December 28th- Here we go again

Christmas was wonderful, the grandchildren were a delight, and it is always special to have our family and their spouses all together. But, now back to our reality.
The Leukemia Cutis (the cancer skin rash) has returned. Remission was short lived. Chemotherapy will be used to control his cancer, and it will be another strong (Introductory) round. Today, at the clinic, Bill had his 5th bone marrow biopsy procedure and a skin biopsy of the rash to verify their diagnosis of cancer.
The good news…...his blood work was “normal”. The white cell count was normal and no leukemia white “blasts” were in his blood. This is really good news. The bone marrow biopsy will tell us if there are any leukemia blasts in his bone marrow. Bill says he thinks his bone marrow is clean of blasts. This is one time I would like him to be right.
Bill goes back to the hospital on Monday for an ultrasound of his liver, which is under stress from the chemo treatments. Apparently, the liver filters the chemo into your system. They want to make sure his liver can handle another round of chemo, and more transfusions of red cells which would follow the chemotherapy.
We have scheduled appointments at the end of January at MD Anderson in Houston, and Fred Hutchinson Cancer Research Center in Seattle. Both these facilities will do a 50 percent match on a related donor, and one of Bill’s sisters is a 50 percent match. Our children and their spouses were all tested over Christmas and it will be interesting to see if they come up in the donor pool as a match. They are proudly displaying their donor cards for the picture.
Your prayers are still needed. Bill needs a bone marrow transplant to survive. His blood (white cells) cannot fight this cancer.

Pray for the doctors and their care of him.
Pray for strength for Bill, mind and body, to keep up the fight.
We thank the Lord for each new day. Amen

December 21st- Chemotherapy delayed again

Bill is acting more like himself each day. For example, he is challenging my opinion, telling me how to drive, smiling, just feeling better, and I love it. His body and mind are finally recovering from the Nov 4th round of chemo. Amen.
We visited the cancer clinic today and the injection into his spinal fluid has been delayed until next Friday. His next round of Consolidation chemo is rescheduled for the first week of January. The doctor wants his body to recover another week. Without chemo, he is going to feel almost “normal” by the end of the month.
Bill actually went to work for a couple hours on Wednesday and Thursday this week, and he plans to go back next week also. He even went Christmas shopping for me. Since he isn’t allowed to go to a mall, I just dropped him off in front of a jewelry store and told him I would be back in 20 minutes. It worked. He was carrying a small package when I picked him up!
We are scheduled to visit MD Anderson Cancer Center in Houston on January 22, 2008. This will be a week long consultation and exam. They have already agreed that Bill is a candidate for a transplant, but want to confirm that he is healthy enough to survive any complications.
We have decided once again to pursue Fred Hutchison Cancer Center in Seattle. They are doing some clinical studies there that pertain to Bill’s situation. An interview date has not been scheduled.

Our prayers are still for a bone marrow donor to become available. In this season of Christmas we know miracles happen and prayers are answered. Amen

December 15th- A little break from chemotherapy

We are so thankful. Bill will receive his next round of chemo on December 26th. This allows our family (children and grandchildren) to come for Christmas and takes away the guesswork on whether Bill will be home or in the hospital. He is feeling a little better each day, but his hemoglobin is still in the anemic range, so he is tired.
No word on a bone marrow donor. We won’t have any information until January.

So, we are now getting ready for company. Kari, Jeff and Andrew fly in on Friday night. Jon, Laura, Janine, Don and Maggie arrive on Saturday. It will be a quick visit, but we will enjoy every moment. I’m sure the snow we have now will still be here for a week. Therefore, we should have a White Christmas.

Keep praying, for Bill and his potential donor. There has to be someone out there.
Merry Christmas.

December 11- Looking for a donor

First off, Bill is doing really well (as well as can be expected). This means he is conversational and wants to talk on the phone, do computer work, and venture out of the house and exercise about 10 minutes a day. We go back to the cancer clinic on Friday and will find out when the next round of Consolidation chemo begins. This round will not be as strong of a dose and is more of a maintenance dose of chemo. But, we are told, each round of chemo will take him a little longer to recuperate and get back to “normal”.

We now know that in the National Bone Marrow Donor Bank, three matches have been found. They are trying to locate these potential donors and see if they are still willing to contribute their bone marrow. If they can locate them (sometimes people move, or change their minds) the next step will take about 3 weeks.

In the meantime, Bill and I are visiting the local hotels near the hospital to see where we will want to live for our 100 days of isolation. We must be within 20 min of the hospital and our home is 45 minutes from Loyola if it is not rush hour.

We are also working with MD Anderson Cancer Center in Houston to learn more about their program, and will possibly visit them in January. This is for a second opinion and just to compare what is offered in Chicago verses Houston. We wanted to also check out Fred Hutchison Cancer Center in Seattle, but a third choice is becoming overwhelming.

Our prayers for Bill
Pray that his cancer stays under control while waiting for a donor.
Pray that a donor can be located and God will guide them in their decision to help.

December 7th- Sisters are not a match

As Bill said, “Nothing has been easy so far, why should this be easy.”
The doctor’s next step is to contact the National Bone Marrow Donor Association. They first find “preliminary” matches, and then do further testing to see if they are an exact match. This process has begun.
If you would be interested in being tested, call your local blood bank, and see if they do Bone Marrow Screenings. It takes about 1½ hours to give platelets for this test. Your sample would then be put into the system and it could be a match for Bill or someone else. in the Chicago area, LifeSource does this blood draw.
It usually takes 3-6 months to find a donor. Bill will need another round of chemo to control the cancer. Our next doctor’s appointment is Dec 14th. I’ll have more information then. Hopefully we can stay out of the hospital between now and then.

November 6th- No News

Can you believe it? The results for bone marrow matches are not ready. But in the same breath they say "We'll move as quickly as possible when we know something."
Bill was not given another chemo injection into his spinal fluid. They want to wait another week.
His blood work showed his white cells and platelets are doing great...his hemoglobin is still catching up, but improving (10 is his number- 14 is average). That explains why he is still tired. The doctor is hoping Bill does not need another round of chemo before the transplant because it is taking him so long to recover from the last round. Another round would be hard on him.
I will make an announcement as soon as we have some information.

November 5- Tomorrow

Tomorrow is our appointment with the doctors to talk about Bill's donor availability. More information will follow then. He also will receive another chemo injection that day.
Bill is still recovering. No fever on Tuesday, thank goodness. Maybe we have turned that corner. Doctor said when your bone marrow is rebuilding, it will sometimes cause a fever for a few days. Bill is still very tired.
It snowed a few inches last night. When we woke up this morning, our driveway was plowed and the newspaper was by the porch. Our neighbors are so good to us.
Please pray for encouraging news from the doctors on Thursday.

December 1- Fever that won't quit

Just when you think things are getting better… something else comes along. Not major, but Bill had a low grade fever on Friday, plus some other minor issues, so we were back to the cancer clinic to be checked. Dr Shafer must have jinxed him on Friday when she complimented Bill on managing to get through a tough regiment of chemo, and not being back in the hospital with a fever.
On Saturday morning he had a 100.2 temperature all morning and early afternoon. When his temperature reaches 100.5 we are to let the doctor know. By UT kickoff time his temperature reached 100.4. I called the doctor and we were headed to the emergency room. Of course, we waited for the snow and ice storm to arrive in the area to make our trip more interesting.

Good news- Bill is home.
Good news- It is nothing major and antibiotics will take care of it.
Good news- The ER room had a TV set and we saw most of the game.
Good news- Our car was covered in a thick layer of ice when we got home, but thank goodness, the roads were salted and we arrived home safely.

Bad news- Tennessee lost to LSU.

Bill’s blood count numbers have improved. Now his body needs to heal. He will be taking it easy again this week. Please pray that he gets get stronger each day.

November 27- Say Good-bye to Brain Cancer

We have the official word from our doctor that the Leukemia cells in his brain are GONE!!! Even the cluster of cells in the membrane along the frontal lobe and two small clusters at the base of the brain, that were a huge concern, have been destroyed. AMEN! The chemotherapy again is doing it’s job, and I’m sure your prayers have speeded things along. Bill does not have to go back for a chemo shot to the Ommaya until Thurs a week.

