Wednesday, August 10, 2011

Finally an update!

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 2nd 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.