May 6th- Celebration of Bill's Life

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

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.

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.

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.

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.

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.

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.

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.

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.

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.

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

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

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.

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.

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.

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

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.

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

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.

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.

March 15th- Encouraging News

Finally, some encouraging news in our journey with this aggressive disease. Bill is recovering nicely from the surgery. He is still in a lot of pain when movement is involved, but it can be controlled by pain killers. He is eating well and can sleep at any moment, except when Tennessee basketball is on the TV, of course.
The good news is the chemotherapy is still controlling the bad white cells in his blood. The white cell count is staying low (500), and he hasn’t needed any packed red cells or platelet transfusions for several days. (That means the blasts aren’t taking over). These counts aren’t normal by any means, but a body can survive. The doctors also feel the clinical trial drug is helping control the cancer. Amen.
The transplant team at the University of Chicago Hospital has a different course of action for bone marrow transplants. With a manageable amount of blasts in the bone marrow, they will still do a transplant. The doctors administer a small amount of chemo, then a clinical trial drug that lowers counts in preparation for a transplant. (A different drug from the present clinical trial drug). When the transplant donor has contributed his marrow, the actual transplant preparations for Bill (high doses of chemo and radiation) will begin.
Loyola Medical Center, our previous hospital, likes the bone marrow to be “clean” and that means fewer than 5% blasts and your bone marrow in remission. UofC will accept up to 10% blasts depending on other factors. 2 ½ weeks ago, Bill’s bone marrow was 85% blasts.
Monday, March 17th, Bill will have his 9th bone marrow biopsy. It takes about 2 days for the results. Future action depends on these results. In fact, everything depends on the results.
We pray that the Lord places his healing hands on Bill. Amen

March 12th- What's Next?

I was glad I spent the night on Tuesday (my third night in a row to sleep at the hospital), because they called Bill for surgery at 7AM. During the night he received one bag of packed red cells and three- 5 unit bags of platelets, so sleep was really not on the schedule. That got his platelet count up to 119,000 (300,000 is low normal) and he could clot blood during surgery. The surgery only lasted one hour and a biliary catheter was in place. This catheter is placed in his right side, goes THROUGH the liver, and INTO his gallbladder. By draining the gallbladder the doctors hope the inflammation will subside, and the perforation will heal. This procedure was all done with the help of an ultrasound machine. The doctors saw 3 gull stones and said they were not going to cause a blockage. So an additional scope or surgery is not necessary at this time. Amen.
The reason they go through the liver is really for when the catheter is removed. The liver applies enough pressure to the gallbladder so when the tubing is removed, bile does not escape into the body. Bill’s gallbladder will be removed when he is healthier.
Movement is still difficult, but this evening his eyes are open and he is patiently waiting for his next pain pill. He won’t be allowed to eat until Thursday. And you can all imagine how that bothers me because I am all about food. I’m going to spend one more night at the hospital, just to help him. Hopefully on Thursday he will feel better.
Kari wrote me:
Happy moments……Praise God
Difficult moments…….Seek God
Quiet moments………Worship God
Painful moments……….Trust God
Every moment……....Think God

March 11th- Two Days of Tests

Just when things are going well for Bill, the doctors discover another problem. The extreme stomach pain Bill was occasionally experiencing turns out to be a gall bladder problem. After an ultrasound and CT Scan the doctors concluded he has 3 small gall stones, and a small tear in the lining of his gallbladder which is allowing bile to escape. Because he doesn’t have white cells to fight infection, this is a very dangerous situation.
Today they performed a HIDAscan (Hepatobiliary scan) in the Nuclear Medicine Room. This machine is like a big Geiger counter. A saline based tracer was injected into Bill’s veins. In his case, the tracer went right to his liver, and they watched it travel down the duct to his bowels. They were hoping it would go to his gall bladder so they could then see if it left the gallbladder through the tear in the lining. But, because of inflammation of the duct, it never entered the gallbladder.
If Bill was a healthy man, the doctors would just remove his gallbladder. Instead, on Wednesday morning between 7am and 9am CST they will place a drainage tube near his gallbladder to remove the bile. By doing this, they hope the inflammation of the lining will heal, and then the tear. Later they will scope his gallbladder to try and remove the gall stones. They say small stones are more dangerous then large stones because the small stones can block the ducts.
Bill will receive 2 bags of platelets, and 1 bag of red cells tonight. Then tomorrow before surgery, he will receive up to 2 more bags of platelets. The goal is to get a count of 75,000 in platelets.
Bill is still handling the clinical study drug very well. His counts are not improving, but they also aren’t getting worse, and his Leukemia Cutis (rash) has not surfaced as of this writing. Bill has more energy, appetite (if they would let him eat), and is more conversational. There are so many improvements that we hate to see any setbacks.
We will feel your arms wrapped around us in the morning.

