First hospital admission since arrival home to Australia

We had a bit of a scare Thursday night. Dylan had chest pain so I took him to the emergency room. They thought he may have had a blood clot but then we noticed he was yellow. Then of course the fear that the cancer had progressed into his liver became a very real concern. He was admitted and the next day a liver ultrasound was done, and thankfully it turns out that he has a stone in his bile duct. Hospitalized and on antibiotics with surgery to remove the stone scheduled Tuesday. They said it may have been caused by past chemo or calcium leaking from the bones where the cancer is. Today is Monday and we are preparing for another liver ultrasound. I will update more when I get home to real Internet access and my computer. 

FB takes over blog! Noooooo....

I have found that Facebook seems to be the fastest point for updates lately and I feel bad that I should also put something up here too, so don't stress if you don't have a FB cause I will eventually get around to updates here when I can. As you know we arrived back in Australia 5 months ago. Settling in has been a bit harder than anticipated, I see now it will be a year or two in reality, to be budgeting better and catching up on things. So far I tried Peter Mac Hospital for an Oncologist there, but they referred me to Monash as they do not do pediatric bone marrow biopsies and they feel Dylan would be better having everything done in the one place ie: The Royal Children’s or Monash, which are both linked with the same team of oncologists. As everyone knows, I have great hesitation of running into 3 previous oncologists who were involved in Dylan’s case for the first 6 months. I was assured that I could meet with Dr Moore instead and not deal with those particular doctors. After dealing with my personal feelings about even dealing with the team members from the Children’s, I went in with the professional not personal attitude. I was greeted with open arms by Dr Moore who was a fellow at the time of Dylan’s diagnosis and remembered us. She is a young oncologist but has a very sincere nature which was very comforting. She explained that she remembered thinking how hard it must have been for us being in the position we were in and that mothers know best. I was very relieved to find that Dr Moore was not like the other doctors I had dealt with in the past. Monash is also only 5-10 minutes away from us. They have built a cancer wing for pediatrics and it was very nice in comparison to our earlier experiences of cancer care in Australia. Dr Moore said she will contact Dr Modak for Dylan’s records and his recommendations. She told me she would be foolish not to utilize the advice from Dr Modak. I then got an email from one of the nurses who delivered a lot of Dylan’s chemo at RCH when he was first diagnosed, saying she is now working at Monash and will be making Dylan’s work up schedule and she can’t wait to see us! I am so relieved. A full baseline work up will be done in the next 4-8 weeks allowing time for Dylan to settle into school, as the work up will mean 4-5 days off school. 

We have started on Dylan’s dental care here too. We see a community dentist who has already done a cleaning and filling and will work with him over the next 12 months on filling the rest of the fillings in almost every tooth. He is on high fluoride toothpaste and tooth moose to try and repair the damage caused by the chemo. X-rays revealed the usual short roots on the teeth that chemo is known for, but also he has an impacted tooth. As his dentist works on his fillings we will wait for an orthodontist referral at the dental hospital in the city to see if it needs to be surgically removed or if it can be left alone. This referral can take a few months to get, which is fine since he is in no discomfort by it. 

School, the next big hurdle had me stressed out to the max. We decided on a high school quickly, given the area and that we knew kids going to the school. After visiting the school and seeing their wonderful music program, the deal was sealed. I knew it was the right one just by the native trees and plants that enclose around the school, the smell was so fresh and so Aussie :) Cain has 12 credits from New York towards his VCE so he was able to go straight into year 12 as he only needs 16 credits to graduate (in other words he only needs to make 4 credits this year) He of course choose music in his curriculum, along with psychology, business management, math and mandatory English. Cain continues to aspire to going to VCA (Victorian College of the Arts) after he completes year 12 at the end of 2013. Cain settled in fast, a week last year at school as a year 12 orientation and he had his phone blowing up with texts and calls, and all of a sudden it went from Cain being home all the time to, see ya mum! He already has a girlfriend and I think he is pretty content with life right now. It’s actually so awesome having an 18 year old…he’s a legal adult here in Australia. I thought I would freak out when he grew up, but I love it now. 

