November 29, 2018

Hello friends and family-

I know it’s been a long time since I’ve shared an update on Tyson. I have tried countless times to find a moment to sit and type but each time, I inevitably found myself getting pulled to help one of the boys or Tyson, by a phone call or an email that needed my response, or by my own sheer exhaustion. To give you an idea of how easily I can be distracted by any of these responsibilities, I actually started writing this blog entry back in July. I’ve done my best to round up the highlights from the past several months and I have to warn you- this will be a really long read so please bear with me. Before I do any of that, however, I really want to thank all of our friends and family who’ve continued to support us in so many ways and who’ve sent messages and received delayed responses from our end (aka, me). Thank you for your patience. I read and share every note and every message to Tyson. We thank you for the love. I’ve said this before but it bears repeating- having your support means everything to us. Knowing that Tyson (and the boys and I) have a virtual cheering section in this world truly gives us hope and confidence to keep pressing on.

Tyson and I always remind ourselves of how lucky we are that he is alive and that we have been granted this opportunity to continue to work toward his recovery. We’ve always prided ourselves on our ability to make each day as pleasant and happy as possible for ourselves and our sweet boys (even if it’s all smoke and mirrors at times), but even our happiest days are still clouded with our gut-wrenching reality. This is so tough. Neither of us could have ever predicted that we’d be here with this mess nearly 10 years into our marriage. This illness is entirely unrelenting for both of us. He doesn’t get a break from being sick and as his caregiver, my shift never ends. It is mentally, physically, and emotionally exhausting. I don’t know how else to describe it. My belief in him, his treatment and his recovery have never shifted. I know that it isn’t a matter of “IF” he will get better, it’s simply, “when”. Tyson knows this, too. And although we both know he will get through this, it doesn’t change the fact that very often we both feel so completely worn out and question how we’ll possibly make it another day. We always find a way though. This has been a very long and exhausting journey filled with encouraging highs and devastating lows and while we have been on a high with excitement and filled with relief over the recent approval for the stem cell treatment for Tyson (which arrived just in time to be quite honest), the fact of the matter was that the past seven years had finally caught up with us. It was clear that he and I had very little left after so many years of being beaten down by this illness and unfortunately, despite our best efforts, Tyson had lost a lot of energy and strength in the waiting process and I was losing my own energy and exuberance. So, after we received the stem cell approval, we made it a priority to refocus and decompress.

Once we resumed treatment, we did so very privately together so that we could truly give this our best effort and to preserve our collective energies.  As I mentioned way back in January, we had started noticing improvements right away as a result of the stem cell treatment. This was (and continues to be) such a relief. For the most part, Tyson’s energy levels have improved, but like all of us, he has his good days and bad. We are witnessing slight improvements in his quads and a flicker of movement in his calves and toes. Tyson can also feel tiny movements in his hips. He has gained muscle mass throughout his body. Specifically, we can see muscular regeneration in his hands which were previously so thin and atrophied that we were able to feel each individual bone. Now, you can feel the muscle in the pads of his hands the way it should be. His shoulder muscles, arms, and thighs have all experienced sustained muscle regeneration. For the past year or so, he’s complained of double vision, blurry vision and slow eye movement and now we can see signs of improvement in this department as well. His eye movement is still slow due to muscle weakness but he can track me much better. I can start to see his smile coming back and nothing makes me happier than when I see him trying to smile at me. These are all very encouraging changes! It doesn’t matter how small they are at the moment..it’s happening.

