Journal History

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Tuesday February 12, 2002 11:01 PM CST

Thursday January 17, 2002 3:22 PM CST

Butch's sister Pat, writing here in Minnesota again.

Many of you have heard via e-mail from my son Rick, Sheri's cousin, that Butch passed away at midnight last night.
Sheri will be updating this journal as soon she can. She and Patti are seeing to the many details concerning the Arizona and Michigan services for my "outstanding" brother. (That was one of Butch's favorite adjectives!)

THANK YOU ALL FOR YOUR MANY KIND THOUGHTS, WONDERFUL GIFTS OF LOVE, AND YOUR PRAYERS.

With much love, and gratitude,
Pat Hauke Dahlman

Wednesday January 16, 2002 8:49 AM CST

This is Butch's big sister Pat in MN, writing for Sheri this morning.
Everything was going great for Butch on Sunday. He was sitting outside in the 70 degree temperature, helping Patti's twin sister Jan (visiting from MI) water the flowers in the yard, and even walking to the end of their cul de sac.
Monday morning he was "out of it", when dawn came. Patti gave hime a 10 mgm dose of steroid in addition to the 2 he was scheduled to receive, but that didn't help. Dr. Rekate approved his having another 4 mgm later that day, but it did nothing to improve his lethargic, non-responsive state. He also had a headache, and never got out of bed the entire day. The Hospice nurse came to check on him later in the day.
She returned with pain medicine similar to morphine...Oxycodon-IR (the IR for instant release).
He has been given that every hour on the hour since 7PM Monday, administered in liquid form by dropper. Initially it made him real groggy and he pretty much slept through Monday night and up to yesterday morning.
(He was having trouble swallowing Monday but was able to have some Jello and yogurt.)
There was no change yesterday. The Hospice nurse came and gave her evaluation--that he is dying.
So yesterday they had to consider some choices. Returning to the hospital really wasn't one because the Tumor Board at Barrow determined it would be "cruel" to put Butch through more surgery. He needed more fluids and possibly more steroid to see if he could come out of his non-responsive state. He was taken to the Desert Samaritan Palliative Care facility (run by Hospice of the Valley) by a medical van in late afternoon yesterday.
Sheri reports that there is little change today. He was able to sit up in bed late yesterday and has swallowed some Jello.
Now, he is up to 24 mgm of steroid, crushed and given in water, but it is not improving the situation.
He is perspiring profusely,but his vital signs are good.
He did say that he wants to go home last night, but as of 3 AM this morning he is not responding at all.
He is getting oxygen, and has fluid in his lungs. The nurses suction his throat when necessary.
Sheri has a new white puppy named Camelia and she slept on Butch's bed for three hours last evening. (One of the doctors I heard speak at a Brain Tumor Symposium loves that animals are allowed in with patients---he said if he could, he would release all the dogs in the dog pound to care facilities!)Megan was walking Camelia down the hall when I talked to Sheri late last evening.
Patti and Sheri were able to spend the night with Butch. There is a LazyBoy chair beside his bed, and he is by a window.
Megan,Jan AND CAMELIA were to be there very soon, and they will all spend the day with Butch. (The other patients enjoy Camelia too.)
The Hospice minister was expected to visit soon, as well as the Hospice director.
Your thoughts and prayers are deeply appreciated.
Pat

Thursday, January 10, 2002 at 11:29 AM (CST)

Happy New Year everyone!

Its hard to believe its been almost a year since Dad was diagnosed with the brain tumor - it will be a year at the end of Feb. The fight continues, and our family continues to pray for more miracles. We feel blessed that Dad is still here with us - and wish for some days that he could feel 100%.

Dad has been home since Christmas Day. We ended up not going to Sedona for New Years Eve - it would have been way too much for Dad. The air is thinner up there, and with his shortness of breath/ blood clot he decided it would be best if we relaxed at home. We had a nice quiet relaxing evening.

Dads steroid dose is still changing... from Dec 26-28th he took 12mg per day. On the 29th he went down to 9mg - and took that amount until Jan 2nd. From Jan 3rd - present he is taking 6mg per day. We have noticed that his word finding has gotten worse...sometimes its really bad, and other times he talks like nothing is wrong. He will stay on the 6mg dose until one of the doctors tells us to change again.

For the blood clot Dad has been taking Coumadin to thin his blood. Dr Forseth wrote orders for a person from the blood place to come to the house once a week to draw Dads blood. They test it once a week in order to see if his blood is the correct consistency. After his first few days home from the hospital, they found Dads blood to be too thin - so decreased the Coumadin dose. The next time they drew blood it came back too thick, so Dr Forseth increased the dose to 5mg - as of Jan 4th. Hopefully the Coumadin is working away at the clot in his lung - but we are told it may take MONTHS for it to dissolve even 50%. It is so large that the Dr speculates it had been forming for months. There is a surgical procedure they can do to remove the clot - but it is way too serious of an operation for Dad to do in his condition - it is the same as having open heart surgery (they would actually have to stop his heart). They don't even do this surgery here in Arizona - it is done over in San Diego at a hospital that specializes in that type of Pulmonary Embolism surgeries.

After his return from the hospital Dad also had a cold. He took sudafed and a strong cough syrup (Protuss) with Codene. The cold is just about gone right now, and Dad has been feeling a bit better.

The list of medications continues... Dad also was taking Lasix after his return home - to help with all the swelling in his legs, feet, and hands. With Lasix, they had Dad take Potassium to supplement his levels. He was also taking Mycostatin - for the thrush on his tounge. The amount of Lasix they give Dad depends on how much water he is drinking - if the Lasix dose is too high, and Dad dosen't drink the right amount of water, his internal organs (kidneys etc) could get dehydrated and not function well. So that is another thing they will monitor each time we see the Dr.

Dr Forseth also wrote orders for a Hospice Nurse to visit the house. Dorothy came over the first time on Thursday the 27th and met with Patti. On Jan 2nd, another social worker from Hospice came over - Debra. I think a nurse will be stopping by on a weekly basis to check on the family. Patti said that a Hospice minister would also be stopping by in the next week or so. All good things as we are not sure exactly what is going on with Dads health - and it helps to have others here to listen and offer support.

Since Dads return home from the hospital he has felt pretty tired and worn out every day. He takes a short nap in the morning and about a 2 hour nap in the afternoon. He is sleeping good at night most of the time which helps too. Hopefully as the blood thinning meds take action on the clot - his breathing will get easier and easier, and his energy will start to return.

Patti decided not to return to work after the holidays - with all the medications Dad has to take, the time it takes to get Dad up and around in the morning, and the fact he shouldn't be walking around the house alone, she decided it would be best. She took a leave of absence from the school, so can return at anytime.

We take Dad to see Dr Rekate tomorrow at noon. He will get his stitches out from the brain surgery and we will find out the next plan of action.

Patti's twin sister Jan is here from Kalamazoo right now. Visiting for 3 weeks - which is awesome!!! She will help Patti out with everything around the house and with watching Dad. I'm sure we will have some fun family times over these next 3 weeks!!!

Thats all for today - hope everyone is doing well!

Love, Sheri

Thursday, December 27, 2001 at 12:58 PM (CST)

Happy Holidays everyone!!!

Our family got the BEST Christmas present of all on Christmas Day - Dad came home from the hospital!!!

We thought he was going to get out the day before, but Dad had a set back on Sunday that prevented his return home. Patti had spent the night at the hospital on Thursday and Friday nights, so I spent the night Sat night. Dad had been waking up each morning around 5:30-6am, but on Sunday he slept until 7:30. When he woke he was not feeling well, and did not want coffee or breakfast. I knew something was wrong and told the nurse. He was acting/feeling like he has in the past when his steroid dose was too low. Dad was asking to see the Dr. (Dr Forseth). Another indicator Dad was not in good shape, as he never asks for the doctor like that. Long story short, the neurosurgeon on call came in and took a look at Dad. He determined the steroid dose was dropped to quickly after the surgery. He ordered an IV dose of 10mg of steroids at about 10am. He also ordered an IV of fluids, as Dad was dehydrated. Dr Forseth also came in and saw Dad - and agreed about the steroid dose. They would now have Dad on a daily dose of 16mg of steroids (as opposed to the 1mg dose they had dropped him to!).

Dad slept for most of the morning and into the afternoon. By 3pm he was feeling "1,000% better". The doctors agreed to keep Dad on the 16mg/day dose for awhile and then slowly taper down. Dr Forseth told us on Sunday that they would need to keep Dad until Tuesday for sure - and there was a 50% chance he could go home that day. We were all bummed, but knew it was the best for Dad. Even Dad agreed.

By Monday Dad was feeling back to where he was before Sunday morning. Still out of breath most of the time and very tired, but much more coherent and awake. Dr Forseth ordered special stockings for Dad, and they arrived Monday. They are very tight and go from the top of his thighs down to the tips of his toes. He is supposed to wear the stockings every day while he is awake. The stockings are to keep the circulation going in Dads legs to prevent more clotting.

Monday evening we had Christmas Eve dinner in Dads room - Kentucky Fried Chicken!!! We brought all our Christmas presents up to his room for the next morning - the room looked very cozy and festive!!! Megan and I left around 8:30pm and Patti stayed there overnight with Dad. Megs and I came back on Christmas morning at 8am. We had a wonderful morning opening gifts - but the best part was we were all together, and Dad was feeling good. Dr Forseth came in the room around 9am - and gave us the great news - Dad could go home!!! If it wasn't Christmas Day, they probably would have kept Dad, but Dr Forseth said it was OK for him to go home as long as he didn't try to do too much too soon.

We were out of there by noon, and Dad was so happy to be home!!! We enjoyed a wonderful Christmas dinner - provided by all the people at IKON who chipped in and got us a gift certificate to the Honey Baked Ham company!!! Thanks to Rudina Jacobs at IKON for arranging all of this - it was absolutely wonderful. Dads boss at IKON, Jaime Leija, also arranged a BIG surprise for Dad - that we showed Dad on Christmas afternoon. They made a video for Dad of all the Facilities Management sites he used to work at, with interviews and funny clips from people he worked with!!! Thanks to Steve Fetty at IKON for all his hard work in making the video - I understand it took him the whole day to make - and it turned out awesome! As Dad was watching the video he just kept saying "Wow, wow, wow...". He was really touched and was so happy to see all the familiar faces he misses so much. Thanks IKON!!!

Now that Dad is home, there are so many things to arrange and manage with the blood clots/ medicines/ blood draws/ stockings/ etc... Patti is doing a great job of getting everything under control - and I will explain all that is going on with his care in my next post.

I hope you all enjoyed a wonderful holiday - we give thanks every day for everyones prayers and support - it means the world to our family.

Love, Sheri

Friday, December 21, 2001 at 12:31 PM (CST)

One week since my last post, and lots of news to report!

Dad had his 4th brain surgery Monday at 3pm. He was in surgery until almost 7pm and then in recovery for another hour. We were able to see him in the ICU at about 8pm. Dr Rekate reported the surgery was a big success! He was able to remove about 80% of the tumor tissue without touching the speech area of his brain. Dad woke up and was able to talk just like before the surgery and move all his arms/legs. Yes!! He looked pretty swollen in his face/head right after the surgery, and we could tell another black eye was on its way. Dad said he felt great though, just tired and a bit groggy from the operation.

Tuesday was spent in the ICU. He sat in a chair for a few hours which was a good "change of pace" for Dad. (That is one of his favorite sayings these days :)) They moved Dad out of ICU and into a private room on the 7th floor at 8pm Tues. night. Dad had a post surgery MRI Tuesday am and Dr Rekate was very pleased with the results. He said there was literally no pressure on Dads brain right now, due to the removal of all that tissue (about the size of a baseball!) and it will allow Dad to dramatically drop his steroid dose. Dr Rekate ordered the steroid dose to drop from 12mg per day down to 6mg per day starting Wednesday.

Dad was feeling good - the only issue still pending was the shortness of breath. At this point after all the other surgeries, Dad has always been very anxious to return home. Wed am he told me, "I am not leaving here until they figure this breath problem out".

Dr Rekate addressed the breathing problem right away on Tuesday -asking us if Dad had ever been seen by Dr Forseth while he was here in St Joe. We said no, who is Dr Forseth? Turns out Dr Forseth is a Pulmonary Dr who specializes in the ICU and assists Dr Rekate. Dr Forseth asked Dad a bunch of questions Tuesday afternoon - about the shortness of breath problem - and right away the tests began. Dad had an ultrasound of his chest and also an X-ray. They were able to do both tests right there in his bed in the ICU. The next morning (Wed) the tests started again bright and early. I arrived at the hospital at 7:30am to find Dad already gone from his room. I found him on the 4th floor doing a Pulmonary Function Test - he had done this test twice before while he was doing the BCNU chemo treatments. This test is alot of work for Dad - lots of breathing in and out - but I found Dad in the chamber, cracking jokes with the nurse. Good ol' Dad! We returned to Dads room after the test and waited for the next test. In the meantime Dad did a breathing treatment (starting Tuesday he does these 4 times a day for 5-6 minutes at a time). The breathing treatment consists of Dad breathing normally through a long tube that is filled with oxygen and medicine to help open up his airways. He looks like he is smoking a long cigar. Dr Forseth stopped in at this point and said "Butch, you keep passing all my tests, its making it hard to figure out what is wrong here!" He said the next test Dad would have is a "special Cat Scan" that shows more detail in the heart/lung area. Soon after Dad was off in the wheelchair for the special CT test. We returned to the room just before lunch. Dad took a quick nap and then his lunch was delivered. He ate his lunch and then I ran across the street to the deli to grab a sandwich. Here's where the @#%* hit the fan!

My cell phone rang and it was Patti - she had been talking on the phone to Dad in his room when the doctors came in. One of the docs (not Dr Forseth) got on the phone with Patti and said they had found what is wrong - he has a small clot in his lung, but its not an emergency. Just as I hung up the phone with Patti, my cell rang again. It was Dad. Before I could even say hi, he said "Get back here quick!!!" I bolted across the street and up to the 7th floor. As the elevator doors opened to the 7th floor, there was Dad, his nurse, and Dr Forseth. They were taking Dad down to radiology right away. Turns out the clot is his lung was "very impressive" as Dr Forseth described ( in our terms...huge.) We got Dad down to radiology - all the while Dr Forseth was explaining to me what was happening. First they had to scan Dads legs for additional clots, because that is most likely where the clot originated. Next, they would surgically implant a filter into Dads groin...which would block any future clots from his legs from traveling up to his heart/lung area.

I stayed in the room with Dad while they scanned his legs (it was just like the ultrasound they did on his chest). They found a big clot in his left leg. The other leg looked good, but they suspected there was a clot there, and it had broken free and traveled up to his lungs. While Dad had the filter implanted into his groin, Dr Forseth took me into a room to show me on a computer, the clot in Dads lung. He explained it was very large, almost a foot long, and that most likely had been there since October. He said they were all amazed at this, because Dad showed no symptoms of someone who has a clot this big, and in this location. He said most people with something like this would barely be able to walk, always be completely out of breath, and would feel as if they just ran the 100 yard dash all the time. He said that is why this was so hard to discover with Dad - the symptoms were just not there.

Dad is lucky to be alive right now. People who have clots like this can die in an instant - I think its called a pulmonary embolism. But Dr Forseth said Dad has been "tolerating" this clot for some time now, so the risk of him dying from it is not extreme. They are taking some drastic measures with Dad these next few days though. Dad is on complete bedrest for 2 full days, with as little movement as possible. Blood clots like this are treated with blood thinning medications - but because Dad had surgery Monday, they can't give him full doses of these meds until Sunday. So in the meantime, we don't worry about the clot in his leg - because if it breaks free, the filter should catch it. As far as the clot in his lung goes,we have to wait until Sunday to hit it with the blood thinners. Dr Forseth visited this morning and explained it is simply a waiting game right now - just keep Dad off his feet until Sunday. They are giving Dad Lasiks right now - like a water pill - to help drain all the excess fluids from his body. And they are giving Dad 2 shots/day in his stomach - a very mild blood thinner - to start working on the clots.

Dr Forseth said this will all take a couple of weeks to take care of, but he assured us Dad will be home for Christmas. Once the blood thinners are given in full doses, he said Dad needs to have someone by him all the time - because if he fell or cut himself, it would be a major problem. He said once the clots are broken up, all the symptoms Dad is having should go away - the shortness of breath, blurry vision, etc.

Patti spent the night here with Dad last night and will again this evening. This has all been a bit un-nerving to say the least - and having Patti right here with him at night makes Dad feel better.

I am here with Dad right now, and he is resting peacefully. Either Patti or I will be here with him at all times, so he is never alone.

It will be nice to get Dad home - probably Monday morning Dr Forseth thought. And what a relief to finally have the shortness of breath mystery solved - who would have thought it would be so serious, but thank God it wasn't more serious.

When we found out all this info yesterday, Dad said "I knew it!!" He had been telling us for a MONTH there was something wrong in his chest - and we kept telling the doctors... it makes us all mad we didn't find this sooner. But I guess because his symptoms weren't the classic big blood clot symptoms, they just never thought to do the "special" CT scan.

Thats it for today.... we just need to plug away through these next 48 hours... and PRAY for the clot to stay exactly the way it is!!!

Thanks for your continued prayers!!!

Love, Sheri

Friday, December 14, 2001 at 12:27 PM (CST)

Just updated this yesterday, but thought I should update again right away since we have news to report!

Had the appt with Dr Rekate this am. He confirmed that Dads tumor is 25% or more larger than what it was right before the last liquid radiation treatment. Its tricky though, because it could be mostly dead tumor tissue... they don't know for sure. He said Dad did not qualify for the second treatment based on this, and also because of his overall health. His body could not handle another treatment right now.

