Beskow's Fight for Family and Life

Hi, my name is Jon Beskow, and this is my story.....

The Beginning:

My story starts in 1982, the year I was born. I was born with a rare condition called exstrophy of the bladder. In normal terms I was born with my bladder on the outside of my body. Within an hour of my birth in Abilene, Texas I was care flighted to Cook's Children's Hospital in Fort Worth to undergo what would be the first of over 50 surgeries I have had in my life, the first being when I was two days old and weighed 5lbs. Most of these surgeries have been reconstructive in nature to reconstruct everything from my bladder to rebuilding my ureter's to connect my bladder to my kidney's. My own mother did not even get to hold me until 7 weeks after my birth. Because I was born over a month pre mature, the doctor's had to put me in traction to allow me to heal, but my dad left my mother's side and came to the hospital to take care of his son.

My life growing up:

It seemed to me that my life growing up was as normal as it could have been, my parents never treated me like a sick kid or different than my sister. Often the phrase my mom would say to me or my sister was, "you will live" when we had small or minor issues. However, my summers were a little different while we did have a normal family vacation to Galveston Island. However my mom took me to Boston Children's Hospital where we stayed sometimes for a month or more having surgeries and other procedures. What didn't kill me made me stronger and I exceeded expectations that was put on my life or what would be possible in my life. To all on lookers unless you knew my story you might never know that I was any different than other kids. We appeared to be a normal family of four.

Later in Life:

As life went on I had my own dreams and while attending college I met my future wife Tina. We fell in love hard, and she accepted me with all of my problems. She let me know that she loved me no matter what. That included the fact that I thought I would never be able to have father children. In 2014 a miracle came to pass by the means of a fertility doctor in New Orleans where we lived at the time. On our first try we had our baby girl Emma Faye and our family was complete. As far as my health went I still had the occasional hospital visit. When Emma was a baby Tina would have to drop me in pain at the emergency room because she had a small child to take care of.

Life Continues:

Life continued much the same as this over the years, in 2023 Emma turned 9 and Tina and myself celebrated our 16th year of marriage. However, over the years the infections were a lot frequent. Some years I ended up in the emergency room every other month, sometimes with a kidney or bladder infection that was bad enough to hospitalize me for a week or more on IV antibiotics. Over the years I developed chronic pain from kidney spasms as a result of scar tissue on the kidney's slowly decreasing my overall kidney function.

Then everything changed:

In late 2023 our lives would change forever, but not in the way you might be thinking. My wife Tina who turned 40 in 2023 was checking things off her health to do list, and went to go get her first mammogram done. What should have been a normal check off the box turned into something else entirely. We found out a week before Halloween that Tina had breast cancer. As we discussed her surgery date which turned out to be the day before Thanksgiving. She asked me to make one promise. "Jon she said, until I am done with this I need you to promise me that you wont get sick", and promise her I did.

A promise I couldn't keep:

The week before Thanksgiving is when things started veering off path. The whole weekend I was lethargic, often falling asleep in the middle of doing things or watching shows. When Tina or Emma woke me I would utter words to me that made sense but that was truly gibberish coming out of my mouth. Then the tremors and random twitch's began as I would randomly drop things like my water glass or phone without meaning too. By Monday it had gotten so bad I could not log into my work computer and Tina was convinced I was having a stroke.

The Verdict:

At the emergency room, while Emma was in school we would come to find out the truth. After running tests on me the ER doctor came back and said Jon is not having a stroke, his kidneys have failed! I was then transferred to an ICU unit at another larger hospital here in Kyle and was found to be known as Acidotic, meaning I had too much acid in my blood that was causing all my other symptoms because my kidneys were not filtering correctly. I was given high doses of medicines to try and normalize my blood chemistry. I stayed in the ICU for 4 days, and at times there was doubt if I would come out of the shock my body was in.

Where I am now:

After getting out of the ICU I had bi-lateral nephrostomy tubes inserted in my back to try and jump start my kidneys. On the Friday before Thanksgiving there was not a lot of hope from the doctors for my survival. I was told if the gas in my kidneys didn't go down and my numbers did not improve my kidneys would have to be removed. Through prayers another miracle happened in my life and the nephrostomy tubes stabilized me enough so I didn't have to lose my kidneys. I was sent home with them and was told I would keep them until I could start dialysis. On January 5th, 2024 I had my first surgery to put a fistula in my left arm to give me access for dialysis. On the 30th I will have a follow up with that doctor and find out when my second surgery will be and when my fistula will be mature or healed enough for me to start dialysis.

Life goes on:

Currently life goes on, the photo above is Emma and me outside about to start work on her pinewood derby car for scouts. On the 24th of January Tina finished her radiation! I push on for my family waiting for the next doctor appointment and for dialysis to begin. We try to keep Emma's routine as normal as possible, but it's hard now considering I currently have to use a walker due to the damage the acid did to my muscles. My parents and Tina turned our dinning room into a dialysis room. It is where I sleep when I do not have the energy to make it upstairs after a long day. I still am working full time from home, and my company has been very understanding letting me work a schedule that lets me fit in any doctor appointments I have. So we continue like this, and I am still wrapping my head around the fact that life will never be the same. Part of me feels I stopped living it for myself in November but I keep on going for Tina and Emma, as they are my rocks. In spite of everything we are still very blessed.

What the funds will be used for:

We have always struggled with medical bills but now we are overwhelmed. The funds raised will be used to pay doctor bills and future costs of dialysis at home. We are currently not sure what the total cost of this will be. The medications and co-pays it is adding up quickly. Even though Tina and I both are working full time medical costs are starting to squeeze us financially. We are proud people and it is hard for us to ask for help. However currently we are running out of options. If you can not donate please share my story if you at least find it inspirational and we thank you for your thoughts and prayers. I will give updates as we can. Down below is a video of the kiddo I keep fighting for daily.