Everything's Possible

Disappointment leads to confusion

2012-01-27T19:50:00.003-05:00

Dr Basu called me a little while ago, Dylan's scans are stable. She then told me Dylan has HAHA. She proceeded to say that he is the first patient to get a HAHA, to which I replied "well I told you if anyone would it would be Dylan" She said that I was right and that we will test his HAHA again at the end of February. Until then Dylan is suspended of the Hu3F8 study :( Dr Basu said he must have a good immune system. I didn't know whether to laugh or cry. I couldn't show emotion in front of Dylan after I told him, I didn't want him to feel like he had failed. Ultimately I cried once I was alone. We were so excited about this study, so happy we finally started and now...all gone. My head is swirling with thoughts. What do we do now? Wait I guess, test in a month. Part of me wonders if Dylan being HAMA positive for so long and almost immediately and the same with the HAHA, is this why he remains stable? Is his immune system so good that it rejects these antibody treatments. Is there a connection with him remaining stable all this time?

I wish I had a crystal ball, I wish I knew when Dylan's cancer would progress, in a week? 10 years from now? Do we stay in New York? Do we go home? If we go home and he progresses can we get back into the USA to see our team at MSKCC??? I have no idea, honestly. We have come so far, new studies are in the pipeline, Dylan is not and never has been NED (No evidence of disease) If we go home where do we begin? Cain will be devastated again, Dylan's life may be in peril...I just don't know anymore. Big decisions, we have to talk with the team after his test in a month and see what they recommend, this will help our decision making. We re-apply for Visas in a few months which is also stressing me as it always does. I just feel empty, sick and confused. I am homesick but I cannot let that influence any decisions. We are set up here in New York and turning back now means starting all over again from the bottom literally. A place to live, jobs etc. I don't really care about that though, however I do care how that makes the kids feel. I also care that the main reason for being here is to try and save Dylan, get him treatment. Home there is nothing, no treatment options, no clinical cutting edge trials to try. Well I guess I just answered my own confusion right there, right here on his blog.

Home = No treatment & No hope for cure
USA = Treatment & Hope for cure

Ok well writing helped LOL. Guess we speak to the team in a month after the HAHA test and see what treatment options are available next. Thanks for listening. I actually feel much better now that I put this in writing and feel like I knew the answers all along.

Why is there no cure for Neuroblastoma?

2012-01-26T12:23:00.002-05:00

I get asked this a lot and I think Band of Parents explained it best on their website...here is a copy...

Why is there no effective treatment for advanced neuroblastoma? The answer is simple and devastating: there is not enough money for research. Yet, consider this - since the 1950s the rate of children surviving leukemia shot from 10% to 80%. Similarly, the survival rates for other types of cancers, like breast cancer for example, have also improved significantly thanks to extensive research that developed innovative and less invasive treatment options. In contrast, children diagnosed with cancer are faced with woefully inadequate funding from the government – and a lack of interest from the pharmaceutical industry, because orphan diseases like neuroblastoma promise little or no profit. Unfortunately no profit leaves pharmaceutical companies with little to no incentive to develop treatments. Children diagnosed with neuroblastoma deserve better odds of survival on par with most other cancers. Cancer kills more children per year than cystic fibrosis, muscular dystrophy, asthma and AIDS combined. But pediatric cancers collectively receive less than 3% of the National Cancer Institutes $3.1 billion dollar annual funded research portfolio of 2009 (more). For every dollar spent on a patient with breast cancer, less than 3 cents is spent on a child with cancer. Aren’t children our most precious resource? How can you put a price on a child’s life?

Cain's Amazing Poem

2012-01-19T18:10:00.003-05:00

"I am from" by Cain Hartung

I am from Staff paper
From Yamaha and Rickenbacker
I am from the suburbs, the countryside and the city
Sound of Cockatoo, sight of starless skies
Smell of burning eucalyptus trees
I am from the lemon tree
The falling autumn leaves that gravity pulls to Earth
But from homes sight they seem to be floating away to the atmosphere

I'm from Friday afternoon barbeques and midnight ER runs
From Melissa and Timothy
I'm from the "coming and going"
And the "Forever Enduring"
From "Always try your best"
And "Everything's Possible"
Nothing is free in life
Quite the contrary
In order to tread the road to success
There's enormous amount of sacrifice

I'm from the land down under
Fresh meat pies and melted Tim Tams
From the sounds of heart rate monitors
And adjusting beds
From the person who is my motivation
Innovation and Inspiration

I am from the North and South
Both born in the Spring and Autumn
My life runs through staff paper
hitting it's high notes and it's low notes
In time signatures I struggle to follow
I am me and no one else
I do what I can to make the best out of any situation
But at the end of the day

I am from what my loved ones make of me

Hu3F8 first dose

2012-01-15T15:10:00.003-05:00

Dylan had his first dose of Hu3F8 (Humanized antibodies) on Wednesday. We started at 8am, Dylan was pre-medicated with Ondansetron, Vistrol, Claritin, Tylenol and Ranitadine. The infusion of Hu3F8 was for half and hour at 12pm. Dylan had one rescue of Dilodid IV. His vitals stayed good, his oxygen saturation and heart rate remained normal unlike with the regular 3F8 (made entirely of mouse antibodies). He sleep the entire time and only complained of chest pain at a 7 out of 10 pain level. They took an EKG and blood draws until almost 7pm, then we headed home. Due to the dilodid Dylan was unable to walk. Once home Dylan didn't eat his dinner and asked for pain relief for pain in the chest and stomach, he slept and by midnight had a fever of 39.4. I dosed him every 4 hours Tylenol (Panadol equivalent) and dilodid. The next day we went to clinic for blood draws and Dylan was in terrible pain in his legs, chest and stomach. Dr Modak ordered IV didlodid stat. After a few minutes his pain went from a 10 to a 6-7. He dealt with it ok and asked if I could take the IV dilodid home cause it worked better...yeah, not able to do that Dylan. They doubled the amount of oral dilodid to be given at home. Dr Modak explained that Dylan was the first child to have Hu3F8 at 4 times the dose and it seems Dylan experienced more pain than the past patients at lower doses. He also explained that Hu3F8 stays in the body for 48 hours and the pain should go by then, and it did. Hu3F8 is designed to stay in the body longer, that's the plan. There is a small percent of mouse antibodies in the humanized antibodies and that explains the pain. Dylan also complained of neuropathy (pins and needles sensation) in his hands and feet, so gabapentin has been started 3 times a day orally. Dylan explained this as "the glass feels like it has a weird texture in my hand" and I had to change his drink into a plastic cup." Even though this treatment is painful, it is way better than past treatments and especially chemo. You have to remember that this is not a toxic drug going into Dylan's body, that's the beauty of it. No nasty chemical or poison in his blood, it's an antibody that is teaching his own immune cells to kill the Neuroblastoma cells. It does not drop his counts needing blood and platelet transfusions, it does not cause him to be immune suppressed and exposing him to the risk of other infections. It doesn't make his hair fall out or make him vomit and loose weight. Dylan is totally back to normal now, however next Wednesday we do it again and he will face another 48 hours of pain. My little fighter, fighting the biggest fight of his life for his life. My little man, a brave super hero.

Hu3F8

2012-01-08T02:16:00.002-05:00

We met with Dr Basu, a fairly new doctor to the MSKCC Neuroblastoma team, who is running the humanized antibody therapy study. We have signed all the consent forms and are set to start on Wednesday. Dr Basu explained that Dylan will actually be the first child to start at the 4 times the dose escalation. The good news is that Dylan can continue this treatment for 2 years and step up when the dose escalates, he can start again at the higher dose along the way. This is of course as long as he does not have any disease progression, serious side effects or develops a HAHA that doesn't go away. Dylan has a busy schedule Monday at hospital with multiple tests and then gets a rest Tuesday, with therapy starting Wednesday. He will have the HU3F8 intravenously every 8 days, with daily blood draws at the same time of day for 14 days, yes even on the weekends. After that I think he gets 2 weeks off from blood work, then it starts again for 14 days...I think. It's a little bit of a complex schedule with treatment falling on a different day each week, so I am just going to take it week by week. Dylan will scan every 4 weeks to see how it effects his disease. Fingers crossed, I will keep you all updated as we go along.

Merry Christmas and Happy 2012

2012-01-05T14:44:00.004-05:00

We had a wonderful Christmas with Dylan's Nana (In photo) and Cousin Odin, here for 4 weeks visiting from Australia, it had been so many years since we were able to spend the holidays together. They left New Year's eve and we welcomed 2012 with a quiet night at home, content with the ending of 2011. Thank you to everyone for your gifts and cards and thank you to the "Very family" who did their yearly Christmas fund raising in NJ for our family, which enabled us to get Cain a new itouch and catch up on the lingering bills of 2011.

2012 brings us a new Clinical study for Dylan, the humanized antibodies that we have patiently waited to get to triple dose for us to start. We are very excited but reserved at this being the cure. It's well worth the try and given the low side effects and research, it does sound promising and as we all know with this cancer, it is very individual to each patient and it just might be the "one". We venture into this treatment with the usual hope of every one we try, and pray that this is the right track for getting Dylan cancer free. It all started yesterday with blood tests for HAMA & HAHA, then tomorrow an EKG, MIBG injection, CT scan, then MIBG scan Saturday and Monday Echo, Bone Marrows & MRI of the brain. Dr Modak said we could start the treatment as early as next week! Dylan is ok with it, his main concern is the brain MRI, he hates them out of all the tests. He is very happy that commencing treatment means "no school" typical 13 year old! It has been a long time since we spent long days at hospital, and the thought is a little scary, but I am sure we will settle into the old routine like putting on a pair of old shoes we don't really like to wear. Dylan is actually sitting next to me right now singing "I don't have to go to school til Wednesday!" It may be the whole week in actuality if we do start therapy next week as planned. As he cuddles Bear, he asks me the schedule ahead and seems pretty fine with it. He really does amaze me so much. Well, I will fill you in on the treatment regime as soon as I know it and of course how he does with it. Humanized antibodies was developed because of the issue of children like Dylan who develop as resistance to the mouse antibodies (3F8) known as a HAMA (which Dylan has had for years) The new Humanized antibodies do have a risk of rejection known as HAHA but it is minimal and so far goes away pretty fast with the kids who have developed it. The Humanized antibodies have also been "tweaked" to make then much more effective with receptors and other technical things I don't really understand. When they start new therapies the dose is very small, but now they are up to triple dose and since Dylan has run out of other options, we are going to start at this dose. Dylan's cancer remains stable in his hips, pelvis, spine and femurs, and it's a race against time to get it gone before it progresses. We have been so fortunate to have him stay stable for so long, and we certainly want to keep it that way or even better, a cure! 7 years in treatment in New York, it's been such a long road so far.

2012, is this the year we have been waiting for?

Click HERE to read about Hu3F8, Dylan new treatment.

Dylan is now officially a teenager!

2011-11-10T21:59:00.003-05:00

Wow 13 ~ I can't believe it! Over 7 years ago, I would not have ever thought Dylan would be a teenager, of course I hoped it and I have fought for it, but as a cancer mum, it's a huge milestone. Dylan is still fighting cancer, since he was 5 years old, he has never been cancer free, and has had cancer for more than half his life, but he is here and he is now a teenager with cancer, not a kid with cancer.

It has brought up many emotions, not only for Tim and I but also for Cain. He hugged Dylan last night, crying and telling him how much he loved him and how he is "his" hero. Then of course, that made me cry!

OK it's time for the birthday story LOL, 13 years ago I was booked in for a C-section, as Dylan was breech. I had a spinal block put in, Tim beside me on the operation table with his hospital cap and mask on, holding my hand and looking into my eyes. The sheet was up so I couldn't see all the goop. The doctor had the scalpel in his hand and then put it down. "Lets do another quick positional check, wait a minute I just want the other doctor to check" Then I heard "well mum, appears your baby has done a U-turn while you were on the table, he is in the right position for natural child birth" Shocked, I was wheeled into recovery. The nurse told me that I would be taken up stairs for inducing in the birthing rooms. I still couldn't feel anything because of the spinal block. Then after 3 hours, all of a sudden I felt EVERYTHING! An hour after that, Dylan lay on my stomach...and pee'd on me! The next day I went home with baby Dyl. I remember Tim pulling up in our driveway and for the moment when he got out of the car to come around the otherside to open my door, I had this overwhelming feeling of "wow, I am sooo happy". Kids grow so fast, I feel like their childhood was a blink. I have two teenage son's now, Cain will be 17 next week. Now I get Cain coming in asking me to squeeze pimples and Dylan telling me he wants a girlfriend! Ah teenagers, what joy.

Thank you to everyone for getting Dylan to where he is today. Without your prayers, support and fundraising, I know that he simply would not be here, which is so hard to ever imagine.

Happy Halloween

2011-10-30T23:21:00.001-04:00

All is well from the Hartung world. We had a fantastic time with my best friend and her daughter who stayed with us almost 7 weeks from Australia, slight hiccup of their travel plans with hurricane Irene but other than that all went well. I even rode a bike around Manhattan and over the Brooklyn Bridge, and I hadn’t ridden a bike for 15 years! Guess that proves you really do never forget. Dylan is still on Accutane as we wait for the humanized antibodies to increase dose in upcoming studies. He is doing well apart from the usual colds that come at this time of year and his usual fatigue and some aches and pains. He is still having home instruction as he realized that his fatigue issues would make full time schooling impossible. Cain saw his cardiologist and his dilated aorta is the same, no worse or better. He has been given activity restrictions but luckily his passion is music and not sport. We saw the human genetics doctor who says he is on the border for a diagnosis of Marfans. This diagnoses is not an easy one, it involves a series of puzzle pieces over time to get a true definitive answer. She has ordered blood tests that if positive will give us a Marfans diagnosis, however if it is negative it will continue to leave him on the border until another symptom arises. We just have to wait and see, but either way, Marfans or not, he still has a heart issue that needs monitoring. Cain says its fine, it could be so much worse and he is so right. I guess having a little brother with cancer puts medical issues in a huge perspective. Tim and I continue to work and we are at the stage of renewing our visas once again. Mountains of paperwork ahead of me, over the next month in preparation for the application. The boys have their birthdays very soon, it’s hard to believe that not only will Dylan officially be a teenager but also that Cain will be 17, he is almost a man! Dylan has his usual long wishlist on Amazon, he is fortunately still relatively easy to buy for, Cain on the other hand is grown, so birthday wants from him is just clothes and musical equipment. It makes it really hard because he can’t find many clothes on Amazon to put on his list (hard to choose without trying on) and musical equipment is so expensive. I suggested gift cards, but again not an easy thing to add to an Amazon list. A few of you have asked me what to get Cain and my suggestion is gift cards for clothes, shoes, music or movies…that’s my best I could come up with. Dylan of course is into his yu-gi-oh cards, nerf guns, ps3 games and even though it’s not on his list, he does still love hot wheel cars, he probably doesn’t want to admit it now that he is a “teen”. We had our first snow for the season yesterday, however it’s actually still fall. It’s the first snowfall in October since 2002. It wasn’t very pleasant though, nice to watch from the window, but being out in it was pretty horrible. I wore my sneakers to work, thinking t would just be flurries, needless to say on my way home I had very wet feet. It was windy and cold, and mixed with rain, so the snow was like a slushy. Today the sun was out, and dried up most of what was left. We had the “Angel on a leash” therapy dog Halloween parade at the RMDH, Bear wore his skeleton costume and had a great time. Photos can be seen on “Bear’s” facebook page. Speaking of photos, Dylan’s photo link should now forward you to his facebook page where I have uploaded many photos that were once accessible in his album. After 3 online galleries shutdown, I have now resorted to just using the facebook gallery for now. Well next update will be around the boys birthdays unless some drama happens between now and then. With Love & Hope, Have a fun and safe Halloween, the Hartungs.

Hurricane Irene

2011-08-27T14:58:00.004-04:00

Just a quick update, as we prepare to go through our first hurricane! As you know, hurricane Irene is headed straight for NYC. I spent yesterday amongst panic shoppers, trying to get supplies. The supermarket shelves were almost bare, all the water & bread gone. The lines were out the door! At the hardware the line was around the block and stores are bare of flashlights, batteries and candles. I managed to get candles at least and we have 3 flashlights and batteries. We are not so worried about damage in our location, however flooding and power loss is almost 100% guaranteed. We are in a flood zone where we live, but we are not in an evacuation zone. We are a block away from non flood risk areas at least. We will remain in our apartment, which is unfortunately at ground level, so we could be in trouble if the East river floods...the East river is at the end of our street. Tim has to work at the building that he works at, so it will be me and the kids, along with Bear and a foster dog we have, that will brave the hurricane and seek shelter away from the windows. We don't think the windows will blow out but there is risk of them being smashed by debris. There is a park opposite us with trees that may fall and construction directly opposite us with things that could potentially end up through our windows...if this happens then high wind and rain will come streaming in and ruin electrics and everything we own...this is my biggest fear. We already lost just about everything when we sold our home in Australia, and now we could loose it all over again, without money to replace things. I went to work this morning and in between seeing clients pets, we had to clean the back outdoor area in the rain, so that the drains hopefully have a better chance of saving the basement from flood. By the time I finished work, the public transport system had totally shut down and will remain shut down until after the hurricane has come through. The subways have a high chance of flooding and it may be a long period before it can run again. The power company is going to shut off the power if water leaks into the underground mains. I saw many things on my way home that will likely be a problem, such as all the garbage street cans are full,I guess sanitation has shut down too, this means the garbage will clog the drains, they are also not bolted down so they may hurl in the air into business windows. I also saw plants and chairs on balconies and window air-conditioners that are not secure. Water may be shut down too, this means no toilet to flush and no water for the dogs to drink. I managed to get 2 gallons but that's all we have. We will fill the bath tub and sinks up later tonight as back up and fill empty soda bottles. Irene has already killed many people in it's path, let's pray NYC is as prepared as they say they are. A lot of people are brushing off the warnings..."it's just media hype making it sound worse" " Ah it will just be a lot of rain and some wind, people are panicking for nothing" these comments worry me, because what if it's worse than these people think, are they prepared? With no power we have no elevators for the people who live 50+ floors up, atm's won't work, no internet, can't charge your cell phone, freezer and fridge issues for homes and businesses, the list goes on.

The biggest disappointment is that my best friend Jenni and her daughter who I have not seen in 7 years just landed in LA and is stuck there because of course all the New York airports are closed. They are headed to a hotel as I make this update. Her airline only flies to JFK and that airport will be flooded for a long period. At this stage they are telling her that it will be a week before she can get to NY. The other airlines are selling tickets fast and the prices are insane. We were going to spend my birthday together for the first time in 7 years, but now it looks like she will miss it. I also took next week off work to spend with them but it will now be wasted :( I can't believe a hurricane is coming to NYC, it's such a rare occurrence! Poor Jenni, she never travels and I remember how scary it can be when your not familiar with traveling overseas, I can't believe this is happening! Wish us luck, hurricane Irene will be here very soon.

On a happy note, the humanized antibodies are here! MSKCC started the study this week and I believe 2 patients have started. I am waiting to hear from Dr Modak as to when Dylan can start. We know there are a lot of children who are not as fortunate as Dylan, who remains stable, therefore we are happy to stand back and not pressure the team to get Dylan started yet. My only concern is that the study doesn't close before he gets on, but I know in my heart that Dr Modak would not let that happen. Dylan has been first for a lot of studies, this time we will see the effects on the ones who started this week, be that side effects and disease response. The humanized antibodies sound very promising, I have never heard the team so excited about a new study. Here is a copy of what the head of the Neuroblastoma team at MSKCC had to say, from Dr Cheung

Dear BOP:

As you have probably heard, we finally got the green light from the FDA. The first ever humanized form of antibody 3F8 is going to be given to neuroblastoma patients starting this week, having gone through all the hurdles, many unforeseen. I want to thank you all for this unprecedented grass root idea, your tireless effort and generosity, and above all, your faith in our ability to get this done. Our hu3F8 is one of the very few drugs specifically made for treating neuroblastoma patients in the history of medicine. We are proud of this enormous effort which will not be possible without your partnership. Words cannot describe the excitement of our clinical and research teams, and hope you will pray for its success, as we all do.

Sincerely,

nkc

Finally an update!

2011-08-10T22:55:00.002-04:00

Yes here I am, sorry it’s been so long. I did have an update some months ago but left in draft, then my computer died, and Dylan’s died a week later. Thanks to very special angels in our lives, I now have a computer! It was a wonderful surprise, and one that I am so very grateful for. There are people in our lives who may not have known us all that long, but they are there for us as if we were family, you know who you are, thanks again for my computer! Cyber hugs and kisses! I then have been sick the last 5 days and my brain was just a fog, still kinda is as I am not completely well yet, but it’s back to work tomorrow regardless.

