It’s that time of year again! Time to provide our yearly update to Team Xav! It is incredibly hard to believe that we are entering into our 5th year of supporting The Leukemia and Lymphoma Society Light the Night. And we will continue to say it every year, we are incredibly happy and thankful for your support, but we wish we never had to come together under these circumstances.
We are thankful everyday that Xav is no longer undergoing Leukemia treatments, but he continues treatment for Chronic Graft vs Host disease (CGvHD). CGvHD is a side effect from his stem cell transplant where the donor cells attack their new environment. This can affect any part of the body to varying degrees of intensity. Xav’s is centered in his lungs, skin and muscles which can make day to day tasks difficult due to intense body cramping, becoming quickly out of breath and extreme fatigue. Some days are better than others. Before the transplant, the medical team discussed the possibility of GvHD, but it is impossible to fully comprehend the all-encompassing nature of this disease. Chemotherapy drugs have been replaced with anti-rejection drugs; each with their own set of risks that are too scary to read sometimes.
Outside of the blood cancer community, gvhd is not a well-known disease, and because of this lack of awareness there is an even greater need for us to share our story with you. It is with increased awareness and support that we hope more funding for research can be available as well as an increase understanding that treatment does not end after the transplant. While those amazing words “you are cancer free” echo in our heads, it is quickly followed up with new treatment plans and a never-ending list of side effects and limitations that Xav is faced with.
As a mother, I never imagined that my son would have to experience more pain in his 24 years than many do in a lifetime. I wish I could trade places with him, even just for a day so that I can have a better understanding of his new reality and for him to have the freedom to live life that he so deserves. Even on his worst days, Xavier continues to exemplify extreme strength, to a level that I did not know was possible. He never complains, or questions why he has to go through this hell.
Over the last 4 years, together we have raised $40,000! Without YOU, this would not be possible. Every dollar helps to bring us one small step closer to a future without blood cancers, and a future where Xav and other survivors can live a life free from pain and limitations. We ask if you would once again donate in any capacity to Team Xav. If you are unable to donate, we would love for you to donate blood, or register to become a stem cell donor. Xavier and thousands of other patients would not be here today without blood products who have been freely donated by so many people. No amount of money is too small! Team Xav, and the thousands of families like ours appreciate every dollar contributed towards the hope of a healthier future.
We’re looking forward to a great Light the Night season! We are once again bringing back our raffle! Say tuned for news regarding some amazing prizes!!
We will continue to provide updates on Xav over the next few months!
Once again, on behalf of my family and Team Xav … Thank You. Your support since diagnosis and every step along the way means more than you will ever know.
Ginetta & Team Xav
Together we can do so much, we are Forever Thankful
Raffle Prizes:
Kroma Salon - Three Blowout Services to Kroma Salon
Arcadia Earth – Four Admission tickets
Il gatto e la volpe – Gift Certificate $100
Timber Creek – Family Pass (2adults, 2 children)
Lula Lounge – Friday Cuban night for four
Toronto Adventures – 2 hour rental -2 seater canoe for 2025 season
Toronto Maple Leafs vs Chicago Black Hawks, (Dec 2, Section 119, Row 22) donated by Team Xav
Kroma Salon - Soma Shower Filter
Zitto Zitto Taverna - Gift Certificate $100
For those who may be new to our journey, below you can read our story as to why Light the Night has become an important and vital cause for our family, from diagnosis…
Year One participating in the LIGHT THE NIGHT: In early November 2019, our son Xavier, at 19 years old was diagnosed with a rare genetic mutation of Philadelphia Like Acute Lymphoblastic Leukemia. The impact of donations on research and the courage and hope of the Blood Cancer community has shown us so much.Weeks before Xav’s diagnosis, he was not feeling well and was experiencing flu-like symptoms with extreme back and shoulder pain. After countless visits to the walk-in clinic, on the evening of November 5th, Xavier said he needed to go to the hospital because he was unable to take a deep breath because the pain was unbearable. Little did we know that in the next few hours, his life would change in a way no one expected.In true Xavier fashion, he did not want me to have to wait at the hospital for hours, so my husband Vince went with him. I remember texting Vince and asking for updates, and being told that he was seen by a doctor, tests were being run and that they were planning to admit him. No one was really giving any clear