It's me again, sharing the last two weeks' chaotic experiences in our world. I'm writing to you from my usual spot next to Danny's hospital bed as he sleeps to the sound of his trusty pump running a variety of antibiotics and fluids. Why are we back in Georgetown Hospital, you ask?
Two Mondays ago we heard the news that the chemo regimen in Seattle wasn't working and that we'd have to explore other options to get Dan's leukemia back into remission. We met with our doctor out there who was, shall I say, no Dr. Broome, and filled us with fear, sadness, and PANIC. After a brief phone call with Dr. Broome, my sister, and my mom (the usual suspects), Dan and I packed our apartment and we took the red-eye home to Camp Hill. In a mere 12 hours, we were home and greeted by our smiling moms in the Harrisburg airport. We were exhausted, traumatized, upset, and worried, but instantly knew we made the right decision in coming home. After some rest and family time, two days later we were back at Georgetown meeting with our familiar team of doctors and nurses who gave us hope and offered a reasonable regimen to fight off the cancer.
The chemo lasted 5 days and is a type that treats leukemia differently than previous therapies. His leukemia has become resistant to "standard" treatment and has outsmarted, in typical Dan fashion, the usual chemo therapies. He slept a lot those days and experienced some of the nausea, vomiting, and other unpleasant side-effects we so commonly associate with chemo. The wonderful nurses took care of Dan and made sure that both of us were as comfortable as could be in this disruptive place. Did I mention we sublet our apartment? Our friend's cousin is taking care of our place while we are away so Dan and I were left homeless for our short stay in DC. Luke and Meghan O'Connell so graciously offered me their home on campus in Georgetown, so I was able to get a good night's sleep and fresh cup of coffee every morning just a few steps away from the hospital. We were also around to see sweet little Faith Mariel O'Connell in her first hours of life and congratulate Luke and Meg on their second child. The hem-onc unit is right next door to labor and delivery! Little ones lift the spirit and spending time with 2 year old Clare and baby Faith rejuvenated our hope every day :)
Dr. Broome gave us the okay to head home to Camp Hill on Tuesday and we spent a day and a half enjoying my parents' empty house. The Gabler clan was on vacation at the beach so Dan and I relaxed utilizing the tivo, blender, refrigerator, one big bed for the both of us and all things a home has to offer. As is the drill when going home with a compromised immune system, Dan diligently took his temperature and closely monitored himself for any possible signs of infection. Sadly, yesterday morning Dan developed a low grade fever and some chills, so we hopped in the car back to Georgetown where we now sit. We are waiting to hear if Dan has an infection, but in the meantime he is being treated with antibiotics. We didn't want to come back to Georgetown so soon, but as my witty husband said yesterday, "better safe than sepsis" - SO TRUE. The last thing we need is another weekend in the ICU. We're glad we're here. The biopsy will still happen today and we will still get the results Tuesday.
We aren't looking at this as a set-back, just a shorter "vacation" than we expected. Go figure, you get infections when your immune system is shot. We would have liked to avoid this, but Dan is in good hands and we'll put this behind us just as we've done so many times before. We're nervous and anxious about the biopsy today, about the results coming Tuesday, and this brewing infection, but we continue to believe that a transplant is in our future. School starts back next week and I won't be joining my friends and colleagues, but I am so blessed and fortunate to be able to take the time off to take care of my Dan. There is no place I'd rather be than right by his (bed)side.
Friday, August 24, 2012
Monday, August 6, 2012
A Word from the Wife
I'm taking over this blog entry to share the latest updates from our escapades in Seattle so far. Believe it or not, we're starting our fifth week here and I wish I could say the time has flown.
Let me bring you up to speed. We spent our first few days getting acquainted with the transplant team, the doctors, nurses, social workers, pulmonologists, cardiologists, and many patients and caregivers living in the SCCA house. Our world was shattered when, on our 6th day here, we were interrupted in radiology for an unscheduled meeting with our doctor on the transplant team. He shared with us that the routine biopsy they performed 3 days earlier showed 17% leukemia cells and that his cancer had, once again, relapsed. This made Dan ineligible for his transplant and is postponed until the leukemia is in remission.
