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
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Skin Changes

This week and the latter part of last week have been slightly stressful.  Lucas has developed some skin changes.  Early on in the transplant process, he experienced some mild skin GVHD - but it had pretty much cleared.  But, over the last 7 days or so - he began developing some signs again:  peeling fingertips, red bumps, rough patches of skin, flaking skin on his scalp.  To address this we are doing 2 things.  We are applying cremes (2 types) to his skin 2-3 times a day.  Also, the doctors decided to increase his Tacrolimus dose.  This is a slight set back in a way, since the plan is to begin tapering that off beginning in January.  I suppose that may not happen?  I don’t think we know at this point.  Overall we have seen HUGE improvement in his skin since taking these measures, and that is what is most important right now.  

I think as his cells grow and change, this is a natural part of his body’s adjustment.  Right now, my greatest hope is that nothing gets worse, and that we are able to keep him well without having to use steroids.  Fingers crossed!!!

On a positive note… Lucas turns 4 next week and we have an intimate celebration planned for Saturday.  I will post pictures, he is going to LOVE it!  

The last of the test results are in and they are very favorable.  

Lucas’ chimerism remains stable and mixed with predominantly donor cells.  The results from our last visit are below. 

Date      Day post-tx         Whole blood     Lymphoid            Myeloid

04/13/12              +30                         87                           71                           41

05/14/12              +61                         92                           30                           67

06/21/12              +99                         87                           55                           61

09/27/12              +197                      88                           58                           96

We are so thankful that Lucas’ health continues to improve. 

Not much else is new around here!  While I was away overnight for work, Luis took the boys to the beach.  There was no one there, and it was in the evening (no sun exposure).  They loved it and have been asking to go back.  There are some things about living in Florida that are so nice. 

Things that are coming up that are fun:  Halloween and Lucas will be turning 4 in 14 days!!!

Charlotte and Lon

Remember Lucas’ amazing nurse?  We got to catch up with she and her main man Lon on Thursday after our clinic visits.  They met us at the hotel we were staying in (which was a Priceline “name your own price” steal!).  Lucas must have told her he loved her 5 times.  She is expecting her own little bundle of joy and you can finally tell.  She has a really cute little bump.  It was a short, but very sweet visit with someone we love so much and are so thankful to for helping us take care of Lucas during a time that was so scary.  She is THE BEST!

6 months post-transplant

We recently return to Durham for Lucas’ 6 month post-transplant visit with the doctors.  It was a super LONG day in clinic.  Lucas gave up 50 mL’s of blood, had an ultrasound, a chest x-ray, and a pulmonary function test.  These studies were similar to his 100 day studies.  The results that we have received so far are favorable.  We are waiting on the more important “stuff.”  His chimerism should be back late this week or early next.  We are hopeful that his graft is holding and growing. 

We also saw Dr. Buckley.  Based on a conversation that we had with she and one of her fellows, it seems as though we may be very close to being able to identify Lucas’ specific form of Hyper IGM and where the mutation lies very soon.  Hopefully by the time we return for his 9 month studies in December, an answer will be available.  This will be helpful for our family in understanding if it could affect future children of ours (if we decided to have another…) and if my sister could also be a carrier. 

All and all the visits went well.  We liked being back in Durham for a visit… not to stay!  Thankfully we are home safe.  

Lucas & Liam Park

As everyone is well aware, Lucas and Liam are limited to playing with each other and at home.  They have been doing a great job at keeping busy with one another.  Their opportunities to play outside were pretty limited though, because of the hot weather and sun here in Florida as well as a limited number of activities. 

As the weather has begun to cool down, we thought it would be a great idea to get the boys a swing set.  Even though it is off season, Luis was able to find one at Lowes and with the help of my Uncle Ed and Dave, the three of them put it together in a weekend.  We are so thankful for their help and it was really fun for Lucas and Liam to pretend to “fix” with them.

The boys absolutely LOVE it and they have been playing outside every day.  Lucas has to wear sunscreen, a hat, and bug spray.  This, even though Luis carefully placed the swing set in the shade of the large pines we have in our yard.  Nonetheless, Lucas is out there swinging, climbing, and sliding.

No news = good news

I am happy to say that home is feeling more and more familiar and less “different.”  We have begun to settle into our new routines.  It is so nice to be close by to people who love us, especially our family. 

Lucas is doing well.  His levels are holding on well.  He is going to require IVIG tomorrow, but it has been almost 2 months.  This is the longest he has gone since he was 5 months of age. 

Nemours, Dr. Joyce, and Dana (our head nurse) are all proving to be wonderful.  Lucas still enjoys going to clinic. 

We have our date set to go back to Duke in September.  It will be good to see his chimerism results from that visit. 

Overall, we could not be more thankful for the progress he is continuing to make and we are focused on our continued work to keep him infection free. 

Thanks for checking in!!!

* Photo is of Lucas exactly 3 years ago today, wow how he has grown!

Think this photo is so sweet! Liam insisted on wearing a mask like Lucas has to on a recent walk in the wagon. We have been taking walks in the evening, after the rain, when it is cool. They are truly best friends!

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.  

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