New plans, old plans... Im learning each day to be flexible. And no, I don't like it. For once in my life I must say that I am craving security. I want a house with well worn paths through the living room, a garden where the same flowers bloom each spring, a dog that my girls can hug at night when they curl up on the couch. Each morning I want my biggest complaint to be a lack of sleep due to a pinterest addiction not the multitude of needs that revolve around a child dealing with cancer... And definitely not a child who has exhausted all traditional modes of treatment.
I dream of stability.
Meanwhile I am attempting to wrap my brain around the fact that this leukemia is as aggressive as it has proven to be. That we have been told to take her home and keep her comfortable and love her. I'm not ready for that...none of us are. Piper is well. She is not entirely herself but she is a long way away from succumbing to this beast.
And for that reason we are heading to St. Jude. Chad and I had a phone consult on Tuesday with Dr. Leung and it went well. Because this is an active clinical trial he cannot tell us facts or statistics...he was very clear though that the study has been active for 3+ years and if success were not prolific it would have been shut down a long time ago. We were concerned about Pipers large amount of disease but he was emphatic that this study was geared towards children who have had three, four even five relapses. They do not use huge doses of chemotherapy because well, it didn't work the first two times and that goes for radiation as well. Pipers actual hospitalization time will be minimal which will allow for time as a family and normalacy. And the age policy at St. Jude is seven unlike the 12 at Children's...another way that Linley will not be excluded. Because this protocol is very different than anything we have ever tried we are optimistic once again...
Did I just say I was optimistic?
Have I forgot the hellish turn my role as a mother has taken lately?
No. But it's difficult to not feel the hope they are doling out up there at St. Jude. Also, we have no other options...none. And I really am not okay with watching my daughter die without this last attempt. I'm not... So we go.
We will leave on Monday. Hopefully, all that this family of 4 will need for moving three states away for anywhere between 3 to 5 months will fit into my Camry. Hopefully, Linleys school will be able to work with us as we attempt to keep the girls and this family as physically together as possible. Chad is working out the details of dropping his classes at UGA without penalty and we are still in the process of choosing what to do with this apartment of ours which will be vacant the majority of the next few months...Chad wants to keep it and I want to let our lease go and save money and hassle. We are hoping that details work themselves out for the simple fact that we are running on empty.
For those of you who do not know about the NK cell therapy it is a way of using my natural killer cells to fight off Pipers leukemia when given to her in large doses after small amounts of chemotherapy. She will receive this and then shots to keep the NK cells active and fighting while we await her stem cell transplant. I will be Pipers donor and thus this upcoming week will be busy for both of us undergoing tests and such to ensure us both are in well enough shape to proceed. While optimism is renewed we are cautious...
Too many times Piper has done better than imagined or expected and yet, here we are. Its tough to not be overwhelmed with the whys and how's of the next few months but at this moment I an only feverntly praying we will have more months with Piper. That this will be the Cure that she deserves and needs so much.
Prayers are coveted. The decision has been made and we are at peace with it...that does not mean that it will be an easy process. As before, we will make it day to day and a step at a time and hopefully, prayerfully we will help Piper achieve her cure.
I really would love to have time to work on my pinterest addiction a little more, after all.