March 9th- Life is Good

Bill is back. And that is a good thing. He was given red cells last night, and Nurse Nancy predicts he will get platelets tonight. It seems that whenever he gets red cells, more oxygen gets distributed throughout his body and brain, and he is so much better. The doctors say no to my observation.
The blasts in his blood are down to 8%. Praise the Lord, the chemo is doing it’s job. He has gone from 82% to single digits in 10 days. I told him today that he almost died last week, and he said to me, “Why didn’t you tell me I was dying?” I’ll be sure to let him know next time…….right.
I am spending every other night at the hospital. One, to avoid rush hour traffic and the long drive, and two, to catch the doctor’s rounds in the morning at 7am.. Right now, we are training the residents and fellows that just started working this floor the first of the month. After 6 months of this, we know more than they do.
Bill will have an ultrasound of his gallbladder on Monday to see if that is causing his stomach problems during the night. A bland diet seems to be helping.
Tonight will be Bill’s 4th dose of ABT-869. Just 22 more to go. He seems to be tolerating it well.
We are at the top of the hill right now, and hope to enjoy these good moments as long as possible. We are still praying for our little miracle with this drug.

March 7th- ABT-869

For all our medical friends and family, here is the scoop on the clinical study in layman terms. I hope others, who want to know, will also understand this explanation.
Abbott Laboratories has a chemotherapy drug that has been successful in controlling the cancerous growth of some tumors because it blocks the growth of new blood vessels and kills cancer cells. It is now being tried on Leukemia patients, like Bill, who have a chromosome mutation called FLT-3 Positive. This is the mutation that is very aggressive, and other chemotherapy treatments have not been able to control it (as we well know). Bill is the third person at The University of Chicago Hospital to be involved with this study. The other patients are 2 and 3 weeks ahead of him. It is too soon to tell if the drug is successful, but the other patients are far enough ahead to know what side effects need to be addressed.
Bill will take 10 mg of this drug in liquid form, mixed into Ensure for 26 days. The first day (Thursday) he had a blood draw every 15 minutes for the first hour. Then every half hour, then hourly for the rest of the day. The laboratory wants to monitor the drug in his blood stream, and watch how his body is handling the drug. This drug is experimental and is not approved by the FDA. It has the same side effects as other chemotheraphy drugs. After the first day, Bill is doing fine.
Bill will have his second dose Friday night, and future doses will be in the evening with blood work being drawn twice daily.
I have learned that Bill will not come home unless his good white cells improve to the point he is no longer neutropenic. Just like we watched the cancerous white cells decrease this week, we will want the Neutrophils (good white cells) to improve next week. Blasts in his blood stream are down to 14%.
Bill was even better today. He has an appetite, we took three walks (together), and he asked that I bring his book to read. Bill has not wanted to read since December. (I guess it takes red cells, oxygen to the brain, to read). He is conversational again and I feel like “our Bill” is back.
I have begun to realize that you are all on this roller coaster ride with us. When I didn’t get a blog off for a few days this week, my phone was ringing. I don’t like to make entries when there is a problem, until the crisis is over. And sometimes there is a “crisis” everyday. But the past 2 days have shown improvement everyday.
Let us pray for Bill’s continued improvement and God’s work in helping new drugs be developed to fight disease. Amen

