Low

Colin's count yesterday was 1k, he got his second dose of Rituxan. Trying to hang in there and not lose it completely.

Hi -- don't lose it! We are all here for you. My daughter was at 3 the other day (after being way up at 33 for a few days). We are doing Ivig for first time and, ick, it's hit her like a sledge hammer. I think sleep for the moms is key so we don't lose our minds. If you want to call and just rant on the phone, pls feel free. send me a private message.
good luck. Hope his numbers are up and you are feeling okay.

My son had his last rituxan treatment six months ago. Results are slow, he was at 3k his first treatment, up from 1k and IVIG two weeks prior. Second treatment 14K, third 2K. Over the next three months they rose to 114K and 5 months 203K, first normal count in 2 and 1/2 years. This past week he has a minimal bruising no petecheai. Trying not to fret, and putting off another count as long as I feel safe, he is being a normal boy for a change. Even playing ball.

As far as mothers sleeping, not sure what normal sleep is anymore. Keep living on auto pilot, there are brighter days. Sometimes few and far between, but we relish each and every day he can be an 11 year old boy. He was diagnosed 2 and 1/2 years ago, and tried many treatments. Some worked a while and then refracting. After this past year (the toughest for us) I understand the wait and see method. A strong support system is my sanity, because this disease is different for every one and has no specific pattern for any one. Stay strong and have faith.

KFS,
thanks for the helpful post. We are only 3+ weeks in, but I am seeing the wisdom, too, of wait and see. = as much as that is possible when counts are in the single digits. My 12 yr old daughter is just home from first ivig treatment. She missed a big day with friends yesterday so we are thrilled to hear her laugh in other room with 2 closest friends. Like the sound of god, really. But now she is getting a headache and feeling nauseous. Hope that passes and does not worsen.

I get it about the sleep but our older daughter is recovering from an eating disorder adn we've had two family members die of cancer in last year so i am trying like crazy to sleep whenever I can because it's my oxygen mask. You know what they say on airplanes -put it on the mom first. I find my friends a huge support too.

with hopes of high platelet levels for all kids,
firkins