Dear friends and family:
Each update I bring to you seems to be spaced further and further apart from the last. I know how much hearing about sweet Tyson means to you all and I am truly sorry for keeping you waiting an entire year. This feels very on-brand for 2020, doesn’t it? The truth is, this past year has been one of the more challenging ones yet. Before I go any further, I will share with you that Tyson is all right and we both want to thank our friends from the bottom of our hearts for organizing the fundraiser for Tyson last year and to express our sincerest gratitude to all of you for the incredibly generous GoFundMe donations we received. These funds were dedicated to Tyson’s monthly medications and supplements orders, physician phone consultations, on-going therapies, and so many other things that help our family throughout the year. You have made such an indelible impact on Tyson, me, and the boys and we just feel so fortunate to be surrounded by such loving and supportive friends and family. Thank you, too for all of the wonderful messages you’ve sent our way. I read each and every one of them to Tyson. I’ve said this before but it certainly bears repeating often- this journey Tyson and I are on is excruciatingly painful and we find so much strength and courage in your love and support. Thank you!
In retrospect, this year has been one that has required calm and self care. It’s been a long time coming and a long and emotionally draining ten years helping Tyson fight for his life. We’ve been to so many doctors, begging them to please not dismiss us, yet told to get our “affairs in order”. A year into our search for answers, I remember us leaving one prominent physician’s office on the Upper West Side together feeling so utterly terrified after being told to make a video for our son so that he would have something to remember his father by. We chose instead to keep going in our pursuit to get him whole again. We went onto try multiple invasive treatments, traveled halfway around the world for life-saving stem cell therapy, we’ve been to physical rehabilitation centers, told how much time he has left and simply defied the odds along the way. Perhaps the “one” that stays with me the most is having witnessed Tyson slip into a cardiac arrest in which his heart stopped for 35 minutes in the E.R. where the doctors subsequently performed countless rounds of CPR, breaking 13 ribs in the process only to come and tell me, “I’m very sorry, Mrs. Fowler, but we’ve lost his heartbeat. We’ve tried but we can’t get it back.”. I remember pleading with them to please keep working on him. After the team of doctors miraculously recovered his heartbeat, I remember watching him lie peacefully in a therapeutic hypothermia protocol (google this one), crying and praying as I held his hand, watching him finally, slowly begin to wake up. Everything drastically changed for us at that moment and it sometimes feels like we are in a living nightmare. I continue to try to be both mom and dad to our angelic boys who are asking more and more questions about Tyson, some of which, I just don’t have the answers for. Thoughts of our long journey together don’t just creep in from time to time. I think of Tyson every waking moment of the day, sometimes feeling an instant sense of panic as I wake up in the morning to start my day and ending the day lying in bed trying to research more ways to help him and then, I have dreams about him. I miss him so much, it physically hurts. And yet, I am acutely aware of how fortunate we are that he is still here with us and that I can walk into his room and give him a hug and a kiss anytime I want. I’d be lost without that. This is Tyson’s story and as much as I’d like to avoid having the subject swing my way, it must be said my nerves are completely shot.
The timing of this update is great. We celebrated Thanksgiving this week which has forever been mine and Tyson’s favorite holiday together and it’s the perfect time to reflect on the year, however fraught with its ups and downs. I’ll start our story of 2020 (thus far) in March, when New York state shut down due to the Covid-19 pandemic. The boys’ school transitioned to remote learning and at the same time, we stopped all nursing and therapy visits. Fortunately (or not) for the boys, the word “quarantine” wasn’t a new addition to their vocabulary. From a very young age, they knew that if either of them got a cold or a stomach bug, they’d subsequently be quarantined from their dad’s bedroom until the illness had safely passed. So, they understood right away how important it was for us to actively protect Tyson during this pandemic. They understood the concept of sacrificing some of the social luxuries that we were used to for the sake of protecting Tyson. I happily took over the daily therapy sessions for Tyson and also facilitated our amazing nurse so that she could continue her weekly visits at a distance via FaceTime. She taught me how to draw his labs which I would then run out to her car so she could deliver them to the hospital to be spun. We felt extremely well taken care of during the initial scary moments of the shut down.
