Coming Home, We Hope

Thank you all for your many prayers. The white cells have begun to recover, but they have not changed. They are largely leukemia cells. The doctors here have no more help. Transplants require a very minimal percentage of leukemia cells. Thus, we are trying to get Brian back to Dixie Medical where he can receive life sustaining transfusions while he can survive. That isn't to say we have given up hope, but it is the next step in this journey. We hope that Brian will be able to see those he loves and has missed very soon.  He understands what is happening, and has not given up the fight nor the hope.  We pray for a miracle, not knowing of course the will of our Creator, who has not left us alone, but has comforted and guided us through this most challenging experience.

WANTED: White Blood Cell Recovery

It will be 3 weeks since the last chemo, and longer than that since Brian has had healthy white blood cells. Fungus has attacked his body, and while meds have gotten it under control, some traces still remain...in his lung.  That is what today's CT scan revealed. Ugly news. However, we are hopeful that the white blood cells will come back and put up a fight.  Earlier this week they were up to .6 for a day, but dropped clear down a couple days later to .1 . Today was .3, which is better. They say when the marrow wakes up there are fluctuations and then it takes off. Totally ready for take off.  Tonight he has to go in for another MRI, to check up on the tongue, throat and neck area to make sure nothing has grown there either. I hope there are no surprises reports from them, the lung report today was not expected and so not looking for any more disturbing news. Regardless, Brian is going to pull through this trial, and he is doing better today. He recovered this week from an allergic reaction which swelled up his tongue, then started swelling the cheeks, ran him fevers just about round the clock, and gave him a royal rash from head to toe, which still remains, but is fading as it should.  He has met his caloric intake the last 3 days now, and even though it is a liquid diet, just the fact that he has avoided TPN (IV nutrition) is a great accomplishment, which he did manage to do even when it drove him to tears for the pain. He didn't want to do the damage to his body that he had last time with the TPN, which took quite a while to recover from.  When you don't eat normally, the internal organs that usually are busy processing food and nutrients tend to die out, shrivel. He still takes extra pain meds prior to drinking his supplements but it isn't hurting to swallow as bad as it was, and he actually enjoyed a banana blended in his smoothie this morning. When he sees an ad for pizza on TV, he groans a little and says he wants to eat a whole pizza!  

He has recovered nicely from the lung surgery, also, by the way. That is good.

So, if we all can pray for those white cells to come back surely things will be looking up soon! Thanks for checking in and for your love and prayers.

Moving Out of the ICU Today

Brian has been making progress each day in the ICU.  Brian got the drain tube out from his surgery yesterday, and is doing well with breathing exercises.  He is sleeping a lot better lately, making up for a month of little sleep, and  bad sleep at that because the meds would give him nightmares again and again.  His tongue is swollen, and throat still very painful, but he manages to get liquid supplements down. Anything by mouth takes a major effort, but his mind is clear, and while he is sleepy from the meds, he "gets" it... and does what he has to do to get better.  Every day is a day closer to recovery.

This afternoon they are moving him back to the BMT unit, to a regular room. They said room 1124.  I think it has a south facing window ...more sun!

Surgery Report

Brian had his surgery this afternoon- evening.  It was about 4 hours from the time they took him in. Everything went well, I am relieved and happy to report. They were able to remove the infected lobe laparoscopically so that will make it a little easier  recovery-wise, though it will be painful. Brian went in positive and ready to get it done and move on.  Whatever his obstacles are, he is ready to take them on.  He has demonstrated the heart and soul of a champion. I am amazed by his inner strength in the face of so much adversity.

POSTPONED AGAIN!

One of the surgeons just came in...it's 5 p.m., surgery postponed again. They had such a busy day, it couldn't  be done until. 8 pm, and they felt like that would be too risky after a long day. I agree, and I just am thankful, still hoping that by divine intervention, this either won't have to happen, or at least not until everything is just right for it to go smoothly.

Horrocks Men 11/17/2013

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. :)

One Month Today

It has been one month today since Brian entered the hospital with relapsed AML. So glad that's behind us and Brian is feeling better. They are weaning him off of morphine and he is able to take pills by mouth, so that is also good.  Last night was a lot quieter without IV monitors beeping so often. Next challenge is getting regular food started again.  He has one major sore in the middle of his tongue that is still healing and something else in his throat that is still healing, but it is amazing to see the healing that has taken place.  His ANC (front line white cell defense) is coming up each day. Haven 't got the CBC results from this morning, but yesterday it was at 300. He is still pretty sleepy but should be less sleepy today with the decreasing medications.  Monday he is scheduled for a bone marrow aspirate which will determine the next phase of treatment. If the leukemia is in remission, with a low enough minimum residual, they will put him on track for transplant at the Huntsman Cancer Institute. If not, he gets another course of chemotherapy to try to get it in remission.  I hope it is the first option, but I am not looking forward to it. Time marches forward for us all. Ready or not, here it comes. God will be with us and with you. Thank you for your love and prayers!