Bill’s blood counts are rising daily. He is still very tired. It must take a lot of energy to make bone marrow and blood. But each day is getting better. He should be ready for the SEC Championship game on Saturday afternoon.

I probably won’t have any news for several days. But remember, “No News is Good News.” I will let you know the results of his sister’s blood tests as soon as I get the word. That will probably be on December 6th when we go back to the Cancer Clinic.

Caring is all around us, thank you for your love and prayers.

November 25- Doing better

Just a quick note to say our prayers have been answered again.
Bill is no longer experiencing double vision. It stopped as quickly as it had started and seems to be chemo related. Football is a lot easier to watch when only one quarterback is throwing the ball.

His body is making white cells and platelets again, and the red cells should catch up this week. He hopefully will be feeling much better by this weekend. We are headed back to the Cancer Clinic on Monday for another chemo shot and to meet with the doctor. If there is any new information, I will share that with you Monday night.

I don't know what was better this weekend.
Bill's vision healing
Turkey dinner with Janine, Don and Maggie
OR THE TENNESSEE VOLS BEATING KENTUCKY!!! What a game!!!

GO Big Orange.... Beat LSU!!!!

Thanksgiving Day

Now what are you doing on the blogsite!!! It’s THANKSGIVING!!! But since you must be really interested in keeping up with Bill (or totally bored with food and football) you get to read the latest scoop.
Bill has just returned home from an unexpected trip to the hospital. He woke up Wednesday morning with double vision. After a call to the doctor, we were driving to the emergency room. Not an “emergency", but the ER is equipped with an “isolation” room for their cancer patients. Tests and medical treatment can be administered quickly from the ER verses being admitted into the hospital.
After an MRI of his brain, the neurologist determined that cancer was NOT causing his vision problems. This was great news. In fact, we were told, his MRI looked terrific compared to his pre-Ommaya Reservoir MRI. More good news. Our hematologist-oncologist also said Bill’s CSF was clean on the latest extraction, so the doctors are puzzled on what is causing this eye malfunction. They are guessing it is chemotherapy related.
We will be scheduling an appointment with a neurologist/ophthalmologist if it continues. It does come and go, so we will be recording his routine to see what might affect it. They kept Bill overnight to observe him, and he was glad to come today.
So we will be doing hamburgers for our Thanksgiving Day dinner. And are still hoping to see Janine, Don, and Maggie over the weekend for our Turkey Day. As always, we take one day at a time.
Happy Thanksgiving. And thank you for your Thanksgiving prayers on Bill’s behalf.
Nancy

November 19th- Gratitude beyond belief

As the holiday season is upon us, we would like to thank those who have supported Bill through his journey with cancer. Your phone calls, cards, e-mails, and blog messages give both of us the boost we need to sometimes make it through the day (and night). We have not been able to personally thank many of you who have donated to the Leukemia Research Foundation, because we do not know who you are. But, please know that we are very grateful for your support.

You have logged on to get the latest on Bill, so here goes. His blood count is still extremely low. The home health care nurse came by to give him platelets and two bags of red cells. That took about 3 hours and he is doing much better this evening. (Plus he has Monday Night Football to watch this evening.) We are still waiting for the Nulasta shot to kick in, and for his blood numbers to begin to rise. We think this will happen by Saturday. But who knows.
Janine, Don, and precious Maggie will be coming here on Friday and we will celebrate Thanksgiving on Saturday. We have so much to be thankful for in all of this craziness, and you are on the top of our list.
Bill’s sisters, Paula and Gail, had their blood draw this morning in Pennsylvania. The sample will be over-nighted to Loyola Hospital and we should have the results in 2 weeks. If either are a match and they agree to donate their bone marrow, we will proceed quickly.
Happy Thanksgiving to all of you. Count your blessings, as we are counting ours.
Bless you all.

November 15th- Another day, Another chemo injection

We were back to the Cancer Clinic at Loyola today for Bill’s 6th injection of MTX into his Ommaya Reservoir. He does great with this injection, no side effects. The doctor said Bill looks great, considering the chemo regiment he endured last week. It is wonderful to hear to doctor say “You look great” when you are wondering how you are doing and just what is “great”.
Bill’s white cell count is way down. It is 200. The lowest it has ever been. So, no visitors are permitted past Nurse Nancy. His platelets (12,000) and hemoglobin (7.6) are also low. He will receive platelets and red cells at home on Saturday from the Home Health Care nurse. Bill is feeling okay, and enjoys your phone calls. As much as we would enjoy seeing everyone, Bill cannot have visitors at this time.
We are anxiously awaiting the results of the blood tests of Bill’s two sisters to see if there might be a bone marrow match. All future plans for chemotherapy treatments and bone marrow transplant will be influenced by those results. He will continue to have the MTX shot on a weekly basis until he has a BMT.
You know what our prayers are this week. We need someone to be a bone marrow match. And if one of his sisters is a match, it will be so much easier on Bill. Amen.
(And I know if his mom at 92 years old could have another child, she would do that for Bill. Love to hear your comments on that one.)

November 13- What next?

Our meeting with the Bone Marrow Specialist was anti-climatic. We had all done so much reading on the subject we knew the procedure and the risks and were given very little new information. The doctor did confirm that if Bill wants any quality of life, he needs to proceed with a transplant.
Answers to your questions.
Is Stem Cell Replacement and Bone Marrow Transplant the same thing?
Basicly, yes. A Knoxville friend, Shannon Eaker, who has his doctorate in stem cell research, may correct me. One is from the bone marrow, and the other is from the umbilical cord. But they both involve chromosomes and what Bill would be given. With the quanity of marrow needed, stem cells would not be enough.
Can anyone be tested?
Yes, but his best match to avoid Graft vs Host Disease (GVHD) is a sibling. Our insurance will pay for a sibling test only. This is a blood test and packets are being sent this week to Bill’s two sisters. Anyone can add their name to the Bone Marrow Bank list. One would go to their local blood bank to be tested and their type recorded. It is best if one is under 40 years old.
What is a “match”?
To make this as simple as possible (the only way I understand it), we all have a HLA type, or human leukocyte antigen. This tissue type consists of proteins on the surface of the cells and the better the match on antigens, the less chance for rejection. Our HLA results are a combination of our mother and father’s chromosomes. We want as close a match as possible so his body doesn’t reject the new bone marrow, or visa versa (GVHD). But, on the other hand. We want a little bit of a rejection so his new white cells recognize the mutated white cells as “foreign” and destroy them. (Something his white cells are not capable of doing right now.)
What if his sisters aren’t a match?
All three hospitals we are considering have access to the National Bone Marrow Bank and the International Bone Marrow Bank. Fortunately, Bill is of Western European heritage (German/Italian). It is the easiest group to find a match. This is because for centuries, these cultures have been intermarrying. The doctor said Bill picked his parents well.

Send me your questions and I will do my best to answer them. Or, I will ask the doctor.

About Bill. His blood count numbers are dropping today, as they should. He is tired, but feels pretty good. Home Health Care came this morning to draw blood for a CBC reading and will come back if he needs platelets or red cells. He received his Nulasta shot on Monday and it will take 2 weeks for his blood to return to normal.
Jon and Laura are still here. Jon and Laura finished the outside work to get us ready for the winter season. Everything is put away, and leaves have been raked again. Laura has been cooking dinner and helping around the house. It has been wonderful having them here.
Thanks for your prayers. We will stay in touch.

November 10- Third round of chemo is going well

Bill is doing so well. The doctors are controlling nausea and other side effects of chemo with medications. He is walking the halls of the hospital, reading, and eating 3 meals a day. Ever since Bill has had the Leukemia controlled in his spinal fluid, he has been a different person (for the good). Nothing seems as bad, to me, as the first 2 months. And, I might add, he has no pain. Amen.
We learned yesterday that Bill has a very aggressive form of Leukemia. We may not have an option on whether or not to do Bone Marrow Transplant. Our choice is only where to have it done, and as soon as possible.
Bill’s bone marrow biopsy on Wednesday was “CLEAN” again. That is good news, but it is only a matter or time (weeks) before the mutated white cells will grow again.
That is what happened after the first round of chemo when his shin broke out in the Leukemia Cutis. (Which is now healed because of the type of chemo he is taking.)

