The ups and downs and things you hope never come true when you sign up for a clinical trial.

It’s been quite some time that we have been wondering what is going on with Ella. There have been mood issues, trouble falling asleep, some rage issues among other things. I have listened to others as they suggested maybe it’s the age, or the gender, but somewhere inside of me, I just knew it had to be more. My heart and head thought maybe another diagnosis was coming and I was right. It has been about a week since we got her test results back and I’m still trying to process it as we wait to see the doctor.

When Ella was getting ready to go through Gene Therapy and start the clinical trial, there were numerous papers to sign as you can imagine. Medicines they would use, problems that could happen. We were overwhelmed to say the least, but we had one goal and that was to save Ella’s life, no matter the cost. The enormous amount of chemo she would have over four days to kill her cells and make room for her new ones had the possibility of causing many issues. Some during treatment and some later on in life.

We are now at the later part of her life, (9 years post transplant) and we now know what can be/is causing many issues with her.

We went to see an endocrinologist last year and everything looked good, her bone age X-ray was younger than her age but we expected that due to treatment. Fast forward a year and another appointment for the same issues that continue. Frustrations are building both with Ella, her brothers and dad. I too am frustrated but I have always felt like it might be something she can’t control, so I have been trying to maintain my composure and patience as best as possible.

When I got the email that her blood tests were in, I was eager to check… maybe we would finally be able to help her and know what was going on.

I will rewind to the papers that we signed before treatment. Many things were a possibility that we had to sign off on, but only a few hit me. One you can imagine, but the other two “Gene Therapy could result in cancer later in life and the high dose chemo could cause ovarian failure”

Knowing this was a chance to save Ella and stop this wicked disease, of course we took it!

Unfortunately the recent test results revealed ovarian failure.

Ella is suffering so many different symptoms and most of it or all of it is due to her ovaries not working. My heart exploded in sadness for her. I just knew something else was going on and I’m so glad we finally know.

I remember thinking 9 years ago that if she can’t have kids because her ovaries don’t work, well that will at least mean she is alive and here with us. That was the way I pushed through everything, just believing in the miracle in front of us and nothing else.

My heart hurts. Yes, I know it’s not the biggest problem… it’s not cancer. Yes I know she could adopt if she ever got married someday, but let’s face it, most likely she will always be with us anyway, and that’s a story for another day.

My heart hurting isn’t about me, (well, maybe a little) but it’s about Ella. She has been through so much and the hits just keep coming. Although it’s sad and hurts, I also thank God so much for leading us in the right direction to find answers. Now we can help Ella, treat Ella however the doctor thinks is best, and we can continue to learn and show more patience and empathy along the way!

We knew the possibilities that we were signing up for with the clinical trial… it didn’t make it easy and and it doesn’t make this diagnosis easier either. We pray that this is the last struggle she goes through but we know that is unrealistic.

Life is filled with ups and downs, more downs for some and ups for others but how we respond is the key. I am generally a scaredy-cat and always have been, but thanks to the down parts, I am slowly learning lessons that I probably would have never learned otherwise.

Ella 🌹, may I always do right by you, my Warrior Princess 💗


~ by Rebecca on February 6, 2023.

2 Responses to “The ups and downs and things you hope never come true when you sign up for a clinical trial.”

  1. Becky my heart goes out to you and to Ella. I’m thankful you now know what’s going on and it’s something you can treat but I know it still hurts. You are a warrior yourself! Sending hugs and prayers. May things settle down and give you all a break!

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: