Good news arrived in early April related to Dave’s treatment and recovery. Even though the bad news was that we were all staying home, away from people and not allowing anyone into our house. Which I have to say, wasn’t really a big stretch, other than the children roaming around and usually appearing in my basement on the weekends. The extra children that is.
Through the first week of April we struggled a bit to find our feet with the kids doing distance learning, me working for home and Dave starting to taper of the steroid (YAY – happy dance). Kindergarten learning at a distance with only 1 hour of teacher time per week is a bit hard as it feels as if all of the learning has been tossed at the parents. So, it’s been a bit of a struggle to find the balance with Seth to ensure that he is learning what he needs to learn to be successful in grade 1.
Seth’s learning has fallen to Dave to navigate, which fails a bit more than I would like, but we are getting there. There are certain things that are important that are learned in Kindergarten, writing is one of those things. While a lot of our world has gone digital, I can’t see a point in time where physical printing/writing won’t be necessary. This is a muscle memory skill – prove me wrong please – but I just can’t see someone learning only typing being able to put words properly on paper.
Dave, on the taper off steroids, gets frustrated much quicker than he would normally with teaching, but then again, teaching a 6 year old the basics is a practice in patience with many parents already have very little to spare. As much of Seth’s learning is also online a new system has to be navigated, which again creates challenges. Too many new things create a very bad mix in someone who is already frustrated because they can’t do things like they used to do them.
I realize through this that I am a very accepting person. That I don’t judge someone, much, against what they used to be able to do. What I find I do judge is how they act and behave between before trauma and after trauma. Changes in reactions or how we behave when certain things happen, specifically kids not following directions, is much more of a challenge. Particularly, around the need of others to have people respond a particular way. Let me explain that better. And this is my perception, which might be different from what Dave feels, but this is about him.
And this is my perception, which might be different from what Dave feels, but this is my read in the situation.
When Dave hits a particular dose on the steroid, I find that he becomes exceptionally anal-retentive and wants things to be a particular way and for people to behave in a particular way. When we don’t do things in the way he wants he gets angry and frustrated. This is particularly the case with the children, especially around listening. This isn’t necessarily new, both of us have issues when the kids don’t listen and do what they are asked, but it becomes worse with Dave on taper as he picks at things he normally wouldn’t. Like helmets left on the side of the stairs.
Most of this comes out when he is on 4mg of the steroid and doesn’t really disappear until we hit 1mg. Though this time I have been able to bring these things out a bit more, though it provokes the anger response more readily also. Balance in this is hard, but we are working through it and will come out the other side strong like usual.
I haven’t really explained why we are tapering off the steroid. GOOD NEWS HERE – Dave’s last MRI showed no swelling so docs felt that he could start coming off the steroid which was only being used to reduce the swelling. This started after the last chemotherapy run which was at the beginning of April.
NO HOSPITAL VISITS DURING CHEMO RUN!!!
The last round of chemotherapy didn’t come with a trip to hospital, which was fantastic. Though Dave still experiences some focal seizures, not every day, but they are still happening. Some of what we were worried about related to the intense seizures on day 4 of chemo didn’t manifest this time, or maybe we just handled them a bit differently. We are learning as we go.
We also have been staying healthy, a positive of social/physical distancing and the kids not being exposed to others who have illnesses and bringing them home, and I guess me too. This has been a nice change for us as we had been catching colds every month since October. Now if my allergies would just leave off we would be fantastic; I have a love/hate relationship with spring.
Also this month, Dave and his brother had ordered a 3D printer earlier this year, which was delivered in the last couple of weeks. It is a kit they had to put together. So, they spent a few days doing that, which got Dave out of the house a bit. He needed it. Now they are printing all sorts of little things and upgrades for the printer to do the big jobs for costumes and other tools. I really hope we can have Halloween this year!
Over all, April so far has been decent, even with social/physical distancing. Things have been slowly improving and appear to be continuing on that path.
Oh and we have a plan for Daxen to still have his 10th birthday party. It’s a unique way for him to share some time with friends without much cost (wait – no cost). He is building his own play area in Fortnite and will be inviting his friends to come and play with him at a particular time. I think we might get him to build something in Minecraft too for those who don’t have Fortnite and Seth can host. Discussions to be had.
Dave’s next chemotherapy run starts in a little over a week, with his next MRI near the end of May. Even with COVID-19 we are doing well and managing to stay positive and strong. OH, I have been back digging in the dirt! It is wonderful.
Oh, I forgot to mention the hair. Dave is hairy, oh so hairy. You likely wouldn’t recognize him if I posted a picture, which I can’t get a good on of him right now, but will try for the next update.
I can’t thank all of you enough for the support, prayers and positive intentions you are sending our direction. We are so very grateful. Thank you.
The Adams-Schlag Family 