Sunday, August 31, 2014

The Joy of the Transplant Journey

The word 'journey' expresses in it not only that you are going somewhere, but that there is a process to get there.  There is no better word, then, for what Tiffany is now going through. 

The transplant process is a long and difficult road, as we have been witness to from both near and far, and will become intimately aware of just how long and difficult soon. 


Four weeks ago - we were told that this was no longer on the table, that the cancer had taken too far a toll on our sweet and precious Tiffany.  So to be here writing today is a miracle that we will take as far as our Father in Heaven will allow it to go.

Time has been limited, so you will please forgive me for not writing more before now, as I know there are legions of individuals who want to know how she is doing.  So let me tell you...

She is smiling.

This past week has been another busy, crazy week.  How busy and crazy you ask (I know, you didn't really ask, but that is how I am leading into this crazy busy week story)?

From Saturday 8/23 to Monday 8/25, Tiffany continued to seem to lose energy.  She was just tired and when she wasn't sleeping she was becoming a little more lethargic in everything.  She was needing help anytime she would get out of her reclining chair.  Come Tuesday morning, she was doing her best to be mom while the kids were getting ready for school, all from the comforts of her bed.  Giving instruction to get dressed here, to make lunch there, and to stop any lollygagging that happens to I'm sure just our kids ;).  Porter couldn't find his shoes anywhere and we went on a man hunt, but to no avail.  The carpool ride had come and Porter didn't have his shoes.  We looked a bit longer but then waived the carpool onward and he and I continued to search.  All this while Tiffany was giving instruction from her bed where to search, hoping we could find them soon.

We found them.  In the van.  What kid leaves his shoes in the van?  Well - mine does.  To say the least we found them, got him packed into the van and ran him to school.  Second day of school and we already had a tardy.  Five minutes later I was home. 

Tiffany had an appointment down at Huntsman for labs later that morning and wanted to get a bath prior to heading down.  So helping her, she got in and out and she stood for a minute at the sink brushing her teeth and then I started to help her back to sit on the bed to finished getting dressed for the day.  Between the bathroom and the bed, she started to slump.  Luckily I was right there with her and was able to carefully sit her on the bed.  She laid back and then a most scary thing happened... she wouldn't respond.

Her eyes were wide open, as if looking out into the distance.  And for a few seconds, which seemed like minutes, she would not respond to me.  Her breathing become labored for a moment and all I could do was try to get her back, all the while saying a prayer within my heart that I could do just that.  For the next minute or two, again, what seemed like an hour, she would come in and out of consciousness.  I would be able to get her to respond and then she wouldn't.  Eventually I tried to see if she was awake enough to get her to the car.  My mind was racing, but I knew that her blood count had been dropping and was likely the issue, I needed to get her to the hospital to get some more blood pumped into her to get some oxygen, and other nutrients, to her body, specifically her brain.

As I tried to move her, she said "I can't" and that I needed to call for the ambulance.

I have never called 911 before.  And I have to admit, I don't know at what point I should have called them.  Hindsight being 20/20 - I probably should have called a bit sooner, but I feel blessed that in the end, all is well.

As the sirens were coming, Tiffany said to me "great, now the whole neighborhood is going to be worried."  It was that moment that I knew things were going to be OK.  Oh - we still had the problem at hand, but Tiffany had mostly come back enough where I felt like things were going to be OK.  The EMT's, police, fire fighters, sheriff all ran in did their things.  I think at one point we had 8 emergency personnel in our bedroom.  Her blood pressure was very low and they decided to take her to the ER at Davis Hospital.  Having to carry her out of the home fireman style (their stretcher wouldn't work because we have a corner they couldn't get the stretcher past if they laid it flat) and put her on the stretcher in the front of the home, put her in the ambulance, and were off to the ER.

After talking to a couple of neighbors who had come by to see what all the commotion was about, I too, went after her.

I will speed up the story from here, but she was stabilized in the ER, her blood counts way low, and in consultation with the doctors up and Huntsman we ended back at Huntsman to get some blood, talk to doctors and after a long day - headed home about 9:00pm.

We were slightly worried that this crazy incident would either delay the transplant or put the kibosh on it all together.  About 6pm, while getting platelets and blood, doctor Glenn came and talked to us.  She had been looking at the blood results, as well as the prior weeks bone marrow biopsy, and in consultation with the transplant team told us that there was no reason to delay the transplant, that the days' issue was caused by known issues and that it wouldn't appear any new developments that would push it back any. 

This was the thumbs up we were waiting for. 

We finished up getting the unit of blood and came home, with instructions to come back the next day for another unit of blood and to go through the radiation walk through.  A friend of hers took her down on Wednesday, allowing me to catch up on work items.

Then Thursday came.  We got up early, went in, and before you know it - she was in her first radiation treatment (I will describe the process in my next post). 

And so it has begun.  The miracles we have seen just this week are amazing, and we are looking forward, with hope, and even joy (you should have seen the smiles on our faces when we got final word on Wednesday afternoon when we got final sign off from insurance).  We are now at a place that there really is no turning around.  We made it.  And yes, it is a long and in many ways scary path.  But this journey is a process, and one we are so grateful to have made it to. 



We Believe

There can be miracles when you believe
Though hope is frail, it's hard to kill
Who knows what miracles you can achieve
When you believe, somehow you will
You will when you believe
~Whitney Houston

We are surrounded by the best people.  No, really, we are.  A couple of weeks ago, a friend of Tiffany's asked a few friends to put up a sign reading, 'We Believe in Miracles'.

What started as a few, turned into the whole neighborhood - and beyond.  At first it was a quiet thing, Tiffany nor I knew nothing about it.  But while driving to church one morning I started seeing them pop out.  At first, I wondered if it was for Tiffany or for somebody/something else, but that question was put to the side by a few individuals I talked to.  It was for Tiffany.  It was the neighborhood showing their support of Tiffany as she went into her bone marrow transplant.  I learned that part of the idea was so that the neighborhood could share with Tiffany what they were feeling as she went on her nightly walk.  The problem was, by the time these went up, Tiffany had weakened to a point that her walks that were meant to strengthen her, were no longer feasible.  So I went around the neighborhood and took a few pictures (*few* being the key word) to record for her what the neighborhood was now doing (because they never have stopped believing and hoping and helping).  It was heartwarming to say the least... when I came home and showed them to Tiffany, her eyes could not hold back the tears as they wielded large droplets in response to the love and concern shown.

There were signs everywhere - even in homes of people we don't know, or don't know very well.  That is the width and breadth of how amazing our neighborhood is.

I thought I would post a few of them for you.  Note that orange was the color of choice... Orange is the designated color for leukemia.

The end of that song by Whitney Houston goes like this...

They (miracles) don't always happen when you ask
And it's easy to give in to your fears
But when you're blinded by your pain
Can't see the way, get through the rain
A small but still, resilient voice
Says hope is very near.

We have hope, we have faith, and indeed, there is a still, small, resilient voice saying that hope is all around.



Thursday, August 21, 2014

Roller Coaster of Life: Part 2 - The Ride Continues

Life is like a Roller Coaster; You can either scream every time you hit a bump, or you can throw your hands up in the air and enjoy it!  ~Anonymous

Life is like a Roller Coaster.  If you don't get on, you can't experience the adventure.  ~Mariah Carey

Life is like a Roller Coaster.  Sometimes you close your eyes in sheer terror.  Other times, you just have to raise your hands up in the air and enjoy the ride!  ~ Unknown

Life, like a Roller Coaster, is never a dull ride. ~ Anonymous

Life is like a Roller Coaster;  It goes up and down, makes you scream, and costs a lot to ride.  ~ Hanna Cheatem - age 6

.... The Story Continues...

When we last left off, our superhero Tiffany had just powered through a day of lowest of lows to get back on an emotional high when all of a sudden, Thursday came...

Thursday - 8/14/14 - Tiffany's parents came down to take Tiffany to a day of fun at Huntsman.  What kind of fun, you ask?  Well - she went down to do the following:

Get a platelet transfusion that would bring her platelet count up to 50 so they could...
Do a Lumbar Puncture to check for possible cancer cells in the spinal fluid...
and then minor surgery where they were to take out her single port and replace it with a triple line, preparatory to start the transplant process.

After getting in and doing her first platelets - there was concern that it might take two or more units of platelets to get to her to the required count of 50 - the minimum to be able to do minor surgery.  After one unit, they tested her counts again and they came back - an astounding 70!  They haven't been that high for many months.  As the infusion floor erupted in applause, they got her ready to go to get her lumbar puncture (LP).  As she was at the hospital, and me working, I continued to get updates throughout the day - both from her parents, the nurses, and also Tiffany herself.  All were excited until I received a call a little while into the LP.  It was Debbie, Dr. Glenn's nurse.