answers except that there were some things on the blood tests that were concerning.At this point, Zoe (our daughter) was going to drop me off at the hospital to stay with Xavier and Vince and she would go back home to stay with our other two sons. On the way, Vince calls and speaks with Zoe saying that he needed to tell me something but that I needed to stay calm. The blood work and symptoms showed Leukemia. All I could think of was “WHAT?” Did I understand what I just heard? Zoe immediately called my siblings to let them know what was going on. I asked Zoe to not jump to the worst - I was not convinced … something got mixed up, Vince misunderstood - This was not happening to my son.At the hospital, I went into Xav’s room, and the doctor came in and confirmed it was Leukemia. As this was happening the Dr. was apologizing many times saying “I am so sorry, I am so sorry”. I look over to Xav and see that he is trying to process what is happening. As a parent I keep asking myself “Why? Why Xav, and why not me? He is young and has his life ahead of him.” Zoe made her way home and called my parents and sister to come to the house to be with her and our other sons, Andrew and Zachary while my brother came to the hospital.It was around 2am when the oncologist saw Xav. She started chemo, and arrangements were made for Xav to be transferred to the Princess Margaret Cancer Centre (PMH) for a 9am clinic appointment and to be admitted.The ambulance came and transported Xav and I to PMH. Once we arrived, there were many more questions, much more blood work and his first experience with a bone marrow biopsy (that took many attempts). There was a long day of visits from multiple members of his team; nurses, doctors, pharmacists, and social workers. There were more forms to be signed, more questions, and difficult conversations I never thought I would have with my 19-year-old son and holding back many tears.Xavier was originally diagnosed with Acute Lymphoblastic Leukemia (ALL) and would be following a pediatric treatment We were told that an intense pediatric regime was the best course of action. Xavier was told that his life was on pause for the next two years and his only focus was to fight this and to get healthy. So, Xavier started with the Induction phase of treatment which consisted of 30 days of intense chemotherapy and lumbar punctures as an in-patient.As any parent in this situation, overnight I started to learn about this disease. We were able to gain access to the online patient portal where we could log in and see any results from vital signs, blood tests and doctors’ notes. Needless to say, it is still one of my most frequently visited pages.About 2 weeks into treatment, a test had come back with a further diagnosis. Xavier has the Philadelphia-like chromosome which now changed things. He is now considered high risk and told that it was almost certain to return within 5 years. It was explained to us that this chromosome has only been discovered in the last few years and that the road ahead would mostly be a trial. This means now researching and trying to find something positive, but with the lack of research and data, the 5-year survival rate for Philadelphia-like is about 25%. His oncologist added an additional drug to his already intense chemo in the hopes of attacking the cancer with all available therapies. Not all the doctors on the team agreed with this, however, we are happy that his oncologist advocated for Xavier.Xavier celebrated his 20th birthday while completing in-patient treatment, and in early December, he was released from the hospital, and we were faced with more decisions to make.With the new additional diagnosis, he was now a candidate for an allogeneic stem cell (or bone marrow) transplant to give Xav a 50% survival rate. The decision was ultimately Xavier’s to make; we could only be open to his conversations and support him along the way. He went from trying to decide what to do on the weekend to which treatment to follow to save his life. All I could think about was how my child was suddenly thrust into making life or death decisions and I had no power to help him.Xavier decided to proceed with the transplant, and our children were tested to see if they would be suitable matches. Our sons, Andrew and Zachary were matched at 6/10, and I still remember the phone call I received from Zoe with a trembling voice telling me that she was a 10/10 match for Xav!!The team moved quickly, and the transplant date was set for February 21. He was going to have a new birthday! Xavier was told about the side effects and possible reactions that can happen during the transplant process. Then, on February 15, Xavier was once again an in-patient at PMH. He was to start 5 days of intense chemotherapy and multiple doses of full body radiation. With age on his side, the team decided to give the maximum doses of chemotherapy and radiation to ensure all his cells were destroyed so that his body would be a welcoming home for Zoe’s cells soon to come.Leading up to transplant day was not easy on Xav. There were still more treatments, blood and platelet