Antibiotics partner with the stem cells and play a critical role in his recovery. They are necessary for the Lyme infection and it is my understanding that the cells are more productive in an “infection free” environment, so it’s imperative that we continue to aggressively treat the Lyme infection. However, the antibiotics go after the good and the bad bacteria which can have severe consequences. We take breaks with his Lyme antibiotics from time to time to allow his body to rest. In March, during one of those breaks, I noticed Tyson’s energy drop significantly. We are so familiar with what his Lyme symptoms look like at this point (extreme lethargy and trouble sleeping, for the most part) so it was easy to determine what the cause was. We spoke with Dr. Horowitz who placed Tyson on a new antibiotic protocol that included intracellular antibiotics to attack his persistent Lyme. The antibiotics were very helpful and facilitated a little comeback for him but the downside was that they made him very sick so we stopped again. Here we are in November dealing with the same situation with the Lyme symptoms torturing him once again. We resumed those same antibiotics very slowly over a week ago and noticed that he is able to tolerate them much better now and the symptoms are subsiding slightly. The analogy I use to describe what the Lyme is like for him is that it’s like a big, heavy blanket that’s smothering him. When antibiotics kill the bacteria, it helps to lift some of that weight off. One of the complicating aspects of treating chronic Lyme that I’ve noticed is that there are so many variables involved and the actual combination of meds (not all meds work for all Lyme patients), the correct timing of the administration of the meds (certain meds help break up the cystic barrier to allow for a second med to come in and attack the actual bacteria), and a million other things can affect their efficacy. Tyson has three co-infections. I know I’ve said he had two in the past but I re-read his labs and there are three that are likely from multiple tick bites and each co-infection needs to be addressed versus a one-size-fits-all approach. Dr. Horowitz has just published two research articles with the details of a new protocol for chronically ill patients like Tyson that has shown great promise and when we speak in a week’s time, Dr. H and I will discuss possibly getting Tyson started up with it. We really need a breakthrough with the antibiotics and hopefully this will work to start knocking the Lyme down. I am also constantly researching ways to strengthen his immune system through foods, vitamins, supplements, etc. There are even a few essential oils with antimicrobial, antiviral, and antibacterial properties that I add to his meds that he says he likes like Oregano, Tumeric, and Basil.

One of the questions that I am asked most frequently is, “How do you two communicate with each other?” Tyson communicates with me with his eyes, specifically his eyebrows. A “yes” is simply an eyebrow raise and a “no” is a furrow of his eyebrows. Thankfully, he and I are very much in synch with each other so I often know what questions to ask and can generally anticipate his needs and concerns. When he’s tired, it becomes very difficult to read him and sometimes I even have to resort to placing my finger on the muscle above his eyebrow to feel a twitch when he is too tired… but overall, this has improved. The best way I can characterize the changes I’m seeing in his physical appearance is to say that he looks HEALTHY and STRONG. In fact, he hasn’t looked this good, physically in a very long time. We just need his energy to match his physical gains. I believe his body is showing us that he IS capable of recovery and I’m reminded of what our neurologist told us a couple of years ago that once we see the slightest bit of improvement, there is no limit to what we can do! This is a mantra I recite to him every single day. That energy and strength I mentioned that was lost in the waiting process for the cells? That will take a long time to recover but the fact is that we are seeing small improvements and we just need to continue to focus on the little details to help support these gains (proper nutrition, vitamins, exercise, meditation, to name a few). The stem cells are obviously helping Tyson recover in ways we were told would never happen for him- he’s regaining muscle that was once so terribly atrophied and he’s regaining movement throughout his body. This process is slow and we have a very long road ahead of us but that’s okay. We can do this.

Tyson continues to work on weaning off of the ventilator. We are breaking it down into small goals and letting him go at his own pace. Maybe it sounds simple enough to wean off of a ventilator but I know for Tyson that there is a lot of fear involved in the process. He remembers taking his last fighting breath before going into cardiac arrest in 2015 and he’s afraid it’ll happen again (even though we’ve all assured him that the ventilator would never allow that to happen). When we first began this process while at Gaylord Hospital, I could see the sheer panic in his eyes and when I asked him why he was so afraid, he spelled out, “I died.”. He’s rightfully terrified from that trauma and so we continue to work on this with the safest and most supportive measures possible. This is yet another example of just how much of his recovery requires his own mental toughness and an extremely encouraging support system, both of which he has in spades.

