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.
Saturday, August 9, 2008
Tuesday, August 5, 2008
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"!
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"!
Tuesday, July 29, 2008
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.
Friday, July 25, 2008
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.
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.
Monday, July 21, 2008
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.
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.
Tuesday, July 8, 2008
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
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
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