Journal Entry


Sunday afternoon, October 26, 2003

The Littlest Soldiers
by Cheryl Jagannathan

The medals on our chests
Are broviacs for meds
Helmets won't stay on
Cause no hair is on our heads.

Our weapons of destruction
We take every day
We fight the battle within us
While we struggle on to play.

We fight with honor and courage
No Marine could do as well
We are only children
Living in this hell.

So bring on the medals
The purple hearts of wars
The gold cross, the silver star
To place upon our scars.

For we are the children of cancer
No one has fought so hard
But every day we struggle on
Our LIFE is our REWARD!

The time has arrived. Christi, along with her great Daddy, left for Philadelphia, PA after church this morning. Shayne called a bit ago to say they were delayed due to her vomiting, but now she's sleeping as he drives. He was able to stop and visit with his Grandma along the way. I called the Ronald House to let them know she would be late in arriving. They're not sure if they'll have a room tonight or not since their desk will be closed at 8:00PM. At least hotels in Philadelphia aren't as expensive as they are in NYC!! Christi was very nauseous this morning; I'm not sure what that was all about, but congratulations to our little soldier for continuing to fight this battle so bravely and courageously and for giving us all hope and inspiration as she continues marching along with such determination and grace far beyond her six years of life!!

Also, congratulations to our little artist for having her art work submission selected to be featured on a note card by the NFFC. THANK YOU to the National Childhood Cancer Foundation for selecting Christi's art work for their Art Program!!! If you didn't see the "Christi's Flower" card on the home page. On the front of the card is the flower she created in March by cutting out colored tissue paper, then arranging and gluing the pieces onto white cardstock. She created this on the floor of our room at the Ronald McDonald House in NYC. On the back of the card is a full color picture of her (along with Buttercup) and a quote she said. It also contains her age and hospital. I hope you'll consider ordering a box of Christi's cards to help support desperately needed research for childhood cancer. From the first click I made off of the ChristiThomas.com home page until my purchase was complete was less than three minutes. It was very, very E-A-S-Y. Starting five months ago, I wrote in this journal that I would update later with a childhood cancer foundation that I held in highest regard. I was waiting until Christi's card was officially ready to be sold. (And Christi's art being selected had NOTHING to do with my whole hearted support for this organization - the NCCF!) I just found out that the cards are now on the market, so here goes:

Many have asked what they could do to help. And sadly until a real cure exists for neuroblastoma there isn't much to do. How can a cure be found? Through research!!! What is needed for research?? FUNDING!! Helping with the funding, along with many other aspects of childhood cancer is The National Childhood Cancer Foundation (NCCF). It is really disheartening to know how many compassionate, wonderful and generous individuals have participated in walks for Christi for other cancer organizations when so very, very, very little of the money raised goes to childhood cancers. (For example: less then 4% of the American Cancer Society's budget goes to pediatric cancer). Now I have nothing against what are probably wonderful charities, but I know people have wanted to do something very specific to try to help our six year old so it's been frustrating for all.

The medical standards we have set in this country are costly in both time and money. Typically, it can cost tens of millions to hundreds of millions of dollars to get a new therapy or drug through our FDA approval process. In addition, this process often takes several years. Only companies with access to huge amounts of capital can pay the price of FDA clinical studies.

Before 1950, the five-year survival rate for childhood cancer was 10%. By the mid-1990's, the five-year survival rate was 75%. Today, eight out of 10 children diagnosed with cancer can successfully be treated. Unfortunately, for us, neuroblastoma survival rates are the lowest of childhood cancers. What is needed to find a cure is research so that neuroblastoma will one day hopefully enjoy the very high survival rates that many childhood cancers have.

Every school day another 46 children in the US are diagnosed with cancer. Nothing can be done to prevent childhood cancer. No one knows why children get cancer. One out of 300 children in the United States develops cancer before age 20. The median age when children get cancer is 6. Cancer kills more children than any other disease. So the research efforts must be intensified. Everything now known about curing children of cancer has resulted from research.

As a well respected oncologist recently wrote: Pediatric cancer research depends very much on philanthropy to make up for sources of funds (such as the lack of large scale pharmaceutical company support) enjoyed by adult oncology. Unfortunately, philanthropy seems in the USA seems to mostly go to a couple of major centers when it comes to pediatric cancer. The latter, combined with the down-turn in the economy that has prevented potential donors from making gifts planned back before things got bad has also had a negative impact. I don't think many folks expect the decreases in support from government sources to change anytime soon.

