MY DONOR'S CONTACT INFORMATION!!!
I can't express how happy that made me. His name is Ambros, and he lives in Albuquerque, New Mexico. After contemplating what in the world I might say to the man who saved my life (as if I hadn't thought about it before...), I just started writing the following email:
Hello, Ambros.
I am so happy to be writing to you. My 42nd birthday is this Saturday, June 28, and I can't imagine a better birthday present I could possibly receive than your contact information. For the last 13 months since my stem cell transplant on May 29, 2013, I have wanted nothing more than to have the opportunity to contact you personally to say one very simple thing:
Thank you for saving my life.
Writing those words seems so incredibly inadequate. You may or may not realize it, but without your stem cells that have created new, healthy marrow, which now produces healthy, cancer-free blood cells for me, I would likely be dead by now. I have a wife and five children (ages 8 to 14), and we all thank God for you and for your willingness to reach out and save a complete stranger's life. What you did was extremely selfless and has put me in your eternal debt. Thank you, thank you, thank you. Since last April, when I learned that a donor had been found for me, I have thanked God daily for "my donor" - now I can thank God for Ambros.
Perhaps I should give you some information about me and the cancer you saved me from. My name is John Philpott. I was born in Southern California, and raised primarily in Northern California in a city called Santa Rosa, about an hour north of San Francisco. I received my Bachelor of Music in Vocal Performance from Brigham Young University-Hawaii, and my Master of Music in Vocal Performance from California State University-Sacramento. I was married on December 27, 1996 to my college sweetheart, Noelle, and we have since had one child by birth and added four children to our family by way of adoption. In 2009, following the finalization of the adoption of the youngest of our children, Noelle and I followed our guts and moved our family from Sacramento, CA to Taylorsville, UT, right in the heart of the Salt Lake Valley. We knew we needed a bigger home in a more family-friendly environment than what California could offer us. We did not know how critical that move to Utah would be in ultimately saving my life.
In September 2012, I injured my shoulder while doing a pushup. I know, sounds pretty wimpy, right? That shoulder injury led to a doctor's visit, which led to a visit with an orthopedist. He took some x-rays, but could see nothing conclusive that would explain my extremely limited range of motion and severe pain in moving my left shoulder. He ordered a series of MRIs on my shoulder, shoulder blade, and upper arm. A few days later, he called me saying that there were "bone marrow changes in all of the bones they could see, and lots of it." He told me he needed me to come in the next morning for some blood tests. I went that Wednesday morning, and on Thursday afternoon, he called to confirm what Noelle and I had feared. He said that my white blood cell counts were through the roof and the pathology came back abnormal. He referred me to an oncologist and hematologist.
On Friday, October 4, 2012, Noelle and I met with Dr. Richard Frame, a leukemia specialist, and were given a working diagnosis of Chronic Lymphocytic Leukemia, or CLL. We scheduled my first round of chemotherapy, which was to be given in his office as an outpatient, beginning on Monday, October 15th. In the intervening week, I was to go to Intermountain LDS Hospital for some tests to nail down my official diagnosis and determine just how advanced my leukemia was. When we arrived at Dr. Frame's office on Monday the 15th, he brought us in, sat us down and told us that I didn't have CLL after all. He was waiting for one more test result to come in to confirm the findings of the other tests, and we wouldn't proceed with the chemo regimen we had planned. We would do a 30-minute infusion of Zometa (a bone strengthener), and then he would call us later that day.
That afternoon, he called and told me I had Plasma Cell Leukemia (PCL), which is an extremely rare form of Multiple Myeloma. He said it's typically found in patients who are well into their 60s and beyond (the median age at diagnosis is 67; I was just 40), and that I was in for what might turn out to be a very long battle for my life. He said he was turning my care over to the Blood and Marrow Transplant (BMT) unit at LDS Hospital, as I would ultimately need a marrow transplant in an attempt to save my life. The next morning, I received a phone call from Rachael, my care coordinator at LDS Hospital's BMT unit, telling me they needed me to come be admitted to the hospital that day, and that I would likely be there for about 6 weeks to induce my chemotherapy and treatment for my leukemia.