The last 4 weeks have been a whirlwind. We were shuffled to general oncology with a new team and a new plan. Dan was put on a chemo regimen immediately that has been consuming much of our time. We've been enjoying ourselves as much as we can, catching a mariners game, taking walks, playing games, eating at interesting and fun restaurants, watching 5 seasons of Friday Night Lights, and becoming coffee connoisseurs at the never-lacking coffee shops around here (it really is true). We moved into the long-term housing and have settled into our 1-bedroom apartment. Since chemo has begun to effect Dan, we've been laying low at home cherishing our time together and I've been stepping up to my caregiver duties. Through trial and error and a few sleepless nights, we've mastered a successful combination of home remedies and medicine that settle his restless legs, relieve his aching bones/joints, and soothe his nausea. I've also become an expert smoothie-maker so Dan gets all the nutrition he needs and doesn't lose weight. Dan has been through this so many times and he's pretty good at just dealing with feeling "chemo-y" as he says, and I admire him for that.
Today we got some more bad news. The biopsy from Friday showed that the leukemia is resisting chemo. Unfortunately, he has developed some immunities to therapy because he has had them before, so we are consulting with doctors tomorrow about how to proceed. SCCA has the top transplant center, which is why we came here 4 weeks ago. Since the relapse and Dan is being treated for leukemia again, we are looking into a center in Houston (MD Anderson) or possibly coming home to participate in a clinical trial or a new cocktail of drugs he hasn't had. We are far from home and rely so much on our family and friends for strength, so coming home sounds amazing to us right now. We'd love to find a trial somewhere close to home or have treatment at Georgetown to get Dan ready for the transplant. But, we are prepared to go anywhere.
We don't know what lies ahead and we are devastated by this news. We're exhausted from this lifestyle of waiting, hoping, and praying, but we know that we have to muster up the strength to keep on keeping on because the road ahead is long. I love Dan with everything, and through sickness and in health I will love him and cherish him. Yes, this is not the 2 years I had expected when I married him, but I wouldn't trade it for anything. We have spent virtually every second together since we got here, and we've fallen more in love every day. He's the most amazing man I've ever known, and I am so blessed to be his wife.
Thanks for your continued positive words of encouragement, faith, hope, and love. As Dan has said so many times on here, we are leaning on all of you to help us stay strong.
ALL will (still) be well,
Hanna
Let me bring you up to speed. We spent our first few days getting acquainted with the transplant team, the doctors, nurses, social workers, pulmonologists, cardiologists, and many patients and caregivers living in the SCCA house. Our world was shattered when, on our 6th day here, we were interrupted in radiology for an unscheduled meeting with our doctor on the transplant team. He shared with us that the routine biopsy they performed 3 days earlier showed 17% leukemia cells and that his cancer had, once again, relapsed. This made Dan ineligible for his transplant and is postponed until the leukemia is in remission.
The last 4 weeks have been a whirlwind. We were shuffled to general oncology with a new team and a new plan. Dan was put on a chemo regimen immediately that has been consuming much of our time. We've been enjoying ourselves as much as we can, catching a mariners game, taking walks, playing games, eating at interesting and fun restaurants, watching 5 seasons of Friday Night Lights, and becoming coffee connoisseurs at the never-lacking coffee shops around here (it really is true). We moved into the long-term housing and have settled into our 1-bedroom apartment. Since chemo has begun to effect Dan, we've been laying low at home cherishing our time together and I've been stepping up to my caregiver duties. Through trial and error and a few sleepless nights, we've mastered a successful combination of home remedies and medicine that settle his restless legs, relieve his aching bones/joints, and soothe his nausea. I've also become an expert smoothie-maker so Dan gets all the nutrition he needs and doesn't lose weight. Dan has been through this so many times and he's pretty good at just dealing with feeling "chemo-y" as he says, and I admire him for that.
Today we got some more bad news. The biopsy from Friday showed that the leukemia is resisting chemo. Unfortunately, he has developed some immunities to therapy because he has had them before, so we are consulting with doctors tomorrow about how to proceed. SCCA has the top transplant center, which is why we came here 4 weeks ago. Since the relapse and Dan is being treated for leukemia again, we are looking into a center in Houston (MD Anderson) or possibly coming home to participate in a clinical trial or a new cocktail of drugs he hasn't had. We are far from home and rely so much on our family and friends for strength, so coming home sounds amazing to us right now. We'd love to find a trial somewhere close to home or have treatment at Georgetown to get Dan ready for the transplant. But, we are prepared to go anywhere.
We don't know what lies ahead and we are devastated by this news. We're exhausted from this lifestyle of waiting, hoping, and praying, but we know that we have to muster up the strength to keep on keeping on because the road ahead is long. I love Dan with everything, and through sickness and in health I will love him and cherish him. Yes, this is not the 2 years I had expected when I married him, but I wouldn't trade it for anything. We have spent virtually every second together since we got here, and we've fallen more in love every day. He's the most amazing man I've ever known, and I am so blessed to be his wife.
