Sunday, December 18, 2011

Here we go...

The last 3 days have been so incredibly fast. Linley is done with school for Christmas, Chad completed his finals and the whole house let it a huge sigh of relief. We deliberately chose to not make plans but to hunker down at home...playing outside, watching movies and eating ridiculous amounts of ice cream. This is how the Needham crew attempts to freeze time. How we step back and remind ourselves that life is about to get oh so very hard again and wouldn't it just be nice to cuddle? ' Cause it is.

Finally tonight we ordered pizza and watched Toy Story. The girls had a bath complete with splashing and wildness.
Laundry was folded, dishes were washed, the fridge was emptied and the trash was walked to the dumpster. We were packing up and planning to move on out...not happily. Resignedly. We will do what we have to to chase Pipers cure. We have to, there is no other option but it aches my soul knowing what I am about to put Piper through. And Linley as well in a less physical but equally emotional way.

So here we go. The next step closer to a cure for Piper. Of course, sadly, each step closer to her cure is a st farther away from our comfort zone. A new hospital, new faces, new procedures and lots of new worries and fears and unknowns.

Tomorrow morning at 7:45am, Piper will have a CVL placed in her chest. She already has a port but they prefer to use a CVL and this new one will be a "double lumen" meaning it will have two lines to be used at any given time. After surgery we will be admitted and will be there at Egleston in relative isolation for anywhere from 4-6 weeks depending on how Piper does. Beginning on Tuesday (through Thursday)she will have twice daily total body radiation and beginning on Thursday (through Sunday)she will have high doses of chemotherapy intended to prepare her little body to receive the life saving cells of some amazing Eurpean woman. She will have two days off to rest before transplant day.. Pipers actual transplant will take place on the 28th. And that's when we begin to wait...wait for her body to receive the cells and pray for them to take over any cells she had left...hoping this leaves her free to begin her life cancer free. She deserves it...

This transplant come with so many risks. Both short term and long term. I have neither the time nor the desire to think about what could be on down the road. I just want the option to walk roads with Piper someday. Short term, there are many risks...things I don't want to dwell on but that I heard loud and clear when I signed the paperwork allowing them to attempt to cure my daughter. It is frightening.

Beginning tomorrow I will blog every day. Or I will really, really, really try. I cannot guarantee that it will be an easy read but Im sure it's not going to be easy to live out either. So of you are squeamish, pass on reading for a few months. And I will most definitely be saying shit more often...both literally and in the figurative " my life is really not rolling the way I had planned" sort of way. Can you deal?

Now that I have explained things and shown off that I know how to use curse words I will ask for some prayers.

1. Minimal side effects with maximum results.

2. That Pipers cmv levels do not cause more trouble.

3. That Piper fully engrafts...begins making her donors cells.

4. That Linley works through all of this...she has had some candid cries lately and I know she is hurting.

5. A lifelong cure for Piper.

And no matter what, I know that I know that I know my God is able to do big things....I hope that He does them in my Piper.


  1. Susanna I am praying for y'all. Daily, hourly. I know I have not done much for y'all, but please know my prayers are with all of you. Xoxo

  2. Don't know what else to say besides we are praying, praying, praying. We love all of you dearly.

  3. 5 prayers everyday for Piper and Linley, and even more for you and Chad. We love you all so so much... if we can do anything please let us know!

  4. the morses are praying every night at 8pm when jackson says, "let's pray for piper, mommy!" ;) and all of the other times when you and your family flash into my thoughts...

  5. Susanna, we continue to pray for your precious family.