Tim & Charlotte

Surgery Postponed For A Day

Yesterday's surgery was postponed after waiting for six hours, which actually worked out better because Robert, Brian's oldest brother, just happened to have a layover at Denver Int'l. Airport, which also had problems with flights being cancelled, so he ended up having to spend the night in Denver, not 10 minutes away, so Brian and I got to visit with him late last night. Haha That's a long sentence. If he had had the surgery, he wouldn't have felt like much of a visit, so it worked out better.

So today, fortunately or unfortunately, is the surgery at 4 pm. Yeah, I'm dreading it. Thank you for all your prayers. This is a risky surgery, especially considering Brian's immune system, but the risk is worse they say to leave the infection. Hard to take. I feel like he'll be all right, but I'll be praying. I wish he didn't have to go through so much. He s willing to do whatever it takes to get well. Hoping for the best...will keep you posted.

On a happier note, we had Brian's brother, Tim and sister, Charlotte visit us last weekend. It was great having them and they were wonderful support. On Sunday morning, we had a surprise visit from the men of the Horrocks family- Ron & sons, and grandson, Carter. When I woke Brian up to tell him he had company, he saw Carter and smiled...so happy to see his little friend.  It was good to see them all and their smiling familiar faces!

Surgery Today

Today Brian must undergo surgery to remove an infection that is not going away with any of the medicines they've been pumping into him. We wished we could avoid it, but even though there are risks involved, it is a worse risk going another three weeks with this infection which could spread throughout his body if not stopped, keeping in mind that his immune system is down due to  chemo therapy and leukemia.They are removing the upper lobe of his right lung. We were hoping and praying to avoid this, but given all the risk, just have to go there. It is expected that the other two lobes will take over the space and he will live a normal life, maybe not do the marathon. They are also going to clean up the infection in his throat. Brian says it will be all right, and is keeping a good attitude. He'll be at least a night in the ICU.  It will be painful. Just gotta take this one day at a time,  I don't like writing bad news on the blog or sharing it period.  But I know you want to know, so I decided to post this. I hope to have a good report in a couple of days.

Time For A Good Laugh

Want to Share A Favorite Joke?

Brian could use a good laugh now and then. If you know a joke that Brian would like, could you post it on the blog?  Thanks. This should be fun.  

GOOD NEWS!

Brian's oncologist/hematologist, Dr. Smith, came in this morning around 7am thinking that Brian should not have the tongue/throat surgery, and we were on the same page having realized that the reason for much of the inflammation in his throat over the past month+ was the hydroxyurea, a low dose chemo drug that he was on to suppress white cells (mostly all cancerous),  We realized also that the times the swelling and pain in the throat subsided were when this medicine was cut back or temporarily stopped.  We had thought it was other things that may have caused the improvement, but late yesterday were able to put the pieces of the puzzle together.  Now they say he may not have to have the surgery at all, and that the fungus they thought it looked like following the biopsy a couple days ago may not be what it is exactly, though they are treating with anti-fungal drugs.  We feel a huge relief, all of your prayers and ours have been answered again!

Update on Brian

Brian is currently being treated at University of Colorado Hospital in Aurora, Colorado (Denver). After all we have tried, the dreaded transplant is the only reasonable choice left given his present condition.  The past month has been extremely hard on him, and we are lucky and blessed that he pulled through the infections he had,  one from his central line and the other a relapse of sorts from an infection he had in the hospital in July.  Having a suppressed immune system  finally caught up with him. He spent over a week in the ICU in Atlanta and been inpatient ever since, except for the transfer here. Yes, it is crazy.  But we fell into the hands of some outstanding doctors, and feel that Heavenly Father has opened our eyes, and opened doors, and we pray that  He will continue to bless and guide Brian through this experience.

Over the last month he has also developed a fungal infection in his throat or back of the tongue which will require surgery tomorrow morning. We thought it was the return of mucositis, but it isn't. It has been and will be rugged to go through, but it could have been worse. After the surgery, they will begin chemotherapy which hopefully will be effective in bringing the AML into remission.  It is expected that he will be a month in the hospital, have a break for a week or so, then return for the transplant, another month inpatient, and  if all goes well, have another 2 - 3 months receiving outpatient care here. Just pray that he can have all the strength he needs to fight the fight of his life.

     (He is in the white building,11th floor on the back, windows look to the north.)

    Brian up and decided to do some squats today, monitor wires tucked in and IV lines dangling.

I think it freaked the nurse a little when the heart rate shot up.

He misses everybody so much. We hear about so many of you still praying for Brian. Thank you so much for your continued prayers for Brian!!!  

He has a cousin, Johnny Graham, same age, who lives in the area who helped us when we arrived Monday night and has lifted Brian's spirits so much!  Here Brian has escaped the hospital bed and is relaxing while Johnny looks up a good movie to watch on Tuesday. The address for Brian is below the picture.