So what is the NCCF doing to help improve the survivor rate for neuroblastoma? The National Childhood Cancer Foundation is dedicated to reducing the devastating impact of cancer by supporting clinical and laboratory research on cancer causes, treatments, and cures, and by education and advocacy for the needs of children with cancer and their families.

The NCCF supports the work of the most prestigious childhood cancer treatment and research centers in North America, the Children's Oncology Group (COG). This distinguished team is at work in the laboratory, conducting research on the biology of cancer cells, to discover the reasons cancer occurs in children and to develop new treatments designed to destroy cancer cells, and procedures which can correct or overcome the malignant behavior of cancer cells. All of Christi's hospitals have been COG members and we're glad they all work together because childhood cancer is so rare individual institutions couldn't do their own studies.

In addition to funding lifesaving research, the National Childhood Cancer Foundation promotes education and advocacy for the needs of children with cancer, in the belief that children with cancer and research on childhood cancer deserve higher national priority. Through the Foundation fellowship program, young physicians are encouraged to pursue careers in childhood cancer care, research and teaching. Less than 6% of NCCF's total expenditures are spent on fundraising and administration, leaving over 94% for their mission to find cures for children with cancer.

Thank you for your hard work and dedication NCCF!! Now I'll get off of my pediatric cancer soapbox and move on to our week and to what lies ahead for our little sweetie.

Monday after school, Christi was able to walk with the other little girls to Brownie Girl Scouts for the very first time. She loved it! She has a wonderful Leader; thanks, Emily!! Due to my having five teachers' meetings in seven days, Christi was also able to do some special and new things like going home with friends and riding a real school bus this week. Yipeee!

On Tuesday, Shayla received some darling "kitty" ears in the mail. Immediately she wanted to dress up like a cat and go to story hour – so we did. Thank Heavens Mrs. Harner, the story time librarian, was a very good sport about it! That evening Shayne and I enjoyed the first dinner and show out at the Ritz for the first time in about 18 months or so. (The Ritz used to be a staple in our life; we've really missed the theatre!) We enjoyed Steve and Lynn's company at dinner and at the Ritz; it was fabulous to see everyone. (Well, it's always hard: People don't know what to say to us and we don't know what to say to them, but it was very good to know how much people care.) Thanks to Mike and to Roppe I was able to meet Anne Murray after the show, while Shayne volunteered to help load up the equipment back stage which took a couple of hours. As I was heading out the door to take Lynn home I stopped by to say goodbye to Shayne working backstage. He was carrying a drum and said, "Christi's right. I can't carry a tune, but I can carry a drum." Hee hee. One of our running family jokes is that everyone can play an instrument, but Daddy can only play the radio.

Christi again had a fabulous week of second grade. Knowing that she's leaving very soon, her awesome teacher made her the VIP of the week which Christi jokingly came home and told us means Vanilla Ice Cream, Please, but really she was the Very Important Person (helper) for the week. (What a thrill! I think all of our bosses should let us take turns being the VIP for the week - helping them to do their work. Hee hee!!) Our family went to Trick or Treat at Paw Paw Joe's nursing home on Wednesday evening and we really enjoyed the great event. The girls liked getting candy from the elderly residents and Mom and I enjoyed the perfect temperature. (We were indoors of course!) One of the residents looked at Christi and said, "She's a beauty. And she's got her whole life ahead of her." I smiled politely and thanked the very kind gentleman, but thought to myself, "I'm willing to bet that her anticipated life expectancy is much shorter than his." I attended five teachers meetings after school in the past seven days; so it's been completely normal around here and Shayne has enjoyed his work at the bank. On Friday after ballet, Christi and I went out to the Wagner's as Carla wanted Christi and I to look at some dress making patterns she was considering for Christi's First Communion Dress. Well, what a surprise to find absolutely breathtaking and stunning patterns for little girls' dresses - wow! Also, it was a nice surprise to find State Representative Wagner at home. He immediately put aside his reading and gave Christi horsy back rides and plenty of attention while I caught up with Carla. Christi says " Mr. Wagner is fun!" Christi was also thrilled to check on Buttercup's mother who is doing just fine! (Thanks, Jodi!) Saturday found us driving to Toledo for their "Boo at the Zoo" along the pumpkin path. Christi dressed as The Cat in the Hat while Shayla was Clafairy from Pokemon thanks to a darling donated costume she absolutely loves. The girls have been receiving entirely too much candy, but little do they know that I am planning to use it in my math lessons all this week as the kindergarten students and I will estimate, organize & sort, graph and count the Thomas girls goodies!! (Of course they'll all get to eat some too! There's nothing better than incorporating food into lessons. - hee hee) We also enjoyed the Ritz's children production of "The Lion, The Witch & The Wardrobe" on Saturday afternoon even though I kept thinking back to the very last time that we attended a show with the girls. It was April of 2002 - The Wizard of Oz. Christi was yet to be diagnosed and as she sat beside me in the back of the dark theatre she kept whispering to me that her back her really bad. She had our friends Kyle and Emily over after the show and instead of wanting to play with them she opted to rest in her bed because her back hurt. Little did we know what would unfold and how our lives would forever be changed just six months later.

