Happy November, family and friends-
It admittedly feels a little silly that it’s taken me this long to write an update on Tyson. The past several months have flown by; we’ve stayed very busy, keeping the kids active and happy, we’ve worked on Tyson’s recovery day in and day out, and continued moving forward the best way we know how. Still, it’s been wildly exhausting (both physically and emotionally) for all of us. Very often, just as I sit down to write, I am immediately pulled to one obligation or another. I’m sure so many of you can relate! Anyhow, I appreciate your patience and the well wishes and prayers that you’ve continually sent our way. Thank you. We are doing okay and I’ve found some pockets of time in the day to write since we are well into a routine for the school year for the boys. Since the last update in May, Tyson has continued to recover very well from the blood clots in his lungs. I will start by sharing a little bit about what brought us to the hospital that night in April, what we experienced at the hospital during our 2 wk stay, and some other highlights from the past several months. I also want to help direct anyone new to Tyson’s story to take a look at two blog specific entry dates: March 2015 and January 2018. These two reads will offer significant information and help establish a backdrop to his story so that this update makes sense.
So, around 6pm on April 23, I noticed Tyson looking fatigued. Sounds simple enough to spot, but for Tyson, fatigue is a significant part of his set of Lyme symptoms which is to say he looks and acts fatigued just about every day, so deciphering differences in his level of exhaustion isn’t easy. Is he having a Lyme relapse? Did he not sleep well last night? Is he just tired? The difference this time was that he had a little bit of a panicked look about him and his color looked “off” to me. I checked his oxygen and heart rate with the pulse oximeter right away and then I joined him with a panicked look myself. His oxygen saturation was 65 (it’s supposed to be 97-100) and his heart rate was elevated at 132 (his usually runs high at around 112). Obviously this was telling me that something was blocking his breathing somehow and he that he was struggling. So, as calmly as I could, I went through the protocol that I was trained on to help fix the issue; I checked his vent tubing/circuit, I suctioned him, I sat him up and gave light percussion on his back and suctioned again. His oxygen went from 65 to 75. Better, but still dangerously low. His ventilator was telling me that everything was perfectly fine; his volumes were perfect, his breath rate was normal. I messaged our angel of a respiratory therapist and explained to her what was going on. After several attempts to help him at home, I called 911. My parents were both at the house because it was the boys’ first day of little league and they were taking care of shuttling them to and from practices so, when I knew it was time to head to the hospital, I had them take the boys to my mom’s for the night. As we packed an over night bag for each of them, Calvin knew something was up so I carefully explained to him that I had to have a doctor look at daddy and that we’d be home soon. I told him that I thought maybe dad had a cold (honestly, this is what I was thinking at the time) and I knew Cal would understand it in those terms. Even still, he cried so hard as I hugged him. I reassured him that his dad would be okay and brought him into Tyson’s room so he could give him a huge hug and a kiss before they left and before the ambulance arrived. Abren is still young and isn’t fully capable yet of understanding Tyson’s condition; he was upset that the four of us were going separate ways but was eventually okay with everything as I explained we’d see them soon.
The ambulance arrived and the Sherrill/Kenwood Volunteer FD and EMT’s were remarkable. They all filed into Tyson’s room, swiftly and calmly. I explained that he was having trouble maintaining his oxygen levels. My heart was racing at this point and I fought off tears and a total breakdown as they worked on Tyson because by this point, he was struggling considerably. They hooked him up to oxygen through his ventilator and then transferred him to the stretcher and then into the ambulance. I requested that, if possible and if his circumstances permitted, we be taken to Upstate University hospital in Syracuse because of Tyson’s complex condition/needs, etc. However, they were unable to maintain his oxygen at a safe level so we instead drove the 2 miles to the closest hospital which was Oneida Hospital to get him stabilized first. The doctors and nurses in the ER were so wonderful to us. When I explained Tyson’s condition and that he has Lyme disease, no one looked at me like I was crazy, which was a nice change of pace. Instead, they collectively responded with comments like “I know someone with Lyme and it’s such a terrible disease”, or “I knew Lyme was bad, but I didn’t know it could do this!”, and they wanted to know more about the disease and that made me hopeful. They ran tests right away and discovered a large clot in one lung and several clots in both. They also thought they saw traces of pneumonia but said they’d look into that in detail later on, as it was not a priority at the moment. Once they stabilized Tyson, they arranged the transport to the ICU at Upstate for the very reasons I mentioned above.
