Her platelet count was WHAT?
Yep, Eden and I spent another day spent at the outpatient clinc for a refill of platelets. She's burning them up like crazy! Her platelet count was 22, 000. Normal is 150,00 or more. Not very much fun for such an energetic little girl.
She had a minor fall from her bike last night that looks as if she crashed into a moving car (she just fell off, no car). She has bruises all over her poor little body from just playing. The injection sites for the Neupogen that we give her daily to boost her white blood cell counts look awful.
Today's counts were as follows:
- white blood cells count: 1.0
- Red blood cell count: 3.53
- Hemaglobin: 11.1
- Hematocrit: 30.6
- Platelet count: 22,000
ANC (Absoulte Neutraphil Count): 360 which is DANGEROUSLY LOW!
So when I say please visit responsibly, I'm not trying to be mean. I'm trying to get everyone to understand that her counts are extremely low and even a sniffle or virus could land her right back into the hospital. If her fever hit 100.5 degrees or more we are assured of at the very least a 24 hour inpatient vistit. It will probably be like this off and on for a while. We just want to screen visitors (even better, have them self-screen) in Eden's best interests. We like having people around, but Eden's health comes first.
Eden is scheduled to fly to Philadelphia on Wednesday morning to meet with one of the foremost neuroblastoma researcher/doctors in the US. She will be meeting with Dr. Maris at Children's Hospital of Philadelphia (CHOP) for her consultation visit to prepare for her next type of treatment.
Thursday Eden is scheduled back into the outpatient clinic for labwork to be done and to see if her counts are going to recover fast enough to start chemo as scheuled next week.
Friday we hope that she will be able to return to school.
Speaking of scheduling; since Mom and Dad are both going to be off on Wednesday to fly to Philly with Eden, niether can take off Thursday to take her to clinic. I had planned to spend all day on Thursday helping my friend, Stacey, and my mother-in-law, Hope, to organize, price, pack, transport and prepare for the Benefit Garage Sale for the Eden Adams Fund. I know that I will not be much use to them as I will spend most of the day at the hospital with Eden. If there is anyone who might like to volunteer to help prepare for the garage sale or to volunteer to work at the sale on Friday and/or Saturday (9 AM to 3 PM both days), please email me as soon as possible at mailto:firstname.lastname@example.org. Thanks for even considering helping. This started out to be a small sale and through the loving donations of our friends, family and community it has become HUGE. We have about six garages full of things to be priced, sorted and organized by 9 AM Friday morning. Whew, pray for us all.
Other then having low counts Eden is her usual happy self. She is excited to FINALLY get to fly in an airplane. She is excited to go to a new hospital. She is excited to meet a new doctor and nurse practitioner. She's just a happy girl.
Everyone that will be at CHOP tomorrow: Eden and her mom and dad will be at the Woods building. Please be sure to introduce yourselves to them. I am so bummed that I cannot go but I always get left behind. Mom and Dad can sign consent forms and I cannot, so here I'll sit worrying myself into a frenzy until I know that they have landed safe and sound back in Columbus. It's not that I won't have anything to do with myself while they are gone, but just the fact that I won't be there to ask my questions of the specialist. ARGH! Ah the perils of stepparenting!
So that's what's up today. Sorry for the delay in updates, but I am busier then a one-legged man in a kickboxing contest!