Hello Everyone,
As you read in our previous posting, Fork in the Road, we have to make a decision on moving forward with or without the transplant.
I want to let everyone understand that it is a really big decision kinda like Getting Married, Having Kids, etc. in that the decision is permanent. No Going Back, so you want to get it right!
In this case if I get it wrong the results can be very serious (not good) but if we get it right I can be cured of Leukemia!
The doctors do understand a whole lot on this but do not know everything (risk).
After I have been considering all the scenarios it basically reconfirms that I am not in control but He is (GOD).
I have boiled it all down to am I ready to Trust God completely with whatever decision we make.
I would like to ask Everyone to pray that:
1) We listen to what God is telling us
2) We Trust him completely
3) We have success
I, also, think this can apply to all of you!
We meet with OSU doctors on Sept. 29, we will keep you posted.
Thanks for checking in,
Gary
Monday, September 15, 2008
Thursday, September 11, 2008
Fork In The Road
We are nearing the fork in the road. Do we turn right and go for the double cord
blood transplant or turn left and wait for the Leukemia to come back ??
We need to make a decision and at this point are not sure which way to turn.
Yes - Gary is a good candidate for a double cord blood transplant. But the transplant
involves risk and no guaranteed results.
Yes - the CLL is likely to return. When and how aggressively will it return- we don't know.
We are in the process to weighing the options. We will consult again with doctors.
Ultimately the decision is ours....which way to turn???
blood transplant or turn left and wait for the Leukemia to come back ??
We need to make a decision and at this point are not sure which way to turn.
Yes - Gary is a good candidate for a double cord blood transplant. But the transplant
involves risk and no guaranteed results.
Yes - the CLL is likely to return. When and how aggressively will it return- we don't know.
We are in the process to weighing the options. We will consult again with doctors.
Ultimately the decision is ours....which way to turn???
Tuesday, August 26, 2008
Houston we have Platelets and a Match!
Hello Everyone,
Yes, I have finally risen above the 50K level on platelets, 53K to be exact. When it comes to platelets 50K is a threshold of sorts; above 50K and they watch it below 50K and they treat it! We have been juggling cancer and platelet treatments since February.
So, where am I on the old health-o-meter?
I would have to say on a zero to ten scale (ten being Olympic athlete) I am at a solid 7.87658954! :)
Just under: able to run 1 mile, but slightly above: walking briskly for 2.1 miles. :)
Tangent: People have said I have the same characteristics as Michael Phelps' except for the height, swimming talent, web feet, millions of dollars, very short haircut, goofy smile, and a few other items; which is why I thought of the Olympic comparison. Ha Ha :)
Seriously, getting the platelets above 50K is very good and allows me to move into the next phase of treatment!
Yes, we are talking about transplant! We have a few more test to run and if those checkout then I will be ready to go to transplant.
Yesterday, my OSU doctors informed me that they have found a transplant donor match for me.
The match is from two umbilical cord blood samples that some smart parents donated to the National Donor Registry. The frozen umbilical cord blood samples are waiting for some guy like me to come along and need them. So, for $50K dollars you too can have frozen umbilical cord blood.
I am serious about this, it seems crazy but this is the reality we all live in. It appears the umbilical cord blood which is harvested and stored after the baby is born is very rich in stem cells (baby blood cells) and works great for transplants. The problem is the volume of the sample is smaller then what an adult needs so we have to double it which is why you need two cord blood samples. The transplant process is the same after they give me the blood. The transplant process carries more risk of infection but less risk of graft vs host disease. This is a relatively new transplant process so on our OSU doctors recommendations we are going for a second opinion at the University of Minnesota. OSU has only performed a handful of cord blood transplants. But the Golden Gophers have pioneered this type of transplant over the last few years.
Except for the minor side effects of losing all wrinkles, gaining back my hair, developing buns and abs of steel and having the youthful appearance of a 21 year old, I should make it through this difficult procedure. :)
We will not have timing until after I go through the remaining tests. So, you will just have to wait for that nugget of information.
I am not done with this Leukemia stuff just yet and fear the hardest part is still ahead but I feel blessed and know GOD has been working miracles for me every step of the way.
We will keep you informed, so, just check back in once and a while for the latest information...
Thanks for stopping by,
Gary
Yes, I have finally risen above the 50K level on platelets, 53K to be exact. When it comes to platelets 50K is a threshold of sorts; above 50K and they watch it below 50K and they treat it! We have been juggling cancer and platelet treatments since February.
So, where am I on the old health-o-meter?
I would have to say on a zero to ten scale (ten being Olympic athlete) I am at a solid 7.87658954! :)
Just under: able to run 1 mile, but slightly above: walking briskly for 2.1 miles. :)
Tangent: People have said I have the same characteristics as Michael Phelps' except for the height, swimming talent, web feet, millions of dollars, very short haircut, goofy smile, and a few other items; which is why I thought of the Olympic comparison. Ha Ha :)
Seriously, getting the platelets above 50K is very good and allows me to move into the next phase of treatment!
