Please keep Keira in your thoughts and prayers, on Tuesday she will go back on treatment for her OMS. This time we will be trying a new drug called Rituxan which we hope will offer longer-lasting effect over Dexamethasone (Dex), which is the steroid that Keira had been using in the past.
This will be new territory for us.
Since the end of September we've noticed a slow build-up of behavioral issues, mood changes, increased anxiety and a decline in her school work. It all felt too familiar, and was pretty much the same pattern we experienced last year before we had confirmation of her relapse in May.
At that time we decided to re-dose the Dexamethason in a full strength, three-day pulse. As we anticipated, the Dex had an immediate effect on Keira, however, it only truly gave her a 6 month symptom free period followed by 3 months of us all feeling like something was off but not having the confirmation that it was a relapse that warranted strong meds.
Rituxan will deplete her body of B-Cells which leaves Keira more immunocompromised than she was on the Dex. The hope is that if we "erase" her immune system's memory it can "re-boot" slowly over the next 6-12 month with less memory of the OMS antibodies that cause Keira to have symptoms. We don't know if only 1 cycle will be enough but Rituxan has become the standard treatment protocol for newly diagnosed OMS patients. Keira's doctors feel strongly that this is what we need to try next, and we agree.
Why not both Dex and Ritux? That's exactly what I asked. The doctors want to be certain Keira is responding to the Ritux and if she isn't we can add the Dex, but they felt that we need to be certain which medication is working. Again, as her parents we feel like we just want her to get some relief and feel like herself again, but we trust our doctors and know they have her best interest at heart.
Rituxan is a significant step up in treatment intensity compared to Dexamethason. It is a drug that needs to be infused very slowly through an IV. We anticipate 10-12 hour days at the hospital for Keira to get her medication. The current protocol is to do this infusion 1x a week for 4 weeks.
As her parents, that is the most frustrating position to be in... we know that something is wrong and we have to wait for it to get worse before we can treat it! This is exactly why we continue to fund research for this disease.
Even last May, we knew then that if her symptoms came back, we would want to try Rituxan to give her body a better chance at a longer-lasting remission. We've been on the cycle of Dex for 2+ years now, and while it works, it's clear now that it's only a temporary band-aid.
Keira continues to be an endless source of courage and inspiration. In many ways she has figured out how to compensate for symptoms and tries hard to do things she used to be able to do, rarely complaining, but increasingly we see her struggling and it's heartbreaking to watch. We've been doing our best to live our lives as normal as possible through all of this but in the past few weeks we can all feel the need for something more to be done.
It's unfortunate that Keira has to begin this treatment with Christmas being just a few days away, however, we're looking at it as a chance to be with her and help her get through her first two treatments without the worry of work. We're happy to be with her, fully present while she goes to these treatments to get back to herself again.
Many thanks for all the love, prayers and support. We know that you have been thinking about our sweet girl and will continue to through this next bump in her journey. Positive thought for the next four Tuesdays that she does not have any allergic reactions or complications and and that she tolerates the treatment without severe side-effects.
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