Plasma Cell Leukemia is a blood cancer that is caused when a person's DNA "breaks," in a manner of speaking, and begins telling the marrow in their body to produce faulty white blood cells with no immune capabilities. Those cancerous "blasts" eat their way out of the hard white bone matter, causing the bones to become very porous and brittle, which is why I suffered a partial separation of a tendon from my lower-left shoulder blade the month before. The shoulder blade was just too porous for the tendon to hold on to it with the stress of the pushup. Plasma Cell Leukemia is extremely aggressive. My doctors believe that six months before diagnosis, I was still cancer free. Tests in early October showed, though, that 74% of my white blood cells were cancerous blasts. Undiagnosed and heading into the cold and flu season, I was just a month or two away from catching some bug that my body would have no chance of fighting or surviving. Imagine...I could have died from a cold or simple flu bug. Thank Heaven I hurt my shoulder. As it is, the prognosis for patients with PCL is very, very poor. I am fortunate that
Gratefully, LDS Hospital's BMT unit is exceptional at what they do. It's overseen by a group of 7 incredibly talented and dedicated blood cancer doctors who truly work together as a team to treat hundreds of leukemia and lymphoma patients each year. After looking into the options I would have had in the Sacramento area, I've decided that God truly led Noelle and I to move to Salt Lake City to receive the best treatment I could possibly hope for from a true team of professionals who have become like family to me. T he 6 weeks I was initially expected to be in the hospital turned out to only be 5 days. After beginning my chemo and seeing that my body was withstanding it pretty well, my doctors said I could go home and continue my chemotherapy on an outpatient basis. I was thrilled. Over the next 16 weeks, I went through 4 rounds of chemotherapy, and was admitted to the hospital once more for one of my two bouts with pneumonia. Gratefully, my body continued to avoid the most horrible of possible chemotherapy side effects, and I was even able to continue working until Valentine's Day, February 14, 2013.
I was admitted to the BMT unit shortly thereafter for the first of my two stem cell transplants on February 22. We were going to do what is referred to as a "tandem transplant," when a patient is given his own (cleaned) stem cells in an effort to shock the leukemia into remission for a couple months before going through the donor transplant. I spent three weeks in the hospital for that transplant, suffering an infection in my lower large intestine, but recovering OK. I was sent home to recover fully and prepare for a hopeful donor stem cell transplant, provided a matched and willing donor could be found for me. My first transplant only had the power to stem the tide, so to speak, as my own marrow would ultimately produce the leukemic cells again. I would need someone else's marrow to produce my blood for me if I was going to live. On April 9, 2013, Rachael (my care coordinator) called me with news that would change my life forever. A donor had been found, and he was a perfect 10-out-of-10 HLA match. Over the next few weeks, we worked out the timeline and my second (and much more important) transplant was scheduled for May 29, 2013...my re-birthday.
Over the week leading up to my transplant, I was given very high-dose chemotherapy to completely wipe out my own marrow. Then on the morning of May 29, representatives from the American Red Cross walked into my room with your frozen stem cells. They thawed them out at my bedside with a special machine, hooked them up to my IV, and my new life began. Noelle and I celebrated my rebirth with a little chocolate cake right there in my hospital room. Over the next couple weeks, your stem cells circulated through my blood stream, found their way to my hollowed out bones, set up shop and began to generate bone marrow...good, clean, healthy bone marrow. That marrow produced clean, cancer-free blood for my body for the first time in about a year. I was released to go home on Friday, June 14, just in time for Father's Day.
The next several months were pretty hard. I spent another 3 weeks in the hospital with failing kidneys and liver, and medicines that weren't being filtered out of my system. I don't even remember most of the first 12 days of that hospital stay, as the medicines turned into toxins in my body and reduced my brain activity to only about 1/2 of normal. Following that hospital stay, I needed 4-1/2 months of physical and occupational therapy to help me regain my strength, balance and coordination again. I had to take steroids that caused me to gain a ton of weight and look a little like the Stay Puft Marshmallow Man for the 5 months I had to take them. Gradually, though, I have regained my strength, relative health and a sense of quasi-normalcy.
For now, my...uh...your immune system is still being partially suppressed by a medication called Cyclosporine (Cyclo). With transplants, the donor's immune system can fight against the recipient's body systems like the skin, eyes, GI tract, nervous system, liver, kidneys, etc. It's called Graft vs. Host Disease (GVH or GVHD). While I was in the hospital after receiving your stem cells, I got some GVH of the GI tract that made it very difficult to eat, swallow or digest anything for several days. Over the past few months, as we've been slowly tapering my Cyclo dosage, I've been getting some GVH of the skin, but it's very mild. I've lost the majority of my body hair and my skin gets dry, bumpy and rashy at times. It's nowhere near as bad as it can get. A friend of mine is currently suffering from GVH of the skin, and looks and feels like a burn victim. We hope to have me completely off of the Cyclo within a few months from now so your immune system can begin protecting me the way it protects you.