While it was obviously very upsetting to have to abruptly stop all of Tyson’s therapy sessions, we decided to focus on the things we were able to work on during this holding period. One of the easiest things we could turn our attention to was the vent weaning. Before the pandemic, I had been researching pulmonary physicians for Tyson to help us get on a proper weaning schedule and to help monitor his progress. Once things began to shut down here, a visit or even a consultation with a pulmonologist was out of the question as these doctors were in extremely high demand, dealing with emergencies only for many months and rightfully so. We were able, however, to work within the parameters we were given, meaning- I was able to adjust a few of the settings safely and of course, I knew how to monitor him well enough while he weaned. Tyson had been weaning throughout the winter and spring, although not very consistently. Remember, he took about 2-3 months off last summer to allow his body to recover from the multiple pulmonary emboli he suffered from that spring. So, understandably, he was sort of struggling at his prior vent settings. In June of this year, I had noticed that he really couldn’t tolerate weaning for more than an hour and that his volumes would dip from mid-300mL to single digits. These numbers represent how much air is filling the lungs. For Tyson’s size (he’s 6’3”), his volumes should really be around 400’s-600’s. I discussed Tyson’s difficulty weaning with our respiratory therapist who suggested that perhaps changing out his trach would help the situation. I had asked him to come here to watch me change Tyson’s trach because it was only my second time doing so and for someone with a background in the fashion industry, this wasn’t something I was super comfortable doing on my own! The trach change went very well and while he was here, we put Tyson on the wean so that he could try to troubleshoot some more. We noticed his pressure support was very low so we raised it back up to 15 which was well within his prescribed parameters. Think of pressure support as an assisted pull up; Tyson’s doing the work, but the vent is assisting him to a certain degree. Immediately, we noticed higher volumes and more consistency with each breath.
Because of his history with pneumonia and P.E., our doctor ordered an x-ray of Tyson’s lungs and an ultrasound of his neck (I was worried he may have swollen lymph nodes, too). We needed to avoid having to make a trip to the hospital for these tests so that we didn’t inadvertently expose Tyson to Covid, so we arranged to have technicians come to the home and perform the tests at his bedside. The tests showed his lungs were fine; they had some scarring or spots from blood clots in the past but overall, they were in good shape. It also reaffirmed that his trach was positioned perfectly and that the PICC lines in his chest were in good position, as well. The ultrasound showed that his lymph nodes were normal in size.
With the new trach, adjusted vent settings, and confirmation that his lungs were fine, Tyson was looking really good. He and I started out on July 1 with a fresh approach to weaning. I said to him, “Let’s just do one hour today and see how you feel tomorrow.”. He knows the deal. We go at his pace. Although he cannot talk to me or communicate much at all, I am able to read him well and when he’s on the wean, I steadily monitor his oxygen levels, heart rate, and blood pressure, as well as vent numbers like his volumes and his minute ventilation. Tyson did very well with one hour on July 1 so we went for 2 hours the next day. On the third day, I decided (as we had in the past) to let him go as long as he could go. That day, he did 4 hours and 8 the day after that. The remarkable thing here was that he was pulling in very healthy volumes and showing zero signs of fatigue. We kept going and he did 8 hours a day for a month and by August, he was doing the wean for about 12 hours a day, or his entire wakeful period. Tyson had never done this before! He was showing strength, endurance, and such a calm steadiness as he worked so hard each day. I couldn’t believe what I was seeing and sent a handful of videos of his vent (which told the story of his weaning) to his respiratory therapist to make sure I wasn’t missing anything or to make sure I was witnessing what I thought I was. He laughed and cheered Tyson on and said, “Yep! That’s Tyson doing the work! Keep it up!” Each day, Tyson seemed stronger and more in control. It’s important, I think, to temper this with the fact that we did have to increase the pressure support because he had lost a pretty good deal of strength, therefore the vent was helping him out a bunch, but the fact remained that he was getting stronger and regardless of how much help the vent was providing, HE was the one initiating each inhalation and exhalation. This was still a huge victory for him. I credit this to the on-going stem cell therapy, the physical therapy he’s been receiving, and Tyson’s pure will and determination. One thing that’s always been a constant in Tyson’s journey is that no matter how hard he gets knocked down, he always, always, always finds a way to fight back. Being able to do so truly makes his story so unique and is at the absolute core of our belief and faith. He stayed at a pressure support of 15 for two months and because his volumes were so great and because he was exhibiting such solid endurance, I lowered the pressure support to 12. He did great with this setting for several weeks, too. There is SO much involved in weaning him off the vent completely and this is just a small, albeit significant part of it, but eventually lowering the pressure support to 5 is our goal.
