Rough Week, Best Friday

4/13/2012: 11:00 PM

We found out on Thursday that Davis counts look great. His ANC (immune system) is over 1800 (Healthy kids run over 1500)! All of his other counts are better than they have been in a long time.  The phone call from clinic also brought some better news. Davis was not scheduled to get a lumbar puncture (spinal tap) as originally planned. Apparently, the LP on the roadmap is for low-risk ALL patients. Davis is high-risk ALL and received cranial radiation, which exempts him from this LP. Davis was more than thrilled to hear this news.

Doesn't he look good? He gained four more pounds. He
now weighs 66.7 pounds. Hard to believe that he was
nearly fifteen pounds lighter a couple of months ago.

So chemo today was fairly easy. Davis was accessed, given a chemo push of Vincristine, and de-accessed. The whole chemo process took less than five minutes. He did receive a new treatment as well. He opted to try a breathing treatment of a mixture of Albuteral and Pentamidine to protect his lungs from bacterial infections and pneumonia. He has been taking Septra, an antibiotic, twice daily three times a week. Since he still fights, stalls, or drags out medication time, we thought the breathing treatment might be a better option. Plus, the Septra can lower Davis' counts, whereas the Pentamidine does not. The drawbacks? The breathing treatment has to be done in one specific room that has special ventelation, and the Pentamidine smells and tastes horrific. Davis had his mask scented and he sucked on a ring pop to help diffuse the taste and smell. He had to stop the treatment a couple of times to blow his nose and wipe away the drool caused by the ring pop. The nurse, my mother-in-law, and I had to wear heavy masks to protect us from the Pentamidine, which was too potent for us to breath. After thirty minutes, the treatment was over, and Davis concluded that the Septra wasn't so bad after all. I hope a month of Septra-free living changes his mind. Thirty minutes of torture seems a better deal than swallowing down a chalky, crushed antibiotic twenty-four times a month, but the decision will be his to make.

Albuteral treatment

Pentamidine treatment

We finished in clinic around 1:00 PM and headed down to the cafeteria. To our surprise, the St. Louis Children's Choir (3rd through 6th graders) were singing. Oh, did Davis love this! He downed his hot dog and listened to the kids sing.

We had waited around at the hospital because Cory was selling ice cream at 1:30 PM in the abandoned nurses' station on 9th floor. Cory, his dad, and the life specialist, had created some cleverly named ice cream concoctions and were dishing them out for fifty cents a serving. You can't beat that! Cory's ice cream stand was a smashing success. Nearly all of the doctors and nurses showed up, and a handful of patients and parents did as well. Cory has an unbelievably tender heart. When asked, he said he was going to donate half of his earnings to Child Life and the other half to research.

Davis and Cory
The best part of our Friday.

Please continue to pray for Cory and his family. My heart aches for them. I can't say that our journeys are even comparable any more, but I feel a protective attachment to the 9th floor children and the families that have crossed our paths. We lift Cory up in prayer each and every day simply because he needs it. God can heal him, and we provide the faith.

Please remember Davis in prayer and positive thoughts as well. He has been struggling with some behavioral issues as of late. Despite the help of a psychologist and some low-grade medication, he still fights for control at home (common in children with cancer). While his behavior (talking back, not doing chores, etc) might be tolerated in some homes, it isn't in ours, which has lead to quite a bit of stress lately. My prayer is that this behavior subsides. I hope that as his life resembles his old "normal" life so will his personality and behavior. Honestly, I think dealing with the cancer is much easier than dealing with the behavioral issues that accompany it.

Well, we are finally in the thick of the maintenance phase. If all goes as planned, Davis won't receive another CBC until May 10th, and won't have chemo again until May 11.

Thank you for your continued support and encouragement. We draw our strength from it.

We will keep you posted.