At the beginning of June, Tyson and I were so excited and honored to welcome Dr. Shroff and her husband to our home for a visit. She and I had spoken on the phone several times a week and at all hours of the day (due to the 9 1/2 hour time difference between Connecticut and India) for over a year while working on the stem cell application. We went through every disappointing roadblock together with this process so being able to give her a huge hug in person and celebrate together was really wonderful. Tyson teared up when he saw her, Calvin thanked her for helping his dad and Abren gave her a hug- it was a very special day for all of us.

During her visit, she showed me some little exercises to do with Tyson that can help us track his improvement. One example is with his leg bent (while lying down), heel to his butt, and on command, with control, dropping his knee to the side into the palm of my hand. Below is a quick video of him doing this with Dr. Shroff.

This is a really big deal! Another way is by placing his hand on his lap and asking him to drop it down to the bed. We work on this daily and I am starting to see him move it very faintly! I can see the flicker in his hands and I know he’s trying. The connections are there, we just need to continue to build on them.

It was really hard to say goodbye to her at the end of the day. She is a phenomenal woman and doctor and we are so grateful that the universe conspired for us to meet her. She continues to check in on us weekly and advises from 7,500 miles away. ❤

I am constantly in awe of how our boys stay strong throughout this. Whether they realize it or not, they’re each finding unique ways to have a special relationship with their dad. This is so important for them and for Tyson. Calvin and Abren are both such sweet and loving little boys and I see the pain in their eyes from time to time. I know that Calvin gets frustrated with what’s happened to his dad so I make sure to check in with him periodically to see that he’s doing okay with everything. I just love that he talks to Tyson every day, knowing Tyson can’t answer, and hangs out with him all the time. He talks about him at school and makes sure his teacher and everyone else knows that his dad used to DUNK in high school 😉 After school, he’ll head into Tyson’s room with a few legos or a notebook to draw in and the two of them watch/listen to t.v together (they love Ellen!). So often, I’ll hear Calvin in Tyson’s room talking incessantly about superheroes. Tyson smiles the entire time.

Abren doesn’t remember a time when Tyson was able to walk or talk or hold him and I can see him growing increasingly frustrated with it all. He’s pretty blunt about it, too. He’ll say things to me like, “Daddy’s like Snoopy. He can’t talk.” And last week, he asked me every single morning when he woke up, “Can daddy talk yet?” or “When is he going to stand up?”. Abie sometimes cries and I explain that daddy’s working on it and we’ll hear his voice again someday. He asks me to pick him up and place him on Tyson’s bed so he can sit with him and run his little trucks up and down Tyson’s legs. Both boys love to help me with Tyson and it is so endearing to see how gentle they are and to watch how they interact with him. I worry about them a lot but what I love is that they come to me when they’re upset or confused. I am comforted, too, knowing that they have a lot of family and friends that they can talk to anytime as well. I cannot imagine being in their little shoes and seeing the world from their eyes.

This picture is so sweet. It was one of those moments when we were all hanging out with Tyson. I was organizing his med closet and before I knew it, Abren had pulled up a chair next to Tyson’s bed, grabbed a book, and “read” Tyson a story. In the middle of the story, I overheard Abren ask Tyson, “Are you enjoying this, daddy?” Tyson smiled and Abie continued. ❤

So, on to some BIG news for 2018! When I lost my job in June of 2016, it was abundantly clear to me and Tyson that we would no longer be able to sustain a life in Connecticut. We were barely getting by as it was. This was crushing to us because it was yet one more thing that we had worked really hard for that was taken from us as a result of his illness. We loved Greenwich and had planned on staying there for many years. Anyway, we began discussing a move and to be honest, it took a little convincing to fully get Tyson on board. He wanted to stay and I understand why. It was comfortable in Greenwich and sometimes change is scary. But once we started talking about the towns in which we would want to live and raise the boys, his excitement grew. In the past, people wondered why we didn’t rush home the moment he got sick. Simply put, we felt we needed to be in the CT/NYC area to be closer to his doctors and treatment facilities, not to mention the fact that I had a great job that I was trying to maintain that carried the insurance and the paycheck we needed to care for Tyson. Also, most significant was the fact that we were still working on getting the approval from the FDA for the stem cell treatment. We couldn’t leave without the treatment approval being finalized. For a long time, Tyson and I sort of looked at the idea of moving home as “giving up” or “giving in”. Once we obtained the stem cell approval, our outlook changed. We were now able to focus on finding a place that we could afford that also contributed to Tyson’s recovery. We were waiting for the timing to be right and eventually it was.

