This week our hospital schedule was great. Tuesday we went to Alta View for Kevin's lab work. Alta View Hospital is literally down the hill a couple of blocks, so that made the visit a quick one. Kevin went in, they took 3 tubes of blood and we were out of there. A record breaking 15 minute visit. Kevin's lab results are now available to us on line the same time they are available to the doctors, so we come home and wait to check the results ourselves. Can't complain about that visit. Today we went to LDS Hospital for labs and a visit with the doctor. On Thursday we saw the results on-line of the Chimerism test, which is the test that shows the percentage of cells that are the new donor cells and what is left of Kevin's cells. We were shocked and didn't dare comment on them until we met with the doctor today to make sure we really saw what we thought we saw. You may remember that we were hoping for a 50/50. What we got was a 97/3. Amazing! 97% donor cells and only 3% of Kevin's cells. We can definitely say that Kevin is engrafting. Today we first spoke with Rachel the nurse that actually gave Kevin the stem cells on transplant day. When she saw the results of the test, her comment was, we need to find out who that donor is and get him to donate more. Once again we think so much about the donor and what he gave and so desire to know him and express our gratitude. We are discovering that what the doctors first tell us is worst case scenario so the 50/50 was a low estimate, but the doctor today told us that he has seen percentages in the 80's but 97 couldn't be better. In addition to that news, Kevin's platelets were up today. They had actually been dropping the past 3 times and there was starting to be some concern that maybe Kevin had a virus or something that was causing that, but today they went back up so that was a good sign. Kevin has had a good week. He spent quite a few hours on the phone and computer doing work. He walked every evening and even increased his walk from two times around the park to three. He's doing about 2 miles each night. Way to go Kevin! The walls of our home are starting to close in around him, and it's getting a little harder to remain in isolation. That is going to be the challenge for the future. It is hard to understand that with such good blood numbers and 97% engraftment that this challenge needs to go on for two more months, but actually the risk of GVH (Graft vs. Host disease) remains for up to 3 years and is more likely in the next few months than it was in the past month. So it is important that Kevin continue to follow the outlined protocol.
When Kevin called his parents and reported the good news of the test results they asked him how that happened and Kevin's comments was "that is easy, there are so many people praying for me". Kevin absolutely knows why the transplant is working. It is the prayers of each of you in his behalf and we want you to know that your prayers are being heard and they are being answered. There is nothing greater that each of you can do for Kevin than to offer your faith and prayers. I have expressed this to many, but I will express it again. There have been many times that we have been given the opportunity to pray for the health and benefit of others around us. We have done so, but often I felt that I wish there was something more that I could do to help. It seemed like my prayers maybe weren't enough. What I haven't felt before was the power of so many people praying for you. It is an overwhelming feeling. And I now, and will forever, know that prayers are enough. Kevin was told he had cancer on a Tuesday evening. We met with the Oncologist on Friday and didn't want to tell anyone about his diagnosis until we really knew what it meant. So for four days Kevin and I carried this burden on our own. Of course we prayed often for peace, understanding and an ability to overcome this challenge, but those four days were long and lonely. After meeting with the oncologist we then began sharing our burden with others. That was not easy to do, but I began to understand our baptismal covenant to "mourn with those that mourn". I began to feel the heavy weight of the burden of cancer become a little lighter. The love and support of others and there willingness to bear this burden with us made us stronger. And of course immediately came the faith and prayers of everyone around us. What a difference that has made. Thank you for your prayers and know that Heavenly Father hears and answers them. The ability to talk with our Heavenly Father and know that he hears us and answers us is one of the sweetest tender mercies we are given.
Friday, June 17, 2011
Monday, June 13, 2011
What I Hope for Most is HOPE!