Thanks for your continued positive words of encouragement, faith, hope, and love. As Dan has said so many times on here, we are leaning on all of you to help us stay strong.
ALL will (still) be well,
Hanna
Monday, July 2, 2012
ALL matched up
A week or so ago, Hanna and I came home to an overnight letter from Seattle Cancer Care Alliance (SCCA). We tore it open and were so pumped to read that Be The Match had found SEVERAL perfect matches for my bone marrow. This was such a huge relief and an important hurdle to clear before we are able to move on to the transplant in Seattle. We reread the letter about a dozen times to be sure that we were reading the right thing. I knew that it was likely to find a match, but it was a good feeling to actually read the words. It is pretty remarkable to think that somebody's decision to have that mouth swab and get on the registry is leading to a life-saving opportunity for me. I am very grateful for that person's decision and the decision of so many who have supported me through this by registering and encouraging others to register.
The other benefit of finding a match rather quickly is that they were able to cancel the "while we wait" chemo treatment that I was scheduled to get at Georgetown. Instead of having another week of chemo here and two weeks in recovery, we will be heading to Seattle sooner than we thought and starting the transplant process. The date of our first meeting out there is July 11th so we will be flying out and settling in on the 9th. It is just quite overwhelming to think that one week from today we will be getting on a plane to head west for four months and that the next time I am back on the east coast I will have new marrow and be that much closer to a final cure and the end of all this craziness. I assure you there will be quite the party! The most overwhelming part before we go is arranging all of the insurance, housing, and flights and the mounds of paperwork that go along with it. It has been a pretty big headache with phone tag and nobody really being able to answer questions, but, I guess, in a way it has been a distraction from dwelling too much on the transplant. It is hard to wrap my head around what the next four months will be like, but I am so comforted to know that Hanna will be by my side and will be my teammate for every step of those four months......definitely makes the whole ordeal less scary.
The first three weeks in Seattle will be filled with tests to make sure that I am healthy enough to go through with the transplant......EKG's, pulmonary tests, bloods tests, biopsies and that kind of thing. This is all stuff I have been through before (pretty sure I could give myself a biopsy at this point) so I am not too worried. I won't have any chemo so I will be pretty strong which will give Hanna and I an opportunity to check out the city a little bit and enjoy ourselves. I am going to suggest climbing Mt Ranier to the docs but I have a bad feeling about what their answer may be. At the end of July, I will receive 3 days of total body radiation which destroys all of my bone marrow. This leads up to the transplant which should be about August 2nd or 3rd. Its pretty amazing that the donor/my new best buddy will donate the marrow which will be flown to Seattle and infused into me all in the same day. The transplant itself is a pretty painless procedure and is done through the central line already placed in my chest (like a regular blood transfusion). I won't feel much and I will be able to hang out in the room with Hanna while it is happening. After that, I will be in the hospital about 3 weeks for some chemo and close monitoring to see how my body accepts the new marrow. Once my body begins to reproduce new marrow on its own, I will be discharged with daily outpatient visits while I recover and grow stronger. If all goes according to plan, we should be back on the east coast sometime in early to mid November....just in time for what will be a very meaningful and true to its name Thanksgiving.
I know that was a lot of info but I just wanted everyone to know the general plan so that we can feel like we're going through every step together even though we are so far away. We know that we will not be alone and that truly makes it so much easier to step into this battle and be confident that...
ALL Will Be Well
"We make a living by what we get, but we make a life by what we give."
The other benefit of finding a match rather quickly is that they were able to cancel the "while we wait" chemo treatment that I was scheduled to get at Georgetown. Instead of having another week of chemo here and two weeks in recovery, we will be heading to Seattle sooner than we thought and starting the transplant process. The date of our first meeting out there is July 11th so we will be flying out and settling in on the 9th. It is just quite overwhelming to think that one week from today we will be getting on a plane to head west for four months and that the next time I am back on the east coast I will have new marrow and be that much closer to a final cure and the end of all this craziness. I assure you there will be quite the party! The most overwhelming part before we go is arranging all of the insurance, housing, and flights and the mounds of paperwork that go along with it. It has been a pretty big headache with phone tag and nobody really being able to answer questions, but, I guess, in a way it has been a distraction from dwelling too much on the transplant. It is hard to wrap my head around what the next four months will be like, but I am so comforted to know that Hanna will be by my side and will be my teammate for every step of those four months......definitely makes the whole ordeal less scary.
