On this day last year, we woke up excited for the start of summer. I took Vincent for his PT appointment for torticollis that morning and later that afternoon he had his 4 month well check. That night Mina had a playoff softball game. Ramin came to the pediatrician appointment with us to hear what she said about the "torticollis". I remember thinking that we needed to see an orthopedic doctor and telling our pediatrician why. She asked us lots of questions and agreed that something else was going on. She explained that she was concerned because Vincent's head circumference had increased from around the 60th percentile to the 100th percentile and I thought that wasn't a big deal because Mina has a big head too (literally she wears the same size bike helmet as I do) but then she informed us that it wasn't his head size that was concerning, it was the rate it had increased since his 2 month well check. She told us she wanted us to take him for a consult with CHOP neurology and to call them to schedule an appointment and once I did to call her back so she could try to get it moved up (she knew an initial consult would take weeks to get in). We left, I called CHOP neuro and make an appointment for almost 2 months later. I called my pediatrician and told her when the appointment was and she said she would call to see if they could get us in earlier. This whole time I am still oblivious to the urgency of the situation because our pediatrician knew how anxious I am and she handled everything amazingly. If I had known we were going to CHOP for something as serious as a brain tumor I would have went there a totally different person who was losing her mind.
About 15 minutes after I hang up with our pediatrician, I get a call from CHOP neuro who says "we have an opening today at 5pm, can you come?" I hesitated and asked Ramin what we should do because Mina had a playoff softball game, we agreed to have my mom take her and meet them there after. It was 4:15pm on a Tuesday in rush hour and we live 15 minutes from CHOP with no traffic. I didn't think we would make it by 5pm but they said they would wait.
Continued in comments
What you are looking at here is a letter that I received today that brought me so many tears. Happy tears.
For over a year and a half I fought with my insurance company to cover my cold capping expenses.
It was exhausting, and often times felt like I was doing it for nothing, but I had nothing to lose and everything to gain.
My last conversation with my insurance was with a guy that tried to 'mansplain' what cold capping was to me after he had already called it "cosmetic".
He got a whole earful about what it REALLY is, what it means to us, and he'll probably never call it cosmetic again.
My insurance shot me down after 3 appeals that took over a year.
After the final denial they told me that if I wanted to take it any further, it would have to go to Washington DC.... And that's exactly where I took it.
I mailed a 60+ page letter to a DC office in March with a statement letter, physicians letter, published studies, lawsuits on the drugs I was given.. I basically got my Erin Brockovich on.
I hadn't heard back and I pretty much thought it was officially over and that was that, but this office is now directing my insurance to reimburse me... After a YEAR AND A HALF!!
There are a small number of people that get these capping expenses reimbursed. I hope that in the near future that changes. I hope that everyone that seeks these benefits, gets them.
This is something that really helped me through dealing with my diagnoses - and it needs to be available for whoever is able and wants that treatment.
Never. Ever. Quit.... You never know what's just around the corner! 😉
Cold Cappers - If you want more information on how or what I sent to get my claim approved, please use my "send mail" in my profile links.
"Real change, enduring change, happens one step at a time." - Ruth Bader Ginsberg
And that is why we walk. We walked on Saturday, for family and friends who have been faced with and fought Pancreatic Cancer, and whom we have lost. Specifically we walked for my Aunt Debbie, but we found through our posts and conversations about this walk, so many of our dear friends have been touched by this terrible disease.
And so we walked for them too.
We walked, and we fundraised, in hopes that our small contribution in combination with those of so many others might help researchers and medical professionals to find effective treatments and ultimately a cure. So that no one else should know the pain of living through a Pancreatic cancer diagnosis, or watch as a loved one faces the fight.
One step at a time.
And we smiled to stop the tears, we smiled with hope that tomorrow that change will come, we smiled for the lives and love of those we have lost, and we smiled for those who fight and survive every day.
#dahlemama #reedwalterdahle #pancan #onestepatatime #findacure #keepwalking #keepsmiling #purplestride