Journal Entry


Friday, December 16, 2005

When you wish upon a star

Makes no difference who you are

Anything your heart desires

Will come to you!


Receiving directions from Captain Henry, Christi “steers” (wink!) the Disney Wonder while sweet Officer Karen and Eric & Alicia look on from the Bridge.

We’ve wished upon many stars last weekend; we made wonderful memories too and we continue to pray that the wish our hearts desire will one day come true!  The girls and I had never been to the Bahamas before and it was blissful; however, it’s also great to be safely back home!  Although Dr. Maris said that taking such a long break in the midst of Christi’s chemo treatment was “unorthodox” he agreed that we should go – so we did!  Now, a week later, Christi’s been having headaches and some additional vomiting so I’m questioning whether we should have taken the trip or not, but.... hindsight is 20/20 and I can’t second guess myself.


“Wow!  It’s really Cinderella,” thinks Shayla – dressed
as a "mini Cinderella" for the night.

The Disney Cruise with the Cooks was incredible – even if Grandma Donna let the girls watch “The Titanic” movie before we left and even if I did forget and leave the girls’ passports in Ohio!!  Oops!  Upon seeing the ship – the Disney Magic, the girls were in awe – ok we all were!  Pristine waters, tranquil surroundings, treasured friends and blissful children – the Disney cruise far exceeded our high expectations!  (Our only regret was that it wasn’t long enough!)  Before I write about our unbelievable trip, let me regress a bit as it’s been a while since I last updated.

Prior to leaving for the weekend adventure, Shayne took Christi to the radiation center to meet the doctor and to have their initial consult.  Shayne said, “It couldn’t have gone any better.  The Doctor was wonderful and Christi was a charmer!”  Later I asked Christi to tell me about it and she said, “They have cookies and hot chocolate!!”  (Ahhh, to be eight!!)  Fatigue, sunburn, itching, another CT scan – none of that - cookies and cocoa is what stuck in Christi’s mind!

Next, it was my turn to take Christi to the gorgeous new radiation center a few days later.  We got the first morning appointment so that we could zip right off to school.  Christi was quite a little trooper doing the CT scan (where they said they’ve never had such a little body up there before – she is their first pediatric patient and we are very thankful they’re treating her) and allowing them to put the purple permanent markers on her. 

Then it was time for the tattooing which allows them to use laser beams to line up her body in the right position each time.  She tried to be brave, but it was hard on her and many tears were shed.  I really appreciate everyone’s patience with her.  She needs to get herself together so that she can feel like she’s in control around needles and it took a while.  Despite the fact she gets stuck with so many needles, it’s never easy being poked.  The sweet ladies kindly told her how well she did and they joked that she could give some of their adult patients some pointers.  When we were walking out hand in hand Christi looked up at me with teary eyes and asked, “Will I have to do that every time?” (meaning the needles).  Oh, I was so sorry I hadn’t explained it better to her.  I reassured her that from then on there would be no needles there and she’d “just” have the radiation treatments, they don’t hurt and it’s even invisible. 

Furthermore, I wish I would have thought to prepare Shayla because after school when we went to the hospital for Christi’s blood work, Shayla pointed at Christi’s purple marks around her middle after Christi took her shirt off to get her port accessed for the blood draws.  “Christi, what did you do?!!” Shayla demanded upon seeing the purple permanent marker on Christi’s body.  (Oops!  It did look like she colored on herself. Hee!) 

Christi’s counts were great (except for her LDH level – one that measures tumor cell activity, yikes!).  All of her blood counts were in the normal range at:  hgb. 12.2, platelets 152, white 4.1, ANC 1,700.  Praise God!!  The study sample of her blood was shipped off to Wisconsin to be tested to see if she already has the antibody or not.   (Later I learned from my teacher friend, Anne, that her husband received the call from the hospital needing the dry ice and he was happy to deliver.  Thanks, Matt!  With the additional blessing from ‘Arnold Vending’ I knew it could only bring good luck!)

