Well dear family and friends, the call I have been waiting for came this afternoon and I have a potential match! She is considered an 8 out of 8 (or as I like to say a 9.8) She does not match me at the DQ allele level which is debatable for HLA testing. Kim (U of M Nurse Coordinator) said that this is the only permissible mismatch and as good as a 10. There is no increased risk of Graft vs. Host, graft rejection and disease relapse. Now please understand these are all still possibilities, I know this is a risky procedure with no guaranteed outcomes, however now I have a fighting chance of beating this awful disease. AND the second possible perfect donor is being tested today and they (U of M) will have the blood in 2 days. If she is a 10 out of 10, all other things being equal we would go with her.
The current match is another female (which is good) and has only had one pregnancy (which also is a factor) and is 47yrs. old. She is the one who registered in 1994...good for her!
Both of these donors would exceed the 9 out of 10's because they mismatch me at more critical HLA levels.
I cannot tell you the joy I experienced when Kim called me. Do you know that 50% of the people waiting for this phone call receive the opposite news? Devastating...this just makes me more determined than ever that we HAVE to grow the Bone Marrow Registry and educate more people. PLEASE consider one of our swabbing events (I will get the dates on the next post) or send for a kit via bethematch.org. Both will be free, you make make a contribution if you would like, the money goes directly to the Bone Marrow Registry. You actually have a chance to save a life, how exciting would that be? Of all that you have ever accomplished in your life, where would that rank? It only takes 4 swabs, a vial of blood and then 1-2 hours giving your blood, you are back to normal in 1-2 days. It is so easy in 2012 that it is unbelievable. If you are healthy there is no excuse for not registering.
Kim told us that in Germany all young people are swabbed, their registry is so efficient they (the USA) hear from them in 1-2 days and blood is received promptly. So they are not just propping up the Euro but are also saving lives internationally everyday! We here in the USA should be as prompt and efficient as the Germans! Don't be lazy thinkers and procrastinate, don't think you are too busy...seriously too busy to save a life?
So it looks like this is really going to happen, the question is timing. Some people wait until they are very sick, others go in at an intermediate stage, strong and healthy. I am tending towards the second, if I am going to go for this I want to be healthy and strong. I passed all of my tests with flying colors, she said I am above 100% healthy. Healthy people tolerate the accompanying side effects better.When the second potential perfect donor is tested we will go in for a consult and consider a date.
How can I ever thank all of you enough for your prayers, messages and love? My heart is full and yes, the tears are flowing!
Grace and Peace, Peggy
Tuesday, July 31, 2012
Friday, July 27, 2012
Organ Testing and Donor Processing
Yesterday was a long day. We started at 7:20 am with my echo cardiogram, then on to our Social Work consultation, then lung testing. Good news is the lab tech who tested my lungs said I was far above normal for a woman of "my age". Unless there is a big surprise regarding my heart I think we are in the clear for the organ function tests.
In regards to the donor process, Kate is not a match for me. 3 other possible 9 out of 10's have come in for me. So we have 5 currently being processed. 1, possible 10 out of 10 and 4, possible 9 out of 10. All are unrelated donors from the Bone Marrow Registry. We still have not heard from the other possible 10 out of 10 here in the US and the International Registry that has another possible match for me is very slow and may take 2-3 months to respond. This part of the wait is agonizing and why you must take this seriously if you are a donor. If you are someone's perfect, or near perfect match you MUST be ready to respond. My life and future health depends on someone else taking this to heart and understanding how important their decision is.
We had a long conversation with Kim, my Nurse Coordinator, on all of the possible scenarios with a Bone Marrow/Stem Cell Transplant. The honest assessment is that there are no guarantees of a perfect result. There was some brutal honesty regarding possible outcomes, especially with a mismatched unrelated donor if we have to go that route. I don't really have much of a choice when it comes down to it, I am going to have to go with the best match possible for me and leave the result in God's hands. There are some people who are not willing to take the risk and choose not to have the transplant. I am not going to be one of them. When the time comes I will go for it, knowing that my Redeemer has my future and whatever the result is I will be content. Now if this sounds negative please know that there can be amazing results and I will be content with also. It's just that I have so much information to process right now that my head is spinning!
