Home is not so far away!
Well, I think it is close enough to confidently say that next Thursday is going to be Lucas’ last clinic visit for awhile here in Durham. Dr. Parikh has agreed that it is safe for us to go home. He has connected with Dr. Joyce at Nemours in Jacksonville (https://www.nemours.org/patientfamily/findadoctor/biography/2392.html).
This is a big decision, one that we do not take lightly, and it we did not feel that his medical needs could be met, we would not go. But, Wolfson Children’s Hospital (http://wolfsonchildrens.org) has a pediatric transplant program, so they are prepared to take care of Lucas’ post-transplant needs. Lucas will have to come back to Duke at the 6, 9, and 12 month marks for lab studies. The months of September, December, and March will all involve a trip back.
Needless to say, we are super excited to be able to go home. Our house, family, friends!!!
There is more to do to get ready than I can put here. I am making lists, multiple!!! We will have been here for 6 months by the time we head home. We are so, so, so thankful that this is the case. We planned for 5-6 months, and that is what we were able to do. We have met so many families that end up being here much longer.
On some levels I can’t believe that it has been 6 months, and on the other hand, it feels long. It is a strange feeling. Luis asked me the other night if this has been the best year of my life. In so many ways, I think, “yes!” I learned about the incredible generosity of others. We were able to give Lucas a chance at a cure and a long healthy life, and we spent this time as a family. It has been scary, joyous, crazy, and lonely… but most of all… it has been okay, thank goodness! Home sweet home, here we come!