a long overdue update

Has it really been 6 weeks since my last update? Wow! God is good and continues to give healing and steadily increasing endurance. I had a hiccup with a bad sinus infection a few weeks ago, which went through the family, but we have all come out the other side of that, and all are pretty healthy right now. My energy has been increasing, and was even able to be outside and put up Christmas lights on the house this weekend, for which I am so grateful - our house was the last one on the road to be "in the dark"! I put up our (fake) tree tonight, and we'll finish decorating it tomorrow - no real tre this year as I am not yet 1 full year out from my transplant, and live trees carry bring a potential source of fungal infection into the living quarters, so we will do the plastic thing this year. I am working pretty much full time now, except for the time I am taking off for medical appointments, which are becoming less frequent the closer we get to one year out (Feb. 29th - approahing quickly!) I realized this morning just before our Sunday church service began that today is the 3rd anniversary of my diagnosis - God is so good, and He has brought me so far I just can't say enough about this journey I've been on.
We enjoyed a good time in NJ with my family for Thanksgiving. It was different without Mom - we went out to eat, among other things - but it was good to be together. Our van broke down on the way south (A/C compressor seized up just 1 exit before the Tappan Zee Bridge!), so we rented a vehicle to complete the trip and picked up our van on the way back north. We stopped in NH on the way home for appts. at Dartmouth this past Tue., where I got all clear reports to each of the tests and scans I had done. I will visit again on Dec. 31, as we'll be down in NH tha week to celebrate Christmas with Lisa's folks earlier that week.
What a great time of year to be getting better and "becoming more alive" - this season when we remember the gift of God's Son becoming one of us and bringing peace to the world. Peace to "those who were far away, and to those who were near" (Eph. 2:17), and this peace is ours through our acceptance of the gift of Hos Son. Peace with God, peace with others, and peace with ourselves - all ours because God chose to condescend to us, become like us, live a perfect life, and die in our place. What a wonderful God - what a wonderful Gospel - what a wonderful opportunity to share this message with so many this time of year.
Pray for me as I train the next 2 weeks for a new role as a volunteer with the Amerian Cancer Society as a "patient navigator" - a friend for those who are just beginning their own unexpected journey with cancer. Pray that I will be able to "be prepared to give an answer to everyone who asks you to give the Reason for the hope that I have", and that my words and actions would show that Hope. It's my hope and prayer that I can use this volunteer opportunity to share the Gospel with many who are confused and hopeless, and realize how numbered their days on this earth really are (they are for every one of us - cancer or not, but sometimes we're forced to admit it!). Keep in touch, and use the opportunities God puts in your path to share the purpose of His gift to you this Christmas season!

no news is good news!

Since it's now been a month since I updated, just thought I'd let you all know that everything is going well, and I have enjoyed good health for solid month now. I am working close to full-time again, and it's going pretty well. I am enjoying once again living in my "new normal", but am still working to find the line of balance between doing what I want to when I want to and being sure I don't overdo it. Continue to pray in this area...If someone had told me I'd be in this place 1 year ago, I'd have jumped up and down for joy, and I am grateful for where I am, but there are different struggles here that I hadn't imagined. On a positive note, I was able to get out and o golfing this past Thursday with some men from the church, for the first time in about 18 months! It was more like football weather than golf weather - about 30 when we teed off, bright and clear with a nice breeze. I lost count of how many layers I was wearing! I have no idea what my score was - I was just happy to be able to make it through 18 holes swinging the club and being outside. Praise God for blessings like that that remind me just how far He's brought me.

all tests clear

All of my 6 month tests and scans came back and are clean, clear, & free from any and all signs of cancer! I also received back results from my skin biopsy done this past Monday, and the symptoms I've been experiencing are NOT graft vs. host disease. It is now assumed that they must be some sort of medication allergy reaction or interaction. Those symptoms are beginning to subside, as are some of the symptoms of this awful cold I've had for the better part of a week already. I am hoping and praying that a rainy weekend of more rest and fluids will help bring this chapter to a close. Thanks for checking in, and continuing to pray. Dad, Kevin, Brian, & Jenn are on their way to Penn State for the Illinois game tomorrow night, hoping for the rain to hold off...Go Lions!

Monday happenings

A long day after a long weekend. I began having severe itching and a spreading rash at the end of next week. Over the weekend, the rash began drying and peeling, leading the docs to wonder whether the cause was a drug allergy/interaction or the start of graft-vs.-host-disease. I had a skin biopsy today that should rule in or out GVHD - results will hopefully be available Friday. I also visited the local oncologist, who wasn't as concerned as I was about it all, and said I did not need to be admitted, for which I thankful, although a bit surprised. I also had a chest xray today, since my cough has gotten worse since last week.
I hope & pray that the results of all of last week's tests, as well as the biopsy today, will be available by Friday morning, when I see the dr. at Dartmouth. Pray that I will also have enough energy and relief from pain & itching to make the flight over & back on Friday. As such, I will laying low at home this week, trying to make sure I'm rested enough to make the trip on Friday.

Friday night at home

It's been a while since I blogged, so I thought I'd give an update while I'm thinking about it. I rescheduled all of my 6 month checkups and scans from the day of Mom's funeral to this past Mon. 9/15 and Tue. 9/16. I won't get any results until next Fri. 9/26, when I will travel down for an appointment with Dr. Hill to get the results and map out the frequency of my future visits. All the tests went off OK, although I do have a rash that seems to have developed either from drug interactions or as a first sign of graft-vs-host disease. Obviously, I hope its the former, rather than the latter. I will be having a skin biopsy done in Brunswick on Mon. afternoon. Please continue to keep these matters in prayer, as well as Dad, Brian & Jenn, Kevin, and Lisa & I as we continue to grieve & process Mom's passing away.

Barbara Basner, March 8, 1948 - August 27, 2008

It is with a sad and heavy heart that I write to let you know that my mother, Barbara Basner, passed away yesterday morning, August 27, at 4am.

While our entire family deeply grieves her loss, we also greatly rejoice in her “graduation” from this earthly world of sickness to the eternal peaceful rest, health, and glory in the loving arms of her Savior, Jesus Christ.

We greatly appreciate your prayers, cards, and expressions of love and concern.

Service arrangements are as follows:

Fri. August 29 - at Fellowship Baptist Church

1520 Hainesport Rd., Mt. Laurel, NJ 08054 (856) 235-1697

Please click here for directions from the FBC website.

6-8 PM – Visitation

8 PM – Memorial Service

Sat. August 30 - at Marcus Hook Baptist Church

1345 Market St, Linwood, PA 19061 (610) 485-1298

Please click here for the location of Marcus Hook Baptist Church

9-10 am – Visitation

10 am – Memorial Service

Internment to follow at Lawn Croft Cemetery, Linwood, PA

Luncheon afterward back at MHBC

In lieu of flowers, our family is asking for donations to be made to the Leukemia & Lymphoma Society.

Please click here to go to the LLS’s donation page online.

update on Mom - Fri. 8/22

Just a quick update...things have improved slowly and steadily this week, so I am flying back home to Maine tomorrow. I am about to leave for the hospital this afternoon (my brother, Brian, has been there this morning). Mom has improved her breathing to the point where they think they may be able to pull out the breathing tube on Monday and she could breathe on her own, but there are a few more hurdles to that happening, mainly meds that need to be reduced or stopped, and she needs to be a little more responsive. Please pray that Mom would continue to improve to the point where the ventilator can be removed on Monday.
Thanks so much to all who are praying so hard - keep it up...Mom is doing better, but she's not out of the woods yet!

update on Mom - Mon. 8/18

It has been a busy and eventful weekend, and Mom has indeed proved the doctors wrong again, and has pulled through, and is doing better than any of them thought as of Wed. night. Mom is now more alert and responsive, her counts began to creep upward on Friday, and have pretty much stayed up since then, even improving slightly. We met separately with both teams of doctors (ICU & Oncology) today to discuss how the weekend went and where Mom seems to be right now, & they both said that healing is now possible and can be expected over the next several days and weeks, if things continue in this direction. Mom is still critical, and any complications or additional infections could change things any day. Blood counts usually return in patients like Mom around Day 30, and Mom's did not return until Day 35, but they now seem to be solidly there, though still very minimal. Mom still has a large fungal pneumonia and multiple other infections, is still on the ventilator, and still has a LONG and uphill climb to recovery. However, just as she did 11 years ago during her stem cell transplant for breast cancer, Mom is surprising the doctors by defying their predictions, at least for now, and we praise God for it!
Lisa and the kids plan to return home Wed. or Thu. of this week, and I will stay through the end of the week, and return home this weekend. We continue to covet any and all prayers we can get for Mom, but things are looking cautiously optimistic right now, especially compared to this past Wed. & Thu. Pray that this seeming turnaround continues. For now, we will wait for Mom's body to heal, and continue praying for God to do the healing!