Dylan has been down in the dumps, it’s hard for him to understand the concept of time being a huge factor into our lives changing here. He thought when he left New York he would instantly have this “new life” I think. He struggles with boredom, but that was the same in New York too. He had an orientation day at school, year 7, and he came home in tears, it broke my heart. He said they encouraged him do sport and he couldn’t, but they kept saying to give it a go, then he felt embarrassed not to, so he did and then he was in lots of pain. Between then and the 6 weeks until school officially started I was a mess with the worry of how Dylan was going to go at school. Well, he started last week and I am in total shock. He has done brilliant! Up early, showered, teeth brushed and lunch made! Under my advise, sport has been removed from his curriculum and replaced with an extra home economics class or Japanese class. As you know cooking and the Asian culture is Dylan’s keen interests so he is very happy with this arrangement. He goes to school with Jenni’s nephew Max, and they are good friends which has made the transition even better. Yesterday he told Cain to keep doing whatever it is he is doing cause he is making him popular LOL. Cain said what do you mean and Dylan said well everyone keeps asking if Cain with the tattoos and plays bass your brother? And when he replies yes they smile and say, cool LOL. Dylan came home last night with some English homework, brainstorm as part one and write your biography as part two. Dylan huffed and puffed and gestured the sheet of paper to me, saying that he can’t do it because it doesn’t apply to him and the teachers don’t understand, that they got frustrated with him. I looked at the paper. Seemed simple enough, and Dylan has a great autobiography to write about! I tried to explain that although some questions don’t apply to him he can improvise. I could see why he frustrated the teachers, he was frustrating me! Then I realized that I could tell he really did want to do the homework but he didn’t know how. But it was so simple, how could he not know how? So I looked at the questions again, read them twice over, then it hit me! These were some of the questions:

·        Have you spent time with your grandparents? What are your best memories of going to grandma’s house?

·        Have you had a very best friend? What adventures have you shared?

·        Did yours aunts, uncles or cousins make time to have fun with you?

·        What was the best family vacation you went on?

·        What is unique about your family? Does your family have holiday traditions?

Poor kid. He was looking at the questions differently to everyone else, he was looking at them as a “normal childhood” and he didn’t have that. So he just made up his mind that he couldn’t do the homework. Best friend died in 2009 at age 13, can’t remember much of my cousins or grandparents, etc, etc. So I then had to explain it to him differently. Dylan you have the most interesting story to tell! We may have never been on an official family vacation but we have been to America and traveled a bit around there at various times. You may not have seen your cousins but you have 22 of them and you are re-connecting now. Don’t you remember when Nana visited us in New York, and how she had a photo taken with Elmo. And we are a very unique family, not because you have cancer but because of what we did, we raised money and went on the news and in the paper, you met several celebrities and even went to the movies with Nicole Kidman! I explained his biography is here, right here on this blog, over 500 postings…writing an autobiography is easy. After an hour in his room he proudly came out and said he was done. The only other things he has said about school is that he feels he is too old for the kids (he is 14) and the kids he is with are 12. In the same breath he confessed he felt embarrassed because he found it hard to write as fast and keep up with the work. I explained how hard it would have been in year 9 and unfortunately year 7 is best for his academic needs right now. I also reminded him that education is not mine or dads priority for him right now, that his happiness and social needs are the priority. I don’t care if you come home with all F’s as long as you have a smile on your face Dylan. His teacher called and we had a chat, she said she will try and add him to a year 8 or 9 class during sport to do Japanese or Cooking. I told her not to push him too much, to remember he is hard of hearing and this is a huge change for him. I think it’s going to be ok.

Next on the list is trying to get on top of all the bills! School has cost so much money, school fees, uniforms, books, more books and now photo and formal and camp money! Geeez! Then there is a huge electricity bill and my car breaks down all the time. It’s a normal life basically I guess. The usual stuff, it’s nice to be this normal. 8.5 years Dylan has had cancer for. July 26^th will make it 9 years…who would have thought after he was given 2-12 months to live in 2005. If you visit my Facebook you can see photos of Dylan and life back home in Australia, click HERE

Home

We are back on Aussie soil, living with my best friend Jenni since we arrived, until the house next door that her parents own, is vacated by the current tenants. We will rent the house from her parents who were our landlords many years ago when we lived in Caulfield. It’s been a very strange feeling since we arrived. We are super happy, like we finally crossed the finish line after the marathon of a lifetime. At the same time we have so many things we have to get done, like the paperwork for official things needing address changes, getting mobile phones, Medicare cards, Center link, Vic roads, and picking up our personal belongings from the Customs Center. We also have so many people we want to visit, but I am not confident enough to drive too far yet, at least until I get a GPS cause I forgotten where to go and lots of the roads have changed. It feels so strange to know all the roads but not remember where they connect to. I was lost one evening just driving locally and felt so awful because I could not remember, that brought on my first melt down since arrival. 