His eighth and last dosage of chemo begins at 2am Sunday and ends at 6am. He will be home again Sunday afternoon. Phone calls are encouraged. Healthy visitors are welcome until his white cell count drops. Just call and ask.

Monday at 4pm CST, we will meet with the Bone Marrow Transplant specialist to discuss our options, and the treatment plan at Loyola University. Jon and Laura will go with us to ask questions and gather more information. It will be a big day for all of us, so if you happen to think of us, just shoot a prayer our way.

God Bless.

November 7th- Third month of Chemo

Bill has been feeling so good, we hate that chemo has to begin again.
He began the day with his fourth Bone Marrow Biopsy. He says "No big deal, I'm getting use to the procedure".
Then chemo began. Three hours later the drip was finished and no side effects. He will get a 12 hour break, and the next dosage will begin. This will continue until 8 doses have been given. Each dose is stronger than the one before. He hopes to be finished and come home on Sunday.

While Bill is still feeling good, we took the opportunity to tour the Bone Marrow Transplant wing at Loyola Hospital. The nurses answered our questions and told us about the facility, the head doctor's requirements of his patients and support groups available to us. They do about 100 transplants a year at this facility. Monday we will be meeting with one of the doctors to have more questions answered.

We were blessed today with a surprise visit from Jon and Laura. Jon had work to do in the Chicago area, and Laura came with him. Jon is going to stay in town for the Monday consultation with Loyola's doctors.

Bill has made so many improvements over the past month. We need to pray for continued improvements to his body, and the destruction of the leukemia cells. With a miracle, maybe he won't need a bone marrow transplant.

November 3- Events of the weekend

Bill is dong well.....considering all that is going on.
Friday he received another chemo injection to the Ommaya Reservoir and had no side effects. Amen. He will have about 3 more of these injections this month, once a week.

Bill goes back to Loyola Hospital on Wednesday for 4-5 consecutive days of chemo treatments. They told him this will be very intense and they will monitor him closely. He will stay overnight for this coming session. Recovery will be at home and it will take 14-20 days for his blood counts to return to normal. He will also receive a bone marrow biopsy this Wednesday to review the mutated white cell count in his bone marrow. This is because of the Leukemia Cutis rash that had developed on his body.

We are getting ready to make the decision on a bone marrow transplant. Not only whether or not to do it, but at what hospital. We ask for your prayers this month. We need guidance from the Lord to make the right decisions, acquire the knowledge needed, talk to the right people, and have doors open for us. This is a tough decision, and I'm asking Jon (our son) to join us during the information gathering process.

On a lighter note. We had a wonderful visit with Kari, Jeff and Andrew. Bill was having a good weekend, and having a baby in the house is delightful. Jeff was a wonderful help getting the patio furniture put away for the winter, raking, mowing, and cleaning gutters. It was a great weekend to work outside. Jeff works for food if you need him.
I'll write again in a few days. We are hoping for an uneventful week.

Easy week

Just a quick update to let you know Bill is really having a good week, in moderation.
I dropped him off at work on Tuesday, for what was suppose to be one hour, and he wanted to stay 2 hours. The visit was wonderful for his well being. And he really enjoyed seeing his work friends.
Visitors came by on Wednesday. Church friends, as well as Sponge Bob, witches and goblins.
Tonight Kari, Jeff, and baby Andrew arrive, and Friday we go back to the Cancer Clinic for chemo injection into his spinal fluid.
This weekend is Kari's 30th birthday. (Our "baby" is 30!!) Been a long time since I have baked a birthday cake, but I am up to the challenge. No store baked cake here!
Jeff has offered to help with some of the fall cleanup jobs around the yard. I am going to take him up on that offer. Hope he brings a warm coat, the weather has turned cold.
Thank you again for your interest in Bill's illness and his well being. We are all players in the fight for his life.

Chat Room Monday- 7:30pm Central time

Yes, That would be 7:30pm CST at this house- 8:30pm EST for the rest of you. I don't think anyone reading the blog is on Mountain or Pacific time. But I'm sure I will get corrected if I missed someone. Nancy/Mom

Chat room- Monday at 7:30pm

Bill is home this week. His blood count numbers are rising and he feels pretty good, relatively speaking. He would like you to join him on the Chat room site tonight at 7:30pm. See you then, and yes you can do it. I don't want to hear any excuses. Jon made it easy.

For our Grace UMC friends. Bill will not be in church this Sunday because they are giving flu shots. That is an active virus that he does not need right now.
If our local friends have time to stop by, this is the week to do it. When his immune system is at it's best. Call to check on his "napping" schedule.
Kari, Jeff and baby Andrew will be visiting from North Carolina on Friday and Saturday. It will be a busy weekend.

I probably won't enter another blog until next week. It will hopefully be an uneventful week. For those who were concerned about Bill's skin, Leukemia Cutis, it is looking very good. The chemo did it's job there.
Your support has meant so much. Bill is surrounded by your love. Bless you.

October 26th- Good New, Bad News, Good news

First off, we arrived at the Cancer Center at 11:45am and were finished at 5:25pm. The winner of the “Bill Huber blog site Loyola Cancer Center treatment schedule predictor” is our daughter, Janine, at a predicted time of 5:22pm. Congratultions! We left the center just in time to hit Friday rush hour traffic, in the rain. But a church friend, Julie, read the blog and knew it would be a long day, and brought dinner by at 7pm. It was a blessing.

Today was full of good news, and not so good news, followed by good news. Here is how the day went.
Bad news: Last week Bill’s torso and back were covered in a red/purple rash, which the doctors call “Chemo rash”. Plus, he had large red bumps all over his extremities. The doctors took a biopsy in 2 places. Today we met with the dermatologist to have the stitches removed and she told us it is Leukemia cutis or Leukemia of the skin, common with his form of Leukemia.
Good news: The chemo treatment he is currently being given will eliminate this cancer. And we are already seeing healing results. The rash is almost gone, and the red bumps are much smaller. Amen.

Bad news: We learned today that Bill’s type of Leukemia, M-4, is one that migrates to other parts of the body. It does not stay in the blood. That is why it went to the lining of the brain, inside the brain, spinal fluid, and skin.
Good news: There are no signs that it has attacked any other organs of his body. Amen.
Bad news: His chemo treatments next month will be increased to 5 consecutive days of chemo, two 3 hour treatments a day, with 12 hours in between treatments. He will stay at the hospital all week. It will be a brutal week for him. And a tough recovery.

Great news: Dr Shafer said his CSF (cerebral spinal fluid) was clear on the previous sample and clean of white cells. He will only need injections of chemo into the Ommaya reservoir once a week (and not every 3 days). Amen.
Good news: The chemo he had last week is killing the Leukemia cells in his brain, and Bill continues to show signs of improvement in brain functions. Amen.

Good news: The Neulasta (white cell builder) is just beginning to work, and Bill’s blood count numbers are on the rise. We won’t make it to church this weekend, he still has no immune system, but are hoping to be there Nov 4th before he goes back into the hospital. Just look for a guy wearing a face mask and a smile from ear to ear because he is out of the house.

This is probably way more information than you wanted to know. But, this was the reality of our day, and there was more good news than bad news. We are still fighting the battle, and still need your prayers. Amen.

October 23- Tuesday at the Cancer Clinic

October 23
I had another chemo treatment through the Ommaya Reservoir today with no ill effects. For those of you with a noon over/under, we were in the car on the way home at 12:55PM. My blood counts have been low from the previous chemo and I have been getting transfusions of platelets almost daily. I hope that my energy levels will increase in the next day or two. I am scheduled for another treatment on Friday afternoon and a trip to the dermatologist. We start at 12:30PM so we should be done around 5:00PM. Please send your comments relating to a 5:00 PM over/under for completing the treatment. The person coming closest to the actual completion time will become the official Bill Huber blog site Loyola Cancer Center treatment schedule predictor and entitled to all of the benefits that go along with the title, which are too numerous to mention at this time.

