Family visitation
Thursday November 5th
7-8.30 PM
LDS church
4655 Table Mesa Drive
Boulder, CO
Relief Society Room
Funeral
Friday November 6th
11 AM
LDS church (address above)
Burial
Green Mountain Cemetary
290 20th Street Boulder
*In lieu of flowers, please contribute to an IRA education fund for your children or grandchildren, or donate to the LDS Perpetual Education Fund.
Tuesday, November 3, 2009
Monday, November 2, 2009
T. Gordon Lewis 2/26/1941 – 11/2/2009
Today we bid farewell to our loving husband, brother, father, uncle, grandpa, and friend. We will miss you! Your love and example will be with us forever.
The last two weeks have been a tremendous roller coaster. We’ve intended to update the blog, but have struggled to know what message to share. After two weeks of the toughest side effects yet, we found out that Dad’s leukemia was gone. We learned that the doctors were planning for a transplant after a 3-4 week recovery period. Dad left the 24-hour care, recovered from delirium, and his swelling improved dramatically. Those few days were filled with cautious hope, and conversation with dad. It was always refreshing when he asked if the market was up or down.
Last Sunday/Monday, the delirium began to slowly return. The doctors moved him back into the ICU, and we all wondered why he seemed to be regressing. Thursday we learned he had contracted a very serious infection called Fournier Gangrene. By Friday morning the doctors were suggesting only a miracle could stop the spread of the infection. After 3.5 months without white blood cells, 4 rounds of chemo and everything he’d been through, an infection is what we’d feared. After so many visits to the hospital where we’d washed our hands, put on gowns, gloves and masks, we knew infection was our enemy. However, we’d always assumed the Leukemia was a bigger concern.
Sara and Crosby caught a plane out Friday afternoon from New York. Dad was so happy to see Sara. One of his few moments of recognition was when he saw her and turned to Rand and said, “I’m back in my fantasty world” and Rand assured her Sara was really there. Dad’s only sibling, his sister, LaRee Sperry, came out Saturday with her son Michael. Dad recognized her as well, and chuckled with surprise when he saw her face.
We so much appreciate the fasting, prayers, notes, emails, gifts and love from all of you. When Dad’s home ward and high priest group cancelled activities and fasted on Halloween, we felt the love and support of all of you. We hoped, fasted and prayed with you for a miracle. We don’t understand why God’s will wasn’t in line with our will. We have faith in our Heavenly Father and his plan. We trust we will be with Dad again in Paradise and look forward to that reunion.
We’re appreciative of the professionals at Presbyterian/St Luke’s hospital in Denver and the Rocky Mountain Cancer Centers. Despite unbelievable conditions, they always treated us and Gordon with the utmost respect, patience and love.
Leukemia is an insidious disease. Chemo therapy is an amazingly difficult treatment. Such an active man spent more than 120 days in the hospital. Beyond the physical pain, he tired of the food, the routine, the interrupted sleep, lack of privacy and the utter helplessness. Gordon faced these challenges with tremendous courage, strength, patience and good humor. His passing was quiet and peaceful, and he was surrounded by loved ones. Although it was painful to witness, we will forever treasure our time with him. We visited him nearly daily for several months in the hospital. These daily interactions reminded of us his wonderful intellect, love, wisdom and support. As painful as this illness was for him, we will forever treasure our opportunity to spend so much time with him in his last months.
***This post was written by Rand.
Monday, October 19, 2009
10-19-09 Update from Laura
Is it just me or does it seem ironic that a man who sits at the beach in a wind suit, hat, and tennis shoes, has spent his life slathered in SPF 60 sunscreen and gardens in a long-sleeved shirts and jeans is peeling worse than a teen who laid out with Crisco on tinfoil and got burned? They say a picture is worth a thousand words but in this case it is worth 1,000 layers of skin. The photos, though timely for the Halloween season, give some brevity to the week that TGL has endured. Dare I mention Job?
Generally, our experience with induction has been 5-7 days of chemo with the effects of fatigue, fever, mouth sores, etc. hitting 7-10 days later; but, such was not the case with the chemo drug dad received this go around. The docs warned that one of the side effects was "hand, foot syndrome"; however, since the drug affects everyone differently we hoped for the best.
After his first chemo session on Monday 10/5, he experienced nausea and a blood clot in his arm where the pick line was. They moved the line to the right arm and put him on blood thinner to treat the clot. From then things went downhill faster than Thomas the Tank engine without brakes on the Matterhorn. By Thursday 10/8 dad was carrying 25+ lbs of extra fluid and had a rash all over his body. If he tried to stand he lost his balance as his small frame was completely unfamiliar with the extra weight. His hands and feet were so swollen and red that he could barely eat - but being the model patient - he still tried.
Mom called Sunday morning and couldn't get a hold of him. Needless to say, she was upset and headed down to the hospital. She went to his room on the 4th floor and was informed he had been moved to ICU. Sunday - Wednesday dad experienced hallucinations and was disoriented. He doesn't remember anything from Monday afternoon to Wednesday. When I went to visit on Thursday he described a dream which in my opinion was his experience for those scary hours. At the end of the dream after unsuccessfully trying to reach mom and rand on their phones, Rand came and picked him up - THANKS RAND!
He didn't sleep more than an hour between Sunday night and Thursday 10/15 and they did not administer the final chemo in order to stabilize him. He has been on oxygen and has had multiple blood transfusions per day. The hallucinations are gone and now he is completely wiped out. Ordering Dinner seems like major task for him. They wrap his hands and feet 3 times a day and his entire body is peeling. He has huge blisters, [as shown in the picture] and still has a rash all over his legs. Basically, the chemo burned his body from the inside out - NICE!!!
They believe that the combination of the nausea, pain drugs, anti-biotics and chemo caused dad's hallucinations and lack of orientation. The doctor told Rand these types of side effects are “normal” but not at the level dad experienced. Dad has had 24 hour care in the room to keep him safe and the caregivers at the hospital have been very impressive, patient and loving. One of them even trained to be an Olympic speed skater - just a factoid gleaned from Yah Yah who probably peppers the nurses/techs too much with inquiries. We are SO very grateful for the care dad is receiving. Not all angels are in heaven!!!
Generally, our experience with induction has been 5-7 days of chemo with the effects of fatigue, fever, mouth sores, etc. hitting 7-10 days later; but, such was not the case with the chemo drug dad received this go around. The docs warned that one of the side effects was "hand, foot syndrome"; however, since the drug affects everyone differently we hoped for the best.
