ONCE UPON A GENE - EPISODE 033 - Loving Large: A Mother's Rare Disease Memoir
This episode is about the larger-than-life love that a mother has for her son. Patti Hall is the author of the book, Loving Large: A Mother's Rare Disease Memoir. In reading her book, I learned a lot about the rare disease called gigantism. I’m so grateful when people share their stories about the rare disease life because it’s so important in so many ways and you never know who will be touched by it.
EPISODE HIGHLIGHTS
Why did you write this story?
The idea didn't come to me. Early on when my son and I were discovering things together, he said we should start writing things down. As he aged, his opinion changed and he wasn't as interested in being involved, but it made me realize that what we were doing was so difficult that we could write it down and help people. I wrote to figure it out after we were over the most intense period, the first 15 chapters of the book. Knowing that I had to write the book was when we hit the wall that he couldn't be cured. I had to write just to figure out how I was going to endure this and go into a new normal that was never going to revert to before.
What is your son's diagnosis and what was happening in those early days?
Gigantism is sneaky. It's the childhood form of an adult disease Acromegaly. Kids start to outgrow what their body had intended for them. What I was seeing was height in my son, but we were genetically tall and new there was a height predisposition. A pituitary tumor had been growing and active for years. During childhood, he was getting taller and taller. He was 6'5" at 15 years old. What I wasn't noticing was that his younger brother who was two years younger than him wasn't keeping up. He was sweating a lot, had trouble digesting food and beginning to have random headaches. He was progressively in more and more pain. Tylenol helped with his headaches, but the pain in his knees was stopping him cold. He was having trouble even walking because of the pain in his joints. His growth plates weren't closing, so the rest of his body was moving into adulthood but his soft tissue and joints were staying firmly wedged in childhood. A pediatrician put the symptoms together and diagnosed him.
How long did it take to have a treatment plan?
We got his symptoms dealt with pretty quickly. It was a couple weeks before a CT scan showed a massive tumor on his pituitaries, the size of a golf ball. Blood work revealed instantly that all his levels were out of whack, but you couldn't deal with the tumor or his extraordinarily high level of growth hormone any other way except surgery. We got him on medicine for digestion and headaches and better manage his symptoms, but the real problem was the rate his body was growing- about an inch every two months. The only way to stop the growth was to get the tumor out. My life became about finding doctors who could do this.
When you were searching for doctors and surgeons, were you finding they were intrigued or afraid to get involved?
I didn't find anyone timid. It changed my notion of doctors and gave me a rude awakening into the rare world. Everyone wanted a piece of this and many doctors wanted to try to operate, but they had never done it before. One of the wonders of my story and Aaron's treatment background is that through a series of coincidences, I was able to get him to a surgeon who had done a surgery like this close to his age just a few months before. He was a surgeon who took care of my father after a terrible car accident years before and that series of events got Aaron dealt with quickly.
Was writing this memoir therapeutic for you?
I'm a writing coach and I tell a lot of people that it will be healing, and it is. I'm still in this, to be honest. What it did was help me figure out what I've done. I don't know if I healed, but I learned about myself and I learned that I wasn't very kind to myself in all those years and took terrible care of myself. I made choices that weren't about me because all I cared about was my children. It's about forgiving, because we don't need it from kids, but we need it from ourselves because we're so self-critical. I unlearned how to look after myself and now need to re-learn, so maybe some of that will come up in a future book.
What would you say to parents with young babies who are just receiving a diagnosis?
I would say that you know your child best. Underneath the anguish is self-doubt, wondering if you should ask more questions, push harder, inject yourself into doctor's visits, ask for another opinion. The answer is always yes. You know your child best. You know their symptoms best. You know if something isn't right. An empowered parent who knows the symptoms, spots everything and doesn't know if it's connected becomes the diagnosis. If you get a diagnosis you're not happy with, that you don't feel like explains enough, and a treatment that isn't getting your child the comfort and quality of life they deserve, keep pushing. Back down for nothing. Teamwork is what got Aaron good care and in the end, they accepted that we had done our homework.
What would you say to parents like me who have a story to tell, but they aren't writers?
I think everyone has a book in them. Find an awareness association to connect with others and find other families whose child has the same symptoms. Coping begins with conversation and books come later. Loving Large is my 6th book and I was already a full time writer. I had a blog before and that outlet was my way of managing. If your story is meant to be a book, you'll know it.
LINKS AND RESOURCES MENTIONED
Loving Large: A Mother's Rare Disease Memoir
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