In the excitement of the platelets, the other blood counts were missed, and she had a concerning number in her hemoglobin - about 5.7.  The night before she was at 8.8 and on Monday she was 9.1.  he had been dropping slowly for a few weeks now and we expected it to get around 7.5, the level they require a blood transfusion, sometime in the next week or so.  But it shouldn't have been a concern.  Debbie suggested that while the platelets seemed to come in quite higher than they expected with one unit of platelets, that the hemoglobin was suspiciously low.  How did she lose 3 points - about 2 units of blood - in about an 18 hour window?  There was no sign of bleeding anywhere, so Debbie was trying to get access to Tiffany to get another sample.  They eventually got it (there is a long story in that as well - they ended up having to do two additional lab tests - the first one was sent to the wrong lab and would take something like 3-4 hours to get the results back to the nurses - so they ended up doing a third one so they could get results back quicker). 

When that lab came back, it showed that her platelets were down to 51, a bit more of where we expected them to be after one unit of platelets, but her hemoglobin was still down to 5.7.  She has been low before, but there have only been a couple times she has ever gotten below a 6.  And really - she never should be - that is quite low counts.  Why the drop, we don't know.  We may never know.  There was nothing we can find that would explain it.  But the emotions and feelings of the last couple of days seemed to be evidence of low hemoglobin - so I will wonder if maybe the tests we did on Tuesday were wrong - but we may never know.

With the blood counts so low - they needed to get additional blood transfusions in her, but it was already 6:00 PM.  The infusion center had already closed, and the doctor ordered three units to be transfused into Tiff, which is about an 8 hour process.  So what do you do?  You get admitted to the hospital!  So upstairs she went and waited for a room.  Neither she nor her mother were prepared to stay the night - but stay the night they did.  Her dad ended up going home for the evening. 

Friday 8/15/14 - Friday came and Tiff was still getting the remaining part of her transfusions.  Oh, and here is the twist... at the end of her 8 hours of blood transfusions, they added on another unit of platelets.  Why, you ask?

Oh, that was because back the prior Friday, Tiff was asked by the transplant team to get final pass off from her OB/GYN and Dentist.  The OB was easy, they had seen her relatively recently and passed her off without much problem.  The dentist, who we saw on Wednesday (big roller coaster hill day - see part 1) had ended up talking with the doctors and they decided that with the issues at hand - they would do a root canal on the wisdom tooth.  So, thanks to a good Endodontist who got her in relatively quickly, we retrieved Tiffany from the hospital and with an hour to spare, got her to the Endodontist to do the root canal - and that was what the extra platelets were for - so that there wouldn't be a large risk of bleeding during the procedure. 

So, the end of the week came and the transplant was only a few days away.  We had had a crazy and somewhat rough week.  Each time we head up to Huntsman it ends up taking most of the day.  It isn't unusual to leave our home around 9-10am and get home around 5-6 in the evening.  We joke that we should just get jobs up there since we are there so much.

Saturday was mostly a restful day - trying to tie up a few items prior to transplant the next Wednesday, and prepping for Monday and Tuesday - more long days at the hospital in prep of the transplant. 

Sunday, after church, we took the family up to Tiffany's parents home and invited her siblings to join us in a family prayer and desert - Tiffany wanted to share with them the love she had for them and wanted them to know it prior to going in for this treatment. 

Monday 8/18/14 - Another busy day, a little bit tepid, but hopeful, that the tests today would help our cause to get to transplant.  Two weeks earlier Tiffany had a lung test, and it came back showing concerns, enough to allow the transplant to move forward, but if it had dropped any, the docs would have to change the severity of the treatment as her lungs wouldn't be able to handle the full dose they want to give her for the best fighting chance for this to work.  So up to Huntsman we went to get that done, get a CT scan of her chest, and then off to talk to Dr. Hildebrandt - the Transplant director.  He was going to be the one that gave the thumbs up or down to whether or not we would go forward with things.

Labs and tests done, we ended up talking with Dr. Hildebrandt - a big burly German - with German accent.  After a review of the CT scan and pulmonary test - which both seemed to show a positive improvement over the last ones a couple weeks before - he gave us the thumbs up!  Of course, that came with a caveat.  Tiffany has been experiencing some issues relating to her hearing and feeling like she is under water.  They weren't overly concerned, but they set up a hearing test and discussion with and ENT doctor for Tuesday, and set up an MRI on her brain later that night.  As long as it all came back negative - they would move forward on Wednesday with the transplant.

So we packed up and headed to the radiology department to get the MRI done.  Because we weren't emergency and we didn't have an appointment we had to wait till a machine opened up.  Let's just say we waited for a while.  In the meanwhile, as I went to get some Dinner for Tiffany - we got a call from the doctors office...