After his first chemo session on Monday 10/5, he experienced nausea and a blood clot in his arm where the pick line was. They moved the line to the right arm and put him on blood thinner to treat the clot. From then things went downhill faster than Thomas the Tank engine without brakes on the Matterhorn. By Thursday 10/8 dad was carrying 25+ lbs of extra fluid and had a rash all over his body. If he tried to stand he lost his balance as his small frame was completely unfamiliar with the extra weight. His hands and feet were so swollen and red that he could barely eat - but being the model patient - he still tried.
Mom called Sunday morning and couldn't get a hold of him. Needless to say, she was upset and headed down to the hospital. She went to his room on the 4th floor and was informed he had been moved to ICU. Sunday - Wednesday dad experienced hallucinations and was disoriented. He doesn't remember anything from Monday afternoon to Wednesday. When I went to visit on Thursday he described a dream which in my opinion was his experience for those scary hours. At the end of the dream after unsuccessfully trying to reach mom and rand on their phones, Rand came and picked him up - THANKS RAND!
He didn't sleep more than an hour between Sunday night and Thursday 10/15 and they did not administer the final chemo in order to stabilize him. He has been on oxygen and has had multiple blood transfusions per day. The hallucinations are gone and now he is completely wiped out. Ordering Dinner seems like major task for him. They wrap his hands and feet 3 times a day and his entire body is peeling. He has huge blisters, [as shown in the picture] and still has a rash all over his legs. Basically, the chemo burned his body from the inside out - NICE!!!
They believe that the combination of the nausea, pain drugs, anti-biotics and chemo caused dad's hallucinations and lack of orientation. The doctor told Rand these types of side effects are “normal” but not at the level dad experienced. Dad has had 24 hour care in the room to keep him safe and the caregivers at the hospital have been very impressive, patient and loving. One of them even trained to be an Olympic speed skater - just a factoid gleaned from Yah Yah who probably peppers the nurses/techs too much with inquiries. We are SO very grateful for the care dad is receiving. Not all angels are in heaven!!!
Saturday, October 10, 2009
This has been a tough round
Dad is almost done with the chemo, but it has taken a toll. Thus far side affects include:
Head to toe skin rash
Severe bloating - he is carrying about 20 lbs of extra water
Blood clot in his right arm
Exhaustion - he hasn't been out of bed for several days
Constant temperature
Headache
Nausea
He is hanging in there, but it has been rough. Once the chemo is done we wait for him to recover, and wait to see if it worked. Stay tuned.
Head to toe skin rash
Severe bloating - he is carrying about 20 lbs of extra water
Blood clot in his right arm
Exhaustion - he hasn't been out of bed for several days
Constant temperature
Headache
Nausea
He is hanging in there, but it has been rough. Once the chemo is done we wait for him to recover, and wait to see if it worked. Stay tuned.
Friday, October 2, 2009
10-2-09 Update (by Gordon)
We have completed the various tests required to move forward with a bone marrow transplant.
The lung infection seems to have responded to the therapy and is not now deemed to be a problem.
Unfortunately, the bone marrow biopsy did not follow suit. The degree of leukemia cells in my marrow has approximately doubled (13% to 24%) and there are circulating leukemia cells in my bloodstream. These levels do NOT support moving ahead with the transplant plan.
The new plan has me entering the Denver hospital (PSL) on Monday morning for another round of induction. Chemo lasts for about one week and the expected hospital stay is about 4 weeks. A different drug will be used in hopes of finding something that will challenge the drug resistant leukemia. If we can drive the leukemia back into "remission," the transplant is still a possibility.
Have felt weaker and more breathless the last week. Not looking forward to next week but we are committed to play the string out and see what happens.
Thanks for your many cards, pies, website comments, emails, and prayers. I will rely on my daughters to keep the post up to date but there probably won’t be much to report for at least three weeks.
Gordon
The lung infection seems to have responded to the therapy and is not now deemed to be a problem.
Unfortunately, the bone marrow biopsy did not follow suit. The degree of leukemia cells in my marrow has approximately doubled (13% to 24%) and there are circulating leukemia cells in my bloodstream. These levels do NOT support moving ahead with the transplant plan.
The new plan has me entering the Denver hospital (PSL) on Monday morning for another round of induction. Chemo lasts for about one week and the expected hospital stay is about 4 weeks. A different drug will be used in hopes of finding something that will challenge the drug resistant leukemia. If we can drive the leukemia back into "remission," the transplant is still a possibility.
Have felt weaker and more breathless the last week. Not looking forward to next week but we are committed to play the string out and see what happens.
Thanks for your many cards, pies, website comments, emails, and prayers. I will rely on my daughters to keep the post up to date but there probably won’t be much to report for at least three weeks.
Gordon
Sunday, September 27, 2009
Post by Laura (uploaded by Sara)
My sister Sara the other day was rather overwhelmed with being a mom of three, worried about dad, the rash and the spinal tap, and in general not in a good place when she heard a knock at her door. She opened the door and there was a package there with a baseball cap from Georgia and this note inside:
Sara:
Sending love from Georgia! So wish I had been with y'all the other night. I have been thinking about you so very much. I know some of the feelings you may be feeling- there are some things I know for certain the gospel is real and eternal families are freaking real. I know that the lewis family is amazing and together you'll be good and I know you have people in NY that love you so much. So when you wear the GA hat know there is someone in Georgia that REALLY cares.
Love to you.
LeeAnne Pope
Then last week mom and dad got a package in the mail from Washington D.C. and inside were two DVD's about golf and some candy with the following note:
Dear Gordon and Kathleen,
We have been thinking about you a lot lately. We are sorry you must endure this trial but admire the way you are going about it. You are in our prayers and we wish you the best in the coming weeks and months. We hope you will be blessed with strength and peace.
Love,
Brian and Amy Barker [travis' sister who has probably met dad once]
These are just a few of the many Golden Nuggets that the Lewis Family has received in the three longest months of our lives. The following are a few of my personal nuggets:
Tanner, Christian, Scout, Mason, Calder, Sydney, Crosby, and Brig who are hands down the best part of my life.
Weekly deliveries of fresh bread and homemade fruit pies for dad from Sister Rude Jude Maxfield.
Becca Bracy Knight and Pepper Sessions who are two of the funniest most delightful people on the planet. [even if Becca doesn't know what a spatula is]
Jim Strong's shaking shoulders as I sit behind him during Sacrament meeting each Sunday and witness the man of "very few words" giggle at whatever unexpected hilarious thing has happened during the meeting [today it was Millie Martindale saying she wouldn't wish her trials on anyone except maybe Osama Bin Laden]
My ASICS 2050 running shoes that are always willing/able to be laced up go as I pound the streets of Btown "running out" my stress, fears, and frustrations.
Travis Stratford for not only working long hours to provide a living so that Sara can stay home and be supermom but who is alone in NY as his family stays for weeks in Colorado. [I think a move is in order!]
