Two years ago Nicky started a clinical trial at Stanford with a cream called “Zorblisa” that helped his wounds heal quite a bit. This is not a cure, of course, but getting wounds not only healed but healed WELL is always paramount to ensure optimal health. No wounds = no infections and no cancer, which are the deadly complications of RDEB. For us, preventing wounds to begin with became a quest.
While we cannot claim this as a miracle cream or anything, with continuous use it has healed and kept healed areas that were open for a long time, so we’ve been pretty happy all in all. Specifically his left knee and left arm have been consistently much better than they used to be. The cream does not prevent new blisters, it just helps the healing, which with Nicky’s form of EB (Recessive Dystrophic, Generalized Severe) can get to the point where areas that are constantly traumatized never heal at all. Damaged areas become weaker and weaker each time they are wounded, this is why RDEB is considered a “degenerative condition”.
Here’s a few photos of his wounds that I took a couple of weeks ago during his hydrotherapy at Children Hospital Los Angeles. They may not look all that great to the casual observer, but they looked much worse a decade ago.
Unfortunately, as you can read in this article, the trial has ended, and Nicky will have his last appointment this coming Friday and we will not be getting anymore cream. To say it’s disappointing, it’s an understatement. Finally “something” that works, and they yank it away. Great.
Nicky’s hanging in there, sleeping lots and playing his games. At this coming appointment we’ll inquire about further trials. I will let Nicky decide if he wants to participate in any of them. I know him well enough to know that if it involves biopsies or blood work he will rather wait and see. I don’t blame him at all.
This issue, along with the medications issue is wiping me out mentally. At this point Nicky is on strong opioids to control his pain. Unfortunately it has come to the point where they are now being regulated a bit too much. Not only there are no refills, the Doctor cannot call the pharmacy like he can for all the other medications. I have to physically bring a new script to the pharmacy every month. New laws have been signed to change that to every week. They are making exceptions for cancer patients at the moment, but EB? It’s too rare. We’ll fall through the cracks as we always, always, always do. Normally I would say “fine”, but I am exhausted about it all. So much so I am now researching a way to completely switch to CBD oil as a way to make our lives a bit easier. I think it might even be better for Nicky too, as CBD oil does not damage the internal organs as opioids do. We shall see.
I do think that after twenty-some years I am now suffering from mental fatigue. The constant struggle to think outside of the box is exhausting. I am spending a lot of time with Connor since he finished 8th grade mostly because he makes me feel “normal”. We walk in the morning together, go shopping together, eat together. It’s so different parenting my two children. The difference is that we, as parents of children with disabilities just have MORE…more of everything. More appointments, more issues, more worries. I don’t even mind the bandage changes because it means I spend quality time with my angel. In turn, we also get more love, joy and rewards too, that much is certain, but as my child is getting older, so am I. I’ve given my son all I know to give and it will never be enough for my heart to rest. The mistakes I have made and wrong decisions haunt me. I’m old and tired. . . . so tired.
Maybe it’s just a phase, at least I hope it is. Maybe it’s menopause. Most days I am truly wiped out and I don’t have one ounce of energy left. Some nights I need that pint of Ben & Jerry’s to make me feel better along with that glass of Chablis. I try to exercise, take care of myself, eat well. But summer is coming, and a lot of events to attend to. I am so looking forward to a break from the routine. This is why I try to plan for “fun” things to do, with either Nicky, Connor, both, or by myself. They might be energy zappers which take me several days to recover from, but I feel alive when I am there, wherever “there” is.
So, welcome summer! I am counting on you to make me alive again!
Love & Light,