I thank you again for all of your interest and comments and look forward to reading the next day’s comments and bestowing the title of schedule predictor on the deserving individual.

May God wrap His loving arms around you and your loved ones,
Bill

October 22- Quick Update

Just a quick update to let you know Bill is doing fine.
Over the weekend his CBC (blood count) took a dive, as it should for the next 2 weeks. So he can no longer be exposed to bacteria, viruses, or fungus. Home Health Care came by Sat and Sun to give him transfusions of red cells and platelets to keep the numbers stable.
We saw the hematologist today for just a visit, and will return on Tuesday for his second chemo injection in his Ommaya Reservior, more platelets, and have his stitches removed from surgery. So, it's a big day tomorrow. All this should be accomplished by noon.
Hopefully, Tuesday's visits will be uneventful, but I will let you know tomorrow evening.
Nancy

How to Chat, by Jon Huber

So, you’re being forced to join a chat room. It’s very easy, and I might provide too much information, which may result in more confusion than clarity. If you have any questions, then add a comment to THIS post.

First, click on the link to the Chat Room.
Bill's Chat Room

You will get a ‘loading’ screen; give it a few seconds to load. If you get an error, try this link, it will install the most recent version of Java, it’s free:
http://www.java.com/en/download/index.jsp

After the Chat Room loads, you will be prompted for a Username. You can enter in anything you want, but something that can be associated with you is best. For me, Jon, JonH, JonHuber, Jon Huber, Jon Says Go Vols are all good Usernames. You can change the Username at anytime you re-enter the site.


Once logged-in, chatting is ‘easy’. Type what you want to say, then press the ENTER Key. Really, that’s it.


As a note, all the typing will disappear if you re-open the page. The chat room is not meant to be a ‘long term’ transcript, if you want to say it and make it last forever then add it to the blog.

October 19 - Day 2 and Counting

Not much happening today – eat, nap and read. I am almost through David McCullough’s 1712 and after that, I will tackle two more revolutionary war era novels. After my doctor visit on Monday, I am going to establish an exercise program to work on stamina and general body strength. For those of you who know me from Knoxville and London, I weigh about the same as when I was living there and running 25 to 30 miles a week. I wanted to get back to that weight, but I had a different method in mind of getting there.

As usual, Nancy is my biggest booster and keeps me on track and moving forward. Her tireless spirit and energy are an inspiration to me.

Now that I realize that I can solicit over a dozen comments by writing a couple of short paragraphs, I will add writing the daily blog to my daily therapy. Your comments make me laugh, cry and feel very thankful to have such wonderful family and friends. Your comments also make me realize how quirky and somewhat crazy this circle of family and friends is. However, I do not believe brain surgery will fix this bunch.

Jon wants to set up a chat room on this site so that we can communicate for an hour a day. Let me know what you think.

Thank you for your support.
Bill

October 18- Day 1 and Counting

Today is Thursday October 18 and my first day to be truly at home. For all of those who wish to know what its like to have a second hole in your head, I would like to describe it in great detail, but as they say, ”I have a hole in my head, but that’s beside the point.”

I feel much better than when I was discharged two weeks ago. At that time, things seemed to be moving in slow motion. Since Monday’s surgery I feel much more alert and aware of my surroundings. However, I still need a nap every now and then. With the medication regimen they have set up for me, hopefully I will be able to settle into a routine in the next few weeks and build some strength.

Thank you so much for your blog comments. They have lifted my spirits and have given me a push forward to face the new day.

Warmest Regards,
Bill

October 17- Home again

It has been a long day of waiting. We have definitely been on "Hospital Time" today.

Bill received his first chemo injection into the Ommaya Reservoir this evening at 7 pm. There was a holdup because his platelets were below 50,000 and he needed a second transfusion to bring them up to an acceptable count. He was a brave soldier while he received the injection and there were no side effects. (Side effects are immediate when chemo is injected into the spinal fluid.) He will receive injections every 3-4 days until the spinal fluid is a clear color and tests negative for white cells.
We are home, he is not only in bed, but fell asleep as soon as his head hit the pillow.

He had a neurological test done today to test different parts of his brain and proceeded to tell me that I would have failed it. (He is probably right). Better line me up for an MRI next week. In fact, Jon thought we should just buy an MRI machine and we could all be tested.
We have 3 trips to the doctors next week. Hopefully they will all be uneventful.

Jon has talked about instituting a "Chat room" on this site. Hopefully, Bill will feel like working on the computer, and he can schedule a time that he is online. Then y'll can ask Bill questions directly and get an immediate answer. Hope this works. We will talk about this in the morning. Good night.

October 16th- Where in the world is Bill Huber?

Did you ever loose someone in the hospital? Jon and I were with Bill in Neuro ICU on Tuesday morning. We needed to leave for just a few minutes, and when we returned the room was empty. Empty of Bill and our belongings, (which included tonight’s dinner in a cooler). We knew the elevators were slow as molasses, so we ran 4 flights of steps to the Hematology floor, and actually beat Bill to the room on the 6th floor. He looked surprised to see us walking down the hallway towards him.

Bill is improving every hour. He is now asking questions, responding to questions asked, eating and watching less TV. He even got on the blogsite and read all your messages for the past 5 days. It won’t be long, and he will be a blogger writing his own story each night. It is amazing what happens when an unwelcome substance is removed from your brain. BILL IS BACK!!!

Bill’s first round of chemo (Methotrexate) will be given by injection into the port on the top of his head on Wednesday. We are told this is painless, and has only the typical chemo side effects. Cancer cells in the brain are very slow growing, so only a few injections will be given over the next several months. The doctors are not saying how many injections there will be.

Today Bill was given a drug called Neulasta. It will stimulate the growth of the good white cells to help restore his blood once again. His blood counts were:
White cells: 2,200 HGB: 8.4 Platelets: 58,000
These numbers are on the low side, and may get lower as the chemo drug he had last week does it’s job. He will be monitored at home (Home Health Care Nurse) to keep his blood supply at the right levels.

You will love this story.
The doctor wanted a psychological evaluation done on Bill for depression. When asked the question “Are you depressed”. Bill responded, “No, why would I be depressed. I have so much to be thankful for”. Now that is the man we know and love. Amen.

October 15th - Don't Call It a Comeback

After some time with Bill, he’s doing significantly better. As a clarification, what the doctors called ‘fluid’ in the right frontal lobe the neurosurgeon called ‘blood clot’. Mom and I reviewed the pre-OP MRI; the clot was ¾” thick and spread over the entire quadrant of the frontal lobe. Based on a post-OP MRI the Ommaya Reservoir was placed ‘perfectly’ and a majority of the fluid was removed. There’s still leukemia in the brain, which is why the Ommaya Reservoir was installed.

He is himself. He was laughing and conversing. In fact, we had him laughing so hard he hurt due to the tubes and general post-OP soreness. It was the most I’d seen him laugh all week. Every time I saw him laugh, it brought a couple of tears… the good kind.

The fight is still ongoing and he still has a bumpy road ahead, but seeing him today let me know he’s equipped for the challenge, with Mom’s help. Tomorrow he moves from ICU back to his ‘home’ on the leukemia floor. The ‘what’s next’ still remains open.

This blog is probably my last; Dad and the website are back in Mom’s hands. She’s living with this fight and still has a lot of hard work ahead of her. I hope all of you Chicagoans can continue your support.

Jon

October 15th - Bionic Bill

Bill got into surgery at 11:45am and the procedure was complete at 12:30pm, no complications. Mom and I are still in the ICU waiting area. There's typically a 2-3 hour hold before they transfer him to a room, at which time we will pay him a visit. During the process, the neurosurgeon removed a blood clot in his brain with the same incision used for the Ommaya Reservoir. No answers on the clot, but the doctors need to meet at the round table before communicating to us.

The plan is for Bill to leave the hospital Tuesday and his Spinal Fluid Chemo will start Wednesday or Thursday. However, nothing is definite until it actually happens. This weeks findings were a slight deviation from path to recovery, but I think we're back on track.