We experienced one hiccup during this 12-16 week period. At the end of July, I noticed Tyson was considerably more tired than usual and that his sputum (sorry, that’s gross- it’s basically the mucus that is suctioned from his lower airways) was very thick and opaque. He also began to run a slight fever and had an elevated heart rate, plus, his vent numbers were also telling me that he was dealing with some blockage in his lungs (I could tell he needed to cough but I wasn’t having any luck helping him resolve this on my own.) I happened to have a sputum culture vent/circuit attachment in our stash of supplies and with the help of our RT and our nurse, gathered a sample and had it sent to the lab. The results of this test detected a drug-resistant bacteria in his lungs. On the surface, that sounds quite scary, however given Tyson’s physical condition (essentially paralyzed), this wasn’t a total surprise. Things can gather and settle in his lungs more easily because he is so immobile. The scary part however, was looking at the short list of meds that were effective treatments against this particular bacteria and realizing the one that was best for him was an IV med that is almost exclusively administered in a hospital setting because it’s given intravenously and because they have to closely monitor the patient’s response to it. The name of the bacteria seemed really familiar to me. I had seen it before and remembered last spring when Tyson was in the ICU, they had found a drug resistant bacteria with the same name. I remembered, too, that the doctors in the hospital went through a few meds before finding one that was effective and so, I had taken a picture back then of the one that worked, just in case I shared this with our doctor and knowing that Tyson had tried it before with no significant reaction and because I am trained in administering IV’s through his PICC line, we were able to justify treating him at home rather than in the hospital which was a major victory in my mind.
Remember when I said my nerves were shot? This is an example of what I meant by that; trying to stay focused and calm so that I can help carry Tyson through this ordeal while not falling apart because when I look at him struggling, I am so scared he might die. For the few occasions where he has spiked a fever or has shown any signs of complications, it gets very scary, very quickly. My mind races, worrying about what could be happening to him beneath the surface while I try to focus on the facts that are immediately in front of me, reach out to the doctor and nurse for guidance and help him feel better as quickly as humanly possible. I think of what must be going through his mind. His nerves are probably BEYOND shot compared to mine. I know that he looks to me as his flight attendant; if I’m calm and steady, he can relax and know that he’s going to be okay. So many times, I have hyped Tyson up during the really challenging, scary moments and then left his room to go sob like a baby in my bedroom. It probably sounds crazy to go back and forth between feeling so ridiculously confident that Tyson is going to just bust through every obstacle and be completely fine in the end, no worries!…to oh, my god- what if he dies? But that’s the honest struggle sometimes. He is the strongest person I’ve ever known and someday, there will be a movie about his story. He is just absolutely remarkable. The fact is- he is also in a very precarious health condition and there are things we simply cannot control or predict and that is scary.
Moving along- by October, I was finally able to schedule a telehealth appointment with the pulmonologist who came highly recommended by our respiratory therapist. My only requirement was that he just be open to the possibilities. We do not have time to waste on anyone who wants to tell us to “get comfortable” or express limitations on what they think will happen with Tyson. We hit the jackpot- this new doctor is an absolute angel. He started by asking me what our goals were. I told him we wanted to get Tyson weaned off the ventilator. We discussed his Lyme and ALS diagnosis and the stem cell protocol. I cited several examples of how Tyson had lost strength and then regained it. I asked that we let Tyson (and the power of the stem cell treatment) dictate what we do. He said, “absolutely”. He asked me to explain what our approach to his vent weaning had looked like and I told him our process: I look for days when he’s alert and looking good, put him on the wean and leave him on for as long as he can tolerate before showing visible signs of fatigue or over exertion. I told him that I lowered the pressure support to 12 and he was doing great for several weeks with that but lately seemed tired. What he said next was so poignant to hear in that moment: he explained that weaning from the ventilator is extremely difficult (which I knew because Tyson had said as much in the early days) and to think of his lungs as being in a cast for over five years. He said “imagine your leg was in a cast for that long and you tried to get up and walk. Your leg would feel like a noodle and you’d fall flat on your face.”. He said, “We need to approach this as marathon training for Tyson, including one day off a week, incorporating cross-training, proper nutrition, and taking it slow.” He said our focus now is building muscle memory. Tyson’s brain needs to actually remember how to breathe since he’s handed over that job to this machine for so many years. He also told me that we don’t know what will happen with Tyson. Time will tell. But one amazing factor to remind ourselves of is that Tyson’s lungs are healthy, meaning if he were to pass away, anyone in need would be grateful to have his lungs. The fact that we are not dealing with diseased lungs is a major bonus. By the end of the call, he put us on a weaning schedule. He had Tyson start with three sessions a day for one week at 30 minutes per session. Each week, we add 30 minutes until we’ve reached three sessions that are three hours long each for one week. After that, we lower the pressure support by one, to 14. I had been lowering the support too drastically which was tiring him out in the long run.
