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,
Ann

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.

XO

Ann

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 :)

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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 :)

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And one more sweet photo of our little guys…

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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

Monday, May 12

Good morning, friends and family! And a very happy birthday to TYSON!! I can’t think of a better birthday gift than to be reunited finally with his wife and son :) Tyson is currently on his way home after an arduous 8 weeks in India. His flight landed about an hour ago and I’m told that he did very well for the 14 hour journey! Quite the contrast from his flight to India in March which landed him in ICU for 2 wks and in critical condition.

So to recap for the past two weeks…

Shortly after arriving home, I packed my things and traveled to my mom’s where I was greeted by Calvin the moment I pulled into the driveway. We were both so excited and just hugged each other and gave each other kisses :) We spent the rest of the week cuddling, having delicious meals (thanks, mom!) and I caught up on some much needed rest. Last week, I resumed my normal work schedule. It was so great to be reunited with my RL team. They are all so supportive and make me laugh constantly!

Now, onto the birthday boy…Tyson has continued to improve while at Nu-Tech. Stem cells are truly incredible and to witness their healing miracles is such a unique experience! Over the past two weeks, he has been able to sit in his wheelchair for longer periods of time which meant he needed the mask less and less (his breathing becomes an easier task while he’s seated upright). He received loads of stem cells through various procedures, many of which focused on his hands. While spending the 4 wks at Apollo, his hands almost completely lost all function. He is unable to use the joystick on his wheelchair which is incredibly frustrating for him. That’s his independence and having it taken away is upsetting. However, he was also unable to use his iPad because of the situation with his hands but after a few wks of stem cells and active OT, he’s now able to! Again, that’s important to him bc that’s his connection to the world, the other part of his independence. So, if he’s been able to regain that function, I believe he will soon be able to drive his own wheelchair again. Patience. Hard work. It’ll come.

Tyson still hadn’t eaten anything by the time I left. He told me he was craving split pea soup so once I got home, I sent him two little microwaveable bowls of the soup that I found at Whole Foods. I was SO happy to hear that Tyson was excited and willing to try a bite! He had no trouble swallowing, although he is still terrified that he’ll choke. He commented that it seems easier for him to swallow now than when he was home two months ago. To me, that’s a huge accomplishment; Tyson experienced the most monumental setback in March which nearly took his life and not only has he summoned the strength to overcome all of that , he’s even made improvements beyond recovery. I know it’s small, but I think every positive should be celebrated!

So all in all, Dr. Shroff is very happy with Tyson’s current state and says he looks great! She says that Tyson was very lucky to have survived his battle with the excess Co2’s and continues to comment on his unrelenting strength. It is vital that we stick to a strict schedule of the stem cell therapy in order to give Tyson a chance at recovery. We made the mistake of keeping him home nearly 4 months over the holidays/winter, mostly was because we were waiting to get into a special PT program at Burke that ultimately fell through. Regardless, we learned our lesson and thankfully we’re still in one piece. :)

I’ve been writing this entry over the course of the day. Tyson is home now and in bed. When he and his parents arrived, around 6:30 am, Cal and I ran outside to greet them. I immediately threw Cal up onto Tyson’s lap as he sat in the front seat while his dad assembled his wheelchair. I’ve never seen anything so sweet as their reunion. Cal hugged and kissed him and wished him a happy birthday and let him know he’s 37 today :) Tyson was in awe at how big Calvin had gotten. So very sweet. We sat and visited for a couple of hours and at 9:30, his parents headed off to the train station to catch the 11:15 train upstate. Tyson was ready for a nap and to be quite honest, Calvin and I were, too. I hadn’t slept at all because I was constantly thinking about how he was managing on the flight and so forth. The three of us napped in our bed for 2 hours. After lunch, we went to the park across the street to play some baseball.

It’s so wonderful to have him home and now we are finally all together as a family, as Cal puts it. I am feeling very overwhelmed and exhausted but I am sure things will look better in the morning. Tyson is very weak and cannot be left alone. Having said that, we recognize that we have so much to be grateful for and as I’ve said, although conditions are not ideal and this will continue to be a struggle for us, we cannot ignore how much progress has been made. I feel stronger when I’m with him and I’m certain the feeling is mutual. We will get through this.

I will continue to update as much as possible. On another note, I am 35 wks pregnant and the baby is doing very well and growing just the way he should be!

Also- a very Happy Birthday to my brother, Rob. I love that my hubby and my big brother share a birthday :) Two great guys!!

Thanks for your prayers!

Love to you all,

Ann & Tyson

Saturday, April 26

Hello all-

I am writing a very brief message for now to let you all know that Tyson is doing well and continues to make small improvements each day. What an absolute miracle stem cells are…and when paired with Tyson’s strength and fortitude, it’s no wonder he’s improved so much.