We had a BBQ with Tim’s family at his parent’s house last week and we saw our first flock of wild cockatoos fly by since we arrived. We love listening to the gargle of the Magpies and smell of the freshly mowed lawn. It is also so weird to hear ourselves speak as we refer to things in the American way and catch ourselves then switch back. The hardest things to get back into saying are mobile phone instead of cell phone, Ta instead of thank you, Chemist instead of drug store, shops instead of store, milkbar instead of deli, bottle shop instead of liquor store and rubbish instead of trash...the list goes on and on. I love being reminded of the Aussie slang like “you beauty, where’s the dunny, you little ripper, fair dinkem, no worries, grouse and she’ll be right mate”. 

Cain is settling in well, he has his drivers learners book to read, loving watching the footy and met up with a band already who was looking for a bass player. Dylan is appears to be very happy and much more out going since we arrived. We have introduced him to Jenni's nephew today and they seem to be getting along well. Plan is they can start high school together so Dylan will have some more confidence to the whole "lets try school again" thing. He is experiencing all different Aussie food he had forgotten about. We have eaten fish and chips, red rooster and meat pies and I didn’t realize how much I had missed prawn crackers from the Chinese shop! Then when I went to Coles (supermarket) I lost my mind with filling the trolley (cart) with all the snack foods and drinks we had missed, like cordial, twisties and bbq shapes. I even found that Milo have a cereal now, had to buy that! Tim and I have spent most of our time outdoors, it’s great to have a garden to sit in again. Next week we will be preparing the house next door for us to move into, we need one of most things, but once we have an income we can slowly build up again, third time is lucky hopefully.

Latest Media

Here is a a link to Channel Nine who did a short story on our up coming return home. Click HERE

TheTruth 365

Please read and support: http://thetruth365.org/

The following is from their website ~ Facts most of us do not know but should...Please make sure you sign the petition page!

Cancer Facts

It is impossible to measure the impact that childhood cancer has on it’s victims and their families by using statistics but research funding decisions are often based on numbers. Here are some facts about childhood cancer for you to consider:


Cancer claims the lives of more children each year than AIDS, asthma, cystic fibrosis and diabetes combined. It is the leading cause of death by disease in children and adolescents.

Each year in the United States, approximately 13,500 children and adolescents younger than 20 years of age are diagnosed with cancer, that’s more than a classroom of kids a day.

Approximately 2,500 children and adolescents die of cancer each year.
One out of every 300 males and one out of every 333 females in America will develop cancer before their 20th birthday.

35,000 children are currently in treatment for cancer.

Some 25 percent of all children with cancer die.

The causes of most pediatric cancers remain a mystery and cannot be prevented.

Childhood cancer does not discriminate, sparing no ethnic group, socio-economic class or geographic region.

About one in 500 young adults is a childhood cancer survivor. Nearly 2/3  of the survivors later experience significant and chronic medical problems or develop secondary cancers as adults that result from the  treatment of their original cancer.

In the past 20 years ONLY ONE new cancer drug has been approved for pediatric cancer.

Incidence of invasive pediatric cancers is up 29 percent in the past 20 years.

The average age of death for a child with cancer is 8, causing a childhood cancer victim to lose 69 years of expected life years; a significant loss of productivity to society.

Childhood cancer survivors are at significant risk for secondary cancers later in life.

Cancer treatments can affect a child’s growth, fertility, and endocrine system. Child survivors may be permanently immunologically suppressed.

Radiation to a child’s brain can significantly damage cognitive function, or if radiation is given at a very young age, limiting the ability to read, do basic math, tell time or even talk.

Physical and neurocognitive disabilities resulting from treatment may prevent childhood cancer survivors from fully participating in school, social activities and eventually work, which can cause depression and feelings of isolation.

Researchers estimate that 51% of moms and 40% of dads who have a child with cancer meet the criteria for “Acute Stress Disorder” within two weeks of the cancer diagnoses.