Guys- Tyson is doing it. He has just started his last week at the 15 pressure support. On Friday, we lower to 14 for six weeks and then start all over at 13 pressure support for another six weeks. Having this level of care from this doc and a routine like this has calmed both of our nerves and Tyson is really responding to the structure of the schedule. The boys and I cheer him on as usual and it’s been so great.
We check Tyson’s Lyme disease once a year through Igenex Labs. It’s important to do this to gauge whether or not his antibiotic and supplement regimen is effective at killing the bacteria on a level that we might not be able to see yet. He has been on Disulfiram since August 2019 but after we reached the max dose for his weight, we cut down drastically to a quarter of a dose, every other day and have found it to be effective. He couldn’t tolerate the larger doses and that’s okay. What was interesting about the lab results was that it showed a recent infection of Lyme Disease as well as Bartonella. Tyson certainly hasn’t been bitten by a tick while lying in a hospital bed in his bedroom so my understanding of what this means is that the Disulfiram is likely busting through the biofilms that are protecting the Lyme bacteria, subsequently releasing the bacteria into the system, making it seem as though there’s a brand new infection. Some of what might have been released is Bartonella which he had tested negative for several times in the past. Tyson’s continuing his Lyme antibiotic protocol paired with lots of vitamins and supplements for mitochondrial support which will support his weaning efforts.
Calvin and Abren adjusted nicely to remote learning thanks to their remarkable teachers who worked so hard to keep all of the students smiling and feeling good during such an extraordinary time. My parents were happy to reprise their roles as elementary school educators and help me with the classwork and I, for one was very happy to be in charge of their physical education lessons 🙂 We did a lot of one-on-one basketball, took some grounders on the back lawn, and I even snuck in a few field hockey lessons with the boys. After a few weeks of home learning, the teachers put on a parade through our town so that they could wave and see each of the students. We decorated the driveway with chalk designs for the occasion 🙂
In June, Abren turned six and graduated Kindergarten. Again, the teachers, the school, and the town went above and beyond and hosted the sweetest drive-thru graduation complete with firetrucks, police cars, and lots of horn honking. Abren felt like royalty as he waved out of the sun roof to the firemen and police officers. This was absolutely something he will remember for a really long time.
By mid-summer, Cal was finally able to join his buddies and play catch, ride bikes, and play basketball with them. They’re all such sweet kids and we’re really grateful for the nice community we’ve found ourselves in ❤️ Our summer was very special, too because of the wonderful friendship we’ve developed with our next door neighbors. They had quarantined all spring and summer just like us so the kids were able to swim and play together. They also took the boys along with them on several bike rides over the summer. They started out just riding around town for a couple of miles and then worked up to 10 miles and by the end of the summer, they were doing 22-25 mile rides! I packed lunches for Cal and Abe, slapped some sunscreen on them, and off they went! The boys would come home with the biggest smiles on their faces and so eager to tell me and Tyson about all of the fun they had. I am so grateful for our neighbor’s kindness because this is just a perfect example of something Tyson and I WISH we could do with our boys but we simply can’t. They’re helping our boys have these experiences they would otherwise miss out on and they’ve been so wonderful to us. We are so lucky!
