Sometimes memories can hit you hard and the memory of the green notebook was one that hit me hard this week. Tracy was a notebook kind of person and for good reason. Between her three sets of doctors, appointments, medications, keeping track of symptoms and other everyday life events, you have to be organized. I knew I needed a notebook for Tracy when I had to take care of business for her.
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
Thanks for your help!
President & Founder
Thursday, August 21, 2014
Would an online registry of cures and/or potential cures for every disease, change the outcome for many? That is our hope.
I've started the petition "United State Surgeon General: Create an online registry of cures and/or potential cures that is made available to the public." and need your help to get it off the ground.
Will you take 30 seconds to sign it right now? Here's the link:
Here's why it's important:
Do you believe there are cures that we know nothing about for the many diseases out there? We have unbelievable technology with new discoveries and advances every day. Heck, we put the first man on the moon in 1969, and with that intelligence 45 years ago, I find it very hard to believe that we cannot find cures for every single disease within the human body. I know I am not alone in this thinking.
Every day children and adults are diagnosed with medical conditions. When that happens to a loved one, the gut reaction kicks in and you want to research everything about the disease or condition – symptoms, causes, treatments, side effects and cures. But all too often, we cannot find information for cures, even if they exist. So what are we to do? How do we go about finding information on cures, or the potential for them, in order to make the best and most informed decisions? While we can rely on medical professionals for their opinions, we are left with the idea that there is still more to know.
I, too, have been personally affected by disease within my family. I felt helpless, but had to do something. My sister Tracy had a rare brain tumor, and like Tracy and me, there are billions of people affected by disease and other medical conditions.
People dealing with disease should not have to worry that they haven’t been given all the information. A solution is to make sure everyone has equal access to information via a cure registry because, as we all know either from personal experience or the experience of a loved one, a cure is the #1 wish list item for anyone with a medical condition.
An online registry of cures and/or potential cures will bring us a step closer to fulfilling this wish. We believe a nonpartisan committee, guided by legislation, should build an online, transparent, cure registry to which everyone will have access. The registry would be a place to see what cures are currently available or those that have been approved as well as those not yet approved, but hopefully would be at some point in the future.
We reach out to you in this petition so that you can help us in letting our governments know that we want information, that we have the right to this information, and that we have the right to make informed medical choices for ourselves. A cure registry is much needed and should be something that is protected by legislation and governed by a non-political or non-partisan committee. We seek 100% transparency so it is an even playing field for everyone to have all the information about the cures and potential cures that are available.
Had a cure registry been available when my sister Tracy was battling her rare brain cancer, Mesenchymal Chondrosarcoma, I could have searched and found any possible cures or treatments in progress around the country. Instead, I spent many hours calling and emailing medical institutions across the nation trying to find someone, anyone, that had treated this rare cancer with no luck and Tracy eventually lost her battle. If a cure registry had been in place at that time, I could have searched and found this information within seconds and Tracy could have had other options, and perhaps she could still be with us today.
An online cure registry, developed as a searchable database, would give us a way to see the progress behind finding cures. With a nonpartisan committee and legislation in place for transparency, we would demand for ourselves and for our loved ones, the possibility that cures be given a chance and not be hidden or squashed by greed any longer.
I know firsthand, when you want or need to change something in this world, passionate people will do anything to help their loved ones, and then mountains can be moved. And we know this task will be like moving Mount Everest, but with your help in signing and sharing this petition, together we can take on this huge mountain. Then everyone will have access to information about available cures.
Thanks for your support!
You can sign my petition by clicking here.
Smiles, Jackie Waters