We arrived around 3 am to the Respiratory ICU. The intake process went well. I answered a million questions, gave his list of meds and explained his diagnosis while they worked to get him switched to the hospital ventilator and get him comfortable so he could finally rest. He was so exhausted. The ICU team here was phenomenal, too. There must have been about 7 or eight people in the room helping to get Tyson settled. They were all very gentle and considerate. They even brought in a cot for me to sleep on!
The following morning, they did some more tests to confirm what the ER drs had found. They were also curious, of course, about the cause of the clots. They explained that Tyson had navigated his way through yet another very scary and very serious situation that could have been fatal. They seemed shocked. I, however, am used to Tyson’s magic. 🙂 They took an ultrasound of his PICC and found some clots surrounding it so they ordered to have it removed immediately and then installed a new one in his right arm. They eventually concluded that the clots around the PICC were dangerous but not the root cause. They placed him on blood thinners and began treatment for the bacterial pneumonia. The doctor changed Tyson’s vent settings (increased his tidal volume and breath rate) to help him rest and recover from the incident. I was feeling very relieved to see all of these wonderful things happening for Tyson and was calm, knowing we were in one of the best hospitals in the state.
Being out of our little bubble proved, at times, to be mentally and emotionally challenging. When we are home, WE can control the narrative about our journey and we control the positive atmosphere. We laugh, play music, joke around and stay as up-beat as possible. We have family time in Tyson’s bedroom every day to watch baseball, football, or golf and just shower him with love and encouragement constantly. It’s tough being out in the “real world” where people haven’t seen what we’ve been through and what he’s overcome, not to mention all of the ways he has blatantly defied what has been expected of him for the past 9 years and sometimes it feels very isolating. So when the team of doctors and nurses crowded into his room during rounds and explained to me with a very somber tone just how narrowly he made his way through this blood clot ordeal and how I should be realistic and manage my expectations, it was really tough to hear. I held Tyson’s hand and reminded him how insanely strong he was no matter what. Although he can’t talk to me, he comforts me in moments like this nonetheless. Don’t get me wrong, the staff at the hospital was absolutely incredible and I don’t fault them at all and I do feel like it’s natural for nurses, doctors, case managers, etc. to look at us with sad eyes and pity and treat Tyson like he’s dying. It’s okay because we know people generally mean well and while we are used to this life, for others, it’s shocking to see us managing. I think seeing their shock sort of rattles me a little bit and I just never want that to spill over to Tyson. Having said that, all of the nurses and doctors at Upstate were incredibly compassionate and actually *heard* us rather than dismiss us.
As I mentioned before, they also changed out his trach while we were there. What I didn’t know is that by having the same style and size trach for four years, there was a tremendous amount of pressure being applied to his carotid artery which could be extremely dangerous, and if aggravated enough, fatal. So, with the new silicone trach, there is significantly less pressure and that area is able to heal a bit. We eventually were able to swap his hospital vent out for his own personal vent which was a big step toward being allowed to be discharged.
I feel like part of the package of a hospital visit for us is to have something peculiar come up that stumps the doctors for a few days and then sorts itself out. This visit was no different. We had little hiccups with his labs and then with his blood pressure, and then with his temperature, but it all returned to normal in a week’s time. All in all, the hospital stay was great, as crazy as that sounds. We got Tyson all fixed up, I trained with the respiratory therapists and nurses all week and Tyson returned home stable and ready for a huge nap.