Dr Rekate explained there are 2 options right now... 1- do nothing and 2- do another crainiotomy (surgery) to debulk the tumor. The second option would give Dad relief from all the bad symptoms he is having right now due to the high doses of steroids. All the symptoms he is having are related to the steroids - swollen feet, blurry vision, dizziness, shortness of breath, and weight gain. By debulking the tumor again, Dad can drop his steroid dose down, and "enjoy a better quality of life". Dr. Rekate knew our answer before we said a word - he said "knowing you and your family I would strongly recommend having this surgery."

Dad will have his 4th operation this Monday December 17th. The surgery is tenatively scheduled for 4pm - but he could go earlier if something frees up in Dr Rekate's schedule. We will be at the hospital at 8am - Dad will have his MRI at 9:30am and then be ready to go.

Dad is very happy with this decision today. Dr Rekate commented on how amazing it is that Dad is as strong as he is - he said given the size of the tumor and the location, Dad should be having problems with his arm and leg on the right side. So far, Dad has had no major problems at all - he leg does get weak at times but thats it.

Another thing Dr Rekate mentioned was that it is possible that down the road, Dad may be able to have another liquid radiation treatment... depending on how he does after this surgery, etc. We thought he wouldn't be able to - because the treatment is not yet FDA approved, and he would need to be a part of the "study" to get it. We will discuss this with Dr Shapiro next time we meet with him.

We will all rest easy this weekend with the good news from todays meeting. We were all worried the only answer was going to be "we can do no more". But no! We press on - and Dad is up for this 100%.

I hope everyone enjoys a nice relaxing weekend! I will update again after the surgery is over. I am still taking next week off work, so will spend lots of time with Dad in the hospital. Most likely he will return home Thursday.

Happy Holidays to everyone! And a BIG happy birthday to Dads big brother Uncle Jim!!!

Love, Sheri

Thursday, December 13, 2001 at 03:23 PM (CST)

Hi everyone....I really thought I would have much more info to report by now... but I don't! My last post was on Dec 6th - and we were waiting to hear what the "fullness" in Dads chest was, and if he would have the second Monoclonal Antibody treatment. It has literally been a crazy waiting game since then.

Dad went to get the CT of his chest on Monday morning 12/10. Patti and Dad hand delivered the films to Dr Shapiro's office in hopes we would get an answer asap. We did not hear anything until yesterday afternoon! We left messages all over the place trying to get someone to call us back. Needless to say, Dad was anxious and not too happy about the non-responsiveness of seemingly everyone. Patti got the call from Selma yesterday and the information (she could provide us) was vague.

The "fullness" in Dads chest is mostly fatty tissue and possibly swelling from the high doses of steroids. Thats all she said about that. Dad is still having lots of trouble breathing normally, so not sure if there is something they can do about this or not.

Selma also said Dad will NOT have the second treatment. Originally she thought he could have it, based on her measurements of Dads tumor size after the last MRI. Now, after the official report came back, IT shows the tumor is 25% or more larger than it was on the MRI before his last Monoclonal Antibody treatment - which disqualifies him from the study. The tumor board met on Monday and discussed this - but we never heard the results from their meeting.

What does this mean? I do not know. We were told Dr Rekate would call us and explain. After leaving his office 3 messages, we now have an appt to see him tomorrow 12/14 at 8:45am. At that appt I KNOW we will get some answers. Who knows what kind of answers, but at least we will be out of the dark, and know what Dad is facing.

Sorry I don't know more right now, but as soon as I do I will update this again!

Dad wanted me to make sure to tell everyone he worked with at GTech THANKS SO MUCH for all your notes on his guestbook! He was so surprised to hear from so many of you, and it really has made him smile. Dad really enjoyed working with all of you at GTech, and he says to say HI!

Dad is still extremely tired. He is now at 12mg/day of steroid. Patti and I think we will keep him at that dose until we are told otherwise. Maybe keeping it consistent for more than 3 days will help a bit. His feet are swollen so large these last few days we can't even fit socks on his feet - he has been trying to keep them up high as much as possible - but his BUM gets sore sitting for so long! :) We don't know why his feet are so swollen - and will try to get an answer/help on that tomorrow am.

This Sunday am Dad will get a nice one hour massage right there at his home. Hopefully that will make him feel a bit better!

Also, thanks to Shalegh Ryan from IKON - she made our family a homemade meal that looks delicious for tonights dinner! Thanks Shalegh!

I'll sign off now, as I will most likely be posting again tomorrow or Sat am at the latest.

Happy Holidays to you all!

Love, Sheri

Thursday, December 06, 2001 at 11:42 AM (CST)

On Sunday the 25th of November, Patti and I decided to drop Dads steroid dose down from 24mg to 22mg per day, in anticipation that Dr Shapiro's office would have us drop the dose the next day. We called Shapiro's office Monday am and finally heard back late Monday afternoon - drop the dose by 2mg every 3 days. So he did 22mg/day 11/25-27, 20mg/day 11/28-30, 18mg/day 12/1-3, and is now at 16mg/day thru today. We will stop lowering the dose when he gets to 10mg/day, which will be on 12/13.

Tuesday of this week was a LONG day for Dad. He had his MRI at 9:45am, a chest x-ray, an EKG, and then the 2 doctor appts. Dr Brachman was at 1:30pm and Dr Shapiro was at 3pm. Luckily Dad was able to go into each of those Dr. appts early and lay down on an exam table with the lights out - to get a bit of rest! The purpose of this day was to measure Dads health and see if he will qualify for the next liquid radiation treatment. The drug company (Peregrine) in charge of the study Dad is participating in has certain criteria Dad has to meet in order to have another treatment - tumor volume must be no more than 25% greater than the last treatment, and a rating of his overall health in which he must score 60% or better. In addition, we the family need to agree that Dad will have the treatment. Thats where this all gets a bit fuzzy.

Dr Brachman (who is the Radiation Dr) evaluated Dad and was concerned most about Dads shortness of breath. (He has been having this symptom for a couple of weeks now). They didn't have the results of the chest x-ray, so didn't have much to go on. He had Dad walk a couple of laps around the nurses station - and measured Dads O2 (Oxygen) saturation in his blood - before and after the walk. It was good. His heart rate/pulse was good - a bit higher than normal, but not out of the ordinary. He discussed having Dad go see a pulmonary specialist to get a better idea of why Dad is short of breath all the time. He commented on the MRI from the morning, saying it showed a bit of enhancement from before the last treatment. Couldn't say for sure what the enhancement was, but that is was out of the area the tumor was before. It could be new tumor growth, or just dead tumor cells. The swelling looked better than the last time he was in the hospital on Nov 16-19th - which is good. The high doses of Decadron did the trick, so far. I left Dr Brachman's office with the feeling he was not thrilled about the idea of Dad having the second treatment. He said he would call Dr Shapiro and they would discuss it.

Dr Shapiro had another opinion. He was encouraging the second treatment. He said there was enhancement on this MRI - estimating it to be about 5% greater. (Great, what the hell does that mean!) Its crazy - we sit there and listen to these guys, and they don't know exactly what it is they are looking at - new tumor cells, dead tumor cells, etc. Our guess is as good as theirs... so we sit there with blank stares wondering if we are making the right decisions or not! Its nobodys fault, its just that there is not enough scientific research on these types of tumors to know exactly what is going on, and what to do. Dr Shapiro said the treatment kills tumor cells - bottom line. So if Dad is up for the treatment, then he should do it. (My concern was - great, but is this treatment going to make Dad even worse than he is now - to the point where we could lose him?!) Dr Shapiro can't answer that question, everyone is different and handles the treatment in a different way. There are no stats for us to study. Basically its up to Dad. Dr Shapiro said it is hard to know for sure what Dad wants - he said he couldn't understand or believe everything Dad says - so asking him directly was not in the cards. He was comfortable with whatever Patti and I decided. Well, thats tough, as we don't want to make the decision without Dad! So we left, with the idea we would roll it around, talk with Dad about it (we can talk to Dad and he DOES understand whats going on - sometimes it takes a bit to sink in, but I know he is understanding) and then would let them know. We did say to Dr Shapiro - Dad has always wanted to fight this thing - so if you think it is the right thing to do, then go for it. ( I should have asked, if this was you, would YOU do the second treatment?)

Selma (the clinical research nurse in charge of the study) still had to calculate all the figures from the MRI and the health data - so we left not knowing for sure even if we did decide Dad wants to do the second treatment - does he QUALIFY. Basically, we are ALL dazed and confused at this point!

I talked with Selma this morning - to see if there is any news on if Dad qualifies. Turns out the chest x-ray came back with an area showing a "fullness" in the area where his trachea/windpipe is. I asked 20 questions about this, but Selma could only tell me she had no idea what it is - and that Dad will have to have a CT scan of his chest in order to determine. This will happen tomorrow or Monday. Based on the answer to that, we/they will decide if the second treatment is a go or not. This will most likely explain why Dad has had shortness of breath...now its the @#$% waiting game to figure it out!!!

How has Dad been doing since my last report? Well, in a nutshell - he's TIRED. No energy in his legs/arms, breathing is hard, he is dizzy all the time, his legs, belly and face are swollen from the high doses of steroids, his appetite is still good, and he has been sleeping alot. Takes 1-2 naps per day and sleeps at night from 8:30pm to 6 or 7am, sometimes later. He is still a TROOPER though - he forces himself to walk around the culdesack as many times as possible every day - he is up to 3 times now! He goes on rides with Patti while she runs errands in the afternoon. Still makes it up the stairs every night for bed. He took Patti to an anniversary dinner on Friday Nov 30th - it is their 17th year together!!! He was totally exhausted that day, but mustered up the energy and they had a wonderful romantic dinner at a great little family owned Italian restaurant near home. He is up every morning with Patti and Megan -he showers and then sits at the kitchen table while they get ready for school - still egging them on about being late and to hurry it up!

Dad is ready to get some strength and energy back - we are praying for this to happen any day now!!! Maybe as the steroid dose decreases, he will feel better and better. The best thing is Dad is not in any pain what so ever - he justs needs a big energy boost!

I'll update again as soon as we hear back about the CT scan for his chest.

Lots of Love, Sheri

Saturday, November 24, 2001 at 04:13 PM (CST)

Helloooooo! Hope everyone had a great Turkey Day!

Dad, Patti, Megan and I enjoyed a quiet, relaxing Thanksgiving Day. We had so many things to be thankful for.... that Dad was home from the hospital, he was feeling better and able to eat Thanksgiving Dinner with his family at the dining room table (funny how those little things mean SO MUCH these days), for our wonderful support group of friends and relatives from literally ALL over the world who have helped us through these last 10 months, for the skilled doctors at Barrows Neurological who have given Dad excellent cutting edge care, for Patti's health and freedom from her cancer, and for GOD who has given us strength day in and day out.

Back to where I left off on Monday - the Hospice nurse came and discussed their role in Dads care. We needed to make a decision to continue with Hospice or not - as Hospice is "end of life" care, and if we are continuing any type of aggressive treatments with Dad, then Hospice is not the answer right now. Given the fact we know Dad wants to fight this to the finish, we had an easy decision - we hold off with Hospice for now (and hopefully for a LONG time). I was so thankful for their help, but watching that lady leave our house made me want to jump for joy.

Dad spent the week taking lots of naps and slowly trying to walk around more to build his strength/endurance. He has made it up the stairs every night for bed - slowly and carefully! We do have a small twin bed now down in the living room - it is perfect for his naps during the day, and is good just in case he dosen't feel like making the trek up the stairs one night. The twin bed is also perfect because it is a trundle bed, so if Dad does sleep downstairs Patti can stay down right next to him. I know he likes that.

Dad is still on 24mg of steroids daily. 4 doses per day - 12am, 6am, 12pm, and 6pm. We will check on this with Shapiro's office Monday am as I believe he mentioned in Dads hospital room to drop it to 16mg after a week.

Dad seemed to get more and more tired as this week progressed. He would say he was "so tired he could barely move". Hopefully this is still effects from that Liquid Radiation treatment and will pass. Today Dad says he actually feels better - more energy, etc. Yeah! Keep it up Dad.

On Thanksgiving Day we took Dad to the park by his house and wheeled him around for some fresh air. He got up and walked around as much as he could. He watched Megs, Patti, and I feed the ducks, jump rope, and bump the volleyball back and forth. It was a beautiful sunny day to be outside. Our dinner was the traditional yummy turkey dinner with all the fixins. We enjoyed a delicious homemade PECAN PIE from Rudina Jacobs (worked with Dad atIKON) for dessert. Thanks Rudina! Aunt Pat had emailed us all her notes from the Brain Tumor Symposium she attended in Minneapolis - so we read all her notes to Dad - very inspirational and informative Aunt Pat. Thank you! I want to attend that next Symposuim for sure.

We are hoping Dad will get more and more energy every day. No doctor appt's scheduled this week - December 4th is the next big day - we will see if Dad qualifies for a second Liquid Radiation treatment. I am on the fence about that treatment, scared to have Dad go through another exhausting week just when he is starting to feel better. I will pray for the correct decision to be made.

Peace be with you!!! Love, Sheri

Monday, November 19, 2001 at 02:45 PM (CST)

Well its been a crazy few days to say the least!!

Friday morning Dad was about the same as Thursday...VERY out of it, and still in bed. Patti and I knew we had to get him to the hospital, as he had not been out of bed since Wednesday night. Patti had called Selma on Thursday and she had contacted Dads doctors. Dr Shapiro was out of town, so she wanted us to take Dad to the St Joe ER if we needed to bring him in.

Luckily Dr Rekate's office found out about what was going on with Dad and we got a call from Dr Rekate himself early Friday am. He said the discussion/decisions we needed to have/make were not ones to have over the phone - and that it would be best to get Dad into the hospital. His staff would get a bed reserved immediately in the Barrow ICU and we were to check him in thru the ER. Upon arrival Dad would get a CT scan to see what was going on, and then go to the ICU.

The challenge at that point was getting Dad from the bedroom (which is upstairs) to the ER. We were told to call 911 and get an ambulance; but Patti and I were not crazy about that idea, knowing it would probably scare/confuse Dad in the state he was in. We ended up calling the neighbor and my friend James to come over and help... they got Dad out of bed and into the wheelchair. They carried Dad down the stairs and put him in my car. Dad rode in the backseat with Patti and we made it safely to the ER. Through this whole process we just kept telling Dad we were taking him to the doctor to make him feel better..and he seemed to be OK with only that explanation.

He was admitted to the hospital through the ER and taken right up to his room in the Neuro ICU. They gave him an IV with fluids for his dehydration and also 10mg of steroids (Decadron). At this point Dad was still very much out of it, and was not responding to questions or focusing his eyes on any specific object. Next, they took him away for his CT scan. He returned in about 15 minutes, and Dr Rekate was there to see us a few minutes later. It was amazing how fast everything was being done! Dr Rekate asked to have Patti and I talk with him first, and then he would talk with all of us (Dad too). By this time Dad was coming around a bit - the steroids/fluids were making an obvious impact.

Dr Rekate took Patti and I to a small conference room where we all sat around a small table. Talk about NERVOUS STOMACHS!!! He said the CT was better than he thought - it looked as if this problem was due in the most part to ALOT of swelling, not tumor growth. (YAHOOOOOOOOOOOOOOOOOOOOOOOOOO!!!) This swelling they usually can control with increased dosages of steroids. He said there was most likely some Necrosis in there too - dead tumor tissue. The big question at this point was - should Dr Rekate operate on Dad, making more room for this increased swelling or should we wait and see how Dad reacts to the increased steroid dose. If Rekate operated, he would remove all the Necrosis possible, and also would remove the frontal lobe of Dads brain. This part of the brain can be removed with minimal risk. However there was risk of increased aphasia (memory problems). After much discussion of the pros and cons we decided to wait until Monday, see how Dad was doing, and if the improvement was not good, then operate. If an operation was in order it would happen on Monday (today).

So thats how we left it - another waiting game - but we were OK with it because the thought of Dad having another surgery so soon was disturbing. Dr Rekate came in and saw Dad again after our discussion and told Dad what was going on. He tried to get a feeling for how Dad felt about our decision, but Dad was still pretty out of it. We were not sure how much Dad was understanding at this point. The swelling had caused major pressure in Dads head, causing him to have the bad headaches, and finally putting him into this almost comatose state of mind. Dr Rekate was comfortable with our decision, knowing Patti and I were representing Dads wishes.

By Friday night Dad was doing better - they moved him out of ICU and into a normal private room on the 7th floor. He still had the IV with fluids and was now getting 6mg of steroid every 6 hours. Dad ate for the first time since Wednesday night - started with a liquid diet. His appetite came back quick though, and by Sat am he was hungry as a horse!!! Saturday was even better - Dad got out of bed and walked to the end of the hallway 2 times. He was eating normal food and talking up a storm again. He did not remember anything from Wednesday night to Friday night - it was all blank for him. You should have seen his face when we told him how he was carried down the stairs in the wheelchair. Sunday was a good day too - we wheeled Dad outside for some fresh air and he went on 2 more walks.

I arrived at the hospital this morning to find Dad all prepped and ready for surgery. To put it mildly, he was not happy about all this. He had already been down at 6am for another MRI (he had one Sat am too) and had the green vitamin E chips on his head. They had stopped his food/liquids intake at midnight, so his throat was so dry he could barely talk. He told me right away he did not want to have surgery - and that he never complains but right now he had to because his throat felt like it was closing shut.

While Dad was telling me all this, Dr Shapiro walked in the room. He said he looked at the MRI from Sat am and the one from Oct 8th (right before the Cathedar treatment/infusion). He said he did not see any enhancement in tumor growth (YAHOOOOOOOOOOOOO again!) and that he did not think Dad needed surgery today. He said the swelling is normal after the Cathedar treatment - the high dose of radiation causes it - but he had never seen the reaction take this long to happen. He was weaning Dad down from the steroids, thinking Dad was out of the woods for swelling, but the reaction happened later that it has ever happened before. So when Dad started reporting headaches over a week ago, we should have saw it as a sign of swelling/pressure. The problem is Dad never says much when he is in pain, so I don't think we knew how bad it was until it got so bad Dad couldn't communicate.

