Colton Reid Patchell was born November 23, 2009 at Bristol Hospital. He was healthy 8lbs 6 oz and 22 in long. The first night went great, he ate, slept and snuggled with mom and dad. But after 12 hours of life Colton developed jaundice, and supposedly if they develop jaundice within the first 48 hours after birth there is a serious underlying reason. We knew something was wrong when they were keeping Colton in the nursery for a while and they weren’t telling us why. The doctors ran blood work 3 times. All 3 times it came back that his white blood cell count was low. The pediatrician at the hospital said he sent the labs to the hematologist at CCMC. I remember the words like they were yesterday, “He doesn’t think it’s leukemia”. Our hearts sank. I remember Steve and I going back to our room and just breaking down and crying. Next thing we knew Colton was getting transferred by ambulance to CCMC and we were following behind him, not even 24 hours after giving birth. I wasn’t even allowed to go with him in the ambulance. It was the worst day of my life.
We arrived at CCMC and rushed up to the NICU in Hartford Hospital. It was horrible, we had to wear gloves, masks and gowns so we didn’t introduce infections to him. We couldn’t even touch him with our hands. The hematologist came 2 days later and told us we didn’t need to wear the masks or gowns anymore. But he had no news, he wasn’t sure what was causing this. We were told he couldn’t leave until his ANC (absolute nutrophil count, or total blood count) was above 500 for 3 days. Colton’s was between 0-100, a normal person’s ANC is around 1500. Every day it fluctuated a little bit, but it still was no where near where it needed to be. We thought we were never going to be released. We stayed by Colton’s side, not believing that anything was wrong. He seemed so perfect, so innocent. It just didn’t seem possible.
After 2 weeks in the NICU, a test came back that indicated that I passed an antibody through the placenta to Colton. After that test, they felt comfortable releasing Colton, thinking it would work itself out. However, that test was invalid. They continued to monitor Colton. He had to indure weekly blood draws, multiple bone marrow biopsy’s and frequent check-ups. After 6 months of being seen at CCMC, the doctor suggested we get a second opinion at Children’s Hospital Boston. Our doctor in Hartford worked with the doctor he was referring us to and spoke very highly of him, claiming he was the best bone marrow failure specialist in the world. In the mean time, Colton was “healthy”, no infections and growing and developing as he should, which was a mystery to the doctors. The first visit to Boston was long, but we felt good afterwards. The doctors seemed determined to find out what is wrong with Colton, and more importantly how to fix it. We knew in our hearts that we were in the right hospital and with the right doctors. They adore Colton and treat us like we are part of their family, which is important when going through such a serious illness with your child. We are beyond pleased with this hospital.
In the months since, they still haven’t found the cause of Colton’s White Blood Cell issue, but they are calling it myelodysplasia, or pre-leukemia. It is only a matter of time until it turns. They believe that Colton has a new genetic defect that has never been found before, which isn’t very comforting to us. But they are determined to help Colton, and the only way to give him a chance at a normal life is with a bone marrow transplant.
We were scheduled for the transplant on Dec. 10th, 2010, but it got pushed back the day before to run more tests. They had a reason to beleve that Colton has tetraploid (an extra set of chromosomes) in EVERY cell in his body. If that’s the case, the chemo and radiation would be toxic to him. So the day before our admission date they decided to push it back to test his cells under radiation and chemo. We already knew he had tetraploid in his bone marrow cells, but for him to have it in EVERY cell is very rare. There is only 1 other case of a child having tetraploid in every cell, but the child is mentally challenged and isn’t developing normally – not Colton’s case. So they are stumped.
Colton is a special case, and like I have said before, we know we are in the right hospital. However, it’s hard to hear that they don’t know what is causing his illness, but on the other hand it’s comforting knowing they are doing everything in their power to help him. We are currently waiting for the tests on the cells to come back for chemo and radiation – and our plan will go forward or change from there. Colton is rare, they keep telling us that. However, they found a donor, almost a perfect match. He is a 36 year old male from somewhere in Europe. He agreed to wait as long as needed for the tests to come back. We hope to one day be able to express to him how much his selfless act is helping our family.
It has been hard to try to explain Colton’s illness to friends and family when you don’t understand the cause of the illness yourself. That has been the hardest part. He is perfect. He has an awesome personality and lights up the room. For as much as this young child has been through and to be so happy and carefree is a blessing. I hope one day he understands how many people he has touched – because his personality is infectious and his courage is endless. If you’ve ever met Colton you would agree. I know there is a reason Colton is here and has this illness. And I know that he will be able to share that reason with others. It’s funny because Steve and I picked Colton as his name because it sounded “tough”, and boy were we right. There isn’t a doubt in my mind that everything will be ok, it will be a rough road to “ok” for us but nothing compared to Colton’s road. He doesn’t deserve this, no one does. But we have to make the best of it. There is no other choice then to remain positive.
Thank you again for visiting Colton’s site. We know the story doesn’t end here. God bless.
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