Dylan is doing great. He is currently on Accutane, 2 weeks on and 2 weeks off, as a tumor inhibitor, to hopefully keep Dylan stable until a new therapy is released. Dylan has side effects but in the list of limited choices at this stage in treatment, it’s the least inhibiting to his lifestyle and immune system. The main Pro is that his counts do not lower, the immediate obvious cons are dry skin, cracked lips and sensitivity to the sun. We are anxiously waiting for the humanized antibodies to be released as are the rest of the Neuroblastoma world. We may wait until the 2^nd group of kids to try the study, just to see what to expect before we dive right in as we usually do. Our views on treatment are to maintain quality of life, and while Dylan remains stable, we should just take things more conservative now. Staying on Accutane is not our ideal situation, and hopefully it will only be for a few cycles. Currently Dylan is back in the dentist chair for a few months getting some major work done. His 2 front teeth were decayed and both need root canals. After that is done he needs 3 crowns, 2 front teeth and another on a back tooth. I am hoping that this work will give him more confidence and allow me to photograph him more often with a proper smile. Cain is doing wonderful. He just returned from music camp with a certificate of excellence and a scholarship for next year. He also has joined a band separate from the Ronald McDonald House and is over the moon with rehearsing with them and playing regular gigs. They even have a gig lined up at Webster Hall and a band manager!

Another reason that I delayed in an update was because I didn’t know what to say when our hearts broke on June 20th, the day Mason Thomas passed away. Kelley (Mason's mom) and I were very close friends for many years during the Ronald McDonald House years. We spent lots of time together, and Dylan and I would spend a lot of time with Mason too. I am impacted with every child’s passing, but there are some that you just got that little bit more attached to, and when they go, well it hits you like a ton of bricks to say the least. Dylan in his usual style, took the news well. He said he is in no more pain and cancer free. Then he ran off to play his playstation. Almost all of the friends Dylan has are now in heaven. Maybe this is the reason that he now refuses to befriend other cancer kids. I can't get him to socialize at the Ronald McDonald house much anymore at all.

We are preparing to try and send Dylan to Middle School next year. He has expressed his interest in going and being a “normal” kid, he also needs the socialization and friends. At the same time I am very fearful in sending him. Maybe I am being selfish and I need to stop wrapping him in cotton wool, it’s time to cut the cord but it scares me so much. I am so use to protecting him, from not only illness but of the world too in some way. We are trying to find a smaller size school and hopefully that will make it easier for me to accept. I am just worried that he will be teased for being so short, being knocked over in hallways and getting to and from school. I also worry about his exposure to viruses and diseases. He would get teased if I walked him to school, he refuses to allow me to arrange a school bus pick up and I worry about the traffic, he really has no road sense, he is off in his own little world and not paying attention. I could walk a block away from him and watch I guess. Anyway, that's not until September and we will cross that bridge as it comes, we all know too well how much things can change between now and then. In all honesty, Dylan is just existing, and I need to let him “live” by going out in the world and becoming a teenager…he will be 13 in November! He’s just so little, he still only wears size 8 clothes and has had the same shoe size for almost 3 years. I think people will wonder why such a young child is on his way to Middle school, unbeknown to them that he is much older. I was actually walking home from work one day, and Tim had let Dylan go to the deli to buy a snack on his own (no roads to cross). I was about a block from him and as a passed a couple of people, I heard them say “such a young boy sent to the store, that’s child abuse!” I couldn’t believe my ears, but then I realized that he does look so young, and they had no idea he was actually 12. I will keep you posted on how the school thing goes, we have to get his IEP re-evaluated and have aids in place to assist him, so it will be most likely well after school year starts anyway, and I can’t start these processes until they open.

We are getting really excited in preparation for the arrival of my best friend Jenni and her daughter Kailah, who arrive in less than 3 weeks for a 7 week stay with us. I have not seen them since I left home in 2005, and I am so ecstatic. We will get to spend both our birthdays together for the first time in 7 years, and I can’t wait to see her daughter who has grown up to be a young lady now. Jenni watched Dylan be born, and I know that to see him in person again after all these years will be very emotional for all of us. Dylan’s cancer has not only affected us, but also the lives of many, and I know that Jenni is deeply changed by our journey. As friends we never really got to grieve together, in Australia it was a blur of hospitals and then fund raising to get him to America, so we never got to share our pain of this tremendous life change. 7 weeks is a drop in the ocean in time, but it’s long enough to share and catch up on so much we have missed together. We will be grateful for every moment we have, as we have no idea how long the next time we see each other will be.

The dark cloud of Neuroblastoma

2011-05-30T08:12:00.005-04:00

I came home the other day from work to find Dylan in the kitchen clutching a handful of hair and tears in his eyes. By the evening I found myself shaving what was left of his hair as my son transitioned back to the "sick" look of a child with cancer. A flood of emotion ran over me, it was more of a shock than I thought and I spent a period of time crying in private. Dylan is doing ok, but he is still neutropenic and Tim and I have told the doctors that we are ceasing the current study. In the light of knowing that Dylan did not truly progress as thought, putting him through treatment that is harming his immune system and physically changing him, the balance of life quality is high on our agenda. Dylan has also suffered from emotional changes and is having severe mood swings. He has told us that he does not want to continue this study and we respect his wishes. If he was progressing then our views and Dylan's would be different. Dylan is wise and knows that it is not a critical therapy, it's just another "let's see if this one works" rather than a "this one has to work now" kind of treatment.

We have lost a lot of children, many of late, the passing of Nick Franca and Jake Miller was very hard, especially for Cain who was very good friends with Jake. There have also been many children receive bad news and returned home for Hospice care. The hardest is yet to come for me personally. Mason Thomas is a child who I have known almost the entire time that we have been in New York. His mom Kelley and I have become very close friends, probably one of the closest friends I have made since coming to NYC. They live in Virginia but spent years with Mason in remission (NED) and having regular 3F8 antibodies. Kelley and I have a mountain of memories together, the good and the bad. Those who have followed Dylan's website would know that we joined Kelley's family reunion in the Catskills and Kelley's family made Dylan and I feel a part of their huge loving family while we were here on our own. Mason has now been given days to weeks to live, and Kelley is now facing the task of planning his funeral. I don't care how much hope you have as a parent, at some stage during the cancer diagnosis and treatment period you think of a funeral for your child. You push it aside and keep it moving, but for many, it becomes a nightmare reality. I love all of these children, for different reasons, some pass and they hit me hard, some give me peace because I could see their time here was complete, but then there are ones who I almost consider as one of my own, and Mason is one of them. I have snuggled up in a hospital bed with this child, stroking his head as he pushes through the nausea of chemo, held his "spew" bucket for him and held him down as Kelley had to give him injections of GCSF. I think too that each passing gets harder for more, my skin doesn't get tougher as some may think, a chunk of my heart goes with them, forever. I am in emotional turmoil of constant bouts of crying. Countless text messages to his mom Kelley, and a battle of emotions. My heart tells me to go to Virginia and run to Kelley's side, but my head tells me logically that I cannot emotionally deal with what's ahead, not face to face especially. The last time I saw Mason was at MSKCC, I went to visit him about a month or so ago, he was in his hospital bed with new red Nike sneakers. He was wearing them in the bed he loved them so much. Tim's last memory is when he stayed the night at our apartment a few months ago and Tim made him eggs and bacon for breakfast. Kelley was so happy that he actually ate, the chemo was kicking his appetite but Tim's breakfast did the trick that day! I don't want that to be our last memories, I want to see Mason again, I want him to hug me and say "hey Mel, what's up!" but at what cost to my mental health and my families anguish for my emotional state. I usually don't have the courage to read the websites of children I know are close to gaining their angel wings, I get half way through and close it down, flooded with tears. Not this time, I will read every last word and let the emotions in, I owe that to Kelley who is doing an amazing job, I am so proud of the mom she is and the love that her whole family have for one another, especially for Mason. Kelley's words at this time are important I will cry multiple times a day as I think of Mason, until he is called to heaven. If I could take away the pain from anyone it would be Kelley right now. I feel this so hard in my heart and Kelley must feel it a million times over. I cannot even imagine what more pain than this feels like. Kelley and Mason are fully supported by friends and family and more love than most I know, so that gives me some comfort that I cannot be there.

It sounds selfish that I am saying how horrible this is for me, but what I am trying to relay is to somehow give everyone who read's Dylan's journal an insight of how having a child with cancer is. Putting it to words is almost impossible. It's not just "your" child. You meet so many along the way, especially if you spend multiple years in an institution like the Ronald McDonald House, it just gets harder, not easier. You bond with other cancer families more than you have ever bonded with people before. It's a bond that is with you for life, like your a member of a family you never knew you would be part of. You don't know the shoes until you have walked them, and for us pediatric cancer families we share that unique bond. Dylan is much more well than most with Neuroblastoma and I thank my blessings every second that this world turns, but deep down in a dark place in my heart, I know how close to the edge of the cliff we always are, even if it appears we have come so far...we really haven't, just a gust of unexpected wind could change everything forever. We are still in limbo, we have never been rid of the cancer in Dylan's body since he was diagnosed in 2004, and we do not know what lays ahead for his future, or ours. I never like admitting it but Dylan's chances of growing to adult years are very slim.

Please keep Mason's family in your prayers and let Kelley's words on Mason's website leave you with such a value of life and how precious your children truly are. Click HERE to see this remarkable family and wonderful kid Mason, affectionately known as "Nate". The whole thing sucks, it's not fair, it's just plain not right. I just wanna screeeeeeam!

The photo above is the last photo of Dylan and Mason together at MSKCC about a month ago. God be with you Mason, we love you so much, be brave young man, your always in our hearts.

Just a quick link

2011-05-17T21:48:00.006-04:00

Four songs from Bad Habit...including "I will always be there" written by Cain for Dylan.

Belated entry

2011-05-16T23:43:00.001-04:00

It’s been a whirlwind of craziness lately. Time is just so hard to find, hospital, work, doctors, work…So finally I am doing an update that I should have done a few weeks ago. It’s been a challenge to say the least, with Tim and I on opposite work shifts, Dylan back and forth to hospital and trying to meet the needs of home instruction state testing. I have lots to say, first off let me say that in the past few hectic weeks we have had great loss and sadness as well as good times and joy. Typical of the pediatric cancer world really. Some days you just feel like you can’t go on, and other days make you fill with joy and happiness when the good times come along that you appreciate so much more. First off is the news of Dylan’s scans. Two days into Dylan’s new clinical study, we were told that his MIBG scan results were in and they gave us the printed report.

IMPRESSION:

Nonvisualization of previously identified MIBG-avid foci in the skull and the left proximal humerus.
2. Grossly-stable appearance of other MIBG-avid osseous metastases in the spine, bony pelvis and bilateral femurs.

Whoooooaaaa! It disappeared by itself? The last reading was wrong? Everyone’s Prayers worked? I don’t really care how but it did…was it a mistake in the last scan? Who cares? It’s gone! Tim, Dylan and the doctors decided that since Dylan is already 2 days into the new clinical trial, that we may as well continue as long as the side effects are not too severe and see what the next scan says that’s due after this first cycle of new treatment. Who knows, it may just affect the stable disease that lingers in his spine, pelvis and legs. The first week involved 5 days of Vorinostat and 3 days of Etoposide (Chemo) and Dylan was very fatigued and slept a lot. Week 2 and no treatment (just blood draws twice a week) and his only side effects were some fatigue and a poor appetite. We are on week 3 and he is side effect free (on the outside) and no hair loss, but his platelets are down to 35 and his ANC (Neutrophils) are at 1. Most likely by the end of the week he will be neutropenic and need GCSF injections and probably a platelet transfusion. Week 4 is Vorinostat and more chemo…then 2 weeks off, then scan time. Next week will be the hardest to try and keep him well, I think that we will pull him off study after the scan, unless the results see a movement of decrease of disease.

Next on the list of events to tell you that Dylan had a wonderful time in Florida and made a few video blogs of the trip, but no photos :( It was a rest he really needed, and he came home looking and feeling wonderful. He spent most of his time in the pool or at the beach with a banquet dinner at the Country Club for Easter. Cain performed at Carnegie Hall once again with the NY Pops and even though Dylan was also supposed to perform, he was unable due to not feeling good after treatment. The Children from the Ronald McDonald House sang and danced with Maurice Hines and Cain played on Bass Guitar. All was lost for Dylan, he performed tonight at the Ronald McDonald House Annual Gala at the Waldorf Astoria. Cain’s song that he wrote for Dylan called “I will always be there for you” was recorded a few weeks ago at the Magic Shop, a well known studio to the stars who include Bjork, Cyndi Lauper, Oasis, Lou Reed, The Rolling Stones and Sonic Youth just to name a few. This dream became a reality with the help of the New York Pops and families of the Ronald McDonald House. The debut was tonight at the Gala and I am in the process of uploading the footage to Dylan’s Youtube Channel. Please excuse the moving video, it’s hard to cry and video at the same time! There are photos on Dylan’s Facebook also. The song will also be available on iTunes soon with 70% of the proceeds going to the Ronald McDonald House of NYC. I have a suspicion that this song may even become the RMDH theme song! Sorry about Dylan’s photo link, they are closing down the website I use, so again I have to reload and create a new one. I also have lots of broken links and need to update the house Heroes page…I will work at it every chance I get…eventually.

Bear officially became a therapy dog yesterday, passing his evaluation with flying colors! We are so proud of him. Now once we receive his ID badge in the mail, he can visit the kids at RMDH on a weekly basis and be included in all the “Angel on a Leash events”. It feels great to be able to share him with others and especially with the kids from the house.

With great sadness and despair, Nick and Jake both became angels. Both fought so hard for so long. I don’t know what to say, the loss of these 2 NB fighters has hit everyone hard. Many other children we know at the house have also received very bad news and are heading down the palliative care path. There’s a cloud hanging over all who are affiliated with MSKCC and RMDH this month in particular. At tonight’s Gala, many of the staff and parents just had that sad look in their eyes, hidden behind smiles and many broke down when the band played their song. It was all filled with words we in the cancer world can relate to so much, that the tears just flowed. All our love to the Franca and Miller family, your loss is with us all.

Decision made for treatment plan

2011-04-21T17:22:00.012-04:00

After a lot of research and looking into options at CHOP in Philadelphia, we have made the difficult decision to go with the study offered at MSKCC that involves chemotherapy. It was a hard choice to make because we just didn't want to go down the chemo road again with only one bag of stem cells left and since we were unable to harvest anymore, it means that if they are used, then further options become even slimmer. The study is a Phase 1 protein targeted therapy with two drugs Vorinostat and Etoposide (chemo) otherwise known as VP-16. In a nutshell, the aim is that the Vorinostat opens up the cancer cell after approx a four hour window, then the chemo is given...the door shuts and it destroys the cancer cell. Once the cancer cell is dead, then the body will just absorb the cell after a period of time, and then spots in scans clear up. All studies sound great in theory, but they are just that...studies. We try and see if it works, hopefully one day one will and it will be the end of Neuroblastoma killing our kids. The drug Vorinostat is approved for the use in Adults with great results, lab results on mice show a great response in Neuroblastoma cells, so the study is to see if it works on children with different cancers, and Neuroblastoma is one of them. The doctor heading the trial hopes that the side effects will be minimal but Etoposide (chemo) is a drug that Dylan has had in the past at a larger dose, so we know that he is likely to suffer from nausea, vomiting, counts dropping and hair loss, but there is a small chance he might tolerate this smaller dose better. Vorinostat will be given as a capsule by mouth once a day for 4 days, then the chemo will be on day 3 for 2 days...I think...from memory of the discussion with the doctor. Then Dylan will get 3 weeks off and that completes 1 cycle. In the 3 weeks off, he will need several blood drawings to check different levels of not only the drugs, but also his counts. If he becomes neutropenic (no immune system) then he will be given GCSF injections to hopefully bring them back up again, if he gets a fever while neutropenic then he will of course be hospitalized until they come up. The good thing is that the chemo can be delivered by a peripheral line (regular catheter in the arm) which means he will not be at the usual risk of a line infection during neutropenia. Dylan's only concern...hair loss. Let's hope he falls into the category of kids who do not experience the side effects and he gets to keep his hair. Dylan will have scans next week as the pre-trial work up that is required, then treatment will start on the 2nd of May.

The good news is that Dylan gets a mini vacation before he starts all this treatment, he has been kind of bummed out lately, so this will do him the world of good. Dylan leaves for Florida with a friend of ours for 4 nights. Our friend has family meeting up for Easter break and they have a wonderful condo by the beach with a pool and there will be lots of kids of various ages there to play with. Dylan is so excited, and can't wait to spend the next 4 days in the pool! Cain just got back from a school trip to New Orleans for 3 days, as part of his Service club work that he does each week feeding the homeless, doing community services etc. He had such a wonderful time and even got a steam boat ride along the Mississippi river! Tim and I were so pleased that each of the boys were able to have mini vacations, we are unable to afford a family vacation, nor get the time off work, so this was perfect, they both get to have some much needed fun and time to recoup...without us having to figure out how to afford it. Little miracles happen all the time, just when they are needed I guess. Not many people know but Cain is having concerns about his own health right now. It started with a routine check at the doctors for some health certificates to be filled out, one for school and one for The Ronald House to be a volunteer for the summer camp this year. We left the doctors office with 5 referrals to specialists! We are waiting to see a particular specialist at the end of May, so until then I am not going to go into detail, let's just say if he does have what they think he has, it has no cure (of course!) but he can continue to live a long life provided he takes the necessary life saving precautions and restricts his lifestyle. Yes, another blow and mountain of stress on our minds, lets pray that the doctors are wrong and the specialist tells us he is fine. I tell ya, I hate seeing doctors! I am due to go myself but have to get the kids medical stuff done first...to be honest, I don't really want to go because I am scared of what they might tell me! Coming up in May, the boys have the annual concert playing at Carnegie Hall and at the Ronald McDonald House Annual Gala at the Waldorf Astoria. Cain also has a recording studio date to record "his" own original music along with the New York Pops as his back up! Cain's passion for music grows further each and everyday and we thank the Ronald McDonald House and the New York Pops for their continued support for Cain to pursue his dreams. He is also scheduled for 4 weeks at the Summer Music Camp on a scholarship again this year. If your wondering why I have put a photo of Cain in Dylan's journal instead of Dylan, it's because Dylan refuses to let me take photos of him lately. Hopefully he will bring home some from Florida, I am sending him with a camera with the hope that he does.

Please pray for one of my very special Neuroblastoma fighters, Mason. He is about to embark on more treatment at MSKCC and he really needs this one to work. Nick is also in need of serious prayers, Nick and his family are very well known in the Neuroblastoma world, I still remember way back when they first came to the Ronald House, Nick was much younger then. I am so glad that he has found love and she is right by his side, and pray they get to have more time together. I hate this horrible disease!!!

In Limbo

2011-04-01T19:45:00.003-04:00

Well Dylan is feeling ok, he had a cold amongst all the testing which made him feel miserable, but he appears on the mend now. He had a CT scan of his chest, hips and pelvis which came back as stable. He attempted the head MRI but was unable to handle it, so another was scheduled with an anesthesia, that came back as no brain involvement and the skull did not correlate with the MIBG spot seen. He also had Bone marrow aspirations, but the results are not back yet. We attempted a Stem Cell rescue with 5 days of high dose GCSF but the CD34 test came back showing no stem cells. That evening at 9pm we went to urgent care for an injection of a drug called Plertxafor which is also a stem cell stimulating drug. The nurse told us the injection cost $8,000....wow! The next morning after another GCSF injection we went to hospital for another CD34 test, and waited for the results. Dylan was scheduled to have a central temporary line placed then down to the donor room for harvesting. We sat in clinic at after 4 hours the results came back as 0.00 so Dr Modak came to us with a sad look in his face and told us that there are no stem cells to harvest and he will discuss Dylan in the NB team meeting and get back to me with a plan. He said that he is not in panic mode yet and that he does not feel that there will be rapid progression. I got the impression that he really didn't know and that none of us will know until his next scan schedule in 4-6 weeks. I think the thing that confuses him is that Dylan's urine markers are in almost normal range VMA 8 HVA 10, this usually means that things are stable because the hormone found in the urine is produced by the cancer cell growth. MIBG scans are very accurate for Neuroblastoma, more than other scans because the MIBG isotope piggy back the Neuroblastoma cells, hence lighting them up. I do know of MIBG scans not showing disease in some children, if anything an MIBG scan underestimates skeletal disease burden, according to this article. I have never heard of them showing disease that's not really there and failed to find any articles revealing that. I'm relieved, anxious, scared and confused all at the same time. I guess time will tell. I believe that Dr modak has Perifosine in mind for the time being, but as Dylan has already been on this study in the past, it will involve more paperwork and possible compassionate grounds for him to get the drug again. I am waiting to hear from Dr Modak on what the plan is after the meeting. Dylan had mixed feeling, he was sad that the stem cells could not be harvested as he knows how important this safety net is for on-going treatment, but he was happy that he did not need to have a central line placed. For now we will continue to take each day as it comes, make the most of each one and not dwell on the maybe's until we know where this road is about to take us.