Day 30 update on Mom

Mom is now at Day 30 in her chemo cycle, and her blood counts have still not come up in any measure. So, the docs have stopped her daily Neupogen injections (white blood cell booster) for the weekend, and will perform another bone marrow biopsy on Monday, hopefully getting a good sample of both marrow as well as bone this time. They hope to have some results from the biopsy available by end of day Tuesday, which should help provide info that would help guide treatment decisions moving forward. The hope and prayer is that the biopsy sample would be a good, solid sample, and that it would be free from any signs of leukemia, as this would give the most hope for recovery.
As of last night, Mom was improving symptomatically - her fluid output was greater than her input (indicating that she is now beginning to drain her lungs and swollen tissue), and her blood pressure had improved (because they were able to take her off the sedation medication that was causing the decrease in B.P.) which also allowed them to decrease her blood pressure medication. They put a "bite guard" on the breathing tube so that Mom can't bite off her oxygen, and were able to dial down the amount of work the ventilator is doing so that Mom was intiating her own breaths, and Mom was able to sustain that for about 24 hours, which is a lot better than earlier in the week. They have ruled out one of the most common fungal infections of the lungs (aspergillius), and have reduced the antibiotics Mom is getting. All of these improvements in Mom's symptoms are encouraging, and, we are hoping, are good indicators of at least some clinical improvement, as well.
Please pray that:
1) the biopsy would be completed successfully with no complications, and that they would get a good sample
2) the biopsy results would show no signs of leukemia, and even some signs of blood cell growth, which may not have made it out int ot he peripheral blood stream yet
3) Mom would continue to improve both symptomatically and clinically
4) Mom's blood counts would begin to measurably rise
5) strength for Mom to continue fighting, strength & endurance for my Dad to deal with all of the decisions, long hours at the hospital, along with the normal activities of life, and grace and strength for our family in dealing with all the praying, hoping, waiting, and the unknown.
Thanks to all who continue to check in for updates. Your thoughts, concern, and most of all, your prayers are felt and are having an effect in ways you'll never know.

update on Mom - Tue. 8/5

Sorry it has been so long...Wed. was rather busy and eventful, and then I flew home to Maine on Thu., went to my oncologist there in Maine on Fri. (all is good with me), as they let me do that visit there instead of at Dartmouth. My next doctor visit will be at Dartmouth on Mon. Aug. 11, where I'll see both the transplant doc and the infectious disease guy, who's watching my lungs. No problems there - slow but steady progress in my breathing capacity.
As far as Mom goes, her biopsy results were inconclusive, because they did not get a good enough sample. There just wasn't any liquid marrow where and when they drilled. They decided to go ahead and start her on daily injections of Neupogen, which stimulates white blood cell production. In the meantime, they did an echocardiogram (results OK) and a full body CT scan, which showed that the pneumonia is progressing. Without any white blood cells to speak of, the antibiotics they are giving her don't have much to work with (they only help with an infection; they can't do the "heavy lifting" of the healing work themselves), and there's nothing further to give her to help fight the infection. As far as the heart goes, there does appear to be some damage, and they have maxed out on the heart drugs she's getting right now. That means that when and if she goes into an arrythmeia (irregular heartbeat), they have no way to correct that except for using "the paddles" or manual chest compressions, which may not be enough to do the job. Dad and the doctors have decided tonight to wait until Friday to see if her white blood cells begin to climb, and if not, they will stop the Neupogen on Friday, give it the weekend to clear from her system, and then perform another bone marrow biopsy next Monday. We hope to find out whether the leukemia is still present in her bone marrow or not, as that will help give guidance to treatment decisions moving forward. We really don't have any good idea whether the cancer is still present or not, so there's no good way for the doctors to give any kind of prognosis, should the counts return and the infections begin to resolve themselves.
On a different note, it appears that my grandmother (Mom's mother), who is an 83 year old Alzheimer's patient in a nursing home near my parents, has developed fluid on her lungs today, and is being given oxygen tonight at the nursing home.
Please pray for God's healing and sustaining hand to be upon both Mom and Mom Mom (that's what we call her), for wisdom for the doctors involved and for Dad as he makes decisions for both Mom and Mom Mom, and for grace and strength for the entire family. Thank you for continuing to faithfully lift us all up before the throne of Grace in this "time of need"!

update on Mom - Tue. night 7/29

After moving out of medical ICU back to the cancer floor (different buildings in the HUP complex) on Sat., Mom was moved back to medical ICU early this morning due to an uncontrollable heart rate and irregular rhythm, and more labored breathing. During the day today, she has become more stable, and is breathing alright now with the assistance of an oxygen mask alternating with a special humidified mask every so often. Her upper airway is just so dry and deteriorated from all the chemo that she can't do it on her own. Her oxygen saturation is still up and down, making her more coherent at times, and less at others. Her blood counts are still extremely low. There are no results yet from the bone marrow biopsy, but we hope to hear something tomorrow. For now, keep praying for strength for Mom and for the rest of us spending time with her. She gets lonely if no one's there, but there's not much we can do for her there in ICU that they're not already doing for her - it's a very busy place, with the nurses in and out more than on the cancer floor. I'll try to update again once we know the results of the biopsy, as that should be the next major news. Thanks for all your prayers and support.

latest on mom

Mom is really having a rough go of it these last couple of days. She moved rooms today - to Medical ICU, and so her room phone # changed to 215-662-4919. She was moved because in addition to pneumonia, it appears she has fluid on her lungs, as well as an atrial fibrillation in her heart, and they are able to more closely monitor those things there in ICU. He mouth is bleeding a lot, requiring the nurses to suction it out frequently. Swallowing the blood has made her just about lose her voice, and she finds it difficult to speak when she has it. She is very weak, in and out coherently, and finds it hard to sleep much. Her blood counts are lower than I have ever seen or heard of (lower than I ever had during any of my chemo or either of my transplants), and basically has little substance to her blood with such low counts.
In spite of all this, she seems to have stabilized between last night and tonight, but she still has a long road of recovery before she might be allowed to leave the hospital for a time, perhaps as early as next weekend, depending on how things progress. They did another bone marrow biopsy yesterday, the results of which should be available on Mon., and future treatment plans depend entirely on those results. If the results show no signs of leukemia, they will immediately proceed to an allogeneic stem cell transplant ASAP, which would probably take at least several weeks to find the donor and get everything ready. If she is doing well enough medically and is stable, she might be able to spend that wait time at home. If the biopsy results still show signs of leukemia, she will be scheduled for another 21 day chemo cycle, beginning with another week of 24/7 chemo, probably beginning the 1st weekend of August.
I am flying down tomorrow to spend several days with her, flying back as far as New Hampshire on Thu. for my next appt. at Dartmouth on Fri., then flying home to Maine. I would not be abe to do any of this with out the extraordinary generosity of the pilots and other volunteers of AngelFlight - thank you all for all that you do for all of cancer patients and their families! These pilots donate their time, the use of their planes, and pay for the fuel to fly patients to their medical appointments, and to see their critically ill family members. I am not sure when I will be able to post again, but I will attempt to do so ASAP, especially once the results of the bone marrow biopsy are in.
Thank you to all who are praying for me and my family during this time, and for mom's healing. Please know that while we can't respond to all of the emails, and phone calls are difficult for mom, she (and the rest of us!) appreciate all the praying you're doing on our behalf.

update on Mom

Mom fought through her week of chemo, and finished up early this past Friday morning. She is now going through a week of bottomed-out blood counts, which will end later this week with another bone marrow biopsy. If the biopsy is clean of all cancer, she will then have about a month off from treatments before undergoing a stem cell transplant (again), to keep the leukemia at bay and hopefully, achieve "durable remission" (the closest one can get to the term "cure"). If the biopsy still has signs of active leukemia, Mom will still get a week off, followed by another 3 week cycle of 7 day chemo, followed by 7 days of bottomed-out counts, a 3rd bone marrow biopsy, and another week of rest. This 21 day cycle will be repeated up to 3 times or until a clean biopsy is achieved, whichever comes first. In either case, Mom is looking at another stem cell transplant in the not too distant future.
Her energy and mental faculties wax and wane daily, but she seems to be on a slow but steady rise since Friday. You can continue to pray for:
1) wisdom for the doctors, guidance for Mom & Dad as they weigh treatment options
2) strength, stamina, proper rest & nutrition for both Mom, who is struggling with mouth sores, and for my dad, who is working during the week in Baltimore and returning home for 3 day weekends to spend almost all of that time at the hospital with Mom
3) for my brother Brian & his wife, Jenn, who are on a much-deserved vacation with Jenn's family after spending most of their time last week with Mom while Dad was at work.
4) for my brother Kevin, who lives and works in the Valley Forge area and is travelling in to be with Mom several times during the week and often on the weekend.
5) for me as I fly down (thanks to AngelFlight!) to NJ this coming weekend to spend a few days with Mom before returning to NH for my own appointments on Fri. Aug. 1.

My appointments at Dartmouth this past Friday July 18 went very well, and the only problem mentioned was that I was dry. I was given a unit of IV saline while I was there, and was encouraged to be drinking 3 quarts of water daily.

Thanks so much to all of you who have been praying for me, and now for my Mom. Keep it up...just when it seems like things are looking up, we "hit the top of the roller coaster" and then go down the other side for a while. I am reminded of the lyrics from "All Part of the Walk" by FFH:
Life threw me a curve
And I was blind-sided
I didn't know
I didn't know

It's all part of the walk
All part of this thing we call
Life and living
It's all part of the walk
All part of this thing we call
The way of giving
Up our lives to eventually find that
You're in control

We know God is in control, but we sure wish he'd slow down on the bumps, and let us know where we're going. For now, we're just along for the ride, and we're holding on tight.

late update

UPDATE - Tue. 10pm: Mom has been officially diagnosed with acute myolegenous leukemia (AML), and will begin a week long, around-the-clock chemo regimen either Wed. or Thu., which kills all of the leukemia cells about 70% of the time. Even if the chemo regimen works, other treatment options will need to follow to keep the leukemia at bay, and those options are yet to be determined at this time.

