Not my plan of course. Somehow MY plan got derailed about the time I became a grownup and realized my parents were (surprise! surprise!) smart and telling me the truth when they said being a grown up was some hard work. My plan involved holding hands with my love while watching many little blond children run the backyard. It involved days filled with playing, baking, gardening, rearranging and teaching...not cancer and the steamroll of a path that it has made through such a simple plan.
Nope, my plan is on hold as I am learning ever more that holding onto the Big Guy is infinitely more important than I had ever thought possible. Not that I don't continue to have plans...somehow though it seems like someone else is making those plans for me an awful lot. And not that I have as many options anymore and not that I have the capability to make choices clearly very often these days.
(that goes for everything. Should I have more children? Should I shower? Should I argue with Linley about math facts? Should I eat pizza or subs for dinner? Should I buy a big thing of laundry soap or a small one? Should I shave Pipers head? Should I do this, that or the other thing?)
Should I move with Piper to Memphis, Tn to be treated at St. Jude?
What?
Yes, that's the plan that we are a hatchin'.
There are doctors at St. Jude who have more options for Piper than the few we have been offered here. Here we are told that unless Piper can get to remission using the traditional chemo they are able to offer she will not be eligible for transplant. And even if there is a transplant that takes place there is little chance that the leukemia will not rear its ugly head and cause Piper to relapse yet again. St. Jude has experimental but positive evidence that there is an other option for children with high risk leukemia like my Piper. There is an article about it here
So the plan is that Piper and I will be going to St. Jude for a consult once her counts begin to recover from this round. When will that be? Who knows...hopefully within the month. And the rest of the plan is entirely contingent on what we are told during our consult and what Pipers leukemia is doing. I am certain that if Piper is taken on as a patient we will be there in Memphis for a few months as she goes through all the treatments prior to the transplant as well as the recovery from the transplant.
Chad will not be able to go. Linley will not be able to go. I am going to learn a whole different mode of mothering through technology at best. This is crushing me...I cannot tell you how much. We have chosen not to even tell Linley of this option until we know for sure what we will be doing and in which way this will effect her, as I am certain it shall throw her for a loop. Heck, I'm trying to not worry about not being with my sweet Linley for multiple months until I know for certain that this has to be the plan.
So there you have it. A plan. Its tentative at best but its got potential.
Potential is good. Leukemia is horrid. And this mommy is heavy hearted at the moment.
St. Jude is a really good hospital, and I fully believe you are making the best decision for Piper at this point. We have had our share of 'problems' and such with the doctors here as well, which is why we are planning to move to FL. I can't wait to hear what they plan to do for her. *Hugs* God is taking care of you guys...
ReplyDeleteThis must be so hard on you and Chad to be even thinking of spending time away from one child. We will continue our prayers for you. I am a strong believer of God's plan too and will continue to believe in them alongside you.
ReplyDeleteSaw linley's soccer pics....still remember her from a couple of years ago....they grow up so fast'
Take care Susanna
Love, Mu and family
Praying for you!!
ReplyDeletePraying, praying, praying.
ReplyDeleteI know this time for you seems out of control, remember... "He who dwells in the shelter of the Most High will rest in the shadow of the Almighty."
ReplyDeleteWe love you, and continue in prayer.
mj