Journal Entry

Monday, March 21, 2005

“Don’t count the days, make the days count.”

Muhammad Ali

Again with tremendous gratitude and relief I report that things continue to go well this month - very, very well!!  I’m absolutely amazed - the rhythm of life is still marching steadily along for us. And the familiar cadence of daily activities is certainly a welcomed comfort. School, work, lots of activities … all of which have been tremendous blessings for us – keep us going day after day.   And we’re always trying to make these wonderful days count!  To see Christi so active and so full of life is just remarkable to me.  No one would ever imagine she’s still in treatment and she’s still on chemotherapy like she is – in the middle of her 21st round of chemo to be exact!  We are reminded of His goodness EVERY day. After all she has been through, and with all she is still going through – how can one not believe in miracles?!  She is one!

Speaking of miracles, Chris Becker earned his Angel wings after fighting neuroblastoma for over six years!  (Keep in mind most children die within the first year!  Chris was just amazing in his battle!  Forever a courageous hero to us he will be!!) Our hearts and prayers are with the “Becker Bunch” (as we call them) entering this new part of life without their precious son who was so lovingly adored by wonderful, wonderful parents!  They did absolutely everything in their power to assist their beloved young man – taking him to the world’s best treatment centers for NBIV and allowing his participating in so many clinical trails.  May they never look back and think that there was anything else they could have done, there wasn’t!  God needed him more.  Chris’s website is in Christi’s Clubhouse if you’d like to leave the family a message of condolence.  They are fabulous folks now living with the most horrendous pain.

We all four were able to experience the flu despite the fact that we had flu shots.  I missed one day of work staying home caring for Christi and later one day for myself when I never left our bedroom.  Unfortunately, we all lingered with headaches, sore throats and colds for quite some time; however, we know that’s all normal / common and we couldn’t be more thrilled about normal and common!  By now we’re all in great shape and spring couldn’t be more welcomed after this long, cold Ohio winter season we experienced this year!!  Let the sunshine in!  Bring it on!

We have been busy with lots of activities, but I’m not sure any are overly noteworthy so I’ll move right into the medical news:  Christi’s sore right ankle from last fall again became an issue causing her a lot of pain and having her not be able to walk (or more importantly not be able to play kickball at recess with the other 3rd grade girls) without a limp / hobble.  You could actually see where her “plantar facia” was inflamed on the right foot.  Her local doctor referred her for physical therapy – three times per week for three weeks which she thoroughly enjoyed (Imagine that!) even though it was quite a hassle to get her to all of those appointments after school, but somehow we did!   So the little ballerina & karate girl has been working on her feet without good foot support a bit too much; I’ll take it!  THANK YOU, Lord!  Again, I was so pleased to have this minor problem that can easily be dealt with.  I think I smiled nonstop during every appointment - unlike my time spent in the Oncology Departments without much to smile about.

Her mediport, inserted inside her chest, was accessed at the hospital with the wonderful folks at outpatient in Tiffin.  She met with her Toledo Oncologist and received a good report.  Recently her blood counts were all “nearly normal” at:  10.8 hgb, 4.5 white, 171 platelets, with an ANC of 2,500.  Her LDH (measuring tumor activity) was normal (praise Him!) at 178 and her urine markers were also normal at 5.6 VMA and 6.1 HVA.  She’s up to 63 ½ pounds and stands 51.25 inches tall.  Amazing it is how well she’s grown!  Shayne and I were just commenting to each other that she seemed big when she was first diagnosed with cancer 2 ½ years ago, but now we look at those pictures and realize how teeny-tiny the little 43 pound 5 year old was.  You’ve come a long way, baby!  (hee hee)

I continue to be thankful that Christi is still alive; yet, I also continue to ponder about all of the effects she will endure due to having participated in so many different, experimental treatments – all with unknown side effects.  We know Christi is far from a long term survivor; however, we recently read a report published by the great folks at MSKCC in NYC who researched and studied long term neuroblastoma survivors (They actually consider something like 3 years a long term survivor because survivors and neuroblastoma stage four are so rare and so new.)  Anyway, 95% of the NB survivors studied showed late term side effects from their treatment.  Yes, depressing news; however, I’d gladly take the side effects and have my daughter still here on earth! 