After we had left, the doctors started looking a little closer to Tiffs labs and saw that from Friday to Monday - her white count had dropped substantially.  Fearing that starting a transplant amidst a drop like that could be dangerous - they opted to postpone the transplant.  If she were to have an infection, or some other issue they weren't aware of, they could possibly do some damage.  So they called us up to let us know that they had just postponed the transplant to August 28th, pending the donor could do it then.

Auugghhh - after all that - everything was set.  I had schedules set up for help with the kids, to ensure Tiff had somebody with her all the time, work was set up with time off requested, etc, etc, etc.  And then to get that pulled.  Like the Wednesday before, it kind of sucks the wind out of your sails for a few minutes.  But eventually - you get back on board.  You want to say - 'hey, we need to get on this transplant - we don't have time to postpone', all the while you know that the doctors know the clinical side of this better than I do (though - c'mon - Tiffany and I have really gotten quite a crash course on all things cancer related).  They asked her to come back in the morning to do a bone marrow biopsy - yes, her favorite test in the world - as they wanted to confirm a few items before they moved forward with everything.

Tuesday - 8/19/14 - We left early to get up to Huntsman to do the bone marrow biopsy - which went alright.  Tiffany actually noted that maybe next time she won't get some of the drugs that takes the edge off, suggesting that she is getting so used to the pain - that she can handle it.  I am hoping she doesn't have to go through one again.  After slightly recovering from that (which really takes a week or two to really recover) we headed to the audiology department and she took an audio test.  Ha... they put her in a sound room and half way through the test, thanks to the drugs they gave her for the bone marrow biopsy - she started falling asleep!  So there is a part of the test that looks like she failed miserably.  But the doctors saw what happened.  With the results from the audio test and the MRI from the night before, we ended up talking to the ENT doctor, and found everything to be fine.  She suggested that the issues why Tiffany was feeling 'under water' was likely due to the large weight loss she has been experiencing the last few weeks.  On Monday - she was down to 102 pounds.  A bit frail physically, but mentally and spiritually - as strong as ever (today, at least).  The quick weight loss created some spacing between some openings between the throat and ears which created the issue.  It wasn't a common thing (but again, since when was Tiffany anything but common?) but hopefully when she can put some weight back on, and if that doesn't do it - she can either live with it - or possibly get some drugs to help it out.  We opted to wait for the weight to come back and hopefully help out - we figured she was already taking enough drugs - no need to add more.

After this - it was back to get more platelets.  Her platelets had dropped since the prior week - and needed more.  Again, another long day at Huntsman - too many lately.

Wednesday - 8/20/14 - a rest day.  The first day we haven't had to worry about too many things - oh - except a new drug the doctors wanted us to take.  We are also thankful for Walmart.  The pharmacist that called me up to tell me about the drug said that most places don't carry it because of how expensive it is and because of how seldom it is used, so we would likely have to run up to Huntsman.  Explaining we live 50 minutes away - one way - I asked if there was anywhere closer.  She suggested she would call and see if there was and would get back to me.  Ha - wouldn't you know it - our local Walmart had the drug!  Little blessed miracle.  It was so nice to jump in the car, pick up the prescription, and be home in a total of about 15 minutes.  Thanks, Walmart, for carrying expensive and seldom used drugs!

Thursday - 8/21/14 - Almost a full day of rest without the worry of doctors or nurses... almost.  We got called halfway through the day by the nurses and let us know that the doctor had ordered a special shot Tiffany needed to take each day.  It is a shot that she has had after chemo rounds to help give a spike to her white count and help keep the infection fighting cells active.  They ended up sending a weeks worth of doses to our home and just tonight, a home health nurse came in to show us how to administer it. 

OK - so here we are - mostly caught up.  I know there are things I missed - but that is our crazy - roller coaster of a couple of weeks. 

We continue to hope and pray - as I know many, many of you are doing as well, that we make it to transplant and have this shot.  So until next time... happy thrill seeking... and trust me - you don't want to ride the roller coaster we are on... go find a better one somewhere else!



Tuesday, August 19, 2014

Roller Coaster of Life: Part 1 - Enough Already

Roller coaster?  Oh, absolutely!  Ups and downs?  Yes, and yes.  But then there is the part of this roller coaster ride that you not only feel the ups and downs, it's where the bar locking you in is released, and you are holding on for dear life, not so much worrying about the ups and downs, but hoping, and praying, you can just stay in the seat.

Right now, we are in the seat.

There were times this week, however, that this didn't seem to be the case.

Back up a few days and let me share with you just a sliver of what this week was like with our sweet Tiffany.

