Blog · November 14, 2013

The Good & The Bad

I wanted to take a moment to thank everyone that left very sweet comments on my Caringbridge post (dated November 2013). The guestbook does not give me an option to reply, so, to all that did leave me sweet messages, thank you. In time of need I know I have friends that really care and that means a lot to me, so, THANK YOU!

IMG_0835 copy_skOK, since yesterday afternoon there are GOOD news and BAD news. I will start with the bad. 🙁

This is a photo I took of Nicky last night. He was *very* upset. We ran out of his ‘itchy medicine’ a few days ago and the Doctor is taking their sweet time to fax the refill to the pharmacy, so now he’s scratching himself to death. What you see here is his left leg’s enormous blister in the middle of the leg hanging that pretty much went around the whole leg. What you don’t see here is the blood blister as big as a fist on the bottom of the foot and another hanging blood blister on the side of the knee. We try so hard to get the wounds to heal fast and good and we even got our little concoction going which has mixed in diaper rash cream (with 40% oxide) to reduce inflammation, a numbing gel, some Alwyin cream (we only have a few jars left, they have discontinued it, sigh, we’ll have to figure out what else to use that is cream based) and lately what works really good for us is a little cannabis oil mixed in. This concoction has gotten wounds healed that would not heal before, so I know we’re doing something right.

Please keep Nicky in your thoughts. I just dropped him off at school and his foot was extremely painful to the touch, let alone put any weight on. THANK YOU!!! <3

Nicky with Eddie Vedder of Pearl Jam at the EBMRF ‘Rock for EB’ Fundraiser in September 2013

OK, on to the GOOD news. At the EBMRF fundraiser in Malibu in late September, Dr. Lane told us that they were going to start the skin graft trials the following month. For more info on this, please read this blog I wrote for the EB Info World Website, and scroll down to ‘Cell Therapy for EB’.

In short, they take a skin sample from the patient, correct it ‘in vitro’ using viruses and sorts to fix it genetically, grow a larger sheet of corrected skin and graft it back onto the patient. They wait for it to heal a few weeks and when it takes, that area of the body is permanently fixed-no longer EB in that area. Wheee!

So, the good news, is that they indeed started the trials! Hallelujah! We’ve been waiting for this for a decade. They are still waiting to see if the graft took, but if all goes well, as we all hope for, early next year they will re-start their characteristics study to find out which patients can be a candidate for the gene transfer, and Nicky is on the list of possibly becoming a candidate for the trials. I feel confident and safe in these trials, unlike I was when we went to Minnesota in October 2010 to meet with Dr. Wagner. We felt a Bone Marrow Transplant for Nicky was too risky for him, and the risk vastly outweighed the possible benefits, and the risk of death was too high. That is why we decided against it. These skin trials, on the other hand, are far safer in my view and offer a real cure even if only in a little area of the body. I can’t imagine how Nicky’s life could be improved if they grafted only his feet!

With this bit of good news, I feel I can now dream again and have real hope again. Nicky is over the moon. I will forever be grateful to Lynn Anderson, who started the EBMRF and the research at Stanford, and we love Andrea, whose taking over the foundation brought much more awareness, donations and who can forget the Star power?

Hope is an amazing thing, so, THANK YOU!

Love and Light,