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

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.

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.

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

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.

1000 Cranes

I was recently given the gift of 1000 paper cranes from the foreign language students at Novi Meadows School (Hannah's school). They were given with a wish to make me well. It is a Japanese custom to give 1000 hand folded paper cranes to someone who is ill to wish a quick recovery. Our family feels very honored to receive this gift.
We have become friends with a Japanese family in our neighborhood the Nishigaki's. Etsuko has been working for many weeks to create 1000 paper cranes with the same wish of good health. She has made over 220 so far. Her circle of paper cranes hangs next to the cranes
from the Meadows students.
We are so appreciative of all of the support from the community!

The Steroids Are Working!

Hello Everyone,

Yes, the Steroids are working! I just got done taking 4 days worth and basically all my visible lymph nodes are normal size! It is simply amazing that these little pills can basically wipe out months of swelling.

I now get a few days off of the Steroids and then start back up for another 4 days worth. Our goal is simply to blast the cancer out of the lymph system. I will repeat this 4 day on/off cycle two more times.

We are making progress! And my overall health is improving! :)

I have to do this until mid July when we will evaluate my overall (Bone Marrow, Blood, Lymph Nodes) progress.

The ultimate goal is to get into the stem cell transplant process and cure this ugly beast of Leukemia.

I look normal and feel good! I am having a good start to summer and hope that each of you are enjoying yours!

Take care and thanks for checking in,

Gary

The Return of the "Incredible Hulk"

Hello Everyone,

Do I look Green like the "Incredible Hulk"!

You probably guessed it and yes I am now on Steroids!

Not your common garden variety but Heavy Duty Man Size Steroids for the next month!

The goal is to lower the lymph nodes swelling and raise the platelets. In the process I can become:

• Huge like the Hulk :)
• Jittery
• Not able to sleep
• Large not hulk variety but wide (fat)
• etc., etc.

I am happy to be on Steroids because they work and work fast!

We met with our OSU (phone) and UofM (visit) doctors and they want to do this for a month.

After that we are going to re-evaluate and decide what to do next...

This is all good news if you weren't sure. Also, we get to take our vacation in mid-July!

I am getting close to transplant time and speaking of that we have expanded the search, so a donor is probably within the next two months.

On the Family Front

Hannah had her 11th birthday today and is very excited about all her presents.

All the kids are out of school and Summer is here! :)

I will keep you posted on the "Hulk" process and the transplant stuff!

Thanks for checking in...

Gary

Still Waiting!

Hello Everyone,

You might have guessed but a big part of dealing with a disease is waiting.

• Wait for a Doctor's Appointment
• Wait for a Test / Procedure
• Wait for the results
• Wait for insurance
• Wait for your prayers to be answered

What I have been learning throughout this process is Patience!

It is very tough especially being the type of guy who goes nuts if my computer doesn't start fast enough. I live in a world where everything is fast and getting faster. So, it is very difficult to learn, let alone practice, patience from where I sit. But, that is exactly what I have to do.

So, here is the update!

We did not meet with the OSU doctor this week and we do not have an appointment for next week. He is in the process of putting together a plan for me which involves talking with the UofM doctor. We will learn more on Monday!

On the Stem Cell Donor Matching Process we have not found a match. We are still looking but at this point we have to wait for someone to join the registry who matches me. (Someone from Novi would be great!)

My Health, well it is not getting better but seems to have plateaued. Except for me platelets which keep setting new personal lows. Pray that I don't hit 10 or below or I will start getting infusions of platelets. Otherwise, from a way I feel I still go to work and go to the kids activities but I have to avoid large groups of people. (Immune system still low) I have been trying to get more exercise and have been riding my bike a few times each week. I really don't have a lot of extra energy but am able to do normal activities within reason.

My Mental Health, I feel happy and supported by God, Family, and Friends. It is really strange but this time around I have not been fearful but have trusted God throughout this whole process and he has really taken the burden off my shoulders. All of your prayers and help has made a world of difference.

So, I want to ask you to keep praying and to have a great weekend.

Thanks for checking in,

Gary