6 weeks to go

Soon we will be home, it all feels so surreal. I thought the time would go slow, but it has actually just hit me, how very close we are now. We fly home on 15th September and arrive home 17th September. The 16th gets lost somewhere in the sky I guess. Sadly that's my best friends birthday (my Aussie Jenni) but we will celebrate and in some weird way maybe it's a good omen. We have been busy packing and making arrangements, I didn't realize how much there was and is to do before we leave. When I left Australia, it was easy, adrenaline pumped my way there to save my child, but the return home is different. Mixed emotions of leaving people behind here, anxiety of seeing people I have not seen in almost 8 years and excitement of just being on home soil again. Dylan is doing great, he is swimming at the free pool across from our apartment everyday and making the most of his summer. Cain is playing his bass and doing the usual teenage drama. My other best friend Jennie (Alyssa's mom) is in Florida to set up her new life there, I miss her so much. I have seen a few parents who have come in for scans, knowing it's likely the last time I see them. It's so emotionally draining, saying goodbyes have never been something that I am good at, and neither is change. You would think by now that I adapt well, but in all honesty it's very hard for me. Bear is set up for 30 days quarantine when he gets to Australia, but we can visit him twice a week. Dylan will have his last scans in the last week of August and we are making plans on an oncologist in Australia I will work with for Dylan's 6 monthly scans. A HUGE thank you to Jim and Qantas for helping to get us home and making plans for us. Also a HUGE thank you to our friends and family who are ready and waiting to help us transition into Australian life again. We will be staying in Jenni's living room and plan to visit friends and relatives for about 4 weeks before we start work. Tim and I do have a few jobs in the pipeline so we are confident financially that we can be in our own rental by Christmas. This is the plan anyway, things change, sometimes you just have to go where fate takes you, ride the waves and try and keep your head above water. More children have passed that we knew well, and this is only a reminder of the cloud that will always loom over Dylan's life. But it has not rained, so we will keep on as if everyday is sunny and live it to the fullest. Dylan is a long term survivor, 8 years of living with cancer (yesterday was his anniversary). He is so grown up in a lot of ways, and immature in others. Tonight he was talking about swimming at the pool and how someone asked about his scars. He told her happily, he said he does not mind, but he does not want people to feel sorry for him, he wants to be treated like "normal". If you don't get regular updates on Dylan's blog, I will be back, but as you can imagine, I am per-occupied with the whole move right now. I do update a little more on facebook, and you can always send me a message via my page :) 

The Hartung’s are coming home

It’s time to announce the second biggest decision we have had to make, the first being to come to America for Dylan’s treatment. We have made the decision to return to Australia by the end of the year or a little earlier. This decision was not taken lightly and we have weighed out all the pros and cons of such a decision. I will attempt to explain it all as best I can. Everyone we have told and discussed this with so far has been very supportive and agrees completely with our decision.

Why we came to America for Dylan’s treatment in 2005

Dylan was 5 years old when he was first diagnosed with cancer, after 3 rounds of chemo, we were told that there was no more they could do and that they would not do surgery to remove the huge solid tumor in his abdomen that was wrapped around his aorta and straggling him from the inside. The reason they gave was because after surgery they had nothing to offer him for treatment for the cancer that was still in his bones, and that surgery would be a waste of time. We were told he had 2 -12 months to live, take him home and love him. After research we discovered MSKCC in New York who agreed to do surgery and that they had many clinical trials on offer after the surgery. Dylan had a successful removal of his entire tumor in February 2005. Dylan was 6 years old, and apart from long hospital stays, he was a happy kid who found enjoyment out of toys and celebrity visits, media interviews and the activities at the Ronald McDonald House. Dylan has done a total of 15 rounds of chemo, radiation, 9 clinical studies and various other drugs such as Accutane, Celebrex & Thalidamide.