Thanks to all of you for your support.
Jon

October 14th - The Day Before the Day

It’s still Jon on the keyboard. I have a little bonus time in Chicago. As you can see, Bill has been prepped for surgery and is ready to get it started… and finished. It will occur between 8am and 11pm Monday. At least the cable company provides a 4-hour window. He is growing impatient of the hurry up and wait mentality. Sound like Bill to any of you?

He also wanted to show-off his Halloween costume before all the Trick-or-Treatin’ starts. After further review, I’m thinking Apple Jacks not Froot Loops.

I’ll put a quick post tomorrow after he’s done surgery.

Jon

October 13th - Long Night of Chemo

It's 11pm CST and there's about an hour of chemo to go. Mom is back in town and the three of us are sitting around watching football highlights (Mom will be asleep soon). We are all looking forward to getting home. Dad will get a good nights sleep, but we will return Sunday afternoon to get Dad prepped for surgery.

Surgery you ask? Yes. Dad is getting an Ommaya Reservoir installed sometime Monday. This apparatus acts as a quick-connect valve to inject chemo directly into his spinal fluid. It will go under the skin on the side of his head. They will take a 3D image of his brain and that will guide them through the surgery. A neurosurgeon glued the nodes in place, it looks like he has Froot Loops stuck to his head. Very 'Matrix', if you get the movie reference.

A new chemo schedule has not been communicated to us, but the doctors prefer to wait 48 hours after the surgery to start chemo. Our guess is that he will stay in the hospital for a couple of weeks, but nothing is concrete.

The original plan was for me to get on an early flight back to Knoxville on Sunday, I'm now going to leave Wednesday afternoon. I can't leave the food from the support group (Grace United Methodist - Questors Sunday School Class), it is too good.

Keep praying for Monday's surgery (special request from Mom).
-Jon

October 12th - More Results

The best news for Dad is that he's home for the night. His first task was a 2 hour nap, sleeping at home is much more peaceful than the constant interruptions at the hospital.

This evening, Dad got the results from the spinal tap. The spinal fluid does contain leukemia.
At the moment, we don't know the details. The neurosurgeon will meet with Dad tomorrow before the Saturday chemo treatment. Good news is that this week's chemo treatment does penetrate into the spinal fluid, the initial treatment did not. The doctors did mention the are going to treat this cancer aggressively.

Dad took the news in stride. He said a backlash from the leukemia was not surprising because of how sick he felt. He's still fighting.

Jon

October 11th - More Tests for Bill

No answers today, but two more tests were performed. The morning started with another MRI, this time on the upper spine where the neck meets the brain. They are looking for more 'dead cells', but more important, the MRI will act as a baseline for future exams. The second, a LP (Lumbar Puncture, aka Spinal Tap). These results are expected on Monday. The big question is if the spinal fluid contains leukemia or not. Lots scenarios based on what they find, to be continued.

Dad is spending another night in the hospital... it's possible he will get to go home Friday. Regardless, he will return Saturday for a chemo dose.

The best news is that Dad ate food. Yesterday, he ate very little. In his defense, dinner was cafeteria style roast beef. It did not look tasty, and I wouldn't blame anyone for not eating it. Today, I brought rigatoni from home and warmed it up when he was ready to eat... he was a member of the Clean Plate Club. It is good to know he still has an appetite.

Jon

October 10th - "The Results Show"

The doctors have conviened, and the results have been submitted. Dad has fluid in the Dura Membrane layer in his brain. What is the Dura layer? Wikipedia has the scientific answer http://en.wikipedia.org/wiki/Dura_mater.

Specifically, fluid has gathered in the right frontal lobe of his brain, the MRI and following CT Scan found clusters of dead cells in this region. As the chemo kills large amounts of cells, some gathered in the Dura Layer. It's possible that the cells caused a minor hemorrhage... given Dad's inability to clot his blood during chemo, the small hemorrhage was a bit more significant. The 'fluid' has been classified as 'old', so no one knows when it started... but all tests suggest that the inflammation is NOT getting worse.

The right frontal lobe controls personality and planning. As the fluid in the membrane imposes a pressure on that region, the brain function in that region is inconsistent. All you RNs and MDs correct me where necessary (DDS or DMD responses will not be considered).

So, what's next you ask? The current opinion is that draining the fluid will cause more harm than good... my impression is that the doctors don't think the swelling will get worse. A spinal tap will occur tomorrow. They want to get some data on the fluid... does it contain leukemia, what are the dead cells, etc.

How was this just discovered today? I blame Dad's stubbornness. He puts on a good show when the doctors / nurses ask him questions, but Mom and I agree that he 'shuts down' with us non-medical people in the room. The credit for the discovery goes to the RN (Marion). When admitting Dad, she was grilling him with medical questions, and his 'front' came crashing in. She talked with doctors, doctors asked me some questions, tests were requested... you know the rest.

I'm glad these discoveries were made. Dad is not himself and he's doing his best to fool everyone. His body is still responding to the chemo, his bloodwork is still good. There's just one more hurdle for recovery. Keep him in your prayers.

He has another night in the hospital and he's not happy about it.

Jon

October 9th - Orderly Jon

Well... Nancy (Mom) is off in Charlotte being a Grandmom with Kari's new bundle of joy. Hence, why I'm up in Chicago daddy-sitting and in control of the blog.

The second round of chemo has started (ARA-C). The hospital was running a bit late, we arrived at 8am, but chemo didn't begin until 5pm... it will end around 6am Wednesday. Today, bloodwork was good, but I don't have any numbers... or a run chart... maybe tomorrow.

While Dad's bloodwork is holding steady, the doctors are concerned about his energy level. He is too lethargic for this stage of chemo, and at times he has trouble completing his thoughts. With so many factors contributing to his condition, a defined diagnosis has not been determined. A MRI is scheduled to dive deep into Dad's inner thoughts. I'm hoping an analysis will be provided in the next couple of days.

Jon

October 5th- Bone Marrow Results

Once again, as the doctors predicted, Bill’s bone marrow is “clean”. That means less than 5% white cell blasts. This is what the doctors want to see, and they say his body is ready for the next round of chemo.
Bill will return to Loyola Medical Center early Tuesday morning. He will have a 3 hour chemo treatment of just one drug. Rest for 8 hours, then repeat another 3 hour treatment. He will either spend the night in the hospital, or come home, depending on the hour that they finish. Jon arrives on Monday, so he will be taking Bill to and from the hospital, a 1 1/2 hour drive in rush hour, or 45 minutes other times.
Bill will return on Thursday and Saturday for a repeat of Tuesday. Then home to rest and rebuild his blood supply again.

The doctors say, and we are hoping, that this round will not be as brutal as the earlier treatments. I will let you know about that. And I might even get Jon to “blog” while I am in Charlotte. Otherwise, it could be a week before I write again.

The meals our Sunday School Class and neighbors have brought over have been so good. Bill and I are both gaining weight. A good thing for him, but not for me.
God Bless you all.

October 3rd- Big Day at the Cancer Center

This was our first time in the Cardinal Bernadine Cancer Center. What a beautiful facility. Loyola University Medical Center is almost 60 years old. But their cancer center (a separate building) is spectacular. We kind of bypassed that building in September when we went straight to the hospital.
Bill’s bone marrow biopsy went well. Our hematologist/oncologist, Doctor Shafer, did the procedure. No results yet, you will have to wait until Friday night.
Bill’s blood counts have improved again. His red cells are “normal” at 15 and his white cells have stopped multiplying so rapidly and have lowered to 12,500. It was immediately evident that he was feeling better when he chose to walk up the steps and not take the elevator at the Cancer Center. I was pleasantly surprised.
On our way home, we pass Bill’s office. I again knew he was feeling better when he wanted to stop in and visit. We spent an hour “making the rounds”, and it was so good for his well being to see everyone. If you are reading this, and you work in Bill’s office, click onto “Comments” below and leave a message telling others how he looks and sounds. He was having such a good day. His first day outside for any length of time since August.
After the results are known from the BMB they will schedule the Consolidation round of chemo. The doctors say maybe Tuesday of next week. It will be 3 days of just one chemo drug, Cytarabine (Ara-C) every other day at the hospital, staying overnight the day of the chemo, but going home in between treatments. He will NOT be given the clinical trial drug, Mylotarg, that caused an allergic reaction.
Bill had an eventful morning. He has slept all afternoon, ate dinner, and is back in bed for the evening. I don’t know if he will even make it for the first inning of the Cubs game tonight.
It was so good to see him have a good day, and hopefully a good weekend, before the chemo starts again.

