As days and weeks go on and people ask how Daniel is it gets easier and easier to say he is well with confidence. With each passing doctors visit every week and every routine blood test his numbers continue to climb and he physically seems to look better every day. He is even gaining some weight if you can believe that?
Since I last posted we had returned from Israel, been keeping in contact with our new friend Pablo (Daniel’s donor) and even been on our first family vacation with my whole side of the family in many years. Although there was some chaos with the vacation that was not expected how could you complain when you are in Mexico. We had gone to the resort we were at just over two years ago where I went alone with the boys before my surgery and where Daniel was just recovering from his months in his awful hip brace (for what we thought was osteomyelitis). That vacation was so nice and relaxing and now that I look back I remember how much Daniel slept and think about woulda, coulda, shouldas. And I have to stop myself. That was April of 2014. This year was a celebration of so much recovery. We were there rejoicing in my sister’s complete recovery of breast cancer from 2014 and now Daniel’s. I spent much of the vacation quietly in my thoughts of what had happened in the past years and what we have squeezed into our celebration period since being able to travel again. Las Vegas, Israel and now Mexico and I was internally overwhelmed. I wanted Daniel to be able to do what he did when we were there before but still feared what he should and could safely do. Eating was my main worry being in Mexico but Daniel knows his stuff and took control of that. As far as activities unfortunately it wasn’t everything I had wanted for him but for him it was fine. He kept reminding me he was on vacation and really wanted to just relax and sleep, which then became the balance of the teenager on winter break versus wasting an entire vacation letting him sleep it away. There was a reason he was sleeping last time back in 2014, this time I knew it was just because he was being a lazy butt. All and all we got to relax and play in even amounts. Our highlights were Daniel and I along with my mom in tow getting to snorkel together in Cozumel as an unexpected surprise when we were relocated to another hotel due to overbooking issues. Making the best of a situation has become our strong suit. And then seeing Daniel back up on the flowrider surfing thing brought about some pretty strong emotions knowing the physicality of it. Granted he only did it once, not like the days and days he did it last time. Now this brings me to the best part. The waverunners. Just the four of us (when the rest of the family was busy in another activity) had a chance to grab some waverunners on a crystal clear, glorious day and shred. While slo-poke Rob was in the back enjoying the view of a sea turtle (supposedly). Daniel and I were racing circles around each other catching each others waves. Matthew was off and way ahead with the guide but Daniel and I were daring each other to no end and as fun as it was, the two of us paid for it FOR DAYS!!! And I am not talking a little sore people. I am talking, I need help pulling up my pants and brushing my hair sore. Was it worth it- Hell yah! It was totally worth it and we would do it again in a second…when I am able to lift my arms. We celebrated Daniel’s birthday with the whole family which was nice as well.
Another meaning full moment was one when my dad stood up at a meal to make one of his typical speeches but this time it was part two of one that was started last year. Part one was for my sister, part two was for Daniel. Back when my sister had her diagnosis and started chemotherapy was very close t when Daniel was diagnosed. My niece Maleah made my dad two string bracelets that he has worn. A pink one for my sister (breast cancer) and a green and gold one for Daniel ( green bay packers of course). Last year my sister had finished her treatment and was well and recovered at her daughter’s Bat Mitzvah and made a big speech and ceremoniously cut it off. It was beautiful and meaningful and painful at the same time because I knew that that stupid, dirty old green and gold one that had been there for so long wasn’t ready to come off. But this year. This year is our year and although my mother I am sure wishes it was my Dad’s long hair, pony tail being cut off, it was that green and gold bracelet’s turn to go. Unfortunately, it was not a quiet moment with too much going on around us and I don’t think that Daniel especially was able to appreciate what the sentiment was that was intended and how special that moment really should have been, it was still special. Again, after 19 months of wear it was enough and I have confidence that we are done with it and that cut of the bracelet was significant. I can’t thank my parents enough for this vacation. It was nice to see my sisters and to see my niece and nephew and how much they have grown. It was nice to see the cousins together although it was strange to see such a large age gap and how that really does make a difference in how they interact. It makes me sad that they haven’t gotten to grow up closer together or see each other more often over the years and that next time we do see them my kids will be off to college. WoW.
Getting back home was nice although nothing beats a beach in the middle of winter. Daniel couldn’t wait for his class to get back from Israel and that was all he wanted for his birthday was to have his friends back.
This past Tuesday he had his monthly bone marrow aspirate and MRI and the trooper he is woke up and went straight into his radio show. Playoff season if heating up and there is no time for rest at this point. We have gotten one test result back which is his MRD which is the minimal residual disease and it shows that there is no evidence of leukemia in his cells. This is a big test results. The rest should come next week that will tell us what is the ration of donor cells to his remaining cells and we will just go from there. In the meantime, I am having no issues with confidently saying Daniel is doing GREAT!