transfusions, hospital stays, infections which meant quarantining in his hospital room along with hair and weight loss.The biggest fear is the unknown. During a hospital stay, one of his nurses was talking about what will happen during the transplant. Xavier asked what the survival rate was. I could feel the blood rushing through my body. The nurse took a deep breath, looked down and said to him, “you know what, we are not going to think about that, but you need to know that there is so much research being done and there are so many treatments being discovered still.” I had to put my head down so Xav would not see my pain as I held back tears.During his transplant, Xavier was in the hospital for 5 difficult weeks. These weeks included more infections, unknown causes for swelling, painful mucositis (mouth sores) so he could not eat, a blood clot in the brain, quarantine and then as COVID-19 hit a no visitor policy was enacted hospital wide. More meds, more painkillers, more not feeling good and more hidden tears in the hallway outside of his room.Finally, Xavier was able to leave the hospital and continue the marathon to recovery. Now there is a new set of side effects to deal with, mainly now the risk of infection (much more heightened due to COVID), and graft vs host disease (Zoe’s donor cells are realizing they aren’t in her body and are attacking Xav’s). The team is working on ways to try and lessen this pain.At the one-year mark since diagnosis and were still many difficult painful days for Xavier. In true Xavier fashion, when asked how he’s feeling, he swallows and says “good”. We are forever grateful to my parents and sister - where he stayed for 10 months when he was not in the hospital. He had 24/7 care, and we knew that this was a safe place during the COVID pandemic.We are thankful to all our families who have supported us along the way. We are incredibly grateful that Xavier has such amazing friends who would visit him in the hospital and bring him food. He greatly looked forward to those visits!We are forever grateful to the doctors and nurses who advocated and held Xavier up on this journey and who continue to. Thank you is not enough for the research teams and donors who have given our son and so many others another chance at life. Thank you for spending your time and money on helping to envision a future without blood cancer.There is still much more work to be done and the only way that the research labs can continue their fight is through funding and donations. We hope to raise funds to help envision a world without blood cancer.Year Two participating in the LIGHT THE NIGHT: Lots has been going on – some good and some challenging. Xavier continues to be cancer free (!!), but one of the difficult things about being post-transplant is that many assume that he is back to normal, and that life can just “pick up where we left off”, or he is healthy. I wish we could say this is the case, but it has been a challenge, and normal will always be a “new normal” for us. The precautions, dealing with long term side effects, and risk of relapse never really goes away.Post-transplant, Xav has been at risk for various infections from just daily living. What may seem like “not a big deal” for others is deadly for our family and community. Anytime Xav is not feeling well, a prompt call to Princess Margaret is made so the team can assess him. With his fragile immune system, a common cold can turn serious quickly. This leaves us in fear every time he sleeps in too late or says that something feels “off”. This could mean an extended hospital stay and toeing the line with death. It’s hard for us to think about these things, let alone write about. However, we continue to try and be open and honest with our Light the Night Family.For transplant patients, COVID-19 is another deadly worry, on top of our already lengthy list of daily dangers, and with his fragile immune system, we know that Xav is at an even higher risk for complications if he does contract the virus. This means that while the world went into lock-down, we went into lockdown x 10. We knew that as a family, extra precautions had to be taken regarding; who we saw, our interactions with the outside world, and how we would reintegrate back into the world once it was deemed as safe. We knew that if we got lazy with precautions, the end result could be irreversible. When it was our turn for the vaccine, we were first in line because we knew that this was one way we could again help protect Xav.Xav now battles chronic graft vs host disease (GVHD). This is when the donor cells (in our case, his sister Zoe’s) attack their host environment (Xav). They were a 10/10 match, but the way it was best described as – Zoe is a girl, and Xav is a boy – there will be differences in their cells and the way that their immune systems will match with each other. GVHD brings a different list of worries, symptoms, and long-term side effects that we are learning to navigate. The long sleepless nights really never go away.COVID-19 continued to force Xav to grow up and to learn how to navigate a complicated but lifesaving health