The weekend of celebration of Bill’s life put into perspective all that he stood for. The visitation on Friday evening honored Bill. Many who came to the visitation were discovering for the first time that he was a coal miner, actor, and a University of TN and Steeler fan. Janine, Jon, and Kari arranged five picture boards, and with the help of his sister, Gail, and digital cameras, we were able to have photos of his childhood.
Bill’s wishes were to be cremated and his ashes placed in the Smokey Mountains of Tennessee. Our Tennessee friends say they know just the place and will guide us there when the time comes.
The Memorial Service on Saturday was so Bill. The music, the eulogies, the scriptures read, were to his glory, and the glory of God. Two of our church choirs sang. The New Life Singers, a group of about 16, sang “In the Garden”, and the Grace Praise Team, a contemporary group with guitars and drums sang “Higher Throne” and “May the Road Rise to Meet You”. Plus, our choir director, Dan Wagner, sang “The Lord’s Prayer”. The music was so meaningful.
Then the eulogies. Janine represented the family. She managed to keep her emotions under control and showed the “daddy” side of Bill. From Bill buying her a drink at college, to Jon being a “human clamp with an engineer’s degree”, to Kari counting her dad’s freckles when a splinter was being pulled.
Pennie represented the choirs and his love of music.
Mark talked about Bill as a friend and family man, and Tom, a business friend, saw Bill from his Christian business ethics, and love of all persons, no matter what their place in life.
Our friends and family traveled from West Virginia, Pennsylvania, Tennessee, Kentucky, North Carolina, Ohio, Indiana, Delaware and Wisconsin . Some spent the weekend, others flew out and back in the same day. About 200 people attended the service and many stayed for the reception following.
Bill has left his mark in this world. He will be missed by family members, friends and business associates. Thank you for supporting us through this adventure, and lets hope something good comes from Bill’s loss of life to cancer.
Bless you all.
Nancy
Tuesday, May 6, 2008
Thursday, May 1, 2008
John William Huber
"Bill"John William "Bill" Huber, 59 years old, a resident of Naperville, IL since 1999. He was born January 21, 1949 in Pittsburgh, PA. He died Monday, April 28, 2008 at his home.
Bill is survived by his wife, Nancy (nee Hesel) Huber of Naperville, whom he married August 7, 1971; three children, Janine Huber (Donald) Garner of Indianapolis, IN, Jonathan William (Laura Ziegler) Huber of Knoxville, TN, Dr Kari Huber (Jeffery) Langley of Charlotte, NC; two grandchildren, Margaret "Maggie" Jean Garner and Andrew James Langley; his mother, Pauline Polizzi Huber of Elco, PA; two sisters, Paula Huber (James) Anderson and Gail Huber (Marty) Abercrombie; and numerous nieces and nephews as well as grand-nieces and nephews.
He was preceded in death by his father, William T. Huber.
Bill grew up in Elco, PA and attended California High School, California, PA where he was President of the Senior Class. He was a 1971 graduate of Drexel University, Philadelphia, PA, where he received his BS degree in Civil Engineering. He was a member of Men's Glee Club, Lacrosse Team, and a founding father of a local chapter of Sigma Alpha Theta Fraternity, which became Sigma Alpha Epsilon.
In 1974, he received his Professional Engineer Certification and had his license in Pennsylvania, West Virginia, Kentucky, Utah and Colorado. He began his career in underground mining in Pennsylvania and advanced to mining operations in Virginia, Kentucky, West Virginia, serving as president at numerous coal-mining companies and was a member of Careers in Coal since 1990. He ended his career employed by Weir International Mining Consultants in Downers Grove, IL as a mining consultant.
Bill's love of music was evident when he performed in numerous church choirs including the Chancel Choir, New Life Singers, and Grace Praise Team at Grace United Methodist Church. He also performed in Community Theater in London, KY performing in Damn Yankees, Music Man, 1776, and Carrousel.
His love of children included activities as a soccer coach, a church youth mission leader, and as a church league basketball coach.Memorial Visitation Friday May 2nd, 4-8pm at Friedrich-Jones Funeral Home, 44 S. Mill St., Naperville. Memorial Services Saturday May 3rd, 1:30pm at Grace United Methodist Church, 300 E. Gartner Rd., Naperville. Interment: private.
In lieu of flowers, please make donations in Bill Huber's memory to: Grace United Methodist Church, 300 E. Gartner Rd., Naperville, IL 60540 OR Leukemia Research Foundation, 3520 Lake Avenue, Suite #202, Wilmette, IL 60091-1064. The Leukemia Foundation asks that you include this information with your donation: In memory of Bill Huber, 512 Bourbon Lane, Naperville, IL 60565.
Monday, April 28, 2008
April 28th- Until we meet again...
While holding the hand of his wife, Bill took his last breaths and took his place in Heaven just before midnight on Sunday.
While his battle with leukemia was strong and full of fight, his last moments were peaceful and full of love.
The Huber family extends our deepest thanks to all of you that have been a part of this journey. We cannot begin to express how much so many of you have done to give us strength. You have made a lasting imprint on our lives.
For those of you who would like to join us in a celebration of this great husband, father, brother, son and friend, here are the plans:
Friday, May 2
Visitation
4 – 8 pm
Friedrich-Jones Funeral Home
44 S. Mill Street
Naperville, Illinois 60540
Saturday, May 3
Memorial Service
1:30pm
Grace United Methodist Church
300 E. Gartner Road
Naperville, Illinois 60540
In lieu of flowers, please make donations in Bill Huber’s memory to:
Grace United Methodist Church (address above)
Or
Leukemia Research Foundation
3520 Lake Avenue, Suite #202
Wilmette, Illinois 60091-1064
----The foundation asks that you include this information with your donation:
In memory of Bill Huber
512 Bourbon Lane
Naperville, IL 60565
May the road rise to meet you.
