Friends and Family:
I have to start this update out by thanking you all for your continued support. This is clearly the most challenging obstacle Tyson, the boys, and I have ever faced and I can appreciate the helplessness you might feel as a friend or family member looking in. And while Tyson continues to fight every minute of his life with us by his side, I know that we’re all collectively grieving for the extremely kind, sweet, loving, hilarious, hardworking, down-to-earth Tyson who gives the biggest hugs and fills every room with absolute joy. Please know that he is STILL in there and your prayers and support mean the absolute word to him and to us. In that spirit, the incredible people at Kendra Scott have reached out to us, wanting to support his recovery with a Kendra Gives Back philanthropy event in Tyson’s honor. The event will be virtual and will run from December 9th to the 11th. I’ll provide more details soon and I am hoping our friends and family far and wide might share so that we can continue to support Tyson’s long road ahead. ❤
I’ve said this before: healing is not linear. Never has that been more evident than over the past several months. June and July were spent just the way we like it; Tyson steadily worked on his weaning and made progress each week and the boys settled into their summer vacation filled with baseball, bike rides, playing with their friends, and lots of swimming. At the end of July, we scheduled to have Tyson’s PICC line removed from his arm and have a new one placed in his other arm. These devices can wear down over time and occasionally lose their function so this is really a routine procedure that we’re meant to do annually, but with the circumstances surrounding the pandemic, it would’ve been a greater risk to bring him to a hospital for the procedure than it would’ve been to wait and change it at a safer time. At the appointment, when the radiologists attempted to remove the PICC, they quickly found that it would not budge at all. They explained to us that if they continued to try to pull it out, it could dismantle inside his body and cause and fatal emboli so they instructed us to go home and ask our doctor to schedule to have a vascular surgeon surgically remove it. This was frustrating a little bit but of course we’d rather be cautious than rush anything. They were, however, able to insert a new PICC line in his other arm like we planned, so in that respect, it was a successful trip to the hospital.
Tyson was set up to meet with the interventional radiologist at Upstate Hospital ten days later in the beginning of August. Knowing we’d be in the radiology department anyway for this procedure, I thought it wouldn’t hurt to ask for the brain MRI we’ve been wanting for Tyson for so long. The reason we need an MRI (and other brain scans), in my opinion, is to establish a baseline to use for comparison, to measure any improvements, and to also give us a clearer picture of what injuries he was likely suffering from since the cardiac arrest a few years ago. Baselines are established all the time and this is no different. If this seems like something that should’ve been done right after the cardiac arrest, I completely agree. However, back then, no one thought it would be worth it to run them because they didn’t anticipate he would live much longer (it’s been eight years…) and as I mentioned in my last update, those feelings were shared by the neurologist we visited back in April. Because our Primary Care doc is awesome and supports us completely, he fought and was able to set something up for us at the last minute. Ideally, we want an MRI with and without contrast and a SPECT scan but the radiology department could only accommodate a regular MRI without contrast, so we were very grateful for that. The plan is to go back next summer for repeat scans as well as some of the more in-depth scans I mentioned.
We had the MRI done first. It took all of 15 minutes. We transferred Tyson to a stretcher and the hospital switched him over to an MRI compatible ventilator. It was very quick.
The procedure to remove the PICC went very smoothly as well. Tyson’s brother, Dontay, accompanied us to the hospital which was so necessary and I am really appreciative of his help. Carrying his equipment and physically helping me move Tyson is helpful but maybe even more valuable than that was having his company and sharing some laughs to lighten the mood. We ended up waiting in the surgery prep room for a few hours and in that time, we chatted off and on to pass the time. I looked over at Tyson and he was sleeping so peacefully to the sounds of our voices. I know having both of us there comforted him a great deal.
Before rolling him into surgery, the doctors explained the process (they’d be making an incision at his neck so that they could guide the PICC wire safely out of his body), the possible complications that could arise and so forth. It’s never easy for me when I cannot be with Tyson. I hate it. But I had complete faith in the doctors and nurses (one of whom was my sister’s best friend from high school!). I gave Tyson a big hug and a kiss and told him we’d be waiting nearby for him when he’s done. About a half hour later, they called me from the waiting room to tell me they ended up not having to surgically remove it; the surgeon used some incredible technique and wiggled it free, leaving Tyson virtually unscathed. I was both thrilled and relieved to hear this.
The results of the MRI were posted to Tyson’s online medical file at around 11pm that evening. I quickly opened the file and tried to decipher all of the medical jargon which was nearly impossible. In between googling terms like, “strabismus” and “ethmoid”, I sent over a copy of the report to Dr. Shroff. She called me a few minutes later. It was clear that she could hear the panic and fear in my voice and said, “Dear, get off the internet and let me explain what all of this means”.
I should preface this next part by saying two things: one- I really should have prepared myself for these findings. I was just so excited that we were getting the tests done, I didn’t allow a moment to fully ready myself mentally for it, and two- if i’m being honest, I already knew just about everything that the MRI was about to reveal. I had just never seen it on paper in such stern, black and white medical terms. That part was excruciating.
