“There is nothing stronger in the world
We’ve been taking it “gentle” in recent days as Christi’s treatment recovery is far from complete! Thanks to the “gentle” sweethearts for sending Christi cards to CHOP and to CHOP for mailing them to her safely back in
Christi and I were up at
and off to the
We met with Dr. Maris and told him about our time in
Her counts were improved, but still much lower (and higher in some areas) than I desired. Because they weren’t back to normal, she’s scheduled to have blood drawn again at our home hospital on Tuesday to see if things have resolved or not. (Please join us in prayer that her blood counts will have recovered by Tuesday afternoon. Thank you!!)
TUESDAY (Day #7) BLOOD COUNTS:
Elevated numbers included her LDH (measures tumor activity) and her AST and ALT (liver enzymes). Dr. Maris warned me that I shouldn’t be surprised if her LDH was elevated because “there’s a lot going on in her system due to all involved with her treatment last week”. (And high it was, ugh!)
By the grace of God, the heavy rain I was driving all the way home from the
Thursday’s poor road conditions provided us with a two hour delay from school. Because Grandma Nee Nee’s doctor told her that now she has bronchitis (or pneumonia I can’t remember which!) I had arranged for our friend
Friday, I asked her if she wanted to go to school or to spend the day on Mrs. Baldosser’s couch and she said she had a bad headache and thought she should go to Mrs. Baldosser’s so I zipped by Gary and Becky’s before Shayla and I headed to school. I called Becky on my lunch break to see how it was going and learned that she did eat two pieces of toast, but then threw up. Becky brought Christi up to my classroom after school and Christi looked horrible with tears welling up in her eyes as she stood there clutching “Bluie”. Oh, it was agonizing! I drove home and she went straight to bed for the entire evening.
Saturday Shayne arrived home which was a glorious thing! Finally, after two long weeks our family was back together again! Ahhh! Christi was awake long enough to ask to make some food with her Easy Bake Oven and we were happy for two hours to work with her on that “project” while Shayla was with her first grade friends at a little birthday party in town. This weekend has been nice to relax and enjoy being home all together!
So the symptoms we were warned about that could persist for two weeks have definitely done just that! (Today is Day #12. I never really thought it would go on this long, or that she would be so miserable! I really expect her to “bounce right back” and that just hasn’t happened at all!) Christi complains daily of headaches, nausea, hurting eyes and just plain exhaustion. This is a very hard way to spend two weeks per month of your life; however, if it may help we feel that we simply must try. I continue to tell myself that it’s the treatment symptoms and not symptoms of disease yet that is what is always in the back of my mind. Prayers continue to keep me going!! As do all of the sweet “hugs” (hits) on Christi’s website counter.
“Webby” (Eric) has amazed us once again………..while reading his “From the Webmaster” update for January, I see he has been working hard on creating a “blog” for Christi which will allow me to directly post more frequent updates about Christi’s health and to have supporters post comments. I’m certain he’ll let us know when this is working and how we should do this. Thanks, Eric!! And thanks to all of you for checking in! God bless you!
Christi’s Joke: Too tired for joke telling these days!
What’s next? Hopefully, she’ll be back in school tomorrow but I’m not holding my breath. (She’s still sleeping all but about 20 hours per day!!) Blood will be drawn Tuesday afternoon to see if her blood counts have returned to appropriate levels. (Then I’ll be anxious to learn of the LDH level!) Round #2 of the Phase II hu14.18 IL 2 trial will begin at CHOP on February 6th. Our flights are booked and I’ve already started to pack (again). After the treatment and after resting up back at home for about a week, Shayne will fly to Philadelphia with her at the end of February for tests and scans only then will we know if she has had a response to this treatment or not. (It’s going to be one difficult trip for the parents who goes or who stays home, especially if her MIBG scan is worse. I’m already fearful and we’ve decided it best for Shayne to make the trip and I’ll stay back with Shayla.) Because the medicine is so rare, they’re not going to allow her to have a third or fourth round unless it appears to be keeping her stable (or improved). They will not order the medicine until we have the test results at the end of February. With good test results, she’ll return March 6th for a third round of this torture (Oh, I mean “treatment”.)
Christi’s “Funny” (But maybe not so “funny” really!)
Angela’s “Funny”: At the hospital, after taping the “Epinephrine Injection” (a shot) to the wall behind her bed she asked, “Am I getting a shot?” The sweetest nurse (Stephanie “Miss Sweetums”, later turned “Miss Octopus”) explained that it was there “Just in Case”. Christi wanted to know what would be the “Just in Case” that would make them give her that shot. Stephanie explained that if things were shutting down it would give her body a “jump start” to help get her breathing again. It was like an adrenalin boost if needed. (Thankfully, she didn’t need it!) There was much talk about the “Just in Case” shot. I proceed to tell her that as a teacher there are always students who just “show up” on the first day of school without being registered so I always have a “Justin Case” desk ready and folders I label with “Justin Case” if only to humor myself! Once she saw the comparison of “Just in Case” and “Justin Case” she thought my preparation acts at school were pretty funny!
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Shayne & Angela Thomas: firstname.lastname@example.org