The first three weeks in Seattle will be filled with tests to make sure that I am healthy enough to go through with the transplant......EKG's, pulmonary tests, bloods tests, biopsies and that kind of thing. This is all stuff I have been through before (pretty sure I could give myself a biopsy at this point) so I am not too worried. I won't have any chemo so I will be pretty strong which will give Hanna and I an opportunity to check out the city a little bit and enjoy ourselves. I am going to suggest climbing Mt Ranier to the docs but I have a bad feeling about what their answer may be. At the end of July, I will receive 3 days of total body radiation which destroys all of my bone marrow. This leads up to the transplant which should be about August 2nd or 3rd. Its pretty amazing that the donor/my new best buddy will donate the marrow which will be flown to Seattle and infused into me all in the same day. The transplant itself is a pretty painless procedure and is done through the central line already placed in my chest (like a regular blood transfusion). I won't feel much and I will be able to hang out in the room with Hanna while it is happening. After that, I will be in the hospital about 3 weeks for some chemo and close monitoring to see how my body accepts the new marrow. Once my body begins to reproduce new marrow on its own, I will be discharged with daily outpatient visits while I recover and grow stronger. If all goes according to plan, we should be back on the east coast sometime in early to mid November....just in time for what will be a very meaningful and true to its name Thanksgiving.
I know that was a lot of info but I just wanted everyone to know the general plan so that we can feel like we're going through every step together even though we are so far away. We know that we will not be alone and that truly makes it so much easier to step into this battle and be confident that...
ALL Will Be Well
"We make a living by what we get, but we make a life by what we give."
Thursday, June 14, 2012
Back From Sunny Seattle
Hanna and I just returned from Seattle yesterday and are still in recovery mode after a quick journey from coast to coast and back. I was discharged from Georgetown after a week of chemo on Friday and then on Sunday we headed to the Evergreen State for our Monday consultation and tours of the Fred Hutchinson Cancer Center which is a part of the Seattle Cancer Care Alliance (SCCA). After a smooth flight we rented a brand new red Ford Fusion to cart ourselves around Seattle. We were impressed with the SCCA house lodging, which is a part of the Cancer Center and an apartment complex for patients and caregivers. It has a zen garden, media room, library, common lounges and each apartment has a small kitchen. The people were great and it was a perfect place to get some good rest before a very long day on Monday.
Monday started very positively when we met an older gentleman on the shuttle who was back for his 7 year follow up after his bone marrow transplant. He had great things to say about the center and the whole transplant process. This guy really was inspiring and helped fill us with all sorts of good positive vibes. The clinic is an extremely efficient and well-oiled machine that cranks out transplants like crazy. Our first appointment was with Dr. Paul Martin for our initial consultation. He is a brilliant doc who has been working in bone marrow transplants for over 35 years; however, he did not have the warmest bedside manner. He was definitely a statistics guy and spent the first good hour dwelling on the percentages associated with transplants and going into way too much detail about the technical aspects of what exactly takes place. He didn't give us any information that was new; it was just his matter-of-fact way of talking about numbers that was extremely overwhelming and very depressing. After a whirlwind of numbers and details, he told us about all the wonderful benefits of having the transplant in Seattle. This place has been doing transplants since they were invented and all of the doctors and nurses focus 100% of their time on the care of transplant patients. The whole building is designed to give people who need marrow transplants the best shot possible. After a tough start to the day, Dr. Martin echoed a thought that we have had since the beginning of this whole journey. He said, "For you, percentages do not matter. You will either be 0% or 100% and there is no reason that you will not be the 100%". We're hanging onto that.
After meeting with the doctor, we met with a financial representative who was wonderful and will help us through the mountain of insurance paperwork and everything along with relocating. Then a nurse gave us a tour of the clinic which included a library, cafeteria, many lounges, a kitchen stocked with food and drinks for patients receiving treatments, and a business office where you can use computers, printers, fax machines and whatever else you might need while you are there. Around every corner was another person welcoming us and making us feel like we would be taken care of and loved during our time there. It is inspiring and hopeful to know that our care will be so comprehensive and that there truly is a building full of people that will help us through every step. Knowing that all of the patients there were going through similar treatment gave me a new sense of hope that we'll all be fighting this together.
Having enough cancer talk for the day, Hanna and I were ready to explore Seattle a bit before heading back to the airport to catch the red eye back to DC. Developing our habit for beating the odds, we had a beautiful, clear, and sunny day to check out the city. We walked around Pike Place Market with drinks from the first ever Starbucks, ate kabobs while catching some sun in a beautiful park overlooking the water, and took the touristy trip to the top of the Space Needle.....which was extra amazing because of the clear day. We had great views of Mt. Rainer, the entire city, and all of the distant mountain ranges. The last stroke of luck for the day came at the airport when we got moved into the exit row for the long flight home which translated into actually being able to sleep all of the way.