So the first observation was “severe frontotemporal cerebral atrophy, central cerebral atrophy, brain stem atrophy, and spinal cord atrophy.” The next of the findings listed was “ethmoid and sphenoid sinusitis”, and then finally, “muscular atrophy in the visualized portions”, and “strabismus”. That’s an awful lot to unpack. Dr. Shroff first agreed that for the most part, these were all things we knew: his brain had obviously suffered tremendous atrophy from the 35 minute cardiac arrest in 2015, during which, his heart stopped completely, no longer delivering oxygen to his brain, not to mention the cerebral damage that was caused by the Lyme disease prior to the cardiac arrest. Next, the brain stem and spinal cord atrophy, again related to the cardiac arrest and specific to only the portion of the two that were visible in the scan. The ethmoid and sphenoid sinusitis refers to the two sinuses which are carefully situated at the root of the nose near the eyes and the skull. An infection here, if left untreated, can cause serious complications, as you might imagine. Lastly, the “muscular atrophy in the visualized portions” and the “strabismus”- that’s all referring to his eye muscles which are very weak.
The fact of the matter is that Tyson is able to wean which signifies that enough of his brain that is required to control the breathing function does, in fact work, despite the atrophy. And the fact that he’s improving, even with countless setbacks, shows that those brain signals and muscles are improving. If we had brain scans done right after the cardiac arrest, the findings/brain activity would’ve likely been negligible.
The other thing we noticed was that the scan showed no infarct (dead tissue), no clots, and no cysts. These were all great takeaways against the horror of the rest of the results. The brain is a muscle and I’m recalling how atrophied Tyson’s calf muscles, forearm muscles, and bicep muscles were at the start of the stem cell therapy compared to how healthy they look and feel now. The stem cells will help his atrophied brain and we can see the function is there, as evident by the weaning. Although the atrophy has improved in his legs and arms, the function is not yet there because the crisis in his body is in his brain, lungs, and heart and that is where the stem cells direct their attention to first. The same will be the case for his brain; the atrophy will improve and more function will follow in due time.
Anyway, we immediately treated the huge sinus infection with some antibiotics. I also researched natural ways to keep the sinuses clear and healthy with gentle facial massage and positioning and I make sure to incorporate these two things into our daily routine. We will continue to address the weakness in his eyes by working with his new Dynavox eye-tracking device. Just asking Tyson to move his eyes up and down to answer simple YES or NO questions is a workout for him and one which he can benefit from with daily practice.
For his overall brain atrophy, the stem cells will shoulder most of the work load and that repair and regeneration will take a very long time. There are so many things we can do in the meantime to help his healing process. One critical way we can help him is with constant brain stimulation. This means keeping Tyson’s brain busy with books (on Audible or better yet, read to by myself or the kids), playing music (spiritual stuff, classics from his youth, songs we listened to together on our car rides, and most recently, a playlist of songs he and his design team listened to in the Ralph Lauren showrooms), listening to baseball, football, or golf on the t.v., and just general conversation. I’ve told Calvin before how wonderful it is that he talks to Tyson all the time because it helps Tyson’s heart and soul and now, I’ve shared with him just how significant his time with his dad is on a medical level. It makes Calvin and Abren both feel like they’re a part of his healing which has always been a priority of mine since the beginning. I want them to know just how much they are needed by him and that their energy and love is unquestionably helping their sweet dad. ❤ Receiving these results was terribly painful but it has opened my eyes to a whole host of other ways we could possibly be helping Tyson. For example, I would love to connect with a physician I’ve found who has done extensive research on healing the brain after traumatic brain injury. This is on my short-term wish list for Tyson.
After digesting all of this information from his report, I found myself in a foggy, inconsolable state for about a week. I felt overwhelmingly sad and such an intense anger for Tyson. For some reason, I had momentarily disregarded ALL of the positives that exist with his ability to wean and solely focused on a sinking feeling that he was slowly slipping away. I texted Dr. Shroff and said, “Please tell me to snap out of it.” She wrote back, “hey! snap out of it! He’s going to be fine.” ha ha She reminded me that we got what we came for- a BASELINE- and now we get back to work! Hearing this reminder, I could feel the shift instantly.
One thing I have always tried to do was focus on the things within our control, since sadly, so much is not. After his antibiotic for the sinus issue, we resumed the weaning program that we were force to sideline for a week or so while he recovered. He was at an 8 pressure support at the end of August (this means the vent is doing very little and Tyson is initiating the inhalation and exhalation of each breath), doing three sessions each day of three hours each. This was the BEST he’s done since 2015 and what’s more, on September 1st, I recorded that his heart rate was in the 60’s during his weans which signaled just how calmly and naturally he was breathing on his own. For context, his heart rate normally runs into the 90’s-100’s which is totally fine, just shows he’s working really hard. This was so encouraging to see and must have felt amazing for Tyson, too.
