Update on Korbyn 2/2/18 https://www.facebook.com/KorbynsKourage/videos/2040766122808083/
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This is the story of the courageous and strongest boy in the world, Korbyn.
He was born on October 24, 2014 and is the son of Hillary and Bryce Martinez. He is the happiest and most fun loving boy. Growing up, he hit and excelled at all the major milestones.
At 3 months, he started going to daycare at Primrose in Oviedo. All the teachers adored him and loved him very much. Day to day routine was as normal as any other families. One child would get sick; all the other children would get sick. That’s how daycare goes.
When Korbyn was 8 months, around 4th of July, 2015, the teachers at his daycare called about a fever. After a doctor’s visit, it was determined he had an ear infection. We asked to see if anything was going around at daycare. The teachers said he was the only one. After he cleared the fever and with his antibiotics, he went back to daycare. A week later, we received another call about a fever. This was a persistent ear infection. After stronger antibiotics and no more fever, it’s back to daycare. Another week goes by, another call about a fever.
Tuesday, July 14th, Dr. Fisk, at Interlachen Pediatrics in Oviedo, was examining him and prescribed very strong antibiotics which were 1 shot in his leg per day for 3 days.
Wednesday, July 15th, Dr. Fisk felt his belly and asked if he just ate, which Korbyn did. Dr. Fisk requested to not feed him before he comes in for the third day.
Thursday, July 16th, Dr. Fisk feels his belly. He says he suspects that he has a swollen liver and wants to order an ultrasound test and at the meantime he would draw his blood to run some other tests.
Friday, July 17th, we get the ultrasound test at Florida Hospital and head back home. We get a call from Dr. Fisk, the same day. He said that the blood work showed signs of very high lymphocytes. He said it could be viral or signs of leukemia. This was the first time we heard that awful word. He called Dr. Hajjar at Florida Hospital for Children and recommended we go see him and plan to spend a couple of days there for more tests. We run home pack a small suitcase and head back to the hospital and we’re admitted. This was the beginning of our new life but didn’t know it at the time.
We meet Dr. Hajjar and Korbyn is being Korbyn. Fun loving, energetic boy. Dr. Hajjar is surprised to see him. He said, in his 20 yrs. of practicing, he never seen a patient come in that’s so energetic and happy. Right off the back he suspects it’s viral but should run some tests to eliminate all possibilities.
Friday rolls into Saturday then rolls into Sunday and the days start to merge together as we contemplate our future. After numerous pokes to his arms, cat scans of his swollen liver and spleen, Dr. Hajjar delivers the news that Korbyn has acute lymphoblastic leukemia or ALL, Type B with the MLL mutation. Our world was shattered and Dr. Hajjar was just as shocked as us.
The very next day, Korbyn is in surgery, getting what will basically be his life line for the next few years, his double lumen broviac port. It’s still mind boggling to this day that he has a rubber tube that’s poked into his chest and stops inches from his heart.
The typical protocol of the chemotherapy treatment consists of Induction, Consolidation, and then Maintenance. The first 2 consists of a month a piece and maintenance last up until 2 yrs. after treatment started. But since Korbyn has a more aggressive form of ALL, his protocol consisted of Induction, Continuation of Induction, Consolidation, Continuation of Consolidation and then Maintenance. The first 4 being a month a piece of very aggressive chemo and maintenance for remaining 2 yrs. since start of treatment. That was the plan.
Korbyn fought through the chemo treatments like a champ, mostly in-patient. Smiling and being positive the whole way even through the rough times. His nurses and doctors all love him so much. They kept telling us that he is the perfect patient. He touched so many hearts in the hospital and gave hope to so many. He achieved remission after the first induction of chemo, fairly quickly. After the tough rounds of chemo, we made it into maintenance. In maintenance, it’s typically all out-patient unless he had a fever and that may be due to an infection. We’ve been so proactive with the germs and cleanliness of his environment that we kept him out of the hospital as much as possible.
Our Maintenance experience was short lived. Only a few months in, in April of 2016, after a routine check of his bone marrow and central nervous system (CNS), the result were positive for leukemia. This time the leukemia was only found in his CNS fluid. We were devastated. It was working so well and now it didn’t. What happened? It’s just cancer being cancer. Korbyn was back on regular chemo until the doctors formulate another plan.
There was a new study that Korbyn had a 50/50 chance to be on and it was very promising. Thankfully we were chosen for it. Korbyn had to wear a backpack for 2 months but meant we could be home while he was constantly infused. This new protocol required a bone marrow transplant (BMT) at the end. So, at the same time, we held bone marrow drives for BeTheMatch.org to try and find a perfect match for Korbyn.
After the bridge chemo towards BMT, we met with Dr. Shook of Florida Hospital for Children. At that time, we had a lot of our questions answered. We found out that Korbyn had a unique genetic makeup and the best option was to have his father, Bryce, be the donor for a haploidentical transplant. We also found out that the most aggressive treatment was to get cranial radiation therapy, since he relapsed in the CNS only. Dr. Shook said it may knock his IQ down a few points but it was the best chance of not relapsing. He had 8 days of cranial only radiation. He then had total body radiation after chemo to make room for the donor calls.
The BMT was the hardest on his little body. He had fevers of 104 and nauseous/vomiting/diarrhea throughout the storm. But as strong as he is, he pushed thru it and engrafted in 14 days. We were discharged 25 days after transplant and only had minimal graph versus host disease (GVHD) on his skin which was treated with topical lotion.
The next milestone day was 100 days after transplant. Once we made it to that day, we would be able to ween off more medication and some restrictions to start to move to a more normal life. At or around day 100, he would have the usual check of his bone marrow and CNS for leukemia. In early February 2017, we got the dreaded the call once again. He has relapsed in his CNS again. Devastated once again, we must dust off and formulate a new plan. This is the nature of how aggressive his ALL is.
Back on chemo and back into remission, there was talk of another chemo bridge maintenance to BMT and possibly using donated cord blood transplant. But after reaching out across the country, the doctors found a trial that uses his own cells the fight cancer. This new therapy is called CAR-T therapy. That’s where we are today.
We just signed consent and hopefully begin the process in a month. This process will involve a minimum 6 week long stay in Philadelphia. Out of work and away from home, we will be traveling by train to hopefully reduce the chances of infection a plane would have. After the process is done, he will able to do anything a normal child can do, with no restrictions. This is completely different than what we have been told for almost 2 years now. We’re scared, anxious, excited and most importantly hopeful that this will be Korbyn’s answer to finally starting a normal life.