May the wind blow at your back.
May the sun shine warmly on your face.
May the rain fall softly on your field.
And until we meet again,
May God hold you in the palm of His hand.
Amen.
While his battle with leukemia was strong and full of fight, his last moments were peaceful and full of love.
The Huber family extends our deepest thanks to all of you that have been a part of this journey. We cannot begin to express how much so many of you have done to give us strength. You have made a lasting imprint on our lives.
For those of you who would like to join us in a celebration of this great husband, father, brother, son and friend, here are the plans:
Friday, May 2
Visitation
4 – 8 pm
Friedrich-Jones Funeral Home
44 S. Mill Street
Naperville, Illinois 60540
Saturday, May 3
Memorial Service
1:30pm
Grace United Methodist Church
300 E. Gartner Road
Naperville, Illinois 60540
In lieu of flowers, please make donations in Bill Huber’s memory to:
Grace United Methodist Church (address above)
Or
Leukemia Research Foundation
3520 Lake Avenue, Suite #202
Wilmette, Illinois 60091-1064
----The foundation asks that you include this information with your donation:
In memory of Bill Huber
512 Bourbon Lane
Naperville, IL 60565
May the road rise to meet you.
May the wind blow at your back.
May the sun shine warmly on your face.
May the rain fall softly on your field.
And until we meet again,
May God hold you in the palm of His hand.
Amen.
Thursday, April 24, 2008
April 24th- The cancer has returned
Give this cancer an inch and it takes a yard. When I last wrote the blasts in Bill’s blood were at 4%, no big deal. By Tuesday, the blasts were at 20%, and by today, Thursday, the blasts are at 86% of his blood. Without chemotherapy, there is no stopping Acute Mylogenous Leukemia FLT 3+. It is so aggressive.
Bill is eating very little, and drinking less. The doctor has ordered platelets and saline IV to make him more comfortable for the weekend. I have also learned that when a patient is dehydrated, the blood results are affected. With less fluids in your blood, the counts are exaggerated. The blasts may lower after saline is given.
This is a big weekend with his mom, sisters, two nieces, one boyfriend, and one great-niece
coming in to visit from Pittsburgh, PA. Once again, our friends have stepped forward. One provided airfare for one family member, others are providing transportation to and from the airport, and several friends are preparing meals for the whole weekend. We are so blessed with friends that have made themselves available so I can take care of Bill. I could not have done it without them all.
The next few days and weeks are very critical. When Bill refuses additional saline and platelets, then hospice will be contacted. I will keep you informed.
Please continue to pray for Bill’s comfort. He is not in any pain at this time. Thank the Lord. I pray that will continue to be the case.
Love you all. Our faith will help us through this.
Bill is eating very little, and drinking less. The doctor has ordered platelets and saline IV to make him more comfortable for the weekend. I have also learned that when a patient is dehydrated, the blood results are affected. With less fluids in your blood, the counts are exaggerated. The blasts may lower after saline is given.
This is a big weekend with his mom, sisters, two nieces, one boyfriend, and one great-niece
coming in to visit from Pittsburgh, PA. Once again, our friends have stepped forward. One provided airfare for one family member, others are providing transportation to and from the airport, and several friends are preparing meals for the whole weekend. We are so blessed with friends that have made themselves available so I can take care of Bill. I could not have done it without them all.
The next few days and weeks are very critical. When Bill refuses additional saline and platelets, then hospice will be contacted. I will keep you informed.
Please continue to pray for Bill’s comfort. He is not in any pain at this time. Thank the Lord. I pray that will continue to be the case.
Love you all. Our faith will help us through this.
Monday, April 21, 2008
April 21st- All is well...
Bill is so comfortable at home. His bed, his TV, friends and family visiting everyday, and a good nights rest. In the past two weeks, at least one of our children has been with us everyday. They have rotated in and out of Chicago and have been a tremendous help. It is such a joy to have them here.
Local friends have been by daily, but our biggest surprise was a visit from a friend from Kentucky and one from WV who drove into town, visited for a few hours, and turned around and drove home. Bill enjoyed seeing them so much, and so did I.
The cancer has not returned, as of this writing. His body is frail, and energy level is low. We are taking each day, one day at a time.
Friday, April 18, 2008
And Now A Word From Maggie
Grandpap is getting settled into bed for the night, so I have just a quick minute to tell all you wonderful people how my Grandpap is doing before Nana comes in here and makes me go to bed.
My mommy and I have been here for three days and I've learned that Grandpap and I have a lot in common. We both like our naps, we enjoy sweets more than veggies and we both have people taking care of us all the time.
We always found time to play! I showed Grandpap how to work all my toys (especially the loud ones) and how fast I can walk. If I practice a little more, I may be able to beat Grandpap in a race. But only if I don't have to make any turns.
While I've been here lots of friendly people have stopped by to visit or to bring some delicious food. The phone is always ringing with someone trying to bridge the distance with well-wishes. Nana and Grandpap have such wonderful friends. All my friends do is pull my hair or take my toys - I'm glad to see friendship gets better as you get older.