Overall, I feel pretty darned great. My family is actually on vacation this week in Park City, UT, and we're enjoying ourselves thoroughly. I've been cleared by my doctors to go back to work part time for a while to assess how my energy levels hold up before going back full time. I'm in the interview process with the National Marrow Donor Program (Be The Match) to be hired as their Drive Attendant for the state of Utah. I'm already a Volunteer Ambassador, and have run three marrow donor recruitment drives already. Now, I'd be paid to do what I've been doing as a volunteer. I decided after learning that Be The Match had provided my donor for me that I wanted to give back to the organization that had given me my life. How cool that they're willing to pay me for what I've already been willing to do as a volunteer.
Anyway, since September of 2012, shortly before my diagnosis came, I've been keeping a blog to chronicle my thoughts, feelings and experiences as I've battled for my life. If you'd like to read any of it, here's the link: http://philpottsfight.blogspot.com. I'm also on Facebook: https://www.facebook.com/philpottdad.
I'm sorry this email is so long, but I wanted you to know what my path has been like and what your part in it has been. Without you, my chances of surviving my leukemia were basically nonexistent. With you and your stem cells, I have the chance of living for years or even decades beyond today. Being able to thank you for that gift is exactly why I have been so anxious to reach my first "transplantiversary" (transplant anniversary) and request your contact information. I would be thrilled to learn more about you, as well. All I've known until now is that my donor was a 29-year old male at the time of his donation. Now I have your name address, email and phone number. What else can you tell me about yourself? Married? Kids? If so, please don't be shy to tell your family you're a hero. =0) Also, I'd be interested to know what led you to joining the donor registry.
Well, I guess that's about the longest "introductory" email I've ever written. I'll sign off for now, and hope you're well and gratified to know that you've made an immeasurable difference in the life of another human being, not to mention the lives of his family and friends. I hope to hear back from you when you can find a moment.
Thank you again for the gift of life.
Sincerely,
John Philpott
I am so happy to be writing to you. My 42nd birthday is this Saturday, June 28, and I can't imagine a better birthday present I could possibly receive than your contact information. For the last 13 months since my stem cell transplant on May 29, 2013, I have wanted nothing more than to have the opportunity to contact you personally to say one very simple thing:
Thank you for saving my life.
Writing those words seems so incredibly inadequate. You may or may not realize it, but without your stem cells that have created new, healthy marrow, which now produces healthy, cancer-free blood cells for me, I would likely be dead by now. I have a wife and five children (ages 8 to 14), and we all thank God for you and for your willingness to reach out and save a complete stranger's life. What you did was extremely selfless and has put me in your eternal debt. Thank you, thank you, thank you. Since last April, when I learned that a donor had been found for me, I have thanked God daily for "my donor" - now I can thank God for Ambros.
Perhaps I should give you some information about me and the cancer you saved me from. My name is John Philpott. I was born in Southern California, and raised primarily in Northern California in a city called Santa Rosa, about an hour north of San Francisco. I received my Bachelor of Music in Vocal Performance from Brigham Young University-Hawaii, and my Master of Music in Vocal Performance from California State University-Sacramento. I was married on December 27, 1996 to my college sweetheart, Noelle, and we have since had one child by birth and added four children to our family by way of adoption. In 2009, following the finalization of the adoption of the youngest of our children, Noelle and I followed our guts and moved our family from Sacramento, CA to Taylorsville, UT, right in the heart of the Salt Lake Valley. We knew we needed a bigger home in a more family-friendly environment than what California could offer us. We did not know how critical that move to Utah would be in ultimately saving my life.
In September 2012, I injured my shoulder while doing a pushup. I know, sounds pretty wimpy, right? That shoulder injury led to a doctor's visit, which led to a visit with an orthopedist. He took some x-rays, but could see nothing conclusive that would explain my extremely limited range of motion and severe pain in moving my left shoulder. He ordered a series of MRIs on my shoulder, shoulder blade, and upper arm. A few days later, he called me saying that there were "bone marrow changes in all of the bones they could see, and lots of it." He told me he needed me to come in the next morning for some blood tests. I went that Wednesday morning, and on Thursday afternoon, he called to confirm what Noelle and I had feared. He said that my white blood cell counts were through the roof and the pathology came back abnormal. He referred me to an oncologist and hematologist.