Still Hanging In There...4 Days Later

The last few days have been similar; they have been tough.  About the time you think things are under control, things change.  Today the pain is staying under control with less morphine, and they upped the doses on the anti- nausea meds and he can sleep again, and better. Feeling constantly sick last night was like punishment, but since they fixed the meds this morning it is a much better situation.  He's sleeping without added oxygen, and sleeping hard. He is even looking better this evening.  Yesterday he had another CT scan and so far that and none of the additional precautionary tests that they have run have shown anything. That's so good. Although the counts are still down, the small points of progress make me think I might be seeing a little light at the end of the tunnel. 

Still Hanging In There

Some things can't be rushed, and it looks like recovering from chemo this time is one of those things. I am thankful for the progress however small, Brian is still heading in the right direction. He's on a morphine pump which makes him sleepy but also helps with the pain. A few more days and things should get better so I am told.  He got up and got a shower today, and tonight he braved it and swished his tender mouth with Biotene like the nurse wanted, to prevent infection. Thursday was the last time he put anything in his mouth...tried a bit of water and it stunned him. So this is progress! On a brighter note, we have a great view of the Salt Lake Valley and are hoping that by Thursday he will feel good enough to sit up and watch the fireworks. The 4th of July is Brian's favorite holiday next to Christmas. Just want to thank all of you for your love and prayers.

Making Progress

Even though the last few days have been hard on Brian, there also has been some very positive progress: less to no fevers, and better blood pressure and oxygen levels. The mucositis is severe and very painful. It is the worst. But even that is showing beginning signs of improvement. It has kept him awake night and day with only short naps for days, but tonight he is sleeping for longer periods of time.  Thursday night Coach Ed Lamb came and visited Brian and that was so nice. Fortunately, Brian was able to talk a bit and enjoyed the visit. Brian is looking forward to playing for SUU, sooner or later - he is planning on it! Had family come today and he couldn't enjoy them much, but I think he was glad to just have them here.

Still Working Hard

The last few days have been trying, but Brian is still working hard to win the fight.  Fortunately, things are under control and he is still in his regular room in the ICS.  The doctors, nurses and pharmacists have been working hard to keep Brian as well and comfortable as possible, although he still has pain, nausea and fevers. He has been a real trooper with mouth sores from the chemo rampant from his mouth down his throat, so sad. His doctor explained that the medicines they give him are battling whatever type of infection he has, but until the full army (white blood cells) arrive, the battle cannot be won- only keeping the germs from taking over.  So, we are waiting for those counts to return and then Brian can recover. Today was a better day. He stood up for a while, did some squats (exercise) by his bedside and stayed awake for a movie on TV.  A nurse told me that she has noticed that the patients who get the sickest tend to have a better cure.  So there is the bright side. And, one more day behind him.  Thanks for checking!

Another Hard Day Done

It is expected that after chemo, when the counts are low, there will be some hard days. Well, Brian just put one more of them behind him. This morning the doctors said he could leave the PICU, so after noon he got back to his regular room.  After a little rest, he wanted a hair cut, so I gave him a short cut with clippers they have here. His hair is starting to shed a lot. It makes him itchy and it's messy. He then took a long awaited shower, and cleaned up. He looked nice.

The challenge today was drinking  about 34 ounces of contrast mixed in Gatorade for a CT scan with a throat covered in mouth sores and juggling nausea and pain meds just right to be able to do it.  What he accomplished was no small deal.  Finally managed to get it down, and had the CT scan at around 9 o'clock. He keeps running a fever and the docs want to find out what the cause is, and none of their other tests have shown anything. Now he is resting and hopefully can have a decent night.  He is trying to text but falling asleep.  I am sure whoever it is will understand...I am happy he is finally getting some well deserved time-"out"!

Update from the PICU

PIICU: Pediatric Intensive Care Unit, commonly referrred to as "pic-u" here at Primary Children's Medical Center...  as opposed to NICU, "nic-u" (neonatal ICU ) and CICU "C-I-C-U" (cardiac ICU).  As you can tell by this knowledge, we've been here too long.  This was all new to me just 9 months ago!