For now the search is underway for a suitable bone marrow donor. Being of northern European descent is an advantage since the matches are tied to ethnicity, but it is still like trying to find a needle in a haystack. It is so important to have a massive pool of potential donors so that everybody that needs a match can be paired. If you have not joined the marrow registry yet, it is really simple and can be a lifesaving choice (I can't stress that enough). My match finding process should take 4 to 6 weeks and, in the meantime, we will be back in DC waiting and continuing to get chemo at Georgetown to keep me in remission. If a good match is found, we could be headed out for the 3 to 4 month process sometime in July.
This whole situation continues to be terrifying, overwhelming, and exhausting; yet, at the same time, it has affirmed the power of prayer, the importance of hope, and the amazing force of love in this life. The love of my beautiful wife, my family, my friends, and complete strangers continue to force out and overpower the sadness and fear when they try to creep in. It gives me hope and makes it clear that my success will be 100% and that.......
ALL Will Be Well
Monday started very positively when we met an older gentleman on the shuttle who was back for his 7 year follow up after his bone marrow transplant. He had great things to say about the center and the whole transplant process. This guy really was inspiring and helped fill us with all sorts of good positive vibes. The clinic is an extremely efficient and well-oiled machine that cranks out transplants like crazy. Our first appointment was with Dr. Paul Martin for our initial consultation. He is a brilliant doc who has been working in bone marrow transplants for over 35 years; however, he did not have the warmest bedside manner. He was definitely a statistics guy and spent the first good hour dwelling on the percentages associated with transplants and going into way too much detail about the technical aspects of what exactly takes place. He didn't give us any information that was new; it was just his matter-of-fact way of talking about numbers that was extremely overwhelming and very depressing. After a whirlwind of numbers and details, he told us about all the wonderful benefits of having the transplant in Seattle. This place has been doing transplants since they were invented and all of the doctors and nurses focus 100% of their time on the care of transplant patients. The whole building is designed to give people who need marrow transplants the best shot possible. After a tough start to the day, Dr. Martin echoed a thought that we have had since the beginning of this whole journey. He said, "For you, percentages do not matter. You will either be 0% or 100% and there is no reason that you will not be the 100%". We're hanging onto that.
After meeting with the doctor, we met with a financial representative who was wonderful and will help us through the mountain of insurance paperwork and everything along with relocating. Then a nurse gave us a tour of the clinic which included a library, cafeteria, many lounges, a kitchen stocked with food and drinks for patients receiving treatments, and a business office where you can use computers, printers, fax machines and whatever else you might need while you are there. Around every corner was another person welcoming us and making us feel like we would be taken care of and loved during our time there. It is inspiring and hopeful to know that our care will be so comprehensive and that there truly is a building full of people that will help us through every step. Knowing that all of the patients there were going through similar treatment gave me a new sense of hope that we'll all be fighting this together.
Having enough cancer talk for the day, Hanna and I were ready to explore Seattle a bit before heading back to the airport to catch the red eye back to DC. Developing our habit for beating the odds, we had a beautiful, clear, and sunny day to check out the city. We walked around Pike Place Market with drinks from the first ever Starbucks, ate kabobs while catching some sun in a beautiful park overlooking the water, and took the touristy trip to the top of the Space Needle.....which was extra amazing because of the clear day. We had great views of Mt. Rainer, the entire city, and all of the distant mountain ranges. The last stroke of luck for the day came at the airport when we got moved into the exit row for the long flight home which translated into actually being able to sleep all of the way.
For now the search is underway for a suitable bone marrow donor. Being of northern European descent is an advantage since the matches are tied to ethnicity, but it is still like trying to find a needle in a haystack. It is so important to have a massive pool of potential donors so that everybody that needs a match can be paired. If you have not joined the marrow registry yet, it is really simple and can be a lifesaving choice (I can't stress that enough). My match finding process should take 4 to 6 weeks and, in the meantime, we will be back in DC waiting and continuing to get chemo at Georgetown to keep me in remission. If a good match is found, we could be headed out for the 3 to 4 month process sometime in July.