On Friday, October 4, 2012, Noelle and I met with Dr. Richard Frame, a leukemia specialist, and were given a working diagnosis of Chronic Lymphocytic Leukemia, or CLL. We scheduled my first round of chemotherapy, which was to be given in his office as an outpatient, beginning on Monday, October 15th. In the intervening week, I was to go to Intermountain LDS Hospital for some tests to nail down my official diagnosis and determine just how advanced my leukemia was. When we arrived at Dr. Frame's office on Monday the 15th, he brought us in, sat us down and told us that I didn't have CLL after all. He was waiting for one more test result to come in to confirm the findings of the other tests, and we wouldn't proceed with the chemo regimen we had planned. We would do a 30-minute infusion of Zometa (a bone strengthener), and then he would call us later that day.
That afternoon, he called and told me I had Plasma Cell Leukemia (PCL), which is an extremely rare form of Multiple Myeloma. He said it's typically found in patients who are well into their 60s and beyond (the median age at diagnosis is 67; I was just 40), and that I was in for what might turn out to be a very long battle for my life. He said he was turning my care over to the Blood and Marrow Transplant (BMT) unit at LDS Hospital, as I would ultimately need a marrow transplant in an attempt to save my life. The next morning, I received a phone call from Rachael, my care coordinator at LDS Hospital's BMT unit, telling me they needed me to come be admitted to the hospital that day, and that I would likely be there for about 6 weeks to induce my chemotherapy and treatment for my leukemia.
Plasma Cell Leukemia is a blood cancer that is caused when a person's DNA "breaks," in a manner of speaking, and begins telling the marrow in their body to produce faulty white blood cells with no immune capabilities. Those cancerous "blasts" eat their way out of the hard white bone matter, causing the bones to become very porous and brittle, which is why I suffered a partial separation of a tendon from my lower-left shoulder blade the month before. The shoulder blade was just too porous for the tendon to hold on to it with the stress of the pushup. Plasma Cell Leukemia is extremely aggressive. My doctors believe that six months before diagnosis, I was still cancer free. Tests in early October showed, though, that 74% of my white blood cells were cancerous blasts. Undiagnosed and heading into the cold and flu season, I was just a month or two away from catching some bug that my body would have no chance of fighting or surviving. Imagine...I could have died from a cold or simple flu bug. Thank Heaven I hurt my shoulder. As it is, the prognosis for patients with PCL is very, very poor. I am fortunate that
Gratefully, LDS Hospital's BMT unit is exceptional at what they do. It's overseen by a group of 7 incredibly talented and dedicated blood cancer doctors who truly work together as a team to treat hundreds of leukemia and lymphoma patients each year. After looking into the options I would have had in the Sacramento area, I've decided that God truly led Noelle and I to move to Salt Lake City to receive the best treatment I could possibly hope for from a true team of professionals who have become like family to me. T he 6 weeks I was initially expected to be in the hospital turned out to only be 5 days. After beginning my chemo and seeing that my body was withstanding it pretty well, my doctors said I could go home and continue my chemotherapy on an outpatient basis. I was thrilled. Over the next 16 weeks, I went through 4 rounds of chemotherapy, and was admitted to the hospital once more for one of my two bouts with pneumonia. Gratefully, my body continued to avoid the most horrible of possible chemotherapy side effects, and I was even able to continue working until Valentine's Day, February 14, 2013.
I was admitted to the BMT unit shortly thereafter for the first of my two stem cell transplants on February 22. We were going to do what is referred to as a "tandem transplant," when a patient is given his own (cleaned) stem cells in an effort to shock the leukemia into remission for a couple months before going through the donor transplant. I spent three weeks in the hospital for that transplant, suffering an infection in my lower large intestine, but recovering OK. I was sent home to recover fully and prepare for a hopeful donor stem cell transplant, provided a matched and willing donor could be found for me. My first transplant only had the power to stem the tide, so to speak, as my own marrow would ultimately produce the leukemic cells again. I would need someone else's marrow to produce my blood for me if I was going to live. On April 9, 2013, Rachael (my care coordinator) called me with news that would change my life forever. A donor had been found, and he was a perfect 10-out-of-10 HLA match. Over the next few weeks, we worked out the timeline and my second (and much more important) transplant was scheduled for May 29, 2013...my re-birthday.