Today, Grandpap got platelets at the hospital. He came back pretty tired, but at the dinner table I told him lots of stories. I have a lot to say. He laughed a lot and said something to my mommy about karma. I don't know what that is, but mom rolled her eyes.
Well, it's time for me to get to bed and say my prayers for Grandpap. I think God must be listening, because he's smiling a lot more lately.
Wednesday, April 16, 2008
Can someone clone Mom???
Hello... Jon here, back by (un)popular demand. Mom asked me to write the blog today, so here goes.
As to be expected, Dad likes being at home much better than at the hospital. He can sleep with minimal interruptions, has a full selection of basic cable channels to choose from, and the food is much better (thanks to Mom, Questors, and the Church Choir). While I'm thanking people, thanks to the Meadors for my ride to and from the airport... and a 'future shout-out' to the Atkins, Duffs, Shotts, and Seidlitzs (Seidlitz-es???, never covered that in English class).
As for visitors, I've learned two important rules. First, use hand sanitizer immediately... otherwise Mom forgets to ask. Second, hugs are better than hand shakes. At this point, it's all about the germs. Everyone, including me, has broken these rules... and Mom forgets about the enforcement. It's the New World Order, and I know you understand.
Mom continues to stay busy with phone calls to Health Care Groups and Insurance Companies, as well as the stack of paperwork... oh... and Dad needs attention, too.
As to be expected, Dad likes being at home much better than at the hospital. He can sleep with minimal interruptions, has a full selection of basic cable channels to choose from, and the food is much better (thanks to Mom, Questors, and the Church Choir). While I'm thanking people, thanks to the Meadors for my ride to and from the airport... and a 'future shout-out' to the Atkins, Duffs, Shotts, and Seidlitzs (Seidlitz-es???, never covered that in English class).
As for visitors, I've learned two important rules. First, use hand sanitizer immediately... otherwise Mom forgets to ask. Second, hugs are better than hand shakes. At this point, it's all about the germs. Everyone, including me, has broken these rules... and Mom forgets about the enforcement. It's the New World Order, and I know you understand.
Mom continues to stay busy with phone calls to Health Care Groups and Insurance Companies, as well as the stack of paperwork... oh... and Dad needs attention, too.
Monday, April 14, 2008
April 14th- Home Sweet Home
Bill did really well on his trip home from the hospital on Friday. He was seeing the outside of the hospital for the first time when we left. Remember in February, we went to the clinic for a doctor’s visit, and they whisked us off to the hospital through breezeways and hallways, never going outside. A breath of fresh air, and a car ride home, was just what the doctor ordered.
We now have a hospital bed in the living room, that Bill has not laid down on. He is perfectly happy on the couch, with the remote, and sleeping in his own bed. Life is good.
Each day I have noticed a little more energy and his appetite improving. Plus he has very little pain. It is just nice to be home.
The Sunday school class, Grace Praise Team (choir), neighbors and Bill’s boss, Dennis, have been wonderful. Our meals have been delicious, some have picked up prescriptions at the pharmacy, others have shuttled the family to and from the airport at terrible hours of the day. We are blessed to know so many people who want to help. And their help is greatly appreciated.
Our adult children are all coming in one at a time. Kari, Jeff and Andrew (he is soooo cute and so good) were here over the weekend. Andrew brought a smile to Bill’s face. Kari watched me flush Bill’s IV line, and administer medications. The home health care nurse had given me instructions, but it was still nice to have her here for the first time on my own. Kari and family left early Monday, and Jon arrives about noon. I will try to get him to write the blog before he leaves for his take on this adventure.
A blood draw was done this morning. As soon as the labs send the results to the doctors we will know what blood products Bill needs and those will be administered at home. Amen.
Hospice is not part of the process at this time. As long as Bill is accepting blood products (platelets and red cells) and medications to prolong life, then the home health nurse meets these needs. Hospice will be available when Bill refuses life saving measures. The decision is totally in Bill’s control.
Visitors are welcome if you are healthy. Bill cannot fight off any infection. Short visits are best because he tires quickly, but he enjoys seeing everyone so much. Just call first.
Thank you for your wonderful messages. You have been so supportive through this whole illness, which is not over yet. The Lord is meeting our needs, one day at a time.
We now have a hospital bed in the living room, that Bill has not laid down on. He is perfectly happy on the couch, with the remote, and sleeping in his own bed. Life is good.
Each day I have noticed a little more energy and his appetite improving. Plus he has very little pain. It is just nice to be home.
The Sunday school class, Grace Praise Team (choir), neighbors and Bill’s boss, Dennis, have been wonderful. Our meals have been delicious, some have picked up prescriptions at the pharmacy, others have shuttled the family to and from the airport at terrible hours of the day. We are blessed to know so many people who want to help. And their help is greatly appreciated.
Our adult children are all coming in one at a time. Kari, Jeff and Andrew (he is soooo cute and so good) were here over the weekend. Andrew brought a smile to Bill’s face. Kari watched me flush Bill’s IV line, and administer medications. The home health care nurse had given me instructions, but it was still nice to have her here for the first time on my own. Kari and family left early Monday, and Jon arrives about noon. I will try to get him to write the blog before he leaves for his take on this adventure.
A blood draw was done this morning. As soon as the labs send the results to the doctors we will know what blood products Bill needs and those will be administered at home. Amen.
Hospice is not part of the process at this time. As long as Bill is accepting blood products (platelets and red cells) and medications to prolong life, then the home health nurse meets these needs. Hospice will be available when Bill refuses life saving measures. The decision is totally in Bill’s control.
