Tuesday, April 17, 2018

I have this hope...

I had the privilege to go to a special luncheon last Saturday for local families of Spinraza patients. I met a man in his 50s who started taking Spinraza at about the same time I did, a mother whose 7-year-old daughter is on Spinraza, and a mother whose 3-year-old daughter was one of the earliest Spinraza patients. It was really wonderful to meet these people, hear their stories, and get to share my story with them.

The thing that brought us all together was Spinraza, and I know one of the main purposes for bringing us together was to talk about how great it is. And there is nothing wrong with that - I'm a big fan of this treatment, and I'm excited to see how it will help me and lots of other people. I am thrilled to know that young children with SMA now have the chance to develop their motor skills, and that adults with SMA can maintain and rebuild their strength. I am so thankful to know that Spinraza is just the beginning - it has opened doors and increased research opportunities for other treatments and possible cures to be discovered. It's a miracle, and it is changing lives all over the world.

But my hope is not in a drug called Spinraza. Long before an answer was found, long before the FDA approved it, long before doctors were able to conclude their diagnoses with: "...but a treatment is coming soon," I found peace and hope and joy. It came in the form of a relationship and a promise - and it didn't ignore my disease, but it also wasn't contingent upon it. I chose to take hold of it as a small child, but it's taken a lifetime to understand. I've wrestled with it, desperately clung to it, and almost lost it at times... it's stretched and grown and deepened, at about the same rate as my muscles have tightened, shrunk and atrophied.

No copyright intended.  image does not belong to MissVenShaw.

No matter how small, weak, sick, or unable I am or become, Jesus is strong and constant and great and mighty to save me. He promised never to leave me and never to let me go, and after all the things we've been through together, I can't help but trust him. He promised that he knows and understands me fully, and when I read and remember all that he sacrificed and suffered for me, I know it is true. No matter what else changes in my life and my world, his promises stay the same. His love, mercy, and faithfulness to me has never, and will never fail - this is my hope! 

I'm thankful God has given me the chance to experience a treatment for my disease, and that I get to see his creativity, intelligence, and ingenuity through medicine and science. But whether or not Spinraza has any effect on my body, I know my life is purposeful and beautiful and valuable, because Jesus has saved me and made me whole.

Friday, March 2, 2018

Setbacks and Progress

I had my first maintenance dose of Spinraza on February 5, and with that milestone I set some personal goals. See, I've learned that this treatment provides potential - potential for muscles to strengthen and rebuild - and I needed to start doing some serious work to live up to this potential. More stretching, more exercising, more intentional diet, more breathing... basically just moving and working out whatever I can. I kicked off this knew season with a little trip to Florida on Feb 8-14, to soak up some much-needed vitamin D and deep-breathe that salty sea air and digest as much seafood and fresh fruit as possible. Mission accomplished, I came home determined to get to work.

But five days later, on Feb 19, I woke up with a sore throat and hacking cough, and three days after that, I found myself in the ER, getting chest X-rays, blood work, IVs, and without much hesitation getting admitted with pneumonia. I felt weak, exhausted, dehydrated, congested, and discouraged.

Setbacks. That was the title that overwhelmed my mind for the four days I spent in the hospital, and to be honest, it's continued through some darker moments since I've returned home this week. Wheezing and coughing without much in the way of results and relief eventually burns a hole or two in the human spirit. It felt like I was wasting away, shriveling up, getting weaker at the time I should be getting stronger. I knew that taking Spinraza wasn't going to automatically make me immune to illness for the rest of my life, but it still made me disappointed to face my old enemy again so soon.

Progress. In my brighter moments of optimism and clarity, I have noticed some things that were different about this experience. I've been hospitalized for pneumonia many times throughout my life, but I believe this was the first time I was never put on oxygen support. The whole time I've been sick, my O2 saturation levels have been 96% or higher, with no outside assistance! The nurses told me this probably was a big factor in me being able to go home so soon - they didn't have to ween me off the oxygen. I was only in the hospital for four days - which is a noticeable improvement to the two-week stints I've had to endure in recent years. My hospital stay also did not include the rather uncomfortable measures of a bronchoscopy or nasopharyngeal suction, which have been necessary in the past. And the respiratory therapists utilized a High-Frequency Chest Wall Ossilation vest, which I've not been strong enough to handle in the past, but worked really well for me this time around. I have an idea that Spinraza has something to do with these remarkable bits of progress.

It's been over a week, and I'm still coughing, still fighting, still working toward recovery. But I'm doing better and getting stronger every day. Thankful for minimal setbacks and encouraging progress.

Monday, January 29, 2018


One more week until my first post-loading-dosage treatment! Medically speaking, my life has been pretty quiet for the last three months, which I am incredibly thankful for. There's been no more swelling or leaking. I've dealt with some sciatic nerve pain, but that is improving with stretches and a new seat cushion.

The big question people constantly ask me is: Do you notice any improvements or change? It's hard for me to identify specific things, but others have told me that my neck seems stronger and I'm able to bend my arms easier.

Over Christmas break, I tested my ability with some hand-crafted projects: a cross-stitch "baby's first Christmas" ornament for my darling baby niece, Josie, and this nifty crochet hat for Kevan, which he said reminds him of old-school John Reuben:

I was pleased that I was able to complete both projects, and in a matter of days instead of weeks. I haven't been able to do these kinds of projects for about three years. One thing that made me laugh is that while I was working on them, my eyes got tired before my hands did! Being able to do these things is a huge encouragement to me, because it means my fingers, wrists, and arms are getting stronger. I am so thankful to be able to use my hands to create things that are beautiful and useful.