Unfortunately, her LDH level was 242 (normal 100-190) up like it was this summer when her disease took off rapidly, but Shayne has reassured me that her counts were done early in the chemo cycle when technically her cancer should be at its highest point.  Dr. Maris told me to concentrate on the fact that Christi is feeling well for the Disney cruise and to have a nice trip.  (This man definitely knows the score and what’s important in this unique child’s life.)  Prior to the trip Christi told us a few times that her neck hurt and so I panicked with fear of the cancer spreading, but soon she had the flu so I was rejoicing that it was just the flu.  (That probably sounds crazy to parents of healthy children, but my cancer friends will totally understand why I was thrilled she had the  flu!)   She was down for a bit (or should I say up and running to the bathroom) but soon back into the full swing of living life.  Whew!  Shayla’s Christmas program at school was delightful and both girls were fitted for the costumes for the June ballet recital at dance classes.  The Dance Unlimited’s costumes are lovely again this year!

Now, before the current treatments update, I’ll jump back to our very special trip on the Disney Cruise with the Cooks!  We met Eric and Alicia in Orlando and soon we were all in a van driving to Port Canaveral.  (When Christi was car sick for about the fourth time during the 45 minute drive, I could only think of poor Eric and Alicia and figured this was more than they had bargained for.  They are such wonderful people for putting up with us!  “Never a dull moment with the Thomases”) The Disney Cruise was truly an unimaginable fantasy!  For the most part I didn’t let myself think about “cancer” even though never able to get it completely away from my mind.  The cruise was filled with excitement and indulgence for all six of us!  The first night was one of rough seas causing “sea sickness” for Christi, but that soon passed and the girls had the time of their lives and we adults had fun, laughter and relaxation like we were truly in living in paradise.  Shayne and Eric tried their singing talents with some karaoke and Eric is just so funny I laughed out loud many times during our trip!


Shayla with her favorite Disney characters – Chip & Dale!

Even before boarding Shayla was greeted by her favorite Disney Characters – Chip and Dale!  Appropriately enough, she was even wearing her “Chip & Dale” tee shirt.  Upon board we set off with the girls to explore the ship, have a nice meal and we also watched the movies “Madagascar” and “Charlie and the Chocolate Factory” from our very large (for cruise ships) cabin complete with a fridge, two sinks and two port holes – one for each girl!!  Stellar!!  Thank you!!!


Queasy Christi on the first night up in her little bunk.

Very rough waters were soon experienced after we left Port Canaveral.  Our waiter told us it was his 400th cruise and he’d never experienced such rough sailing.  Christi crawled up in her little bunk bed as she was too queasy to go to dinner.  Wonderful Chef Winston created a lovely fruit plate to calm Christi’s stomach and a tantalizing meal I took back for Shayne who stayed with Christi in our cabin.  Christi woke up about 3:30 AM and innocently asked, “Did I sleep through dinner or something?”  It cracked us up!  The sea was calm by then and she was fine.  The wonderful people at Disney took great care of us sending a lovely and generous toy bag to the girls complete with autographed pictures of their favorite characters!!  Amazing!


Shayla gets a smooch from a dolphin at the Dolphin Encounter in the Bahamas !

Our first stop was in Nassau where Eric became a man with a “porpoise” (hee hee) and took the girls to the Dolphin Encounter.  It was very tranquil – the small boat ride over pristine waters to another island, the dolphin program, and hanging out on a small, quiet beach with Eric & Alicia prior to returning.

The evening found the girls once again wanting to go back to the amazing complimentary kids’ areas so we checked them back in.  Shayne and I were then able to enjoy some lovely piano music with Eric and Alicia; we even got in some dancing.  The nightly shows in the large theater were incredible – truly as magical and spectacular as you’d find at Disney World, just on water.  We all loved them!  The second night we received a message informing us that Christi and Shayla had been invited to join the Captain on the Bridge just before we’d pull out of port the following day.  We didn’t know what it would entail, but it sounded very special.


Christi & Shayla are playing in the “Mickey Pool”

The last day was spent swimming in the Goofy and Mickey pools on board which were surprisingly peaceful and quiet.  At lunch time we left the ship to go to Castaway Cay (pronounced “key”).  This is Disney’s private island and we absolutely LOVED it!  Eric treated the girls to snorkeling and Christi was able to spot a VERY large fish. 


Wonderful Webby creates a sand lizard!

