November 24, 2004 It is the day before Thanksgiving and Deb and I are at Mayo to talk over the results of my bone marrow transplant. It is confirmed, I have the deadly disease Myelodysplasia (MDS). The doctor is very calm as he explains my possible options. He barely mentions the option of doing nothing. He hints that now that I am diagnosed, he knows my MDS will continue to worsen and my hemoglobin will continue to be a problem necessitating more and increasing transfusions. He says that my white blood level will continue to be too low to travel, be in large crowds and will most likely end up with me getting very sick as I am so susceptible. In addition, he believes my platelet levels may begin to fall, causing me to bleed without stopping easily. The prognosis of doing nothing suggests a live span of about six months. Option two is not too much better. They refer to it as "supportive treatment". I would continue to receive transfusions as needed and with almost certain complications. In addition, I could begin treatment of blood producing booster drugs and maybe even some experimental drugs. With this option, he said I may live ten years (I found out later this option may give me as few as 2 1/2 years). Option three provides hope and the only know cure for MDS - a bone marrow transplant.
A bone marrow transplant is really not replacing all my bone marrow. It is really a replacement of my blood producing stem cells. The first step is a very heavy dose of chemotherapy and possibly radiation to kill all the current stem cells. This only lasts about five days. Unfortunately, it also kills any fast growing cells. This means I will lose all of my hair and will most likely get sores from my mouth to my stomach as these are also fast growing cells. After chemo, I have one day to flush the chemo from my body and I receive my new stem cells the next day.
Where do I get stem cells? The best possible donors are a person's siblings. I am lucky to have four siblings that each have a 25% chance of being a perfect match. If we find a match, the donor's stem cells are "harvested" from their blood. The donor takes blood cell producing booster medication for about a week prior to donating. The harvesting is done in a process like giving blood, except the blood goes out to machine that separates the stem cells and then pumps the remaining blood cells back into the donor. You see, some of your stem cells are just riding around in your blood instead of holding up in your bone marrow. The booster drugs force some of the stems cells out of the bone marrow to cruise the blood stream.
I receive the stem cells just like a blood transfusion. During the time between the chemo and my new stem cells taking hold, I am very susceptible to any disease. Therefore, I must stay within ten minutes of the hospital for about three months. If all goes well, I will be cured from the disease in about three months and have a clean bill of health in about one year.
The hematologist then introduced Deb and I to the bone marrow transplant doctor. He explained that my next step is to ask each of my siblings if they would be willing to be tested as a bone marrow donor match for me. On the way home from Mayo, I called my sister and my three brothers and asked them to be potential donors. In reality, not only did they say they would be happy to be a donor, each of them asked to be donors before I could even get the question out of my mouth. I cannot thank them enough for offering to participate.
Over the evening, I called each of my five children to explain what was happening. Their love and support, in addition to my primary care giver, Deb, has keep me going.
November 25, 2004 Thanksgiving I had a lot to be thankful for. I am thankful that my incredible doctors have found out what is wrong with me. I am thankful there is a path to recovery and I am ever so thankful that my own siblings have agreed to have a stake in my recovery. And more than I can put in words, I am thankful for Deb, my incredibly supportive wife, my five terrific kids, a loving family and an enormous host of friends (you fit one of these) that have taken the time to care, share, and pray for my health. I am thankful and privileged to know each of you. I am also thankful that I am not working full time and have the time to devote to my disease.
November 26, 2004 I called Mayo and told them that my siblings were all willing to be tested as donor matches. They explained that the blood kits would not be sent out until Monday or Tuesday of the following week.
November 29 - December 1, 2004 Waiting and waiting for the blood kits to show up. It turned out I even had a wrong address for one of my siblings which delayed the process another day.
December 1, 2004 Deb and I went to my local hematologist's office and had my blood checked. My hemoglobin was lower, but not to the point of needing a transfusion. We talked about choosing between Mayo and the UofM hospitals for the bone marrow transplant (BMT). His office will set up a referral to the UofM and set up an appointment for us to visit their facility. He also prescribed a shot of Procit, a drug to hopefully boost blood production and lessen my need for transfusions prior to the BMT.
December 2, 2004 My sister, Molly, had some conflicts the following week to get her blood drawn. So, today she DROVE to Mayo to give her blood for matching. Needless to say, her sacrifice in time and energy made her sample the first to arrive at Mayo for testing. Deb and I drove to Mayo today also. We met with the bone marrow transplant (BMT) specialist and he described that although my BMT will be a battle for me, I am a perfect patient for the procedure and that having four siblings should help find a donor. Our next steps are to find a donor and decide whether to have the procedure done at Mayo or the University of Minnesota, which is another very good transplant center. Our Mayo doctor said he would support us regardless of our decision. Deb and I also had a nice visit to the BMT ward at Methodist Hospital where I would be if we choose Mayo. We met a very kind nurse there and he walked us through the BMT steps in general terms. It began to feel very real for Deb and I and was a very emotional experience. We also checked out some local apartments as we would have to stay in Rochester for about three months if we choose Mayo.
December 7, 2004 All of my siblings bone marrow samples have been delivered to Mayo. I will know in a matter of days if we have any stem cell matches.