Dr Shapiro said Dad looked great - and that he would go talk with Dr Rekate and they would decide the final verdict. We were so excited to hear the news about the tumor - it seems to be in check! The 24mg/day steroid dose worked quick and Dad is back to how he was a couple of weeks ago.

About a hour later Dr Rekate came in and was very pleased to see how great Dad looked - I think he couldn't believe how well Dad looked in fact. Dad was in his joking mood and had us all laughing, commenting on how long it took for Dr Rekate to arrive, etc. Dr Rekate said he was more than OK with no surgery today... and that Dad should just continue on the increased steroid dose for awhile and then taper down again in a week or so.

So now we are HOME!!! Dad is resting on the couch and Patti and I are working on setting up the house to make it easier for Dad. The hospice nurse has just arrived, so I need to run...

I will update more in a couple more days.

Thanks for your prayers, THEY ARE WORKING!!!

Love, Sheri

Thursday, November 15, 2001 at 11:52 AM (CST)

Today Dad is not doing so well... it has been a rough week for him. I got a call from Patti early this morning that Dad had a rough night last night... his legs are so weak, and he is very dizzy, so everytime he has to get up in the middle of the night it is a major ordeal. He has to go the bathroom, and then gets stuck because he can't get back to bed. Dad is a big guy, so Patti alone can't support the weight of his body to get him back in bed. She ended up getting him back into bed using a walker. I went over this morning - was already planning on going over, as Dad and I were going to do our weekly donut and coffee at the local supermarket, but after Patti's call I knew we wouldn't be going.

Dad was in bed and sleeping soundly. Patti had spoke with Selma, the Clinical Research Nurse, and she suggested giving Dad a large dose of steroid - 10mg. Patti had already gave Dad 4mg, so she gave him another 6mg. She will give him another 4mg later this afternoon, and then 8mg tomorrow - 4 in the am and 4 in the pm. We now just have to wait and see how he responds to the increased dosage's - and go from there.

For the past 2 weeks Dads speaking and memory have been getting worse. He also has been having a daily headache in the am since this Saturday. We have been giving him 2 aspirins and that usually does the trick in an hour or so. His legs are extremely weak, and we have noticed he has been shaking a bit now and then. His breathing gets very labored at times, especially when going up the stairs to bed, or while he is eating. Sometimes it happens just while he is sitting in his chair.

Believe it or not, Dad still has that great attitude - the fighter mentality. He does get mad/frustrated when asked to use the walker - he just doesn't want to have to use it. Patti and I talked alot this morning, about the possibility of setting up a bed down in the living room, so he won't have to go up and down the stairs. We also talked about calling Hospice - to have a preliminary meeting and have them come look at the house. Maybe they could offer some additional suggestions/help with making life easier for Dad. Patti and I both agreed that we have been avoiding this phone call, we don't want to admit it is now to this point... but it looks like the time is here. Who knows, maybe Dad is just in a low period and will come out of this and plateau again for awhile - THATS what we are praying for...but who knows! We are both ANGRY that we can't help Dad feel better right now - just give him a few great weeks where he can walk around like normal, talk like normal, feel like normal...how precious that concept has become.

I will update again in a couple of days, to let you all know how the increased steroid dose worked. Tomorrow Patti and I will set up the bed downstairs, and hopefully get some other things from the Cancer Society to help Dad - a higher toilet seat, shower seat, etc. Patti took the day off work today to watch Dad, so he is in good hands all day.

Keep up those prayers and positive thoughts for Dad!!

Love, Sheri

Friday, November 02, 2001 at 03:36 PM (CST)

Hello all, sorry for the long delay in getting this updated with the latest scoop!

How about those AZ Diamondbacks...I think it is safe to say we all have a big pit in our stomachs right now - they better pull it out this weekend!!!

Dad has been doing well since his return home from the hospital in mid October. There are good days and bad of course...some days he has lots of energy and others he is weak and tired all day long. He has had a weekly doctor appointment to track how he is doing...and the reports have all been good. Both Dr Brachman and Dr Shapiro agree that Dad is doing better than expected after the Cathedar treatment. "Doing better" in terms of his speech, strength in his legs/arms etc. Dad always says he feels pretty good, no headaches or anything like that - he just feels tired and weak most of the time.

His appetite is still going strong, and Dad continues to watch the amount of food he eats. Just this week Dr Shapiro decided to try to drop Dads steroid dose down a bit more to 4mg per day - he was at 6mg. So now he takes 2mg with breakfast and 2mg with dinner. It usually takes 3-4 days for the effects of the decreased dose to hit, so we will know today or tomorrow if Dad can handle the lower dose. He keeps saying he will handle it no matter what - and so far it looks like he will! He is very tired today - more than usual, and also has a dizzy feeling with every move. Hopefully as his body adjusts itself to the lower dose, these symptoms will subside. If not, he will have to go back to 6mg.

Dad and I were lucky enough to attend last Sunday's World Series game...compliments of IKON Office Solutions! I am so thankful I work for such a wonderful, caring company (Dad used to work there too before the tumor - and he is missed by many!). We had great seats in the Infinity Diamond Level right in between home plate and third base. We were concerned about the amount of walking Dad would have to do, so we ended up using a wheelchair - and SO glad we did that! We sat in our seats for the first four innings and then Dad watched the rest of the game sitting in the wheelchair. The stairs up and down from the bathrooms were too much... so the people at the ballpark were very accomidating. It was a super game - Dad and I enjoyed every minute; the intense cheering, Ray Charles singing the National Anthem, the hotdogs, the beer, the ice cream, and on and on! Dad said on the way home from the game (and we stayed until the very end!), "that was the most OUTSTANDING baseball game I have ever been to!!"

Dads next doctor appt is this Tuesday - just another progress check with Dr Shapiro. Then he has a one month break until everything starts all over again. December 3rd is the big day - and the 4th is the day we will know the results.

Patti has dropped her hours in half at work, so now she finishes her day at noon. Dad is VERY happy about this, as they can eat lunch and the spend the afternoons together! I can tell he is so glad she was able to do this.

Aunt Pat in Minnesota attended a Brain Tumor conference yesterday, so we are anxious to hear all about it from her. She has been just great in terms of keeping in the loop with the AZ Haukes and Dads progess. Nice to have family looking out for us - even if it is way back there in Minneapolis!! :) Love ya Aunt Pat! Thanks too for reminding me to get this page up to date!!!

Hope everyone is doing well - we appreciate all your loving thoughts and support as Dads journey continues....

One last note - GO DIAMONDBACKS!!!

Sheri

Tuesday, October 16, 2001 at 11:36 PM (CDT)

Dad is home from the hospital!!!

His radiation level dropped from "15" last Friday to "6"!! The Arizona State Law requires it to be at 7 or below in order for Dad to leave that room...so he passed that test earlier than we ALL thought.

So now he is home resting peacefully in his Lazyboy :). We were told these next 2 weeks he will be THE MOST tired ever - and given how tired he has felt in the past few months, it looks like this could be a rough couple of weeks for Dad in terms of energy level. Our family just needs to encourage him to rest rest rest ... and that is hard because our family is one that is always go go go!!! Dad knows he needs to rest though and I know he will take it easy.

We had a meeting with Dr Brachman (the radiation oncologist) this am, and he dropped Dads steroid dose down to 6mg per day - 2 in the am, 2 at lunch, and 2 at dinner. We will see Dr Brachman again next Tuesday.

I was also told today that Dad was a topic of discussion in "tumor board" Monday - tumor board is the meeting of all the neuro oncologists, surgeons, nurses, technicians, etc. that meet every Monday - the consensus was they were literally IN AWE of how well Dad was doing - compared to the other patients who have had this new treatment (there have been 5 others here at Barrow). Dads attitude is OUTSTANDING, he has great strength in his legs and arms, and his speaking abilities are really good given all the treatments he has endured. He feels good too - the only complaint he has is major fatigue.

Dad now has almost 2 months without another treatment... he will have various Dr appointments these next few weeks, and then his next MRI the week of December 4th. At that point they will decide (based on the results from the MRI) if Dad can have another treatment just like the one he had. The clinical trial for this treatment states the tumor must be the same size or smaller. So lets PRAY this treatment works for Dad and he can have the second one!!!

Thanks, Love, Sheri

Saturday, October 13, 2001 at 01:52 PM (CDT)

Just got home from visiting Dad this morning. The radiation levels in the room and in his body are still high - the Geiger Meter read "15" yesterday afternoon. Dad can't leave that room until the radiation level gets to "7". Dr. Shapiro stopped in while I was there this am and he said that meant Dad will have to stay until Wednesday or Thursday. Yikes! We never thought Dad would be in the hospital so long. Stuck in that room too - Dad must be getting cabin fever by now.

Dr Shapiro said that the positive aspect of this is that they know the radiation is working in there, and the thought is the higher the level, the better.

Its frustrasting for Patti and I though because we are only allowed to be in there for 30 minutes per day and can't touch him or get close. Also, EVERYTHING that goes into his room has to stay in there, so at times it has been getting a bit cluttered with bags full of trash, linens, etc. Dad hates clutter, and I could tell he was wishing the entire room could be cleaned out today. There are special yellow trash bags in his room for trash, etc. and the only guy who can remove it is the physisist who comes and takes the Geiger Meter reading.

Overall Dad has been doing awesome in spite of his living environment, etc. If ATTITUDE was the only factor in his getting better, he would be the healthy-ist guy in Arizona right now! Everytime I go in the room he is smiling, asking all sorts of questions about what I've been doing/ how I am - and never a complaint about being stuck in there or anything. He was a bit miffed this morning though - the nurse took an hour to bring him his coffee after he asked for it at 7am - and he one of those :) who needs his coffee first thing and wants it HOT. It came late and cold, so not a good way to start the day... I brought him a cup from the downstairs coffee cart, so hopefully that made him feel a bit better. Also the Diamondbacks should start soon (there is a rain delay right now) and he will be a happy camper watching his team for the rest of the afternoon.

So now Dad will spend the next few days resting, eating, watching TV, and enjoying (ha ha) visits from numerous doctors/nurses who come to check on him. Patti and I try to visit at different times each day so he at least gets a hour a day of GOOD company. He also has a phone in his room - so his brothers and sisters back in Michigan and Minnesota can call and chat with him too.

His memory is just OK. He has lots of trouble answering the questions the doctors/nurses ask - what day is it, where are you, etc. I know he knows the answer, he just can't find the words. He does better in casual conversation - and mornings are better than evenings. Some of this may never come back, and we all knew that, but OVERALL Dad is just doing great - he looks healthy, he smiles all the time, and his attitude is wonderful.

I LOVE YOU DAD!

Hope everyone is enjoying a super weekend - be safe!

Love, Sheri

Wednesday, October 10, 2001 at 10:15 AM (CDT)

So far so GOOD!!!!

Dads treatment began about 4pm yesterday - about a hour later that planned. Dad wasn't too happy as HE is ALWAYS right on time; so when they were running late, he began to get frustrated. But once it all got started he was OK.

The delay was because the frozen Cotera (the drug they inject) was not totally thawed out. People started arriving to help start the treatment around 3:15 - there was the head of Radiation Safety for the hospital, 2 Physisists (to set up the lead sheilds and check the room with the Geiger Meter), Dr Brachman, Selma (the clinical research nurse), the camera crew, and the lady from Peregrine. It was a FULL house needless to say. I felt so bad for Dad seeing him in there with all those people surrounding him and talking amongst themselves - he was just sitting there, with sort of a half grin on his face, just waiting for it all to begin. The actual "turning on" of the treatment only took about 5 minutes and was done by Dr Brachman and Selma. Dr Brachman did not want to be filmed, so he made the camera crew leave while he did his stuff. The treatment started and Dad reported he was fine and didn't feel a thing. They did give him Zofran about 10 minutes prior to starting to prevent nausea - and will continue to give it to him every 4 hours throughout the treatment. That is the biggest concern right now - he will get sick from the treatment and throw up.

I left the hospital around 4:30pm and Dad was resting very comfortably, getting ready to watch the Dbacks on TV. I talked with him this morning and he had a good night - no sickness at all!!! Phew. He said he didn't sleep very well and was up for much of the night, but other than that he was feeling OK.

I will go see him this afternoon. We are allowed to visit for 15 minutes per 24 hour period and when we do visit, we stand at the doorway and can see and talk to him from there. Its actually better than we all pictured - the lead sheilds are not as big as we thought and there is more space in the room. Dad can eat like normal and watch TV - so that will be the extent of his day today I imagine. The treatment will be stopped around 4:30pm today. We still won't be able to actually go in a give him GIANT hugs until later in the week - hopefully Friday.

I'll update more tomorrow....

Love, Sheri

Tuesday, October 09, 2001 at 11:07 AM (CDT)

Tuesday Morning... hanging out with Dad in his penthouse suite here at St Joe Hospital :) His room is up on the 6th floor of the Barrows Neurological Wing - nice room at the end of the hall.

Dads surgery to implant the cathedars went really well - surgery did not begin until around 12:30 yesterday, so we spent the morning doing lots of waiting. They did his MRI around 9am and after that we waited in the surgery "holding area". Surgery lasted about 3 hours and then Dad was in recovery for about another hour. We got to walk with him when they wheeled him into his room on the 6th floor - he was waving his arms and talking up a storm, so we knew he was feeling ok!

Today "THE TREATMENT" will begin at 3pm - it got pushed back a bit, but it also got reduced from 48 hours of treatment to 24 hours! They will give him the same amount of the drug, but will just give it to him at a faster rate. Should have seen Dads face when we told him this - SHEER HAPPINESS! He still will have to stay in the hospital the same amount of time - they think, but at least he will only be stuck in the bed for 24 hours now! (And the AZ Diamondbacks are on TV tonight, so Dad can watch his favorite team in peace :))

Dad had his 15 minutes of fame yesterday - the people from Peregrine Pharmaceuticals hired a production crew to film Dads surgery and the treatment... they arrived yesterday morning and interviewed Dad before his surgery. They filmed the surgery and did another interview with Dad after he was settled in his room too. They will take the material they filmed and add it to a previous show that aired on the Discovery Health Channel - making it a one hour show on this new treatment for gbm tumors. They will be back today to film the start of Dads treatment.

I just finished reading all the latest entries to Dad in his Guestbook - isn't it cool how technology allows this - I have my laptop hooked up here right next to Dads bed! He says THANKS EVERYONE for your kind words and prayers. He is in a great mood this morning - joking around with everyone who walks in the door and talking all the time. He ate a nice big breakfast (after not eating at all yesterday!) and is now sipping on a hot cup of coffee.

There is a nurse here in Dads room today - from now on he will have someone in here 24 hours a day - hired by Peregrine to watch/monitor Dad all the time. (Dads not to thrilled about this - when I got here this morning, he asked "is SHE going to be here ALL the time?") The answer was yes, but hopefully we will get her to take a few long breaks :) I expect they will have someone here until Dad is released from the hospital.

Better get back to Dad now... his treatment starts a 3pm and then Patti and I will have to leave :( Sounds like there will be alot of people in here this afternoon when IT all begins, so Dad will have an eventful day... and then be good and tired for a nice sleep tonight. Pleasant dreams of tumors shrinking for Dad, ahhhhhhhhh.

I'll update more later...he says HI!!!


LOTS OF LOVE, Sheri

Sunday, October 07, 2001 at 05:24 PM (CDT)

Sunday afternoon.... hanging out over at Dads. This will be the second time I typed this entry as somehow I typed the first one and when I went to post it, nothing was there!! rrrrrrrrr!!! :)

ANYWAY... Dad and I watched the AZ Cardinals this afternoon - they won their first game of the season! It was a good game to watch as they came from behind to win in the last minute of the game. Dad and I also went on a walk down the street to the stop sign and back. Dad didn't really want to go, but when I reminded him that he would be in bed for the next few days, he was up and out of the chair! His legs are very weak, making walking very tiresome. He knows how important it is to keep moving though, and is very good about going when we ask him.

Tomorrow is the BIG day...we need to be at the hospital by 6am. Sounds like they will be doing the surgery to implant the cathedars sometime in the morning and then we will be able to spend the rest of the day/evening with Dad - he will go into recovery after surgery and then right into his special room on the 6th floor. The treatment will begin sometime Tuesday morning. The drug "Cotera" that Dad will get through the cathedars is being flown in from Florida tomorrow - and is frozen. It will be thawed and ready by Tuesday am! Some people from Peregrine Pharmaceuticals are also coming in town to film Dads surgery and parts of his treatment. They will use the film to educate Doctors/Patients who will participate in future use of this treatment as it moves into the Phase 3 stage of the trial. Dad is participating in the Phase 2 stage and is about the 48th person to receive this treatment for gbm brain tumors in the USA.(Notice I don't capitalize the word "gbm" -learned this from another brain tumor survivor - it does not DESERVE to be capitalized, RIGHT!) Anyway, when Dad was asked if he would agree to be filmed by Peregrine, he quickly responded with "I will do whatever I can to help others beat this thing, so go right ahead!"

Beginning Tuesday, our visitation will be limited to 15 minutes per day with Dad. Megan cannot visit at all - as she is 13 and the doctors agreed it would be the safest idea. Patti and I will be able to see Dad and talk with him - there will be a wall in his room we will have to stand behind - but at least we will be able to see him and talk to him! Sometime Thursday morning the treatment will end, the cathedars will be removed, and Dad will be SO excited to actually get out of his bed! We were warned he will be extremely weak and tired though - so he will need to take it slow. They will test his radiation levels with the Geiger Meter and he will be released from the "special room" as soon as the levels reach normal range.

