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 ❤

More to come soon!

With love,
Ann & Tyson

4 thoughts on “Monday, April 14

  1. Ann & Tyson,
    I knew Tyson for a brief time when he had just come of age.. I didn’t know him very well but I spent countless nights just having fun at our pub in canjo. Tyson, you were always so fun and nice I knew for sure that you are special and you were definitely going places .. Ann, I don’t know you except from this blog but I want you to know that I have read every word and it is well written and I appreciate that you are sharing your journey.. I have learned about Lyme in the last year because I got sick and suspected Lyme .. I feel a great deal of empathy for you both and want you both to know how dignified you come across .. My thoughts and prayers go out to you and your family .. God bless you both for sharing your struggle with us …
    MM

  2. Praying for continued strength and endurance for all of you. Prayer warriors everywhere are lifting you up. May God grant patience, healing, and a special measure of His grace as you travel this difficult journey! Pastor Ken and Diane Prol – Wisconsin (formerly Canajoharie)

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