Journal Entry


Thursday, September 11, 2003

Life is not measured by the number of breaths we take,
but by the moments that take our breath away.
Author Unknown

Our breath has been taken away more this year than any other - taken away in both positive and negative ways. Today marks the one year anniversary of Christi's diagnosis with neuroblastoma - a rare cancer with no known environmental nor genetic causes, a cancer that is extremely difficult to treat and sadly to cure. One year ago, due to my own ignorance, I didn't know anything about childhood cancer much less about the specific beast that continues to thrive inside my own daughter. September is National Childhood Cancer Awareness month. Since I see that Christi's site has now had about 170,000 hits, I think many people are well aware of the devastation that strikes an entire community when just one precious child is struck with this horrible disease. It's like ripples going across a puddle or a pond as it affects so many. People have told me, "If it can happen to a family like yours, it can happen to any of us." How true! Childhood cancer rates are rising. Cancer doesn't discriminate. It spares no one and it strikes everyone - from all walks of life all around the globe.

Last year, when the doctor in the local Tiffin hospital said the word "tumor" to me, I was sitting on Christi's very first hospital bed, I went numb and I didn't even fully comprehend that tumor meant "cancer". I really thought they'd just cut something out and we'd be back to school in a week. (Dream on, Angela! Get on the Clue Bus! Well, this year I'm not just on the cancer clue bus, but I feel like I'm driving it! hee hee) Next, it was on to Columbus where I'll never forget Shayne's stream of tears that didn't stop as I held Christi, scared and whimpering in horrific pain, in the back seat during the two hours drive to Columbus. I still remember the kind nurse at Childrens' Hospital on 6 West telling us what they thought it was - neuroblastoma (simply the most vulgar word I had ever heard). The word that forever changed my life. The word that prevents me from ever having a good night's sleep. I then asked the sweet nurse to spell it for me so that I could attempt to start educating myself on what would now consumed my life 24 hours a day, 7 days a week. When Christi had finally received enough morphine that she was able to drift off for a bit, my laptop computer took off searching for "neuroblastoma".

While searching the Internet, someone walked into the room. Assuming it was yet another doctor to meet, I glanced up only to see that the nicely dressed gentleman was one of my OEA friends from Columbus. The hug and friendship Jack shared with me on that very first miserable afternoon was just the beginning of what I would soon experience from dedicated, compassionate, loving friends, family, co-workers, community and strangers who have stood beside us throughout this battle. Here we are, a year later, and still kind folks continue to go out of their way to help The Thomas Team. We are most appreciative and extremely grateful for everyone's prayers, love, support, comfort and willingness to keep marching on beside Christi as she fights for her life in this downright bloody war. Thank you for keeping us going the past 365 days!! We've been so blessed!

A year ago, Shayne and I debated whether to even attempt treatment or not. With such dismal statistics and a five year old daughter in horrendous pain, we weren't sure if it would even be worth it and what her qualify of life would be if we did start the treatment protocol beginning with intensive chemotherapy. We finally agreed to try to treat her thinking that we wouldn't be able to live with ourselves if we didn't at least attempt it. While watching her beautiful blond hair fall out was crushing, so thankful I am that we did give consent to treat. We've had a year that has been terrifying and emotional - every single day; yet, without a doubt it has also been the most memorable year of our lives. Christi (and all of us) has done more living this year than most people will ever do in an entire life time. The goodness of God's people that has been bestowed upon our family, allowing us to do things that we only would have ever read about, have been lovingly shared with us due to friends, family and complete strangers we now call friends. God has blessed us over and over and over and we remain, in some sort of bizarre way, thankful. I won't say that I don't continue to ask, "Why my child?!" And it seems at some point each and every single day I am angry, scared, jealous, sad and frustrated; however, I do remain so thankful to have friends, family and community standing beside us getting us through and I survive by having hope that somehow Christi will be the one to prove the medical community wrong. We've seen a tremendous outpouring of faith, support and concern during past twelve months. We'd never make it without the help and love we've so lovingly received. God has richly blessed us. "Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God." (2 Corinthians 1:3-4) Thank you everyone!

Christi remains feeling well despite the fact that she's getting chemotherapy dumped into her body every day after school. One of the sweet home health care nurses that comes to our house each day said that most people aren't as organized or knowledgeable as we are. "That's scary." was Shayne's response back as he laughed. We are still trying to organize and sort everything back into one household. Every day we tackle a new area of the house or a closet or drawers, yet every day it seems like we just make a bigger mess. (Smile.) I'm thrilled that Joan (my AWESOME and INCREDIBLE mother-in-law, aka Grandma Nee Nee) didn't throw anything away during the eight months she stayed in our home, but I've been on bit of a pitching spree since our arrival back here three weeks ago. Do we really need every art project ever created? (Shayla seems to think YES, WE DO!)

