While I am hoping that my friend Allison does not mind me sharing a photo of this lovely mug that she sent me. I will say that she has been a real Godsend to me with her blog and her wise counsel as well as her heart for helping caregivers deal with patients with rare diseases. It has been more of a blessing to me than she will ever know.

However, I just wanted to share with you a little bit of my part of the story. Throughout my life and almost 25 years of marriage I have always been the sickly one, always with one strange illness or another. For which I have finally received my own, rare diagnosis. Fortunately it isn’t as serious as my husband’s.

But in 2018, when things were at their height for our businesses and our economy and things were going so perfect. We not only had the corporation that I inherited from my father but we had just branched out into some retail areas and I was in the process of starting up my own dream business, a BnB in an old antebellum mansion in South Georgia (USA). Which was also perfect as I had just spent thousands of dollars on the renovations and we were just getting our first customers in summer of that year, when my husband had contracted a job with a certain well known chicken manufacturer company. We were going to do a job for them. But while he was inspecting the job and the job site that they wanted done, he unknowingly contracted Salmonella poisoning at which point he became severely and uncontrollably ill.

So, my life in some ways gradually came to a screeching halt while we navigated through the unfamiliar forest of sickness with him. And while he survived the sickness and the sepsis that was involved, our world was forever changed!

In the 2 years following his initial sickness his blood counts continued to fail him and doctors were continually pressuring us to go the a prescribed “cookie cutter” regimen of radiation therapy and chemotherapy for what they thought was just leukemia. But I would frequently freeze, thinking that there had to be something more to this. Yet I couldn’t quite put my finger on it. Because looking back, ever since I had known him, his bloodwork had always seemed a little bit off. But now, it was at that point, that it had me entirely scared stiff and I was almost to the point of a nervous breakdown. Because I had seen what my father in law went through back in 2002. And I now know that it was the radiation that had killed him and the potential of losing the love of my life to that was entirely unthinkable.

So, after a whole lot of prayer and knowing that I had heard from the Lord on this matter. I began insisting that my husband and his doctors find out what was really going wrong.

So my hubby, bless his heart, went and started researching (A LOT) on all that was going on with him on the National Health Institute ‘s website. At which point something didn’t set right with him either.

So, we began the process of getting referrals to some of the best healthcare professionals in our state. Which was to a University Hospital in Augusta, Ga. And fortunately there they were able to do the genetic testing to take a closer examination of what was going on, on the genetic level.

By March of 2020, right as the COVID Pandemic was starting to spread throughout the US. My husband and I were actually headed to take one of our animals for a checkup to the vet, when he received a phone call (from the specialist himself) to inform us that while it was Leukemia, he said “Thank the heavens you did not get the radiation that they had prescribed for you! Because what you have is not just Leukemia but rather a breakdown in your DNA caused by a genetic disorder called Fanconi Anemia. Which is a very rare and very volatile genetic condition that can cause various types of cancer. And when exposed to radiation it will become like a ticking time bomb.”

Upon hearing this conversation I immediately melted from relief, I knew that there was something wrong. And seeing how some with cancer would respond- some with great responses but others the radiation literally killed them from the inside out. And it was most likely due to a rare genetic disorder like Fanconi Anemia. It really made me think.

If there is one thing that this whole experience has taught me, it is- don’t settle! Don’t just settle for a cancer diagnosis but rather find a way to look beyond that to the precise cause of it. Because if there is the slightest chance of it being genetic in any way, then there is a chance that the effects of radiation treatment could potentially be devastating. So know the cause of your diagnosis or the diagnosis of your loved one so that you know how to effectively treat and even cure the problem. And if you are being told that there is no cure, well, it’s time that you seek out a new professional and one that knows what the heck that they are doing. Because with all of the advances in technology I can testify that we are now on the cusp of something great!

As for my hubby and I, we went on to find a specialist who knew exactly what Fanconi Anemia was and they were able to treat his cancer accordingly and very effectively. And after persistently persuading his health insurance that he needed to see a specialist outside of our state and not accepting the phrase “it’s not possible” many times, he finally got approval from the superiors in the company who allowed him to go to one of the top hospitals on the topic for Fanconi Anemia at Memorial Sloan Kettering in Manhattan, NY.

At which point they were able to confirm a 100% bone marrow transplant donor and get him into the hospital for a special procedure regimen that did not include radiation therapy and the results were quickly phenomenal! A mere 1 month after the treatment his blood count bounced back up to almost normal and we actually had a hope for better days ahead.

But don’t get me wrong either. Because this road since has not been a “easy peezy” walk, due to the type of transplant that he had (in the height of the pandemic no less) it has been flocked with perils. But our strong faith in God and His good guidance has surely brought us through.

And now, because of all of this I am happy to say that we have found a new FAmily among the Fanconi Cancer Foundation for which my Husband Dexter was accepted as a council member. I could not be more thankful for all of their help and support nor more proud of my hubby! This life is truly an adventure with my rare and one of a kind gentleman, and one I will never regret. Because I am a part of the story and this story is making history.

---

Like what you’re reading? Show me some love and buy me a coffee ☕️. Just donate 99 cents to help me support all that I do for caring for others. Thank you 😊.

Cash app: $AmandakSherrell

Now accepting Venmo