There was a whole list of criteria that Tyson and I created for our search. It was extremely important to us to be near the doctor whom we wanted to care for Tyson, and to be near family and friends. It was important to find a home that we could afford that would allow for Tyson to be able to hang out with me and the kids in the kitchen and dining room and living room and one that hopefully had a nice yard for the boys to play where Tyson and I could sit and watch. I found an incredible realtor who really listened to what our needs were, was extremely knowledgable and equally patient with us, and who understood our circumstances (traveling 4 hours one-way for an Open House was not in the cards since I couldn’t leave Tyson for long periods of time). So, she and my mom went to several showings and Face-Timed me and Tyson for the walk-thrus. After nearly a year of searching, failed bid attempts, and getting our hopes up, we finally found THE most perfect home in the exact town and neighborhood we wanted.

It was extremely difficult for us to say goodbye to our Greenwich family. Let me tell you about these amazing people; they were friends, awesome neighbors, former co-workers, babysitters who became godmothers to our boys, our daycare director who was our “mom” away from home, and amazing parents of our boys’ buddies who all leaped at the chance to help us at every turn. They took our boys to birthday parties (knowing that Tyson and I were unable), they brought over medicine/milk/food whatever we needed, whenever we needed it and at all hours of the day or night, they took Cal to school for me when he missed the bus on occasion, hosted several fundraisers on our behalf, drove Cal to baseball practice for me when I couldn’t find a nurse to stay with Tyson, ran the NYC marathon in Tyson’s honor (!!), they sat and talked with me to make sure I was okay and visited with Tyson offering words of encouragement, and I’m telling you…ALL of this has left an indescribable mark on the four of us forever. Thank you for wrapping us in your arms and treating us like family in such a critical time of our lives. ❤

And so, with the help from family and friends, I packed up our things and began the moving process. As with a lot of significant life events, this move happened so quickly. We put an offer on the house at the end of May and just a few short weeks later, Calvin had wrapped up 1st grade in Greenwich and we were out by the end of June. Transporting Tyson upstate was really the biggest logistical challenge. It’s a four hour drive and I hated the thought of him sitting in his wheelchair in the back of a van or being on a stretcher for the entire trip. I knew he’d be extremely uncomfortable and unhappy. I wasn’t really sure what to do so I floated the idea to him of having him ride in the front seat of our car like the old days. He immediately perked up with excitement. He hadn’t been outside in two years, let alone in a car for a scenic drive. I had slide-board transferred him for years when he first loss the use of his legs and it was pretty easy, despite him being 6’3”/200lbs. Trying to do this with a feeding tube and a ventilator now was daunting but we had so much wonderful help, it ended up being a breeze! The moving company had come the day before, so the day of the move, about five of us worked together and loaded Tyson into the front seat of our car. His brother drove and I sat behind Tyson to care for him and his vent. We had another car with our “little sisters”, Katherine and Vanessa who were transporting the boys, and Tyson’s best friend Matt in another car with a trailer transporting Tyson’s medical equipment, and finally, my dad in his truck carrying everything else! It was a wonderful caravan.

(Calvin, Katherine, Tyson, Vanessa, and Abren at my mom’s house)

My mom graciously welcomed the four of us to her home for the summer, as we weren’t scheduled to close on the house until late August. Once we were all settled in, Tyson, with tears in his eyes, spelled out “thank you” to her. He was so happy and comfortable and that made my heart swell. The summer months were really the quality respite time we all needed; the boys played golf, went camping with my dad and his wife, rode their bikes, and went swimming while Tyson and I enjoyed the peaceful atmosphere and continued to focus on his therapies together.