Dad received a care package from Aunt Pat yesterday - she had taped the entire book Thats Unacceptable, by Rebecca Libutti, for Dad to listen to while he was in the hospital! Thanks SO much Aunt Pat - where you found the time to do this is beyond me. When Aunt Pat was here a couple of weeks ago, she discovered Dad had only read half of the book because along the way he had lost the ability to read. She said "I'll take the book home and tape it for Butch!" That was quick Aunt Pat! And very thoughtful.

Tonight we will go to a GOOD LUCK dinner at Thomaso's - a nice Italian restaurant near Dads house that we haven't been to yet. Dad has been talking about it all day - naming off all the options of what he may eat for dinner - making my mouth water! He loves italian food, so I am sure he will come home with a nice full tummy tonight!

For GOOD LUCK, I also bought some stock in Peregrine Pharmaceuticals this past week. Its a bulletin board stock on the NASDAQ, so only is about $1.00 a share. Watch out Microsoft! :)

Dad is all geared up and ready for the challenge this week...thanks for your extra special thoughts and prayers and he goes through this scary, but very promising new treatment!

I will keep you posted as the week goes on to how Dad is doing....

GOD BLESS!!! Love, Sheri

Sunday, October 07, 2001 at 04:35 PM (CDT)

Monday, September 24, 2001 at 04:03 PM (CDT)

Dad came home from the hospital last Thursday - only 48 hours after his surgery...isn't that amazing! I was sitting in the room with him in the morning and Dr Rekate (his neurosurgeon) came in and said - "you look too good to be in here any longer, lets send you home today!". You should have seen the look of sheer happiness on Dads face. By 2pm we were home, and he was resting comfortably in his favorite Lazy Boy watching Andy Griffith episodes.

Dad has been doing nothing but resting and relaxing ever since his return home. He is VERY tired and his legs are the weakest they have ever been. Every day either Patti or I rub lotion on his arms/legs (his skin gets SO dry from the medications) and I can feel that the muscles are extremely deteoriated. Thatis why he has such a hard time getting out of chairs and walking around.

Thursday morning, before we left the hospital, we met with Selma - the clinical research nurse in charge of the study Dad will be participating in. Dad had to sign the consent form and she wanted to make sure we understood everything that is going to happen. We had read and discussed the details of the study (experimental treatment) with Dad the night before, so she knew we would have some questions. We wanted to know exactly what it was that they would be injecting into Dads brain through the 2 cathedars - it is called "Cotara" and is a radiolabeled monoclonal antibody that targets the necrotic core of tumors and uses beta radiation to kill the tumors from the inside out. They have a "tentative" sugery date of October 8th- to surgically insert the cathedars and begin the treatment. The treatment will begin on the 2nd day and will be given for a 48 hour time period. During that time, Dad will not be able to get out of bed. YUCK! He will be in a special room on the 6th floor of St Joe Hospital that has lead sheilds and a special nurse that is brought in to care for him (I imagine she will be wearing some sort of lead suit to protect herself from the radiation). After the 48 hours, Dad will have to REMAIN in the room until the radiation levels in his body decrease to the Arizona State Law standard for acceptable levels of radiation. They will check the radiation level in his body with a Geiger meter. They expect he will be released a few days later. So the total hospital stay will be 5-6 days. 2 days prior to treatment Dad will get a medicine to protect his thyroid - I guess the thyroid would absorb all the radiation if they did not do this. He will also be given Zofran before the treatment to try to prevent nausea. The hardest and worst part about this for Dad is the fact he has to literally lay/sit there in that bed for a full 48 hours without moving too much. And that WE won't be able to be there to pass the time with him!! I hate even thinking about it. But if this works, then its worth it.

Got a call from Selma on Saturday and Dad will start all the preliminary testing/appointments required this week. We take him in Tuesday at 12:30 for a chest x-ray, and ECG, blood work, and a meeting with Dr Shapiro (NeuroOncologist). Dad also told me he wanted to try to go see the room he will be STUCK in for 5 days - so we will see if we can do that too. Then on Friday he will have another MRI and possibly a appt with Dr Brachman (radiation doc). Dr Brachman is in charge of the radistion portion of this treatment, so we will be meeting with him often I imagine.

Found out from Dr Shapiro that Dad will be the 4th patient here in Arizona to have this treatment and about the 49th person in the USA. They are giving this treatment at 6 centers here in the USA. Needless to say, we do not know much past history from other patients - and how they are doing. The exact name of the treatment is "Phase II, Open Label, Non Randomized, Multicenter Study of Interstitial 131 I-chTNT-1/B for treatment of Newly Diagnosed or Recurrent Malignant Glioma. For those who want further info see the link below to the pharmaceutical company who developed this treatment. If you open the link, go to the clinical trials area and find info there.

Dad is now officially a PIONEER in my book... and while our family is very scared of this treatment (it sounds SO toxic), we stand behind him 100%, and pray this is what will finally stop the tumor from growing.

We had a nice visit this weekend from my Aunt Pat and my cousin Rick. They drove 11 hours to see Dad for the weekend - God Bless them! We had a relaxing weekend together - thank you so much Aunt Pat and Rick for coming to see us - it meant so much to Dad I know.

I am hanging out here with Dad this afternoon and he says to say a big HELLO to everyone out there, and that don't worry he will beat this thing once and for all!!!!

Love, Sheri

Thursday, September 20, 2001 at 01:36 AM (CDT)

Dad is out of ICU - yeah, yahoo, yeehaw! That place was crazy... like right of a scene from the TV show ER.

Dad has a nice private room on the 5th floor - he was moved into this room about 4pm today. He looks really good and is feeling better and better.

Dr Shapiro came to visit in ICU this am around 10:45am - he said Dad looked great - much better than he thought he was going to look! He asked Dad all the typical questions: What day is it? What is your name, where are you, why are you here, what is this on my wrist (watch), etc. Dad could answer some of the questions, but we could tell he was pretty confused on a few. He couldn't remember what month it was - and when we told him, he kept insisting it was March or May. He also was having a hard time with names and identifing objects. Dr Shapiro didn't really comment, just said he would be back tomorrow to check on Dad. Dr Rekate stopped by quickly as well later in the morning, and also commented on how well Dad looked. Rekate said he looked at this mornings MRI and the tumor was reduced in size enough for Dad to have the experimental treatment. That was the goal of this surgery - mission accomplished!

Throughout the day, the nurses kept quizzing Dad on those same questions - he still couldn't get the month right, and names were hit and miss. He always got Patti's right, but after that he usually had trouble. Sometimes my name is Rick, sometimes its Becky, and sometimes its Sher - but we know he knows its me!! We will see if his word finding/comprehension gets better as he recovers from the surgery, or possibly there may be additional brain damage - but no conclusions until he has had a few days to heal!

We were also paid a visit from the clinical research nurse, Selma, who works with Dr Shapiro and is in charge of this new experimental study Dad will be participating in. She gave us a packet to read and sign, and will be back to meet with us at 5pm tomorrow to review it and answer our questions. We did learn the basics of this new experimental treatment though - it is not chemo, and is not radiation. It is basically liquid radiation that will be administered via 2 catheders that will be surgically inserted (by Dr Rekate) into Dads brain. The liquid radiation will carry an monoclonal antibody that attaches itself to the tumor cells and kills them. It only will attach to tumor cells, leaving his normal brain cells in tact. This treatment will require Dad be in the hospital again for about 5 days. One day to do the surgery - and then 48 hours of actual treatment. From reading the literature, it looks like the additional days will be required to allow the radiation level in his body decrease to normal volume. These days Dad may have to be in some sort of isolation. It looks like the treatment will be able to begin much earlier than the 5 week time frame we were told before- Dad will get the treatment in 5-10 days from today - if all goes as planned. Lots of paperwork and testing to be done first.

Tomorrow we will learn more about the risks, etc associated with this new CUTTING EDGE treatment. Since this is pretty much Dads last resort in terms of treatment options- we are fairly confident he will be starting it asap. Dad has proven to be a tough cookie throughout all of this - and after reading the literature packet we got this evening - I feel strongly this could be exactly what Dad needs to keep this tumor under control, and allow him a longer life.

I am so proud of my Dad tonight - he has come through this 2nd surgery with flying colors - and I know this must all be taking a toll on him; but to this day he is more worried about Patti, Megan, and I than himself. He never complains and is always asking questions about how we are doing, etc - he is the most selfless human I have ever met.

Love, Sheri

Wednesday, September 19, 2001 at 09:05 AM (CDT)

Dads surgery went well yesterday and he is now in the ICU - and talking just like before!!! So far it looks like no additional damage was done - he is talking and can move all his arms/legs with no problems.

The surgery began at about 9:45am and was over around 2pm. Dr Rekate came out right away and told us he was able to remove as much of tumor as he could while leaving as much of the speech area in tact as he could. He said Dad was doing well so far, and that we wouldn't know if there was any additional damage to his speech until he woke up.

He was in recovery for a couple of hours - the resident neurosurgeon did come out and tell us Dad was waking up, and that he was speaking OK! We were all so excited.

It took a couple of extra hours to get Dad into ICU - the hospital was very busy and the beds in ICU were full. By 5:45 or so we were finally able to meet him in the hallway as they wheeled him into ICU. He was so happy to see us - and VICE VERSA! He said all of our names perfectly. He looked about the same as after the last surgery - same horseshoe incision on the left side of his head, and very swollen all over. Instead of using staples to close the incision like before, they used a nylon type of suture - so the actual wound looks a little better. There is a greater risk of infection this time, as Dads immune system is not strong, and the steroids make healing a much longer process. We were told by the resident neurosurgeon that 5-10 days after the surgery is the most critical time - keep it clean and keep Dad healthy!

I don't like the room Dad is in right now for ICU - he is in a different ICU than last time, this one is on the 2nd floor - much busier and no doors at all. There are three patients in each "pod" area - not very quiet and quite chaotic I must say. The night nurse did say that if Dad does well overnight (last night) they will move him into a normal non-ICU room today.

Visiting hours begin at 8:30am, so I need to get moving and get over there!

Dad has a MRI sometime this am - they will map out how successful they were yesterday. Other than that, he will be just relaxing in bed and eating ice chips all day. Patti will come for the day too, and Megan will come after school.

Dad says to say a HUGE hello to everyone when I update this, and thanks for all the prayers - they are working!

Love, Sheri

Monday, September 17, 2001 at 01:25 PM (CDT)

We got a call last Thursday from Dads neurosurgeon, Dr Rekate. He wanted to see us in his office that day at 4pm to help our family make the decision whether to have another surgery or not.

The meeting began with Dr Rekate saying he cared very much about us, and that he wanted to be totally candid. He said another surgery may only prolong Dads life another 1-2 months and that there was risk of Dad losing more of his speech capabilities. He said Dads word finding/ reading ability is the way it is today because the tumor/radiation/chemo has destroyed those brain cells - and they will not grow back. In addition, another surgery could cause additional loss of language function. He said even if he removed half of Dads brain (which is impossible of course) that the tumor would still grow back. And since none of the treatments he has done so far; radiation, BCNU chemo, and Temodar have not worked - it would grow back and keep on destroying the good brain cells.

He said some people would say to that - enough is enough - and enjoy the abilities they have while they can. He asked Dad what he thought about that - Dad said, " I want to have another surgery... I will still be able to see, to listen, to be with my family, and if it prolongs my life...then I want to do it."

I asked Dr Rekate if he knew about the experimental protocol Dr Shapiro told us about on Tuesday - the Monoclonal Antibody treatment - and he was NOT aware they were doing that here at Barrow. He seemed to change his tone a bit about the surgery at that point too - and said, I would like to discuss this with Dr Shapiro and then we will be in touch with you. He seemed more positive about operating on Dad again. Maybe this new treatment will STOP the tumor from growing back again after surgery - I think thats what he was thinking. Thats what we were all thinking!

Friday morning Patti got the phone call - Dr Rekate. Dad will be having surgery Tuesday (TOMORROW) at 9:30am. WOW.

Today, Dad and Patti are at the hospital doing some pre-surgery preparations. We need to have Dad at the hospital tomorrow at 5am. His surgery will begin at 9:30am - not sure how long it will last. 5 weeks after surgery he will begin the experimental treatment - I will find out more details and add all that info later.

Megan will take the day off school tomorrow and go to the hospital with Dad, Patti, and I. The three of us will be together waiting while Dad has his surgery - nice to all be together - right there for Dad.

We spent the night Saturday night at L'Auberge in Sedona, Arizona. It was a wonderful, relaxing time for all of us. We had a cute little 2 bedroom cabin right along side a bubbling creek. We played Dads favorite board game- Sorry! and sat outside on our patio enjoying the nice weather and sounds of the creek. Megan fished in the creek, but only caught a few tree branches :) We also went on a short hike to one of Sedona's Vortex's - Dad made it all the way! It was very hard for him, but as we all know Dad is a trooper and wouldn't stop until we got there!!! The Vortex's are places that people say have very high spiritual energy...so we went there and hung out for a few hours.

I will be sure to post again Tuesday night or Wednesday morning to update on how Dad did with the surgery. THANKS FOR ALL YOUR PRAYERS!!!!

I added new pictures Friday...check them out.

Saying prayers for my Grandpa Hoogenboom too - my Moms Dad - he had a heart attack last Monday evening and is in Bronson Hospital in Kalamazoo Michigan - my Mom is there with him now - it took her awhile to get there due to the flights all being cancelled. Uncle John (his son) has been doing a wonderful job in caring for Gramps. Gramps is not doing too well, so saying lots of prayers for him too every day.

Love and prayers, Sheri

Tuesday, September 11, 2001 at 10:42 PM (CDT)

Typing this message tonight with much saddness for all the terrible events that happened today in here in the USA. Our family is in shock, as I am sure all of you are too.

Today was our appointment with Dr Shapiro - at 9:00am. Patti, Dad, and I left early (6:30am!) and got Patti's port flushed over at Good Samaritan Hospital (the port, located in her chest, is what they used to inject her chemo when she had to have it - and they leave the port "in" just in case she ever needs chemo again...we pray never...but she needs to have it flushed out once a month to avoid infection).

We ate breakfast at Dads favorite joint - Dee's, which is right across the street from Dr Shapiro's office/ St Joe. The restaurant was busy, but amazingly quiet, as we all watched in disbelief on CNN the terrible turn of events this morning.

We walked across the street to the doctor's office and waited for our appointment to begin. Dr Shapiro called us in to his office and we started out with how Dad has been doing lately. We told him that he has been getting worse- had to bump up his steriod dose on 9/6 to 12mg per day. Dad was getting very dizzy and seemed "out of it". In fact on 9/7, the day of his MRI, he was very dizzy and lightheaded and it was difficult for him to get from the car to inside to the MRI. He also had a bad headache that morning. He took a total of 14mg of steriod on 9/7. The increased dosages did make him feel better, so we decided he would continue at 10mg per day until our meeting today with Dr Shapiro.

We had lots of questions prepared for Dr Shapiro...why are Dads arms SO bruised and scratched up? (They look like he has been in a terrible fight) He explained the steriods THIN the skin really bad and any little bump/scratch will show up and stay for quite awhile. Dad has been doing some trimming of bushes in the backyard - and the bushes have covered his arms in bruises/scratchs - he says they don't hurt.

We asked if Dad should continue his other medications - Lipitor (cholestrol lowering) and Accupril (blood pressure)- and he said that is up to our family doctor who perscribed the drugs - but "for the record he also takes 10mg per day of Lipitor". (I had heard that in the last 90 days there have been 30 reported deaths caused by "statens"; Lipitor is a staten. I need to find out more about this)

We told him that Dad has been having blurry vision, he can't read at all, and that his hands have been cramping up uncontrollably every so often. Also, yesterday Dad mentioned a "weird sensation" he felt in the side of his head where the tumor is - kind of like electricity. Dr Shapiro said "lets go in and look at the scans (MRI) and see whats going on."

He brought the 2 scans up on the computer monitors - the one from Friday 9/7 and the one from early July. I could tell right away from looking the tumor had grown again. (major heavy sigh) Dr Shapiro compared the 2 scans and said "we are not slowing this tumor down - the radiation, the BCNU chemo, the Temodar...none of it has appeared to affect this tumor". He was concerned about the location of the tumor - its deep in the middle of the temporal lobe - and they can only remove safely the first 5cm of that area of the brain. He said the swelling was also worse due to the larger tumor fighting for space with the normal brain cells.

He said we could think about another operation - because given the size of the tumor, Dad can't do anymore experimental protocols. In order to participate in those types of treatments, the tumor must be less than 60 cubic centimeters. He "roughly estimated" Dads tumor to be 73 cubic centimeters. An operation would de-bulk (decrease) the size of the tumor and allow for additional treatment. The exact treatment he is referring to is only being done here at Barrow and at Duke - it is a Monoclonal Antibody (???) infused through 2 cathedars in the brain and would require a 2-3 day hospital stay.

Before we make a decision on another operation, Dr Shapiro said we will do 2 things. One is increase Dads steroid dose to 20mg per day for the next three days and have us observe Dad - see if his speech/reading improves. If it dosen't, the cells in that area are already damaged, and the operation would be LESS risky. If his speech/reading does improve - the symptoms are mostly from swelling and makes the operation MORE risky. When he says "risky" he means in terms of Dads quality of life after surgery - speaking, reading, comprehension in conversations, etc.

Dad expressed he was ready for another surgery and that he wanted to do whatever it takes to beat this thing. We asked what would happen if we didn't/can't do surgery - he said Dad would just continue with the steriods and thats all. He estimated Dad would live for another 4-5 months if he just continued with the steroids. ( I am screaming every bad word in the book right now, as I am sure so is Patti, and Dad) But Dad IS NOT GIVING UP - and thats what counts... none of us are giving up for that matter... I keep thinking of those stories you hear about where peoples tumors magically disappear - and thats exactly what we are praying for right now.

