Health Update

So much has happened and finally I am on the blog with good news to report! Dad is doing quite well. Here is a list of things he can do that even 1 month ago seemed pretty impossible:

• Breathe without an oxygen machine.
  
• Breathe deeply without extreme pain.
  
• Walk with a cane (we have graduated from the walker).
  
• Socialize with his family - he joined us for Thanksgiving in his glider rocking chair. Then he impressed all of us when he watched us play frisbee dodgeball for a few hours. 
  
• Stand up (but still not straight up - but he is standing). 
  
• Join us for dinner at a noisy burger joint and have him insist on paying for dinner - it's a Christmas miracle! 
• Telling more jokes and stories than usual. 
• Laughing harder at his own jokes than usual - I saw him throw his head back a few times! 

Most importantly Dad is in good spirits. He was in the hospital then a rehab center but as of right now - he is at home.  He had a list of infections from viral to bacterial. The latest infection was on his foot. BUT right now he is infection free. His immune system seems to be working again. He recently met with his oncologist and was told that he responded to the treatments "better than expected." His protein levels are low (which is good) and the doctor said, "You are in remission!!!!!!!" 

Round 1:   Cancer vs. Phil = PHIL WON!!!!!! WHOOOEEEE!!!!! 

Turns out he has more Whiting blood in him that we initially thought. This makes Dad our little miracle. He has had prostate cancer, a heart attack, spinal surgery, multiple myeloma - he is one heck of a fighter. 

We are grateful for the prayers and faith from all of you. Dad current health is proof that prayers can be answered.  It certainly was a little scary for a while but as of right now we are all taking a sigh of relief. Phew. 

And again - thank you to the siblings in Utah who all take turns making sure Dad has the best care possible. They are washing laundry, cleaning, cooking and administering medicine to Dad. It is a full time job and they have worked tirelessly. Dad is well. We are safe and sound and grateful for the holidays, grateful for family, blessings and most importantly the gospel of Jesus Christ in our lives. 

More from Buffy

Dad is looking better. He is eating and drinking. They hope to have Dad out of the hospital by the end of the week. He had bacterial pneumonia and also a viral infection from the CMV. CMV is a virus that 98% of the population is exposed to at birth. It is something that typically is never activated, but when you have an weak immune system - it shows up. Surprise!!! He is on an anti-viral medication for at least month. But he is responding well to the medication for his bacterial infection. 

He was feeling well enough to tell a joke: 

 

A man is in a bar talking to friend and said, "My friend Roscoe is here. He knows everyone!"

The friend replied, "He can't know everyone!" But the friend insisted saying, " I really think he does." 

So the man is introduced to Roscoe and he asks him, "Do you really know everyone?" And Roscoe replied, "Well, yeah, I think I do." The man asked if he knew the Pope and Roscoe said, "Oh yeah! I am going golfing with him tomorrow - I need to see him to change the tee time."

The man refused to believe that he could know the Pope, so Roscoe finally invited him to go and meet the Pope. 

They got on his private jet and Roscoe told him that he was going to talk to the Pope before he went out on the balcony 

to talk to the congregation. 

The man waited in the courtyard with the crowd of people who had gathered to see the Pope. Finally the Pope came out and right beside him was Roscoe! The man could hardly believe his eyes. He asked the man next to him if he knew who was up on the balcony and the stranger said, "Well, I don't know that guy in the funny hat but he is standing right next to Roscoe!" 

Hospital Update

This is a new update from Buffy (more to come later today).

His pneumonia is getting better. His injured lung is not getting worse - it is in a holding pattern. He is on a machine helping inflate his lungs (but not a respirator). As of yet it his lung has not fixed itself. 

Dad's lungs are affected by the Cytomegolovirus (CMV) Infection. It is a virus that usually affects immuno-compromised patients. He is on anti-viral medications to help treat CMV. 

Broken ribs are a pain (in every sense)...

Here is an update from Jeremy: 

Well here is the update on Phil Brown. Dad managed to tear a hole in his left lung after the bronchoscopy. So this means that they have to put a tube in his lung cavity and suck out the air to fix the collapse lung. This most likely happened as he was coughing and he has a broken rib on  that side. The bronchoscopy was on the other lung. He is still having problems breathing and has moved up to the maximum amount of oxygen until the morphine wears off. So hopefully he will start breathing better and move from the mask back to the canula. 
The respiratory doctor came by to talk about the results from the test. They won't know until the cultures are complete on the pneumonia. So we are waiting for more information about that test. 
The doctor did give another possibility that there might be myeloma in his lungs so they are also sending out a sample to ensure it isn't present. (This is just a possibility - this is not certain). They might need a larger sample to check for they may have to do another bronchoscopy to gather more a sample. So that leaves a little more excitement for tomorrow. They don't want a biopsy into the lungs because there is a chance of infection and another collapsed lung with a biopsy. So I am praying that this won't be the case and it is just a matter of pneumonia that can be easily treated. 
It is more information but we honestly don't know anything until the results come back on the pneumonia and myeloma. Sorry for not alot of definite information about anything. Dad says hi and isn't enjoying the hospital much.

Love,

Jeremy

Newest Development

Dad finished his radiation about 2 weeks ago. Over the last few weeks, he has suffered a few set-backs unrelated to his multiple myeloma (ie - broken ribs, yeast infection in his throat) but we were hopeful that he would return to the joke-telling, easy going, paperback-book-reading Grandpa Brown in no time. 

We moved Dad into his new room downstairs (which looks great!) and due to fantastic organization on our sister's part, helping Dad with his medications is a breeze. He has a new flat screen TV, a padded reclining glider, a mini fridge and a fancy smancy new hospital bed to help make him comfortable. The best environment for a recovery and the best way to keep Dad away from the stairs :) 

However, his recovery has been slower than expected. His tumors have shrunk, but he developed a blood clot in his calf and in his lung over the weekend. His appetite has decreased, and it is still difficult for him to take a deep breath (not because of his tumor but because of his broken ribs).  