Yes, we are talking about transplant! We have a few more test to run and if those checkout then I will be ready to go to transplant.
Yesterday, my OSU doctors informed me that they have found a transplant donor match for me.
The match is from two umbilical cord blood samples that some smart parents donated to the National Donor Registry. The frozen umbilical cord blood samples are waiting for some guy like me to come along and need them. So, for $50K dollars you too can have frozen umbilical cord blood.
I am serious about this, it seems crazy but this is the reality we all live in. It appears the umbilical cord blood which is harvested and stored after the baby is born is very rich in stem cells (baby blood cells) and works great for transplants. The problem is the volume of the sample is smaller then what an adult needs so we have to double it which is why you need two cord blood samples. The transplant process is the same after they give me the blood. The transplant process carries more risk of infection but less risk of graft vs host disease. This is a relatively new transplant process so on our OSU doctors recommendations we are going for a second opinion at the University of Minnesota. OSU has only performed a handful of cord blood transplants. But the Golden Gophers have pioneered this type of transplant over the last few years.
Except for the minor side effects of losing all wrinkles, gaining back my hair, developing buns and abs of steel and having the youthful appearance of a 21 year old, I should make it through this difficult procedure. :)
We will not have timing until after I go through the remaining tests. So, you will just have to wait for that nugget of information.
I am not done with this Leukemia stuff just yet and fear the hardest part is still ahead but I feel blessed and know GOD has been working miracles for me every step of the way.
We will keep you informed, so, just check back in once and a while for the latest information...
Thanks for stopping by,
Gary
Monday, August 11, 2008
Update - Who's Got Platelets!
Hello Everyone,
I do! Well, I have some platelets that is! I am still low but my platelet level increased this week and I am very happy to tell you that I am now at 33 (normal is 150 to 300).
The goal is to get above 50, at a minimum . I have been taking a drug that is helping to increase the platelets while decreasing the immune system. It appears to be working!
We still have not found a perfect match but continue to rely on God to provide a cure in his time not mine.
I am still walking and trying to get myself into better shape. I want to get buff! :)
I just thought I would share the platelet news.
Still need more but moving in the right direction!
Thanks for you prayers and cards!
Gary
I do! Well, I have some platelets that is! I am still low but my platelet level increased this week and I am very happy to tell you that I am now at 33 (normal is 150 to 300).
The goal is to get above 50, at a minimum . I have been taking a drug that is helping to increase the platelets while decreasing the immune system. It appears to be working!
We still have not found a perfect match but continue to rely on God to provide a cure in his time not mine.
I am still walking and trying to get myself into better shape. I want to get buff! :)
I just thought I would share the platelet news.
Still need more but moving in the right direction!
Thanks for you prayers and cards!
Gary
Wednesday, July 30, 2008
Marrow Donor Drive Saturday
Our friend Jane Maxton (aka Al Brown's sister) has been working very hard to organize a marrow donor drive in Brookville Ohio (near Dayton). It will be held on Saturday August 2nd from 9-1pm at the Brookville First United Methodist Church. Please encourage any friends or relatives living the area that are not already in the registry to attend.
New Shoes
Hi! Gary has been lax in updating the blog so I thought I would give you an update. He has been taking for an oral medication (cyclosporine) for about a week. It is quick and painless much easier than going in for chemo treatments. The goal is to raise his platelets without letting the leukemia to become out of control. This week his platelets went from 11 to 15 but it will take a few weeks to see real improvement. It is still immunosuppressive so he has to be careful and still gets tired quickly.
Now about the new shoes.....Gary decided that he needed new running shoes so he could get serious about exercising. In order to "break them in" we walked around the block (4 mile block) it was long and hot but he made it home. We are on a roll and have been doing 2 mile walks for 3 nights in a row.
Please continue to pray for a well matched donor for Gary, an increase in platlets and his continued strength to keep walking.
Tammy
Now about the new shoes.....Gary decided that he needed new running shoes so he could get serious about exercising. In order to "break them in" we walked around the block (4 mile block) it was long and hot but he made it home. We are on a roll and have been doing 2 mile walks for 3 nights in a row.
Please continue to pray for a well matched donor for Gary, an increase in platlets and his continued strength to keep walking.
Tammy
Monday, July 21, 2008
OSU Update
We meet with the doctors at Ohio State today. I am actually updating this in the car on the drive home. Although the doctors feel that Gary is "ready" for a stem cell transplant a well matched donor has not been identified. The success of a transplant depends on a good match so we unanimously decided wait until a great match is found.
His platelets are still very low (11 today) so he is going to take an oral drug which we hope will help to raise the platelets. This drug still has the same side effects as chemotherapy of lowering the immune system so he needs to be careful not to get any infections (he will keep the Purell in his pocket) At this point the plan is to take the drug for 5 weeks and see if the platelets increase.
Overall Gary feels pretty good. He has a great desire to exercise(at least he talks about it frequently) and eat well he just needs to work harder on the execution of that desire :)
We ask for your continued prayers to keep Gary strong and infection free and for a perfectly matched donor.