March 5- Bill takes a stroll around the hospital

Two days ago Bill was so weak he couldn’t even get out of bed. He had been given morphine when he experienced extreme stomach pains, and he basically lost a day. He also had a blood clot in his arm over the weekend and had minor surgery to place a Hickman catheter in his chest and remove the PICC line in his arm.
This morning, when I arrived at the hospital, his room was empty. His shoes and socks are on the floor, his pants are on the bed, and shirt is off the hanger. It looked like he was getting ready for an escape. About 15 minutes later he strolls into the room. He says, “I went for a walk and I got lost”. He had been wondering the halls of the hospital for an hour. He spotted a transport person to ask for directions, the man found a wheelchair, and escorted him “home”. He said, “The next time I’ll drop breadcrumbs”. In his defense, this hospital is HUGE, with many different hospitals connected by walkways, and several wings to each section. I, myself, only know one way in and out.
Medically, Bill’s blood work is still improving. The blasts in his blood stream are down to 24%. The goal is 0. The doctors gave him a day of rest today, and will start the clinical study on Thursday. They are very pleased with his health going into the study.
Today was also a big day because our friends, the Wicks, Userys, and Luttrells flew in from three different states, visited for the whole day, and flew home this evening. We laughed, reminisced, cried, and prayed together. It meant so much to us that they took the time to be here for Bill and for me.
Our prayer this day is for new life as Bill begins the clinical study. May the Lord put his blessing on this drug that is about to enter Bill’s body. Amen

March 3- One more day of chemo

Bill is still fighting the battle. The chemotherapy is doing it's job. The blasts in his blood stream have gone from 82% to 48% of his blood. His white cell count of Leukemia blasts have dropped from 24,000 on Wednesday to 2200 this Monday. Amen. We will watch the numbers drop as he is receiving chemo, then hopefully watch the numbers go up when healthy white cells can develop in his bone marrow after chemotherapy.
Bill received one type of chemo, Hydrea, for the first three days. Now he is receiving 4 days of high dose cyterabine. Tuesday will be his fourth day. He is extremely fatigued, has no appetite, and is just hanging on, hoping tomorrow will be better.
Bill begins the clinical trial drug on Wednesday. The clinical trial drug is one that attacks new capillaries and destroys them, therefore discouraging new growth of a tumor or in Bill's case, Leukemia Cutis. The organ that Bill's leukemia has chosen to attack is his skin. He may take up to 26 doses of this drug, which is a liquid injected into Ensure. He will be monitored closely the first day. At home we will keep detailed records for the Abbott company to track the drug. We will see if this drug is our miracle.
The family did make it to Chicago last weekend. Bill's 93 year old mother is amazing. We should all look so good at 80. The babies entertained us for 2 days and everyone got a chance to spoil them. Best of all, they brought a smile to Bill's face. It was a great weekend, especially since Bill was feeling better than he is now. I will have pictures on the next blog. Those babies are so cute.
Lord, We pray for Bill. Give him strength. Amen.

February 28th- U of C here we come

Sorry I haven’t written, but the past two days have been a whirlwind. We arrived on Wednesday at the University of Chicago Advanced Medicine Center by limousine, compliments of a friend. (They didn’t want us driving to Chicago in rush hour and wanted it to be a calm relaxing trip, which it was.) After our consultation with the hematologist-oncologist we were given 4 options. There were 3 clinical trials for which Bill was eligible, and the fourth choice was to go home and do nothing. Bill said going home was not an option. With the doctor’s advice, we picked a clinical trial which was in the 2nd stage. She then suggested that Bill be admitted to the hospital that very day, and that medications be started immediately in the clinic.
Her concern was Bill’s white cell count was doubling almost everyday. It was 11,000 on Monday, 24,000 on Wednesday, and it would have gotten ugly later in the week. The medication was one that reduces white cell growth. After just 3 doses his white cell count was back down to 15,000 this morning, and I pray it is lower on Friday.

