Saturday, July 26, 2014

While You Were Sleeping

So, while we were up at Huntsman the first time for pain, we had a few things happen at home, while Tiffany slept for much of that time, people came out of the woodwork's and did some amazing things.

On Friday, July 11th, early in the am was when we went to the ER up at Huntsman.  That day she had scheduled a treatment early in the morning for the third round of a new treatment we were trying.  She was supposed to be gone for only a few hours, and many of her friends, knowing this, took advantage of that opportunity and decorated the house, allowing the kids to help and even using them as props (I don't have pics - I am at the hospital and the pics I need to post are at home - so maybe later).  In addition to the decorations, one friend had organized a 'card drop'.  She put a basket on the front steps to the house and as the day would continue, various friends would drop off birthday cards or what have you.  By the end of the day there were a ton of cards, sharing their love with Tiff and wishing her a good birthday and well wishes.  I knew what was being done, to some degree, but my concern was with Tiffany up at the ER, however, knowing of the degree of work that went into decorations, organizing, I was a little frustrated that we couldn't be home for Tiffany to enjoy it.  But would could I do.  However, there came a wonderful blessing from what they did.  While up in the hospital, I brought the many cards and pictures of what had been done and Tiff opened them one by one.  And one by one we put them up in her hospital room.  It was always a comfort to look up at the cards and pictures and know that she has such a wonderful support system at home.  So thank you!

 But that was not all.  Tiffany's sisters had this wild and crazy idea to do something for Tiffany that she has wanted for some time now.  Me, being not a great handy man, had known about her request for some time, but kept the request at bay for some time.  So, as wives do, they started into a project and somehow roped their husbands into doing it with them, as well as one of my cousins.

Tiffany has wanted wainscoting in our house for a while now.  Probably a request that has gone on for probably 4 years.  I guess her sisters got fed up with me in not doing it for her, they decided to do it themselves.

They had worked hard over a few days and upon our return home on Saturday, they had mostly completed the time consuming task of adding the wainscoting to the walls and painting the two toned paint throughout the main part of our home. 

One other thing, we have gained a friend recently in New Jersey.  We have never met, but she happened upon our blog one day and while her husband has been going through cancer treatments similar to Tiffany, there was an instant connection.  While Tiff was in the hospital, she put together some subway art for her.  I contacted a good friend who had a large printer, printed it large, and we placed it up in Tiff's room.  She loved having it up where she could see it and reminded her of the many blessings we have.

These kind of things are hard for me.  We didn't need the wainscoting.  Nor did we need the great birthday bash that was put on.  I don't like to burden others with these kind of things.  But therein I think I may be wrong.  It was something they wanted to do for us.  No, maybe we didn't need these things, but sometimes, through these trials, these tough trials, we need more than needs taken care of.  These kind acts of service do more than simply lift burdens... they give joy.  Driving up to our home, there is a joy that comes because of the many people who have weeded and planted flowers for us this year.  It just feels nice to see it.  The same goes when you walk into our home - it has a sense of peace and joy, in large measure because we know people have taken time and energy to do such a remarkable thing.  Going through card after card of birthday wishes gives joy to the burdened soul. 

That all said, we hope all know of our sincerity of gratitude that is in our hearts for the wonderful help and care and assistance through this trying time.  From these wonderful offerings of love, to the taking care of needs (like mowing the lawn and taking care of the dog), we will always remain indebted to so many.

Thank you.


Friday, July 25, 2014

Back in the Saddle, Again

'I do not like to repeat successes, I like to go on to other things.'
~Walt Disney

Yeah, me too, Mr. Disney, me too.

We came home Saturday, with pain meds and oxygen in tow.  A raving success.  We were happy to get her home as we tried to get back to some semblance of normalcy... though we truly know that will really come once we get the bone marrow transplant and recover from that.  But at least being home felt like a success despite the fatigue Tiffany continues to feel from the pain medication.