The second thing Dr Shapiro wanted to do was take Dads case to Monday's Tumor Board meeting for the consensus opinion.

SO, our plan of action is to call Shapiro this Thursday with the report on how Dad is doing with words/reading/etc. Then the Tumor Board will meet Monday. Dr Shapiro will call us sometime after the meeting, and we will decide by Tuesday if Dad will do surgery or not. If he does do surgery, it will be next week.

We decided to hold off on calling Dr Bishop in Tucson right now - we were considering switching to her, but if Dad needs surgery we want to stay here in Phoenix. Dr Shapiro was actually a bit "better" today anyway. We will also cancel our appt with Dr Brachman this Friday - he will be at Tumor Board Monday - and we figured we should wait until after that. Also, tomorrow I will put in a call to Dr Rekate, the one who did Dads first surgery, and give his office the heads up their favorite patient may be coming back for round 2.

Dad, Patti, Megan, and I had a family discussion this evening about all that is going on with Dad - we needed to do this really bad, and I think we all feel better now. Megan is only 13, but she is old enough to understand her Dads condition is very serious...and from now on we will include her in on the details. It was hard to talk about everything, but now that the ice is broken, I hope we can continue to share our thoughts, fears, frustrations, emotions, etc. Our talk ended with a GIANT Hauke BEAR hug - THAT was awesome.

Tonight we pray for all the people affected by todays tragic events... I still can't believe everything that happened.

Love, Sheri

Saturday, September 01, 2001 at 10:51 AM (CDT)

Wow! I can't believe its almost been a MONTH since my last entry!

Back to where I left off...Dad had his Dr appt with Shapiro on August 7th and it went well. His blood counts were really good which meant he was OK to start the next round of Temodar. The counts were so good in fact, that Dr Shapiro increased his Temodar dose up to 440mg per day. ( I wonder if drinking the Liquid Chlorophyl has helped with keeping his counts up? The 8 year gbm survivor, Rebecca Libutti, attributed always having good blood counts to drinking the green stuff!)

Dad started his second round of Temodar on August 8th. No major problems with the Temodar this time at all! EXCEPT for the fact that Dr Shapiro's office forgot to call in the perscription for ZOFRAN - the anti-nausea wonder drug that is taken 1/2 hour prior to the Temodar - if Dad did not have this, he would most likely projectile vomit from the Temodar - NO THANKS, right!! Patti tried to get in touch with Shapiro's office a few times to get the Zofran called in to the pharmacy...with no success - are we surprised? Luckily, Patti and Dad have a great relationship with their pharmacist at Target (they should earn frequent flyer miles from Target Pharmacy!) and he came through with a Zofran pill for Dad to take the first night. The same fiasco was repeated the next day - so the pharmacist gave them another Zofran (without Shapiro's office calling it in STILL!) I believe by the 4th day of Dads treatment the Zofran perscription was actually called in...thank goodness for the nice guy at Target pharmacy, or else Dads treatment would have been delayed!!

On August 10th, while working in the yard in the early morning hours, Dad fell into a big bush and scraped up his arms/legs pretty bad. Patti also noticed he had been tripping over nothing a few times while they were walking a couple of days later. Dad has commented on some dizziness, and weak legs - most likely from the Decadron (Steroids). We were also wondering if it had anything to do with his vision.

Took Dad to the eye doctor on August 13th and he got a nice new pair of glasses - he was commenting on how hard it was to read, and that it was hard to keep switching from looking through the normal part of his glasses to the bi-focal part. He had a eye exam, and they found his vision to be basically the same - so no new perscription needed. He did get a larger set of glasses that are lighter on his head and allow him to see through the lens much easier. The glasses are not helping him read better, but he does say they make a big difference in seeing everything. He has not fallen since he got the new glasses either!

On August 17th, Dad and I drove down to Tucson, to the Arizona Cancer Center. We had an appt with Dr Maria Bishop (a Neuro-Oncologist like Dr Shapiro) for a second opinion. I had taken ALL of Dads medical records - doctor notes from all 3 docs, and all the MRI's - down to the Cancer Center last month. Dr Bishop was VERY prepared for our meeting - we were brought into an exam room where she joined us a few minutes later. She sat down right next to us and told us that she had looked over all the files, and would we mind if she gave us a recap of Dads history since this all started. I was amazed as she went through the entire chain of events - beginning with the first MRI in November, all the way to the end of July. Dad and I filled in a few details here and there, but she basically knew Dads entire situation. What a refreshing change from Dr Shapiro! She also asked lots of questions about our family and how we were all doing. Not medically, but mentally! She did an exam on Dad - the typical motor skills test and verbal testing - and commented on how STRONG Dad seemed to be in his arms and legs. She did point out that he probably could not get out of the chair he was sitting in without using his arms to push his body up - she was right (steroids deteoriating the major muscles in his thighs and shoulders). With the verbal test - Dad couldn't find the right words a few times - she called this EPHASIA. Dads EPHASIA has been getting worse and worse as the weeks go by. We asked why, and she said it could be many things, but most likely the tumor.

Our meeting continued for almost an hour and a half. She was the NICEST Doctor and we both felt so comfortable talking with her. She had lots to say, and pointed out alot of things we have all thought about, but have not TALKED about. Dad is ALIVE, he is a SURVIVOR - he has passed the normal 6-month time frame they give people with these type of evil aggressive tumors -AND he is doing really well. She did explain that the 6-month time frame they give is for the entire population - which encompasses people from age 25-100 and from all areas of the world. On the other hand, she wanted to make sure we all know the seriousness of his condition, and that we need to reserve a small area of our mind for preparation in case Dad is not here. This made me SO sad, but is something I know is on all of our minds. Dad and I had a good conversation about all of this during our 1 1/2 hour drive back to Phoenix. I don't think either of us enjoyed the conversation one bit, but it was good to get things out in the open. Getting things out in the open is still something our family is working on - Dad, Patti, Megan, and I all need to sit down and talk, cry, etc. about how we all feel. This is easier said than done, as we all want to remain 110% positive Dads tumor somehow will disappear one of these days! And thats what we pray for every day.

Dr Bishop also told us she agreed with the treatment program that Shapiro has Dad on - she would have Dad on the same program if he were in Tucson. She did not know Shapiro personally, but said he was a well respected Neuro Oncologist. Our meeting ended with a BIG hug for both of us from Dr Bishop and we were on our way back to Phoenix. Dr Bishop had a meeting scheduled that afternoon to read Dads MRI's with the specialist who reads them, and was going to call us with her thoughts after the meeting. Dad took her phone call the following week, and couldn't remember everything she said, so we have been trying to get back in touch with her. I will be talking with her this week and will add her comments in the next post.

Dads condition has been pretty stable this past month - still has the major fatigue - some days are worse than others. He tried to decrease the steroid dose down to only 2mg in the morning and 2mg at dinner; Dr Bishop had told us some patients can do this in between Temodar rounds and have good results. Dads memory got REALLY bad though - so after a week, he went back to the 6mg per day routine. He still has problems sleeping through the night - he has to use the bathroom a few times during the night, and then when he gets back to bed he gets excited because he feels so good and can't WAIT to get up. He has been getting up around 5:30am and swimming laps in the pool for 10-15 minutes every morning - which is great. By the time he has done that, and a few odds and ends things around the yard, he is pooped! He finds his legs feel better if he keeps them moving though, so he is trying to get up and around more often.

Dad, Patti, Megan, and Megs best friend Sophie left early yesterday morning for their annual Labor Day weekend trip to San Diego. Dad was feeling good enough to go - and thought the cooler weather would do him good. They always stay at a great little hotel right on the beach...I am sure they are out there right now, people watching and enjoying the cool weather! My Dads sister (Aunt Pat) and her son Rick will also be in San Diego this weekend - so they will get together on Sunday or Monday for a breakfast or something - what a coincidence!

Dads next MRI is this Friday - September 7th at 9:15am. We are praying for GOOD results!! We will not know anything until September 11th when we meet with Shapiro to discuss the results. We will also meet with Dr Brachman on the 14th to get his opinion of the MRI results. Not sure when Dad will start round 3 of Temodar.. will call the Dr office this Tuesday am and find out.

Keep the prayers coming for some good news after the Sept 7th MRI!!!!!

Thanks for all everyones kind words in the guestbook - it makes me feel so good to read the entries, and I know it means so much to Dad too.

Love, Sheri

Sunday, August 05, 2001 at 11:40 PM (CDT)

Hello - I wanted to start this entry with a prayer I got from a gentleman who's wife had a gbm 4 brain tumor. Her name was Marg Strangman and she lived with her family in Austraila until she passed away on June 19th. She lived a wonderful life - and was a courageous fighter. I visited their family's web site often, what an amazing family the Strangman's are! Strangman Family, Thank you for the sharing this prayer with me... for my Dad.

A Prayer for Today

Every day I need you Lord, but this day especially. I need some extra strength to face whatever is to be...this day more than any day I need to feel You near - to fortify my courage and to overcome my fear.
By myself I cannot meet the challenge of the hour. There are times when human creatures need a higher Power - to help them bear what must be borne. And so, dear Lord, I pray - hold on to my trembling hand and be with me today.

AMEN

Dad - Marg took a copy of that prayer with her to all her doctor appointments, MRI's, blood count tests, etc. I think it would be good if we did the same!

Update on Dad - doing pretty good these days! Major problems are fatigue, reading and word finding problems, and sore joints. He is now down to 6mg of steroid per day. He did the 10mg per day dose after the bad incident a few weeks ago, and then tapered off to 8mg per day the second week, and then down to 6mg per day the third week. Dr Brachman said to stay at the 6mg per day dose - not to go below it. He also told Dad to reduce his salt intake -possible reason Dad feels so swollen. He also recommended eating more raisens, peanuts, bananas - to help keep his potassium levels up - the steroid lowers the potassium levels - not good. The next Dr appt is with Dr Shapiro tomorrow (Monday) morning- so we will see what he says.

Dad, Patti, and Megan visited Michigan July 25th - August 3rd!! I was able to join them for the first weekend. There was never a dull moment as lots of friends and relatives all were anxious to see Dad. Just like we were anxoius to see them!! Dad Patti and Megs stayed at Patti's Dads house in Vicksburg the first two nights and then Dad and I stayed at Aunt Linda's in Bangor Sat night and Uncle Bill's in Kalamazoo on Sunday night. A stomach flu bug was circulating around so Dad was feeling rotten on Saturday and Sunday - but by Monday he was feeling better and was enjoying sitting out on Uncle Bill's awesome back patio - while his friends stopped by to visit. Saturday we spent the afternoon at Uncle Jim's - hanging out in the barn and enjoying his enormous garden filled with fresh veggies and beautiful flowers. Sunday, Aunt Linda, Dad, and I drove around Bangor, where they grew up. Dad has 2 brothers and 2 sisters. We visited the house they grew up in. It brought back lots of great memories for Dad! It was neat for me to see where Dad grew up too. Sunday afternoon, Dads nephew-my cousin Ron, came to Aunt Linda's with his wife Shelly and their 4 children - 3 of which are triplets! We had a fun afternoon with Aunt Linda, Uncle Dave, Uncle Jim, Aunt Esther, Ron, Shelly, and their kids. Sunday night we drove to Uncle Bill and Aunt Peggy's. A few minutes after arriving at Uncle Bill's, Dads best friend Cornie showed up to hang out on the patio and shoot the breeze. It was a great night. My Grandpa and Uncle John also stopped by Monday morning to see Dad and wish him well. I left Monday, and Dad stayed here at Uncle Bill's for the rest of the week with Patti and Megan. They did return to Vicksburg to stay Wed evening with Patti's Dad.

They returned to Phoenix last Friday night - what a GREAT trip they had - and were so HAPPY they got to spend lots of time with family and friends!

Dad has a busy week this week...three appointments tomorrow. He is getting blood drawn in the am - to see how his counts are for the 2nd round of Temodar. He is going to see Dr Headly because his ears and head still feel very plugged. And he has a dentist appt.! Then on Tuesday, he has Dr Shapiro at 10am - to determine if he can start the 2nd round of Temodar. If so, he will begin at the end of the week. Keep our fingers crossed! Dads next MRI won't be until early September, so keep praying that that tumor is shrinking!!!!

Have a great week - I will post pictures from the Michigan visit soon - keep an eye out! Thanks for thr continued support, love, and prayers!!!

Love, Sheri

Tuesday, July 17, 2001 at 11:36 PM (CDT)

Dad started his 5 days of Temodor (chemo) last Wednesday July 11th. Each night he took his Zofran anti-nausea pill at 8:30pm and then the 5 Temodor pills at 9:00pm - and then went right to bed. The first few nights went really well - no nausea at all.

Dad felt his best on Friday morning -he had enough energy to do some work in the garage, around the pool, etc. He was so happy to feel this way! Friday evening he was very tired from the mornings activities - and after a yummy pizza dinner he was off for another good nights rest.

Patti flew home to Michigan early Friday morning to celebrate her brother Jim's wedding and to see her grandchildren - her daughter Theresa lives in Michigan, and they were able to go to the wedding celebration together. It was great for Patti to go see her family and spend a few days at home with them!

I stayed over at Dads this past weekend to help Megan and Dad hold down the fort :) We had a very relaxing weekend - watching the Diamondbacks play baseball on TV, eating pizza and take out Chinese, and getting good night sleeps! I did cook ONE meal on Sunday - just so you all know we didn't eat junk all weekend :) Also, Dad is not allowed any beer while he is taking this chemo - so no beers for Dad this weekend - but he actually did not feel like having any anyway.

Saturday and Sunday Dad felt extremely tired - which is one of the main symptoms of the Temodor. He listened to his body and gots lots of rest. We did go to the Village health club on Sunday afternoon, and Dad had his first one hour massage! He liked it and said it felt really good on his back and neck - especially since he had been sitting in the same place so much. I am going to try and find a person who can come to the house and do this for Dad - that would be a big help to his sore joints I think.

Sunday night Dad took his last dose of Temodor and went to sleep. He woke up in the middle of the night feeling very nauseous and dizzy. At 4am I gave him another Zofran pill and he went back to sleep. I checked on him again around 7am and he was still sleeping - unusual for Dad since he is usually up and around by then. Also we had a ear Dr. appt. with Dr Headly at 9am, and had planned to leave the house around 7:30am. At 7am, I woke him up and asked how he was feeling - he was very groggy, disoriented and was rubbing his head and squinting his eyes. I asked if he still felt sick to his stomach - he said he did and that his head hurt really bad. I gave him another Zofran and he went to sleep again. I cancelled his Dr appt. and let him sleep - figuring it was his body reacting from all the chemo. Around 11am I needed to leave to get Patti from the airport, so I woke him up. He was still very lethargic, and complained his head felt very swollen and it hurt. I had him drink some water - it was so hard for him to even sit up to take a drink. He fell back to sleep and I went to the airport to get Patti. Patti came home and we let him sleep the entire afternoon. Patti called Dr Shapiro's office - and had to leave a message with all the details. I called Dr Walker - and was able to speak with her around 5pm. I asked if Dads symptoms were normal with this type of chemo. She said the symptoms were NOT from the Temodor (chemo) - but from swelling in his brain or from the tumor. She said to give him 10mg of steroid (Decadron) right away. Patti did that, and a couple hours later he was feeling a bit better. He stayed in bed and slept the rest of the night - getting up quite a few times to use the bathroom. Each time he got up he was very dizzy and disoriented - he did fall down one time, but he was ok.

This morning he was feeling better and made it downstairs to his chair. He did not eat all day yesterday - except for a little peanut butter toast in the evening, and didn't feel like eating today either. He did eat a bit at dinner - so he had something in his tummy when he took the steroids. He took another 10mg today. Dr Walker told us to keep him on the 10mg for about 10 days and see how he is doing. Valerie from Dr Shapiro's office finally called back this morning - and said to take Dad to the ER if he wasn't getting better after the increased steroid dose - taking Dad to the ER is the LAST thing we want to do to him - I was not happy with that response! I asked if we could just bring him in to see Dr Shapiro and was told "no, you have to go the the ER". Luckily we had a follow up visit scheduled with Dr Brachman (the Radiation doctor) tomorrow morning at 9am - so we will see what he thinks and take it from there. Dr Walker also offered to see Dad if this continues - she said the ER would be a nightmare. It looks like the bad episode that happened Monday can be controlled by increasing the steroid dose. We are all learning as we go along with this - I never gave Dad his 2mg dose on Monday am, since he was sleeping, and as it turns out it may have helped him feel better. Both Patti and I thought the way he felt yesterday was from the 5 days of chemo - we were wrong, but now we know.

I visited Dad this afternoon and also talked with Patti on the phone about how he is doing. He is feeling 100% better than yesterday, and at least is up and around a bit. When I was over today, we walked around the pool one time - to get his legs moving a bit. He still feels pretty dizzy and lightheaded right now. He also is having lots of word finding/memory problems - probably more than he realizes right now too. Almost every sentence has a wrong word in it - or does not make sense at all. We are hoping this will quickly pass with the increased steroid dose in the next few days.

It will be interesting to see what Dr Brachman says tomorrow morning about yesterday and what to do from now on. Dad is a little worried about seeing Dr Brachman tomorrow - as all the other times he has seen him he has been feeling and doing pretty well - and this time that is not the case. He made a list tonight of questions for Dr. Brachman - that I hope Dr B can answer for Dad.

For another opinion, I am taking all Dads records down to the Univ of Arizona in Tucson tomorrow afternoon to have another group of Doctors take a look at Dads case. I found out they have a large Brain Tumor facility down there as well. I have the MRI's from before and after his surgery and the last MRI from 7/9. Also have all Dr Shapiro and Rekate's dictated notes. Not expecting to change anything, just want to have another set of expert eyes take a look and give us another opinion.