Since I last posted we had returned from Israel, been keeping in contact with our new friend Pablo (Daniel’s donor) and even been on our first family vacation with my whole side of the family in many years. Although there was some chaos with the vacation that was not expected how could you complain when you are in Mexico. We had gone to the resort we were at just over two years ago where I went alone with the boys before my surgery and where Daniel was just recovering from his months in his awful hip brace (for what we thought was osteomyelitis). That vacation was so nice and relaxing and now that I look back I remember how much Daniel slept and think about woulda, coulda, shouldas. And I have to stop myself. That was April of 2014. This year was a celebration of so much recovery. We were there rejoicing in my sister’s complete recovery of breast cancer from 2014 and now Daniel’s. I spent much of the vacation quietly in my thoughts of what had happened in the past years and what we have squeezed into our celebration period since being able to travel again. Las Vegas, Israel and now Mexico and I was internally overwhelmed. I wanted Daniel to be able to do what he did when we were there before but still feared what he should and could safely do. Eating was my main worry being in Mexico but Daniel knows his stuff and took control of that. As far as activities unfortunately it wasn’t everything I had wanted for him but for him it was fine. He kept reminding me he was on vacation and really wanted to just relax and sleep, which then became the balance of the teenager on winter break versus wasting an entire vacation letting him sleep it away. There was a reason he was sleeping last time back in 2014, this time I knew it was just because he was being a lazy butt. All and all we got to relax and play in even amounts. Our highlights were Daniel and I along with my mom in tow getting to snorkel together in Cozumel as an unexpected surprise when we were relocated to another hotel due to overbooking issues. Making the best of a situation has become our strong suit. And then seeing Daniel back up on the flowrider surfing thing brought about some pretty strong emotions knowing the physicality of it. Granted he only did it once, not like the days and days he did it last time. Now this brings me to the best part. The waverunners. Just the four of us (when the rest of the family was busy in another activity) had a chance to grab some waverunners on a crystal clear, glorious day and shred. While slo-poke Rob was in the back enjoying the view of a sea turtle (supposedly). Daniel and I were racing circles around each other catching each others waves. Matthew was off and way ahead with the guide but Daniel and I were daring each other to no end and as fun as it was, the two of us paid for it FOR DAYS!!! And I am not talking a little sore people. I am talking, I need help pulling up my pants and brushing my hair sore. Was it worth it- Hell yah! It was totally worth it and we would do it again in a second…when I am able to lift my arms. We celebrated Daniel’s birthday with the whole family which was nice as well.
Another meaning full moment was one when my dad stood up at a meal to make one of his typical speeches but this time it was part two of one that was started last year. Part one was for my sister, part two was for Daniel. Back when my sister had her diagnosis and started chemotherapy was very close t when Daniel was diagnosed. My niece Maleah made my dad two string bracelets that he has worn. A pink one for my sister (breast cancer) and a green and gold one for Daniel ( green bay packers of course). Last year my sister had finished her treatment and was well and recovered at her daughter’s Bat Mitzvah and made a big speech and ceremoniously cut it off. It was beautiful and meaningful and painful at the same time because I knew that that stupid, dirty old green and gold one that had been there for so long wasn’t ready to come off. But this year. This year is our year and although my mother I am sure wishes it was my Dad’s long hair, pony tail being cut off, it was that green and gold bracelet’s turn to go. Unfortunately, it was not a quiet moment with too much going on around us and I don’t think that Daniel especially was able to appreciate what the sentiment was that was intended and how special that moment really should have been, it was still special. Again, after 19 months of wear it was enough and I have confidence that we are done with it and that cut of the bracelet was significant. I can’t thank my parents enough for this vacation. It was nice to see my sisters and to see my niece and nephew and how much they have grown. It was nice to see the cousins together although it was strange to see such a large age gap and how that really does make a difference in how they interact. It makes me sad that they haven’t gotten to grow up closer together or see each other more often over the years and that next time we do see them my kids will be off to college. WoW.
Getting back home was nice although nothing beats a beach in the middle of winter. Daniel couldn’t wait for his class to get back from Israel and that was all he wanted for his birthday was to have his friends back.
This past Tuesday he had his monthly bone marrow aspirate and MRI and the trooper he is woke up and went straight into his radio show. Playoff season if heating up and there is no time for rest at this point. We have gotten one test result back which is his MRD which is the minimal residual disease and it shows that there is no evidence of leukemia in his cells. This is a big test results. The rest should come next week that will tell us what is the ration of donor cells to his remaining cells and we will just go from there. In the meantime, I am having no issues with confidently saying Daniel is doing GREAT!