Do I really have to do school work before my MRI?
Why don't they have more movies for teenagers at this place?
Seriously, I need to be in here for another hour?
Mom why do I have to miss so much school, I hate having to catch up?
Why are you making me do my school work now, I'm so tired?
I don't think I can walk for 6 minutes mom, I don't want to do the test.
I did the 6 minute walk test and it was so hard, my heart rate went up to 170.
NO WAY, I am NOT doing the 6 minute walk test again. They should be able to use the numbers from the other study. I can't do it. My legs are so tired. I won't do it. Ok I'll do it...then he could only go for 3.5 minutes.
I'm so ready to be home mom. Why do we have to stay another night? Why can't we fly home today? (there were no direct flights on Friday night, so we left on Saturday morning)
These are just some of the questions that I was asked while we were at his trial visit. I gave him as much information as I could before his appointments so he wouldn't be surprised by what is expected during the visit but I don't always know all of the tests happening each day. Unfortunately this time I didn't know that he had to do the 6 minute walk test 2 days in a row. Think about this....after not walking for more than 1 or 2 minutes at a time probably months we asked him to do it two days in a row. I can only imagine it would be similar to not being a runner then getting up one day and being told to run a 5k and then woken up the next day to do it again.. Maybe it's possible but you have to stop, take walk breaks and after it you are pretty worn out and sore for a few days...and your muscles work like normal.
So now put yourself in Wyatt's shoes...getting told to walk for 6 minutes (after doing it the day before) knowing that they need this data for the study that you are in. Fortunately, we were able to convince him to try it the second day but he didn't last the whole 6 minutes. When he walked in the room he seemed sad, disappointed, frustrated, and relieved it was over all at the same time. I was so proud of him for at least trying and so was the trial team. They totally understood what a huge ask it was for him and supported him every step of the way.
Participating in research studies and trials have been part of our life for so long I really don't remember life without them. For those of you who have not participated in something like this, it is pretty exhausting and demanding. We weren't really sure what we were signing up for about 10 years ago but we signed up to help scientists learn more about DMD, the changes that are going on in those diagnosed with DMD, and of course to help find a cure.
This all started about a decade ago when Patrick and I attended a PPMD conference and heard about the University of FL looking for boys to participate in a longitudinal MRI study called imageDMD. Patrick looked at me and asked, "Do you think Wyatt can lie still for an MRI?" I said, "We won't know unless we try. Seriously someone has to do it." So we signed him up and a few months later our 6 year old was in an MRI machine. Initially it was just his calf and over the years they have added scans of his thigh, arm and this year his lungs.
This time we scheduled these imaging studies in 2 visits because he usually has trouble staying still. Well this time my boy got through his leg and arm images in record time so they were able to do the lung imaging during the same session. Though by the end he was tired and sore from laying still for so long (3 hours) he was so happy to have it all done and not have to go back on Thursday morning for more. All he wanted to do was get back to the room to rest...well rest and work on school stuff so he didn't' get too far behind.
This year we combined his imageDMD appointment with his clinical trial appointment to minimize the travel time and missing of school. We were in FL from Tuesday to Saturday. It was LOOOONNNNGGG but we were both thankful we were able to combine them and get them done at the same time.
As I reflect, this year was harder though than other years. If you didn't know, research studies can give you results of tests but clinical trials are not allowed, so we get results once a year at the image DMD study. I have known the progression of Duchenne for over 14 years but it doesn't make it any easier to watch your son loose his physical abilities, especially being able to walk. I know that he is declining and after reviewing his results I was heartbroken to see how much he has declined. This is the first time we have seen so much progression over just 1 year.
So now Patrick and I are really getting into preparation mode. We have purchased his motorized wheelchair, a wheelchair van, and shower chair. Next I guess we will be getting a bed for him to be more independent while in it. It is now getting difficult for him to move up and around in his bed on his own so we think it will help some. Now we be continue to think out the box of how to make the best of the situation and how to make it easier for him and us to adapt to all of the changes.. I have added the results from the last year and this year's tests. You can see what tests that do and see how everything is much slower or he has lost the ability. I am grateful he can still do what he can but goodness this is not for the faint of heart.
2-16-2022:
10 meter walk/run test: 10.59 seconds
Time to climb 4 stairs: 5.24 seconds
Supine to stand: Unable to perform - was able to complete with the use of a chair but not timed.
Six minute walk test: 186 meters (took 11 very brief rest breaks to shake out his left foot which bothered him during the test but was not an issue otherwise)
North Star Ambulatory Assessment: 12/34 points
Performance of Upper Limb: 40/42 points
2-16-2021:10 meter walk/run test: 7.14 seconds Time to climb 4 stairs: 3.48 seconds Supine to stand: 11.03 seconds Six minute walk test: 302 meters North Star Ambulatory Assessment: 17/34 points Performance of Upper Limb: 42/42 points
On our ride home Saturday morning, I told Wyatt how proud I am of all that he does with the research study and clinical trials and doctor appointments. He said mom, thanks for taking me, I love you so much and I know someone has to do it but I'm glad it's done for a while. Today say a little thank you for all of your abilities and be grateful for those things in life that are sometimes taken for granted.
Have a Happy and safe Mardi Gras and thanks for following our story for the past year.
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