Monday, March 2

The Thursday before last (February 19th) began like every other day had that week. Tyson’s aide had arrived in the morning and my dad (who was visiting for the week to help because I had to work late) helped me get the boys ready in the morning and off to school. Tyson’s PT time was scheduled for 2pm. I came home for lunch by 1 so that I could give Tyson his feed and get him ready and out of bed in time for Mike to arrive. Our routine for getting Tyson comfortable with his breathing had gradually become quite an ordeal. It involved me sitting Tyson up, removing his mask, helping him spit up whatever was too much to swallow, laying him back down so he could cough, and then sitting him back up. We literally did this for 1-2 hours on average for the past two weeks as Tyson’s throat and chest muscles weakened.  However, on Thursday, 1-2 hours turned into 4 hours. Mike arrived at 2 and we got Tyson up on PT table. He then attempted to do some exercises with him only to be stopped every two minutes by Tyson shaking his head and looking at us with a panicked face; he was clearly in respiratory distress.  We spent the entire session going back and forth trying to help Tyson with his breathing and swallowing.  That said, by 4:30 or so, Mike had to leave and we assured him we had it under control and Tyson would get over this hump in no time. 

By 5:15, my dad had left to pick up Abe and Cal at school. Tyson looked at me as I sat him up one more time to catch his breath and mouthed, “911” to me.  I said, “Tyson- are you sure?  The boys will be home any minute from school and once I call, that’ll be it.”  He nodded and repeated himself.  I texted his mom, Audrey <3 and told her what was going on. I think at that point, she said she would be making plans to come down as soon as possible. I placed the call to 911 and explained that my husband was in respiratory distress. They confirmed Tyson’s info and our address and said someone was on their way. Before we hung up, I said, “Can you please do me a favor?  Can you ask the driver to turn the siren off as they approach the house?  We have a little 4 year old and I don’t want to scare him.”  He said, “yes- I’ll make sure of that.”  So, I threw on a sweater and a pair of sneaks, grabbed a sweater for Tyson and got his bi-pap machine battery ready. I also grabbed 3 cans of his formula and a list of his current meds (like I don’t have that memorized already..).  My dad came home with the boys just as the ambulance arrived. He took them downstairs to play while I helped get Tyson out of the house and into the ambulance.  Once Tyson was set, I ran into the house and down the stairs to give Calvin a kiss goodbye and explain to him that I was taking daddy to the doctors. He said, “ok, mom!  I love you!”  And with that, I ran up the stairs,  (already fighting some tears, but told myself to get it together and focus…) grabbed my purse and hopped into the front seat of the ambulance. 

Tyson was hooked to his bi-pap as we rode to the hospital.  Pretty typical of anyone, particularly from the medical field, who sees Tyson, the EMT driver had a million questions about him because he is so young and so crippled.  She was very touched by the 2 minute re-cap I could offer and said she would be praying for us. <3 Once we arrived, they got him hooked up to the monitor that tracks his heart rate, blood pressure, oxygen levels, etc.  His levels were decent to start. The E.R. doctor came in and suggested putting Tyson on their bi-pap but we declined bc Tyson was comfortable with his.  The respiratory nurse/technician, Carolyn, came to meet with us. I explained Tyson’s condition, that we were scheduled for a tracheotomy on Wednesday and that he was extremely weak and hasn’t slept in days and as a result, he was having difficulty swallowing and breathing.  She and the doctor discussed giving Tyson a suction, which Tyson was happy about.  Just a few minutes later, all of Tyson’s stats dropped and he was in distress.  The doctor came in and was preparing to intubate right then but as they switched him quickly to their big. hospital bi-pap machine the levels returned to normal. Whoops. I suppose we should’ve listened to them in the first place.  Anyway, the next hour or so was all about getting the new mask comfortable for Tyson.  Carolyn told us she wanted to do the “big suction” for Tyson but everytime she removed the mask, his levels went crazy so she explained she would wait until they were more stable.  She used the yankhauer suction on him (which is like what you’d use at the dentist) and that helped a bit. In fact, she said I could help him with that when he needed it.  I knew she could see how actively involved I was with Tyson from the moment we got there. I wouldn’t sit down, recited all medications and doses to the nurse and spoke for Tyson when necessary.  I was polite, not a crazy person, but just my normal “voice” that likes to get our point across.  Carolyn was very sweet and took a liking to Tyson right away. “I have a feeling we are going to become buddies tonight!”, she joked with him. 