Reuniting with the boys at home on May 3 was so spectacular. They were wonderfully taken care of, went to school, continued on with their baseball season, they even went to the movies with Katherine and Vanessa who drove all the way up from Greenwich to spend time with them. Tyson’s friend Matt joined them for a day, too! Thank God for friends and family. ❤ I coordinated our discharge so that we would be home in time for me to see them off the bus at 3:30 (and again, to avoid having them see the ambulance) and it worked out beautifully. They both tackled me in the driveway with hugs and tears and then pounced on Tyson, too. ❤
The nurse case manager who had been assigned to us at the hospital and who had been in her position for 30+ years was in tears when she learned about what happened to Tyson- the Lyme disease, the endless search for treatment and help, our two boys, and me as the sole caregiver. She asked me which nursing agency we had at home and when I told her we didn’t have one, she asked (rather, pleaded) if she could help set one up. I explained that in the past, many of the services we had been told that would be offered, were already taken care of by other agencies (vent/IV companies) and the other nominal services that would be offered were not necessary (I.e. an aide). I told her that we would be open to looking into this, but remained firm we didn’t want people or groups to come into our home and rock the boat, so to speak. I mentioned that it was really important that our home life not be disturbed, as we have two young boys who are naturally very sensitive to all of this. She assured me that it all parties involved would be sensitive to our home life and set of circumstances.
Once we were home, I met with a nurse case manager assigned to us to discuss Tyson’s condition and his needs. I explained to her that thing we needed the most, as many of you know by now, is on-going physical therapy. By nature, I like to think that I’m an optimist but in this case, I wasn’t expecting any help from any group to get Tyson his therapies because of his diagnosis (he requires skilled nursing which is my role and as we’ve found, is both hard to come by and not covered for long periods of time) and because historically, we have been told “no”. I was very pleasantly surprised when they were able to set up physical, occupational, and speech therapy visits! I think this was a direct result of his hospitalization which goes to show you that some good can come from difficult times. For the entire summer, we had therapy every single day, Monday through Friday. During that time, our whole mood shifted from feeling slightly scared, helpless, and weak (having just come from a scary experience w/ the clots) to “look how great Tyson looks!”. The therapists assigned to Tyson are all so smart, eager, and committed to help which is honestly, the absolute dream combination and exactly what I prayed we would somehow find.
One of the areas we have been focusing on are his jaw muscles so that he can open his mouth. After his cardiac arrest in 2015 when his heart stopped for 35 minutes, his mouth was seemingly locked shut when he woke up. I never fully understood why this happened but I suppose it’s just like the other muscles in his body that just stopped working temporarily. The speech therapists have been massaging his jaw and there have been some really notable improvements. Before they began working with Tyson, I showed them that I could only fit my finger just past his front teeth, not even close to reaching the back molars. This is problematic for a million reasons as you can imagine. Now, I can reach each tooth from just about every angle. And because his mouth is opening more, we can physically reach in and press down on his jaw, helping to open it up gradually over time. This is huge.
The occupational and physical therapists are working on increasing his range of motion for his arms and legs, working in specific neuro patterns that mimic a normal gait and arm movement. You can feel Tyson’s muscles contract or help out in trace amounts but even if these are “passive” moves on his part, he will still benefit tremendously from them because his brain and memory functions are being engaged. They’ve discussed the importance of implementing percussive therapy to help with the range of motion and to find muscle contractions that are in the shallow depths of his muscles (hiding out for all this time) and reactivate them. With this method, they have been able to find *tiny* contractions in his biceps and the in the palms of his hands. The key now, is to continue to work on it so the contraction becomes stronger. We have also noticed Tyson’s muscles feeling very supple as opposed to feeling rigid and stiff which is common for ALS patients. This is due to the stem cells and the therapy working together and it signals to us that there is muscle regeneration. His joints in his shoulders, knees, and wrists used to click during movements but that has all stopped now, too. So, even on the darkest days, we need to remember these things because it is evidence that Tyson’s body is able to recover. ❤
