appts Fri. June 19

I had appointments this past Friday, and though not much has changed in my condition, status, or symptoms, there was enough to encourage the docs to say that they think I may have turned the corner with this virus, and might now be on the upswing of the curve, headed ever so slowly still, towards healing. i am coughing more, and breathing is a bit more labored, though it seems that is tied to the humidity outside. i will have my next visit witht he docs on Fri. July 10th, and they will run a number of tests and scans that day to make sure nothing is getting worse and the virus is getting better.

So, for now, pray with us that:
1) the virus really is healing and getting out of my system, and that healing would happen a bit more rapidly than it has been.
2) the tests & scans would show no growth or progression with either cancer or the virus,
3) that i wouldn't have to have any further inpatient treatment for the virus
4) for safe travels to NH and back for the visit on the 10th, and that we'd be able to make these trips less frequent real soon.

thanks, Jon & Lisa

an update and links to some good reading

It has once again been too long since I update you all here on the blog, so here goes on trying to catch you up since the last post. After our trip to NJ over Memorial Day weekend, which went pretty well, given my condition right now, we returned home by way of NH and "stopped in" at Dartmouth for a check-up. We were there on the Thu. after Memorial Day, which made it about 2 months since the first sighting of the RSV infection in my system, and while it had not visibly progressed on any of the tests or scans, I certainly wasn't improving (in fact, with having to go on the oxygen, a good argument could be made that my condition had gotten worse, however slight it might have been).
So, we agreed with the recommendation of the transplant doctor, in consult with the infectious disease specialist, for me to admitted there at Dartmouth for 3 days to receive course of Ribovirin treatments, a nebulized inhalation treatment that required going into a "bubble" 3 times a day and putting on a mask to inhale a fine mist/powder that is suppposed to get down into my lungs and help to knock out the RSV. I was discharged on Sunday May 31, so it has now been a little over a week since the treatments ended, and I think there has been some slight improvement. I was coughing a lot when I got out, including several coughing fits of varying lengths each day, which were at times uncontrollable and up to 2 hours long. In the last couple of days, they have been less severe and no longer than 15-20 minutes. I was having a lot of weasing, squeaking, and strange breathing sounds when I was discharged, but am having less of that now. I am still having considerable breathing difficulty, still need the oxygen pretty consistently, except when I am in bed asleep, and I still have very little stamina or tolerance for exertion at all (a walk out to the deck and a lap or two around the 15 X 15 or so area wipes me out and I have to sit down to catch my breath).
I was able, however, to be discharged in time to spend my birthday last Wed. June 3rd here at home with Lisa and the kids, and we had a great day being at home together, enjoyed a birthday dinner from the grill and then opened presents together. It was great to be home with them for my birthday this year, as I've spent the last 2 birthdays in the hospital, as well as several other holidays (valentine's day, Lisa's birthday, Father's Day, etc.). I was actually able to avoid (dodge may be more like it!) all doctors appts. and hospital visits last week, for which I am overjoyed!
I went to Brunswick yesterday to have routine blood work drawn, and will find out when those results come back whether I need to have an IV immune treatment this week or not, and what medication changes are coming as they continue to try to taper me off both of the immune suppressants I am on. So far, I seem to be tolerating the reductions they've made pretty well, which is another thing to be thankful for. We will be returning to Dartmouth for a checkup next Friday June 19, and hope it is just a checkup this time, and not another surprise admission like last time!
Right now, you can pray with us for the following:
1) continued good health for the rest of the family - Lisa, Jillian, and JJ have all been pretty healthy as of late and that has made it easier to focus on my issues.
2) that my overall health and condition would improve to the point that I could get off the oxygen and get rid of the coughing and respiratory symptoms.
3) that we would have safe travels to NH next weekend and that all would go smoothly at that visit, where we'll be seeing both the transplant doctor and the infectious disease doctor.
4) for our transplant doctor - wisdom for how to treat me and how much to require me to be there vs. have things done here at home in Maine. Also, for his family as his mother came down terminally ill this past week and is not expected to live through the coming weekend. Pray for his mom's salvation and that God would show Himself in the midst of everything. Pray also for my witness to him next time I see him.

Thanks again for your "bearing the burden" with us the load of these prayer concerns by lifting us up before the throne of grace.

James 1:3 (ESV) "you know that the testing of your faith produces steadfastness (Greek hupomene - "to bear up under"). And let steadfastness have its full effect, that you may be perfect and complete, lacking nothing."
It's my prayer that when the opportunity to perfect & complete your faith comes your way (trials and difficulties WILL come your way, by the way, if you are truly a disciple of Jesus, and that;s exactly what James is saying trials are - an opportunity), you will have the ability, faith, & wisdom enough to make the choice to "hupomene" - bear up under - rather than cut & run or seek to escape at the first opportunity. Look for what God wants to do in and through you rather than what's happening to you - it will change your perspective and your life!

Now for links to some good reading:
Did you know that you are a theologian, whether you think of yourself that way or not? Read this

Do you want to know what really matters in life? Do you want to increase your obedience to Jesus? Read this quote

If you're a leader of any kind, whether a Sunday School teacher, a pastor, deacon, elder, or influencer of any sort, read this passage, originally from Richard Baxter, the 16th century Puritan pastor and writer, on keeping your heart.

