Tomorrow morning, much too early than we prefer to be up, Chad will be taking Piper into Atlanta for her lumbar aspirate. This is the procedure in which she will be sedated and marrow will be removed from her lumbar in order for it to be checked to see if she is in remission yet.
When Piper first was diagnosed I remember feeling very much like "of course she will be in remission". When Piper relapsed I remember feeling again like "of course she will be in remission"...at this point I sincerely have no clue. No inkling or idea.
Each visit to the clinic Piper has a CBC done and we pray her counts continue to show no leukemia in her blood work, though we still know it is hiding somewhere. If she is low on platelets or hemoglobin she will have that transfusion. During the sedation they will also check her central nervous system since there has been cells there in the past. She will not be receiving any chemo in order for them to get as clear of results as possible. Piper's CMV levels are also monitored because with no immune system she is at a high risk of a recurrence and well, that was a ridiculous thing for her to fight off the first time much less attempting to go into a transplant.
We usually get results in 2 or three days so we could have results Friday afternoon but I don't expect them until early next week. And as usual, we don't know specific plans for the near future until we know what her body is doing. And yes, this is slightly nerve racking. Slightly.
What we do know:
1) chemotherapy is no longer the cure for Piper. Her leukemia has outsmarted it.
2) St Jude is still filled to capacity. They cannot guarantee us space within 2 months.
3) Irregardless of tomorrows results, we need to get the girl to a transplant. Soon.
4) She has a "perfect match" who is ready to donate at any time.
5) This match means treatment will be done here in Atlanta.
Short answer...yes, I am very nervous. The treatment at St. Jude is better, more effective. It is definitely our first choice despite how crazy it would make our lives for a few months. A traditional transplant at Egleston was our back up plan. We are still hoping and praying for a room to open up but the fact is that Piper needs to have a transplant soon...if we were to wait two months they are certain that she will only have more leukemia at transplant rather than less making the chance of success limited.
While I was complaining about this to a group of friends the other day I was reminded that whatever happens is actually Gods first plan. It is what He wants to happen, irregardless of what I want or what we feel is the best move. So with that in mind we are just praying now for clear direction. Whatever the best option is we want to know for sure and not be left making decisions too big for us to handle.
As for now we are enjoying the time at home. I love the simplicity of preparing Linleys lunch the night before, of making chili with Piper during the day and playing outside with the girls after school. Just going to the grocery store and not stocking up on ready made meals and purchasing food to make a homemade dinner is a great feeling. Not surprisingly, cleaning the bathroom is not nearly as fullfilling which explains the fact that I just dont plan to clean it. Im feeling lazy like that.
The death of sweet Tyler last week was a huge wake up as to what we are fighting against. It has frightened me and worried me and caused me much stress...that being said, I am attempting to remember that this is not in my hands (or fears) at all and that the results of the next few months are not up to me.
Piper is in Gods hands as are myself, Chad and Linley.
This is a very good place to be.