This whole situation continues to be terrifying, overwhelming, and exhausting; yet, at the same time, it has affirmed the power of prayer, the importance of hope, and the amazing force of love in this life. The love of my beautiful wife, my family, my friends, and complete strangers continue to force out and overpower the sadness and fear when they try to creep in. It gives me hope and makes it clear that my success will be 100% and that.......
ALL Will Be Well
"Say
you were standing with one foot in the oven and one foot in an ice
bucket. According to the percentage people, you should be perfectly
comfortable."
“Love is the foolishness of men, and the wisdom of God.”
Thursday, June 7, 2012
A Bedside Update from Georgetown
Since I last wrote we have been speaking with people from the University of Washington and the Fred Hutchinson Cancer Center out in Seattle to make plans for moving forward. The first step is to head out there for a consultation. My amazing bride Hanna and I are leaving on Sunday for a quick one day meeting where we will meet everybody in Seattle and get a better picture of what will happen next and where we will be spending 3 or 4 months. We are really excited because it will make this whole next leg much more real (that and we will get to see the first Starbucks and maybe toss a fish or two around the market). We will meet with doctors, nurses, financial representatives, the donor search team, and take tours of the outpatient and inpatient centers as well as the long term housing options that are affiliated with the hospital. It will put us in a much better place toward knowing what we are about to step into.
In the meantime, Dr. Broome, as well as the docs out in Seattle, want to make sure that my leukemia stays in remission so I have been admitted at Georgetown all week getting another round of chemo. This is more preventative than anything but it is the same regimen of drugs that I received last month here at Georgetown. The timing of our permanent trip out to Seattle depends on how quickly an unrelated donor can be found from the bone marrow registry and how quickly everything gets set for us out in Seattle. After we get back from our consult, I'll recover for a week or two from this chemo followed by at least one more round here at Georgetown. Ideally, after that next round of chemo, things will be ready in Seattle and we will be able to head out sometime in July. It feels good to know that all these balls are rolling and that we are getting closer to a final step and a FINAL CURE. Until then, patience, prayer, perseverance, and positivity is the name of the game. The odds are slim of being a marrow match with somebody so the system runs best for everybody if there are tons of people registered to be donors. It really saves lives and is not much of an ordeal for the donor. If you haven't, I encourage everybody to look into getting typed so your name gets on the registry (it's a simple cotton swab on your mouth - totally painless). The registry is the resource that helps save people's lives all over the world. How cool would it be if my situation helped save someone's life who needs a transplant just like me? Get more information about becoming a donor at Be the Match Registry here: http://marrow.org/Join/Join_Now/Join_Now.aspx
I can't say enough about the support system that has helped Hanna and I through every step in the last 3 years of my battle with leukemia. Since June 8, 2009 when I first got the news, our support has never wavered. We've had visitors, meals, cards, phone calls, and a massive amount of love sent our way. These are the things that make the day to day manageable and inspiring. A huge thanks to my cousin Vikki who has organized a fundraiser that will help us with our expenses as this battle heads west to Seattle. Her support and the generosity of everybody who has donated is overwhelming, and we are forever grateful.
Well, my day at the hospital is passing along with excessive amounts of the game show network and crossword puzzles so I guess I better get back to this episode of Lingo! I will be discharged tomorrow and then off to Seattle on Sunday! Much love, God bless, the fight goes on and......
ALL Will Be Well
“Abide in peace, banish cares, take no account of all that happens, and you will serve God according to His good pleasure and rest in Him.”
In the meantime, Dr. Broome, as well as the docs out in Seattle, want to make sure that my leukemia stays in remission so I have been admitted at Georgetown all week getting another round of chemo. This is more preventative than anything but it is the same regimen of drugs that I received last month here at Georgetown. The timing of our permanent trip out to Seattle depends on how quickly an unrelated donor can be found from the bone marrow registry and how quickly everything gets set for us out in Seattle. After we get back from our consult, I'll recover for a week or two from this chemo followed by at least one more round here at Georgetown. Ideally, after that next round of chemo, things will be ready in Seattle and we will be able to head out sometime in July. It feels good to know that all these balls are rolling and that we are getting closer to a final step and a FINAL CURE. Until then, patience, prayer, perseverance, and positivity is the name of the game. The odds are slim of being a marrow match with somebody so the system runs best for everybody if there are tons of people registered to be donors. It really saves lives and is not much of an ordeal for the donor. If you haven't, I encourage everybody to look into getting typed so your name gets on the registry (it's a simple cotton swab on your mouth - totally painless). The registry is the resource that helps save people's lives all over the world. How cool would it be if my situation helped save someone's life who needs a transplant just like me? Get more information about becoming a donor at Be the Match Registry here: http://marrow.org/Join/Join_Now/Join_Now.aspx
I can't say enough about the support system that has helped Hanna and I through every step in the last 3 years of my battle with leukemia. Since June 8, 2009 when I first got the news, our support has never wavered. We've had visitors, meals, cards, phone calls, and a massive amount of love sent our way. These are the things that make the day to day manageable and inspiring. A huge thanks to my cousin Vikki who has organized a fundraiser that will help us with our expenses as this battle heads west to Seattle. Her support and the generosity of everybody who has donated is overwhelming, and we are forever grateful.
