In October, RAWF provided Teddy Marchione, a Connecticut two-year-old, with a handheld blood analyzer to manage diabetes insipidus as a result of a pilomyxoid astrocytoma. Teddy is currently undergoing chemotherapy. Teddy’s mom, Molly, shares his story.
Teddy is still not out of the woods, but having the blood analyzer has enabled us to stabilize his sodium levels to a point that they haven’t been at since before surgery and this allows his brain to truly begin to heal.
Contributed by Molly Marchione
The Marchione Family
On July 20th, 2018, my two year old son, Teddy, attended summer camp all day and went to a family cookout in the evening. Overnight he complained “it’s bothering me” and pointed to the back of his head. The next day he vomited and I took him to the pediatrician.
On July 21st, I sat in the Emergency Room at Yale and had a doctor tell me my son had a large mass at the base of his brain. As a parent, nothing can prepare you for this news. My sweet Teddy underwent a ten hour surgery on July 23rd to remove a large amount of the tumor.
There was a lot of information and scenarios being thrown at my husband and me over the next 48 hours. One doctor said that based on the location of the tumor, Teddy’s pituitary gland may be “angry” for a few days after the surgery. Little did I know that this angriness would be what would keep us in the hospital for the next 1.5 months.
After surgery, Teddy developed severe diabetes insipidus (DI) and also an impaired thirst mechanism. Some days his sodium levels would be sky high and some days they would plummet. During one of the low sodium days, Teddy went into status epilepticus because his brain was so stressed by the electrolyte abnormality. For two months, we worked with multiple endocrinologists trying to stabilize his sodium levels. He required 2 blood transfusions because of all the blood draws required to check his sodium levels. He also needed surgery to place a g-tube through the wall of his abdomen so we could administer water because he was unable to drink enough to keep his sodium within a normal range. We were taught how to measure diapers and calculate in’s and out’s.
Finally, on Friday August 31st, we were discharged from the hospital with a plan from endocrine that they thought would work in the home environment. I was home and an hour later the doctor called to inform me that Teddy’s sodium was at a critical 123 and we needed to bring him back to the ICU immediately. I felt complete despair. Here I was at home trying to get my son to drink more water when more fluid could have brought his sodium lower and killed him.
We were inpatient for another 10 days and I was terrified of bringing my son home again with no way of checking his sodium levels. That is when some research led me to the Raymond A. Wood Foundation. Finding this foundation was the first time I think I was able to exhale since Teddy’s surgery. The thought of being able to monitor Teddy’s sodium level at home with a much less required blood amount was a game changer. I submitted our application and received notice that Teddy was approved for the i-STAT blood analyzer.
In the weeks before we got the blood analyzer, I was taking Teddy to the lab daily for blood draws. These trips were torturous as he quickly learned what they meant and his veins quickly began to collapse from the frequent pokes. The only thing that got me through these visits was knowing that soon I would be able to check his levels at home. Teddy is still not out of the woods, but having the blood analyzer has enabled us to stabilize his sodium levels to a point that they haven’t been at since before surgery and this allows his brain to truly begin to heal.
Teddy is currently on monthly chemotherapy and the i-STAT gives us peace of mind in monitoring his sodium levels when his treatment throws everything out of whack.
The Raymond A. Wood Foundation has been an integral part of my son’s current success at home. More than just the medical equipment, the foundation has provided us extensive training, emotional support and hope. I do not know if my sweet Teddy would be home without this foundation.
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Our prayers are with Teddy and his family as he continues his battle. Please consider donating to the Raymond A. Wood Foundation to help us to continue to help kids like Teddy battle back after a brain tumor diagnosis.
A special thank you to Mrs. Shirley Ballard for a donation in loving memory of Mr. Billy Ballard.
