Share. Connect. Love.

Posted 2016-07-29T04:35:32Z

Day +3 - maybe Lyla has super powers?

We are +3 days post transplant and Lyla is doing shockingly well! We are starting to wonder if she has super powers! Every child is different but normally by day 3 they are starting to decline because the impact of chemo catches up to them. The only sign Lyla has is some nausea but after a regular dose of medication that seems to be under control now. The doctors are equally surprised and very happy with how she's doing but have warned us that we should enjoy these days while they last!
Here's a few more details about Lyla's transplant for those interested:
Transplant day - happened on Monday, July 25th. Although it's a big event it's equally very uneventful because it's just like a blood transfusion. They couriered in the donated cord blood, thawed it, rinsed it of all the preservatives and triple checked it was the correct one. We will never know who Lyla's donor is (it's completely anonymous) but we did find out the cord blood was banked in May 2013 so the little girl is just 3 years old! Thinking about who she is will forever give me such an overwhelming sense of gratitude and amazement! The doctors confirmed she could be from anywhere in the world also!
Lyla received the transplant over just 25 minutes and it went perfectly. Doctors and nurses were in her room watching Lyla to make sure there was no reaction but besides being a little flushed she was totally fine! The only side effect was she smelled like creamed corn the rest of the day which is the odor from the left over preservatives in the cord blood.

The goal of transplant is to rid lyla's body of her own cells because they are genetically faulty (do not produce a critical enzyme that breaks down sugar molecules) and replace her cells win new healthy ones. Although the actual transplant was short, the whole process is long and spans over several months. 

So what now....
We start counting the days. We will reference +day from now until day +100 when we get to go home! Experience has shown that any major complications normally happen within this window and the most critical aspect is being close to a hospital and specialists.
100 days seems like eternity so for now we are going to focus on getting to day +21 which is the first key milestone. That's when doctors do the first check to see what percentage of lyla's cells are the donor vs her own. The goal is for engraftment (to see donor cells in Lyla's blood stream).
The 21 day horizon looks like...
The new stem cells immediately made their way to Lyla's bones and are already starting to grow. Days +3-7 is when the impact of chemo should start showing and we can expect a gradual decline over the next 2 weeks as her body becomes weak and she's feeling sick. After engraftment she should start on a gradual climb back up over the next several weeks.
The major things to get to day 21 is:
Keeping Lyla infection free. She's at high risk for any infection (viral, bacterial, or fungal) and it can easily get out of control since she has no immune system. Luckily they are testing her everyday and very quick to give medicine at the first possible sign. Some viruses linger in the body and make an appearance at this time but Lyla is showing no signs of any types of infection which is great and a big reason she's feeling so good still.
Next, we have to hope and hope and hope that her cells don't fight the donor cells and vice versa. This is called graft versus host disease (GvHD). It's pretty common to get some form of this during early stages of transplant and it's critical to keep it under control. There are some key warning signs the doctors monitor everyday. Because her donor cells are a perfect match luckily Lyla's risk for GVHD is lower!
We will keep you posted on our little warrior!

Stay in the know. Sign up to receive email notifications the moment new Journal entries are posted

Comments (8)

  • Daniel Ogunshakin
    Daniel Ogunshakin

    Brilliant news, guys! Lyla you are such a trooper! Can't wait to meet you in person! Hopefully your Uncle Dan will be sent to the Masters again next year and will then come and visit you for a few days (make it happen Fox)!

    9 years ago · Reply
  • Mari Ferrey Maturana
    Mari Ferrey Maturana

    Oh great news !! We will be thinking of you and can't wait to meet Lyla in December, she is a fighter! Sending lots of love and I hope the age cruises through the +days! Xxx

    9 years ago · Reply
  • Kathryn silvet
    Kathryn silvet

    Great news!! What a little trooper!! Love the updates and understanding more. Counting down the days with you. Thinking of you all everyday xx

    9 years ago · Reply
  • Hayley D
    Hayley D

    You are a title super hero! I know your mom and dad are so proud of you! Keep up the good work, girl! Love from Texas!

    9 years ago · Reply
  • Alex zold
    Alex zold

    Gooooooo Lyla!!!! She must take after her mum!!! 😀 She is such a super star! 😍

    9 years ago · Reply
  • Suzanne Ruseell
    Suzanne Ruseell

    That's great news, such a strong little girl. You're all always in our thoughts 😘😘 xx

    9 years ago · Reply
  • Rita saupin
    Rita saupin

    Lyla and of course both you and Steve have SO much support , sure the prayers too are in sackfulls. Your many many friends around the world are with you every step of the way. Keep fighting Lyla, keep surprising those amazing medics. You will get there. Love and hugs. Great nana xxx

    9 years ago · Reply
  • Lauren
    Lauren

    Amazing news Guys. So pleased to hear that all has gone well. Keep thinking of you and keeping everything crossed that all goes well. Lots of love. Lauren & Joe. Xxx

    9 years ago · Reply