The problem with not writing for several weeks is when I do write, I have a lot to catch up on. I will attempt to explain what has been going on and keep reading because the end will be good news. After 24 days in the hospital and finally able to eat food, Kevin came home and was happy to do so. He came home with several additional medications to solve the problem with GVH and new side effects to deal with. He came home on a Sunday and was happy. Then Monday morning he got up and looked in the mirror and everything wasn't quite so happy any more. The first affect of steroids had swollen his face to something that he didn't recognize when he looked at himself. That wasn't fun. In addition to swelling, he is now diabetic for the duration of the steroids and takes 5-8 insulin shots a day. Steroids also causes loss of muscle and that has caused some pain in his legs. Kevin has been walking every morning to try to keep the problems with his muscles manageable, but stairs are not fun. His new daily routine includes the insulin shots, 30 meds and two IV infusions in his line which take a couple of hours. When we started this routine it seemed like it took all day and now it is pretty routine. The visits to the hospital each week have gone well and have focused on continuing to watch for symptoms of GVH to return and so far no problems. The doctors
started to reduce the steroids and therefore have to watch closely for GVH recurrence. Kevin hit his 100 day mark while in the hospital on August 20th. It was a little uneventful since he was hospitalized and it was apparent that 100 days would not be the end of this journey. When Kevin was released, the doctor indicated that the steroid would further compromise his immune system and he would like Kevin to stay away from work, people and the public for an additional three months. That did not sit very well with Kevin and he told the doctor he would take it one month at a time. The past 30 days have become a little long and each day brings new anxiousness. A couple of weeks after Kevin was home they started scheduling a whole bunch of tests. Before the transplant they conducted a lot of tests for a baseline and at the 100 day mark all the tests would be repeated for comparison. The past few weeks have been filled with these procedures. Today was a big day. Today we met with Dr. Petersen for a complete consultation and test results. Here is where the story gets good. Dr. Petersen started the consultation by saying that this meeting is a bit of a formality because the bottom line is that all the test results are great and everything looks goods. In front of him is a stack of about 50 papers and he refers to them and says, "but since you are here we will go through each of the results". This part was really good for us and I will summarize a bit for you, but this will give you some idea of all the things that are good and in contrast all the things that could have potentially been an issue. Here are the doctors words, kidney and liver functions are excellent, chest x-ray looks good, proteins are good which means you are eating good and absorbing the nutrients you need, pulmonary tests are normal; which is rather unusual for most of our patients, all of your blood counts are fine; platelets are a little low but that is to be expected with all the medications we are giving you. CT and PET scans show no active cancer cells and no problems with the lymph nodes. Your immunoglobin level is actually in the normal range which means your new immune system is beginning to function. The donor engraftment is near complete. This test is called chimerism. Chimerism indicates what portion of Kevin's cells are the donor and what portion are him. The doctor indicated that anything above 95% is considered complete engraftment. His whole blood cells are 97%, his T-cells (which are immune cells) are 91% and his bone marrow chimerism (cells in the bone marrow) are 97% . These numbers mean that the donor engraftment is near complete. At this point the doctor also indicated that GVH disease most likely killed any remaining leukemia cells. Remember that Graft vs. Host disease is the donor cells fighting Kevin's cells to see which one stays. We want donor cells, so GVH does good things, it just has bad side effects. The big picture, no evidence of CLL (chronic lymphocytic leukemia) that long name for the disease Kevin has been fighting. You are considered to be in continuous complete remission. Now for the PLAN! This is where we start to return you to your life, the reason you had a transplant to start with, to return to life and living. Beginning in October you can begin your gradual return to society; work, family, friends, restaurants (that's the one I like) and the public. Here's the important part, WITH CAUTION and WISDOM. Since we are on the verge of cold and flu season your threshold for any symptom is very low and any sign of illness requires you to be checked. Then came the good part, this report is AS GOOD AS IT GETS.
What now. Kevin continues to be on the insulin shots, 30 meds and two IV drips every day. This is needed to maintain the health that Kevin has. We will continue to visit the clinic once a week and have blood tests. The steroids will be tapered over the next two months and the effects of them should then begin to go away. Kevin will stay on medications for rejection and to prevent infections for 6 to 9 months. That all seems simple to us, we can do that.
It goes without saying that Kevin is a happy man. Kevin and Dr. Petersen exchanged a nice, long handshake as Kevin sincerely thanked him and with his eyes a little red expressed his gratitude for the good news. Once again we find ourselves wishing there were words to express our thanks. "Thank you" seems too simple for what Kevin has been given. Today we think about so many people we have to be grateful for. The medical team is the best, but we know that medicine alone has not healed Kevin. Kevin's healing has come from faith, prayers and the power of the priesthood, and the people we love most have brought about that essential part of Kevin's healing.
A couple of months after Kevin was diagnosed our Stake Patriarch came to our home to visit. He brought with him a piece of the Italian marble that was used in building the Draper temple. He had placed vinyl lettering on the piece of marble that said, "When you're ready to learn, the teacher will appear." Patriarch Bringhurst's visit brought comfort and peace to our home and after our discussion with him Kevin and I had a strong desire to be ready to learn the lessons that would be ours through his cancer challenge. Our 2 1/2 year journey has brought more lessons that we could possibly ever imagine and now from the perspective of looking back, we can recognize that these lessons might have not been learned in such a powerful way if we had not been given the opportunity that this challenge has brought to us. During the past couple of years as difficult moments have come we have tried to focus on what we need to learn. We have often talked to the kids about the importance of learning what cancer has to teach us. How tragic would it be to go through this whole experience and not learn the lessons and not come to recognize the teacher. The teacher has been many people that have been there for us and helped us understand this part of our life, but most often the teacher has been our Savior, Jesus Christ. Through the atonement of Jesus Christ, we have come to recognize that Jesus personally knows what our needs our. Kevin knows that his Savior knows what cancer feels like and has blessed him accordingly. Every time someone has asked me how I am doing, I tell them I am good and often they look at me like are you sure. I am sure because my Savior has comforted me every day and every day he has given me reason to find joy and to have hope. Cancer is not a challenge that we would have ever chosen, but we can sincerely say we are grateful for the lessons that cancer has taught us. I have attempted to write about a few of these lessons and I call them tender mercies. Our journey is not over and I hope that there are still lessons to learn and I have not yet written all the important things I need to write, so I know I have a responsibility to continue to record blessings that are ours. I have come to realize that the Lord's hand is in our lives every day, but I also remember that some days I was so busy with life itself that I forgot to look and acknowledge His hand. I am grateful for this time in our lives when I needed to look and acknowledge everyday and everyday a tender mercy is given when we remember to look. Life itself is a tender mercy and today Kevin is grateful for LIFE.