Christi's poetry written with Daddy recently:
Piles of leaves everywhere
You gotta look or stare.
See them left. See them right.
See them every day and night.

Living in denial with everything seemingly "normal" again soon came to the end with the complaints of pain. In the past few days Christi has started to complain about some bone pain (left elbow, both hips, knee). It's devastating beyond belief. While we knew this chemo was only supposed to hold her steady I was still hoping and praying that it would rid her bone marrow of disease. Now of course I wonder if there are new spots or even more bone marrow involvement and if it's even held her disease steady at all. We have not had any tests since early July before her Make-A-Wish trip to Japan, so I'm perhaps even more anxious about this week's tests.

Following the week of tests, her high dose, double MIBG infusion with stem cell rescue Phase One clinical trial will begin. This Phase One is to test the highest dose tolerated of the injected 131-I MIBG (a radioisotope). She will be injected next Tuesday morning over two hours. Then she will be in physical isolation until the amount of radiation her body emits is at an acceptable level. Her nurses and doctors will be allowed only minutes per shift to enter her room and care for her. We, the parents - her caregivers, will be able to stay within earshot and eye shot of Christi the whole time, but we will need to remain behind lead shields that will be a certain distance away from her, as dictated by the radiation levels. We have been told that Christi should not be in discomfort (except for a full urinary catheter for several days and possible nausea at the time of the infusion). The biggest challenge will be surviving without cuddles for several days and trying to keep from getting too bored as well as realizing that anything she touches must be discarded.

She'll have tests the next week and then the following week she'll endure this process for a second time. (The hope is that more of the high dose radiation will be more effective than a single dose infusion which has been done by about 100 patients in the US.) Then will be the reinfusion of her own stem cells which were harvested in December of 2002 in Columbus. It was very hard to sign the documents releasing her precious stems cells from the BMT and shipping them out to Philly this week, but I did it. (UGH. It's hard to believe this all is really happening). So many trials require stem cell rescue so to turn over one batch and know that they're forever gone was quite difficult. And I'm continually praising the Lord for Shayne's continual insistence to harvest and harvest and harvest. Thanks, solely to Dr. Daddy, Christi has roughly five "servings" of frozen stem cells - some on each coast! Parents say the hardest part is the waiting. That's when we will learn - six weeks later whether this therapy has had the intended effect of wiping out the neuroblastoma in Christi's body or if it has done nothing other than cause her body to prematurely shut down.

So, here's a recap on this experimental MIBG Therapy: MIBG is a sort of liquid radiation that's infused into Christi's central line (IV) and it carries high dose radiation to the cancer cells. The Neuroblastoma (NB) cancer cells act like a magnet to the MIBG so it grabs onto the NB cells (this process is called "Uptake") and kills them. (Well, in theory anyway) Shayne and I will be able to talk to her over a 4 foot lead wall but only for short periods. I've packed things to entertain her self and if she gets too scared by herself, they can sedate her like they do with the younger kiddos. Anything that goes into the room with Christi will have to remain at the hospital. We can't take it home-it will be radioactive! Others have told us to bring items in duplicate so if she gets attached to one, she'll have the other to take home, but Christi doesn't typically get too attached to anything. I really can't imagine throwing away her beloved books, so I'm planning to stop by Goodwill tomorrow afternoon to stock up on some books for her. She reads to herself for long periods of time.

We know that MIBG therapy is not a cure, but could very well put her in remission. How long? We don't know. It could be 2 months it could be 2-3 years, but the cancer most probably will return at some point so even if we have success with this it's definitely not the end of the treatment road for our little princess. This is one beast of a disease to try to overcome!!

