We met with the SMA clinic team on Wednesday, March 25th. We were there for about 4 hours and met with a whole team of doctors and therapists ready to help Cooper. There was a ton of information thrown at us.
I walked in to that appointment more afraid than I've ever been in my life. I was terrified they were going to tell us he was too sick to save. I couldn't help but worry about having to watch him become weaker and weaker until he died.
I walked out of that appointment feeling so incredibly hopeful. Not only hopeful that our son will live a long and amazing life but hopeful that we'll be able to see improvement. Hopeful that after treatment he'll begin to get stronger and hopefully become mobile.
After we left Nationwide I was exhausted. I knew we had so many people who needed to be updated and I just couldn't bring myself to start calling and texting people to start explaining everything to them.
So I spent quite a bit of the drive writing something that I could just send to everybody at once. That way everybody was getting the same information and I didn't have to worry about leaving something out.
This is what I wrote:
It went a lot better than I expected. We saw a neuromuscular doctor, a pulmonologist, a respiratory therapist, a physical therapist and a social worker. We also had bloodwork done and they took a urine sample so we can decide which therapy is best. They basically said the decision is up to us as far as which treatment we do. Spinraza is more invasive as far as administering it but isn’t as hard on the body. They do have an oral treatment that they hope to have available in May that could replace the Spinraza but we would at least start with that just to get something going.
The other treatment is Zolgensma. That’s a one and done kind of thing but it requires quite a bit more monitoring because they are injecting a virus into his body with the medicine so his liver could become inflamed. They would put him on a steroid to limit the inflammation but that would suppress his immune system so we would basically need to be quarantined for anywhere from 2-5 months. There have been 3 or 4 deaths related to this treatment but all kind of had underlying issues. The Zolgensma was actually developed at Nationwide so that’s pretty cool. She made it sound like the Zolgensma has a better chance of showing improvement so that’s what we’re leaning towards right now.
We also got a couple inhalers. For albuterol and Flovent. And we have a cupping device to try to break up anything in his chest and lungs and we’ll more than likely end up with a cough assist machine. His chest X-ray he had done last Wednesday showed that his right lung has something going on towards the bottom. They think it’s because he can’t ever get deep enough breaths to fill his lungs. They aren’t overly concerned about it right now but that’s why we saw respiratory. It makes him more susceptible to pneumonia.
We will have weekly bloodwork but that can be done in Toledo and they’ll want to see us monthly at Nationwide for a while.
The neuromuscular doctor basically said he has healthy nerves, he has sick nerves and he has nerves that have died. She said the ones that have died we will never get back. She also said we won’t know what or how many have died just yet but the medicine will help the sick ones get better and it will keep the healthy ones healthy.
The physical therapist seemed to be pretty impressed with how well he sits and moves his arms and plays with toys so that was good.
We should hear back about bloodwork by Monday and will need to decide on which treatment we want by then.
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At this point we're just waiting on the results from his bloodwork to be sure we can move forward with Zolgensma. Cody and I both feel that it will give him the best shot at improving and hopefully gaining back some, if not all, of the skills he has lost. We know there are more risks with this route because of the steroids and lowered immune system but we don't want to look back on everything in a few years and wonder what would've happened if we'd chosen Zolgensma instead.
This treatment has to be administered before he turns two so we're hoping all his numbers look good and insurance approves everything right away. Even though it's only a one time treatment, it has a cost of just over $2 million. We've heard that some insurance companies don't like to approve it right away because they expect families to change their minds and go with the Spinraza instead.
Despite everything we're facing, the only word I can think of to describe how I'm feeling is thankful. I'm just so thankful for everything that has happened in the last week and a half. I'm thankful for the amazing medicine we have. I'm thankful for the doctors and nurses and researchers who have dedicated their lives to saving others. And I'm so thankful that my Coopy is finally going to start getting better.
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