I have just boarded my flight for the U.S., leaving Tyson at Nu-Tech for two more weeks of stem cell treatment and physical/occupational therapy with his parents by his side. It is so painful when Tyson and I have to be apart, but it should be a testament to how well he’s doing and my confidence in his current condition because I would not leave unless I felt he was 100% okay. I am currently 33 weeks pregnant and Tyson and I feel it’s best for me to head home after 5 wks of being in India to get rest and to recuperate.

As soon as I get home, I will travel upstate to my parent’s where Calvin will be waiting for me :) I will write a detailed update about Tyson and his first week back at Nu-Tech once I get settled.

Thank you all for your continued support and prayers.

With love,
Ann

Monday, April 14

Hello all-

Happy Monday! Tyson is still stable and doing quite well. The doctors are impressed with his progress and are making efforts to get us out of here by tomorrow! Tyson had his PICC (peripherally inserted central catheter) Line installed on Saturday in his right arm. It’s similar to the Hickman catheter he had in his chest; tubes go directly to his heart. This was the last issue that needed to be addressed before heading back to Nu-Tech; his feeding is going well, his fever has settled, and now we have a new line for which antibiotics can be given. Tyson hasn’t been on his Lyme meds for the entire 4 wks he’s been here at Apollo Hospital because they don’t believe in Lyme or at the very least, don’t understand it well enough to treat it. That’s okay, perhaps his body needed a break to focus on other pressing issues anyway.

Something Tyson and I want to share with you all: I mentioned a while back about an incredible organization that Tyson and I have developed a relationship with over the past year called the Lyme Research Alliance. This wildly talented and passionate group is dedicated to funding researchers and scientists who work to develop accurate diagnostic testing for Lyme disease and a cure for Chronic Lyme disease. In addition to being an amazing support system for us as well as for SO many other families, the LRA dedicates themselves to promoting awareness, prevention and education about Lyme- they can even help you find Lyme Literate Doctors (which are sadly quite rare). The LRA also serves as an extremely helpful resource for information regarding current medical research.

Every April, they host their largest fundraising gala in Greenwich, CT. In February, Tyson was asked to be a part of a video called “The Faces of Lyme” which was to be shown at the event. A week before Tyson left for India, he, myself, and Calvin headed over to the Hyatt Regency in Greenwich for Tyson’s interview with the director and producer. As Tyson sat in front of the camera, Calvin and I sat together and watched from the sidelines. Tyson explained his story of Lyme disease, how it evaded 5 Lyme tests and how he was misdiagnosed several times. They wanted to know how Lyme disease had affected his life and his family. It was an emotional hour and Tyson did a fantastic job. His voice was raspy, and it was difficult for him to talk, but he told his story as best he could. At the end, everyone thanked Tyson for making the short trip and for participating.

At any rate, I wanted to give a little background before sharing the video with you all. I’m not the most tech savvy person, so if this YouTube link doesn’t work, you can still access it on the LRA’s website, http://www.lymeresearchalliance.org
I encourage you all to visit their website anyway so that you can learn about Lyme and also check out other photos and videos from the event.

After the video was shown, they asked everyone to participate in the Fund-a-Cure by raising their paddles wherever they felt comfortable, ranging from $250-$25,000. The room came alive and in just a few minutes, they raised $240,000! Everyone was so moved by the stories shared in the video. What the one gentleman said really resonated with me and Tyson. To paraphrase, he spoke about how as a man, you have a vision of how you want to be as a father, a husband, and a businessman but Lyme takes all of that away from you. The event went on to raise over $1,000,000

And now, it’s time for me to get some rest for our big move tomorrow :) Thank you all for your continued thoughts and prayers <3

More to come soon!

With love,
Ann & Tyson

Saturday, March 22

Hello friends and family-

I am writing to you all today to ask for your prayers and positive thoughts for Tyson. Tyson arrived in India last Thursday in extremely critical condition. His difficulty breathing was only exacerbated by the flight and elevation changes. Upon arrival to Nu-Tech, he was immediately given 3 bags of IV fluids and some oxygen. When he tried to lay down to sleep, he became unable to breathe almost entirely. They began stem cell injections right away and even after a day or two he attempted a session of physical therapy. The situation got increasingly worse as the hours and days went on and Tyson was unable to sleep and continued to struggle to breathe.

On Sunday, one of Tyson’s doctors at Nu-Tech called to explain their decision to move him to ICU at a larger hospital in New Delhi. They explained that at their facility, they would be unable to care for him at the level that he now required. The plan was to have him stay there for 2-3 days and sort of re-group himself (recover from his exhaustion and jet-lag) and return to Nu-Tech. As jarring as that was to digest, we all accepted it and off they went.

When they arrived at Apollo Hospital (one of the best in Delhi), Tyson and Dontay waited for several hours in the ER while Tyson was hooked up to IV and monitors. He grew increasingly uncomfortable and irritable to the point where he begged Dontay to begin to take all of the devices off of Tyson so they could leave. It wasn’t long after that they were finally given a room. The room was described as a “step down” from ICU and he shared it with 4 other patients.