Eric, a man of many talents, made a great lizard out of sand (instead of an ordinary castle) and Shayne buried Christi up to her neck in the sand so that the Cooks didn’t know where she went for a little bit.  So funny!  The girls enjoyed collecting shells, splashing in the Bahamian waters and Disney’s sandy play area just for the little ones. Christi asked, “Can we come and just stay here for vacation sometime?”  (Wishful thinking!)  On the island, Shayla enjoyed a large plate of fruit while Christi ate like a champ dining on BBQ chicken and ribs.  Dancing in man-made snow (like foam soap perhaps) amidst Christmas decorations was another highlight for the girls on the island.  I enjoyed lounging and conversing with dear Alicia – an amazing and very special woman over a Coke.  Ahhh.  It was a glorious day!  Oh, did I mention a special dessert plate was waiting in our cabin each afternoon?  Delightful! 

On our last night, Shayne went to the fitness center to get in yet another work out while I showered the girls and tried to explain to them what the Bridge was and how special it was to be asked to meet the Captain of the ship.  What I had envisioned was a group of 30-40 people; what I had not envisioned was that it was just our little group of six that was asked to participate in this incredibly special event.  Thank you, Disney!!  We met Officer Karen and another Officer and with lock and key proceeded through a special hallway to the Bridge.  The site from the Bridge was stunning, the event surreal!  Sitting high above the ship were the controls to run the cruise ship which sails with nearly 3,000 passengers.  We could see all around and everything appeared to be state of the art.  When it was time to leave Castaway Cay, Christi and Shayla were put into place to push the button to blow the whistle which of course on the Disney cruise is not the ordinary “honk, honk”, but the tones of “When you wish upon a star..”  It was priceless!  And we were off!  Captain Henry autographed a Disney photo album, answered questions and kindly posed for pictures.  After we were finished soaking up the beautiful surroundings, we headed back in for another splendid dinner cooked for us by Chef Winston. 


With Chef Winston and our servers at Triton’s restaurant.

Chef Winston totally outdid himself for our “Goofy gang” every night of the cruise!!  Dining on specially prepared fine cuisine including:  shrimp, escargot, beef tenderloin, lamb, lobster, locks, etc. was very much appreciated!  He even gave the girls autographed chef’s hats and special certificates.  Very, very sweet! 


Our lobster dinner by Chef Winston – incredibly amazing!  Thanks, Disney!

All too soon it was time to pack up, to say goodbye to the wonderful Cooks and to fly back to Cleveland where we discovered snow and lots of it!

On Monday after school Christi started her first radiation treatment.  It was longer than we had anticipated, yet we were very thankful for them working so hard to ensure precision and accuracy.  It was hard for Shayne and I to watch her in another room on the monitor and know what was being done to her and for anyone who thinks I talk fast, you’ve never heard me pray!  She’s getting radiation to the targeted area from three different beams so I pray during each “hit” and it doesn’t last long so I have to pray fast – and humor myself at the same time.  You can only look at your little daughter up on a big table with huge machines around her and not be haunted by it all so praying helps me!  “You’re right Mom; it is invisible.  I thought it’d be green,” said Christi.  Radiation will continue through December 23rd.  It is painless, just a little time consuming as we’d like to come home and relax after school; yet again I remain full of thanksgiving and gratitude that working and going to school while getting radiation here in town is even an option.  (That is quite amazing to my fellow cancer friends.) We have been richly blessed! 

Tuesday the chemo arrived from CHOP so she’s back on the chemo too and that hasn’t been going so well.  She’s now resorted to begging and pleading that we “do it later”.  I know how she hates drinking the vile liquid which often comes back up.  One day after “losing it” I crumpled to the floor and sobbed.  I just couldn’t help it.  I know if it’s not going in her it’s not doing any good and I hate to have to even put her through this all anyway – yet I know I have no options.  Cancer stinks!

Thanks to our good friends at “Arnold Vending” Christi’s blood sample had extra blessings!!  “And the Lord, He is the one who goes before you.  He will be with you.  He will not leave you nor forsake you; do not fear nor be dismayed.” (Deuteronomy 31:8).  Word was received yesterday from Dr. Maris regarding her blood which was sent to Wisconsin to see if she’d qualify for the protein fusion study at CHOP in January.  He wrote:  all is a go, we will make arrangements.  (Currently, I’m trying to pin down details with CHOP so that I can buy our airline tickets for January.)

