Journal Entry

Sunday, December 25, 2005

“And she brought forth her firstborn son, and wrapped him in swaddling clothes and laid him in a manger; because there was no room for them in the inn."  

(Luke 2:7)

A last minute chat with Santa:  Shayla (6) and Christi (8)

Merry CHRISTmas to you and yours from ‘Christi Claus’ and the rest of the Thomas team!!  We send you all the best of wishes including happiness, peace, good health and knowing God’s love!  “For God did not send His son into the world to condemn the world, but to save the world through him.”  (John 3:17) 

I’m relaxed to report that I do believe it was just a bad case of the flu which brought Christi down most of last week; now she is fine!!  I had great fear and panic of “rapid disease progression” due to her headaches and vomiting, but I think we are ‘okay’.  (I also don’t know how much the ‘double whammy’ of chemo and radiation at the same time impacted the situation.)  I do expect this week’s test results to show some progression, but hopefully not too much.  I’ll update when we fly home from Philadelphia and when we have the complete test results.  Thank you for your continued prayers.

Radiation ended on Friday and it was a challenging week.  My deepest thanks to the sweet and wonderful employees at the Radiation Center for taking such fabulous care of Christi.  She was so sick most of the week and they showed the utmost love and concern; they were all amazing, fabulous professionals!  On Thursday afternoon, her third day of heavy vomiting and headaches they tried to get a CBC to check her blood counts.  Unfortunately, she was so dehydrated that they weren’t able to hit a vein and she didn’t want yet another needle stick so we headed over to the hospital to have them draw it through her port.  (And because I was there earlier with Shayla for her surgery I thought I should get a multi-day discount or something, hee hee!)  Seriously, Christi’s blood counts came back fine – for the most part, and then Christi started coming around and asked to watch cartoons.  Soon she wondered if Dad could deliver Taco Bell after work – so we called him and he did!  (Just the way to start back to solid foods after four days of being sick, right?!  Hee hee!)  She needs to get some weight back on her – Taco Bell should do that!

Blood counts:

  • LDH (measures tumor activity, normal 100-190) “223” (down from 242 on Dec. 7th, whew!  Praise Him!  I wish it would be normal, but………at this stage of the game I’m just thankful it’s not any higher!)
  • Hgb. 13.3 (high, but most likely due to the dehydration)
  • White 2.7 (low)
  • ANC 1800 (fine)

Platelets 103 (woah!  Down a great deal from 158 weeks ago, normal 150-450.)  Shayne had been noting that her platelets were falling with each round of chemo.  They were 203 when this latest ‘cocktail’ was started in August.  Clinical trials typically have a platelet requirement of 75 to 100 so with this low number we couldn’t be any happier to be ending the chemo and starting the new trial very soon.  We’ve known with a lot of treatment, she may not qualify for any future trials due to blood counts being too low.  This platelet count was a scary number to see!)

Thankfully, due to Grandma Nee Nee’s broken collarbone, she was again willing to stay back with Christi on Thursday morning so that I didn’t have to take her out in the cold.  Shayla climbed into our bed in the middle of the night Wednesday and announced, “Nee Nee’s here!”  Christi was so ill and I had to have Shayla at the hospital at 6:30AM for her surgery.  It went fine.  My gut feeling was right; her left ear drum did indeed rupture.  Dr. Nielsen put a “T” tube in her left ear and another (3rd to be exact) regular tube in her right ear.  She got along just fine – of course with my best friend, Becky, there to assist us how could we not?!  I hope this is the end to all of Shayla’s ear aches.  The “T” tube should stay in 2-3 years. 

Shayla asked to have her hair cut chin length “like Kit’s” so our own little ‘American Girl doll’ now looks like her own American Girl doll “Kit”.  She also lost her other front tooth so now she can really sing “All I want for Christmas is my two front teeth.”  She’s beautiful!