Sunday 8/10/14 - Tiffany was doing mostly alright.  Her body has started becoming a little more frail, and if you haven't seen her in a while, it might be alarming.  She continues to lose weight, no matter what it seems like we are trying to do about it.  It's amazing how things work this way - I can't tell you how hard it is to lose weight when you want to - but when you are trying to keep it on - it sometimes seems just as difficult.  Well, we have been childless for almost a month now and Tiffany and I decided it was time to call the kids home.  And they were happy to oblige.  As much as you love extended family and love being with them - eventually it is nice to come home to your own home, your own bed, and be with your immediate family (having been home a week now - I think they are all ready to leave again, however). 

Tiffany had been sharing with me about some issues popping up, one of which she was feeling coming on for a few days prior to Sunday.  She had started to feel like every time she was sitting or standing up, she would be a little more out of breath and would feel like her ears would plug up.  She described it like she was under water.  Her energy seemed to be wearing out.

Monday 8/11/14 -Tiffany had an appointment back at Huntsman in the radiation department in order to be mapped.  They go through and set her up and make sure they know how to position her to ensure they get the radiation coverage on her and know how to position her.  Also, there were some labs that was needed - always more labs - though these were research labs.  The Friday before Tiffany had agreed to and signed off on her blood being entered into research prior to the transplant.  We are hoping that doing so pays off for somebody down the road.  Once the labs came back, it showed that her platelets were down again, which wasn't really a surprise, and they gave her a platelet transfusion at the end of the day. 

During the day, it was decided by the transplant team that one of her drugs she was taking orally (one that wards of fungal infections - a big concern when you don't have an immune system) would have an adverse impact to the transplant and so decided they needed to change it, however, the new drug could only be administered intravenously.  And since it had to be done every day, a home nurse was called in to teach me how to give it to her at home each night. 

The nurse was only paid for by insurance for the one night, but it didn't seem like a big deal at the time, to me.  I have seen the nurses at Huntsman access her port so many times over the last 6 months that for me to learn how to do it wasn't a big deal.  Now, you see - when somebody you know is working on tubes that go directly into your blood stream, there is a little bit of trepidation as they proceed.  I get it.  My older brother is a pilot, and for some reason, getting in the plane he is flying is shear fear.  Anybody else, and it wouldn't be so bad, but for some reason, the people we know, the people we love, are sometimes the last person we want to hold our lives in their hands.  As Tiffany said about me, "he has burned our dinner on more than one occasion'!

Well Tuesday evening came and time for the infusion was upon us.  Things started out well, she even congratulated me on starting it well.  Then, as time went on - bubbles started to appear in the tubing.  Air in the blood stream is bad - that is what we have learned.  What we didn't know that night - was that it takes a lot of air in the blood stream to be bad.  In any case, we started to work to get the bubbles out of the tubing.  It took a while.  And each second longer it took to get the bubbles out, the more our Tiffany got worried.  We eventually got them, but not without some worry and doubt if I could do the job.  It was the next day, in talking to nurses and doctors that put both of us at ease about the amount of air it would take to do any damage.  This was a big hill in the roller coaster. 

Wednesday 8/13/14 - Tiffany woke up and was having a hard time breathing, again, when she sat up or stood up.  Laying down she was fine.  The issue on hand this morning was that she had a dentist appointment.  Yes, dentist.  Prior to the transplant, she needed to get the sign off from the dentist that there wasn't going to be some issue that would pop up during transplant that would cause concern - like a cavity or a cavity that would abscess.  When this happens to your or I, it might be a bit painful, but not life threatening.  When this happens to an immuno-suppressed patient - which Tiffany will be, it becomes a threat to her life.  So we had an appointment set up to get the sign off from the dentist.  Tiffany had to lay down in the car on the way to the dentist, and then I would go in to check her in prior to getting her out of the car, and move her to the dentist chair to lay down.  Going into this appointment, we knew there was an issue with a wisdom tooth.  Six months ago we did this same thing as a workup to get the transplant approved.  At that time, Tiffany's wisdom tooth had a small cavity in it, and though not a big issue at the time, the dentist and Tiffany had decided to extract it, but would have to find an open window between treatments.  Well - there has been no window.  Sure enough, the dentist checked it out and the cavity was close to the nerve and needed it to be dealt with prior to transplant.  The dentist had two plans, and shared them with the transplant team.  Either extract it - or do a root canal.  The first would take care of it completely, but with Tiffany's platelet issues - we would need to go to an oral surgeon as they would be able to handle that issue a lot better.  A root canal would be less invasive and platelets wouldn't be as big of a concern, but the tooth would remain and wisdom teeth, I guess, are not the best candidates for root canals (going off of what the dentist had said, anyways).

