Monday, May 26, 2008
Update
Just to let you all know, Dad returned to the hospital on Tuesday the 20th for another round of chemo, and then was able to come home today the 26th. Dad has said that this round has been a little harder on him, he has had a slight fever and not felt quite as good but as he said, lots of people would love to feel as bad as he does. Please continue to keep him and mom in your prayers. Dad will return to the hospital at the latest Thursday the 29th or as soon as his blood levels drop. Dad said today he is concentrating on quality of life and making the most of the time he has at home. Sorry it has been so long between posts I will try to update more often. Thank you all!!
Friday, May 16, 2008
Update!!!
The following is an update from Karen for those of you who did not recieve the email.
Dads visit to the hospital went very well, his blood counts were right where they should be and he had the biopsy done. The first results will be in on Monday which is when the team of Dr's plan to have a meeting regarding dads case. Dad will check back into the hospital on Tuesday afternoon for a round of consolidation therapy (chemo) he will be there anywhere from 5 days to 1 month. Some patients go home after the therapy but have to return a week later when the counts start to drop, others go home and stay unless they develop a fever or infection others (usually older) stay in the hospital the entire time.
Lois Fay is a match for the transplant but they are looking at all possibilities and pros and cons of using a related donor versus someone else. Lois Fay will still have to pass the physical and family history prior to the transplant if they choose to use her. One pro of using an unrelated donor is the chance of it coming back is lower than when a related donor is used.
Dads visit to the hospital went very well, his blood counts were right where they should be and he had the biopsy done. The first results will be in on Monday which is when the team of Dr's plan to have a meeting regarding dads case. Dad will check back into the hospital on Tuesday afternoon for a round of consolidation therapy (chemo) he will be there anywhere from 5 days to 1 month. Some patients go home after the therapy but have to return a week later when the counts start to drop, others go home and stay unless they develop a fever or infection others (usually older) stay in the hospital the entire time.
Lois Fay is a match for the transplant but they are looking at all possibilities and pros and cons of using a related donor versus someone else. Lois Fay will still have to pass the physical and family history prior to the transplant if they choose to use her. One pro of using an unrelated donor is the chance of it coming back is lower than when a related donor is used.
Tuesday, May 13, 2008
You can't keep a good man down!
In true Clair Bankhead fashion, Guess who came down with Dan on the farm today?? You guessed it that's right Dad was down here gloved and masked but here all the same. He claimed it was the best therapy he had. He told us he was having a pity party (I thinks he's allowed) but coming down to the farm helped him. The grandkids were excited to see him too, and he was excited to show them his bald head. It was so good to see his spirits up! It's funny what cows and kids can do for a man!!
Monday, May 12, 2008
Good News
Dad is coming home today, Amazing, we thought it would take much longer. However, Dad is a little hesitant about going home though he is worried that he will get sick again and be in worse shape than he is now. So we do still need to remember to be very careful, children and sick adults are still not a good idea. We can still send our love however especially because now Dad has the internet at home. (See what happens when you go in the hospital for a couple of days...mom goes high tech:) ) So he will be able to read the guestbook signatures right from home. Here is the latest picture of dad with a fancy hat that a neighbor made for him. Thank you for all the prayers and support, they must really be working for him to be going home so soon!!
Monday, May 5, 2008
Info on Bone Marrow
The following is information given by Jamie, (dad's grand daughter about bone marrow donation for those of you who are wondering. Thanks Jamie!
Many people have asked me if the office I work in handles bone marrow transplants and unfortunately the answer is no- we do organ and tissue donors & transplants. But I have been able to put together some information about bone marrow transplants (BMT) for those of you who have questions. This can get a little complicated and I’m going to try to explain it the best I can, in as basic terms as I can, so bear with me.
