Posted on April 24, 2015
Posted on April 24, 2015I let this go for quite sometime. Most people follow her on Facebook, so I have been slacking....but for good reason!
We have returned from Boston, much earlier than expected. Thanks to an anonymous donor, many caring staff members, the good graces of this universe, and many supporters, Wynter had a successful transplant and is home enjoying a healthy isolation!
Posted on December 30, 2014
Posted on December 30, 2014As I write this, I sit in the family waiting room at Boston Children's Hospital. Wynter is having a G tube placed to replace her feeding tube. We return to Lisbon for the holiday, have another procedure in Portland, have one day to pack, and then we return to Boston to admit for real. It came so fast, and I don't feel prepared, but it's happening anyway! Forever thankful to the young woman in Germany trying to save her life. Get on the registry, donations are life savers!
Posted on December 24, 2014
Posted on December 24, 2014I would encourage anyone who comes on to this page to follow us on Facebook! I have been so much better about updates on there. It's: Shine On, Wynter. I post there at least a couple times a week.
We admit to Dana Farber on January 5th for Wynter's bone marrow transplant. We have a donor, a 22 year old female, who I found out today is actually from Germany. I may never meet her, but she is doing something more amazing than I could ever imagine. She could save my daughters life, and what better miracle is there than that? Wynter and I have made many many trips back and forth to Portland and Boston. Good thing she makes an awesome co pilot! All of our time between now and then is filled with tests and procedures, and it's taking a toll on her. She is tired all the time.
I was fortunate enough to be able to move in with family, and get the day to day support that's been missing. It's been just Wynter and I for months. The Portland area has given us many new opportunities including in-home nursing, and many choices for providers that we never had in Brewer. It's also a much shorter commute to Boston, a trip that she and I will make many, many more times. The support from family has been overwhelming!
Dustin and I are mid divorce. Great timing, don't you think? That's all I'll say about that, because it summarizes most everything.
Wynter and I stopped fundraisers a few months ago. They are very time consuming and this last stretch has been solely about her quality of life. My family and I have gone out of our way to ensure that Wynter is able to have peace and happiness every day we can. She is very happy, and has no idea how serious what's coming up is going to be.
We were able to do her Make a Wish, and it was everything she hoped it would be. She was able to sing Roar with Katy Perry! They flew us to New Orleans for her concerts, and it was absolutely classy every step of the way! What an amazing organization. Life had gotten so stressful and ridiculous, that is was so wonderful to put all that behind us for awhile.
Keep posted here, but mostly on Facebook, for more updates as we go through transplant. Pray for the best possible outcome!