What they discovered next is crucial: because of Tyson’s inability to breathe properly and efficiently, he has developed a build up of co2’s in his lungs. From what I understand, the excess co2’s can cause fogginess in the brain, slow down breathing altogether and can result in brain damage, coma or death. The normal range is between 35-45 and Tyson’s was coming in at around 115. Tyson’s weakened voice had been reduced to a whisper and eventually only the slurring of words. Tyson (and of course Dontay and Audrey) became very nervous and scared watching Tyson decline at a rapid rate.

Tyson was ordered to use the bi-pap machine, which works to remove the co2’s. As they leave his body, he is able to respond and function better. It’s a very large, uncomfortable and intense machine and Tyson was only able to manage a few minutes at a time (drs had ordered him to use it for several hours at a time). I asked Dr. Shroff to go give Tyson a pep-talk to try to encourage him to use the machine. She called Tyson, calmed him down and after speaking with another doctor, they decided he didn’t need the bi-pap as often bc his levels were decent. That made Tyson happy. She also told him he could come “home” to Nu-Tech the next day. That made Tyson even happier!

Around 2:00 am our time (their following day, aka checkout day) Audrey and dontay had called me bc Tyson’s co2 levels were elevated again to 125 and they weren’t sure what to do since they had been instructed that Tyson didn’t need the machine despite the fact that a few drs there said he did. Dr. Shroff then called me and we had a long talk.

She explained that Tyson needed to stay in ICU for 2-3 more weeks bc that was the amount of time that it would take to correct these out of control co2’s. I said, “Dr. Shroff–this will crush Tyson. He thinks he’s going home..” She explained that if he left, she could almost guarantee he would need to come back and that if anything happened to him at her facility, there wouldn’t be much they could do for him. She wanted Tyson in a facility where he would be monitored around the clock to be safe. She said he was in a critical state where it could go either way and it was best to keep him in ICU. She said she would continue his therapies there and once he was better, he could come “home”! Dr. Shroff asked me to come there as quickly as I could because Tyson needed me. I could already sense that he did, but hearing from her sealed the deal. She asked me to call and explain it to Tyson and help him understand that this was our only option. Naturally, Tyson was not thrilled and fought it for a minute but eventually said “whatever Dr. Shroff wants me to do, I’ll do”. Thank God.

My days are all sort of blending here, but I believe that the next day, 6 am our time, I received a call from Audrey and one of the drs caring for Tyson at Apollo. She told me that Tyson wasn’t responding to anything and was barely breathing. He was making no indication that he was present and could understand what was going on. The doctor asked me what I wanted to do. I listened to our options and gave him permission to intubate him and if that didn’t work, a tracheotomy. I also gave permission for a feeding tube. Basically, do whatever’s necessary to keep him alive.

Feeling completely numb, Audrey and I discussed everything and we were in agreement with the decisions I had made. Through their night, they had him hooked up to the bi-pap and he was able to do 5 hours and 38 minutes out of the 8 hrs prescribed which was outstanding. About an hour after being hooked up, I asked to speak w him, even though I knew he couldn’t respond. I told him how strong he was and how much Calvin and I loved him and needed him. Dontay told me that Tyson’s eyes opened when he heard my voice. A response, finally. Thank you, God.

I scrambled to get my affairs in order to head to India. We are truly, truly blessed with the most incredible friends and family who helped organize my last minute trip, expedite my visa, and help me get food to bring. My dad had come down earlier in the week and thank God for that. I was an absolute zombie and he took care of me and Calvin when I couldn’t function.

Currently, Tyson is stable. He is responding in a timely manner and his co2 level is around 60. He developed a fever so they think he has a chest infection and an ultrasound showed fluid in his lungs. They believe this is due to his shallow breathing and in theory, it should clear up as he improves.

I am about to board my plane in 30 minutes. Calvin is upstate with my parents and knows mommy is on a mission to see daddy and give him kisses. Tyson’s dad is on his way too in the next couple of days, once his visa arrives. Audrey and Dontay have been absolutely incredible in supporting Tyson. The conditions are less than appealing; sleeping in chairs and sometimes going days without sleep. This is a horrifying ordeal to witness and they’re both being very strong. I am 7 months pregnant at this point but my doctor gave me permission to fly. I did a test before I left (just a routine test I knew I’d miss while in was gone) and all is well. I’m 28 wks and will plan to stay with Tyson as long as he needs me, but I cannot stay longer than 35. I joked w him that I know how much he misses me, but this was a really crafty way of getting me to India ;)

I know I’m forgetting things…but basically know that Tyson is fighting. He is absolutely scared but I know he’s not going to give up. That’s not in his nature. Please continue your prayers. We appreciate all of your support.

Love,
Ann