We left the dentist, still waiting on the decision from the cancer team what they wanted us to do.  But on the way home, again with Tiffany having to lay down without feeling out of breath, she had had it.  The breathing problems and feeling of being under water had emotionally gotten to her.  Physically, she was feeling weaker each day.  The tooth seemed to be the straw that broke her back. 

She was done.  And admittedly - I could understand it.  From my viewpoint - she has tried hard each day to work towards this transplant, but each day it just seemed like things got harder and harder, weaker and weaker.  I stopped on the side of the road, all the while the roller coaster of life was plunging hard, and it seamed like we were no longer tied in, but holding with our might to hang on.  It almost seemed like our grip was loosening.  In the middle of this drive home, tears streaming down our faces, we had decided to go home, talk to the kids, call the doctor, and be ready for what may come next.

Having a tearful, yet wonderful conversation with the kids, I got on my knees with them and prayed for Tiffany.  We have done this soo many times over the years, but there was, again, a sense of urgency and desire from all four kids, from the oldest to the 6 year old.  One by one - they went to talk to mom.  There she expressed her love, admiration, and hope.  She never really told them she was done, but it no uncertain terms that things seemed pretty dicey.

And then off to Huntsman we went once again.  Getting labs, her platelet count had dropped again, which was unexpected.  Her hemoglobin hadn't done much, it had dropped about .4 since Monday - and although low for you and me, she was at a high enough place not to warrant a blood transfusion.  Her hemoglobin had been slowly dropping for a few weeks now, it had almost been just over two weeks since her last red blood transfusion and though it was slowly dropping - it seemed as though that was fine.  All her other counts seemed fine as well.  With her breathing problems, they did a chest X-ray, took her vitals.  Blood pressure and oxygen levels were fine.  Her lungs from the X-ray was just fine.

On paper - she was just fine.

But physically - she was not.  At one point in the conversation, she told Dr. Glenn, in what seemed in no uncertain terms, that she did not feel like she could do the transplant.  That even with everything on paper looking fine - she was not.

Tiffany has been a mystery since the beginning.  The doctor checked out her ears, throat, lungs, and everything else she could think of.  At this stage in the game, the patient is just as in charge of this transplant as the doctors are.  She does not have to go forward with it.  She could pull the plug at anytime if she believes it is in her best interest.  The transplant, clinically, is not a slam dunk.  There are very good reasons to consider not doing it.  Dr. Glenn was willing to listen to her, but in the end, we opted to do a couple of things.  Rather than pull the plug entirely, it was decided to simply postpone it.  Basically, if Tiffany was saying she needed to get stronger before she felt like she could do it - then we were going down two paths.  If she continued to get weaker, we would no longer do the transplant.  If she could get stronger - then it was back on the table.

After an already long and emotional draining day, we ended up leaving Huntsman around 6:00 pm.  The emotions in that time were crazy.  Tiffany and I had talked through many different scenarios.  Suffice it to say - there was peace in our hearts that our Heavenly Father was in charge, and things would end up the way they should.  The roller coaster was in a series of ups and downs all afternoon long.  Having called her parents earlier in the day and letting them in on what was going on, she opted to call them and talk to them on the way home and update them what was going on.

It was in this discussion that surprised me.  Emotionally, I was geared up to go down the path that she had decided.  Her parents, on the other hand, were not.  When she had talked to them - in essence they told her to hang on (and rightly so).  Before we were home, the decisions we made in the hospital were completely turned upside down.  Before long, she made the decision that this was her only chance.... that she had to move forward with this transplant!  I whole heatedly agreed - but the emotions that were being played with seemed to fling me out of the seat of the roller coaster, but this time, there was energy to hang on and move forward.  The next couple of days were going to be wild.  In fact, the next week was going to be more of the same.  But we were more determined, more committed, than we had been before. 

 (End of Part 1 - Part 2 to come shortly)



Friday, August 8, 2014

Consider the Lilies of the Field

If we had another child, and was born a she - her name would be Lily.

Some time ago, which really wasn't that far back (OK, maybe a few years), Tiffany had come across a song, a hymn, called 'Consider the Lilies' (go here to hear it), and in the midst of it, she suggested that she would call our next daughter Lily (and because I have a penchant for double L's in my kids names, it would have to be spelled Lilly - but I digress).

But in that hymn is a small, yet powerful message - that simple trust in God is all we need to survive, or perhaps, even, thrive!  That lilies don't worry or fret over their existence, nor should we.

But alas, we worry.  We fret.  Sometimes it is over the vain things this world has to offer, of money, of fame, of power.  And yes, even health.  But the message contained in the written word, and also in the lyrics of the hymn, are this...

