May 4, 2007 - April 17, 2018
Diagnosis - Acute Lymphoblastic Leukemia
Tristin was first diagnosed with a rare form of leukemia called ALL (acute lymphoblastic leukemia) with Philadelphia chromosome positive that was 85% blast. That was back in April 2013 when he was 5 years old. Tristin received multiple chemotherapy treatments. He ended up in ICU on a breathing machine due to an infection. He responded well to treatment and was cleared for discharge. He underwent months of treatments in and out of the hospital followed with multiple bone marrow biopsies. Finally Tristin went into remission and started a maintenance stage in his treatment in January 2015.
All was well and he returned to school like a normal child his age with just follow ups with the doctors. One year later, in January 2016 we went for his normal check up and to discuss the removal of his port. Tristin had shown no signs of being sick. They ran his blood as they do every visit, and found out the counts didn’t look normal. Tristin had relapsed and his leukemia had returned. We were heartbroken. We begin treatment right away to get Tristin into remission and prepared for a bone marrow transplant.
Tristin reached a level where the doctors were comfortable enough to proceed with a bone marrow transplant. His younger brother, Bentley, was his 100% bone marrow match. In July 2016 Tristin began radiation in preparation for the transplant. He did amazing and was able to be discharged earlier then scheduled. Tristin was finally 100% cancer free. Life was finally getting back to normal and he was able to return to school again, play sports and be a normal kid.
That changed when we went for our 1 year post-transplant bone marrow biopsy. In August 2017 we got the call that Tristin’s cancer had returned and he relapsed for the second time at 4.9. We began treatment right away. Tristin received 2 rounds of Blimotumomab chemo that is a 28-day infusion that ran 24 hours a day. This chemo is known to get you into remission. After the first round Tristin was doing well, but not well enough to go for transplant by the unrelated 10/10 match we were able to find. So we began a second round of Blimotumomab 28-day inpatient chemo in hopes to be in remission and on the road for transplant. Unfortunately Tristin's body didn’t respond to the chemo as well as it did the first round and rejected the chemo and his cancer had returned and brought his MRD to 4.6 and showed the Philadelphia Chromosome positive had also returned.
As of now we are proceeding with another form of chemo to hopefully get Tristin into remission and on track for a second bone marrow transplant. In the meantime we have pushed forward with our options. If Tristin doesn’t respond to the treatment he will hopefully qualify for Tcell in Philadelphia also known as CART. We have already collected Tristin’s leukocyte to freeze while we proceed with this chemo. We have already started the approval process for Philadelphia, which is our second option.
UPDATE MARCH 2018: Tristin's 2nd bone marrow transplant is scheduled for March 22nd. He had his last biopsy on March 5th, and will be inpatient on the 14th.
"We received the quilt today. Tristin absolutely loves it. He had a port placed today. So it was a great day to receive it. We are very thankful."