I see my hematologist on Monday morning and will see what he has to say. I am thinking when all of the samples have been processed and we know what my donor selection is we will consult with the transplant Dr. at U of M, perhaps end of August or first of September. I am hoping for some good guidance at that point although it is always my decision.
So friends that is where we are at. If my perfect donor's blood work comes through with flying colors next week I will surely let you know. It is going to be a perfect weekend in Holland (I am home for 6 days) and I intend to visit all of my favorite restaurants.
Thank you for all of your prayers, cards and emails. They really do lift me up.
Grace and Peace, Peggy
In regards to the donor process, Kate is not a match for me. 3 other possible 9 out of 10's have come in for me. So we have 5 currently being processed. 1, possible 10 out of 10 and 4, possible 9 out of 10. All are unrelated donors from the Bone Marrow Registry. We still have not heard from the other possible 10 out of 10 here in the US and the International Registry that has another possible match for me is very slow and may take 2-3 months to respond. This part of the wait is agonizing and why you must take this seriously if you are a donor. If you are someone's perfect, or near perfect match you MUST be ready to respond. My life and future health depends on someone else taking this to heart and understanding how important their decision is.
We had a long conversation with Kim, my Nurse Coordinator, on all of the possible scenarios with a Bone Marrow/Stem Cell Transplant. The honest assessment is that there are no guarantees of a perfect result. There was some brutal honesty regarding possible outcomes, especially with a mismatched unrelated donor if we have to go that route. I don't really have much of a choice when it comes down to it, I am going to have to go with the best match possible for me and leave the result in God's hands. There are some people who are not willing to take the risk and choose not to have the transplant. I am not going to be one of them. When the time comes I will go for it, knowing that my Redeemer has my future and whatever the result is I will be content. Now if this sounds negative please know that there can be amazing results and I will be content with also. It's just that I have so much information to process right now that my head is spinning!
I see my hematologist on Monday morning and will see what he has to say. I am thinking when all of the samples have been processed and we know what my donor selection is we will consult with the transplant Dr. at U of M, perhaps end of August or first of September. I am hoping for some good guidance at that point although it is always my decision.
So friends that is where we are at. If my perfect donor's blood work comes through with flying colors next week I will surely let you know. It is going to be a perfect weekend in Holland (I am home for 6 days) and I intend to visit all of my favorite restaurants.
Thank you for all of your prayers, cards and emails. They really do lift me up.
Grace and Peace, Peggy
Wednesday, July 18, 2012
Hopeful
In an effort to update all of you I do have a bit of news. I spoke with my Nurse Coordinator's secretary this morning to set up my appointments for next week. Next Thursday we start at 7:30 am with all of my organ testing. The somewhat unexpected news (at least for me) is that U of M is expecting a blood sample next week from one of my potential donors from the Public Registry. What does that mean? That means one of the two possible matches for me has answered the call and is willing to be tested. We are still a long ways from finding a "match" but it is a hopeful step in the right direction. I don't have any other information regarding the other donor. Kim, my Nurse Coordinator is on vacation this week, so I will get more details from her next week.
In other news, the sun is shining in the UP with temps in the high 70's. I have already walked the lake this morning with Jen, Sarah and Beth. We are going to see if we have some young skiers this afternoon. I observe from either the deck or the cottage. The sun does not seem to be my friend this summer, it really drains me.
Kate and the boys have returned to Holland. Kate had her blood work done yesterday to see if she is a possible 9 out of 10 for me. All blood work takes about 10 days at the U of M Lab. It would be nice to have a good 9 out of 10 in our pocket, time will tell. We were told it would be one in a million for one of the girls to be a donor yet Den and I had enough antigens alike to make it worth testing them.