“The journey of healing is traveled one step at a time.” We are taking our “baby steps”, one step at a time. Thank you for holding us up in your prayers. Every little bit helps.

October 2nd- Shhhh....Bill is sleeping

You guys would love Bill’s life right now.
Sleeps 10 hrs at night. Gets up for breakfast.
Takes a morning nap. Eats lunch. Opens the mail.
Takes an afternoon nap. Goes for a walk around the block (because Nurse Nancy makes him walk.)
Has dinner, watches sports. 9pm is bedtime, and the cycle begins again.

It’s really not all that bad, there is some “wake time”. And, I am glad he can sleep. His body is doing a great job making blood. Some of you have asked about his blood work.
Remember normal is the following:
White cells- 3,000-7,000 HGB- 12-18 gm/dl Platelets- 150,000-400,000

The day we left the hospital (Friday) Bill’s counts were:
White cells- 12,600 HGB- 7.9 Platelets- 50,000

Monday, a Home Health Care Nurse came to draw blood. The results:
White cells- 24,000 HGB- 11.2 Platelets- 110,000

The nurse would have come back that afternoon to give him blood if his red cells or platelets had been low. But as you can see… Bill is doing GREAT.
I was concerned about the high white cell count. But, the doctor says, the Neuprogen shots were given to increase the Neutrophil (good white cell) count, and that is hopefully the good cells multiplying to control the mutated white cells.

Wednesday morning we go back to Loyola Medical Center for his third Bone Marrow Biopsy. Those results will tell us what is happening in his bone marrow and what our next step will be. As soon as I know the results, I will send out a blog.

We pray this day for Bill/Dad to have comfort during the biopsy, and for the best results possible under the circumstances.

A verse from Exodus 33:14 " .....’My Presence will go with you, and I will give you rest.’” says it all. Thank you Lynn for that card. Very timely.

Sept 28th- Coming Home- Bill and Grandbaby Andrew

Bill has left the hospital (sounds like an Elvis thing). It was emotional leaving the nursing staff, the residents, doctors, and some of the patients we had befriended. (The snoring man had already left the hospital).
Home Health Care will start on Monday, but we have been trained (just in case) to clean and change his PICC line that remains for future chemo treatments. We have learned the definition of “sterile” when it comes to working with a tube that bacteria can travel to heart in an instant.
Bill’s only instructions are to rest, eat well, avoid crowds and (you will love this), avoid school teachers. He can have visitors and phone calls. His immune system can now handle bacteria from fruits and flowers. He is almost normal.

Visitors should not come if you have just had a flu shot. It is an active virus.
We return to Loyola Hospital on Wednesday for blood work, a doctor’s visit, and another Bone Marrow Biopsy. The results will tell us how he really is doing, and when Consolidation chemo will start.
Once again, we are humbled by your cards, well wishes, prayers and concerns. It has meant so much to Bill and I. Thank you for your kind words.
If you want the blood work “numbers” just ask. Let me just say, “They are GREAT”. Amen

New news. Kari said we couldn’t have two Hubers in the hospital at the same time. Bill came home on Friday afternoon, and she went into the hospital on Friday evening. Andrew was born Saturday at 12:20pm. He weighed in at 9 lbs 3 oz. Jeff says he has big hands and big feet. Baby and mom are doing fine. Guess Andrew better wear those newborn clothes quickly, he’s already a big boy. Nancy has a plane reservation for next Saturday to Charlotte, NC. (You can see where her priorities are, Bill or new baby….no contest). Janine and family are coming for the weekend to help Bill, and Jon is coming for the following week. It is wonderful to have family members that can “rise” to the occasion when needed.

Kari’s address is: Jeff and Kari Langley, 211 Mingus St., Belmont, NC 28012

Kari has gone to the hospital

Looks like we will have a baby this weekend. Kari and Jeff went to the hospital this evening. More later.

Sept 26- The Numbers are Rising

Bill/Dad’s blood work just kept getting better as the day went on. His platelet count was so good, he did not receive any platelets today. Which also means he didn’t get any Demerol in the morning before the platelets. This means he was more alert and his speech was not as labored. The numbers will probably drop on Thurs, but that is okay. They will go up and down for the next few days. Then rise quickly (or so they tell us). The next step is to eliminate the antibiotics by IV for a couple of days, and then he will be ready to come home next week.

Here are the numbers:
Wed morning- White- 2,300 HGB- 8.1 Platelets- 24,000
Wed afternoon- White- 4,900 HGB- 8 Platelets- 43,000 ANC- 400

You are really good at praying. Keep up the good work. Someone must be listening.
I won’t have any news for the next few days. Same old thing. Numbers go up…numbers come down. I’ll let you know when we are home (Oh what a nice word.)

No grandbaby yet. He is due any day. Kari had her last day of work on Tuesday. She is taking a much needed rest before the big day.

Sept 25- The Waiting Game

The doctor walked into Bill’s room and said, “BORING……. Nothing new, everything moving along as we expect." No fevers, no reactions. Just working on building those good white cells back to “normal”. He still receives either one or two 5-unit bags of platelets everyday.
Today is Bill’s 5th shot of Neupogen, the good white cell builder. The ANC (Absolute Nertrophil Count) will have to rise above 500 for Bill to go home. It still remains at zero.

For those keeping track:
White cells 500, HGB 8, and Platelets 10,000. The doctors assure us, that when the numbers begin to go up, they will rise quickly. But nothing yet.

Questions you all have asked?
Q: Can Bill talk on the phone?
A: Bill is still anemic, which means VERY TIRED and doesn’t want to talk on the phone. He will call you if there is something you need to know. For the same reason he doesn’t need company either. Especially if the Chicken Pox virus is at your
house!!!!! Bill has NO immune system. You can’t even shake hands with him, and
guys, absolutely NO HUGGING.

Q: Has Bill lost weight?
A: Bill has lost 15 lbs. He now weighs under 170 lbs. But, with the Sunday School
Class’s help, we will have him fattened up in no time. Bill did not get physically ill from the chemo, but he eats very small portions. He is just not hungry.

Q: Has Bill lost his hair?
A: Yes. And he hasn’t shaved for 2 days. I think he likes that part.

Q: When will Bill come home?
A: Doesn’t look like it will be this week. We will aim for next week.

I know I am being “The Overprotective Caretaker”, but Bill is not recovering from surgery. He is recovering from his blood supply (bone marrow) being destroyed, and the chemo is still doing that. It is an effort for him to sit in a chair or sit up to eat. But he is a fighter, and is giving this all he has. When I said he was a “Cancer Survivor”, that means he survived the first round of chemo, but has a lifetime battle ahead of him. This is far from over.

Our prayer for Bill/Dad this day is for the Lord to give his body the strength to make the “good” white cells that will help his body heal. Amen

Sept 24-Message from Bill

I want to thank everyone for their comments of words and encouragement. I continue to be overwhelmed and humbled by the response to the blog site.
It looks like 5 to 7 more days of hospital stay before I get to go home. So far the doctors are happy with my progress, and I just sit back and let Mother Nature take it’s course.
Thank you again for your comments.
Bill

September 21st, What a Glorious Day!!!!!

When the doctors walk into a room with smiles on their faces, you know something good is about to happen.

The bone marrow is CLEAN of blasts of white cells. That means the reading is less then 5% BLASTS (the mutated white cells). Some white cells must be left in the bone marrow so they can begin to reproduce the good white cells (Neutrophils). The chemo treatments were a success, and Bill is a CANCER SURVIVOR.