Our newest development? Today Dad checked into the hospital with a bout of pneumonia. The pneumonia is affecting the upper part of his lungs and he needs IV anti-biotic therapy but he is expected to be home by the weekend. We are hoping there will be no additional complications and a special thanks to Misha who waited at the hospital for 5 hours until they managed to find a vein to give Dad his antibiotics. 5 hours? What type of needle were they using? A straw from McDonalds? Thank you Misha!!!!

Four Broken Ribs? A Mere Flesh Wound!!!

Let's try this again; I posted these in the wrong order, but now they are right again. Enjoy!

Hey everyone; It is finally Joe's time to post on Dad's blog. I will do so with the disclaimer that I am not as current on his health as Buffy/Misha/Jacque/Debbie. That quadrumvirate still rules the day, and they have taken him to just about every doctor appointment he has had. If I got something wrong on here, I hope they will set the story straight for everyone. Here is what I know.

I had a the same question from several people via email that I will answer first, then I will post some news updates.
People ask me what the chances are that this cancer can be cured. The chances of that are zero percent. This is an incurable form of cancer. However, we are hoping to get Dad into remission, which just means that the Multiple Myeloma cancer goes dormant, and stops growing for a while. This isn’t like some cancers that can be removed, and then monitored to ensure that it doesn’t return. This type is always there since it is part of his bone marrow now.
Unless something new and worse pops up, this cancer will be terminal for him someday. All this work and treatment by his medical team are focused on making the cancer stop growing, and getting him into remission. If that happens, then we are talking about additional 2-5 years of pain-free life, with the damage to his skeleton healed with medications. That is the positive outcome, and the negative outcome is that he just keeps getting sicker, with no respite from the cancer until it is terminal. We won’t know for a couple of months how that is working, or what are his chances of reaching remission, but the doctors emphasize the positive for us.

If he can get into remission, then he also has a remote chance that he can undergo a bone-marrow transplant. If that happens, the median patient with a bone-marrow transplant is able to remain in remission for up to TEN YEARS. I think you all know which outcome we are praying for here.

The latest health report for Phil Brown is that he is still in a lot of pain, even with all the heavy-duty painkillers. I do mean heavy-duty; there is nothing stronger than what he currently takes every day to try and keep his pain down, other than pure morphine. 
And he has already asked me several times to head downtown and see if I can score some of that for him. So I did, but I just used it myself before I got back. I had a hangnail, you see…

Here is what he is taking these days for treatment. Radiation treatments, but he is nearly done with these. In fact, this has made the tumors on his chest and back shrink a lot. They will continue with the treatments on his pelvis and another one on his back though, because those are not shrinking as fast as the others. He should only have 10 more days of those daily treatments, and that is good those are almost finished because they really sap his energy.  

He is still taking steroids that are supposed to help him be strong enough to fight through all these health challenges. Those are helping, but they make his blood sugar zoom all over the place. Sky-high one day, way low the next day. I know that has been tough for him to get it regulated, and it makes his appetite lousy because he feels so sick most of the time. But he is being a real trouper, and fighting through these sick feelings.
He also gets a takes a Skele-Grow treatment each week. It is a bone-strengthening mix he gets via IV that makes us all laugh because it seems like the Harry Potter potion from Book 2.
He is also taking a thalidomide-based drug that helps stop the cancer from growing; it is a pre-cursor to the chemo treatments he will start once the radiation treatments are done. He always yells at me when I bring it to him with my arms hidden in my shirt with only my hands showing. “Joseph, that isn’t funny at all!” Sadly, that is a macabre example of why my sense of humor is unacceptable to civilized people everywhere. 

That is pretty much the whole set. Dad was feeling pretty good last week, even through all his struggles with the radiation, steroids, Skele-Grow, birth-defect causing agents, and physical therapy sessions. Then he had a new problem. He fell down late Wednesday evening, and if you have been following this blog, you know he has bone cancer, and it has caused holes all over his body in his bone mass. Well, he broke four ribs, so now he has even more body parts to cause him pain. It is especially lousy since he seemed to have a good handle on all the treatments he was getting. Sadly, it will be a few weeks before those start to knit up, so we will need to work even harder to keep him comfortable.

I stayed with Dad over the Labor Day weekend, and it was a lot of work. All you Browns owe your Utah sisters an enormous Obrigado, because they are working like rented mules keeping Dad going to all his appointments, cleaning his house, and helping him out. I was wiped out after I did it for a single weekend, and they have been at it for 6 weeks now. I will say it for everyone; 
Nice work, hermanas…
More news; Bart Smithson came up from AZ last week and like a tornado in reverse built Dad a bedroom and bathroom on the main house floor in one week. That means he won’t have to keep struggling with the stairs every day. We have a few more things to finish there (painting, carpet, etc.) and get a new bed delivered, but once that is done it will be much easier for Dad to relax there and heal. It was getting really tough to navigate that stairway to go visit the hospital and stuff.
So we Browns owe a huge Thank You to Bart for spending a week on that marvelous bathroom, and to Angela for being a single mom for all that time. It is all planned to be more accessible for him as he gets better. I will post a few more pictures when I get up there to paint again this weekend.
I don’t mean to make it sound like all tears and frowns up there, though. Dad still has his sense of humor about it all, even when things are really hurting. While I was downstairs in the kitchen, Dad was upstairs watching TV, and I heard a huge crash on the stairs. You can’t see the stairs from Dad’s kitchen, so I had a head-slapping “hot water burn baby” moment of “Holy crap, I killed Dad on the stairs” moment before I charge over to see what had happened. It was just Ethan, my 13 year old going down the stairs four-at-a-time. After I yelled my fear out on him, I went upstairs to see how he was, and told him what a fright I had. His response was “No, you don’t have to worry about me falling down those stairs. I got enough gymnastics when I dove onto the bedroom floor the other night.” 
We didn’t get much useful done last weekend, but we did have a chance to watch some good westerns together and talk about how no-one else in the family is quite as cool as he and I are. For those of you on the inside story of his back surgery, I teased John B that he left one of his bags on the floor in Dad’s room, and that caused the current problem as well.
Those are the good things; Dad has a good attitude, tons of kids to help out, loads of insurance, and he is getting the best care possible. His chances are very good that he will be able to improve, and he will feel better once this first set of treatments are complete. 

