Sadly, that has not been our reality for the past 5 years. We live life trying our best not to think about relapses, trying not to worry if subtle things are signs that the OMS is back and for the most part I think we do a good job living and loving life. We had a good stretch. The ritux + dex pulse we did last December/January gave us 9 months. It was wonderful, but in other ways it makes being back here even harder. We were almost to a place where OMS was a distant memory...
There have been subtle signs that her OMS is active again for the last 1-2 months, however the last 2 weeks we've seen a regression that was seen at home and at school. Physical therapy confirmed her balance is off. Her B-cells are back in the normal range. Thankfully, Dr. E doesn't want to take the "wait and see" approach this year. We've seen this pattern one too many times to not take it seriously and treat Keira now.
The timing isn't great with Pablove Across America leaving Los Angeles on Monday, but this is exactly why we ride and push so hard to fund research. I will be at LPCH with Keira for the day long treatment this coming Friday. She will also start a 3-day steroid pulse that will last until Sunday night. Depending on how she's feeling I hope to drive down and meet the Pablove riders at one of the hotels so that I can still help support the riders the second half of the week.
To add to our stress, we also found out that our beloved Dr. Effinger took a position in Atlanta, Georgia and will be leaving LPCH next month. She's been with us since those first days in the hospital before we were officially diagnosed and has become a part of our family. While we are happy for her this is a huge loss for our family. We are grateful that she is here for the next month to help formulate a plan and transition us back to Dr. Twist before she leaves.
It's so crazy how quickly life can change.
As always we appreciate your love, support and ongoing prayers for Keira.