Here is the plan.
Today was orchestrated by the doctor. MRI of the brain, bone biopsy (his 9th), spinal fluid tests for leukemia, heart monitoring, and other tests. At one point, two wheelchairs appeared at the door to take him for testing. He said, “I can only go with one of you, pick one”.
After he passes all the tests, and meets the criteria of the study (which he should) they will start a low dose of cyterabine chemo on Friday that will last for 5 days. When his white cell blasts have been lowered to a manageable number, the clinical trial will begin. This will be a liquid that can be taken as long as 20 days at HOME. When I learn more about how this chemical works, I will share that information.
By the time we arrived at the hospital, on Wednesday, Bill was so fatigued he could not walk, talk, make a decision, or even sign his name. In the next 24 hours we had a complete turn around. About lunchtime today, he became talkative, asked questions, kidded with the nurses and complained to me. He had a brutal day with test after test, never took a nap, but was somewhat alert and more involved with his illness. I want to know who was praying at lunchtime on Thursday, because you (they) must have a direct line with the Lord. It worked!

This weekend we are having company. Kari, Jeff and baby Andrew. Janine, Don and Maggie. And because of the generosity of a friend from Pennsylvania, Bill’s 93 year old mom and 2 sisters are flying here. It will be a busy weekend. I must add that between our church friends, bridge friends, and special friends, they have prepared meals, stocked the refrigerator, cleaned the house, and are picking up the air travelers at O’Hare and Midway. I can just watch over Bill. Once again, I am overwhelmed by the generosity of everyone, and their desire to help when we are into the 5th month of Bill’s illness. Thank you.
I will post again after our busy weekend.

“The lord says, I will rescue those who love me. I will protect those who trust in my name. When they call on me, I will answer, I will be with them in trouble.” Amen

February 26th- The Sound of Music

After church on Sunday 10 members of the Grace UMC Praise Team came to sing TO Bill, and ended up singing WITH Bill. Bill was in his element. His first love, music. There wasn’t a dry eye in the house, except for Bill. He sat up straight, found his music and joined them. For over one hour our home was filled with Praise music. It was a blessing for all of us.
Wednesday morning we meet with the doctors at University of Chicago Cancer Center to discuss the clinical trial and if he can participate. It would be our little miracle. I won’t be driving into the city because friends have arranged for a driver to pick us up and bring us home. What a blessing.
Bill wakes in the morning feeling good, and fades in the evenings. Kind of like most of us old folks. He can’t wait to have some energy back.

“Father, If you are willing, take this cup from me: yet not my will, but yours be done.” Luke 22:42

February 23- What's next?

Bill is doing so well….considering. Bill is not in any pain, nor is he on oxygen. Just so you know, at this time he does not read the blog. I, on the other hand, try to check it twice a day, and thank you for your loving thoughts and endless prayers. You give me strength.

The Northwestern clinical trail is closed. That means the pharmaceutical company has pulled the drug, and stopped the testing.
Our doctor directed us to a clinical trial at the University of Chicago Cancer Center that is specifically for leukemia patients. We have an appointment on Wednesday with the doctors there and they will determine if Bill is a candidate. Time is of the essence.
Jon and Laura are here this weekend. It will be wonderful to have their support and to just be with them.
Nurse Nancy is lifting all isolation rules for Bill. He is still Neutropenic (susceptible to infection). If you are not sick, please come by. He is slowly recovering from the last chemotherapy treatment in early January, but the leukemia is taking over his body. Come sooner rather than later if you want to visit.
Love you all. We are now praying for that miracle.

Letty and Steve sent a card with these words:
May you have strength at your backdoor, so you have it when you need it…
May you have courage in your pocket so you know where to find it…
And, always, may you have hope in your heart, so you never misplace it.

February 19th- Hills and Valleys

We are back down in a valley. Bill did not get good results on his bone marrow biopsy. His bone marrow was 45% Leukemic blasts. We are now working on the next step. We are gathering information on a clinical trial at Northwestern University Medical Center that might accept him. Bill needs to decide if he wants to be involved with this study or just stay at home. As we pray and work through these options we know you will support us.

