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Maryland, here we come!

The time has finally come! John/Kay leave Tuesday(tomorrow) for Bethesda, MD to begin procedures that will eventually lead to a bone-marrow transplant. This is taking place at the National Institute of Health. It is a trial-clinical for his type of cancer (T-cell lymphoma), and therefore that is why he is traveling so far. Bone-marrow transplants has proven to be highly successful for other types of cancer.

A donor was found back in December, but it took a little bit to coordinate everything.
The actual transplant will NOT take place just yet. This first week will be tests/procedures to ensure he is still a candidate since this is the first time the doctors have physically seen him and not just his file. The next week will be a dose of chemo. THEN he'll get sent home to soak up the chemo and let it do it's job. THEN back out to MD.

So I'll keep you posted. The immediate concern is getting out there. If you don't know, a HUGE snowstorm is predicted tomorrow. Since they don't check into the clinic until Thursday, they do have a small cushion.

I'm going to hold things down at the homestead in Ludington. :-)

The prayers and positive energy thoughts are much appreciated!
Michelle (daughter #3!)

19 January 2011

Chemo today! My blood count numbers were high enough.
The neurontin injections that I will have to get this weekend (Fri, Sat, Sun) I will be able to get at Memorial Medical Ctr in Ludington. Finally! No more driving all the way to Manistee for a quick shot.
Although WE haven't spoken with coordinator in Bethesda, the cancer clinic here got through. So far the info they got was that the first of February is when we'll be expected out there. NOTHING is set in stone yet as far as when we will travel.
Thank you for the prayers.

Although this chemo doesn't make John feel sick, it wreaks havoc on his blood counts. Hemoglobin drops down easily to an 8. A normal Hgb count for most people should be 12-16. So John got another blood transfusion (2 bags) last Sunday. It really makes a positive difference. The low Hgb makes him very fatigued and just about any activity tires him out. But he's retired, and napping is what retired folk do, right?
Because of the effect on his blood counts (especially the platelets) chemo is only every other Wednesday. Then he gets an injection of Neurontin the Friday, Saturday, Sunday of his chemo week. Since it is such a special, super-duper drug, he's had to drive 30 minutes to the hospital in Manistee to receive it.

Still waiting for word from the folks out in Bethesda for when the bone marrow transplant will take place. The donor has been found, just waiting for the coordination to come all together. Prayers that will happen soon.

This weekend John and Kay will drive to Marquette to finally celebrate Christmas with Johnny. He's finally home from his winter work on the boats. Also, Mya (Johnny's girl) turned 3 this week! So birthday presents will be shared also.

The 2011 plans

John is slotted for a bone marrow transplant sometime in early 2011 (jan or feb). We've known about this possibility for quite a few months but took a while to line up all the game pieces. First, they had to determine that John's heart was healthy enough. Good to go. Then it was time to find a donor. (John's stemcell transplant was his own last year). They first tried his two sisters: Becky and Barb. Unfortunately, they were not compatible. Thank you for trying though Becky & Barb!!! So it was on to the national database. Right away a large handful of donors were hopefuls. Of course it was narrowed down and the actual donor has been determined.

No date has been given to us yet. Likely after the first of the year, more news will be given to us.

What we do know is this: the transplant will take place in Bethesda, Maryland. It'll be a 3 month process. Why is it out there? The procedure is considered trial still for T-cell Lymphoma - John's kind. It is highly successful for B-cell lymphoma and they are trying it for T-cell. So that's why the location is so. John won't necessarily be in the hospital the whole time, but needs to be in the area so he can be monitored by the cancer center.

So lots to come after the first of the year.
Our wish list: please pray for the donor to still be able to help us out; and for John to stay "healthy" until then; and to find a furnished place to stay in the Bethesda area.

regards,
Michelle

Merry Christmas!

Yes, It has been awhile since any of us has posted any news on this blog.
This past summer, it was discovered that the stem-cell transplant did not work. THe doctors considered the cancer "chemo resistent" even.

This fall, a newer chemo drug was found. So John has been taking that. It is not a cure but certainly helps keep the inflicted lymph nodes smaller. Unfortunately, it has it's side-effects. It makes John's platelet counts quite low, along with hemoglobin and such. So he couldn't get chemo every week. They then decided to just administer it every OTHER week so his body could handle it better. This one does not cause hair loss, which is great, because every man in Michigan in November likes to be all scruffy for the big deer hunt - which by the way was a successful hunt this year for John. Yay - there is venison in the freezer.

just another update

So things are going pretty good. I go every 2 weeks to the Cancer Center in Free Soil. This last time, even tho Doc thought my overall numbers weren't too bad, she wants to take a deeper look. So they will be extracting some bone marrow and testing that instead of just testing blood. I had this done once last year. It's a lovely procedure - I highly recommend it to anyone who enjoys such pain. (sorry, just a little humor).
Next month I will be having my 6 month pet scan at St. Mary's in Grand Rapids and check-up down in Detroit at Karmanos.

Still regaining strength, balance, sensation in my feet, all ever-so-slowly. A lot of food still tastes terrible too. Have been able to keep the weight I lost off though - so that's a good thing. Hope to stay at this number permanently. Was hoping to be strong enough to march in the Memorial Day parade but instead will be driving my Corvette and representing the Ludington VFW in the parade. Michelle will be riding with me since she is also a member.

On a side note - Kay has kept Michelle and myself busy. She's had a herniated disc in her neck for a few months that caused pain and numbness all down her left arm. Last week she had surgery to repair that (Dr. Hamati in Muskegon). So she is recuperating and doing better each day. She's been wearing a neck brace but will be able to get rid of that next week. Can't lift more than 5 pounds, can't raise hands over her head, and obviously can't turn her head. So we've been taking care of her and all her duties - but we do it with a smile! Will gladly do a few dishes to help her get back to normal and healthy.

I like retirement and miss work at the same time. Actually, I miss my tools and space. Been working on putting together the barn/shop at home with a few things I brought home from my business. Have been able to accomplish a lot of little projects around the home that have been neglected. Was able to go fishing this week finally too with the new son-in-law, Steve.

Thanks for the thoughts and prayers.
John