Thank you to everyone who reads this blog, and sends us messages of hope and comfort. We all appreciate the prayers, visits, assistance, meals, and concern expressed by all of us who love Phil Brown, and are trying to help him get better. We will try to keep the blog updated more often to try to keep you all from worrying. Thanks also go out to Dad's Ward and Stake there in Sandy as they are all helping with meals, visits, and encouragement. We all appreciate your help as we try to get Dad feeling better, and back to his normal healthy self. 

Joe B and all the Browns

Reuions, Reunions, All Over The Place

Here is one more post from Joe. 

In between being sick with cancer, Dad found time to attend three reunions in August. 

I can also report on the Whiting Reunion. Sadly, it wasn’t an  24x7 orgy of meth-fueled fun and excitement like the Phil Brown reunion, but it was a pretty dang good time. After a lot of driving, and a lot of caffeine, Joe, Buffy, and Jacque and kids drove down to the Homestead to enjoy the 2008 Whiting Reunion. It was great to see all those cousins, especially those whom we don’t get to see very often. Dad was especially glad to see all the crowd from his generation there; here are a few pictures of our trip there, and the great time we had.  

I need to state that Reunions in general, but especially the Homestead isn’t the same without my Uncle Brent there; there is a big hole in the entire event for me with that good man missing.

2008 Whiting Reunion - Whiting Homestead, Arizona

This is a picture of Dad with his Brown siblings at the 2008 Whiting Reunion. 

We continue to miss the following people from this picture - Grandma Elda Brown, Aunt Nathel, and most recently Uncle Brent. 
From left to right - Uncle Jack, Aunt Elma, Phil B, Aunt Geraldine, and Aunt Louine. 

At the Sunday service, Dad was supposed to preside over the meeting, but his health wasn't up to all that getting up and down out of his chair. Instead, he was asked to talk. 
Here is a picture of Dad talking at the meeting: 

Here is a short clip of his remarks at that meeting. 

Still from the Whiting Reunion -

This is my post, so you get to see pictures of my beautiful daughter Madeline. 

Here she is getting up-close-and-personal with a milk cow at the Homestead. 
Notice that cool CJ brand!

Here she is at the meeting while Grandpa Brown was talking. 

This is a picture of Dad with his good friend Dan Nowell. These two guys worked together in Phoenix for about 15 years. Dan lives in Pinetop, AZ, so we stopped by to see he and his wife Jan for lunch while we were in AZ. This is Dan, Phil, and the handsome devil on the right is Joe B.  Jan Nowell was nice enough to fix us a great lunch, and then take this picture. 

Porto Portugal Mission Reunion

Then, once we got back, Dad's missionaries had a reunion for him early in August because they were worried that his health wouldn't be good enough if they waited for the October reunion. 

I really want to thank the Elders and Sisters who organized this reunion. There were dozens who helped make it happen, but I especially want to thank Sis. Katrina (Liedke) Leavitt and Elder Brian Hulleberg. They really put this together, and it meant a lot to Pres. Brown.
Here is a short clip of Dad talking to his missionaries. I don't have enough memory to film his entire talk (it was looong) but look how many of these wonderful missionaries came out to see Pres.Brown when he was so sick. 

From Elder Hulleberg's email: 
We had a great showing of missionaries. We had 50+ missionaries and most of their families. It was truly a great event. Everyone was in great form and enjoyed catching up with each other. The missionaries that attended were: Rebecca (Johnson) Akita (Hawaiian), Jeremy Astle and wife Janet (Morrow), John Booth, Margie (Anderson) Boswell, Mike Bradshaw, Kyra (White) Brown, President Phillip Ray Brown, Ariel Bybee, Luis Camara Manuel & wife Angela (Fawson), Scott Chappell, Eurico Costa, Scott Davis, Shawn Durrant, Mark Egnew, Trent Fenton, Mike Hilbig, Jared Holt, Jeff Howes, Brian Hulleberg (Hully), Brandon Johnson, Ryan Johnson (Chinezinho), John Layton, Katrina (Liedke) Leavitt, Paul Martin & wife Laura (Dagley), Kristen (Russell) McQuivey, Michelle (Berry) Mills, Duke Montague, Joseph Murray, Rob Nash, Jeff Rudd, Matt Sager, Greg Spencer, Kim (Garrity) Springer, Doug Swensen, Steve VanWagenen, Mark Vosti, Sister West, Mike White, Ana Xarepe. AND I know there are a few others yet I forgot their name (SORRY – You would think I was 90 - HA). When you see the pictures you will know them.

Joe's note; some of the places this crowd assembled from were: Phoenix, Los Angeles, all over Utah and Idaho, Colorado, Seattle, and yes, Hawaii - thanks to you, Sis. (Hawaii) Johnson.

Phil Brown Sibling Reunion

Finally; the Phil Brown Sibling Reunion - dinner in Kamas, UT on our way up to the "cabin" in the mountains. I am not naming these people; stop reading now if you don't recognize them.

OK, I guess I will. L to R: Becky, John, Jacque, Lexi, Michelle, Nicole, Jeremy, Debbie, Tim, and Buffy. Joe is taking the picture, and Phil Brown is next to me out of frame. 

That is all for now.
We had a marvelous time at all these fantastic reunions.
It is great to be part of such a great family. It was a real sacrifice for some of them to get here from all over the country, but it was fantastic to get to see them all in one spot again.  

Way to go Browns - you know Antoinette is happy to see this mad mob all together again!

Brown Family Reunion - Aug. 5-8

Do you remember when I used to update this blog on a regular basis? Neither do I. It has been that long. So let me catch you up on our Phil Brown family reunion that we held in the beginning of August.

It was SO MUCH FUN. So much fun that we have all spent the last few weeks recuperating from fun overload.

Here are a few photos to show some of our activities:

Boat Race in the Provo River

Some are too little to handle the river's current

Oh wait. Phoenix is the exception. She's pretty tough.

The boats are off. We use the term boat loosely. It is a decorated piece of wood.

Our boat catchers/judges

Our winner, Hudson. Note the water bottle attached with some duct tape. Maybe he is more like Grandpa Brown than we thought.

And speaking of Grandpa Brown - what was he doing throughout the festivities?