Rhonda and Meg Hansen for bringing homemade goodies, teaching me about politics, knowing the primary songs [when I don't] and emailing me the opportunity to sign the declaration of independence.
Chris Martin and the music of COLDPLAY.
Bishop Dietz, dad's home teacher, who is always right behind me asking how dad is and how he can help.
Charles Langston for taking the time to gather "golf" reading for dad.
Comcast for making available every sporting event for TGL's viewing pleasure.
TGL himself who lies there hour after hour, visits doctor after doctor, swallows pill and pill and NEVER utters a word of complaint or frustration.
My Savior Jesus Christ who tolerates my constant mistakes, questions, and complaints and supports me and the family more than I know.
So this post is an official shout out to all of YOU who through your words, prayers, notes, thoughts, and acts make our days and lives better. WE love you.
Sara:
Sending love from Georgia! So wish I had been with y'all the other night. I have been thinking about you so very much. I know some of the feelings you may be feeling- there are some things I know for certain the gospel is real and eternal families are freaking real. I know that the lewis family is amazing and together you'll be good and I know you have people in NY that love you so much. So when you wear the GA hat know there is someone in Georgia that REALLY cares.
Love to you.
LeeAnne Pope
Then last week mom and dad got a package in the mail from Washington D.C. and inside were two DVD's about golf and some candy with the following note:
Dear Gordon and Kathleen,
We have been thinking about you a lot lately. We are sorry you must endure this trial but admire the way you are going about it. You are in our prayers and we wish you the best in the coming weeks and months. We hope you will be blessed with strength and peace.
Love,
Brian and Amy Barker [travis' sister who has probably met dad once]
These are just a few of the many Golden Nuggets that the Lewis Family has received in the three longest months of our lives. The following are a few of my personal nuggets:
Tanner, Christian, Scout, Mason, Calder, Sydney, Crosby, and Brig who are hands down the best part of my life.
Weekly deliveries of fresh bread and homemade fruit pies for dad from Sister Rude Jude Maxfield.
Becca Bracy Knight and Pepper Sessions who are two of the funniest most delightful people on the planet. [even if Becca doesn't know what a spatula is]
Jim Strong's shaking shoulders as I sit behind him during Sacrament meeting each Sunday and witness the man of "very few words" giggle at whatever unexpected hilarious thing has happened during the meeting [today it was Millie Martindale saying she wouldn't wish her trials on anyone except maybe Osama Bin Laden]
My ASICS 2050 running shoes that are always willing/able to be laced up go as I pound the streets of Btown "running out" my stress, fears, and frustrations.
Travis Stratford for not only working long hours to provide a living so that Sara can stay home and be supermom but who is alone in NY as his family stays for weeks in Colorado. [I think a move is in order!]
Rhonda and Meg Hansen for bringing homemade goodies, teaching me about politics, knowing the primary songs [when I don't] and emailing me the opportunity to sign the declaration of independence.
Chris Martin and the music of COLDPLAY.
Bishop Dietz, dad's home teacher, who is always right behind me asking how dad is and how he can help.
Charles Langston for taking the time to gather "golf" reading for dad.
Comcast for making available every sporting event for TGL's viewing pleasure.
TGL himself who lies there hour after hour, visits doctor after doctor, swallows pill and pill and NEVER utters a word of complaint or frustration.
My Savior Jesus Christ who tolerates my constant mistakes, questions, and complaints and supports me and the family more than I know.
So this post is an official shout out to all of YOU who through your words, prayers, notes, thoughts, and acts make our days and lives better. WE love you.
Monday, September 21, 2009
September 21, 2009 Update
I am past due on my promised update. That is because I keep waiting for something significant to occur that I could definitively report. Today is the day!
Last week I completed a second round of 5 days of chemo to suppress the leukemia. Not feeling so great today, kind of weak and shaky. I also have developed some skin rashes.
Since my last report we have completed two additional CT scans to monitor the infection in my lungs. The first, two weeks ago, seemed to show a slight worsening of the spots. The second, last Thursday, showed "improvement" (no one has quantified that for me) but I guess it doesn't matter as the doc said he was "pleased" with the progress..
Today we met with the transplant doc and we have a new plan. Transplant is scheduled for 10/15. I would enter the hospital on 10/9 and receive four days of preparatory chemo. I am really looking forward to that. This plan is contingent on passing some additional milestones.
The next CT scan of the lungs is 10/1 and the progress noted above must continue.
I will also have another bone marrow biopsy, probably on 9/28. I'm not so clear on what the "passing grade" here is to be. In addition I must have a spinal tap to look for leukemia in my central nervous system.
And, just to keep things interesting, I have noticed some skin rashes and itching the past few days and that needs to be evaluated by a dermatologist.
We continue to do well. Still need to walk more to build up my strength for the ordeal. Kathleen and I appreciate your thoughts, cards, prayers, and blog comments. You are a great support.
The final meeting with the transplant doctor is 10/5. We will try to update things shortly after that.
Gordon
Last week I completed a second round of 5 days of chemo to suppress the leukemia. Not feeling so great today, kind of weak and shaky. I also have developed some skin rashes.
Since my last report we have completed two additional CT scans to monitor the infection in my lungs. The first, two weeks ago, seemed to show a slight worsening of the spots. The second, last Thursday, showed "improvement" (no one has quantified that for me) but I guess it doesn't matter as the doc said he was "pleased" with the progress..
Today we met with the transplant doc and we have a new plan. Transplant is scheduled for 10/15. I would enter the hospital on 10/9 and receive four days of preparatory chemo. I am really looking forward to that. This plan is contingent on passing some additional milestones.
The next CT scan of the lungs is 10/1 and the progress noted above must continue.
I will also have another bone marrow biopsy, probably on 9/28. I'm not so clear on what the "passing grade" here is to be. In addition I must have a spinal tap to look for leukemia in my central nervous system.
And, just to keep things interesting, I have noticed some skin rashes and itching the past few days and that needs to be evaluated by a dermatologist.
We continue to do well. Still need to walk more to build up my strength for the ordeal. Kathleen and I appreciate your thoughts, cards, prayers, and blog comments. You are a great support.
The final meeting with the transplant doctor is 10/5. We will try to update things shortly after that.
Gordon
Saturday, August 29, 2009
Update from Gordon
It is time for an update. One of the cancer center workers told me that "treating leukemia is a chaotic and unpredictable process." My experience confirms that opinion. We have been unable to make a plan and then execute it. Rather, it seems like everything is a reaction. You can imagine how much I like that!