He clothes the lilies of the field,
He feeds the lambs in His fold,
And He will heal those who trust Him,
And make their hearts as gold.
We forget, some more than others, and at times more than others, that the trust in our Father in Heaven is indeed what will take care of us.

If it weren't so late, and if I didn't promise my sweet wife I would post something tonight, I might be tempted to follow that thought some more, but for now, that will do.

Today, we had a visit to Dr. Glenn.  It ended up being the start of a transition to Dr. Boyer.  Dr. Glenn has done everything possible to rid Tiffany of the malignancy she continues to battle, and has done a marvelous job at it.  As there are no more treatment options on the table, we have been relying upon prayers and faith.  And as is any modern day miracle, we have seen something amazing over the last couple of weeks.  Tiffany has made some marketable improvements in her outward health.  And today, again, Dr. Glenn cannot really pinpoint exactly why there has been improvement, calling Tiffany a mystery.  But really, many of us know that mystery is simply the hand of providence.

So improvement came.  Tiffany and I have said all along that we need to follow competent medical advice and have faith.  At times we may have relied more on the medical advice than we have faith, but lately, it has indeed been the other way around.  With this improvement, a bone marrow biopsy was taken last Monday, and today, the results have come back, suggesting that there was just enough improvement to allow a bone marrow transplant!

And it is to be done quickly.

There are a few more tests and requirements that must be passed through, but since this morning, we have had the doctors and nurses scrambling to set up all the required tests to push forward with what seems to be an aggressive push to get the transplant started.

Many weeks ago, we knew there was a donor ready and the hope the doctors had with Tiffany, began to prep the donor.  As the window of opportunity is now open and the donor is just about ready, Dr. Boyer, our transplant doctor, came in with Dr. Glenn, and gave the go ahead to make it happen.

While there are some small hurdles that still need to be hopped over, Tiffany should be going into the Hospital on August 20th to start the conditioning.  This is the phase that will get her body and bone marrow prepped to receive the donors marrow.  This process will take about a week, the donor will donate on August 25 and 26 and Tiffany will then receive the donation on August 27th - informally known in the transplant world as a recipients new birthday, or alternative birthday.  She will then remain in the hospital long enough for the transplant to graft into her own bones and to start producing their own immune system - usually 4-5 weeks from transplant date.  At which point she will return home and continue to improve.  The first 100 days from transplant is a critical stage and while home will need to use all caution to ensure there are no complications.  After that 100 days, as long as things are stable, we will all be able to feel a bit of relief and move on to the next stage that takes her to 180 days, usually not quite as concerning, but need to use caution nonetheless.  As time moves on - we hope to get to two years without the sign of cancer and at that point we will celebrate that it has been eradicated from our Tiffany.

This is absolutely exciting news.  The roller coaster ride has been amazing over the last few weeks.  Going from no options and having only a few weeks to live, to improvement, and now a likely bone marrow transplant, shows us that indeed -  that 'He will heal those who trust Him, And make their hearts as gold.'

That it may continue to be so is our very fervent prayer.  And, to all those who have truly been praying for our Sweet Tiffany... Thank you.



Saturday, August 2, 2014

Mounting up onto the Wings of Eagles

But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.
~Isaiah - Chapter 40:31
We are never forsaken.  No never.  Don't ever let anybody let you think otherwise.  Because when times seem bleak or when you seem lost, there is always someone who will be there for you.  Always.

Having been at the hospital since Wednesday, July 23rd, this second round of pain control, things seemed pretty rough.  The pain Tiffany was having was being managed by pain meds, but if we got behind on the meds, the pain would come roaring back.  It was Friday evening, and Tiffany's parents had left a few hours previously.  They had stayed with her for a couple of days that allowed me to get some good sleep and get some work done.  But one can only stay away from ones loved one before they just want to go and be with them.  As the evening started to wear on, I had a surprise visit from Dr's Glenn and Nguyen, her most recent fellow.  Tiffany had been struggling with the pain off and on the last few hours and when she was 'awake' she wasn't really with it.  The drugs really produced a haze over her, and was unable to really understand what was going on.  It was at this time that we received the message that no one wants to hear; nor do the doctors ever want to give it...

The most recent treatment hadn't worked, like all previous treatments before it, and that there were no more options left.  The liver had grown 5 cm over the last week.  The CT scan had confirmed this and the doctors suggested the only reason was that the cancer was infiltrating it.  It was time to treat the pain, and wait.

