Journal Entry


Sunday, January 23, 2006

“There is nothing stronger in the world
than gentleness.” 

-Han Suyin

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 Ohio !!   

Christi and I were up at 4:00 AM and off to the Tampa airport with Grandma Nonee and Paw Paw Joe on Tuesday, the 17th of January.  Christi slept the entire way.  Upon our arrival in Philadelphia , we took a cab.  Typical of Christi, she became carsick in the taxi.  (This always makes the taxi drivers very nervous, but I’m always prepared and she’s really good at it!!  Smile!!) I called CHOP from the cab to let them know we were on our “lay over” and had less than 2 ½ hours to be back to the airport and on the next segment of our flight home to Cleveland .  (I wondered if anyone else was doing anything equally “exciting” on their airport layover!!  Hee hee!)  In the cab, I put the elma (numbing cream) on Christi’s port to give it time to work and upon our arrival they were all ready and waiting for us – really hustling so we’d make our 2nd flight – the important one, the one to get us home!

We met with Dr. Maris and told him about our time in Florida .  Little did I know it would be the only time the entire day that Christi would actually be awake.  Because of the car-sickness incident, Christi wanted to take the train back to the airport instead so we did.  (Thankfully, I had checked our luggage straight through so I only had one bag to lug around with us.) 

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:

  • 5.4 white (fine)
  • 11.4 hemoglobin (low, but fine)
  • 82 platelets (hopefully on their way back up)
  • ANC 1,620 (fine)

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!)

  • LDH 1,472 (normal:  420 – 750)
  • ALT 84 (normal 10-35)
  • AST 61 (normal 15-40)

By the grace of God, the heavy rain I was driving all the way home from the Cleveland airport in turned to ice after our safe arrival home and then with the snow falling on top of it, our school was cancelled on Wednesday.  This proved to be a Godsend as Grandma Nee Nee had doctor’s appointments and wasn’t able to stay home with Christi; I didn’t know what I was going to do.  (Come Wednesday morning, I said prayers of thanksgiving for the snow day.  We were both exhausted.)  I can’t explain how fabulous it was to be back with little Miss Shayla and yet I was sad that Shayne was leaving in a matter of hours for a business trip.  Christi slept all of Wednesday and ate VERY little.

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 Shari to let Christi sleep on her couch all day while Shayla and I went to school.  When it was time to leave I told Christi and she responded, “But I’m going to school.”  I inquired, “How are you going to stay awake?  You haven’t been awake more than three hours per day for over a week?”  She said, “I’ll do it.  I’m going to school.”  When I left her in her classroom at 9:30 AM , I made her promise me that she’d have her teacher call Mrs. Depinet if she felt tired.  Well, Christi being Christi wasn’t about to leave school!  At lunch time I learned that after eating a bit and washing the cafeteria tables (She was the helper for the week – a very treasured 4th grade “job”, I’ve since learned!) she was curled up in a large chair in the back of the room (Doug’s chair!!) dozing off and on.  (Thanks to one of the sweet cafeteria ladies, she even had a blanket!)  Near the end of the school day, I went to check on her and peeping through the windows saw her curled up sleeping.  What a gem of a teacher to allow her to do that. Christi is so happy and feels “normal” at school and Mrs. Smith knows that!

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!

Sincerely,
Angela

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!)
Christi’s classmates asked, “Why does your Mom stop by and look at you?” and she responded, “I don’t know.  Maybe she wants to see if I’m still alive or not.” 

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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