Visitors are welcome if you are healthy. Bill cannot fight off any infection. Short visits are best because he tires quickly, but he enjoys seeing everyone so much. Just call first.
Thank you for your wonderful messages. You have been so supportive through this whole illness, which is not over yet. The Lord is meeting our needs, one day at a time.
Wednesday, April 9, 2008
April 9th- Going Home
This is one decision I hope you personally never have to make.
But what a blessing that Bill has the mental awareness to make the decision on his own. Bill has decided that he doesn’t want to fight the battle against cancer anymore. We are going home. This was Bill's 7th round of chemotherapy in seven months. He is tired. No more treatments. The doctors and nurses have been very supportive. Arrangements are being made for care at home and hospice will be available when needed.
We might be home on Friday, but that could change. There probably won’t be any news for a few days. We will be busy setting up the house for his homecoming. The family (children and grandchildren) will all be flying or driving in over the next several days.
Our prayers are for comfort and strength for all of us.
And if you are reading this, you are our closest of friends (and family), and I send you my prayer of comfort. I know you hurt too.
But what a blessing that Bill has the mental awareness to make the decision on his own. Bill has decided that he doesn’t want to fight the battle against cancer anymore. We are going home. This was Bill's 7th round of chemotherapy in seven months. He is tired. No more treatments. The doctors and nurses have been very supportive. Arrangements are being made for care at home and hospice will be available when needed.
We might be home on Friday, but that could change. There probably won’t be any news for a few days. We will be busy setting up the house for his homecoming. The family (children and grandchildren) will all be flying or driving in over the next several days.
Our prayers are for comfort and strength for all of us.
And if you are reading this, you are our closest of friends (and family), and I send you my prayer of comfort. I know you hurt too.
Monday, April 7, 2008
April 7th- Next round of Chemo
We did not get the results back on the bone marrow biopsy today. His white cell count is not good, way too high, so we are not anticipating an encouraging number on blasts in his bone marrow.
Bill's liver enzymes and bilirubin counts are continuing to improve, and he is not in any pain. The doctors decided to proceed with the chemo treatment as planned. That started at 6pm this evening and it will be given one hour a day for 5 days.
Bill is communicating again, now that he is not on vicodin. He is not eating, so we will work on that.
Please pray for him as we enter this new round of chemo. He is getting tired.
Bill's liver enzymes and bilirubin counts are continuing to improve, and he is not in any pain. The doctors decided to proceed with the chemo treatment as planned. That started at 6pm this evening and it will be given one hour a day for 5 days.
Bill is communicating again, now that he is not on vicodin. He is not eating, so we will work on that.
Please pray for him as we enter this new round of chemo. He is getting tired.
Sunday, April 6, 2008
April 6th- Improvement
Bill had a good day.
No pain at the catheter site, and no pain medication taken. His only discomfort was in his pelvis area. This is where Bill makes Neutrophils. When your body produces Neutrophils, the most common site is the breastbone, but the pelvis is the next most common area. His white cells have been rising, 6900, and Nurse Nancy predicts the Neutrophil count will take a big jump with the next blood draw. His hemoglobin is up to 12.4 without any transfusion. Which means to me that the cancer cells are not destroying his red cells. And, the blasts in his blood are holding steady at 24%. (Good news-bad news).
The liver is still a concern with his bilirubin counts being twice that of normal, and the SGOT is 161 and SGPT is 230. Both have come down considerably, but are 5 times normal. I will be anxious to hear what the doctors say on Monday. I think his catheter is no longer painful because now he is making the good white cells and they have helped to kill infection and heal the wound. That’s my take. We will see what tomorrow brings. Wouldn’t it be nice to have two good days in a row.
Not to pop our bubble here, but the bone marrow biopsy results should be available on Monday also.
Thank you for your prayers. It was an amazing turnaround over the weekend. We are back in the game again. All aboard. The next trip on the roller coaster is about to begin.
Please pray with me for healing powers directed to his liver. He has to have good enzyme and bilirubin counts to proceed towards a transplant. Amen
No pain at the catheter site, and no pain medication taken. His only discomfort was in his pelvis area. This is where Bill makes Neutrophils. When your body produces Neutrophils, the most common site is the breastbone, but the pelvis is the next most common area. His white cells have been rising, 6900, and Nurse Nancy predicts the Neutrophil count will take a big jump with the next blood draw. His hemoglobin is up to 12.4 without any transfusion. Which means to me that the cancer cells are not destroying his red cells. And, the blasts in his blood are holding steady at 24%. (Good news-bad news).
The liver is still a concern with his bilirubin counts being twice that of normal, and the SGOT is 161 and SGPT is 230. Both have come down considerably, but are 5 times normal. I will be anxious to hear what the doctors say on Monday. I think his catheter is no longer painful because now he is making the good white cells and they have helped to kill infection and heal the wound. That’s my take. We will see what tomorrow brings. Wouldn’t it be nice to have two good days in a row.
Not to pop our bubble here, but the bone marrow biopsy results should be available on Monday also.
Thank you for your prayers. It was an amazing turnaround over the weekend. We are back in the game again. All aboard. The next trip on the roller coaster is about to begin.