I spoke with my dentist's office yesterday and we are going to host a HLA swabbing event at Dr. Stout and Dr. Gordon's office in Holland, August 21 from 2-6. They are sponsoring a blood drive also. We need at least 20 people for Michigan Blood to come. If you are able and willing to come please email me at peggylintemuthfamily@gmail.com to let us know so that we can get a count started.You can give blood and get swabbed in one stop! We are also looking at a later date in October in the Grandville area. Statistically 1 out of 540 people get called for a match. My goal is to get at least 500 people tested so that we can know (statistically speaking) we have helped one other person find their match.That's a healthy goal and I will need your help to reach it. PLEASE contact me at peggylintemuthfamily@gmail.com if you can make the August 21 date.
Again...each day is a blessing and His grace is sufficient.
Grace and Peace, Peggy
In other news, the sun is shining in the UP with temps in the high 70's. I have already walked the lake this morning with Jen, Sarah and Beth. We are going to see if we have some young skiers this afternoon. I observe from either the deck or the cottage. The sun does not seem to be my friend this summer, it really drains me.
Kate and the boys have returned to Holland. Kate had her blood work done yesterday to see if she is a possible 9 out of 10 for me. All blood work takes about 10 days at the U of M Lab. It would be nice to have a good 9 out of 10 in our pocket, time will tell. We were told it would be one in a million for one of the girls to be a donor yet Den and I had enough antigens alike to make it worth testing them.
I spoke with my dentist's office yesterday and we are going to host a HLA swabbing event at Dr. Stout and Dr. Gordon's office in Holland, August 21 from 2-6. They are sponsoring a blood drive also. We need at least 20 people for Michigan Blood to come. If you are able and willing to come please email me at peggylintemuthfamily@gmail.com to let us know so that we can get a count started.You can give blood and get swabbed in one stop! We are also looking at a later date in October in the Grandville area. Statistically 1 out of 540 people get called for a match. My goal is to get at least 500 people tested so that we can know (statistically speaking) we have helped one other person find their match.That's a healthy goal and I will need your help to reach it. PLEASE contact me at peggylintemuthfamily@gmail.com if you can make the August 21 date.
Again...each day is a blessing and His grace is sufficient.
Grace and Peace, Peggy
Wednesday, July 11, 2012
It's Been A Good Day!
Good Evening My Friends,
Today has been an eventful day in many ways. I didn't want to post anything until I knew things had been finalized. My Nurse Coordinator at UofM called me today and let me know that my insurance had FINALLY placed me in network with the University of Michigan Transplant Center. What that means is that I will move to the next step with an appointment at the end of the month to assess my heart and lung function. It also means they will move forward with contacting my potential donors. All I know is that it is two women in the USA. One registered in 1994 and was contacted in 2006 as a potential donor, came in and had her blood drawn. She was released back into the Public Registry without donating. The other one registered last October. It appears as though the second one may match me at a higher level...we shall see. Here's hoping and praying that they will both respond and will be willing to be further tested. They will also pursue the International Donor. That potential match has information at a much lower level but is still a potential. It's crazy to think that out of 20 million people there are only 3 potential matches, but too many people have none!
So clearly those are some big hurdles, yet at the same time the realization that this is probably going to happen hit me hard for a few moments. We all have our journeys through life and it looks as though a Stem Cell Transplant is going to be part of mine. I don't know how much you know about them but for a person who doesn't care for suspense the outcomes can vary greatly. I have to trust that my Redeemer has me in His hand.
I have always believed that the circumstances in our lives dictate what we should do next. My understanding of God's Will in my life is to do the next thing to the best of my ability, whatever the next thing is. For much of my life that has meant caring for my children, cleaning, cooking,being a good wife, coaching to the best of my ability, being the best friend I could be to many of you, then being a good grandma and giving back to a sport that has helped me grow and has defined so many areas of my life.