Now on to the rest of the NB world. Sadly, this wicked beast again stole two of our precious neuroblastoma fighting children this week. It's absolutely gut wrenching and I'm always filled with a mixed bag of emotions. I feel terribly guilty and yet most thankful that Christi is still fighting when so many of my friends' kids have succumbed to this beast. I know every one of them would trade places with me in a heartbeat. I'm jealous of the children who have reached NED, not to mention the perfectly healthy children. I'm angry wondering "Why Christi?!" I mourn a loss of innocent childhood for both Christi and Shayla and yet I also feel a sense of calm or peace when I reaffirm my belief that God doesn't make mistakes and somehow we will get through this no matter what the outcome.

Please keep the Angel Parents in your prayers, especially Justine and Anne who now have experienced the heartbreak that no parent should ever have to live through. Their lives will forever be shattered as they try to live without their sweet boys. An incredible fight to the bitter, bitter end - God called Lance home this week. I've never met Lance, but since January I have emailed privately with Justine (Lance's Mom) when this awesome 13 year old entered hospice. It was about the same time we received such horrible news about Christi. Lance's website is http://www.caringbridge.com/page/lance/. It's unbelievable to look at the fabulous outdoor pictures of him taken just two days before his death and to know that he was walking the day before he enter heaven's gates. These kids have so many ups and downs. His sweet mother shared that she believes he was talking with Angels in the room while he was dying which again restores my belief and faith that these children will be happy and cared for in a place far better than earth. This gorgeous young man lived in tremendous pain for a very long time. I wish these kids didn't have to suffer such painful deaths, but they do. It's so horrible. Here's a letter one of our listserv friends (the awesome Steve from Canada) wrote to Lance which I believe expresses what we NB parents feel.

Dear Lance:

I never had a chance to know you, but felt compelled to write a short note. I'm not sure if you were aware of it or not, but you have quite a following among us here. We're all pretty broken up today. If only you were breaking the hearts of young girls rather than us lot of troubled cancer parents and grandparents.

I wish I had words to console your mom, but I wouldn't know what to say. The love that you and she have is pretty special. That says a lot about her, and it also says a lot about you. You're a special person. You must also be an incredibly strong kid. A ton of that strength has rubbed off on your mom. She's going to need it, especially for the next while. I'm sure you'll reach down and give her hug from time to time to give her a little booster.

It's also rubbed off on all of us. Though we haven't had a chance to know you directly, we can feel your strength and spirit through the words of your mom. It makes us stronger too.

There are some other kids up there that we all care about. You're a big guy with a big heart. Please look out for them. We'll do our best to look out for your mom.

Steve

Also, this week I was devastated to learn that the awesome little five year old Michael that Christi treated with from New York also died of this beast. My heart is aching for his wonderful Mother Anne and for his beautiful older sister now left here on earth alone. I've shed tears and had many chats with Anne, but never really expected to ever hear that indeed the worst has happened to her sweet, precious baby. She's endured so very much and took absolutely fabulous care of Michael doing nearly everything entirely by herself. Truly a remarkable woman I'm proud to call my friend. (Anne's husband, a fireman, perished while battling a blaze on Father's Day about a year before Michael was diagnosed with cancer. How much more can one handle?!! God, grant this fine woman great strength she must desperately need.) Michael doesn't have a web site; however, the New York Daily News wrote a beautiful article "Heaven's Littlest Firefighter" which can be viewed by clicking here. My deepest sympathy to Justine and to Anne on their crushing news. I'm so sorry. I love you dear friends!

Well, Shayla and I will march along here this week and will jump any time the phone rings thinking it may be news from Shayne. Today we had a good one doing a lot of books on tape. Shayla says she can "read big books" as she listens to the beep and then turns the page - what a hoot! As soon as I have news from Christi's tests I'll update the web site. It shouldn't be too long. I'm really dreading my last day with my incredible students which will be on Friday. I'm hoping to be back in January; however, I'm 90% sure that won't happen now and I can't imagine when I'll be able to return to the classroom. This class is an awesome bunch of kids! (I know I say that every year, but it's so true! My kindergartners ROCK!!!) It's amazing how bias you become when you get attached!! I even had a horrible dream about them this week along with my normal ones about Christi. I dreamed that I was standing near the door greeting them like I do every morning waving, patting them on their backs and saying, "Hello Friends!" "It's going to be a GREAT day!!" And then I started noticing that they were all bald!!! My Principal came in and said, "They were all diagnosed with something called neuroblastoma and they just finished their first round of chemo." UGH!! How does Anne Marie ever do her job much less do it with incredible flair and quality? In my dream I broke down crying in my classroom and my Principal carried me out. Oh my! Anyway, Shayla and I are going to make the very best of our week and I hope that you do too! Thanks for everything!! We need your prayers now more than ever. God's great blessings to you! ENJOY!!