Come Sunday and Monday, more of the same.  I started to try to draw down some of the pain medication as Tiffany was having zero pain, and I was hoping to wake her up a bit from the medication induced haze she has been in.  But, per doctors orders, we were to only drop it slowly, so I was trying to do just that.  We had been running on a little bit lower doses until Tuesday when she complained in the afternoon about some pain in her knees.  Not bad, but just a twinge of pain.  Of course this was a little disheartening to me, I was actually hoping that some of the drugs she was taking actually caused the root of the pain to subside, and that the pain meds were simply masking that benefit.  But it would appear that the pain was still there.  Good to know, I guess, but disheartening still the same.  So later that evening, we upped some of the dosage a bit to gain a little better control of the pain.

Tiffany's mom came down to stay with us for a couple of days to help me out.  Dallin, having come home from scout camp on Saturday himself, was leaving on a flight off to Colorado to join his siblings having fun with their grandparents.  His first flight (since he was 6 months old, anyways) and that he was flying alone, I wanted to take him to the airport and see him off.  So Tiffany's mom came and stayed with Tiffany while I took him to the airport and she planned to stay a couple of days to help look after Tiff while I was working.  After dinner, we went out to Jensen Park in cooler weather and had Tiffany walk.  The weather was beautiful and the sunset was picture perfect.  With oxygen and a walker, Tiffany walked a little ways around some of the sidewalks and ended up sitting down on a bench and had a phone chat with the kids.

We came home, prepped for bed, and went to sleep.

About 30 minutes into sleep, Tiffany started to complain about her back.  She has a tumor in her sacrum, which is the lower spine, and we were pretty sure it was acting up - inflamed, growing, something.  The pain wouldn't go away with some additional pain pills, and by 1:00 am we were up to the ER.  This time we went to Davis Hospital, only about 10 minutes away.  Last time we went to the ER, it was a 40 minute drive, and that was 39 minutes too long.  So we opted to go to Davis to get the pain taken care of.

They gave her a shot of morphine, the pain subsided and after a short time we went home, about 3:30 am.  On the drive home, and really as we pulled into the driveway, the pain seemed to be coming back quickly.  But this time, it was not only in her back, but also in her legs. Walking back into the house was a chore.  Based on what the doctors gave her at the ER, we had something similar at home and gave her the pills to hope to help take the pain away.  Knowing pills take a bit to engage, we waited a good hour, and by that time, it seemed to not really do much to take the pain away.  By 5:30 - we had decided to go back to the ER.  This time, the shot they tried earlier didn't work and we tried something stronger, something they gave her last time she went through this, and it took the edge off.  We ended up contacting Dr. Glenn's team, and they had Dr. Glenn call to talk to the attending physician in the ER, and it was quickly decided to move Tiffany back to Huntsman.

So the Layton Fire Department showed up with their ambulance, strapped her into the gurney, and off to Huntsman we went, I followed close behind.

Rather than go into too much detail, the rest of that day was trying to get the pain under control, again.  It seemed the pain was a little bit more severe than it had been the week earlier, and the pain management techniques changed accordingly.

Here we are, Friday afternoon, two and a half days later, still here, still managing the pain, hoping for success.

But like Mr. Disney, we don't want to repeat this kind of success... we were hoping to move on to better things.  But alas, tis not so this time.  Maybe next time.



Saturday, July 19, 2014

Another Week Gone By

So we have been up here at Huntsman for now over a week.  If all goes well we should be coming home today (Saturday).  The docs have been working on her pain medication and moving it over to oral form so she can manage it at home.  There has also been a mystery of her oxygen intake, and they still aren't able to determine what is causing her oxygen levels to drop.  They have been watching her one extra night as she takes oral meds and ensure that she is doing good on both pain and managing the oxygen.

It has been a week full of frustration and faith. On one hand, she continues to be a mystery she has been for the last four years.  And, as it always seems - if there is a slight possibility of her getting a rare side effect, it just so happens she will get it.  For example, she has an odd twitch, but according to the pain docs - they say it isn't something to be worried about - as soon as she comes off the drugs they will go away, but the doc also noted that it is rare that only 1-2% of people have that side effect.  Things don't always add up but the doctors are doing a wonderful job with her.  In talking with one of the nurses who works with Dr. Glenn, the good doctor constantly has Tiffany on her mind and has called to other facilities nationwide to ensure she is not missing some treatment options or clinical trials that may work, but any option we seem to try, the cancer continues to come blasting back.  We have on many occasions been excited about the progress during any one of the specific treatment regimens she has been going through, only to have the cancer come back aggressively.  We continue to hope and pray that the current treatment will work.  And the one that they are giving her now is so far showing signs of goodness.  It is not a chemo drug - rather a bio-drug, one that the drug goes into the blood stream, finds a specific protein present on a lymphocyte cell (cancer cell) and attaches itself.  Once attached, that cell is then targeted by the immune system to be destroyed.  (I find that rather fascinating and wonder if I should have become a researcher instead of diving into the world of finance).

