…Until They Get Punched in the Mouth
Part of the big plan involved bringing Asher’s steroid dose down to zero, if possible. If you don’t know anything about steroids, one thing you should know is that a patient who is taking steroids can’t just quit cold-turkey. The dose must be stepped down gradually. One of the requirements for the clinical trial Asher was signed up for was that he be below a certain dosage, about two milligrams, or preferably at zero before the start date of the trial.
And by the second week of March, we were close.
In the eloquent words of Mike Tyson: “Everyone has a plan until they get punched in the mouth.” The weekend of March 9, things started to go sideways.
March 11, 2019 Update:
Hi everyone. Thanks so much for praying for us and caring for our family.
It’s been a bit of a roller coaster for us this weekend. We spent some quality time with old friends who live in various parts of the southeast, and it was refreshing for everyone.
At the same time Asher began to have some symptoms occur that coincided with weaning off steroids. The symptoms were drastic—like a cliff. Friday he was fairly normal. Saturday, he began having headaches, and was noticeably weaker on his already weak left side.
To expand on this a little, our super group of friends was gathered at a friend’s house a couple of towns away. We ate deliciously smokey Memphis BBQ, caught up with one another, shared some laughs, and even sang some songs. The kids were all playing together, and it was grand, but Asher was noticeably weaker, and couldn’t really keep up.
At one point, Asher and I sat down at the piano in the foyer. Asher had been taking piano lessons for a couple of years, and I asked him if he could play some of the recital piece that he had been learning just before he was diagnosed a couple of months prior. He put his hands on the keys and tried to play, but we saw that his left hand, though functional, was so weak, he couldn’t apply enough force from his wrist and hands to push the keys down. I had him do a quick “squeeze my hands” test, and the weakness was apparent. My concern began to grow.
By yesterday (Sunday), his left side of was functioning at about 10%, and speech became more difficult.
This was one of the fastest symptom changes I’ve ever witnessed. When he woke up on Sunday, there was another headache. We ate a late breakfast at Cracker Barrel with our friends. He seemed to have a little trouble eating, but no choking or anything alarming. However, when breakfast was over, and we went outside to say our goodbyes, he could barely walk, as his left side was hardly functional. I had to pick him up and take him to the car.
This morning he was vomiting, and was unable to go to the bathroom, and couldn’t move his left arm at all.
We’re thankful that his first appointment was at 7:30am this morning, because the army of doctors and nurses were able to stabilize him quickly. He got a heavy dose of steroids, and has been admitted to inpatient for monitoring. He has improved drastically, and continues to be doing so.
Needless to say our family was taken aback by how quickly things appeared to be unraveling. I’m quite shocked at just how fragile our bodies can be.
We’re about a week out from the end of radiation, and we’re asking ourselves about how our time away from the hospital is going to look.
Top of the list is always praying that God would heal Asher, and that we would be consistent in our faith and trust in Him, regardless of his answer.
Pray that his symptoms would continue to diminish as they have been all day. We especially pray that his symptoms will be minimal during our break.
Pray for our emotional health. It’s indescribably hard to watch your child suffer.
Pray that Asher would continue to be courageous. He is fighting bravely and has not given into despair about his body.
I can’t tell you how joyful it makes me feel to know that when I send this, a multitude of people will not only read it, but act. I’m so grateful that you all are lifting us up in prayer.
So we got punched in the mouth, the gut, and a few other tender places. How could this be happening so late in therapy? We are supposed to go home in a matter of days! The “plan” was falling apart.
March 12, 2019 Update:
Just a quick update, as I know many of you are concerned. There have been small improvements in each area today: arm and leg movement, headaches, nausea/vomiting, speech and swallowing. The doctors want him to stay in inpatient at least for another night, just to make sure he stays on this upward trajectory.
Please continue to pray for him.