Dave returned home from the hospital in a “medically stable” state on December 12 in the afternoon. “Medically stable” meant that there had the seizures were generally under control and there was no good medical reason for him to remain in hospital. We were a bit skeptical as there were still focal seizures happening throughout the day. The first night was a trial to see if we could all handle Dave being home and that there were no major issues with that occurring.
Still skeptical about the statement medically stable indicated in Dave’s discharge.
Medically stable also indicated that there was to be no further surgery required or any other medical intervention beyond the change in medications used to control the seizures. The cocktail that he was sent home with included the highest dose of steroid that doctors are allowed to prescribe without someone remaining in hospital, three additional anti-seizure medications (keppra stayed regardless), a pill to defend against ulcers, and an antibiotic as the level of the steroid mixed with all of the other medications could result in a rare pneumonia.
Still skeptical about the statement medically stable, but there really wasn’t anything they were doing for him in hospital that couldn’t be done at home where he could get better sleep and eat better. By that time they had moved him from the critical care side of the ward to double occupancy room. Smaller, but more private related to moving around.
The first night home we were both a bit nervous as he was still having focal seizures at about 2-4 hour intervals. They typically lasted under 2 minutes, which was what was happening in the hospital too. This didn’t change for the first couple of days and I was very glad the weekend was close. Gord and MaryAnne stayed in town until later in the afternoon on Friday to make sure Dave had someone around should he need to go back to the hospital.
The weekend saw some improvement in the frequency of the seizures, but sleep patterns were quite a mess. Dave’s sleeping habits reminded me completely of what it’s like with a toddler; 2 hours of sleep, play time, then crash for another 2-4 hours. He was also needing to eat every 4 hours, which was around the same time he was taking the steroid too.
This lasted until our follow up with the Medical Oncologist appointment on Dec 19. At this appointment we spoke to the Pharmacist who was monitoring all of the medications and we made a few adjustments. One was the immediate start of a taper for the steroid, the other was an increase in one of the anti-seizure medications as it made Dave sleepy and was working better than a sleeping pill, but not for long enough, and the third was when medications should be taken. So instead of taking things 3-4 times a day we switched to twice a day. So much better to organize and keep straight.
We also found out that the medical professionals didn’t have a solid idea about what had caused this set back, but were all leaning towards it being a result of swelling from chemotherapy and radiation. Our doctor showed us the MRI taken when Dave was first admitted and another just before he was released and explained a bit about what we were seeing, which relieved both of us a fair bit. There was still a part that will be monitored, but all of the irritation seemed to have diminished quite a bit between the scans. Nothing definitive to say that there was new tumor growth, but definitely a change in the irritation levels in the brain.
The bad news in this appointment was the start of the next part of treatment. The 5 day per month intensive, oral, chemotherapy. This was scheduled to start on Christmas Eve, but everyone suggested and agreed that starting on Boxing Day would be just fine. This now included a new anti-nausea medication which was stronger than what Dave had been on the first time. The backup was his other anti-nausea medication in case it was need to manage the symptoms.
SIDE NOTE: The kids had a harder time with this hospitalization than the last one. I think it had something to do with the duration and that things were unknown. I have amazing kids, they don’t necessarily act out, but I noticed that the youngest got more cuddly and started having a few issues sleeping. The older one also needed more physical comfort, but also asked a lot more questions compared to the previous hospital stay. Was really concerned about what would need to change with his dad coming home and still having issues, what he might need to do, etc. Yep, I have that kid.
During all of this life has continued to move forward. We have worked really hard to focus on being with each other in the present rather than focusing on the bad and scary of the diagnosis. So the kids still have school concerts, friends over, birthday parties and all of the other activities that go along with being 5 and 9 years old. It’s been a bit of a juggling act, and thanks to family and friends we are managing to find that little bit of peace for ourselves in the midst of the chaos we have been thrown into.
When Dave came home it was apparent that getting back to work was going to take longer this time than it did after surgery. I had been resisting asking for any financial help from friends and family as we had some money put away for a trip we had hoped to take in 2020. However, with this set back it was time to send out to our network the request for help, and I have to thank everyone of our close and extended friend circles for the help both immediately upon the release of the gofundme and since, especially over the holiday.
Dave had steadily and slowly improved as it relates to the seizure frequency. We were able to celebrate our 10 year wedding anniversary at The Keg (thanks to the lovely gift from NorthStar Ford Calgary), come together with family and friends for the Winter Solstice, and have an enjoyable Christmas both at home and celebrating with our immediate family. New Years was also enjoyable with Bowling and dinner with friends down the street.
As we leave 2019 behind we still have a long way to go with Dave’s health, cold’s still seem to be plaguing us as Seth has caught another one, and yet we are still able to enjoy time with friends, and other experiences. Who knew that there was a huge difference in balance between a 9.5″ figure skate blade and a 9″ one. Found that out this year. Now I need to buy new skates.
Our focus this coming year is continuing to work through the challenges Dave’s health is going to throw at us, as a unit, as well as ensuring that we still can have experiences that are healthy for the family as a whole unit. Being present in the moments in which we are living so that we can create memories and not wonder what happened because we were lost in the what ifs of what could be.
Our gofundme is still open and we appreciate any support that you would like to provide through that venue. If you would like to support us in a different way please let me know either through messaging here or on any other platform you find this story.
Thank you so very much to all of those who are following our story. I hope that it helps, or at least provides some sort of comfort to you.
Happy New Year!
Oh and for those who can’t figure out who Dave is in the pictures because you are used to him not having hair. HAH, steroids are letting him grow hair that he hasn’t had in almost 20 years. And it’s everywhere!
The Adams-Schlag Family 
Thanks Sabrina for keeping us updated.all our love and prayers are with you Dave and family. God Bless.