Gabrielle, Naomi, and I will be taking part in the South Florida production of Savior of the World: His Resurrection this April 6th and 7th.  It's a wonderful show filled with beautiful music and terrific scenes recounting the resurrection of Christ. 

If you're in the South Florida area the weekend of Easter, we'd love for you to see the show.  Contact me for free tickets to the show.

Show times are:

Friday April 6th & Saturday April 7th at 7:30pm
(For Ages 8 and Older)

Saturday April 7th at 2pm
(For Children Under 8)

If you're lucky, you'll get to sit with Simon during one of the performances ;)

First of all, we'd like to thank Author Mike Thaler for writing the Black Lagoon series of children's books.  Simon's reading skills have taken a quantum leap forward since discovering those books at the local school library.  He reads the books voraciously!  Thank you, Mike Thaler, so much for helping our son discover the joy of reading.

Speaking of books, Naomi recently read about Flat Stanley, a boy who becomes flat after a bulletin board falls on him.  Amazing things happen to Flat Stanley, like being mailed to California to avoid the cost of plane fare.  She and her classmates each made a Flat Stanley and an accompanying journal to chronicle his travels.

Anyway, in the spirit of Flat Stanley, Simon's teacher decided to create a Flat Simon.  A very lucky few will be receiving Flat Simon in the mail in the coming weeks.  All we ask is that you take Flat Simon somewhere nice, maybe to a movie, or out to the play ground, or any other cool and interesting place, and take a picture of Flat Simon at that location.  Then, mail Flat Simon back to us with a letter and the picture you took.   

As always, please keep Simon in your prayers.  We are still looking for a 9/10 bone marrow donor match.  We hope to have more news for you in the coming weeks.

And now, more photos:

This past week we had a photography class for Cub Scouts. Here are some photos Naomi took with my smartphone of the photo-taking fun (click the photo or here for the entire album):

February 20, 2012

Friday, Simon and his friend Paulo went to the Carnival. Here are some blurry action photos because the kids couldn't stay still (click the photo or here for the entire album):

February 20, 2012

So, we are still looking for a bone marrow match for Simon.  We are working on holding a drive at Notre Dame d'Haiti Church in Miami.  We are also working on having a drive at a Brazilian church in Pompano.  Special thanks to the Haitian-American Chamber of Commerce of Florida and the Icla da Silva Foundation for their help.

Please keep Simon in your prayers, as I'm sure they are sustaining him while we wait for a bone marrow donor match.

And now, a couple of slideshows.  Simon having fun at Cub Scouts, and Naomi making the donuts:

 

 

I just thought I'd share some awesome photos from this last month of 2011.  Enjoy!

December 30, 2011

 

December 30, 2011

 

Oh, and if anyone is interested in my misadventures in Karaoke, check it out.  Simon and Naomi got on stage for Feliz Navidad!  Naomi and our friend Aysha helped out with Happy Christmas!

 

 

 

 

Hey, just wanted to give everyone an update on Simon's condition:

- We will know the results of the Liver biopsy next week.  We do know that the pressures are elevated.

If the pressures go higher, there are blood pressure medications to ease the pressure.  The doctors can also put in a shunt to relieve the pressure.

So, the situation is not great, but it's not that bad.  Could be worse.

- Simon now has a condition called Hemalysis.  Basically, the red blood cells get chewed up.  What causes this?
-- A bad IVIG batch; IVIG is made from blood.  If a donor has an antigen to Hemalysis, it can cause a problem in Simon.  At least that's the way I understood it
-- A medication called Ceftin can cause Hemalysis in some cases; Simon has been on Ceftin for awhile

There are other ways to get Hemalysis, but I won't review that at this time.  Basically, the doctors believe the Hemalysis is being caused by medication.  He will be tested right before his next IVIG treatment to see if the Hemalysis counts have gone down; if so, then that would be a strong indication that the Hemalysis is caused by the IVIG.  The treatment?  More IVIG and an increased dose of Prednisone.

If it was the Ceftin, we should see the counts go down, since he has stopped taking that medication.

- We still don't know officially what the genetic defect Simon has, but our doctor at NIH hinted that his genes are much more affected than they previously thought.  This does not affect how he is being treated, nor the need for a life-saving bone marrow transplant.

It would be nice to know for sure what he has, in order to help future people who come along with the same defect.

- We really need to find a Bone Marrow Donor for Simon.  The search is really difficult because the donor needs to have Brazilian and Haitian background in their DNA to match with Simon. 

We plan on contacting churches and other community organizations in New York and South Florida to hold Bone Marrow Drives.  We hope to find a mixed race individual who will match Simon, so we can cure him of his immune deficiency and save his life.

