Back to OSU we Go!

Hello Everyone,

I thought I would give an update to what is going on here at camp Latham! We are traveling down to Columbus, Ohio on Sunday, Nov. 30 to spend an evening with the kids at the Marriott. We are going to show them where I go when visiting the doctors. On Monday, I will be getting a bone marrow biopsy and CT Scan to get a baseline where I am at. We will be returning home Monday after the tests are completed.

Next Thursday, Dec. 4 I will be getting the port put in and my mother is coming in town on Saturday to watch the kids the following week when Tammy and I go back to OSU for the 1st round of treatment.

You might remember that this time I am getting the experimental drugs and have to stay in the hospital for three days in case I grow an extra eye or something.

It is a lot of precaution for hopefully a whole lot of nothing when it comes to side effects.

My spirits are good and I am ready to get this portion of the treatment process done so we can move on to transplant.

It has been nice being home the last few days and I especially like spending time with the kids.

We will keep you posted as to the progress of the treatments.

Thanks

Gary

It's late and I can't sleep!

Hello Everyone,

It is 12:50 am and I can't sleep. I keep thinking about the upcoming treatments and eventually the long awaited stem cell transplant.

It is funny when your up late and have the house to yourself and hearing all the various noises you never hear when the kids are awake and the house is rocking.

Anyways, I wanted to let you know some of the things I have to do before I start the treatments. The first was to get a procedure call EGD, this is when they put a scope down your throat looking for problems. Did that last Tuesday and I still don't feel like myself.

The next procedure is a bone marrow biopsy followed by the CT scan and to wrap it up they now want to insert a "port" (a line that is put into my chest that taps into my main arteries). I will only have this in for about 9 months. :)

I have do all this before I start treatments!

I tell you this because it sucks! I don't like any of it and I am a bit tired of having to put up with it!

But, now that I have vented a bit, I am happy I have options! :)

We all have to do things we don't want to at some point in our lives! Ex. Going off to war, Putting up with a bad boss, dealing with cancer, etc.

What I have learned is I can do one of two things:
1) Feel sorry for myself and complain and make the ones I love feel pity for me
or
2) Man Up and walk with God as I face the challenge.

I choose #2!

I'm going to bed now!

Take care,

Gary

It seems I can't get enough!

Hello Again Everyone,

Sorry, I have taken a few weeks off updating the blog. I was enjoying everyday life! Well, enough of that it seems I can't get enough of the Leukemia stuff.

The leukemia is back and my doctors and I have decided to attack it this time with a clinical triaal which is currently only offered at Ohio State University. I will begin the clinical trial in December.

The clinical trial should help me to get into a remission. The downside is that I have to go to OSU for the treatments. The schedule is fairly aggressive and will require some time away from home while receiving the chemo. The treatment will last up to six months.

We are still planning to do the Stem Cell Transplant using cord blood but will wait until 1) I am in a good remission and 2) the BMT clinical trial is available (paper work issue).

Physically, I still feel fine and am not experiencing any difficulties.

I will still be able to work and do most of my normal activities while going through treatments. I will be more immune suppressed, so, shaking hands and kissing babies will have to stop.

I am almost to the transplant finish line, but have to get myself back into a remission.

I appreciate all the prayers and well wishes, so, keep them coming they really do help!

Take care,

Gary

Happy Birthday!!

It's Tammy.....the blog has not been updated in a long time so I thought I would let you know that Gary turned 42 today!! He celebrated by eating a giant hamburger cake.

Craig is missing in the photo because he is in Washington DC on an 8th grade school trip. He just called for our nightly update and sounds pretty tired- he is seeing lots of sights.

Scott's football team made it to the Superbowl (the championship game) The game is tomorrow afternoon...Go Bobcats!

Hannah has her first volleyball game tomorrow. She was just chosen as student of the month in gym class.

Gary is feeling pretty good. He has noticed some of his lymph nodes starting to swell. We travel to OSU on Monday. On Tuesday he is going to have a EGD procedure to enlarge his narrow esophagus. It is supposed to be a simple procedure which he has avoided the last forty years.

That's enough news for now.

Tammy

A Football Weekend!

Hello Everyone,

I have been at football games all day long today and would like to report that Scott's team won 24 to 12 and Craig's team will get them next time.

Wow, how one week can change everything! If you read the previous posting you now realize my OSU doctors want to wait until next year before doing the transplant. Just so you know that is fine by me! I never really wanted to do the transplant but thought that if it could offer a cure that I just might give it a go. Anyways, I will be able to be home for the Holidays! I plan on decorating the house with a whole lot of Christmas lights this year.

The OSU doctors have said my disease is stable which is why they are willing to wait on the transplant. I like stable! Stable is good!

So, if you want to know what I am doing now that I am stable let me tell you. Living my fabulously ordinary life and loving every minute of it.

Here is wishing you a fabulously ordinary life, too!

Thanks for checking in,

Gary

On the Road Again!

We are on our way home from OSU and wanted to give a quick Tammy-style update. The doctors at OSU clearly recommend NOT getting a double cord blood transplant using the procedure followed at University of Minnesota. It has too much risk and not enough success with CLL patients.
A transplant is still recommended but a "mini transplant" not the "full transplant". We feel most comfortable having the transplant at Ohio State with a transplant doctor that specializes in CLL. In order to do a double cord blood transplant at OSU some "paperwork" needs to be approved. This process could take up to 6 months. During this waiting period it would be nice if an adult donor is found. It would also be nice for the CLL to stay in control in Gary's body.
Thats the quick update for now!
Tammy
PS. Gary went on his first business trip since January last week. He forgot/did not pack the Purell. He spent the weekend in bed with a fever and bad cold. He is feeling better today with the help of antibiotics.

Who is in Control?

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

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???

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

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