Well, a week ago, I said we were targeting May 6th for my admittance date for my Allo transplant. That date won't work for the donor, so we had to push it back by a couple weeks. Now, I'm scheduled to go in on May 20th, which is only two weeks later, so it's not that bad. I'll be in the hospital for Memorial Day, but I'm OK missing that because my birthday (June 28, for those who are keeping track at home) is 5 weeks and 4 days after I get admitted to the hospital. I'm told to expect between 4 and 6 weeks for this hospital stay. I doubt that I'll end up pushing close to the 6 week mark with all the prayers and fasting that'll be going on in my behalf while I'm in the hospital, so I fully expect to be home by my birthday. Now, my doctors may suggest that I temper my expectations, but I temper what I choose to temper. I said I wanted to be done with the hospital stay for my Auto transplant on the short end of the 3-4 week window they said was the norm, and I walked out of there exactly 3 weeks after I walked in. And that was with a bowel infection and chronic vomiting. I think I can be home for my birthday this time. I'm shooting for four weeks.
For the Auto transplant, they got me in there on a Tuesday morning, gave me high dose chemo drug Melphalan that day and the next, let me rest on Thursday, and infused the stem cells on Friday. This time around it'll be a very different preparative regimen. My stem cell infusion isn't until the 29th, nine days after I walk in the doors. This preparative regimen is more common, as I understand from Rachael (my Care Coordinator, in case you've forgotten). She says the two-day prep with Melphalan is the shortest regimen they have. The rest are much longer. So, that 9 days accounts for a week or so of the difference between the 3-4 week window for Auto and the 4-6 week window for Allo. I got out on "Day 17" (or 17 days post-transplant) last time. This time, "Day 17" will be June 15th, 3 weeks and 5 days after I get into the hospital. I'll give it a couple more days, til "Day 19." That'll be four weeks. That's my target.
I've been doing pretty well lately. It's been pretty cold, and it's rained a few times and snowed a couple times, so I haven't been walking much. Though it wasn't warm at all, I walked a couple miles today, and it felt good. I stopped and had a nice chat with President Curtis Ivins, our Stake President, and his wife Aleisha, who live on the street behind us. They both complimented me on how good and strong I'm looking, and I appreciated that. I feel really healthy, but I don't feel really strong. I've lost a TON of muscle tissue over the past couple months. Noelle assures me I've lost some fat, too. My arms, which were never very muscular are smaller than ever, and my legs, which were pretty muscular, are pretty sad looking. I just don't have the physical strength I used to have. It's really sad to me that when you get sick and have to be in the hospital and, even worse, on liquid nutrition, it's your muscle mass that goes away and not your fat. I guess it serves me right for having so much fat there in the first place. =0S
So, Noelle's been needing a break for some time now. She's really tired every day, physically, yes, but also emotionally, psychologically, and in every other possible way one can feel tired. Well, I reached out to some of the women she's closest to, and they've come through in a rather remarkable way to help Noelle out - and me and the kids, by extension. A happier, more relaxed Noelle makes for a happier, more relaxed Philpott home. I asked these women if somehow, one of them would be able to take Noelle away for a couple days. It was originally going to be a surprise, but I ultimately felt I had to tell Noelle. That has turned into the following: Linzi Crans, Noelle's best friend from California, is flying out next Monday night. On Tuesday, she's taking Noelle up to her sister's house in Perry, UT (about an hour north). Her sister's family will be out of town next week, so Linzi and Noelle will have the house to themselves. They'll return on Friday afternoon after three and a half days of hanging out at Linzi's sister's house and doing a bunch of girlie things. The other women have contributed to this adventure by funding Linzi's airfare and contributing "fun money." I can't wait to see pictures and talk with Noelle every night. They're going to have so much fun. I'm actually kinda jealous that she gets to get away, but not really jealous. How can you be too terribly jealous of someone who's getting precisely what they need in recompense for how well they've been taking care of you. =0) That's why I was so excited to do this for her in the first place.
Friday, April 19, 2013
Wednesday, April 10, 2013
The News We've Been Waiting For!
WE'VE FOUND A DONOR!!!
Yesterday I got a call from Rachael, my Care Coordinator at the BMT program. She said we found a donor for me. Out of the 27 possible matches in the registry, Rachael requested that the "top six" (however it is that they are classified as being better than the others...) be contacted by the registry and blood samples be requested for testing. As it turns out, five of the six were "unavailable." I think that means that they couldn't be contacted because they had moved, changed phone numbers or died. Either that or when push came to shove they just weren't willing to go down this road. Anyway, one of the six sent in a blood sample and he was a match, as Rachael said, "in every way we wanted." Yay!
