Back to Reality

PHOTO: "Christi plays with the wonderful Anne Newhard at the Betty Jane Preschool" Christi loves visiting the incredible teachers where she attended preschool just four short years ago. She often asks to visit, yet our schedules typically don't permit it. It finally worked out about ten days ago when we stopped on the way to the hospital for a transfusion and she had a ball! We miss the amazing teachers and staff (seems like family) at BJP and wish them all the very best!

Last night Christi sat on my lap and I went over her schedule for the next two weeks. For the first time, I explained that she would not be permitted to attend the entire last week of fourth grade because she'd be receiving high dose chemo at CHOP. She tried her best not to cry, but soon she couldn't take any more, she buried her face into Buckeye, sitting lovingly in her lap, and then I hugged her while her little body shook and my tears dripped down on her bald little head. I know it was so hard for her to hear this as her class has been planning the foods they'll eat and the games they'll all bring in for their final day together and now she knows she cannot be a part of it. HER last day of fourth grade will be this Friday. She told me, "It's just so hard.” I couldn’t agree more. A mother is to protect and I feel totally helpless and out of control.

Shayne and I hate for her to have this disappointment; yet, we are very grateful for Dr. Maris waving his magic wand and getting her scheduled so soon and at a time when he will come over and see her himself every day and be the one to infuse her stem-cells back in her like he did in January of 2004. Another alternative was to wait about six weeks for BSO/L-PAM until mid-June when he would again be available. He said we could put her on oral VP-16 to try to hold the disease until mid-June. Well, my face must have turned white because he said, "I know what you're thinking and it wouldn't be used for that in this case." (Kids are often sent home on hospice and take VP-16 to try to slow things down a bit and to give parents more time with the child. It does not halt the disease.) Regardless of how hard my talk was with Christi about missing the entire last week of school, she once again amazed me with her compliance and I said I’d email her teacher to see if some special things could be planned for Friday.

This morning we had her blood counts drawn from a vein in her arm early at the hospital before heading to school. While the news wasn’t surprising, it was disappointing – she needed yet another transfusion, ugh! (This will be her sixth life-saving transfusion in the past fifteen days!!) Do blood donors know how much we appreciate them sharing their priceless gift? We do! Christi would be dead without them! Therefore, just as we did before school, we went to the hospital after school for Christi’s platelet transfusion. The transfusion was less than four hours then as Shayla and I went to leave the hospital, I noticed the flat tire on my van. That sweet and amazing husband of mine who stopped by the hospital after work to bring the girls "Taco Bell" sent us home in his warm truck after the long time spent at this hospital while in the cold rain he pumped up the tire enough to get to the store. Now my van is sporting a new tire. The biggest disappointment of the day in my book was the fact that her LDH is again higher and above "normal". It's such a good indicator of the cancer circulating in Christi's body.

Some have asked what tests she has to have done on Thursday. A 24 hour urine catch is required so I'll be traveling with that (Oh, the security folks are going to love me, hee hee!). She'll have to go without eating again as they'll put her under for her bone marrow samples to be extracted from her pelvis. She'll also have a CT of her head. (The children who have died had brain involvement. If Christi does this would make her ineligible for the trial.) She'll also need an ECHO done to measure her heart function.

In preparations, starting today we are no longer allowed to give her any antibodies, Tylenol or Motrin. (Again, this is something the children who died all had in common so they are not permitted two weeks prior the trial and again not permitted during the study either. That's when it could get tricky in my opinion.) She's now with the sniffles so I pray she can shake this on her own and not require any meds. Thankfully, Christi continues to feel very well and she had another fabulous day at school with her friends and her amazing teacher, Mrs. Smith. We pray tomorrow she is again blessed with feeling well!