Mixed bag...my mom

Again, I am sorry for not blogging on this sooner, but this past week has been one of the busiest and craziest since my transplant. My parents were out in California for one of dad's business trips, and arrived home a week ago Sunday, on June 29th. Near the end of the trip, Mom noticed she had developed a number of unexplained bruises and some worse-than-normal fatigue, so she made a dr. appt. for the day after they returned, on Mon. June 30th. When she got to the dr. office, they discovered that her platelets were dangerously low - about 3-5,000 (normal is 150K - 400K), and she was told to go directly to the local hospital in Voorhees, and not to bother going home to get her toothbrush or finish unpacking from her trip. To make a long story short, she was transferred to the Univ. of Penn. hospital in Philadelphia on Wed., and is now awaiting the results of a bone marrow biopsy done over the weekend. It looks like she now has some type of leukemia, or perhaps a pre-leukemic condition (sometimes called myelodysplasia or myelodysplastic disease/syndrome). A definitive result should be forthcoming as a result of the biopsy results later today. Mom has a lot of bruises in various places, and is pretty weak. They had a hard time getting an IV started because of all the bruising and bleeding, but they finally were able to get a PICC line started in her left arm, which they are using to give her whole blood transfusions, as well as numerous platelet transfusions while they await the diagnosis and then come up with a treatment plan.
Lisa, the kids, and I drove down on Thursday, and were able to visit with Mom in the hospital on Fri. and Sat., before driving back north as far as Claremont on Sun. and spending the night there, as I had my own dr. appt. at Dartmouth on Mon. AM (yesterday). My appts. went very well, and other than being a little dry and needing to increase my water intake, I am doing very well. I was even able to drop one of my medications completely while backing down on another. Every other week visits will continue through the end of the summer, but we really have entered a maintenance or watch-and-wait mode, for which I am overjoyed.
The timing of getting my "all-clear" scan, and then having Mom come down with this a little more than a week later is a shock, to say the least, but I truly believe God has a plan and is going to use my experiences to benefit others - I just didn't know it would someone so close to me and happen so quickly after getting "out of the woods" myself. I was able to have some wonderful, sweet conversations with Mom, as well as the rest of my family while we were all together this weekend, and while we are now back home and Maine and trying to catch up on rest and recoup some, we are also preparing for perhaps another trip down to NJ in the near future.
Please pray with us for:
1) wisdom for the doctors and nurses as they diagnose and care for Mom, and as they come up with a treatment plan.
2) clear thinking for both of my parents, as they consider the doctor's words and make some hard decisions.
3) encouragement, clear thinking, and helpfulness for the rest of us in the family, that we might draw closer together through this experience. Patience for each of us as we deal with the news in different ways.
4) continued physical strength and endurance for myself, Lisa, and especially my dad, Richard, as he commutes to work in Baltimore while trying to see Mom as much as possible in the hospital in Philadelphia.
If you're interested in sending mail to Mom in the hospital, the address is:
Barbara Basner
Rhoads Rm. 6017
Hospital of the Univ. of Penn.
3400 Spruce St.
Philadelphia, PA 19104

For more visitor's information, visit this page
If you do go to visit, please remember that NO fresh flowers OR fruit are allowed on Mom's floor.
Thanks for your continued love, support, prayers, and encouragement.

Jon

Long time/No news, but some great stuff now!

I realized on the way home from Dartmouth last night that it has been over 2 weeks since I last wrote, and while I don't like going that long between updates, not much was happening. My last visit to Dartmouth was on Fri. June 6, shingles and all. I went down there while I was hooked up to my portable IV pump, and they went ahead and did a bone marrow biopsy (on the left side, since the right side is where the shingles were). I was unsure how I would feel afterwards as far as traveling back home after all that, but between the pain meds from the biopsy and the lingering effects of the anesthesia, we went ahead and drove home right after the procedure on Friday, arriving home late Fri. night. Not much happened since then, other than my shingles healing up and going away.
Yesterday, during our visit at Dartmouth, we got the results from the bone marrow biopsy 2 weeks ago, which was clear of disease, and also showed full chimerism (I continue to hold the donor graft, i.e. the transplant has fully "taken hold"). I began the day yesterday by having my first PET/CT scan since the transplant (it's usually done between Day 100 and 120, and I was at Day 111 yesterday). After getting some breakfast (I had to fast for the scan), having my labs drawn, going for a Pulmonary Function Test, and waiting almost 2 hours, we then saw Dr. Hill, and since there was such a time gap between the scan and seeing him, he was able to give us the results of the PET/CT right there! This has never happened before, and usually takes 2-3 days at minimum for him to get a look at the film. My scan, which was from top of my head to mid-thigh level SHOWED ABSOLUTELY NO SIGNS OF CANCER ANYWHERE! PRAISE GOD!!! This is the first completely clear PET scan I have ever had during this "unexpected journey", and it feels good to be on the road to remission (they don't use that word until you've been cancer free for at least 1 year, but I'm 1/3rd of the way there!)
We are very excited, but are "cautiously optimistic", as there are still 8 months to go to remission. Continue to pray with us that we'll get there! Thanks for all of your prayers and faithful support during this long and difficult journey. Rejoice with us at God's gracious hand upon us today!

home for my birthday!

I am being discharged from the hospital here in Brunswick shortly, and will be home for birthday dinner with Lisa and the kids! All the arrangements have been made to continue to get my IV treatments 3x/day at home through Sat., and I was able to get up with my dr. at Dartmouth, and we're going to keep the schedule down there this week, as long as the shingles and/or pain don't get worse or spread in the next day or two. So, sometime Thu., we'll head down to NH, and on Fri., I'll see my doc, get an IV treatment (different than what I'm getting here), and then have my Day 90 bone marrow biopsy. We plan to return home to Waldoboro on Sat. During this time, you can pray with us that:
1) pain would remain under control
2) the shingles would not spread and begin to resolve themselves
3) we would have safety driving down and back to NH
4) all would go smoothly with the home treatments this week

Thanks for continuing to check in and lift us up in prayer. I'll update again when we get home from NH, and sooner if something changes, so stay tuned!

shingles all the way!

I was admitted last night to Midcoast Hospital in Brunswick for IV treatment of shingles, and will probably be here for at least a couple days, perhaps up to a week. They would like to get the rash and pain under control, and then send me home to complete the 7-10 days of IV treatments there, but a lot is up in the air since it is the weekend – insurance coverage for home care, communication with my transplant doc @ Dartmouth, actual home care arrangements, etc.

Please pray with us that:

1) the shingles rash and pain would subside and not spread any further

2) arrangements would work out so that I could get back home ASAP, rather than spending a week in here – home by Tuesday would be great, as that is my birthday!

3) Safety for Lisa and the kids as they travel back and forth to visit.

I do have access to email and internet while I'm here.

doing well, doing good!

I had a good visit with the doc at Dartmouth this past Friday - we found out that I gained 5 lbs. over the last 2weeks, which is great news! I will visit my local oncologist here in Brunswick for the first time this Fri. (he was on vacation 2 weeks ago and I saw another doc at that visit). All of my blood numbers are checking out OK, and the only issues are my weight, my energy, & my stamina, all of which should get better with time. Now that we are home, my appetite seems to be coming back a little, and rest just feels more...restful. I will have another bone marrow biopsy on June 6, and my first post-transplant PET scan on June 20th, so you can pray that both of those are clear. You can also best pray with us right now for:
1) continued weight gain
2) an increase in energy and stamina
3) wisdom and discernment for when to call it quits and rest. Now that I have some energy, it is sometimes hard to tell when I've "hit the wall"
Thanks for continuing to check in. I'll update again when and as things change. There's still a lot of healing and recovery ahead, so don't stop praying now...even though things are looking good!

Feeding from the source or eating scraps?

As I was sitting on our deck, eating lunch with the family today, we were able to enjoy several sparrows eating their lunch from our bird feeder. I noticed that some of the sparrows, after scouting out the area from a nearby branch, flew right down to the bird feeder and dug in, eating their fill right from the bird feeder, an almost inexhaustible store of food (to them) – there’s plenty there for many birds to have a filling meal. However, other sparrows, rather than eating from the bird feeder, flew to the ground below the bird feeder, and got their lunch by eating the bird seed that their friends dropped as they ate from the bird feeder above.

If I may, allow me to draw a spiritual connection for us. Some believers have developed the habit of getting their spiritual nourishment from the Word of God, digging into it regularly and consistently, feeding on its spiritual food and nourishing our souls. However, other believers, like the sparrows that fed off the scraps of their friends, get their spiritual nourishment from Sunday’s sermon, perhaps a book they’re reading, a sermon they hear on the radio, or a conversation with a friend who recently had a good “meal” from their own time in the Word. Allow me to encourage each of us that calls ourselves a follower of Jesus to follow his example, and get your primary spiritual food from a regular, consistent time reading God’s Word to us; his letter that gives us instruction, encouragement, comfort, challenge, reflection, and so much more. The more I do this, the more I find exactly what I need in the pages of the Bible. Don’t allow the sum and substance of your spiritual nourishment to come from “the scraps” of others feasting on the Source of all wisdom, God’s Word. Go to the Source, the never ending Supply, and don’t simply survive on the scraps of others.

There's no place like home!