 Address:  (Updated 11/24/2013)

University of Colorado Hospital, 

Brian Scott, Room 1124

Anschutz inpatient Pavillion

12605 E. 16th Avenue

Aurora, CO 80045

                                                                 

PRAYERS NEEDED
To all you dear friends and acquaintances who have faithfully followed and prayed for Brian, thank you so much.  We have felt your love and support and are deeply grateful.
We have come to a critical point in Brian's battle, and the cancer is gaining fast.  We feel that we are doing the thing that will help him, but only time will tell the will of Heavenly Father.  Please pray for Brian.  Leukemia is such a sneaky disease.  You can't see it, people can look well but they're not. He feels happy, healthy and good about the cannabis and the path he is taking to get well. We support him, and feel that it should work.  Pray that it will, and soon.   Thank you so much!

                                       HAPPY 20th BIRTHDAY BRIAN!

              Last night we celebrated Brian's birthday with family and friends.  He had a good time, and blew the candles out in an instant, all twenty.

No News Is Good News

Since, the last post there hasn't been a lot to write about. It was a month day before yesterday since we arrived in Colorado Springs.  Brian has had very little change in the blood counts. Interestingly enough and thankfully, they have not seen any blasts (immature cancer cells) since we left Utah! It appears that the bone marrow is still feeling the effects of the multiple chemotherapies since October. It is now about 2 1/2 months since his last chemo treatment ended.  He has been on the cannabis for over 3 weeks now, and started at very low doses. It has been recommended that he have  2000 to 3000 mg per day, and he has reached 1000 mg per day so far, which is a fair dose.  He has little side effects from it, so he acts and thinks like normal. Initially, he was more sleepy and occasionally a bit silly but only when we would bump up the dose, and not always then either.  I am glad the body adjusts to it, so there is less side effect. His eyebrows and eyelashes are grown back and hair is growing in on his head once again!  :) He has been exercising moderately, but enough to get sore! He has a good attitude, and while he doesn't whine about it, wishes he could be home.  He is dreaming about going snowboarding this winter, which is looking like a good possibility.  He has had to get platelet transfusions twice, once 2 weeks ago and again with 2 units of blood last week.  So we've been a bit disappointed in the CBC's, but we trust a wise Heavenly Father who has a plan and we just do our part, and hope for the day when it gets better. Brian feels pretty good, has no pain issues, and keeps busy communicating with friends and family, playing a few video games and practicing his guitar. He has plans to study more and make better use of his time now that he is not so sleepy.  I will try to get him posting here in the near future also. Thanks to all of you for checking in, and for your continued prayers.  It means a lot.

Brian's sister, Charlotte, and her husband, Trujillo and four children drove out to see Brian

last week for a few days.  This was last night, kicking back for a few camera shots.  Brian needs a shave! :)

In Colorado

On Wednesday, July 31st, Brian and I (Jane, mom) flew out to Colorado to stay for a long time... Brian has established his residency and has a comfortable apartment. He is receiving treatment here for his leukemia in the form of cannabis oil.  It is legal here. This is something that we had been reading about since October on the internet, but never thought it would be do-able with laws the way they are in Utah...and other states. Plus, getting the correct type of oil and so forth all put together seemed far fetched.  The last round of chemo was so destructive, and even though he has a 10/10 match for a bone marrow transplant, the odds are basically 50/50 with AML, and if he was lucky enough to live, the quality of life is questionable...not like an organ transplant. Brian did not want to do the transplant and thought it would all but kill him if it didn't, and I felt like he wouldn't make it either. His dad didn't feel good about it either. The transplant doctor looked at him during the chemo in June and said, "You know, I can give you 5 times what you're getting now." A gut feeling inside Brian said "NO".  It wasn't long after we returned home that we were looking to go in a different direction for a cure. In making that decision, we met with a naturopathic healer named Sophia, who helped Brian and us to know that whatever decision he made, that he needed to be comfortable with all possible outcomes.  She was very knowledgeable in natural ways of healing, and helped Brian recuperate from nearly a month of rarely eating, with  2-3 weeks of IV feeding due to stage 4 mucositis, which left his mouth and esophagus so raw he couldn't even eat the first week he was home.  He could drink with a straw, so took a lot of Boost and Ensure, then discovered he could eat watermelon! Very carefully. Glad to say that is behind him, although his tongue is still not totally healed. His counts are still low as the bone marrow is still trying to recover from the killer round of chemo that ended two months ago.  When the blood counts come up, his tongue will heal quickly.

