Wednesday, October 5, 2011

When something works out for once

Remember that time that I felt ridiculously downtrodden and wanted something, anything really, to work out for us? And I am easily impressed so this could be as simple as free parking at the hospital or as fabulous as a call saying "whoops our mistake, there was no leukemia in your daughter. Don't call us, we will call you".

That would be on par with Jesus's return, another event that I am certain will make me a little happy and not find myself wishing wine tasted like coca-cola so I could drink my sorrows away as I often want to do.

Rabbit trails? I know. Read on and see how something worked out for us, for once.

It was a long day in Atlanta and while Chad and I are very well acquainted with Scottish Rite, the Egleston campus was a whole different (much larger, more expensive) world. It took us a minute to find parking much less the way to the clinic. And while at the clinic it was confusing because they do things differently and we were totally getting the same look we give to people we see at Scottish Rite who look confused. Happily Piper did wonderful throughout the exam, throughout our meeting with Dr. Haight and in spite of the fact that walking around was not entirely possible due to space and health stipulations for the transplant patients.

The meeting went okay at best. Chad and I both left feeling a little less optimistic. In normal person language, Dr. Haight felt like Piper will need to be in remission or at the very least, under 1% MRD (minimal residual disease). With even the two percent she currently has she will probably not survive a transplant as well as the risk of relapse being almost definite. They are still weeding through the Bone Marrow Donor list, which is a total of 11 choices as well as the Cord Blood Donors who number 8. Dr. Haight would rather use a BM donor especially since another round of chemo is necessary and we should have a little more time to whittle the donors down into the best match. While she was very knowledgeable and kind, she was very matter of fact that Piper will need to meet the remission requirement in order for her to proceed.

Obviously that was not the thing that worked out for us. While we were at Egleston she had a CBC done to see if the leukemia was yet showing up in her blood work. If it had they would have been beginning chemo inpatient asap and things would be getting a little crazy once again.

Praise God.

Its not.

We are home. As in the apartment we pay rent at, not the hospital that we abhor/love because of what the people we know are doing to Piper there. As far as her blood work goes her little body has no idea that cancer is in its midst. So after a quick call to Scottish Rite we were sent on home. Music to my ears. Makes me want to dance. Big, big, big smiles for me...and tears, of course.

(Because its Tuesday and that's the scheduled day to sob regardless of location)

Tomorrow we will begin oral chemo at home twice a day for the first seven days of this new 28 day round. On Friday the 14th we will admit back to the hospital for Clafarabine and ARA-C on days 8-12 and she will remain there as long as they deem necessary (but hopefully not another six week stay) while continuing to receive the oral chemo but nothing else. After her counts recover at the end of her round she will have another bone marrow aspirate and hopefully at that time she will finally be in remission. I am not certain what would happen if she still has MRD but I am sure it will not be a good sign.

I was so blasted excited about being home for an entire ten more days that I bought the girls a new bedroom suite that (of course) needs to be stripped and repainted. You know, since I have all this free time. Today was so totally busy but in that happy way. I managed to plant mums, clean my floors, visit both Walmart and Trader Joes after doing the morning carpool, sand the new dressers, visit with my in laws and make a whole chicken in the crock pot for dinner. Mostly, I loved on my girls.

I have always loved the simple business of being a mom and I live for days like these where I am only nurturing, loving and being with my favorite people in the world. The hospital seems so very far away and for the next 9 days I shall pretend it doesn't even exist.

This really works out for me.


  1. I think you and I could be BFF...let's face it if you are going to buy bedroom furniture, or any furniture for that matter, it needs to require a little TLC. :) Rejoicing with you in the simple things that these next nine glorious days bring! Can't wait to see how the furniture turns out. Oh, and I meant to respond to your post on my blog...last week I almost stopped in at Scottish Rite to see you after our appointment with Dr. S but I decided that after sitting in the waiting room for over an hour at Dr. S's office I didn't want us to pass anything off to Piper! Again, praying for sweet moments over this next week and a half.

  2. Thank you God for giving Susanna something for which to be thankful. LOVE!