Corben is such a beautiful four year old soul! He is very playful and full of life, but what makes him different than other children is his bone marrow failed. He was attending preschool and playing soccer just like any other four year old when he started looking pale, bruising easily and complaining of his legs being tired. One day his school nurse called to tell me that Corben's color was just not looking right. I scheduled an appointment to have his blood drawn thinking it would be a simple low grade anemia that we could fix with some iron supplementation. The doctor called us the next day and informed us that all of Corben's counts (white and red blood cells, hemoglobin, platelets) were all severely abnormal. The end of the call came and he instructed us to go straight to the ER at Texas Children's. That is where Corben's bone marrow failure journey began.
Corben was admitted to the Medical Center that night with the suspicion of cancer. The doctors at Texas Children's suspected leukemia, but he ended up testing negative for both leukemia and lymphoma. He was discharged from the hospital after four days, but with no answers. For the next four months he spent twice a week at Texas Children's getting his blood drawn and completing platelet and blood transfusions when needed, which was often at least once a week. During this time the doctors completed test after test after test and still had no definitive answer to his disease.
After all the tests came back negative, the doctors decided to complete an analysis of his genetic structure. It seems that Corben does have a few genetic markers/mutations that science does not have the answers to. It is so amazing how God works. Our genes are so advanced and complicated that science has not caught up with God. For example, one of his genetic changes that was found is right next to the gene that science knows causes the worst leukemia a patient can have; however, science does not know what the mutation on Corben's gene does. We may one day have the answers, but for now we just have to rest in the peace of knowing that God is in control. None of this has surprised Him. He knows Corben's story.... He is the one that designed Corben!
Even though science does not have a specific diagnosis for Corben, we do know that he has some type of genetic bone marrow failure, meaning his body does not make enough cells and some of the cells his body makes look different. The treatment for bone marrow failure is chemo and a bone marrow transplant. Corben has matched with a donor that is selflessly donating his bone marrow so that Corben may live. Donors do not receive anything for donating. They simply do it out of the goodness of their heart. So now we are in the hospital and we will be here for the next 6 weeks. This is Corben's story!
Good morning! I wanted to pop on here and give a quick update. Corben has had a crazy week! He ended up getting discharged from the hospital last Wednesday. It was a whirlwind but wonderful! He is still struggling with oral medications and went home on IV nutrition so it’s been an adjustment going home.
Unfortunately we are waking up in the hospital again. Last night we had to go to the emergency room and ended up getting admitted. A virus that is normally kept in check by a good immune system has gone rampant. It affects his bladder and has caused pain when he is peeing and he is also peeing a lot of blood. Treatment seems pretty straightforward... they will need to flush out his system so we might be here for a few days on IV fluids.
As for his transplant numbers, most are doing good. His ANC is going back down so the doctors are going to give him some more “fertilizer” to help the cells keep multiplying. 💙
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