No updates, no news

Today has been very slow.  No new tests for Jonathon, and no results from any of the tests the last few days.  So... we're just in wait and see.  Again - thank you to everyone sending prayers. We are so grateful to have so many caring wonderful people in our lives.

Back to Chicago for complications

Well, they promised us that Jonathon would end up back in the hospital at some point after the transplant, and despite going over 6 months with no issues, here we are.  Some kind of infection is trying to take over Jonathon's lungs, so we're in Chicago to get things fixed since a round of antibiotics at home didn't help, and things just kept getting worse.  Today he got a bronchoscopy so that they could get a sample of whatever it is growing in his lungs, and then hopefully they'll be able to grow whatever it is and target it with the right drugs. They have him on oxygen since those levels were kind of low and an IV antibiotic.  There have been a number of CT scans and xrays and such too.  We've seen a pulmonologist and an infectious disease specialist.  So far, he's feels pretty much ok other than being super fatigued and coughing occasionally.

Thank you everyone for the prayers and positive thoughts.  We know they helped before, so we're sure they'll help now too.  We don't know how long Jon might be here, and he's hoping to get back home to South Bend real soon.  We'll keep everyone posted.

Age, Christmas & Cameras

Hard to believe nearly a year has gone by since I started having health problems. Nevertheless, we're ready to close the books on this year and enter 2010 with new beginnings. Though, I'm a little more humble (I think), a little more gray in the hair, we're progressing as though nothing happened. Speaking of which...I went to Wings Etc. yesterday with a few friends at lunch when the topic of age came up. Our waitress brings our drinks and asks,

"How old are you?"
"How old do you think I am?" I said.

I always get a kick out of watching people deliberate on their answer while they study my face.

She looks at me for a moment and says,

"39?"

I'm going to assume my eyebrows raised up Spock-style. I didn't say anything yet, but I'm pretty sure I was half-smiling. Al is snickering to himself and Jeff is bubbling laughter into his water. She then tries to correct herself and says,

"43?"

I'm like, then I said,

"Well, I'm actually 34, just turned."

"Omg, I feel terrible..."



So, I think my goat-tee's days might be numbered in effort to make myself look a little younger I guess. I don't know...we'll see. 43? Really??

My wife and I will be traveling to Green Bay for Christmas. We'll be there for 5-6 days. I'm looking forward to being off work and spending some time with family.

On Sunday, my family pitched in for my birthday and Christmas and bought me a new camera. It's a Nikon D5000. I am like a little kid with this thing. It's freakin' awesome. It takes astounding pictures and video. It has a lot of bells and whistles that I haven't gotten to know yet, but so far it's been really easy to use. Here's a few shots I took just playing around with the focus...

I am by no means a photographer. But I love taking pictures. Sometimes they turn out good, and sometimes they don't. I hope to be posting more pictures on my Deviant site and on my personal site soon.

'Till then, I wish everyone a safe, Merry Christmas and a fantastic new year.

Remission...Still!!

Late Sunday afternoon, I received a call from my doctor in Chicago, stating that my 6 month bone marrow biopsy came back free and clear of any cancer cells. This was great news. Before the biopsy they drew blood to run labs on my counts. I found out that my counts were holding steady and really couldn't be better.

Hemoglobin - 14.0
White Blood Count - 8.7
Platelets - 167

So I knew from those counts that everything should be fine. But it was a big relief to hear it from the doctor himself.

Thanksgiving went well and was fairly festive. I surprised my wife by secretly flying her sister in for the holiday. That was a tough one to keep under wraps. Here are some pictures from the weekend...Katie and Kelly are so photo-genic, it makes me sick!

Katie and I.

Katie and her sister Kelly


Katie and Kelly, the white coated duo


From left: My sister Jen, myself, Aunt Judy, Aunt Sharon, My Dad, and Uncle Frank

Happy Thanksgiving

I have a lot to be thankful for this year. I deeply appreciate all my friends and family that stepped up to get me through this year. It hasn't been easy on anyone. You know who you are.

I would also like to thank all the people involved with the bone marrow drive earlier this year. That was a wonderful thing to do. I can't seem to say enough about all the good things that came into our lives as a result of Leukemia. I've heard people say before that they're thankful for the disease because it changed their outlook on life and made them better people. It taught them to cherish small moments more, and make the best of even the worst situations.

Getting sick and being thrown to the floor like that will teach you 2 things:

1) How strong you are

2) Who cares about you the most and who is willing to step up to help

I would need pages and pages of text to name all the people who came together to make a difference. I'll never be thankful for getting Leukemia. It destroyed my life for nearly a year. But I'll always be thankful for what came as a result of it. I find serenity in that fact. I find peace there. Because there is what I'm thankful for.

Happy Thanksgiving to everyone.

~Jonathon

6 Month Bone Marrow

Hard to believe it's been 6 months since my bone marrow transplant. Yesterday, my wife and I ventured to Chicago once again to have a few tests done and a bone marrow biopsy. I'm still waiting to hear the results, but hopefully I'll have them this week.

I have returned to work full-time and that's going much better. I'm not nearly as tired as I used to be. And I'm able to do things when I get home around the house. It feels very good to be resuming some sort of normalcy again. My strength and stamina are still returning as well.

This past Sunday I stopped taking Prograf. This was the immune suppressing drug that I feel was responsible for the neuropathy in my feet and hands. Since I've stopped taking it, I have noticed a dramatic improvement in the overall feeling in my extremities. They gradually weeded me off of the drug over a two week period. But in the last month, my guitar playing has gotten much better and I can write almost normal again.

For those of you that may or may not have noticed, I had a new visitor who commented in one of my recent posts. His name is Daniel and he's from Romania. He was recently diagnosed with ALL and his blog can be found here.
This link is the translated link from Google, so hopefully it works. You are in our thoughts and we wish you well. Let me know if you have any concerns or questions. I'd be happy to help.

October Update

Went to Chicago twice this week. Monday for a thorough eye exam that literally was borderline painful. They dialated my eyes which wasn't all that bad. Then they put these strips in my eyes to measure the amount of tears my eyes are producing and that just sucked. I had to hold my eyes closed with these strips in there for a few minutes. Ugh. No fun. But after all that's been done to me this year, my eyes are still seeing 20/20. So I can't complain.

Tuesday I had a dermatologist appointment. In the last week or so, my rash has flared back up on my legs. So, they increased my Prednisone dosage a little.

I also started back to work full-time this week as well. It feels good, although my body is not quite used to it yet.

I know the posting here has been a little slow lately and it will probably continue that way. There's just not much new to report. However, I am back posting regularly on my personal site - www.jonathonrose.com. Look for new movie reviews as well.