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Phone: 425-941-8760

Friday, November 19, 2004 3:57 PM CST

Charvat Story

Remember the year 2001? It was the year that loads of people lost their jobs, following the "economic downturn". We remember it rather poignantly because our golf green business was suffering along with the rest of the country's economy. We endured an entire year of unemployment-like conditions, only without the governmental unemployment checks. We had diligently saved for a rainy day, though, and made it through the whole year by cutting back and slowly eating our way through our savings account. I was looking for a job for the first time in around 20 years and it wasn't going well because everyone else was looking for work, too. It was, at the time, stressful for us. In retrospect it was a picnic, a day in the sun, a walk in the park.

By the summer of the following year, 2002, Glenn finally had a couple of projects. Yay! We had income. It was a novel thing and so wonderful. We had a great summer until August first, the Day Our Lives Changed Forever.

Glenn, at the age of 48, had a major heart attack. I got the call that everyone dreads, from a hospital worker telling me I needed to get down to Tacoma General Hospital (an hour's drive under good road conditions, impossible drive in traffic, which is nearly all the time). I couldn't talk with him because he was having a "cardiac event". She didn't have any information for me other than I needed to get down there.

Watching my husband suffer over the next 2 weeks of one after another complication was agony in a way no one can accurately describe. He got better in spite of the things that went wrong (was he unlucky or was Tacoma General a bad hospital? I don't know but it wasn't great for Glenn). The complications included a second heart attack caused by a cath procedure, a retro peritoneal bleed during which he lost about 3/4 of his total blood volume, staff sepsis and then endocarditis--he definitely should have died many times over.

But he is young and very strong and he made it. Whew! We were preparing for a Very Special Christmas that year. Glenn was going on walks every day and finally recuperating--did I mention that he had to have lithotripsy for kidney stones? Our only child, (then) eighteen-year-old Kyle, had been an amazing source of support for me during those months. From the time he flew home from a baseball tournament in Oklahoma until the end of his first quarter at college, he was solicitous and caring, including doing anything he could to keep our business open during his dad's illness. He was on track to make the Dean's List in his first quarter and he was a pledge at Theta Chi Fraternity, no easy task even without the added family stress.

Early December, I was baking Christmas cookies when he called and said he didn't feel good. He said his head hurt so much he wasn't sure he could drive the rest of the way home from campus. I told him to pull over and we would come get him but he insisted he would make it home. He did, but he was having vision problems. We all thought it might be the flu......

There were 2 weeks of nightmare headaches and accumulating double vision. He took his finals with a hand over one eye. We took him to our doctor twice during that time and thought he must have a really bad sinus infection. We wound up in emergency at Evergreen Hospital and when the doctor came to the room with the CT scan results I knew he was going to say something bad. I remember thinking, "Oh man, he's going to say Kyle has meningitis or something." How I wish it had been something so simple and so curable.

It was a 6 cm tumor deep in his center brain, in his Thalamus. Inoperable. Little hope. Maybe he had 6 weeks to live, we were told. That was a bad night. Stunned. We were relieved when we finally went numb. I had never known a person could cry so violently. I had learned (from Glenn's time in the hospital) how to control my tears until I left Kyle's room, but he knew what I was going to do as I walked out of the room. The ER doctor put his arms around me saying, "I'm sorry, I'm sorry." We took him to Overlake Hospital for shunt surgery the next day. When he woke up after that surgery his headaches were mercifully gone and he felt "great". The entire time he was joking, saying things like, "Maybe I can blow the tumor out of my nose."

The next step was a biopsy. I had a very bad feeling about the 3 in 100 chance of hemorrhage but didn't trust my own inner voice and allowed the surgery. He did hemorrhage but we were fortunate (I do not use the word, "lucky") because the hemorrhage was contained within the tumor. He was still critical but alive and undamaged as far as we could tell, i.e., no stroke.

That was the day Glenn went down with congestive heart failure. Apparently the endocarditis had eaten a hole in his aortic valve and he got short of breath as we sat in Kyle's ICU room. I got him into emergency at the same hospital, University of Washington Medical Center (UWMC), which is where we had Kyle's biopsy performed. That turned out to be a great place for both of them.

I spent the next couple of days running, and I do mean running, between their rooms. I had to take 2 elevators to get from one to the other. I kept trying to catch the doctors on their rounds. One of the worst days was when I had to leave my husband, Glenn, at the hospital and bring Kyle home because he was released first. Thank goodness Glenn's parents live near UWMC and were able to bring him home a couple of days after that.

