Excerpt from My Diary May 30, 2008
I went out to see Sex In The City and came home all sappy.
I went into the girls rooms and kissed them goodnight. I fed their fish and fixed Carly’s wig on her stand … then I wondered why?
Why have both my girls been cursed with something that makes no sense?
Why do they have to suffer through injections, blood work, people staring. Am I doing the right thing?
I remember the look of Joy on Carly’s face when she first put on her wig – her old personality was back! For a moment that happiness erased any doubt … but it itches and it moves around … it fell off at preschool when she was playing dress up and no one helped her! My 5 year old had to pick up her wig and put it in her backpack, by herself. She tells me the story like it’s ok, like she isn’t bothered by it at all.
For a long time I was just amazed by her attitude. Now, I am still amazed, I’m just not convinced that she isn’t bothered by it.
I’m not sure how you learn to deal with this? In the same breath I feel terrible for feeling so upset. Afterlall, they are healthy when there are so many that are not so lucky.
Tomorrow is another day, another injection.
Excerpt from my Diary: April 2, 2008
Carly will begin Methotrexate Treatments Next week. Last Friday we went to Children’s Hospital Of Philadelphia. The girls have been patients here before but never in Dermatology. Our Dermatologist spoke to a colleague of his who agreed to see us. We met with a few doctors/nurses its all a blur.
When we left, I was terrified. We were given packets of information about three drugs. By the time we left we narrowed it down to two but they are not nice drugs. Both are by injection and there is so much unknown.
Katelyn went to her pediatrician for her yearly well visit and her Doctor confirmed my gut feeling that we should choose Methotrexate. Carly will have baseline tests done on Monday so she can start the treatment.
Carly lost so much hair and is continuing to loose it every day. I feel awful for her and pray that she doesn’t loose her rosy outlook on everything.
Excerpt from my Diary, May 30, 2008
Katelyn and Carly are on weeks 2 and 3 of their Methotrexate Injections and doing really well. Carly is already showing signs of improvement. I’m still worried about Carly’s hairloss and what effects these medications may have on the girls.
I have been giving the injections and hadn’t expected that in my roll as MOM.