LOVE FOR LUCAS
Baby Daniel Craig? Lol!
It is rare these days, that I have a moment to blog. We are one busy family! Life has slowly been moving more towards “normal”, which we could not be more thankful for - but it leaves little time for reflection. A lot has happened since Christmas (the last time I blogged).
On January 25th Liam celebrated his second birthday. He has been talking so much and is growing so fast. He is Lucas’ best friend and they play so well together. Given that Lucas still has limitations regarding playing with school aged children and children in daycare, Lucas is really lucky to have a little brother! He is such a joy and I can’t get enough of his little face and toothy grin!
On March 14, 2013 Lucas celebrated his 1 year post-transplant anniversary. March 14th is Pi Day, so we celebrated with some pie. This will be our family tradition for many years to come.
Luis and I celebrated 10 years of marriage 1 day later. WOW, that went fast and it is amazing to reflect on how much “life” has happened in that time. 10 years later he is still my best friend and greatest love, and that makes me feel lucky!
Easter this year brought lots of hugs and tears. I was feeling frustrated that the boys were not participating in a big egg hunt or sitting on the Easter Bunnies lap, and then I began looking at pictures of last Easter - and was quickly reminded of how lucky we are. As a matter of a fact, I think this Easter was the best of my life. Both boys, baskets, eggs, Lisa and Dave, and a simple brunch in our home. It was great. There will be many egg hunts and Easter bunnies in our future, and I can’t wait!
Today Lucas and I are at Nemours and Lucas is getting IVIG, something he is still requiring. We are getting ready to travel back to Durham for Lucas’ 1 year post transplant evaluation and are hoping for good news. Lucas is still having skin trouble, so that will be evaluated. This visit should bring more clarity on where we are in this process and how much longer until we can think about Lucas getting to join a school setting, engage in a group activity, or go places in public - mask-less or with a mask? No matter the news, he is doing well and he is in our arms. <3
As The Takeaway explores stories of gift giving and gift receiving on Christmas Day, a rare act of generosity changed Beth Gonzalez’s perspective on the notion of presents. Her three-year-old son Lucas was born with a rare genetic immune disorder, called Hyper IGM Syndrome, which required Lucas to undergo surgery last year. Even with health insurance, the family was not sure how they would manage paying for the operation. That’s when they turned to the social networking site Reddit, where they posted their request for donations. Within hours, donations came pouring in from around the world.
“The world helped him. They essentially saved his life, gave him a long life,” Gonzalez said. “I hope that helps him become someone who inherently wants to help others.”
Happy Holidays to our friends around the world! We are thankful this year for each of you and for the great progress that Lucas has made this year. We encourage you to embrace each day of this New Year and keep working to make this world a better place!
Beautiful photos were taken by Stephanie Knowles of Jaiden Photography: (http://jaidenphotography.com/). Stephanie provided our family this session as a gift, and we could not be more grateful!!! Thank you Stephanie <3
Love this! Although Lucas’ transplant is about chipping away at each of these things to the point where he won’t need them anymore, we are not there yet. This is SO the life of a child with PIDD. From the moment of birth or diagnosis, this is the ”norm.” My wish for this holiday season is that advancements in the medical field continue to grow to help more and more children who suffer from PIDD have an easier path to a healthy long life!
Photo of our family with Santa Claus! I still cannot understand how he fits so many visits into his December schedule!?! This was taken at the Jay Fund Christmas Party (previous post). They were kind enough to mail us a copy of the photo.
Tom Coughlin Jay Fund Holiday Party
The Family Support Program for families in Jacksonville, FL of children with cancer and who have had transplants is led by the Tom Coughlin Jay Fund. Since joining Dr. Joyce and his team we have received a number of invitations to events, but have never participated. We have overall felt very leery of engaging in anything that would pose any kind of risk to Lucas. That said, we were really encouraged to attend this event and chose to go. We were one of the first families to arrive, and we only stayed about an hour. Lucas wore his mask and was the first child to ride one of the ponies. The boys got to sit on Santa’s lap and they also each got a gift from Santa’s Toy Shop. There were Pirates everywhere, and when we got home Liam was saying “Arrrrgggghhhhh” for hours! They boys had a great time and it was a really nice event. It is SO wonderful that organizations hold events like this for families like ours. Looking around it was incredible to see the number of children, here in our own town, who are battling cancer, and fighting for their lives. Children should not have to deal with things like this, it is so unfair. One of my goals once Lucas is at a point where we are only going to Duke once a year is to support families in helping their children in the same way that SO many people have supported and helped us!
It was a great kickoff to the holiday season, and I am glad we went.
Here is a link to learn more about the Tom Coughlin Jay Fund: http://www.facebook.com/tcjayfund?fref=ts
Hair Growth!!!
Look at how much hair Lucas has now! I actually think that he needs a haircut. His hair is different than it was pre-transplant. Before he lost all of it, his hair was pin straight. His hair is now wavy and a lighter blonde. We were warned that it might look different - so we were prepared. Overall it is still a little on the thin side, but each week it is filling in more and more.
Thanksgiving
We celebrated a very simple Thanksgiving with just Lisa and Dave. It was one of the best of our lives. We have SO much to be thankful for this year. Most of all is the fact that we are a family of 4, this year, just as last. The boys are growing and Lucas continues to do well. Every time I stopped to think of all of the things we have to be thankful for, I could not help but cry.
At the very end of the day, Lucas and Liam made a song… Enjoy!
Lucas Forbes
Lucas is mentioned as part of a “Best of Reddit” article in Forbes! Also mentioned: Oprah Winfrey and President Obama!
