Late Saturday night, September 11, 2004
"How in this world can we put a man on the moon, and still have a need for a place like St. Judes?"
A Few Questions by Clay Walker
Other than a "sick" computer, no one else "appears" to be sick and we couldn't be any more pleased about that great blessing! For those of you who may have emailed me, I have had serious problems with the internal modem on my computer which began about the week of August 4th so if I didn't respond, please don't take it personally I most likely did not receive your message. And if you received a message from someone called "3Wmail" that most likely was me! Thanks to the kind and awesome folks at good old Brightnet - our Internet provider since 1995, they told us about using their 3Wmail so that we could obtain our email. Whew! It's not my preference as I really miss my own computer that I feel like I know inside and out, but until the problem is taken care of, it shall continue to be my chosen method and one in which I'm very grateful for. (We do nearly all of our communications with our oncologists via email so we knew we had to get email somehow.) Thanks, Brightnet!! When my laptop is fixed, the twenty plus emails which are stuck in my outbox will hopefully be sent then too.
Well, today was the day we had been dreading. Today was the day that we had put a lot of thought and planning into how it would be spent. Today was the second anniversary of what forever changed our lives. Yes, today was that horrible day two years ago when Christi was diagnosed with neuroblastoma - the worst possible form of childhood cancer. Why is she still here on earth with us? I have absolutely no answers, but I am filled with the most gratitude and appreciation possible that she is still here and she is still bravely fighting this dragon. I shall continue to drink in all of the great times and memories we are making every single day - totally drenching ourselves in rich and fond memories of this precious, miracle child while praying for a cure that has yet to be found for her and so many others bravely fighting against insurmountable odds.
The feelings and strong, range of emotions of this day two years ago come right back and seem like it all happened only yesterday. Intense: fear, sadness, anger, pain, shock, helplessness, etc., etc.are the feelings that are still so vivid of 9/11/02 - and actually those feelings are still there on most days at some level. It's remarkable that one has not yet forgotten the very specific sights and smells of Columbus Children's hospital: the exact rooms where we stood/sat, the phone calls home we made to inform family and to request desperately needed prayers, the cafeteria we tried to eat in, trying to comfort a 40 pound girl curled up in the fetal position due to horrendous pain that would come and go, the sidewalk Shayne and I hugged and cried our eyes out on while Christi was inside the huge, loud MRI machine unable to be sedated because she was so strong and fighting it so bad, the many nurses needed to be called for this strong, fighting (kicking and screaming) little child who would not let them put in the third IV, Father Mark - who always seemed to appear just before the worse news of the day would be delivered to us, the beautiful and caring faces - all trying to help us deal with this crisis just dumped upon our laps like a swift and sudden tornado baring no warning whatsoever - all of the events involved in learning that your child has a malignant cancer and most likely won't be able to survive.
It was on this day two years ago that Christi made the "lovely" beaded necklace that still hangs around my neck every single day - and night. As you may already know, Christi was beading an ABC necklace in the hospital playroom and she tied it upon my neck. I made a promise to her as she did this when I said, "I will take this off when you're cancer is gone, or when it breaks," and so far neither item has happened - little did I know we'd still be fighting cancer two years later. (Prior to going into that playroom, we had just learned that if we agreed to try to treat her, the protocol would last roughly ten months. I never imagined that she -like so many others, would not respond well to treatment and this lifestyle would be endured for years to come. And I guess knowing the stark reality of not being in treatment and those consequences, I'm thrilled to still be in this fight.) I guess I really didn't know anything about cancer, nor about what we were getting into on 9/11/02 - and most likely that is a very good thing. My mind was numb and I felt like I was in such a daze anyway; knowing the truth would have perhaps led to different decisions and with a different decision she would have been buried within weeks like we were told had we not agreed to attempt treatment.
Now I don't even want to know how disgusting and gross this necklace is - having been tied around my neck for two years and never once removed, but like I've told my others who have asked about it, "I made a promise to my little girl and I don't break my promises." Even this summer when I had to have minor surgery myself, I refused to remove it before being wheeled away and therefore I had to sign a release from the hospital for taking this worn, old, necklace full of germs and full of very special meaning, into the operating room with me. (And everything with my surgery turned out just fine praise God!) Needless to say, I've had countless mental images of Christi and I sitting in a doctor's office and the oncologist handing her a big pair of scissors to chop this necklace off, but so far that picture has not been posted on the front of Christi's website, only in the front of my mind. Someday I hope it will be!!! Dear Lord, hear my prayer of Christi being forever cured somehow and living a life of doing good things for others as countless others have done for her.
