LIGHT THE NIGHT YEAR 3 | TEAM XAV
Wow! It is hard to believe that we are participating in our 3rd Light The Night. It still feels surreal that that we have become part of the Blood Cancer community. In just three years, there have been such extreme highs and lows I never thought that we would be faced with. Putting “pen to paper” to update our Team Xav supporters has not been easy. The words never seem right, and there is always the second-guessing of “are we sharing too much?”
For 19 years, I would always say how fortunate we are that we have four healthy children, and that this is the true meaning of wealth. It was only when Xav began the fight for his life that we have experienced a range of emotions on a still daily basis; fear, sadness, anger and hope. Our experiences the last 3years have taught us to value each day; even the not so good ones.
Lots has happened in the last year and I’ll do my best to bring Team Xav up to speed:
Since Xavier received his allogenic stem cell transplant two years ago due to his diagnosis of Acute Lymphoblastic Philadelphia-Like Leukemia in November 2019 he has developed Chronic Graft vs Host Disease (GvHD). He needed a transplant because the type of Leukemia he had is rare and aggressive, with transplant being the only option for long term survival. This was our light at the end of the tunnel, and we are so happy and thankful that the transplant was successful! As with all good, there is also the challenges. The development of GvHD is something that we were warned about, but the extent and severity of GvHD was hard to understand until Xav began to experience life-limiting and life-affecting symptoms.
The best way to describe GvHD is when the donor cells (his sister Zoe’s) recognize the host (Xav’s body) as foreign and begin to attack and damage the body. This reaction can be mild to severe and sadly Xav is experiencing severe side effects.
Recently the GvHD has had an impact on his daily life. There are some days where getting out of a bed is a challenge because of constant pain. Sleep is difficult, and the frustration of not being able to live the life of a healthy 22-year-old is heartbreaking to see. He has never asked “why me?” or complains about what he is going through. But as a mother, I know when he is in pain, I know when he has had a rough night. When I ask, he always answers that “everything is good.”
He is brave and thoughtful, trying to shelter his family from the worst days. This leads me to constantly check the online portal, read doctors reports, Google any new stats, and to see if any new research has developed. Should I do this? No. The stats are still not on our side, but we continue to hope that new research develops and new therapies become available. We continue to share our story to raise awareness and in the hopes of inspiring others to join our battle with Team Xav.
Treating GvHD is just as much an art as it is a science. In the past few months, Xav’s symptoms have increased in severity. He experiences painful tightening of the skin all over his body; resulting in the development of scar tissue within his muscles and joints making it feel as if his skin is turning to cement. This makes movement difficult. All movement, all the time is restricted and painful. Xav’s transplant team has tried many (and I mean many) things. He is on multiple therapies including pain killers, immune-suppressants, and a special access drug that has to be approved through Health Canada. A final option for treatment, is a treatment called Extracorporeal Photopheresis (ECP). This will require him to make the trip down to Princess Margaret twice a week. During this treatment, blood is taken from his body and radiated. This destroys one type of white blood cell which is a contributing factor to GvHD. The blood is then returned to Xav’s body. This process takes a few hours each time. The goal of ECP is to stop the progression of the GvHD, and to hopefully reverse the symptoms Xav is experiencing. Knowing that he will never be back to how he was before is still something that is hard to come to terms with.
Navigating life after transplant is an up-hill battle, and with the added risk of Covid, it sometimes feels as if the hill keeps getting steeper to climb. Not being able to see friends is hard at any age, but add in being 22 when life should be filled with friends and fun, being immune compromised is a lonely experience. Xavier’s girlfriend Alexa has been a constant support for him, seeing him through his worst days and celebrating the good. Xav’s brothers Andrew and Zach have also made the decision to keep their brother safe by foregoing seeing friends and being in a crowd. They have seen the change in Xav and want to do everything that they can to try and keep their brother safe. Zoe has moved a few hours away from home but that does not take away her worry. She calls daily with phone calls asking how Xav is doing and how he is feeling.
When questioned as to why we do what we do, or why we continue to social distance, it is hard to explain to others; this is one of those situations where you unfortunately have to live it to be able to fully understand it. My thought and worry is for Xav’s safety and for him to survive. We will do all we can, without second thinking if we know that we can lower his risk of infection in any way.
Three years ago, I would never have known or imagined the experience of having a sick child until I began to walk in these shoes; and while I wish I could trade shoes with someone, I would never want another child or family to have to go through this. Light the Night and the Leukemia and Lymphoma Society of Canada (LLSC) strive to advance research to one day bring an end to blood cancers. The LLSC has been an integral in the fight against blood cancers. The LLSC funds research for the prevention and treatment of blood cancers while providing supports for patients and families, especially when they hear the blood curdling words, “I am so sorry. You have cancer. We are transferring you to Princess Margaret in the morning.”
We hope the ECP treatment will work, but as we are constantly reminded, there is no guarantee. It is like playing the lottery; hoping and praying that Xav is one of the lucky ones. For this reason, we continue to be motivated in supporting the LLSC and Light The Night because we continue to hope for more options to treat GvHD and for more awareness about life after transplant.
We continue to share our story with Team Xav, because of the impact that we have had together. In the last two years, we have raised over $20,000 to support research and funding for the LLSC in finding a cure for blood cancers! None of this would be possible without YOU. We can never say thank-you enough for the support you have given to Team Xav over the past 2 years.
Each one of us can be a life-saver in so many ways. This year, we are again asking you to come along on the journey of supporting Team Xav. Supporting Team Xav can happen in so many ways! Donations are greatly appreciated and needed, but joining Team Xav in other ways also adds in our fight against blood cancers. Share our story, invite others to be part of Team Xav, donate blood/platelets, and put your name on the stem cell registry. You can save a life in more ways than you will ever know. If we can each do one thing to help find a cure, one less family will go through this experience.
Again, we must thank you for reading, sharing, and being part of our journey. We hope that you can support Team Xav and to shine a light forward, imagining a future without blood cancers!
Together we can do so much,
Ginetta and Team Xav
And as Xav says … Let’s Bounce!
Team Xav Recipient of the 2022 Leukemia & Lymphoma Society of Canada Joanne Archibald Award