Journal Entry

Thursday, December 25, 2003

".......Behold, I bring you good tidings of great joy............."

Luke 2:10

Happy Birthday, Jesus Christ our Savior!! "For unto us a child is born. Unto us a son is given." (Isaiah 9:6) MERRY CHRISTMAS!! With thanks to great friends, the Thomas team had a Christmas celebration that was simply unimaginable! Thankfully, we captured on video the squeals of delight that came from Christi and Shayla when they saw the Christmas tree and the gifts that "Santa" left for them. Yahoo! Shayla summed it up best when she said, "We weren't that good!!" There was no need to peer under the tree; there were so many presents. (Thomas Team thanks to some sweet angels in Pennsylvania that we've never even met and to great friends and tremendous neighbors here on earth for the treats and cards! God bless you!) Many times throughout the day I found myself wondering if she'll be here with us next year for Christmas, but when it became overwhelming, I reminded myself that she will always be in my heart no matter what happens this coming year and God will see us through.

The last time I wrote, Shayne and Christine were driving to Columbus in order to receive the badly needed platelets. (Unfortunately, Tiffin didn't want to do a transfusion on a child so Shayne drove her to Columbus which was probably the safest thing.) Of course Tiffin follows HIPA and wouldn't just give us the blood counts over the phone like in NYC or Philly so Shayne had to drive back to the hospital, show his ID and get her counts, then try to get a hold of the doctors in Philly and Columbus to get going on the badly needed platelet transfusion. Crazy! I joked to Shayne, "Don't they realize that I'm going to post the blood counts on the Internet? They can at least help us out and save time by faxing them to us!" Oh well! It was determined that Christi had to first go to the emergency room in Columbus - no germs there! (ha!) Columbus wanted to do their own blood counts so they stuck her again to drae blood samples, but at least their results brought good news! Her blood counts (12 hours later) were much higher than in Tiffin! (We know it's not a science so what's accurate is probably a mesh of both.) Columbus: white 2.2 (PRAISE GOD! She's making progress!!!! We really believe the "G" shots don't do a thing, unless you're going to come up on your own anyway and it appears to be the case! Thanks, Father! Tonight we told her she wouldn't have to get her injection because its Christmas.) Hgb. 9.6 (exactly the same as Tiffin reported) and platelets a big whopping 15!!!! (Remember, Tiffin's were "5" which sent everyone into high gear- get her transfused N-O-W!!!!)

Christi finally realized the seriousness of the matter when I scolded her and Shayla for running around the kitchen while I was preparing dinner. She inquired, "What are Shayla's platelets?" I said, "Between 150 - 400." She said, "What are your platelets?" I said, "Between 150 and 400." And then she said, "And mine are really just five?" I said, "Yes! Remember those toddlers at the hospitals we see who wear bicycle helmets. They do that because they have low platelets and if they bump their head they will have bleeding in the brain." She laughed and said, "I'll sit down and color now so you don't have to go get my bike helmet out of the garage." Soon they left for the two hour drive to Columbus. I knew Shayne was exhausted from the night before when he left. Ugh! This disease is a marathon that just doesn't give any breaks!

As soon as Shayla fell asleep in my bed, I started calling Shayne every 45 minutes for updates and continued that until 1 AM. Caroline and Doug gave Christi three awesome Usborne drawing books so that was keeping her busy as was an art kit I sent along. Shayne was reading the next chapters of our book to her to help pass the hours in the emergency room while she drew and colored. When he said that he was filling out the paper work as Christi was going to have to be admitted for her platelet transfusion I nearly flipped! ("What?! I think MSKCC would do that outpatient!!!!!" I said. - He knew I was just joking, but did she really need an expensive hospital stay? I don't think so.)

He said it was great to go back up on J5 and to see sone sweet familiar faces. One of the nurses greeted Shayne with a big hug- even though most didn't recognise the "Thomas Two" at first. (Remember when we left both Shayne and Christi were bald. Now they're both sporting full heads of hair. Before the chemo destroyed her hair it was long, straight and blond. Now it's short, curly and brown. Wild! Many commented on how much bigger Christi is too. She does weigh nearly 15 pounds more than when she was diagnosed 15 1/2 months ago and she's grown 4-5 inches.)