February 15th- A little improvement

And we will take a little improvement. His white cells have improved on Thurs and Fri just 200 points, but at least they are on the way up. Red cells and platelets are hanging in there. This was a big day for Bill at the cancer clinic. He had the bone marrow biopsy, an injection of chemo into his spinal fluid, and platelets. He broke out in hives while receiving the platelets, and of course, I caught it happening. The nurses think I’m overprotective when I watch him constantly when he receives platelets, but now they know why. He came home and slept for 3 hours.
I will know by Tuesday the results of the bone marrow biopsy, and maybe what our next step will be. (Or at least an appointment date to talk about the next step). Remember, Bill has to be in remission and in good health to even do a bone marrow transplant.
Janine, Don and Maggie come to visit this weekend. Hopefully they will bring a smile to Bill’s face.
Thank you for your prayers and support. He seemed to turn the corner on Thursday. “Coincidence I think not.”

February 13th- Calling in the troops

Bill is having a medical issue where he is just not making blood. His white cells, hemoglobin and platelets are just not multiplying. Each day since he has been home, the numbers have gone down just a little bit. They should be multiplying. His body is just wore out, and the bone marrow is tired. On Friday the doctor will do another bone marrow biopsy to see what the Leukemia blasts count might be in his marrow. It will be next week before we have the results.
If the blast count is high (over 5 %) we have a problem. If it is under 1 % he is ready for a bone marrow transplant. Any number in between, we have some time.
We need your help to let the Lord know we have a priority customer here who needs his help. Let’s send out this prayer to the only one who has any control over our bodies.
May His will be done.

February 9th- Seattle Trip Canceled

As much as we want to visit the Seattle Cancer Center, it won’t happen this month. Bill is not well enough to travel. His blood counts have not recovered as quickly as we had hoped and he is still anemic, neutropenic, and low on platelets. Plus, he is very tired, sleeping about 18 hours a day. The doctor said he is doing as well as a 20 year old would do after 4 rounds of chemo. I’m sure Bill doesn’t feel like a 20 year old right now.
The doctor is giving Bill this week to recover. The following week Bill will have a bone marrow biopsy to determine if his bone marrow is “clean”. With good test results and an improvement in his health, he will be one step closer to a transplant.
Our prayers this week are for Bill’s improved health and appetite. He lost another 15 pounds with this round of chemo and 4 ½ weeks in the hospital since January 2. But, tonight, he got the “clean plate” award eating meat loaf and baked potato followed by ice cream, his favorite dessert right now.
Your prayers hold us up and keep us going. Thank you.

February 6th- Transplant status

First off…BILL IS HOME!!!! Sleeping in his own bed and watching TV on the couch.
His blood has recovered and bone marrow is doing it’s thing. It is GREAT to have him at home. Company is welcome for short visits (15 min) because rest, healing, and staying healthy are the most important goals right now.

I have been in contact with the transplant coordinator. It takes 4-5 days for the extraction process. Our 26 year old male donor, if he lives in the United States, is going to be given a choice of 3 dates to come to Loyola. If he is from the International Donor Pool, then the extraction of bone marrow will be done in his home country. A transporter will fly to Europe and bring back the bone marrow in a cooler. Even our doctors do not know who the donor is, or where he lives. We will find out his name one year after the transplant.
In the meantime, Bill needs to be in remission and good health for all this to be placed into action. The coordinator says we are looking at about 6 weeks from now. That would put this procedure at the end of March. But, remember, we are on hospital time.

Our church family and Questors Sunday School Class, have jumped right back into action. Dinner is being brought to us almost every night, and transportation is being provided to the airport next week when we go to Seattle. Everyone that is helping with just one thing, adds up to a whole lot of help for us. Thank you, we are blessed.

Please pray for Bill’s recovery of strength. And a parting of the clouds next week to allow for easy air travel. Chicago has had it’s share of snow and ice this winter, and airport cancellations. Thank you for your prayers.