As we can see, not much as changed. For ANYONE that knows Dad, you know there is no where else he would rather be. Reading.

Four broken ribs? A mere flesh wound!!!

Dad Update

I finally saw Dad. With my own two eyes. I saw him and his chest tumor (which is still visible, if it has shrunk 80%, it must have been huge).

This past week every member of the Phil Brown family gathered together. We had our own reunion of sorts. The purpose was two-fold. 1) Have a family picture. 2) Get all of the siblings away with Dad to go over matters of family business. It was the first time the siblings were alone in almost a decade (without kids and spouses). Buffy had a wonderful friend who let us use their beautiful cabin for 2 days.

We accomplished both nicely. It was so fun to see all of the family. It was a little bit harder to see Dad. Although he has improved somewhat because of the initial treatment, he is still in a great deal of pain. He has a nurse that checks on him weekly. When she asked him about his pain level - he said his chest and leg feel better but his back was still at about a 9. This is with him taking Oxycotin and Valium every 4 hours. WHAT?????

He is needing a lot more help everyday. It is hard for him to climb the stairs and he needs a walker or cane. Dad is grateful for the help but I think it is hard on him to physically deteriorate. If you think about it, he has been pretty independent for 72 years of his life - this would definitely be a change.

Sorry to end this post on a sad note. I will post some pictures of the family and events at our mini-reunion. And if you are lucky - you can see some pictures of our sibling retreat.

Grandpa and Arden

For any of you that know Dad, you know that one of his best buddies is Arden (Misha's little girl). If she had a choice to play with anyone, it would probably be her Grandpa Brown. Which makes sense because she sees him almost every day. They have a fun little bond that is so sweet to watch. Dad is actually a superb Grandpa to all of his grandkids, but the story between Arden and Dad is the focus here.

Here is a picture with Grandpa and Arden at her birthday party.

When Misha took Dad for his biopsy, Arden came with them. Misha took Dad to the receptionist who asked him, "What are you here for?" At this point, Arden felt like it was her duty to inform the receptionist what the problem was and declared loudly, "He has OWIES. He has CANCER."

The response from everyone was laughter. Could they get any cuter than that?

Hole-y Moley!

One of the drawbacks of multiple myeloma are bone lesions. What that means to non-medical folk (like us) is that the plasma cells are reproducing too quickly in the bone marrow causing lesions (or holes for non-medical people) to form. More correctly they are called lytic lesions.

When you find one lesion on the skeletal system, the cancer is called plasmacytoma. When you find multiple lesions in the bones - it is called multiple myeloma. When Buffy went to the doctor to discuss the bone scan, she asked how many lesions Dad had. The doctor said too many to count! WHAT???? Basically his bones are in bad shape and he is in risk of breaking them quite easily.

The holes in his bones are different from osteoporosis. Instead of a weakening of the whole bone, or losing density - his just has random holes throughout his body - femur, skull, back, arms, pelvic bone, etc. Okay so I understand why the doctor didn't bother to count. Buffy said that when the doctor showed her the scan it looked like someone had taken a hole punch to his skeleton.

Treatment options are going to work on a few things:
1) Use medication to build up his bone strength.
2) Use radiation to shrink the 2 largest tumors - chest and pelvic bone.
3) Use medication to keep new tumors from forming and manage the ones he already has.
4) Try to control the overgrowth of plasma cells in his bone marrow.

If he does not respond as well as hoped to the treatment options above, he will opt to have a bone marrow transplant.

All in all, we still feel grateful. The doctor said that if you were going to have a stage 4 cancer - this was a great cancer to have. It responds well to treatment and the treatment is usually not chemotherapy. Lucky Dad?

Doctor Update

Dad started taking steroids as the first step in his treatment for Multiple Myeloma. In the past 4 days it has reduced the tumor on his chest substantially. The area that is visible to the eye has been reduced by almost 80%!!!! Still visible but much smaller.

The most important thing about the reduction in size is that Dad's pain level has been reduced. He still has pain but not as intense.

The second thing that is the most important about Dad's tumor being reduced is that he can now attend the Whiting reunion. :) He is very excited.

Although we love the new medicine that has produced such fast results, there are some drawbacks. His blood sugar is now unpredictable and his diabetes cannot be managed with pills. He has started taking insulin last Friday.

Bone marrow biopsy was on Monday and tomorrow he will meet with the doctor. He will start taking steroids again in a week.

I am not sure what type of steroids Dad is currently taking. He couldn't recall and said he has had a hard time remembering things because of this medicine. He said that family and friends have called and he couldn't remember what type of cancer he had and what type of medicine he was on. While I was on the phone with him, he wrote it down to make sure he can tell them.

We are happy to see Dad's pain level reduced. We hope Dad will continue to respond well to treatment. We thank everyone for their prayers on Dad's behalf. We know they helped. Although we would prefer to not be in this situation, we are grateful that we have recently received positive news. By positive news - we mean as good as it can be with stage 4 cancer.

Here is a picture of Dad that I stole from Misha's blog. Not a great picture of Dad but he is wearing his new favorite accessory. Dad got a pin when he initially met his oncologist. You can't see it well but his small pin says "Cancer Sucks." Genius.

One in a Million

I was talking to a doctor and someone in his office mentioned cancer treatments. I told them that my Dad had recently been diagnosed with multiple myeloma and was starting treatment. I then told them that he had prostate cancer 8 years ago and now had an entirely different form of cancer.

Then I asked - what are the odds of getting a different cancer twice in a lifetime - not just prostate cancer returning? The doctor was not an oncologist but told me that it probably similar to the odds of getting struck by lightning - one in a million.

Well meet Mr. One in a Million.

Phil as a boy - before this cancer nonsense started

Should we have him buy a lottery ticket if he is that lucky?

Knowing is half the battle

I just borrowed a line from GI Joe. Now we know. The news from the doctor is promising. We need to do a few more tests next week but treatment started TODAY! (Lots and lots of pills).

I am going to post my brother Joe's email to the family earlier today:

Hey All,

I just got a text from Buffy; she is with Dad at the Doctor's office today.
Here is the deal from her.