We arrived home in Waldoboro on Sat. about 3:30pm, and after spending the weekend settling in and putting things away, it has been a rather busy week. Monday, I spent a few hours at church catching up with people. Tuesday, I had an appointment in Rockland, and we went shopping for a shed, which will be delivered in a few weeks! Yesterday, I went and picked up my new car, a red 93 Honda Civic (same year as my current blue Civic!) that has no rust and only 17K miles on it! It should last a long time, and help me avoid thinking about how long my car will last and always keeping an eye out for a better ride at a good price. I also was able to be a part of a meeting for church last night.
I am at home today, resting up and recouperating from the busy 3 days, and will visit the local oncologist here in Brunswick tomorrow. They have moved into new offices, so that will be nice to see their new digs! We are starting potty training with JJ today. My next appointment with Dr. Hill at Dartmouth will be next Fri. May 23, and I'll have my Day 100 bone marrow biopsy at my next visit on either Thu. June 5 or Fri. June 6.
I have been able to do more than I imagined these last 3 days, but I am really tired and worn out today, so I'm going to rest today and hopefully be ready for the doctor's office tomorrow. Keep praying with us for healing, rest & recovery, and wisdom to know when to call it quits for the day.

Home again, Home again, jiggety jig!

We just arrived back in Claremont after a day at Dartmouth, and I was give the "all clear" to return home. Lisa is loading the car as I write this, as she had most everything packed last night, and we will push off in the morning to return "HOME" to Waldoboro! We are all excited to be going home. As gracious and giving as Lisa's folks have been, there's just "no place like home"! The kids have been asking the last day or two "How much longer til we go home to our house?" and last night it was "Can we go home to our house for a sleepover?" What a question to get from your kids...we know beyond a doubt that it's really time to get back to our own digs.
I have come a long way in the last 6 weeks, since being released from the hospital for good, and now we turn another corner and enter another new stage...further healing and strengthening - at home! All of my lab reports and numbers were good today, and I even maintained my weight since the last visit. Keep praying for continued healing, strengthening, and safe travels back and forth over the next month or two, as we continue to return here for checkups every 2 weeks.

Rain, rain go away...

I had a pretty good week, with good reports at my clinic visit on Wed. My kidney (and related electrolyte) #s are all back to normal...praise God! I had a pretty uneventful bone marrow biopsy on Thu., and it even went a little quicker than normal. I wasn't scheduled until 1pm, but they took me a little early, and I was able to be back home in Claremont by 3:30! Now we wait for the results of that biopsy, which will hopefully be available at our visit this coming Fri. @ 1pm. I will be getting some treatment that day, and the docs are ordering some additional tests for me that day (so it may be a long day at the hospital!), as they (and we!) anticipate releasing me from having to be "in the local area", and moving to every-other-week visits! Lisa has already started a little packing, and will have most of it done by Friday, as she would really like to go home (our REAL home!) on Sat. if at all possible. Pray with us that all would go smoothly on Fri., and there will be no surprises. I am prayerfully and hopefully expectant, but have been disappointed so many times during this "unexpected journey" that I don't dare to pin my hopes much on dates and goals and outcomes. I am truly learning the truth of Isaiah 30:1 - " Woe to those who go down to Egypt for help, who rely on horses, who trust in the multitude of their chariots and in the great strength of their horsemen, but do not look to the Holy One of Israel, or seek help from the Lord." It is an ongoing lesson, but a valuable one - don't put your trust in anyone or anything but God. Lisa and the kids are hoping to see many of our friends in Waldoboro at church next Sunday - Mother's Day. It will still be some time before I can be in a public crowd like a church service, but al the same, I want to be HOME!

good visit today

Had a good visit at the hospital today. My kidney #s are correcting themselves, and they hope to be able to further back me off some of the immune suppressants after the Day 60 bone marrow biopsy, which will be next Thu. May 1. I should get the results of that biopsy on Fri. May 9, and we may then be released to return home to Waldoboro - pray with us toward that end! We think that perhaps due to the increase in activity level and such, I have lost another 4 lbs., and am now down to 181, although the doc wasn't as concerned about it as I had previously thought. I almost feel like I need to set up an eating schedule, but I know I just can't eat sometimes. The doctor said he was very encouraged to see me doing so well. Keep up the prayers...they are making a difference!

No real news...all going smoothly

There's not really anything new to report, other than the fact that I continue to increase strength and stamina, and have now increased the length of my daily walk by 50%. It has been REALLY nice to have 9 days between doctor's visits, and we hope to learn Friday when my next bone marrow biopsy will be - hopefully, sometime next week. I know I will need some treatment this week, as I'm due for my every-other-week iv/ig treatment this week, and perhaps some magnesium or sodium or something else, but maybe my kidney #s will have improved even further, and all of those electrolyte levels will have corrected themselves. We'll find out Friday! Continue to pray for weight gain, as I'm still pretty thin and most of my clothes still kind of "hang" on me, or so Lisa tells me. I'm just glad to be out of the XL dept.! I don't want to go back to XL, but filling out my large's would be nice. I'll update again after the visit on Friday.

no update...just some thoughts on suffering

One of my favorite preachers/writers/thinkers is John Piper, and he recently 2 message series at a conference in the UK on "Treasuring Christ and the Call to Suffer". You can listen to the messages online or download them from Piper's own website, Desiring God, here. In reading notes about the message on another blog, I came across this quote:

"God is both healer and the one who satisfies the suffering soul. We can glorify God by being healed. Piper said he believes wholeheartedly in the gift of healing. He thinks we should ask God to heal people by placing hands on the sick person’s shoulder. No need to add magic words. “If it be your will.” Just ask. Do what you would want someone else to do for you. If you love people, you will pray for them.

But in verse 23 we groan inwardly. In the midst of suffering that is not removed by healing, the cross purchased the grace to still be satisfied in God. Even we groan. This is there to prevent over-realized eschatology. Since Christ has purchased healing some say it is all now. Excessive charismatics get the notion that we can have every healing now. In fact, the sustaining grace is normal in this age, and the healing grace seems less common. God wants the people around us to marvel at the worth of Jesus when we love him in pain.

Why does the proportion of these two graces work the way it does? When a person is miraculously healed of a cancer, there are several things about that which do not bring as much glory. There are several ambiguities about healings that mean less praise might go up to God. First of all, people doubt the medical side of it and say that the original pictures were wrong. Second, are people praising the glory of Jesus or are they giving glory to health? Third, a few years later the healing is probably largely forgotten and there are no more prayer meetings for that man. In a sense that is perhaps why God doesn't always heal—in order that the value of Christ might be seen in a man who goes on loving God in the midst of suffering."

These are some new thoughts for me on some possible reasons why God may have chosen not to heal me or end my "unexpected journey" with cancer yet - perhaps his greater desire is to develop the prayer lives of myself, my family, my church family, and many friends all over the world, to develop my dependence on Him for daily strength and stamina, or just because He gets greater glory through the choices I make in the midst of dealing with cancer than He would if I was healed (miraculously or through the medicine, treatments, and doctors). If any of those are true (and we will most likely never know this side of heaven), and God is truly sovereign over the lives of all men (and I believe He is!), then I have no choice but to submit to God's will and simply live and make choices that honor and glorify Him today, in whatever condition I find myself, and when it comes right down to it, neither do any of us that call ourselves followers of Jesus.

All quiet on the medical front

I had another Dr. visit today, which was thankfully shortened because my liver numbers have improved enough that I was able to get away with an oral prescription instead of an IV treatment today, so we were in at 8am and out by 10:30am! Everything looked good, and the good news was that the liver numbers all improved at least slightly, and they had been steady at their out-of-whack levels for several weeks. I do not have to return until next Friday, which will be a great blessing. Continue to pray for appetite and weight gain - even with some increase already, I am just maintaining weight at 185, which is better than continuing to lose, but obviously not as good as putting 5-10 lbs. back on, which is what they'd prefer to see. Well, Rome wasn't built in a day and I didn't lose the weight in a week or two, so I shouldn't be surprised that it's taking a while. At least we've stopped the downward trend and with any luck, will start rising a bit. Thanks for continuing to check in, and for continued prayers and encouragement.

great news...as good as it gets!

I had a good visit today with Dr. Hill, followed by infusions of magnesium and Iv/Ig (a protein that all transplant patients need every 2 weeks for a while after transplant).
The highlight of the day actually came right after we got back home - there was a message to call in, as they had the results of my bone marrow biopsy. First, there were no signs of cancer in the marrow, which we didn’t expect but is good, nonetheless. Secondly, the results of my chimerism studies came back this afternoon, and show that I am already 95% engrafted, which is pretty high for only 30 days out. Usually you work up to 90-95% within the first 100 days. What this means is that my blood and marrow are already showing up as 95% “donor” (new me) and only 5% “old me”. They consider anything above 90% fully engrafted, so there really isn’t room for improvement, but they will monitor every 30 days to make sure the graft remains.
My kidney numbers are still a bit out of whack, but after consulting with the kidney doc, Dr. Hill has decided to chalk it up to some of the meds I am on, which we can't exactly stop or back off, and so we're just going to watch the numbers carefully to make sure they don't go any higher. My kidneys are just "off" enough that my creatinine is high, magnesium & sodium are low, and potassium is high, though none of them are in the danger level. They told me today that I will need to plan to get weekly infusions to treat these deficiencies, which will just make the days I have dr. visits about an hour or two longer.
More good news - they have decided I can now go to once a week visits, so the only day I have to trek up to the hospital next week will be Wed. Starting the following week, we are going to try to have our weekly visits on Friday, as it seems to be a quieter day up there, and Dr. Hill is seeing patients almost all day.
So, praise God with us that all signs of the cancer are gone (results of my last chest CT scan were also clear of any sign of cancer, and that's the last place we saw it), I am already fully engrafted, and am stepping down to weekly visits. All are definite signs of progress! Continue to pray for my strength, energy, & stamina to return, and thanks for checking in.

lotsa docs!

