On May 11th 2012, only 2 months after our son Jack was born, Tony was diagnosed with Myelodysplastic Syndrome (which is a form of Leukemia usually found in people over the age of 60). Needless to say, this came as quite a shock. The chances of someone with this form of cancer being under the age is 40 is only 0.2%. We were told survival rates were not great, but reminded that usually people suffering from this particular cancer are much older than Tony. The doctor informed us that Tony needed to be taken to the hospital immediately to start chemo. When we asked how long he would be in the hospital, we were shocked by the answer: it would take at least a month. We knew absolutely nothing about Leukemia, but we learned quickly. We learned that chemo was not fun, but it got the job done. He got a week of an 3 day chemo, once every 6 weeks after that. We were told that he needed to get a bone marrow transplant. So we started the search for a match. There is a 1 in 4 chance that a sibling will be a match for a trasplant, so we began testing his siblings. (He has 5 siblings, but one has a heart condition that makes it so she couldn't donate, so she wasn't tested). None of his siblings were a match, so we turned to the registry. (The Be The Match registry is for people who want to donate). After a bit of waiting, we were informed that he had a perfect match in Germany. We set a date and Tony prepared for what the doctors told him would be a procedure he would never forget. The donor was put under anesthesia and they took bone marrow through a needle in his back 50-100 times. Then they flew the marrow(stem cells) overnight to us here in the states. Tony had to undergo radiation and chemo before his immune system was compromised his body enough to accept the new donor cells. He was still feeling alright on the day of the transplant. They put the stem cells in through the port on his chest, and (because they are smart) they found their way into his bones, and starting producing more bone marrow. The next couple days is when Tony started getting worse. He says it was 50 times worse than he could have ever imagined. After 5 weeks, he was stable enough to come home. In the next couple months, he contracted viral pneumonia, bacterial pneumonia and cdiff. (Because they don't want the new cells to attack his body, they keep his immune system suppressed, so it is a lot easier for him to get sick, and a lot harder for him to get better). But now, a little more than a year after he was diagnosed, he is feeling like a new man. He has more energy, and is able to do a lot more. He is also finally cancer free! He has also loved all this extra time he has been able to spend with Jack while he has been on disability from his work. His doctors think he should be able to go back to work around September. Through this whole adventure we have been so incredibly blessed. We are within 10 minutes of some of the best doctors in the US, and we have the very best ward family anyone could ever ask for. Thanks for the love and support.
Saturday, June 1, 2013
Summary
I did a quick summary for the ward newsletter about Tony's journey the last year. (Very quick summary). I am planning on writing a better/longer one letter. Here it is:
On May 11th 2012, only 2 months after our son Jack was born, Tony was diagnosed with Myelodysplastic Syndrome (which is a form of Leukemia usually found in people over the age of 60). Needless to say, this came as quite a shock. The chances of someone with this form of cancer being under the age is 40 is only 0.2%. We were told survival rates were not great, but reminded that usually people suffering from this particular cancer are much older than Tony. The doctor informed us that Tony needed to be taken to the hospital immediately to start chemo. When we asked how long he would be in the hospital, we were shocked by the answer: it would take at least a month. We knew absolutely nothing about Leukemia, but we learned quickly. We learned that chemo was not fun, but it got the job done. He got a week of an 3 day chemo, once every 6 weeks after that. We were told that he needed to get a bone marrow transplant. So we started the search for a match. There is a 1 in 4 chance that a sibling will be a match for a trasplant, so we began testing his siblings. (He has 5 siblings, but one has a heart condition that makes it so she couldn't donate, so she wasn't tested). None of his siblings were a match, so we turned to the registry. (The Be The Match registry is for people who want to donate). After a bit of waiting, we were informed that he had a perfect match in Germany. We set a date and Tony prepared for what the doctors told him would be a procedure he would never forget. The donor was put under anesthesia and they took bone marrow through a needle in his back 50-100 times. Then they flew the marrow(stem cells) overnight to us here in the states. Tony had to undergo radiation and chemo before his immune system was compromised his body enough to accept the new donor cells. He was still feeling alright on the day of the transplant. They put the stem cells in through the port on his chest, and (because they are smart) they found their way into his bones, and starting producing more bone marrow. The next couple days is when Tony started getting worse. He says it was 50 times worse than he could have ever imagined. After 5 weeks, he was stable enough to come home. In the next couple months, he contracted viral pneumonia, bacterial pneumonia and cdiff. (Because they don't want the new cells to attack his body, they keep his immune system suppressed, so it is a lot easier for him to get sick, and a lot harder for him to get better). But now, a little more than a year after he was diagnosed, he is feeling like a new man. He has more energy, and is able to do a lot more. He is also finally cancer free! He has also loved all this extra time he has been able to spend with Jack while he has been on disability from his work. His doctors think he should be able to go back to work around September. Through this whole adventure we have been so incredibly blessed. We are within 10 minutes of some of the best doctors in the US, and we have the very best ward family anyone could ever ask for. Thanks for the love and support.