Over the week leading up to my transplant, I was given very high-dose chemotherapy to completely wipe out my own marrow. Then on the morning of May 29, representatives from the American Red Cross walked into my room with your frozen stem cells. They thawed them out at my bedside with a special machine, hooked them up to my IV, and my new life began. Noelle and I celebrated my rebirth with a little chocolate cake right there in my hospital room. Over the next couple weeks, your stem cells circulated through my blood stream, found their way to my hollowed out bones, set up shop and began to generate bone marrow...good, clean, healthy bone marrow. That marrow produced clean, cancer-free blood for my body for the first time in about a year. I was released to go home on Friday, June 14, just in time for Father's Day.
The next several months were pretty hard. I spent another 3 weeks in the hospital with failing kidneys and liver, and medicines that weren't being filtered out of my system. I don't even remember most of the first 12 days of that hospital stay, as the medicines turned into toxins in my body and reduced my brain activity to only about 1/2 of normal. Following that hospital stay, I needed 4-1/2 months of physical and occupational therapy to help me regain my strength, balance and coordination again. I had to take steroids that caused me to gain a ton of weight and look a little like the Stay Puft Marshmallow Man for the 5 months I had to take them. Gradually, though, I have regained my strength, relative health and a sense of quasi-normalcy.
For now, my...uh...your immune system is still being partially suppressed by a medication called Cyclosporine (Cyclo). With transplants, the donor's immune system can fight against the recipient's body systems like the skin, eyes, GI tract, nervous system, liver, kidneys, etc. It's called Graft vs. Host Disease (GVH or GVHD). While I was in the hospital after receiving your stem cells, I got some GVH of the GI tract that made it very difficult to eat, swallow or digest anything for several days. Over the past few months, as we've been slowly tapering my Cyclo dosage, I've been getting some GVH of the skin, but it's very mild. I've lost the majority of my body hair and my skin gets dry, bumpy and rashy at times. It's nowhere near as bad as it can get. A friend of mine is currently suffering from GVH of the skin, and looks and feels like a burn victim. We hope to have me completely off of the Cyclo within a few months from now so your immune system can begin protecting me the way it protects you.
Overall, I feel pretty darned great. My family is actually on vacation this week in Park City, UT, and we're enjoying ourselves thoroughly. I've been cleared by my doctors to go back to work part time for a while to assess how my energy levels hold up before going back full time. I'm in the interview process with the National Marrow Donor Program (Be The Match) to be hired as their Drive Attendant for the state of Utah. I'm already a Volunteer Ambassador, and have run three marrow donor recruitment drives already. Now, I'd be paid to do what I've been doing as a volunteer. I decided after learning that Be The Match had provided my donor for me that I wanted to give back to the organization that had given me my life. How cool that they're willing to pay me for what I've already been willing to do as a volunteer.
Anyway, since September of 2012, shortly before my diagnosis came, I've been keeping a blog to chronicle my thoughts, feelings and experiences as I've battled for my life. If you'd like to read any of it, here's the link: http://philpottsfight.blogspot.com. I'm also on Facebook: https://www.facebook.com/philpottdad.
I'm sorry this email is so long, but I wanted you to know what my path has been like and what your part in it has been. Without you, my chances of surviving my leukemia were basically nonexistent. With you and your stem cells, I have the chance of living for years or even decades beyond today. Being able to thank you for that gift is exactly why I have been so anxious to reach my first "transplantiversary" (transplant anniversary) and request your contact information. I would be thrilled to learn more about you, as well. All I've known until now is that my donor was a 29-year old male at the time of his donation. Now I have your name address, email and phone number. What else can you tell me about yourself? Married? Kids? If so, please don't be shy to tell your family you're a hero. =0) Also, I'd be interested to know what led you to joining the donor registry.
Well, I guess that's about the longest "introductory" email I've ever written. I'll sign off for now, and hope you're well and gratified to know that you've made an immeasurable difference in the life of another human being, not to mention the lives of his family and friends. I hope to hear back from you when you can find a moment.
Thank you again for the gift of life.
Sincerely,
John Philpott
I gave him my address and phone number, as well.
With my birthday and Abby's show on Saturday, I'll wrap up a pretty great month. I will have received confirmation that I'm still cancer-free and in remission one year post-transplant, seen my older sister get married to an amazing man, arrived at the precipice of a new and exciting job (more info when it becomes official), completed another year of life, and learned the identity of the previously anonymous man who saved my life. 42 is bound to be a great year. =0)
so happy you are able to contact your donor.... I hope you will be able to stay in contact with him..... wonderful news
ReplyDeleteIt's interesting to me that you wrote this post on MY birthday, so happy birthday to both of us. What wonderful stuff is happening.
ReplyDelete