Despite all Christi has been through, she really only has fond memories of our time spent in New York City, as does Shayla - who reminds us quite often that we left her and went to NYC with Christi.  She was only three, but yes it must have been traumatic!  I seem to remember many of our “darkest days” spent there; however, I too have wonderful memories as well – especially of the kind people we met!  It’s hard to believe that we left nearly two years ago and have never returned.  Well, we’ve promised Christi a trip to New York City for this summer and she has quite a list of things (and people) she wants to see again.  Of course seeing her wonderful hospital teacher Anne Marie, her incredible nurse Gail (which Christi thinks she may be taller than now, smile.) playing at the Ronald McDonald House and going to the Pokemon Center are currently on the top of Christi’s growing list!  Let me tell you – Shayne and I are really excited about going back too we hope we will be able to catch up with a lot of people and check out the new MSKCC pediatric center.  Of course, all of this will be contingent upon Christi’s April 2005 test results.

“Memories of March”

CHRISTI & SHAYLA:  I believe that they would say their best “Memories of March” would include:  

*when our whole family stayed overnight at Aunt Marty and Uncle Jeff’s.

*when Grandma Donna babysat for a few hours while Shayne and I attended a banquet. 

*when Grandma Nee Nee overnighted.

*when Christi performed the Stations of the Cross at church with her CCD class and her wonderful CCD teachers’ assistance.

*when Christi performed at her first piano festival up on the big stage with a big piano at Heidelberg College

*and spending a fabulous weekend in Columbus with our awesome COSI friends – Traci & Jenn.

SHAYNE:  This most wonderful husband participated in the Arnold Swartzenegger Classic in Columbus competing in the “Pump & Run” contest where he lifted a bunch of weight and ran a long time around Columbus .  (How about that for specifics?!! Hee hee) Seriously, I believe there were 500 entrants in the “Pump and Run” and he finished 185th so I was incredibly proud of what he called, “respectable” when anyone asked him how he did.  Gooooooo, Shayne!  Next, he’s racing with “Webby” (The Christi webmaster) in a duathalon in May.  We’re looking forward to a visit with the wonderful Cooks – and their two Golden Retrievers!  Look out, Buttercup (Christi’s cat!)  WARNING!!  WARNING!!  Hide, kitty!

ANGELA:  Professionally, I was asked to serve as a “Reviewer of Manuscripts” to help determine which articles make it into the “Ohio Journal” – a magazine for English and Language Arts teachers so I’ve read some really interesting papers other LA teachers have written.  I also signed a contract with “The Education Center” in North Carolina to work as a free-lance contributor.  After they contacted me and I went through their interview process, they purchased some of my teaching submissions and soon they will be published in a magazine for teachers.  Periodically, they will send me assignments and I’ll have a few weeks to submit my teaching ideas back to them.  They also called recently and asked if I’d work on a new book for them which I agreed to do and my first assignment for their new endeavor is due May 1st.  My Ohio State Literature class (which was TREMENDOUS) ended and next week I shall start another class – with the same awesome Professor I had once before so I’m certain I’ll be learning a lot more about teaching from her this quarter in Columbus!

Christi remains pain and symptom free so this March 2005 journal entry still finds me lighthearted and filled with hope and peace; however, as the early/mid-April scans draw near I am certain my stress and tension levels will continue to rise.  Knowing what’s ahead has an uncanny ability to bring it all rushing back. I’m trying to keep everything upbeat and humorous so I’m working on a poem entitled “T’was the Night before Scans”. 

Seriously, everything is solely dependent upon what her tests/scans reveal.  Will her cancer be the same – no better, no worse?  If it’s worse, what will our next game plan be and of course we know how good the odds are (or in this case aren’t).  Currently, there is no cure for Christi’s cancer and it is terminal; however, will this ABT keep her disease stable until a true cure is discovered?  The wave of emotions is challenging to deal with at times. It’s not like the intense and extreme peaks and valleys that we experienced so many times during her harsh treatments, but that dull, nagging feeling of the unknown is definitely there - tugging away at our coat tails just to remind us of reality I guess.  When the actual time draws near in about two weeks I will once again be riding in the front car of the “Cancer Roller Coaster” with every little bump or bruise on Christi’s body totally sending me into “Panic land” as I grip the handlebars, clinch my teeth, close my eyes and pray for good news.  I shall update in mid-April when we have received back the entire set of official test and scan reports.  Until then, please accept our deepest gratitude and thanks and remember “no news is good news”.

