Updated: Apr 28
Our main mission at Garage 10 is to provide financial assistance for individuals traveling to receive care for rare disease; however, we also strive to provide awareness and an inside look into rare disease. You most likely already know that, for me, this passion grew out of my own families journey through rare disease. My husband and I recently traveled to Houston for follow up care for his rare disease. Here you will find a peek inside of our trip and how complex a routine check up can be.
Rare disease manifests itself in many different ways. For us, Taylor is cured of a rare cancer, but has potential for re-occurrence and must receive routine follow up scans. Therefore, our trips are easy to plan for at this point. The beginning of a diagnosis looks quite different in that appointments are usually more often, unpredictable and more intense. For this trip, we prepared by booking a hotel room, making arrangements for care for our 3 children (and dog), packing our bags and fueling up the car. We are able to drive to MD Anderson from Baton Rouge. It is quite common for travel to include flying when visiting a specialty center for a rare diagnosis.
THE COST BREAKDOWN
Hotel for 1 night at MD Anderson Rotary House
Fajita dinner for children and grandparents (we ordered dinner for them since we arrived home much later than planned)
*this is only for his first visit of the year
Deductible will be met this visit and all medical expenses for our family will be covered 100% for remainder of year. This can be paid in full or broken up into monthly installments paid throughout the remainder of the year.
We choose the Sunday/Monday format for appointments. Sunday’s visit consists of Taylor having labs drawn and a CT scan. Due to the current global pandemic, patients are not allowed to have anyone accompany them into the hospital. All patients, except for a few exceptions, must endure the needles, IVs, waiting, anxiety and discomfort completely alone. In cancer, you often hear the phrase ‘no one fights alone.’ Well that is not exactly the case right now. Many people who are very sick are facing treatment alone. We were fortunate to bear the hardest days of cancer before COVID!
Monday’s appointment is the visit with oncologist where scan results are given.
I joined the Monday morning visit through Facetime. Immediately I could see in his doctor's demeanor and wording that she had an abnormality to report. She began with the positives and I was hanging on to hear that word....but. Before long it came, but, there is an area on the thigh that the radiologist is recommending for further testing. She assured us with words we have heard before, 'it is most likely nothing.' Words that really are meaningless to me. We began this journey with Taylor having pain and symptoms that were 'most likely nothing' but soon turned into a REALLY BIG SOMETHING! She may be absolutely right and chances are it is nothing; however, hearing this was quite worrisome.
Taylor was scheduled for an ultrasound. I tried my best not to spiral into the worry, fear and worst case scenario thinking. This is very hard for me. We waited a few hours in our hotel room, checked out, packed the car and Taylor headed back into the hospital for an ultrasound. COVID policies present a unique set of challenges for patients and caregivers. Usually, caregivers can tag along with the patient, hang out in the waiting room or just walk around the hospital to work off nerves. Waiting now must be done in the car, hotel room or perhaps a nearby coffee shop or restaurant. Since we had our car, I decided to wait it out in the car. I drove to Kroger and sat in the parking lot. I have not yet found a place at MD Anderson to wait without checking into a parking garage. I am not a fan of parking garages as I feel trapped and prefer an open space for waiting. Taylor was done in a little over an hour, and I picked him up for the drive home. This time we left MD Anderson with very unclear results. On the one hand, the abnormality could be absolutely nothing. On the other hand, the abnormality could be cancer! We sat with the unknown until the following morning when we received a phone call with the results.
Thank goodness, the findings were a BENIGN intramuscular myxoma. From a quick google search, this appears to be yet another rare condition. For now, Taylor will continue to return to MD Anderson to be monitored with scans every four months.
We were told early on by a pulmonologist at MD Anderson something that has sat with me. He said he knew one thing for sure, the more you look the more you will find. Most of us are not getting routinely scanned; therefore, we have no idea if our lymph nodes are enlarged or an area appears abnormally white or gray on a scan. Because Taylor has had cancer every single abnormality has the potential to be cancer. I guess this is cancer...always wondering if its going to rear its ugly head again. We were elated to hear for now things appear stable and clear for Taylor.
As you can see the journey and expenses of rare disease are daunting at times. We continue to feel blessed with the opportunity to be treated at a world renowned cancer center and hope to help others have the same opportunity through Garage 10. If you or someone you know need financial assistance to help with care for rare disease, please fill out an application for financial assistance. We would be honored to help.