Love, Angela

PS: Shayne called to have me book him a hotel room. Apparently the Ronald house called and since he can't be there before 8:00 they will not let him get a room there tonight. UGH!!!!!!!!!!!!!!!!!!!!!!!!! And he's been driving in horrible rain the entire journal and hasn't gone over 55 mph on I76. Thankfully, Christi slept for about 3 hours. I was able to talk with her and she sounded so old. Asking me to tell her the spelling words again because she didn't memorize them all. (Only Christi!) So they'll be staying at a Sheraton tonight. It's 7:40 and they're about an hour away yet he predicts. Take care!

Christi's Joke: Oops! I didn't ask her for a joke before she left and I don't have Christi's remarkable recall ability, so I can't remember any of the 10-15 she told me this week. (I really think she has potential for being a comedian.)

What's Next? After this testing week is over, she will start the new Phase One trial with a hospital admission on Monday. She'll go to the operating room to have the catheter inserted. (Can't have radioactive pee in anything, but a lead container ya know.) Shayne and I are planning to rotate 12 hour shifts during the two treatment weeks. She will be the 3rd child in the USA to ever attempt this dose. She will be injected with a radioactive isotope which is to internally seek out the neuroblastoma (cancer) cells and radiate them. However, this will actually make her radioactive (emitting radiation through her skin) so no one will be allowed to touch or get close to her for approximately a week. She will be literally chained to her hospital bed by a catheter and lead shields will surround her. We will be able to see her over the lead shields and talk with her to comfort or calm her if needed. Any toys, books, clothing, crayons, etc. she touches will be properly discarded as "radioactive waste". (Don't worry - this kindergarten teacher has already packed her puppets!! I'm thinking the tall lead shields that I must stand on the other side of will be the perfect puppet theatre for me to perform puppet shows to help keep Christi laughing and to help pass the time! I just wish I had her energy, or Shayla's!!!!!!!!!!) When her radiation levels go down to a safe level (about 5-6 days) we will be discharged back to Ronald. (We've discussed this with her and the only thing she is concerned and upset about is having to throw away her art work she plans to do and the books she plans to write to help pass the time. (She's too young to understand the seriousness of the matter and I believe that is good! She's only six and I've told her I can take pictures of her wonderful creations from where I'll stand and we can always capture the memories with our minds to treasure forever.) Tests and scans will follow, then the next week this entire process will be repeated a second time. After that will follow a rescue with her stem cells to hopefully engraph and save her life because her bone marrow will have been destroyed through this high dose MIBG procedure. She will require nearly daily platelet and blood transfusions for a long time. This is our final card to play and all hope and prayers are that this clinical study will not be too toxic and will rid our precious six year old's body of cancer allowing her by the grace of God to continue marching on to remission despite the odds. I'm extremely uncomfortable subjecting her to this attempt at treatment; however, I feel there is no other choice. Four leading oncologists from different states also recommend this as our next step in addition to Ohio's own - Dr. Daddy!! (I was really leaning toward BSO-MEL in Los Angeles, but we may get there yet if the FDA changes some things and I do know that MIBG has a better track record.) While I can only count the successes with MIBG that I know about with less fingers than I have on one hand and I can count on all my fingers and toes the children who have died soon after, we're still going ahead with it. We knew we had to make the tough call and we've decided to go for the cure - knowing fully that may never happen. We try to make decisions that will leave us with no regrets; however, we will always have regrets is Christi doesn't make it. It appears to us that nearly every child who participates in high dose MIBG dies within 8 to 12 weeks, yet we're remaining optimistic believing that Christi is going in with stable disease (not progressive) and that she has never yet had any radiation. Those are things in her favor we believe. We know that there is no known cure for her disease which has been labeled as terminal; however, we hope that with Christi's participation, she will be like a pioneer (or perhaps a "human guinea pig" hee hee) and she will help find a real cure for ALL of these sweet kids even those who have yet to be diagnosed with this dreaded beast that lives inside our beautiful little girl called neuroblastoma. Regardless, she will forever be our hero for the way she has so bravely and courageously fought over the past thirteen months. She is our inspiration, our laughter and along with her little sister - the love of our life! Have a great week. Please consider ordering a box of Christi's cards and read on for more facts from the National Childhood Cancer Foundation! God bless you!!

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