Running with faith
Spencer Lindenmayer’s cord blood story – written by his mother Darla
Losing one child to a devastating fatal disorder called fanconi anemia was enough for any family to handle. The grief was unbearable but yet through the journey of fanconi anemia, I came to a better understanding of learning to fight, and running with faith.
My son Matthew died from fanconi anemia at the age of 13. He had gone through not only the diagnosis of fanconi anemia, but also the multiple diagnoses of chronic pulmonary embolisms, pulmonary hypertension, and chronic sepsis including klebsiella and MRSA, Graft vs. Host disease, demineralization of his bones resulting in fractures of his back, and juvenile diabetes. He was always a fighter, and at the time had survived the longest of any child who had an unrelated transplant with the protocol he was given with more radiation and chemo than unrelated transplants for fanconi anemia before and after him.
When my second son was born, cord blood was becoming the new procedure to use in a transplant for blood disorders and cancers. I was excited when I was pregnant and immediately did all I could to find out about collecting my son’s cord blood in hopes that he would be a match for my oldest child. My hopes were crushed when I found out that my health insurance would not pay for the collection. I explained the life saving effects it would have for my first child if my sons were a perfect match. Over and over my claim was denied.
Our family was overjoyed when we found out that Children’s Cancer Society would pay for the collection of our cord blood. Spencer was born on September 27, 1996. He was premature, being born at 33 weeks but just like his brother he was a true fighter. He spent only 36 hours on a ventilator, and only thirteen days total in the NICU. His cord blood was collected and stored through our cord blood banking agency, ViaCord.
Unfortunately, our joy did not last when we received the news that Spencer was not a perfect match for Matthew and we would have to proceed with an unrelated bone marrow donor for Matthew’s transplant. I was happy that we had a perfect match, but disappointed that the cord blood could not be used. I told my husband that I wanted to keep it anyway in storage. My gut feeling was it’s an insurance policy. Research was being done on many different disorders, Spencer’s cord blood could be used for one of us, or another member of the family who may become ill. ViaCord through ViaCell was doing so many research projects that I knew saving it was well worth our benefit. ViaCell was at the top of research with cord blood.
I was a doula at the time and therefore would encourage my clients to collect their baby’s cord blood. I would explain to them to consider it like a life insurance policy, that their child’s cord blood could potentially save their child’s life or even their own should a devastating disease happen. I never knew what our own stored child’s cord blood would mean for us years down the road.
Spencer was ten, and was an active child. He loved wrestling, and playing video games. I noticed him for a couple of weeks becoming more lethargic, and extremely thirsty. He would come home from school and stand in front of the sink and drink cupfuls of water. Family members told me that he was a growing boy and this was normal. Call it mother’s intuition but that’s not what I felt. When he complained one night of feeling “weird”, I decided to take him to our local urgent care center. I explained to the physician that I wondered if he could have diabetes. I thought he was exhibiting some signs like Matthew before he was diagnosed with diabetes. After reviewing Spencer’s blood sugar, which was 650, we were immediately sent to our local children’s hospital to be a direct admittance.
Immediately upon learning about Spencer’s diagnosis, I went into research mode. As a structured settlement medical underwriter, I knew the devastating complications already in regards to juvenile diabetes. I read about it everyday through my work. I still read up on everything there was to read on juvenile diabetes. In the back of my mind, I knew we had cord blood and surely this could be used to save our son’s life. I went to Juvenile Diabetes Research Foundation (www.jdrf.org) on the internet and researched clinical trials. I found a trial at Shands Hospital with the U of FL in Gainesville. They were using cord blood.
After reading their protocol, I knew this would be the answer. I immediately called to talk to Dr. Haller, the principal investigator for this trial. Spencer was their ideal candidate. And he would be their oldest patient for this trial! When we met Dr. Haller and the other associates directly related to the transplant clinical trial we knew we made the right decision for our child. He was so helpful and knew instantly that we needed to be more aggressive with Spencer’s diabetes to get him under better control. He was able to change our regimen so that his control would be more suited to Spencer’s needs. This did mean more shots in the beginning for Spencer though. He was on two insulins and taking 4-5 shots per day. On March 23rd, 2007, Spencer received his cord blood transplant at U of FL at Shand’s.
The cord blood transplant took less than 30 minutes and within a few hours, Spencer was running up and down the halls, literally. After exactly three weeks, we noticed a pattern in Spencer’s blood sugars dropping. He was requiring less insulin. We felt like we had a bump in the road at week two when he was diagnosed with Hasimoto’s thyroid disease. He was started on a thyroid medicine to help bring his antibody level down. After six weeks though, he was improving at an incredible rate, he was using insulin on only a sliding scale basis. He was using Lantus insulin at night, and the sliding scale with fast acting insulin only if he needed it. But he never needed it!! We knew the cord blood had to be working on his juvenile diabetes.
That was not all the cord blood was helping to cure!! On May 15th, 2007, we were told to stop his medicine for his thyroid disease. Apparently the cord blood is working wonders and has cured his thyroid disorder as well. Currently, Spencer is down from 4-5 shots a day to only one and this one is currently being weaned down. We thank God everyday for the decision we made long ago to collect and keep our cord blood. Cord Blood is saving LIVES!!!!!!