I thought at least he'd get a good night's sleep this way instead of driving home. He told me just to think of it as one night in an expensive hotel. I of course was still ticked and said, "What would have taken 4 hours in Philly or NYC is now taking over 24 hours. She only has 7 days at home and one is being spent like this!" Shayne's such a good sport. He just laughed and said, "But the toy cart will come by in the morning." Christi does love that toy cart that greets you with your hospital stay in Columbus! Praise God for the toy cart!!! She came home with a darling brown bear, memories of an enjoyable stay and she loved visiting some wonderful friends/employees that they looked up before leaving.

I'm not sure why, but they kept her on IV fluids all night. Shayne didn't sleep very well, but thankfully Christi did. In the morning, they ran her blood counts and determined she needed blood this time. (They're like vampires sucking it all out testing it so much, no wonder she needed blood! hee hee) In an effort to help other NB parents considering high dose MIBG treatment, listed below are her counts. We do believe her white count (infection fighting) is starting to come up, but seriously question whether her platelets will ever recover. We know the very real possibility exists that they may not. It also seems that her ANC may be rising, or at least holding steady. We're thankful! As a prayer warrior recently emailed me, "UP, UP and AWAY!" (Up, up with the blood counts and away with the neuroblastoma!!) It was a long day and they arrived home before dinner on Tuesday - nearly 24 hours after departing on Monday. (Nothing can ever be simple it seems.)

(TH.) Dec. 18th (Day #44 & 30) CHOP

Hgb. 7.9 *transfused

Plt. 32

white 1.3 ***G daily shots started*****

ANC 559

(M) Dec. 22, 2003 (Day #48 & #34) week 7 (Tiffin, OH)

Hgb. 9.6

plt. 5 *to be transfused in Columbus

white 1.7

ANC 800

(M) Dec. 22, 2003 (same day) COLUMBUS, Ohio

Hbg. 9.6

platelets 15 *admitted and transfused

white 2.2

ANC 1122

(T) Dec. 23, 2003 Columbus Children's inpatient

Hgb. 7.8 *Transfused

white 1.5

platelets 33

ANC 870

Christi received a most wonderful gift. Basically you write and illustrate a story, send it in and they put it in a hard cover binding for you along with your "Author" picture and a "dedication page". Very cute. Christi brainstormed her ideas with Daddy then called Mrs. Rombach to discuss it with her and immediately got to work. After a few hours, this is what she came up with. (This bias mother thought it was darling and contained excellent content with a sweet moral.)

Roatho's Roar

by Christine Shayna Thomas

December 23, 2003

Once there was a little lion named Roatho who went to school. Over the week they were supposed to practice their roars. Roatho was a little worried about the roaring test. He had a very tiny roar. He wondered if the others would laugh. When it came to his turn, he had a roar that sounded like a mouse. Joe said, "Hey look! I'm Roatho," as he squeaked like a mouse. Everyone laughed. Roatho felt sad. Mrs. Roachy tried to cheer Roatho up, but nothing worked. Roatho went home sadly. His Mother and Father were worried. Roatho wondered why they were worried. Before they could answer, the phone rang. There were lots of "unhuns", "okays", and "uh-ohs!". When they got off the phone, Mother said, "I knew this would happen." "What would happen?" asked Roatho. "The poachers would come again." said Mother. "Who were you talking to?" asked Roatho. "The king!" said Mother. "How are we going to survive them this time?" asked Roatho. None of the other lions had any ideas. Suddenly, Roatho had an idea. "We could ask the mice for help." "Mom said, "Mice are afraid of us." "Just afraid of our roar." said Roatho which made Mother understand. Roatho went to talk to the mice. Along the way, he bumped into a classmate. "Hi squeaky toy!" he said. Roatho just kept walking until he reached the mouse hole. He talked to the mice about the poachers and how they could save him. They mice were glad to do a good deed so they said yes. They taught the lions how to be sneaky. They taught them how to camouflage themselves. When the poachers came, they were ready - but still they planned to use some of their lion skills. Roatho thanked them and said, "Bye." All the lions loved Roatho and they never called him squeaky toy again. When he grew up he became king of the lions and mice were always friends of the lions. 12/23/03 (age 6 1/2 years)

Christmas eve found us playing games in front of the fireplace. Christi started asking at 4:30 PM if it was bedtime because Santa was coming. They were in bed VERY early and Shayne and I enjoyed his Mother's company. Unfortunately, after midnight she said that she felt a bad cold coming on and because of Christi's lack of an immune system she headed home. Oh, we felt terrible! I know how much she enjoys watching the girls open up their gifts on Christmas morning and she worked so hard making a lasagna for Christmas dinner. While I'm thankful that she was keeping Christi's best interests in mind, I'm disappointed that she was so ill. Shayne called her on Christmas day and she was very sick. My Mother and Paw Paw Joe came over and enjoyed watching the girls open their gifts as well as Joan's lasagna. We all will treasure special memories of Christimas Day 2003! Thank you!