We went to bed Saturday night after tossing carrots out on the deck for the reindeer and after setting out last minute cookies we made for Santa when we realized we didn’t have any.  The girls were so excited about Santa coming and Shayne kept joking about the tooth fairy and Santa crashing into each other trying to get to our house, but the girls didn’t think it was as funny as we did!  We tracked Santa via the NORAD website and once we followed Santa’s flight into Canada Christi was insistent that we go to bed, so we did.  (Awesome website!) 

“For to us a child is born to us a son is given, and the government will be on his shoulders.  And he will be called Wonderful Counselor, Mighty God, Everlasting Father, Prince of Peace.”  (Isa 9:6)  Christmas morning found Christi awake just after 6 AM .  We waited for Shayla to wake up at 7:00 and then they started unwrapping their lovely gifts which they played with all day and which produced great squeals of delight we captured on video!!  (American girl slippers!  Soapies!  PJs! American Girl goodies! A Pokemon game! Cranium – a great family board game which Shayne and I hope to win some time!  Those two girls are the best team; they are really in sync with each other and keep squashing the Mom & Dad team!  DVDs!  A Gorilla Hot Wheel thingy! The most awesome horse quilt and horse goodies!  Scrapbook items!  Wow!)   

I’d like to say a very special thank you to those kind people who sent a special gift.  Please accept our deepest thanks and gratitude!  Christi just finished her sixth round of the oral irino/temador chemo combo.  Out of ALL of the treatments she’s had over the past three and one forth years, that was the most expensive treatment yet – thousands of dollars per round, and since we don’t know what 2006 will bring, it was very sweet to have some extra presents under the Christmas tree!   “The shepherds praised and glorified God for all they had heard and seen.”  (Luke 2:15-20)   The girls had a fabulous Christmas; thank you for making it so bright!

A sweet Christmas letter written to us from Shayla at school.  (Thank you, dear Mrs. Rombach!)

Dear Mom and Dad,

Merry Christmas.  Thank you for helping me with my homework.  I hope we go sledding this week.  I like our Christmas tree.  Christmas is my favorite day because of you.


Christi made me a Christmas card/poem up in her bedroom one day and she gave it to me this morning – after I unwrapped her from a big box at 6:30 AM !!

Dear Mom, (Made with fancy letters she learned how to make from her American Girl Magazine) 

Some call you Mrs. Thomas, but you’re just mom to me.

You try to solve every problem you see.

You help me with my homework.

You help me bake a cake.

You help me with a craft.

You’re special so I made this poem for you. 

I hope you have enjoyed it, because now it is through.

Love, Christi

So...........we had an old fashioned Christmas at our house this year:  the tree from China , lights from Mexico , ornaments from Thailand and the idea - from Bethlehem !!   (smile)   Seriously, may God grant you the light of Christmas, which is faith; the warmth of Christmas, which is love; the radiance of Christmas, which is purity; the righteousness of Christmas, which is justice; the belief of Christmas, which is truth; the all of Christmas, which is Christ. May God richly bless each and every one of you!  Merry Christmas!!  And to our many wonderful Jewish friends we’ve met and become friends with since Christi’s diagnosis we say Happy Hanukkah!  Thank you for richly blessing us with your love and friendship!!  We love and treasure you!!

Regarding the new trial to begin in January:  I’m not foolish enough to get my hopes up too high, yet hope somehow gets me through each day.   I know it’s not a cure and it won’t be the end of her treatments by any means, but I hope and pray that it will destroy some of the cancer cells and will lengthen her fight against this evil beast.  In theory, the antibody therapies not only attack and kill neuroblastoma cells, but the treatments should train her immune system to recognize and attack the neuroblastoma cells long after treatment has stopped. The timing is perfect as I believe we have exhausted any improvement on the irino and I believe it’s a matter of time until it stops “holding” her steady.  Furthermore, I see her platelet count has dropped dramatically indicating that her body can’t take much more.  The injection will be daily through her port and it should last four hours.  The antibody works with the immune system as opposed to the chemotherapy that destroys it. Unfortunately it is not efficient enough to be a first line treatment for this cancer, but studies like the one we will enroll in may change this at a point of time!  (Go, little pioneer – go Christi!)  The antibody treatments however work great (in test tubes) on a cancer that has been stunned with chemotherapy which is indeed Christi's case.