Please pray with me for healing powers directed to his liver. He has to have good enzyme and bilirubin counts to proceed towards a transplant. Amen
Saturday, April 5, 2008
April 5th- "Funky" is not a good thing
Beware. If a nurse ever uses the word “funky” to describe the results of a blood test, and they want to retest, it means something is wrong. This is the second time this has happened to Bill. The first was in the emergency room on the first day of his illness when his white cell count was over 100,000 and they wanted to draw another sample. This time it was the liver enzyme test and they wanted to redraw the blood. Both times the nurse described the blood work as “funky” and both times the outcome was not good. Therefore, my conclusion is, you don’t want to hear a nurse call a blood test “funky.”
Yes, his liver enzymes were over the top. Today he is doing better. Who would have thought? The numbers are already coming down, still in the high 200’s, but they are not getting worse. That is very good news.
The CT scan showed the catheter was still in place and no Leukemic masses around the liver, everything looked good. The doctor’s only conclusion for the high count is the newly formed white cells are working overtime to kill infection. These white cells must filter through the liver, and that is why there was a sudden rise in the enzyme counts.
All chemotherapy has been stopped until his liver recovers. The blasts have increased to 43% of his blood as of Friday. Without chemo, they will continue to multiply rapidly. The drug, Hydrea, will be given to Bill again. It controls the Leukemia blasts, but doesn’t eliminate it. It also is a little better for the liver and not hard on Bill.
Bill is not out of danger yet, but in much better shape then the doctors thought he would be. Preparation for the next step towards transplant has been delayed for a few days, but is still an option. We begin this new week a lot more optimistic then we finished last week.Our roller coaster ride continues
Yes, his liver enzymes were over the top. Today he is doing better. Who would have thought? The numbers are already coming down, still in the high 200’s, but they are not getting worse. That is very good news.
The CT scan showed the catheter was still in place and no Leukemic masses around the liver, everything looked good. The doctor’s only conclusion for the high count is the newly formed white cells are working overtime to kill infection. These white cells must filter through the liver, and that is why there was a sudden rise in the enzyme counts.
All chemotherapy has been stopped until his liver recovers. The blasts have increased to 43% of his blood as of Friday. Without chemo, they will continue to multiply rapidly. The drug, Hydrea, will be given to Bill again. It controls the Leukemia blasts, but doesn’t eliminate it. It also is a little better for the liver and not hard on Bill.
Bill is not out of danger yet, but in much better shape then the doctors thought he would be. Preparation for the next step towards transplant has been delayed for a few days, but is still an option. We begin this new week a lot more optimistic then we finished last week.Our roller coaster ride continues
Friday, April 4, 2008
April 4th- Prayers are needed
The Leukemia is back with a vengeance. Bill’s liver counts are 10 times above normal. For those who understand. SGOT is 340 and SGPT is 318. He is being sent for a CT scan this evening and I won’t have results until Saturday afternoon. It could be several things.
His white cells and Neutrophils are increasing, and they could be fighting an infection.
His catheter could be causing a problem.
His liver may be compromised
The only discomfort Bill has today is from the double bone marrow biopsy performed this morning. Two extractions were taken. One for the hospital, and one for the clinical study.
The catheter is not bothering him.
Bill is very much aware of what is happening and seeks your prayers and love at this time.
A bird doesn’t sing because it has an answer.
It sings because it has a song.
Maya Angelou
Bill always has a song to sing.
His white cells and Neutrophils are increasing, and they could be fighting an infection.
His catheter could be causing a problem.
His liver may be compromised
The only discomfort Bill has today is from the double bone marrow biopsy performed this morning. Two extractions were taken. One for the hospital, and one for the clinical study.
The catheter is not bothering him.
Bill is very much aware of what is happening and seeks your prayers and love at this time.
A bird doesn’t sing because it has an answer.
It sings because it has a song.
Maya Angelou
Bill always has a song to sing.
Wednesday, April 2, 2008
April 2nd- Matchmaker Matchmaker, make me a match
The University of Chicago Medical Center has accepted Bill for a bone marrow transplant. Yeah!!!! The doctors meet on Thursday, and official approval will be made then, but I think we are on our way. He is a candidate for the transplant that has been tried in Spain. With this procedure the patient receives stem cells from a related donor with a 50% match and cord blood stem cells that are also a 50% match. The doctors prefer a male donor over female because a female that has been pregnant can also have some of her baby’s stem cells in her bone marrow. This can complicate the recovery.
The first step is to see if our son, Jon, is eligible to be a donor. Over Christmas the family all did DNA testing, and from those results it appears Jon will be a 50% match. He will be sent a blood draw kit to take to a hospital in Knoxville. The blood samples will then be sent onto a lab that will analysis the antigens of his blood and we will pray for at least a 50% match. Loyola Hospital has already put a hold on a cord blood sample that is more then a 50% match. We pray that Loyola will release that hold to University of Chicago Hospital.
This first step will take about 2 weeks. During this time, Bill can continue to heal from the gall bladder surgery. He spent a couple of hours in a chair today, and played the Wii game with the recreational therapist. It seemed like he had a little less pain medication today, which is an improvement.
We are finally on our way to the next step. His cancer is returning. But the increase was only 16% blasts in his blood. It did not double as in previous days.
We pray for a 50% or better match with Jon’s blood test.
We pray that Loyola’s doctors will release the hold on the cord blood sample to U of C.
We pray that Bill’s biliary catheter continues to heal and the pain controlled.
The first step is to see if our son, Jon, is eligible to be a donor. Over Christmas the family all did DNA testing, and from those results it appears Jon will be a 50% match. He will be sent a blood draw kit to take to a hospital in Knoxville. The blood samples will then be sent onto a lab that will analysis the antigens of his blood and we will pray for at least a 50% match. Loyola Hospital has already put a hold on a cord blood sample that is more then a 50% match. We pray that Loyola will release that hold to University of Chicago Hospital.
