Last month, Amara had her 12th treatment in the hospital. We have been on this journey for 15 months now. This recent treatment was 10 weeks from the previous one. When we started last year, we were going into the hospital for treatments every 4 weeks. This year, seeing Amara's progress, we have been able to slowly space out treatments. A larger gap between treatments has been so good for our quality of life, even though it does mean more anxiety, dread and discomfort during each treatment as we lose some of our muscle memory (and trauma) and start to lead normal lives. The photos below are from a sunny moment between infusions during which Amara wanted to get away from the hospital floor and head outside to practice her jumping, as she has been learning in physical therapy. She is still lagging behind on that skill for her age, as she is on running and climbing. 

This treatment was one of the worst we've had since the early days, for many reasons. Being older and stronger, Amara has more awareness of her pain, anxiety about what is to come, and strength to resist, which made every intervention more painful and traumatic. She was more lethargic during the treatment, and was wobbly with slurred speech for a week after. We're not sure if this is because her body isn't used to treatments anymore, doesn't need as much treatment, or something worse. Our specialist thinks her next treatment, 12 weeks later at the end of August, could be her last. Then it will be a wait and see game. Wait and see if she relapses. Wait and see if an infection triggers the OMS. Or, what we are hoping and praying for, wait and see her move smoothly into full remission.🤞

On the oncology side, we have been so lucky, blessed, grateful that there has been no recurrence of her cancer. After some big scares upon seeing abnormal counts, and a series of additional diagnostics, second opinions etc., our worry was lifted. We can now space out MRIs to every 4 months instead of 3. Some schools of thought suggest we can go even longer without screening. Others are more conservative for the first 5 years. We are waiting to see what the consensus is among our oncologists. 

Meanwhile, Amara continues to get physical therapy, occupational therapy and behavioral therapy once a week. Mom and dad are finally starting to catch up on our long-ignored health appointments and screenings as well. 

Sadly, the OMS journey is not as smooth for many. I've heard from other parents about kids who never see progress despite the same or more aggressive treatment protocols for years, or progress does happen but takes much much longer, with many relapses. For others, 6 months of treatment is all it takes.  No matter where we land on that spectrum, OMS will always be our story, and we will continue to fight for more awareness, research and a cure.

💫

#opsoclonusmyoclonussyndrome

#opsoclonusmyoclonusataxia

#raredisease #childhoodcancer 

#oms #neuroblastoma