We HOPE and PRAY Dad comes out of the woods on this one soon - it looks like he will. I just want him to feel good enough so he can make it back to Michigan to see family and friends in a few weeks! I am very confident he will be able to do that.

Thanks for your constant prayers... Love, Sheri

Monday, July 09, 2001 at 07:57 PM (CDT)

On June 28th Dad increased his steroid dose to 8mg per day due to increased dizziness/lightheadedness and more memory loss problems than usual. His worst day was June 24th- the day they returned from Prescott. That entire week he was very tired, lightheaded, had lots of trouble reading, etc. On 6/28 We called Greta, Dr Shapiro's nurse, to see what we should increase the dosage to. We increased to 8mg per Dr Shapiro's orders. By July 4th, his symptoms were about the same, so Dad decided on his own he would drop back down to 4mg... and see what happened. He really hates taking the steroids, as they make him so hungry and make his joints very weak. After he dropped the dose, he did feel a little better - less dizzy and lightheaded. He still feels extremly weak, especially when it comes to getting up from a chair or from the bed. His ears also felt really plugged so we made a Dr appt with Dr Headly for July 16th. We also have another follow up visit with Dr Brachman (the radiation doctor) on July 18th - where he will give us his feedback from today's MRI. Dad has started exercising again these last 2 days - walked one mile on the treadmill both yesterday and today. Hopefully this will help his joints from being weak and stiff.

Today was the much awaited/dreaded MRI. Dr Shapiro perscribed a Valium for Dad, since the MRI was to be 45 minutes long. Dad took 1 Valium at 11am and another right before the MRI at noon. The MRI was over by 12:45 and we walked across the street to eat lunch and wait for our 2:15 appt with Dr Shapiro. Dad was feeling very relaxed, but otherwise seemed fine. (If I had 2 Valium, I think I would be flat on the floor for the rest of the day! Another indication on how tough Dads body is with all these drugs)

Our meeting with Dr Shapiro was very informative. He first asked what medication Dad is currently taking - and the Accupril concerned him a bit (Blood pressure meds). He took Dads blood pressure laying down - 125/80, then standing up 132/72. He wants Dad to have his blood pressure taken for the next 2 days in this same way - to see if Dad should stop taking the blood pressure meds. Shapiro decided he couldn't get an accurate reading today due to the Valium Dad took. Thats why he wants readings tomorrow and Wednesday. He explained that having a brain tumor actually helps lower blood pressure - so the additional Accupril meds may not be necessary.

Next he did the verbal and physical test on Dad. This time Dad answered all the questions correctly except for when Dr asked who the President is... Dad paused and said "Christ" ...meaning he KNEW the answer, but couldn't get it to come to mind - Dr Shapiro immediately fired back, "No, he is not the President!!" :) we all got a good laugh out of that one.

After the testing, we walked into the MRI reading room to look at the MRI scans. We looked at today's in comparison to the ones from 5/29. Todays readings showed more enhancement in the same area as the tumor was before. The tumor has filled in the area where the tumor was removed during surgery. The total surface area of the tumor looks the same though - which is good news - it had not spread out into other areas. Just the middle areas of the tumor are filling in.

Based on these results, Dr Shapiro concluded the BCNU chemo is not working. He decided to change Dads Chemo to Temodar - a chemo that was approved by the FDA a couple of years ago. Based on Dads height and weight today - 72 inches tall and 214 lbs - he will get 330mg of Temodar per day for 5 days. The Temodar is given in a pill form so he can take it from home. The main bad symptom of Temodar is nausea, so he will also take 1 Zofran (anti-nausea wonder drug) 1/2 hour before each Temodar dose. And will continue the Zofran for 2-3 days after the 5 day dose of Temodar. He will take all the meds just before bedtime. Dad will be starting his first round of Temodar in the next few days and will continue to take it every month. So it will be 5 days of Temodar, 25 days off, and so on. He has a follow up visit with Shapiro in one month on August 7th at 10am and his next MRI will be in 2 months.

We also discussed the decreased steroid dose..that Dad decided on his own... and Dr Shapiro agreed. He even wants Dad to drop down to from 4mg to 2mg per day starting tomorrow. If in the next 3-4 days, he feels better - less lightheaded and tired, then stay with that dose, and if not we will call Kaye - the Chemo nurse, and see what to do.

We are glad today is OVER and that the tumor has not spread into other areas. Dr Shapiro is concerned about the growth/enhancement in the same area - but hopefully the new type of chemo will make a difference! PRAY PRAY PRAY!!!

We all had a great 4th of July - spent it at the Hyatt Gainey Ranch here in Scottsdale. We were literally in the pool hanging out for almost 10 hours! The resort has lots of pools and shady areas, so we just hung out, relaxed, and stayed COOL in the POOL :) At night, they showed a "dive in movie" which is where you float in the pool on inner-tubes, and watch a movie (Independence Day, with Will Smith) on a huge big screen TV - like a drive in but in the POOL. Too funny.

I will update with the how Dad is doing with the new Chemo after the first round is over. Nice to know he does not have to go in to the hospital for chemo anymore. ALSO, possibly he will be able to take a trip to Michigan around August 11th to see family and friends!!! We will be looking into that soon and will let everyone know asap.

Dad says to say HI to everyone!

He was so happy he was able to make it to Lynelle's going away lunch last week - Lynelle is a lady Dad worked with at IKON, who also has cancer, and is moving to Austrailia with her 12 year old son. Good Luck Lynelle!! Our family will keep Lynelle and her son in our prayers.

Hope everyone is doing well and enjoying a great summer... I'll be back with another update soon! Love, Sheri xoxo

Saturday, June 23, 2001 at 05:54 PM (CDT)

Happy Saturday!

Dad, Patti, Megan, and Megan's best friend Sophie are in Prescott this weekend - escaping the heat and relaxing for a couple of days!

We had a meeting yesterday morning with Dr Brachman - Dads radiation doctor. It was a one month follow up visit for Dads radiation treatments. We mostly discussed how Dad is feeling these days, and the results of the bad MRI a few weeks ago. Dr Brachman commented on the MRI stating that "he was not happy with the results then, and that he is still not happy after reviewing them again just before our visit." However he did explain the radiation is still working and we will have to see what the July 9th MRI shows before we/they come to any conclusions. He did some physical and verbal tests with Dad yesterday - Dad did really well with the physical tests, which means his strength is good. Dr Brachman worries that with the 4MG/day steroid dose, Dad may begin to have sore joints, especially in his legs. Not yet though, keeping our fingers crossed! With the verbal test, Dad could not find the correct words for a couple of questions. This is pretty normal for him now though - he has a hard time remembering names, places, objects, etc. Some days it is worse than others. When we met with Dr Rekate earlier this month, he said the memory issues could be temporary or permanent - we won't know for awhile. Dad says " if that is the only thing wrong with me after all this, thats OK with me." We all agree. It actually gets pretty humorous with Patti, Megan, and I all trying to guess the word he wants to say - we have lots of laughs playing the guessing game! Dad is such a good sport too.

This past week was a bit rough for Dad as he didn't feel well. Mostly major fatigue and for a few days he had a bad stomach. He is good about resting though when he feels this way, and tried to do alot of it this week. Patti was not sure if they should go to Prescott with Dad feeling this way, so we called Greta, Dr Shapiro's nurse, to see how his blood counts were. She called back and said the counts were fine - the platelets were a little low, but nothing to worry about. So they decided not to cancel the trip. Dad can relax all weekend up there just as good as down here!

I got Dad some more of the "immune booster" vitamins to take this week. This time I got him a 10 day supply of "Imm-Kine" - he takes 2 pills 3 times per day. The company that makes the pills is right here in Tempe and is a cancer research facility. I am in the process of finding out more about the company and the other services they offer. I also got Dad some liquid Chlorophyl to drink twice per day. It is a very green liquid that doesn't taste like anything- he mixes one tablespoon in a glass of water. I got it because the lady who wrote the book, "Thats Unacceptable" (an 8 year survivor of the SAME type of brain tumor Dad has) drank it all the time during her chemo treatments. I am not sure exactly what it does, but it is something to do with helping keep the blood cell counts up - and the author attributes her never having low counts to drinking this green stuff. Its worth a try...right!

The book "Thats Unacceptable" is an awesome book - I read it, and now Dad is reading it. The author, Rebecca, went through all the same stuff Dad is - it is so good to have a long term survivor to identify with.

We had another "roommate" dinner with Dad, Patti, and Megan this past week. This time they came over to my house and we made spagetti with home made pasta sauce. I posted a new picture yesterday - of the "roommate" dinner we had over at Dads house when Aunt Pat was here. Thursday night, a friend of mine from work, Shalegh Ryan, made a wonderful lasagna dinner for Dad - with home made peanut butter pie too! Speaking of food, Dad feels like he has gained alot of weight from the increased steroid dose - which "turns off" that little voice inside you that says "ok, I am full". But we found out yesterday that he is still pretty much the same weight - it goes between 205-210, and has been that weight for the past few months. Dads weight is just redistributed now though, his legs are skinnier and his belly is bigger. Nothing to worry about, it is really hard to control that appetite when he is on the steroids.

Thats all for today - the next news we will get will be on July 9th, so I will post another update then. Until then, we will be down here ENJOYING every day, and having FUN with Dad!!

Take care, Be healthy, Love, Sheri

Wednesday, June 06, 2001 at 10:14 AM (CDT)

Hello!

On May 24th Dad finished his 2nd round of 3 Chemo treatments with no major problems. His main symptom that week was fatigue, which is caused by the combination of the Radition (which is still working away in his brain) and the Chemo. The Dr.'s say that 6 weeks after Radiation is over is when he should get his energy back. That will be around the June 27 time frame. Even though Dad felt tired he still pushed to do little things - sitting in the chair ALL day made him feel even MORE tired. So in the mornings we ran errands and in the afternoons he rested. My friend Jennifer Ellis made a wonderful dinner for us on 5/22: vegetarian Lasagna, spinach salad, and homemade chocolate chip cookies! Outstanding :)

On May 29, Dad had an MRI at 12:30. Dad, Patti, and I then went to meet with Dr Shapiro (Chemo Doctor)at 2:30 to discuss the results. Dr Shapiro has a bad way of communicating to patients/family and he gave us quite a scare that day. During the apt he brought us into a room where we all viewed the MRI scans. He was looking at Dads scans for the first time too. As he looked over the scans and we stared at them, not knowing what to make of them, he said that the tumor was still there and it looked like it was larger and had fingered into other areas. He was scrolling back and forth between the scans taken that day and the scans used before Dads Radiation started (which were taken to map the remaining tumor and mark where they were going to direct the Radiation beams).

All sorts of thoughts and questions ran through our heads and we were all petrified. Dr Brachman had told us "no bad news is good news" with this first MRI - and now we were getting bad news. Dr Shapiro told us it was too early to tell if the Radiation even was working or if the type of Chemo (BCNU) they were using was working. He was confused on why the scan was scheduled AFTER the 2nd round of Chemo and not BEFORE it. Sounds like he wanted it before, so if he saw the tumor was not responding, he could change the type of Chemo they used. In any case, we left feeling totally confused and scared. Dr Shapiro did say we could increase Dads steriod dose up to 4mg per day - this potentially will help Dad remember more words and not feel so confused. (We were trying to wean him off the steriods, because in the long run they are bad for his bones/joints). However, if his memory loss's that seem to be getting worse are caused by swelling, and not the tumor growth, then the increase in steroids will give him relief and will reduce the memory problems. Its a temporary fix, but will help Dad to have better days right now. And that is important.

After Dr Shapiro's apt, we walked right down to Dr Brachman's (Radiation doctor) office to see if he could see us and help us understand what was going on. He was not there, but we did talk to Julie his nurse, and she said she would make sure he reviewed the scans and would call us.

What a day that was... NOT the news we were hoping for. We left feeling so sad and scared.

We had a trip planned for Dad, Patti, Megan, and I to drive to California for a 3 day weekend that Thursday May 31 - and I just could not WAIT to get out of town, forget all this %$#@, and go relax with Dad Patti and Megan! I think we ALL felt that way. So Thursday at noon we were "off like a dirty shirt" as Dad says, and our our way to Los Angeles and the Sunset Strip in Hollywood. We escaped reality for those 3 1/2 days and had a AWESOME time together in LA. Dad was a trooper and it was like nothing was wrong with him the whole weekend - we were on the GO non-stop! We went to Universal Studios, ate at the Polo Lounge at the Beverly Hills Hotel, toured the stars homes in Beverly Hills, ate at another famous place called Crustacean (where we saw Phil Jackson and Rick Fox from the LA Lakers), ate at the House of Blues (saw the Hanson Brothers - a young trio of boys that Megan was so excited to see in person!), stayed at a great hotel right on Sunset Blvd, walked up and down Rodeo Drive, and had LOTS of fun and laughter!!!! It was a perfect trip that none of us wanted to end.

Sunday night we arrived back to reality... and had got a call from Dr Rekate (Dads Neurosurgeon). He wanted to see us Monday at 3pm. Reason being he was bringing up Dads case to the Tumor Board again Monday at noon - due to the MRI and our concerns. Monday morning his office called and had to cancel the 3pm apt. due to 4 emergency surgeries that had just come up. We were told he would call us later in the day. He did call and was able to conference us all in so Dad, Patti, and I were all on the phone. He explained to us first that he was not sure WHY this MRI was ordered so soon. (We didn't order it!) He said the Tumor board reviewed the results and the consensus was to do nothing at this time - due to the fact the Radiation is still working (and can continue to work for up to 6 months) and that Dad just had Chemo. He said Dad is in a "holding pattern" right now -to give the treatments more of a chance to take effect on the tumor. They will do another MRI the week of July 9 and go from there. We asked him to clarify Dr Shapiro's comment that the tumor was larger or more enhanced... Dr Rekate explained "there is a difference in the pattern of enhancement" with the tumor, "it is still in the same areas however", and "its not what they want to see". OK - so we are still confused at this point and asked Dr Rekate if we could come in to see him and try to understand this better. We now have a meeting with him this Thursday at 1pm.

Its a waiting game from now until the week of July 9th. In the meantime, we will meet with Dr Rekate on June 7th and with Dr Brachman on June 22nd, to try to understand this all better.

The treatments Dad had are continuing to work - and they BETTER work some MAJIC!! Dad just needs to relax and be healthy - and give the treatments the best opportunity to kill the tumor. With lots of prayers and everyone's positive thoughts coming to Dad, who know what miracle is in store for him - we are all thinking POSITIVE. The increase in the steorid from 1mg to 4mg has helped Dad - he remembers more words now and dosen't fill in the wrong words as often.

Megan is off on a camping journey to the Grand Canyon this weekend with her friend Laura and family. Dad and Patti will go out on a "date" Friday night to celebrate Patti's birthday - something they have not been able to do since before this all started!

Hope everyone is doing well, enjoying EVERY minute, and never sweating the small stuff...because "ITS ALL SMALL STUFF!!" :)

Love, Sheri

Tuesday, May 22, 2001 at 07:50 AM (CDT)

Dads Radiation treatments are now officially OVER! He finished last Wednesday and was very excited to walk out of that office for the last time...until next month (6/22) when we have a follow up visit with Dr Brachman. 36 Radiation treatments are under his belt- Congratulations Dad!

As Dads body gets used to the lower dose of steroid he is taking, he has been feeling pretty bad, especially in the mornings. Last Tuesday 5/15 he ran a small fever - 99.7. He also woke every morning with a headache. He takes the steriod pill around 5:30 every morning, so usually by about 9:30 am he is feeling "better". Last week Dad was probably the MOST tired he ever has felt - he spent most of the days taking long naps and relaxing. He was also forgetting more words than usual, but we think it was from decreasing the dose of steroid down to 1mg. We told Dad to just try to stick it out for awhile as his body adjusts, and the symptoms will improve. They have begun to get better - he has more energy this week compared to last week. However, he has reported to be having some trouble reading the paper (since last Thursday 5/17) which is probably from the decrease in steroid also - we will watch this and if it continues will call Dr Brachman.

I am staying at his house this week Mon-Thurs - and right now Dad is out on a walk! It is 6am and the weather is beautiful - sunny and cool. This is the first time he has gone on a walk in awhile, so this means he does have more energy!

On Dads last day of Rad, we also had an appointment with Dr Headly - the ear, nose, and throat doc. After a hour wait in a waiting room filled with crying and screaming babies we were so EXCITED just to get in a room to see the dr!!! Turns out he is a great guy. He looked in Dads ears and saw that they were filled with fluid. He recommended putting tubes in his ears, which would take care of the problem. Dad also did a hearing test - and they found his hearing to be about 1/2 of what a normal person hears! So right there Dr Headly did the procedure and put the tubes in his ears - the tubes penetrate his eardrum and go into his eustacian tube - allowing the fluid to drain. The tubes will fall out themselves, usually after a year or so. I watched Dr Headly do the procedure and also was able to look inside Dads ear through a microscope- to see inside the eustacian tube where the fluid was! Wow. It all drained out, and Dad had immediate relief - he could hear better too! We left the office and Dad was happy to report he could actually hear my radio playing in the car- uh oh, guess its back to talk radio now :)

Last Wednesday at the last Rad treatment we met with Norissa, the clinical research nurse. Dad filled out a survey for the study he is participating in and then Norissa gave Dad the verbal test - like the ones he would get at the beginning - "what day is it, what year, who is the President" etc. Norissa also informed us Dad has to continue to get his blood work done every week until the chemo treatments are over. We also were surprised to find out he started his next chemo round on Tuesday -5/22 - today! We also got a calender that shows when the rest of the chemo treatments are scheduled. Every eight weeks for 6 rounds total. The dates are: July 17-19, Sept 11-13, Nov 6-8, and Jan 2-4, 2002. I guess thats why they call this a "journey"!

