Monday, July 7, 2008

Battling Burkitt's Lymphoma

Tyler is continuing to get stronger. We will be at Children's this week for scans and further tests.

Tyler has been an amazing inspiration in his fight with Burkitt's. Through his experience we have come to know so many others fighting cancer. I think my greatest lesson has been my misconceptions about who gets cancer. Deep down I think I always believed only "others" got cancer. It happens to "other people" in different places, different economic positions, different lifestyles. It does not happen to people like us. I am embarrassed that I was actually surprised by the number of people here who are so much like us. Good strong people who live right and believe in God. But we are not immune from cancer. Cancer is a full believer in Equal Opportunity. It plays no favorites.

One in 300 young people will be diagnosed with cancer before the age of 20. 3,000 die each year. Right now there are currently about 35,000 kids with cancer. They are just like your children and mine.

All cancer is bad, but for obvious reasons we tend to be more aware to the ones fighting Burkitt's. Here are stories of a few people "just like us" who have battled with Burkitt's, and also be a source of encouragement during Tyler's fight.

Nik Sneed
The first person I found with Burkitt's, within weeks of Tyler's diagnosis, was Nik Sneed. He is a year younger than Tyler, and had Burkitt's throughout his bone marrow and spinal fluid. Today he is in remission, healthy, and feeling good. He emailed Tyler, but in those early days it was just too much for Tyler to get back to him. However just knowing there was a survivor out there thinking of him was very helpful. Nik's mom told me in an email, "My best advise is to be strong, believe, and have hope." I wrote those words on my note book that holds all Tyler's medical results.

Jana Slonaker
The same day Tyler was diagnosed, our 19 year old friend Kylee Bornhourst also learned she had cancer. We spent a lot of long nights on J-5 with Kylee and her parents. That is when we learned Jana Slonaker, Kylee's cousin, also had Burkitt's. Now a year in remission, Jana is healthy and doing great (and so is Kylee!). Jana and her family have keep up with Tyler and been a constant source of encouragement. It was so great to see the day Jana posted on her web site: We WON!! We WON!! We WON!!

Brett Workman
Sheryl, Brett's mom, contacted me in November, just days after Tyler was diagnosed. Brett had beaten Burkitt's only weeks earlier, but had just relapsed. We spoke and emailed often. In January Brett was moved from his West Virginia hospital to Children's, where he spent two months only a couple of rooms down from us. Being one of the few teenagers on J-5, we talked often and got to know his entire family. Brett fought hard, and beat Burkitt's a second time. And he fought again when it returned again. He continued to fight even after Dr. Gross gave up on him and tossed him off to hospice. On that dark night when Brett was sent home to hospice, I watched him hold up his head and whisper to a nurse, "Please tell everyone thank you very much for all they have tried to do." And although the damage to his body was too great, he continued to fight anther three weeks. One of Brett's last statements to his mother was, "Everything's going to be alright". In September the first "Brett's Blessing Fund" event, a golf outing, will be held.

AJ Piniewski
AJ reminds me a lot of Tyler. The same passion for sports, and the same passion for life. AJ was diagnosed with Burkitt's in June of last year. AJ attacked Burkitt's with the same passion he approached everything else in life, repeating his favorite saying, "You only get what you give". AJ beat back the cancer, but it came right back, and then back again. AJ's dad, Bob, began posting notes of encouragement to Tyler on this blog soon after AJ passed away. Bob and his sister-in-law then came to support Tyler and I when we were at the MD Anderson Cancer Center in Houston. Bob has now started a petition convince the media to help build awareness of childhood cancer. He has dedicated his life to telling people "how this lying, cheating disease impacts and kills too many of these oh so special kids. To make you think about how much more these kids can give and accomplish if given the chance. To tell you how these kids and families cannot do this alone." In a very short time he already has about 10,000 signatures. Here is the petition:
And this is AJ:

Sinjin Andrukates
Everyone fights cancer differently. Some, like Tyler and AJ, fight like athletes. They have an intent focus on the goal, and block out everything else. They are in the zone and nothing will distract them. Others tend to be more like cheerleaders, gaining strength from giving strength and encouragement to others. Sinjin falls into that second group. It was Brett Workamn who introduced him to us. He is a loud and enthusiastic fighter against his Burkitt's, as well as against the disease in every kid with cancer he has encountered (which are many). Sinjin beat Burkitt's, but it came back within weeks. He is now fighting again. In addition to fighting cancer, his mother has had to fight doctors who wanted to give up on Sinjin. With unbeatable spirit, Sinjin ordered the doctors to change "impossible", to "I'm possible'. Sijin still has a long road to go, but his spirit has never faltered.

