Journal Entry


Thursday morning, September 1, 2005

"I just want to see her walk down the hall and come into my classroom.  If she’s with me, I’ll know everything is going to be okay.

(Caroline Smith, February 2003)


Christi & Mrs. Smith – First Day of 4th Grade

I never before dared to really allow myself to dream that somehow, against all odds, Christi would make it to 4th grade.  Well, that dream came true last week!  And while not in the best of condition, on the inside, I’m still soaking in and drinking up every glorious minute that she is continuing on in that classroom with a most talented teacher and the dearest of friends.  Diagnosed about ten days after beginning school – a hospitalized, ghostly looking five year old with tubes coming out of her arms and moans of pain coming out of her mouth, I never thought I’d witness her attendance in the 4th grade.  Although I’ll admit I many times I literally dropped to my knees beside her hospital bed in prayer, I didn’t believe she’d really be alive to experience this.  While in the midst of tough treatment days in NYC, sweet Caroline (now Christi’s 4th grade teacher) emailed me the above statement in one of her daily emails.  And knowing that Caroline tends to think that all of her students are really “her children” I knew that if this happened, it really would be okay.  She’d be in the best of hands.  (Of course I thought that if she made it to the 4th grade then she’d be cured, but hey – I’ll take “still being here at all” at this point of the game!  This is a lethal form of cancer she’s fighting.) Getting back to school and the typical structure and routine has been a great thing for all three of us.  Shayla is loving her fabulous “gem of a teacher” and my students are absolutely, incredibly awesome again this year too!  School has been a fabulous distraction for me.  We’ve been richly blessed to be surrounded by such wonderful people.

I’m sorry that I have not been responding to emails that have I been so kindly receiving.  While I am most appreciative, most every day I’ve been distraught and sad and just haven’t been up to responding.  Throughout this entire journey, I’ve never really been this low – until now.  Please know how much your thoughtfulness and kindness of emailing has been appreciated.  They’ve all been read with gratitude.  Thank you!

Recently, I obtained Christi’s medical records from three years ago - the records from our local hospital where her tumor was eventually discovered.  While I wanted to get my hands on them earlier, I didn’t want to at the same time; I knew that would be reliving the horror – and it was.  “Patient arrives in pain in mother’s arms”  “Mother reported off and on fever for five days”  “Only ate two crackers and one ice cream sandwich all weekend”  “Patient has difficulty breathing” “Admitted in poor condition” etc. I didn’t remember driving to the hospital that late on that frightening Sunday night; I thought it was much earlier.  Little did we know that was only the beginning of the real hell we’ve lived since September of 2002.  Reading the big packet of all that took place is indescribable.  Regardless, we needed some information regarding her LDH level at initial diagnosis since CHOP didn’t have those records and that was the very push I needed to obtain those records.  Strangely enough, I still innocently remember (and long for) our perfect little life – life before cancer.  Life before the rug was pulled out from under us.

The “sleeping in the horse barn” experience was one which will forever be treasured.  (Actually, I hope we go back this fall!!) In fact, while they don’t typically rent out the barn unless people are desperate (“like Mr. Thomas was when he called needing a room,” the owner informed us) it was a huge hit with us all!  Imagine dogs sleeping on the floor beside you and Christi couldn’t have been more pleased with the gray cat sleeping on her bed – two baby cows, little goats and chickens literally steps outside your door; gathering eggs and doing chores - the girls thought they had a little slice of heaven.  It turned out that the owner/innkeeper was a fellow National Board Certified teacher so we had a lot to chat about too!!  It was a terrific experience!

The horseback trail riding through the woods was especially noteworthy and joyous.  Well, safely back in the barn after getting caught in the midst of a terrible storm, it then again became joyous!  We were absolutely drenched, but also joyous!  As the lightening surrounded us, our 7 horses kept picking up the pace.  The barn doors were wide open and just down the road; it was frightening actually.  I kept praying, “God if you’re going to take her, take her out now while she’s doing something she loves and with something that should be swift and fast.”  Yet the lightening didn’t strike her down.  Yes, a most gruesome thing to pray for I know, but yet I did.  It was a splendid treat that Aunt Marty and Uncle Jeff joined us there for the cherished weekend too as it wasn’t too far from their home; they are so special.  Thanks, Kings!!!

