Jace's Journey

Hi everyone,

I am starting this on behalf of fellow cancer and ATRT mama Brianne, her sweet son Jace, and their family. 

Today she got devastating and terrifying news. Truly living out the biggest fear we have as parents of children with cancer. The treatment he received for his original diagnosis has caused a secondary cancer. One that requires just as brutal a treatment, if he can even handle it. 

-Victoria

This will help alleviate some financial burden as they navigate this impossibly difficult time.  

Here is the update in her words:

It’s ironic that I have to make this post on the FIRST day of Childhood Cancer Awareness Month. Long post but stay with me… Today, Jace’s oncologist literally received some labs while in our room, confirming Jace has a gene deletion in his bone marrow. This means Jace has MDS- which is a cancer condition that turns into AML (a severe, aggressive type of leukemia with no cure). Jace’s doctors now have to meet and decide if a complete bone marrow transplant is something he can tolerate. He CANNOT tolerate a full dose of it, but he may not be able to tolerate a “half” one either. We would have to find a match and someone would have to donate their bone marrow to Jace. We would have to kill every. single. immune. system. in. his. body. We would be on 7W… the BMT hallway…again. But this time- with much much higher risks for detrimental side effects and issues; and we would be broken up as a family. (Jace has a little brother now for those who are not aware.) He would be inpatient for MONTHS. He would have to stop school and be secluded to a tiny room for MONTHS. We would have to do transplant ASAP, before his cancer turns into AML. It’s not guaranteed transplant will cure him…and this is why we have to meet with doctors. IF Jace cannot have the transplant (we won’t know that for a bit) and/or we choose to not do it because pros vs. cons, we have reached the end of the road. Jace’s MDS will turn into AML and ultimately cancer will take my baby from me. You know shit is real when nurses and others approach you and say “I’m so sorry.” It makes it real. It makes it solid; concrete. Our nightmare is here. We are down to two options…maybe only one. We are going to give Jace the best, the utmost BEST, life we can give him from here until the end. Trips and adventures will be planned. We do not know how much time Jace has, and THIS is our reality. THIS IS THE REALITY OF CHILDHOOD CANCER! I’ve been transparent the last 4 years and will continue to do so.

.

.

.

You can read more about Jace’s story here:

https://www.facebook.com/babyjacesjourney?mibextid=D4KYlr (https://www.facebook.com/babyjacesjourney?mibextid=D4KYlr)