Why do I run? I’ve asked myself that many times and I have many different answers. I have two letters that I have saved and I will give you just a small excerpt from a letter from our insurance company I received recently.
Dear Mr. Doherty
Your Physician has prescribed a lidocaine infusion for your daughters abdominal pain. Based on review of submitted clinical information by a Physician Board Certified in Anesthesiology the requested service is considered experimental/investigational.
Although there have been promising outcomes on some studies, the study states that larger studies are needed to ensure the safety and efficiency of the requested procedure. Therefore, the denial for lidocaine infusion has been upheld.
My daughter has been receiving Lidocaine infusions for a few years now. She has had instant relief from pain after every infusion for up to 3 months, with no side effects. This procedure is done at Boston Children’s Hospital by Sadie’s Pain Team. I received the letter the day we were driving in for another infusion. Sadie’s team appealed the denial and it was approved. It’s an unnecessary and ongoing battle with our insurance company.
My lifetime goal is to raise one million dollars for Boston Children’s Hospital Pain Clinic. 100% of the funds raised will go directly to research under the Pediatric Interventional Pain Service Fund. I run and raise funds so we can have clinical trials which is the only way to find cures. The letter from the insurance company motivates me to never stop even when denied.
So how is Sadie these days? Her 24/7 nausea has been uncontrollable. We are changing and adding medications and she will be having a procedure that was a clinical trial last year and now is approved and not considered experimental. She has had multiple appointments with hematology, GI, and of course the Pain Clinic. We have been back to genetics and waiting on approval on a full genetic test which will be denied but Sadie’s doctor said will get it through it just takes time.
Sadie is a senior and is looking forward to college. She will be majoring in Art and Art Therapy which has helped her when medication could not. This is called paying it forward as this gift was given to Sadie at BCH and she wants another child to benefit from the same therapy she receives.
Update since I wrote this letter a few months ago. Sadie has been absent from school at least one day a week starting on the first week of school. She’s only made one full week so far. Since the 6th grade her report card grades were not A, B or C but M for medical. We didn’t know what colleges would think of her grades so we relied on her essay. Sadie applied for 6 colleges and has been accepted in to 5 out of 6. Her #1 choice was Lesley University in Cambridge and she got in for both Art and the Art Therapy program. When she opened the letter and read it she cried. It was the first time that I ever seen Sadie cry from being happy.
I will be hitting the streets again for the 2020 Boston Marathon with Boston Children’s Hospital’s Miles for Miracles Team.
Please consider a donation of any size. All donations are tax deductible. Click or Copy the link to reach my M4M Fundraising page.