Holy cow. I have my donor for my potentially curative allogeneic stem cell transplant. All of a sudden, this next step has become very real. All of the nervousness that had been on the back burner has come to the front. I'm not scared. At least, I don't think that's the appropriate word for how I feel. Noelle put it this way last night: "We have just one shot at this working. It either works or it doesn't." She didn't have to continue to the obvious "And what if it doesn't?" As I've said before, I died on the day I was diagnosed with cancer. Every day since then is a blessing. I don't want to consider the "what if..." question. I can't afford to do so. I have a wife and five young children who need me, and I need them. It's hard to look Heavenward and say, "Thy will be done," while recognizing that God's will might be to take me home. I don't think that's his plan, though. I've had several impressions and thoughts since the end of September which give me the distinct feeling that I'll be around for many years to come. Still, knowing that the GVHD is nearly impossible to avoid does make me a bit nervous. That's probably because one has no idea which of the body's systems (and how many systems and how severely) will be attacked by the graft. Will I be able to go back to work in a year or so, or will it be several years...or never? Some patients' GVHD is so severe that they become permanently disabled and can never return to work. I don't think that will be me.
Rachael told me today that she's aiming for May 6th to be the date I'm admitted to the hospital. I've been told to expect a total of from four to six weeks in the hospital. If I go the full six weeks, I would be discharged around the 17th of June. That's two days before my brother Jeff's birthday, eleven days before my 41st birthday, and ten days before my parents' family reunion begins right here in Taylorsville. The majority of the family will be here. It will be good to see everyone who's healthy, though I won't be able to participate in many - if any - of the activities other than family meals.
Anyway, When I'm back in the hospital, Noelle will need some help with picking up kids from school and things like that so she can maximize the time she can spend with me in the hospital. a couple of her sisters who came out in February and March have offered to help again, as have my mother and Noelle's aunt, Gail. We don't know if May or early June will work for any of them. I think the kids' last day of school is June 6th. Once school is out, we'll definitely need someone(s) with lots of energy and patience to be here with the kids all day long. We worked it out when I was in the hospital before, and I'm sure we can work it out again. And when I say "we," I mean Noelle. =0)
Well, I need to eat lunch and take a nap. More later...
Yesterday I got a call from Rachael, my Care Coordinator at the BMT program. She said we found a donor for me. Out of the 27 possible matches in the registry, Rachael requested that the "top six" (however it is that they are classified as being better than the others...) be contacted by the registry and blood samples be requested for testing. As it turns out, five of the six were "unavailable." I think that means that they couldn't be contacted because they had moved, changed phone numbers or died. Either that or when push came to shove they just weren't willing to go down this road. Anyway, one of the six sent in a blood sample and he was a match, as Rachael said, "in every way we wanted." Yay!
Holy cow. I have my donor for my potentially curative allogeneic stem cell transplant. All of a sudden, this next step has become very real. All of the nervousness that had been on the back burner has come to the front. I'm not scared. At least, I don't think that's the appropriate word for how I feel. Noelle put it this way last night: "We have just one shot at this working. It either works or it doesn't." She didn't have to continue to the obvious "And what if it doesn't?" As I've said before, I died on the day I was diagnosed with cancer. Every day since then is a blessing. I don't want to consider the "what if..." question. I can't afford to do so. I have a wife and five young children who need me, and I need them. It's hard to look Heavenward and say, "Thy will be done," while recognizing that God's will might be to take me home. I don't think that's his plan, though. I've had several impressions and thoughts since the end of September which give me the distinct feeling that I'll be around for many years to come. Still, knowing that the GVHD is nearly impossible to avoid does make me a bit nervous. That's probably because one has no idea which of the body's systems (and how many systems and how severely) will be attacked by the graft. Will I be able to go back to work in a year or so, or will it be several years...or never? Some patients' GVHD is so severe that they become permanently disabled and can never return to work. I don't think that will be me.
Rachael told me today that she's aiming for May 6th to be the date I'm admitted to the hospital. I've been told to expect a total of from four to six weeks in the hospital. If I go the full six weeks, I would be discharged around the 17th of June. That's two days before my brother Jeff's birthday, eleven days before my 41st birthday, and ten days before my parents' family reunion begins right here in Taylorsville. The majority of the family will be here. It will be good to see everyone who's healthy, though I won't be able to participate in many - if any - of the activities other than family meals.
Anyway, When I'm back in the hospital, Noelle will need some help with picking up kids from school and things like that so she can maximize the time she can spend with me in the hospital. a couple of her sisters who came out in February and March have offered to help again, as have my mother and Noelle's aunt, Gail. We don't know if May or early June will work for any of them. I think the kids' last day of school is June 6th. Once school is out, we'll definitely need someone(s) with lots of energy and patience to be here with the kids all day long. We worked it out when I was in the hospital before, and I'm sure we can work it out again. And when I say "we," I mean Noelle. =0)
Well, I need to eat lunch and take a nap. More later...
