Christian Church in the Upper Midwest

Camp Offering 2008

The Champion Story

Hi, I’d like to take this opportunity to tell you all about our Daughter Alex. She was diagnosed with Lymphoma in December of 2006 and is currently undergoing treatment at University of Iowa Children’s Hospital in Iowa City. So let me start with a little about ourselves first… My wife Joni and I have been married for 19 years and have 3 daughters. We live in Altoona, and we both grew up in the Southeast Polk School District. Alex is 10 years old and has two sisters Paige and Danielle, our story starts not with her diagnoses of Lymphoma, but with her sister Paige. When Paige was about two years old Joni and I noticed that Paige had trouble standing in one place, and was always moving her feet. When she was in preschool we then began a series of test to find a diagnoses, unfortunately not an easy task. After trying a local neurologist who told us “that’s just the way she is” we ended up at Mayo Clinic in Rochester Minnesota where we got a diagnoses of Ataxia Telangactasia, a rare, progressive, genetic disorder. When we ask for information on A-T, we were told they didn’t have anything and our best resources were probably on the internet, where we found the A-T children project. Which was very helpful to us. Of coarse by this time Paige was ten, and we already had two more daughters, Danielle and Alex. It had skipped Dani but Alex was affected.

One of the reasons that the doctors had so much trouble finding a diagnoses was that normally their immune system is affected, but with Paige and Alex that is not the case. This fact gave us the false sense of security in thinking that the cancer risk would be lower. We were wrong…. But more on that later. At this point we decided to go to the clinic in Iowa City, a move we are very thankful we made. Not only is it closer to home, but A-T is very rare and only about 300-400 known cases are in US. at any given time, and 7 of them go to that clinic. Of coarse 2 of them are ours, but well… We started seeing a neurologist Dr. Mathews, who through the coarse of our visits had the foresight to recommend that we see an oncologist. So last summer we met with Dr. Goldman, which proved to be a fateful move.

In December of 2006, about a week before Christmas we had noticed that her neck looked kind of swollen, which was not that noticeable at first because she had shoulder length hair at the time. When Joni pulled her hair back she could see that she had bumps on both sides of her neck, mostly on the right side.. So being Sunday night we waited until Monday morning and took her to the urgent care walk-in clinic. She had ear infection in her right ear so they thought that maybe the infection had just gone down into her neck, but the physician was a little bothered by how they were down her collarbone.. She was given antibiotics and a shot, then told to come back and see her in 24 hours which we did.. It didn’t look any better and she seemed concerned so she sent us directly to an ENT who drew blood and put her on a Prednasone and told us to come back on Thursday, and if it didn’t look better he would biopsy it.. Well on Thursday it really didn’t look better so on Friday, the day before the holiday weekend, we went in for a biopsy where they took a lymph node out of her neck. The initial results showed it not being A-typical for lymphoma (of course we don’t seem to do, or have anything that is typical) they told us it didn’t look like it, and sent us home. Then the Dr. called us again to come in for more blood work.. They ended up sending it out, which of course with Christmas being on Monday meant waiting for Tuesday. It was kind of a stressful Christmas, to say the least. Come Tuesday, we got the news that, in fact, it was T-cell Lymphoblastic Lymphoma... Then we had to make the decision about where we wanted to go for treatment. We had already seen Dr. Goldman last summer and with the complications from A-T That’s where we felt we needed to be.

Later that day one of the Oncologist called from Iowa City and told us “It’s not an emergency, but can you come here first thing tomorrow" Thus started our countless journeys to Iowa City. After consulting with Dr. Goldman and his staff he did a lot of research for protocols for kids with AT and T-cell Lymphoblastic Lymphoma, looking for a protocol. Unfortunately he found no other documented cases. After talking to doctors from all over the world he took a protocol and modified it to hopefully not be too toxic for Alex. It’s been a rough road from infections and fever, to near renal failure, to a rash so bad she pealed from head to toe.

Through all of this we have learned some very important things, first and foremost is, focus on today, don’t worry too much about tomorrow… you’ll drive yourself crazy. Second…We are Not Alone…our friends and family have really come through for us, and we don’t know how we do this without them. We have more friends then we ever dreamed of. During our first stay at Ronald McDonald house, I set up a care page online for Alex….we have had more then 42,000 hits on our page, and is a source of strength and inspiration for us…one thing I didn’t realize in the beginning is the sense of community among all of the patients and their families, we have made some good friends, and I know that this is just the beginning… And most of all Humility, I’ve always enjoyed helping others, and had some great experiences in the past with this.. But I quickly learned that being on the other side of things is much harder than I thought, and I don’t know if I could ever get used to being on this side of things. I’ve had friends pay for our gas, bring us food, and organize fundraisers. The list goes on. We appreciate it more than they will ever know, and will never forget all that has been done for us.

If you would like, you can follow Alex’s journey @ carepages.com site name AlexChampion