This is my understanding; I will sign the consent forms this week and will learn more while I’m at CHOP:  the antibody treatments should generate pain as the receptors of the protein in the body are indeed around the cancer cells but also on the surface of the nerves. The HU14.18-IL2 is the 3rd generation of antibodies after the original mouse antibody and the chimeric 14.18.  (The Hu means Humanized as opposed to the mouse antibodies she received while at MSKCC in NYC), so the DNA of the protein is mostly human, only the anti-GD2 part of the mouse antibody is kept to maintain the antibody effect. Before the antibody was injected together with an immune system booster like GMCSF or Interleukin (IL) so that the effect of the antibody can be multiplied. With the HU14.18-IL2 the Interleuking is fused into the antibody protein. (That is supposed to be much more efficient than the separate injections.)  This product has been developed for the Melanoma adult cancer that is much more important in terms of quantity of patients. The Melanoma has the same Gd2 tracer as the Neuroblastoma (that is our luck!).  If there isn’t enough interest in pursuing cures for pediatric cancers because they are so rare, we must rely upon following the coat tails of adult cancers and hope and pray something developed for adults will work for our kids too – aren’t they worth it?  They have a lot of years left to live!!

There is a neuroblastoma relapsed survivor that I’ve followed via a website for a few years.  This child did the study Christi will begin when this child was eight (sound familiar?) and when it was a Phase I (dose setting) trial.  After four rounds it was almost stopped because it didn’t appear to do anything to reduce the neuroblastoma.  Then the child started on Fenritinide (another study on our list, not high, but on it and which may be pursued soon) and soon switched back to two more cycles of this hu14.18-IL2 trial after problems with the Fenritinide.  After six rounds the child was declared NED and has remained so for the past three years!!  It is stories like this that helps get me through!  Recently, the sweet father wrote me:  As per the treatment itself, you have to expect, very high fever, shaking, vomiting and muscle pain. The effects start pretty quickly after injection and fade away after it. You know what pain is as you did the mouse anti-body in NYC. Technically, I think this one is much more efficient.  If all goes well this week, Christi and I will fly back to Philadelphia on Sunday, January 8th.

With peace and gratitude,

Christi's Joke:  What does Santa say in the garden?  (Ho!  Ho!  Ho!!!)

What's Next:  In less than 48 hours Christi and I will be flying to Philadelphia .  Tickets were $571 out of Toledo, $378 out of Detroit, $363 out of Cleveland and a mere (hee hee) $262 per ticket out of Columbus - needless to say, we're flying from Columbus and saving hundreds!  (smile)  Reservations have been made for us to spend two nights at the Ronald House, but that will depend upon availability.  We have a very tight schedule (See below).  It’s a lot to get through in just two days, but hopefully all will go as planned and we shall return home late Thursday evening.  I don’t know of any other hospital that could pull of so much testing in so few days.  I respect CHOP for listening to my pleas of getting us back home as soon as possible!  (Grandma Nee Nee to the rescue –again!)  Shayla will be spending her days getting lots of love and attention while I'm gone.  (Thanks, dear Joan!)  I’ll update when I receive the results and once new wheels are about to be set into motion.  I expect this to be Jan. 1st.  Thank you, dear friends!

Christi's Schedule from the wonderful people at CHOP:  (Prayers always appreciated!) 

Tuesday 12/27/05

  • Start SSKI 3 drops (0.15ml) by mouth daily x 5 days.
  • Take oral CT contrast at bedtime then nothing to eat or drink until after CT Wed. (This will be sent to your home by FedEx.)
  • Fly to Philadelphia .

