LCH is a rare disease where a type of white blood cell that normally helps the body fight infection, called Langerhans cells or denditric cells, multiplies and infiltrates various parts of the body causing tumors and damage to organs. In mild cases, only the skin is affected. Our daughter’s is a high-risk case in that in addition to her skin being affected, her liver and bone marrow have also been infiltrated, and caused liver failure and blood clotting issues.
Jenna spent a month in the Immune Compromised Unit of the hospital while they started her year-long chemotherapy and steroid treatment, and stabilized her liver and blood levels. Because she tested positive for the rhino virus, she was confined to her room except for procedures and tests that had to be done elsewhere. I barely left Jenna during the month, hardly even put her down, and only spent an hour at home during the entire hospital visit. Seeing her so sick, in such pain, not understanding completely what was happening and feeling so powerless was like a nightmare sometimes. I often wanted to disconnect her from all the machines, run away and never come back. But I knew if I did, she would die. And so I found ways to cope, like not thinking any further into the future than the end of the day or night. I listened to recorded books to drown out my inner dialog and the machine noises. I watched a lot of “Friends” reruns. When I slept long enough to dream, I often dreamed about sewing. I breathed in and out. And we got through it.
Finally Jenna was discharged, only to return 24 hours later because she had a fever. Because the chemotherapy suppresses her immune system, any fever 100.4 or higher that lasts for over an hour warrants a trip to ER. Luckily we were able to come home within a couple of days and have only had one other overnight stay for observation after a biopsy of her liver since then. The rest of her treatment has been outpatient so far.
And so we’ve been trying to establish a new “normal”. My husband returned to work. I have started working again, a little. I’m cooking dinners again, sometimes, and picking our son up from school. All the things that were normal are basically back in place, plus more. I am nurse now in addition to Mom. Jenna has a feeding tube, a PICC line in her arm and almost a dozen medications she needs twice a day. And I work very hard to keep our house disinfected – anything I can do to keep Jenna healthy and out of the hospital. I hit the ground running in the morning and hardly stop all day and night. (It took nearly 3 weeks just to finish this post.)
So if you’ve wondered where I’ve been and why I haven’t posted much for a while, now you know why. I’m trying to get back in the groove but it’s taking longer than I thought it would. And always in the back of my mind I’m worried she’ll get an infection and fever or that her treatment isn’t working and they’ll have to admit her to the hospital to do heavy-duty chemo. But as of now, all is well. Jenna is happy and active and her treatment is working slowly but steadily. And we are doing the best we can.