She went on to tell us they were preparing a room in ICU for Tyson and to sit tight, which was totally fine for us.  I texted Mike to let him know we were in the ER because he was just helping us for 2 hours at the house and he’s very involved in Tyson’s situation. He had arrived while we were hanging out waiting for the room.  Around 10pm, I looked at Tyson and saw his eyes kind of bug out a bit. I asked if he needed suction. He said “yes- and get Carolyn”. So I started to suction and had the nurse page her.  When she arrived, I told her he needed the big suction. She began to get things ready for that while I used the Yankhauer to get whatever I could out of the way.  What happened next, literally happened in about 30 seconds:  I looked at Tyson as he was shaking his head back and forth and mouthing, “I can’t breathe!”  I translated to Carolyn and asked her to please hurry. Very calmly, (as I suppose one should be as an ER doctor/nurse) she said “I’m almost ready…you’re okay Tyson”.   She asked him a question and he didn’t answer her. I just assumed he was annoyed at this point, so I repeated the question. He didn’t respond to me either. His eyes looked right through me. I said, “helloooo Tyson!” And clapped my hands in his face and even laughed nervously.  His head tipped to the side and he stared past me.  I spun around and said, “Mike! He’s not answering me!  Why isn’t he answering me?!”  Mike was in shock and just said, “I don’t know!”  The doctors rushed into the room as I was jumping up and down and trying to get Tyson to hear me by shaking his face.  I yelled, “he’s not responding!  Please help him!”  They said, “we are going to intubate, come with me” as they brought me and Mike next door to sit in a small office. 

I was obviously panicking and very shaken up but part of me felt calm bc I knew the intubation would bring him relief almost instantly.  Once Mike and I got to that room, I remember saying, “what the hell just happened?!”  He offered comfort by telling me Tyson would soon be fine with the intubation.  I emailed Dr. Shroff to tell her what was going on since she was there when this happened a year ago. She emailed back and said that they were all praying.  A few minutes later, the E.R. doctor came into the room with his head down and sat in the chair across from me. “I am very sorry to tell you this, but your husband’s heart has stopped. He’s gone into Cardiac Arrest.”  I just remember yelling, “WHAT?! Are you serious?…okay, so now what?  What does that mean?”  He said, “It doesn’t look good. I’m very sorry to have to tell you this.  The prognosis is not good.”  At that point, I begged and pleaded with him and said, “Please.  We have two little boys. Please keep trying!”  He looked at me and then at Mike and just shook his head and said he was sorry and that he would be back soon.  We heard the “coding” being paged and the sound of people running down the hall toward his room.  My entire body began to shake and all I could think about was- how am I ever going to explain this to Calvin?  What am I going to say to him?   I started to cry and the thoughts that entered my head were causing more and more pain.  I kept thinking, “but we aren’t finished yet!”. I texted Audrey who was about to leave her house to head to Greenwich and told her she needed to get the family and come down right away. I wrestled with telling her everything because she was 3 hours away and I didn’t want her to take that long drive with that kind of pain taking over.  I also wanted to give Tyson time to pull through.  The longer we sat there, the more anxious and frantic I became.  I wanted to jump out of my skin. Thirty-five minutes later, the doctor came back into the room.  He said, “I have slightly better news: we’ve got a heart beat.”  I said, “Oh, thank God!”  He continued, “Well, I need you to understand that the prognosis is still not good. I don’t think he will survive the night. At most, you probably have a few more hours with him.”  I can’t even remember what my response was, if any.  I was numb.  I called Tyson’s mom to fill her in.  She told me to hang in there and that she, Joe, Dontay, Caleb, and Nate were on their way. 

Two resident doctors came in to see me next. They explained what the immediate plan was for Tyson.  They said they needed to begin a hypothermia protocol on Tyson right away. This is done basically by injecting frigid saline into his body to lower his temp to around 92 degrees in order to preserve neurological function.  It’s similar to a medically induced coma, but no meds are really involved. Tyson’s heart stopped for 35 minutes and they explained that they wanted to limit any brain damage.  They also said that they weren’t certain what caused the cardiac arrest but thought what likely contributed to it were blood clots in his brain and lungs and “what would you like us to do if we find blood clots?”  I told them to do whatever necessary to keep him alive.  My body was definitely shaking by now but I kept thinking- Tyson’s got this. He’s so strong. I KNOW he doesn’t have blood clots.  And I just kept thinking about our boys. The other young resident doctor sat down and sort of interviewed me to get a history of the past 24 hours for Tyson.  

The head E.R. doctor came in again.  “Do you want to see him?”, he asked me.  I jumped up, practically shoving him to the side and ran down the hall to his room. There he was, flat on the table, the Bob Marley shirt that Calvin and I had tie-dyed for him was cut up the middle, he had multiple rectangular shapes burns on his chest from the paddles and his eyes were rolled back.  Nurses were hustling around the room preparing Tyson for transport to ICU.  I held his hand and kissed his forehead and said told him I was there and that he is so strong and to hang in there. I told him that the boys and I needed him and that we loved him so much. As I was talking, his eyes rolled forward a bit and then back again. The nurses said, “oh, his eyes are moving!” and smiled at me. I stayed as long as they allowed me, which was probably about two minutes in total and just held his hand and kept talking.  Mike and I were told to wait in that room again until security was able to escort us up to the ICU waiting room.  Our friend Gia arrived next and shortly after, the three of us were on our way upstairs. 

