I settled on a medium-size, green notebook, one that would fit into my purse or bag easily because I had to carry it with me wherever I went. Everything about Tracy’s life would now be in this notebook.
When you have a rare disease, it’s even more difficult to find cures, treatments and studies to participate in, and when Tracy’s insurance denied her for a drug that she needed, things changed. We were now in a battle to get the denial letter so we could go to the drug company to ask for the drug for free. I now had to dig deeper for anything to help her because it could have been too late for this drug due to the delay.
With the last three years of her medical life on paper (over one and a half inches thick), CD’s with her last three MRIs, and the phone number where I could order slides of her rare tumor (which I assume it is still over at UC today) to be sent to any doctor that requested them, and the approval for an Angel flight to take Tracy and me anywhere she needed to go across the USA, I was ready to find whatever Tracy needed. Thankfully I had the blessings of her doctors. They told me to do anything I could to find a cure or treatment and they would do or try what they could or help us make decisions about what we should do.
Over the years I went to Google and would type in Mesenchymal Chondrosarcoma (MC) brain cancer and see if anything would lead to something new. If it did, I would print it off or email it to Tracy’s doctors. But now we were in crisis mode, and I could not rely on Google to help me.
I started with a nursing representative at the National Cancer Institute. I gave her the spelling and told her to look up the disease as it pertained to brain tumors because it’s rare in the brain, but not as rare in other parts of the body. She told me that she had to put me on hold and it would be a few minutes – she had to look it up in her textbooks as she called them. I waited and minutes later the nurse came back and said, “Sorry, but I am having someone else help me because I cannot find this type of brain cancer so it will be a while longer.” Not what I wanted to hear from the one place that houses all the information about cancer. She came back on the line and told me that they couldn’t find it. I asked, “What do I do now?” She kindly gave me names and phone numbers of other institutions across the USA and told me to start making calls and to ask for anyone that has dealt with this rare cancer.
So I did just that, I found people that were willing to help. They sent out emails to find doctors that had dealt with this type of cancer. We got some hits, but once they reviewed Tracy’s medical history and MRI’s, they had nothing new to offer that had not already been tried by Tracy’s doctors.
Through those last months, when I would enter the hospital room, I would see the look of anticipation on Tracy’s and Mom’s face every day. They wanted to know if I had found anything else out. It was hard not having anything new to report so many times, and I even lost my job through all of this, but I had another job to do, whatever it took and I would do it for Tracy, for Mom and dad, and for Chaz and Austin.
I found hope at The University of Michigan. They were working on a new drug with rare sarcomas and felt that it was worth a chance. We would take the Angel flight to UM and stay there, but I wanted the UM doctor to have a consultation with Tracy’s main doctor, her oncologist, to talk it over to make sure that he understood how they were going to proceed. I am a lay person, I learned a lot through all of this, but I had to trust her oncologist to make the final decision.
Unfortunately, the two doctors were never were able to have that conversation. Instead, hospice was called in.
As I sit here and remember all the events of those last three months and page through the green notebook to read my notes, I find that I am even more convinced a cure registry is so much more needed than I originally thought. We have to make it an even playing field so that everyone can have access to every cure, treatment, relief of symptoms and clinical trials for every disease.
It was exhausting, frustrating and mentally draining to do what I did for months, but I did it with hope and love and would do it again, if needed, but my hope is that we can change this.
I hope you will consider signing this petition and sharing it with anyone you know that may want to help us. This is another way to honor Tracy’s journey. Take what she went through, as tough as it was at time, and make something good come out of it by helping others.
Click below to sign my petition
https://www.change.org/p/united-states-surgeon-general-create-an-online-registry-of-cures-and-or-potential-cures-that-is-made-available-to-the-public
Thanks for your help!
Smiles,
Jackie
President & Founder