Dylan makes me smile

2011-03-19T21:00:00.004-04:00

Saturday night after a full day at work, I was tired and feeling miserable. Dylan came in and said "mum you HAVE to watch this song, it's about me!" He turned his itouch in my direction and I watched the clip. I was puzzled at first as the lyrics didn't appear to pertain to Dylan but then when the chorus came on, I knew why he liked it so much. I thought I would share it with you all cause it made me smile...just ignore the lines in the versus LOL

Medical Update

2011-03-18T16:21:00.003-04:00

Well, today I took the day off work because I kept tearing up and we had to go to the hospital. They tested Dylan's blood yesterday and this morning we got the news we can move forward with a stem cell harvest. Today we start GCSF injections at a high rate daily to boost his white blood cells for harvest. This will have the side effect of dropping his platelets significantly and will likely lead to platelet transfusions. It also means bruising and possible blood noses and any trauma to his head (eg: if he falls) then a CT scan will be necessary to ensure no bleeding. Having low platelets means your blood cannot clot and there is a bleeding risk. Another blow today was that I got a print out of the MIBG scan and it says that there is also a new spot in his arm...so that means one new in the skull and one new in the arm. I will copy part of the report below. His VMA urine markers say that it is lower than his previous tests 8, the HVA is not back yet. I am a little confused at this result as usually this marker raises when there is actively progressing disease. Anyway I am now scouring through all his records to try and interpret these Urine results better. Here is the MIBG scan Report:

Findings: MIBG-avid foci are again identified in the thoracolumbar spine, sacrum, pelvis and bilateral proximal femora. These foci are possibly minimally increased in extent/prominence since the prior study.

There is a new focus of MIBG uptake in the midline frontoparietal skull, suspicious for a new focus of disease. On correlation with the study of November 9, 2010, a focus in this location was present, suspicious for recurrence. There is a new, subtle, focus of MIBG uptake in the left proximal humerus.

IMPRESSION: Since January 14, 2011
1. Recurrent MIBG-avid focus right frontoparietal skull.
2. Stable to minimally increased osseous metastases involving the axial and appendicular skeleton.
3. New subtle MIBG focus in the left proximal humerus. Correlate with additional x-ray imaging for confirmation.

So the questionable spot in the skull seen in November last year has re-appeared and is confirmed as progression. January's scan did not show it. The Left arm is however new and this confirms my fears that we are definitely dealing with progression and yes, now it is hitting me like a ton of bricks. That sick sinking feeling in the pit of my stomach, unable to eat and shaking from the inside. I have slacked off on keeping his records up to date over the past year as things had stayed steady for so long. Now I am scrambling to get everything organized, fishing through piles of paper work to get everything in his medical diary so I can feel a bit more knowledgeable by reading through his records at a glance. The adrenaline is pumping so achieving this should be done by the end of the night. Thank you to all who have contacted me with prayers. It's just so hard for me because I have seen so many kids progress and pass, these images and memories have come flooding back, now it's our turn after all these years. What will happen? Will it stay stable again for years or will it progress at a rapid rate? That cloud over our heads has started to get darker, will it sprinkle or pour with rain?

Hartung Boys Sing with Alice Cooper

2011-03-18T12:00:00.001-04:00

Cain and Dylan were invited to join kids from the Ronald McDonald House and the New York Pops, to sing along side Alice Cooper and Rob Zombie for the 26th Annual Rock n Roll Hall of Fame at the Waldorf-Astoria on 14th March 2011. Many other celebrities were there including Bette Midler, Michael J Fox, Elton John, Michael Douglas, Kathryn Zita Jones, John Legend, Tom Waits, Neil Diamond, Dr John, Darlene Love, Leon Russell and many more. The boys had a great time as you can see. It will be aired live on Fuse on 20th March 2011. Visit Fuse website to find your channel with your service provider, Click HERE. For the video on You tube taken by Tim on the night, click HERE

Photos are HERE in the New York Adventures 2011 Album

First Progression of disease in 6 years

2011-03-17T17:17:00.002-04:00

I have bad news. Originally this update was to tell you all about the wonderful experience Cain and Dylan had singing on stage along side Alice Cooper on Monday night, but more on that later since I would prefer to end the entry on a high note. Dylan had an MIBG scan on Tuesday, postponing his usual IMC-A12 treatment until today. Unfortunately upon arrival to the hospital, Tim (I was at work) was told that Dylan has officially progressed with that questionable spot on his skull now more defined and increased. It was seen 2 scans ago but as it was so faint the team decided that it was not progression, but this scan has changed things. This is the first time in 6 years that Dylan has changed from stable to progression. Dylan is no longer able to continue on the IMC-A12 study as any progression disqualifies you from eligibility. What now? Well first step in to do an MRI and CT of the brain to ensure there is no brain involvement, bone marrow aspirations have also been scheduled. We do not no the pace of the progression either. Is this a new bone metastases that will sit there stable for years? Or is this the beginning of rapid disease growth? We do not have the results of the urine markers yet, and the result of this should give us some direction. If his HVA VMA levels are the same then hopefully it is slow, but if they have increased, then this will be devastating. Dr Modak said he will also see if we can harvest stem cells now that he is off study. He does not want Dylan to be on no treatment, so our options now are to go back on oral Perifosine (Inhibitor) or Irinotecan (low dose chemo). Irinotecan does not agree with Dylan as he already suffers from chronic colitis, and Irinotecan gives him even worse diarrhea, which will mean major weight loss. Dr Modak said there are some clinical trials coming down the pipeline, humanized antibodies are due in August at this stage (most likely even further than that) so we are going to have to wait until the Neuroblastoma Team has their meeting next week and come up with a plan. Dylan is doing ok, he is tired and very dark under the eyes but his main concern seems to be the MRI…he hates them. How are Tim and I doing? We are just numb, don’t really know how we feel, but I know one thing…we have to get back on the horse and be strong for him, there is no choice in that. So today I will grieve and tomorrow I will go to work in the morning and put on that poker face.

Now I don’t feel like writing about the Alice Cooper thing, so I will save that for another day. I will say to those who get channel FUSE, watch on the 20^th March to see the Rock n Roll Hall of fame induction of Alice Cooper and you will see the boys singing on stage with him at the Waldof Astoria NYC. Take this link to find out if you have the channel HERE

Another day in Paradise!

2011-02-01T09:35:00.004-05:00

The weather here is very cold and we have had a great deal of snow. Today there is a storm expected of sleet and frozen rain, which is even worse than snow to travel in on foot. Today is hospital day, so Dylan and I were up early and waiting for the bus again. The first bus was too full for us to get on, which is not an unusual thing for this particular bus line, so we patiently waited for the next one. When the next one arrived it was crowded but we were able to squeeze on and make our way towards the back. At the next few bus stops people were getting that New York attitude on, and yelling at each other to move down and turn sideways. One man, by us, who was very busy on his ipad, started arguing back and forth with a man at the front of the bus who was being very rude and obnoxious. The man by us told the man at the front to ask people nicely instead of being so rude, in the end the man by me, said "Hey, I am trying to deal with a 3 year old with a brain tumor" I turned around and said "High Five, I have a kid with cancer too!" He high five'd me back and said "now that really does put bus seats in perspective doesn't it!" Then people started offering Dylan a seat, but he politely said he was ok and didn't take up the offers. People started to ask his age and got sad looks in their eyes. I hope that everyone on that bus had a wake up call this morning, learning about how much worse their lives could be. There was Dylan pushed up against the back door of a crowded bus and struggling with leg pain, but he didn't complain, he just was getting on with his day and getting to hospital for treatment.

Well we are at the hospital now, so I am going to sign off and engage in a board game with Dylan until his IV is put in. I was hoping the sleet and frozen rain would hold off until this evening but I see through the window that it has already started, oh we gonna have a fun time getting home today!

Today's weather sucks

2011-01-18T11:57:00.003-05:00

Today is such a horrible day...it started last night with snow, then frozen rain and now heavy rain. The streets are so slippery and the rain has made the snow turn into a slushie all over the side walk. The corners where you cross the street are a foot deep and there is no way around except putting your foot straight in it. We waited for a bus for 20 minutes to get to hospital, only for it to be so full that they would not let any more passengers on. So we tried to hail a cab, but everyone that went by was taken. After another 20 minutes finally we got on the bus. We were an hour late for hospital but what can you do. Ok so I have vented my miserable morning, now for some good news. Dylan's scans from last week show stable to mildly decreased MIBG avidity of numerous skeletal metastases. Basically he continues to be stable...no new lesions identified. He continues on the IMC-A12 weekly and we wait for the humanized version of the 3F8 which rumor has will be released in the next few months. Dylan is still very tired, gets aches and pains in his legs and is a little moody, but apart from that he is doing well.

500 Journal Enteries for the New Year!

2011-01-01T01:49:00.001-05:00

Happy New Year! Wow 500 entries on the 1/1/11 ~ didn't even plan that LOL! Today was a special Day for Dylan. Most people do not know that Dylan is a huge fan of a Youtube blogger named Charles Trippy ~ in fact most people do not know who Charles Trippy is ~ but Dylan does! Dylan has watched every single video he has made, I believe he is up to day 611. He lives in Florida with his lady Ali, who Dylan also loves. Anyway, Charles Trippy and Ali came to NYC for the New Year and posted on his facebook that he is inviting fans for a snowball fight in Central Park New Years Day. All I have heard is Charles Trippy this and Charles Trippy that for over a year now, so I knew how important this was to Dylan...they are his Cyber friends! The day started early, Dylan and Bear came to work with me...after some off leash time at Central Park for Bear (its off leash before 9am) then we worked until it was time to get to meet Charles Trippy...thanks to my co-worker for letting me leave work early, your the best :) Actually I think he was sick of hearing about Charles Trippy and was glad when we left LOL. We met at Columbus Circle and I was surprised at the huge crowd, I was also surprised at how many kids Dylan's age were fans. Dylan met a boy the same age and gave him his email address, so hopefully he will talk Charles Trippy to him now and not me so much! Dylan in true style, forced his way through the crowd, me in toe with Bear and camera. First he got a photo and autograph with Ali and once we got to the park and after the massive snowball fight, we snagged a photo and autograph with Charles Trippy! Dylan said it was the best day of his life and that his life is now complete! He was more excited over him than Angelina Jolie! When we got home, Dylan went to sleep at 5:30 and Bear joined him, they were exhausted from battling through the snowy hills of Central Park. I have added a new album to the gallery called "New York Adventures 2011, so it's easier to find the latest pics. I am also still adding old photos since the last album crashed so bare with me for the rest. Here is the link CLICK

White Christmas...Almost

2010-12-28T16:47:00.005-05:00

Christmas went smoothly for us. Tim and I worked through most of it, but I was lucky enough to have Christmas off and I will work New Year's day instead. We had our Christmas family dinner on the 20th because it was the only time Tim would be up and ready for dinner. Working nights means that when he wakes in the early evening, the last thing he wants to do before work is have a big meal. I cooked a turkey and Ham and we sat at the table doing the usual Hartung tradition of popping Bon Bon's and wearing the silly paper hats! It was a challenge to find Bon Bon's in New York, but I found some that were imported from England for a reasonable price. Christmas eve we joined the New York Aussie's at "The Australian" Bar and enjoyed an awesome Aussie dinner, thanks to Matt...the boys ate Kangaroo...but I refused to...I love Kangaroos too much! Christmas day we spent with Jennie, Alyssa, Sophie, Steve, Amaris, Ada & Papa in Brooklyn. As usual Jennie cooked up a storm and we had a great feast. The boys were thrilled to bits with their gifts, thank you to everyone who sent them presents, we truly appreciated it. The day after Christmas was our first New York dumping of snow, a blizzard in fact. At about 8pm it was in full force and we ventured out with bear bouncing around like a kid. For the first time I heard thunder and saw lightening during a snow storm and the snow was almost completely horizontal as it fell from the sky. I wanted to take photos but I didn't want the camera to get ruined, so here's a photo the next day of 78th Street. Click on the Photo to make it larger. I am recovering from a horrible cold, so I didn't get to Central Park yet, but no doubt there will be more opportunities for snow photos in the coming weeks. Dylan continues stable on the IMC-A12 study each week. He is feeling good except for the fatigue, and is enjoying his home schooling with Susan. Dylan was very excited with the news of another "God Sister" if that's even a term...His God parents Grant & Cheryl had a beautiful baby girl who they named Sia, we can't wait until the day we get to see her and her sister Ava, who all live in Sydney now. We wish everyone a safe and Merry Christmas as well as a happy New Year.

Dylan's Drumming Debut

2010-12-02T21:24:00.004-05:00

Dylan played the drums for an audience for the first time ever this evening at the Ronald McDonald House. We all attended the "Light a Light! Share a Night!" event and both Cain and Dylan played along with the New York Pops for those who came along. Dylan was very nervous but did great. He suffers from fatigue so he found keeping up a struggle, but he soldiered through after a long day at hospital today. Cain of course did wonderful as always. I know that Dylan's uncle and grandfather would be very proud of him playing the drums, as they too are great percussionists. Seems our family is very musically orientated, however I didn't get those genes and have not a single musical bone in my body, so I am very happy that both my boys have found the magic of music in their lives. It did bring tears to my eyes watching them both at the same time, that is what was so very special about tonight. Thank you to the Ronald McDonald House and the New York Pops for everything they do to encourage and give the gift of music to both of their lives. I am still sorting through photos to add to Dylan's photo page and will let you know when it is complete, but for now here is Dylan at the drum kit this evening.

Hospital Reality

2010-11-22T06:50:00.005-05:00

I am sitting here at the hospital nice and early waiting for them to prepare Dylan for his surgery this morning. I know a lot of people are wondering what he is having done, but let me tell you that it is not cancer related, however his surgeon Dr LaQuaglia is performing the surgery. It's an embarrassing procedure for Dylan so I am not going to spell it out for you, let's just use your imagination! Anyway, I was just prompted to write, it helps me sometimes. I just saw a little baby, maybe 4 -5 months old here with her grand parents. The nurse came up and asked what she was having today and they replied chemo. They went off to get her port access and my eyes welled up. I try to get a tough skin seeing all this, but even after 6 years it still so hard to see. Poor little baby, knows nothing of life yet except hospital, sickness, needles and pain...I hate it. Why does this happen? I guess we will never know why, it's just so much harder when this happens to children, cancer REALLY sucks! Dylan is nervous but sleeping on the sofa in the waiting room right now. He will be fine in about a week, and I am sure he will enjoy my babying while he recovers. It's Thanksgiving this weekend, a holiday not celebrated in Australia but has now become one of our yearly customs too. We plan to join another "cancer" family for a great meal and good company. I am thankful for Dylan still being here, and for everyone who has helped and continues to help us get through each day. It amazes me how some people are still in strong contact with us, even though they have never met us or Dylan. One thing this whole "cancer" world has taught me is about human kindness, these people are true angels, giving support to us without anything obvious in return. Thank you to everyone, you know who you are, your the ones who remember Dylan's birthday, send a card every holiday and email us regularly just to remind us your here with us as we fight the fight...Thank you with huge hugs. Well back to the hospital reality now...

Almost 12 - Can you believe it!

2010-11-08T21:47:00.005-05:00

Four months since I last updated? Wow, doesn't feel like it at all, guess life has kept me busy! Dylan is doing well. His last scans showed stable disease and we are already up to the next session of scans again this week. He contunues the IMC-A12 study with minimal side effects ~ just fatigue and some loss of appetite. Dylan decided along with out input that another year in regular school would likely result in poor attendance and health risks due to his compromised immune system, so he is now having home instruction/school. He has a lovely teacher who comes each day for an hour and already he is excelling in leaps and bounds even more than when he was in regular school. Dylan also has his hearing teacher twice a week and is thrilled that he has his teacher from a few years ago once again. Drumming has now become one of Dylan’s favorite activities, 2nd to the Playstation of course! Dylan has music class each week at the Ronald McDonald House with his brother Cain. Speaking of which, Cain has now informed me that he wants to pursue being a Professor of Music. I am completely blown away with his extreme talent, he has come such a long way and composes some great music all on his own. Cain really has grown into a man now…he makes me feel old! Wednesday 10th November Dylan will turn 12 and on the 15th Cain will turn 16. We feel so blessed to still have Dylan celebrating birthdays and to be honest, 12 is a birthday that I thought I would never see, years ago. Tim and I continue to work and now with the holiday season upon us, our schedules seem to be crazy! So many appointments and things to get done. Dylan needs to see the Audiologist, Pulmonologist & Ophthalmologist , all just routine check ups. Cain has his braces to get put on and Dylan has a minor surgical procedure (Unrelated to cancer). Thank you to all or friends and family who help us so much by sending the kids birthday and Christmas gifts. We are doing the budget thing and struggling financially, just like many other families living in a big expensive city. To top life off, our lease is up and they want to hike the rent up by almost $200 more a month! I am trying to negotiate the rent increase as we struggle to make ends meet as it is already and this increase will hit us hard…I am not sure how much more we can tighten to belt to get through each month. From what I hear it’s just as insane in Australia as here, as far as cost of living goes. Our friend Skye moved back to Oz 6 months ago and just came over here for a 2 week visit. She made us soooooo homesick, but it was great to hear about all the changes she noticed since moving back. Bear is getting closer to being a therapy dog and he is still the love of our family, he is just so great at relieving all of us of anxiety and stress…pets really are great medicine. Summer is truly over now, today they even had snow flurries in Long Island! The hats, gloves and scarfs are now officially a part of everyday clothing.

Please send your prayers to all the families fighting childhood cancer. Even though we are not at the house anymore, we still are in contact with many families. We sadly lost Ethan and Morgan to Neuroblastoma last month along with many others. We continue to fight the fight, and try and balance “normal” living with the cancer world in which we live.

Hard past few days

2010-07-25T17:56:00.005-04:00

You never know when it will be the last time you see somebody. I mean, I have known in cases when families return home with their child on palliative care. When you hug and kiss them goodbye knowing that you will never see their face again. But sometimes people leave this world unexpectedly, tragically and too soon. On Friday we lost someone that we had seen only 2 days before, someone who we had not known more than a few years yet someone we felt like we had known a lifetime. This person always left me feeling better about myself after deep conversations, someone who was very wise but didn’t realize it, someone who had a huge heart and someone who both Tim and I had a strong friendship with and will never forget. This person was Megan’s father. Megan came to the RMDH with an obsession with Dylan, she was so cute and told us she was going to marry him one day. Dylan and Megan were partners at the MSKCC prom one year and I recall a time that Megan told the Nurse at MSKCC that if she could change her last name it would be to Hartung. This bond naturally led Tim and I to be good friends with Megan’s parents, Mark and Donna. We would always joke with Mark about him being our future brother in law. Megan’s family had more challenges in life that I believe more than most, and on top of this their beautiful daughter Megan was diagnosed with Neuroblastoma. Tragically Mark was found by his wife Donna, in their room at RMDH, Donna had just returned from Megan’s scans with good news results and couldn’t wait to tell him. Mark had been in terrible pain for many years after an accident and more surgeries than anyone I have ever met. Tim and I rushed to Donna and Megan's side not more than an hour later. As we walked to the RMDH, we saw a few parents out front who just looked at us and lowered the faces as we passed, not a word spoken as we entered the elevator or as we passed staff and friends in the hall. We all silently spoke with the looks on our faces, Mark was loved by many, and most knew how close our families were. We are going to Miss Mark so very much, and I cannot even imagine how much Donna and Megan will miss him. Megan is a real Daddy’s little girl, and Donna has just lost her best friend, our hearts are just breaking for them. I will miss the emails and texts he use to send me every few weeks saying what great parents we were and how proud he was of us getting our own apartment and not giving up. He always praised us so much, and you knew it was straight from his heart. Please pray for Donna and Megan, this world can be so cruel to such good people, I don’t know why, all I can say is it’s just not fair.

Dylan’s scans gave us a scare this week. Dylan was scheduled for his treatment on Thursday but it was delayed due to pending MIBG results. Finally hours later Dr Modak said that the scan had shown possible progression with a new faint spot seen on the skull. Dylan was sent to MRI immediately. Treatment was cancelled and we were left with the agonizing wait on the MRI results. Thoughts filled our minds all night, neither one of us could sleep. Was this the beginning of the end? Chemo doesn’t work so will we even try it again and put Dylan through that? What would our options be, so limited by only one bag of stem cells left. We told ourselves it will be how it will be, we just need to know one way or the other. The next day I had to go to work, cell phone by my side and anxiously waiting a call from the hospital. By 10:30 a call came through, that the MRI was negative and to bring Dylan in now for his treatment of IMC-A12. I called Tim right away who was also waiting for the call. He saw Dr Modak who said that he looked at the MIBG scans himself and could not see what the radiologist was suggesting was there and that since the MRI was negative, he feels it was no concern for disease progression. Wow, now we can breathe again, a bit, anyway. Tomorrow the 26th July Marks Dylan's diagnosis anniversary...he will have had Neuroblastoma 6 years.

Cain left for Music Camp this morning, he was up at 6am with bags packed and his bass guitar. He will be gone 2 weeks, and I miss him already, but I am glad that he has a vacation for the summer, and can share it with his best friends from the RMDH.