Christi really struggled with the first round of chemo – all ten days of it.  Drinking the one concoction was nearly unbearable at times; yet, she’s so strong she did it!  How she kept from vomiting it back up was amazing to me as I’d witness her standing outside the bathroom turning green and her eye area turning pink.  Challenging, but praise Him she never really threw up – although she came close.  We learned that this chemo would keep adults in bed they’d be so sick – so we were happy that she has continued to march on while not skipping a beat for the most part although her tummy was “tender” many days.

Last Friday I had her blood work done at the hospital after school, the CBC came back fine much to our delight.  We know the possibility of low blood counts and all of the hassle/horror that goes with that.  Dr. Maris didn’t know which way her counts were going to go with this new attempt.  Unfortunately, the LDH was elevated even more so that sent me off in a big tizzy.  Here is my email of fear and panic to our NB support group:

With good news I share that Christi had an enjoyable week of 4th grade with a dear friend and fabulous teacher, who incidentally was also Shayne's 4th grade teacher.  With bad news I report that her LDH has again risen rapidly in just four weeks.  That tells me that this new Phase I (irino, Temozolide, cebrex) isn't halting this relapse at all.  Isn't chemo supposed to work right away? (She's on day 7 of 10 of her first cycle.)

She is having a very difficult time drinking the irino - many tears, much begging and pleading are required.  Who ever said I was against bribery?  (smile)  I think the little 8 year old thinks Dr. Maris has a big selection of options to pick from as she's stated many times, "When we go back to Philadelphia , tell them how bad this is," referring to drinking the chemo. 

Today after school she was nauseous and just wanted to go home and rest on the sofa - not at all what I'm used to witnessing.  She couldn't walk around Wal-Mart where I had to run errands as Shayne was with his Mom so I had to push her in a cart.  (Truly I didn’t think she was even going to be able to make it into the store from the parking lot she was so tired/weak.)  She thinks she's starting back to ballet and also picking up a jazz class in two weeks; I don't think so – yet I do hope and pray that is the case.

This week I had her black/white silhouette cut out of black paper.  (It's lovely.)  Last night I captured her thumbprint which I hope to have made into a necklace like Angel Cierra's sweet Mom Shannen did.  (I did Shayla’s too so maybe I could have both of the girls’ thumbprints – one on each side of the necklace if it comes to that.)  All week I've been capturing little video segments as many of you sweet Angel parents have advised us to do.  Tomorrow we'll put her handprints into a keepsake frame and we will have family pictures taken next week before all of her hair falls out again – which Dr. Maris said will likely happen after a few rounds of this latest clinical trial.  (And we definitely know it will with the other “big guns” we most likely will be attempting down the road.)

Angel parents:  What else do I need to do NOW while she's still here and I'm still functioning – although I’ve learned the real pain begins months after the death?  I've started writing her memorial service program book and thinking of things to display for the visitation.  Shayne and I are narrowing down the arrangements – arrangements no parent should ever have to make as you know.  Now, in the middle of the night, I'm wide awake trying to write a lovely obituary for when/if the time comes, it's done in a way that is fitting for our little, cherished princess.  Any thoughts and suggestions would be most appreciated!!  Just email me. 

Thanks,
Angela

Well, I’ve calmed down a little bit since I sent that desperate post.  Shayne’s email to a dear NB friend was a bit more comical and it went like this:

Thank you my friend.  I appreciate your attentiveness to our plight. 

A colleague asked me how I was doing.  He likened our situation to being in the fourth quarter of a football game with 2 minutes to go - we're tired and the whole game is now at stake.  I was just thinking about that and decided that the analogy falls apart because we don't know if it is a 4 quarter game or an eight or sixteen quarter game....makes a difference what play you call right?  I am not going to throw the "hail Mary pass" if I have another 4 quarters to play!!  This may be why sports analogies are so popular...they are simple and can easily convey the message.

Anyways, thanks for calling in a few plays from the sidelines.  I'll be sure to dump Gatorade on you when we win.