This first step will take about 2 weeks. During this time, Bill can continue to heal from the gall bladder surgery. He spent a couple of hours in a chair today, and played the Wii game with the recreational therapist. It seemed like he had a little less pain medication today, which is an improvement.
We are finally on our way to the next step. His cancer is returning. But the increase was only 16% blasts in his blood. It did not double as in previous days.
We pray for a 50% or better match with Jon’s blood test.
We pray that Loyola’s doctors will release the hold on the cord blood sample to U of C.
We pray that Bill’s biliary catheter continues to heal and the pain controlled.
Tuesday, April 1, 2008
April 1st- Contolling the pain
Bill said this morning, “If it wasn’t for this pain in my side, I would feel good”. It is such a shame that the catheter to his gall bladder is so painful for him. But he is a trooper and is getting through it.
Two weekends ago a pump for pain medication was placed in the room. That worked great until last weekend when we had an issue where the nurses and “sitters” were pushing the button for him. (A huge no-no) Once again Bill was over medicated. He received 20 doses in 2 days. That is only 2 mg of Dilaudid in 2 days, and a healthy person would not even notice this dosage, but it is way too much for Bill. After bringing this to the attention of the doctors, the pump has been removed and the nurses will administer the pain killer when requested. Yesterday he requested medication just 3 times. Today he is conversational and eating well. Something I haven’t seen for 3 days.
Bill’s blood work is progressing in the right direction. Neutrophils (the good guys) are being produced every day and increasing in numbers. Amen. He didn’t have any blood products last night and still the numbers are good. For those who want to know. White cells are at 1400. Hemoglobin is at 9.3. Platelets are 51,000 (this means he can brush his teeth and not bleed). ANC is 1600.
More good news. There is no sign of Leukemia Cutis, the skin rash. At this point, post chemo, he would have been covered in a rash. Remember that the skin is the organ that Bill’s leukemia decided to attack. The ABT-869 drug is working here, as anticipated.
The bad news, the cancer in is blood is back, and is doubling each day. Today the blasts are at 16%. This is expected. His bone marrow biopsy showed that there were blasts remaining, and those blasts will reproduce. Blasts are immature white cells, which we all have, and some of those blasts could develop into good white cells, as they would in a healthy individual. But Bill’s track record is not good here, so we will see what happens.
No new news on the bone marrow transplant process. Hopefully in a few days we will move forward.
Again our prayers are for healing and pain relief for Bill. We are taking baby steps in the right direction.
Love you all. God Bless.
Two weekends ago a pump for pain medication was placed in the room. That worked great until last weekend when we had an issue where the nurses and “sitters” were pushing the button for him. (A huge no-no) Once again Bill was over medicated. He received 20 doses in 2 days. That is only 2 mg of Dilaudid in 2 days, and a healthy person would not even notice this dosage, but it is way too much for Bill. After bringing this to the attention of the doctors, the pump has been removed and the nurses will administer the pain killer when requested. Yesterday he requested medication just 3 times. Today he is conversational and eating well. Something I haven’t seen for 3 days.
Bill’s blood work is progressing in the right direction. Neutrophils (the good guys) are being produced every day and increasing in numbers. Amen. He didn’t have any blood products last night and still the numbers are good. For those who want to know. White cells are at 1400. Hemoglobin is at 9.3. Platelets are 51,000 (this means he can brush his teeth and not bleed). ANC is 1600.
More good news. There is no sign of Leukemia Cutis, the skin rash. At this point, post chemo, he would have been covered in a rash. Remember that the skin is the organ that Bill’s leukemia decided to attack. The ABT-869 drug is working here, as anticipated.
The bad news, the cancer in is blood is back, and is doubling each day. Today the blasts are at 16%. This is expected. His bone marrow biopsy showed that there were blasts remaining, and those blasts will reproduce. Blasts are immature white cells, which we all have, and some of those blasts could develop into good white cells, as they would in a healthy individual. But Bill’s track record is not good here, so we will see what happens.
No new news on the bone marrow transplant process. Hopefully in a few days we will move forward.
Again our prayers are for healing and pain relief for Bill. We are taking baby steps in the right direction.
Love you all. God Bless.
Friday, March 28, 2008
March 28th- Moving Forward
What a difference one week can make. Bill is still handling the ABT-869 drug very well. It is controlling the cancer cells in his blood, and has very few side effects. It is the answer to a prayer.
Thursday the doctors reported that Neutrophils were noticed by the lab in his blood. They are the good white cells that we need to fight infection. The numbers are small, but at least his bone marrow is beginning to produce them again.
Bill can now control his pain with the Dilaudid drug pump, and the most he has taken is .6mg in 24hrs. I think the pain is a little less each day, but that is my opinion, not his. The doctors say his pain is probably caused by gall stones.
Bill received red cells and platelets today. After his 4 hour nap (caused by Benadryl for the platelets) he then had a visit from the Recreational Therapist who brought into the room a big TV and a WII game. (Pronounced wee for those who do not recognize the word). He started out easy with the fishing, skeet shooting, and hockey games. I will know he is feeling better when he wants to play golf on it. This is a great hand-eye coordination game and kept him task oriented.
Earlier today Jan Gavin sent out a prayer request to our Sunday school class to pray for Bill to take a walk. He must walk the halls to prove he has the strength to move on to transplant. Finally at 4pm he gave in to my nagging and we went for a walk. Thanks to all of you who read the prayer and gave him the strength to walk out the door. His first time out of the room in over a week. He is now napping again.