Now the rebuilding of white cells begins. There are 5 types of white blood cells. Each cell type has a special function. The Nertrophils are the most important cells in fighting bacterial infections in our body. We want to see his ANC (Absolute Neutrophil Count) begin to rise. It has been at zero during the chemo treatments, it needs to be at 500 to go home. He received his first injection of Neupogen in his abdomen on Friday. Neuprogen stimulates the growth of good white cells.
Bill continues to receive platelets, 10 units on Friday and antibiotics. He cannot come home until his immune system and blood counts are much higher.
Friday’s numbers were 500 White, 9.7 HCB and 6 Plts. ANC- 0

Bill will be home for about 4 weeks, then start the second round of chemo called “Consolidation”. This is not near as aggressive of a treatment. Just one chemo drug, 8 hours a day, three times a week, one week a month, for three months. (Did you get all that?) He will be back to work (half day), probably next month. Can you believe that he has gone from “near death, to “back to work” in 6 weeks. Praise the Lord!!!! And the doctors at Loyola.

Nurse Stephanie, who is our “real” source of information, explained it best. She said, “Bill, if you made it through this, you can make it through Hell and back.” The chemo treatment for AML is the most aggressive chemo treatment given. 24 hours a day, seven days a week, 4 types of drugs. The chemo treatments in the next 3 months will be a “walk in the park”.

Bill’s spirits are high. He cannot believe he will be out of the hospital in 7 days, and we are hoping for a speedy recovery.

THANK YOU……. THANK YOU….. THANK YOU. Our prayers were answered.

Sept. 21 - Our Prayers Answered!

Dear Friends & Family -
The results are in: Bill is cancer free!!
It is with a joyous heart that I pass this info on from Mom/Nancy. She'll fill you in on all the details as soon as she has time.
(Being a journalist, I just had to get this breaking news on the web ASAP!)
Thank you so much for your prayers - keep 'em coming! Bill will need them for the next phase!
More to come...
Janine

Sept 21- Everything Remains the Same

"Everything Remains the Same”

Just writing to say there is no change in Bill’s status. His blood work remains the same. He still needs platelets everyday, and the good news. No Fever. Since he is still anemic, his energy level is low and he can take a nap whenever he wants. Results from the Bone Marrow Biopsy will be ready on Monday. Those findings determine the next step.

Janine, Don, and Maggie will be in for the weekend. So I will get my Maggie “fix’. We will not take her to the hospital because of the C-DIFF bacteria.
Kari’s baby is due this week, if “Andrew” decides to be born in September, and not October. Kari and Jeff are ready for his arrival. Laura (Jon’s wife) is on hold to help Kari, until I feel comfortable to leave Bill and spend a week in Charlotte.

Please remember......No flowers, no fruit, no visitors. All have bacteria that Bill has no resistance to right now. And, the room phone has been unplugged. For our West Virginia friends that are just getting word, sorry it took so long. Cards should be sent to the house. With any luck, Bill should come home next week, maybe.

This verse was on a card from Amy and Ali, and was just right for the moment.
The smallest things can change out lives-
One hand reaching out to another…
One prayer whispered in faith…
One moment that shines with His presence.
Thinking of you...
Praying for you...
and wanting you to know how much we care.

Bill and I are overwhelmed with the love, concern, and well wishes you have shared with us. Thank you all.

Sept 19- BMA Day

Yeah. The Bone Marrow Aspiration and Bone Core Sample are finished for this round of chemo.

Bill did really well with the BMA. He said it was not painful, just a pressure in the pelvis area. The doctor inserts a needle for the aspiration, where they draw the fluid from the bone marrow. The bone marrow is where our blood supply is produced. It is a mixture of white and red cells, and platelets.
The good news……... It was red in color. If you remember, two weeks ago, his bone marrow was white and thick with blasts of white cells. The chemo has done it’s job. Results from the BMA will not be ready until Monday. The doctor that reads the fluid is on rotation at another hospital
Bill has not had a fever for 5 days. Of course, he is on antibiotics about 3 times a day. I am sure that helps.

Bill’s blood continues to be low on all counts.

Bill’s count
White cells- 500
HOB (red)-9.6
Platelets- 13,000
Neutrophils- 0 (this is the “good” white cells, and we want to see this number go up in the next week.)

Normal counts should be:
White cells- 3,000- 7,000
HOB- 12-18 gm/dl
Platelets- 150,000-400,000

Bill’s red cell count is on the high side (for him) because he received 2 bags of packed red cells on Tuesday.
Bill is still anemic, still receiving platelets everyday, and red cells as needed.

Pastor Bryant brought us Prayer Shawls made by the ladies of the church. Bill wears both of them (mine and his) every evening when the room cools down. One is wrapped around his shoulders, the other across his lap. He said all he needs now is a babushka, and he’d look like his grandmom.

We both enjoy your cards and well wishes. Thank you so much for taking the time to remember both of us.

Our prayer this evening is for good results from the tests, and improvements in his blood supply. This puts us one step closer to recovery.
Please pray for the 5 other AML patients that have been admitted to Loyola just this month. They are hoping to go home soon also.

Sept 17- evening update

Just a quick update.

The culture showed that Bill has the infection, Clostridium, or in the medical world, C-DIFF. It is very common in hospitals when a patient is on high doses of antibiotics and has a weak immune system. He will be isolated (private room) until he has recovered, but he is not in any danger.

Bill had a GREAT day. Good nights rest, worked on the computer, and TOOK A SHOWER. His first shower since August. Think about that one.

I feel better too, guess I was worried about him.

Your prayers are working again. Thanks for staying in touch on the website.

Sept 17- Be Careful What You Wish For

Be Careful What You Wish For

Bill finally got his Private Room (for at least the next 2 days). But, it is to keep him away from others, not just others away from him. The doctors are doing a stool culture on Bill because they suspect a contagious bacteria. Nurses weren’t talking last night, so I hope to get more info today. It takes 2 days to run the culture and know if there is a problem.

Bill has not had a fever for 2 days. Amen. Thank you for your prayers. They were answered. When he is free of fever, he eats three meals, and even wanted cookies in between meals.

His white cell count is holding at 300. His red cells (7.6) and platelets (13,000) were again low, so on Sunday he received both red cells and platelets. Once again, the platelets were one donor, A Positive, and a large “fresh” bag about 8-10 units. He never really perked up after the packed red cell IV. Guess the Bears game zapped him of his energy.

We pray that Bill, through medications, will be able to fight this new bacteria.
Please pray for me, I am getting tired, and we have a long road ahead of us.

September 15, 2007- Today was a "7".

September 15, 2007

Today was a “7”.

If the Tennessee Vols had beaten Florida, it would have been a “10”.

We are now “rating” our days. This is a huge improvement in his recovery. Before Bill was just into survival, now we have degrees of well-being. Though we have also discovered that just when you think your day is a “7”, it drops to a “4” within the hour.

Bill continues to be plagued by fevers (101 degrees). I no longer panic when his temperature goes up. We now know the routine. Cold wash cloths, ice packs, fluids. Tylenol. After about 2 hours the fever comes down. Much faster than last week.

Bill is continuing to receive blood platelets on a daily basis. To try to eliminate one possible cause of the fevers, he is now getting “fresh” blood platelets that are only Type A positive from one donor. If you live in the area, and are Type A positive, and have the time to give platelets at LifeSource, 2707 Aurora Ave, (630-355-2385) your donation of time and blood would be much appreciated by Bill and I. Your donation has a very good chance of being used by Bill, because he is only be given blood that has been donated in the past 5 day. LifeSource is the supplier of blood for Loyola Hospital.

If you are “frustrated” because I won’t let anyone do anything for us (because there really isn’t anything to do at this point), giving blood, wherever you live, would be the greatest gift of all. Almost everyone on this hematology floor at the hospital is receiving packed cells or plasma everyday. It has really made us aware of the need for blood donations. Just let us know on the website that you gave blood, and Bill will be forever grateful. Me, too.

If you are tracking Bill’s white cell count, it was down to 300 on Friday, and up a little to 500 on Saturday. The doctor wants to see it at 100.

The doctor said Bill was a “B plus” patient. He would have been an “A” patient, except for his body rejecting platelets. Hey, we have to make these doctors earn their keep. Don’t want to make it too easy for them.

Bill is getting stronger each day. Again, thank you for your prayers and word of support. It keeps us going.

September 13- The Healing begins...