From Madison , WI  12/14/2005

Dear Dr. Maris:

We have received a serum sample specimen obtained on 12/07/2005 from patient C.T. We tested this specimen for the presence of antibodies directed against the chimeric ch14.18 monoclonal antibody and against the humanized hu14.18 monoclonal antibody, using our  "bridge " assays, which were previously used for evaluation of samples from patients enrolled in CCG- 0935 trial [M.F. Ozkaynak et al.,J.Clin.Oncol.(2000),18(24):4077-4085], or for analyses of specimens frompatients receiving hu14.18-IL2 in our adult melanoma [D.M. King et al.,J.Clin.Oncol. (2004),22(22):4463-4473] as well as pediatric neuroblastoma  (ADVL-0018) [K.Osenga et al., (2005) submitted] studies.

Based on these ELISA assays we found this specimen negative for anti-14.18 antibody reactivity. According to the current criteria, this patient now is "negative" and thus would be potentially eligible for treatment with the hu14.18-IL2 immunocytokine. Eligibility of course is based on other parameters described in the study protocol.

Please contact us if we can provide any additional information.

Sincerely,
Paul M. Sondel, M.D., Ph.D.

Word was also received from Angel Ryan’s sweet family who was so kind to notify me that one of MSKCC’s incredible volunteers passed away due to cancer - 45 days after his diagnosis.  Below is the sympathy note I mailed to his family.  He will forever live on in our hearts!

To Lew's Family,

Please accept our deepest sympathy on the loss of your loved one.  He was loved by our family as well!  From Dec. 2002 to August of 2003 we lived at the Ronald House and treated (nearly daily) at MSKCC.  Many nights in the hospital were brightened by Lew's caring and hospitality.  Many days in the clinic were happy - thanks to Lew!  Our daughter loved his hats; we loved his compassion, thoughtfulness and gentle manner.  We went back to MSK in July 05 just to visit.  Lew was soooooooo happy to see Christi was doing well.  (Days later we learned she had relapsed.)  I'm glad that Lew most likely never knew of our horrible setback, but now I know he knows and I know Christi has a special angel in heaven - again watching over her young life and again trying to make it better.  Thank you for sharing Lew with us!  Our prayers are with you all.

Love,
the Thomas team from Ohio

Unless something should change, I shall not update until Christmas.  By that time I should have our tests/scan schedule booked and hopefully new treatment plans finalized.  I am filled with joy that this looks like it is really going to happen now that she’s jumped over the first big hurdle.  I’m so worried about her LDH level, her headaches and the new vomiting.  I pray that this new trial will beat this beast back.  Thanks for letting me share with you the blood results, the radiation and what fabulous memories we have of an incredible time spent with “Webby” and Alicia.  Thank you, dear Cooks!!

“Seniority Magazine”:  If you happen to live in Seneca County , be certain to pick up a free issue of “Seniority Magazine”.  Christi and her grandma Nee Nee (Shayne’s Mom) are on the front cover and there is a lovely article written about Christi’s journey.  Eric will most likely have it scanned onto this site in the near future so that all can read it.

Here’s wishing you and yours a very healthy, peaceful, happy and safe holiday season!!

With peace,
The Thomas team Mom, Angela

PS:  Please keep the Christmas cards coming!!  We love to read your messages and your sweet family photos adorn our refrigerator!  Shayne recently asked me if I was going to send out Christmas cards this year since I have not done so since Christi’s diagnosis.  When I told him that I was not planning to do so he told me, “No one is going to send us any cards any more,” so please keep them coming.  Hopefully, next year I’ll be back into the grove of sending CHRISTmas cards!!

Shayla’s Disney Joke: Why does Snow White hang out at the photo store?  She keeps hearing, “One day your ‘prints’ will come.”

Shayla’s Funny:  While on our way to a high school basketball game Shayla asked, “Will this game have a confession stand?”  (Yes, that’ll be three Hail Mary’s with your popcorn, Shayla – hee hee!  She meant “concession stand”.  Hopefully the new tubes in her ears will help with her hearing.  She’s been on Tylenol and Motrin nearly every day for a couple of weeks now.)

