LOVE FOR LUCAS
Hello ironyx, so you did that post last year for your girlfriend’s nephew and his family (if i remember the connection correctly). I remember at the time I didn’t really have any money to donate, but I joined the bone marrow registry as a way to sort of feel like I helped. I got matched up with a woman a month or so ago, and will be donating bone marrow on Friday (8/17/12). I figured you might like to hear that your post will end up helping more people than you might know.
Love this!
First Nemours Clinic Visit
On Thursday, we had our first visit at Nemours for labs. We met a few members of our “new” team. Overall it went well. Lucas’ labs looked good. His FK Level (Tacrolimus) level was low, so they increased the dose. This is pretty typical, and we have been working on getting his level “right” for weeks now. If we can get it stable, we will have to go for labs and clinic visits with less frequency, so we are hoping that it stabilizes. We will be back to clinic on Tuesday for labs and to meet Dr. Joyce.
Home Sweet Home
We made it! It takes us 10 hours, no matter how we do it, but we made it. Luis drove one car with all of the “stuff” and I drove with the boys. They were really good on the drive, I am still not sure how I got so lucky? Liam slept for quite a bit and Lucas kept himself entertained, reading books, watching movies, and playing with the Ipad.
When we got home, the boys ran around the house from 8:00PM to 11:00PM in pure bliss. They were rediscovering their rooms and toys. We allowed them to make a mess, and play with one another until they were ready to drop.
Being here brings a lot of emotion. I feel so incredibly fortunate to be here in this house with both boys. There have been two times in Lucas’ life when I looked at his bedroom and wondered if I would get to bring him back to it, and thankfully both times the answer has been, “YES!”
Being back in Jacksonville is a big milestone in Lucas’ road to recovery. His journey is not over yet, and we are constantly reminded about the precarious state of health he is in and the need for our vigilance to continue. We hope that we can continue to keep Lucas safe and well and that he will continue to make positive progress.
For now though, in this moment we are thankful. Thankful to friends, family, strangers, Duke University Medical Center doctors and nurses, that we have made it to this place in Lucas’ recovery. I had no idea what this might be like, in some ways it was scarier than I imagined and in some ways it was nicer. Tonight, on Day +139, as I sit here and type I just feel lucky, really, really, lucky. <3
Last Clinic Visit
We had our last clinic visit on Thursday at Duke for a few months. It was exciting, sweet, and a little sad. No sad in a bad way, but we have come to love so many of the people there, it is a strange feeling to say goodbye. They have cared for Lucas in a way that is indescribable. They are patient and kind, they let Lucas be Lucas and they always tell us how much they love him. We really could not have asked for a better experience.
Lucas got to do art, and he gave lots of hugs. Lucas got a dose of Pentamadine and got his Tacrolimus levels checked. He did not require IVIG yet, something that we will probably be getting soon back in Jacksonville.
I had the lucky task of getting all of his prescriptions transferred and everything organized to go home, and right now it feels as though everything will work out well. We have started talking to Lucas about going back to Jacksonville to the “red house.” There is so much to do to get ready to go, I am not sure where to begin. Luis and I are pacing ourselves, because despite all of the packing and cleaning, the boys come first.
Lucas’ hair is growing back quite a bit now, and looks really cute. It was mentioned that his hair may change, but it looks like it is growing back just as it was pre-transplant.
More to come, as we make the journey home!
Cleaning
In order to be able to go home to Jacksonville, A LOT of cleaning needs to happen. We have not been there for 6 months and before we left we were so overwhelmed with finishing work, packing, and leaving that we were not able to leave it as pristine as we would have liked. Thankfully, there are AMAZING people in this world who help when there is no way to do what you need to do.
My sister organized and gathered a group of friends to clean every toy in our home. Wash, bleach, Clorox wipe, repeat! Lisa washed all of the boys stuffed animals, organized every toy into a category and got it done. It is such a relief to know that when we arrive home we will be able to just let the boys play without the worry of germs.