We were at the hospital yesterday from 9:30am - 5:30pm, and then back today for a consultation with a kidney specialist after lunch. Needless to say, I am glad I don't have to return until Friday. Yesterday, we began the day with a CT scan, followed by the normal blood labs and a visit with Dr. Hill, and then I had to get infusions to increase my magnesium and decrease my potassium, both of which worked for now.
We discovered I had lost about 9 lbs. in the past week, and am now down to 184. I was told that I need to force myself to eat more often (at least 5 times/day), and was encouraged to eat pretty much anything that looked/sounded good to me. It was strange advice for me, but I understand the intent. They are not terribly concerned about my weight yet, but really don't want me losing any further weight. I was told to go for the gusto on ice cream, shakes, pudding, smoothies, and pretty much anything with high protein and calories. We also figured out that part of my stomach distress at night may be stemming from the fact that I take 12-15 pills just before going to bed, and have been doing it on an empty stomach. Last night, I tried eating a little something with it, and had no problems, so hopefully that problem has been solved.
The kidney specialist today looked at my numbers, which have been consistently high for a week now, but said there's not a whole lot we can do to change it, and for now, we should just watch and wait and hope they eventually come down and don't go any higher. I do have to do one other test on the kidney, but it hasn't been scheduled yet.
I am feeling quite a bit better, and have more energy than I did even this weekend. I was encouraged to hear Dr. Hill say that if my lab numbers are good enough this Friday, we could look at going from 2x/week visits to weekly visits! I also found out that we will not see any results from the bone marrow biopsy until at least Friday. Keep praying!

Had good visits with both Dr. Hill & the infectious disease doc yesterday, and things continue to look good. Lab #s looked better, no fevers, and Dr. Hill even said it appears I am engrafting well. I had my 30 day bone marrow biopsy, which will give the first real empirical evidence of how much I've engrafted. We hope to have those results Mon., but won't hold our breath. Each day, I get stronger, my appetite is improving, and I'm feeling better. Though most of my skin is now dry & flaky, my hands are much less swollen & sensitive, which makes a lot of things easier.

progress being made

I had my first visit with the transplant doctor in the clinic today since being discharged on Sat., and it went reasonably well. They are a bit worried about some of my blood #s, but only marginally so, and not enough to do anything except watch them when I go in again on Friday. We did have to wait almost 2 hours to see the doc, which was frustrating, but there was some sort of emergency in the clinic, so we made do as best we could. At least I was able to lay out on the exam table, although both Lisa and I had to cover up with our jackets, as it was FREEZING in the exam room today. So, the plan is now for me to get more lab work done on Fri., visit the infectious disease specialist (just to check on my lung status), have another visit with Dr. Hill around 10am, and then I have my 30 day bone marrow biopsy on Fri. at lunchtime. Pray the biopsy goes well, and shows that the donor's cells are at least starting to take over. Right now, the best thing you could pray for is my dry skin, which is due to GVHD. My hands, knees, and to a lesser extent, my face, are all peeling, cracking, and flaking away. While this is a sign that the donor's cells are taking over, and is thus an overall good thing, it still makes the skin puffy, swollen, dry, & tender. They gave me some tips today on some stuff I can use to moisten the skin while waiting for the sloughing off process to complete. They also told me that for most people, these symptoms only last 2-3 weeks before fading away. I'll try to update again when there's more news to share. Thanks for your continued love, prayers, & support!

going home

The docs came into my room this morning and said I can go home today, so preparations are being made in that direction right now. My med list is in the process of being updated, Lisa is on her way up to help get me packed up and out of here. I don't need any fluids or anything before leaving, so it should not take more than an hour or so - I should be out of here and on the road "home" to Claremont before noon. I can't wait to be out of here - I originally came in and received my cells on Feb. 29, and here I am finally going home on Mar. 29. Continue to pray that I would be able to remain fever-free, and that I will have good office visits next week on Tue. & Fri. They are also scheduling my Day 30 pain-free bone marrow biopsy for next Friday, as well. That will tell them how much I am taking on the traits of the donor, and is the first important milestone. Thanks for your continued love, prayers, encouragement, & support.

a good boring day

No temps today, I continue to feel better and build my strength. I had a much better night's sleep last night without a fever, and anticipate more of the same tonight. All the nurses seem to be pulling for me to go home, but the docs just keep saying "let's take it day by day". They did say it was possible they might send me home sometime this weekend, but felt like Mon. was probably more realistic. They want to make sure I am free from fevers for at least 3 days, and all other indications are headed in the right direction, too. I had another chest CT scan today, and will hopefully get good results tomorrow AM. I am still coughing a good bit, so we need to pray that I would be able to kick that so I can get out of here ASAP. Hopefully, tomorrow will be just as uneventful as today, and continued progress will be made towards going home. You can also pray that some mouth sores that have shown up would disappear. They appear to be related to the GVHD, so they're not too worried about them, but it is making it a little difficult to eat certain things. Thanks for your continued prayers and support.

Here we go again...

(Written by Lisa): Well, things have changed a bit since Jon's post yesterday. Yesterday was a very good day for him.....until last night. He got a fever that lasted most of the night, so obviously Jon is still in the hospital. The docs are trying him on a new antibiotic, and so far today he hasn't had a fever. He's still pretty wiped out from lack of sleep (because of the fever), but he's feeling OK. His blood counts were good today except his white blood count, which was extremely high (indication of an infection). So obviously something is going on. We (and the docs) just don't know what it is yet. Hopefully with a change in some of the meds, his temp will stay down, and his WBC (white blood count) will go back to where it's supposed to be. We are both discouraged by this turn of events, but we both agree that we would rather have him get a fever while he's in the hospital, then to have him home and have to turn around and come back. Keep praying!

no results + no fevers = good news

We learned today that there are no conclusive results from the bronchoscopy I had done on Sat., which the transplant doctors said was a good possibility. So, while we don't know and probably never will know exactly what was causing my fevers, I have continued to steer clear of them (last one was Sat. night), and continue to gain strength and walk around the pod. There is talk of sending me home Wed., or if not, Thu., assuming I remain free from fevers, so please pray with us towards that end over the next 2 days. I am so looking forward to getting out of here! More later.

48 hours and counting...no fevers

Thought I would post something myself since I am feeling a bit better tonight. Another boring, uneventful day...too many more of these and they won't be able to find a reason to keep me here (I hope!). I have not had a fever for 48 hours now, and am feeling quite a bit stronger than I did even yesterday. I did some laps around the pod this morning with Lisa, and then again this afternoon when Mim & Steve brought Jilli & JJ to visit. Since the room I'm in now is a bit smaller than the one I was previously in, we spent most of the visit in the library, which gave the kids some room to move around. They did want to see Daddy's room, though, so we came back, and it was all we could do to convince & explain to Jilli that Daddy was NOT in the same room I was every other time she'd come to visit. She kept saying "But Dad, that means someone ELSE is in YOUR room!" I don't know if she ever really bought into it, but its hard to argue logic with a 5 year old. It was good to see them - I hadn't seen them since Thu. AM when I left the house for my 1st clinic visit, and was of course admitted straight here from there. There is some talk of getting out by the end of the week if I continue to stay away from the fevers, so pray towards that end. No further results yet from the bronchoscopy cultures yet...probably sometime tomorrow. I'll try to update again when there's some news.

Easter Sunday

(From Lisa): Today was a much better day for Jon. His appetite, blood pressure and temp was much better. He did have a fever last night, but we think it was from having the brochoscopy yesterday. The docs were glad to see such an improvement since yesterday, which was good to hear. One of the transplant docs said today that it is possible they won't figure out what caused Jon's fever, but as long as his temp stays normal, they don't worry about it. He said it is quite common in immune suppressed patients to have these fevers with no cause that they can find. We just go with the flow, as we keep getting told different things. As long as his fevers don't come back, we won't be worried. Hope you all had a wonderful Easter!

Post procedure

(Written by Lisa): Jon is back in his room after having his brochoscopy. He's quite sleepy from the meds, and he has to wait a while before he can have anything to eat or drink because they numbed up his throat to eliminate his gag reflex. Last time he had this procedure, it took a couple of hours to wear off.

I talked with one of Jon's docs this morning, and their feeling is that he has fungal pneumonia from the way things look on the CT scan. We are not going to find anything out for several days - maybe Tuesday. There are a number of tests and cultures that have to be done on the cells they collected, so we wait...again. Jon had a fever last night, but he did not have one this morning! He is still being treated with a number of antibiotics, and he's on one antifungal too.

The best case would be for this to be a bacterial pneumonia, as that is very easy to treat. Fungal is still treatable, but it takes a long time to completely rid your body of it - think of a mold problem in a house, only you can't just gut the problem out. Jon is also very immune suppressed, so that adds to the complication. Our prayer is that the docs would know definitively what the problem is, that he is able to be treated quickly for it without further complications, and that he continues to be fever free.

Quick update

(Written by Lisa): I just wanted to let you all know an update. Jon got the results of his CT scan, and there is something on the scan that appears to be an infection of some sort, maybe pneumonia. The problem is the docs can't tell from scan if it's viral, bacterial or fungal, so tomorrow morning at 9 am Jon is having a brochoscopy done. He is also running a fever again tonight, so he's not feeling very good. Pray that the procedure goes well, and that it is absolutely clear what the infection is. Also pray for Jon that he sleeps well tonight.