Kind of skipping around a bit here, but I want to go back to January for a moment. January 1, Tyson made the commitment to wean every single day, even if it was just for a few minutes. Quick refresher: weaning means that I change the settings on the vent so that he is initiating the inhalation and exhalation and is receiving a slight pressure support from the vent but doing a large part on his own. He had been weaning sporadically (doing well, in fact) but we needed to truly commit. The way it works is I put him on the wean but he dictates the duration of each wean. I monitor his #’s (mostly his volume) like a hawk and when I can see that he’s tired, we stop. Sometimes in the past, he’s asked to stop well before his #’s indicated any signs of fatigue so this really showed me that his resistance is in his head, not his body. This is totally understandable and I’m extremely sympathetic to the absolutely treacherous mountain he has to climb. What I was trying to get from him was consistency so that we could build strength from that. I believe Tyson when he says the weaning is tough and scary but I also believe in his strength even when he questions it himself. His first week, he weaned about 15-30 minutes every day and by weeks two and three, he was up to about an hour and a half. After two months, he was weaning 4 hours a day and by the end of April (yes, right before his blood clot issues), Tyson was weaning for 10-12 hours every. single. day. That meant that just about his entire wakeful period was spent weaning from the ventilator. This is obviously the starting phase of getting him off the vent which is one of our central goals! The entire process will take a long time because he will need to build on this and then start over with a lower pressure support and build up to 12 hours again and eventually only use the vent for bedtime and physical therapy. Point is, this is the MOST CONSISTENT PROGRESS he’s had since he’s had the trach. After our 1.5 wk hospital stay, we were ordered to rest from the wean for 4-6 weeks. We resumed in July and August (recently took a break for a very good reason which I’ll explain in just a bit) and in that time, he remained STRONG at 1-3 hours a day which, is impressive, given what he’s been through and the amount of time he’s taken off. I’m so utterly proud of him.
In June, we welcomed Dr. Shroff and her husband for a visit. They traveled all the way from India to check on Tyson and to be honest with you, the love and support and encouragement she pours into us is such a force. She texts me several times a week to check in on Tyson and was “with” us every single day via text while he was in ICU, offering support and guidance from 7,500 miles away. She is always there to lift us up whenever we’re feeling tired and worn out. ❤ And so, to take advantage of this monumental gesture from her, I organized a meeting, inviting Tyson’s primary care doctor, nurses, and therapists to our house so that they could all have an opportunity to meet her, ask questions and establish a better understanding of how the cells work and the significance of each of their roles in his recovery process.
This meeting was very productive. My heart burst as I sat back and watched everyone collaborate for Tyson’s benefit. What a dream come true. Dr. Shroff showed how to illicit small muscle contractions in his hands, wrists, and legs. We talked about the significance of even the slightest muscle contraction, because with that, we can build. We talked about our goals for Tyson which are obviously centered around building strength and endurance and continuing the weaning program.
Finally, for the last bit of news, I want to go all the way back to December 2018. I received a phone call on a Friday evening about a week before Christmas from one of our beloved Lyme doctors. In fact, he was the very first Lyme literate physician we connected with in 2012, immediately following his Lyme diagnosis. By the way, if you’re in the Lyme community, even peripherally, you’d agree that getting a Friday night call from this doctor is kinda the equivalent of getting a call from Oprah 😉 He was calling to let me know about a new medication he was using to treat a handful of his patients who, like Tyson had been struggling with chronic Lyme disease for several years and who similarly had experienced little to no success with traditional antibiotics. Straight away, I could hear the enthusiasm and feel his sense of urgency through the phone. He explained to me what the medication was, generally how it worked, and the unbelievable progress his one patient was experiencing with it so far. The drug is called Disulfiram and it’s classically used as an antabuse medication to treat alcoholism. A few short years ago, a wonderful scientist named Dr. Jayakumar Rajadas and his team at Stanford University applied this to a test tube containing the Lyme bacteria and witnessed near complete eradication of the bacteria. This set of findings were later discussed by Dr. Kim Lewis at the “Lyme Disease in the Era of Precision Medicine” conference hosted by the Steven and Alexandra Cohen Foundation in NYC in 2016. A patient of his saw this presentation and wanted to try it out. Anyway, after several weeks, the patient reported phenomenal success and recovery; he said he thought of Tyson and felt he would be remiss if he didn’t share this with us. We chatted for a while. I feverishly took notes, asked questions and thanked him over and over again for thinking of Tyson. We had stayed in touch over the years but hadn’t been to his office since 2013 so the fact that he remembered Tyson and took time out to share this meant so much. After we ended the call, I ran into Tyson’s room and filled him in on the call and then fixed up my notes so I could make sense of them a little better while the information was still fresh in my head (they were scribbled on a notepad with a blue crayon🙄). Next, I sat down and wrote an email to our Lyme doctor, sharing what I had learned. When he and I spoke a few days later, he explained to me that he was open to trying this for Tyson but because it was so brand new, he wanted to learn more about the study and he wanted to follow up with the scientific journal article that was due to be published within the coming weeks. He also wanted to do some preliminary tests on Tyson to make sure he was able to go for it.