care system. He continues to go bi-weekly to the Princess Margaret where he is poked multiple times each appointment, and visits with his transplant team. His team continues to help support him in life after transplant - and at times this has been hard. Year after transplant we had a scare where there was an abnormal growth on Xav’s tongue. One of the side effects from the radiation treatment he had to prepare him for transplant is oral cancer. The results from the biopsy seemed to take forever to come in. There were many sleepless nights and quiet crying during the day when my mind would wander. We just went through hell, why is this happening again? Thankfully, the biopsy came back negative! The worry about his future is something that never goes away, and neither do the side effects. The transplant saved his life, but with the long list of side effects it is hard not to worry about his future. Will he develop another cancer from the transplant? Will he ever have a life without worry? Will his friends understand why he needs to take these precautions? Will they leave him behind?After the transplant, we were hopeful that the “hard part was over”, but GVHD has had other plans for Xavier. GVHD can affect any body system and Xavier has had GVHD in a few areas. His oral GVHD has caused him to have sores in his mouth and down his esophagus. This has made it almost impossible to eat and has resulted in significant weight loss. We have seen Xavier go from having a big healthy appetite, to cautiously taking a few small bites and not being able to swallow. Favourite foods go uneaten, and lots of late nights are spent trying to find new recipes that he might be able to swallow. Starbucks double blended Strawberry Acai refreshers have been a meal staple for him. Oral GVHD has been all-encompassing – eating and speaking are difficult and painful.In addition to his oral GVHD, he also has begun experiencing GVHD of his skin and joints. This has made movement difficult with persistent body aches. Xavier describes it as his skin feeling tight and painful, with his joints and muscles feeling like they have been cemented together.Seeing my once active (big) little boy running around and going up and down the stairs with ease seems like a lifetime ago to when I see him moving slowly and wincing in pain as he stands up and takes the stairs one at a time. No mother should have to watch this child go through this. I feel helpless; I’m unable to take his pain away or do anything to help make it better.This has led to more feelings of helplessness as I continue to see Xavier handle more at 21 years old than some have handled in a lifetime. Through the pain and frustration, Xavier has never complained, or questioned “why me”? When you ask him how he is, the answer is always “good” or “fine”, even on days when I can tell that just swallowing water is painful.To treat the GVHD, Xavier has had multiple medication adjustments, but most have been unsuccessful in treating his oral GVHD. Most recently, Xavier’s team has applied to Health Canada to use a medication off-label. Thankfully, Health Canada and the drug manufacturer approved this request on a compassionate basis and Xavier has started this medication. Treating transplant patients is truly a team effort between the family, medical team, insurance companies, and drug manufacturers.Life for a 21-year-old post-transplant patient is something that many do not think about (we never thought about this until we became part of this community). Xav’s friends have been supportive throughout this process, continuing to stay in contact and involve him when they can. They know that when they are sick, it is dangerous to be around him and know protecting him is the most important thing. We have seen other members of our transplant community lose their social circle and many friendships because essentially, others cannot handle the responsibilities of being involved with post-transplant restrictions. Having restrictions like this as a young adult or having a friend with these restrictions can be difficult. Simple things that many young adults enjoy, such as going to the cottage with friends or away for a weekend are impossible for Xavier. Weekends away are impossible because he cannot be more than 1 hour away by car from Princess Margaret. A cottage has too many things that can make him sick; mold from the soil, bacteria from the lake, food cooked on an unclear BBQ can all lead to him being hospitalized with a serious infection. A healthy immune system can handle this, but Xavier’s cannot.His siblings have had to make adjustments to a new reality when it comes to social connections and relationships. Invitations to play soccer or get a coffee in a friend's car had to be declined because they knew it added another level of risk to Xavier. Weekends away, and invitations to cottages were also declined because there was too much close contact with others who may be carrying a virus that might be transmissible to Xavier. For the most part, Zoe, Andrew, and Zachry’s friends understood the reality that we faced.As we look to the future, we are