Things are Great - Not much to report

2010-07-20T21:38:00.005-04:00

We are doing well. I know it's been a long time between updates, but to be honest, not much is happening. Work, hospital, work, hospital seems to be the main schedules in our lives. Now that we have left the Ronald McDonald House, we do not have many adventures/activities or meet celebrities, life is pretty normal now, and that's just fantastic! Cain and Dylan still participate in the weekly band lessons at the RMDH but that's about it. It's summer vacation so the boys do not have school now until September (which will be the new school year) Dylan is continuing his IMC-A12 clinical trial/study every Thursday with a 1 hour infusion, however we are usually in the hospital 4 or more hours. So far we are about to start cycle 4 and have had almost no side effects! The only side effect we have noticed is a low platelet count and neutrophil count, but not to a point where he needs supportive care such as transfusions or GCSF to boost his counts, so we are very grateful that this seems to be the only side effect. The pain in Dylan's legs has improved, he has Physical and Occupational therapy every Tuesday to help with his walking and he is having ankle braces made, that should assist with training his feet to not turn inwards and alleviate the discomfort he has when he walks. The weather here in New York has been consistently hot for many weeks now, so we head over to the public pool at least twice a week which is also helping Dylan with his leg/muscle pain. What's causing this pain...not sure, but it may be late effects continuing from the Perifosine & Temsirolimus study or because he walks with his ankles turning inward. Cain is off to music summer camp this weekend for 2 weeks, he is so excited to be returning there again this summer. Dylan really wanted to go to summer camp also but unfortunately he is unable to miss his Thursday treatments and he did not want to go to a day camp. On a happy note though, Dylan is over the moon about having the TV and playstation all to himself while Cain is at camp! Our dog Bear is doing great, a few more months and we can have him assessed as a therapy dog and take him to the Ronald McDonald House for the children to enjoy. Tim and I are working and juggling hospital/kid schedules, but we get there in the end and are keeping our heads just above water with the rent and bills. We certainly are much happier having some financial independence, as hard as budgeting is. We feel like we are the closest to a "normal" family as possible right now, and we know just how blessed we are that Dylan remains stable. After a long 5 years at RMDH, living in one room and having to rely on fund raising, we certainly appreciate living the "normal" life again. This week is scan week, so I will post the results next week. So far Dylan's cancer remains in his hips/pelvis/spine/bone marrow and femur but it just sits there, not getting any worse or better. His PET scan does show that this is live disease, so that cloud still sits above us, with the threat of one day progressing. For now we enjoy life, not take things for granted and live in hope of a cure. Oh I almost forgot...Cain cut his long hair! Now I can see his handsome face again...mum is pleased!

I thought I would end this journal entry with this quote I found and really liked...

Be kinder than necessary, because everyone you meet is fighting some kind of battle!

IMC-A12

2010-05-13T12:07:00.004-04:00

Dylan is doing well, he finished the Perifosine/Temsirolimus study after 8 weeks and his work up scans showed a stable result, with no change to his cancer. We decided to cease the study due to the intense leg pain that Dylan experienced and because it did not appear to do anything positive for him. We are now on a new clinical trial, which involves an infusion once a week. This study is a Phase II called IMC-A12 Anti-IGF-I Receptor Monoclonal Antibody. It is a monoclonal antibody that is made in the laboratory and can bind to substances in the body. IMC-A12 blocks the action of a protein needed for cell growth and may kill cancer cells. It is a type of insulin-like growth factor-1 receptor (IGF-1R) inhibitor. Dylan appears to be tolerating this treatment well, his only side effects are a decreased appetite and body itching in the evenings.

Dylan had a visit from his God Father Grant, who came to New York on business from Australia. Dylan was very happy to see him to say the least. They had their usual day at Dave & Busters together, which seems to be their ritual when Grant comes to visit now. I know that Grant eagerly checks Dylan’s website every morning for an update…so hi Grant, sorry for the delay!

Cain is doing great, he played at Radio City and Carnegie Hall in the past 3 weeks. His Bass Guitar playing is continually improving and his dreams of becoming a professional musician are closer each day. The band also had another recording done and Cain will also go to “music camp” again this summer for a few weeks. Not much else is going on in our world, just working and running a household like “normal” people which we are all enjoying very much, it’s amazing how much we take it for granted until your thrown into turmoil. The weather is getting better, so we are venturing out doors more often, which our dog Bear absolutely loves because we try and take him with us everywhere when possible.

Zach is in NYC

2010-04-08T18:50:00.008-04:00

Dylan is continuing on the Perifosine/Temsirolimus study. After week 2 he started to get pain in his legs and now that pain is quite severe. He cannot walk more than to the end of our street without the need for a wheelchair, thus school has been put on hold until the end of the 2nd cycle as the stairs at school are completely out of his capacity right now. Depression is the other side effect we did not anticipate. He is very tearful over little things and is loosing interest in the things he use to do to occupy his time. His ANC also drops and requires GCSF injections from time to time to get those neutrophils back up, but the rest of his blood counts are ok. We sat down and talked about the side effects at week 4, I explained to Dylan that he had a choice whether to continue the study and provided him with the options that were in front of us. Dylan being the medically wise soul he is, decided to push through and complete the 8 weeks (2 cycles) of treatment until the scans are due to see if it was worth continuing. We are now at week 6 and scans are scheduled for week 8. The weather has finally warmed up and we now have the option to venture out when time permits. Dylan often accompanies me and Bear to the dog run and it does give Dylan a smile watching the dogs play, they live in the moment just as we do these days. Bear is great therapy for our whole family, and he is everything we wished for in our family dog. We still have very strong ties with the Ronald McDonald House even though we now have our own place. Regular visits from other cancer families always visit when they are in NYC. Most recently we saw Skyler and right now Zach is in town (photo above) We also get to stay in touch with families during our weekly hospital visits. Sadly this tie also means we continue in the loop of loosing children, the tears still fall and the pain in my heart feels the same as it did when I lived in the RMDH for 5 years. Most recently we lost Jess and Andrea, and over the next 48 hours we will loose Sandra. Sandra's passing will be a huge loss for Cain as she joined the band group regularly and they made good friends. Sandra is blessed with an amazing creative talent, she draws, paints and plays the piano. I just broke the news to Cain in preparation and he stayed very quiet and I could see his eyes tear up but he held them back. Cain holds a lot of this cancer life deep inside. He never expresses his pain but I know that in his own way he deals with it, particularly by throwing himself into his bass playing. He said that the band will dedicate the recording coming up in her honor. You can read about Sandra in this RMDH publication, she is on the cover. Click HERE ( story on pages 8-11) Please pray for her family for strength and peace. Also pray for little Ylaria a beautiful little girl with the cutest smile ever, the sweetest and most loving family, they struggle with very hard decisions and news no one wants to ever hear. I need to update the house heroes page, which I have to admit I have been avoiding, the pain in my heart is horrible, moving children I love to the Angel's part. Jess returned the the RMDH on a regular basis, was with us at Disney World and shared our love of animals. At the same age as Dylan and fighting for so many years, brings a harsh reminder of fears that I try my hardest to push away every waking day. Andrea was with us the day Dylan met the Pope, one boy and one girl were chosen from RMDH to meet the Pope. Naturally a bond was formed between us and her mother and I made good friends. Andrea also shared a love of animals and was always involved in the therapy dog events. I ask myself why these children keep dying, why I feel like I cry every week over yet another loss. I try and mask it with wise sayings, comfort myself with knowledge of a better life after they pass on, but you know what, at the end of the day it sucks....it sucks big time.

Perifosine & Temsirolimus Scheduled

2010-02-25T01:20:00.005-05:00

Time for an update. Well we re all ok, apart from the usual winter cold & flu’s effecting all four of us and Dylan’s various body pains that seem to bother him one week to the next in different areas. Dylan had scans last week, in preparation to start the new Protocol of Perifosine & Temsirolimus. All is stable but he did have an elevated liver reading, so the study was postponed until this week pending liver blood results. These tests showed that his liver is now in a range that will allow the study to commence, and Dylan is scheduled for the first infusion this Friday.The liver issue was most likely related to his recent antibiotics necessary for his sinus infection.

Another Australian NB family emailed this story to us about a famous Australian Red Symons. This video speaks about his inspirational son, but what really made me gasp was the errors made by the RCH in Melbourne (The same hospital that use to treat Dylan)

Sam’s Story

Over the past few months I have been saddened deeply by several children/young adults who have passed away, one of which was Eric who came to visit Dylan at RMDH. Many children have also relapsed, some who had been NED (no evidence of disease) for 4 or 5 years. Children we know very well. Please pray for all the kids who are facing relapse. It really is a horrible emotional turmoil, and like being diagnosed all over again. It just reinforces the fact that this cancer cloud hanging over our heads is forever and very real, whether your NED or not. Does being NED really mean anything anyway? We have never heard those words about Dylan, and of course we long to hear them, but I can’t say that it will make me ever believe that the fight is over, nor relieve the fears of loosing my son. We are very fortunate and thankful that even though Dylan has never been NED he has remained “Stable” since being in the care of MSKCC and his Neuroblastoma has not progressed. This has put us in a plateau state and not given us the harsh roller coaster ride that many other families experience. But hence that cloud hanging there, when will it progress? Tomorrow? Next year? Never? Will that cloud ever be replaced by the sun again?

My SNN experience

2010-01-29T19:05:00.005-05:00

I had an eventful afternoon. I have been very busy these past few weeks with doctors and dentists for myself, Tim and Cain since we now have medical insurance. I had not seen a doctor or a dentist for 5 years for general exams. I found out I have a heart murmur which added a cardiologist appointment to the long list of medical check ups. So today I was returning from some weird nerve test the doctor ordered, followed by a visit to the eye doctor. I returned home about 2:30pm, blinded by the eye drops the ophthalmologist had put in, I get to the entrance of my building and there is Tim with 2 plain clothes police officers! Turns out the police were undercover and were in a taxi (unmarked police vehicle) and from our beloved 19th precinct, who know us so well from the Ronald McDonald House.

They had arrested a guy at our stoop, and they asked me if I knew a black man by the name of ......I replied no. I remembered seeing him when I left for my doctors appointment at 8:30am. He was well dressed and I gave him a smile as I headed out, he smiled back. I always smile at people on my stoop, as most are my neighbors or their friends and it's good to stay friendly with the neighbors! Anyway, they arrested him (not sure what lead the police to him) and he had a piece of paper in his pocket with several peoples names, addresses, dates of birth and social security numbers...and mine was one of them!!! When they arrested him, he said he was waiting for UPS. The police told me to put a flag on my credit and to request a credit check to see if he has stolen my identity. I had all my cards, nothing was missing.

He did not have my credit card number anywhere on the piece of paper but he had my date of birth and my social security number. This leads me to believe that this was not something stolen from the internet ie: credit card purchases. I have never used my social on the internet and when you buy something they usually don't ask your date of birth. I have not had a social security number long, I was not eligible for one until early last year. So I have only used my social for a few things. Most recently doctors...Every time you go to a doctor or dentist, it's the first thing they ask you. In the past 2 weeks I have given it to 4 or 5, some even ask you over the phone when you make the appointment! I assume that either someone in the doctors office sold this information to someone or they did not keep the information safe. Maybe the doctors office was broken into or their computers were hacked into, either way I believe it was breached at one of these doctors offices.

The police took him away, and they told me they would call me later and keep me informed. About an hour later UPS arrived, with a package. I signed for it and took it to the kitchen table. I was not expecting any deliveries, so I knew this was what this guy was waiting for. I recalled the police officers saying he could be using my address to ship drugs to. I was very curious and figured it was addressed to me...so I took a pair of scissors and carefully opened it. There were 3 very expensive camera phones, and an invoice with my name on it!!! That was not very exciting but they were very nice phones! I quickly called the precinct and they arrived 10 minutes later to pick it up. They told me to follow up with T-Mobile to see what happened and to call them back when I get details. I called and this person had opened up an account in my name for 4 lines. I was connected to their freud department and after telling them the story, they told me that they had opened the account over the phone, all they needed was my name, address, social and date of birth!!! No payment was made, instead they bill you (me) for 3 $400 phones! I can't believe how easy it is, it's really scary!

These companies need to be held accountable, how do you just send out phones and create an account without photo ID? Even UPS, they get you to sign but they have no idea who you are, they don't even ask your name, so whats the point in signing? These phones were probably going to be unlocked and re-sold but what if they were going to be used for another more serious crime or even for terrorists...ok maybe been watching too much Law & Order. Seriously though, these companies make it too easy for criminals. Now I am left with waiting for my credit report in the mail, hoping that more accounts, purchases or credit cards were not opened in my name. Thankfully they caught the guy, and now have a police report to prove my identity was stolen. I just have to scourer the country for accounts connected with my social security number that I did not approve and get them canceled...which will take many calls, letters and time to do. I cannot believe that it is so easy to have your identity stolen.

SNN Fraud

Poor Tim, he was coming out of our apartment and stopped by 2 police asking if he knows a Melissa Hartung. He said his heart stopped, he thought something bad had happened to me.

New times ahead

2010-01-15T17:17:00.002-05:00

We are all doing great and we love our apartment, life has certainly changed for us in a positive way and we are lapping it up. I have been crazy busy but put aside this afternoon for a website update as I know many of you have been waiting. Dylan had scans done and all is wonderful. His MIBG scan shows he continues to be stable and his urine markers are again great at VMA 12 and HVA 20. Dr Modak also mentioned that his PET scan shows that a small amount of his disease is either dead or mature! Dylan continues with Perifosine and today I recieved notice that the other drug that the doctor wanted Dylan to have in combination with the Perifosine is now available for trials. We will meet next week to set him up on Temsirolimus infusions once a week to see if it has an impact on his disease. Dylan is in school sometimes...he tends to take a lot of time of for one reason or another, colds, pain or any other issue he can find to get out of school. Of course most of the time it is a legitamate excuse but other times he just wants to be home. It is a big adjustment for him, but we keep pushing him and hopefully he will enjoy school more and more, especially now that we have as close to a normal lifestyle as possible since he was diagnoised in July 2004.
Cain is enjoying our new living quarters too, he still goes to the Ronald McDonald House to play in his band and hang out with his friends. Tim and I absolutley love having our "own" place and our "own" room and a "real" bed instead of the fold out sofa we have slept on for so many years. I have to admit that I don't miss the Ronald House. It is a wonderful place and without it we would not have made it as far as we have, but it does take it's emotional toll on you when you have lived there for almost 5 years. I do miss the other parents but many visit us when they come to NYC so our friendships continue. The boys are super happy that we also now have a puppy! His name is Bear and he is a Cockapoo ( Cocker Spaniel X Poodle) He looks just like a bear cub, hense his name. He does not shed fur which is an added bonus. We got him through my work from a couple who had decided that a puppy was not such a great idea for them, so I brought him home and we love him to bits. Dylan loves to walk him and it's a great way to get Dylan moving more. I am off to the dentist next week for a root canal :( Dylan was so brave when he had his done but I do not posess the same fearless attitute! I am working on the photo album, I do apologize but it will be a long process of downloading and uploading from the old kodak gallery. Please continue to pray for all the children fighting cancer, even though we are no longer at the Ronald McDonald House, not a day goes by that my heart is not heavy for all the families that continue to reside there. If anyone needs to contact us, our email address is: everythingspossible@live.com

Our own place in time for Christmas!

2009-11-24T15:11:00.003-05:00

As many of you know, earlier this year Tim and I were granted work authorization and are now both working! Finally we have found an apartment of our own in New York and move out from the Ronald McDonald House mid December. After almost 5 years we are in a position where we can at least leave the institutionalized living of the house and live a semi-normal lifestyle. We are so excited and nervous all at the same time. The kids are just as excited, they will share a room and we will have our own kitchen again!!! For Tim and I we will have the stresses of bill/rent paying, working and balancing the kids at school and hospital appointments, but these are all normal stresses and we much rather have them than the stresses of living in the cancer environment 24/7. We will certainly miss the Ronald House very much, but we are close by and the kids will still participate in the karate and music classes. It's huge having to start from the beginning again, we have only our personal belongings, so we need to get furniture, beds, TV's and kitchen ware. With working and apartment hunting and now moving, I have lapsed on updates and emails, but I am slowly catching up now. On returning to the web I have discovered that Dylan's photo gallery is no longer available, kodak gallery closed that function :( Bare with me over the next few weeks/months as I re-build a new gallery on another photo hosting website. Thank you to everyone for the boys birthday wishes, cards and gifts. They had a great day and we took them to Olive Garden for dinner (their favorite). Cain inherited Tim's prize possession that my brother sent to him from Australia...Tim's Rickenbacker bass guitar from his "rock star"days! Cain is thrilled to bits to have it. Dylan is doing well, he missed heaps of school due to a lingering cough that was cultured and came back as Rhinovirus (common cold) Dylan takes so long to recover these days. Last week he had his H1N1 vaccine (killed version) and today he returned to school. He continues on the Perifosine until his next work up and then we are anticipating starting the vaccine study, which is approx almost a year of treatment. Until my next update, we wish everyone a happy Thanks Giving and pray for all the children fighting this monster.

My best friend Joseph

2009-11-20T12:00:00.008-05:00

An amazing thing happened today, which has sparked my will to write an update. I have been avoiding an update for a few reasons and one of them was because I did not want to write about the passing of Dylan’s best friend Joseph, it just so painful. This loss has affected me dramatically and I have struggled to hold back the tears each day. A lot of this is because of our hard decision on whether to tell Dylan or not. Usually we tell him but in this case we have been seeking advice and up until today were adamant not to tell him. On the day I found out that Joseph had passed, it was Dylan’s 11th Birthday. I spent most of the day locked up in the bathroom streaming tears and hid from Dylan while he played with his birthday presents. Then by afternoon I sucked it up and we went to Dylan’s favorite place for dinner and a trip to Toys R Us in Time Square. That night I said to Joseph “I don’t know how to tell Dylan, I don’t think I can”. Well this morning, for some strange reason and with little thought, I told Dylan, I sat him down and told him that someone he was close to passed and how I had been trying to keep it from him. When I told him he said that he had figured because when he saw Joseph last time, he was very skinny and did not look well. He cried for about 30 seconds and then looked at me and said “It’s ok cause he is with Jesus, it’s really great there!” Now I am not very religious but Dylan is obviously, so I hugged him and said yes, he is ok and one day when you’re really old you will see him again. We went on with the rest of our day, I asked a few times throughout the day if he was ok, and how he felt about Joseph and Dylan responded in a calm and very matter of fact way that he was fine and it was ok. Later this evening, Dylan and I went to the lobby and as the elevator doors opened, guess who was there…Joseph’s grand parents! As we locked eyes I saw their concern, so I immediately told them it was ok…Dylan knows. They told me how worried they were to see Dylan and what they would do and say when he asked them for Joseph. I felt a flood of comfort, somehow I feel that Joseph encouraged me to tell Dylan today, knowing this would happen. He had spared his grandparents the pain of having to pretend Joseph was ok and saved Dylan the shock if he figured it out. Thank you Joseph, I know now in my heart that you are ok, that you’re here watching over and now I feel I can move on and so can Dylan. We will miss you so much, forever in our hearts.

Drama after drama but all is fine

2009-10-23T16:56:00.003-04:00

We are still experiencing internet access issues hence the delay in journal updates. Dylan’s sore foot turned out to be a stress fracture which has completely healed now. The lump on his shoulder was accessed by the surgical team who felt that despite the scan results “unidentifiable soft tissue mass” that it feels like an Osteochadoma and that surgery or biopsy was not advisable. Back to the Neuroblastoma team who decided to rescan the area in 3 months. Between all of this and earlier this week developing a cough, Dylan has missed heaps of school again this year. Dylan had his regular flu shot but cannot have the current H1N1 (swine flu) shot until they release the “killed” version which should hopefully be next month. Last night we had another scare, Dylan had complained that his upper right arm hurt the night before, and last night he noticed it was shaking. After 15 minutes it was still shaking/trembling so I called Urgent Care who wanted him seen ASAP in case he was having some kind of seizure. After approx 50 mins the shaking stopped. A CT scan was done, showing a normal result. The Neuro Oncology team assessed him thoroughly and contemplated admitting him, but later discharged us after midnight. Today we returned to hospital for an MRI which again came back normal. After another consultation and assessment by Neuro Oncology, it was determined that the most likely scenario was the Wii. Yes Dylan has been playing his Nintendo Wii more frequently over the past 2 days and we figured that he must have strained the muscle in his arm causing it to shake, like when people do weights, sometimes your arms feel shaky etc. I am thinking that due to treatments and Dylan’s unwillingness to be physically active, that his muscles and bones are so weak, that even the smallest amount of strain can cause severe issues, like the stress fracture in his foot, that happened after starting school and carrying a book bag up 5 flights of stairs. So we continue on the Perifosine study, last week’s scans showed a stable result apart from a stone in his gall bladder that showed up on the CT scan. Dr Modak said he will discuss with Dr Kushner, the possibility of Dylan being eligible for the new Neuroblastoma Vaccine study that recently opened. Stem Cell harvesting is now also back on the agenda after determining that the lump on Dylan’s shoulder was not disease progression. Dylan had us all in tears of laughter the other night, although those who have never had a CT scan or are not cancer parents won’t get the joke. Dylan was sitting on the toilet and he left the door open. We then hear him say “I am having a CT poop!” We responded with “What do you mean?” Dylan then paused…and we hear…”Breath in…Hold your breath” in that mechanical voice you hear when you have a CT scan…anyway we found it hilarious, maybe you had to be there to get the humor! A few people have asked for Dylan's wishlist as his 11th birthday is on the 10th November...the Amazon Wish List link is to the side of this journal entry. Dylan has updated it again himself, Naruto seems to be the "favorite" again this year.

2 new issues

2009-09-21T13:46:00.002-04:00

We have had very limited internet access for a long period now, but hopefully this will be resolved soon now that a new system seems to be in place at the RMDH. I apologize for the lack of updates and edits to Dylan’s web pages including the house heroes’ page.