Plasmacytoma multiple myloma
more later
Very treatable.
Radiation on big growths on chest and pelvis mixture of meds for small growths

That is some good news for us all!
I am stuck in the Seattle airport for the next 4 hours, so I have ample time to research this disease.
I may have a cure ready by the time my plane leaves.
I will highlight the positive news, because I think everyone is already very aware of the negative possibilities.
It is still a question of when and how long, but maybe not as soon as we have been saying.

According to this website, that is some really good news.
(Reallly Good News follows)
Phil Brown has a better than 50 percent chance of living more than 3 more years with this treatment.

See below for more details about how, and what is involved.

The correct spelling is:

Multiple Myeloma/Plasmacytoma

Multiple myeloma is the most common primary bone cancer. It accounts for 1 percent of all cancers. It occurs in about 4 out of every 100,000 people (lucky Dad!) in the United States each year. Multiple myeloma is responsible for the deaths of 10,000 Americans each year.

This disease generally occurs in older adults. Fewer than 3 percent of cases occur in people younger than 40 years of age. Multiple myeloma tends to be more common in men than women. It is twice as common in African Americans as it is in Caucasians.

Cause

Multiple myeloma occurs spontaneously (he has long been a spontaneous guy). Patients exposed to ionizing radiation and the pesticide dioxin may develop the disease (Tacna, St. Johns...).
Infection with some viruses (HIV and human herpes 8) (Any comment, Dad?) has also been associated with multiple myeloma. No known risk factors are inherited.

Symptoms

Patients usually complain of bone pain. Other symptoms include:

• Fatigue
• Feeling ill
• Fever
• Night sweats

Weight loss is not common in the early stages.

Physically, patients are pale with diffuse bone tenderness, especially around the sternum (breastbone) and pelvis (hips).

Pathologic fractures (fractures caused by tumors) occur frequently. Thirty percent of patients will have their multiple myeloma first discovered when they develop this kind of fracture. The spine is the most common location for a pathological fracture. It can also happen in the ribs and pelvis. Compression of the spinal cord occurs in 10 percent to 15 percent of patients. This causes pain in the back and legs and numbness and weakness in the legs.

Patients who have high levels of calcium in the blood may experience nausea, fatigue, confusion, constipation, and frequent urination.

Patients with anemia may experience fatigue, weakness, and shortness of breath with exercise.

In advanced cases, patients typically have recurrent infections and can have kidney failure. Multiple myeloma is not confined to a specific bone or location within a bone. It tends to involve the entire skeleton. When only one lesion is found it is called a plasmacytoma. Most doctors believe that plasmacytoma is simply an early, isolated form of multiple myeloma.

Multiple myeloma is currently not curable. Chemotherapy may prolong life expectancy and decrease symptoms.

Chemotherapy

The standard treatment medications are melphalan and prednisone. The median survival rate is three years with this treatment alone. For patients in whom this therapy is ineffective, alternatives include:

• VBMCP (vincristine, carmustine, melphalan, cyclophosphamide and prednisone)
• VAD (vincristine, adriamycin and dexamethasone)

These treatments may cause severe muscle weakness. They may also increase the chance of infections. Thalidomide and interferon are also sometimes used.

Radiation Therapy

Radiation therapy is reserved for decreasing the size of symptomatic bone lesions.

Fortunately, a recent advancement in the treatment of multiple myeloma has increased response rates and survival. This treatment consists of high-dose chemotherapy, followed by autologous stem cell transplantation. With this treatment, patients have a 20 percent chance of living longer than 10 years.
Dad may not be or probably isn't young or healthy enough to try something so radical, so I guess this one is out.

FYI, Median means that exactly half of the people live 3 years, so another way to state that is that Phil Brown has a better than 50 percent chance of living more than 3 more years with this treatment.
I rely on my more numerically oriented brothers and brothers-in-law to explain if there is more to a median value, but I think that is correct..

I am trying to learn how painful/sick this chemo treatment makes the patient; I will let you know what I find out.

Joe

**** If you want to know more - there is a great synopsis on wikipedia.

Thank you to everyone for all of your prayers - we know they helped!

Still Strong

The title is referring to Dad's sense of humor. Still going strong. His body is a little weaker but this was our conversation the other day:

Me: Dad - how are you feeling today?

Dad: Well the doctor is going to tell me if I will get better or if I will die. If I die and go up to heaven, I suppose that will be alright. But if I go down, I will be so busy talking to my friends that I don't think I will notice where I am!

***This joke was followed by about a full minute of him laughing at his cleverness. Okay, I chuckled too. You just have to admire his sense of humor.

When he stopped laughing, the jokes didn't stop.

Dad: Did you remember to get my black pants I left at your house? You forgot to send them up with Tim.

Me: I know, I will make sure you get them soon.

Dad: Well, I don't think I can wear them out now! I can hardly walk! (another pause for him to laugh at himself)

Because we can all need a little bit of laughter - her is another link to one of Dad's favorite stories. Complete with the sound of him laughing. (I think he has a laugh that is infectious. I always laugh when he does.) It is the story of Milo Wiltbanks. If you don't know, you need to listen:

The Milo Wiltbanks Story

PS- let me know if the link does not work.

The Reason Why

In the last few years there has been a driving force for me to remember more. Record my Dad's stories (often using a recorder and force). Write down details that are sometimes fuzzy and I often wonder why? Why have I felt so compelled to remember everything? The answer comes down to family.

My Mom was a driving force behind us enjoying our immediate and extended family in our daily lives. She set up parties, reunions and drove thousands of miles to make sure we played with family. When Dad was working to provide for us, Mom was working at building memories with our cousins, grandparents, aunts and uncles. Because of her efforts, I have a close relationship with my entire family.

My Dad? He always helped Mom but he provided us with a valuable gift. He gave us our heritage. He introduced us to family members we couldn't meet. Instead we became acquainted through his stories. Phil Brown is a story teller, much like his mother - Elda Whiting Brown.

