Crappy Counts and yet One Good One

It’s been a v-e-r-y l-o-n-g, t-i-r-i-n-g day, but at last we are finally back at Ronald. Because we needed to be at the hospital so early this morning, we caught the CHOP employee shuttle. (Did you know if you catch it on the other side of the street instead of going to the hospital, you get a lovely little tour of the city? Oops! Thankfully, much to my surprise, Christi did not get car sick, whew!) She had been unable to eat since last night due to her tests today and therefore she was very hungry. I kept insisting that I wasn’t going to eat until she could, but when she needed a bathroom break I made a break for the Grant’s goody bag of snacks. One of the CT scanners was broken. At least this gave me time to run over and check on Jaret and to pray that he is soon pain free. Christi’s scan ended up being an hour late – then we were off to the cafeteria where she devoured everything on her tray and some on mine too!

When I asked of her blood counts the sweet nurse replied, “They’re not very good.” Oh, I thought she’d need platelets, but I still didn’t expect the number to be so low or the hemoglobin to be horrible as well. (Oh, did I mention the white count? I guess there is no need since she really doesn’t have that count either. She’s still neutripenic! Errrgggghhh!)

May 2, 2006’s Crappy Counts:
.4 white (normal 4.5 – 13.5) (Yes, I typed point four correctly.)
16 ANC (normal 1000 ish) (No, I didn’t forget any zeros after the “16”.)
18 platelets (normal 150-400)
7.2 hemoglobin (normal 11.5 – 15.5)

Well, I knew that meant for a horribly long day in the clinic needing both platelet and blood transfusions. Thankfully, we ran into Tresslers and Ehlerts which always makes us happy and Christi played puzzles and read to sweet Penelope while she was getting her chemo and Christi was getting her blood I’m still concerned that fever may still set in which would land her in the hospital and cancel our flight back with Eden tomorrow.

Dr. Maris has a busy day tomorrow with so many of our friends here tomorrow. The tension is high. (Late this afternoon I asked for Christi’s CT scan, but was told I couldn’t have the info until Dr. Maris read it.) Our prayers for good scan results are with Bryan, Penelope and Ruby. May God give them some much needed good news after the years of treatments they’ve all endured.

We made it back to Ronald before 6:00 PM. Christi was THRILLED to have a package waiting for her on our bed! (Thank you, Elizabeth!)

Shayne was going to be trying to nail down how to get Christi’s transfusions done locally today. I haven’t heard if he had luck or not. (Does anyone else find it ironic that a little girl who has collected hundreds of pints of blood locally and who was just featured regionally as the “Pint Sized Hero” for the American Red Cross isn’t able to get any of her own needed transfusions done locally? Hmmm. We’ll see what Shayne was able to work out today.)

Oh, did I forget to mention that ONE GOOD BLOOD COUNT?? I can’t believe it! It’s a VERY IMPORTANT ONE – her LDH wasn’t just “normal” but the lowest LDH she’s ever had here at CHOP. (Except for that “fluke” of 266 one time, which was determined to be just that!) LDH: 450!!! Normal 420-750!!

I have hope that this will give us good news tomorrow. I expect to see liver involvement on the CT and the MIBG and other spots on the MIBG, but I pray it’s not any worse. Dr. Maris said he was thinking either more chemo like BSO/Melphan or a less toxic clinical trial like fenritnide, but all of that will depend upon tomorrow morning’s MIBG scan. With a little luck and a lot of divine intervention we’ll be home tomorrow night!

PS: Thank you so very much to all who’ve been able to help with Eric’s fundraising efforts for the CNCF (Children’s Neuroblastoma Cancer Foundation). We are full of gratitude to Eric and all who have donated and we wish Eric well in his biking race. (Soon Eric and Alicia will be coming to Tiffin where he and Shayne will compete in a bike / running race as they did last year.)