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SVTPerformance's Chain of Restaurants
Road Side Pub
A Legacy
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<blockquote data-quote="bgoose99" data-source="post: 16127159" data-attributes="member: 149005"><p>Thank you for sharing your story. I don't often talk about mine, but here goes.</p><p></p><p>In 2008 my ex-wife and I had our second child. Gage was a happy little guy, but at around 5 or 6 weeks, we could tell something wasn't quite right. We took him to the hospital, where they ran a battery of tests. When they ran out of ideas, we got transferred to Vanderbilt in Nashville, TN.</p><p></p><p>After many more doctors, and many more tests, we still weren't getting anywhere. Then finally, an ultrasound discovered the key to getting him diagnosed. He had Wolman's disease, which is an extremely rare storage disease. Back then, the Wikipedia page on Wolman's was about 2 paragraphs long. Let me paraphrase: "Kids diagnosed with this disease rarely make it 1 year. There is no treatment."</p><p></p><p>After scouring medical records, medical journals, etc. the doctors were able to find just a few other cases. But most important to us were the couple of cases that were cured by doing a bone marrow transplant. It was a long shot, but it was our only shot, and we started immediately.</p><p></p><p>After chemo, Gage received his bone marrow transplant. Our long-term goal was to make it to day 100, post-transplant. If he made it there with his body producing its own white blood cells, his immune system should come back and we would have been able to take him home. We stayed in the immuno-suppression unit at Vanderbilt with him until it was safe enough for us to be transferred to the Ronald McDonald house next to the hospital.</p><p></p><p>Those few months were incredibly stressful juggling work away from home, and our three year old daughter. But things started looking up, and all his tests were going the right direction. He was making his own white blood cells, and was generally a very happy little dude.</p><p></p><p>Just a couple of days before day 100, when we were expecting to get to go home for good, he developed an infection in his central line. Because of his compromised immune system, this means the infection spread through his blood and essentially all over his body. After a 10-day stay in the PICU at Vanderbilt, we had to make the decision to take him off of life support. We held him in our arms as he took his last breath.</p><p></p><p>I'd like to think that this experience has helped to make me a better father. </p><p></p><p>This July will mark 10 years since he died.</p><p></p><p>[MEDIA=youtube]PoC3PYiqoc0[/MEDIA]</p></blockquote><p></p>
[QUOTE="bgoose99, post: 16127159, member: 149005"] Thank you for sharing your story. I don't often talk about mine, but here goes. In 2008 my ex-wife and I had our second child. Gage was a happy little guy, but at around 5 or 6 weeks, we could tell something wasn't quite right. We took him to the hospital, where they ran a battery of tests. When they ran out of ideas, we got transferred to Vanderbilt in Nashville, TN. After many more doctors, and many more tests, we still weren't getting anywhere. Then finally, an ultrasound discovered the key to getting him diagnosed. He had Wolman's disease, which is an extremely rare storage disease. Back then, the Wikipedia page on Wolman's was about 2 paragraphs long. Let me paraphrase: "Kids diagnosed with this disease rarely make it 1 year. There is no treatment." After scouring medical records, medical journals, etc. the doctors were able to find just a few other cases. But most important to us were the couple of cases that were cured by doing a bone marrow transplant. It was a long shot, but it was our only shot, and we started immediately. After chemo, Gage received his bone marrow transplant. Our long-term goal was to make it to day 100, post-transplant. If he made it there with his body producing its own white blood cells, his immune system should come back and we would have been able to take him home. We stayed in the immuno-suppression unit at Vanderbilt with him until it was safe enough for us to be transferred to the Ronald McDonald house next to the hospital. Those few months were incredibly stressful juggling work away from home, and our three year old daughter. But things started looking up, and all his tests were going the right direction. He was making his own white blood cells, and was generally a very happy little dude. Just a couple of days before day 100, when we were expecting to get to go home for good, he developed an infection in his central line. Because of his compromised immune system, this means the infection spread through his blood and essentially all over his body. After a 10-day stay in the PICU at Vanderbilt, we had to make the decision to take him off of life support. We held him in our arms as he took his last breath. I'd like to think that this experience has helped to make me a better father. This July will mark 10 years since he died. [MEDIA=youtube]PoC3PYiqoc0[/MEDIA] [/QUOTE]
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