Well, my day at the hospital is passing along with excessive amounts of the game show network and crossword puzzles so I guess I better get back to this episode of Lingo! I will be discharged tomorrow and then off to Seattle on Sunday! Much love, God bless, the fight goes on and......
ALL Will Be Well
“Abide in peace, banish cares, take no account of all that happens, and you will serve God according to His good pleasure and rest in Him.”
Tuesday, May 29, 2012
Cocktails and Remission
First of all, Happy Memorial Day to everybody. It was a beautiful weekend and I hope everybody got to spend it with family and friends, but, most of all, we should all take time to remember the heroism of those soldiers who were never able to come home. We owe them a debt of gratitude that can never live up to their sacrifices. Thank you to all who serve and have served in the armed forces.
So, I will start with some great news. On Friday, Dr. Broome let us know that the chemo worked amazingly and that my cancer is back in remission....where it belongs. This was a piece of great news because it was a fear that I would never be able to return to remission. When leukemia relapses after an initial remission, it is much more difficult to get into a second remission because the leukemia cells develop immunities to the chemo and are often difficult to kill. So, the first round of chemo worked and my cancer is officially gone and out of my system. The unfortunate thing is that there is an extreme likelihood that since I relapsed once, I would relapse again without further treatment. This is why they can't just let me go even though all the cancer is gone. The best bet for a long term cure is a bone marrow transplant. The remission was critical, though, because a transplant will not be successful unless the leukemia is in remission. This means that we can finally look toward the next big step, which is getting the transplant at the Fred Hutchinson Center in Seattle.....I have already broken out my 1995 Pearl Jam/Nirvana mix tape in preparation! The transplant center should be contacting us this week to set up a consult in the near future where Hanna and I will fly out and make a plan for this 100 day process. I will likely receive another round of chemo here at Georgetown to make sure I stay in remission while the Seattle people find a donor and set things up. The news of achieving this remission was a fantastic way to start the weekend and was the best we could have hoped for after only one round of chemo.
On another happy note, four of our amazing friends organized a happy hour fundraiser to help Hanna and I with many of the extra bills and expenses that this ordeal has brought. Justin, Alison, Trisha, and Jodi went way beyond expectations with Cocktails for a Cause. It was a happy hour at a local bar where so many of our family and friends were able to gather and support us financially, emotionally, and just with good company. It was overwhelming and inspiring to be surrounded by such love and goodness and we cannot begin to thank the four of them and everybody else who attended or supported the event. It was yet another reminder of our extreme blessings and the strength that time with loved ones provides.
Hanna and I were also able to make it home to Pennsylvania this weekend which was healing in its normalcy. We visited with our family and friends, swam in the neighbor's pool, barbequed, watched sports, and just enjoyed being home for the long weekend. It was the most active I have been since recovering from the infection I had and, for the most part, I was able to hang in there and be myself and almost forget about all of this cancer nonsense for a few days.
Now we are waiting to hear from the Fred Hutchinson Center to plan the next steps of this journey. The past week has inspired us with the continuing outpouring of love and energized us to face what is next. Thanks you for the love and prayers.....they are what keep us going and make us certain that...
ALL Will Be Well
"Friendship is unnecessary, like philosophy, like art... It has no survival value; rather it is one of those things that give value to survival."
So, I will start with some great news. On Friday, Dr. Broome let us know that the chemo worked amazingly and that my cancer is back in remission....where it belongs. This was a piece of great news because it was a fear that I would never be able to return to remission. When leukemia relapses after an initial remission, it is much more difficult to get into a second remission because the leukemia cells develop immunities to the chemo and are often difficult to kill. So, the first round of chemo worked and my cancer is officially gone and out of my system. The unfortunate thing is that there is an extreme likelihood that since I relapsed once, I would relapse again without further treatment. This is why they can't just let me go even though all the cancer is gone. The best bet for a long term cure is a bone marrow transplant. The remission was critical, though, because a transplant will not be successful unless the leukemia is in remission. This means that we can finally look toward the next big step, which is getting the transplant at the Fred Hutchinson Center in Seattle.....I have already broken out my 1995 Pearl Jam/Nirvana mix tape in preparation! The transplant center should be contacting us this week to set up a consult in the near future where Hanna and I will fly out and make a plan for this 100 day process. I will likely receive another round of chemo here at Georgetown to make sure I stay in remission while the Seattle people find a donor and set things up. The news of achieving this remission was a fantastic way to start the weekend and was the best we could have hoped for after only one round of chemo.