When it came time to prepare for the new school year, our district offered full remote learning (coinciding with their respective classrooms) which is what we chose. After roughly six months apart from their classmates and friends, I was very anxious and sad as I explained to the kids that they couldn’t return to the classroom and instead, would have to be home full time. I worried this decision would crush them but both of them promptly replied that they understood and that it was important to keep daddy safe and healthy. They FaceTime with their teachers and classmates in the morning and do their schoolwork throughout the day. Cal sits with Tyson to read chapters from whichever book he’s currently reading for class and Abren is starting to do the same. I’m so proud of them. They continue to work hard in their classes and to be honest, I cannot imagine trying to figure out a laptop, uploading documents, etc. at the age of 9 like Cal. I’m so impressed. I really believe we will look back on this extraordinary time and see so many ways we were stretched to grow!
Calvin and Abren both share tender moments with Tyson every day. They come into his room, give him hugs, and say “good morning” when he wakes up. Abren plays music for him throughout the day and quite honestly, Tyson’s room has become Calvin’s favorite hang-out in the house. I love hearing him talk his ear off about football while I’m in the kitchen cooking dinner. I remind them how much it means to their dad to have them in there with him, spending time and just being together, but they already know. When I sit Tyson up in bed, I invite the kids in to give him huge wrap-around hugs because it’s difficult to hug Tyson when he’s lying in bed. We smother him with love all day long and I really think it’s the best medicine. A couple of weeks ago, we were all in Tyson’s room together in the morning while I was getting Tyson cleaned up and ready for the day. I had just sat him up to put a new t-shirt on him and after laying him back down, I noticed his shirt was completely wet. I quickly realized that his feeding tube had popped out, which by the way is totally normal. The balloon inside his belly becomes deflated over time and the whole thing just comes out. Gross, sorry. Anyway, I calmly said, “ooh whoops, dad’s belly tube is out.”. I looked at Abren who sort of resembled a deer in headlights (he couldn’t actually see anything of what was going on except Tyson’s wet shirt, but he was still shocked) and before I could formulate any other words, Calvin gently put his arm around Abren’s shoulders and “Okay, buddy, let’s go out to the living room so mommy can take care of daddy” and ushered him out of the room, closing the door behind them. I then was able to mask up, glove up, and get Tyson cleaned and carefully inserted a new tube. In total, it took me about five minutes and when I was done, I went out to the living room to tell both of the boys how proud I was of their behavior, but specifically pulled Calvin aside to truly acknowledge just how amazing he was in that moment. I told him that many adults in that situation wouldn’t have had the presence of mind to keep composed like that and to think of protecting Abren. I told him how I freaked I was the first time Tyson’s tube came out. He gave me a little smirk and said, “no problem, mom!” Another day last week, we randomly had an enormous bee in the house! Abren’s FIRST instinct was to run and shut Tyson’s bedroom door! I was in the kitchen dealing with the bee and asked him what he was doing and he said, “I have to shut daddy’s door so the bee doesn’t go in there and sting him!” I mean..wow! They’re both such sweet kiddos.
So, you know what? We are all okay here. As you can imagine, it is tempting to feel overwhelmed with sadness, worry, grief, and fear if we sit too long thinking about this heavy load Tyson is carrying. H O W E V E R- we know it won’t do us any good to dwell on those things for too long. Instead rather, we try to stay focused (or return to focus) on all of the incredible things we have going for us. He is weaning! That’s virtually unheard of for someone in his condition. He is staying healthy and we are still proactive in keeping him protected from Covid. We have world-renowned doctors on our team who are extremely passionate and dedicated to helping Tyson. We are continuing his stem cell therapy which we worked for two years to get FDA approval for and these cells are doing their work to help strengthen all of his muscles. We do physical therapy every day and he works so hard. He has a will to live that is beyond belief and he knows we are right there with him. Our boys are healthy and happy and we have so much love in this house. I know Tyson feels that. And we have you all. ❤ I don’t know how to explain how we have managed to find a way to enjoy life so much here while at the same time, feel so incomplete and so heart broken without Tyson’s full presence. But I’ll count that as a positive for sure. He will be laughing and holding us all soon enough!
Thank you again for your patience over these past twelve months and for your continued support. Please keep Tyson in your prayers. Please pray that he continues to get stronger in both body and mind to overcome this.