On May 11th 2012, only 2 months after our son Jack was born, Tony was diagnosed with Myelodysplastic Syndrome (which is a form of Leukemia usually found in people over the age of 60). Needless to say, this came as quite a shock. The chances of someone with this form of cancer being under the age is 40 is only 0.2%. We were told survival rates were not great, but reminded that usually people suffering from this particular cancer are much older than Tony. The doctor informed us that Tony needed to be taken to the hospital immediately to start chemo. When we asked how long he would be in the hospital, we were shocked by the answer: it would take at least a month. We knew absolutely nothing about Leukemia, but we learned quickly. We learned that chemo was not fun, but it got the job done. He got a week of an 3 day chemo, once every 6 weeks after that. We were told that he needed to get a bone marrow transplant. So we started the search for a match. There is a 1 in 4 chance that a sibling will be a match for a trasplant, so we began testing his siblings. (He has 5 siblings, but one has a heart condition that makes it so she couldn't donate, so she wasn't tested). None of his siblings were a match, so we turned to the registry. (The Be The Match registry is for people who want to donate). After a bit of waiting, we were informed that he had a perfect match in Germany. We set a date and Tony prepared for what the doctors told him would be a procedure he would never forget. The donor was put under anesthesia and they took bone marrow through a needle in his back 50-100 times. Then they flew the marrow(stem cells) overnight to us here in the states. Tony had to undergo radiation and chemo before his immune system was compromised his body enough to accept the new donor cells. He was still feeling alright on the day of the transplant. They put the stem cells in through the port on his chest, and (because they are smart) they found their way into his bones, and starting producing more bone marrow. The next couple days is when Tony started getting worse. He says it was 50 times worse than he could have ever imagined. After 5 weeks, he was stable enough to come home. In the next couple months, he contracted viral pneumonia, bacterial pneumonia and cdiff. (Because they don't want the new cells to attack his body, they keep his immune system suppressed, so it is a lot easier for him to get sick, and a lot harder for him to get better). But now, a little more than a year after he was diagnosed, he is feeling like a new man. He has more energy, and is able to do a lot more. He is also finally cancer free! He has also loved all this extra time he has been able to spend with Jack while he has been on disability from his work. His doctors think he should be able to go back to work around September. Through this whole adventure we have been so incredibly blessed. We are within 10 minutes of some of the best doctors in the US, and we have the very best ward family anyone could ever ask for. Thanks for the love and support.
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No one will ever completely understand the journey you to have been on. Seriously. You are both incredible! I can't tell you how happy we are that Tony is doing so well. Love you guys!
ReplyDeleteI second Brett and Emily's comment! What a harrowing mind boggling experience to live through at such a tender time in your lives. I feel blessed to know you all and I will always remember your journey as an example of pure faith and miraculous results. Thank you for sharing your journey with us!
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