I never thought that I would be someone who felt comfortable putting my family life “out there” for people to read about. However, after daily reflection of this past year and embracing the realization of our challenging road ahead, I have changed my mind.
April 2014, just over a year ago to this very day, our lives were completely turned upside down when our then two year old son was diagnosed with a rare form of leukemia, Chronic Myeogenous Leukemia (CML).
Categorized as ultra-rare in pediatrics, CML amounts to less than 3% of all childhood leukemia. Shortly after diagnosis, Xavier was placed on something called a TKI (Tyrosine-kinase inhibitor) which is a groundbreaking drug that works to block leukemia cells and keep the leukemia at bay. While the TKI has successfully been doing its job thus far, our concern is that this is considered a life-long drug. It will not cure him. In fact, there is no known cure for CML. The only potential curative therapy is a Bone Marrow Transplant.
We are incredibly blessed that Xavier’s big brother is a PERFECT 10/10 bone marrow match. While a bone marrow transplant is considered a highly risky procedure, the fact that he is young, otherwise healthy, and has a perfect sibling match, we were faced with a big decision… Continue with a drug that has done wonders for the CML world, but has limited pediatric research (median age of 65), including long term cardiac effects and does not provide a cure. Or do we take advantage of a perfect sibling match while his disease is under control and undergo a Allogenic Bone Marrow Transplant with an 80-90% cure rate.
Thus, we are going for a cure and begin our new journey now.
Deep breathe…. Here it is…
I miss seeing Westin and Xavier each am. My prayers are with you each and every day. I just know the outcome will be swift and positive. Love to you all.
Sending strong prayers and love to the whole family. I’m in close touch with Laura and am ready to help in any way I can. You’re going to come through this with flying colors! – Love, Judy
My heart is with you, my cousin. You have a strong family, and a strong support group! I know that Xavier will be great! Time will cure this horrible disease, and it will be a memory for you and your family. I love you guys! You got this!
The Day is arriving – tomorrow is today – It is Here.
All Love & Prayers are With You.
Thinking of you….praying for strength and a speedy recovery for X and W…..
Sending you many prayers today and everyday hoping for a cancer free diagnosis very soon. God speed little Xavier.
My love and prayers are with you All.
Your strength. Faith. Commitment to one another in this walk through the fire is deeply moving. To two young brothers; to their courage and bravery in joining together to fight for life; to parents doing everything in their power, to give all that they have, all that they know, everything they are individually, and together; to a mother who has faced down fear, and given constant love and comfort and caring to her boys, stood strong and chose to share this journey with us, thank you and to a father who has asked the hard questions, been a strong man and remains undaunted in protecting his family, and to a husband and wife, who must feel as they stand alone against all the powers of the universe, know that in this very difficult time, we are ALL with you. God Bless You Xavier and Westin. The Sun Shall Rise. Godspeed.
My dearest Jaquelene, John, Westin, and Xavier,
I just want you all to know that I am here for you in whatever I can do! I send all of my LOVE and POSITIVE THOUGHTS to your beautiful family! Not that it matters , but I completely support your decision to go for the CURE, and that is what it will be!
I Love you all,
Laura
A hard decision but seems to me the right one. My thoughts are with you and Xavier.