Wednesday 12/28/05

  • 08:45 Onco clinic for port access, CBC, panel, blood and urine tests. Pick up Echo request slip.
  • 09:00   Dr. Mosse - PE, consent meeting to begin new study
  • 12:45 arrival Radiology Registration, 3 Main , for 1330 CT chest, abdomen and pelvis with IV and oral contrast. CXR – 2 views following CT.
  • 1400   arrival Radiology Registration, 3 Main , for MIBG injection

Thursday 12/29/05

  • 0900   Onco clinic for GA for bilateral bone marrows
  • 1330   arrival Radiology Registration, 3 Main , for MIBG scan at 1400
  • 15:00   Heart Station Echo/EKG
  • Fly home.

Monday 1/9/06

Admit / Day 1 antibody, expect to be hospitalized until the weekend.  Stay at Ronald.  Exam, CBC on 1/18/05 .

Again this year so many loved ones have left us here on earth and have returned to the kingdom of God .  In honor of those very special loved ones, I post the following poems:

Christmas in Heaven by Wanda Bencke

I see the countless Christmas trees around the world below with tiny lights like heaven's stars reflecting on the snow.

The sight is so spectacular please wipe away that tear for I am spending Christmas with Jesus Christ this year.

I hear the many Christmas songs that people hold so dear but the sounds of music can't compare with the Christmas choir up here.

I have no words to tell you of the joy their voices bring for it is beyond description to hear the angels sing.

I know how much you miss me, I see the pain inside your heart for I am spending Christmas with Jesus Christ this year.

I can't tell you of the splendor or the peace here in this place Can you just imagine Christmas with our Savior face to face?

I'll ask him to lift your spirit as I tell you of your love so then pray for one another as you lift your eyes above.

Please let your hearts be joyful and let your spirit sing for I am spending Christmas in heaven and I'm walking with the King.

First Christmas in Heaven
Author: unknown

I am having my first Christmas in Heaven
A glorious, wonderful day!
I am standing with saints of all ages,
Who found Christ, the truth and the way

I am singing with the heavenly choir
I- who so loved to sing!
And, oh what celestial music
We bring to our Savior and King

I am singing the glad song of redemption,
How Jesus to Bethlehem came,
And why they called His name Jesus,
That all may be saved through His Name!

Oh, loved one, I wish you could be here!
No Christmas on earth can compare,
With all of the rapture in glory,
I witness in Heaven so fair!

You know how I always loved Christmas,
It seemed such a wonderful day,
With all of my loved ones around me,
We were so happy in every way.

Yes, now I can see why I loved it,
And, oh what a joy it will be,
When all of my loved ones are with me,
To share all the glories I see!

So, dear ones on earth, I send greetings,
Look up! Til dawning appears,
And, oh what a Christmas awaits us,
Beyond all our partings and tears!

Christmas In Heaven
© Written December 22, 2003 by Kris Smith

We've shared our hearts, full of Holiday Cheer
and shopped for presents for loved ones this year
The house is dressed up with garland and lights
That sparkle and shine through the Holiday nights.

But even with all of this Holiday bliss
There's someone we lost that we terribly miss
And as this Christmas Day draws near
We wish with all of our hearts she was here.

She's living her life way up past the stars
Somewhere past Jupiter, Saturn and Mars
She's spending her Christmas in Heaven, you see
And last night as I slept, a dream came to me.

She was standing before me, happy and well
She said to me "I have something to tell…
Heaven's more wondrous than you would believe
It's the greatest of gifts I could ever receive.

I'd like for you all to remember the good…
You know that I'd be there if only I could.
So don't feel so bad that I'm not there
There are so many memories you can share.

As you gather together, I'm sure you'll find
The gifts deep within you that I left behind.
Each one is unique and wrapped brightly in love
They shine from your hearts as I shine from above."

A special stocking now hangs from our tree
Filled with our own special memories
And since we can't send her an earthly gift
We're asking God: "Please give her a kiss."