Once they began the hypothermia protocol, the doctor came out to the waiting room every 30 minutes or so to let me know he was still alive.  Around 1:15 a.m. (3 hrs after his cardiac arrest), the doctor came in and said, “I’ve been with your husband for the past two hours and I think he’s watching me and if he is, that means he’s waking up and we can stop the cooling protocol.” She said that she walked past him and felt his eyes on her and said, “Tyson- are you following me?” And then he blinked. Then she had him follow a pen as she moved it in front of his face and he was able to do that, too. She said, “hang on, Tyson. I’m going to get your wife.”  So then she said to me, “I want to bring you in there to see if he has a reaction to seeing you.”  When I went into the room, I saw Tyson lying there on the bed with his eyes open slightly. I came around to the left side of the bed where his head was facing, grabbed his hand and said, “Hi, honey.”  He immediately started blinking, his eyebrows went up and down and his lips started moving. The doctors and nurses collectively said, “wooow!”  I said, “Tyson. I’m here. Do you hear me?  You know I’m here with you?”  He blinked. I said, “do you understand what the doctors are telling you?  If you’re with us, you need to let me know and we can stop this.”  He blinked again. The doctors explained to me that his body was in shock and that he was given an enormous amount of epinephrine to jolt him back in the E.R., so his face may just be twitching. So I said to Tyson, “Okay, honey- if you’re here with us and can understand what I’m saying to you, give me two really good blinks.”  He looked right at me and blinked twice. The doctors and nurses were completely convinced at that point and stopped the cooling.  They added blankets on top of him to warm him back up. I held his hand.  Carolyn came into the room and gave me a big hug and then looked at me and said, “oh, honey- that was too close.”  She was part of the team that saved Tyson. I will never forget her. 

So this was amazing- he was conscious and waking up. The next thing that needed to be done immediately was a CT scan to check his brain and lungs for clots. In order to do this, they needed to inject a dye into his system which needed to go through his picc line (in his arm). Because the line was installed in India, the question was whether or not it was a Power Picc, bc apparently that’s the only kind that you can put the dye through. I had no idea (which is SO unlike me 😉) so I emailed Dr. Shroff. She got back to me right away and confirmed it was not, in fact, a Power Picc. So, they had to install a temporary line in his thigh.  They told me he would be back soon and for me to wait in his room. As they rushed him down the hall, they passed Tyson’s parents and brothers who had just arrived. 

His parents gave me a hug and I brought them up to speed about everything that had just happened.  By then, it was nearly 3 a.m.  I thanked Mike and Gia for staying with me and told them to go on home. I knew the worst was over. I am so, so thankful that I didn’t have to go through all of that alone.  I sat in a chair next to where Tyson’s bed would soon be wheeled back to, placed my head in my hands and cried.  And I continued to pray.  Tyson and I have been through a lot together but there has been nothing that compared to this. I cried out of exhaustion and slightly out of a sense of relief.  

Tyson was wheeled back into the room 45 minutes later. As we all stood at his bedside, we watched Tyson’s tired, bloodshot eyes open and close. He would make eye contact with me for a moment and then stare at the ceiling and then close his eyes altogether.  His ICU nurse told us that his scan results should be done soon and remarked on how well Tyson was doing.  While we waited, I held Tyson’s hand as he slept.  Finally, the scans came back and showed no blood clots in his lungs or his brain. What a relief that was to hear.  A couple hours later, around 6am, another doctor came in to tell me that Tyson was doing “amazingly well”.  His heart rate was still pretty high but everything else looked good.  For me, it was exhilarating to see the shock and amazement in the doctors and nurses faces. They were virtually speechless.  They said we weren’t out of the woods yet, but well on our way.  If he could make it through the weekend without incident, we would do the tracheotomy on Monday. 

Later that day, Friday, they brought Tyson in to replace the picc line in his arm so that it was more functional. This prevents Tyson from being pricked by needles every time they need bloodwork or to give IV meds. That procedure went beautifully.  While he was in the operating room, I sat just outside and waited. A cardiologist came and introduced himself to me and began to explain me that Tyson had likely sustained some damage to his heart and they would need to do an echo cardiogram next.  Yet another doctor telling me what to expect and that I should prepare myself… Those results came back and showed his heart was 70% efficient, operating very well and there was no reason for follow-up with the cardiologist. 

My husband is amazing.

The next couple of days following his cardiac arrest, he was only able to communicate through blinking. Soon, he was able to nod or gently shake his head.  He would move his lips to speak or whisper but because he was intubated and had 3 tubes in his mouth, it made it nearly impossible to understand him. They had to give him something for the pain and to help him sleep (Tyson suffered some broken ribs from the CPR).  Thankfully that weekend, Tyson slept through most of the day. I was extremely relieved and felt so at peace to see him sleep so soundly. He hadn’t slept that well in ages.  By Sunday, he was more awake.  Monday came and he was scheduled for his trach that evening.  Audrey and I met with the surgeon who to perform the procedure. He was so sweet and kind which really put me at ease about it all. Besides, after having seen all that I had a few days prior, I was welcoming the trach. Tyson was sick of the tubes and ready as well.  Anyway, the surgery went very well and I was SO, SO happy to see my handsome husband’s face again!!  He’s had that bi-pap mask on for about a year. 