What’s Next?  Radiation and chemo this week, then “just” the radiation treatments will continue.  Shayla will have surgery to get yet another (third times the charm hopefully) set of ear tubes on Dec. 22nd.  Hopefully that will allow her to hear better and not to have so many earaches.  To be accepted into the next study Christi needs to be completely off of treatment for two weeks so we are working out plans, but they’re currently asking that she arrive on Jan. 4th for tests/scans and then begin this new trial Jan. 9th or Jan. 17th.  We’ll see.  

“SEE YOU NEXT CHRISTMAS” by Nick Snow

Some of you know that I occasionally write about the only refractory/relapse neuroblastoma stage IV survivor I know – Nick Snow, a teenager, who gives me great hope and inspiration!  Nick was adopted by his loving parents and later was diagnosed with “the beast” at age six.  I remember being on the floor of the Ronald House in NYC when I received word that he was – after 84 straight months of treatment, NED!!  Now, three years later he doesn’t remain pain-free, but he is still cancer free.  Praise God!! I’d like to post an essay he wrote here because it’s heartwarming and a love story.  It also let’s me know what Christi may be thinking throughout all of this (worried about us!) and it gives me optimism and encouragement that one day Christi may – against all odds, be a survivor and give others hope too!!  Congrats on your fine writing, Nick Snow!!  We hope to see you and your mother again in Chicago this summer!

SEE YOU NEXT CHRISTMAS
by Nick Snow

I am writing this story in memory of my friend Paige who, like me, had neuroblastoma. Paige, Jessica and I, three California teens with cancer, went to Washington DC last year to speak out on behalf of Children’s Hospice & Palliative Care Coalition. Paige was a light to all of us, a ray of hope and a great friend. I miss her very much.

When I was ten years old, and had already been in treatment for my cancer for 4 years, a doctor told my mom just before Halloween to celebrate Christmas early that year, because I would not make it until Christmas. I want to share my story with you to show that doctors know a lot, but they don’t know everything. I have enjoyed every Christmas since that one and who knows, maybe I’ve got many more to celebrate. I hope my story lifts your heart and your hope.

My dad found a lump in my side when I was 6 years old. His eyes got really big and he showed it to my mom and they both got really worried. They took me to the doctor who took one look at the lump and told us that we needed to go to Children’s Hospital right away. I remember my mom’s face and felt really bad for her. I tried to smile to cheer her up.

The hospital was scary. They gave me lots of tests and lots of treats. I remember having to wait a long time in lots of waiting rooms and playing with other kids who looked really sick. Although I was curious about what was going on with me, I was more worried about my mom and dad.

On the second day, while we were waiting in the hallway at the hospital for a really long time, a doctor came by and told my mom we needed to go to the red team. My mom asked, “What’s the red team?” The doctor said “oncology.” We asked our nurse where pediatric oncology was, and she said, “Right here. This whole floor is oncology.” It seemed like everyone knew I had cancer but me and my folks. That’s when I asked my mom and dad, “Is what I have cancer?” I could see they wanted to cry, but we were all being super brave. They told me, “Yes, you have cancer, but it is easier to get better when you’re a kid. You’ll be okay.”

“Of course we are going to need to do more tests, but this is neuroblastoma and everyone dies from it. Nick will not survive this disease, no one does.” One of my doctors – not my favorite.

All I wanted to do was go home and play the drums – which back then consisted of a bunch of my mom’s old pots and pans, but the doctors had other plans. They said I could not go home, even to get my stuff. I needed surgery right away. Today.

In the operating room doctors and nurses kept telling me how brave I was. I wasn’t doing anything - just sitting there waiting. Everybody was running around talking. Although I couldn’t understand the words, I knew that what I had was really bad, that they thought I was going to die but everybody was smiling.

Before they even gave me any anesthesia and I was still awake I saw something in the corner of the room. Don’t ask me what it was because there isn’t any word to describe it. Some people might think it was an angel, some people might think it was Jesus or Buddha or Santa Claus. It doesn’t really matter. All I know is, I felt absolute peace and from that moment on I have known I would be ok. Now, “ok” doesn’t necessarily mean that I am going to live to be 100 years old or even to 18 for that matter. I just know that I am going to be ok - no matter what happens. From the moment I saw that “being” in the corner of the operating room before my first surgery, I have had a peace that I cannot describe in words. It has made it possible for me to go through 10 years of too many surgeries and chemotherapies to count, and all the terrible after effects from my treatments. Too many doctors telling me and my parents that I was going to die. So many ups and downs - pain and freedom - death and life.