Although Dad and Grandma Brown share a story-telling gene, I have been told that my Dad's temperament and personality is remarkably like his Father - Joseph Albert Brown. But I wouldn't know. I never had a chance to meet Grandpa Joseph Albert Brown. He died shortly after my parents were married. What I know of Grandpa Brown comes from the stories Dad has told me. But Grandpa Brown isn't the only one I know a great deal about. I know that I had a great great grandfather (Peter Isaacson) who left his family in Denmark to come to the U.S. to join the Saints. I know that my love of reading most likely came from my great great grandmother, Mary Elizabeth Cox, who read books while she walked. Strong people who sacrificed everything to ensure that their posterity knew the truth of the gospel. My great grandmother, Anna Maria Isaacson Whiting, wrote a letter to us, her posterity. I think her words say it best:

"I thank my Heavenly Father each day that you all belong to my posterity. My pleading prayer to the Lord is that you may never depart from the teachings of this gospel, and that you may continue this record through out all time." - Anna Maria Whiting, 1948

So here we are. Continuing our record. Our stories will differ from our ancestors but the end result will be the same. If we are faithful and true to the gospel, we are tied eternally to souls that have passed on before our time. Our ancestors who love us, know us and serve us through the veil.

My efforts to continue our record involves recording Dad's stories. Sometimes I write them down. Some stories have already been written. I have approximately 4 hours of Dad's recorded stories. I have a working document of stories that I would LIKE Dad to record. Why? Because I need to remember so I can teach my children. Help them recognize their past so they can shape their future.

So this is a question for my cousins. Are there any stories you would like to hear more about? Stories that are not written down but need to be? Please leave a comment with any Whiting, Brown, Berry, Isaacson, Cox, Clemmensen story you would like to have recorded. I know there are more families, I just can't remember all of their names. I don't have a Phil Brown memory. :)

Biopsy

Misha took Dad in for his biopsy this morning. And was there for 7 hours. We love you Misha!

They drew his blood twice (the first time was not supposed to happen) and he went in for another PET scan before they actually biopsied his tumor.

Unfortunately, Dad couldn't take his pain medication this morning (doctor's orders). I don't quite understand WHY, but he could hardly take a deep breath. He had to lie on his back for the PET scan, so he was in some excruciating pain by the end of the day. The medical staff somewhat redeemed themselves when they gave Dad a Valium so he could sleep after the testing.

** We realize that these are good people who are just doing their jobs but 7 hours does seem a little excessive, especially when you have a patient in excruciating pain.

It will be a few days before we know the results of the biopsy. We would know by Thursday but it is a holiday in Utah. Those darn pioneers and their celebrations! Just kidding.

So Friday is our day to know more. Just a few more days. Just a few more days. Just a few more days. We are going to keep on telling ourselves that. Until then, let's hope Dad's pain medication will get the job done.

"Twins"

Joseph Albert Brown and Robert Brown

This is Grandpa Brown (Joseph Albert) and his "twin" brother Robert. How are they twins? They were born a month apart. To the same father. Different mothers - who happened to be sisters. How does that happen? Well, it was back in the days of polygamy. Two sisters - Cynthia (Great Grandma Brown) and Thurza Berry married John William Brown.

They didn't live in the same house but their children were close. Often one family would sit down to dinner with a few cousins at the table and vice versa. And Robert and Joseph were close. In fact, Joseph Albert (Grandpa) looked more like Thurza's boys than his own whole brothers. One of Thurza's boys - Berry (sp?) looked so much like Grandpa that they were often confused as twins.

Once Elma (Phil's sister) was in SLC for General Conference with her family. Her daughter, Christine was lost and she was looking frantically for her. Eventually she found her Uncle Berry holding Christine. He had driven down from Idaho to attend conference and said that he was about to go in when a little girl walked up to him and said, "Grandpa!" He figured he had better wait. Christine was sitting on his lap, happy to be with her "Grandpa."

Dad remembers that one time there was a Brown family reunion when he was 18 years old. Someone said to Uncle Robert that they ,"couldn't tell who is your half-brother and who is your brother." According to Dad, Uncle Robert growled, "I don't have any half brothers, I only have brothers."

Ahhh, the joys of polygamy. Judging from Uncle Robert's reaction, I imagine that they had plenty of comments made throughout their lives about who is a "brother" and "half-brother." I think his answer was perfect.

07/21/08

Today's conversation was a little rough. Physically for Dad and emotionally for me. I called his cell phone and he answered in a series of short breaths and grunts. Turns out he has a hard time sleeping. Sleeping on his back is impossible with tumor on his sacrum and along his spine. Sleeping on his stomach is impossible because of the tumor on his chest and the tumor in his ribs. He can sleep on one side. But he is exhausted and moves in his sleep. And he slept on his bad side for part of the night.

The result? Intense pain when he gets up to face his day. Intense pain that makes it hard to take deep breaths. He was at Jeremy's house, trying to carry on a conversation with me and give candy to Jeremy's girls. He told me he thought he would be okay this morning but it was getting worse as the day went on. He came down to have lunch in Provo and true to his optimistic self, he thought the pain would get better. It didn't. He said it felt like "someone broke all of his ribs." And since Tim was the only other person in the house, I feel like we can blame him for Dad's rib pain. (Just kidding Tim - we are glad you are there!)

At this point, we cut the conversation short because it sounded painful for him to talk and he seemed to feel OBLIGATED to carry on a conversation with me! I also managed to get off the phone before Dad told a joke - who knows what kind of damage that would cause?

As an update - Dad is scheduled for a biopsy tomorrow - we will be one step closer to knowing what we are dealing with. Hopefully we can know by the end of the week.

Learning to Wait

I don't think I am out of place to say that the whole family is anxiously waiting. Waiting for results. Waiting to know what to do next. Tentatively planning family pictures and reunions - all dependent on what we find out in the next few weeks.

Each doctor is giving us a new piece of the puzzle. What Dad has, how to treat - these are answers we are getting slowly. We hope and want to have an overall picture to know where to start.

Until we know, there are 11 children waiting at the starting line. Waiting to start a race. Waiting to take time off for treatments. Waiting to schedule babysitters. Waiting to take care of Dad. (Well, we are already doing that).

So because we are waiting for more, I am going to post 11 things we are grateful for:

1) Dad - he is a good man, husband, father and grandfather

2) Family History - Dad has always told us so many stories about where we come from - it is our heritage.