More tests.......and too many needles!

(Written by Lisa): Today has been an OK day. Jon's temp keeps going up and down, and each day he has a fever they have to draw cultures from his port and from his arm, which means he has to get stuck. The people who came today to draw from his arm were not the best, and they stuck him 6 times between the two of them - I thought Jon was going to pass out, but after resting a bit, he was OK. We finally told them to get someone else, and a while later a lady from the IV team came and stuck him once and got everything she needed! We were both thankful for that, and hopefully his temp will stay down, so they don't have to do it again. The docs have put him on a broad spectrum of antibiotics and antifugals as they want to kill anything that could possibly be causing his fever. Once all the tests and cultures come back they will know more...or maybe not. It's very possible this could be a little bug (which wouldn't show up in the tests and cultures) that will just run its course and be done - the docs think that is quite likely, but they still want to make sure they are not missing anything. Hopefully it will run its course quickly, so he can get out of here. Right now he is headed out for a CT scan to check for things they might be able to see. Again, we hope they find nothing.

If he's up for it, I'm hoping to bring the kids in tomorrow for a bit - we're doing an Easter Egg hunt in the morning, so I know they will want to tell Daddy all about it!

Back again

(Written by Lisa): Well, Jon's time at home was short-lived. Last night he started running a temperature, so we called the doc, and he said to stay put, as they would see him the next morning for his regular appointment. When we got here, Jon was still running a temp, so they decided to admit him. Cultures and labs were drawn, and he got a chest xray. It will be quite a while until we know anything from the xray or cultures, but his labs were good - his blood counts continue to improve! The doc said he was doing quite well, but they want to be very cautious with this fever. His temp went down this afternoon and so far hasn't come back. Hopefully it will stay that way. His doc said he'll hopefully only be in for a couple of days and then come home. He would really like to be back in Claremont for Easter, even though he can't go to church. He wants to see the kids dressed up in their Easter best!!

Selfishly, I want Jon to be with all of us in Claremont, but I know he needs to be here to continue his healing process. We are praying the docs don't find anything of significance that can't be easily treated. Pray for Jon's spirits - I know he is discouraged with having to be back in the hospital, but he also knew when he was discharged that this was a real possibility, given his history and the transplant he just went through. He just didn't expect that it would happen this quickly. Very few people come through these things with little or no hiccups.

Thank you for your cards and emails of encouragement - they mean more then you will ever know. Thank you also for your consistent prayers - keep them up!

Day 2 at home

Thought I'd write briefly about the almost 48 hours since I was discharged. I slept 2 hours Mon. afternoon, 12 hours Mon. night, an 1 and 1/2 hour nap on Tue. afternoon, and then almost 10 1/2 hours last night, and I am still sluggish, weak, and tired most of the time. It takes several minutes of sitting and resting between walking to the bathroom, getting dressed, and other normal activities, as I can only go about half speed and still require frequent stops to catch my breath. I am spending a lot of time in a recliner that's been setup for me in the upstairs landing (open room at the top of the steps). This way I minimize trips up and down the stairs to no more than 2 per day (that really takes it out of me). It is about all of the exercise I can handle right now.

I have my first outpatient clinic appointment tomorrow at 9am, which means we have to leave the house around 8, having already had breakfast and all my pills down. Guess I"ll be hitting the pillow a little early tonight. So far, no major complications, so keep praying for continued recovery and gaining of strength. Your many cards and emails of encouragement mean so much, and I feel bad we can't respond to all of them individually. We love you all and appreciate the role you're playing in our lives.

Day +17

(Written by Lisa): Most of you have probably heard through the grapevine that Jon was discharged this afternoon!!! They couldn't get his paperwork finished fast enough for him - he was ready to run out of there as soon as they told him he could go (10 am). We didn't actually leave until 3 pm. He is glad to be out, and he is pretty wiped out from his big day. Hopefully over the next couple of days he will feel up to writing again, but until then, you can all rejoice with us that he is home (at least in Claremont with us!).

Day 15

Well, the doctors were again pleasantly surprised at my progress this AM, and indicated if all goes well, they may give me clearance Sun. AM to check out of here on Monday! Please continue to pray toward that end...God is influencing the hearts and minds of doctors. Lisa and JJ got here at 10am, and shortly after, Mom Mom & Pop Pop brought Jilli in from her night in the RV. She had a blast, and could not stop talking about it! WE watched some LIttle Einstien videos while we waited for the doctor to show up on rounds (they do them a bit later on the weekend). Nothing new to him that would seem to keep me here. Hopefully, 12 hours from now, I am hearing the words "go home tomorrow"! That would be wonderful. It will remain to be seen whether they can schedule to have my central line removed early enough on Monday. If not, the docs told me I can go home with it, and they'll make an appointment later in the week for me to have it out during my first clinic visit, which will probably be Wed. or Thu. if I go home Mon.

Mom & Dad were nable to get out of here in time today to hit the dump station, so they decided to hang around through the day, and will leave first thing tomorrow AM to return to NJ. Dad is excited because he found a new dump station at a new Cabela's store in Hartford, CT, so they're going to go there on the way home rather than try to hit the place up here (Cabela's is cheaper, too). I will try to post as early as possibe in the afternoon whether I am going home Mon.

Even if it ends up being Tue., it would be a good idea to redirect al future cards, encouragements, etc. to Lisa's folks house:
c/o 95 Maple Ave
Claremont, NH 03743

More tomorrow...keep praying - the end is almost here!

Not much news...lots of walking

Not much to report today - my numbers continue to increase, and the docs have said if all continues in this direction over the weekend, they will tell me Mon. AM when I can go home! I can't wait for Mon. AM now! I am so bored, my counts are doing better than before I came in, and I feel like I have no real reason to stay here one hour longer, much less over the weekend! However, I know the docs have my best interests in mind, and are just being cautious. Pray that I could bide my enthusiasm until Mon. AM, and that they will tell me that I can go home on Monday, or Tuesday, at the latest. That is the focus of my hope and prayers right now - getting out of here.

Jilli is spending the night tonight with Mom Mom & Pop Pop out in the RV, and boy is she excited about it. Mom & Dad tok her for dinner at Applebees (one of her favorite restaurants), and they had a blast. They just stopped back in here to give loves before heading out to the RV to snuggle in for the night. Lisa just left, but will return in the AM with JJ, and I'll take him for a walk. I am doing a lot of walking these days. I got to go outside today, and boy was that nice, even though I had to drag my IV pole with me. After I was unhooked around suppertime, Lisa and I then went up to the 5th floor, which is pretty sparse on a Friday night, and walked at least a half mile (with a few rest stops along the way). I am definitely getting stronger and feeling ready to tackle the outside world.

JJ and Jilli will ride back to Claremont tomorrow afternoon in the RV with my folks, who will drop them off and then keep on going home to NJ, since I am so close to getting out of the hospital at this point. This way, perhaps they can both be back to work on Monday, assuming they don't hit any snags on the road and are able to get the RV all cleaned out and back to the storage place by end of day Sunday.

Pray for an uneventful weekend (no surprises or new developments!), and that things will work out so I can go home Mon. or Tue. - especially pray that the doctor's minds might be led in that direction. If God can influence the hearts of kings & rulers, He can certainly influence the thinking of my docs and assure them that I will be fine "on the outside". Thanks for keeping up.

Day +13

(Written by Lisa): The last few days have been very good for Jon. He's felt better each day, and his fevers have not returned. I brought the kids up to see him this morning (Jillian is much better), and things were great - we took a few laps in the hall, the kids had snacks, played with toys, and watched a video. Just as they were getting ready to leave and go out to the RV around 11:15, Jon vomited. We're hoping it's from over stimulation. He is resting now, and is not really looking forward to lunch, but we're hoping this is an isolated episode. We'll see. The docs are encouraged with how his numbers continue to climb, and they want to see how he does through the weekend, and hopefully on Monday they will be able to tell him when he can go home (Tuesday, maybe???). They are being extra cautious with him where he had lung involvement and had part of his lung removed, but it is frustrating for Jon as he is feeling good for the most part - he' pretty bored. At least the end of his hospital stay seems to be in sight soon.

Day +11

(Written by Lisa): Well, there is not much to report today, thankfully. Jon is doing pretty well, and he's eating pretty good. He's pretty bored and anxious to get out of the hospital. The docs haven't given any indication as to when he will be out, so we've been bringing in movies, games, anything to help pass the time. The kids were up to see him yesterday; unfortunately Jillian is sick again, so we're counting down the 48 hours for her to be throw up free, until she can visit Jon. Hopefully today will be it.

Day 10 - Engraftment Begins!

A better night's sleep was had last night than in several previous nights mainly because I had no fever or infection again! My blood #s this AM came up nicely together, showing that I am beginning the engraftment process, where the real "danger" or prayer need shifts from infection to Acute Graft Vs. Host Disease, which will be a (hopefully quick) battle between the donor's cells (graft) and my own immune cells (Host). The idea is that we want some GVHD, but just a little, and very mild, please! If there's no GVHD, the graft isn't really engrafting and becoming part of me. Acute GVHD will most likely show up over the next 7-10 days (but could really be anytime before Day 100) in my eyes, gut, or liver. So, pray that there is some side effects but as minimal as possible once noticeable!