How life is now that Dylan is 13 years old

Dylan is now 13 years old, and his disease remains the same…Stable. This is something that we did not anticipate, nor the doctors either in Australia, or America anticipated. We thought that Dylan would either die in a few years or be cured. By the end of 2012 Dylan will be 14 years old and we will have been here almost 8 years. Dylan has not been on any treatment for months and is doing great. We waited for hot 3F8 that was supposed to be “the one” and then we waited for the humanized 3F8 another one that was supposed to be “the one” and his body continues to reject that treatment. There are no treatments that appear to be having a huge positive impact on children with Neuroblastoma who are HAMA & HAHA positive. We continue to follow treatments being done elsewhere and do not find any that would benefit Dylan right now. We are waiting for something that does not exist yet…a cure that works for Dylan. Some children these treatments have worked for, and many remain NED, or they did not work for them, and they have passed away. Dylan is in limbo and has been for many, many years. Dylan’s treatment is not only medical but also quality of life, especially if his life expectancy is short. Nobody knows when Dylan will progress, ever though progression of disease is anticipated and his chances of a full life is extremely slim. Dylan has been stable for 7 years, yes we had a few scares, but his urine markers have never raised and progression was out ruled in those cases. Dylan’s quality of life over the past few years has not been the way we like it to be. He stays in his room and plays playstation and sleeps. He does an hour a day of home schooling and has only internet friends. We never have any money to do anything when we are not at work and he is too old now for toys to bring a smile to his face. Dylan’s needs have changed. He is a teenager now. We feel that if we returned home our lives would be very different and Dylan’s quality of life would be much better. In Australia we will have a car, and we can travel to the beach, to the country, to friends and family. Dylan will have his cousins and his grandparents. We as a family will have more money to do things and be able to provide Dylan with the life we want him to have.

The reality of Dylan’s cancer

If Dylan progresses tomorrow, MSKCC will only have to offer us high dose chemo known as ICE. He will use his last bag of stem cells and he will be very sick. If his disease progresses rapidly, the chemo will only buy a few months. We do not know if that's how we would want Dylan to spend his last months. If Dylan progressed a week after returning to Australia, we could still do high dose chemo to buy a few months or we could be surrounded by friends and family, and be home. In saying this, Dylan may remain stable for 2 more years, or ten more or even fifty more. We just do not know and neither do the doctors. We are living with the “what if’s” and have been living like this for way too long. What if Dylan progresses, what if Dylan stays stable, what if we cannot get back into America if we leave, what if I get hit by a bus tomorrow, we just cannot live like this any longer.

In Australia we will live instead of exist. Why exist if you do not live your life. There is no point on Dylan having these extra years if he cannot live them. We asked Dylan if he wanted to go home. His response was “I thought I had to be in America to live” we replied that he used to have to be, he had to come here or he would have died. But now he can be alive in America or Australia because there is no more treatment here for a cure and if we wait for a new treatment, it could be years, and if a “cure” is found, we will move heaven and Earth to get him back here to have it. He replied “Hell yeah I wanna go home” I wanna go to Queensland, the family vacation we planned before I got sick and we will be able to do so much more things like Phillip Island, I wanna see the penguins again! I wanna see Nana, Gran and Pop and Uncle Rick and I wanna have a backyard. We told him by the end of the year we plan to leave and later that night he came to us and asked if we could go home sooner!

Did we stay too long? No we do not feel like we have. We had to give it a go for as long as we could and on an average Dylan has done more than one clinical trial a year to try and find the cure. But when is enough, enough. Do we do this for the next ten years? I always tell people who come to me for advice to follow their heart and their gut instincts, and now we have to take our own advice. We do feel this is the right decision, in our heart of hearts. We are going home on our terms, not because we have been told to, not because Dylan has died and not because the hospital recommends it…it is our decision and we have finally made it. Over the years we have seen many international families do the same as we have, and travel to MSKCC for their child’s treatment. Many of those children died, some were cured and went home, and others like Dylan went home with stable disease and continue their lives at “home”. We feel we have more than tried EVERYTHING possible and given it our best shot. It’s now our turn to go home and “live” and we are so grateful that we are doing this with Dylan and not taking him home to bury.

We have some concerns about where we will have Dylan’s basic medical needs tended to. We are not comfortable with the oncology team at the hospital in Australia he was diagnosed at. But there are other options we are exploring. We will just continue with his supplements and have scans done every 4 months or so to see where we are at. We are unsure about whether we will be able to return to the USA due to the complex visa laws, however I do believe in my heart that we can jump those hurdles and maybe return once a year for scans at MSKCC and stay a few weeks and return home like other international families do. We also have so many dear friends we want to visit and just love our oncology team at MSKCC and will want to see them. We will not have the financial hurdles to return, since we had health insurance that has finalized any debt at MSKCC now. We also have funds still in the Dylan Hartung Fund that will cover the costs of scans at MSKCC and any treatment we may want to do. In saying this, we will only do more treatment if it already has shown to make a huge difference to patients, Dylan has done his share of jumping on new clinical studies, now we will watch and wait from Australia.