Thanks to all of “Christi’s Cheerleaders” for checking in and for your continued prayers (and pom pom shaking) for Christi.  We have been richly blessed by your love! We wouldn’t have made it this far without you – the sweet Christi Crew!!

With peace, appreciation and gratitude,
The Thomas team Mom, Angela

Christi’s Joke:  What did the child do when their Mother served the legs of four chickens?  She ate eight, hee hee!

What has 88 keys, but can’t open a door?  (A piano!)

What’s Next?  She shall continue taking her oral experimental chemo (ABT – 751) on a 21 days on / 7 days off schedule.  After completing this 11th round in a couple of weeks, Shayne will drive her back out to Philadelphia for her:  blood, urine, heart, MIBG and most importantly her bone marrow tests while I’ll remain back with Shayla.  (Her bone marrow has not been tested since last October because of having the “24 hour flu” in January.  I’m on pins and needles!)  Everything is contingent upon the test results, but our hope is that she will get through all of her procedures without much difficulty and that she will continue to have stable disease, or better yet LESS CANCER and that she will again return home with three more rounds of ABT which has given her (and all of us) a fabulous quality of life this past year!  We’ve been blessed!

She has a piano recital coming up on a Sunday afternoon in mid-April.  If anyone would like to attend, please email me and I’ll give you the details.  Piano continues to be her passion.  I never once have to ask her to practice and we often realize that there is lovely piano playing going on in the background – what joy!  She just beamed yesterday on the big stage at the grand piano in the Great Hall at Heidelberg College .  I took a little video and I shall see if Eric can soon add it to the top of her home page.

Saturday, June 4, 2005:  3rd ANNUAL CHRISTI THOMAS POKER RUN – with all monies to benefit the “Make a Wish Foundation”.   Thanks to the sweet “Friends of Christi” for again putting this event together.  This year, Shayne and I have asked that all monies go to “Make a Wish of Northwestern Ohio” as we are so appreciative of them sending Christi on her wish trip to Japan in July of 2003 and for all of the great things they do for children who are fighting life-threatening diseases in our area of the state.  If you have a motorcycle, please mark your calendar for June 4th.  I’ll share more details as soon as they are available.  We hope you can come on out and join us for a fun filled day and night for a good cause – the Make a Wish foundation. 

Click for larger image.Friday, June 10th at the Old Fort Bank – Westgate Office (across from McDonalds & beside Tiffin ’s new Taco Bell) “ALEX & CHRISTI’S LEMONADE STAND” – raising $$ for pediatric cancer research one cup at a time.  (11:00 AM to 3:00 PM )  We hope you can stop by and let Christi pour you a glass of ice cold lemonade in honor of her Philadelphia friend Alex Scott and her dream of finding a cure for cancer.

CHRISTI’S TREATMENT HISTORY:  After experiencing back pain off and on from April of 2002 until September of 2002, Christi was finally diagnosed with neuroblastoma on 9/11/02 at age 5.4 years.  She treated at Children’s Columbus per #3891:  surgical biopsy, high dose chemo for four cycles – bone marrow didn’t clear, transferred care to MSKCC in NYC.

MSKCC:  December '02 to August '03 for:  3 rounds chemo (no response), 4 rounds 3F8 monoclonal antibodies/beta glucan (tumor progression), surgery to remove the tumor from along her heart and spine by Dr. L. on Grandpa Vince’s birthday July 24, 2003 .

Transferred care to CHOP (Philadelphia)  August 2003 - Current:  3 rounds low dose Irinotecan, (stable or improved condition) two high dose MIBGs treatments (internal radiation) with stem cell rescue Nov. 2003 (no response), 3 rounds 13 cis-retinoic acid (disease progression, April 2004) and currently on her 11th round of ABT-751 - new oral experimental chemo with tests to be conducted in a couple of weeks.  Now age seven and three fourths – anxious to be eight!

Most thankful for: Never putting her through transplant

Biggest treatment regret: Attempting the high dose MIBG

Some would consider her a guinea pig, yet we call her a pioneer - hopefully leading and paving the way to a cure for others yet to even be diagnosed with this horrible beast we know as "cancer".  We have been richly blessed!