I am still at home and feeling tolerably well. Have little energy, feel weak, but have a good appetite and can walk for 20 minutes or so. Our lives consist of home and doctor's offices and hospitals. This week it has been 4 days out of five with 3 trips to Denver. Kathleen is my cook, errand runner, and chauffeur. She is doing well, totally committed to this process but feeling a bit tired. Still require isolation for fear of infection (i.e. already we have Swine flu at CU). My body does not create enough blood cells on its own for me to be healthy, even almost 8 weeks after the major chemo. White count (infection fighters) is about 30% of the low end of the normal range. Red count is supplemented by blood transfusions, had 2 units yesterday at the hospital. The reason for this failure is not totally evident but probably due to the continuing leukemia.
Last week I completed five days of "chemo" in Boulder aimed at suppressing the L. until the lung infection can be treated. It wiped me out some but not too badly. Tuesday I had a bronchoscopy (examination of my lungs from the inside). Because of the location of the "spot" (very top of one lung) the scope could neither see nor biopsy the area. Instead, they wash it with saline, gather it up, and then grow cultures to see if anything can be identified. Total results take up to 8 weeks! You may well ask "what good is this test?"
We will do a repeat CT scan of the chest next Wednesday hoping for a reduction in size of the spot. My next meeting with the transplant doc is 9/12 with the Boulder doc watching over me in the interim. Don’t expect any real updates until after 9/12.
Thanks for you support and your prayers. Just below this post are some instructions which simplify the "commenting" process. We love to hear from you.
Gordon
I am still at home and feeling tolerably well. Have little energy, feel weak, but have a good appetite and can walk for 20 minutes or so. Our lives consist of home and doctor's offices and hospitals. This week it has been 4 days out of five with 3 trips to Denver. Kathleen is my cook, errand runner, and chauffeur. She is doing well, totally committed to this process but feeling a bit tired. Still require isolation for fear of infection (i.e. already we have Swine flu at CU). My body does not create enough blood cells on its own for me to be healthy, even almost 8 weeks after the major chemo. White count (infection fighters) is about 30% of the low end of the normal range. Red count is supplemented by blood transfusions, had 2 units yesterday at the hospital. The reason for this failure is not totally evident but probably due to the continuing leukemia.
Last week I completed five days of "chemo" in Boulder aimed at suppressing the L. until the lung infection can be treated. It wiped me out some but not too badly. Tuesday I had a bronchoscopy (examination of my lungs from the inside). Because of the location of the "spot" (very top of one lung) the scope could neither see nor biopsy the area. Instead, they wash it with saline, gather it up, and then grow cultures to see if anything can be identified. Total results take up to 8 weeks! You may well ask "what good is this test?"
We will do a repeat CT scan of the chest next Wednesday hoping for a reduction in size of the spot. My next meeting with the transplant doc is 9/12 with the Boulder doc watching over me in the interim. Don’t expect any real updates until after 9/12.
Thanks for you support and your prayers. Just below this post are some instructions which simplify the "commenting" process. We love to hear from you.
Gordon
Saturday, August 15, 2009
Instructions: How to Post a Comment
To Post A Comment:
Click on "Comments" at the bottom of the post
Under "Leave your Comment" write your comment and sign your name
Under "Choose an identity" select the circle next to "Anonymous"
Click "Publish your comment"
Click on "Comments" at the bottom of the post
Under "Leave your Comment" write your comment and sign your name
Under "Choose an identity" select the circle next to "Anonymous"
Click "Publish your comment"
From Gordon
15 August 2009
Dear Friends (written by Gordon)
As of Saturday I am feeling fairly well, no energy, but OK to tackle this note. We have been going to Denver 3 times per week (5 times last week) so it is great to have a day without doctors. They are a wonderful resource but each trip takes its toll.
On 8/11 I underwent many tests at the hospital in preparation for an end of August bone marrow transplant. All except one test came out great. Just yesterday we found that unfortunately a CAT scan showed a spot on my lung which is almost certainly a fungal infection. Tests are underway to identify the culprit so we can best treat it. Given my low white counts it is very unlikely that it can be cured right now so the goal is to either contain or shrink it. It must be treated for at least four weeks.
Because of the infection, the transplant has been postponed for 5-6 weeks. Given that there is still leukemia active in my marrow, we are planning on 5 days of outpatient chemo, hopefully in Boulder, to try and inhibit the leukemia while we fight the infection.
Obviously this is a major setback in the overall game plan. I will spare you the gruesome numbers but it will be a horse race to see if I can still qualify for a transplant. Infection must be controlled and leukemia cells must be within the limits.
My situation looks a bit tenuous but we are forging on. I am so grateful for my almost idyllic life. I am so blessed with friends, neighbors, business associates and a wonderful family. I can’t imagine how people without such support face such issues as now confronts us.
We appreciate your prayers, emails, cards, good thoughts and we will try and keep you posted on what is going on at least weekly.
I have asked Carrie to add something to the blog to explain how to make comments. Some have mentioned trouble in doing that.
Dear Friends (written by Gordon)
As of Saturday I am feeling fairly well, no energy, but OK to tackle this note. We have been going to Denver 3 times per week (5 times last week) so it is great to have a day without doctors. They are a wonderful resource but each trip takes its toll.
On 8/11 I underwent many tests at the hospital in preparation for an end of August bone marrow transplant. All except one test came out great. Just yesterday we found that unfortunately a CAT scan showed a spot on my lung which is almost certainly a fungal infection. Tests are underway to identify the culprit so we can best treat it. Given my low white counts it is very unlikely that it can be cured right now so the goal is to either contain or shrink it. It must be treated for at least four weeks.
Because of the infection, the transplant has been postponed for 5-6 weeks. Given that there is still leukemia active in my marrow, we are planning on 5 days of outpatient chemo, hopefully in Boulder, to try and inhibit the leukemia while we fight the infection.
Obviously this is a major setback in the overall game plan. I will spare you the gruesome numbers but it will be a horse race to see if I can still qualify for a transplant. Infection must be controlled and leukemia cells must be within the limits.
My situation looks a bit tenuous but we are forging on. I am so grateful for my almost idyllic life. I am so blessed with friends, neighbors, business associates and a wonderful family. I can’t imagine how people without such support face such issues as now confronts us.
We appreciate your prayers, emails, cards, good thoughts and we will try and keep you posted on what is going on at least weekly.
I have asked Carrie to add something to the blog to explain how to make comments. Some have mentioned trouble in doing that.
Monday, August 10, 2009
Plans for the BMT
Since dad has left the hospital, my parents have driven to Denver every Monday, Wednesday and Friday for blood tests, blood transfusions, etc. These appointments take a minimum of 4 hours and can last all day. In addition to the regular M, W, F appointments this week - dad is scheduled for a series of pre-BMT tests beginning on Tuesday, 8/11. Since dad is still recovering from induction and does not have his energy all back, these Denver visits are exhausting.