The longer this takes, the harder it gets for Simon to have a Bone Marrow Transplant completed.  He is a good candidate for a transplant now, but it is not easy keeping his immune system stable.  Just this week at NIH, we changed dosege on three medications, and added two more medications.  He is on close to 20 medications, overall.

If you would like to register with Be The Match online, click here.

If you would like to register in person, click here to search for a drive in your area.

***

I just want to say thanks to Dr. Uzel, Dr. Koh, and all the other wonderful doctors, nurses, dieticians, social workers, staff and volunteers Children's Inn and 1 NW for making our weeklong stay as pleasant an experience as possible.

And now, some photos from out trip to NIH.  Enjoy:

 

December 10, 2011

 

December 7, 2011

 

December 7, 2011

If you've already registered with Be The Match and would still like to help Simon, click here.

Just wanted to give everyone a quick update on what's going on with Simon.  He's having a Bronchoscopy November 30th at Joe DiMaggio's.  The week of December 3rd, we'll be at NIH to do a Liver Biopsy.  All this is being done to make sure Simon is healthy and ready for a Bone Marrow Transplant, should a donor become available.

Speaking of donors, please register with BeTheMatch to see if you are 9/10 match for Simon.  We appreciate it! 

If you've already registered, encourage everyone you know to register.  The registration process is super-easy, and donating can save a life.

***

We recently took a trip to Islands of Adventure in Orlando, so Simon and Naomi could see Hogwarts.  Here are photos of our trip:

***

Since it's the holidays, I thought this year we'd try to give everyone a heads up on what Simon and Naomi are wishing for this Christmas!  We plan on buying them new bikes, since they've outgrown their old ones.  In addition, they each made a list of things that I've put on Amazon.  So, if you plan on shopping for them this year, these lists should help you figure out what to get:

Simon's Wish List

Naomi's Wish List

If you'd like to help us out in a different way, you can always donate to Children's Organ Transplant Association.  They have been a huge help to us this year, and we would be grateful if you could support their efforts!

UPDATE: We are asking that asking for people of Haitian descent to register with Be the Match.  You can register online, or join in person (just put in your zip code to search).

Hi all,

We learned this week that the Bone Marrow Registry is only showing 8/10 matches for Simon.  Our doctors want a 9/10 donor match in order to do the bone marrow transplant.  A 9/10 donor match would increase the odds of the transplant being successful.

As you know, Simon is fighting an incurable combined immune deficiency.  He takes a battery of medications to keep him healthy, but he cannot stay on these medications forever; his internal organs cannot handle it.  He needs a bone marrow transplant to fix his immune system. 

If you have not registered with Be the Match, please do so.  You could save a life.  Please go to http://www.marrow.org/Home.aspx and start the registration process today.  They will mail you a packet.  You swab the inside of your cheeks, mail it back, and you're done.  Gabrielle and I have both registered; it's super easy!

If you have already registered at Be the Match, thank you!  Now, I need you to spread the word with your friends and co-workers.  Gently twist their arms until they register ;)

One last thing: if you are in Brasil, I would ask that you register at one of the following bone marrow registry organizations:

http://www1.inca.gov.br/conteudo_view.asp?ID=125

http://www.atmo.org.br/

If you know someone who is in Brasil, please pass the word about registering to them!  Simon is more likely to find a match from people who share his ancestry.  So, please spread the word internationally!

--
Anthony DeCarvalho

On June 14th, we came home from Duke discouraged by the failure of the trial drug CMX to rid Simon's body of the CMV and EBV viremia and possibly being the cause of Simon's liver failure. Simon was seen again by his former Immunologist, Dr. Kleiner. His goal now was to see if he could reverse Simon's condition.

There is a common liver issue with patients like Simon. It is called Autoimmune Hepatitis. This is what the doctor's back home and at Duke thought was happening to Simon's liver. The body starts to attack it's own organs as if it were a foreign tissue or bacteria. It causes scaring of the liver and subsequently begins to destroy the liver function, as we began to see with Simon.

One of the symptoms of liver failure is Ascites, which is an accummulation of fluid in the abdomen, swollen face, arms and legs. This is dangerous. With too much fluid in your system, you can accumulate this fluid in your lungs if not handled well. It can also cause blood pressure issues. These are only some of the many symptoms we were trying to battle against to save Simon's liver.

While at Duke, Simon went on some heavy medications to relieve the Ascites, as well as the other symptoms. However, with the good comes the bad. The drugs have side effects that can potentially harm the liver and kidneys. So damned if you do, damned if you don't. Our doctors tried some new medication to suppress his immune system in order to get the liver failure to regress. He was hoping to be able to limit the use of the Lasix (Furosemide) to prevent kidney stones.

After a month of treatment, Simon was reassessed. I'm glad to say the new medication seems to be helping his liver!