Now my eyes have been opened to the need to grow the Bone Marrow Registry. There is something wrong that in a country of almost 400 million people there are only 14 million in the US Public Registry! I know the greatest need is to educate people and I am hoping that each of you will help me in this endeavor. If you haven't already taken the time to view the videos linked to this blog please do so. Last night I googled stem cell transplants and found a section regarding donors and their stories...talk about inspiration! After a certain amount of time if both parties agree they can meet each other. How many of us would stand outside of a burning building and not attempt to help someone inside? Would you walk past someone injured? Each one of us would help to the best of our ability and yet many of you have the ability to save someone's life, what an amazing opportunity at such a small cost to you. I hope many of you join us in an effort to grow the Public Registry. You may contact BeTheMatch.com for a swabbing kit at no cost to you. We will be hosting a swabbing event in October, in the GR area. Time and date TBA. Again you may make a donation if you wish but if not the cost of the event will be covered.
I am not asking for myself. When I spoke to my Nurse Coordinator she said the reality of someone coming into the registry and being a match for me is minimal. I just know there is someone else out there that we are to give a second chance to. I don't know if it is someone's child, mother, father or grandparent but I know that person is there and needs our help. I also know that I can't do this alone and that I need your help. If you know me you know I prefer to do things on my own however this will be more successful as a team effort. I thank you in advance for your efforts. I will not be shy about letting you know exactly how and when you can help!
I hope your summer is going as wonderful as mine. We are having lots of family time at the cottage and the weather in the UP has been spectacular. I am not tubing or 4wheeling this summer, I do take naps which I have never done in the past. I am able to take lengthy walks each evening with my daughters. At the moment I am sporting quite the shiner as one of my grandchildren accidentally bumped me in the eye! I am on my second book. Life is good! I have always struggled with the concept of "blessings" and believe they are not something we can achieve for ourselves. I define a blessing as the deepest desire of our heart that we cannot fulfill on our own. For me, my family is my greatest blessing and they are really rising to the occasion.
I will update again when we get more information. Thanks for listening...thanks for your many messages. Thanks for being such great friends.
Grace and Peace, Peggy
Today has been an eventful day in many ways. I didn't want to post anything until I knew things had been finalized. My Nurse Coordinator at UofM called me today and let me know that my insurance had FINALLY placed me in network with the University of Michigan Transplant Center. What that means is that I will move to the next step with an appointment at the end of the month to assess my heart and lung function. It also means they will move forward with contacting my potential donors. All I know is that it is two women in the USA. One registered in 1994 and was contacted in 2006 as a potential donor, came in and had her blood drawn. She was released back into the Public Registry without donating. The other one registered last October. It appears as though the second one may match me at a higher level...we shall see. Here's hoping and praying that they will both respond and will be willing to be further tested. They will also pursue the International Donor. That potential match has information at a much lower level but is still a potential. It's crazy to think that out of 20 million people there are only 3 potential matches, but too many people have none!
So clearly those are some big hurdles, yet at the same time the realization that this is probably going to happen hit me hard for a few moments. We all have our journeys through life and it looks as though a Stem Cell Transplant is going to be part of mine. I don't know how much you know about them but for a person who doesn't care for suspense the outcomes can vary greatly. I have to trust that my Redeemer has me in His hand.
I have always believed that the circumstances in our lives dictate what we should do next. My understanding of God's Will in my life is to do the next thing to the best of my ability, whatever the next thing is. For much of my life that has meant caring for my children, cleaning, cooking,being a good wife, coaching to the best of my ability, being the best friend I could be to many of you, then being a good grandma and giving back to a sport that has helped me grow and has defined so many areas of my life.