We changed where Dad gets his blood work done so it would be closer to home. There is a facility a few miles away where Patti got all her blood work done, so we set it up there. Greta, Dr Shapiro's nurse, called and set up a standing order for him to go there. Yesterday, Dad drove himself there and got the bloodwork done - we should know the results later today. Dad has been driving around the vicinity here - running small errands - shhhhhhhhh :) He is very careful though, and only goes when he feels really good.

Sunday we all went to dinner to celebrate Dads radiation being over. We went to the Cork and Cleaver which is in Scottsdale. Our Kalamazoo friends and relatives know this restaurant, there is one in Kazoo too! It was great - Dad and Megan had yummy NY Strip steaks. We all split a piece of mud pie for dessert - it was as big as my head!

Dad and I are off for his first of three chemo treatments in round number 2. We HOPE he will not have any bad side effects from this chemo, just like last time. Keep your fingers and toes crossed :)

Have a wonderful week and hope everyone is happy and healthy! Dad is here and he says to say thanks for all the comments posted in the guestbook - he really appreciates all the support.

Love, Sheri

Monday, May 14, 2001 at 11:20 PM (CDT)

Now Dad is down to only 2 more days of Radiation - Tuesday and Wednesday of this week!!

Last week went pretty well. Dad was very tired and had precious little energy.

Patti kept up the Jamba Juice tradition and helped Dad continue his "grass shots" all week long. Dad, Patti, and Megan also continue to eat healthy meals - and when they do eat meat, its most definetly HORMONE FREE!! There is a place here in Phoenix called Kiel's market where they sell hormone free meat and dairy products. The prices are the same as you find in the normal grocery store too!

Later in the week last week, Dad tried to wean down again to 1mg per day of steroid, but his memory would continue to fail him. Thursday morning he had a slight fever and a bad headache. When Dad and Patti went to Radiation, they directed him to take another mg of steroid right then and there. He did and then took another with his dinner. After that, Dad began to carry his steroids with him, in case of any weird feelings or occurances like Thursday. Turns out lowering the steroid dose causes the headaches. Our bodies stop producing its natural form of steroid when we take it like Dad is, and then when we try to stop taking it (the Decadron), our body may not start producing it naturally right away - causing headaches. So Dad just has to continue to try to wean off, until his body kicks back into gear. After Thursday, he went back to taking 1mg in the am, and 1 in the pm.

We met with Dr Brachman this morning - our last "scheduled" visit with him! He wants a follow up visit with Dad in 4 weeks. He will review the MRI that Dr Shapiro ordered for Dad on the 29th and get involved if necessary. Otherwise, Dr B had lots of positive comments about Dad: how great he looks, not as much hair has fallen out as we thought, and how well he seems to be doing with these treatments. He commented he did not foresee any bad news at the 5/29 MRI. Dr Brachman is a wonderful doctor - one of those who will give you ALL the time you want to discuss questions, and explains everything so its easy to comprehend.

Dad also got a blood test today- the results were OUTSTANDING - white counts were 8,900 and Platelets were 356. Dad should start to feel more energy in the coming weeks as his body continues on this upward trend. We are thinking that about 2 weeks from this Wednesday is when he should feel the best he has felt in a LONG time - on May 30th. That is when the Radiation will be slowing down its effects. The only problem is Dad will start his 2nd round of Chemo sometime around that exact day!! Boo. But the Chemo takes awhile to "get" to him, so we are hoping he has at least one "good" week!!

One thing Dad does need to start doing is going on walks. Exercise is key (to keep his legs from getting sore and stiff), and lately he has been way too tired. The one thing he has been doing, which feels really good to him, is swimming a few laps in the pool after the suns goes down. Keep it up Dad! And he is still "juicing" and eating lots of fresh fruits and veggies! In fact, I am looking forward to freshly juiced apple juice when I go to his house tomorrow morning to pick him up for treatment - yum!

Other than the 2 Rad treatments this week, Dad has an appointment on Wednesday @ 3:30pm with the Ear, Nose, and Throat Doctor, Dr Headly (fitting name). We will see if he can shed any light on why his head feels so clogged and his hearing is bad.

Mother's Day was very nice for us all. Dad rested all day so they (Dad, Patti, and Megs) could go to the "Chart House" - a seafood restaurant on the lake at McCormik Ranch. My Mom was here from Las Vegas, so I spent the weekend with her. Happy Mother's Day to all the MOMS out there too!!!

Talk to you all soon :) Keep in touch!

Love, Sheri xoxox

Monday, May 07, 2001 at 11:14 PM (CDT)

After today's treatment Dad only has 7 days left of Radiation - hard to believe he has already completed 29! In the Homestretch!!

I was Dads escort last week - and we kicked off a new healthy habit... stopping at Jamba Juice after Radiation and doing a "wheatgrass shot"! The first day we were both scared - scared of the taste - what would liquid grass taste like?! And you may be thinking...why would anyone PAY to drink grass?! We are trying it because the literature says wheatgrass is VERY powerful in boosting your immune system - and thats just what Dad needs right now with his low white blood cell count.

The wheatgrass taste - it wasn't bad at ALL we both discovered.. and have done a shot every day since (except Sunday)! Each day we get our "shot", along with a yummy "chaser" of course, and before we drink we toast and say "bye bye tumor!" It feels great by the way.

Last Monday we reported to the hospital at 8am to have Dads blood counts tested - they wanted him there before the Radiation to see if the counts were ok to continue treatments. His platelets came back @ 107 and white blood cells were at 2,000. These numbers were low, but they decided to continue Radiation. We met with Dr Shapiro (chemo doctor) Monday afternoon and he asked Dad to have another blood test Thursday morning. (They want to monitor how low Dads counts go in order to establish a baseline for the next chemo which will begin at the end of May - and more importantly to make sure the counts don't go too low where Dad would need antibiodics).

We met with Dr Brachman last Tuesday 5/1 and discussed Dads steroid dose. Since Dad has not had any memory loss episodes, he lowered the dose from 4mg per day down to 2mg per day. We also talked about Dads problems - hearing problems, head feels fuzzy all the time, forgetting words or "expressive aphasia", foggy feeling, fatigue all the time, out of breath after small tasks, and prostate problems. The fatigue is normal...caused by the Radiation and the low blood counts- this should improve about 2 weeks after the Radiation is over. For the hearing problems Dr Brachman was puzzled. He referred Dad to a Ear Nose and Throat doctor, Dr Headly - we are seeing him next Wednesday 5/16. He suggested Dad try Affrin Nasal Spray for the foggy, fuzzy feeling - he said the swelling from the Radiation could be causing it. The Affrin helps reduce swelling in the membranes of sinuses, and may give relief. For his prostate, Dad is taking Saw Pametto, 320mg per day, but since it takes 30-45 days to work, Dr Brachman perscribed Flomax. This has helped a little, and he is now only getting up once or twice a night. Dads weight on 5/1 was 202.

Dad and I also stopped at the health food store and got some MGN 3 - basically a 911 for immune system boost and to get cell counts up quick, specifically for cancer patients. (It is a polysaccharide dietary fiber formula from rice bran- hemi cellulose B) produced by hydrolysis of rice bran with the enzymatic extract of shiitake mushroom) He is taking 4 pills 3 times daily now. Until the counts increase significantly. We also picked up some Emu oil for his incision, which was sore around the ear where his glasses hit.

On 5/3 we got Dads blood counts again - white count was 1,500 and platelets were 241. Did the counts again on 5/4 and the white count was still down at 1,500 so Dr Shapiro decided to put Dad on a 7 day antibiodic - to make sure Dad does not get an infection. Especially over the weekend. Dad was told to take his temperature every day and if it was over 101 go to the ER.

Luckily the weekend went smooth. Dad stayed isolated away at home ...away from as many germs as possible! Dad says last week was the most tired he has felt - he slept alot during the days, which he needed to do.

Today, we went to treatment, saw Dr Brachman, and got another blood count test. Dr Brachman lowered Dads steroid again- down to 1mg every morning. The blood test came back with Flying Colors - the white cells were 2,700 and the platelets were 444!!! Who knows what caused it to jump up that fast - Dad did lots of healthy things for his body last week. We are just so very thankful.

Dad did have a memory loss episode today from 11:45 - around 1pm. I was with him- and giving him 1mg of steroid did the trick. I called and reported what happened to Julie, Dr Brachmans nurse. She spoke with Dr Brachman and he told us to keep Dad on the 2mg per day until he sees him again. We will continue to see what is the lowest dose Dad can tolerate without having the memory problems.

This week Patti and I are both escorting Dad. Patti will take him Tuesday and Wednesday and also next Monday. Dad also has another Pulmonary Function Test Wednesday morning - to prepare for the chemo at the end of the month.

His next MRI is scheduled for 12:30pm on 5/29. Dr Brachman explained to us today that "no bad news is good news" and that is all this MRI on 3/29 will tell us. The "best" MRI will come 3 months after Radiation. The reason they do one only 2 weeks after Radiation is to rule out any really bad results. 10-15% of people don't respond to radiation - or their tumors don't respond. And in those cases, they don't want to wait 3 months to find that out. What we want and pray for is "no bad news" which means specifically the tumor has not spread, and it looks basically the same as when we started Radiation.

Wow, lots of info to report today! I think thats enough for this week...

One more item real quick...Patti, Dad, Megan and I send out lots of LOVE and THANKS for all of your support and prayers -it helps us all continue to be strong. Love, Sheri

Sunday, April 29, 2001 at 10:18 PM (CDT)

Entering the 6th week of Radiation this week! After that, only 2 more weeks to go!

Uncle Bill drove Dad to all his treatments this week - they were like 2 peas in a pod ! :) Everywhere they went, people knew they were brothers... Hmmm wonder why! Not only do they look alike, but they talk alike (and when they are together, they talk TWICE as fast - my head was spinning just trying to keep in the conversations :)

Dad missed one day of Radiation this week due to low blood platelet count. He got a call on Tuesday afternoon from Greta, who works for Dr Shapiro (the Chemo Dr). Dad has been having his blood tested every Monday for this very reason - to test his blood counts. If the blood platelet counts are low, there is a risk of infection from the Radiation. When this happens, Dr. Brachmans office immediately stops Radiation on Dad until his counts come back up. They had Dad skip his Radiation treatment Wednesday morning. Thursday morning he went in 1 1/2 hour early to get his blood counts tested again. The Radiation staff told him to wait around - if the counts had gone up - he could have his treatment. (His platelet count from Monday was 42 - should be around 100) We asked Julie, the Radiation nurse, why the platelet count drops. She told us it was most likely from the Chemo. The Chemo he had on 3/27-3/29. She explained it usually takes 3-4 weeks for Chemo to affect the platelet count - so this is normal. She said his cold last week was not a factor in the low platelet count.

To help build up his counts we were told to "Juice" -which also can dramatically boost his immune system - which he NEEDS since his body is working to fight so many things right now! More on "juicing" later. His platelet count came back on Thursday - and it was good! He was able to have treatment - phew. Dad was happy he only missed one day - the final day is now 5/16.

Back to "juicing"! Dad, Uncle Bill, and I ventured into the health food store Wednesday evening - Keil's market. Dad had given me a "juicer" for my last birthday, so we were all set with that and 2 "juicing cookbooks". Dad picked out a few juice recepies that looked good, and we made our way into the vegetable section. We filled the cart with carrots, beets, celery, ginger root, parsley, garlic, spinach, lemons, apples, cantelopes and on and on and on! (Uncle Bill must not make it in to the grocery very often as he was throwing the vegetables right into the cart - without a bag or anything!) When I said something he said "thats how we did it in Bangor!" It was fun, and we were all 3 laughing the entire time. A little different than what Dad and Uncle Bill usually do - beer and Native New Yorker!

Dad is now becoming a "pro juicer". The first few we made "taste like a carrot with dirt on it" Dad said - but as he plays around with what to use, they taste better and better! The fruit ones are the best. And the health benefits are amazing!

Uncle Bill left on Saturday. They did make it to their two top favorites before he left, Nello's Pizza and Native New Yorker. We were thankful Uncle Bill finally saw some REAL Arizona weather while he was here - it even hit 100! No golf this time- but Dad promises to get better so Bill can come out again (with Aunt Peggy!) and they can have a golf/beer weekend - none of this weird "juicing" stuff :)

It has been a relaxing weekend. Dad is feeling much better from his cold, but still taking it slow so he dosen't overdo anything. (By the way I made a typo on the last journal - it is Pnuemonia he at risk of when he gets a cold, not Leukemia - sorry!) The only complaints Dad has now is his head feels very clogged all the time, making it hard to hear and hard to tell how loud he is talking. He is also more tired every day - naps help alot. We will ask about his clogged head at our apts. tomorrow.

Monday 4/30 we have a super busy day. We will get another blood count at 8am - to make sure those blood platelets are still ok. If all is well, Radiation will follow at 9:30. (Lets hope the "juicing" is working!) Then we meet with Dr Brachman at 10am. At 2:30 we meet with Dr Shapiro to discuss the next round of Chemo treatments and his current symptoms.

Thanks again for your help this past week Uncle Bill - we hope you had a safe trip home to Kalamazoo!

Thanks to Kelli, my best friend, for the "OUTSTANDING" dinner she prepared for our family Thursday night.

And thanks to everyone..for ALL your thoughts and prayers every day. Dad is doing great so far and he is thinking POSITIVE!!

Have a great week, Love, Sheri

Monday, April 23, 2001 at 11:35 PM (CDT)

Today, Dad is at the half way point to finishing his Radiation Treatments! The last day of RAD treatment is May 15th. So far the treatments have gone well... no major side effects. His hair, which I was betting would be gone by now (in the treatment area), is still there- a few missing here and there, but nothing obvious to the eye. The left side of his face is a bit red now - one would think he's been out in the sun without sunscreen.

On Monday 4/16 Dr Brachman lowered Dads steroid dose down to 4mg per day. We will see how he does with this lower dose, and if no memory loss, Dr may lower it even more. The week went smooth with no memory loss incidents. We meet with Dr B again tomorrow, 4/24.

Dad's cold did get worse this week, and he ended up sleeping alot during the days in order to fight it off. Thursday, the cold moved down into his chest, causing a bad cough. Thursday night Patti and Aunt Pat took him to the Urgent Care- so he wouldn't have to go the weekend without any medication. (We weren't able to get a hold of any of the doctors - and we were told to bring him in if ever unsure about his condition). The Dr at Urgent Care did whats called an O2 test - to make sure his lungs were functioning properly. With the surgery, Chemo, and the RAD treatments, his immune system is fighting hard, and a cold can be dangerous if left untreated (risk of turning into Leukemia). The test showed a 97%, which meant everything is ok. The Dr gave Dad a perscription for Amoxcicillan for 10 days and some strong cough syrup. Today Dad is feeling better and says the cold is slowly going away.

Dad went to physical therapy last Monday and today 4/23 as well. This is for his jaw, which still has limited movement due to the surgery. (His temporis muscle had to be cut.) The therapist measured his jaw last Monday and it would only open 20mm. Today it was at 25mm. A normal jaw will open 40-45mm. Dad learned daily stretches that both help his jaw open wider and retrain it to open correctly. Right now his bottom jaw has a tendancy to slide to the right when he opens it, favoring the strong side of his face. Dad promised to work on this - remember stretches every day Dad!!

Last Monday 4/16 we had a woman who specializes in nutrition for Cancer patients come over to Dads from 4:30 - 9pm. Her name is Agi Lidle and she cured herself from a severe case of breast cancer four years ago. Agi showed Dad, Patti, Aunt Pat, and I ideas on how to cook wonderful, healthy meals - and prepared us some wonderful dishes to eat right then and there. One word...YUM!! The most important information she taught us was how to read food labels and what to look out for when shopping for groceries. There is so much research out there on all this stuff, and most people just don't take time to educate themselves about whats been discovered in the last 5 years. Agi writes a newsletter called "The Healing Voice" and subscriptions are available for $29.00 per year - 480-948-3386. She really opened our eyes to how eating "right" can make drastic differences in our health and how we feel every day. Thanks Agi!

Friday morning Dad and Aunt Pat got a surprise when Rick (Aunt Pat's son) showed up with me at Dads Radiation treatment! Rick came in from San Jose, CA to see Dad for the weekend - since his Mom was here and Uncle Bill was arriving Saturday from Kalamazoo.

We all had a FUN family weekend - and ran Dad ragged! He did get to rest a bit - between Nello's pizza Friday night, the Diamondbacks game Saturday night, church on Sunday am, and Roy's restaurant Sunday afternoon!

Rick and Aunt Pat left early this morning - THANKS Aunt Pat for a WONDERFUL job while you were here- it went so fast :( ! And thanks for the awesome surprise Rick!

Uncle Bill arrived Saturday - we all knew he was here though...as the weather was true to form for an Uncle Bill visit... rainy and 50 degrees!! Luckily that only lasted one day. He is Dads escort this week - so glad you are here Uncle Bill! My only concern is that Uncle Bill and Dad will be out at the golf course every day INSTEAD of going to treatments.... just kidding!!! We look forward to that day, thats for SURE!!!

Sunday, April 15, 2001 at 10:31 PM (CDT)

Happy Easter!

Aunt Pat has been here since last Sunday evening - so NICE to have her here with us. (Her visit began with a flat tire on the way home from the airport... but since then everything has gone smoothly!)