Today is Kevin's one month anniversary! Hurray!! And he is doing everything he is supposed to be doing at this point in the process. Actually, he is probably better than most. His blood count numbers are continuing to come up and coming up faster than average. This week was all about the neutrophils. They just jumped off the chart. He is in the completely normal range. Neutrophils are our first line of defense against infection or bacteria, so having his neutrophils go up means that he is beginning to have an immune system. Monday and Wednesday were lab work days and Friday was a visit with the doctor. Wednesday and Thursday Kevin felt really good. He worked for several hours each day and he started getting a little tired of the walls of our home. So Kevin had it all planned out. This was going to be his proposal to the doctor, "If my white blood count is up and my neutrophils are completely normal and rising, I have an immune system. Does that mean that I still have to wear this mask every time I come to the hospital and could I maybe go out to a restaurant, or see people?" Well this was going to be an interesting discussion topic. The Bone Marrow Clinic has a team of 6 doctors and 6 Physician Assistants and we have seen all of them. Friday we had a really nice Physician Assistant named Kelly. Kelly explains things on our level so well and she is really easy to discuss things with, so Kevin picked a good day. Kelly asks Kevin the 100 questions, that he answers every time we go, she looked at his lab work and the numbers were good and then Kevin pops the question. Well, Kelly in a really nice way, reiterated he could hopefully do all those things after 100 days. That wasn't really the answer Kevin was looking for. Kelly then explained it this way. Yes, you have an immune system, but it is a brand new immune system. Your immune system is one month old. It has not been exposed to any germs or bacteria and at this point would not be strong enough to take on that fight. So we have to allow that immune system to get stronger before Kevin could possibly be exposed to anything. That makes perfect sense, but not really what Kevin was looking for. On Friday they did take an extra tube of blood and are performing the first test to determine how the donor cells are performing. This test will give us a percentage of how many of the cells in Kevin are his old cells and how many are the new donor cells. We are hoping for a 50/50 at this point in the transplant. The results of that test won't be back for a week or so. The good news of Friday was our visits to the hospital have been reduced to twice a week. So that was reason to be happy. What will we do with all our time?
On transplant day I started reading a book. This book is about a man whose wife passed away and then he lost everything. His business, his home and all his possessions. He starts walking across the country and the story is of his journey. Each chapter of the book has a thought. The one I have liked most is this one, "What I hope for most is hope." Throughout my life I have had many experiences with Faith and good examples around me of Charity. I thought I knew what Hope was, but the past couple years have really taught me about Hope. One of the hardest days since cancer diagnosis was the first time we met with the transplant team. It was a year and a half ago. We had this meeting simply to inform us of future possibilities. We really didn't anticipate Kevin needing a transplant for several years. The discussion with the transplant team was a couple hours long and we came to learn everything we wanted to know and even a lot of things we didn't really want to know about Kevin's disease. This day was filled with odds and statistics and treatments and side affects and all the knowledge this team has learned over the many years of studies, to us they were pretty hard things. To say we left feeling overwhelmed would be an understatement. That meeting was followed-up with a 5 page letter explaining in detail all the things we had discussed. We had the meeting, read the letter and then put it away. We are grateful for the knowledge that science can provide for us, and we trust in the medical transplant team, but if that is all we had, we would feel sad, stressed, overwhelmed and discouraged. Instead what we strive to focus on everyday is having a "perfect brightness of hope" that comes through our Savior, Jesus Christ. I have learned to understand hope more than ever before. Because of the atonement of Jesus Christ, he knows all, has felt all and understands perfectly. We find hope in him and have hope in Heavenly Father's plan for Kevin. This hope brings peace, comfort and understanding. It does feel like perfect brightness, in what could be a dismal situation. I came to find this hope every week in Primary. We are taught to become like little children and I know why. They have perfect faith and their eyes shine with hope. Being in their midst has taught me hope. Yesterday we were singing about faith, and I asked the Jr. Primary kids, why faith is like a little seed. I then had 4 children give me a perfect explanation of what faith is, why we want it, what we have to do to get it and how it can grow. Listening to them each week reminds me that the gospel of Jesus Christ is plain and simple. Being in the presence of these perfect children each week brings me joy and reminds me to have hope. Having a perfect brightness of hope is a tender mercy.
On transplant day I started reading a book. This book is about a man whose wife passed away and then he lost everything. His business, his home and all his possessions. He starts walking across the country and the story is of his journey. Each chapter of the book has a thought. The one I have liked most is this one, "What I hope for most is hope." Throughout my life I have had many experiences with Faith and good examples around me of Charity. I thought I knew what Hope was, but the past couple years have really taught me about Hope. One of the hardest days since cancer diagnosis was the first time we met with the transplant team. It was a year and a half ago. We had this meeting simply to inform us of future possibilities. We really didn't anticipate Kevin needing a transplant for several years. The discussion with the transplant team was a couple hours long and we came to learn everything we wanted to know and even a lot of things we didn't really want to know about Kevin's disease. This day was filled with odds and statistics and treatments and side affects and all the knowledge this team has learned over the many years of studies, to us they were pretty hard things. To say we left feeling overwhelmed would be an understatement. That meeting was followed-up with a 5 page letter explaining in detail all the things we had discussed. We had the meeting, read the letter and then put it away. We are grateful for the knowledge that science can provide for us, and we trust in the medical transplant team, but if that is all we had, we would feel sad, stressed, overwhelmed and discouraged. Instead what we strive to focus on everyday is having a "perfect brightness of hope" that comes through our Savior, Jesus Christ. I have learned to understand hope more than ever before. Because of the atonement of Jesus Christ, he knows all, has felt all and understands perfectly. We find hope in him and have hope in Heavenly Father's plan for Kevin. This hope brings peace, comfort and understanding. It does feel like perfect brightness, in what could be a dismal situation. I came to find this hope every week in Primary. We are taught to become like little children and I know why. They have perfect faith and their eyes shine with hope. Being in their midst has taught me hope. Yesterday we were singing about faith, and I asked the Jr. Primary kids, why faith is like a little seed. I then had 4 children give me a perfect explanation of what faith is, why we want it, what we have to do to get it and how it can grow. Listening to them each week reminds me that the gospel of Jesus Christ is plain and simple. Being in the presence of these perfect children each week brings me joy and reminds me to have hope. Having a perfect brightness of hope is a tender mercy.