Kyle was recuperating from brain surgery and Glenn was on new meds. He consulted with a cardiac surgeon, Dr. Ed Verrier (who we highly recommend!) and was told he needed to be approved for a heart transplant before they would even open him up, he was such a mess in there. By this time I had toughened up and each time a new crises would arise I would just think, "Fine, bring it. What else have you got?" I took Glenn to many appointments, to be sure all of his other organs worked so he could get on the list for a transplant.

It turned out that he didn't need one, Dr. Verrier is a genius and with the aid of CoQ10 (if you don't know about this supplement, you owe it to yourself to look into it, his surgeons were amazed that his heart was actually better than the nuclear angiogram had shown just 6 weeks previous to surgery), he was able to repair the hole in Glenn's heart! He didn't need a replacement valve. And eventually his mitral valve closed up and they now think his heart has shrunk from it's enlarged size. He is the Poster Child for cardiac disease.

While I was running Glenn to various appointments, I was also accompanying Kyle to his radiation treatments. He went through the full 6 weeks. It is a grueling experience to go through radiation to the brain but his age and athletic condition seemed to help. Kyle has had a never-wavering commitment to fitness and he would run, even after radiation treatment. When he couldn't run any more he would go on walks around the neighborhood. When he couldn't do that any more he would run up and down the stairs, then walk up & down the stairs. When he wasn't able to do that any longer he would at least go out to the back deck and breath deeply a few times. When it became all he could do to get to the bathroom & back, he would sit in his chair and do isometric exercises. You just have to look on in admiration during that time. He was taking steroids for swelling in his brain so he was bald, swollen, puffy, and full of acne. He looked beautiful to me.

His last day of radiation coincided with Glenn's open heart surgery day, which was also our 23rd wedding anniversary. I called on a dear friend to bring Kyle dinner and stay with him while I was at the hospital with Glenn. It was frustrating because I could not become 2 people at once. Somehow I remained focused. Our friends held a fundraiser for us and got us through those months financially. That eased a lot of the stress for both Glenn and I, and Kyle too.

Kyle began chemo the next month. Luckily there was a brand new chemotherapy for brain cancer that was in capsule form, so he could take it at home. He did very well and by October, 2003, we finally got the word we had been waiting for, his tumor was shrinking! The world seemed brighter, we hoped it would keep shrinking down to nothing and he could go on with his life. That was when he allowed himself to fall in love with a wonderful girl, Megan. His fraternity brothers were an amazing source of support and distraction for him. Glenn got better and better until he could work again with no restrictions and of all things, business picked up.

For nearly a year we felt that our lives had turned a giant corner and things would continue to go well. Oddly, I had a premonition around July of 2004 that I needed to resume my research on brain cancer to have options in case things went the other way for Kyle. Also, as anyone in business knows, for some reason business all but dropped off in the month of July of this year. Ours did too.

Listening to my instincts, I read some books and made a file, for "just in case". In October, 2004, we heard the words we did not want to hear, Kyle's tumor was growing again and they were immediately taking him off chemotherapy. His wonderful radiologist, Dr. James Douglas, performed Gamma Knife Surgery on October 22nd.

Our next step is to fly to Houston, Texas. We are going to the Burzynski Clinic, where over 200 people have had inoperable, incurable, and fatal brain tumors reversed. This is an FDA approved, phase 2 clinical trial and we are optimistic. Kyle is managing to stay in school although we don't know how being gone for 3 weeks will affect his academics. The most important thing is to save his life and beat back an unbeatable cancer. I truly believe that if anyone can do it, he will.

**NOTE: We have recently established The Kyle Charvat Foundation, to provide financial help to those battleling a life-threatening illness to salute the courage displayed by Kyle his entire life. You can read more about the foundation at the link below, and you are encouraged to participate using the PayPal button above.

That is the end of this story to date. Thank you for reading. Thank you, and please sign our guestbook!

~Sheryl Charvat

*****Please note: If you want to make a contribution to Caringbridge, the website and NOT to the Kyle Charvat Foundation, you can scroll down and click on the box below or click above on "make a tribute donation". These funds do NOT go to the Kyle Charvat Foundation but to the organization hosting this website.*****

Journal

Monday, January 17, 2011 2:01 AM CST

One. Half. Decade.
How have I survived 5 years without my son on this planet with me? No idea.
At this exact moment, 5 years ago, I was saying good-night to Kyle. I knew he was going and I looked forward to the end of his suffering, which was so awful.
I wish I could say I was better but I still miss him SO MUCH.

Links:

http://www.kylecharvatfoundation.com   Help young adults facing life-threatening illness with their medical bills