We had been trying to find a most appropriate thing to do today. I had been asked to speak to a woman's group at a church retreat, yet I declined that sweet invitation knowing the date would be Christi's diagnosis date and I knew how emotionally tough it was last year- this year would certainly be no different. I felt like I would most likely only get up to speak and the tears would start rolling and all would be disappointed - certainly they could find someone better than I! We wanted to do something positive today, something spent together as a family and something that would be helpful to others in need. Well, Shayne has started back with his running again and he had also been looking for a race to train for and to compete in. So when he found a race that would benefit a hospital, we knew exactly what we would be doing!
Shayne had noticed that there was also a "Kiddie Run" (¼ mile for ages 7-8 and 100 yards for Shayla's age division: 4-6 years old) with this fundraising event so with Christi snuggled up beside him about a week ago at Grandma Nee Nee's he told her about it and asked her if she wanted to participate in the run to help raise money for a hospital. "Is it a race?" the competitive little one asked. Knowing that she may feel bad when she didn't win, he explained that it was a "run" and that everyone is a winner and gets a tee shirt to wear, but more importantly the hospital receives money from the runners' entry fees to help do the work that they need to do to make people well. Yes, she said she wanted to do it and she even asked if she could start training too. (What a hoot!)
Therefore, we drove to Cleveland and it worked out great since we also had to pick up Shayne's Mom from the airport tonight too as her visit with Shayne's sister and nephew came to an end. The three athletic members of the family,proudly sporting their "Alex Lemonade" tee shirts,did some warm ups and stretches. Soon it was time for Shayla's little 100 yard race to begin. She came in last place; however, she was the only one who stopped to help the child who fell down. Then it was time for Christi's division for the quarter mile run. We kept telling her she could walk a little bit and then run when she caught her breath. I was so nervous! The bell rang and the seven and eight year olds took off running across the grass still wet from the morning dew. She was near the end of the pack and soon the very last runner in line. Next thing I knew she was walking, but then took off running again. So happy and proud was I when she finished. Tears poured down my cheek as Shayne greeted her at the finish line with a huge hug. Yes she came in last place; however, I'm willing to bet that she was the only little runner who had hemoglobin of less than eleven and who had to finish her chemo before going to the race.
I didn't think she's ever catch her breath as we slowly walked away and she stared down at the medal the Miss Cuyahoga queens had placed around all of the little runners' necks. Finally, it was Daddy's turn. There seemed to be hundreds of runners as the girls and I watched a HUGE pack take off with Shayne starting near the back. Shayne was very easy to spot wearing his bright yellow bandana, with AlexsLemonade.com, printed all over it, on top of his head. I told the girls that Daddy's goal was to finish in about 25 minutes so we could sit in the van and read until then. The time passed quickly and the next thing we knew, there was Daddy coming around the corner. We cheered him on to the finish line as he met his goal. No, Shayne didn't win as Shayla had hoped, but he reassured her that he was the first guy, over two hundred pounds, with brown hair and blue eyes and two daughters named Shayla and Christi, to cross the finish line. That made her feel better. I am so proud of Shayne!! He is just awesome! (I was looking around for a fundraiser that I could participate in, but I didn't see a bake sale going on - hee hee!)
The next stop was for Shayla. Shayla is a HUGE "Balto" fan. This started when we live in NYC and she would play on the "Balto" statue in NYC. Later we came across the videos "Balto" and "Balto II" and she's borrowed them many times over. Upon our return home from NYC she was thrilled to discover the videos at the wonderful Tiffin library. The librarians know what Shayla is looking for when she comes in and this summer when the videos were checked out they provided her with some books about this great true story about the snow dogs helping a disease stricken city in Alaska. Last week one of the great children's librarians told us that Balto is in the Cleveland Museum of Natural History! I couldn't believe it since we were going to Cleveland for the race this weekend anyway. The museum was lovely. As soon as the girls were off exploring an exhibit, Shayne went back to ask where the Balto display was. Imagine our surprise when we were told that Balto was sent away for a little while to be cleaned. Oh, no!!! Shayla handled the news well and later told others that Balto was getting shampooed and that we were going to come back to see him another day. (Whew!) The story of Balto and how the city of Cleveland pulled together to save Balto and many of the sled dogs from the horrible conditions that they were living in and to keep the safely in Ohio is a very touching story.