Throughout this week we we have continued treatment - on Tuesday, Thursday, as well as this morning.  We have hope that it will work.  We are grateful for for modern medicine.  Her platelets and blood was down this morning, so before we head home, she was getting another couple of units of blood and platelets.  That alone, as I think I have written before, is a miracle in its own right.  We sometimes pass it off as simply part of the process, especially having done so many of them now.  But it truly is a life saving procedure.  Somebody gave their life to save Tiffany's and to that, we see our hope

And so you see, as we continue down this journey, we find we are truly blessed with the multitude of blessings, and indeed, there seems not to be room enough to receive them.



Oh - and though we have been in the hospital for a week - the views out the window were fantastic.  We got to watch helicopters come and go all week long, which is always fun to watch, along with the Salt Lake Valley skyline. 

Wednesday, July 16, 2014

The Refiners Fire

“Here then is a great truth. In the pain, the agony, and the heroic endeavors of life, we pass through a refiners fire, and the insignificant and the unimportant in our lives can melt away like dross and make our faith bright, intact, and strong.”
~James E. Faust

It's as though things work out the way they are supposed.  At least when you take a step back and look from the 50 Thousand foot level and can see the many miracles and tender mercies that are happening all around you.

But why isn't that enough sometimes?  So often we see things only at the base level.  Only seeing what is right in front of us and often just the difficulties at that.  This last weekend was rough and hard to see how it all fits together for our good.  But we are starting to see it.  We think.


Friday, July 11th, 2:00 am.  Tiffany's Birthday.  She awoke with some major pain from her knee to her ankles.  She took some pain medication and went back to sleep.

Friday, July 11th, 3:30 am.  Tiffany's Birthday.  She awoke again, the pain continuing to build.  The pain medication not touching the pain.

Friday, July 11th, 4:00 am.  Tiffany's Birthday.  She woke me up to help her (up until this time I had been sleeping soundly, not aware of the concern within her).

Friday, July 11th, 4:02 am.  Tiffany's Birthday.  After awaking from my sleeping stupor, I came to, trying to understand what was causing so much pain in her legs.  Tried many things from massaging (which helped slightly for a while), to trying warm and cold packs on them.

Friday, July 11th, 4:45 am.  Tiffany's Birthday.  She took some additional pain medication, prayed, gave her a blessing and waited for it all to take effect.

Friday, July 11th, 5:15 am.  Tiffany's Birthday.  We called up to Huntsman to talk to the doctor on call.  He had her take some additional pain medication, which we did, which did not work.

Friday, July 11th, 5:45 am.  Tiffany's Birthday.  Pain medication was not kicking in, so it seemed, and as I kissed her on her forehead, it seemed warm, we took her temperature and found it at 101.5.  Called back up to Huntsman, talked to the same doctor on call, and let him know we had a fever.  He told us to go to the ER.

Friday, July 11th, 6:00 am.  Tiffany's Birthday.  We took off to the ER.  Tiffany opted to go straight to the University Hospital, though we did question if we should have gone to Davis instead.  Next time, we will go to Davis and once any pain is under control, get her ambulanced to Huntsman.  The 45 minute drive was made a bit quicker than normal, but the whole time she was in anguish and in such excruciating pain that made the drive seem like an eternity.

Friday, July 11th, 6:40 am.  Tiffany's Birthday.  We arrived at the ER, and with her fever (spiking at 102 when we arrived) and pain, got her back quickly to be checked out.