Are we giving up?

No, we know one day a cure will be found, but we do not know when. Everything IS Possible, it’s possible Dylan will continue to be stable for many many years, it is also possible he may be called to heaven in a few years. We are victorious, we had a 5 year old with 2 – 12 months to live. Now we have a 13 year old with stable disease and an unknown life span. We set out to save our son by going overseas, and we have done just that, we still have him. We may not have him cured but he is here and he is generally well. He does suffer some fatigue, have some hearing loss, bad teeth, short stature and some occasional leg pain, but they are small prices to pay to still have your life. Now he has to LIVE it.

Cain

I have to say that I truly do have the most amazing 17 year old in the world. I am so proud of the man he is becoming and could not have ever wished for a better son. As a parent we always question our parenting skills and if Cain is any example, then we know we did a great job. We knew that this decision was going to hit Cain the hardest. He is established here and is the only one out of all of us that actually has a life he is living. We dreaded telling him, we even held it back until after his service club travels with school to Alabama & Tennessee because we did not want to spoil his trip. To ease the burden, we decided to let Cain make his own decision. We explored the idea of him asking his godparents in Long Island if he could stay with them until he finishes his high school diploma in 2013. We did not ask them until we told Cain to see if that was an option he wanted to pursue. For us leaving Cain behind would crush us, but he is almost 18 and in Australia you’re an adult, and we were making huge decisions when we were 18. The day after his trip he went to rehearsal and on his return we sat down with him after dinner. I had made a pros and cons list for him to look at after we explained the decision and why we have made it. After a while of us explaining everything his eyes glazed over, and he gestured for us to stop talking and he began to speak. He said that he completely agreed with our decision and that Dylan is not living his life with quality. He said that through everything we have been his rocks and he has done so well because he wants us to be proud. He said music is his life and that he has done so well at it because of us. We all cried and told him how so amazingly proud we are of him and even though we would be heartbroken to not be with him, we want him to do what he wants to do, he deserves this choice. He said that he came to this country not knowing we would be here this long and he also knew that eventually we would go home with whatever outcome it may be. I handed him the pros and cons list of staying here a year longer without us and he pushed them away saying we came as a family and we leave as a family, that if anything ever happened to Dylan while he was not with him, he would never forgive himself. After more tears he went for a walk. It’s been a week now and he is doing better with the decision. He told me his teacher cried when he told him, and that his girlfriend is crushed. We have always told Cain that planning for his future here is hard and that at any given time we may leave, there may come a time when our visas are not approved or when Dylan’s medical condition changes. He is so smart and wise, and it’s so hard for him, but he knows that he will have a life back home and that he can return to the USA for his music career if he aspires to. He can audition for the College of the Arts in Australia and apply for scholarships to continue music schooling in the USA if he so wishes. Music is his life, and I believe that if you want to do something or you want to become the best your possibly can, then you will, whether you’re in America, China, Italy, Australia or Timbucktoo! The music world opportunities are definitely better in America, but there is no reason why he cannot continue his music career in Australia and return one day.

We are staying until the end of the year because of our rental lease and because we want Cain to have another summer at music camp. We also want him to finish the 11^th school year. We also need to pay off our debts and gather Dylan’s medical records. We will only be bringing our personal belongings back, the cost of shipping furniture would be more than buying it at home. We of course no longer have a home…we lost it and our furniture, but will have a couple of plans in the pipeline on staying with friends and eventually renting a place to call home. It will take time but we will get there eventually. We have employment lined up and once we get cars we can start working. The trick is to get money to buy the cars to go to work LOL, or the job to get a loan to buy the car. We will iron out those details and soon be on our feet, after all, we are Hartung’s and we have amazing friends and family anxiously awaiting our return. We will miss New York and the friends we have made who have become part of our family. I am sure my future journal entries will reflect that.

I know this will spark many comments, emails and so on. Bare with me when it comes to replying :) Oh speaking of Bear, yes he will be coming home with us, of course! We cannot live without our Boo Boo Bear.