11/11/2017
Relapsed💔
It breaks our heart to write this post but we want to let all of our superheroes know we received some devastating news last Wednesday, November 1, 2017. Over the past 3 years and 10 months Jace has been in immaculate health and in remission after his bone marrow transplant. He's been living a normal life and that’s all we wanted for him. He even started kindergarten at Helena Park Elementary this past August. But we are once again, un-expectantly faced with our biggest fear.
The weekend before Halloween, Jace was feeling a bit under the weather, nothing concerning, just a cold with a low grade fever. We decided to take him in to our local pediatrician just for a check up to make sure Jace didn’t have the flu. Everything checked out fine and we were sent on our way with a prescription. Tuesday, Halloween night, Jace was feeling better but still running a low grade fever along with a cough. He was so excited for Halloween, we decided to let him go trick or treating with his cousins. While walking the neighborhood, Jace told daddy, “my bones hurts daddy”. So John picked him up and carried him the rest of the way. That night before his bath, I inspected his body like I normally do once a week and noticed his skin just didn’t look right. Jace's skin was blotchy with white
spots, that’s the best way I can describe it. So the next morning, I made a call to the transplant clinic at Texas Children's to see if they could see him. We thought, maybe we were just over reacting and being paranoid about the whole situation but honestly the fear of his cancer coming back has always lingered in our mind. His nurse practitioner knew I needed reassurance that everything was ok, so she made room for him to be seen the same day. A CBC was drawn at his appointment and within a few hours we received the news that Jace’s leukemia was back.
We can’t even begin to describe the emotions, thoughts, and fears running through our mind. From that point on it has been a whirlwind. Jace was then admitted to the hospital back on the oncology floor, followed by blood transfusions. The next day he underwent his PICC line placement along with a bone marrow aspiration, lumbar puncture, Echocardiograms, and a kidney function test. It has been a lot to take in over the past week. Although all this seems so scary we still remain hopeful.
There is a new drug that just a few months ago was approved by the FDA. There are only a few hospitals that are allowed to administer this drug. Texas Children’s will the second hospital in Texas that will be able to administer the drug. The drug is named Kymriah made by the company Novartis. The process is CAR T cell Therapy, where the company will take Jace’s own T-Cells and alter them to attack his leukemia cells. Since the cells takes about 4 to 6 weeks to engineer, Jace will still need some chemotherapy to control his rapidly growing leukemia until the Car-T cells are ready.
We are so blessed that Jace is in the care of some the best doctors and he truly has the best team planning what’s best for him. We are so blessed to have the best family, friends, and work family that have shown us so much support this past week. The love we feel from all is so heartwarming and has really lifted our spirits. He has enjoyed all his visits this past week and stayed positive and hopeful. Please keep Jace in your prayers. Please pray for complete healing of Jaces little body. No child should ever have to go through this.