LOVE FOR LUCAS

The latest and greatest with the amazing Lucas Francisco Gonzalez a three year old with Hyper IGM Syndrome undergoing a bone marrow transplant that began in January 2012. Email Lucas at: loveforlucasg@gmail.com
Recent Tweets @
Who I Follow

Enjoying this Fall Season!  Last year at this time, Lucas was still wearing a mask.  Look what a year can accomplish!

With the removal of his port and his most recent chimerism studies, added with his not having required IVIG in some time, Dr. Parikh made the recommendation that Lucas would be ready for a Pre-K setting.  This news was incredibly exciting but also anxiety ridden for his Mommy!  Immediately, I began asking internal questions:

-          Where is there going to be a program that still has space and is high quality?

-          What will the sick policies look like?

-          How am I going to facilitate all of this now, with everything we have going on???

YIKES!  Deep breaths and calm words from Daddy, helped me to settle down!  Thankfully, we were able to find a wonderful program, with one special spot for Lucas, it opened because a family was relocating.  The sick policy far exceeds that of MANY other settings.  Can you believe that in some schools the kids have to vomit twice (not just once) before they are sent home?  I was astounded.

Lucas had his first full day today.  He met his teacher yesterday, and today was his transition day to see how he would do.  He did so well, that he was invited to stay for the full 3 hours, and I was sent on my way.  He will be attending 5 days a week for 3 hours.  This is going to be awesome for him.  He SO desires to learn and interact with others.

Looking at him on the playground today with the other children, I felt so incredibly thankful for the progress he has made.  It is absolutely amazing.  Fingers crossed TIGHT that things continue to go well!  Fifth birthday and Disney Cruise coming, so much to look forward to <3.

An important milestone in Lucas’ recovery was the removal of his port.  This happened just a week ago.  Dr. Dokler at Wolfsons Children’s Hospital in Jacksonville, FL performed the procedure.  It went flawlessly and Lucas is healing well.  He was really adorable before his surgery.  He had some “happy juice” and was giggling on his ride to the OR.  He exclaimed, “Oh boy, I have to sit up for this!”  During recovery he consumed a Popsicle, a blue slushy, and an entire bottle of orange PowerAde.  We are incredibly thankful that this went so well and we are excited about the opportunities this creates for Lucas.

We are soooooo excited!!!

We are soooooo excited!!!

1 year, 201 days,

or:  565 days,

or:  80.71 weeks,

or:  13, 560 hours,

or:  813, 600 minutes,

or:  48, 816, 000 seconds

ago Lucas had his central lined placed.  Tomorrow, as a culmination of the 4th and almost half of his fifth year of life, Lucas’ journey as a transplant patient, to a great extent, will be over with the removal of his port. 

This next step will allow Lucas to be able to do a number of things that have been limited for so long!  This is possible because of the limited use of the port, and that is because he has not required IVIG in months.  His immune system continues to establish itself in a positive direction.

His studies from August show his levels as follows:

Whole: 88% (was 87%)

CD3+: 65% (was 66%)

CD15+: 98% (was 97%)

The plan is to:

1. Wean tacrolimus slowly over the next 3-4 months.  We have begun this process, and his skin is responding well thus far.  We are using plenty of topical creams to keep things at bay, a recommendation that his immunologist made to us. 

2. Repeat chimerism studies at the end of tacrolimus wean (~November 2013)

3. Follow IgG levels monthly. Administer IVIG, if IgG < 500mg/dl

Lucas had his first blood draw from his hand, and not his port a few weeks ago and did great. 

He is still taking 3-4 oral meds, 2x a day orally.

We have lots of good things coming up!  In less than 2 months, Lucas will be finally taking the Disney Cruise he wished for during his chemotherapies.  We are sooooo excited about it! 

It recently came to my attention that it has been ages since I have updated Lucas’ blog.  You know what they say, “No news is good news” and this is true. 

Lucas still has very mild GVHD

on his skin.  That is the only place it is present and we are treating it with 4 types of cream, in different places 2 times a day.  He is not fond of this, but bears it and it has really improved the appearance and feeling of his skin over the last 3 months! 

Lucas’s donor chimerism remains mixed, but stable. His one year studies were essentially unchanged from his 9 month studies.  This is not concerning, but in light of this and his mild skin GvHD, Dr. Parikh does wanted to keep Lucas on Tacrolimus for another 3 months at least, so we have.  We just sent off blood to check his chimerism again this month.     

His current chimerism:

Whole blood: 87% (90%)

CD3+: 66% (62%)

CD15+: 97% (98%)

We hope these new results, when they come will be equally as good, or better.

Lucas’ cell function tests indicate that his body is producing cells that it never had before and they seem to be working.  He is still receiving IVIG, but it is getting farther and farther apart in terms of his needing it.

Because of the post-transplant medications still being part of his daily life, he is not going to be able to attend Pre-K in the Fall.  We have accepted this and we have been working on Pre-K curricula at home. 

We are doing a touch more than we were in the last 3 months.  We are still very cautious and aware of what is a risk for Lucas, but has he has matured he really understands that he needs to wash his hands so this helps.

Enjoy the pics!

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."