His platelets are still very low (11 today) so he is going to take an oral drug which we hope will help to raise the platelets. This drug still has the same side effects as chemotherapy of lowering the immune system so he needs to be careful not to get any infections (he will keep the Purell in his pocket) At this point the plan is to take the drug for 5 weeks and see if the platelets increase.
Overall Gary feels pretty good. He has a great desire to exercise(at least he talks about it frequently) and eat well he just needs to work harder on the execution of that desire :)
We ask for your continued prayers to keep Gary strong and infection free and for a perfectly matched donor.
Williamsburg Trip
We had a great week in Williamsburg Virginia. We enjoyed being taken back into the
1770's seeing the buildings and especially listening to Thomas Jefferson and George Washington. We also spent some time at Busch Gardens and Water Country USA. Tammy's parents spent the week with us- it was great time.
Unfortunately on the drive home we had a tire blowout on the Pennsylvania turnpike which
delayed our trip a few hours.
The day after we got home Craig and Hannah went to Evart Michigan to spend a week at Springhill Camp. They were so excited. Scott is looking forward to being the "only kid" for
the week and Tammy missed them the minute we drove out of camp.
1770's seeing the buildings and especially listening to Thomas Jefferson and George Washington. We also spent some time at Busch Gardens and Water Country USA. Tammy's parents spent the week with us- it was great time.
Unfortunately on the drive home we had a tire blowout on the Pennsylvania turnpike which
delayed our trip a few hours.
The day after we got home Craig and Hannah went to Evart Michigan to spend a week at Springhill Camp. They were so excited. Scott is looking forward to being the "only kid" for
the week and Tammy missed them the minute we drove out of camp.
Thursday, July 3, 2008
Good News!
Hello Everyone,
We have good news! Well basically my bone marrow has little cancer burdened, no cancer in peripheral blood, and lymph nodes are clean and normal size.
So, we got what we wanted and that is the Leukemia is beat down! Although we know it will not last very long! Because of the nature of Leukemia the cancer will begin to grow again.
So, What is next!
1) I am now ready for the Transplant but must wait until we find a "Perfect or Nearly Perfect Match"
2) Since, we know the "Cancer" is not cured until after a Transplant I am going to enter into a clinical study at Ohio State University! I will be meeting with the OSU team at the end of July. This clinical study has seen some tremendous results and Dr. Bryd feels it would help me get into a "Durable Remission" which allows us to wait for a "Perfect Match" for the transplant.
Both, Tammy and I are very happy with the progress I have made against this Leukemia. Over the next few months my body will begin to recover back to normal levels as the bone marrow recovers it normal operating processes. (They say it can take 6 to 12 months to fully recover!)
Personally I feel very blessed to have gotten this far! It has been a while since I was able to feel good about my body!
I want to Thank Everyone for your continued prayers and words of encouragement it has and always helps me everyday! Also, I would like to ask you to pray for a "Perfect Match" so we can put the Leukemia behind us permanently!
I hope you have a GREAT 4th of July, My Family and I will!
Thanks for checking in,
Gary
We have good news! Well basically my bone marrow has little cancer burdened, no cancer in peripheral blood, and lymph nodes are clean and normal size.
So, we got what we wanted and that is the Leukemia is beat down! Although we know it will not last very long! Because of the nature of Leukemia the cancer will begin to grow again.
So, What is next!
1) I am now ready for the Transplant but must wait until we find a "Perfect or Nearly Perfect Match"
2) Since, we know the "Cancer" is not cured until after a Transplant I am going to enter into a clinical study at Ohio State University! I will be meeting with the OSU team at the end of July. This clinical study has seen some tremendous results and Dr. Bryd feels it would help me get into a "Durable Remission" which allows us to wait for a "Perfect Match" for the transplant.
Both, Tammy and I are very happy with the progress I have made against this Leukemia. Over the next few months my body will begin to recover back to normal levels as the bone marrow recovers it normal operating processes. (They say it can take 6 to 12 months to fully recover!)
Personally I feel very blessed to have gotten this far! It has been a while since I was able to feel good about my body!
I want to Thank Everyone for your continued prayers and words of encouragement it has and always helps me everyday! Also, I would like to ask you to pray for a "Perfect Match" so we can put the Leukemia behind us permanently!
I hope you have a GREAT 4th of July, My Family and I will!
Thanks for checking in,
Gary
Tuesday, July 1, 2008
Donor Drive Update
Here is an update on the stem cell transplant donor drive. We had about 400 potential donors at the drive held in Novi on May 18th. As of today July 2, the new donors are in the database but they have not been typed (lab still processing). This process should take a few more weeks. New donors will receive a donor card in the mail with their typing. A NMDP representative estimated about 46,000 donors were added to the registry in May with the Thanks Mom campaign (registration fee was waived). A suitable match has not been identified for me as of yet. We are hopeful that when the typing from our drive is in- the perfect donor will be identified.
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