Dylan started school but only made the first 3 ½ days. This is very frustrating and disappointing to say the least, we were hoping that he would be in school steadily for a while to establish friends so that he liked the whole school thing better as last year he was lucky if he made it once a week and with such poor attendance the other children were not very receptive to him. Dylan has been off school for a week now because he has a mysterious pain on the ball of his right foot, that shoots up his leg. It is a fairly constant pain, he cannot put pressure on it, so to walk he has to turn his foot to the side, and even with no pressure the pain comes and goes at least every half hour. With many flights of stairs to get to his classroom, school is out of the question. So far we have had 2 exams, an x-ray and an MRI of the foot with no diagnosis. Tuesday he is scheduled for a bone scan. Dylan also developed about 3 weeks ago, a hard bone like growth (size of a small peanut) on his left scapula (shoulder blade). It feels hard like bone to the touch, and Dylan feels nothing when it is touched. The first theory was that it is likely an Osteochadoma, a benign bone tumor that is fairly common and only 1% turn cancerous. Most can be left alone unless they cause issues. We had an MRI done but the diagnosis came back as an “unidentifiable soft tissue mass” the team have decided that if they don’t know what it is, it should be removed surgically. We are now waiting for a surgery date from the surgical team. Just yesterday Dylan says the growth on his back now hurts intermittently. There is a lot going through our minds, are these 2 issues related? Is it Neuroblastoma progression? Is it nerve damage? Is it from the clinical trial drug? Is it late effects of previous treatments? Is it non cancer related? Who knows, and until we know exactly what these 2 issues are, a reason will be hard to pin point. This is very scary, we have been, for the most part, on cruise control, no big issues and very blessed that Dylan has remained stable for so many years. His last scans came back stable, with no new disease or problems, and they were done 1 week before we noticed this growth on his back. The inflamed colon issue seems ok, but the diarrhea is still insane, however it has been going on for so many years now that it has become the “norm”.

Cain started his first year as a freshman at high school, so far he says it’s ok, he seems to have made friends quickly, his only complaint is the travel time/distance. He continues playing his bass guitar and their next “gig” will be at the RMDH block party on October 3^rd.

Latest Scans

2009-08-15T13:52:00.005-04:00

Dylan had his work up scans done yesterday and Thursday. Dylan had complained of pain on his right side of his stomach, so after examination, it was around the gall bladder area. Special attention was taken to his CT scan of the area and it appears that Dylan now has an inflamed colon. Not surprising as he has had diarrhea for most of the past 5 years. The team said that if it became worse he could end up in hospital on TPN and IV antibiotics for weeks. Dylan has been on a clinical trial with an oral drug called Perifosine, and one of the side effects is diarrhea, so we have ceased this trial and meet with Dr Becher on Monday. Dylan's diet must be altered and I want to discuss if he would benefit from pro-biotics or some other natural thing to assist in it's healing. Options of "what's next" will also have to be explored once again. No news on the MIBG results or Bone Marrow biopsies but I assume he remains stable. Dr Modak is away on vacation, but when he returns we will attempt the stem cell harvest.

Cain had an amazing time at music camp, he was there 2 weeks and learnt an abundance of music knowledge. Dylan met Paula Abdul a few weeks ago, and has spent time playing with Justin, John, Skyler and Zach, who all came in for their work up's.

Please pray for Owen and Eric, they are both dear to our hearts, battling this monster for many many years, Owen needed a miracle yesterday and Eric needs one today, please find a cure, please stop this heartache!

Summer break

2009-07-15T12:24:00.006-04:00

Hi everyone, sorry for the delay in update, I am taking a well deserved summer website break ;)

Dylan is doing great, the last scans showed a stable result (no change) so that is fantastic! Dylan went to Happiness is camping in New Jersey for a week and had an awesome time, although he missed us terribly and is having second thoughts about returning for another week at the end of the month. After we dropped him off, Tim, Cain and I saw a huge bear crossing the road and when we picked up Dylan he told us not only did he see a bear while on a walking trail, but he saw a mommy bear with her cubs! He also saw wild deer and spent hours swimming in the pool. Right now he is happy to spend as much time as possible playing video games, he felt deprived at camp! Dylan will start school again in September, we all decided that he should repeat the 4th grade again as he missed so much school last year, and Dylan totally agreed as he wanted to stay with his teacher that he knows and feels like he struggled with the school work. As you can see by the photos, Dylan has had many old friends on their 6 monthly check ups arrive at RMDH including Stavros from Greece and Adam from Ireland, both of who are doing wonderful. Dylan's best friend, Joseph is also here for an extended period undergoing treatment, we pray he continues to do well and builds up his strength after his transplant. Kelly is also here having a hip replacement. Cain is doing his usual greatness too, he is bored with being on summer break, but would not swap it for school! He graduated Middle School as you can see by the photos, it's great in America with the whole cap and gown thing...it's not a usual sight for Australians. So in September Cain starts High School in NYC. Cain also has his scholarship for music camp in a few weeks, and will stay for 2 weeks continuing his bass guitar ambitions. It's been busy here, my brother visited for a while, Dylan's Godfather flew in from Australia on bussiness and Bronte Kelly was here with her entire family from Australia while she continued her surgeries in New York. Isaiah has returned home to Australia after a very successful treatment for Retinoblastoma. Cain and the band "Bad Habit" performed for the RMDH and did another recording at a studio, and Tim made a great appreciation award for the "New York Pops" for the time they volunteer to enrich these kids lives by teaching them to play music. We also attended the "Imagine" fund raiser for the RMDH, 4th July fireworks by the Hudson River and MSKCC's prom. Please keep Morgan, Megan, Joseph, Hugo, Sam and Mason in your prayers as they, like many, continue intense treatments for Neuroblastoma, to either get them in a stable or in an NED state.

Thank you to everyone for your continued support, your guest book messages, cards, calls, letters and emails...I am still amazed to this day and the love from those we have never even met and the kindness of those who follow our journey.

Long overdue update

2009-06-01T19:15:00.000-04:00

Wow, it feels like a long time since I updated. We have been doing lots of things. We were fortunate enough that Jack's parents came to the RMDH for a few days before they returned home to England. They had a lovely evening in Central Park, of which many parents, staff and volunteers played baseball in honor of Jack and then his brother Connor and Sister Rhian released white balloons. Each person wrote a message to Jack on the balloons, Dylan wrote about the 24 hour Dylan's Candy bar that is in heaven and that he wants Jack to hook him up with a special discount by the time Dylan gets to heaven (when he's an old man!). A few weeks ago Dylan and the other kids from "Kids Kicking Cancer" performed a demonstration for actor Christian Bale (AKA Batman and John Connor), later that night Cain was in the spot light, performing at the RMDH annual Gala at the Waldorf Astoria. The band was an enormous hit, playing 2 songs for the crowd, including Tommy Hilfiger amongst many other important guests. We also attended the Kids Cancer walk in Central Park a few weeks ago, it was great to see many familiar faces and even Dylan's doctors and nurses came along. Click HERE for photos. We also participated in the Kids Cancer Walk in Central Park, joining many other familiar familes, doctors and nurses. But by far the most exciting thing that's happened since I last updated, it that Dylan's Uncle Rick has come to visit us from Australia! So we are happily showing him around NYC, we even managed to see the fire works last night for the birthday celebration of the Queensbro Bridge. The hospital Prom is on Wednesday so Dylan is taking Megan as his date, he must really like Megan as this will be the first Hospital Prom he has agreed to go to! Dylan's next scans will start on the 19th June.

In honor of Jack Brown

2009-05-03T20:35:00.004-04:00

Left to Right : Jack (England) Dylan (Australia) & Connor (South Africa) United in fighting Neuroblastoma

We will miss you very much Jack, you touched the lives of many all over the world.

Carnegie Hall

2009-05-01T13:29:00.003-04:00

The Ronald McDonald House Band played at Carnegie Hall on April 27th with the New York Pops. Cain and the rest of the crew were over the moon! Everything went well without hiccups. I did get my hands on some photos (shhhh) you can view them HERE. The band has a gig at Radio City next week, with Garden of Dreams. They are a little worried as they are lacking a drummer and have issues with the song and lots of homework. They were going to cancel but I think we have convinced them that all they need is a little coaching on their time management skills. Tonight we will try and get them all to have their weekend homework done and that will leave them with the entire weekend to get into their music ready for the rehearsal on Monday.

Swine Flu has hit many countries and as you have heard on the news many are sick in New York where we live. The current count in the US is 141 and 1 death. It was decided to keep Dylan home from school this week but I think we will let him attend school next week unless things change. The swine flu link above, shows current information from the CDC. Today Dylan had a PET scan to finalize his routine work up, he is doing great and continues on the Perifosine treatment.

Please pray for all the children, but these 5 brave souls need special prayers at this time. Jake is having high dose ICE chemo, Jake has been battling NB for several years and is good friends with Cain, we just love him to bits. Mason relapsed and is now in hospital with fever and neutropenia after chemo along with Dylan's special girl Megan who also relapsed and now will spend her birthday tomorrow in the hospital instead of the planned dinner date with Dylan. Dylan's best friend Joseph in Texas is also in need of prayers, he is starting to produce his own bone marrow and after his donor transplant, this is not what they want to see. He will need more chemo now, more hospitalization and possibly more donor marrow. Joseph's condition scares me terribly, we all love this boy so much. The one that needs the most prayers right now is Jack from England who has spent many months in Vermont having treatment and clutching at new clinical trials offered there. I just heard that he is in ICU, septic and the Neuroblastoma is consuming his little body. He is in a lot of pain and his family continues the roller coaster they have been on for so many years. I just pray that he can get the pain levels to a comfortable state and that his parents find some peace during the hardest period in their entire lives.

I have added a few more kids to House Heroes Page, so please check them out.

Last Saturday we joined the Parkinson's walk in Central Park to support our dear friend Kevin who lost a brother to Neuroblastoma 30 years ago. Kevin is now battling Parkinson's and is only in his 30's. The day was wonderful, it was a great sunny Spring day and it was really nice to see Dylan learning how it is so important to support other incurable diseases while battling his own. Later that afternoon we went to The Australian to join fellow Aussie's for Anzac Day. Photos can be viewed HERE

Another blow for the Maynard family in Long Island. As many know the Maynards are not only Cain's god parents but also our guardian angels during our stay here in New York. Lynn had a stroke last year and is still struggling with rehab to get herself back to functioning without assistance. Lynn's parents returned from Australia to spend the next 6 months helping Lynn, but now Lynn's mum, June, has ended up in ICU after emergency surgery involving a kidney stone blocked and ruptured. I always question why bad things happen to such good people, life can be so unfair. Please keep Lynn and June in your prayers also.

Bronte Kelly from Australia is arriving in NYC next month for follow up surgery, we are really looking forward to seeing them again, and are so glad they raised enough funds to continue her much needed care.

Isaiah from Australia continues his treatment here in NYC, look for their story in Australian magazines in the coming weeks. Please pray that they can continue his life saving treatment without the continued financial woes that international families continue to battle day in and day out. This added stress is a parents nightmare. I still get so angry that a child's life comes down to a dollar sign, what a very sad world we live in.

Work up week

2009-04-24T17:56:00.005-04:00

What an eventful week. Dylan had a full work up this week, with a karate demonstration mid week to break it up. Karate was great fun, Dylan and I joined the rest of the "Kids kicking cancer" team for a demonstration in New Jersey at The Robert Wood Johnson Foundation. Dylan did so well and is just awaiting his arrival of his orange belt which he is very excited about.

Today we finalized the week with a MIBG scan and CT scan. Dylan had a restless nights sleep and so did I. Something just made today's scans a higher than normal anxiety level, I just put it down to the many friends we have, who have received news of relapse in the past few weeks, so I guess it had us all on edge. By afternoon we got a call from clinic that the CT scan showed a "spot" on his lungs and they wanted him to come in again so they could listen to his chest. My heart dropped and we went back to clinic. I knew that the last CT scan showed a "spot" on his lung and they concluded it was some type of infection and not disease. Hearing the word "spot" today freaked me out. So we sat in clinic, I had thoughts racing in my mind, was it the same "spot" and if so was it bigger, was it disease? What is it? Was it on the MIBG scan too? Then Dr Modak came to see us, he explained that there is nothing to suggest it is disease, in fact most likely it is another infection that he has no symptoms of and will just disappear on it's own. The "spot" was not in the same area, and the last one had cleared up. Just to be sure, we went and had an x-ray done too. Then Dr Modak read the MIBG scan and said it shows stable disease with slight improvement!!! YAY!!! His urine markers also came back VMA 13 HVA 24 which is basically the same as the last urine tests done in September 2008. All is great then, false alarm with the lung and better results to the last work up. Dylan will have his bone marrow biopsies done on Monday. For now, the treatment of Perifosine will continue.

On Monday April 13th, we had a celebration of Devin Reid's 21st birthday. Devin would have loved nothing more than to spend his birthday in a NYC bar, so we gathered parents from the RMDH and had a toast to Devin. We released 21 balloons and it was a great way to remember his life instead of mourning his loss. You can watch the video HERE and view photos HERE

Cain plays at Carnegie Hall this Monday night, he is so excited, I am just disappointed that I cannot take photos or video to show you all, but I will make sure I write up a blog on the evening.

Dylan features on the RMDH Imagine fund raiser advertisements, I have scanned and the photo and posted it below. It came up fantastic, I just love it.

A small favor to ask

2009-04-15T17:56:00.004-04:00

I have a favor to ask of Dylan's blog reader's. I am missing a lot of news paper and magazine articles that Dylan has been in. If anyone who has kept articles and has a scanner, could you please scan me a copy and email it to everythingspossible@live.com

Dylan is doing his usual greatness! He is enjoying sleeping in now that he is on Spring break and did a couple of days at the Art Class Studio. I will upload photos of his new pieces soon. No dates for his scans yet, we should get them any day now.

A new family who fund raised in Canada to get their son treatment at MSKCC for Neuroblastoma has arrived! It's so wonderful to see other families achieve their goals. This family had contacted us months ago and asked us for advice on how to fund raise. Their hard work paid off and after they had raised the funds the Canadian government changed their minds and are actually going to fund his care. I think that it is so wonderful that their government came to their aid, lets just hope this becomes a growing trend. They do not have a website however they do have a facebook, just search for Hugo Robichaud. You can also read about Hugo HERE

Heavy agenda ahead

2009-04-05T21:05:00.007-04:00

Dylan continues to do great on his current phase 1 study drug Perifosine. The agenda remains, scans will be done at the end of the month. Dylan attended school all last week and next week he starts Spring break on Wednesday. He has a karate demonstration coming up on the 22^nd in New Jersey and shortly after that he will receive his Orange belt. Today we attended the Neuroblastoma reunion party held by the Team at MSKCC. It was a very moving event, so many faces of Neuroblastoma survivors and those who are still in treatment. Many families traveled long distances to New York just for the event. I guess what I brought back from the day was testimony to my opinion of the Neuroblastoma team. Dr LaQuaglia and Dr Cheung both spoke about their reasons why they chose this field of Oncology, in a nutshell they both said that in this field there is hope and that’s what keeps them coming to work each day. Dr Cheung expressed that we have his word that many more promising treatments will be developed in the years to come and that he will continue to move forward to cure. Dr LaQualia said that often people ask him what goes through his mind each time he operates on these children, and his response “the parents, especially the moms” and that’s why he does what he does. Dylan went to shake Dr Modak’s and instead Dr Modak threw his arms around Dylan in a bear hug. It is so reassuring to watch how this team interacts with their patients, their heart is truly behind their drive to do what they do.

Cain is doing amazing, he is so totally devoted to his music. Cain performs with band at Carnegie Hall on April 27^th at the New York Pops 26th birthday Gala. On Friday afternoon, I joined the band to “check out” Carnegie Hall. The visit was to give the kids an idea of the magnitude of where they will be playing. We went backstage, and then watch The New York Pops rehearse for the evening’s concert. Unfortunately I discovered that photographs and video recording is strictly prohibited at Carnegie Hall, so I won’t be able to provide photos to show everyone. However I am sure that we will be able to access photos via the New York Pops, they have people who have permits to take photos for promotional purposes. Dr Sherrie Maricle and Bob Sabin are Cain’s main music teachers, they both continue to tell me how talented Cain is and they want to assist him anyway they can to pursue his music dream. Cain will be performing at Radio City on 7^th May and also at the Ronald McDonald House Annual Gala on May 18th, and I also heard that the band will be going to another recording studio late May. Our agenda is quickly filling our calendar, we also are attending the Parkinson’s walk on 25^th April to support our very dear friend Kevin with his battle.

On internet radio!

2009-03-22T15:25:00.003-04:00

Just a quick update, we were blogtalk radio this afternoon, click HERE to listen. It should automatically play, or just hit play on the player window. After the song the interview starts. Dylan chats for the second half of the show, it was nice to hear him reminisce on past activities that have impacted his life and to hear him talk about his cancer and treatments in his own words. He mentions his dreams to travel the world, his career as a chef, his school and teachers and about his god parents taking him for a weekend in Sag Harbor a few years ago.

Dylan and Cain got the opportunity to meet Australian actors Hugh Jackman and his wife Deborra Lee. They were at the RMDH this week meeting with Isaiah and doing an interview. I was in the elevator with Deborra and she told me to bring the kids upstairs to meet Hugh, her mum and her daughter Ava. Hugh and his family are lovely, very laid back typical Aussie's!

Hanging with the A crowd

2009-03-10T21:39:00.005-04:00

Hi everyone, Tim here. Yes my very first update. Hope I can write as well as Melissa so here goes. Poor Melissa is under the weather right now hence me updating. She has been battling a cold for the last few days but thankfully is feeling a little better today. So where to begin????

Let’s start on the medical side of things. Dylan has completed his first week of the Perifosine trial and so far he has tolerated it pretty well. Today we went to clinic to do a full blood work up to check all his levels. Dylan’s potassium is still on the lower side of normal range (3.7) so we will continue the oral potassium supplement. His liver counts are almost back to normal which is great news. All other blood counts are still looking good. So far the only side effects to the trial have been slight nausea and an increase of diarrhea both of which can be helped with medication. Dr Becher and the team are happy with the way the trial is going but keep in mind it is still very early days.

As for the social side, it has been an interesting few days. On Sunday, Cain, Dylan and I went to Kyle Pena’s 8th birthday party uptown. Kyle’s older brothers Charlie and Michael both suffer from Sickle Cell Anemia for which Kyle was a perfect match for transplant. Their family were guests here at the RMDH for a number of years. We had a great time and met up with Eli and his dad Aaron. After the party we all left together. The five of us caught the subway to 86th street then caught the cross town bus to 86 and 2nd. While we were waiting for the bus on 2nd, a large stretch limo pulled around the corner. The boys started waving to the driver as he waved back and drove past slowly. With this, Dylan started waving his arms around and shouting “aren’t you going to pick us up?” WELL, the funniest thing happened. The limo stopped and started to back up. The bus pulled up behind the limo and as we were about to jump on the bus, the limo driver jumped out and asked me where we were going. At first I didn’t know what to say, then the driver pointed at Dylan and said “where is the little kid in the blue shirt going?” I said that we were headed to 73rd. With that he opened the door and said “jump in and let me drive you there as I have some time to kill before I have to pick up my friends”. This thing was huge!!! The boys had a ball and Aaron and I just looked at each other and laughed. It was fully equipped with all the bells and whistles. Loud music and lots and lots of flashing lights. When we reached 73rd, the driver pulled over to let us out. We wanted to give the driver a tip but he would not accept it so we wrapped it up with one of Dylan’s business cards and one of Eli’s wristbands. Melissa and I laughed about how these things always seem to happen to Dylan out of the blue like that. Aaron and I laughed about what its like hanging with the A crowd LOL. On Monday, I joined another two families, Rob and Zach and Ashley and her mom from Boston and staff members from the house while we attended a luncheon to honor the efforts of all the dogs and volunteers associated with Angels On a Leash program. This program was organized so that patients and their families get to enjoy the health benefits of a dog that has nothing but unconditional love for those around long enough to stop and pat them. Today after clinic, Dylan and I with again, the same families and some of the staff from the house went to Nasdaq in Times Square for the closing bell. Dylan had no idea what it was all about. All he was interested in was playing with all the different therapy dogs that attended as well. I would like to take this opportunity to thank all the volunteers and their furry kids on behalf of all the families here at the RMDH for the happiness they bring not only our sick kids, but for the joy and happiness they bring to the whole family. You guys are AWESOME!!!

Watch the Nasdaq Video HERE

You can see Dylan holding Teigh (Britney Spaniel) and me in the background!

Please pray for all our kids and their families as we travel this road to better days ahead.

Cheers Tim.

New Study Started

2009-03-04T13:37:00.003-05:00

Dylan started the Perifosine study on Monday night. His blood counts all came back good. So far so good, a few dashes to the bathroom in the night but apart from that he seems fine. His root canal is still bothering him, he goes back on Friday to hopefully finish it off. Dylan went to school yesterday but came home early due to tooth pain, he's at school today and so far we have had no calls. You may have noticed many new kids that I have added to the house heroes page. I want to congratulate Karli on getting results yesterday...cancer free! Karli was the 39th child on the study. It is amazing the treatment they are doing here for Retinoblastoma, there are so many children coming from all over the planet for this right now, it's proving to be very successful. I am not that knowledgeable about Retinoblastoma (cancer of the eye) but I do know they are doing a treatment called intra-arterial chemotherapy, that targets the cancer and they access them via the groin believe it or not!

