Hi Everyone! It’s 2019…. We hope that you all have a healthy New Year. Oh Yes…. We celebrated last night. This video is rather embarrassing and I can’t believe Derek convinced me to post it… My killer dance moves made them all smile- so it was a win!!! Hope you all smile and love a lot this year. Big love coming from the Michauds!
Thank you for checking back into Standblu.com. It’s Sarahjean here…
I wanted to begin by explaining that the tone of this entry may feel more mechanical and matter-of-fact than previous posts. Derek and I decided that in order to fully fill you in, we need to be business with this update. So bear with me… this kind of writing is a challenge for me.
Derek and I made a video last week to post, and it turned out to be rather hilarious to record. We had a few technical issues and spent most of the video with bees buzzing around us, Derek laughing and me squinting from the Sunshine. (Yup, we took that video outside). But the days flew by at mock 20 speed, and we did not get it online with enough time for the importance of yesterday -- 10/17.
10/17-- Yes… Let me explain.
The first really important thing that has happened since our last update is that Derek was accepted into the “Brainstorm” Trial. I think we mentioned this when we made our last video. The details of this trial are complicated, but also really incredible. It is stem-cell based and very intensive. Yesterday, Derek spent the day at Mass General Hospital in Boston. He received a bilateral bone aspiration in both hips. 5 weeks from now, the fluid will return to Mass General and Derek will receive a stem-cell transplant- Hopefully!
This particular trial has a 50/50 placebo ratio. So Derek has a 50% chance of receiving his own stem-cells during the transplant, and a 50% chance of receiving saline. Fingers crossed he receives the stem-cells! Send good vibes…
In addition to the trial at MGH and all its details, Derek’s physical changes have been significant. Let me fold back to the video attempt from last week again…
As we made the video, we had an immediate challenge. Derek’s respiratory function has decreased significantly since our last video, and he is now struggling to speak, eat, and sleep through the night. When we tried to record, his speaking voice for the video it became a challenge and we quickly learned that we may need to try other means for future updates. Because of his respiratory change, he has been put on a ventilator. At this point, it is suggested that he focus on using it only during the day until he gets comfortable enough to sleep with the machine.
So far so good! His cheeks are pink and he’s acting more like his silly old self.
In addition to this being a very big week for Derek with being hospitalized and starting the trail, he has also started receiving home care services. The care is incredible and will ultimately sustain Derek’s independence and even more so his safety for the time being.
We feel blessed to have meet you, Hadson and Grace! Thank you so much for your help!
Moving on- Derek and I wanted to send out some deep Thank You’s.
First, to all of you for your continued support on the GoFundMe page. Every dollar of these donations are being put to work. The equipment and home care costs are extreme. And we deeply thank you for your support.
Specifically, we would like to thank One Anonymous Donor for offering to make a recurring donation specifically for Derek’s Home Care costs. We are not sure who you are… But we thank you from the bottom of our hearts. We appreciate that you know how intense this cost is and that you have offered your kindness in this way. Your donation helps take the edge off of how expensive Home Care services are. One of these days - we hope to know who you are - So we can thank you Face-to-Face. Yes yes!!
Our Thank you’s need to continue right to Lauren Peterson and Keri Walsh. Thank you for putting together the incredible fundraiser for Derek back on August 12th. Lauren and Keri are two of the most genuine and caring women we know. They took this fundraiser head on and quickly added in two more incredible women to help pull off the day with so much love. Thank you Francesca Gove and Sandy Littlefield!
You 4 are just incredible. Thank You so much to everyone who had a hand in all the details to make that day so incredible. George Peterson, thank you for your amazing speech!!! Also to everyone who came out that day and to those who contributed to the silent auction that afternoon. What a turn out!! The day will forever be precious to Derek and me. The love and feeling of support was intoxicating and took Derek and me for an emotional ride of Joy for weeks.
The week before that fundraiser, Derek’s employer, Zoll Medical, held an Ice Bucket Challenge on their main campus in Chelmsford Mass. What an amazing day! Our two little ones, Harper and Arlen, joined us for this benefit and it was a blast! Lots of buckets, ice, getting soaked and watching Derek laugh… and to boot they even had an ice cream truck. But the most wonderful thing about that day was the amount of awareness that was raised within the Zoll community. We wanted to send an extra special Thank you to Peter Dezac, Paul Diaz, Darlene Coutu and Jim Crotier…. Thank You!
There is so much more that we need to fill you all in on… But I think that is enough for today. We will be back soon and perhaps then we will be able to avoid the bees and technical issues and we can get Main Man D on screen so you guys can all see his smile!
Peace and Love, Sj
Derek and Sarahjean's first video update.. Thanks for watching!
Lets get to know this guy right here a bit better.
Derek, my goodness there is a lot to say about him.
When I met Derek over 15 years ago it was a game changer. For a lot of us our 20’s were filled with crazy stories and late nights. Mine was no different.
Then one evening over some strategic planning of my now sister-in-law, I meet this unique, strong man and I stopped in my tracks.
I remember being impressed by Dereks endurance.
Just a couple weeks after Derek turned 43 he was diagnosed with ALS.
(Amyotrophic Lateral Sclerosis).
He just turned 44.
This disease has been brought out to center stage by Pete Frates and his brilliant idea of creating the Ice-Bucket Challenge. Maybe you have heard of it? If not, you should check it out.
It is hard to believe that it’s been close to a year since our lives changed forever.
About a year ago, our family was confronted with life changing medical news. In a flash everything that we had created and dreamt of came to a halt.
Every detail needed to be rethought.
Like a longing stare or an awkward silent pause, time did stop for us.