Over the last few weeks, many people have asked us if we are going to do any fundraising for Kevin’s Bone Marrow Transplant. Well we have decided to do it, not because we want to, but because we need help. If anyone would like to organize a fundraising event, please feel free to do so. Just know that Kevin is expected to go for his transplant relatively soon, so we may not be able to participate, but we will make every effort! =) We have also set up a donation platform at YouCaring.com (Donation button at the end of this post)
As most of you are aware, Kevin was diagnosed with a rare blood and bone marrow cancer, Chronic Myeloid Leukemia (CML), on November 17, 2013. Although his medical team was hopeful that Kevin’s cancer would be treatable and manageable with TKI chemotherapy treatment, his leukemia proved to be resistant. On September 2, 2014 Kevin was told that his bone marrow biopsy revealed a double Ph Chromosome and showed that the leukemia was transitioning to a more aggressive phase. Therefore, Kevin’s only option for survival is a Bone Marrow/Stem Cell Transplant. This means that we need to relocate to Ottawa, Ontario for 4 months. According to everything we have been told, 2 potential donors are being processed and the transplant procedure should start at the end of November or the beginning of December.
An Allogeneic Bone Marrow/Stem Cell Transplant is an INCREDIBLY invasive and high-risk procedure. Ottawa’s transplant program is an outpatient program as much as possible, but Kevin will need to go to the treatment centre 7 days a week for several hours a day for the first 4-6 weeks. If he feels well enough, he goes to the apartment (that we need to rent). If he doesn’t, he is admitted in the hospital. If all goes well, after the 4-6 weeks, he will need to be seen in the treatment centre 1-3 times a week, until they tell him he can come back home to Kingston, which will be about 4 months after the transplant. Therefore we MUST live in Ottawa, close to the hospital for those 4 months…we have no choice. After the 4 months, we will still need to go back to Ottawa possibly several times for appointments or any of medical issues for up to a year or longer.
Since Kevin was diagnosed, we have struggled to make ends meet. Kevin is on LTD benefits through his work insurance program, but only receives 55% of his income and then out of that money we need to pay an insurance premium. As most of you know, when all of this happened, I was enrolled in a self employment program with the government through Employment Insurance and therefore exhausted all of my EI benefit entitlements. Given Kevin’s critical circumstances and the fact that he has suffered for the last year because he has not responded to TKI chemotherapy treatment, I was not able to work outside of the home and therefore remained self employed. While I retain as much work as I can possibly handle, that has not been easy. Let’s just say that if it wasn’t for the amazing support we have received from family and friends, especially Kevin’s parents, we would be living in a van down by the river. But we couldn’t afford a van. 😉
A social worker from the Ottawa Bone Marrow/Stem Cell Transplant Center has contacted us and we discussed the financial support and resources that may be available to us. Because we are “middle class” we do qualify for some assistance, but it will not cover all of the essentials. The reason I am explaining all of this is because disclosure and transparency is extremely important to us. We don’t like to ask for help, but we need it desperately now, more than ever. Here is the lowdown on what we will be faced with for the first 4 months of Kevin’s treatment:
Loss of my income
I will be Kevin’s primary caregiver and because it is an outpatient program, he will need 24 hour care. I won’t be able to commit to anything else for 4 months. I will also need to worry about Alexis and her home schooling.
Housing – Minimum $42.00 / day up to $70.00 / day ($1300 – $2170/month) ***Correction, All the low cost units are taken and probably will not be available for Kevin. WE WILL HAVE TO PAY MIN $1853 for a 1 bedroom with parking…up to $3000/month, unless we can find something private, which is next to impossible because of not knowing exactly when we are going.
There a few options for housing through the BMT program in Ottawa, which may or may not be available when it’s our time to go. However, we have been told what to expect in terms of costs. Please keep in mind that we must still maintain and pay for our mortgage and utilities here at home. We will suspend as much as we can, but we have already minimized our costs of living significantly since Kevin was diagnosed.
Parking -$100/month (average with parking passes)
Gas – $700/month
Because Ottawa offers an outpatient transplant program, we will need to drive and park A LOT! **This also includes getting Lexie back and forth from Kingston to Ottawa every week since we found out she is not permitted in the treatment centre. =(
Meals – $300-$400/month
Drug/Medical Supply costs not covered by insurance – $50-$100 or MORE /month
Tutor for Lexie – $??
As you can see, I’m not even thinking about any extra stuff like Christmas or getting our son/step-son Jamie to and from Halifax for Christmas or the other expenses our immediate family will have to bear to provide much needed support to Kevin during this time. Kevin is an awesome person, husband, step-father, son and brother who is loved very much and he deserves this second chance at life.
Any support you can provide is appreciated. We will keep this fundraiser going for the entire 4 months. Even a dollar a month would be an awesome contribution if that is all you can afford. Another way you can help is by sharing our story with others and on social media. We have quite often donated to other similar fundraisers for people in need who’s stories have touched our hearts.
When you are dealing with Cancer you have 3 choices… Give IN, Give UP or Give it YOUR ALL! Your support will make it easier for Kevin to give it his ALL! Again, we would like to thank everyone for their amazing continued support throughout our journey! I promise to keep the blog updated and keep everyone informed on Kevin’s progress. Our hope is to spend next summer/fall celebrating the AWESOME success of Kevin’s transplant with family and friends and thank most of you in person!
If you have any questions about anything, please do not hesitate to contact me personally. =)