April showers are supposed to bring May flowers…yet we are still sequestered inside and away from others. Though we did see a really nice long weekend. However, there doesn’t seem to be a middle ground that is being found throughout all of this.
It’s hard to share what we are going through as it is changing from one day to the next with swings from great to absolutely horrible in the mix, very little neutral ground or stability. These swings apply to almost every aspect of our experiences, emotions, behaviors, activity levels, you name it we have likely experienced it. Little gains are accompanied by some other change that feels like a set back. It’s been a bit rough.
Little gains are accompanied by some other change that feels like a set back. It’s been a bit rough.
Add into the mix kids requiring help, motivation and encouragement to do their school work, me still working and it’s a bit of a cluster. While the kids are settling into their routines, it’s exceptionally challenging trying to have a kindergartner complete online assignments on their own. They don’t yet read to comprehend (much), can’t spell, have exceptionally short attention spans, what constant feedback and your attention. I thought those with non-school aged kids would be finding things difficult, and they are, but Kindergarten and grade 1 is where foundations are built. Letter shapes, letter sounds, counting, etc. Takes a lot more time, effort and energy to get accomplished.
In relation to Dave, somethings have stabilized, but other strange things are now coming up. Dave has been on a steroid taper for 6 weeks. This week, May 25, is the first week of no oral steroid. Unfortunate, we are seeing some symptoms of steroid withdrawal that I wasn’t expecting based on the last taper attempt. Our bodies produce steroid naturally, but it appears that Dave’s isn’t doing that right now. So we need to supplement for a bit, thank goodness this is a small dosage.
Some of the withdrawal symptoms have been extreme fatigue, no appetite (to the point that food really tastes gross and makes him gag. Currently, grapes, apples and cucumbers are okay), and some major mood issues. Last time we had extreme muscle and joint pain, and some more minor mood issues, but the duration that he had been on it wasn’t as long, so I guess I should have been expecting something different.
Mood issues have swung from extreme, intense anger to extreme sadness in a matter of minutes. Getting angry and frustrated over things that aren’t directly important or comments that weren’t intended to be jokes, and in other times would have been taken as such. We are missing the intense happiness this time which makes things a bit more challenging to handle.
On the positive side of the scale, seizures have diminished and have become very infrequent.
On the positive side of the scale, seizures have diminished and have become very infrequent. This shows that things hopefully are stabilizing related to the medication. Limiting contact and sicknesses coming into our house I think has helped with some of the stability.
Still working from home and the kids doing school work from home has also created a different dynamic in our house. Both Dave and I are more introverted people, but even introverts need space from those in their families, which we aren’t really getting these days. I’m pretty fortunate that the kids also live on the introverted scale, but they are starting to really miss interacting with their friends in a more meaningful way.
While I am enjoying not having to commute to work and wake the kids up super early in the morning I am also exceptionally glad that I still have the ability to send them to Sara’s Day Home
While I am enjoying not having to commute to work and wake the kids up super early in the morning I am also exceptionally glad that I still have the ability to send them to Sara’s Day Home. It gives us all a little break, and the kids get a little more socialization that I can’t give them at home currently.
We are getting ready for the relaxation of certain restrictions that allow the kids to see their friends a little more. However, we have had to restrict the youngest ones as they broke the rules for being on the trampoline. (RULE: you can only jump with your family members. Otherwise it’s one at a time). Caught the two youngest ones that hang out the most jumping together. First was a warning, second time we had to lock it down. Good thing the weather got a bit gross or we would have had a more challenging time with this.
Daxen turned 10 in May and got a drive by from the Fire Department. It was really cool and they talked to the kids for a few minutes before leaving. He wasn’t expecting it at all even though I had been dropping hints all over the place for a few weeks. It was nice to have them come by for a fun thing instead of having to get Dave to the hospital. Daxen’s birthday landed on Mothers Day this year so it was a dual celebration that included chicken and waffles and cake.
It’s been a hard month of May. Such a roller coaster of emotions and uncertainty. On a side note the garden is planted.
We will find out the results of the last MRI (May 25) in a week or so and have one more intensive week of chemotherapy before that collection of treatments is complete and we will find out what is next. Fingers crossed that the MRI shows more improvement, or at least no new growths. Stability is a win if that’s all we can get.
The Adams-Schlag Family 