A couple of days later, I put Tyson on the wean as I normally do and he was unable to sustain anything at all. Clearly something was bothering him or he just needed rest, so I gave him the day off. The next day, the same thing happened. I have to respect his body when it’s telling us he needs to rest. I continued to check in with him each day to see if he was up for the wean or not. After a week’s worth of rest, I began to see some symptoms indicating he had a cold or some sort of respiratory infection. A culture confirmed it; it’s possible that his nasal/sinus infection traveled down into his lungs or it could have just been a brand new infection. Doesn’t matter, really. So for this, he needed to be treated with two antibiotics- one 7 day course of a pill I could easily crush and send through his feeding tube and one IV antibiotic that needed to be administered every six hours for 30 minutes. Once he was finished with both courses of treatment (plus a couple of extra days off), we attempted to resume the wean. I bumped the pressure support from an 8 up to a 10 because he had taken a month off while he was sick. He struggled the first day and only did a few 15 minute sessions but the following day, he was strong right from the start and was able to do three 2.5 hour sessions. This progress continued for a couple of weeks.
Right now, his progress is fluctuating. He weaned beautifully this past week and yet, he has been unable to for the past three days. He’s allowed to have “off” days like the rest of us, so I stay vigilant, taking notes daily to keep track of any other changes just to make sure he’s okay. Over the past month or so, his resting heart rate has dropped about 20 points and his new normal is 50’s-60’s, whereas before, it was always 70’s-90’s and 100’s while weaning. Now when he weans, it’s in the 60’s. Generally this could be described as a good thing, but it’s a change that we’re all monitoring.
He’s also in the midst of a new protocol designed by our incredible Lyme doc using Methylene Blue and Dapsone to hit the Bartonella that was discovered in his system last year. Bartonella is a species that is often carried by ticks and can cause central nervous system disfunction, swollen lymph nodes, fatigue, and complications affecting the brain and eyes, among other things. This bacteria is pretty stealth, as it is generally able to avoid antibiotics. You might remember that Tyson recently wrapped up a trial for the persistent Lyme bacteria using Disulfiram, an antabuse medication that was found to be a powerful biofilm buster. Biofilm is the sticky substance that surrounds Lyme bacteria, making it nearly impossible for antibiotics to penetrate and kill the bacteria. Disulfiram worked to break this biofilm up, releasing the Lyme and Bartonella. It’s important to remember with Lyme that any co-infections that are discovered must generally have their own treatment plans. The Methylene Blue and Dapsone, along with Rifampin, Doxy, and Zithro, will address this particular Bartonella infection. When he was properly tested for Lyme by IGenex Labs in 2012, Bartonella wasn’t one of the co-infections that showed up. It did show up, however, nearly a decade later after over a year of the Disulfiram protocol. Amazing, isn’t it?
So let me wrap this up and my apologies if I’ve droned on. We’re going to run some labs this week to see if he’s got another infection brewing in his lungs or elsewhere. Once we determine that he’s on solid ground, we can try weaning again. Getting him off the vent remains our primary goal at the moment. I will continue doing physical and occupational therapy with him daily. he will continue his speech therapy, working on the eye tracking device so that he can hopefully communicate with me for the first time in five years. We will of course continue the stem cell therapy, the supplements, the medications, the juices and smoothies I make for him, the lymphatic massages, etc. All of those wonderfully supportive things will continue. Patience is critical. Faith is critical. Staying healthy is critical. If we can maintain these three pillars, Tyson will soar.
I believe in Tyson’s recovery and the body’s ability to heal itself with the proper support. I am constantly researching new ways to help Tyson. We’ve been fortunate over the past decade to have aligned ourselves with arguably the top physicians in their respective fields who have customized personal treatment plans for Tyson. Where other doctors have instructed us to “get comfortable” and “accept his terminal diagnosis”, our doctors persevered and have allowed Tyson to guide them. They are relentless and their dedication to Tyson’s healing is just astounding.
Tyson is working so hard on his recovery, as you know, and I am supporting him with every fiber of my being. The reality is that there is just so much that is not covered by insurance and because of that, we are severely limited with what we can obtain for him and I am convinced that there are plenty of things we can still do to help him. Funds raised would transform our wish-list into a to-do list: I’d like to get physical therapy back in the home, especially when we receive the standing frame for Tyson. As I mentioned before, I’d like to enlist the help of a brain injury specialist to see how their programs can complement his current regimen. Funds raised would help pay for the phone consultations and subsequent treatment plans as well as current doctor consultations and cost of medications. I’d like to buy Tyson a red-light/infared device which can help with brain injury and inflammation. And most importantly, funds raised would help us cover costs associated with importing our next round of stem cells that he’s due to receive.
We would not be where we are now, a decade after being told he’s only got a few months to live, if it were not for the generous love and support from all of our friends and family. Please continue to pray for Tyson’s strength to continue this fight, for the doctors, nurses, and therapists who all work so hard for him, and for myself and the boys to maintain our strength as well. Thank you from the bottom of our hearts for being a significant part of our journey.
(here are two cute photos of the boys spending time with Tyson 🙂 )
Sending holiday cheer and all our love,
Ann & Tyson