Now my eyes have been opened to the need to grow the Bone Marrow Registry. There is something wrong that in a country of almost 400 million people there are only 14 million in the US Public Registry! I know the greatest need is to educate people and I am hoping that each of you will help me in this endeavor. If you haven't already taken the time to view the videos linked to this blog please do so. Last night I googled stem cell transplants and found a section regarding donors and their stories...talk about inspiration! After a certain amount of time if both parties agree they can meet each other. How many of us would stand outside of a burning building and not attempt to help someone inside? Would you walk past someone injured? Each one of us would help to the best of our ability and yet many of you have the ability to save someone's life, what an amazing opportunity at such a small cost to you. I hope many of you join us in an effort to grow the Public Registry. You may contact BeTheMatch.com for a swabbing kit at no cost to you. We will be hosting a swabbing event in October, in the GR area. Time and date TBA. Again you may make a donation if you wish but if not the cost of the event will be covered.
I am not asking for myself. When I spoke to my Nurse Coordinator she said the reality of someone coming into the registry and being a match for me is minimal. I just know there is someone else out there that we are to give a second chance to. I don't know if it is someone's child, mother, father or grandparent but I know that person is there and needs our help. I also know that I can't do this alone and that I need your help. If you know me you know I prefer to do things on my own however this will be more successful as a team effort. I thank you in advance for your efforts. I will not be shy about letting you know exactly how and when you can help!
I hope your summer is going as wonderful as mine. We are having lots of family time at the cottage and the weather in the UP has been spectacular. I am not tubing or 4wheeling this summer, I do take naps which I have never done in the past. I am able to take lengthy walks each evening with my daughters. At the moment I am sporting quite the shiner as one of my grandchildren accidentally bumped me in the eye! I am on my second book. Life is good! I have always struggled with the concept of "blessings" and believe they are not something we can achieve for ourselves. I define a blessing as the deepest desire of our heart that we cannot fulfill on our own. For me, my family is my greatest blessing and they are really rising to the occasion.
I will update again when we get more information. Thanks for listening...thanks for your many messages. Thanks for being such great friends.
Grace and Peace, Peggy
Tuesday, July 10, 2012
Donor Update
We received the call we have been waiting for. Here are the facts...
Once we get the approval from insurance Mom will head to U of M to have her organ functioning tests completed as well as another round of blood work. Before we left for the cottage mom's blood work stabilized, we were told this could happen. Hopefully this will be the case again and we have time to search for her donor.
We are soaking in lots of family time, crazy cousin time and the most perfect weather at the lake.
Thank you to all of our family and friends for your support. We love you all. If you haven't yet gone online to Be The Match, do it today! We ordered Chad's kit and it was delivered to our house within a couple of days. It's so easy!
Beth
- Gary, mom's brother, is not a match.
- Out of the 20 million people in the National and International bone marrow bank there are two people in the United States that may be a perfect stem cell match for mom. One person in another country may also be a perfect match, 10 out of 10.
- Insurance has not yet approved U of M to contact these three people. We are hoping they will grant approval within the day so that mom's social worker can locate these individuals.
- When we went to U of M they typed Dad to see if he and mom had similar enough antigens to test the girls. Crazy enough, they do. This means that Jen, Sarah and Kate will be tested if the three perfect matches do not pan out. There is a chance that one of them could be a 9 out of 10. We know that they will not be a 10 out of 10, but there is a chance they could be a 9 out of 10.
- We sent my typing (Beth) to a private lab in Seattle when mom was diagnosed at the beginning of June because Chad and I were going through another round of IVF. We found out yesterday that I am not a match to mom.
- In addition to the three people that could be a perfect match there are an additional six people in the United States that could be a 9 out of 10. If Jen, Sarah and Kate are a 9 out of 10 they will use their stem cells rather than that of a stranger.
Once we get the approval from insurance Mom will head to U of M to have her organ functioning tests completed as well as another round of blood work. Before we left for the cottage mom's blood work stabilized, we were told this could happen. Hopefully this will be the case again and we have time to search for her donor.
We are soaking in lots of family time, crazy cousin time and the most perfect weather at the lake.
Thank you to all of our family and friends for your support. We love you all. If you haven't yet gone online to Be The Match, do it today! We ordered Chad's kit and it was delivered to our house within a couple of days. It's so easy!
Beth
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