With any luck, there won’t be too much to write about in the next 5 days. Bill has now completed the Induction Therapy (chemo). As of 6pm this evening, all IV’s have been completed, and he was a “free” man, free of the pole with the hanging bags. Now we let the chemo drugs do their thing, killing the white (and red) cells and hoping the red and “good” white cells rebuild, and the Leukemia white cells do not multiply.

If you are keeping track. Bill’s white cell count is still holding at 400 (that is a good thing) and red cells and platelet counts were still good.

If you want the gory details of the day, here they are. When I arrived, Bill had had a fever most of the night and it was just breaking in the morning. It was time to give him 5 units of platelets, so Demerol comes first because of his allergic reaction last week. So, he fell asleep and missed lunch. When he awoke, it was time for the second IV of platelets, so they gave him Demerol, and he fell asleep. There went the afternoon. (This is the reason it would be silly to come visit Bill, unless you want to come and talk to yourself or his roommate’s wife who talks all the time.) He did have a slight reaction to one of the platelet packs, and I noticed it was O and not A (his blood type). They say it does not matter on platelets, but something caused the reaction. The nurse gave him a steroid and oxygen After an hour, he was okay again.

He was awake for dinner, and he ate well. He walked the halls. Read your messages on the computer, and worked on the computer for a while. Your messages mean so much to him. Whether they are caring words of encouragement, or something that makes him laugh. And, it is wonderful to hear him laugh. Thank you for the part you are playing in his recovery.

Our next big day is Wednesday, September 19th. That is the second bone marrow aspiration and biopsy. Results should be available by next Friday. Check back next week to read what Bill’s next treatment will be.

Our prayer this evening is for a night (and day) without fever.
Our prayer is for the healing hands of God to touch his body.
Amen

Sept 12- First Round of Chemo is done

Wednesday, September 12, 2007
The Induction Round of Chemotherapy is Over


Sorry I missed a day on reporting Bill’s progress, but I wanted to give those who were learning about Leukemia a brief introduction to Bill’s illness. ( Read: “What Happened to Bill? to learn more).

Today, Bill received his 7th and last dosage of medications in the Induction round of chemo. On Thursday, about noon, he will be disconnected from all IV’s and will be a free man. This means he can walk the halls of the hospital wing for the next week. He has had as many as seven IV’s hanging from the pole at one time. I enjoyed watching the number of bags diminished throughout the day.

Bill usually receives one- 5 unit bag of platelets a day. But today he received 2 – 5 unit bags of platelets. The platelets keep him from bleeding. He is not even allowed to brush his teeth or blow his nose. ( He does have a special rinse for his teeth).

Bill did not receive red blood cells today. That is a good sign that his red cell count is up (9.0) and his white cell count is down to 400. The chemo is doing it’s job.

Some of you have asked me what chemo drugs he was on. They were:
Day 1-2-3- Daunomycin
Day 1 through 7- Cytosine arabinoside (Ara-C)
Day 4- Mylotarg- a clinical study drug that he had an allergic reaction to. (Bet we won’t be doing that one again.)

Plus, everyday he receives a heart medicine- Verapamil Hydrochloride, 2 anti-nausea drugs- Zofian and Compazine, antibiotics and transfusions during chemo. And that is just the transfusions. I don’t know what pills he is taking in addition to this.

Bill was not as active today as the past 2 days. But, he didn’t receive those red blood cells, and that is our source of oxygen for our lungs and brain. Plus, the effects of chemo are going to begin to take their toll.

Pray for Bill’s comfort as the chemo works it’s “magic”.
Pray for Bill to have patience as the 4 walls surround him.
Pray that Bill’s roommate doesn’t snore tonight so he can get some sleep. Amen.

What happened to Bill?... Condensed version - 9/11/2007

So many people have asked....What happened to Bill?
Here is the condensed version to help you understand what we have learned in the past 10 days.

Bill has Acute Myelogenious Leukemia (AML) type M-4 (Myelomonocytic).

It attacks quickly when the white cells mutate and multiply, cluster, and expand to get out of your bone marrow. It surrounds the good red and white cells and keeps them from doing their function in the body. Thus, these new white cells are called “bad white cells” and are a liquid cancer. They do not attach to an organ, but just their numbers can keep an organ from functioning properly. Normal is 3,000-7,000 cells. Bill’s count was 225,000 when we arrived at the hospital. An emergency situation for a Leukemia patient.

He receives 5 units of platelets each day, and when his red cell count is low, he receives
packed red blood cells (which is not the same as plasma) .

Bill is now on Day 6 of 7 days of chemo. The chemo is given 24 hours a day. Then on Sept 19th he will have a second bone marrow aspiration to get a new reading on the bad white cells in his marrow. The goal is zero. If the reading is not zero, he begins a second round of chemo. If that doesn’t work, a bone marrow transplant will be discussed. His white cell count is below 600 at this point, because the chemo is doing it’s job. Bill actually feels better on chemo then he did before he enter the hospital.

We cannot have any flowers, visitors (sterile environment), or fresh fruit (bacteria). At the moment he is feeling up to phone calls, but that may change as the effects of chemo set in. He cannot reach the room phone by his bed. He has too many tubes to worry about a phone cord.

Nancy’s cell phone is 630-240-5724- She is his personal secretary right now.

Mr. John William Huber (patient)
Room 6392-1
Loyola University Medical Center
2160 S. First Ave.
Maywood, IL 60153

Live today to it’s fullest. Because each day is a new adventure.

Update From Bill - 9/10/07

Hello all,

I want to thank all of you for your thoughts and prayers. I am humbled everytime I read your encouraging remarks and thoughts.

Day 5 of chemo has been similar to the last 4. Still waiting for my hair to fall out - though why that should be a big event for me is still a great unknown.

The days and nights are long but your support gives me great strength and makes the time pass quickly.

Just taking it one day at a time.

My thoughts and prayers are with you as yours are with me.

Bill

Sept 10, 2007

We had a wonderful weekend with the Huber Clan.

Everyone arrived on Friday. We tried to pace ourselves in visiting Bill. Everyone wanted to see him, but all the activity wore him out quickly. "Everyone" is Janine, Don and 5 month old Maggie from Indy, Jon and Laura from Knoxville, and Kari (37 weeks pregnant) and Jeff from Charlotte.

On Saturday, after visiting Bill, Janine, Don, Maggie and Laura headed to the Brookfield Zoo, which is just down the street from the hospital. Church friends (The Throndsons) who volunteer at the zoo, gave us passes to use. They had a wonderful time and loved the monkey exhibit and the elephants.

Another church friend (The Masters) brought over everything we could possibly need for breakfast. It was wonderful not to have to think about that, and the guys got in the kitchen and cooked up a feast. They even cleaned up afterwards.

Bill is now on Day 4 of chemo. He receives 2 drugs by IV, 24 hours a day, for 7 days. He also receives red blood platelets everyday and if needed, he is getting plasma, but not on a daily basis. He is tired, very tired. But his strength is building, and he is getting out of bed and sitting in a chair to eat. Today I will take the computer to the hospital and see if he is interested in working on it.

Bill was healthy before all this started. His chances for a cure are very good. His organs are handling the chemo drugs very well. The bad white cells are being destroyed (as well as the good cells), and don't seem to be multiplying at a faster rate then they are being destroyed. (Amen). We will know the outcome of chemo in 2 weeks when he has another bone marrow aspiration.

Interesting fact: The results of Bill's first bone marrow sample showed it be 50%-60% white cell "blasts." Blasts are the mutated white cells that take over the blood and destroy the good cells. The color of his bone marrow was white. (I believe red or pink would have been much better.)
The attending doctor had never seen this before.

We thank you for all the cards you are sending, and well wishes. Bill has not read the get well cards as of this date. He is very weepy, and I'm sure that comes from his weakness. But the cards are in his room just waiting to be read when he is ready to receive your good wishes and prayers.

I go to the hospital everyday. Not only to be with Bill and care for him in the "little" ways, but watch what is going on, speak to the doctors, and become more educated on the subject of leukemia. After 8 days, I have more knowledge on this subject then I wish to know.

Thank you all for you prayers, well wishes, and offers of help. We are in this for the long haul, and I may need your help later.
Love,
Nancy