Monday, July 27, 2009
Memorial Service
For those of you who are unable to attend Jon's Memorial Service, it will be broadcast live at www.fbcwaldoboro.org (click on FBC Live).
Saturday, July 25, 2009
Memorial Service for Jon
Sorry everyone, I neglected a vital piece of information in my last post. Jon's Memorial Service will be held on THURSDAY (July 30th) at 11 am at First Baptist Church in Waldoboro, ME.
Memorial Service for Jon
Jon's Memorial Service will be held at 11:00 am at First Baptist Church in Waldoboro, ME on route 1 (next to Moody's Diner). In lieu of flowers donations may be made to the building fund at First Baptist Church of Waldoboro, PO Box 324, Waldoboro, ME 04572.
He is Home
Jon's unexpected journey is now complete. He went home to be with the Lord last night at 9:10 pm, surrounded by his family with prayer and singing. I will post again with details of the memorial service. Your continued prayers are appreciated.
Wednesday, July 22, 2009
I am now out of the hospital, but am returning tomorrow (Thu) for another bronchosopy at 1pm, and will be admitted overnight Thu. for observation. If nothing out of the ordinary happens with the procedure, I'll be discharged Friday sometime. I will remain in Claremont until we get the results of the bronch and a plan to move forward is developed. After all of the tests and scans done while I was admitted the last 10 days, we still do not have a definitive diagnosis, though progress has been made toward that end, and many things have been ruled out. It seems as if there are 2 different things happening:
1) a doughnut-looking mass in the upper right part of my lung that's pretty small. These type of masses are usually a fungal infection and are usually treated with a particular type of drugs. My mass, however, has been tested for many different types of infection, and has come back negative in all tests. It has also been tested to see if it's cancerous, and they tell us it's not.
2) a condition affecting all of my lungs at some level, which is usually treated with a different type of medication than the fungal infection, and would probably encourage the growth of the fungal infection.
I do not expect to have all of the initial results until at least Tue. or Wed. of next week, and probably won't meet with the doctor until later in the week.
I will most likely have some medication changes that will need to be closely monitored for at least another week or two, so we are once again "setting up shop" for at least another 2-3 weeks here in Claremont.
Please continue to pray with us for the following things:
1) that the bronch would give us some definitive results and a clear diagnosis.
2) that the doctors would have wisdom when they meet to discuss the treatment plan after the diagnosis is made.
3) that I would not have to be admitted again - at least until we know that action plan is. I found this last admission to be one of the toughest ones I've had mentally, as I was literally just waiting for the results to come back and the doctors to come up with a plan. I ended up being discharged (after 11 days!) with no treatment ever being done, and no definitive diagnosis. In that sense both of my transplants, though longer in each case, were easier because there was a clear goal and direction to focus on and shoot for.
4) That I would be able to improve in my ability to breathe and care for myself. Right now, I can only walk about 15 feet or so before being out of breath, and I can't stand for longer than a couple of minutes. This makes it hard for me to be alone anywhere for any length of time.
5) That my cough and chest congestion would disappear, or at least decrease.
6) For the relationships I developed and conversations I had with the following people at the hospital over the last 11 days: Tina, Lisa, Larry, John, Ken.
Thanks for continuing to share the burden of prayer with us. Realize that when you think of us, then lift even a brief "arrow" prayer (i.e. Nehemiah), the Holy Spirit takes your thoughts and utterances, not just the words you form, and brings them to God the Father on your half and to our benefit. Wow! Even when you don't know what's needed at that moment, a simple "God, whatever Jon needs right now, please take care of it" goes to work!
Jon, Lisa, Jillian, & JJ
1) a doughnut-looking mass in the upper right part of my lung that's pretty small. These type of masses are usually a fungal infection and are usually treated with a particular type of drugs. My mass, however, has been tested for many different types of infection, and has come back negative in all tests. It has also been tested to see if it's cancerous, and they tell us it's not.
2) a condition affecting all of my lungs at some level, which is usually treated with a different type of medication than the fungal infection, and would probably encourage the growth of the fungal infection.
I do not expect to have all of the initial results until at least Tue. or Wed. of next week, and probably won't meet with the doctor until later in the week.
I will most likely have some medication changes that will need to be closely monitored for at least another week or two, so we are once again "setting up shop" for at least another 2-3 weeks here in Claremont.
Please continue to pray with us for the following things:
1) that the bronch would give us some definitive results and a clear diagnosis.
2) that the doctors would have wisdom when they meet to discuss the treatment plan after the diagnosis is made.
3) that I would not have to be admitted again - at least until we know that action plan is. I found this last admission to be one of the toughest ones I've had mentally, as I was literally just waiting for the results to come back and the doctors to come up with a plan. I ended up being discharged (after 11 days!) with no treatment ever being done, and no definitive diagnosis. In that sense both of my transplants, though longer in each case, were easier because there was a clear goal and direction to focus on and shoot for.
4) That I would be able to improve in my ability to breathe and care for myself. Right now, I can only walk about 15 feet or so before being out of breath, and I can't stand for longer than a couple of minutes. This makes it hard for me to be alone anywhere for any length of time.
5) That my cough and chest congestion would disappear, or at least decrease.
6) For the relationships I developed and conversations I had with the following people at the hospital over the last 11 days: Tina, Lisa, Larry, John, Ken.
Thanks for continuing to share the burden of prayer with us. Realize that when you think of us, then lift even a brief "arrow" prayer (i.e. Nehemiah), the Holy Spirit takes your thoughts and utterances, not just the words you form, and brings them to God the Father on your half and to our benefit. Wow! Even when you don't know what's needed at that moment, a simple "God, whatever Jon needs right now, please take care of it" goes to work!
Jon, Lisa, Jillian, & JJ
Tuesday, July 21, 2009
free at last!
