It seems every post I write these days is lament filled. I hate that. I don't want to be sad, defeated, exhausted from depression, anxiety, and stress, but I am committed to being honest.
This might be uncomfortable, but this is honest.
If the seizures don't knock him down, rest assured the meds will.
Below is what a medication increase looks like. Notice the similarities to postictal events? This is one depiction of why I am desperate for non-pharmaceutical treatments.
Quality of life matters.
Pharmaceuticals have their place. I would never want to withhold them, though many are artificially withheld due to pricing. Even still, we use them because we must. But when you've tried over a dozen with varying degrees of success, none permanent, all with significant side effects, it's time to move on. It's time to get creative.
Quality of life matters.
This is no way for an eleven year old boy to live. Spending half his day hunkered down in bed because the medication induced fatigue makes it difficult to raise his head; should he manage, he then deals with the headaches and nausea.
Quality of life matters.
I want to scream. Throw things. Weep. I watch him walk around the house fussing and miserable. Saying, "I'm so tired. I don't know why." We can barely get two lessons of school work in which means we're losing ground. I hate that we are increasing his meds. I hate that we're going to increase them more. Then I remember his blue lips on Monday and what we're hoping to accomplish by this increase. But my heart screams...
Quality of life matters.
This is how, once upon a time, we found ourselves in Detroit, watching our son wheeled away on a gurney, knowing full well he was about to endure the most radical brain surgery in existence to date. Full hemispherectomy is more common than the subtotal, which was Trevor's path. To God we wish we would have done a full hemi when he was a toddler. Now we're faced with knowing that pharmaceuticals are not going to improve his condition and moving forward with completing his hemispherectomy brings with it severe impacts. Impacts such as the loss of his right arm. He's hitting wiffle ball home runs over the house right now and nick naming himself Jackie Robinson, his favorite baseball player. He would lose that. He will lose, at least temporarily, his right leg mobility. He could lose his ability to expressively speak. I can't even imagine what this would do to him psychologically. Hydrocephalus would become a more intense concern.
Quality of life matters.
Knowing that completing his hemispherectomy is an impossible decision led us to Boston for an experimental treatment, tDCS. To our surprise, because when you're at the desperation point you're afraid to even hope anymore, Trevor responded to the treatment. He was not seizure free, but he was greatly improved. His seizures were shorter, less frequent, and dramatically less intense. He had no postictal periods for several weeks. Some of his seizures were so mild, a neurologist could have missed them. Knowing that the benefits of the treatment would slowly fade the further out we were from it has not helped the emotional toll of watching him regress. We were led to believe that we would be able to access this treatment at home. Eventually. No promises were made about a timeline, but certainly we were inspired to hope. I learned yesterday that what we had hoped for, on-going access at home, isn't on the horizon. Although the team is working through bureaucratic barriers to get Trevor a repeat treatment. A treatment that will require us to either travel to Boston daily for two weeks, or somehow find a place to stay. Boston is not a cheap date. Traveling with a child like Trevor is a hardship. But...
Quality of life matters.
I'm so very tired. There are days I'm not sure I can breath one more minute, so intense is the struggle. Someone who cares about me deeply recently expressed that it might be time to accept I can't rescue Trevor. This is a hard truth. A hard truth. I know it will offend some, but I also know in ways most can't fathom that it was spoken in truth and love. Every epic battle scene I've read or watched on a screen races through my mind. In the most poignant, gripping stories, the hero is lost. I feel like Trevor is that hero, and we, his faithful few are fighting off demons and dragons, in the forms of seizures and fatigue and side effects, with all our might. I don't know what Trevor's timeline is, though I find great peace in clinging to the promise that it is foreordained by One who loves him more than I. In the meantime, I will continue to battle with all my might even if that means simply making each of his days as joyful and peaceful as possible.
Quality of life matters.
Comments