I started taking Nicky to CHLA (Children Hospital Los Angeles) in the summer of 2004 when he was 8, following my attending the EB Patient Conference in Palo Alto, where I met a rather eloquent and “well versed in EB” hematologist who opened my eyes on something Nicky was dealing with and I knew nothing about. He was severely anemic. I always gave Nicky iron orally or in his tube, but he was increasingly becoming pale and lethargic. After I met this Doctor a light bulb went off in my head. I made sure his pediatrician did blood tests to check his iron levels and she immediately referred me to him. To him! An expert in EB! I could not believe it. This doctor practiced at CHLA, he was actually a local doctor for us, amazing. Having a child with a ‘orphan disorder’ makes you deeply, and I do mean DEEPLY appreciate any doctor that is not only familiar, but considers himself somewhat of an expert. I was beyond thrilled. He immediately started giving Nicky blood transfusions to replenish something in his blood that was not absorbing iron, and then proceeded with the iron infusions. It made a world of difference. He’s been going to CHLA ever since and this doctor is even taking over his overall care and started a small EB clinic of sort so he can organize all sort of other things Nicky may need, such as hydrotherapy, PT, dentist, bone density scans and more.
I could write at length about this, but I think, as a mother, what has made the most impact in my life going to CHLA anywhere between 2-4 times a month (or even more on occasion) is the people I meet, more specifically other parents. Of course we love the nurses and they know us well (ha ha), but other parents sometimes make me feel less alone and give me a sense of humility. We are far from being the only people dealing with a child that isn’t healthy, although at times in our normal life it may seem like it. The rarity of EB at times does make us feel as if our trials are unique. We do get to meet other EB parents on occasion at CHLA, but that is more the exception than the rule, however, for whatever reason, what has made the most impact on my psyche is parents dealing with other issues.
A few weeks ago I kept bumping into this woman-she caught my eye while I was in the McDonald’s, she then was in line in front of me at the pharmacy, we very briefly talked, she wanted to know what Nicky had and if he was OK. Then later on we were stuck in the elevator together. Considering how many hundreds of people roam this hospital on a busy Friday afternoon, I felt as if I was ‘supposed’ to meet her, there was no way around it, too many coincidences. In the elevator she was distraught. Apparently her son, an active teenager in some athletic team in school, was dealing with cancer. The chemo was making him very ill and the medicine to ease the bad effects was not ready and would not be ready until the next day. She did not know how she was going to go home and deal with another night of vomiting and pain. She was holding back the tears and she made me cry. I left the elevator in a somber mood and I just could not get this woman out of my head. I could have talked to her for days, I felt as if I had known her all my life, she was a kindred spirit of sort. I still think about her and wished I had a way to contact her or even knew her name.
Another parent, this time a dad, was sitting across from us yesterday while Nicky was getting his iron. Nicky had taken off his shirt (shirts bother him) so he made a cute comment to him and Nicky laughed. His pre-teen son was lying there getting his chemo. This past January they had to remove a tumor the size of a lemon from his brain. One of his arms had gotten considerably weaker, and they had to have him re-learn how to use it and it was hard to walk as well, they were in the process of rehabilitation, re-learning, making new brain connections, similarly to what my husband is dealing with post-stroke. He was on chemo trying to make sure they killed the cancer in its entirety, knowing that he would have to get checked every 3 months for the rest of his life. The dad didn’t seem sad or upset, he was personable and amazing, dealing with what cards life had dealt him, making the best of everything. I could have sat there and talk to him for hours.
It’s meeting other people that are dealing with cards that should have never been dealt, hurting the children we love so much that gives me a sense of responsibility, a strength, a reason to move on and keep chugging along, keep up the fight, keep up the care.
To all the kindred spirits out there that have touched my life, I bow to thee.