Now our next step is to see if we can continue to proceed with a bone marrow transplant. We finally were able to meet with Dr. O'Reilly, a world-renowned doctor at Sloan-Kettering Memorial in New York City. He will be taking a different approach to eliminating the auto immune deficiency and the CMV/EBV viremia. Essentially, we will be starting the process all over again. Simon will be back on the Bone Marrow Registry, looking for a donor to match him. Dr. O'Reilly and his team will also be doing some high level science and cell engineering to eliminate his viremias. 

Dr. Uzel at NIH in Bethesda Maryland also continues to follow Simon's case. She regularly has us visit to see how well Simon is doing. We were blessed to have the opportunity to visit NIH as well on this trip.

And now for some more light-hearted anecdotes from Simon and Gabrielle's trip to DC and New York:

Simon and Gabrielle took the Amtrak train from Union Station in DC to Penn Station in New York.  Upon arrival in the city that never sleeps, Simon caught his first taxi cab ever, successfully flagging down a driver for mommy!

A warning for anyone travelling to New York: make sure the cab driver drops you off directly in front of your destination. 

The Ronald McDonald House in Manhattan was very impressive.  It's a great example of how New York is one of the most charitable cities on Earth.

It was great to see Elza and Alzira in Washington, D.C.  Simon and Naomi got some cool gifts from their aunts.  We wish Elza well on her upcoming move!

After a trip back to NIH for another day of tests, Gabrielle and Simon flew back to Florida.  Three days, two hospitals in two cities, one whirlwind journey!  After all that, it was time for ... FIVE GUYS!

Call to action time:

1. If you have not signed up for the National Marrow Donor Program, please consider doing so!  The process is very easy and can help save a life!

2. Soon, Simon will be moving up to New York to for his treatments at Sloan-Kettering.  We expect our expenses for our trip to New York to be similar to the costs we incurred during our stay at Duke University Hospital.  I hate to ask again, given how bad the economy is, but if there is any way possible you can help us out, please consider doing so.  Here's how you can help.

 

Last, but not least:

1. Special thanks to Caleb Speirs for sending Simon those cool Marvel Comics 3D puzzles.  He was super-excited about that, and he highly recommends Caleb sees the Thor movie when it comes out on DVD/Blu-Ray!

UPDATE (CLARIFICATION): Simon did NOT have the bone marrow transplant done yet.  We are hoping the folks at Sloan Kettering or Texas Children's can help us achieve that goal.

***

Well, we're back home in Florida.  It was a long trip back, and definitely worth it.

From Samsung Captivate Public

Before we left Durham, we had fun at Adventure Landing. We played laser tag and rode the go-karts!

From Samsung Captivate Public

Simon had a blast at Chuckie Cheese for his birthday.

From Samsung Captivate Public

Naomi enjoyed E.K. Powe Elementary School, which is right next to the Ninth Street district. Lots of cool, "Artsy" activities in that area!

***

From Samsung Captivate Public

From Samsung Captivate Public

Anyway, Just wanted to again thank Dr. Prasad, Lauren, Maggie, and all the other fine people at the Duke Children's Health Center who took care of Simon during the past five months. I'd also like to thank Simon's teacher Ms. Trish for all her patient instruction and effort.

I'd also like to thank all our new friends we made while at Durham, including Leah Rubow and Jeff Tessem, as well as Bishop Close and Bishop Veach, for helping us feel at home while away from home.  The 2nd Ward in Durham will always have a special place in our hearts; we hope to see all of you soon. Hopefully it will be under better circumstances.

***

As for what's next: we're trying to schedule a consult with the folks at Sloan-Kettering in New York concerning CTLs and stem cell transplants.  We're also meeting with local doctors to help determine if Simon will need a new liver or not. 

For now, I'm happy we're all together again.

I appreciate everyone's support and prayers; this has a made real difference in our lives.  Please tell people you know about Simon's story.  We're going to need all your help to get Simon through this.  As happy and joyful and normal as he looks on the outside, that's how ill he is on the inside.  I know it's hard to believe when you see his shining face that he has an unnamed combined immune deficiency that is threatening his life.  There are researchers sequencing Simon's genes, trying to pinpoint the problem.  There are wonderful, brilliant doctors who are working hard to find a cure for Simon.  And we, as parents, are providing round-the-clock nursing care for Simon. 

I know when you see us, we appear "normal."  We keep our emotions and struggles to ourselves when in public.  Simon tries to fit in and have fun.  Trust us, things are the opposite of "normal" for us.  So, please remember Simon in your thoughts and prayers, and spread the word about our cause: to save Simon's life.

I wish Simon was well, and we could all live "normal" lives.  Do what you can to make that a reality.  Every little bit helps.