Tristan Saputo
I learned of Tristan through his grandmother. He was diagnosed with Burkitt's last summer. By December he had beat it, and was on his way to his Make-A-Wish gift to Disney World. Unfortunately Tristan became ill on the flight there, and was immediately taken to Orlando Hospital. That is when they learned that Burkitt's had relapsed in his central nervous system. He was immediately sent back for treatments, a brain port, and a transplant. Tristan recently posted on AJ's petition site. "This is so huge to me because I lay in the hospital sick from side effects of a bone marrow transplant. My name is Tristan Saputo and I am 12 years old. I had Burkitt's Lymphoma and relapsed in Dec 2007. The cancer came back in my spinal fluid so I had to have a bone marrow transplant. I got baby stem cells from a baby that was born. I am so sick please help me and all the other kids. I just want to go home! I have been in the hospital for almost 52 days. My mom signed me up for experimental treatment of Acute Graph vs. host. I hope this time the medicine will help me feel better. All my friends want me to feel better so I can play with them like I used to. What I really miss is my basketball hoop. "--Tristan the Warrior

Nick Timbrook
Nick was diagnosed about 5 months before Tyler, and we have spent a lot of time on J-5 together. It has been very encouraging watching his progress, constantly being reminded that there is light at the end of the tunnel. As aways, Burkitt's came as a surprise. Last June Nick's mom wrote, "Chris and I headed to the hospital for what was to be a seemingly simple visit - hoping for a quick enema to help what we thought to be an impacted bowel, and off to home again we would go. The x-ray showed a large mass covering the right side of his bowel. After review, the doctors came to tell us that Nicolas had a tumor. They would need to move quick in order to beat this 'tumor' as it appeared to be growing at a quick pace." Today, after a long and courageous fight, Nick is doing great. His mother recently updated their caring bridge site, "Time just seems to be flying by, which is a good thing. We have had several good weeks filled with birthday parties, a good clinic visit, Relay for Life Olentangy, hair cuts, swimming, playing with friends, fishing, feeding ducks/fish and walks (lots of walks)." There is life after cancer. A very wonderful and normal life.

Kevin Seely
Our connection to Kevin comes straight from the song "It's a Small Word". Kevin lives in Australia and had been battling Burkitt's. He emailed me when he came across Tyler's blog. Kevin was looking into different treatment options, and was making his plans to come to Slone-Kettering for his bone marrow transplant. Kevin and I emailed for about two months before I learned that he was not originally from Australia. He was actually born and raised in eastern Pennsylvania, in the same small farming town my in-laws are from. As it all turns out, through the help a couple of marriages, Kevin and Tyler are related (cousins of some type-a couple of times removed). Kevin has meet with Slone-Kettering and, much like Tyler's case, they have now determined that the chemo has been very effective. The bone marrow transplant has been cancelled, and Kevin is working to rebuild his health get get back into life as "normal".

Chase Donnell
I have never meet Chase. But I found his web site very early on in Tyler's fight. He is one of the many people who have taught me how wrong my preconceived ideas were about who could get cancer. So much about this young man and his family reminds me of our family. Much like Tyler, Chase loves his sports. And he took on his fight with Burkitt's like the classic athlete. When Chase was diagnosed 10 months ago, his parents started his web site writing "I always knew that one day Chase would have a Web Site in his honor. Of course I thought it would be a Fan Club Page for his All Star status, playing second base for the Atlanta Braves. Never in my wildest dreams did I think it would be for something like this". In January Chase lost his battle with Burkitt's, but his spirit and fight will never be forgotten. Chase's favorite team was the Predators. He was recently honored at one of their games.

Mason McLeod
Very similar to Tyler's case, Masons parents became worried when his lingering stomach ache when him back from his ball game. They took him to emergency with worries of the appendicitis as the "worst case scenario". Within an hour they were told it may be cancer. Amy, Mason's mom wrote, "I was devastated. It hit me like a ton of bricks. I left the room and just melted in the hallway. Not even an hour later they were moving Mason to a room in the Aflac Cancer Unit here at Children's. Travis and I thought this was just a bad, bad dream. Sunday was a horrible day of waiting and wondering. Monday Mason had a biopsy of the tumor, a bone marrow asp. on both hips, a spinal tap, and a central line put straight into his chest to receive his chemotherapy. Tuesday the pathology reports came back. Yes, he did indeed have Burkittt's Lymphoma." Mason won over Burkitt's. But cancer never plays fair. I just received an update that it appears to have returned. Amy wrote, "I have faith that the Lord will heal my son! He is such a shining star in this world and has so much to give."

1 comment:

Lisa Slonecker said...

Wow--I am in awe. What a collection of stories. Sometimes, I forget that I am a mom of a cancer survivor. I read these stories, and I think, "Gosh, how awful for them. What a time their family must have gone through and are going through." Then, I pause and think--Oh yeah, we're "on the list" too! We have been so blessed and I know Tyler and your family will be too.

It has been so interesting to notice that there are mostly boys with Burkitt's...

What great stories. Thanks for sharing them, Kyle.

Waiting is hard...especially during this last leg as you wait for the test results. You too will soon be able to say "We WON". We just know it!