Tuesday, April 9, 2013
A Sister's Visit, A 5K, Spring Break and Insight into Noelle's Needs
On Tuesday, March 26th, my sister Christy (long-time Santa Rosans know/knew her as Linda) came to visit for a week. It was a lot of fun to have her here. We spent a lot of time talking, and she really seemed to enjoy being here and getting to know the kids a lot better. The kids enjoyed spending time with her, too. We were also able to give her some good time with David and Jeff's families. Here's a shot of Christy with her three "little" brothers.
One morning, Noelle and I took her to the Jordan River Parkway, even though it's the least beautiful time of year to see it. We walked over two miles that morning, enjoying the nice weather we had during the week. One night we introduced her to Ticket To Ride, our favorite board game of all time. Overall, we really enjoyed her visit. On Friday, the 29th, Jenna got sick--sort of a one-day fever enough to keep her home from school, then gone the next day. But even though the fever was gone on Saturday, she still wasn't feeling 100% and still could have been contagious, so it's good that Christy was here with us, because...
I've mentioned in other posts that I've been walking every day that the weather allows for it. Well, on Saturday, March 30th, my family and I walked a 5K to benefit the Leukemia and Lymphoma Society. My brother, David, and his family came out to walk it with us, as did Matt and Melina Moore and their kids. Christy was able to stay home with Jenna. Here's a picture of us before the race.
Before the race began, Nathan Lunstad, who is the Leukemia and Lymphoma Society's Man of the Year for Utah and who sponsored the race, invited me up to the starting line where he was speaking to everyone there. He gave me some special recognition as a current patient who's fighting leukemia. It was nice to be recognized like that. David's family walked with Carter, who hadn't quite made it to his 5th birthday yet (it was just yesterday, April 8th), and he could only make it through one of the two laps, so they only walked half of it, but a mile and a half is pretty good for a 5-year old kid. Matt Moore walked the entire 5K with me. He shaves his head, so as we walked I think others who passed us thought we were both cancer patients. =0)
In our family, Abigail finished first--she and Aija Moore ran some and walked the rest. Of course, Matt and I picked up the rear, but finished in less than an hour (between 57 and 58 minutes), according to Matt's time keeping. I thought we took more than an hour, but I'll accept his data. When I came around the last bend, my family was there waiting for me, and encouraging me to run the final 50 to 100 yards. I was afraid my brittle leg bones would snap, but figured there were a bunch of doctors from LDS Hospital East 8 there, so why not? As I ran the last 50 yards or so with my family, Nathan Lunstad was there running along side us. There were people shaking cow bells and applauding as I crossed the finish line. It felt really good. Here's a picture of us running the last few yards to the finish line. Nathan is the man in black on the left.
Mid-way through Christy's visit was the beginning of spring break for our kids. We spent a lot of good time together as a family, playing games, going to the park, etc. The kids accompanied me on my daily walks a few times, and one time Jenna reminded me that I still hadn't taken my walk for the day after 4:00. "Dad, you still haven't taken your walk today. Can we go together before dinner time?" She can be very sweet sometimes. =0)
Spring break was also pretty enlightening as it pertains to how Noelle's doing. Over the past couple weeks, it's become evident that she's incredibly stressed. Noelle's been put through the ringer lately with our kids' behavior, and Spring Break was highly concentrated time with the kids and their behavioral issues. There have been a lot of issues we've been dealing with on that front and Noelle has born the brunt of that storm that never seems to blow out. Another source of stress is that her dad died from cancer 21 years ago, and she has always been worried that I would die from cancer as well. Now I have it and the 65-80 year old people who typically are the ones who get my kind of cancer don't tend to fare very well following the allogeneic transplant. Granted, they have a lot of peripheral health issues that complicate their recoveries and make various of their bodies' systems good targets for the graft vs. host disease (GVHD). So, unfortunately, there's not a lot of data available for how 40 year old people do when they have no health concerns other than the cancer. Also, there are the financial concerns. We're at a point where there just isn't anything after the bills are paid. She stresses about that all the time. All of this just became really evident to me and I saw my strong, amazing wife on the verge of crumbling a few times. I thought about us moving on to my second transplant which involves about 4 to 6 weeks in the hospital and little or no relief for Noelle at home. The thought of going into that without Noelle having a break or any relief before that really frightens me. I began thinking, How can I give her a break and get her away from all of this for a time? What can I do for her when I have no money? And then it came to me. Noelle has enough women who love her that I'm sure I can find a way for someone to take her away for a couple days of relief and relaxation. I contacted her closest friends and have now arranged for her best friend, Linzi Crans, to fly out from California and take her up to her sister's house about an hour north of us in Perry, UT for a few days. Thanks to her wonderful friends, her sister and my mother, Linzi's airfare is taken care of. The love of my life will get the break she so desperately needs. I'm so excited for her to be able to go. Every time Noelle gets to spend time with Linzi, she is refreshed and revitalized like giving water and sunlight to a withering plant. It's the perfect remedy.