In the midst of all of this, I was asked to meet with one of the Infectious Disease doctors who was one of many intrigued by Tyson’s case.  He had asked me to bring in all of Tyson’s medical records so he could investigate.  I had told everyone from the moment we arrived that he suffered from Chronic Neurological Lyme with ALS symptoms and that we were being treated successfully with stem cells.  This man proceeded to tell me that they would not be continuing his Lyme medication during his hospital stay because they did not feel he had Lyme, despite the 3 positive Lyme labs I showed him. Pardon me, but if Tyson were receiving medication for any other disease, would it have been questioned?  I highly doubt it.  He told me he didn’t like the lab they were drawn at, Igenex, and then said, “That lab is in California. There is no Lyme in California.”  Oh, the poor thing.  I couldn’t help but laugh and then said, “I’m not here to convince you about whether or not my husband has Lyme. We are going to address his breathing issues only and I’ll continue his Lyme treatment once we get home.  You’re not a part of our journey and that’s totally fine.”  I felt my face getting hot and kind of wanted to conduct a quick Lyme seminar for him but quickly realized I  hadn’t slept in two days and thought it best to leave it at that and politely excuse myself. 

Here is what’s going on currently:  Tyson is on a ventilator which means the machine is doing the breathing for him; inhale and exhale.  The object is obviously to wean from the ventilator which is done very gradually by doing something called cPap trials.  Controlled by the Respiratory team, Tyson tries breathing on his own with zero support for as long as he can tolerate. The first day they attempted this, Tyson failed. The next day, he did 5 minutes and the day after, he was goaled at 15 minutes and did 20. The other part of the trial is having Tyson on the cPap which offers a little support. He has to initiate the inhale and exhale but the machine helps and if Tyson ever feels too tired to breathe, it automatically kicks in for him. This is all very exhausting for Tyson; it’s truly a workout. But he’s doing great. He does a few hours a day now on the cPap :)  Like I said, this is very challenging and draining for him, but it’s crucial for the weaning process that he push himself, within a safe set of parameters. 

Additionally, Tyson cannot come straight home from the hospital when it’s time. For one, it’s not safe at the moment. I will be getting basic vent training at the hospital, but because this is all new to Tyson, his needs will fluctuate which means the settings of the machine will constantly need adjusting. Secondly, Tyson needs intense respiratory therapy.  Even if I found someone to come to the house to work with him an hour a day, it wouldn’t be enough for what he needs. The Respiratory team told us about an incredible place about an hour north of Greenwich named Gaylord Rehab Hospital ( that focuses on vent weaning. They have an incredible reputation for being one of the best respiratory facilities in this part of the country and Tyson and I are hopeful he will be accepted for treatment.  If he’s accepted and once a room becomes available, Greenwich Hospital will transport him there. He will stay at Greenwich until then, thankfully. 

The boys are great.  Cal knows I had to be with daddy all day and night and when I could, I would come home and do dinner/bath/books and put them both to bed and head back to the hospital.  I took Cal to see Tyson on Friday for 20 minutes before school. It was so good for both of them (and for me, too!). 

We are all doing well. We are truly taking one day at a time.  Thankfully, Tyson’s mom is here helping me take care of him. We are working in shifts. 

So much more to fill you in on soon. Thank you so much for your love and support. 


Sunday, February 15

Good evening friends and family:

This past Tuesday, Tyson and I met with our pulmonologist, Dr. Sachs in Stamford. We were hoping he could offer a small, temporary solution for Tyson’s breathing and swallowing troubles so that he could be comfortable and benefit more from his PT sessions. Because Tyson is so weak, he was forced to wear his bipap in the car and in the doctor’s office. I updated the doctor on Tyson’s condition (the last time he saw Tyson was in 2012 when he had the bilateral pulmonary emboli and we were about to go to India for the first time). I explained that this is a rapidly progressing disease that we are racing to keep up with and while he has been steadily declining for the past 4 years, there have been marks of significant improvement throughout the process, almost entirely due to the stem cells. He said that while he is ignorant to the subject of stem cells, he does not discount their potential. I explained that his muscles have grown so weak that it’s become increasingly difficult to breathe and swallow, which was totally apparent as we sat there in his office. His suggestion was not for a pill or a special inhaler like we had secretly hoped, but for an immediate tracheotomy. He said that Tyson was facing respiratory failure. As we sat listening to the doctor explain the procedure, I fought to hold back tears. I looked at my husband, struggling to breathe with a tear rolling down his cheek and I began to cry. The doctor spoke to us about some patients being adamant about not having a tracheotomy ever, even if it means saving or prolonging their life. He asked if we ever had this conversation and we said, “no, not really”. I think at some point, he asked if we wanted to go ahead with it (he was ready to admit Tyson that moment) but Tyson shook his head and said, “no.” Dr. Sachs said that we were taking a huge risk at this point by not having it done and just trying to get by on our own and if at some point Tyson became too weak to breathe, there would be nothing I could do. His objective was to put us in a position that eliminates risk and takes the danger out of play, so to speak.

I gave him Dr. Shroff’s contact info so they could discuss and we left his office. He asked us to think about it and let him know what we want to do.