On another happy note, four of our amazing friends organized a happy hour fundraiser to help Hanna and I with many of the extra bills and expenses that this ordeal has brought. Justin, Alison, Trisha, and Jodi went way beyond expectations with Cocktails for a Cause. It was a happy hour at a local bar where so many of our family and friends were able to gather and support us financially, emotionally, and just with good company. It was overwhelming and inspiring to be surrounded by such love and goodness and we cannot begin to thank the four of them and everybody else who attended or supported the event. It was yet another reminder of our extreme blessings and the strength that time with loved ones provides.
Hanna and I were also able to make it home to Pennsylvania this weekend which was healing in its normalcy. We visited with our family and friends, swam in the neighbor's pool, barbequed, watched sports, and just enjoyed being home for the long weekend. It was the most active I have been since recovering from the infection I had and, for the most part, I was able to hang in there and be myself and almost forget about all of this cancer nonsense for a few days.
Now we are waiting to hear from the Fred Hutchinson Center to plan the next steps of this journey. The past week has inspired us with the continuing outpouring of love and energized us to face what is next. Thanks you for the love and prayers.....they are what keep us going and make us certain that...
ALL Will Be Well
"Friendship is unnecessary, like philosophy, like art... It has no survival value; rather it is one of those things that give value to survival."
Wednesday, May 23, 2012
A Trip to the ICU
It has been a very eventful month since my last blog. Cycle II took about 5 days with tons of
chemo, but caused minimal side effects other than fatigue and more hair loss. I was sent home to recover until a biopsy a few weeks later after my body had time to recover. On May 3rd,
I had a regular check-in with Dr. Broome and went home, only to go right back
because I had a temperature of 101.5 (I’m instructed to call and head to the hospital if its over 100.5). I was pretty bummed that I had to be admitted,
but not worried (I needed a break from the hospital meatloaf). This “neutropenic
fever” happened twice before and meant spending 4-5 days in the hospital on
antibiotics. That evening, I got extreme
chills that I was unable to shake even with a zillion heated blankets. Quickly, there were about
a dozen nurses and doctors surrounding the bed.
My blood pressure fell drastically, my heart rate climbed dangerously,
and my temperature spiked to over 105 degrees.
The medical team acted quickly, but
they remained calm and reassured us that I was going to be fine. Our friends Dr. “Jimmy” McCloskey and Mary
Ellen, who work at Georgetown, both happened to be there visiting with us at the time and sprung
into action with the rest of the team.
They were so helpful and added to our peace of mind. Luke happened to stop by for a visit and was
able to stay with Hanna. It made
everything much less scary to be surrounded by our friends during those
horrible moments.
That pretty much brings us to yesterday when I had a bone marrow biopsy to see how effective the first round of chemo has been. Since I can't have a transplant until the cancer is in remission, the results of this biopsy are crucial. Dr. Broome said the marrow looked clear and promising, but we won't have the official results until later this week. Please say a few extra prayers that the results come back as remission so we can make plans to head to the west coast in a few weeks. We are planning to re-locate to Seattle, Washington for about 100 days to have the bone marrow transplant at the Fred Hutchinson cancer center. They specialize in transplants for ALL and have some of the best success rates and most experience in the country....a nurse told us that the Princess of Saudi Arabia had a transplant there so it must not be too shabby. We are very blessed to be able to consider this option and look forward to taking this next step on the journey to a cure.
I know I have said it before, but I have to mention again that everyone's thoughts, prayers, and kind words and gestures have truly inspired us to put all our effort into this fight. Not gonna lie, this has been the scariest leg of the race so far, sometimes leaving me to wonder how I am going to get through this. But those moments are overshadowed by moments of hope, inspiration, and love brought on by the kindness and love of everyone on this journey. With the help of our medical team, our strong faith, and the outpouring of support from family and friends (and friends of friends we don't even know), we know that we can do this. and we WILL do this. And no matter what......
ALL Will Be Well!
"Hope is a good thing, maybe the best of things. And no good thing ever dies."
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