One morning, Noelle and I took her to the Jordan River Parkway, even though it's the least beautiful time of year to see it. We walked over two miles that morning, enjoying the nice weather we had during the week. One night we introduced her to Ticket To Ride, our favorite board game of all time. Overall, we really enjoyed her visit. On Friday, the 29th, Jenna got sick--sort of a one-day fever enough to keep her home from school, then gone the next day. But even though the fever was gone on Saturday, she still wasn't feeling 100% and still could have been contagious, so it's good that Christy was here with us, because...
I've mentioned in other posts that I've been walking every day that the weather allows for it. Well, on Saturday, March 30th, my family and I walked a 5K to benefit the Leukemia and Lymphoma Society. My brother, David, and his family came out to walk it with us, as did Matt and Melina Moore and their kids. Christy was able to stay home with Jenna. Here's a picture of us before the race.
Before the race began, Nathan Lunstad, who is the Leukemia and Lymphoma Society's Man of the Year for Utah and who sponsored the race, invited me up to the starting line where he was speaking to everyone there. He gave me some special recognition as a current patient who's fighting leukemia. It was nice to be recognized like that. David's family walked with Carter, who hadn't quite made it to his 5th birthday yet (it was just yesterday, April 8th), and he could only make it through one of the two laps, so they only walked half of it, but a mile and a half is pretty good for a 5-year old kid. Matt Moore walked the entire 5K with me. He shaves his head, so as we walked I think others who passed us thought we were both cancer patients. =0)
In our family, Abigail finished first--she and Aija Moore ran some and walked the rest. Of course, Matt and I picked up the rear, but finished in less than an hour (between 57 and 58 minutes), according to Matt's time keeping. I thought we took more than an hour, but I'll accept his data. When I came around the last bend, my family was there waiting for me, and encouraging me to run the final 50 to 100 yards. I was afraid my brittle leg bones would snap, but figured there were a bunch of doctors from LDS Hospital East 8 there, so why not? As I ran the last 50 yards or so with my family, Nathan Lunstad was there running along side us. There were people shaking cow bells and applauding as I crossed the finish line. It felt really good. Here's a picture of us running the last few yards to the finish line. Nathan is the man in black on the left.
Mid-way through Christy's visit was the beginning of spring break for our kids. We spent a lot of good time together as a family, playing games, going to the park, etc. The kids accompanied me on my daily walks a few times, and one time Jenna reminded me that I still hadn't taken my walk for the day after 4:00. "Dad, you still haven't taken your walk today. Can we go together before dinner time?" She can be very sweet sometimes. =0)
Spring break was also pretty enlightening as it pertains to how Noelle's doing. Over the past couple weeks, it's become evident that she's incredibly stressed. Noelle's been put through the ringer lately with our kids' behavior, and Spring Break was highly concentrated time with the kids and their behavioral issues. There have been a lot of issues we've been dealing with on that front and Noelle has born the brunt of that storm that never seems to blow out. Another source of stress is that her dad died from cancer 21 years ago, and she has always been worried that I would die from cancer as well. Now I have it and the 65-80 year old people who typically are the ones who get my kind of cancer don't tend to fare very well following the allogeneic transplant. Granted, they have a lot of peripheral health issues that complicate their recoveries and make various of their bodies' systems good targets for the graft vs. host disease (GVHD). So, unfortunately, there's not a lot of data available for how 40 year old people do when they have no health concerns other than the cancer. Also, there are the financial concerns. We're at a point where there just isn't anything after the bills are paid. She stresses about that all the time. All of this just became really evident to me and I saw my strong, amazing wife on the verge of crumbling a few times. I thought about us moving on to my second transplant which involves about 4 to 6 weeks in the hospital and little or no relief for Noelle at home. The thought of going into that without Noelle having a break or any relief before that really frightens me. I began thinking, How can I give her a break and get her away from all of this for a time? What can I do for her when I have no money? And then it came to me. Noelle has enough women who love her that I'm sure I can find a way for someone to take her away for a couple days of relief and relaxation. I contacted her closest friends and have now arranged for her best friend, Linzi Crans, to fly out from California and take her up to her sister's house about an hour north of us in Perry, UT for a few days. Thanks to her wonderful friends, her sister and my mother, Linzi's airfare is taken care of. The love of my life will get the break she so desperately needs. I'm so excited for her to be able to go. Every time Noelle gets to spend time with Linzi, she is refreshed and revitalized like giving water and sunlight to a withering plant. It's the perfect remedy.
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