Next, it was the part of the day that Shayne and I had been most looking forward to! Time to meet up with the Crowley Crew from Cleveland! We first met this wonderful family when we arrived in NYC and their daughter was treating there as well. Olivia was the first real friend Christi ever had and they would call each other to come over (to each other's Ronald McDonald House rooms!) to play. It was just touching. Her parents and little sister the sweetest folks and we could relate to them so well. We were saddened (yet happy for them) when they returned to Ohio about a month after we arrived in NYC. And we were devastated, about a year ago, to learn that Olivia's nasty cancer (Ewings Sarcoma) had come back and that treatment trials were underway for this beautiful little friend. She has been through a host of nasty treatments since that time and still her disease is not responding. As I watched the girls play at the restaurant, it was incomprehensible how a disease can be so ugly and a little girl so beautiful. Olivia is now 9 and Christi and Olivia played very well together; it was very sweet knowing how much they share yet sickening knowing the reality of all of that too. Shayne and I reminisced about the girls playing Barbies together on their hospital room floor after Olivia's Mom put down a sheet for them. Her parents were still the same loving, compassion, intelligent and kind folks that we had remembered from our early NYC days. Please keep Olivia and her family in your prayers as treatment options are severely limited. www.OliviaCrowley.com
Our last stop was to the Cleveland Airport to bring Shayne's Mom home. It seemed odd to be walking into an airport knowing we weren't going anywhere. Happy we were to all hug Grandma Nee Nee and to have Shayne carry her big suitcase to the van.
On the home front, all has been going extremely well. School is going great for all three of us girls. One day Shayla showed me a book she could "read" at school. I asked her what she wanted to do to celebrate and she said she wanted to go to the library to read it to the librarian. So we did! (And THREE sweet librarians actually listed to her "read" her prized book.) CCD (religion classes) and ballet classes also started back this week. Despite it all, things seem very normal right now.
On the medical front, Christi's blood counts have shown great improvement from this reduced dosage of chemotherapy. She was also seen by a Toledo Mercy's oncologist, on Wednesday after school. Her blood counts were much better. (4.4 white, 10.7 hgb., 111 platelets with an ANC of 2,400.) We hope the trend continues and that her cancer is still held back even though the chemo dosage has been lowered.
The "little" (ha!) cellular issue I had been concerned about when I received the written reports, also concerned Shayne very much when he read the results after his return from Madison, Wisconsin. After email correspondences with Dr. Maris back in Philadelphia, we understand the very seriousness of this matter; I was correct in being concerned. (I am so glad we have always gotten the black and white printed reports from all of her test scans.) It appears this chemo (ABT 751 - which I hope when it gets named will be called "All Better Thomas" (hee hee!) is hitting her bone marrow harder than anyone had thought. Her cellular level is nearly as low as it was when her stem cells had to be transplanted back into her on Jan. 2nd of this year. We're glad we have more stem cells "in the freezer"; however, we want to save them for later so now our prayer request is that this lower dosage helps to reverse this trend while still holding her cancer steady. The test results, which will be conducted in mid-October when Shayne takes her back to CHOP, should give us the answers to all of these questions. (She should have a cellular level in her marrow of about 70-80% and hers is now down to just 10% - yikes! It's gone lower with each round of ABT.) We fully understand that she is a very "heavily treated" child and along with that most times the bone marrow simply gives out after so much treatment and no more treatment can be pursued. Things never seem to get any easier.
It is with great excitement and pride that I share that Christi AND Shayla will be receiving the Red Cross's Top Honor at their upcoming meeting on Tuesday. The girls have been selected to receive the "Clara Barton Award" (Clara was a little nurse to her brother when she was only 8 years old - very fitting for little Shayla too, eh?) The Thomas Team, along with our parents, will be attending the awards ceremony in Fremont on September 14h. Thank you to the Red Cross!
On Saturday the 18th, Christi will be helping Hospice with their annual Duck Race and she will also have her lemonade stand up to hopefully send a few more dollars to Alex's Fund - raising money for pediatric cancer research one cup at a time. Her CureSearch cards will also be available if anyone is interested. They are $10.00 for a box of ten cards and they have Christi's art on the front and a picture of her and Buttercup on the back. (Buttercup's doing just fine too, just getting a bit more "plump" these days. She sleeps at Christi's feet nearly every night. It's precious!)
Tiffin, Ohio-Community Hospice Care will be conducting their third annual "Hospice Waddle." Rubber duckies will be waddling down the Sandusky River on Saturday, September 18, 2004 at 5:00pm in conjunction with the Heritage Festival. Only 1500 ducks will be sold. They will be sold for $10.00 each with a chance to win $5000.00, $1,000 or $500.00. If you would like to reserve a special number please call the Community Hospice Care office at 419-447-4040 or 1-800-834-8100. The Thomas Team will be on hand to assist with this wonderful fundraiser to benefit Hospice.
