Status of Children's Hospital visit...
Hi all We are looking forward to using this website to update everyone about how Jace is doing. Here is a quick recap of where we have been so far:
Jace had a GI specialist appointment 5/9 and routine lab work showed some concerning platelet levels. We went to our local ER to have his blood work rechecked that evening, and we were instructed to go to Valley Children's Hospital in Madera that night/morning.
We arrived at VCH on 5/10 around 3:30am and we're seen in the ER for more bloodwork. We were admitted later that afternoon for what ended up being a two week stay. After many tests and appointments with specialists at VCH, we were transferred up to Stanford. After more bloodwork and testing, they were fairly certain he had a rare genetic disorder, but unfortunately the lab results take a few weeks. So we were discharged with weekly follow up appointments at Stanford to determine our plan for treatment. Jace has many specialists working on his case, and his condition has finally been confirmed (as of 6/20/17) to be a rare genetic disorder called Wiskott-aldrich Syndrome. This disorder causes an immune deficiency as well as low platelets.
The only cure is a bone marrow transplant, which the search for a donor is already underway. Jace is such a cheerful baby, and we are so blessed with his physical health. Unfortunately Jace has a very compromised immune system and can get sick very easily, with limited ability to produce antibodies to fight off any infection. So unfortunately until treatment is complete, he is in somewhat of a quarentine. We currently have restrictions on visitors as well as spaces he is allowed to be exposed to. This is going to be difficult for socializing him, but thank goodness for modern technology where we can FaceTime and Skype our friends and family.
They are hoping to begin the transplant process in the next four to six weeks. Before the actual transplant, they will have to kill off his existing bone marrow through chemotherapy, then the transplant will begin. After the transplant, we will be living up at Stanford for a minimum of 100 days. During this time he will have many Doctor visits each week to make sure the transplant is successful and he does not get sick. This is also a time where he is very susceptible to illness. His stem cell doctors estimate that he should be "recovered" by one year after the transplant. If everything goes according to plan, by fall 2018 he should be able to be exposed to life as we know it.
We are looking forward to getting this process underway so he is able to live a normal life and be able to play with children and go camping and enjoy the outdoors without the fear of injury or illness. But for now, we will stick to the great indoors, hand sanitizer and air purifiers....this too shall pass. Check back for updates regularly as we will do our best to update these posts with current pictures so you are able to see his bright, smiling face.
Becca, Andrew & Jace