Happy reading, and may your heart be encouraged and your faith grow as a result of what you read here!

update from this week

All of the results from the tests and such this past week at Dartmouth came back, and the chest CT done showed no changes, the repeat bronchoscopy showed nothing different, and the lab numbers were all improved, except for the minerals that we knew about and for which I received some simple IV hydration while down at Dartmouth on Thursday.
However, this week, I wasn't quite feeling "up to snuff" when I went for my weekly IV immune treatment in Brunswick on Thu., so we met with the oncologist there and discussed things, in particular my breathing, which seemed to be more labored and difficult this week than last week. While I was getting my IV treatment, I tried being on oxygen, and it seemed to help some, so after looking at the O2 saturation numbers (how much oxygen is in your blood) and seeing that it was indeed making a difference, especially after any amount of exertion, it was decided to try the oxygen here at home for now and see how things went. The oxygen company arrived Thu. night and set up the oxygen machine here at home, and also left a couple of portable tanks, just so that I could have that experience of feeling like the evil doctor in charge of the lab from "the Pretender", who I also happen to resemble a bit now with my bald head! It wasn't difficult to figure out, and I have been on the oxygen here for 2 days now, and it does seem to make a difference in my ability to breathe easier and deeper. The chest xray and a follow up chest CT at Brunswick on Friday both showed no real further changes, and I am scheduled for another lung function test here in Brunswick on Monday morning, which should give some further information and results from which to determine what and if any the next step should be. We plan to leave for New Jersey on Wednesday, traveling down to be with family for the Memorial Day weekend, returning by way of New Hampshire the following Tuesday with appointments at Dartmouth on Wednesday. If all goes according to plan (and it never seems to!), we will return to Maine on Thursday.

Please pray for:
1) no progression of the virus and no changes in the test results on Monday.
2) safety in traveling and stable health during the trip.
3) increased strength and ease of breathing to return so that I could get off the oxygen as soon as possible.
4) stable health for the kids and Lisa

Thanks for your continued interest and prayers,
Jon & Lisa

quick update

We are finally back home after a long week at Dartmouth. A Tue. night trip over, appts. all day Wed. & Thu. (though only expecting a partial day Wed. & return home Thu.), then a return trip home Fri. and spent all day Sat. achy, in bed, & laying around from the long week. I am starting to join the "land of the living" again today. More later, but glad to be home and on the mend again. No trips anywhere until Memorial day weekend, and we don't have to go back to Dartmouth until the week after that.

update - appointments from April 16-17

I had my bronchoscopy on Thu. 4/16 and appts. with both my transplant doc and the infectious disease specialist, who has been following me since transplant, specifically my lungs and respiratory issues. We were surprised, but relieved to find out Friday that I have RSV, a respiratory virus, and that it probably explains a number of my current issues, to include shortness of breath, cough, congestion, and constant runny nose, all of which I've had for about 2 months now. This particular virus is actually a fairly common one, especially for babies, but also for kids & adults, though they often pass it off as a cold, as the typical symptoms are similar, and for most people, it goes away in a week or so. However, the I.D. specialist said he was not surprised I have had it this long, as the virus itself is somewhat common in all post-transplant patients, and I have the additional complication of having more immune system suppression than most due to the treatment I am on for the cGVHD. He also said he would not be surprised if it took another month for it to die off or burn out and have all the symptoms disappear. It is really nice to have some hope that so many of these symptoms are explainable, will go away, and that it won't require any other treatment (at least for now)...not even one more pill! If all I've got to do is wait another few weeks for this stuff to disappear, I can do that.

It is possible we will learn more from the bronchoscopy, and I will update again if we do, but the doc who did it said he got a good look and didn't see anything of note, but he did take a biopsy sample that could still show something after testing. For now, I am excited to have some answer to what these issues are and what could be done to get rid of them. My other major complaint is my eyes. The opthamologist continues to say they will heal with time, but were so dry and scratched it may still take another week or two yet. I have started on some new eye drops (3 different drops now - twice a day!) to help with increased tear production- this can be a chronic issue for cGVHD patients.
I also continue to struggle with peripheral neuropathy in my lower legs and feet (nerve pain & numbness). This causes them to be sore quickly and often, makes it hard to balance and walk any distance, and has caused problems with shooting nerve pain, although that has improved in the last week or so. I continue to have weekly IV immune building treatments here in Maine, and do not have to return to Dartmouth for a month - my next appointment is Fri. 5/15.

The teleconference/support group I mentioned last week was immensely helpful, educational, and encouraging, and I am looking forward to the other 3 weekly sessions on Thu. nights. I am also excited about a writing study I have volunteered to be a part of for post-transplant patients, which actually begins the 1st week of May.

You can pray with us that:
1) the virus would burn itself out and symptoms would disappear quickly.
2) we would not get any bad news from the bronchoscopy.
3) my eyes would continue to heal and moisten up, and that the dry eyes would not be or become a chronic problem.
4) my legs, balance, & walking would improve.
5) the phone group would continue to be such a positive experience.
6) the writing study would be enjoyable, helpful, and effective to the researchers.
7) I would continue to practice & develop "patient endurance" as I attempt to "hold up this rock" that God has called me to.