February 3- Quick Note

Bill's counts are going up, blood work is improving, and his bone marrow is making neutrophils. He should be home by Tuesday. Amen. We are both ready for him to be home.

January 31st- The Waiting Game

Bill is still in the hospital, just waiting for his bone marrow to make white cells. He has had 15 Neupogen shots in his tummy over 15 days and his white cell count is still below 600. His ANC is still zero. He hasn’t had a fever for days, and walks the halls about 3 times a day. He is so ready to come home, but not yet. He has been in the hospital since Jan 13th. The doctors are pleased with the improvement in his health this week and say we just have to wait.
I’ve contacted our bone marrow coordinator at Loyola and told her we are ready to proceed. She said Bill needs to be in remission and will need to come in for more testing, ie: EKG, x-rays, and an evaluation to decide if he is healthy enough to endure the bone marrow transplant and full body radiation.
She mentioned that the second donor was also a 9 out of 10 antigen match, but was 48 years old. They would prefer the 26 year old as their first choice. She said this man may be from the USA or an International donor. Even if she knew, she could not tell me. The preparation for the transplant takes about 2 more months.
We have rescheduled our Seattle trip for Feb 11th. If Bill’s health is good, we will still go to just check it out and get their opinion. This way we will have a backup if something falls through here, or have future options for a second transplant down the road. At this time, we just need to move things along.
Our prayers today are to give Bill’s body the strength to make the good white cells that will make his bone marrow complete. I know your prayers will help. Amen.

January 27th- Bone Marrow Drive at Church

The Bone Marrow Drive at Grace United Methodist Church, in honor of Bill, was very successful. I wish he could have been there with me, to personally thank the members of Grace UMC who are willing to make the commitment of their bone marrow to save another. There were also other members who supported the program with cash donations to help pay for the testing for those who could not. It was Pastor Bob Atkins and our Parish Nurse, Pam Riley, who organized the drive with LifeSource Blood Bank.
I don’t have an exact count yet, but it looked like there were close to 50 envelopes with DNA samples ready to go to the labs. Wouldn’t it be the intervention of God if one of these samples was a match for an adult or child, and this was the drive that was needed to find that match. Amen

Concerning Bill: His blood work has been up….then down… and now going back up. But in baby steps. Each day is a new adventure. He is very weak and I can’t wait to get him home and fatten him up and let him sleep all day and night. Today begins his third week in the hospital. The latest results of spinal fluid testing done on Thursday show no Leukemic blasts. Amen. The latest brain MRI done on Thursday looked very good to me. (The doctors roll a COW- computer on wheels- into the room, and we get to review all tests.) But, I’m not a doctor, so I’ll hear what they have to say on Monday.

God was with us today.
It “just happened” that a young man visited our church today because his friend’s girlfriend wanted to hear our amazing choir perform before she left town. He had a bone marrow transplant done at Loyola University Medical Center 6 years ago. He had an Ommaya Reservoir in his head, like Bill. He was a survivor and pleased with his treatment at Loyola. So, is this a sign from above that I should listen to?
This has been a very humbling day for us. We appreciate the support of our church family. Bless you all.

January 23rd- Birthday Celebration

Bill awoke on the morning of his birthday with no fever. His voice was a little stronger and he seemed to have “turned the corner”. I arrived at the hospital with a birthday balloon, cupcakes, and a sack full of cards and gifts. The nurses were waiting for me. They had a small cake from the hospital. With fifteen ladies packed into his very small private room, they sang “Happy Birthday”. Bill smiled from ear to ear. The nurses had arranged a manicure and hair trim for him. This coal miner received his first ever manicure for his 59th birthday.
The picture was taken 5 minutes before his world fell apart.
Bill was receiving platelets while they gave him a manicure. He began shaking and had this desperate look in his eyes. I’m running for the nurse, the manicurist and hair stylist are getting more than they bargained for, and Bill was having an allergic reaction to the platelets. It took about 15 minutes for the Demoral, and steroids to do their job. Bill then slept for 4 hours. He hardly remembers the rest of the day.
On Tuesday, we started all over again. It was a much better day. Bill awoke a little stronger. We opened birthday cards and gifts. He actually got out of bed for the first time in 10 days and walked the hall. The nurses made a big fuss when they saw him walking the floor (they all love him). Bill still has not had a piece of birthday cake because he isn’t making saliva when he eats. So, ice cream is good, but not cake.

