Still Dependent Upon the Gift of Life

Christi's blood counts drawn early this morning warranted a transfusion of platelets after school. They were down to "7". I don't recall her ever having platelets that low before, yikes! I was so worried about her getting hit with a ball or something at recess today, but God protected her; she had another fabulous day of school! Whew! We walk a fine line between trying to live a normal life while wanting to protect and hover around her - like keeping her in a bubble. Dr. Maris reminded me last week that we are in treatment for palliation not for a cure, so that also weighs in on our decision making.

Last week I managed to discover the kind volunteer I'd been curious about. I spotted him as he was unloading the boxes of platelets into the hospital from the trunk of his little old car. I guess he had no idea who was getting the blood products as he thought she was a "he" (ha!) but I profusely thanked him anyway for his volunteerism and help. (He's an Angel for driving to Toledo to get the needed blood products for patients in Tiffin. That kind gesture allows Christi and I to attend school!)

Dr. Maris has informed us that Christi has received FDA approval for the BSO/Melphaln attempt on a compassionate release basis since she doesn't meet the eligibility requirements. Now we're still waiting for CHOP's IRB to get us the required go ahead, but he's 99% certain it'll happen.

Tomorrow Shayne will sign for her stem cells from MSKCC to be released. (I really don't want all of them to be shipped down to CHOP- where Columbus shipped her other ones too, but it appears that is what will be happening.) She also has frozen stem cells in Los Angeles, but those were the ones that were purged- when 90% were loss in the process so it's a very small batch, most likely not enough to rescue her with. It really bothers me having nearly all of her bags of cells frozen in just one location now. We know of a little sweetie, sadly no longer in this fight, who only had stem cells in New Orleans and the flooding this fall destroyed them and she wasn't able to be rescued.

When we had our meeting last week with Dr. Maris I asked him where the current dosing level of BSO/M-PAN was at in this Phase I (dose determining) trial. Next I said as I lifted my hand up above my head, "Since this will be done off study, we can set the dose as high as we want, right?" Dr. Maris informed me that the FDA would allow him to set it up one increment higher, but no more. I told him we wanted to do that and he agreed to my request. Now don't remind me of that if this turns out to be fatal. What Shayne and I keep reflecting upon is that another NB expert on the west coast who has a lot more experience with this study than CHOP has informed us that he doesn't believe it's currently high enough to do anything. I guess one increment up is a small step in the right direction.

Finally, I received FABULOUS news today! On May 18th Christi needs to be at CHOP for one full day of testing. I didn't have any problem getting a decent price on a flight to Philly early that morning, but due to the fact that the return must be later I couldn't get a flight back to Ohio and also one that wasn't priced in the "outrageous" category despite my searching and searching. Last Friday I desperately called "Angel Flight" to put in a request and when I still hadn't heard
anything back from them I called to inquire on my lunch break today. Tonight I learned that the awesome man (Dale) who flew Christi and I out to CHOP in his plane back in April of 2004 has volunteered to fly us back that night. This will allow Christi to attend her final day of 4th grade on May 19th!! This is so important to all of us! We've been so richly blessed! Thank you, Dale and Angel Flight!!

In closing, I say: Blood donors please consider yourself hugged! THANK YOU for saving my daughter's life tonight!