Aunt Pat took Dad to his treatments this week and they all went well. The three of us met with Dr Brachman Monday morning and he decreased Dads steroid dose down to 6mg per day - he was at 12mg since the Friday before, due to the memory loss incident. He explained to us about the positives and negatives with taking this type of steroid -and that it is not the kind like the bodybuilders take, where you bulk up quickly. The steroids are a necessity for Dad because they decrease the swelling, and the swelling is what causes the memory problems. Dr Brachman explained the swelling is normal, and that he was not concerned. He said there is not alot of room in the brain for swelling - it has the bony cover surrounding it - so it affects Dads "good cells" causing memory problems. The radiation has not had enough time to cause an impact on the swelling, so in the meantime the steroids will do the trick. As the radiation begins to take effect, Dr will wean Dads dosage down.

Taking this type of steroid causes "bone atrophy" which would make it hard for Dad to walk up and down stairs, exercise, etc. The bones become brittle fast. It also causes intense hunger (Dad has had that symptom for years though :) and insomnia. Needless to say we were glad the dosage was cut in half! And from Dads response this week, the dosage for now looks like the correct amount. He is taking a half a pill (2mg) 3 times per day. If he does have a memory loss again, he is to take a whole pill for the rest of the dosages that day, and see the Dr the following day - at his radiation treatment. We will cross that bridge if we come to it.

On Monday, we also had the radiation nurse take photos of Dad while he was in the treatment room... a few of those pictures will be posted here later this week! Dad reports the radiation procedure is "quick and painless". On Mondays, after the treatment, they also do X-rays, to confirm the radiation is hitting the correct area.

Dad has been getting lots of rest as he has been a little more tired lately. He did have a bit of a cold at the beginning of the week, but took care of it with a few good naps.

Dad is religous about wearing his hat when he is outside - the radiation makes the skin very sensitive. No major hair loss yet - but it is starting to fall out (Uncle Bill - he may have you beat by the time you arrive!). Dad is such a good sport about ALL of this stuff- and he says "the hair loss is a small price to pay to get rid of this thing!"

This week, Aunt Pat and Dad were busy in the mornings running errands, going on walks, and catching up on old memories. Dad is still doing his yardwork, which is great... yardwork is a theraputic activity for many of us in the Hauke Family; and if you know Dad - he ALWAYS had and still does have the best yard on the block!

My roommates and I brought over homemade vegetarian lasagna on Tuesday night, so Aunt Pat was able to meet Amy, Suzann, and Suzann's boyfriend Lance.

On Thursday, Aunt Pat, Megan, Dad, and I visited Suzann's first grade class- it was their Easter celebration and she invited us to stop by and say hello! (She is a teacher at Mitchell School - which is in a very poor area of Phoenix). The little first graders were so cute and extremely well mannered - they called us by name: Mr. Butch, Aunt Pat, Miss Megan, and Miss Hauke. It was a wonderful 2 hours - and we think Megan may have found her calling... as a first grade teacher!

Today we went to church and brunch - it was a gorgeous, relaxing Easter day.

Aunt Pat is here until next Monday (yeah!), and we are looking forward to Uncle Bill's arrival this Saturday!

Have a wonderful week... Sheri

Saturday, April 07, 2001 at 08:32 AM (CDT)

This week was "my" week to take Dad to and from his treatments. I was so excited and thankful for the extra time Dad and I had to spend together. I spent the week over at Dad/Patti/Megans house.

The treatments went well - they are so quick and efficient at the Radaiation Office. Each day we arrived about 8:45, and usually by 9am, we were on our way. Monday we stayed to meet with Dr Brachman - this will happen every Monday during Radiation. He examined Dad and discussed decreasing his steriod dose from 4mg/day to 2mg/day next Monday. We also went up to Dr Shapiro's office to leave a sample of Dads blood - another weekly occurance. Free to go after that.. we were off to the Coffee Cart! Why that is such a comforting event, I do not know. But it is, and we proceeded to "have a coffee" each day after (the coffee cart got old fast, so we switched to Starbucks - there is one on every corner ya know)

The rest of the mornings we spent running little errands here and there, and then Dad spent the afternoons resting. We had dinner delivered, thanks to Patti's friend Karen, Mon. Wed. and Fri. - wonderful healthy meals!

Dad got a haircut Friday morning with my special friend Ricky from Rumors. Ricky had cut Patti's hair after we discovered she had cancer - and he had told her he had real good feelings that she would be ok. So Ricky gave more of those good vibes to Dad on Friday while he got a "smooth" new haircut. (No MoHawks or anything crazy yet! His hair has not begun to fall out - it is right around the corner though, they tell us) Thanks for the "good luck cut" Ricky!

On Friday morning after the haircut, we went over to the mall to pick up something I needed. While we were at the mall Dad had a memory loss episode - the first one since surgery. Dad had walked down to the restroom and came back and met me in the store. He came right up to me and said he felt dizzy. So we sat down on a couch that was right there, and then he said he had to get out of the store. We left the store and went and sat in the atrium area. I was asking Dad if he felt better and he was looking at me funny. I started in with the questions I had heard the Doctors ask - whats my name, whats this (pointing to my watch, cell phone, etc.) and he didn't know any of the answers. So camly we walked out of the mall, holding hands, and to the car. I called Dr Rekate's office, but no one was there - so I called James/Dr Walker's office and she told me to come right in. (She said don't go to emergency, you will just end up waiting hours and then get looked at by a confused intern) Dr Walker is a NeuroOncologist, and she sits on the Barrow Tumor Board. She was the one responsible for Dad getting into Barrow for his care. We went to Dr Walker's office(with Dad asking lots of questions the whole way there, as none of this made any sense to him). Dr Walker examined Dad and explained his brain was swelling and we needed to increase the steroid dose from 4mg to 12mg per day over the weekend until we saw Dr Brachman on Mon. The steroids will reduce the swelling and his memory problems will stop. I drove Dad home, made him lunch, and gave him 6mg of steroids. After about 1/2 hour, he was normal, could identify everything I pointed out and all of our family names. Phew! He rested for the rest of the afternoon. He also reported that when he woke up Friday am he did feel a bit lightheaded, and there seemed to be some pressure in his head. We are talking about Dad writing a journal every morning, so we can begin to be more proactive with these occurances.

By early evening Dad was feeling good and we attended the Opening Night of Diamondbacks baseball. It was a fun time and OF COURSE we had a hot dog and a beer! We were all tired by the 6th, so we headed home - and I still don't know who won :)

On another note...Our family suffered a tragic loss this Wednesday with my dog Cooper. On Monday evening Cooper was attacked by a Rotweiler. His little body couldn't take it, and on Wednesday morning he passed on. Cooper was so much more than a dog to our family - he was my baby, my best friend; he brought us all smiles and laughter with his endless energy and tricks - and also the way he loved to snuggle when he was finally tired. Cooper was smart in so many ways; he loved his life every minute of every day. This has been such a devastating loss for us - I want to say thanks to everyone for being there - and especially for Tony who has been there for me this entire week. Tony and I picked out Cooper together, and he was our "Little Bubba". We have decided to have Coopers body cremated and will put the ashes up on Camelback Mountain- on his favoite rock he loved to sit on. Cooper's wonderful spirit is with us now and will help us through these trying times ahead.

We are looking forward to Aunt Pat's 2 week visit - she arrives this Sunday at 6pm. Yeah!! It will be a eventful 2 weeks with Aunt Pat, and I will keep everyone posted on all the happenings!!

Much Love, Sheri

Friday, March 30, 2001 at 11:38 AM (CST)

We have GREAT news to report this week...

Dad is finished with his first round of Chemo treatments - with no problems to report!! He had both the Radiation/Chemo this Tuesday, Wednesday, and Thursday. On Tuesday, he had the Radiation first, then we walked up to Dr Shapiro's office where he got the Chemo. Kay put the IV in Dads arm and started the Chemo flowing. She said "this will take anywhere from 20 min to 4 hours, depending on how your body reacts to it". If it started to burn, she could slow down the flow, and the burning would stop. Well, leave it to Dad to take the whole thing in just 20 minutes! She also said he would feel like he drank 2 Martini's when he got up from the chair. (She must not know the HAUKE family!) He got right up and felt like nothing happened. The entire Rad/Chemo treatments took less than 1 hour.
Patti took Dad to treatments for the rest of this week and he continues to feel really good. The only side effects he has are fatigue and that sore jaw. We pray that this good fortune continues!!
Now the routine is just Radiation every day Mon-Fri until May 15. He has completed 4 of the 36 treatments. We also will meet with Dr Brachman (the Radiation Onclolgist) every Monday following Radiation - to check Dads progress.
The Radiaition treatments are at 9am, so Dad has the rest of the day to rest and keep his immune system strong. Patti works at Akimel School and has a very good friend Karen, who organized a plan for different people to bring over dinner every Mon, Wed, and Fri for 2 weeks. This has been such a blessing!! She even mentioned our attempt at a vegertarian (and fish) diet - so the meals have been very healthy, and as Dad would say...OUTSTANDING!
We added some photo's to the Photo Album today - take a look!
In my last message I did make a mistake with regard to the number of nickels in $1.30 - I said 27, but it is 26. Dad did get it correct - it was just me having a blonde moment on the computer...thanks Uncle Bill for being the ONLY one to point it out :)
I'll sign off today with a little saying I found in one of the Brain Tumor letters I read awhile ago, and now think of often...

"Courage dosen't always roar....
Sometimes courage is the little
Voice at the end of the day that says...
I'll TRY AGAIN TOMORROW

Monday, March 26, 2001 at 08:35 PM (CST)

Long day for Dad today - 3 appointments at Barrow... first, we went to the Radiation office for Dad to do one last trial run with the mask. His nurse for the "RAD" treatments is Tracy - really nice lady. The trial took about 40 minutes, then we were off to the Respitory dept. for Dads Pulmonary Test.

He will have this test periodically throughout the Chemo/RAD treatments so they can monitor his lungs. (They need to make sure he stays healthy!) Dad blew his heart out, then we went over to meet with Dr Shapiro - NeuroOncologist in charge of Dads Chemo treatments.

Dr Shapiro met with all of us, explained the Chemo treatment (BCNU is the type of Chemo he will get), and did a exam of Dad. He asked Dad a few quiz questions - to test his memory function - one question was interesting...How many nickles are in $1.30? I think we all stared at Dr Shapiro for a minute with blank stares/saucer eyes as the wheels were turning in all of our brains!! Patti and I were glad he didn't ask us, as we were still thinking of the answer when Dad spit it out. :) (its 27)

We also discussed Dads current symptoms - tired, lightheaded, stiff jaw, swelling on the outside of his head. The tired and lightheaded feelings are most likely still from the surgery. His jaw is stiff because in surgery they had to cut his temporis muscle (jaw muscle)- so it will be sore off and on for months while it heals. The swelling is fluid, and is usually more significant in the morning. Nothing to worry about. Dad will meet with Dr. Shapiro on a monthly basis.

We won't know how the treatments are affecting the gbm tumor until after the RAD treatments are over - when they do an MRI. This will be done a few weeks after RAD as it takes awhile for the RAD to get out of the brain after the treatments stop.

The actual treatments all start tomorrow - 9:45am. Dad will first do the RAD treatment, then go to Dr Shapiro's office to see Kay, who will be giving Dad the Chemo through an IV in his arm. He will have the RAD/Chemo for 3 days in a row, then no Chemo again until the RAD treatments are over. There will be 36 RAD treatments in all - the countdown begins tomorrow!

Patti has this week off work, so will be Dads personal Chauffer for the rest of the week. I will be wearing the Chauffer hat next week...then we are all so excited to have Aunt Pat flying in from Minneapolis for 2 weeks - on April 8th! After Aunt Pat's visit, Uncle Bill and Aunt Peggy from Kalamazoo will be coming out for a week! Uncle Bill sent a note - he does lawns, dishes, chauffers, etc...but no windows! No problem Uncle Bill - how about Megans gerbil cage? Just kidding!!

One of the positive things from this experience is how much time we have all spent together, and the quality time we will enjoy with Dads brother and sister in the coming weeks.

Aunt Pat also attended a Brain Tumor Symposium this weekend in Minneapolis - meeting lots of people and learning about BT's - she taped the entire symposium and is bringing copies of it with her in April. Thanks Aunt Pat - knowledge is Power!!

What else has Dad been doing.....

Last Thurs he went to lunch with my boss Joe Z - we had a great time at Keegan's, eating outside on the patio. Joe commented that Dad looks so good, maybe this is all a hoax and he is just enoying a few months away from IKON drinking margaritas poolside! Lots of good laughs at lunch - thanks Joe.
The weekend was busy, but also relaxing. Dad, Patti, and Megs went to a dog agility show at Westworld and then to Megan's band concert at school. Church on Sunday, then lots of relaxation watching the college bball on the tube.

Thats all for today! Love, Sheri

Monday, March 26, 2001 at 08:35 PM (CST)

Long day for Dad today - 3 appointments at Barrow... first, we went to the Radiation office for Dad to do one last trial run with the mask. His nurse for the "RAD" treatments is Tracy - really nice lady. The trial took about 40 minutes, then we were off to the Respitory dept. for Dads Pulmonary Test.

He will have this test periodically throughout the Chemo/RAD treatments so they can monitor his lungs. (They need to make sure he stays healthy!) Dad blew his heart out, then we went over to meet with Dr Shapiro - NeuroOncologist in charge of Dads Chemo treatments.

Dr Shapiro met with all of us, explained the Chemo treatment (BCNU is the type of Chemo he will get), and did a exam of Dad. He asked Dad a few quiz questions - to test his memory function - one question was interesting...How many nickles are in $1.30? I think we all stared at Dr Shapiro for a minute with blank stares/saucer eyes as the wheels were turning in all of our brains!! Patti and I were glad he didn't ask us, as we were still thinking of the answer when Dad spit it out. :) (its 27)

We also discussed Dads current symptoms - tired, lightheaded, stiff jaw, swelling on the outside of his head. The tired and lightheaded feelings are most likely still from the surgery. His jaw is stiff because in surgery they had to cut his temporis muscle (jaw muscle)- so it will be sore off and on for months while it heals. The swelling is fluid, and is usually more significant in the morning. Nothing to worry about. Dad will meet with Dr. Shapiro on a monthly basis.

We won't know how the treatments are affecting the gbm tumor until after the RAD treatments are over - when they do an MRI. This will be done a few weeks after RAD as it takes awhile for the RAD to get out of the brain after the treatments stop.

The actual treatments all start tomorrow - 9:45am. Dad will first do the RAD treatment, then go to Dr Shapiro's office to see Kay, who will be giving Dad the Chemo through an IV in his arm. He will have the RAD/Chemo for 3 days in a row, then no Chemo again until the RAD treatments are over. There will be 36 RAD treatments in all - the countdown begins tomorrow!

Patti has this week off work, so will be Dads personal Chauffer for the rest of the week. I will be wearing the Chauffer hat next week...then we are all so excited to have Aunt Pat flying in from Minneapolis for 2 weeks - on April 8th! After Aunt Pat's visit, Uncle Bill and Aunt Peggy from Kalamazoo will be coming out for a week! Uncle Bill sent a note - he does lawns, dishes, chauffers, etc...but no windows! No problem Uncle Bill - how about Megans gerbil cage? Just kidding!!

One of the positive things from this experience is how much time we have all spent together, and the quality time we will enjoy with Dads brother and sister in the coming weeks.

Aunt Pat also attended a Brain Tumor Symposium this weekend in Minneapolis - meeting lots of people and learning about BT's - she taped the entire symposium and is bringing copies of it with her in April. Thanks Aunt Pat - knowledge is Power!!

What else has Dad been doing.....

Last Thurs he went to lunch with my boss Joe Z - we had a great time at Keegan's, eating outside on the patio. Joe commented that Dad looks so good, maybe this is all a hoax and he is just enoying a few months away from IKON drinking margaritas poolside! Lots of good laughs at lunch - thanks Joe.
The weekend was busy, but also relaxing. Dad, Patti, and Megs went to a dog agility show at Westworld and then to Megan's band concert at school. Church on Sunday, then lots of relaxation watching the college bball on the tube.

Thats all for today! Love, Sheri

Wednesday, March 21, 2001 at 07:29 PM (CST)

Today Dad got the staples removed from his head - it didn't hurt a bit, he said! His apt was with Dr Rekate's nurse practioner, Donna. The only symptoms Dad is having now is fatigue, minor dizziness, and a HUGE appetite (side effect of the steriods). The next step is to start the Radiation treatments which we are told will happen early next week. We also have an apt with Dr Shapiro, Dads neuro oncologist, next Wed at 1:30 to discuss the Chemo and our questions. We decided today we need to get a special calender for Dad in order to keep all these appointments straight - he's going to be a busy guy these next 8 weeks!!! And the paperwork..... wow!
Tonight, we are relaxing outside enjoying the beautiful weather; Dad is enjoying a ice cold Miller Light :), and soon my roommates Amy and Suzann are brining over a yummy home cooked meal! We will eat outside on the back patio.
We want to say thanks to everyone for your prayers, phone calls, and love - it all means so much.
Love, Sheri, Patti, and Megan

Monday, March 19, 2001 at 05:43 PM (CST)

Dad is feeling good and looking better than ever! He still has a black eye from the surgery - we all think it looks kinda cute!!
Today we went to Barrow to get Dads mask fitted for his Conformal radiation treatments. He will wear this mask during every treatment. The treatments will be quick - about 30 minutes total; and given 5 days a week. The radiation treatments will be 7 1/2 weeks total.
He will also have BCNU chemo the first three days of radiation. They will give this to Dad through a IV. Dad will have a total of 6 chemo treatments given over 2 month intervals - so the second treatment will be after the radiation has ended.
This Wednesday Dad gets the 25 staples on his head removed. The incision was on the left side of his head - in a horseshoe shape starting at his ear. They didn't shave his head - so for now he still claims to beat Uncle Bill in that department :)
Dad says to say THANKS to everyone for all the support, prayers, phone calls, cards, etc. He can't believe all the support... and it has helped the family so much!
We love you ALL!
Sheri, Patti, and Megan

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