Tyson and I spoke very briefly about this; we decided it wasn’t time to take this step, that we were happy to learn about the procedure in the event that we do need it someday and that we would continue pushing through the way things were. By Friday, Dr. Shroff emailed to let me know she and Dr. Sachs had spoken and that she wanted to talk to us. The following morning, (evening in India), she called. She told us that Dr. Sachs felt strongly about the procedure for Tyson and that she agreed. She said, “it’ll keep him safe and it is reversible!” She said, “you remember we almost lost Tyson a year ago, we cannot risk that again. This will actually help him get stronger. He will breathe better, his cells will get the oxygen they need, he will sleep better and should even be able to speak and eat again!” This made sense to me and I immediately felt at ease hearing it from her. I brought the phone into the bedroom and held it up to Tyson’s ear. She explained it all over again for him to hear and said to him, “Tyson, you’re a very strong person and you need to stay strong. This is just a phase! This is a phase and you need some help getting through it. Once you feel strong enough, come to India and we will begin the weaning process.” Tyson nodded and whispered “thank you”. Before we hung up, she gave me a small list of supplements and vitamins to get Tyson on and asked me to have Dr. Horowitz find as many “nerve growth factors” as possible to get him on as well. Ugh. This has felt like an enormous, crushing blow, but as Dr. Shroff said- don’t look at it as a step back, but instead, consider it as the thing we need in order to move forward.

So it’s settled. I will call Dr. Sachs in the morning to arrange the surgery. I know Tyson’s scared. I’m scared and my heart breaks for him. I pray that he sees this as a turning point for the better and that the good things we’ve been praying for to see will start appearing as a result. I’m worried/concerned, too with regards to Calvin. It’s bad enough he has to see his daddy like this, but can he handle one more scary thing? It beats the alternative, so we will make sure we talk it over with him so he’s comfortable. It all seems to resonate best with him when I put it in terms of superheroes…which obviously is the category his daddy falls under.

I’ll leave you tonight with a very hopeful story: I’ve mentioned in the past (or at least I think I have), about a German patient who suffered from Lyme/ALS and received stem cells at Nu-Tech just like Tyson. Her name is Christine and she is a remarkable woman whom I’ve had the pleasure of talking with on a few occasions. She is the woman who everyone at Nu-Tech said Tyson reminded them of because of the nature of their illness. I’ve reached out to Christine in the past for support when I was at a loss of words with Tyson. I reached out to her most recently about a week ago. I asked her if, at her worst, did she ever have difficulty breathing or swallowing. She said, “oh yes! And it got much worse before it got better and even then, that took a long, long time”. She asked what Lyme meds Tyson was on and I told her that he’s just on IV rocephin (which, by the way, is considered to be the most potent Lyme drug) and that he’s tried almost all other Lyme meds at one point or another. She said that her LLMD (Lyme literate doctor) in Germany, put her on an antibiotic protocol that she attributes, along with the stem cells, to her healing.

Um, so can I have that recipe?? :)

She gave me the names of the antibiotics and I passed that info onto Dr. Horowitz and his team and to our neurologist who said to definitely try it, as long as there are no side effects that are unmanageable for Tyson. There is a theory among some Lyme doctors and patients that by playing with the variable/combinations of antibiotics and medicine schedule, you are able to successfully kill more of the Lyme bacteria. I think that’s because after treating w the same medicine for so long, the spirochete become sort of intelligent and learn to evade it. So when you take a break from the meds, they creep back out…and then you hit them again with different meds and so on. Tyson feels good when he’s had the rocephin, so it stands to reason that perhaps there is more we can do to fight the lyme. I am so curious and hopeful that we can work with the German doctor and find something that’ll click for Tyson.

Christine told me to tell him to think positively and to stay strong…he WILL get better. You can’t beat that attitude. I ran into the bedroom to tell him about our conversation and his face light up.

If you didn’t know already, my husband is a fighter. We will get through this next step and he will continue his healing process. Thank you for your love, prayers, and good thoughts.


Saturday, February 7

Hello, friends and family:

**Prepare for a long read- I have honestly been working on this off and on for a few weeks. There just aren’t enough hours in the day to do everything I would like. Keeping you all informed is certainly a priority, as I know many of you wonder how Tyson is doing every day. Thank you for your patience as I work to get this to you:**

Happy New Year to you all! It has been quite a while since I’ve given a proper update on Tyson. Let me start by rewinding a bit to September:

The start of 2014 brought us to an incredibly devastating state of Tyson’s illness. By the grace of God, the healing hands of Dr. Shroff and Tyson’s own unbelievable strength, we avoided the ultimate tragedy. So, this year has been about recovering from a near-death state and maintaining a stable condition. The nice thing is, he always feels good when he’s in India. The trouble in the past has been when he comes home, he declines a bit as a result of numerous factors. Our first order of business was to determine what steps we needed to take or changes that needed to be made in order to avoid any decline in his health.

First, he needs Physical Therapy as much as possible. This does not coincide with what our insurance deems necessary for his case; the most they’ll offer is 3 days/ week (criminal, no?). So, in the past, I’ve spent an inordinate amount of time fighting with our insurance to try to get more help for Tyson all the while, he’s weakening. In addition, we struggled quite a bit to even get him to these measly 3 appointments at Burke because of the weather and the increasing level of difficulty involved in transporting Tyson (which of course sent me down a dead-end road of pursuing a transport service that would, in theory, pick him up at home and drop him off). The other piece of the puzzle is that Tyson now requires assistance while I am at work. We lasted as long as we possibly could without any help, but with Tyson’s recent struggles, we realized this couldn’t be avoided any longer.