Monday, June 6, 2011
Miracle of Levaquin
Last week was a pretty crazy week. Monday, Wednesday and Friday were regular hospital visits. Thursday was Tiff's last day of school and I was able to go to her school for the dance festival. She was in charge of teaching the 2nd grade dance and they were darling as you would expect. Friday and Saturday Brandon had a basketball tournament in Payson so I left Tiff and Meg in charge of Kevin and watched Brandon play some basketball. It has been a busy week, but a good week. Kevin's response to how he is doing this week has been, "Things are going as scheduled." We recognize this transplant as a process and the process is going well. The lab work this week all had good results. The red and white blood cell count is coming up. His platelets remain good and Friday and today his neutrophils took a big jump. Friday the count was 1,000 and today they were 2,500, which is actually in the normal range. Kevin is impressing everyone with his lab work. All of these numbers are an indication that the new stem cells are engrafting and the rise in the neutrophils means Kevin is starting to have an immune system which is great. He is still having some slight side effects from the magnesium he takes and they may decide to give him that medicine through the central line every day instead of a pill, but we are going to wait until Wednesday and see how that is going. On Friday they will take an extra tube of blood to run the first test to see how many of his cells are his and how many of his cells are the donor cells. At this point we hope to have a 50-50% ratio. It will take several days for the results of that test to come back, but we are hopeful for good results. Kevin feels good. He wishes he had more energy, but he has gone on a walk a few times this week. We drive Kevin to a park away from our house, where we don't know anyone and he walks around the trail. It isn't being outdoors that is a problem, it is people. We are the one's that carry the germs and bacteria. On Friday, when Tiff and Megan were in charge of they called me to report that he had been fed and walked. I had to ask them if they were talking about the dog or their dad. They told me both. Kevin is doing well!
Today I think about where we were a year ago. Last year on this date, we were in the emergency room. In June of 2009 Kevin was receiving chemo but we were able to travel to Santiago, Chile to pick-up Tiff from her mission. That trip was a miracle in itself that maybe I'll write about one day, but at the time Dr. Frame had us fill a prescription of Levaquin. Levaquin is a heavy duty antibiotic for Kevin to take in case he came down with a fever which would be an indication of an infection. We took the prescription with us to Santiago and then again last May when our family took a trip to Mexico. Kevin never needed the prescription, but we kept it in the cupboard. Last June, Kevin was to again have chemo in a few days and he wasn't feeling to well. He thought, I'll just take this antibiotic and I'll feel better and stay on track with the chemo. He took one pill that night before he went to bed. The next he came home from work and I asked him about a rash on his arms. He hadn't even noticed it, but he told me about taking that medicine. He then said that his throat was a little sore and scratchy. I knew that strep throat was going around and I told him we needed to go to instacare to get a strep test. We did and it wasn't strep. The doctor thought it might be a reaction to the Levaquin, but was surprised that one pill would do that. The next morning he woke up and his entire body was covered with the rash and his fever was up to 101. We called the oncologist and he told us if the fever got to 103, we needed to go the emergency room. That evening the fever was at 104, the rash was all over, his throat was sore and we were at the emergency room. They dripped benadryl and fluids and still couldn't believe that one pill could cause such a severe reaction. They kept him a few hours and sent him home. Over the course of the next couple of weeks, Kevin's entire body reacted to this drug. He ran a high fever, he had sores in his mouth, his hands and feet were so swollen he couldn't wear shoes, his skin peeled off all over his body; it was as if that one pill had burned his entire body from the inside out. Dr. Frame, Kevin's oncologist couldn't believe it. He said he has never seen that drug cause such a reaction and to think he only took one pill. Of course I spent those couple of weeks asking Kevin, why did you randomly take that pill. Kevin really didn't have a good answer. We thought the miracle of this experience was that Kevin didn't take that pill while we were out of the country. We just kept asking ourselves what if he had taken it in Santiago, what would we have done. They would have never been able to figure out what was going on. That was a blessing, but the real miracle was realized just before transplant. In our preparation for the transplant, we met with the pharmacist at LDS hospital. She brought in a complete list of medications that Kevin would be required to take and to review the side affects and the purpose of each of them. On the list was Levaquin. We immediately explained that Kevin had a horrible allergic reaction to Levaquin. She was surprised when we told her what happened with one pill. I sat there and thought. This is a miracle. What if we didn't know that Kevin was allergic to Levaquin. He would have started taking this antibiotic the day of the transplant with about 7 other drugs. I can't even imagine what Kevin would have gone through as the medical team tried to figure out what was causing this horrible reaction and even what drug it could have been. Now we know. Now we know why Kevin took that pill on that day. This was such a blessing. As I thought about this miracle, I also came to recognize that Heavenly Father knew a year ago that Kevin would need this transplant. Kevin has inquired of the Lord about every step of his cancer battle. He doesn't make any decisions or have any treatments without asking the Lord if it s right. Kevin has come to know he needed this transplant and the Levaquin miracle was another answer that the Lord knew Kevin would need this transplant and he was watching over Kevin and preparing all things. Miracles are tender mercies that help us to be mindful of the love that Heavenly Father has for us his children. We know he is aware of Kevin and is watching over him.