So here we are in the PICU. Private room with ante room for airborn germ protection.  I heard all these bad things about this place last winter, but it must have been over crowded then, because aside from the beepers going off on numerous machines, and happy chatter amongst the staff, this is a very good place to be.  Nurse to patient ratio: 1:1, almost without exception.  Three tiers of doctors: Residents, Fellows and Attending physicians, all very attentive and smart.  Aside from everyone dashing out for the code blue in the surgical unit last night, things have been pretty calm around here. Those always get ya at least just a little.

So, the update you were wanting...is good.  Fever is keeping relatively low, the blood pressure medicine was stopped and Brian is keeping it up pretty well on his own.  Not as high as they would like though so he'll be another night here, just to be safe. Then back to his room in the ICS (Immuno Compromised Services unit).  I'm good with that.  The pain from his mouth sores down his throat is getting ever so slightly better, Brian thinks maybe partly on it's own and partly from the Oxycodone.  Maybe these are signs his counts are going to come up soon.  He's resting very well, and texting on his phone now and then.  I'm feeling relieved and blessed. Thanks for all the thoughtful prayers!

Tough Day

The effects of chemo are taking a toll on Brian today. I am hoping he can avoid the ICU tonight. If you can remember Brian again in your prayers, it would be much appreciated.  He's hanging in there, and spirits are good.

We Have A Donor Match!

Today we had a visit from Brian's transplant doctor, Dr. Pulsipher, who told us that Brian's sister, Charlotte, is a match for his bone marrow transplant.  We all wondered who it might be, but hoping and praying at least someone would be the match among the siblings. So we're thankful and that's one less concern. All his siblings were willing and were tested, and we love them all so much anyway and thank them so much. The next step is to get the counts back up (time) and get another bone marrow test to see if it is far enough in remission. Brian is in good spirits, has lost some weight, but it is not noticeable.Hopefully he will get his appetite back in a few days. Thanks for checking on Brian!

Good News

Yesterday we got the pathology report, and the leukemia is still AML. This means that the surviving cancer cells that have come back have not mutated during the previous chemotherapies. If it had, it would have been tougher to get rid of. The second thing we learned is that the current chemo is working very well. Whereas Monday's labs showed 67% cancer cells (blasts) in the white blood cells, today's labs showed only 7%, Last night was the 5th and final chemo for a while, and considering it targets the bone marrow first, and those percentages, the outlook is very good.  Brian still was not eating for the most part, but managed a little Boost and a few strawberries.  He was guarding the edge of nausea much of the day and night. Considering what he just went through, I think he did a super great job! He slept through the night as well as one can with all the interruptions, and maybe by tomorrow he'll dare to try eating a little more. Yesterday 4 football players from the Utah Blaze paid Brian a visit and that was nice. He enjoyed talking a little football with them. Randy and Dennis are heading up this morning, so that will be fun, too. Thanks for checking up on Brian!

Better Today

After enduring the first three days here mostly uncomfortable, with fevers and neck pain from surgery for the central line - but thankfully sleepy, today Brian is showing improvement by staying awake, watching TV, playing games on an ipad and even taking a little nourishment! Two more nights of chemo and done for a while.  We will know if one of his siblings is a match by Thursday, and we found out that our insurance will cover the transplant at the Huntsman Cancer Institute, but not here...same doctor either place.  Just glad we have insurance that covers this.

Thanks for checking on Brian. :)

One Day of Hospital / Night of Chemo Done

Brian entered the hospital yesterday for surgery to put in a new central line (easy access to bloodstream without turning him into a pincushion), bone marrow aspirate and LP( lumbar puncture) a spinal fluid test for cancer, more platelets,  etc., and into a room for the prep for transplant.  The chemo drugs went in one after another about all night, till 5 am.  At present, he is comfortable and sleeping and that is good.  The anesthesia gave him a headache, but it seems to be gone today.  I feel that he is in good hands here at Primary, and they know and care about Brian. We were here not long ago, just checked out in February. So that's this morning's report.  Not an easy afternoon nor night, but it could have been far worse. Now he sleeping hard zzzzzzzz...