The time we spent waiting over the next three months was productive as we worked on the vent weaning. Then we had the hospital stay for a couple weeks and then spent 4-8 wks recovering from that. So by the end of summer, our doctor gave us the green light to try this treatment option. The fact of the matter is that Tyson has Lyme in his system that needs to be eradicated (anyone who tells you “chronic Lyme doesn’t exist” is clearly operating with DECADES old information; he has been bed and house bound for about 8 years and still tests positive for multiple Lyme bands). We are witnessing not only the stabilization of his ALS symptoms because of the stem cell treatment, which, in and of itself is a MONUMENTAL victory, given the devastating prognosis for ALS patients, but we are also seeing undeniable physical gains. Imagine how well this process would go if the Lyme infection was knocked down and his body’s immune system wasn’t so shattered. The Lyme infection needs to be addressed. This bacteria is smart and has created a sticky biofilm around itself to protect from antibiotics, which clearly makes it difficult for traditional treatments to gain any traction. He is taking a series of supplements to break through the biofilm, supplements to offer mitochondrial support, detox support, etc., but for someone like Tyson with a chronic Lyme infection, the answer is essentially a never-ending Rx for antibiotics which just isn’t healthy and certainly not sustainable. Disulfiram is a powerful med but it is NOT an antibiotic and this would be rather short term treatment plan by comparison. For Tyson, we have to try everything. We have nothing to lose and no time to spare. We are selective and guided by the absolute BEST doctors in the world who simply DO NOT give up on him. Our responsibility is to go into everything with the strongest, most positive approach we’ve got and work hard. So that’s exactly what we are doing now. Tyson started this new med in late August. Our approach is to go “low and slow” meaning a VERY low dose at a VERY slow pace. By doing so, it should help mediate any Herxheimer’s reactions. This is essentially when the Lyme bacteria is killed off at a rapid rate, creating inflammation throughout the body which can manifest in a variety of ways, none of which are comfortable. For so many, the “herxing” is completely unbearable, forcing the patient to stop treatment altogether. For Tyson, “herxing” looks like major fever, sweats, increased heart rate, and chills. They typically last about an hour or two but given his current fragile state, this isn’t something we want to mess with.
We are in the middle of week 13 with this med and taking it easy. He is slowly working his way to a full dose, as he is currently tolerating it quite well. The main side effect he’s experiencing now is intense fatigue, (others taking this med have described it as a “coming out of anesthesia” fatigue..) but a positive takeaway with that is that he’s sleeping more soundly than he has in years. Sleep is so important and restorative for everyone, especially someone who is on a healing journey like Tyson. Also, there are three things in particular that we are closely monitoring in his lab work that could be strong indicators that this is working to kill the bacteria and help his immune system function properly. ❤ It’s still too early to make a full assessment but I believe this medication is working. He’s been sick for so many years and the damage is spread throughout his body so it’ll take a while to reach every bit of him. We will continue to remain patient and hopeful. If you pray, please pray for Tyson that this works and rids his body of the Lyme once and for all.