Besides the just the toys, there is a whole house that needs to be cleaned. Thanks to an organization called, “Cleaning with a Meaning” (http://cleaningwithameaning.com) our entire house will be clean when we get home. What a blessing, we could not be more thankful!
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!
Week 25
Lucas’ clinic visit went well this week. They used his port for the first time. We applied emla cream in advance to help numb the area. He was nervous and cried before they connected the catheter, but overall it went well. I think that it was the best decision we could have made for him and will overall be less painful than having to get an IV stick every time he needs something. His chest area is healing and looking really good, just over a week after his surgery. Next week we will be able to take off the tape that is covering his wounds and then it is BATHTIME!!! We have been giving Lucas showers for the last 5 months, so he is going to love a swim in the tub.
Lucas’ hair is really beginning to come in now. He is starting to look like he might have a really short buzz cut! It is nice to see it coming back, definitely worth celebrating. This is another milestone on his road to recovery. We have begun brushing it (softly) in the evening and he loves it.
This week Auntie Julie came to visit again! It was really nice. I was feeling pretty lonely, so it was nice to have a friend to do some things with! Durham has some really great food trucks, so we went to a small food truck rally that was going on and had some yummies. The boys enjoyed seeing her, and it was a great break in the monotony.
We were contacted this week by a volunteer from Make-A-Wish. We are really looking forward to meeting her back in Jacksonville. It looks like Lucas is going to have a wish granted. So exciting! Many thanks to our social worker, Jennifer, for all of her work on this. There will definitely be more to come as we learn about it.
The boys are still keeping busy with trains. Lucas is getting really good at making track configurations. Another interest that he has developed is dinosaurs. He officially knows far more about them than I ever did! He has begun trying to understand how they were all named. One night this week he sat down with me to tell me that “an Argentinosaurus is named because it was found in Argentina, but that a Spinosaurus is named for his spines, and there is no place called Spino.” It is so amazing how he develops interest and then asks questions, and absorbs information.
Not so public, public outing
We decided to take Lucas for a walk out in the world. We went to the American Tobacco Campus, here in Durham very early on Saturday morning. It was a beautiful warm morning. There were very few people there, enough to count on one hand. It is a really open space, and was a nice place to walk around early in the morning with no crowd. Lucas wore his mask, hat, tons of sunscreen, and of course, we had hand gel ready to go! He enjoyed it and we concluded that it was a safe and nice thing to do!
Party On Purpose
Back in January, I wrote about Le Poppy Design, the company that provided decorations for Liam’s first birthday. When I found their beautiful decorations (10 days before Liam’s birthday) I sent Michelle, the owner a message begging her to squeeze me in! Not only did they do that but they said “the party is on us” when I apologized for the late request and mentioned that it was because we were getting ready for Lucas’ transplant.
Le Poppy Design is now Party On Purpose (http://partyonpurposeshop.com/)! They have the same beautiful handcrafted party decorations with a new heartfelt mission.
This is from their site, “We believe that every child deserves to be celebrated. We also know that life happens and that sometimes situations present themselves that financially prevent those celebrations from taking place. That’s why a portion of every single party we sell goes toward the Party On Purpose Project – or POP Project. Along with donating POP Party Packs to our local food bank (more on that soon!) we are committing to providing at least one party for a family who otherwise can’t afford it, each month. Anyone can nominate a birthday kid; we even have a form to make it easy on you. This is our way of paying it forward – or as I like to say partying it forward.”
Liam’s party was their first “POP Project” and there is a blog post dedicated to it: http://partyonpurposeshop.com/portfolio/a-customers-special-request/
This is such a great example of the impact that anyone can have when they choose to do so. Be sure to check out their blog, they make the most beautiful things! I can’t wait to plan Lucas’ fourth birthday (the dinosaur theme has already been requested) with some special touches from this shop!
Lucas’ donor was a baby girl whose family, just like the one in this video chose to donate their child’s umbilical cord. With that decision, they may have saved my son’s life.
The video shows the Carolina Cord Bank and the Transplant Unit.
