Day 16

Piper continues to have fevers which go frighteningly high. Strangely though she is still pretty perky and happy and not bothered by it and her vitals stay normal. Just to rule out something fungal, she had an CT scan done today which revealed healthy and fungus free lungs...very good news. Piper also impressed me by obeying me so well and staying still during her CT scan and not needing to be sedated. I was not expecting that but I was very proud of her little self wrapped up there on the machine and watching me.
The fevers can be one of two things now ( unless something shows up in her bloodwork that hasn't in the last 36hours). It can just be a sign of engraftment and is totally normal or it can be a side effect of worsening CMV numbers. Because she is having no other problems, Dr.Chiang is not yet concerned. I'm not either because I learned a long time ago that there are very real and present things to worry about so I will worry about CMV if and when it produces problems.
Piper has been asking for water a lot today as well as eating those little Gerber puffs... They melt in her mouth so I figured I would start there until her mouth is sore free. They do not want to to replaced the NG tube and hope that she will begin eating and drinking at least minimally soon.
Counts continue to wiggle, not jump. And her rash looks the same if not better. I am hoping and praying it stays stable if indeed it is graft vs host (which they think it is) because they treat graft vs host with steroids and that is the last thing she needs with having already activated CMV.

It dawned on me today how much I am actually enjoying this season. And no I am not drinking to excess at the moment. There is definitely a worry and anxiety that comes from being in this setting and being apart from your entire family but this is proving to be a special time for myself and Piper. Thanks to the time and generosity of friends and family and loving strangers I don't stress about Chad and Linley at home and an able to simply focus on being with Piper. It's not unlike those first few weeks home with a newborn who relies solely on you and is fantastically needy and yet...somehow you miss it when they do sleep through the night and when they do accomplish tasks without you.
I pray fervently that my time with Piper is filled with all the moments and dreams I had for her when I rocked her so shortly after her birth but I fully appreciate this (supposed) to be heavy time for the joy that is is at this moment. If I don't have another 20 years to hold her... I will even more love these sleepless nights and slow days.
But I still do plead and ache with God for her healing and for life and for a future...nothing will stop me from that no matter how sweet the moment.

Flashback (Happy Re-Birthday Piper)

The big day has come and gone...call it Transplant Day, call it Day O or call it her Re-birthday but I'm hoping to call it a miracle and the beginning of the rest of a healthy and happy life for Piper.

It was just as simple and anti climatic as I had desired. A bone marrow transplant is not an invasive procedure but rather similar to a blood transfusion. This means no surgery or sedation and she was able to play, snack and sleep like normal through out the entire 5 hours infusion. Piper was watched very carefully throughout and even for a few hours after...praise God, all of her vitals stayed normal and she had no nausea or vomiting or reactions in the least bit.


Piper Jean Needham, you are amazing, I pray daily for your future. I pray hourly for your blessings and I pray each little moment for you to simply have life...someday I pray you will live it abundantly. Until then we will carry you, we will love you and ache for your cure. Twenty-nine months ago I eagerly labored for this sweet child in the first place. There was much fanfare and much rejoicing over her delivery. God willing this date will be just as pivotal as her birthday. One date brought her into my arms and the other helped keep her here.

Flashback ( December 27,2011)

This was just mommy and daddy time with Linley. We had some free passes to the Georgia Aquarium and used the ever amazing Nana to hang with Piper while we spent some one on one time with our favorite six year old. She was the perfect age and loved it... It would have been a wee bit hectic taking a non walking two year old into that place but Linley is always our chill and observant kiddo ... Which served her well in this place. Linleys favorites were the otters and and the penguins while Chad and I just about fell asleep in the last display. This part is a huge atrium style fish tank where you just sit in the dimmed room and watch sharks and turtles and other sealife coast by you. Absolutely amazing.

First we ate at Johnny Rockets for burgersy, bacon cheese fries and some amazing milkshakes. So good.

Flashback (first week at Egleston)

Busy was what this week was. Piper was occupied each day with radiation, chemo, different therapy sessions and just being a typical two year old in a very atypical setting.
Very few side effects meant only more good times with our girl.

Flashback (prepping for transplant)

... And by prepping I mean doing anything we could to keep our minds off of the inevitable. The Needham crew was to be dismantled for a few weeks only to be placed back together again once Piper had begun to heal. This is still our heartfelt prayer as we close the gap on a month apart...
But in this sweet time we lived. It was good. Chad and Linley were both out of school and Piper and I were happy to have then home with us to play and run around. There was much staying up late eating ice cream, enjoying FaceTime with Nana and Gpa, sleeping with mommy and daddy, making messy, messy and still yummy teachers gifts, experimenting with new make up kits and of course, the many happy hours spent with a fancy new dollhouse and play kitchen. Chad and I spent a lot of time watching the girls and smiling...you know, like normal parents do but without the worried twitch that we seemed to have acquired.

Flashback ( Merry Needham Christmas)

We intended for our little family Christmas to be the big one...that the actual day we would have less gifts and less smiles. Thankfully we were wrong but we still enjoyed doing our own thing anyways. Linleys main gift was a doll house and Pipers was a play kitchen. Chad as usual got the honors of putting then together but unlike previous ( and real) Christmases there was no midnight mass to watch. Poor fellow toiled though and it was a labor of love and hope... That soon Piper would be home for good to play with hers and that Linley would know we are indeed hearing her little hearts desires.

Flashback (Merry Needham Christmas Eve)

I was given an ipad/blogger tip today from a kid I used to babysit way long ago. I'd love to take credit for this kids brains but I am afraid all I did was take him for walks and read to him so it must be his parents fault he's a smartie. (Either way, thanks a million Joseph)

Because hopefully I should now be able to add pictures to my posts, I am going to be doing a few flashbacks. This is my way of keeping track of the sweet way we are doing life so if you only want an update on Piper just ignore any "flashback" posts. You would be missing out big time though.

Because we knew Piper would be inpatient and that Linley would not be allowed to visit at Christmas, we did our own thing. This is the Merry Needham Christmas Eve that we did and it was so sweet to see the girls wearing those matching jammies. This was the first Christmas we have had that felt complete and good and right...relapse and transplant a'coming be damned.