Since I last wrote, Evan received another round of Rituximab along with cytoxin. His blood counts dipped, but overall he made it through quite well. It looked as though his HAMA was in the negative range which gave us hope that he could start the antibody therapy in NY again (and get a break from chemo). But 2 weeks later, he tested very close to HAMA positive. That means he cannot start antibody therapy again yet. Why it went up, nobody knows. So, yesterday he started his 14th round of post-relapse chemo.
The results of his scans from 2 weeks ago are great. NED, no evidence of disease. That is ALWAYS welcome news. Along with the MIBG bone scan, bone marrow biopsies, CT scan, MRI, and urine levels test, he also underwent a hearing test. He has mild to moderate hearing loss due to one of the chemo agents he has received. The audiologist said that he doesn't need hearing aides at this point, but we need to let his school know.
He has started kindergarten and is doing well. He gets homework (just like the high schoolers) which makes him feel like a big guy! He has recess just before I pick him up after school and as soon as we get out of the building, he runs toward the playground and squeezes in all the activity he can before we have to get going. We love his energy and we are thankful for it.
His HAMA level will be tested in a couple of weeks again. The doctors do not expect the benefits of the Rituximab to be evident for about 6 months. So in the meantime, he will continue with chemo.
My mother has entered Hospice care. Her struggle with ovarian cancer has been long, painful and challenging. Her strength and persistence has been absolutely inspiring. Please say a prayer for her.
Thank you for sending us such positive and caring thoughts.
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This thread makes me thankfull for what time I have on this earth. I could only hope that I may be as brave as he if I have this to indure... I shed a tear each time I read about him...
Thanks for keeping us informed about how he is doing...
Evan had his scans last week at Sloan. I am overjoyed to report that he has no evidence of disease! Phew! The last month or so he has been complaining on and off about little aches and pains. For a kid who is in the position that he is, every pain is cause for concern. You just never know. You try to be easygoing about it when he comments on his pains so as not to alarm him, but inside your stomach sinks into your big toe and your heart skips a few beats. But fortunately the scans say that he is N.E.D!
He will more than likely be getting antibody therapy back at Sloan soon, since he is HAMA negative. We have no date scheduled yet. He is due for some sort of therapy since he hasn't had chemo since the first week in November. After 15 rounds of post-relapse chemo, we are grateful that he can get a break from that, but we know he needs treatment soon. We hope to have a date scheduled very soon for antibody therapy.
In the last few weeks, 2 more little fighters that we knew have lost their fight with neuroblastoma. We hang on to our hope and are so grateful for Evan's good scans, but we are slapped with the reality that good scans were as of December 5th. This disease is truly a beast. We hope and pray Evan's good scans are forever.
My mother lost her battle with ovarian cancer on October 1st. She is at peace and no longer suffering. I have never seen anybody fight harder than she did. I was lucky to have her.
The Cookies for Kids Cancer drive is up and running. Please visit http://www.cookiesforkidscancer.org and send them as gifts or treat yourself to some great cookies with 75% of the profits going to fund research to find a cure. When you purchase them, please select "Band of Parents Foundation" as the recipient of your generousity. Your money will go to Memorial Sloan-Kettering Cancer Center and be used specifically for neuroblastoma research.
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Paul, that great news and please pass our good thoughts on the the family. I look forward to hereing about Evan each time I see thei thread pop up but at the same time I worry as to what the outcome will be when I read it. Evan and his family are in my thoughts and prayers constantly. Also please on to them that I wish they have a Merry Christmas and a wonderful new year...
While some of you boys are keeping busy posting up crapola in a few recent threads, there are people out in the real world with real problems. Serious problems.
Evan spent his Christmas vacation in a hospital, on oxygen, being medicated and in pain, fighting the good fight in his battle against a terrible disease. He is on the mend now and continues to amaze me with his strength and determination.
Keep Evan and those like him that have serious real life issues to deal with in mind as you go about your new year. Be thankful for your health and what you have because you never know what the future holds.
Glad you're home Evan. Keep up the good fight buddy!
WEDNESDAY, JANUARY 07, 2009 08:11 AM, CST
Evan had antibody treatment in NY over Christmas week. The plan was to get 3F8 Monday through Wednesday, skip Christmas day, get it Friday, then get his last dose on Monday. The first 3 days were tough on Evan, probably since it had been about 17 months since he had antibody therapy. He had more lingering pain throughout the day and slept all day and night.
On Christmas he had little energy and little appetite, but we thought that was just due to 3 days of therapy. But at 2:00 a.m. on Dec. 26th, he woke up with a 103.9 degree fever and a wet cough. We took him to Urgent Care at Sloan and they hydrated him and started him on antobiotics (which they have to do because he had a fever and he has a central line.). We stayed at the hospital until the PDH (pediatric day hospital) opened and he received antibody therapy. That night he spiked a fever again. They told us to go back to Urgent Care in the morning if he still had a fever. He did. We left the hospital at 1:00 p.m. Saturday afternoon and went back to the Ronald McDonald House.
That night, he popped his fever again and was breathing in a very shallow, quick way. We took him back to Urgent Care and they admitted him. They gave him a ton of antibiotics and started nebulizer treatments every 3 hours around the clock for 6 days. They watched his blood oxygen level very closely and put him on continuous oxygen. He also had diarrhea. C Diff was suspected but later tests indicated that was not the case. The doctors thought he might have pneumonia and were discussing a lung culture when an RSV test came back postive. He did not get a 5th day of antibody treatment.
On Friday they stopped continuous oxygen and on Saturday stopped the nebulizer treatments. They released him late Sunday afternoon. He spent 8 days in the hospital and we got back home on Monday, Jan. 5th. He is feeling better and is getting his strength and appetite back.
He will get his blood drawn on Thursday to make sure that he remains HAMA negative so that he can get the next round of antibody therapy. Fingers crossed.
While we were in NY, so many friends thoughfully sent cards, gifts and goodies for Christmas, along with supportive phone calls. We thank you so much.
Thanks to those who purchased cookies for kids cancer! Just so you know, the cookies are now available year round so please keep it in mind if you need a gift that does more than just make the recipient happy. www.cookiesforkidscancer.org
I think of Evan alot. Never even met the little man. I hope he keeps kickin ass and taking names. Bunch of grown men I know would have given up far short of where this little man has fought to get. God Bless you Evan. You too Nimrod.
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I shed a tear each time I read about him...
December 2008 Update
Evan spent his Christmas vacation in a hospital, on oxygen, being medicated and in pain, fighting the good fight in his battle against a terrible disease. He is on the mend now and continues to amaze me with his strength and determination.
