Dear Family and Friends,
Yesterday, we celebrated Tyson’s 45th birthday!! It was such a stunning day here in Upstate New York, perfectly fitting for his special day. In honor of his birthday, I want to share a little update on him. The most important thing to know right now is that Tyson is continuing to work hard on his recovery, specifically, weaning from his ventilator. When last I updated you all, I had described the weaning protocol Tyson was following. The goal has been to gradually increase the amount of time he weans each day at a specific level of pressure support on the ventilator until he is weaning most of his wakeful period. Once that happens, he “graduates” and is bumped down level of the pressure support. To give this some context, he was at a pressure support of 8 when he was first placed on the vent in February of 2015 and during the extended period of time that was spent working to get the FDA approval for the stem cells here in the U.S. from India, he had declined and was eventually at a level 15 which meant the vent was providing much more support.
We started this in October 2020 with our amazing new pulmonologist and by the fall of 2021, Tyson had reached a level 8. This is significant for a number of reasons: 1) he once again showed that he is capable of regaining strength, something that is virtually unheard of for patients with ALS symptoms, and 2) the level 8 is generally where a patient can begin trach collar trials. This has been our first big goal and he has reached it. You may remember that he was able to attempt this in the fall, even though it was just for a short moment.
As I mentioned previously, we know firsthand that healing is not linear. Shortly after Tyson hit that milestone in the fall/winter, I noticed Tyson sort of slowing down; his weaning sessions were not as strong as they had been in the days and weeks prior and he seemed more tired than usual. Naturally, if he could tell me what was wrong, I could help him faster but despite not being able to communicate the way we used to, I’ve gotten good at detecting any micro changes with him. I study him every moment I can so that when something begins to shift, I can pinpoint it faster. His lungs didn’t sound great and I was suctioning him more often than usual, so I asked our doctor if we could test his sputum. That culture came back showing a bacterial infection in his lungs which we treated easily. As soon as that round of antibiotics was finished, we had to start a round of IV antibiotics for yet another infection. That one was slightly more stubborn and took longer to treat but by March, he was clear and ready to resume the weaning program.
He essentially took a break from weaning from late Dec-Mar while he recovered from the two infections and when we resumed, we had him start over at a 9 pressure support so he could ease back into it (imagine taking a couple of months off of a treadmill routine-you’d have to restart at a slower pace). Presently, Tyson is back at an 8, weaning 1 hour, three times each day. If he continues to do this well, by Monday, we’ll add 30 minutes to each session. Hopefully by the end of June we will feel comfortable attempting the trach collar trial once again. You can surely see just how slowly we need to go with this entire process and that the pace is 100% dictated by Tyson. There are days where he just doesn’t have the strength and energy to wean and on those days, I reassure him that it’s OKAY and that resting is equally as important as the times he’s working his tail off. I know Tyson gets frustrated which is why I keep talking to him and why we cheer him on and celebrate every single time he weans.
When Tyson was first ventilated in 2015, the hospital he recovered in wanted him to try an eye-tracking device to help him communicate. At the time, Tyson was not interested in this at all. He felt that if he relied on this device in his recovery, he would get weaker. We had both memorized a letter chart which was how he communicated to me (there were five rows of letters and I’d start by saying “1…2…3..” and if the letter he needed was in that row, he’d raise his eyebrows and then I’d go down that row of letters and when we reached the one he wanted, he’d again raise his eyebrows. This must sound nuts but we were so good at it and could actually communicate quickly! Anyway, he didn’t want to lose this. Obviously he eventually did a few years later in 2019. Dr. Shroff had periodically tried to coax us to try the device again once he lost the eyebrow movement. Now, I am the most positive person when it comes to all that Tyson is capable of doing, but I really couldn’t see how it would work since he was unable to voluntarily look at things. I could put my face right in his, he could lock eyes with me and follow me which was outstanding, but not without my face there for guidance. So how could he possibly operate an eye tracking device? I mentioned to his Speech therapists that we were interested in trying and they excitedly told us that they actually have these devices and would bring them to the next visit. These devices can do incredible things in terms of communication; a patient can choose from pictures or use a keyboard to type things out, etc. We started out with a simple YES/NO. The screen looked like two flash cards, side by side. Of course we’d ask questions that would elicit an obvious YES or NO response. It was sensational to see him answer us! He moves very slowly and Dr. Shroff reminded us to be patient and give him time, as these connections in his brain need to re-strengthen. The device also allowed us to follow his micro eye movements, so for example, if we asked him question that was a definite NO, like, “Is your name Larry?”, and his eyes were not yet on the NO card, we could see the little dots (his eye location on the device) indicating his effort to travel his eyes to the right direction! We have had about 8 sessions and have witnessed an improvement from session to session. He’s already moving his eyes more deliberately and his range has improved as well. I have to hold his eyelids up and blink for him which is probably driving him crazy but it’s only temporary until those muscles strengthen back up, too. During one of the sessions, the boys happened to be home from school so I called Calvin into the room to see what his dad was doing. I asked Tyson, “Do you love hearing Calvin tell his sports stories?”. Tyson replied, “YES, YES, YES, YES.” His therapist and I both teared up and Calvin hollered, “YES! Let’s GO, Dad!”. Such a special moment.
*AS WITH THE WEANING, this small but significant update is WHY therapy is so incredibly vital to his recovery. Look at how his body responds when he is healthy, when he’s receiving his stem cell therapy, and when all of that is partnered with physically working his body. His body responds! Remember too, that the stem cells work more effectively and efficiently when they’re put to work. This is proof of the synergy of this system and of Tyson’s endless determination.