Dad's blood counts are still not going up so he is still at risk for infection. As a result my mom takes great care to plan for and prepare 3 meals a day that are healthy, soft to chew/swallow (for his mouth sores), and safe. She has probably gone to the grocery store more times in the past month that she has in the past 5 years! (My dad is the regular grocery shopper.)
The doctors have a donor lined up for dad and there is a tentative transplant date of 8/27. On 8/21 dad goes into the hospital to "prep" for the transplant with chemo and radiation. There are three levels of prep for the transplant: young people, mid range, and mini (for older people). Because dad's disease is not in a full remission, he will have to endure the mid range of chemo/radiation.
Sara is out from NYC with the kids to see everyone, especially grandpa. It is always good to be together as a family.
Dad's blood counts are still not going up so he is still at risk for infection. As a result my mom takes great care to plan for and prepare 3 meals a day that are healthy, soft to chew/swallow (for his mouth sores), and safe. She has probably gone to the grocery store more times in the past month that she has in the past 5 years! (My dad is the regular grocery shopper.)
The doctors have a donor lined up for dad and there is a tentative transplant date of 8/27. On 8/21 dad goes into the hospital to "prep" for the transplant with chemo and radiation. There are three levels of prep for the transplant: young people, mid range, and mini (for older people). Because dad's disease is not in a full remission, he will have to endure the mid range of chemo/radiation.
Sara is out from NYC with the kids to see everyone, especially grandpa. It is always good to be together as a family.
Thursday, August 6, 2009
Moving on to transplant!
After more time has passed the doctors think dad can move right to a bone marrow transplant! Here is an email he sent his children on Thursday 8/6.
Kids:
A long day. Left at 8:40am and returned about 5:30pm after two units of blood at PSL.
Talked to Dr. Maris. Current plan is to try and "fast track" a transplant. They are working on a donor and all the logistics. Could be in as little as three weeks. Back into the hospital for me in about two weeks assuming that I can maintain the status quo. Chances of a 5 year survival are 20-30%. I did not ask what the chances were of surviving the transplant. If we do nothing more, 100% chance of death. He did say that it may take 3-6 months which was longer than I had expected. Maybe I should have just played golf for another month?
He explained a bit about the marrow results. Apparently the "cellularity," a term I don't quite understand but I think that it means the normal cells in the marrow, had increased relative to the leukemia cells, therefore the relative blast count was better. Mouth sores look much improved.
Blood counts were discouraging. White blood count down to 700 from 900. No improvement in neutrophils. Red and platelets about even. My poor marrow has just had too much chemo (my opinion). He gave me a shot of neupogen to try and stimulate cell growth. He said that it does not tend to affect the leukemia much.
Felt really weak and lightheaded starting yesterday. Apparently my blood pressure drops when I sit or stand up which is sign of "lack of hydration" in the vascular system. Apparently this can happen even if I am drinking sufficiently. Told to increase the Gatorade and may have to go to IVs of water at the visits.
Still not feeling any positive effects from the blood. There is always tomorrow!
Dad
Kids:
A long day. Left at 8:40am and returned about 5:30pm after two units of blood at PSL.
Talked to Dr. Maris. Current plan is to try and "fast track" a transplant. They are working on a donor and all the logistics. Could be in as little as three weeks. Back into the hospital for me in about two weeks assuming that I can maintain the status quo. Chances of a 5 year survival are 20-30%. I did not ask what the chances were of surviving the transplant. If we do nothing more, 100% chance of death. He did say that it may take 3-6 months which was longer than I had expected. Maybe I should have just played golf for another month?
He explained a bit about the marrow results. Apparently the "cellularity," a term I don't quite understand but I think that it means the normal cells in the marrow, had increased relative to the leukemia cells, therefore the relative blast count was better. Mouth sores look much improved.
Blood counts were discouraging. White blood count down to 700 from 900. No improvement in neutrophils. Red and platelets about even. My poor marrow has just had too much chemo (my opinion). He gave me a shot of neupogen to try and stimulate cell growth. He said that it does not tend to affect the leukemia much.
Felt really weak and lightheaded starting yesterday. Apparently my blood pressure drops when I sit or stand up which is sign of "lack of hydration" in the vascular system. Apparently this can happen even if I am drinking sufficiently. Told to increase the Gatorade and may have to go to IVs of water at the visits.
Still not feeling any positive effects from the blood. There is always tomorrow!
Dad
Monday, July 27, 2009
Week ONEderful now on to Week TWOmuch fun...
Dad is finishing up week 1 of recovery at home. He still has very low energy and can't shake the mouth sores. According to the doctors, until the white blood cells come back, the body can't fight the virus which is causing the sores so as with everything else, all depends on the white blood cells. His platelettes, "clotting cells", have started to increase. He makes the trek to Denver to the hospital every other day and the trip generally takes at least 5 hours. I guess he and mom have redefined the "perfect date" [for masochists that is].
Monday he was dehydrated so they kept him for a couple of hours to pump fluids. Much to everyone's chagrin he has lost 5 pounds in a week so now he has mandatory milk shakes before going to bed. Who knows, maybe leukemia will be the next fad diet - I wouldn't be surprised.
Mom has been to the grocery store and spent hours shopping for and preparing recipes that are soft enough for dad to chew but calorically dense and nutritious. She is adament that he not eat anything prepared by someone else as she doesn't want to risk anything that could cause infection. As mom says " you know i must really love you if i am willing to go to the store so many times in a week".
Thursday he came out and announced the he was "going....... downstairs to watch some golf". At first I thought he said he was going to play some golf and was quite taken aback. Saturday was Brig's first birthday and the party was in Denver. Rand, who has awoken at 4:45 am to successfully navigate a 75 mile/6 hour bikeride, came over and stayed with Dad while we went to the party. Who knows, maybe they just napped together, but it was again a testimony of the selflessness of Rand.
So all in all we don't have much to report. The plan, which seems to change with each new doctor we talk to, is to wait until Dad is strong enough to begin induction/chemo again. Of course if we get our miracle he could go straight to the bone marrow transplant.
Thanks again for all of the prayers/emails/homemade bread and offers to help. We couldn't do this without our friends and family.
Monday he was dehydrated so they kept him for a couple of hours to pump fluids. Much to everyone's chagrin he has lost 5 pounds in a week so now he has mandatory milk shakes before going to bed. Who knows, maybe leukemia will be the next fad diet - I wouldn't be surprised.
Mom has been to the grocery store and spent hours shopping for and preparing recipes that are soft enough for dad to chew but calorically dense and nutritious. She is adament that he not eat anything prepared by someone else as she doesn't want to risk anything that could cause infection. As mom says " you know i must really love you if i am willing to go to the store so many times in a week".