excited to celebrate Xav’s 2nd re-birthday in February! We are so grateful that Xav’s treatment thus far has been successful, and he is still here with us. His 50/50 odds for long term survival still weigh heavy on our hearts and minds as we continue to hope and pray for success. Walking into Princess Margaret to pick up medications brings back a flood of memories and emotions that I never knew were even possible to experience until these past few years.As the LLS echoes, the words “you have cancer” have been one of the darkest days of our lives. We strive to continue to bring hope forward and continue to Light the Night through awareness and donations. The blood cancer community is a community we never wanted to be part of, but now we continue to do everything we can to better the lives of those in it. We never thought we would have raised over $10,000 last year! Supporting and donating to Light the Night has allowed us the ability to save Xavier’s life and the lives of others. Research was the way that we got to transplant, and research is the only way that we will find a way to manage GVHD. I speak on behalf of mothers and families everywhere when I say thank-you for your donations, thoughts, prayers, and every share on social media. Each donation brings us one step closer to curing blood cancer, honoring those we have lost, and extending the lives of those who have been affected by this horrible and life altering diagnosis.Year Three participating in Light the Night: It still feels surreal that that we have become part of the Blood Cancer community. 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 few years have taught us to value each day, even the not so good ones. Since Xavier received his allogenic stem cell transplant in 2020 due to his diagnosis of Acute Lymphoblastic Philadelphia-Like Leukemia 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 about 2 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 must live it to be able to fully understand it. My thought and worry are 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 supporting 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 years. Each one of us can be a lifesaver 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! Year Four participating in Light the Night: Another year as part of the blood cancer community and participating in Light the Night (LTN) with the Leukemia and Lymphoma Society of Canada (LLSC). Although we have unfortunately been part of this community for some time now, this new way of life does not get easier. It feels as though it is becoming increasingly harder to put pen to paper (or fingers to keys) and update the supporters of Team Xav. Blood cancers and the need for support, research, and hope does not end with the transplant process; more support, research, and hope are needed in the years after to help those affected deal with life altering side effects. As some may know, in October 2022 shortly after the Light the Night event, Xav was admitted to the Princess Margaret Cancer Centre (PMCC) for five weeks. It was another birthday celebrated as an inpatient; separated from family and friends, feeling the increasingly sting of the Covid-19 pandemic with strong visitor restrictions. While hard, we know the restrictions are needed to help save the lives of the severely immunocompromised patient population. With research from the LLSC, we were able to access lifesaving interventions at the PMCC. This was a hard hospital stay. I can still remember every word from some of the most difficult conversations we have had since diagnosis. As a mother, these were conversations I wanted to shield from my son, but with Xav being Xav, he wanted to protect me and showed more bravery than anyone should have to. Someone was always at the hospital, either in the room, or sitting in the lobby just wanting to be close by. The support from our family and friends was so appreciated and unexpected. From every phone call and text to quiet conversations, hugs, and sharing tears in the lobby, and coffee and meals dropped off; we cannot thank you enough, the kindness and support will never be forgotten. Xav continues to push through, but after four long and exhausting years, it becomes difficult to continue to talk about hope, but hope continues to fuel our passion for supporting the LLSC. For our family, and the thousands of others like ours, the LTN gives us hope that new treatments continue to be developed. We continue to hope that new treatments continue to extend life, but also improve quality of life; hope towards a future where we continue to celebrate and value every day. I speak on behalf of mothers and families when I say thank you for your monetary donations, blood donations, prayers, and every share on social media. Every conversation we have, and every donation brings us one step closer to improving the lives of those living with a blood cancer, honouring those we have lost, and extending the lives of those who have been affected by this horrible disease.Thank you again for walking this journey with Team Xav. We cannot thank you enough for your support.
