Journal Entry

Sunday, January 29, 2006

Thanks to Eric creating the “blog” for Christi I was able to post nearly daily updates in regards to Christi’s health and events.  (I just wish there would have been “good” news to post.)  Providing strength and support, kind humans left sweet comments on the blog which were comforting to know others were praying for Christi – from some far away places (like my OSU Faculty Advisor, currently at her school (Yeppers, named after HER!) in Gahanna and another post from South Africa!  Simply amazing!)  The most surprising and heartwarming one came from Philadelphia :

“So there I was. Eating an overpriced salad at SaladWorks on Penn's campus, on my lunch break. I look out the window, and I see a woman. I immediately think, "hey, that looks like Angela Thomas." (Given, I only know you and your family through Christi's website.) Then I think, "no. they're at CHOP getting some protein fusion." Did I mention that I obsessively read your website? Then I take a good look at the skipping little girl by this woman's side. Though I never actually met her, I know this is the famous Christi Thomas. I gave a big smile and remember feeling thrilled that Christi and her mom just walked by me during lunch! I literally walked back to work with a smile on my face. Needless to say, I have been nervously waiting for each update, hoping for good news. I was so sad to read this last update. I continuously pray that this is a bump in the road that can be overcome and nothing more. Your family is in my thoughts daily.” 

Wasn’t that so sweet?!!  It was a very emotional week and I do not believe that this coming week will be any different most likely worse!  On Sunday Christi seemed fully recovered from the treatment.  Monday was grand!  Then on it all started falling apart on Tuesday night. 

Tuesday during Christi’s ballet class I received the call from the hospital with Christi’s blood counts.  My heart dropped when I learned her LDH level (The one that measures the tumor activity) had soared to an unbelievable 908 (normal range:  100-190).  That was nearly double what it was at original diagnosis.  When I said, “Oh no.”  I heard back, “Yes, we’ve already called Philadelphia to alert them.”  So I proceed to watch Christi dance for one hour of jazz lessons followed by an hour and 15 minute ballet class.  (Oh, yeah and I snapped 84 digital photos fearing it would be her very last class too.)  She was happy to learn how to “tape her toes” and to stuff her shoes with lamb’s wool and was able to wear her pointe shoes for the final 15 minutes of class.  What a big girl in big girl shoes!  It was precious!

Thursday she was interviewed by a lady who came down from Toledo for her work with the Red Cross.  She will be featured in their upcoming edition of “The Gift” which has a circulation of 50,000.  She was charming.

Later that night my heart really fell and unfortunately, it’s still there.  After school I noticed she kept rubbing the top of her head.  When I asked her about it she said, “Theresa found a bump on my head at school today.”  When I asked her if it hurt she said, “That one doesn’t but the little ones do.”  (Ones??? YIKES!)  I felt them and then called Shayne and said, “I’m sick and you’re about to be.”  (New “lumps” isn’t anything you want to discover when you’re fighting cancer.)  We waited for about 24 hours debating what to do and hoping it’d all just go away.  Unfortunately, her eye – sometimes both, continue to look “funny” – puffy and a bit bruised.  (My NB friends know how NB likes to attack the eyes’ orbits so of course that is a worry.) I believe I’ve sobbed more this past week than I have in the entire 3 and a half years.  I’ve tried to be so strong for so long but I believe the horrendous news caught up with me and is bringing me down.  Tonight we counted four lumps – with the latest one being on the top of her upper forehead – disgusting on such a beautiful girl.  How I hate this beast and pray it doesn’t take her sight away too as it loves the orbits.

When she had to come home from school early (Thanks, Shari for picking her up and giving her love!) due to a headache on Friday I knew that I must let Dr. Maris know.  I also told him about her near daily headaches (off and on) and her blurred vision.  He told me that he’d like to see her, evaluate her and have an MIBG scan done. 

Saturday morning I booked our flights to Philadelphia .  Christi continued to feel very well all weekend (some headaches and sore eyes) so we took advantage of the nice warm Ohio January weather (high 50s) and Christi rode her bike, played hopscotch and jump rope and drew side walk pics – including tracing her little sister Shayla into a tree!! 

Tonight she wanted to go ice skating so a friend was dropped off and we had a great time.  The “Littlest Pet Shop” toys continue to be the girls’ crazy – cutest little animal toy figurines.

Shari , a friend since kindergarten, also happens to be Christi’s religion teacher.  When we were talking Friday after school when I went to her home to pick up Christi she told me that at CCD they were talking about sins and about how suicide is considered a sin.  She said that Christi asked, “Is it wrong for a kid to wish that they die before their parents?”  Christi said that she’s asked God that so that her parents don’t have to go on without each others because we’re happy together.  (Oh, talk about a whammy!  Little does she know how many times we’ve pleaded with God to please take us and spare this precious little amazing eight year old!) 

Thankfully, Shari will be traveling with me on Tuesday and Wednesday.  So that we miss as little of school as possible I will pick her up at 4:30 AM on Tuesday and I plan to return her back home at 11:00 PM on Wednesday.  This will allow Christi & I to be back in school on Thursday – if Christ’s health permits that.  These trips are getting harder and harder and Shari will be tremendous emotional support for me – and really she’s just a big playmate to Christi who when she was 3 or 4 would have us call her “Christi Depinet” because she loved playing with the awesome Depinet family!

With tears,  (And I didn’t have the energy to proofread this so please accept my apologies!)

Angela

Christi’s Joke (Complements of Angel John Taggert’s family – Tamara – thanks for your sweet call today!)  What does a kitty order at McDonald’s?  A Happy Meow!

What’s Next?  Exam with Dr. Maris, blood work, MIBG injection and MIBG scan on Tuesday and Wednesday in Philadelphia .  A possible (new) treatment attempt (yet to be determined) beginning the first week in February.  I have our flights booked for Feb. 6^th when we’re scheduled to return. (Yes, that would be four trips to Philadelphia in just six weeks, but we do not want to ever live with any regrets; we will continue to make our decisions based on love and prayer.)