My tumor was huge. They tried to get as much of it as they could but the cancer was everywhere. They thought treatment might buy me some time and I knew that my parents needed as much time as they could get with me.

For the next 7 years, we went through treatment. That is no small thing. I want to take a minute here to thank my parents. I was adopted because they wanted a baby so bad. I started out as a foster child. They loved me the minute I came to them and because I am of African decent and they are white, they had to fight extra hard to get me. My mom has been with me always. I think we were chosen for each other even though she didn’t give birth to me. During all the treatment, my dad had to work so he couldn’t be there full-time like my mom, and he worried a lot. He came to the hospital every single day even when he had to work. The first year, I was in the hospital for about 200 days. I wish every child in the world could have such awesome parents.

There would be more peace in the world if everyone had parents like mine. Now, back to my story. There were so many things that happened a long the way, but here are some that might be interesting to you.

One time when we were on our way to the hospital our car broke down. My mom said, “Well, here we are and here the hospital is not. You’ve got to be at your appointment. So, we’ll just have to hitchhike.” I was really nauseous from the chemo. I had no hair, I was skinny as a skeleton, I had a tube coming out of my chest and a bucket to throw up in. So there we were, looking really strange and probably very scary thumbing for a ride to children’s hospital. We got picked up by a really nice family who was on vacation…from Sweden …they didn’t speak any English. My mom kept saying, “Children’s Hospital - go that way” and pointing. She pointed to me and said, “Very sick, hospital…doctor… big building…hospital.” They were smiling a lot and nodding. Suddenly a light went off in the lady’s head and she started to explain to the rest of them in Swedish that we needed to go to the children’s hospital. Then they all started nodding really hard and talking in Swedish. We made it to my appointment on time. Mom and I love to tell that story and laugh. We wish we could find those people and thank them.

The bone marrow transplant was horrible…. augh, I would never wish it on anyone. I was 7 and they said that a bone marrow transplant was the only thing that could possibly give me a chance. I just wanted to get out of the stupid hospital and play basketball with my brother. Being in isolation was the worst; it’s like being in prison. The rules say that you have to stay isolated for 100 days after a bone marrow transplant. My mom promised that I could go home when the daffodils bloomed. Every day in isolation I concentrated on daffodils blooming and making my body produce white blood cells. Well, the daffodils bloomed one month early that year and so did my blood counts! Sure enough, the doctors were baffled that one month earlier than “normal” my blood counts were strong enough to go home. The docs and nurses were blown away! Never before had they seen anything like it. My mom and dad left a bouquet of daffodils in the room for the nurses and we went home early.

I have been close to dying so many times. My big claim to fame is that I think I hold the world record for flunking hospice. I officially flunked hospice twice. Yippee! The doctors have told me so many times that I was “dying” and put me on hospice care. (If you think about it, we are all dying.) Being on hospice meant that we got home nursing, a social worker, a chaplain and volunteers who would come to our house and help us. It seems kind of strange that they would only come when I was “dying” and not when my family and I really needed it most like when I was going through all the hard treatment. I surprised everyone and got better on hospice care. I think all the support really helped me get better. But when I decided that I felt better enough to try a new treatment, hospice couldn’t come any more. That was hard on all of us – to lose support just because I wanted to try to live.

It would be so great for families like mine if we had support like hospices provide even when we are going through the treatment. It seems strange to lose support just because you want to try to live. Last year I went to Washington DC with Children’s Hospice & Palliative Care Coalition to speak out on behalf of families like mine and to urge the government to change the hospice eligibility rules when it involves kids. I spoke to Senators Feinstein and Boxer and Congressman Farr. I was scheduled to go to the White House and meet with Laura Bush too but I was too sick that morning. Some day, I really would like to stop by and tell the President and Mrs. Bush that the hospice rules need to be changed because right now they make things even harder for us and it is already really hard. Maybe I’ll stop by and see them next time I am in town…maybe next Christmas.

Nick continues to beat the odds and has been cancer free for 3 years. Visit Nick's website at www2.caringbridge.org/ca/nicksnow

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