Friday, July 11th, 7:10 am.  Tiffany's Birthday.  Pain relief was finally on it's way in the form of additional drugs.  The pain would go away for about an hour, she would fall asleep during that time, and then the pain would come roaring back.  They would again give her the drug, take the pain away, she would fall asleep, then after an hour or so, the pain would wake her back up.  This happened for a few hours, all the while being interrupted for an EKG, Xray, blood tests and blood draws, urine samples, and on and on. 

Friday, July 11th, 10:30 am.  Tiffany's Birthday.  Having been in contact with her doctors up at Huntsman (just a building over), they decided to admit her into the hospital to wait on confirmation on blood tests (concerned over the fever) and to continue to manage the pain.

Friday, July 11th, 12:30 pm.  Tiffany's Birthday.  Finally, a room was ready up at the BMT (bone marrow transplant) floor in Huntsman and she was moved.

Friday, July 11th, 12:45 pm.  Tiffany's Birthday.  Arriving in Huntsman room 4546.  Pain came back and there seemed to be some miscommunication from the ER to the BMT, as the pain medication they started to give her at Huntsman was not working.  They continued to pump drugs into Tiffany, but the pain was not being managed as good as they were using a different kind of drug that seemed to have no effect.  We continued to call the nurses in trying to explain but it seemed to take longer than it should have to get the right drugs coming.

Friday, July 11th, 4:30 pm.  Tiffany's Birthday.  Finally they got the right drug, but the dosage they were giving was too low.  They would give her a boost from time to time, that would take the edge off for an hour or so, but pain management was taking a while to figure out.  The doctor on the floor promised the Acute Care team would be in to help evaluate the pain and how to control it.  They didn't come in until the next morning.  The rest of the night was mostly having pain, waiting for the nurses to come in, nurses having to go get orders from doctor to give a booster of the pain med, get the pain med, and repeat, every hour or two throughout the night.  I have to admit, it was frustrating.

Friday, July 11th, 9:00 pm.  Tiffany's Birthday.  Our Bishop had texted me earlier to see how things were going.  He asked if he and his wife could come up for the evening and visit.  Tiffany and I left in the morning without an overnight bag, so I agreed - if he would bring up the bag for us.  Tiffany's mom and grandma had come to our house earlier in the day to help pack kids up (more on that below), clean and put together an overnight bag for us.

So they came, but Tiff doesn't remember much of it, or really of the day itself.  The drugs had caused her to be very groggy and sleepy.  When she wasn't in pain, she was sleeping.  The bishop helped me give her a blessing, and we had a short discussion on spiritual things.  This whole journey has been very spiritual.  In some ways, much more than a physical journey.  There are so many things we have learned through these experiences.  We were grateful for their visit and we continue to hope and pray that good things are to come.

Saturday, July 12th, ~8:00 am.  The acute care doctor came in to talk about the pain management.  She set Tiff up on a better system and that seemed to be all the difference in the world.  She was still groggy, but the pain seemed to not come and go to the degree it had for the past 24 hours.

Saturday, July 12th, 9:30 am.  The doctors, making their rounds, came in and let us know that one of the cultures they did with her blood tests came back positive for a bacterial infection.  They had already started a series of antibiotics before the test came back positive, so we were already fighting it, but confirmation lead to understanding the fevers, or at least possible explanation.  However, the doctors cannot confirm if the pain in the legs are related to the infection, the treatment she started this week, or the cancer wreaking havoc. 

Saturday, July 12 10:00 am to Monday July 14th, 2:00 pm.  We go through a series of days with Tiffany having a bit of pain, getting enough medication to help her through it, fevers coming and going, with continued antibiotics combating the infection.  She can only walk with a lot of pain, generally not walking at this time.  She was on oxygen, mostly because she was on pain medication and when you are on pain medication, your breathing slows when you sleep.

Monday, July 14th, 2:30 pm - Doctor Glenn comes with about 8 others into the room (I know it is a learning hospital, but three or more people is a crowd, especially when they are giving you news on your health).  Dr. Nguyen, who works for Dr. Glenn, played 20 questions with Tiffany as the rest of the doctors looked on.  Ultimately, no new news.  However, above all other concerns they are wondering why when they talk to her, her blood oxygen levels dropped when they took away the oxygen mask.  No coughing, no wheezing, no gurgling in her lungs when they listened for it, causing a concern.  According to the docs, the oxygen levels should only drop when sleeping when on pain medication.  The fact that they were dropping while she was active seemed to be a new concern.  So a CT scan was ordered to see if anything was going on.