Happy Holidays! Thanks for your love, support and prayers. You have richly blessed us! We are extremely humbled and thank you from the bottom of our hearts! Merry CHRISTmas!

Warmly, Angela

Christi's Joke: Why is one mitten always wrong? Because the other one is always right!

What's Next? Blood counts will be checked tomorrow. Hopefully, she won't need any blood products and we can remain in Tiffin! (If her counts are low, I'll drive her to Columbus for transfusions.) Saturday we will spend the day at my Mom and Paw Paw Joe's. The girls are anxious to see their cousins! Christi needs to depart for Philadelphia on the 27th or the 28th. We're unsure if we're all going or not. The drive is nearly unbearable and the stress/tension of the week will be horrendous. It's a lot for Shayne to manage on his own, yet I feel it may be best if I stay by the phone and try to give Shayla a great week here instead of taking her along and subjecting her to the stress of the week; however, Shayla and I may go too. The full work up of tests begins December 29th. We've played the final card, the results will determine everything. Tension has been building for days.

Prayer Requests: That Christi's blood counts recover soon and that all tests and scans show no evidence of disease granting us a desperately needed ticket to keep on fighting for a full and complete healing. Lord, hear our prayers.

I don't know who wrote the following poem, but early this week I emailed it to some dear neuroblastoma friends who children became Angels this year and I want to share it here with all of our friends who have loss their precious children due to cancer or any other illness or accident. Your pain must simply be unbearable!

Christmas in Heaven

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 the 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 here

I have no words to tell you 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
But I am not so far away, we really aren't apart

So be happy for me, dear ones, you know I hold you dear
And be glad I'm spending Christmas with Jesus Christ this year

I sent you each a special gift, from my heavenly home above
I sent you each a memory of my undying love

After all, love is a gift more precious than pure gold
It was always most important in the stories Jesus told

Please love and keep each other, as my father said to do
For I can't count the blessings or love he has for each of you

So have a Merry Christmas and wipe away that tear
Remember I am spending Christmas with Jesus Christ this year

And our Texas friends emailed us this which we thought was a hoot!

‘Twas the night before Jesus came

‘Twas the night before Jesus came, and all through the house

Not a creature was praying, not one in the house.

Their Bibles were laid on the shelf without care

In the hopes that Jesus would not come there.

The children were dressing to crawl into bed,

Not once ever kneeling or bowing a head.

And Mom in her rocker with baby on her lap

Was watching the Late Show while taking a nap.

When out of the East there arose such a clatter,

I sprang to my feet to see what was the matter.

Away to the window I flew like a flash

Tore open the shutters and threw up the sash!

When what to my wondering eyes should appear?

But angels proclaiming that Jesus was here.

With a light like the sun sending forth a bright ray

I knew in a moment this must be The DAY!

The light of His face made me cover my head

It was Jesus! Returning, just like he had said.

And though I possessed worldly wisdom and wealth,

I cried when I saw Him in spite of myself.

In the Book of Life which He held in His hand

Was written the name of every saved man.

He spoke not a word as He searched for my name,

When He said, "It’s not here" my head hung in shame.

The people whose names had been written with love

He gathered to take to His Father above.

With those who were ready, He rose without a sound

While all the rest were left standing around.

I feel to my knees, but it was too late;

I had waited too long, and thus sealed my fate.

I stood and I cried as they rose out of sight;

Oh, if only I had been ready tonight,

In the words of this poem, the meaning is clear;

The coming of Jesus is drawing near.

There is only one life and when comes the last call

We’ll find that the Bible was true after all!

Finally, one of the girls in "Christi's Clubhouse" has recently relapsed.

This "12 Days of Chemo" is on her website. Sadly, we welcome Michaela back to a world of chemo and harsh treatments and we wish her the best for achieving NED again! God be with Michaela and grant her the miracle needed to save her life.

The 12 days of Chemo

By Roxanne Pasma's Mom

On the twelfth day of chemo my nurse gave to me, twelve discharge papers, 11 patients puking, 10 lungs a listening, 9 pumps a beeping, 8 meals a stinking, 7 swabs a swabbing, 6 gauze a laying, 5 IV lines! 4 falling hairs, 3 hebiclens, 2 chemo gloves and a wish that I was cancer free!