Last week Shayne had a long telephone conversation (and many emails) with Texas Children's Dr. Heidi Russell about the vaccine that is now going full steam ahead for little Christi. (Praise God!! We may need this back up plan sooner than we thought!) There will be 18 participants in the study and beautiful and brilliant Dr. Russell went over all of the details and answered all of Shayne's questions about the vaccine that is currently being developed especially for her. (Grow, babies, grow!! Dear Texas scientists, please get her DNA reprogrammed just right so that she can fight those wicked cells off on her own after you inject her with your genetically reprogrammed stuff.) We haven't decided even if we will be doing this or not, but the oncologist emailed the consent form - all seven pages of warnings and heeds, and I believe it will be pursued at some point in the future. The wonderful Dr. Maris has been involved in all of this as well. So prepare, Houston - it is likely that we may be heading your way down the road sometime to pursue this vaccine trial, especially if the ABT isn't going to work any longer. We pray that the scientists are able to grow her cells over the next few months. They are not always successful.
Without a doubt, there were other children around the world who were in strange, scary hospitals with foreign smells and lighting, located in cities far from their homes, who were also diagnosed with cancer today. Their parents too will make decisions no parents should ever have to make; I just pray that they will be surrounded by "angels on earth" who have gotten us through 730 days and nights of this journey. I vividly remember Shayne and I deciding whether we should even attempt to treat Christi when it appeared that all odds were stacked against her or if we should just let her go Home in the weeks to come. Due to the horrible odds, we didn't have to treat her; the state would not have intervened if we had chosen not to try; however, so glad am I that we did! At that point in my mind two years ago I could only justify it by saying, "She might as well go down fighting." True, she's not cured, doesn't have a good chance of ever being cured, and has what a Texas oncologist recently told us, "exuberantly high" chance of getting a second cancer due to all of the cytoxin and etoposide chemos she's had, not to mention all of the other side effects and unknown late long term effects as well, BUT all that horror aside - she has truly lived like no other and has had a tremendously good qualify of life. I know only those directly involved can make those decisions, but I am so thankful that God has lead us to the decisions we've come to and has lead us to the places He has. Thank you, Lord! Thank you Angels on earth for holding our hands and praying for us every step of the way.
Today we are thankful for two years with Christi. Two years that we were told we wouldn't have. Today we also pause to reflect, remember and to pray for all of the victims and their families of the horrific 9/11/01 tragedy.
Ironically enough, September is National Childhood Cancer Awareness month. I think this journal entry's contents and the fact that so many of you sweet folks have followed Christi's journey for two long, eventful years is enough said. Thank you! May there someday be a cure for these kids and adults!
With so much thanks and gratitude and with so many tears shed today for a loss of innocence and normal childhood for two precious daughters,
Christ's Joke: A man went into the restaurant and asked, "Do you serve crabs here?" and the waiter responded, "Yes. We serve everyone."
Christi's Quote of the week: "Eat your veggies they make you grow up unless you don't like them then you'll throw up!"
*Tuesday, September 14-with unbelievable kindness of the Red Cross, the girls will be receiving the Red Cross's Top Honor - the Clara Barton Award.
*Saturday, September 18th Christi will be assisting Hospice at their annual Duck Race.
*Tuesday, September 21st: Christi will be the special guest of honor and will be reading "Alex and the Amazing Lemonade Stand" written by the Scotts to a class of Education Majors at Heidelberg College. She'll then be helping to "fill the cups" at the lemonade stand which will be set up on the beautiful college campus here in Tiffin. For anyone interesting in stopping by, the stand will be on campus from 11:00 - 1:00 PM and will be manned by the great folks and students in the Education Department. Our deepest thanks to Rush Printing - downtown Tiffin, for donating absolutely awesome "Christi & Alex's Lemonade Stand" tee shirts for the volunteers to wear on this special day. One of my "Berg professor friends emailed and summed it up best when she said, "God's love is all over this! We are so excited about this!" All monies will be sent to Alex's Lemonade Fund - still trying to reach that $1 million dollar goal Alex set before she died. Wouldn-t it be great if the check coming from the Heidelberg stand made that goal?! Nearly nothing would make me happier!
Amazing girl, amazing event, amazing goal
An amazing event will take place on Tuesday, Sept. 21, from 11 a.m.-1 p.m. An Amazing Lemonade Stand will be set up on the lawn in front of the Lavely-Shedenhelm Education Center and manned by 7-year-old Christi Thomas, who was diagnosed with neuroblastoma. Christi, who lives in Republic, will serve lemonade to help fund the fight against pediatric cancer.
Christi's good friend, Alex Scott, began the lemonade stand project and had successfully raised $900,000 before earning her angel wings in early August. Christi now continues this tradition in Alex's memory.
Heidelberg's education department is sponsoring this event through the efforts in Lori Grine and Mary Jo SanGregory's EDU 344/345 class. Christi will meet with the class before the lemonade stand opens.
The campus is invited to come enjoy a glass of lemonade and help Christi in her mission. Donations will be accepted.
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Shayne & Angela Thomas: email@example.com