Feb 23, 2014 | SLMH | 4326 views
Are You The One?
You can be the one match to save a life. Lisa Campbell our WOAA Juvenile Convener and her son Scott need our help.
Here is Scott's story....
Scott has 3 forms of cancer, and we know of no other person in North America who is in this position.
He just turned 20 and this would be his over age year in Juvenile, but he has been medically unable to play for 3 years now.
He was diagnosed with a rare cancer called Mycosis Fungoides in January 2008 after a 6 year battle for a diagnosis. In May 2008 he was subsequently diagnosed with Hodgkin's Lymphoma in the T-cells both MF and Hodgkins are lymphomas. He underwent months of chemo and radiation, and to everyone's surprise returned to hockey in November (the very next day after completing treatment).
By mid 2010 he began showing signs of unwell, and his blood counts were not good with his liver enzymes skyrocketing. Multiple tests were run including more bone marrow biopsies with no significant results though doctors suspected the cancer had returned, in the meantime he began having issues with his eyes and vision. He would wake screaming in pain having lost vision in usually one eye at a time. The epithelial layers of his eyes were peeling off and causing scaring. They believe this to be a complication of his combined cancer but no one could be sure as "they have never seen this before"
By early 2011 we were beginning the transition out of Toronto's Sick Kids as you get kicked out upon turning 18. We were sent to Sunnybrook Hospital where we were reassigned to the very first oncologist we saw January 2, 2008 when referred from London. She was very concerned with the issues and ordered another bone marrow tap, CT and other tests. When the results came back it was found Scott had advanced stage non-hodgkins in the Tcell aka Peripheral T-Cell Lymphoma (PTCL) he began aggressive chemo almost immediately and preparations for a autologous stem cell transplant- this is where he is his own donor. We were all tested for a family match as this would have been preferred, however we had no match. The fact is less than 25% of those needing a transplant will have a family match.
In December 2011 we moved into hospital for the stem cell transplant an anticipated 6 week stay (they let me bring him home December 24th). By the following Fall he was feeling not bad and prepared to go to college in January. The day after he moved to college he started to fail health wise with me rushing back Kitchener-Waterloo to rush him to London. He finished his semester and moved home at the end of April, and was admitted to hospital on the Sunday after coming home.
Tests began again which ultimately showed the cancer had returned PTCL. He stared chemo in July, but it wasn't working and spent the summer in and out of hospital. Labour Day weekend we rushed him in to our local hospital and he was transferred to London, they did not expect him to come home. He did! They started him on a clinical trial chemo which has not been approved in Canada, and he is only one of 3 Canadians to ever get the drug, the first in London. The goal was to get the cancer to shrink to where he could undergo an Allogenic Bone Marrow transplant (this is an unrelated donor) this is his very last option at survival. All was going well as far as results. A donor had been found in the National Registry and he underwent all preparations and was to be admitted January 16th. Less then a week before, we were notified the donor had changed their mind, a decision that may cost Scott his life.. So now we wait!
I am currently working with onematch.ca to organize some local swabbing clinics, however, anyone age 17-35 can go to onematch.ca or blood.ca and fill out the form. They will send peoople a cheek swab kit. which they mail back. It is very easy! If someone is a match for a person on the waiting list (there are close to 1,000 Canadians awaiting a match) they will then undergo a blood test for further typing and testing. If it is determined they are a good match they would then be given a small needle once a day for week. They could do the injection themselves, go to a clinic or home care nursing would come to them. Depending on if its a bone marrow or stem cell match at the end of the week they would then go to the nearest hospital that does collections and if bone marrow they would go under a general and a large needle would retrieve the excess marrow the needles produced there are no stitches and most people return to work the next day with nothing more then some aches. A stem cell is done via blood work and IV.. People need to be sure if they add to the registry they can commit to the process, they can also not donate to a specific person unless its a family match.
You can follow Scott's story and updates at www.caringbridge.org/visit/scottcampbell3 or anyone can contact me directly if they have questions.
Lisa & Scott