Blog · May 5, 2014

Here’s The Latest…

Nicky’s having a rough time right now. Just when he was able to clear his throat by chocking up a piece of skin-not a pleasant thing, since now he has a wound in his throat that needs to heal-he is now dealing with a big piece of skin torn from going #2. It’s always something.

I promise to do a blog at Caringbridge aIMG_2865 copybout our trip to Stanford sometime this week-I can never find the time. This is the only morning I have this whole week to do ‘stuff’ and all I did is take care of this blog while I helped Nicky doing various things. Which is why my poor book is written in 15 minutes here and 15 minutes there increments. It’s mind boggling. At this point, I will be happy if I am done by the end of summer/early fall, but I am not making any promises!

On this post today I wanted to show those that care about Nicky a couple of pictures. The first one here on the left is Nicky’s left arm. This is but one of a series of pictures I took for Dr. Lane the weekend before we left for Stanford so he could take a peek at his wounds without going through a bandage change in front of him.

Amazingly enough, this is his ‘good’ arm. I say that because it’s bad, horrible one moment, then it heals. It never heals completely, but the wounds never really look ‘bad’. We are always able to close up at least a part of the wound here and there. The other arm, on the other hand (not shown here) is just horrible. It’s still better than it was a few years ago, but… still.

Not sure I mentioned lately how much I hate EB. There you have it. I hate EB.

The photo below, on the other hand, show the nice stitches that Dr. Lane did from the biopsy. I think he did a really good job! I was surprised he didn’t cause any blisters, however, I must say, this is, for whatever reason, a good spot for Nicky’s skin. That’s why we picked it for him to work on. We knew it was a good area and that we could wrap it to allow proper healing. Nicky told me this morning it hurts… I need a ton more pain meds darn it.

These biopsies are the one and only time Nicky will ever had to do them and are crucial to grow corrected, genetically modified skin grafts if he qualifies for the trial (once he’s 18 in late November). Even if he does not qualify to be in the first 5 patients, he might for later trials.The FDA has strict rules for the first 5 patients being part of the trial, the rules lax a bit after that, including age restrictions. I wish we didn’t have to wait 18 years for ANYTHING to finally happen for EB, but I am forever grateful Nicky is hanging in there and is still with us and may live to see a cure. So many haven’t. Despite everything, we count our blessings every single day.

The great thing is that Stanford is working with USC, so when they will start in the future clinical trials with the infusions, Nicky not only will be old enough for the trials, but they will already have Nicky’s biopsies and DNA to work on. Please keep your fingers crossed for him! Just imagine doing a genetically modified skin graft on his arms, which not only would close the wounds, they would be EB free. I can’t even imagine it.

IMG_3032fWe must think positive… MUST!!!!

OK, a few more things:

1. Keep your eyes peeled on Kathie Lee & Hoda on the Today Show on FRIDAY! My friend Kadee & Jamie will appear on their ‘amazing moms’ segment, representing all EB moms.
2. Wednesday morning Nicky will be the honorary pastry chef of the day, FOX11 and Gina Silva will be there, I will let everyone know when it will air.
3. Juan Lewis, also known as the ‘Fired Up Chief’ is doing a fundraiser for Nicky! We are trying to get Nicky a power chair that I can actually LIFT into the trunk, unlike the big heavy one that I cannot use unless there is someone helping me. Here’s his fundraising page… THANK YOU FOR YOUR SUPPORT!!!