So first, we set out to find a physical therapist who could come to the house for the sessions. I did a search online and found a company in Old Greenwich called Elite Health Services that looked pretty impressive. They worked with professional athletes and everything on their website seemed very thorough. I gave them a call on August 30th. I briefly explained our situation and the receptionist was able to connect me right away with the director of PT. His name is Mike and I got a great vibe from him straight away from our phone conversation; he seemed energetic and enthusiastic. As I began to tell our story, a part of me was admittedly nervous for what he might think. Sadly, Chronic Lyme disease within the medical community is often viewed as a mythical diagnosis and completely disregarded and on top of that, Tyson was receiving experimental stem cell therapy. I was afraid that Mike might take one look at Tyson and tell us he couldn’t help him. The other part of me didn’t care. I don’t care if people don’t believe or understand what Lyme disease can do. But the bottom line is: we need someone to help us.

Mike came to the house to meet Tyson and myself that following Wednesday. We thoroughly delved into Tyson’s medical history and Mike didn’t flinch. We could tell he was as eager to get started as we were. Tyson and Mike discussed short term and long term goals and I couldn’t help but point out the photograph on our wall of Tyson dunking during a high school basketball game and said, “we want this. Can u get him here again?” We all laughed a bit :) (I need to add a little levity when we’re discussing such a heavy subject).

Our first session was September 5th (our 5 year anniversary :) ). And not only is Mike incredibly energetic, he is also extremely knowledgable. He has some background in respiratory therapy which is rare for PT’s and lucky for us! Right away, he noticed that he could feel Tyson’s muscles contract when doing leg extensions with him and so forth. In the coming weeks, he began a regimen of leg and shoulder exercises as well as shoulder, neck and breathing/lung work. Tyson felt better almost immediately and after the first day, we knew that this was the missing piece of the puzzle.

Through Mike, we were able to find this wonderful home health care company called Privatus that introduced us to Doug, Tyson’s aide. Doug is so great. He’s smart, patient, and truly cares about Tyson. It takes a LOT to get Tyson comfortable; he is literally trapped in his own body so when he wants his foot moved an eighth of an inch or his hips moved or his masked taken off and put back on 10 times in a row, it can be very frustrating for the caregiver. But like myself, Doug understands that regardless of how “annoying” it may be for us to try to meet Tyson’s demands/requests, it’s a million more times difficult for Tyson to be in the position he’s in. Doug does everything to make Tyson comfortable and that makes me happier beyond words.

Quick interjection with this story of our doctor’s visit: We met with Dr. Katz, our neurologist, at the end of September. We hadn’t seen him in several months and he admitted he was nervous/anxious to see Tyson after hearing briefly about what happened this spring. As we entered his office, his face lit up! He was so happy with Tyson’s appearance, despite his voice being at a whisper. He said it seemed as though something had shifted; almost as though he had turned a corner and was making a trek towards recovery. Regarding the sparks of improvement Tyson experiences…he said “once you begin to see improvement, there is no limit to what can be accomplished”. Like I said before, if it were truly ALS, there would be no improvement. None. So while the improvements may seem minor, they’re in fact extremely significant. I brought with us a letter from Mike describing his progress and projection plan with Tyson; Dr. Katz was thoroughly impressed. Tyson and I felt good. We’ve actually never left a neurologist’s office with a smile.

The therapy sessions continued Monday thru Friday for the next several weeks with Tyson experiencing little to no decline. I would definitely describe this trip home as “productive”. He returned to India just before Halloween for a 6 week stay. His time in India was also very productive. He received stem cell injections throughout the day and had several procedures over the course of the 6 weeks. We weren’t able to talk much largely due to the time difference ( 10 1/2 hrs) and because he spent a significant portion of his day in bed resting. We texted daily and I spoke with his mom often, which was really great. I know I’ve said this before, probably a million times, but it’s tough being away from him for so long. However, knowing he was with his mom and best friend and with our family at Nu-Tech, put me at ease.

Here he is in his room at the clinic:


Tyson saw improvements in his core and neck muscles. What frustrated him greatly was that his breathing and swallowing had not improved during this trip as we had hoped. What I pointed out to him was that we had only begun to receive stem cell injections in his chest in the past year while the rest of his body has been receiving them since Day 1; they just need time to catch up. And the fact that we are seeing ANYTHING improve is reason to remain positive and hopeful.