Thursday he came out and announced the he was "going....... downstairs to watch some golf". At first I thought he said he was going to play some golf and was quite taken aback. Saturday was Brig's first birthday and the party was in Denver. Rand, who has awoken at 4:45 am to successfully navigate a 75 mile/6 hour bikeride, came over and stayed with Dad while we went to the party. Who knows, maybe they just napped together, but it was again a testimony of the selflessness of Rand.
So all in all we don't have much to report. The plan, which seems to change with each new doctor we talk to, is to wait until Dad is strong enough to begin induction/chemo again. Of course if we get our miracle he could go straight to the bone marrow transplant.
Thanks again for all of the prayers/emails/homemade bread and offers to help. We couldn't do this without our friends and family.
Sunday, July 19, 2009
Not done yet...
The 2nd bone marrow test showed that the percentage of leukemia cells in dad's body has stayed about the same and has actually gone up a little bit (8% to 9%). As a result, dad is not yet eligible for the bone marrow transplant. In a week dad's ailments have eased up quite a bit. His mouth sores are healing and he is sleeping better at night. However, his body is not yet strong enough for a 2nd round of chemo. The Dr. suggested dad go home for a few weeks to give his body time to heal and give him a break from the hospital. Then in 2-3 weeks he will return to the hospital for "re-induction" (a 2nd round of chemo).
Dad still has virtually no immune system and can not have any non-family visitors in the house. We are excited he will be able to see the grand kids (even if it is from afar) as children under the age of 18 were not permitted in the hospital. Also perhaps mom and dad can now celebrate their 45th wedding anniversary with style! Their anniversary fell in the middle of round 1 of chemo (similar to their 43rd wedding anniversary). Congrats mom and dad - we love you both so much!
Dad still has virtually no immune system and can not have any non-family visitors in the house. We are excited he will be able to see the grand kids (even if it is from afar) as children under the age of 18 were not permitted in the hospital. Also perhaps mom and dad can now celebrate their 45th wedding anniversary with style! Their anniversary fell in the middle of round 1 of chemo (similar to their 43rd wedding anniversary). Congrats mom and dad - we love you both so much!
Monday, July 13, 2009
Induction
Dad has been in the hospital 22 days. The first 2 days he was getting checked in. The next 5 days he received chemotherapy. The last 15 days we have been waiting to see if the chemo has worked, and have watched him feel the affects of the chemo.
Thus far side affects include:
-extensive mouth and throat sores (similar to strep). So far this has been the worst part and is preventing dad from eating and talking much
-constant headaches
-shakes
-occasional temperature (not as bad as last time)
-lack of energy / weak
-infection in his leg they believe might be a fungus
-water retention
-hair loss
-insomnia (compounded by the fact the nurses have to check his vitals at midnight and 4am each night)
-and a host of other daily changing ailments
Luckily after 4 incidents, the fainting seems to have stopped (and with it, the bruises all over his poor body). Hallelujah!
July 8th the Dr. gave dad a bone marrow test to asses the effectiveness of the chemotherapy. July 9th we found out that while the chemo appears to be working, it hasn't killed enough leukemia cells to make dad eligible for a bone marrow transplant. When dad went into the hospital 30-40% of his cells were infected with leukemia. The marrow test showed the chemo has reduced this number to 8%. While the Drs. think this is an excellent/remarkable response to the chemo (there was a chance the leukemia would have completely resisted the chemo and gained strength), we must hit 5% or below to be considered "in remission." This left dad with a choice to make:
1. Do nothing for a week. The chemo may still be killing the leukemia cells. A new bone marrow test in 7 days may show the number has dropped below 5%.
2. Get blasted with another round of chemo immediately to try and kill off the remaining 8%.
Given that his body is still in midst of feeling the affects of the chemo, getting hit with another round would make his side affects much worse since his body hasn't had time to heal. Also, it would take 2-3 weeks longer to recover. The Dr. also said that the bone marrow test was given 1 week earlier than normal since this is a "medical study." So there is the chance his leukemia count will continue to drop with no new chemo.
So, we decided to wait and pray (please join us!) that the first round of chemo is still killing the leukemia cells and in a week his % will drop below 5%. If in a week his percentage has stayed the same or increased he will have to go through "re-induction," or get blasted with a 2nd round of chemo.
So we are back to the waiting game which seems to be a never ending theme.
Dad has started listening to books on CD which provides a nice diversion. He also has at least 2 family visitors per day whether he wants them or not. :) However, visitors are limited to immediate family only given he has no immune system and a cold or infection could be lethal.
Thanks for all the emails, letters, cards, blog comments, fasting, and prayers. We feel your concern and love and gain strength from it.
Thus far side affects include:
-extensive mouth and throat sores (similar to strep). So far this has been the worst part and is preventing dad from eating and talking much
-constant headaches
-shakes
-occasional temperature (not as bad as last time)
-lack of energy / weak
-infection in his leg they believe might be a fungus
-water retention
-hair loss
-insomnia (compounded by the fact the nurses have to check his vitals at midnight and 4am each night)
-and a host of other daily changing ailments
Luckily after 4 incidents, the fainting seems to have stopped (and with it, the bruises all over his poor body). Hallelujah!
July 8th the Dr. gave dad a bone marrow test to asses the effectiveness of the chemotherapy. July 9th we found out that while the chemo appears to be working, it hasn't killed enough leukemia cells to make dad eligible for a bone marrow transplant. When dad went into the hospital 30-40% of his cells were infected with leukemia. The marrow test showed the chemo has reduced this number to 8%. While the Drs. think this is an excellent/remarkable response to the chemo (there was a chance the leukemia would have completely resisted the chemo and gained strength), we must hit 5% or below to be considered "in remission." This left dad with a choice to make:
1. Do nothing for a week. The chemo may still be killing the leukemia cells. A new bone marrow test in 7 days may show the number has dropped below 5%.
2. Get blasted with another round of chemo immediately to try and kill off the remaining 8%.
Given that his body is still in midst of feeling the affects of the chemo, getting hit with another round would make his side affects much worse since his body hasn't had time to heal. Also, it would take 2-3 weeks longer to recover. The Dr. also said that the bone marrow test was given 1 week earlier than normal since this is a "medical study." So there is the chance his leukemia count will continue to drop with no new chemo.
So, we decided to wait and pray (please join us!) that the first round of chemo is still killing the leukemia cells and in a week his % will drop below 5%. If in a week his percentage has stayed the same or increased he will have to go through "re-induction," or get blasted with a 2nd round of chemo.
So we are back to the waiting game which seems to be a never ending theme.
Dad has started listening to books on CD which provides a nice diversion. He also has at least 2 family visitors per day whether he wants them or not. :) However, visitors are limited to immediate family only given he has no immune system and a cold or infection could be lethal.