Click HERE for the snow photos at Central Park

Snow day!

2009-03-02T09:09:00.003-05:00

Wow, we woke up this morning to a pounding of snow. Both the boys got up dressed for school, got down to the lobby and we heard it was a snow day in Manhattan. This is a usual thing for many places in America but Manhattan very rarely gets a snow day. This is the first snow day in 5 years! Dylan only had today to go, as the rest of the week is state exams which they have exempt him from and Friday is another dental visit to hopefully finish off his root canal. Needless to say both boys are very happy to have the day off. Tim and I plan to wander down to Central Park for some photo taking, so I will put them up on the site when I get back. Click HERE to view story on the snow.

Sammy Joe

2009-03-01T21:43:00.005-05:00

We just wanted to wish Sammy Joe a very happy birthday for tomorrow. Below you can watch Sammy Joe and learn about his rare condition, making him allergic to light. Sammy Joe is Australian and like Dylan, needs specialized care in America.

Erik's journal entry

2009-03-01T13:17:00.005-05:00

Today I would like to share with you Erik's story and the amazing words he wrote in his journal. Dylan has met Erik in 2007 and it was a great privilege to finally meet him as we had been following his journal for some time. Erik is an adult with Neuroblastoma, he was first diagnosed when he was 6 years old and after treatment had no evidence of disease. Erik had 13 years cancer free but sadly he relapsed at the age of 20. Erik's story is unique because it is rare to relapse after being cancer free for so long, it's a harsh reminder to all us parents that the fight is never over - we need a CURE. Erik wrote this great entry below, and I loved it so much that I wanted to share it with all Dylan's blog readers. You can follow Erik's journal HERE

Friday, December 22, 2006 5:36 AM CST

Last night in the hospital. Transfusions are all over. Two down, eight to go. Now I just have to wait to feel better. Before that happens, it's just one more sleepless night in the hospital... what is this doing to my brain?

I've been called a lot of things since I started treatment. "Hero" "Awesome" "an Inspiration" "Impressive". Everyone knows I have a huge pain tolerance. I just don't like to complain. I'm not going to lie though--it's hard being sick all the time. All I want to do is go back to work, go to school, have a normal life. That seems so distant now. So why didn't I get a normal life? Why did I have to be a "hero"? Always wonder just what it is that I'm doing that makes me a hero anyway. Just because I'm bearing all the pain? Or is it because I keep surviving? I don't think anyone enters the battlefield assuming they are going to be the one still standing at the end of the day. And what about all my fallen comrades? Does anyone know how guilty it can make you feel?

Cancer doesn't just mess with your health--it changes your whole mindset. Suddenly all the goals and ambitions of everyone living out the "American Dream" seem so pointless because this close to the edge, you know exactly how much good it's going to do you once you are gone. You can't help but want them, like everyone else does--that's what society trains you to think. But what I really want is something that will not go away no matter what. I can't describe how much it helps me to know that so many people care about me and pray for me. It's something I think about all the time. Human relations are so much more valuable than anything material.

Cancer can do two things to you: make you stronger or make you insane. I believe I've tasted both. But if God did this for a purpose, it's going to be pointless if I don't figure out a way to make the experience useful. I can tell you it has already made me a more compassionate person. It means so much to be able to help someone out--to give back for everything that's been given to me. Even the little things that mean so much... like having a good friend to talk to late at night when you really needed it. It’s not that hard to completely brighten someone’s day.

Thanks for reading this, and pray that I get more chances to help others, because that’s what I really want.

~Erik

Another Australian family at RMDH

2009-02-24T11:40:00.002-05:00

Dylan is still home from school as his flu swabs are still showing a positive result. Late last week, his liver tests were not good and gave us some concern, his AST 160 and ALT 265 both should be below 37. But yesterdays results showed a decrease at roughly 60 for both, so it appears it may be due to the flu. Dylan seems well in himself though, no cough. The only symptoms is a slight runny nose, loss of appetite and fatigue. The study/clinical trial has been postponed until Dylan is 100% hopefully he can start next week. I found out that Tim's sister's rental home was only 7km away from the bush fires in Victoria and their block of land was affected by the fires, leaving no vegetation on the property, thankfully though, they had not started building their house. There have been several fund raisers in New York to assist those effected by the disaster. The weather here in New York is bitter cold, although no more snow yet. I am done with the winter and ready for some nice spring days. I noticed today that the bulbs were peeking out of the ground in some apartment gardens, so hopefully Spring will come early.

There is a new Australian family staying at the Ronald McDonald House now. Isaiah Muller arrived about a week ago for treatment at MSKCC for Retinoblastoma, a cancer of the eyes. Isaiah has already lost one eye and has traveled in the hope of saving his sight and his life from this beast. The family had traveled to England for consultation on Australian doctors recommendations, but ended up here in New York for treatment that is proving much more successful. Isaiah arrived her with his mum, leaving 5 siblings and dad at home in Adelaide SA. Their website is just getting started so please check back on them once they get the opportunity to update it with photos and journals. The family, like us is relying on fund raising to pay for their medical bills and expenses. They too were denied funding from the Australian government, and have no options for treatment in Australia. Sadly they know of another child with a different life threatening condition who also needs to come to America for care, but they are financial restricted. These families motivate me more to one day having a foundation to help these Aussie kids...us parents will band together ourselves and get things done, hopefully the Australian government will eventually follow suit and change their current unaccessible treatment abroad scheme, to at least making funds available to children in medical need. But for right now I can only focus on getting Dylan's needs attended to and once this is behind us we can focus on paying it forward.

Getting over the flu

2009-02-15T18:54:00.003-05:00

Dylan is almost fully recovered from the flu, except for a nightly cough. The lab results from last weekend at the hospital came back very quickly with an influenza positive result. Tim also came down with it, but luckily Cain and I were spared. I met with Dr Becker from the Neuro team who is running the Perifosine study on Monday. He explained that the drug works well on Adults with brain tumors and other cancers, so a study has been opened for pediatric cancers. Dylan will be the 3 or 4 child to start on the study, but he will be the very first Neuroblastoma patient. In the lab it does kill Neuroblastoma cells. The doctor also explained that this drug also works even better with another drug (cannot remember it's name), but they must do the first study only using the Perifosine and once that is done they can introduce this other drug in a future study. Dylan will only require 3 tablets a week and a weekly blood drawing and check up and can remain on the treatment for as long as we want, depending on side effects and response of course. As Dylan was sick this week, his work up has been postponed to next week, after all these tests he will then start the Perifosine study on the week of the 23rd.

Weekend visits to the hospital

2009-02-08T19:06:00.000-05:00

Dylan started coughing late Friday night, he told me his friend at school had been coughing all over him during the week (now he tells me!) It' a fine line with balancing everyday life with a compromised immune system, but I do not want Dylan to be a boy in a bubble, so these are the risks we have to take in order to maintain life quality. By midnight he had a very high fever so I gave him Tylenol (Panadol) because I knew his counts were fine and he has no lines (medi-port) so blood infection was not the usual concern. Then out of nowhere, Dylan got a blood nose, it was pouring out, I could not believe the amount of blood! Tim pinched the top of his nose while he held his head over the bathroom sink and I held a cold compress on the back of his neck, but it would not stop, after 20 minutes we got him to urgent care and of course it had stopped by then. They gave Dylan a 24 hour IV antibiotic, checked his counts and sent us home at 7am. Dylan's platelets were over 100 and his neutrophils were 2.3 Once he got home, his nose started gushing again, and we repeated the same scene we had done earlier, only this time we bundled him up and took him outside in the cold, and his nose stopped bleeding almost immediately. Fevers continued throughout the day on Saturday, and we dosed him with Tylenol round the clock. This morning at 6am Dylan's temperature was over 40, I called the hospital who said since his counts were ok, just persist with Tylenol. I gave him a luke warm bath which got it down to 39. The hospital then called to check on him an hour later and they advised we come in for more IV antibiotics. An x-ray was taken to out rule pneumonia, as the doctor could hear some crackling in his chest. We are waiting to see if they decide to admit him.

Devestating news for our home state Victoria

2009-02-08T16:01:00.007-05:00

Please pray for everyone effected by the fires in my home state of Victoria Australia. Temperatures soared to 47 degrees (116 Fahrenheit) and bush fires killed over 100 people. My mother told me it came so fast that no one had time to escape, she also heard a story of people hiding in wombat holes to survive and many country towns are gone, my mother's words were that it's like a war zone. People were found dead in their cars as they tried to escaped. Us Australian's are not shocked by bush fires, we get them every summer, but this years is the worst. You can read more and watch the video HERE

Phase 1 Study

2009-02-06T20:02:00.002-05:00

We met with Dr Modak today and confirmed our decision to start the phase 1 study of single agent Perifosine for recurrent pediatric solid tumors IRB #: 08-091 A (1) On Monday we will meet with Dr Becker who is heading the study and further in the week Dylan will under go a series of tests to commence the study. It will involve daily oral doses of Perifosine. Dylan will have regular blood tests and check ups throughout the study on a regular basis, the first day of dosing will require Dylan to spend the whole day in the hospital to draw drug levels in his blood and to make sure he does not have any immediate side effects. The drug has little side effects, but with all new drugs of any description on any new patient, negative reactions are always a possibility. Dr Modak seemed very excited and confident about having Dylan try this study, and Dr Modak's recommendations on Dylan's treatment always sways my decision in his favor, as I trust him 100%. Dylan's HAMA result shows it is coming down finally, he is approx at the 2,000 mark. We will continue to test HAMA and when he is able to re-commence 3F8 we will do so. Dylan is very happy today, he had a spelling test today and he got 11 out of 12, he was very proud of himself as he had been studying very hard the night before. Dylan also had karate this afternoon and played with the therapy dogs in the evening, then retired back up to the room with some friends to play video games.

We have a plan

2009-02-04T16:53:00.004-05:00

After much thought and weighing out each option for treatment, and conversing with both our team at MSKCC and Dr Sholler in Vermont, we have decided to take the subtle approach and start Dylan on the clinical trial at MSKCC Perifosine This study involves oral medication and the side effects are very minimal (usually fatigue and possible diarrhea) The good thing is that this treatment should not effect Dylan's blood counts and therefore will have the least impact to his life quality as hospital visits will be minimal. This is the main basis on our decision, we wanted something that was new, something that would not effect Dylan's lifestyle too much and minimal hospital admissions. This treatment has not been used for a Neuroblastoma patient and Dylan will be the first. This is not a bad thing, Dylan was one of the first on the Cetuximab trial too, it is much less toxic than chemo based therapies and you never know your luck! The other treatments available all involve a chemo agent of some description and Dylan does not respond well to chemo anymore, even the lowest doses make him neutropenic and with only one bag of stem cells left, we really need to save them for later, so that more doors will be open for future progression. Vermont had several trials available and that Dylan would qualify for, Nirfutomox, TPI 287, Bortezomib with Fenretinide, Rapamycin with Vinblastine and also a vaccine coming out in the next few months. Dr Sholler and Dr Modak were both in agreement with avoiding drugs that would lower Dylan's blood counts and disrupt his life quality at this stage, however if Dylan's cancer starts to progress at any point we would need to revisit these options again. Dr Modak assured me that Dylan's case is very closely monitored and any sign of progression would be jumped on immediately. We are very glad that we went to Vermont, the foundations are laid in the event of progression and we are more knowledgeable to what is available to Dylan. As you know Neuroblastoma is a very aggressive cancer and every patient has a different response, Dylan is stable today and has been for years now, but it is almost certain that his cancer will progress at some point and has the potential to consume him very rapidly, this is why we have to always be one step ahead of this disease, always know our options and prepare for progression as early as tomorrow. Dylan in the meantime has been attending school, playing with his RMDH friends and continuing his dental work. The root canal proved very uncomfortable for him, and it has been postponed until the 13th. This Friday we visit with Dr Modak to prepare for the Perifosine study now that the decision has been made. Not much else is going on, the weather here makes it hard to venture outside unless you really have to, we had snow yesterday and the rest of the week in bitter cold. Dylan has spent more time on his Naruto webpage, I am sure he would love you to take a look by clicking HERE

Happy Australia Day!

2009-01-26T12:48:00.002-05:00

Well it's Australia Day in New York today, that means it's our arrival anniversary and marks 4 years in NYC. It also marks exactly 4 1/2 years since Dylan's diagnosis, and 4 years since Dylan was given 2-12 months to live. What a milestone!!! Thank you to everyone who sent emails and called, it just goes to show how much Dylan has touched the lives of others when you get messages on our arrival anniversary before I have even written about it in the journal! We are not doing anything today, even though celebrations will be happening at all Australian venues in NYC. Dylan is at school today as is Cain. Dylan had 2 more teeth removed last week, but his root canal was cut short due to pain. Dylan will see the dentist for 2 more tooth extractions tomorrow and another attempt at the root canal most likely Friday. We have narrowed down treatment plans and once we meet with Dr Modak, we should have a final plan and prepare for starting a new study/trial. Cain did pretty well on his school report, he blitz through math and french but Science and Social Studies are proving an issue for him, but mainly in the homework area. We were able to visit the Maynard family over the weekend and Lynn looks amazing after her stroke. Lynn is working very hard at rehab and it is paying off. Her speech has improved and she is walking around the house unaided. The movement and pain in her arm continues to be an issue, but hopefully over time this will also improve.

Back safe and sound from Vermont

2009-01-18T14:58:00.007-05:00

Tim and Dylan made it back to New York safe and sound on Friday. They had a great time in Vermont, although it was so cold they were unable to do much site seeing. From what Tim told me, the cold was unimaginable. The Ronald McDonald House there was beautiful and everyone was super helpful and nice to them. At the Vermont hospital, Tim said it was fantastic, the staff were great and Dr Sholler is extremely knowledgeable. Tim has returned with a wealth of information that we need to sit down and discuss and come to a decision on therapy. Dr Sholler took bone marrow samples from Dylan (which were positive for NB) that will be sent to Michigan for testing, this will create a cell line and be tested against different drugs rto see what "Dylan's" Neuroblastoma is responsive to. There are several options in our courst now, between MSKCC and Vermont hospital. Dr Sholler is in converse with Dr Modak to work out a plan just for Dylan that can be done in New York with minimal visits to Vermont if we decide to do one of Dr Sholler's studies. The Nirfurtomox trial is one option but may have too many side effects for Dylan at this point in time, but Dr Sholler also has other trials available and one very exciting one that will be released in Feb/March. During there stay in Vermont, they met up with Jack Brown from England and also Sean Hansen's aunt. All in all it was a very good experience and positive in terms of treatment options for Dylan, I will post more details once I have gone through all the information properly and can explain each option better. Vermont photos can be viewed HERE. Nana left for Australia Yesterday and her plane should land in Australia within the hour. It was a sad departure but we are so thankful that we had the opportunity to spend time together.

Yep it's cold

2009-01-13T11:09:00.007-05:00

Dylan and Tim made a snowman, Tim is getting very good at it now! Dylan affectionately named him frosty of course. We looked at the weather report for Vermont and it will be as cold at -23 Celsius on Thursday and Vermont has had 90 inches of snow in total this winter already! Wow, that is cold, so much so that it will make Manhattan feel like summer when they return LOL. HERE is the video. During Dylan and Tim's absence it will give Mum and I quality time together before her departure this Saturday, the time seems to ave gone so quickly. Jack and his family are also in Vermont so Dylan and Tim will at least have friends there when they arrive at the RMDH there. I forgot during the whole holiday season to show you that Dylan has made it to yellow belt in karate, he is so happy and proud of himself. Here is a video of the ceromony...click HERE

Vermont visit days away

2009-01-11T22:48:00.002-05:00

It snowed yesterday, and the forecast for the end of the week is freezing! Tim and Dylan are preparing for their trip to Vermont to see Dr Sholler on Wednesday through to Friday. Dylan will have a full work up including scans and biopsies, then Dr Sholler will discuss with us (me via speaker phone) all the pros and cons of her study, what she recommends and other up coming trials that may benefit Dylan. Then we must decide whether Dylan will have treatment in Vermont, start a new trial here in New York or go back on accutane to continue stabilization and wait until Dylan becomes HAMA negative. Nana has been enjoying her stay, she will return home on Saturday.

All our love to the Reid family

2009-01-08T14:13:00.002-05:00

Devin is now in heaven, my heart is once again crushed. Devin was a brave fighter. Initially he was diagnosed with rhabdomyosarcoma (Muscle cancer) in October 2005, when we very first met the Reid family. Devin defied the odds and became NED, he then relapsed in his brain, doctors feared the worse, but he again defied the odds. Then another hit, this time with Leukemia! After a failed bone marrow transplant from his sisters donated marrow, Devin join the other angels due to an infection at age 19. Devin was very well known for his amazing sense of humor, as you can tell by the photo a few entries below from the photo of his sisters wedding. We went on many RMDH outings with the Reid family and we knew them very well. Dylan called Devin "Mr Sueek" because he would make this squeeking sound from his hands when ever he saw ylan, to make him laugh. We love you Devin, we will never forget you, and we are so honored to have known you. The RMDH will be holding a memorial service this evening which we will attend.

Merry Christmas 2008

2008-12-27T18:26:00.002-05:00

We had a fantastic Christmas, thank you to everyone who helped us out, things were certainly tough financially this season. The morning was spent opening gifts and then at lunch time we went to Queens to spend the day with Jennie and Alyssa. We made Ginger bread houses, played guitar hero and Jennie's sister, Sophie, even dressed up as Santa and gave the kids a real surprise! Nana is having fun, we took her to see the Rockafella tree and on the way she even met Elmo! There has been no more snow, actually the weather has been really nice, but it's still cold. Cain was over the moon with his acoustic bass that he has been wanting for several months and Dylan was also very happy with the presents he got too. The RMDH was great with supplying us with gifts for the kids, they are so good to us. Lynn is doing better, although the whole Maynard family is fighting a virus right now, so we will visit them later in the week after they have recovered. Dylan is scheduled to go to Vermont on 14th - 16th for a consultation and work up, our decision on treatment will be based on what we learn in consultation with Dr Sholler and when we weigh up the pros and cons of the 3 options we have at this stage. Dylan's friend Joseph is doing better, we are extremley relieved by that news, we love him so much. We are having some visa extension issues, at this point more documentation is being asked for by homeland security, but I still feel sick in the knowledge that if it is not approved we may have an uphill fight on our hands, just to keep Dylan in New York to continue treatment options. Anyway, I am trying to keep that thought blocked and just focusing on the "right now" information they are asking for before they make a decsion, but at the same time I will be seeking advice from immigration lawyers.

Nana in NY safe and sound

2008-12-19T12:30:00.004-05:00

Well Nana got here last night safe and sound, tired and hungry...it's such a long flight. This morning it started snowing and nana saw snow for the first time in over 50 years! As you can tell by the photo she is very happy to be here, the boys are also very happy and for me, being with my mum again is long over due, I missed her so much. Unfortunately I have a cold, but hopefully I will get better soon and be able to take her to see the Rockafella tree and how pretty the city is at Christmas time. I will be sure to post more photos as we take them. Dylan has his Karate belting ceromony tonight and is very excited. A huge thank you again to the Kelly family and everyone who made this Christmas such a special one for us this year.

Dylan never does things by halves!

2008-12-15T13:32:00.002-05:00

More Drama! Dylan sure does do a good job when it comes to injuring himself, I think we are going to have to get him a permanent helmet! Last night in the playroom, he was dancing at a birthday party and fell over, hitting his head on the book shelf. He has a deep gash in the back of his head, but surprisingly he cried very little. Off to the Emergency room and they had to put in two metal staples to close the wound. Apart from this incident Dylan is doing fine. We spoke with the team at MSKCC and we have some decisions to make. We can put Dylan back on Accutane, the modest approach, just to continue to keep him stable until his HAMA goes away or the humanized antibody is available, or we can do the Nirfurtomox study in Vermont that may have some unpleasant side effects and involve more chemo, or we can take a chance on a new clinical trial at MSKCC that has minimal side effects, is taken orally, but has never been used on a Neuroblastoma patient before. It is called Perifosine targeting the IGF R1 receptors. This is an inhibitor that has proven successful with Neuroblastoma in animals, however it's effectiveness in humans with Neuroblastoma is unknown. The only side effects will be fatigue and diarrhea, 2 things that seem to always be an issue with Dylan anyway. We have decided that we will have a consultation in Vermont when we can reschedule a date in January and then make a decsion from there, once we have all our facts researched.

Dylan has a giving tree on the Lunch for life site again this year, you can access it HERE and here is the code when donating an ornament 31969, thank you for that Lisa.

I also want to mention igive for Band of Parents, please click HERE to see how you can help the cause just by shopping for things at stores like Bestbuy and Staples, there is no cost to you, just a few minutes of your time to register.

