Drama after drama but all is fine

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

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

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

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

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

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

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.