A very thoughtful friend had mentioned a month or so earlier that she knew of a man in La Verkin who had taken some herbs which cured his AML, Don Halterman. I knew him, so I called him up. 8 years ago he underwent 2 rounds of chemo in Salt  Lake and was sent home to die...now he's 72 years old and going strong. It's a great story...anyway, he told us where to get the herbs.  We also were told, and read about the importance of an alkaline diet. Cancer can't live in an alkaline environment.  So I had to make major diet changes for Brian...basically turned the kitchen upside down. I thought I cooked pretty healthy. So...for all my LDS friends, this is what confirmed my inspiration:

        I just happened to be reading in The Book of Mormon, 2nd Nephi chapter 32, especially verse 7. Then I thought about the Word of Wisdom, Doctrine & Covenants section 89. Why is it over the years we make excuses for not following what is plainly written here? Because, it isn't the way we were raised, or the American diet. When 2Nephi 32:7 reads "And now I, Nephi, cannot say more; the Spirit stoppeth mine utterance, and I am left to mourn because of the unbelief, and the wickedness, and the ignorance, and the stiffneckedness of men; for they will not search knowledge, nor understand great knowledge, when it is given unto them in plainness, even as plain as word can be."  When I pondered these things, I knew we were headed in the right direction.  Now I believe in taking the Word of Wisdom at face value. And yes, Brian can still be strong eating like a vegetarian much of the time. Elephants don't eat any meat, and they are the strongest animals on the planet, right?  Brian is still planning on playing football for SUU! He just won't be eating out of the cafeteria. (No offense intended.)

It seemed as though day after day for a couple of weeks or so, we would receive more knowledge on the subject, from one place, person or other and it was clear to us what we should do. Brian was craving fresh air, and slept outside under the stars on a hammock loaned from his buddy Mike, every night it wasn't raining. He even would sit outside in the shade on the hot muggy days. He drank lots of good ph water and ate super healthy, with supplements and all he could do.

Then one day a mom, Sierra, posted on the Facebook page, "Utah Moms with Cancer Cuties"- a page for moms with kids with cancer. Most of our children have spent considerable time at the ICS Unit at Primary Children's Medical Center in SLC. I read a post and watched a CNN video about her son, Landon, and how he was taking cannabis oil in Colorado and was doing so well. I contacted her, and Brian and I met with them. We had an amazing visit. As we were heading home, I asked Brian what he thought.  He said he thought he should do it, and I felt the same way. A window had been opened to a way to get the cannabis oil that previously we had thought extremely hard at best to figure out.  It would require relocating to Colorado. It would not be easy.  But it would be worth it. We made a stop at a store, and then my cell phone rang.  It was Dr. Luke Maese, one of Brian's oncologists from Primary Children's. He was the closest to Brian of all of them, a young man in his 30's, and had become a good friend. He had grave news. The cancer was already back. The labs from that day, Monday, August 29, showed 3% blasts. Blasts are immature leukemia cells. We thanked him for the report, and assured him that if there was anything he could do, we would let him know...NOT!  We already had told him we weren't going the transplant route, to which he replied to Brian in all sincerity "You're going to die!" Brian's reply, "No, I'm not!".  But back to that sobering phone call and the bad news... It just re-affirmed what we had just decided. We were going to Colorado. A quick text to Sierra, and more miracles began to happen.  It seemed that people started calling up the suppliers/growers that Sierra told us about from all over the world after the video came out. There was now a waiting list. A longer one.  But Sierra helped us.  They would begin that very week to make the oil for Brian. Less than 2 days later, we were in Colorado, checking into doctors, finding an apartment, and moving in...with our suitcases! We spent some very busy days qualifying Brian for a red card, or Medical Marijuana Card.  We expect to be here a minimum of 6 months.  The doctor who we met with that advises people with this has an MD  and Phd from Stanford University, and has degrees from other universities as well. She worked in pharmaceuticals for 4 years, then quit because she didn't feel it was right...now dedicated to what she believes will heal people.  She explained the science to us, which we already were familiar with, but about the two main chemicals in the oil, THC and CBD.  Both kill the cancer. You can study this on various websites.

The people who, along with our new friend, Sierra, are making this possible for us are non- profit MMJ supplier/growers who are growing the best plants in the world, so I've been told. They are called "Realm of Caring".  Amanda Stanley has been helping us, and making sure Brian gets what he needs.

Here is a link to their website. I think you will find it interesting.  http://realmofcaringfoundation.org/

They are on a mission, and very  intelligent, dedicated people.  They are saving lives!

Now this was a long story. As you know, I could never tell a long story short!  Brian is doing well, gradually upping his doses of the oil and that means he sleeps quite a bit, though he stays awake a good portion of the day as well. It can make him a little loopy, in fact he noticed himself being a bit slow this morning and found it quite amusing. :) ! But we have taken some lovely walks on the trails around here in Colorado Springs. It is a beautiful city.   

Last week Brian's brother, Matt drove out with Randy (dad) and flew back and now we don't need a rental car! They also brought some stuff we needed to set up the apartment, and helped us finish getting the major furnishings. So we are very comfortable here.  Our lives are changed, but we feel good about the path we are on, and so appreciate the support and prayers from our friends far away and our new friends near. Thank you.   And next time I won't wait so long to write. :)