Today, Wednesday, they tried platelets again, and there was NO reaction. Amen.
The doctors had told us several days ago that his fevers were caused by a staph infection. Once the antibiotic cleared up the infection, they were going to remove the PICC line, (the tubing that runs from a catheter in his arm to his aorta). His blood cultures came back good. His fever is gone. And the PICC line was removed today. They replaced it with a Power PICC! We’ll see what new and improved wonders this new line will provide.
This evening Bill again walked the hall. He seems a little stronger, but his blood work is still going up and down, and his ANC is still zero. It needs to be 500 before he can go home. Today he received his 7th Neupogen shot to increase white cells. So the numbers should rise any day. Back in September he only needed 4 Neupogen shots to get those white cells dividing. His body is just “wore out”, as they say in Kentucky.

I am hoping the next few days will be uneventful and will let you know when he is home again and feels like phone calls.
This evening we are praying for the physical, mental, and emotional strength it takes to build bone marrow for the fourth time. If anyone can do it, Bill can, with a little help. Amen.

January 18th- Still Fighting Fevers

I was too quick on Wednesday to report Bill’s fevers were over. By the time I arrived at the hospital, the fever had returned and we have been battling high temperatures all week. After blood cultures, more x-rays, CAT scans, etc, the doctors found no major cause. They just changed his antibiotic and anti fungal drugs and that seemed to help. At least his temperature can be controlled to less than 103 degrees.

Good News: Bill had a bone marrow biopsy done this week and the results were great. It is not only CLEAN of “blasts”, but the reading was “less than 1% leukemia cells.” His spinal fluid was also clean of leukemia cells. This will hopefully give us a few weeks without cancer and he can gain some strength back.

Because his bone marrow was “clean”, the Neupogen shots (white cell builder) began on Thursday. He gets one injection a day for 5 days. In the next 5 days, we will see an increase in his white cells and ANC and he will be able to come home.

Our church, Grace United Methodist Church, has organized a Bone Marrow Testing Drive in honor of Bill. On January 27 from 9am until 11am representatives from LifeSource will be doing DNA cheek swabs for those who would like to have their name placed on the National Bone Marrow registry. What a wonderful gift this will be to a cancer patient, adult or child, who cannot fight their disease alone. If you live in the area and want to be tested, there are two major criteria. You must be healthy, and between the ages of 18 and 60 years old. That eliminates most of MY friends. Bill is the third member of our congregation to get Leukemia in the past 5 years. Our congregation understands the need.

“Sometimes the path to healing is not an easy one, but the Lord is walking right by our side. His hand will be within your reach. He’ll guard your every step. His love will light your way and be your guide”. Thank you Kim and Tom for the card with that verse. We need a bright light and a tight hand to hold on to right now.

January 16th- Back in the hospital

Bill is back in the hospital. He has a neutropenic fever, which means, without white cells, a fever is the only way to fight even the smallest infection. We went to the hospital on Sunday morning, and by Tuesday the fever was under control. There does not appear to be any serious cause to the fever, but never the less, he must remain in the hospital until his white cell count and ANC (Absolute Neutrogen Count) have recovered. This count is a reading of the good white cells in your blood. Bill will be in the hospital for 10-14 days. (Bummer, we like it better when he is home.) At the moment, Bill does not feel up to phone calls. Sleep is the best medicine.

We have no new news on the donor situation. A bone marrow transplant is a slow process of coordination of donor, hospital, doctors, and Bill’s health. As Carol, a friend from Kentucky said. When we all get really frustrated with God because things aren’t happening…..we need to pray a little louder.