Yesterday was Brian's 3 month mark.  He has done so well, it was wonderful, like he was his normal healthy happy self. However,  in the last week or two, things have been going a bit downhill, but we were hoping that it wasn't serious. He had an appointment Thursday (June 6) in Salt Lake with the doctors anyway, so  we were anxious to see what was up.  So, it is with sadness that I have to report to you that the Leukemia has returned.  While the white and red blood cell counts were still good,  the platelets were down to 11 (down from 70, 90 and 120 on previous monthly checks).  They gave him a transfusion and set an appointment to return inpatient on Monday, June 10, for the first chemotherapy in preparation for a bone marrow transplant.  This is the option.  His siblings (6 of them) will have blood samples sent to the hospital and evaluated to see if any match 10 of 10 things they match up.  Hopefully, we will find that for him.  This experience will take fewer months but be more intense.  It is well - scary. You have been a great support through all of this, and I hope you will unite with us again in your faith and prayers in Brian's behalf.  Thank you all.

Off and Going

Brian is feeling so much better these days. Went back to Salt Lake last week for the final bone marrow, spinal fluid and heart tests and visit with the doctors. Even stayed the night in SLC so he could get the central pick line removed (aka Broviac) from his chest, a quick surgery. He loves having that out, as much as it was a great blessing when he needed it for meds and fluids in and out, the freedom without it and being nearly back to his old self is pretty fun actually!
He has gone now with Dennis (brother) and Mike (buddy) to visit his grandpa in California, something he has dreamed about doing while laying in bed the last few months. They are enjoying spring on the ranch and being spoiled by two very spry octogenarians, Grandpa and Peg. While Brian still has to be on guard as far as germ protection, he doesn't ordinarily need to wear a mask, and is taking in the sunshine and fresh air. Toward the end of the week, they are headed to the coast to see if the ocean is still there. Good times. :)

Finally over the hill.  Today got the blood tests back and things are up!  So now there isn't the big worry about him catching something and getting super sick from it.  In a week or so, he should be back to normal.  Ooh, that's a nice sounding word!  He is very anxious to get on with his life, especially the "play" part... and we have a couple of trips to Salt Lake before we're done with most of this.  There will be blood tests for years but that's not a big deal.  Hopefully the tests results from this Thursday will be very positive. That's what we're hoping for.  They'll check for cancer and also heart damage (from the chemo - a possible side effect which I hope he never gets.)

Slowly Recovering

We knew that the final round of chemo was a heavy hitter, and we are seeing the proof of it. I am so thankful they don't do 7 rounds of chemo any more, because I think Brian would have been one of the statistics. The good news is that he's doing well, but it is a remarkably slower recovery compared to previous count recovery periods. He feels good, sometimes a bit light headed, but nothing serious . He is able to do a lot of things, but his ANC (frontline immune system defenses-nutriphil cells in the blood) is still at 200, no change in 3 days, unlike before when it was 800 by now, and the risk from infection was lower. His platelets are way low, also which at this point before were way higher, so he's getting a transfusion today to get those up...and decrease bleeding risks. He's been given lots of platelets before in the course of his treatments, but not this late in the game. So, for what it's worth, I'm going to be pushing his nutrition even harder in the next week or so. I am so thankful he is doing well and the treatments are over!

Still Improving

2 days later and Brian is still improving. So glad and thankful! No headaches or fever yesterday or today.

Doing A Little Better

Tonight Brian is doing a little better. Hooray! No headache all day and no headache tonight either, (as of 8 pm). He had a low fever this morning, and it doesn't seem to be spiking tonight! This is really big progress. There were some monocytes in the CBC report this morning and that is the first real sign that the counts are coming back up. Today marked 3 weeks in the hospital this round. He's not eating well yet, ( since he's been having headaches and fevers) but is eating a little and I expect that to improve soon. So, there's some good news tonight. I hope things continue in this direction, and that tonight is un-eventful, unlike the last couple nights, when he had some minor but unusual breathing issues and ended up needing a little oxygen to sleep comfortably. Probably won't be perfect yet, but should be better. He's been on his laptop for hours now, so that's another really good sign. Thanks for keeping tabs on Brian. We appreciate your love and support. :)

Endurance Test

There is this period of time between the relief from the last chemo and going home that has grown to be somewhat of an endurance test. When the counts hit bottom, it is good, because they have to go there before they can come up again. But - there is that space of an unknown quantity of time that increasingly with each chemo, becomes more of an issue, and that is what Brian is dealing with now. At the present, he is fighting fevers, headaches, mouth sores, etc., this is all part of what goes on and is to be expected. It is wonderful that they have medicines that modify if not resolve these temporarily...and then one day the counts come back, or at least to a minimum and the difficult times become history. I am thankful that this is all we have to complain about, and pray that Brian doesn't get sick from anything else while going through this. He is hanging in there, is alert and on top of his care and being a patient- patient. He is after all, ALMOST FINISHED!