Medi Port is out

2008-12-11T11:38:00.003-05:00

Dylan is doing just fine. His ANC jumped from 0 to 0.4 on Friday and they let us out!!! His port removal and bone marrows were canceled due to a busy operating schedule, so Dylan had it done yesterday. All went well, he is very sore where the port was removed but I think the days off school make up for the discomfort in his mind LOL. A new medi port will not be put in unless Dylan requires intense treatment again (if he starts to progress) Today I meet with the team to discuss the "what next" in treatment options. Dylan was taken off the Thalidamide and Celebrex treatment due to his second neutropenia in the 8 months of therapy. We still have not re-scheduled Vermont, but hopefully after the holiday season we can resume with that plan. Not long to Christmas now, it's almost scary at how fast it comes around these days. I am back into the Vet nursing field that I use to love, I am volunteering at the ASPCA and after completeing all the orientations, I am now scheduled to work in the Veterinary clinic on a regular basis! Of course this is all around Dylan's schedule with clinic and treatments but for the most part it will give me something to do when he is in school, a semi normal life is always a good thing. Please keep Alyssa in your prayers, yes she is going in for yet another brain surgery today. Now for the big news, thanks to the Kelly family, the boy's nana (grandmother) has a ticket to come and spend Christmas with us in New York. It will be our first Christmas together in 3 years! We are so excited and so very grateful to everyone who helped the Kelly family in making this happen. Nana will arrive late next week. We were keeping it as a surprise for the boys but Dylan over heard my phone conversation, and well, lets just say the cat was let out of the bag and he figured it out. Cain and the whole RMDH band was very happy with their trip to the recording studio last night. They recorded their two songs professionally and will have a CD soon!

Bad Habit's debut

2008-12-04T15:57:00.001-05:00

Dylan is doing ok, he is still in the hospital and probably will be throughout the upcoming weekend. His neutrophils (ANC) were 0.1 on admission and this morning they have dropped even lower to 0.0. so no getting discharged anytime soon :( His medi port is still not working and he continues to have a cough. This morning he was sent down for a chest x-ray so we missed the morning rounds with the doctors. I am assuming that they will remove his medi port tomorrow, and do the bone marrow aspiration then also. He is well in spirits, just a little bored and upset about having the IV in his hand. Dr Modak said that the Thalidamide is the reason for the neutropenia and he has ceased it for the time being. I still do not have a new date for Vermont, but I have notified them of the situation and hopefully it can be rescheduled soon.

Happy Birthday to my wonderful and sweet husband today. Unfortunately we cannot be together as one of us needs to be in the hospital with Dylan.

Cain had his band debut last night at RMDH. The New York Pops have been working with the house kids for a few months now and they finally had their moment of fame. Cain was so excited. First they performed in the playroom as a warm up and for Cain's school friends and later in the evening they performed during the Christmas house party for all the families. I have put them on youtube, see below and added some photos to the gallery. In a few weeks they are going to a recording studio and in February they will perform at Carnegie Hall. The band is called "Bad Habit". Cain loves his bass so much, her name is Justine, after it's previous owner "Justin" who passed away from Neuroblastoma at the age of 17. Well done to Cain and Justine and all the band members who did so well. "I'm a Rockstar" was written by Cain and Charlie. Thank you to the New York Pops who continue to work with the kids.

see Dylan Youtube channel to view "Bad Habit" playing, click HERE

Dylan in hospital

2008-12-01T11:57:00.004-05:00

On Sunday night, Dylan developed a fever and we took him to Urgent Care at MSKCC. His ANC had dropped to 0.1 and his fever went up to 39. Dylan was of course admitted, and he is on 3 IV antibiotics and GCSF. I saw Dr Modak this morning who told me that the Thalidamide must be making him neutropenic and they will half his dose for the future. If his counts do not rise by mid week then a bone marrow biopsy will be necessary. The other issue is his medi port. As you may remember on last admission we had issues with it, as he has grown and it has shifted. Last night after attempts by 3 different nurses, he ended up with a peripheral IV line in his arm. All this of course puts a spanner in the works for the scheduled Vermont consultation on Wednesday, this will have to be postponed for now.

Nifurtimox and Vermont

2008-11-25T15:46:00.002-05:00

Tim will be taking Dylan to Vermont for a consultation with Dr Sholler on Wednesday 3rd December. They will stay for 2 nights at the RMDH in Vermont and Dylan will undergo a series of tests and scans. Nifurtimox is just one of the trials offered at Vermont and to my knowledge there are a few coming up in the near future that will will also discuss. Nirfurtimox studies for Neuroblastoma started in Vermont in November 2006. We have been keeping a close eye on the results and now feel that 2 years later, we need to look into this further and make a decision whether to put Dylan on the trial while awaiting trials at MSKCC. Our objective has always been to get Dylan cancer free, our other objective is to maintain quality and quantity of life, something we are succedding at very well right now. Our decison on whether Dylan will start on any of the trials at Vermont will depend on maintaining his quality of life (minimal side effects) Vs possible effectiveness of the therapy used. It is a hard decision for us to make, Dylan is doing so great and feeling fantastic, living his life as closely to a normal 10 year old as possible, but at the same time we want to see Dylan free from cancer completely. We don't want to leave any stone unturned, so we are going to Vermont to at least pick up the stone and look at it, laying the foundations for therapy in the event of progression etc. Anyway, I have included this video below for those interested in the scientific side of things. Dr Sholler speaks about Nifurtimox in this presentation in 2007.

Dylan's interest in the computer this evening

2008-11-24T22:05:00.002-05:00

Tonight Dylan decided he wanted to do his Facebook (for the first time!) He started by reading all his messages and then he wrote a few messages to people on his friends list...then he realized how much work it was to send everyone a message...he stopped and said ok this is hard work...finally he gets what I have to do on his behalf!!! LOL. Dylan then asked if he could make a webpage the way he wants it. I said sure, lets make one and we can have it on your website! Dylan was very excited and spent a few hours with me designing his page. He specigically wanted a page counter on it so he could see how many people look at it. He then said "Can I see how many times Skye will look at it?" LOL, I explained that was too technical for me and let's just stick to the basics. Anyway, here is Dylan's Page, I am sure it will change from time to time until he thinks that's too much hard work too! Click HERE to view.

Please Pray for Dylan's best friend

2008-11-24T17:23:00.003-05:00

Please send your love & Prayers to Joseph and his family. Many people know that Joseph is one of Dylan's best friends here at the RMDH. Joseph had Neuroblastoma (Made it to NED) but now he has Leukemia and will have a bone marrow transplant in the first week of December. Please pray for a successful outcome and his complete healing.

Cain's birthday

2008-11-20T16:47:00.003-05:00

Cain had a great 14th Birthday, thanks again to everyone who sent gifts and made it a fantastic day for him. Dylan did something for Cain that was really sweet. I took Dylan to Gamestop to spend his gift certificate that someone had sent to him. Dylan looked all around the store picking up various games and putting them back, while I stayed in the long line waiting to be served in the hope he would have made a decision by the time I got to the counter. Well, Dylan came up and handed me a game, saying that this is the game that Cain really wants for his birthday and I want to use my gift certificate to get it for him!!! I was so touched that he wanted to do that and when Cain opened it on his birthday morning, he was too. Cain and Dylan hugged and it was so awesome to see. The boys do love eachother so much, but lately they don't show it as much, I guess because of the age gap now, Cain is a teen and into totally different things to Dylan now. We took Cain to the Tuckshop for his meat pie lunch and he spent the rest of his day with his friends. Dylan and I will be heading to Vermont in a few weeks to meet with Dr Sholler and have a consultation to discuss what options of treatment she can offer. No decisions on treatment will be made until after the New Year, we are just laying the foundations and leaving no stone unturned.

Dylan's golden birthday, 10 on the 10th!!!

2008-11-12T09:31:00.003-05:00

Dylan had a wonderful birthday on Monday. The morning started with him waking up early and "hunting" for his birthday presents as he requested. I have posted some photos in the gallery, I think I got most of the gifts, but some of the photos did not work out too great so their maybe a couple missing. By lunch time, Tim and I took Dylan on the bus to the Australian bakery downtown so that Dylan could enjoy an Aussie meat pie for lunch and also to pick up the party pies and sausage rolls. A huge thank you to the Tuckshop for his birthday discount! The afternoon entailed lots of playing with his gifts and then at 7pm we had his party in the dining room at RMDH. The great thing was that Tuesday was a school day off for Veteran's day, so there was no concern for a late night. 3 of Dylan's school friends came along and it was an awesome feeling to watch him interact with kids that were not of the cancer world for a change. Lots of people came along including his friend Ellie, her mom and brother, his latest "chicky babe" Kim, Missy, Sheila, Barbara, Skye and many of the house kids and families also joined in on the celebration. The RMDH bought him a cake and I even made an Australian Pavlova! Everyone seemed to love the "Aussie" meat pies and sausage rolls too. Again an enormous thank you to everyone who sent gifts and made the day such a success.
Yesterday was back into the medical routine, poor Dylan had 3 teeth removed, but was as brave as a lion. Next week another 2 will be removed and following that a possible root canal. The dentist said his oral hygiene was good but that the chemo had taken it's toll on his teeth. Today Dylan is off school as his mouth is still bothering him after the extractions. Today I am going to the ASPCA to do my volunteer animal work and then this evening the RMDH are celebrating their 30th anniversary with a party and house tours, so we will join in on that. Cain however has a much more important agenda for this evening, he is going with his Godfather (Greg) to see AC/DC at Madison Square Garden. Cain has been counting down this event for months now and this morning he went to school with so much excitement in anticipation for the concert. Most people know that Cain is absolutely obsessed with AC/DC, and this will be his first time seeing them live in concert. When Greg and Lynn bought him the ticket for his birthday, his response was "that is my birthday and Christmas gifts for the next 2 years!!!" We also found out that Cain will be playing with the NY Pops and the RMDH band at "Carnegie Hall" possibly in a few weeks! Cain is concentrating on writing his own music, he is very enthusiastic and motivated.
Birthday photos can be viewed HERE

Lynn is doing better, she is now in rehab and will remain there for at least 2 weeks. She still has paralysis on her right side, but the doctors are optimistic that she can make a full recovery but it will take many months. The hardest thing for Lynn will be dealing with the frustration of it all and having to take medication for the rest of her life. Lynn is a very busy person, always organizing things and very active in various school and neighborhood activities. Sitting around getting better is not in her nature at all, but at least her parents have arrived safely from Australia and will stay with her during her recuperation. Cain and I did get an opportunity to visit her briefly in ICU, we had a cry and some laughs, and we certainly felt better after seeing her. Thank you to everyone who has expressed concern and prayed for Lynn's recovery.

Pre birthday excitement

2008-11-09T22:57:00.002-05:00

Wow, hard to believe that Dylan is turning 10 tomorrow. I know I say this every year, but I truly did not think that, after he was diagnosed with cancer, that I would see my son turn 7 let alone 10!!! He is soooooooo excited, he has smile from ear to ear and it's now 11pm and he can't sleep out of excitement. He has asked me to hide his presents in the morning so he can have a "birthday hunt" when he wakes up! Dylan already had a gift today...his best friend from Greece, Stavros, just arrived to stay at the house for the week during his check up. Dylan and Stavros already spent a few hours playing army men tonight. We are having a few friends over tomorrow night and of course all our friends here at the house, for a birthday party in the dining room. I will be sure to take lots of photos. Thank you again to everyone who made this birthday so wonderful.

Bad news just keeps on rolling in

2008-11-07T00:13:00.005-05:00

Yes, more bad news, another Neuroblastoma angel. Kody was a special little guy, particularly to Tim. Tim had grown very attached to this wonderfully brave boy because everytime he saw Tim he would yell out in a little chipmunk voice "Hey Champ". Sometimes you just bond with some kids more than others and Kody was one that Tim really bonded with. It's times like this that we have a good cry. For myself it brings back memories of all the kids that have become angels in the time that I have been here, so many I have bonded with, and so many that will be carried in my heart forever. Sometimes I wonder if the families even realize what an impact their child has had on my life. There are just too many to even list, over 45 children now...when will we find a cure?

Please pray for Lynn

2008-11-05T14:57:00.001-05:00

This week has been a very hard week, and it's only half way through. This morning I found out that Cain's God mother, Lynn, had a stroke. Many who follow Dylan's blog would know that Lynn and Greg are our friends in Long Island, that we spend a lot of time with. I am devastated, Lynn has been like a mum to me since I arrived in New York all those years ago. Lynn is the kindest women I know, she is always helping everyone, I just can't believe this has happened to her. Lynn is still in ICU and will need a lot of therapy to recover from the paralysis she has suffered. Please keep her in your prayers that she will have a full recovery.

It's going to be a hard week

2008-11-03T17:00:00.001-05:00

I want to Express our sympathy to the Finger family for their loss and especially to Mariah, who not only lost her brother, Carte r, to Neuroblastoma last year but has now lost her father. We also lost another Neuroblastoma fighter, Brody, our sympathies to the family at this hard time. We also lost Faith yesterday to a brain tumor, we were good friends with Faith's family, again I never know what to say when this happens, it’s the hardest thing in the world for a family to have to live through the loss of a child.

Busy weekend

2008-11-03T12:27:00.006-05:00

I just had to share this photo with everyone. This is a photo that was taken of our friend Devin and his family. Devin recently came out of transplant and attended his sister’s wedding. His sister was the one who donated her marrow to him. Devin has an outstanding sense of humor, and of course the wedding was not going to get through without it. The photo tells the story, basically Devin has to wear a mask for a certain period of time to protect him after transplant, I guess they decided to get his smile in the pictures and if everyone else wore a mask then he wouldn’t have to! Great photo guys, made us all have a great chuckle.

Halloween night was great, the boys went trick or treating at a near by apartment building, thanks to Brendan at the NYPD for driving all the kids from the house. Jess Thompson from New Zealand came to visit us. Jess has been following Dylan’s story for years now, and has done many fund raising events for Dylan. Jess came to NY to run the Marathon on Sunday, she did a great job, completing the marathon in 5 hours and as nervous as she was, she felt it was much easier than she thought it would be…well done Jess! Rich from the RMDH also ran along with Dr Kushner from the Neuroblastoma team, Harrison's mom, Gina, Marissa’s father, Randy and Griffin’s father, Lou. Photos can be seen HERE

I also forgot to mention about the NY Giants night last Monday. The RMDH had a fundraiser and invited some families to attend. Dylan got a photo opportunity with Eli Manning! The Giants were signing footballs for the people who donated for the event, and Dylan as bold as he is, decided to crawl under the tables and pop up beside him for a photo! Hannah’s family did a speech, talking about what a difference the RMDH has made for their family. It was a great night and lots of money was raised for the house. The RMDH had a fun run in Central Park on Saturday, both Cain and Dylan ran. Dylan came last but he did the whole half mile and was very proud of himself. Cain ran a mile and also did really well. I have added quite a few new kids the “House Heroes” page, please visit these amazing and brave children.

Halloween is in the air

2008-10-30T11:16:00.003-04:00

Dylan is doing ok, he had clinic on Friday and his HAMA result came back still positive, which means we still have to wait before he can have 3F8 again. All his other counts are good though. Dr Modak said he was going to ask the radiologist to read his MIBG scan again to determine the spots in the skull, but that he believed it was not progression. I have also been in contact with Dr Sholler in Vermont and we will go and have a consultation with her early December.

Halloween is well and truly in the air, I want to thank “Party Fair” on Knickerbocker Ave in Brooklyn, who generously donated costumes to the children and parents at RMDH last week. Thursday night the RMDH took the teens to Blood Manor, which is a haunted theatrical house. Cain went along and all had a great time, and yes they did scream and get scared as the actors jumped out at them. Dylan wanted to go but after I showed him the website link, he changed his mind… which was a good thing as he was not old enough to be allowed on the trip anyway.

Saturday we all went to Long Island to catch up with the Maynard family. Tim and I joined them for the CancerCare fundraising event, which was a Halloween theme, so we dressed up in our costumes. On Sunday we went on the Maynard’s sail boat for the first time. The weather was beautiful, probably the last nice day left for the year. Cain and Dylan helped set up the sails and learnt that sailing was a lot different to going on a regular boat. You can see the photos of the weekend HERE.

Dylan saw the dentist this week, and he had another tooth pulled. It is one of the side effects of chemo, his teeth are in a terrible state, he needs to have his molars pulled next week as the nerve endings are dying and the adult teeth are not pushing the baby teeth out. The tooth that they pulled today was very strange to look at, all the enamel was gone except a small amount on the tip. Sadly this is very common with children who have chemo but in hind sight it is a minor issue that can be easily repaired these days, and as an adult know one will be able to tell the difference, so I am not concerning myself about it too much. Dylan also had a hearing test done today and we will pick up those results next week to give to his hearing teacher at school so she can meet his needs accordingly.

The boys are getting excited about their birthdays, Dylan has started the countdown with starting every morning with “now there’s …days til my birthday!” Thank you to everyone who bought the boy’s gifts on their wish lists, we could not have done it this year without your help.

Dylan continues Karate every Friday with Kids Kicking Cancer, and he has now made it to yellow belt. He will get his belt at the next ceremony and I will be sure to catch some photos. Cain continues his bass playing endeavors, with band practice every Wednesday night with the New York Pops at the RMDH. They really are sounding great now. Cain is very excited because he wrote a song with Charlie and came up with a bass line too. The NY Pops said that they want to continue to work on it as one of the band’s songs!

The New York City Marathon is this Sunday and again there are many people we know who will be running. One very special person is Jess Thompson from New Zealand. Jess has been following Dylan’s fight for many years now, she has been fund raising for us and also rode her bike in honor of Dylan last year. It will be great to finally meet her in person!

Long Beach Island NJ

2008-10-16T10:37:00.005-04:00

We had the most amazing weekend. Our friend Kevin, took us to his family’s beach house on Long Beach Island in New Jersey. Kevin sadly lost a brother to Neuroblastoma 30 years ago, the heartache of Neuroblastoma effects you forever, no matter the outcome, it bonds us all as family. Kevin picked us up Saturday morning and the weather was better than we could have hoped for at this time of the year. The house was incredible and we each had our own rooms!!! The beach was almost literally their back yard, the sand was clean and the water was beautiful. We headed out to see the Barnegat Lighthouse that was built in 1857. It looked huge standing at the bottom but Dylan insisted he wanted to join Cain and Tim with walking to the top! To my surprise he did it, without being carried or complaining half way through. In fact he was so proud of himself for doing it that he has told everyone how he climbed 434 steps, well it was 217 but he counted the way down too. In the afternoon we went by the shore to do some fishing and crabbing. We didn’t catch any fish but we did catch one blue crab. We set him free though. The next day Kevin took us on a fishing boat and boy did we catch fish! All five of us caught at least 10 fish each, but we had to throw most of them back as they were too small, we ended up with 4 keepers at the end of the day and we had them for dinner. It was mine and Dylan’s first time ever fishing and after I got over my fear of touching the bait, I had fun. I had never eaten fish that I had caught myself, it was sort of weird but good at the same time. We made some friends on the boat, Herb and Tim, you can see them in the photo album. Monday was Columbus day so the boys were off school so we did some early morning shore fishing but didn’t catch anything, although there were a few bites. The boys had a blast playing on the beach and jumping around in the water. Thank you so much to the O’Brien family for opening their home to us. You can view the photos HERE

Dylan has a clinic appointment next week, I will discuss with the team about clarifying the spots in the skull that were on the last report, although the doctors have said it is not progression and he is still considered stable.

Dylan's website

2008-10-15T12:33:00.006-04:00

Don't be alarmed if Dylan's website disappears for a day or two, I am in the process of switching webhosting companies, but it will be back at the same url (dylanhartung.net) I have also managed to get a hold of dylanhartung.com, thanks to Richard from SBWinVPS Hopefully in the near future, along with this new webhost, will come a new look for Dylan's website and more user friendly version. Things may look a little scambled from time to time as I work on the site.

I will update soon, and fill you in on our amazing fishing weekend in Long Beach Island NJ as soon as I get this whole website stuff organized.

Test results

2008-10-07T12:00:00.002-04:00

Dylan’s clinic visit yesterday revealed the results from his workup. The scans showed no change in his bone metastasis, so that’s a stable result. His Bone Marrow biopsies showed that his bone marrow is “clean” no evidence of Neuroblastoma! His Brain CT is also clear and the urine markers with VMA have dramatically reduced! The results show VMA is 12 (lowest since Dylan’s diagnosis) his HVA result is 22.

What is VMA?

Catecholamines are produced by a part of the adrenal gland, called the medulla (the central part of the gland, as opposed to the cortex, which is the outer area). The 2 main catecholamine hormones are called adrenaline (or epinephrine) and noradrenaline (or norepinephrine). They can be tested in the blood, but most often are measured in the urine, along with their metabolic end products, VMA (vanillylmandelic acid) and HVA (homovanillic acid). The majority (not all!) of neuroblastoma's produce the catecholamine metabolites, VMA and HVA. So, testing the urine is very often done to detect disease. It's also used as an indictor for response to treatment. For example, a child newly dx with neuroblastoma with higher than normal levels (remember, these metabolites are normally found in the urine, anyway) of VMA, would be expected to see the levels drop back towards normal values as s/he begins to respond to therapy. About 5-10 percent of neuroblastoma's do not produce elevated VMA and HVA.

Here is the MIBG result in medical terms:

Findings: Persistent foci of increased uptake are again visualized in the skull, thoracic and lumbarspine, sacrum, iliac bones, acetabula and proximal femora are again seen, without significant interval change. Focal uptake in the left supraclavicular region localizes to the left pedicle of T1 vertebra on the SPECT/CT images.

