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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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!  

Lucas Readers Digest

As part of Reader’s Digest, “The Year in Miracles” article, Lucas was featured.  Lucas is a miracle in SO many ways!!!  Here is the link to the entire article, which is sure to get you ready for the holiday season an uplifting way!

http://www.rd.com/miracles

Halloween

Lucas and Liam both decided what they would be this year for Halloween.  Liam loves the Hulk and Lucas (although torn about whether or not to be Iron Man instead) chose Captain America.  We tried to be really practical about these costumes since we were not celebrating Halloween in the traditional sense.  Their costumes are actually pajamas and they have been enjoying wearing them over and over!!!  They also both needed new sneakers and we found these online on sale…  I felt really proud that we gave them the costumes they wanted, but in a very practical way.  We bought each of them some candy (that met all of Lucas’ dietary restrictions) and gave them to 2 of our neighbors and 2 friends.  We walked to 2 houses and drove to 2 others.  Lucas wore his mask under his “Captain” mask.  The boys had a great time and it did not feel any different to them than a normal Halloween. J

Lucas Birthday

Lucas recently celebrated his fourth birthday.  Because of his limitations with crowds, we had a very small party at our home.  Not to worry though, he had PLENTY of fun!  He got a bit spoiled this year from his Aunts and Uncles.  I am almost embarrassed to mention that he got a train table, a bike, and a basketball hoop for his birthday.  Yikes!  Given everything he has been through this year, I think that spoiling him on his birthday can’t be too bad of a thing! 

He asked for a train themed party.  My Uncle got a beautiful vintage train candle holder for him that held 4 candles, so this became the centerpiece of the party.  An organization called Icing Smiles (http://www.facebook.com/#!/icingsmiles?fref=ts) provided Lucas with a beautiful “fun cake” for his birthday.  I am OBSESSED with cakes; I LOVE them… so this was probably even more exciting to me.  There is a beautiful and interesting story here actually.  The baker who originally agreed to make Lucas’ cake became ill just a day before she was set to bake his cake.  She was SOOOO sweet, and called to tell me her predicament.  We agreed that it would be in Lucas’ best interest for her not to bake his cake and just get well herself.  When Icing Smiles, the organization found out, they tried quickly to find another baker.  I told them multiple times that it was not necessary, but they were so wonderful and really wanted to provide Lucas with a cake. 

Shea Rosario of JLS Custom Cakes committed to making Lucas’ cake.  She designed, baked, and delivered the cake in less than 24 hours!  It was the MOST beautiful cake I have ever seen.  The attention to detail was AMAZING!  If you are in Jacksonville, FL and ever need a cake, you should look her up.  (http://www.facebook.com/#!/JlsCustomCakes?fref=ts). 

Thank you Shea!!!  

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.