I’m at the hospital tonight. Janine, Don and Maggie are coming in for the weekend. The snow and bad roads kept them away for Easter weekend. We can all be jealous of Janine. She and her girlfriends are going to the Oprah show on Monday. I’ll let you know the televised date later.
We arrived at the University of Chicago Hospital one month ago. We thank the Lord for one more chance at life, one more month that we didn’t think we had, and pray for the strength to go on. Amen
Thursday the doctors reported that Neutrophils were noticed by the lab in his blood. They are the good white cells that we need to fight infection. The numbers are small, but at least his bone marrow is beginning to produce them again.
Bill can now control his pain with the Dilaudid drug pump, and the most he has taken is .6mg in 24hrs. I think the pain is a little less each day, but that is my opinion, not his. The doctors say his pain is probably caused by gall stones.
Bill received red cells and platelets today. After his 4 hour nap (caused by Benadryl for the platelets) he then had a visit from the Recreational Therapist who brought into the room a big TV and a WII game. (Pronounced wee for those who do not recognize the word). He started out easy with the fishing, skeet shooting, and hockey games. I will know he is feeling better when he wants to play golf on it. This is a great hand-eye coordination game and kept him task oriented.
Earlier today Jan Gavin sent out a prayer request to our Sunday school class to pray for Bill to take a walk. He must walk the halls to prove he has the strength to move on to transplant. Finally at 4pm he gave in to my nagging and we went for a walk. Thanks to all of you who read the prayer and gave him the strength to walk out the door. His first time out of the room in over a week. He is now napping again.
I’m at the hospital tonight. Janine, Don and Maggie are coming in for the weekend. The snow and bad roads kept them away for Easter weekend. We can all be jealous of Janine. She and her girlfriends are going to the Oprah show on Monday. I’ll let you know the televised date later.
We arrived at the University of Chicago Hospital one month ago. We thank the Lord for one more chance at life, one more month that we didn’t think we had, and pray for the strength to go on. Amen
Thursday, March 27, 2008
March 27th- Two Steps Forward. One Step Back.
Bill has been doing so well, relatively speaking. The surgery area was healing well until……. the bile bag accidentally got caught on a hard surface and pulled at the incision. OUCH! Now he is back to square one. Healing all over again and taking the pain medicine. The new plan is to wait until Friday to see how he is doing.
Two plans are in motion.
1.Contact Loyola to see if they will accept him for a transplant.
2. University of Chicago oncology team is checking with their transplant team to see if he can be accepted there.
Bill will remain on the clinical study drug while he heals and the transplant process is coordinated. More on that later when we know which hospital will accept him.
Praise the Lord, we aren’t there yet, but we are getting closer.
Two plans are in motion.
1.Contact Loyola to see if they will accept him for a transplant.
2. University of Chicago oncology team is checking with their transplant team to see if he can be accepted there.
Bill will remain on the clinical study drug while he heals and the transplant process is coordinated. More on that later when we know which hospital will accept him.
Praise the Lord, we aren’t there yet, but we are getting closer.
Monday, March 24, 2008
March 24th- The Healing Power of Prayer
Several good things happened over the weekend.
The doctors could not control Bill’s pain with medications without overdosing him. He could only handle a small dosage, and it would last for hours, but during that time he had trouble eating, standing, speaking and was disorientated.
Finally, on Saturday afternoon, they put him on a PCAP (self- administer pump) that he could control the pain on demand.
Because he is on the pain medication (Dilaudid- .1mg every 10 min as needed) the staff wants someone in the room with him 24 hours a day. This is a huge relief to me. A “sitter” is by his bedside to assist him when I am not at the hospital. The charge nurse just asks me what my schedule is for the following day, and the other hours are covered. I can now stay at the hospital every other day for 24+ hours and go home for an evening.
The first night the sitter was here, she had Bill pushing the button for medication all night and day. He had 17 doses in 24 hours. The quantity was low for the time period, but the effects were over the top. Once again he could not communicate, eat or walk.
Since I have arrived at 1:30pm on Easter, Bill has had 2 doses of medication (9 hour timespand), he is not in pain, is eating well, and communicating again. I am now the Nurse Nazi and have laid down the law with the aides.
Bill received platelets twice over the weekend. Both were single donor, a 5 unit bag and a 10 unit bag. If you gave at LifeSource Blood Bank, know that your platelets were needed. Bill also had a reaction both days. It becomes more difficult to “type” his blood as he receives units of blood from a variety of people.
It is too soon for Neutrophil results, hopefully by Wednesday I will know more.
It was a weekend full of ups and downs, but overall, Bill seems better on this Monday morning.
Amen
Each day is a new adventure.
Hope you all had a wonderful Easter
The doctors could not control Bill’s pain with medications without overdosing him. He could only handle a small dosage, and it would last for hours, but during that time he had trouble eating, standing, speaking and was disorientated.
Finally, on Saturday afternoon, they put him on a PCAP (self- administer pump) that he could control the pain on demand.
Because he is on the pain medication (Dilaudid- .1mg every 10 min as needed) the staff wants someone in the room with him 24 hours a day. This is a huge relief to me. A “sitter” is by his bedside to assist him when I am not at the hospital. The charge nurse just asks me what my schedule is for the following day, and the other hours are covered. I can now stay at the hospital every other day for 24+ hours and go home for an evening.