Impression: Since Jun 27, 2008

Persistent foci of uptake in multiple skeletal sites consistant with MIBG-avid disease.
No Significant interval change

Hope is what gets us through

2008-10-06T10:00:00.005-04:00

Dylan was discharged from hospital on Tuesday, surprisingly his counts jumped up to 0.6. His platelets are also building up despite the GCSF injections, which we were able to stop on Thursday. Surgery came in during our admission and after a long period of attempts, was finally able to access his medi-port with a super long adult needle. The surgery team said that it was still swollen from the incident and felt that once it was healed it should be accessible again. Dylan did not attend school for the rest of the week as we wanted his counts above 1 and he also had clinic visits to attend. Today he has clinic again but will resume school tomorrow.

Saturday the RMDH had their first block party and it was fantastic! They closed off 73rd Street and had street stalls, rides, activities, a band and many other fun things going on for the whole day. I was on therapy dog duty, I walked Teigh, Bell, Angel and Lillie for the day and helped out at the therapy dog stall. Cain and Dylan spent most of their time on the rides and watching the band play. It was a very successful event and I assume they will repeat it again next year.

Great news for our friend Jack Brown from the UK, his scans and tests came back clear, he is NED (No evidence of disease). I remember last year, Jack’s family was told his disease was rapidly progressing everywhere and they made the decision to return home, I kissed and hugged Jack thinking it was the last time I would ever see him again, and everyone else was thinking the same thing. But miracles happen, he is well, still here in New York for a work up at MSKCC and cancer free!!! Our other friend Kieran is also continues to be NED, it’s so great to know there IS hope, and it makes us even more determined to continue. Actually Jack has been treated in Vermont recently, the doctor there, Dr Sholler, has promising treatments and 2 other trail being released soon also. This then puts us in a position to research and make very hard decisions on whether this would be good for Dylan. Of course our faith and hearts are with MSKCC, but while we are waiting on trials to be released here, we could do trials in Vermont. But again we must research and converse with the doctor there to look at side effects Vs potential effectiveness on Dylan’s bone metastasis. I have discussed this option with Dr Modak in the past and he is very open to it and would remain Dylan’s primary doctor. The good thing about Vermont is that Dylan would only need to be there for the initial work up and commencement of the study and could do the remainder here in New York on oral medication.

I want to make a point of thanking my wonderful husband for being my rock and taking on so much of Dylan’s care in the past few months. Tim takes Dylan to all his hospital appointments now and organized getting him into school, giving me the opportunity to rest and get stronger emotionally to deal with the everyday challenges of the cancer world.

It’s that time of year again, the boys birthdays are in November (Dylan on the 10th, Cain on the 15th) I normally send out a private email to friends and family with the boys wishlists, but this year for the first time I have decided to post them on the journal. I hate asking for help and hate being so bold, but honestly we are struggling financially even more than in the past and I am very concerned that we cannot fulfill the boys requests, let alone Christmas presents. The wishlists the boys created themselves, I did however condense Dylan’s list a little but it is still very much over the top!!! (LOL). Cain doesn’t want for much, basically he loves AC/DC and Metallica and his music games. I don’t intend for the boys to get everything for their birthdays, this list is also for Christmas and of course Dylan does not need EVERYTHING on his list, but it gives our friends a good lot to choose from. Click HERE for Dylan’s and HERE for Cain’s.

Please visit our good friend Jake who has been bravely fighting Neuroblastoma since 2001 (yes 7 years!) Jake is very good friends with Cain and they hang out together when Jake comes to NYC for check ups and treatment. Well Jake had some bad news on his last visit and is heading back soon for high dose chemo once again, as everyone knows, high dose chemo is scary and unpleasant no matter how many times you have been down that road. Please send Jake your love and support keep him in your prayers, he is an amazing young man and so is his family. Click HERE to visit Jake.

Dylan admitted into hospital - Neutropenic

2008-09-28T10:34:00.004-04:00

Friday was a long day at clinic. Dylan had his MIBG scan and CT spec done in morning and then he needed to return to the PDH to see what we were going to do with his medi-port. First they sent him to x-ray to make sure it was still in the right spot, that came back as fine so next was to try and access it. Dylan was really nervous but being his usual brave self he persevered. The swelling had gone down but it was still bruised and tender. The nurse inserted a longer than usual needle into his port, and surprisingly it sat flush to his skin, so his port must be way back now, she also mentioned it felt like it had tilted. When they drew back, lots of air, old blood and the white anesthetic medicine came through, after a while it eventually had blood draw back. They flushed it with saline and then heparin locked it, there was resistance to the push, but they did get it through. Dylan has been neutropenic since Monday, Dr Modak said it is from the Cyclophosphamide given when he had the Retuximab several weeks ago. The Cyclophosphamide (Chemo) was very low dose, in fact Dylan had no hair loss at all, but it seems neutropenia was bound to set in. Dylan has been on GCSF injections since but so far there has been no movement in his neutrophils. Friday night Dylan developed a cough and runny nose and by Saturday morning a low grade fever that came and went. We monitored the fever and by afternoon we were left with no choice but to go to Urgent care for admission. I had left his line in his port as I had that “mother instinct” that he was not far off an admission. All attempts to draw blood from his line failed and we had to pull it. The nurse attempted with a new line, but when he flushed it, Dylan screamed in pain, so the nurse decided to remove it immediately in case it too was in the wrong spot. So poor Dylan ended up with a peripheral IV line in his arm. Dylan has been started on Vancomycin, Amakacin and Aztreonam antibiotics, blood cultures taken, nose swab taken and admitted on the pediatric floor as febrile neutropenic. Dylan is well in himself, eating well and full of attitude! The doctors said they are going to leave his medi-port alone until the surgery team come to assess the situation. Alyssa was very excited to know that Dylan was on the same floor as her, and she will come visit him when she does her routine walk around the ward. Alyssa is looking fantatsic, even after 7 incisions in her body during surgery over the past 2 weeks!

So far so good

2008-09-25T12:00:00.001-04:00

Dylan's brain CT has come back clear, great news, we should have the rest of the results from this week's work up by next week. Today he had his bone marrow biopsies which did not go so smoothly. Poor Dylan started to scream while in the procedure room. What had happened, was his medi-port needle blew and the fluid went into his chest. Dylan has grown and put on weight, so the regular needle must have slipped out. Dylan's chest is now swollen from the fluid that lies under the skin. This will go away on it's own, but it left Dylan miserable. He has an MIBG injection this afternoon, ready for scan tomorrow, but because his medi-port is not in working order, he must have a regular IV placed in his arm and he is not happy about it at all. He is however, very happy that due to his work up this week he has missed 4 days of school! Alyssa has surgery today, so I will also visit her at some point, please keep her in your prayers.

Dylan is in School

2008-09-21T15:00:00.001-04:00

I know it has been a big lapse in time since my last update, but not much has really been happening and I have been taking a computer break! Dylan is doing great. He started school (America’s school year starts in September) and is about to commence his 3rd week of 4th grade. Some of you may remember we attempted school last year but after a week, Dylan ended up back on home instruction. This year Dylan is making a huge attempt, although he still hates the early mornings and ends up in the nurses office a few times a week for various reasons. It’s great that Dylan is now in “real” school, he is now as close to being a “normal” 9 year old as possible. Next week Dylan will miss a few days for the 6 weekly work up of scans and tests. So far the cycle of Retuximab and Cyclophosphamide has resulted in lowering his Hama level from approx 2200 to 1700 but hopefully it will get even lower as his B cells gradually deplete. The team has decided that only one cycle will be given. Dylan continues on Thalidamide and Celebrex daily and is stable, he has put on more weight, actually you cannot even see his medi-port anymore! Cain is in 8th grade this year and is also doing fantastic. Cain continues to learn the bass guitar and the RMDH has even started up weekly music lessons of which both Cain and Dylan attend. They are working hard at song writing and next year will perform at Carnegie Hall as the RMDH band. Dylan has his best friend Joseph here this weekend, so he has been busy playing with him, and Cain does his usual “teen” hang out stuff. I have added a few more website links to the Children of the House page, so be sure and check them out.

Kahillia is a star

2008-08-25T11:39:00.002-04:00

Please pray for Kahillia's family, for peace and strength at this time.

Prayers for Kahillia

2008-08-20T07:53:00.001-04:00

Please pray for Kahlillia, she is in Australia fighting this awful cancer, we have been in touch a few times over the years and Kahlillia is in need of prayers and peace the most right now. Click HERE

Dylan is doing great, counts have dropped slightly though. Still on Thalidamide/Celebrex and awaiting a HAMA result. Next round of Retuximab and chemo starts after August.

I miss Ellie

2008-08-16T12:59:00.002-04:00

I miss Carter

2008-08-16T12:43:00.001-04:00

Retuximab and Chemo

2008-07-30T11:31:00.003-04:00

Dylan is doing great on the Retuximab and Yesterday had the chemotherapy component without any horrible throwing up and he tolerated it in his usual superman form. He had a great weekend at Camp Kiwi for Giant kids, swimming and playing outdoors, he really is looking remarkable. Thank you to all that continue to support Dylan's fight and thank you to all the new supporters after watching the 60 minutes story a few weeks back. We send all our love to Olivia in Australia and her family, HERE is her website address.

60 Minutes Australia confirmed to air

2008-07-16T13:11:00.001-04:00

Dylan tolerated the Retiximab very well with no side effects at all. The next dose is in 2 weeks. The 60 minutes story has been confirmed to air in Australia on July 20. You will be able to view it online HERE after that date, titled "Power of Love". I have also uploaded some photos of the kids in the pool you can view HERE. I am off to Chicago tomorrow for the Neuroblastoma conference, it will be great to get see doctors from around the world come together and discuss treatments and research. You can view more about the conference HERE

For some reason I can no longer post Youtube videos on this blog, so to watch Dylan swimming in Long Island click HERE

Rituximab scheduled

2008-07-11T15:00:00.001-04:00

Well it’s official, Dylan will start Rituximab on Monday, it’s an infusion of about 4 hours. This is an antibody that kills off the B cells, which are the cells that create HAMA. Dylan will then have a 2 week break, then another round of the Retuximab followed by low dose Cytoxin chemo (Cyclophosphamide) The down side to this Rituximab is that B cells also are for fighting infection, so Dylan will be immune compromised and vulnerable to infections. Knowing this, we are still going ahead as I feel the hope of removing HAMA an enabling the continued treatment of 3F8 to be more beneficial. Dylan will be the 6th child at MSKCC to have this for the use of removing HAMA. Dylan will continue his Celebrex and Thalidamide combination during the Rituximab/Cytoxin treatment. Dylan is very happy and very well and very positive. He is not upset by the up coming treatment at all and even said to me the other day that he wants to give “real” school another try this September because he wants to be more like a “normal” kid and not like a cancer kid. Dylan also continues his spirit of “beating” this cancer and being Cancer free one day. I am relieved that he still has this will to live and continue on, he amazes me each and every day. Dr Modak was very impressed by how well Dylan continues to be, Dylan’s weight is now 23.1kg and Height 127.6cm. All his blood counts were also fantastic and in normal range now. Karate is still high on Dylan’s priorities and enjoyed class in clinic today as his usual lesson at RMDH was cancelled today. I will take the camera to long Island this weekend and try and get some swimming photos online for you all to see.

Enjoying the summer

2008-07-10T15:00:00.001-04:00

Sorry for the delay in updating. Everything is fine, we have just been enjoying the summer, Cain is on school holidays and we have been spending as much time in Long Island as possible as the Maynards are in Australia and we have the whole house to ourselves as a family. Dylan and Cain have been having lots of fun in the pool, despite the fact that this has been a really wet summer, it seems to have rained so much this year. Dylan is actually jumping in the pool and swimming now, I can't believe how well he is doing. He is funny though, he only swims with one arm because he refuses to let go of his nose LOL.

Dylan had a work up 2 weeks ago, including MIBG scan, PET scan, MRI of the brain and CT scan, Bone marrow biopsies and urine tests, all results show he continues to be stable and remains unchanged. We go to clinic in the morning to discuss the next phase of treatment with Dr Modak, I have an idea that he will start Dylan on the antibody/chemo treatment to try and get rid of HAMA, as lots of kids are now starting that new protocol. Ah chemo, not looking forward to that but it is suppose to be low dose so hopefully Dylan will not loose too much hair and not get too sick, although I know he will get neutropenic and end up in hospital, he always does even on low dose stuff. We need to keep moving forward so I will agree to this if that is what he has planned.

60 Minutes Australia has contacted me, hopefully the story will air on July 20 if no other stories come up. Unfortunately Tyla Rose passed away about a month ago, I only just found out myself. 60 minutes decided not to run the story about her, so it will be edited to just show Dylan's story along with another child from Australia who also has Neuroblastoma. Not really sure of the angle of the story now but I am sure it will be a positive one. From what I am told the other child is in Canberra and has relapsed and given no option but pallitive care in Australia, and told she will not survive.

Goodbye Marissa

2008-06-16T17:14:00.001-04:00

All is well, Dylan is doing great, no longer in the hospital, turns out it was just a virus of some sort. Jennie had her surgery on her ankle, I have been staying with her to help her round the house, this Friday hopefully things will look good at the orthopedic appointment. We sadly lost Marissa on Friday 13^th…we send all our love to the family who we knew fairly well over the years at RMDH. This disease travels so god damn fast once it kicks off, it’s terrifying. Our friend Sean at RMDH also relapsed while on the same drug combination as Dylan. It spread so fast, surgery was needed and in 3 weeks from the last scan it had rapidly progressed at an alarming rate. Sean just hit the 4 1/2 year mark with his Neuroblastoma. I sit and hold my breath as Dylan approaches his 4^th year next month on the 26^th. Out of 5 kids I know that are on Thalidamide and Celebrex, 3 have relapsed. It is supposed to keep things stable, but this disease is so complex that it only works for some kids. So far so good with Dylan, but I know it’s only a matter of time, with each month of having this cancer increases his chances of it taking off like a rocket. Yes I know Dylan may be the first kid ever to live with stable disease for the next 30 years, but I also know the chances of that are slim. If they don’t find the silver bullet soon we are all going to run out of time. All I know is to take each day as it comes, every morning is a blessing and should be treated as such. I know that we have to wait until the new vaccine therapy or humanized antibody gets released, we have come so far that we must keep going forward.

Hospital

2008-06-04T12:00:00.001-04:00

Dylan is doing ok, he was admitted Monday night with Fever of 104.7 and put on I.V Vancomycin and Cephtrixone antibiotics. Blood cultures were also taken. It seems he has a sore throat so it’s likely to be a virus, but they must hit him with antibiotics just in case it’s a line infection. The doctors could not see anything wrong with his throat, it does not even look red, but Dylan is screaming in pain with it, to the point of them administering Dilodid for it. The fever comes and goes and controlled by Tylenol. When he is awake he is happy and himself though, so I am not overly concerned. He just wants me to lay beside him and cuddle him like crazy most of the time. They have put him on vitamin K as his PT results showed it was high…something to do with coagulation. This may be caused by the Thalidamide, but I am waiting to see the doctors to ask more about this. I assume he will be kept in the hospital until his fever has subsided for more than 24 hours and as long as the blood cultures continue to come back negative. As for Jennie, she is on the operating table as I type this, I will go and see her soon. Thank goodness the hospitals are opposite each other! The RMDH have two new vans (well buses) they are great, they are similar to the Access-a-ride buses. They even have a wheelchair lift at the back! They have called them the “Hope Mobile” and are painted white with the new RMDH logo on them, they look fantastic. Anyway, was just at the RMDH to have a shower while Tim is with Dylan, I must get back.

When it rains it pours!

2008-06-02T15:00:00.001-04:00

Well I have been caring for Jennie (Alyssa's mom) since last Thursday as she broke her ankle really badly and can't walk. She goes in for surgery tomorrow for pins, screws and plates to reconstruct her ankle. Now Dylan is in urgent care with a fever and chills, so likely admission! On my way back t Manhattan to be with Dylan while Jennie's niece is on her way to look after Jennie! Will update on Dylan as soon as I can.

Indianapolis

2008-05-28T15:00:00.002-04:00

We had an amazing Memorial Day weekend in Indianapolis. The Stegemann family arranged for a private charter jet to pick us up from an airport in New Jersey on Thursday night. I was nervous at how small the plane was at first, but once up in the air watching the incredible view of the sunset, I soon relaxed. We were picked up once we landed in Indiana a few hours later by Dave and his wife Annette. They cooked us a yummy roast and then on Friday we hung out together, catching up on old times and remembering Justin. There were photos and memorabilia everywhere throughout the house, I really felt like Justin was still there, and seeing how well the family is dealing with the loss after such a short period of time, I was happy and content, and somewhat relieved. We went to a place called “Steak n Shake” one of Justin’s favorite places for lunch, then we headed to the grocery store to stock up on steak and crab claws to put on the grill. I tell you, I don’t think I have eaten like this ever before, they fed us like kings! We were joined by friends Brian and his son Mike later that night, they drove up from Long Island New York. Mike’s twin brother, Matt passed away from cancer a few years back, they were very close friends with Justin. On Saturday the boys all went to the driver meeting with VIP passes and toured the Indy museum etc. Mean while Annette and I went to pick up Seth who was spending his last weekend with us before boot camp. Saturday night we had a fire works display in the yard (they are legal in Indiana) and then while the kids stayed at the house with the sitters, we took off to the track for the party! We were there for a few hours, watching the bikes and people all party it up. Then Sunday of course we went to the Indy 500 race, it was great! I even got a tan! Dylan and Cain loved it, first turn, front row. Dylan did have ear plugs but insisted on just sticking his fingers in his ears. The New Zealand driver won, while our “Aussie” driver ran into the fav female driver in the pitts, taking both cars out of the race! Monday we just rested and took the kids bowling in the evening. Tuesday morning we were greeted again by a private plane, the exact same one that Justin use to fly, so I immediately had no fears about flying, knowing he would be looking out for us. We had such a good time I didn’t want to leave, Indianapolis is so much like home, nicer food, slower paced. Even the land and houses were like home, trees, land, lakes and totally different stores than Manhattan. I can’t get over how much cheaper it is there too, almost quarter the price of food etc than in New York! More and more I am learning how Manhattan really is an entity all of it’s own, it is so different from the rest of the country. Photos of our mini vacation can be viewed HERE. Thank you to the Stegemann family for covering all our expenses and making us feel so welcome and to Mary Ann and Matt at First Wing for the flights.

RMDH Gala

2008-05-22T15:00:00.001-04:00

On Monday night we attended the Annual Ronald McDonald House Gala, of which some of you will remember Dylan spoke at a few years ago. This year along with many other children from the house, Dylan joined in the Karate demonstration on stage for the crowd. Dylan has been continuing in the “Kids Kicking Cancer” Team and is now on a high yellow belt! He also presented the Commanding Officer of the 19^th Precinct, our good friend Jimmy, with an award, one of Dylan’s art pieces along with a photo of Dylan to hang up at the Precinct. The house did a wonderful job framing it, as you can see by the photo I took. This award was to commend the amazing dedication that the NYPD have for the Ronald McDonald House. The night was great and again held at the Waldorf Astoria. The next night, we had a visit from the New York Giants! I now know why they are called giants, these guys were HUGE!!! Us parents were allocated players to take along on a tour of the house. Dylan, Cain and myself, took along players Alex and Dylan. You can view photos HERE

I would also like to let you all know that we are also selling Quilt covers with beautiful words of inspiration written on them, click HERE to view and order, they are only $10, great value!!!

Well, we are off to Indiana this evening, we should have a great time visiting our old friend Dave and his wife Annette. I know the boys are over the moon about seeing the race!

Old Friends

2008-05-15T15:00:00.002-04:00

We are all doing well, Cain is doing great at school, visits lots of friends after school hours and has a better social life than the rest of us! I am actually so surprised at how well adjusted and adapted he has become. I know that children are usually like that but Cain is a very sensitive soul who struggles with anxiety and never likes to be thrown out of his comfort zone. It makes me so happy that he has come to terms with our living arrangements for now, he makes me very proud. Dylan is doing well, his blood counts yesterday were great, with his platelets at 126. They did another HAMA test, and this time we should get a number result to see how far off we are on achieving a negative result. He has been very tired on the Thalidamide and you can see it in his eyes, we will start the second cycle this weekend, but if the fatigue continues then we will lower the dose on the third cycle. I had a great visit with Rhonda last week, I have missed her and it was fantastic to see how well she is doing. Rhonda is Carter’s mom, and we spent a lot of time together while he was having treatment in New York. Carter became and angel last year, and I was worried how his passing would effect Rhonda and his sister Mariah, but I was pleasantly surprised that life does go on, of course they carry pain and always will, but they seem happy and adjusted. Over Memorial Day weekend we have been invited to visit our good friend Dave and his wife Annette, he lost his son Justin at the age of 17 to Neuroblastoma. Dave has tickets for us to see the Indy 500 car race and has also arranged flights for us! The boys are bursting at the seams with excitement. I can’t wait to see them, we were very good friends while they were in New York. The friendships that we have made over our journey will last forever, they are very special. Even though I meet people who I assume understand what we are going through, I eventually realize by their actions that until they have walked the shoes, they never truly know. The bond that we have amongst other cancer families is unique and eternal, even after a child passes.