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Christopher
This page has been created to keep family and friends updated on Chris' treatment. Chris was diagnosed with Stage IV Neuroblastoma April 16, 2004. He went through 6 cycles of Chemo, surgery to remove the tumor, stem cell transplant, radiation and 6 months of Accutane. He was NED(No Evidence of Disease) and OFF treatment for 6 months.
Routine scans on 12/9/05 detected new growth on his brain. Chris had relapsed. On 12/21/05 Chris had surgery to remove the tumor. He then did 5 more rounds of chemo, 18 doses of radiation, and is currently going through antibody therapy at Sloan Kettering in NY.
Chris is an energetic 5 year old that loves Baseball and Rock and Roll, trains and airplanes. He has a 3 year old little sister Breanna.
Journal
Monday, May 5, 2008
I wrote another update since last time, but forgot to post it. You can scroll down and read that first if you want. Now I can tell you what's been going on since then. We have managed to stay out of the dr's office for a week and a half. On the 25th Chris ducked out of school early to watch the AirForce Thunderbirds practice for the air expo. He was invited to watch them practice and got to meet them afterwards and get autographs. He had a great time. On Saturday we tried to go see the airshow and spent about 3 hours stuck in traffic. We did get there eventually and the kids seemed to enjoy it. Last week I had a business trip to California. The kids had a great time with grandma and threw me a welcome home party friday night. This saturday we went to watch the Dragon Boat races. A friend was participating so we went out to cheer them on. The dragon boats look neat. They have 20 people rowing the boats, there's a drummer in the front to set the speed and a decorative dragon head and tail on the front/back. Sunday was my brother Steve's birthday and we went to a cookout at his place. He roasted a pig and fried some alligator tail. The kids had such a good time they didnt want to leave.
This morning Chris went in for his ear surgery. Nothing too major. They scraped the ear walls to get the crud out. It was really stuck in there and bled a little. They also put ear tubes in. The dr said it might be that the radiation damaged the ear wax gland (I didn't know there was such a thing) and that's why the consistency of his wax is getting it/keeping it stuck in there so well. He did pretty good. Woke up afterwards and asked me "What happened to me?" His ears will probably be pretty sore from all the digging they did.
Well that's it for now. Thanks for checking on us.
Linda
Friday April 25, 2008
I'm getting a little tired of dr's appointments. Last Tuesday Breanna went in for tonsilitis. Wednesday Chris had his clinic follow up. Thursday Breanna saw the asthma dr. This Tuesday Breanna met with the ENT and Wednesday Chris saw the neurologist and his ENT. What came out of all of those appointments? MORE appointments, follow up appointments, 2 surgeries and more specialists. ugh.
Lets talk Breanna. She's quicker to update on. The tonsilitis seems better. She had me freaked out last wednesday night though. Had a nasty asthma attack. On Thurs she saw the asthma guy. He said she sounded all right but gave me some prednisone to hold onto just in case she got worse. He also put her on some prevacid. She's been having lots of stomach trouble and the thought is it's the same reflux she had as a baby. This tuesday she saw the ENT to discuss having the tonsils taken out. He tried to give me the scare tactic on this is a serious surgery and outlined ALL the risks, do you really want to do it or just treat the infections when they come? But when I consider tonsilitis 6 times in the last year, every other time it goes into asthmatic bronchitis, it's just too much. Waiting to hear when they'll schedule this. Going to wait till school is out in June though. On the plus side she's feeling better and the reflux meds seem to be fixing the stomach issues.
Where to start with Chris. Well last week he was seen in clinic. Mostly good news there. They only gave him 1 shot (sort of testing the waters I guess) and will check to see if his titer increases in a month. His lab work showed his potasium was high. NP said that wasn't a concern unless the creatine was low. Oh it is a little low. Well he's probably just a little dehydrated. OK... I don't know. I think I'll watch to see what it looks like next month. The dr also thinks he needs a follow up with the radiation oncologist, and endocrinologist, and the head/neck oncologist. And she'll work on the neuro/pysch eval.
Wednesday he saw the neurologist and the ENT. Neurologist didn't seem to understand what I was explaining on the arm. Said that it's a good idea to see the movement disorder guy. Wants Chris to have another EEG (it's been a while - this scan reads the brain waves and looks for seizure activity) and follow up with him after we see the movement guy. Also had some blood drawn to see the level of the seizure meds in his body (I guess to see how he's metabolizing it). At the ENT appointmet the dr had to pull some wax out of chris' ear. Got the first piece. Went for the second and Chris screamed and screamed. Dr gave up said it's stuck to the ear/bone/whatever and he needs to get it out under sedation. I brought up that he's had 6 ear infections in the last 6 months (I was surprised when I counted the other day) and should we deal with that at the same time. He agreed and they're scheduling that too. They also took ear molds to get some custom ear plugs so he can swim this summer.
Hopefully we'll avoid the dr's for a few weeks. Everyones trying to schedule something in MAY and I just can't fit it all in. I'm going to keep the stuff thats most important and push everything else back to june/july/august. Today Chris was invited to watch the Thunderbirds (air force pilots) practice for the air show tomorrow. After that he's got a birthday party to go to and Breanna and I might do something fun tonight. Thanks for checking on us.
Linda
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Links: http://www.alexslemonade.org/ Alex's Lemonade Stand
http://www.lunchforlife.org/home.aspx Lunch For Life
http://charityphotosvc.com Charity Photography to benefit Childrens Neuroblastoma Cancer Foundation
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