I also was able to have Lisa's folks come & visit (while the kids played out in the coach) this afternoon, and then they went to dinner by themselves to celebrate Steve's birthday. Mom Mom & Pop Pop then took the kids to eat at McDonalds, and when they returned, Lisa took them home. I am updating you all right now, and then I am calling it a night so use my new sound machine - it helped me get back to sleep at 3am last night, so I'll try it again. We'll see what tomorrow brings. Thanks for continually checking in on us and lifting us up!

Day +9

(Written by Lisa): Big praise - Jon kept down all of his meals yesterday and breakfast went fine today!!! Yeah!!! His blood pressure is up a bit, so he doesn't have to be monitored so closely. But the docs would still like to see it a bit higher. His rash is slowly improving, so that is also good news. The pain in his legs and arms seems to be improving, and even though he did have another fever last night, it wasn't as high, and it didn't last as long. They are giving him meds (antibiotics and antifungals) as a protocol help reduce and eliminate the fevers, but the antifungal meds are giving him pretty bad hallucinations. Yesterday it was just crayon marks on the ceiling, which is pretty typical, but today it's been much worse (he's seeing people, the beach in California, feels taps on his shoulder, hears people whispering, and things have been rearranging themselves around the room). Thankfully, he does know that these things are not real, but it's still weird for him to have it happen. The hallucinations seem to be getting worse as the day progresses, and Jon is having a difficult time concentrating - it's really messing with his brain, so the docs are going to change his meds. The new meds do not have hallucinations as a side effect, thankfully, and hopefully they will continue to keep reducing his fevers, and eventually elliminate them. Hopefully the rest of today (and the rest of his hospital stay) will be fever and hallucination free!!

Day +8

(Written by Lisa): Things continue to be interesting around here. As I mentioned yesterday, Jon's breakfast stayed down, but then later when he tried lunch, it came right back up. At some point in the afternoon, Jon's blood pressure got really low, and the nurses and docs wouldn't let him get out of bed without someone being right here - they were afraid of him falling over. Not sure why it's dropped, but it continues to be a problem today as well. Since his blood pressure is low, he is also having a more difficult time catching his breath, and his oxygen level dropped, so he is also on oxygen. He also had another fever last night during the night, so when I got here the am, he was down getting another chest xray. He is also experiencing pain in his elbows and his legs - no explanation from the docs on that one. His rash seems to be a bit better, but it is still there. He seems to be retaining some fluid, so the docs are giving him meds for that, but a side effect of those meds is that it can lower your blood pressure, so they are watching him very carefully. As the medicine works, he will hopefully feel a difference in his breathing and maybe his joints (here's hoping). It's been quite a 24 hours, but Jon is still in good spirits and is feeling pretty good in spite of everything. Once again, breakfast stayed down this morning, so we're praying that lunch does too!

Day +7

(Written by Lisa): I am currently in Jon's hospital room with the kids - we got here early, and then we're headed to my Aunt's house to go sledding. Jon has had a few difficult nights as his fevers keep returning each night, so he doesn't get much sleep. As a result, he has to get chest xrays and they come and draw cultures out of his arm - we are now at 3 nights in a row. He's also has a rash that bothers him, and they think it is from one of the antibiotics, so they are taking him off of it. If it goes away they know it was the drug. If it doesn't, then it's probably a reaction to the transplant (called "graft verses host disease"). We'll wait and see what happens. He's in pretty good spirits for the most part, and it been good for him to see the kids, but he is exhausted. Probably as soon as we leave here he will take a nap for a while. Please pray that Jon can get some rest today and that he sleeps well tonight, and that his vomiting continues to stay under control (breakfast went good today).

Day +6

I felt pretty good yesterday afternoon, and even took a shower and a walk! But then around 8 pm I got another fever, not as high as before, thankfully, but a fever none the less. The fever continued off and on through the night, once again hampering sleep, and of course I had to be stuck again in the arm for cultures (still no results - maybe tonight?). Still had a slight fever this morning, but not much would keep me from seeing my kids. They are both healthy, and I haven't seen them in almost a week. Lisa brought them in around 11 am, and I was as excited to see them as they were to see me! I think they both grew an inch! They are out with my parents in their RV in the parking lot watching a video. My room gets small with two toddlers in it, so we're glad to have grandparents nearby to entertain.

As far as meals, breakfast came right back up as soon as I ate it, but I'm having better luck with lunch so far. Last nights dinner was great with absolutely no nausea!!! Keep up those prayers!! Because of my fever, I am now on a second heavy duty IV antibiotic, which is also giving me an itchy rash - hooray. There is a possibility of the transplant causing a rash, so I'm thankful that this one seems to be drug related.

I've enjoyed all the cards and emails you all have sent. Hopefully I'll feel like updating my blog tomorrow, but if not, Lisa will catch you all up. I'll just take it one day at a time.

Day +5

(Written by Lisa): For the most part things have been going quite smoothly for Jon. However, given his situation, we were both wondering when something was going to happen. Last night Jon developed a fever late in the evening. He has to get heavy duty antibiotics every 8 hours, and the nurse took blood cultures out of his central line (similar to his port, but it goes into his jugular vein). The IV team came in and took blood cultures out of his arm (he hates getting stuck with needles - he veins are pretty shot from all the chemo, so it usually takes 4 - 5 times before they hit a vein), just to be on the safe side in case there was an infection in his line. His fever broke sometime between 1 am and 3 am, and he didn't get much sleep last night because of that. And then it came back this morning. The nurse called me to let me know what was going on, so I wouldn't try to bring JJ in (he hasn't gotten Jillians virus, thankfully). She transferred me into his room, so I could see how he was, and he was feeling very nauseated, sore all over, and kind of out of it. Of course I left right away and by the time I got here he had gotten some meds and was feeling a bit better and eating toast, but still very much wiped out. The docs don't know what caused his fever - could be any number of things. His counts are very low, so it could be a neutropenic fever (white counts so low that any type of infection just takes over), or it could also be his body reacting to the donor stem cells. No one knows at this point. Anyways, we have to wait 48 hours for the blood cultures to come back before the docs can rule out certain things...so we wait. Seems like we do a lot of that lately. The fever has taken a lot out of Jon in terms of energy, but hopefully with some rest he can regain some of his strength.

On a good note, Jillian did not throw up last night, so if she can make it through tonight, she can come visit Daddy (if he's up for it). Thank you all for your continued prayers!

Jon's mailing address

Here is Jon's mailing address here at the hospital:

Jonathan Basner
Room 126
DHMC 1 Medical Center Dr.
Lebanon, NH 03756

Thank you to those who have already sent out cards to him. He's got them posted on his wall!

Day +4

(Written by Lisa): Well, breakfast and lunch are not going so well for Jon these days. Since having his TBI (total body irradiation) on Friday, he has thrown up one or the other almost every day. The docs think it is just a severe reaction to the TBI, but they expect it should only last another day or so.....I know Jon hopes that. He's tired of throwing up, and when he does, they give him nausea meds which make him dopey, so he sleeps quite a bit.

I think Jon had mentioned in another posting that Jillian has had a stomach bug since Friday night. We thought she was out of the woods because she didn't throw up on Sunday night, but then at 3:30 am this morning, she was at it again. My Mom and I got her cleaned up and back to bed, but of course sleep escaped me for another couple of hours. Every time she throws up, she has to wait 48 hours before she can see Jon. She misses him terribly and is very upset that she can't come. She seems to feel fine during the day and hasn't run a temperature, but at some point in the night she throws up. Kind of weird and very frustrating. As strange as it is that both Jon and Jillian are throwing up, the docs are confident that they are not connected.

The nurses are keeping Jon busy with laps around the unit. 40 trips around is a mile, and they like to see him do 20 a day. So far he's done pretty well. He does get out of breath very quickly, so he takes it 5 laps at a time. Hopefully over the next couple of days Jon will feel like updating his blog, but if not, I'll continue to keep you all informed of the goings on here at Hitchcock Hotel.

just 2 doors down

Today was not too bad for me. I did have some nausea and vomiting during breakfast, so that wasn't a nice way to start the day, but I got through lunch and dinner without a repeat performance! I tried to listen to the FBC church service online this AM, but technical details prevented that, so I did some reading and then slept some more in the afternoon. Got in 2 trips of 5 laps each - 1 just after lunch, and 1 just after dinner. Lisa was not able to come visit today, as Jilli is sick with the stomach flu (2 nights in a row of "frooking out" between 8:30 & 10pm). With the busy schedule Lisa's folks have at their church, she had to stay home to be with Jilli. JJ did get to go to SS and excitedly told me all about it on the phone tonight.

While I was out for my first walk, I noticed a catholic woman waiting in the hallway, and struck up a conversation with her. She is a chaplain, and was here for the family of a man 2 doors down from me. When she found out what I did as a pastor, she then asked if she could come over and visit sometime, and so I look forward to (again) sharing the Gospel with a "woman of the cloth". If you think of it, pray for the man 2 doors down...they won't tell me his name, but his family is all crying on their cell phones in the hallway, and he doesn't look good at all.

Not much new to report - just praying and hoping for a little better night of sleep tonight than last night. It wasn't too bad, but it took a while to get to sleep, and then I was up for almost an hour around 2am. Still waiting for a good, full, uninterrupted night of sleep. Pray with me, and keep the prayers rolling!