I was discharged about 5pm today! I get to spend tonight and tomorrow night at my in-laws (while Lisa and the kids are making a quick trip home to Maine for Jilli's dentist visit tomorrow!) I'll meet them back at the hospital here on Thu., where grammie and grampie will take the kids back to their house, and I'll have another bronchoscopy (long story there!), and will be kept overnight for observation, planning to be back here on Friday at some point. Hope to get more info up tomorroww, but that's the current plan. It's a long way from where the plan was when I got out of bed this morning, and I have no idea what may change between now and Thu., but I'll do my best to update here.
Saturday, July 18, 2009
update from week of July 10-17
from Lisa's Facebook update on Fri. July 17:
I know many of you are anxious to hear what is going on with Jon, but up until today we really had no information. Jon has been taken off respiratory precautions, so the kids were finally able to visit today. The tuberculosis was negative - praise the Lord! Jon seems to be feeling better today, which has been encouraging. He loves hearing from all of you by email or facebook! Keep it coming!
We learned from the doctors today that the findings of the needle biopsy were inconclusive - nothing came up positive. The bronchoscopy was negative for everything they tested for including RSV, but there is definitely something going on. Jon has two issues right now: 1. His severely decrease lung function, cough, shortness of breath and need for oxygen - this is all called bronchiolitis obliterans syndrome, meaning something is causing the airways in his lungs to die off, and 2. The cavitary lesion that was discovered on his CT scan. The docs feel these are two separate issues, but both need to be treated.
Since the biopsy results were inconclusive, there was talk of doing a VATS procedure (3 incisions on his right side to go in and take a chunk of the lesion), however, to do this procedure they have to deflate his right lung, put him on a respirator, and the surgeon feels that is too risky at this point. So no surgery.
The doctors, knowing this was a possibility, have come up with a plan B. They feel very strongly that the bronchiolitis obliterans syndrome (BOS) is caused by graft vs. host disease (GVHD) - Jon had GVHD earlier this year but it affected his skin. The treatment for this is high dose steroids to further suppress his immune system, and the GVHD would calm down, and his lungs would improve. There is another possible reason for the BOS in his lungs, and that is infection. However treatment for GVHD and infection are very different. If they treat for GVHD, and Jon gets worse, they will stop the steroids and treat him for infection. He will be monitored very closely during his treatment.
Now to complicate matters, the cavitary lesion in his right lung is likely some sort of infection. If Jon is being treated for GVHD with high dose steroids, his immune system will be suppressed and an infection could grow rapidly. So, Jon will be treated with other meds to keep the infection under control.
I know this is a lot of information, and we are still trying to process it all. Our prayer at this point is that the treatment for GVHD will be effective and Jon would improve beyond what the doctors expect, and that the cavitary lesion would disappear with meds and not be a further issue. I don't know how long Jon will be in the hospital, but they have hopes of getting him out as soon as they can. I don't know if that is a matter of days or weeks or what, but we're praying it's soon. We will stay in Claremont for a while after his is discharged until we get the OK from the docs to head back to Maine.
We are both weary of it all, but we are so thankful to know a God who is in control of all of this. Thank you all for your kind words and prayers - both are very much appreciated. I will try to keep you all in the loop on this new leg of the journey.
I know many of you are anxious to hear what is going on with Jon, but up until today we really had no information. Jon has been taken off respiratory precautions, so the kids were finally able to visit today. The tuberculosis was negative - praise the Lord! Jon seems to be feeling better today, which has been encouraging. He loves hearing from all of you by email or facebook! Keep it coming!
We learned from the doctors today that the findings of the needle biopsy were inconclusive - nothing came up positive. The bronchoscopy was negative for everything they tested for including RSV, but there is definitely something going on. Jon has two issues right now: 1. His severely decrease lung function, cough, shortness of breath and need for oxygen - this is all called bronchiolitis obliterans syndrome, meaning something is causing the airways in his lungs to die off, and 2. The cavitary lesion that was discovered on his CT scan. The docs feel these are two separate issues, but both need to be treated.
Since the biopsy results were inconclusive, there was talk of doing a VATS procedure (3 incisions on his right side to go in and take a chunk of the lesion), however, to do this procedure they have to deflate his right lung, put him on a respirator, and the surgeon feels that is too risky at this point. So no surgery.
The doctors, knowing this was a possibility, have come up with a plan B. They feel very strongly that the bronchiolitis obliterans syndrome (BOS) is caused by graft vs. host disease (GVHD) - Jon had GVHD earlier this year but it affected his skin. The treatment for this is high dose steroids to further suppress his immune system, and the GVHD would calm down, and his lungs would improve. There is another possible reason for the BOS in his lungs, and that is infection. However treatment for GVHD and infection are very different. If they treat for GVHD, and Jon gets worse, they will stop the steroids and treat him for infection. He will be monitored very closely during his treatment.
Now to complicate matters, the cavitary lesion in his right lung is likely some sort of infection. If Jon is being treated for GVHD with high dose steroids, his immune system will be suppressed and an infection could grow rapidly. So, Jon will be treated with other meds to keep the infection under control.
I know this is a lot of information, and we are still trying to process it all. Our prayer at this point is that the treatment for GVHD will be effective and Jon would improve beyond what the doctors expect, and that the cavitary lesion would disappear with meds and not be a further issue. I don't know how long Jon will be in the hospital, but they have hopes of getting him out as soon as they can. I don't know if that is a matter of days or weeks or what, but we're praying it's soon. We will stay in Claremont for a while after his is discharged until we get the OK from the docs to head back to Maine.
We are both weary of it all, but we are so thankful to know a God who is in control of all of this. Thank you all for your kind words and prayers - both are very much appreciated. I will try to keep you all in the loop on this new leg of the journey.
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