February, 2019
She has been in school for a few weeks now and I fully anticipated her arriving home droopy and exhausted but even her first day back was a pleasant surprise when she arrived home and was full of information about her first day of school.
Last Friday we went for her 4th infusion of medication and we had a chance to meet with the doctor as well. The doctor smiled and told us my daughter’s labs looked so good. She gave permission for her to return to all activities as normal and stated that she wants my daughter to be active. Hallelujah!!!
We are in Lacrosse season again and my daughter has been so eager to return to help manage the Lacrosse team. I’m going to only allow about 3 days per week with the team for now and then transition to every day if her body can handle it.
She has gained weight and is about 128 pounds! Doctor said that this is so amazing considering her swelling has subsided while coming off steroids, so she has been losing fluid and still gaining weight in the process. I’ve also noticed some shorter hairs sticking up indicating her hair is coming back again. Doctor told us that when your body is struggling, your hair stops growing and it sort of lies dormant. My daughter has lost about half her hair because of all the steroids she has taken for seven months, but now it’s coming back. It’s a HUGE relief to be getting some good news, but of course we still feel cautious.
So in the past 2 months since beginning the infusions that we were a bit afraid of I feel like I’m regaining my sanity. With my daughter in school, I’m not having to schedule appointments with her home-bound teacher and worrying about what trouble she might be getting into while home alone. I’ve also experienced the roller coaster of what steroids can do to us emotionally! WOW! I always knew I hated being on steroids but my daughter tolerated them beautifully except for when she came off them. For about three weeks I felt like I was living with a monster! She went from crying over almost nothing to displaying passive aggressive behaviors like stealing and lying. I learned from her doctor that when someone has been on steroids for a very long time, especially children and teens, they can display challenging emotions and behaviors for a good three weeks to a month after their last dose. This was a challenge and I found myself crying to our pastoral staff about how I didn’t even know what to do with this child! Thankfully this subsided and Easter Seals Mentors helped us survive this season because my daughter does well when supervised but gets in trouble when alone.
I’m headed to Phoenix right now, in the air, on my way to the Women’s Speaker’s Collective with my oldest daughter to help her gain confidence in her speaking skills and to better mine too. It feels nice to be able to do something good with one of my other children and not to be surviving in what felt like a constant crisis mode for all of 2018.
I know many families that have much more difficult situations than we do. I wondered if telling our struggles from 2018 might help someone else know they’re not alone and all families have struggles. It’s hard to keep your sanity while walking a road of suffering. However, I’ve also learned that suffering has an important place in my journey of faith. Suffering draws me closer to God and for that I am grateful. I’m also appreciative of the staff and church I serve. They have been a great encouragement to me and I owe them my presence and prayers in their times of suffering as well.
I know at any time my daughter can flare up again. We are cautious and thankful for today and we are pressing on!
This is Journal 6 in a six part series.
Jeni Martin Johnson 
Leave a Reply