The best news I have is that you do not need to have the same blood type as Grandpa (that’s what he is to me so that’s how I will be referring to him here) to be a bone marrow donor. That said, it is highly unlikely that any of us (children, grandchildren, great-grandchildren) will be compatible matches. Siblings are likely to be the best matches, but another relative matching wouldn’t be unheard of. Now for the not-so-exciting part; a bone marrow donor needs to match exactly 10 specific human leukocyte antigens (HLA). An HLA is one of a group of proteins found on the surface of white blood cells and other cells that play an important part in the body's immune response to foreign substances. Let me give you an example: in organ donation, when we match kidneys to recipients, we look at certain HLAs. If a donor and recipient match the 6 antigens that we look at, we call it a “perfect match” or “zero mismatch”. It is not necessary in kidney donation for all 6 antigens to match in all cases in order for the body not to reject that kidney (through the use of medications and the knowledge of which antigens are compatible with other antigens and such). The majority of organ transplants are not perfect matches. So, as you can see, finding a donor who has all 10 matching antigens is going to be quite a feat…but NOT IMPOSSIBLE!
I’m not sure how Grandpa’s doctors plan to go about testing as I am never there when the doctors come in because (knowing me and my outspoken personality) I’d be all over them like white on rice. I’d like to find out how many family members can be tested by the insurance & what criteria they need to meet before testing could even be started. I wonder if any of the family members, who wish to, could be tested at their own expense if the insurance will not cover it. I suggest none of this be done until Spence & Lois Fay are tested because the doctors believe they are the best chances. After that I believe that anyone in the family who wants to be considered should be able to in some way or another. We just need to discover how to go about doing that.
There is a national bone marrow registry that you can join to be a donor for anyone nationally who needs a transplant. This will be where they find a donor for Grandpa if one isn’t found in the family. The way you join this registry is by logging online or calling on the phone and paying for a test kit. The test kit costs $52 and is sent to your home. Currently it is a cheek swab that you can do yourself, you send it back in and they are able to determine your HLA type & put you on the registry. Should your HLA match someone in need (like Grandpa) you will be called and further evaluation will be done. 10 years ago when I joined the registry it cost $30 and a vial of blood to join so times have changed but the cheek swab at home is so much more convenient. The website www.marrow.org has a ton of great information about bone marrow donation and is also where the registry is kept if you want more information about it. If any of you have specific questions about any of what I have presented here, feel free to email me at jamienewman79gmail.com. (You’ll have to put the @ symbol in yourself when emailing me- I don’t post my email address as a way to avoid spam). Below is a little info that I pulled of the NMDP website about why bone marrow donors are needed and what the donation process entails:
If you match the tissue type of a patient seeking a donor, additional testing will confirm the results. You will meet with donor counselors at the Blood Center who will help you make an informed decision about donating your blood stem cells.
The marrow collection process usually does not require an overnight stay in the hospital. The procedure itself is painless, because it is performed under anesthesia. But, for an average of two weeks following the procedure, most donors experience sore hips and some must restrict their activities. Even with some soreness, most donors report that donating marrow is a very positive experience and that they would be willing to donate again.
The donated marrow is transfused to the patient, whose diseased cells have been destroyed by intensive chemotherapy. In time, the donated marrow engrafts and begins producing healthy blood cells.
Don't forget to look at the new picture of dad below. Have a wonderful day!!
Many people have asked me if the office I work in handles bone marrow transplants and unfortunately the answer is no- we do organ and tissue donors & transplants. But I have been able to put together some information about bone marrow transplants (BMT) for those of you who have questions. This can get a little complicated and I’m going to try to explain it the best I can, in as basic terms as I can, so bear with me.
The best news I have is that you do not need to have the same blood type as Grandpa (that’s what he is to me so that’s how I will be referring to him here) to be a bone marrow donor. That said, it is highly unlikely that any of us (children, grandchildren, great-grandchildren) will be compatible matches. Siblings are likely to be the best matches, but another relative matching wouldn’t be unheard of. Now for the not-so-exciting part; a bone marrow donor needs to match exactly 10 specific human leukocyte antigens (HLA). An HLA is one of a group of proteins found on the surface of white blood cells and other cells that play an important part in the body's immune response to foreign substances. Let me give you an example: in organ donation, when we match kidneys to recipients, we look at certain HLAs. If a donor and recipient match the 6 antigens that we look at, we call it a “perfect match” or “zero mismatch”. It is not necessary in kidney donation for all 6 antigens to match in all cases in order for the body not to reject that kidney (through the use of medications and the knowledge of which antigens are compatible with other antigens and such). The majority of organ transplants are not perfect matches. So, as you can see, finding a donor who has all 10 matching antigens is going to be quite a feat…but NOT IMPOSSIBLE!