Shayne

Yesterday, August 31st, I again had her blood drawn out of her arm at the hospital after school.  Much to our delight, the blood counts were again fabulous at:  11.6 Hgb, 3.8 white, 204 platelets with an ANC of 1800.  Now the blood counts don’t tell about the cancer, but what I consider to be the biggest blessing of all was that her LDH (measures tumor activity / what was even higher on Friday) was down to 245 (100-190 is normal).  Sadly, it’s still WELL ABOVE normal, but telling my mind that “perhaps” this chemo is knocking down the disease a bit.  (Truly my hope and prayer).  So now, Thursday, I feel better than I did just six days ago.  Oh, the roller coaster ride of a beast called cancer.

Sadly, I share in my journal this morning that our Internet support group friends from the UK lost their beautiful boy Jamie to this evil beast just yesterday.  No, I shouldn’t say “lost” - you lose your keys, your sunglasses and sometimes your mind, but you don’t “lose” a child.  (Always thinking of you, sweet Widmans!!!)  Anyway, their beloved child was dx. two years ago was robbed from them yesterday and gained his wings.  Fly, sweet Jamie, fly!  His wonderful Mother brought so many together throughout his battle by listing many of our NB children on his website allowing us to check on each others’ kids on just one simple website.  Never have I seen the NB listserv so full of sweet posts as when Kelly reported his death.  This is a very special family!  Rest in peace, sweet Beebo! 

Our hearts and prayers go out to all of the victims of Hurricane Katrina.  When I forgot to mention them in prayer one night, Christi was certain to remind me to pray for them too.  We've emailed some of Christi's sweet prayer warriors from that area and have had emails returned.  What a horrible, devastating crisis.

Thanks for checking in on Christi,
The Thomas team Mom, Angela

Week’s Highlights:  Science class in school, riding horses with wonderful Kelsey on her beautiful horse, Going to Mrs. Depinets after school, Trooper and sweet State Representative Wagner arriving via bicycle to play with Christi last night!

Christi Funny:  To get her chemo in we’ve had to have her up and starting in on the meds at 6:15 AM .  (Soon to be 5:45 AM , but we’ll wait until we have to for that one now.  Shhhh!  Don’t tell her!)  She’s into setting her alarm clock - a cute cat she painted herself from a neat craft kit.  One day I noticed she wasn’t up for school yet.  I thought she forgot to set it so I turned it on to wake her up and I quickly backed out of the room so she’d think she did it all by herself.  Soon I heard, “Mom, there it goes again!  It went off in the middle of the night so I shut it off.”  So, funny!!  I’m certain many feel that way when their alarm clocks go off!  Morning can feel like the middle of the night.

Weird:  Her urine markers from a couple weeks ago at CHOP came back once again in the normal range – definitely telling us what we’ve known since diagnosis; they are not a good indication of what’s really going on with her cancer.

Christi’s Joke:  

Nurse:  “Doctor, there is an invisible man in the waiting room.”  Doctor:  “Tell him I can’t see him.”

What’s Next?  The girls are bringing school friends home after school tomorrow.  Then on Saturday, we’re off to spend Labor Day weekend camping with the Bowerman’s and going to a water park with the Leis family on Sunday. At this time she will again be back on the chemo after having enjoyed a wonderful week off!  I’m not looking forward to her nausea starting back in and I hope her energy level remains high; it’s so hard to see her ill.

Pending no pain or sudden increase in LDH level, Shayne and Christi will return to CHOP in late September.  While they hope to return home in about 56 hours (But who’s counting – hee hee –JUST MOM!!!!!!!) I will have them packed up for a lengthy stay in case need be.  If her disease is worse that is the plan at this time.  CHOP has some options for her, but they will require her to be in the city for some time.  Dr. Maris has told us that this chemo will not hold her, yet we hope it will for a few more rounds at least.  Shayne and I have determined that “quality of life” is very important to us at this time.  If we can remain at home instead of being in a hospital far away with no better results or chances, we will stay at home and be “normal” as long as possible.

Christi Thomas Honorary Blood Drive at Hospice:  Friday, October 21st 9:00 - 3:00 .  Please join in by giving the gift of life!  Christi is hoping to be on hand to help squeamish donors, but that will depend on “the beast” and God’s will.

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