A pretty boring day

After all that happened yesterday, today was pretty boring, which I much prefer! I have walked almost a half mile today (around the pod here - 40 trips is one mile), and am feeling pretty well, given the circumstances. I did have some struggles this morning with nausea, but some meds took care of that pretty quickly, and I was able to eat much better today. They are trying to control my weight closely - they don't want more than a pound or so over what I came in as. They tel me that this is because the cell walls will be weaker, and that will make the engraftment process more successful. To do this, I will be getting Lasix daily, which requires many trips to the restroom (good thing it's just across the room from me!) Not too much else to report - guess that's good.
We got some snow this morning, but not as much as they were predicting, and they are calling for more mild temps over the next few days, and then another storm on Tuesday. I'll post more when there's more to say. Keep praying...it helps immensely to have my prayer poster here with me, and be able to roll over and see who's praying for me anytime of the day or night (Ken Merrill - I felt your prayers at 3am this morning, when I couldn't sleep!) Keep checking in...you never know when I'll have more musings.

I'm a New Man

(Written by Lisa): As we speak Jon is getting his donor's stem cells!! Yeah!! The nurse said they will probably take two hours or so to drip in...kind of like a blood transfusion. We found out something very interesting about his new cells. Jon is O positive, but his donor is A positive for blood type. His nurse said that eventually, Jon's blood will change over to A positive. Weird, huh?

This morning we had to be here at 8 am for Jon to get his TBI (total body irradiation), and of course they were running behind when we got here - you'd think at 8 am there wouldn't be a chance of them being behind! I'm just glad we didn't have a 3 pm appointment. The TBI made him quite sleepy (along with the premeds he had to take), plus it upset his stomach, so lunch wasn't a pretty sight. He got done with TBI around 10 am or so, and we headed down to 1 west, where his room is. They actually had it waiting for him. Right now he is sleeping while his cells drip in and occasionally nibbling on dry toast. Hopefully dinner will be better. The nurse said upset stomach is pretty common after TBI.

Both of Jon's parents are here this week with their RV. Security is letting them park right near the entrance by Jon's room, so they can come and go as they please. When the kids come to visit, they'll be able to have some time out in "PopPop's bus"! Actually, both of them call it "MomMom's coach" and "PopPop's bus"! It's very cute.

Hopefully later on tonight or tomorrow Jon will be able to update. Pray for him that his nausea would subside, and that he would have minimal side effects from the transplant.

The yuck has arrived

I made it through the snow both Tue. and Wed., and got treatments both days, as well as a nebulizer treatment of pantamidine, which should prevent PCP pneumonia, a common opportunistic infection that affects those with weakened immune systems. The pantamidine is being given because I can't take the Bactrim pills that are usually used, as they would cause my blood counts to drop too much. The pantamidine was difficult, and caused me to choke so much I felt like I was going to throw up, so I took some Ativan in the middle of the treatment, and that helped get me through it. The tech administering the treatments told me to use my inhaler next time before the pantamidine, and to rest every few minutes so I don't get a coughing fit so bad that I throw up.
I am enjoying my "day off" about as much as I can, given that I am a little nauseous from all the treatments and then all the drugs I have to take in addition to the treatments. The only task for today is to pack up for the hospital, but given that Lisa will be driving back and forth most days and my parents will be in their RV out in the hospital parking lot, it won't be a big deal for them to bring in more clothes for me and such.
Well, I'm going to go take a nap - the morning meds are making me really drowsy. Hopefully, I can sleep off some of the nausea before dinner - a sort of "last supper" before checking in at "Hotel Hitchcock" that I hope will taste good. Next time I post, I'll probably be doing so from the hospital. Talk to you next "from the other side"!

And so it begins

It has begun. Today was another long day - what was to be about a half day turned into a full day for various reasons. I arrived about 8:30 for bloodwork, which went rather smoothly, then down to the opposite end of the DHMC complex for my central venous line to be surgically placed. This went pretty quickly, too, but then the blood work results came back showing continued low WBC counts, so another bone marrow biopsy was ordered, and I was fit in to the schedule there. Even then, I was out of recovery and ready to go down to the HSCU to get my first chemo treatment, which I had been told would be about 30-45 minutes. After finally getting my first food of the day around 2pm, we waited until almost 3:30pm to get the chemo, as they said they had to weigh me again in order to properly dose the chemo, the pharmacy had to mix it, check it, and then transport it down to the floor, so it didn't actually finish infusing until about 4:15pm, and we were able to leave about 4:30.

Tomorrow, we'll head up there around 10am, as a storm is coming through, and they said I can show up as early as 11am for my Day 2 dose. Right now, I really don't feel any chemo effects yet - just a considerable amount of pain from the line insertion. The rubber catheter is inside my jugular vein, and tunnels under my skin along the collarbone, exiting the skin near my right armpit. There's a good bit of tugging and pulling anytime I move my head or neck, but it is less with my painkillers. Hopefully, I will continue to get used to it. That's all for now - a long day needs to end with my head hitting the pillow a bit early, I think!

All set

In the midst of another snowstorm, we made it up and back to Dartmouth today, and everything is set for me to begin the chemo part of my transplant on Monday. Final results of my most recent PET scan were conclusively and finally completely clean, so I now have the best chance possible of having a "successful" transplant, with no future recurrence of the lymphoma.
When I got to the hospital today, I had to do another pulmonary function test, and another chest X ray. While the chest X ray results weren't available before I came home, I did learn that I have gained almost 10% lung function since my last PFT on Tue. Feb. 12, so things are headed in the right direction. I also realized why it seems like I am always out of breath - even with the recent gains, I am still only functioning at about 36% of what a normal guy my age should be, compared to 56% prior to the lung surgery. Blood numbers were run again, another physical exam, and then the review of the transplant procedure and signing of the consent forms.
So, now we kick back, enjoy the weekend, and prepare for the "chemo grind" next week. Actually, the treatments will only be 30-45 minutes each day, so I'll be here in Claremont more than I'll be at the hospital, at least until Friday. On Monday, I return to the hospital at 9am to get my central line placed, after which I'll receive my chemo through it. I will also start some of my immune suppressing drugs on Monday (other won't be started until Wed.), and when the chemo treatment is done, I'll head back to Claremont for the night, returning Tue. & Wed. for repeat chemo treatments. On Thu., I get the "day off" and will stay put in Claremont, and then next Fri. Feb. 29, I will show up in the morning for a very low (lower than usual) dose treatment of Total Body Irradiation (TBI), and will then be admitted mid-day before getting my donor's cells infused sometime in the afternoon. Then, the wait for engraftment begins.
So, that's where things are at tonight. I'll update again early next week after chemo starts. For now, keep praying for smooth sailing!

Right on track

We are busy (especially Lisa!) getting things packed up and ready to go here at home. We are on track to push off from here Thu. AM for Claremont and begin this transplant process - again. While we've been waiting and praying for this day to come, now that we are this close, I find mysef a bit more anxious than I thought I would. Tomorrow will be our big day of packing clothes, kids toys, stuff for me to do in the hospital, and cleaning up the house one last time. I've also got to take care of all the address changes, service stoppages for phone, cable, etc. and some other miscellaneous chores around the house.

Continue to pray that all goes smoothly in preparation for the transplant next week. Pray for good weather Thu. for the move down to Claremont, as well as good weather next week, as I'll have to drive back and forth between Claremont and Dartmouth each day, Mon - Wed for chemo, and we don't have the luxury of skipping a day because of bad weather. Thanks for your continued support, love, & prayers.

The longest day

Well, not quite, but yesterday was one of the longest days I've had in a long time. Monday night, I drove myself down to Claremont and spent the night with Lisa's folks. Yesterday, I was up and out the door just after 6am in order to arrive at DHMC by 7am for my PET scan, followed by a full day of appointments with the social worker, surgeon, & Dr Hill, my transplant doctor, as well as a chest Xray and another pulmonary function test to check up on the effectiveness of the surgery. I left the building just before 5pm, stopped for dinner with Lisa's sister, Rachel, and her family in Loudon, and then hit the road again about 7pm, and arrived home here in Waldoboro about 10:30pm, about as tired and exhausted as I remember feeling. I did enjoy some "solo time" in the car, both on the way down and the way home, listening to several sermons and some good music. One of the sermons I listened to was by John Piper, titled Christ and Cancer, and was incredibly encouraging, challenging, and good for my soul. I'd encourage you to listen to it if you find the time, or at least read through the transcript, available through the link above. If you haven't read Piper's article "Don't Waste your Cancer", I'd recommend that to you, as well.

The surgeon was pleased with the healing of the incisions and the results of the Xray and the PFT. Dr. Hill was pleased with the results of the PET scan, although he was a bit confused about a "bright spot" near my belly button, which had never been seen before. As I was reflecting this morning on all of this, I realized that I had left a pen in my sweatshirt pouch pocket - hence the bright spot near my belly button; it was seeing the metal from the pen in my pocket! We are waiting for the "final report" of the PET scan either today or tomorrow, but all looks good and things are a "go" to begin the transplant a week from this coming Monday, on Mon. Feb. 25.

We will move down to Claremont next Thu. Feb. 21, as we've been planning, and I'll complete all the necessary paperwork at DHMC on Fri., then relax over the weekend and begin 3 days of outpatient chemo treatments on Mon. Feb. 25. I'll have the "day off" on Thu. Feb. 28, which is also the day that my donor will have his cells collected, and then I'll be admitted on Fri. Feb. 29 (yes leap day!) and have the donor's cells infused that same day. I'll then remain an inpatient there at DHMC for about 2 weeks or so, hopefully getting discharged sometime during the week before Easter Sunday.

For now, continue to pray with us for:
1) continued good health for all of us, as well as the donor.
2) smooth plans and preparations over the next 10 days or so.
3) safety driving, both next Thu., as well as during the following week as we travel back and forth between Claremont and DHMC for appointments and treatments.