I’m not sure how Grandpa’s doctors plan to go about testing as I am never there when the doctors come in because (knowing me and my outspoken personality) I’d be all over them like white on rice. I’d like to find out how many family members can be tested by the insurance & what criteria they need to meet before testing could even be started. I wonder if any of the family members, who wish to, could be tested at their own expense if the insurance will not cover it. I suggest none of this be done until Spence & Lois Fay are tested because the doctors believe they are the best chances. After that I believe that anyone in the family who wants to be considered should be able to in some way or another. We just need to discover how to go about doing that.
There is a national bone marrow registry that you can join to be a donor for anyone nationally who needs a transplant. This will be where they find a donor for Grandpa if one isn’t found in the family. The way you join this registry is by logging online or calling on the phone and paying for a test kit. The test kit costs $52 and is sent to your home. Currently it is a cheek swab that you can do yourself, you send it back in and they are able to determine your HLA type & put you on the registry. Should your HLA match someone in need (like Grandpa) you will be called and further evaluation will be done. 10 years ago when I joined the registry it cost $30 and a vial of blood to join so times have changed but the cheek swab at home is so much more convenient. The website www.marrow.org has a ton of great information about bone marrow donation and is also where the registry is kept if you want more information about it. If any of you have specific questions about any of what I have presented here, feel free to email me at jamienewman79
If you match the tissue type of a patient seeking a donor, additional testing will confirm the results. You will meet with donor counselors at the Blood Center who will help you make an informed decision about donating your blood stem cells.
The marrow collection process usually does not require an overnight stay in the hospital. The procedure itself is painless, because it is performed under anesthesia. But, for an average of two weeks following the procedure, most donors experience sore hips and some must restrict their activities. Even with some soreness, most donors report that donating marrow is a very positive experience and that they would be willing to donate again.
The donated marrow is transfused to the patient, whose diseased cells have been destroyed by intensive chemotherapy. In time, the donated marrow engrafts and begins producing healthy blood cells.
Don't forget to look at the new picture of dad below. Have a wonderful day!!
Sunday, May 4, 2008
Friday, May 2, 2008
Good News
We recieved very good news yesterday, Dad got his results from the first round of Chemo and it WORKED!!! Dad has to go through one more round of a less intense chemo and then wait another sixteen days after that round and some more tests he might be able to do a bone marrow. However as of yet we do not have a donor, in the next of couple of days, Dad's granddaughter Jamie will be letting me know what is involved to donate or find out if you are compatible, for those of you who are interested. We have tested one of dad's brothers and he is not a match. They prefer a sibling but from there they will take a child, or a stranger that is a match. So as soon as I get the info I will post it on here. But today is a good day with lots of good news.
Thursday, May 1, 2008
Well it happened
Well yesterday Clair got a new hair cut. That's right it was starting to fall out and bug him so the nurses took care of the rest. When asked how he was about it, he replied by saying "I never realized I had such a long skinny head." Overall he is feeling okay, he tends to feel sick when he gets platlets or blood but they have medicine for that and get mad at him if he doesn't tell them when he is feeling sick, (which he has done). So for now on we go, the tests to see if he has to have another round of chemo should be back within the next couple of days.
Also the nurses and doctors have asked us to remind everyone to please not bring children up to see Clair. He is doing really well right now and we just want to keep that going, his immune system is still very weak. I know this has been very hard on my kids and I know it is hard on everyone, we have just told them that if we keep Grandpa well, then we will be able to see him sooner, and we have been drawing lots of pictures and writing letters. Grandpa has a board in his room that we hung up on Sunday, that says 'We Love Our Grandpa' and you can color or write anything for him and he can look at it all the time and feel our love. I will update as soon as I get more news.
Also the nurses and doctors have asked us to remind everyone to please not bring children up to see Clair. He is doing really well right now and we just want to keep that going, his immune system is still very weak. I know this has been very hard on my kids and I know it is hard on everyone, we have just told them that if we keep Grandpa well, then we will be able to see him sooner, and we have been drawing lots of pictures and writing letters. Grandpa has a board in his room that we hung up on Sunday, that says 'We Love Our Grandpa' and you can color or write anything for him and he can look at it all the time and feel our love. I will update as soon as I get more news.
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