Thanks for all the emails, letters, cards, blog comments, fasting, and prayers. We feel your concern and love and gain strength from it.
Sunday, July 5, 2009
Week 2 of ????
Well the good news is, and I am being very liberal with the definition of "good", TGL survived another week, but not without a bit of drama. The phrase "not for the faint of heart" has a new meaning for the Lewis family.
Dad finished chemo a week ago Saturday and has been "hanging out" waiting for his white and red blood cells to hit rock bottom. Not exactly what one waits with baited breath for or puts on a Xmas list. The nausea has continued but generally just in the mornings until he can get some food in his system.
The following string of emails explains what happened:
Jul 1, 2009, at 10:44 am, Lewis, Carrie (Carrie) wrote:
Dad just called. He blacked out and fell down twice again this morning. Turns out when he stands up his blood pressure drops and then he blacks out. They are moving him to a new room so they can monitor his heart more closely. His new room number is 3307. He doesn’t know what his new phone number will be yet.
Wed Jul 01 12:06 2009 Sara wrote:
I just read this. Is someone there now? Why is this happening? Is it the chemo, or the leukemia, or something else. Has he seen the dr. today?
Jul 1, 2009 at 12:15 pm Rand wrote:
I'm here. They don't know why. He saw Dr today. They believe it is because he is "dehydrated". It isn't really dehydration, but when the body has cancer and is exposed to chemo the tissues/vessels lose their ability to hold/absorb/retain water. This could cause fainting. They have moved him to watch his heart for 24 hours. He is wired to sensors. They noticed his BP dropped when he stands compared to laying/sitting. He feels OK and wasn't hurt on the falls. They won't let him get out of bed w/o a nurse. His neurtophils are at zero and the counts are falling. I assume he'll have a fever before long. This means the chemo is working to wipe out the marrow.
He apologized to me that his timing will mess up our vacation. Always thinking of others.
They monitored his heart for 24 hours and then he moved back up to his original digs. Despite his total lack of appetite; he still orders and eats each meal. Thursday night I was there for dinner. He ordered 1/2 egg salad sandwich on whole wheat bread, sides of mac 'n cheese and fried potatoes, a strawberry ENSURE and a chocolate chip cookie (which was for me). He ate the sandwich, took a few bites of the sides and then opened the ENSURE. He said mattera factly "this wasn't what I ordered" since the ENSURE was chocolate. Then I mentioned "and the sandwich was on white instead of whole wheat". He hadn't noticed or complained.
In other news
· Dave figured out that through his laptop he can access TGL's home cable from anywhere. His only concern is changing the channel while TGL is watching another.
· Crosby had a physical and is in the 80th percentile for height. We couldn't be prouder.
· Thursday night after dinner, Carrie put on the Lion King soundtrack and Brig, somewhat awestruck, witnessed Kathleen, yah yah, carrie and dave dance around like 14 year olds at their first Stake Dance. [michael jackson eat your heart out].
· TGL is now sporting not one but THREE different styles of pj bottoms.
Again, THANK YOU all so much for your prayers, emails, "blog comments" and friendship.
Dad finished chemo a week ago Saturday and has been "hanging out" waiting for his white and red blood cells to hit rock bottom. Not exactly what one waits with baited breath for or puts on a Xmas list. The nausea has continued but generally just in the mornings until he can get some food in his system.
The following string of emails explains what happened:
Jul 1, 2009, at 10:44 am, Lewis, Carrie (Carrie) wrote:
Dad just called. He blacked out and fell down twice again this morning. Turns out when he stands up his blood pressure drops and then he blacks out. They are moving him to a new room so they can monitor his heart more closely. His new room number is 3307. He doesn’t know what his new phone number will be yet.
Wed Jul 01 12:06 2009 Sara wrote:
I just read this. Is someone there now? Why is this happening? Is it the chemo, or the leukemia, or something else. Has he seen the dr. today?
Jul 1, 2009 at 12:15 pm Rand wrote:
I'm here. They don't know why. He saw Dr today. They believe it is because he is "dehydrated". It isn't really dehydration, but when the body has cancer and is exposed to chemo the tissues/vessels lose their ability to hold/absorb/retain water. This could cause fainting. They have moved him to watch his heart for 24 hours. He is wired to sensors. They noticed his BP dropped when he stands compared to laying/sitting. He feels OK and wasn't hurt on the falls. They won't let him get out of bed w/o a nurse. His neurtophils are at zero and the counts are falling. I assume he'll have a fever before long. This means the chemo is working to wipe out the marrow.
He apologized to me that his timing will mess up our vacation. Always thinking of others.
They monitored his heart for 24 hours and then he moved back up to his original digs. Despite his total lack of appetite; he still orders and eats each meal. Thursday night I was there for dinner. He ordered 1/2 egg salad sandwich on whole wheat bread, sides of mac 'n cheese and fried potatoes, a strawberry ENSURE and a chocolate chip cookie (which was for me). He ate the sandwich, took a few bites of the sides and then opened the ENSURE. He said mattera factly "this wasn't what I ordered" since the ENSURE was chocolate. Then I mentioned "and the sandwich was on white instead of whole wheat". He hadn't noticed or complained.
In other news
· Dave figured out that through his laptop he can access TGL's home cable from anywhere. His only concern is changing the channel while TGL is watching another.
· Crosby had a physical and is in the 80th percentile for height. We couldn't be prouder.
· Thursday night after dinner, Carrie put on the Lion King soundtrack and Brig, somewhat awestruck, witnessed Kathleen, yah yah, carrie and dave dance around like 14 year olds at their first Stake Dance. [michael jackson eat your heart out].
· TGL is now sporting not one but THREE different styles of pj bottoms.
Again, THANK YOU all so much for your prayers, emails, "blog comments" and friendship.
Monday, June 29, 2009
Chemo: the agony and the..."not so" ecstacy
I spent some quality time with TGL yesterday. He has finished the chemo and is laying low, both mentally and physically. We should have knocked on wood when we bragged about how he never got nauseous or threw up with the first round of chemo. Such is not the case with round II.
Things all started with a bang last Tuesday when he fainted in the bathroom at 2am and woke up with his "chemo caddy" on top of him. He had cuts and bruises that we are still finding as we massage him each day. Of course he was a trooper and didn't want to bother the nurses - you know because that isn't their job or anything.
Then Sunday morning he fainted again and was very nauseous. When I got to the hospital he had a STAR on his door - I thought it meant he had been awarded "best AML patient of the year" but he informed me it meant he was on "faint alert". Anytime he wanted/needed to go to the bathroom he had to call the nurse. Poor guy threw up twice, once while I was there. He came out of the bathroom and said to Dave and I "well that was fairly embarrassing". He called the nurse for cleanup on aisle Lewis and apologized profusely for the mess. Such a sweet and undemanding soul.