3) Sense of humor - when I talk to Dad, I laugh. Hard. He finds the "funny" silver lining.

4) Family Conference Calls - How else to you make a decision with 11 kids? With 2 hour conference calls

5) Sisters - especially the ones who live close enough to care for Dad. Appointments, dinners, laundry, cleaning - they help with everything.

6) Brothers - They help too. A lot.

7) Attitude - Everyone is willing and ready to do what it takes.

8) Modern Medicine - We are lucky to live in a day where medicine has so many alternatives.

9) Eternal Perspective - Dad is still our good example. Helps us focus on the big picture of trials.

10) Reunions - Those Whitings knew what they were doing. We know our family. All of them.

11) Our Savior - last but not least - we are grateful for our Savior. Though him and through his Atonement, everything will be fine. Regardless of the outcome.

Wanted

Is this the face of a gang member? Maybe someone who is prone to stealing?



If you thought no, you were wrong. Dad went through a criminal phase as illustrated in this story I recorded.

Dad and The Chicken Stealing Gang

PS - this is my mom's favorite picture of my dad from his childhood. I love the freckles but I wish I could see his red hair.

Dad's Stories Continuted

This story is about the 4th Berry brother, William Berry. Again - if you know of any details to the story I have not recorded, please let me know.

William Berry

William Berry was called to serve a mission in Tennessee. They were at a member's house, about to start the service when a mob rushed the house and started shooting. William Berry pushed one of his companions out the door and saved his life. However, the mob shot and killed William Berry and one of his companions.

The president of the mission at the time was B.H. Roberts and J. Golden Kimball was his secretary. The mob published a challenge in the newspaper to B.H. Roberts to come forward and dig up the bodies of his missionaries. If he did, they would have a "necktie party" waiting for him.

B.H. Roberts decided he needed to dig up the bodies of those missionaries and J. Golden Kimball wanted to come. B.H. Roberts wouldn't let him come, he was easier to notice, being quite tall.

So B.H. Roberts decided to dress up like a hobo and dig up their bodies. He said that, "These boys are heroes and they deserve a hero's burial." He took a wagon and went to the cemetery in the middle of the night. He quietly dug up their bodies, put them in lead coffins and took them straight to the train station and sent them back to Salt Lake City.

Brigham Young spoke at their funeral saying that, "the Berry's have shed more blood for the church than any other family." (*does anyone know if that is true?)

William Berry's wife survived and was eventually buried by her brother in laws in Grafton, UT.

On a sidenote - Dad did tell me that B.H. Roberts has one of the most fascinating histories in church history.

Who knew Dad was photogenic?

Here is a picture from Dad's photo shoot with my sister in law Elizabeth, a very talented photographer. I love it! Thanks E!
PS - I think it looks like Dad just told one of his jokes and is laughing at himself - the perfect Phil shot.

07/16/08

Here is my conversation with Dad today:

Nikki: I heard we had some kind of good news today.
Dad: I know, but we still don't know anything. These girls up here had me already buried. I took them out to dinner tonight and said, "Before we started this all this cancer business and I used to pay for your dinner and you would say, thanks Dad. Now you look at me and think, you are spending our inheritance money."
Nikki: That is pretty messed up, but I respect you a LOT.
Dad: Well, maybe we will know more next week. Did I tell you the joke about the doctor?
Nikki: Tell away.

A man calls a doctor and said, "Doctor, doctor - there is a guy here who is really hurt and may be dead."
The doctor told the man, "Well make sure he is dead." The man puts down the phone and the doctor hears two loud gunshots. The man picks up the phone and says, "Okay, now what?"

Good News, It's Only Stage 4 Cancer?

Dad met with his oncologist today. They do not know what kind of cancer Dad has but they do know that it is Stage 4, but not terminal. They also said that he has a good sized tumor in his sacrum (pelvis) and that may be what is causing his legs to ache so badly.

They need to biopsy the chest tumor. That will help determine what type of cancer it is. They can't perform the biopsy until next week because Dad has to go off his blood thinners. When they have determined what type of cancer it is, we will actually know what our treatment options are.

IF (key word is IF) it is his prostate cancer coming back, it is a cancer mostly driven by hormones so they can use radiation and starve the body of hormones to treat the big tumor on his collarbone. If it is prostate cancer, it is also good news that it has been almost 8 years since his prostate cancer was discovered; that would qualify as a slow growing cancer.

Stage 4 means that it is still treatable; they are grouped Stage 1, 2, 3, 4, and Terminal. So he isn't ready for a marathon, but they do have some treatment options. Once there are no other treatment options, the cancer is terminal and out-of-control. We aren't at that stage yet, thankfully.

We have no idea what type of time frame we are looking at but that will be determined on the type of cancer, the treatment options and how Phil responds to treatment.

Surgery still isn't an option, that would be too hard on Phil.

Anyway, that is the latest...whew...
Not great, but some good news.

Here is Dad in front of his favorite place - Whataburger

07/16/08

It has been a long week from last Wednesday. I think one of the hardest parts is not knowing what we are dealing with. Today Dad is meeting with the oncologist. Hopefully we will have a few more answers from the tests Dad has already taken so we can know our treatment options.

07/15/08

I call Dad everyday. Our conversations haven't changed. He talks about volleyball and how Lexi is the world's greatest volleyball player. He also talks about how he meets people and makes connections. He met my sister-in-law Elizabeth this weekend for a little photo shoot and made about 3 connections during that time. She told me that there should be a game called, 7 Degrees of Separation to Phil Brown (not Kevin Bacon), which I think is the truest statement ever made. He also managed to tell a few of his jokes to help loosen up the atmosphere at his photo shoot. :)

Today our conversation went something like this:

Nikki: Hey Dad - how are you feeling today?
Dad: I am in a little bit of pain. My bones just hurt today.
Nikki: I'm sorry Dad.
Dad: This is what I signed up for. So I suppose I will just have to deal with it (his attitude seems to be consistent with his personality, very accepting).
Nikki: What are you doing today?
Dad: Gives me details about the day which somehow becomes a family history lesson involving Berry brothers and Brown brothers. (I wish I could follow, Dad actually makes connections faster than I can follow sometimes).
Nikki: Dad, wait, I can't follow you.
Dad: Well you had better start writing this down, I'm not going to be around for me to tell you.
Nikki: Duly noted. (as I get paper and a pen to start writing the family history). So tell me about the Berry brothers.

