To understand Reece’s story, you need to know the beginning of his life on earth. I had a very easy pregnancy with Reece; I felt good, ate well, worked out. Life was good being pregnant. At our 36 week check-up, I was measuring about three weeks behind where I should have been. Two days later we were in for an ultrasound (not thinking it would turn out to be anything) and it revealed that Reece was measuring five weeks behind. We were sent to the hospital that day to be induced. 32 hours later, Reece Christian was born at four pounds, two ounces. He was healthy, but very lucky to have survived! He had several things happen, which no one has ever been able to explain. First, he had a true knot in the umbilical cord. Second, the cord was attached in an obscure way to the placenta. Third, the placenta was dying in the area the cord was attached and the cord itself was not intact. These are significant issues in pregnancies, but Reece managed to get through them–miraculously. We named him “Reece”, which means, “Having great enthusiam for life.” We felt it was fitting to what he came through in utero and he has lived up to his name ever since. He is the most joy-filled, energetic child I have ever met.
Reece has always been a healthy kid. However, this fall, he began complaining of stomach pain and I figured it was due to some food intolerance. I set up an appointment with his primary physician for a week out and was told to keep a food diary. That weekend, I took my kids to my parents’ home as Terry was traveling for the weekend. Reece continued to complain of stomach pains and I decided to take him to the local urgent care. While there, the doctor decided to do a full work-up, just to be thorough. In this process, they took his complete blood count (CBC). Nothing unusual was noted in regard to this and I had the files forwarded to our local clinic so they could review them for the appointment the following week.
Reece’s pediatrician looked at the bloodwork and noticed a few numbers were slightly off and decided to get his CBC taken again. The numbers didn’t really recover and eventually, she decided we should go to Children’s Hospital in Minneapolis, as they are the experts. She did not seem overly concerned, however, and we went to Children’s a week later assuming that they would not find anything. On the contrary, the doctor at Children’s immediately showed concern for a rare bone marrow disorder and assuming another CBC came back abnormal, he recommended doing a bone marrow biopsy to be able to get some answers.
A week later, Reece went in for a bone marrow biopsy. The one part of his blood that was concerning was the size of his red blood cells. They were (and still are) abnormally large–they measure at the high end for size of adult red blood cells. Since there really were no other concerning numbers they were looking at, we were hopeful. The doctors were hopeful. 24 hours after the biopsy we received a call from the doctor who said after looking at the cells under the microscope, everything looked pretty normal. In fact, his words were, “You should be very relieved. You have nothing to worry about.” Everything was ruled out–leukemia, aplastic anemia–except for one more rare concern, we were cleared. Still, we had to wait two or three weeks to get the results of the genetic testing that needed to be done to officially confirm any diagnosis. We were told that we should start thinking about next steps to keep monitoring his blood, should everything come back normal. We were also informed that if they couldn’t find anything abnormal in the marrow during the genetic testing process, they would continue to run more tests on it, thus delaying the results back to us. We assumed the longer it took to get a call back to us, the better.
Nearly three weeks after Reece’s bone marrow biopsy, I received a call from our doctor saying that Reece’s marrow showed signs of Myelodysplastic Syndrome (MDS). The next day, Terry and I met with Reece’s doctor in person to discuss our next steps. The only cure for MDS is through a bone marrow transplant, which is the path we are taking. We will be working through the University of Minnesota-Amplatz Children’s Hospital for the transplant. To learn more about MDS, click here.