Over the weekend, Shayne helped Christi attempt to ride her bike without training wheels for the very first time. I still remember my Mom and Dad taking me out for that big moment. I just wish I would have had enough guts to tell my father to try to stop me with BOTH hands. I was terrified as he only had one arm stretched out to catch me and I was rolling toward him. I wonder if Christi will remember this big step like I remember mine. Church was joyous. At one point, when Christi and I were singing together, tears simply wouldn't stop flowing as I so enjoying sharing the music and hearing Christi's little voice finally strong enough sing along. And school has been both of our highlights this week. (Of course who wouldn't prefer spending the day in a classroom instead of a hospital room?!!) My kindergarten class is absolutely tremendous as is Christi's class and her wonderful teacher. Shayla is also enjoying preschool back at Betty Jane and I'm so glad she's there while I am at work. A special treat for Shayla and I was going to the fabulous Benner's Ceramic Shop and then baking cookies back at home on Tuesday. Also, this week we finally let the girls pet and hold the new kitten for a little bit now that she's 3 1/2 weeks old. On Tuesday, Christi and I went to a registration meeting to sign her up to be a Brownie Girl Scout and on Wednesday she attended her first CCD class - EVER! (She wasn't permitted to attend school, church or religious education classes last year due to being in isolation. Next week is the benefit concert at St. Mary's Church beginning at 7:00PM. Lisa Rombach (her awesome first grade teacher) will pick Christi up early from CCD and then drive her to St. Mary's to join us for the concert. I did want to let anyone who is interested know that tickets are $8.00 and must be purchased in advance. They will not sell any tickets at the door. (Wonderful Webmaster Eric has all of the info. on Christi's home page in orange if you are interested.) It should be an uplifting evening full of spirituality and one of the sweet organizers, Mike, told me "Singing is like praying twice". (Smile)

With great sadness here on earth I report that a sweet woman I wrote about previously passed into the gates of Heaven. Angel Kim was an adult fighting hard to beat neuroblastoma, yet her disease continued to progress. On Sunday, God opened His arms and welcomed her home to now live in peace - free from pain. This amazing women even earned her Ph.D. while fighting this evil beast. Kim was an inspiration to all and an incredible source of knowledge to us parents since only she could really explain to us what it was like to be receiving treatment. Kim had accepted death and was trying to work and to help others as much as humanly possible. I really appreciate Kim's kindness and help she gave to me personally and I will miss her emails, her listserv posts, as well as checking in with her at MSKCC in NYC. It seems like I just saw her walking out of the elevators arriving to get yet another blood transfusion. And now she's gone. Ugh! I hate this disease! God bless you, Kim!! You've not only earned your Angel wings and a Ph.D. but also the hearts and souls of every one who knew you. You will forever be missed and loved! Please continue to watch over all of our little neuroblastoma Angels as you indicated you would and just as you always did at the hospital. We know they're in good hands since you've come home to join them in God's kingdom. Until we meet again..................

If you haven't checked out our faithful and fabulous web master's link yet, please do so. He really put a lot into our wonderful Labor Day weekend adventure together. Shayne and I were in stitches reading it and checking out the pictures he added. It's fabulous - just like he is! As always, thanks, Eric! http://www.fromthecutewebmaster.com

Today we also reflect and remember 9/11/01. The day that forever changed America. A year later our personal 9/11 took place and forever changed our family. As I reflect and compare, I remain most thankful that we've had this special year together. Time that the loved ones of those who perished on that horrible day never had with their children, spouses and friends. Thank you, God for richly blessing us!! We will continue to live each day to the fullest and to forever give you thanks and praise!!

Take care and thanks for your unconditional love and support over the past 365 days! We love you and appreciate you more than you could ever possibly know! THANKS!

Angela

What's next: We continue to wrestle with our next step. Christi is flourishing with the current treatment; however, we do not know what if any effect it is having on the disease. Our great NY Oncologist grimly reminded us twice this week that we should not be lulled to sleep on this reprieve. The disease WILL break through and it will be difficult to stop if we do not switch therapies. On the other hand, seeking a cure with MIBG in Philly (and a lot of follow up treatment) is a very long shot. No one on earth knows the right answer so our strategy is to maximize her life under this treatment and then shift (hopefully before it is too late) to the potentially curative strategy. CHOP called last week. They have a treatment date starting September 29. We are hoping to schedule for a month later and go in October as originally planned; however, we don't want to have the slots fill up with the 18 kids needed for this phase one experimental study and be left without this treatment option and we want to go before her disease progresses. We appreciate your prayers for guidance and wisdom on what will be best for Christi.

Angela's Quote: "Do what you love and love what you do!"

Christi's Jokes:

What is Buttercup's favorite color? Puuuuuurrple!

What kind of cats like to go bowling? Alley cats!

Why did Buttercup follow the chicken across the road? Because she is a copy-cat!

What is the difference between cats and fleas? Cats can have fleas, but fleas can't have cats.

Why do mother cats get annoyed with their kittens? They overlick them.

MAKE A WISH:
It came as no surprise to family and friends when Christi Thomas announced her wish. The profoundly gifted, just turned six year old, had taught her self to read fluently when she was only four years old and had already skipped a grade in school. Therefore, she was very excited about starting to learn Japanese. Then suddenly she was diagnosed with a rare childhood cancer, along with an extremely poor prognosis - neuroblastoma and her world came crashing to a sudden halt. She was no longer able to learn Japanese, but instead mastered Cancer-language as her world was thrust into immediate cancer treatment.