The day Tyson came home in December, it was easy to see how much he was struggling. This trip had been rough for him. The flight was delayed several hours which meant that from the time he left the hospital to the time he finally was seated on the plane was approximately 7-8 hours. The most he had been in his chair was only a couple hours on average and then he would need to rest his body and give his lungs a break by putting his bi-pap mask on. So, this extended period of time was completely overwhelming for his body. He was hooked up to the mask for the car ride from the airport to our house and almost immediately I put him to bed for more rest. I scheduled Mike to resume PT session on Monday which would give us the long weekend to recover. The first day, he did not get out of bed. I didn’t really think much of it considering how brutal his trip had been. Over the next few days, he stayed in bed. I was able to get him up and in his chair on Saturday and Sunday for 20 mins each day. He just couldn’t breathe without his mask and the swallowing was equally challenging for him. His saliva had become too much to swallow, and when this happens, he is forced to spit into a towel. I’m sorry for the details- I want you to know what he’s going through and it just is what it is right now and to be honest, I’ll probably never fully share all that we go through, for your sake. Anyway, by Monday, he still wasn’t able to leave bed, so Mike did PT while Tyson laid in bed. This is how the rest of that week went…and the following week. We all thought he would recover from his jet-lag after one week (I mean, let’s face it, a 15 hr flight home from India is difficult for anyone) but we were reminded once again that the reality is- it simply takes longer for him to recover than it does for you or me. After about 3 wks of doing PT in the bed, Mike contacted me for help with Tyson. He expressed his concern with him not getting out of bed and said that in order for Tyson to make any improvement, it was mandatory that he do his PT sessions on the physio table or at least from his wheelchair so that Mike could work with his hips and shoulders. I told him I was certain that Tyson was experiencing some fear and anxiety regarding the breathing and that I would be present at the next few sessions in order to help him get over the hump.

And that’s precisely what happened next. At the first few sessions, Tyson even had me sit directly in front of him while he was on his side to help calm him, just to give you an idea of just how scary it is for him to struggle with his breathing. As usual, Tyson proved to be stronger than he gave himself credit for and is doing well with PT. With the help of our friends at Burke, we’ve found a speech therapist who focuses on “breath support” and will come here on Tuesday for a consult and hopefully begin working with Tyson as much as possible. She will help him learn to breath and swallow more effectively and also strengthen his lungs and mouth muscles (put those stem cells to work!). We look forward to meeting her!

So, as with many Lyme patients, Tyson experiences good and bad days. The bad days are extremely difficult; struggling for every breath, barely able to swallow, hardly any energy to even sit up, and an overwhelming sense of despair and defeat. All he wants is to be able to hold his kids and play with them. He apologizes to me for not being able to help with the boys, apologizes to Cal for having to see his daddy like this…it’s overwhelming. In fact, like I said, I will probably never fully share the details of our toughest days but the good news is, we have good days and we are intent on having more. I check in with Tyson frequently about maintaining a positive mindset and ask him what he visualizes…he said he pictures himself playing golf and stepping on the clutch in his old car. He smiles when we talk about these things. Also, Tyson and I have a nightly routine of watching “Breaking Bad” together which is so great…it gives us a sense of normalcy and reminds us of our former life together. :)

We begin and end each day by thinking of all of the wonderful things we are grateful for. We have so much. And so, I’ll wrap this up by thanking all of you for your endless support and prayers and positive vibes. Thank you for the dinners, the groceries, the company, the texts, the calls, the messages to make us smile, taking Cal for play dates, shoveling me out of the driveway, lending an ear or a shoulder, your patience and understanding and for the many donations to the TysonFowlerFund. You have no idea how this all lifts us up and keeps us moving. And finally, thank you to Mike and Doug and our doctors who stand with us in this fight.

I have more I am working on and will update again as soon as things materialize.

Much love,

Annie and Tyson <3

P.S.- leaving you with some sweet pics :)



Thursday, December 11

Hello friends & family!

Tyson, his mom and his friend Matt have safely landed in Newark, NJ and are almost to our house! Calvin, Abren and I are anxiously waiting for them with coffee and muffins on hand, as I am sure Audrey and Matt could use some comfort foods :)

I will send you all an update on Tyson’s current condition and details about his trip as soon as I can. Overall, he has remained stable which is an enormous accomplishment and has even made some small improvements. The important thing to remember is although the gains may seem small, there are much greater gains being made under the surface throughout his body; it’ll just take some time to see them!

Thank you all for keeping us in your prayers.

With love,
Ann and the boys :)

Wednesday, October 29

Hello friend and family-

After about a 10 1/2 week hiatus from the blog, I am writing tonight to let you know that Tyson is on the plane en route to India at this moment with his mom and his best friend, Matt. This will be Tyson’s 6th trip for stem cell treatment!! He is so excited to head back to Nu-Tech and is anxious to make some more progress in his recovery.

I will write more later on, but for now, know that this has been an overall successful stay at home for Tyson. He is at his weakest (with the obvious exception of the trip back in the spring that landed him in the hospital); his voice is at a whisper and he is extremely tired. Once he resumes his stem cell therapy, he will begin to feel better!

Thank you to everyone who keeps us in their thoughts and prayers.

More to come…!

With love,

Thursday, August 14

Hello friends & family:

My message is brief tonight. I am writing to say that Tyson and his parents are all home safely from India. They arrived here in Greenwich around 6:45 this morning. The boys and I greeted Tyson outside as the car pulled up to the front of the house. I got tears in my eyes as I watched Tyson be reunited with Cal and Abren. He couldn’t stop talking about how much they’ve both grown while he was away.

Tyson is exhausted from a grueling trip and has been in bed resting all day. He’s happy to be home for sure. I have plenty to update you all on and will do so very soon. However, the reality right now is that we are both feeling exhausted physically, mentally and emotionally. I look at him and my heart breaks. He’s fighting so hard, has been through hell these past 3 1/2 years and he’s tired. Please don’t get me wrong- no one’s giving up over here; it’s just overwhelming sometimes. The important thing is that we keep moving and stay focused.