I also mentioned before that our doctors thought it would be helpful to have a neurologist lean in and review his case. The hope was that they’d be intrigued and possibly have something to offer to his current plan. I mentioned, too, that I had to good fortune of speaking with a neurologist in Boston last summer. She was kind and lovely. She was impressed with Tyson and immediately began to think of ways to help. She offered to take Tyson on as an official patient if we were able to travel to Boston. Knowing what a difficult journey that would be for him, we opted, in the meantime, to see someone more local. So, with the help of Tyson’s brother, Dontay, we traveled to Syracuse (30 miles west) to meet with a neurologist last month. Before our meeting, the doctor had gone over Tyson’s history/notes and while in her office, I brought her up to speed about his current progress with the stem cell treatment and the vent weaning. She seemed baffled at what Tyson was capable of doing with respect to the weaning and admitted that she knew very little about stem cells, which in my opinion was fine because that wasn’t why we were reaching out. What we wanted was a fresh set of tests done for Tyson so we could get a clearer picture of what’s going on in his brain, spine, and nervous system. We wanted to use a new MRI, SPECT scan, EMG, EEG, etc. to help establish a baseline which would help us track his progress. We use baseline tests all the time with him through bloodwork, measuring his muscles, measuring how far he can open his jaw, volume capacity in his lungs, etc. We go back and re-measure periodically to track any progress or decline. The last time we had any of these machine/device tests done was in 2011 and 2012, WELL before the cardiac arrest (which resulted in his heart stopping for 35 minutes and subsequently the trach being placed), and BEFORE he began the life-saving stem cell therapy. Look at how much transformation has happened since then! I figured this would be a normal request to help establish a new patient. Unfortunately, the doctor did not feel it was worth it to run any of these tests. Not worth it. To add insult to injury, she felt that the weaning was maybe a waste of time because she felt that he would eventually succumb to the ALS symptoms. We were obviously very upset. It felt as if she was closing her eyes to what was directly in front of her. I can imagine that she took one look at him and decided he was a classic case of ALS. But she refused to look further. And maybe it’s because I’m an angry, frustrated wife, but I hardly think ordering a few basic tests was too much to ask. I felt awful for putting Tyson through the hassle of getting him up and out of the house for a completely wasted trip. I was happy, however, that he handled it so well.
After we got home, I had all of these thoughts going through my mind from our countless run-ins with neurologists in NYC in 2011 and 2012 who told us to pack it up, “go home and make videos so your son has something to remember him by”, “go home and make him comfortable”, etc. It didn’t take long, however, to snap out of it. It is unfortunate when things like this happen, but it should not deter us from continuing on our path. Yes, we need a neurologist but she wasn’t the one. Over the years, we’ve assembled an astonishing group of doctors, nurses, and therapists that now make up Tyson’s medical team, as I call them. Let me tell you why they’re so special and what they share in common with each other: they are endlessly looking for ways to help Tyson and to facilitate his progress. They are researching ideas, methods, tests, etc. and never, ever relent. I get it- he’s unable to move, he’s unable to speak, he’s dependent on a machine for breathing, he shows all the devastating signs of ALS. I also know what I’ve witnessed him achieve and overcome in the past few years. I know how powerful these stem cells are, I’ve watched them in action. I know how his body responds to therapy and I know we must continue to be patient. Tyson is working so hard and he has the right people surrounding him and that’s all he needs.
So what’s next on our agenda? He’s going to STAY HEALTHY (so we don’t have any more pauses in our progress), and he’s going to continue with his weaning with our goal of making another attempt at the trach collar trial at the end of June. We have applied for an eye tracking device and are just waiting for his insurance to approve it. It will be incredible to watch him begin to communicate with the boys. I am still eager to get Tyson a tilt table so we can start standing him up. Again, sorry for sounding like a broken record here, but we see how he responds when he’s put to work, so I really want to keep that going and slowly stand him up. Lastly, I am now able to bring Tyson out to our back deck to enjoy the beautiful weather, the fresh air and hearing the boys play. We’ve been able to do this a few times already this spring and we look forward to bringing him out in the summer evenings when the temps are still warm but the sun isn’t beating down on us.
As for the boys, they are both doing so well. They love school, they adore their friends, their teachers, and their coaches. They both played basketball this winter and are now in the middle of their spring baseball season. Calvin is my height, a fact that he enjoys reminding me of every chance he gets. I am thrilled that he’s tall and strong(er) because he can now help me with Tyson when I need an extra hand. Abren is hilarious and loves to come into Tyson’s room to take over his music selection or to put his favorite Nickelodeon show on t.v. He likes to remind him, too, that Dwayne Johnson is the coolest. Abe’s been doing funny things like this since he was able to walk- he’d stumble into Tyson’s room while Tyson was watching golf and just change the channel to a kid’s show in the middle of someone’s backswing, haha! And one of my favorite things in the world is when I overhear the boys’ little voices (although Calvin’s isn’t so little anymore) coming from Tyson’s room. They talk to him all the time about anything from school to sports to Spider-Man and so on. Last night, Abren threw his leg up onto Tyson’s bed to show him his scraped knee from when he fell of his bike and proceeded to tell him all about it.
I know so many of you want to know how Tyson’s doing and how we’re all doing. It’s been a long, long 11+ years. Life has been exhausting, depressing, scary, and sad. I still feel so angry for Tyson for what he’s been put through but he keeps going and that’s encouragement for me to do the same. I’ve said this a thousand times- my heart aches every single day. If possible, it hurts even more when I’m watching our boys play sports because their dad is missing all of it and they’re missing out on the joy of having him in the stands or coaching their teams, and I’m missing out on doing these types of family activities with my husband. We have managed, however, to make life so good in our home with a great routine and being fully resolved to find joy in our current situation. We know we have countless things to be grateful for so we focus on those while we work to heal him. I am so full of hope for Tyson and I know he is trying so hard. Please continue to keep him in your prayers.
Thank you all for reading this update!