Over the years, Christi's family has hosted five exchange college students and teachers - all from Japan. And Christi loves Pokemon and Hello Kitty (again - Japanese!) as well as doing origami, calligraphy and having Japanese tea ceremonies. For a little girl who's been to Disneyland and Disney World, she did some research and discovered Disney Sea - the only one in the world was located in Tokyo. When her oncologist suggested to the family that now was the time for her to go on her Make A Wish Trip and said, "What's her wish? I bet it's unique like her." Christi responded with "I want to go to Japan!!!" He shook his head and responded, "That doesn't surprise me at all."

The amazing and talented Make a Wish folks from Northwest Ohio first received the request - a large wish that was under a very tight timeline. Christi was just finishing a Phase One Experimental Study and in a matter of weeks needed to be back to continue more treatment so that her cancer didn't have time to spread. To plan a huge international trip like this one should have been overwhelming, but the Make a Wish staff simply rolled up their sleeves and took immediate action making it happen seemingly overnight.

Because Christi's cancer did not responded to treatment in her home state of Ohio, her medical care was transferred to New York City where the family had resided in the Ronald McDonald House for nearly seven months. After much planning, coordinating and arranging, the New York City Make a Wish volunteers delivered Christi her unbelievable trip of a lifetime - an eight day dream trip to Japan!

The family had goose bumps when the long while limousine pulled up in front of the Ronald McDonald House and drove them to the airport. "I can't believe this." said Christi's little sister. After a flawless flight, the Thomas Team arrived in Tokyo, Japan where yet another Make a Wish Chapter (Tokyo) was waiting to greet and to assist them. "Tears fell out of my eyes knowing that total strangers were so giving of their time to ensure we were safe and settled in this foreign country. Make a Wish is a fabulous organization." said Christi's Mother, Angela. The Make a Wish Greeter escorted them via bus to their first hotel - the gorgeous Sheraton Tokyo Bay overlooking Tokyo Disneyland and Disney Sea.

The following morning, one of their former Japanese teacher friends arrived at the hotel to take them to Sanrio Puroland. Despite fighting jet-lag, Christi and her family had a most enjoyable time in this state-of-the-art indoor amusement park featuring the Thomas girls' favorite cartoon character - Hello Kitty and then enjoyed a traditional Japanese meal sitting on the floor and eating with chopsticks in bustling, downtown Tokyo - the world's largest city.

The second day in Japan, the family of four thoroughly enjoyed what Christi described as Disney's best park yet - Disney Sea. As the evening fireworks streamed down the sky, tears again streamed down Mother Angela's face when she realized that two kind Japanese women standing behind them were holding their umbrellas over her American children to keep them dry while the rain fell upon them. "As I reflected upon the day and the goodness of God's great people helping us in the most difficult days we now live in, it was overwhelming to realize how blessed we've been despite the wicked beast of cancer that thrives inside our beloved little girl." The next day it was off to Tokyo Disneyland where the family enjoyed another fabulous day being together in a beautiful foreign country, riding the rides and not focusing on their daughter's terminal illness and what lie ahead, but instead concentrating on the sisters' beautiful laughter and captivating, endless smiles.

All too soon it was time to depart Tokyo to fly to Sapporo in northern Japan - and home of three of the Thomas Team's former college exchange students. Upon landing, the Thomas Team was greeted by yet a FOURTH Make a Wish Chapter - Sapporo, Japan. Christi and her little sister, Shayla, again performed their bowing and "Knoweichia's" (nice to meet you) to all those waiting to assist the Thomas family.

For their first night in Sapporo, one their former exchange student's family took them to a Japanese style restaurant where they enjoyed another delicious and wonderful Japanese meal. The next day, the Thomas Team was met by yet a third one of their former exchange students who took them via bus to Noboribetsu - home of the Japanese hot springs, known for their healing powers. In Noboribetsu, they had the once-in-a-lifetime experience of bathing in the volcanic hot springs. They stayed at a resort which featured traditional Japanese style hotel rooms; the children loved sleeping on the floor and sitting around the little table drinking tea in their room. They were also fortunate enough to tour the famous bear park as well as Date Jidai Mura - a Japanese cultural park where Christi's powerful and amazing little mind was filled with knowledge and education about Japan's history and heritage.

"We've never seen her so happy." said Christi's father Shayne. "Our sincerest thanks and appreciation to Make a Wish for allowing our family the chance enjoy a fabulous time far, far away from the daily medical treatments that our precious daughter has been subjected to for the past ten months." All too soon, it was time to end Christi's outstanding and incredible dream trip to Japan. Just twenty four hours after arriving back in New York City, Christi was wheeled into the operating room for a life threatening surgery to attempt to remove the tumor from around her heart and along her spine. As the high risk surgery was being conducted, Christi's parents sat in the waiting room putting their photographs into albums, reminiscing about the most wonderful trip one could have ever imagined embarking upon and thanking the Lord for angels on earth - The Make a Wish Foundation, for allowing it all to happen.

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