We continue to covet your love, prayers, & encouragement as we long for some relief during such a long, difficult journey.

update - appointments from April 2-3

I was back down at Dartmouth for more checkups and some tests this past Thu. & Fri. April 2-3, and thought I'd give an update. It was a busy week, and I ended up being at a hospital or doctor every day last week - Monday was blood work here in Maine, Tue. night was another ER visit for my eye, followed Wed. by my weekly IV treatment and an eye dr. appt. here in Brunswick, then left right from there to get down to NH, where Thu. & Fri. were at Dartmouth. No wonder I was so beat this weekend!

Thu. was the eye doc at Dartmouth, and he said I may have developed a reaction tot he antibiotic eye drops while I was finishing the course with them, but in any case, my eye had gotten all dry and gritty, and both eyes were scratched and damaged - The right one is just slightly scratched and the vision out of it is not affected too much, but the left one was severely scratched and I could barely see out of it. I have stopped the eye medication, and was told to use lubricating drops and gel as often as neccesary for comfort. He said it could take a couple of weeks for the vision to return to normal, and until then I can't drive, and have had difficulty watching TV, being on the computer, or even reading, though it has improved somewhat yesterday and today. It is possible that this new dryness in the eye is a symptom of the chronic GVHD, but only time will tell. If it goes away, it as likely a reaction to the medication, but if not, it is likely another symptom of the cGVHD.

Fri. began with both a chest CT and a CT of my sinuses, to attempt to find the cause of my recent increase in breathing difficulty, and my persistent cough and consant runny nose. Both tests were clear, and a lung function test later on Fri. showed similar lung capacity to previous tests, but a 15-20% decrease in how much I can put out. I also had a swallowing study done on Fri., where you stand against an X-ray table, drink a bunch of barium of different thicknesses while they take pictures and watch the liquid flow down inside you. It was pretty cool to watch while it was being done, but having to do it on an empty stomach was not fun, as the barium tastes awful, I had to drink over a quart of it total, and it really rips up your stomach later on! They ended the swallowing study by watching me swallow a pill, which got stuck and was good they were able to see. The end result was that there really is no constriction in the throat that they can see, and the muscle movement in the esophagus is good. So, I don't know a whole lot more than I did before, though they have ruled some major things out. My feet have gotten really sore, sensitive, and have begun to hurt walking even short distances, most likely from increased neuropathy caused by the high doses of immune suppresants I am now taking for the cGVHD. They have started me on another pill that usually helps with this type of nerve pain, and said it will take a few weeks to notice a real difference, but that it most often helps things at least somewhat.

The next step will be to return to Dartmouth the end of next week, either Thu. April 16 or Fri. April 17 for a bronchoscopy, where they will put a scope down my throat to actually look into both my esophagus and my lungs to see if there are any problems there that might not be evident on the X-ray from the swallowing study. IN the meantime, it seems my mouth sores are waxing and waning, going away and then coming back in different places. Either the pain from them has subsided, or I have gotten used to it, as they don't bother me as much as before, as I am able to eat more than I was used to.

At my appointment with my transplant doc, we had a good discussion about the seriousness of GVHD and the importance of being vigilant in watching & managing the symptoms. He told me that in cases like mine, there is a 5 year mortality rate of 15-20% just from GVHD, even if cancer is no longer a part of the picture. This was new information to me, and was bit unsettling, but it's just another thing I will have to adjust to and trust God to lead the way through it. In order to learn more and be able to manage life better, I hope to be a part of a 4 week teleconference I have found for newly diagnosed GVHD patients, which starts next Thu. night April 16 and runs for 4 weeks.

For now, you best pray for the following:
1) eyes - relief from pain & itching, restoration of my vision.
2) breathing - return to normal breathing or some meaningful result from next week's scope procedure.
3) feet & legs - relief from nerve pain and return of my normal ability to walk.
4) general endurance & patience with this new diagnosis and situation I find myself in. It really is a new chapter in my "unexpected journey".
5) the teleconference I mentioned above will be beneficial and will help me recognize and mange things better.

We continue to covet your prayers, love, & support through this journey, and appreciate the notes, emails, and practical expressions of help that continue to come our way.

Resource - James MacDonald Sermon Series: Turning your Trials into Gold

I just watched the DVD of his message on James 1 that is part of his series yesterday, and was really challenged by it. James does a great job of tying the whole first part of James 1 together, showing how to achieve joy in the midst of trial by "remaining under" the trial that God has placed in your life and submitting to it, asking God for wisdom AND wanting that more than your own comfort or even the end of the trial. If you need some encouragement in the midst of a trial, you've got to see or hear this series. * If you're not familiar with James MacDonald, he's the senior pastor of Harvest Bible Fellowship in Elgin, IL, the radio voice of Walk in the Word Ministries, and one of the main authors for the daily Our Journey devotional.
Click the title above to access the DVD message on his website.