Yippie Skippie

"Yippie Skippie"- that was the reaction of our nurse from Boston, when she got the second CBC back this morning. EVERYTHING is normal, right where it should be. The report was a freak, she said it happens once in a while. We are all relieved!

A Little Puzzled

The nurses are a little puzzled because the red blood cells are high this morning, so they have redone the CBC and are waiting to see if it is the same. Monday he got 2 units of blood. Tuesday's labs showed little improvement in the red blood cells in spite of that, yet today they are over the top. Yesterday he was given platelets, but today they are still low, as if there were no effect. This wouldn't be a big surprise if he had previously been given many more transfusions, but they say he hasn't had enough to cause that. Maybe tomorrow they will shoot up...? It makes Brian worry a bit, I am hopeful that it is just a temporary thing as the bone marrow works to bring things back to normal after the chemo . He has a low temp again today, his body is working hard.

Count Recovery Days

Sorry I haven't posted much lately. There hasn't been that much to write about. We knew these bottom count days were coming, and tried to prepare for them and hoped they'd go better than the last time. Annoying headache, mouth sores, sometimes requiring pain meds, but as he passes through these days the time is getting closer, whenever it will be, when he will get his counts back up and be able to go home. We are so thankful that this is the last round! Just praying that he keeps from all the illnesses that are going around. Don't want to go there. On the bright side, we've been talking about traveling this spring... Meanwhile time for a platelet transfusion. Sounds bad, but totally painless. They just hook him up and start it. So far, he has not had any problems with blood or platelet transfusions. I hope that continues to be the case.

One More Dose of Chemo. :)

Tomorrow morning is THE last day of chemo, one small dose and it's finished! Brian is doing well, and looking forward to getting back to regular life in a few weeks. One more count recovery to pass through. I hope he does well.

Getting Better Here

Thursday, after 2 really rough days of fever and nausea, Rick, our nurse, suggested another anti-nausea drug on Brian's list that Brian could have (in addition to the 3-4 he was already getting in rotation). So, we said why not? That was at 9 p.m., and at 11 his fever broke! Turns out the drug was also good for the fever. Since then, Brian has been so much better. Not eating a lot, but improving! Now we're putting all our efforts into preventing mouth sores. Today we had a surprise visit from Brian's brother, Matt, and also sister Charlotte this afternoon and expecting bro-in-law Trujillo tonight. He has had a great day! 3 chemo days to go! :)

2 Days Done

Tonight starts day 3 of chemo. This is going to be a real test. They are adding a second drug in, a new one for Brian. So far, it has been rough, but he's hanging in there. I hope the extra drug doesn't compound the situation. He's still strong, but not eating. Maybe tonight he'll go for a little chicken noodle soup. He finally felt like playing a PS3 game, so that is a good sign. February is just a week away, and he'll be finished with chemotherapy!!

Back to Finish Chemos

Yesterday we arrived back at the hospital for the 4th and final round of chemotherapy. Brian is healthy and we know the drill... And hopefully no unexpected problems or illnesses will occur. It is a little nerve wracking bringing home your son, immunocomprimised during the cold and flu (epidemic) season. We are thankful to all who stayed away when they might be contagious, and to those who understand this temporary situation. I think our whole family is much more aware of taking ALL the precautions to stay well and avoid illness. In that way it's been a blessing. Yeah, so I am paranoid ...hahaha.
This round of chemo lasts 8 days. Now, he has already one day done! Two major drugs, Cytarabine (Ara-C) and Mitoxantrone, plus the study drug, Bortezomib. The two major drugs overlap in the middle. The beautiful part of this is that this is the last round of chemo!
I think Brian is getting tired of it, but he's a pretty positive person and I hope he/we can keep his spirits up.

Doing Fine

Just a little post - Brian is finishing up round 3 this week and is feeling pretty good. It was a little harder on his body this time, but he's pulling out of it ahead of schedule so far, for which we are very thankful. One more round to go. It is scary with all the flu season going on, but we just have to be super careful...even up here in the hospital, in the ICS Unit, there are lots of sick (with flu) cancer kids. We had a good New Years and they treat us well up here. Thanks to all who have been praying for Brian, it's powerful. It's a pretty day here in Salt Lake. Brian is too sleepy for a photo, so here's the view from our room. Happy New Year to you all.