Tomorrow is a new day. As always, thank you for keeping us in your thoughts and prayers.



Sunday, July 20

Hello friends & family,

Another long overdue update…but I have a really good excuse! Tyson, Calvin and I welcomed our little Abren Marley Fowler on the first day of summer, June 21st. Abren weighed 8lbs 6oz and was 21 1/2″ long. Thanks to our wonderful friends, Gia, Katherine, and Vanessa and our awesome neighbor who helped get Tyson into the car, Tyson and I were able to be together for the entire labor and delivery. The whole experience was really wonderful.

Because I had gone into labor late in the evening, around 11:00, our doctor had the hospital staff bring another bed into the delivery room for Tyson. We actually didn’t sleep while we waited because everything had been moving along so quickly and our doctor suspected I would be able to have the baby within a few hours which would have allowed us to send Tyson back home for some rest. Abren, however, had a different plan and didn’t arrive until 10:09 the following morning. Having Tyson’s support was incredible. And the moments we shared when Abren arrived were so wonderful; I saw Tyson filled with so much love and excitement! It meant the world to me seeing him come to life the way he did. :)

Also, I want to share that the wonderful Greenwich Hospital staff went above and beyond to ensure everything went smoothly for us both. Here is a picture of Tyson and Abren together for the first time. Our nurse helped make this moment happen :)


Calvin came soon after the baby arrived and was so excited and very proud and protective. Here he is pushing his baby brother’s bassinet to my room from the nursery :)


And one more sweet photo of our little guys…


We are so grateful for our parents’ help with taking care of Tyson and Calvin while I was in the hospital and for the following two weeks at home while I recovered. <3

So as I mentioned, the long night and following morning spent in anticipation of little Abren's arrival was very tiring and as a result, took a very large toll on Tyson's condition. In the days following, he had increased difficulty breathing and eating which forced us to rely more on the bi-pap machine and the feeding tube. He felt an exhaustion that didn't seem to subside, so we just made sure he got the rest he needed. This, and his loss of appetite were sparks of concern for us both as we were told by doctors that these two were possible signs of co2 levels rising. Naturally, this felt like a huge step back but we reminded ourselves of two things: 1) we were lucky to have these devices to help him breathe and receive his nourishment and 2) he was still SO much better than he was a few short months ago at Apollo Hospital. That said, we immediately made plans to send him back to Dr. Shroff.

And so, as I write this entry this afternoon, Tyson is fast asleep on the other side of the world in India at Nu-Tech with his parents near by. He arrived last Thursday (July 10) and is doing well. The flight was uneventful and he was even able to sleep this time. He had his bi-pap machine with him so that he would never feel discomfort breathing and I packed 4 cans of his feeding tube formula so that he wouldn't be hungry. Upon their arrival to the hospital, they were greeted with wonderful enthusiasm by the Nu-Tech family and got help settling in. Shortly thereafter, Tyson texted me to let me know he was okay and followed up w a FaceTime call. As you might imagine, I hardly sleep at all while Tyson's on the plane. I track his flight and do lots of praying. So, finally being able to see his smiling face was such an enormous relief! The sisters immediately began the stem cell treatment and gave him some IV fluids to help replenish his system and manage his jet lag. Dr. Shroff said she was happy with Tyson's current state and that one of her big goals for this trip was to get him weaned off the bi pap (or at the very least, begin the process). He was able to lie flat on his back for 2-3 mins the other day without the mask and that's a great improvement! Tyson also says he's gained weight since his arrival and has noticed a nice improvement in his core strength! They're having new braces made for him so he can start taking some steps soon. You might remember the full body braces he had in the very beginning, the rib cage piece connects to the legs and once he's strong enough again, they can be broken down to just leg braces. We didn't have the option to use his old braces bc Tyson lost so much weight while in Apollo for 4 weeks, they just wouldn't fit. So you can probably understand some of the frustration Tyson has…feeling like he has to start all over again. And in a sense, he does, but not all is lost. Those stem cells he received last year are still working hard and growing stronger. We just need to catch up to them :)

Tyson is there this time for 5 wks, returning August 14th. I'm thrilled to report that his attitude/frame of mind have truly been remarkable which is a testament to his strength. He's always smiling when we talk. I'm so proud. I'm convinced his biggest challenge is the mental aspect of this journey; staying the course and remaining focused on the present are what's crucial to his improvement and overall healing process. You know, at first glance (and as awful as this may sound), it's possible that even a joyous occasion such as the birth of our son could potentially be marred by this evil and disgusting Lyme that's paralyzed my husband, leaving him unable to hold or carry his son like a father should. But it's only given him MORE of a reason to stay strong. In my humble opinion, since witnessing his miraculous recovery back in March and April, I am truly not worried about him. If this man can bounce back from the state he was in…there is nothing he cannot do. <3

And finally, I just want to say how grateful we are for his parents and the sacrifices they've made to be with him in my absence. Please pray for his continued strength and progress. I will be sure to share updates as they come in!

With love,
Ann & the boys <3

No matter how dark the moment, love and hope are always possible.
– George Chakiris