Today I think about where we were a year ago. Last year on this date, we were in the emergency room. In June of 2009 Kevin was receiving chemo but we were able to travel to Santiago, Chile to pick-up Tiff from her mission. That trip was a miracle in itself that maybe I'll write about one day, but at the time Dr. Frame had us fill a prescription of Levaquin. Levaquin is a heavy duty antibiotic for Kevin to take in case he came down with a fever which would be an indication of an infection. We took the prescription with us to Santiago and then again last May when our family took a trip to Mexico. Kevin never needed the prescription, but we kept it in the cupboard. Last June, Kevin was to again have chemo in a few days and he wasn't feeling to well. He thought, I'll just take this antibiotic and I'll feel better and stay on track with the chemo. He took one pill that night before he went to bed. The next he came home from work and I asked him about a rash on his arms. He hadn't even noticed it, but he told me about taking that medicine. He then said that his throat was a little sore and scratchy. I knew that strep throat was going around and I told him we needed to go to instacare to get a strep test. We did and it wasn't strep. The doctor thought it might be a reaction to the Levaquin, but was surprised that one pill would do that. The next morning he woke up and his entire body was covered with the rash and his fever was up to 101. We called the oncologist and he told us if the fever got to 103, we needed to go the emergency room. That evening the fever was at 104, the rash was all over, his throat was sore and we were at the emergency room. They dripped benadryl and fluids and still couldn't believe that one pill could cause such a severe reaction. They kept him a few hours and sent him home. Over the course of the next couple of weeks, Kevin's entire body reacted to this drug. He ran a high fever, he had sores in his mouth, his hands and feet were so swollen he couldn't wear shoes, his skin peeled off all over his body; it was as if that one pill had burned his entire body from the inside out. Dr. Frame, Kevin's oncologist couldn't believe it. He said he has never seen that drug cause such a reaction and to think he only took one pill. Of course I spent those couple of weeks asking Kevin, why did you randomly take that pill. Kevin really didn't have a good answer. We thought the miracle of this experience was that Kevin didn't take that pill while we were out of the country. We just kept asking ourselves what if he had taken it in Santiago, what would we have done. They would have never been able to figure out what was going on. That was a blessing, but the real miracle was realized just before transplant. In our preparation for the transplant, we met with the pharmacist at LDS hospital. She brought in a complete list of medications that Kevin would be required to take and to review the side affects and the purpose of each of them. On the list was Levaquin. We immediately explained that Kevin had a horrible allergic reaction to Levaquin. She was surprised when we told her what happened with one pill. I sat there and thought. This is a miracle. What if we didn't know that Kevin was allergic to Levaquin. He would have started taking this antibiotic the day of the transplant with about 7 other drugs. I can't even imagine what Kevin would have gone through as the medical team tried to figure out what was causing this horrible reaction and even what drug it could have been. Now we know. Now we know why Kevin took that pill on that day. This was such a blessing. As I thought about this miracle, I also came to recognize that Heavenly Father knew a year ago that Kevin would need this transplant. Kevin has inquired of the Lord about every step of his cancer battle. He doesn't make any decisions or have any treatments without asking the Lord if it s right. Kevin has come to know he needed this transplant and the Levaquin miracle was another answer that the Lord knew Kevin would need this transplant and he was watching over Kevin and preparing all things. Miracles are tender mercies that help us to be mindful of the love that Heavenly Father has for us his children. We know he is aware of Kevin and is watching over him.
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