We finally moved into our new house on October 8th with the help of his brother and mine and I cannot put into words how happy the four of us are. Each of us now have our own room (I shared with the boys for a few years once Tyson required a hospital bed and medical equipment that took over our room). I wanted Tyson to have a room with lots of sunlight that was big enough for all four of us to hang out in and his new room has all of that. Now, rather than shooing the boys out of the room when I need space to take care of Tyson, they can stay in there and watch t.v. while I work. These are the little things that are actually very important to us.

We’ve been so warmly welcomed “back” to my hometown community regardless of the fact that only a handful of people have ever actually met Tyson before. It’s amazing how kind and gracious people can be. The boys love their new school, their new friends, and their new teachers. Abren’s classroom is three doors down from his big brother’s and my favorite part of the day is watching them hop off the bus together. They are so happy. We celebrated Thanksgiving with both of our families which was really nice and we look forward to spending Christmas together, too. The boys have really enjoyed being reunited with their aunts, uncles, cousins, and grandparents. For me and Tyson, seeing the boys smiling and having fun with everyone means a lot. Also, I can do a lot on my own but having our families nearby to help me out with with yard work, grocery shopping, moving furniture, and all of the things Tyson would be doing with me if he could is so helpful. We are so happy to be home. A lot of hard work from a lot of people was poured into the process of getting us here and we are so grateful. It’s funny to think back to before Tyson was sick when he and I would daydream together about having a home upstate and how wonderful it would be. We couldn’t figure out how we’d ever be able to do it because our jobs were in NYC and neither of us could envision a scenario in which we’d voluntarily leave our incredible careers. They say to focus on what you want and leave the “how” up to the universe. This is probably a good example of that 🙂

Tyson’s ventilator company and IV/enteral supply company both have offices here in Upstate NY which made the transition smooth for us, thankfully. Our team of doctors has remained the same, thankfully, and we’ve added one more amazing doctor to the group which we’re really excited about. Our current mission is to link up with a physical therapist in the area who is open to working with us and until then, I’ll continue to do his PT every day with him and his brothers who are only an hour away will also come help whenever they can <3.

Sometimes I feel as though we’ve already lived through a lifetime’s worth of struggle. We’ve been in and out of doctor’s offices begging and searching for answers, trying out every medication, supplement, treatment protocol we could get our hands on…the tears, the pep talks, the endless piles of books and research, getting knocked down repeatedly and fighting to get back up…we are so drained. We have been together for 13 years and he has been sick from this disease for more years of our relationship than he has been well. That’s a painful fact for us to accept. It’s even more painful if we stop and think about all the joys in life that we’re missing out on while we fight to get him healthy again. We’ve lost count of the things we have had taken from us but we never stop talking about our plans for the future or the fact that having an immense amount of gratitude for every single day that we’re given to actually WORK on this is more important than the sadness we carry. As for right now, we are continuing this journey feeling (slightly) more rested, more determined, more supported, and very loved.

xo

7 thoughts on “November 29, 2018

  1. Your positive drive & forever love are inspiring! Praying & expecting to God! So glad you’re back home!
    You’ve got this covered!
    God Bless You All!!

  2. You are forever in my thoughts and prayers. I’m sending you out lots of love, encouragement, positive energy and praise for yours and Tyson’s stick-to-it-ness. May God and the Angels continue to watch over your family.

    Wilma Goodman

    WJMGgm

    >

  3. Oh…my …thank you for the update…I cried through the whole thing. You are so strong and beautiful , courageous and inspiring as is Tyson and your Sweet Boys! Please call on us at any time…we would love to be of any help you might need! Wishing you a peaceful holiday season …we love you and think of you often and pray for the wonderful outcomes you are working so hard for❤️ God Bless you all…

  4. My twin brother passed away from Lyme disease at 31 years old. He motor neuron symptoms as well which was caused by the Lyme bacteria. Even though I don’t know you guys, I do know first hand the struggle you’re in. I admire the strong people that you are and you’re never giving up mentality. Most doctors don’t believe Lyme disease could cause motor neuron disease which makes the battle that much more difficult.
    You guys are always in my thoughts and prayers. Keep fighting and being strong. I enjoy reading your blog and I hope to hear more good news soon.
    Much love to you and your family.

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