On a lighter note….Bill will be celebrating his 59th birthday on Monday, January 21st. He will still be in the hospital. If you would like to send a greeting by a blog message, e-mail, or card,I take the computer to the hospital everyday.

Bless you all for walking this walk with us. It is truly “hills and valleys” We all rejoice on the hill tops, and your support makes the valleys bearable.

January 11- One Step Closer

We have a donor!!!
Out of the three potential donors, a 26 year old male has stepped forward. He is a 9 out of 10 match. This means his HLA (human leukocyte antigen) typing is a close match. Plus, being male, and young. and hopefully healthy, are all a plus. We don’t know anything else about him at this time, but when we do, we will let you all get to know him.

A second donor has come forward and the hospital just received his/her blood sample. So we might know more next week.

The third potential donor has not been located.
The hospital has also placed on hold 3 cord blood units that will work for Bill. Seattle Cancer Center in 2007 had outstanding success with clinical trials using cord blood units. This also might be an option.

Everyday Bill’s HLA typing is entered in the National Marrow Donor Program search, and each month over 25,000 new donor names are added. We may have choices before the process is finished.

Our daughter Janine, who is on the donor list, said, “I hope my HLA is a match for someone. I would want to make another family feel as happy as I do right now”.

Our prayers: Thank you Lord for people who are willing to give the gift of “life” to a stranger.

Other exciting news: Jon and Laura have just announced that she is pregnant!!!! Our next grandbaby is due in July.

January 8th- Just an Update

Bill came home on Sunday. His blood work is just a little below normal. He is very tired and is taking a much need nap. But just two days ago he was on the treadmill and walking around the block. His energy level can drop so quickly.
The last round of chemotherapy did it’s job on the Leukemia cutis. The rash is just about gone and we hope we don’t see it again for a few weeks.
Today, Bill received another injection into the Ommaya Reservoir (the port on the top of his head), and will receive another on Friday. This chemo injection is keeping the blasts under control in is CSF (Central Spinal Fluid).
We have temporarily canceled the visit to MD Anderson Cancer Center in Houston. The doctor thinks it will be too soon for him to travel. But we are all booked for the Fred Hutchinson Cancer Center in Seattle for January 30th and 31st. Returning home on February 1st. So far they have been wonderful to work with.
I hope to have some information on a potential donor real soon. The bone marrow transplant team meets on Friday and they have indicated there may be some news. I hope they will share this news with us.
Please continue to pray for Bill and his potential donor. I know the Lord is listening, we just have to remember who is in charge.
Love you.

Three Down / Two To Go

So far I’ve completed three days of chemo and have two more to go. I still feel very good and have not experienced any side effects to speak of. I am anticipating feeling good until early next week when my nap time should increase as my blood counts decrease. However, I am going into this chemo session in better shape than the previous sessions so maybe I won’t feel as tired.

Still no word on a marrow donor so keep praying that one shows up.

We wish everyone a healthy and prosperous New Year.

Bill

January 1st- Chemo Round Four

HAPPY NEW YEAR!

“They didn’t want to do it”, but the cancer is back and the doctors are once again using an aggressive approach to keep it under control while we wait for a bone marrow donor. His chemotherapy treatment will be another Introductory round (his third- you are only suppose to have one Introductory round) of the drugs Mitoxantrone and Etoposide (also called VP-16). Treatments will begin January 2, and will last for five consecutive days. White “blasts” were found in his bone marrow, only 9% blasts, but that is 9% too many. Bill should come home Sunday or Monday and will be back in ”Nurse Nancy” isolation for 2-3 weeks.
Bill’s previous chemo treatment was November 4th. For the past 2 weeks he has felt almost normal and we have enjoyed getting out, going to church, and being with friends and family on a limited basis. We even “partied” with friends on New Years Eve, even though we were home by 9pm. Bill says he feels better now, then he did in August. He has also gained back 8 lbs of the 30lbs he had lost early on.
Bill has just one prayer request. LORD, WE NEED A DONOR. AMEN.