Tuesday, July 15th, 10:00 am.  CT scan came back negative on anything (good news) but they decided to do another CT scan with contrast to see if there were any blood clots.

Tuesday, July 15th, 4:00 pm.  CT scan with contrast came back negative (again, good news).  Tiffany continues her 4 year status as a mystery.  MRI was scheduled to check her legs out later in the day.  Meanwhile they decided they needed to continue with the chemo treatment.  As they were about to finish, Tiffany started getting chills and shivering and spiked another fever (she had a similar response last week on her first treatment).  They were going to wait for her to recover before they continued the treatment, likely later in the evening.

Tuesday, July 15th, 9:00 pm - Tiffany goes off to get her MRI done on her legs to see if they can find anything.  Docs are really thinking they won't find anything - but they don't want to miss anything.

And that brings us to now.  We won't know the results from the MRI until tomorrow sometime.  We were hoping only to be in the hospital for maybe 24 hours, perhaps 48, but we are going on to day 5 and not quite sure where we stand and when to expect her home.  We are grateful for her sister and her parents who have helped me stay with her.  My goal all along is to be sure that she is never alone.  And so far we have had no problem making that happen.  


Sorry for the book and perhaps TMI (so many people ask what is going on - there you have it).  But here is the kicker...

We sent our kids away to Colorado on Saturday to stay with my parents for a time (Dallin is off to scout camp for the week, then will fly out next week to meet up with his siblings).  When this was set up a couple of weeks ago, Tiffany wasn't sure she wanted her kids gone.  We want our family time to be special and close through this crazy stint of life, but she relented.  Knowing the kids were going to be gone, we took the opportunity on Thursday to take them out, have a weenie roast and make s'mores.  We then took the opportunity to walk around the Bountiful temple and sat the kids down.  Tiffany then took a moment to talk to them, to let them know what was going on with her treatments (remember, this was Thursday night - no pain at this time) and gave her testimony of the Savior.  It was a tender moment that we as a family will never forget.  And the timing couldn't have been any better as she never had another chance to see them when the pain started.  She is now glad that they are being taken care of and in a place they don't have to worry about what she is going through.

Things always work out.  We even believe what she is going through now will have a purpose, a purpose we don't yet know.  (Although, we are hoping that a miracle is under way where her body is purging the cancer.  We are hoping, anyways.)  The refiners fire creates amazing things.  During the hard moments, we don't see it, but the after effect has a powerful effect on how amazing things really can become.  Our views become so much more understanding and truly understand what is important and what is not.  I wouldn't wish the refiners fire on anybody, but at the same time, there seems to be no better way to grow and gain understanding.

That all said - I cannot tell you the love and support that continues to pour out from our family, friends, neighbors and church members.  We have been blessed by the goodness of so many that our burdens are made light. 

To which we will always be grateful.  Thank you.

Let's just hope tomorrow brings good news.  We need some.



Thursday, July 10, 2014

New Treatment

I am trying to write another post, but admittedly it is not coming together, and when it does, perhaps you will see why.  But I think I need to give an update concerning Tiffany, it has admittedly been a while.

Tiffany started a new treatment on Monday.  The last one we started in June didn't seem to what we were hoping and so the Doc has moved onto a new treatment.  This one will send her to Huntsman 4 days out of 5 and will end up giving her flu like symptoms, low blood counts, which in turn decreases her immunity. 

After the first three days of treatment the symptoms are showing up and causing her energy to drop.  We are crossing our fingers (actually, praying intently) that this will work and cause an opening for her to start the bone marrow transplant soon.  Hopefully we will find out how it is going next Thursday as we meet again with Dr. Glenn and see the results of this latest try to get the cancer to cooperate.

Prayers are welcome.  Perhaps even asked for.  We need one of these treatments to work.

More to come, but that is the update for Tiffany today.