Hard to believe two months have passed since Leah’s last MRI… But here it is June, and the July MRI is just around the corner.
Leah’s last MRI showed an increase in damage from the proton beam radiation. Leah was completely off steroids and chemotherapy for the first time in over a year, and doctors believe the true damage was finally unmasked.
In January, when Leah was losing sensation and function in her right leg, I just kept praying, “Please, God. Please don’t take her right arm. Give her this one thing. Please.” I drew a line in the sand. And He crossed it. Just prior to the April MRI, Leah lost some function in her right arm and hand. Everything she did with her right hand became difficult: eating, brushing her teeth, writing… And the most heart breaking, her ability to draw, color, and paint. Her artwork was her peace and new-found, quiet happiness. And suddenly, that too, was taken away.
Despite the constant decline, we’ve continued with physical therapy and occupational therapy two to three days each week. There has been some improvement in her arms and hands. At therapy, she’s able to walk on the treadmill for 8-10 minutes without the use of a harness. She can also walk a short distance with a walker with some assistance. My girl is constantly working to make her body stronger. She never, ever gives up.
After the last MRI, I was convinced that we had seen the worst of it. That things could only improve from this point forward. But sadly, just this past Friday, a swallow study revealed that Leah is aspirating when she drinks liquids, and she is having difficulty swallowing solids. Moving forward, we will add a thickener to her liquids and remind her to swallow twice with each bite of solids. Surprisingly, the thickener is not awful. It doesn’t change the taste of the drink, only the consistency. Leah has been a soldier about this, as usual. Never complaining.
This new finding may explain some of the respiratory problems we’ve been facing in the past few months. The challenge is finding a pulmonary doctor to look at the big picture. After our frustration with Leah’s pulmonary care at Akron Children’s these past few months, we received a prior authorization to see a pulmonary doctor at the Cleveland Clinic. This experience proved to be just as disappointing. At the first visit, the doctor changed Leah’s respiratory regimen. I felt hopeful that we were finally on the right track. But when we followed up a month later, the doctor still hadn’t looked at her chest X-rays, CT scan, and sleep study as promised. Not only had he not looked at them, but he misplaced them. They were nowhere to be found as we sat waiting. Then, throughout the appointment, he seemed to keep forgetting that she has a brainstem tumor, which plays a critical role in her respiratory function. There really are no words to express how disappointed I felt. It was two hours in the car driving to and from, and an unproductive hour and a half appointment. It was pathetic. I’m not sure what we’ll do next.
Daily, I search for information on brainstem ganglioglioma, and I continue to find very little information. I read over and over again that it’s incredibly rare and undocumented. I just can’t understand, if this is the case, why nobody is interested in documenting her case- especially the tragic side effects of proton beam radiation. It just doesn’t make sense. How will there ever be advancements in treating this rare cancer when nobody is paying attention? More importantly, the next child with a brainstem ganglioglioma- just that one child- might benefit if her doctor knew about Leah’s case. That one child might be spared the devastating effects of proton beam radiation…
Please continue to pray for Leah’s complete healing. With God, ALL things are possible. 🙏🏻