December 8, 2004 Went to local hematologist's office for my weekly Procit shot and blood check. My hemoglobin had reached 7.3, time for another blood transfusion. It was scheduled for the next day. I was starting to feel pretty tired again.
December 9, 2004 I received another two units of blood in a transfusion. I can't wait for the transfusion results. It always gives me more energy. This is my fourth transfusion and I have received nine units of blood since September 23rd.
December 10, 2004 Mayo Clinic today confirmed that NONE of my siblings are enough of a match to provide me stem cells. So, the next step is to search the national database of donors for a match. In an initial search, Mayo confirmed that there are "a few" matches in the database on a preliminary level. In order to find a perfect match, Mayo needs to analyze my DNA further and do another search within "the few" donors for a perfect match. Mayo will be finished with my DNA analysis by Dec. 15th. By then, we will have decided if I will use Mayo Clinic or the UofM for a complete search for a donor. The coordinator at Mayo said that the fastest timing from the beginning of a search for a donor to the transplant date is two months, but in most cases takes about four months.
December 14, 2004 Deb and I visited UofM hospital (really Fairview-University) today. We met with a transplant doctor and a social worker in the department. They were very kind and informative. Our sole purpose was to compare Mayo to the UofM so we could make a decision on which clinic to choose. We were very impressed with the UofM and proximity to home gives the clinic a big advantage. We decided to sleep on it before deciding.
While at the UofM, I finally asked the big question - What are the chances that an unrelated person can become a stem cell donor for me? The answer is 1 in 100,000. Thank you all for asking to be tested for donors. Testing is pretty expensive, so I do not plan to have any friends tested for a match, considering the odds. But, if you are interested in becoming a possible stem cell donor to anyone, you can read more about it and sign up here: National Marrow Donor Program. One of our friends has already signed up!
December 15, 2004 Deb and I talked over our choice of clinics, writing down pros and cons and researching some information we have received. We finally made a decision that we feel most comfortable with the Mayo Clinic. Although further away, we both came to the same conclusion. When a donor is found and we schedule a transplant, we will be living in Rochester, MN for at least three months. Mayo will begin a search for an unrelated donor as soon as tomorrow. It will most likely take 2-4 months to find a donor and harvest stem cells for me. In the mean time, I will most likely receive additional blood transfusions and other supportive medicine. This website has been up only six days and already had over 200 hits and many have placed entries in the Guest Book. Thank you all for your support!
December 23, 2004 I called Mayo today to see how my donor search is going. We are looking for a donor that matches all 10 of my tested antigens. In some cases, they will accept a donor that matches 9 out of 10 antigens. The donors in the database have not necessarily been tested for all 10 antigens yet. So, the database lists donors that have been tested for 6, 8 or all 10 antigens. The donor program will contact each donor that matches all of their tested antigens to mine. So far, there is one donor listed with a match on 8 antigens. There are several other potential donors that have only 6 antigens listed in the database and match all 6. THIS IS GREAT NEWS! All of these donors will be asked to submit a blood sample for testing all 10 antigens. Mayo told me that they should know more the first week of January.
December 30, 2004 Deb and I and our kids were supposed to be in Mexico this week for our annual Christmas vacation. We had to cancel this year due to my condition, but we traveled all the way to Brooklyn Park, MN (20 miles) with all the kids to the largest indoor water park in... Minnesota for a mini vacation. It was so much fun we almost forgot we weren't in Mexico! I went to the doctor today to check blood levels, etc. It turns out my hemoglobin is low again, so tomorrow I will get my fifth (a fifth on New Year's Eve - how appropriate) blood transfusion.
January 10, 2005 My fifth transfusion went fine and I have a little energy again. I have also met with my local doctor and my Mayo doctor again. My condition is somewhat stabilized for the time being. My red blood count is dropping consistently, requiring a blood transfusion of two units of red cells about every 21 days. My white blood count, while dangerously low, is not dropping any further and my platelet count remains on the low end of normal and not dropping. And the best news is that I have not gotten sick since first seen by a doctor in September! My doctors continue to caution me that I am very susceptible to infection and illness and must remain on guard.
Mayo is continuing to monitor the donor search. My possible matches have probably been contacted now and have been asked to submit blood samples to Mayo for final matching work. My guess is that I will hear more about their progress by the end of this week.
January 12, 2005 I am learning to be careful and avoid germs when in public. I avoid handrails, doorknobs, and in general, touching anything that may have been touched by multiple persons. During the fall months, I did not attend any public sporting events so that I would not be around crowds (don't get me started on the NHL...). And Deb and I cancelled at least four trips because my doctors do not recommend traveling on commercial airlines. But now, being careful to avoid the crowded areas, I have attended two Timberwolves games. I attended a Wolves game tonight with my daughter Megan (she is home on break and Deb was sick) and my father and step-mom. It was great to see some live sports again!
During the game, my father asked me if Deb and I would visit him and my step-mom in Florida if he arranged for a private jet to take us there! I think I was still in shock when I said "for sure"! It was an unbelievable offer. My step-mom mentioned it was her idea. I like how she thinks! Needless to say, Deb was very excited about the prospect of traveling with me again. But, we have some work to do. I will need to time the trip right after a blood transfusion so I have some energy. I will need to get approval from my doctor at Mayo. And we will have to coordinate schedules with my father, step-mom and the private airlines.