The boys are doing well. They love school and both have such wonderful teachers and friends who have welcomed and embraced them so genuinely! We are so thankful to be in this school district because it really feels like an extension of our family. Cal rides his bike down the block to his friends houses from time to time and I love seeing a pile of bikes outside on our sidewalk because it means he’s here with a group of his buddies. ❤ Abie’s best friend is the sweet little girl next door. They were thick as thieves this summer, playing together almost every day. He adores all of his friends in kindergarten and loves to tell me and Tyson about his day.
The boys and I do a lot of quality things like play catch in the front yard, watch movies, play games, and go for walks. It’s important that we keep ourselves busy and continue making these memories together because even though a major part of their childhood is fractured by Tyson’s illness, they must carry on and flourish as the sweet, young boys that they are all the while having the security of knowing they are completely loved. This whole thing is *terrifying* for me as an adult and it breaks my heart to try to see it through their eyes. They deserve to feel like normal kids, despite the heaviness they feel and carry with them every moment of the day with their dad suffering like this. As I got Calvin comfortable for bed the other night, he started to cry and said “it’s not fair that dad’s sick and can’t play with us”. I squeezed him and said, “I know. It’s not fair. But we are working to get him better, okay?” He nodded and said, “I know. Dad is so strong.” I’ll never tire of sharing how proud Calvin is of Tyson- he really looks at him like he’s Superman or Hulk. He always has. It just goes to show how powerful their relationship has been from the start.
So how is Tyson currently? He has good days and not so good days. On his good days, he is alert, and healthy looking and if something is particularly funny, he even looks like he’s trying to crack a smile. On his bad days, he looks absolutely wiped. The stem cell treatment is still on-going and as I said, we are seeing improvements, albeit slowly, from that all the while. We need to again, stay focused and patient and keep him healthy so the cells can do their thing. His physical and occupational therapy appointments have been bumped down from five days a week to two because of insurance. We knew this was inevitable and while we are grateful for the full summer schedule we were granted, I’d like to find a way to get him back to five days. I work with Tyson every single day obviously and have also been learning to do lymphatic massage and dry brushing which are both great for getting toxins out of the system but obviously the more professional help he can get is always ideal.
As I mentioned before, these updates take a long time for me to pull together, so I really mean it when I say that I appreciate your patience with me. There isn’t always an update to give and when I start to gather ideas of things to share, life has a habit of getting in the way. Some days it feels like a race to just get through it with all of us in one piece with no tears or breakdowns and some days we laugh and feel good all day long. We work hard for those good days. I pray every morning when I wake up and every night before bed for this nightmare to be over and right now all we can do is work hard and enjoy life together the best way we know how while never losing sight of our end goal. Guys- Tyson is a force!! We are still here!! And that is a feat in and of itself. ❤
It’s so important to us that we show our gratitude for you all as much and as often as we can. It means the world that you take the time to check in on Tyson by reading this update, by sharing his story, by sending texts, prayers and calls and for the incredible fundraising efforts you’ve made on Tyson’s behalf- you’ve helped pay for doctor’s visits, medications, treatment, and so much more that’s simply not covered by insurance. You guys are amazing.
I will be back with an update soon, sharing his beautiful progress we’re praying for now.
6 thoughts on “November 14, 2019”
Annie, your strength and courage and Tyson’s bravery are truly inspirational! Ive read this twice … crying both times… your honesty is so poignant and beautiful… I’m so happy things seem to be on an even keel right now. I think of you all so often and pray for you at daily mass. You’re an amazing woman! Your strength reminds me of your mom! Hugs. God bless you all !
Good to see pics of family…everyone looks so good..I love you all kisses and hugs to all…❤😚
Amazing Ann. You published on your birthday. The details are so helpful to all of us in understanding the challenges and triumphs. Love to you all.
Thank you for giving us all an update on the most intimate details of Tyson’s recovery and your lives in the mix of it. I shake my head in wonder and awe. God blesses you all, every day.
My Prayers are still with you Tyson
Keep fighting my friend
Ann you are a strong woman
Your family stays in my Prayers
Still reading, still praying, still believing. Your strength is powerful.
-On behalf of the Benjamin Family (via Camp Joharie/Bethel Gospel Tabernacle)