Journal Entry

January 11, 2005

"Blessed is the man who perseveres under trial because when he has stood the test he will receive the crown of life that God had promised to those who love him" (James 1:12 )

Dear friends and family,

I’m quite certain that many of you have literally worn out your knees in prayer for Christi; however, if you can find it in you to again lift her up especially this week we would really appreciate it.  Tomorrow she will leave with Shayne to make the long drive out to Philadelphia which typically takes them about ten hours.  For whatever reason it always seems that their driving adventures are cursed with horrible driving conditions, but this time the weather report appears to be fine this time for tomorrow.

The torture and misery she is put through (not to mention the stress it causes the parent in management with her) is heartbreaking.  Watching her go from sweet little Miss Christi hopping up on to the procedure table with everyone raving about how wonderful and brave she is to a child we don’t recognize after she wakes up still with the heavy doses of narcotics required for her bone marrow testing in her body is a nasty scene from Dr. Jeckle and Mr. Hyde.  Watching tears slide down her cheeks as she has to be perfectly still, often in awkward positions on hard tables, makes the parent feel totally helpless.  (Sadly, I do not have enough sick days accumulated yet at work to make the trip so once again Shayne will be accompanying her.)  My headache started in again on Sunday and I imagine it will again continue until they’re home again on the weekend.

We hope that the Ronald McDonald House isn’t so full that they have to get a hotel room.  And of course our biggest fear is not that she won’t wake up from the anesthetic, but the very likely fact that her cancer will have progressed. 

With fear I report that she has complained of pain at the top of her spine / base of her skull and we know how neuroblastoma being a cancer of the central nervous system has often set up shop in the spine area with other children.  This pain started early Thursday morning.  When cuddling with her Friday night at bedtime she asked me to rub her back which she typically does.  When I swiped my hand across the top center of her back she casually said, “That’s where it starts here.  From there on up it hurts.”  Ugh!  Needless to say, I’m totally freaked out and so scared what this may mean.  I try to reassure myself that I’m always on edge as her scans near and I may just be overreacting.  Shayne thinks the bump I was feeling was her vertebra.  And she hasn’t complained of pain since the weekend.   I pray that it is not new cancer!

While we do have a tentative plan prepared in case that is the case, we know the reality of what that all means.  We are no longer foolish enough to believe that she will ever be cured of neuroblastoma; however, we do pray that this ABT – 751 will have continued to hold her cancer stable until a real cure is found through research.  Lord, hear our prayers.  A large and heavy dose of childhood cancer has put a lot into perspective.  We thank you for your prayers, love and support during these very challenging days - as well as over the past 2 ½ years of continuous treatment.  If all goes as planned, Shayne will drive home through the night and arrive home on Saturday morning as Christi travels best that way and it saves the cost of a hotel room along the way too.  (He is amazing!  Again let Angels somehow guide him home, dear Lord.)  We pray that they return home safely and with the next three rounds of ABT – 751 for our little pioneer (or the cutest little guinea pig I’ve ever seen)!   Thank you!

In striving to find things to bring me comfort and to help relieve the anxiety and my headache (most likely due to stress) this week, Child Magazine just published their investigation of Top US Children’s Hospital this week so the fact that they ranked CHOP as the Number One Children’s Hospital in the USA for three years in a row is just what I needed to hear.  (And Hunter’s Mom, Susan, is one of our NB Listserv members – gooooo, Hunter!)

Taking the top spot for the third straight time, The Children's Hospital of Philadelphia (CHOP) boasts one of the largest freestanding pediatric research facilities in the world. Its laboratory space alone is the size of four football fields. Plus, the hospital recently added another 50,000 square feet for studies involving children. The reason for the extra room is simple: "For us, the next cure or, at the very least, advancement in care, can't come soon enough," says Alan Cohen, M.D., physician in chief.

A series of breakthroughs over the last decade has benefited kids with neuroblastoma, a solid tumor of the nervous system. Susan Tuccio's son Hunter was diagnosed with stage 4 (the most severe case) of neuroblastoma in his adrenal gland when he was 22 months old. After learning that CHOP was researching the disease, she asked that Hunter be transferred there. Doctors enrolled him in a study of tandem stem cell transplantation. "The treatment shrank the tumor, then doctors surgically removed it," says Susan. "Hunter recovered beautifully and hasn't suffered a recurrence."

Now 9, Hunter is passionate about sports and other activities. Says Susan: "He likes baseball, fly-fishing, and snow-boarding. He's willing to try just about any activity because he was so sick. Now he wants to live life to the fullest."

As always, with gratitude and appreciation,
The Thomas team Mom

Christi’s Treatment History:  DX 9/11/02 (age 5)  2 big surgeries (other small surgeries to replace ports, etc.)  10 rounds chemo, 8 rounds oral chemo, 4 rounds monoclonal antibodies, 2 rounds high dose internal full body radiation, 3 rounds 13-cis-retonic acid (Now 7 ½ years old and still bravely fighting.)  We’ve been blessed!