Hi Everyone
Sorry I have not updated for so long, but I have discovered that I do not have internet access after 8pm and the last few days and nights we have been very busy. We saw Dr Modak on Thursday, what a wonderful man. MSKCC is everything I had read about and more. It is 200n the hospitals in Australia, so much more professional and modern. The hospital is only for Cancer patients so we don’t have to worry about Dylan’s exposure to other illnesses. There are signs everywhere telling visitors and patients to notify hospital staff if you have a cold, so that they can isolate you, to protect other patients. The facilities are amazing and they even have a teacher there that I have registered Dylan with. She will teach Dylan and he can have lessons at the hospital or at Ronald McDonald House. We have been issued with a special card that we take to every procedure and hospital visit, for easy access to Dylan’s medical history.
Dr Modak said that he still had not received the samples from Australia as requested to Dylan’s doctor, so we have to basically start from scratch with all the initial testing. Because of this, the surgery by Dr LaQuaglia will be now postponed until the 8th or 9th February. Dr Modak was pleased and surprised to see that Dylan was so well in himself, although he was concerned about his weight (16.5kg). The nurses informed me that hickman line dressing changes and line flushing is done by the parent at home, so they showed me how to do it and gave me the supplies. I need to change Dylan’s dressing and flush his lines every Mon, Wed and Fri. On Mon and Fri I also have to change his caps on the end of each line. The lines ends were changed at MSKCC, to easier blue caps that give convenient access for me to flush. They also have a needle free environment, so that means no more needles for Dylan during any procedures…YAY!
On Friday, Dr Kushner took four bone marrow samples (aspiration) two from the back and two from the front hips. This was done under anaesthetic, which was administered via his hickman line, instead of a needle in his hand as has been done in the past. After the procedure, Dylan suffered a bit of pain and it has continued for two days, but it is getting better. Dylan also had a CT and MIBG scan done on Friday. This involved some dyes to be administered to show up areas during the scans. I had to give him oral medication to protect his thyroid from the effects of the dye for three days. The next appointment with Dr Modak is on Wednesday, once he has had the chance to review the test results and histories. Wednesday, Dr Modak will be able to give me a clearer picture of the extent of disease Dylan has in his body and what the next few months of treatment will involve. After surgery, Dylan may need more chemo before we start 3F8 antibodies, depending on how much disease is actually present in the marrow. The idea is the get him as clear as possible before we start 3F8.
Dylan’s gastric peg is very red and sore at the moment also. I think it may need adjusting as he has gained slightly more weight since it was inserted. It has been arranged for him to see Dr LaQuaglia on Tuesday to assess it and look at the possibility of changing it to a button type device. I think this will be an easier and more comfortable access for tube feeding. Dylan and I have been making the most of the time we have at the moment because after next week, most of our time will be spent in the hospital. We have been to the massive “Toys R us” in Time square, driven past the Hudson river, Central Park and one of the remainder sites of the World Trade Centre. Friends and Family gave Dylan money to spend on toys in America, and we found that toys are actually very cheap here, even when converted to Australia money, so we have been able to get heaps for our money. I am now spending nights building complicated car tracks that take me hours to assemble. This is usually Tim's job, but now I am both mum and dad. We have had the pleasure of spending time with our new friends. Dylan has really hit it off with little Thomas (4yrs old) and we plan to stay at their house next week for a few nights. We will also take a trip to Central Park Zoo before surgery date, so that Dylan can enjoy himself while he is still well. Last night our friends took us out to dinner and towards the end of the night, Dylan wandered off to a different table to sit by himself. A few minutes later, a very attractive young lady went and sat with him and chatted, asking him if he was o.k. She told him that she was a cancer survivor from 15 years ago and that she had spent 14 months in hospital herself. His ears pricked up and he chatted with her for ages, making her laugh and sharing his wonderful personality with her. I went over and sat with them, she told me that she is just “smitten” with him. She said she wants to take us to see the sites of New York like the Empire State building and that she has connections with the NYPD to get Dylan on a police boat to view the statue of liberty. She also thinks she may be able to get him on a NYFD Fire truck too. We exchanged phone numbers and she said to me that he is just gorgeous, and that if he was 20 years older…..LOL. I went back to McDonald house with a smile on my face, Dylan had picked up a chicky babe in New York…how cute!
I am starting to get home sick, and I miss Tim and Cain terribly already. Dylan also misses them, and showed this by bonding so closely to Thomas’s father. He is a wonderful caring man, and really does make Dylan smile. Watching this made me cry though, I guess because it should be Tim. But this will have to be the way it is for a while. I have met lots of families at McDonald house, who have children with Neuroblastoma. In fact almost all of them have it. Some have lived here for 18mths to 2 years or more. This scares me to think that I may not be home for this long, but it has to be this way, I have to save Dylan. I know that we are in the best possible place in the world for him, and that is a great feeling.
Dylan is in the play room, next to the computer room at the moment. In a few minutes we will head up to the balcony to make a snowman and do some snow angels. I am sure we will also end up in a snowball fight too!
By the way, postcards are on their way, as soon as I can find a post office! It's not as easy as you may think, things are very different here! LOL