The first night the sitter was here, she had Bill pushing the button for medication all night and day. He had 17 doses in 24 hours. The quantity was low for the time period, but the effects were over the top. Once again he could not communicate, eat or walk.
Since I have arrived at 1:30pm on Easter, Bill has had 2 doses of medication (9 hour timespand), he is not in pain, is eating well, and communicating again. I am now the Nurse Nazi and have laid down the law with the aides.
Bill received platelets twice over the weekend. Both were single donor, a 5 unit bag and a 10 unit bag. If you gave at LifeSource Blood Bank, know that your platelets were needed. Bill also had a reaction both days. It becomes more difficult to “type” his blood as he receives units of blood from a variety of people.
It is too soon for Neutrophil results, hopefully by Wednesday I will know more.
It was a weekend full of ups and downs, but overall, Bill seems better on this Monday morning.
Amen
Each day is a new adventure.
Hope you all had a wonderful Easter
Thursday, March 20, 2008
March 20th- Decision Delayed
March 20th- Decision Delayed
As anxious as the doctors are to start the bone marrow transplant process, the issues with the gall bladder must first be resolved. Bill continues to be heavily medicated to control the pain and consequently sleeps most of the day. The pain will continue until his body makes Neutrophils, or the good white cells. The Neutrophils will help heal the area around the tubing that goes through his liver.
It just happens that the hematologist from Loyola Hospital called our home today to check on Bill. (Have I ever mentioned how much I love this doctor?) She said it has been her experience that when a patient is neutropenic (low white cells) that the pain is terrible until the body makes the good cells. That chemo may have to be delayed to allow the good cells to grow again. That means the blasts will multiply also. Resuming chemo treatments later could possibly bring the blasts back under control. Bill cannot move onto a transplant until his biliary catheter surgery has healed and the gall bladder is less irritated. So, first things first.
We have always believed that things happen for a reason. When all this started in September I told Bill that everything that happened in his life to this point, prepared him for what he is now fighting. His faith, his desire to achieve and do the best he can, the wisdom learned from his parents, and the fighting desire to never give up. Bill has not given up. This is just one more obstacle. We are just waiting (not always patiently) to see what the Lord’s plan is next. We have already realized that our plan for the future was not the Lord’s plan.
Your prayers are appreciated so much. Thank you.
As anxious as the doctors are to start the bone marrow transplant process, the issues with the gall bladder must first be resolved. Bill continues to be heavily medicated to control the pain and consequently sleeps most of the day. The pain will continue until his body makes Neutrophils, or the good white cells. The Neutrophils will help heal the area around the tubing that goes through his liver.
It just happens that the hematologist from Loyola Hospital called our home today to check on Bill. (Have I ever mentioned how much I love this doctor?) She said it has been her experience that when a patient is neutropenic (low white cells) that the pain is terrible until the body makes the good cells. That chemo may have to be delayed to allow the good cells to grow again. That means the blasts will multiply also. Resuming chemo treatments later could possibly bring the blasts back under control. Bill cannot move onto a transplant until his biliary catheter surgery has healed and the gall bladder is less irritated. So, first things first.
We have always believed that things happen for a reason. When all this started in September I told Bill that everything that happened in his life to this point, prepared him for what he is now fighting. His faith, his desire to achieve and do the best he can, the wisdom learned from his parents, and the fighting desire to never give up. Bill has not given up. This is just one more obstacle. We are just waiting (not always patiently) to see what the Lord’s plan is next. We have already realized that our plan for the future was not the Lord’s plan.
Your prayers are appreciated so much. Thank you.
Tuesday, March 18, 2008
March 18th- P.U.S.H.
I will explain P.U.S.H. in a minute.
We have now come to the crossroads in our journey and it is time to decide which path to take.
The doctors report that the Leukemia is under control with the chemotherapy medication, but Bill is NOT in remission. Loyola Hospital does not like to do transplants when the patient is not in remission. There is little or no success.
Chicago University Hospital has been trying a transplant process (practiced in Spain) that involves both a 50% matched related donor and 50% matched cord blood sample. The combination allows the matched donors white cells to divide and mature immediately after the transplant, and the cord blood cells kick in about a week later. The combination has had a 10% success rate with Bill’s type of Acute Leukemia (FLT-3+).
Bill’s other option is to do nothing, there are no other options.
This is Bill’s decision, I’m along for the ride. You have been with us so far, now it is time to P.U.S.H. Pray Until Something Happens. Our prayers are for Bill’s comfort, he is still in a lot of pain from the surgery, and a clear mind to make this choice.
Thanks for being by our side on this journey.
We have now come to the crossroads in our journey and it is time to decide which path to take.
The doctors report that the Leukemia is under control with the chemotherapy medication, but Bill is NOT in remission. Loyola Hospital does not like to do transplants when the patient is not in remission. There is little or no success.
Chicago University Hospital has been trying a transplant process (practiced in Spain) that involves both a 50% matched related donor and 50% matched cord blood sample. The combination allows the matched donors white cells to divide and mature immediately after the transplant, and the cord blood cells kick in about a week later. The combination has had a 10% success rate with Bill’s type of Acute Leukemia (FLT-3+).
Bill’s other option is to do nothing, there are no other options.
This is Bill’s decision, I’m along for the ride. You have been with us so far, now it is time to P.U.S.H. Pray Until Something Happens. Our prayers are for Bill’s comfort, he is still in a lot of pain from the surgery, and a clear mind to make this choice.
Thanks for being by our side on this journey.
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