The family, as usual, is amazing in every way as each person, Sara while here, does all they can to help him. I'm not sure how I got such great siblings but I'll ride on their shirt tails any day. Rand has spent hundreds of dollars on equipment in order to somehow get HD access via laptop so that dad can watch the golf channel while there. Mom goes down each day and then Carrie comes and hands Brig off [no kids under 5 are allowed]. Mom walks with Brig around the relatively seedy neighborhood while Carrie goes up to be with Dad. Sara did the same with OZ when she was here and calls each day.
We all think of him constantly and feel your love.
Things all started with a bang last Tuesday when he fainted in the bathroom at 2am and woke up with his "chemo caddy" on top of him. He had cuts and bruises that we are still finding as we massage him each day. Of course he was a trooper and didn't want to bother the nurses - you know because that isn't their job or anything.
Then Sunday morning he fainted again and was very nauseous. When I got to the hospital he had a STAR on his door - I thought it meant he had been awarded "best AML patient of the year" but he informed me it meant he was on "faint alert". Anytime he wanted/needed to go to the bathroom he had to call the nurse. Poor guy threw up twice, once while I was there. He came out of the bathroom and said to Dave and I "well that was fairly embarrassing". He called the nurse for cleanup on aisle Lewis and apologized profusely for the mess. Such a sweet and undemanding soul.
The family, as usual, is amazing in every way as each person, Sara while here, does all they can to help him. I'm not sure how I got such great siblings but I'll ride on their shirt tails any day. Rand has spent hundreds of dollars on equipment in order to somehow get HD access via laptop so that dad can watch the golf channel while there. Mom goes down each day and then Carrie comes and hands Brig off [no kids under 5 are allowed]. Mom walks with Brig around the relatively seedy neighborhood while Carrie goes up to be with Dad. Sara did the same with OZ when she was here and calls each day.
We all think of him constantly and feel your love.
Saturday, June 27, 2009
June 18th email to family from TGL
Family:
Today we met with Dr. Busby and reviewed the results of last week's bone marrow biopsy. The diagnosis is that the leukemia (AML) has returned. We spent most of the time discussing various options to proceed. The summary is as follows:
1. Do nothing. Could basically provide support via antibiotics and blood transfusions transitioning to hospice. Time to conclusion probably measured in weeks.
2. Try to put the AML back into remission and if successful, do an allogenic bone marrow transplant. There are about four drugs to use but we are opting for a new drug which is in a trial at Rocky Mtn Cancer Centers in Denver. The drug is Voreloxin combined with Cytarabine. It has shown ability to achieve remission in 30-40% of cases. If successful, then an allogenic bone marrow transplant may be an option. Without the transplant, the AML would likely return in a matter of months. Since this drug is part of a trial, it can only be administered at Presbyterian St. Luke's hospital in Denver.
Current plan is to enter the hospital on Monday. This lets me play golf on Friday! Dr. Busby has not used this drug but says that he thinks that I would be in the hospital for 7 to 10 days while the drug is administered and then be outpatient during a recovery that would be more like the earlier consolidation experience rather than induction (which was 38 days in the hospital).
Not to overwhelm you with numbers but if complete remission is achieved, then the five year survival rate following an allogenic BMT is in the 40-50% range.
I am beginning to be more public with the situation so there is no particular need to keep this information within our little clan.
I'm sure that you have further questions, as do I, but there won't be any more answers until next week. Kathleen is doing her best but I think that the "do nothing" scenario from above really hit her hard today so she can use your support.
Dad (Gordon)
Today we met with Dr. Busby and reviewed the results of last week's bone marrow biopsy. The diagnosis is that the leukemia (AML) has returned. We spent most of the time discussing various options to proceed. The summary is as follows:
1. Do nothing. Could basically provide support via antibiotics and blood transfusions transitioning to hospice. Time to conclusion probably measured in weeks.
2. Try to put the AML back into remission and if successful, do an allogenic bone marrow transplant. There are about four drugs to use but we are opting for a new drug which is in a trial at Rocky Mtn Cancer Centers in Denver. The drug is Voreloxin combined with Cytarabine. It has shown ability to achieve remission in 30-40% of cases. If successful, then an allogenic bone marrow transplant may be an option. Without the transplant, the AML would likely return in a matter of months. Since this drug is part of a trial, it can only be administered at Presbyterian St. Luke's hospital in Denver.
Current plan is to enter the hospital on Monday. This lets me play golf on Friday! Dr. Busby has not used this drug but says that he thinks that I would be in the hospital for 7 to 10 days while the drug is administered and then be outpatient during a recovery that would be more like the earlier consolidation experience rather than induction (which was 38 days in the hospital).
Not to overwhelm you with numbers but if complete remission is achieved, then the five year survival rate following an allogenic BMT is in the 40-50% range.
I am beginning to be more public with the situation so there is no particular need to keep this information within our little clan.
I'm sure that you have further questions, as do I, but there won't be any more answers until next week. Kathleen is doing her best but I think that the "do nothing" scenario from above really hit her hard today so she can use your support.
Dad (Gordon)
It's back.
My dad goes in for blood tests every three months to check for indicators for the return of his leukemia, and each time he does, the entire family holds our breath. About a month ago, on his standard test, his white counts were low. They immediately did a bone marrow biopsy, which was negative for leukemia. Weekly blood tests followed, and the white counts continued to drop. Another bone marrow test was performed about 2 weeks ago, the result showing 30% of his marrow being affected with AML. The doctor told my mom and dad about a new drug that's been getting better results, in trial at a hospital in Denver. He gave my dad the option to start treatment (chemo) on Friday June 19th or Monday June 22, and he opted for Monday.
I got the news on Thursday night and was able to book at flight from NY for my 2 year old and I, and we flew in Friday morning just in time to celebrate Carrie's birthday. We had a great weekend all together, despite the impending admittance to the hospital.
He entered the hospital at 1 PM on Monday, and the chemo began Wednesday morning at 9 AM. So far his only symptom has been fatigue, but experience tells us that he will soon have a fever and nausea. We anticipate another marrow draw on day 14 that will hopefully show no leukemia in his marrow. In the meantime, he will get a lot worse before he gets better.
I got the news on Thursday night and was able to book at flight from NY for my 2 year old and I, and we flew in Friday morning just in time to celebrate Carrie's birthday. We had a great weekend all together, despite the impending admittance to the hospital.
He entered the hospital at 1 PM on Monday, and the chemo began Wednesday morning at 9 AM. So far his only symptom has been fatigue, but experience tells us that he will soon have a fever and nausea. We anticipate another marrow draw on day 14 that will hopefully show no leukemia in his marrow. In the meantime, he will get a lot worse before he gets better.
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