In honor of Dad's desire for us to know this story (and the 7 others he told me about), I am going to relay the story of the Berry Brothers - Robert and Joseph. And how Grandpa Joseph Albert Brown (Dad's father) got his name. The other stories will come later. With that being said, if there are any inconsistencies, this story is told to the best of Dad's recollection. Which is pretty dang good.

** Mandy remembered some facts - so they have been added. I confirmed it with Dad. If anyone knows of any details that have been left out, please let us know.

The Berry Brothers (with a few Brown family facts)

There were 4 Berry Brothers - John, Robert, Joseph and William. They were very close. At one time, Robert and Joseph went down to southeastern Utah to establish a community under the direction of Brigham Young. The community was called Berryville (now called Glendale). Robert and Joseph wanted to visit Spanish Fork where their brother John (our Great-Great Grandpa) was the mayor. So Joseph, Robert and Isabelle (Robert's pregnant wife) climbed into a buckboard wagon for a trip up north.

At this time, there were no established roads to Spanish Fork so the path was down towards Kanab to the desert in Arizona and up through Hurricane, UT to get to the main "road". They made it to Spanish Fork in safety but did not return home. When they failed to return home a search party was sent out and their bodies were found 1/2 mile from Colorado City. They were filled with arrows and it was presumed that they were attacked by the Ute Indians in the area. They had a dog with them that had survived. He was a loyal companion and they were not able to get the bodies of the Berry family because the dog was guarding them. They were finally able to lure the dog away from his masters by filling a hat with water because the dog was so thirsty. The place that they were discovered is called Berry Knoll, about 10 miles away is Pipe Springs Monument.

They took the bodies to the town Grafton (where they filmed Butch Cassidy and the Sundance Kid) and buried them there. Grafton is located right across the river from Rockville which is right at the entrance to Zion's National Park. I have included that part because Dad has taken me there and just in case anyone else wants to visit the Berry brother's monument. They were considered the first Mormon settlers killed by Indians in Arizona (Berry Knoll is technically in Arizona, right by the Utah border).

After the Berry brothers were killed, Brigham Young moved their settlement back to Kanarraville, right below Cedar City, UT.

We are descended from John Willliam Berry (0lder brother in Spanish Fork), who had 2 daughters - Cynthia and Thurza. Cynthia married John William Brown (the John William name was just a coincidence). Later, John William Brown married Cynthia's sister Thurza as well and they moved to St. Johns, AZ. They lived a few blocks away from each other and were very close. Dad (Phil) said that there is a story that is frequently told that indicated they had a bad relationship. But Dad said that was simply not true, he figured one story didn't define their relationship. They raised their children together. Cynthia had a daughter named Thurza and Thurza named her daughter Cynthia.

When Cynthia and Thurza had sons within a month of each other, they decided to name their sons after the Berry brothers that were killed by Ute Indians. Cynthia had Joseph Albert Brown (our grandfather) and Thurza had Robert. Grandpa Brown always maintained that Robert was his "twin" because they were born a month apart.

I hope this account was easy to follow :)

Nikki

07/14/08

We had a siblings conference call and were able to conduct it in less than 2 hours. We discussed a lot of matters of business, most importantly a Phil Brown reunion for siblings following the Whiting Reunion in Utah.
As a sidenote, I think that if anyone has first picks of Dad's pocketknife collection - I nominate Tim. He and Dad have a long complicated history involving watches and knives, as demonstrated by the stories below:

Tim and Dad


:) Nikki

07/13/08

Dad seems to be in good spirits. I called him yesterday on the home phone and he didn't answer. I was surprised to have him call me a few minutes later from his cell phone.

Dad: Did you call me?
Me: Yes, but you didn't answer
Dad: Well I don't move as fast as I used to. I used to run the 100 yard dash in 10 seconds and now I move 1 yard in 10 seconds.
Me: How do you feel?
Dad: "I'm fine, we shouted for joy for the ability to come down and live on earth."
Me: Did we shout for joy when we found out how we had to leave this earth?
Dad: "I don't think it mattered. We were just happy for the chance to come down and get bodies, regardless of the way we had to leave."

I am glad Dad can keep such a good perspective on things. In his words, he is moving a lot slower but he has a good attitude and is okay.

Here is another dose of Dad's jokes

Love you,

Nikki

Yesterday - 07/09/2008

Misha and Dad met with the surgeon yesterday and the news was discouraging. They don't think that surgery is possible because the growth on his chest is large and they are worried about his ability to recovery. In addition, he said that they found 7 other growths in addition to the ones on his chest. The surgeon said that the growths are malignant but they don't know much else.

We have an appointment next week with the oncologist and then we will know more about treatment options and what type of cancer we are dealing with. So hopefully we will have some answers about what our options are.

Dad Update From the Cardiologist

Buffy took Dad to the cardiologist today. They are going to do a stress test tomorrow to see if it is safe for his heart if he needs to have an operation but at this time they don't think surgery will happen, but just in case.

Laughter IS the best medicine

Last night, Joe and I talked about creating a blog that would allow us (Phil Brown children, and Phil himself) to post stories and updates. So following the news from today, I went ahead and started it. (Btw - this is Nikki)

Our news today was devastating. So let's focus on the positive. Dad is still alive. I talked to him on the phone and our conversation went something like this:

Nikki: Hi Dad, how are you? (I wasn't sure what to say to someone who just found out they have cancer - AGAIN)
Dad: I'm doing about the same as I was yesterday.
Nikki: What is that supposed to mean?
Dad: Well, I wasn't doing so well yesterday and I am not doing so well today. So about the same as yesterday.

Then Dad and I started laughing. Because that is such a Dad way to react to something. Not because it was funny but his whole attitude is. Maybe we should bank on laughter is the best medicine? Hmmm, we might have something there. In honor of a lifetime of jokes, I am attaching a sound bite I recorded of Dad:

Dad Joke - Streaker in the Tabernacle

Tcahu,

Nikki