No harder news, I am sure, hits you like it did to me then.  Up until this point, there was always something we were hoping for.  That if one treatment didn't work, we would go on to the next, and then the next, and the next.... never really thinking or believing, that eventually the options would run out.  But each time we tried a treatment, the cancer would come back, quickly, and aggressively.  It was killing off platelets and blood while creating tumors and pain.  But the next treatment would take care of it... we were sure of it.

But there is no next treatment.

Friday night was a lonely and painful night.  Tiff was in and out.  When she was in - her pain would flare up and she would push her pain button and within a couple of minutes - off to sleep she would go.  It was apparent, which was confirmed later the next day, that she did not recall the doctors visit.  After the evening wore on, holding on to her hand - I eventually called it a night.

Saturday morning came, and the doctors came in again, to see how things were going.  Tiff was having hard and labored breathing.  Her oxygen she had been wearing for the past week and a half had been upped from 2 liters of oxygen to 5.  The doctors took a look at her and we had discussed a few things that would help her feel better.  The doctor turned to me and asked if we should give her some steroids.  I know in the past that many of the treatments would be helped out by giving her some steroid that would help perk her up and make her feel better.  I said 'why not, it has always perked her up before".  She agreed and made plans to start her on a regiment of steroids.  As the doctor was about to leave, I needed to ask her a series of questions.  Mostly so I knew where to go from there.  Questions that I couldn't ask the night before.  Questions that when asked, seem to have some finality to them.  I didn't dare ask them the night before.  But a good night sleep gave me the strength to ask such questions as, What's next?  Where do we go from here?  How long do we have?  Is there no other way?

Answers came, but not what I was hoping for.  They talked about setting her up with hospice care, treating the pain, and allowing friends and family to come and visit with her.  Based on what they were seeing it could be as short as a week, but maybe up to a month.

Calling family and a few friends, we asked for prayers, faith, and fasting on her behalf.  There were no more treatment options to have hope in.  Now is the time to rely upon our Father in Heaven to produce a miracle, as I can rely no more on any treatment to take care of our Tiffany.

As Saturday progressed, Tiffany came out of her haze a little bit, and I had to explain what the doctors had told us.  It was an interesting conversation - one I hope no one has to ever do with their spouse.  It was a moment though that will be profoundly written in my mind, and one that as I spoke the words to her, it felt like I was taking a sacred part of her away.  But it also became a tender moment between the two of us.

I had called upon Tiffany's sister to come and sit with her for a while.  I had decided I needed to get to the temple to seek answers and peace.  While there, the overwhelming thoughts and feelings of peace came... that He was in charge, that everything would work out for our good.  A sweet reminder that the Lord is in charge.  That He will direct our paths.

When I came back, Tiffany was a little more awake - and the pain had subsided substantially.  The rest of the night was like that.  I almost didn't want to go to bed, scared that this awareness would wear off.  For, as I would remember, she was given some steroids earlier that day and that was perking her up.  Or so I thought.

Sunday came and the doctors, doing their rounds, came in again.  As they came in, Tiffany greeted them with a hearty smile and a sweet, "Good morning".

Doctor Glenn was astonished!  She said right back - 'Well - Good morning to you!'  Her face was just in shock.  It took a few seconds to finally understand her shock... The steroids she had given to Tiffany was more to control some inflammation, not so much to perk her up, though it would do that as well, though only slightly.  She said that there shouldn't be any way the steroids would perk her up that much and was dumbfounded at how she was responding.

Dr. Glenn pointed to our sign we had hung on our window -

And said - 'keep that poster up - it is working!'

No more was said about next steps other than to continue to take the steroids, and other pain medication and we would do a follow up later in the week.

Suffice it to say, we left that poster up (created by our new found friend in New Jersey who sent it to us - she makes these things as a side business but was kind to send this to me for free - go here to see her stuff).  It took Tiffany two more days to keep herself pain free, be able to get out of bed, and she came home on Tuesday evening.

There are continued prayers we put up.  We know of many, even hundreds of people that are doing the same thing.  And we feel the presence of those prayers.

On Thursday we went to see doctor Glenn - and she was pretty excited to see how Tiff was doing.  However, Tiffany continues to be a mixed bag of tricks.  Some of the labs from the blood continue to look good.  However, her liver still is enlarged and, at least until we can do a new MRI - there are still tumors in her spine.  The problem exists still that there are no more treatments... However - what she did put back on the table was a possibility of a bone marrow transplant!

There is no guarantee - but we will be going in on Monday to get another fun and exciting bone marrow biopsy.  Tiffany can't wait for those painful tests to happen.  If the marrow comes back 'clean' enough - they will continue to look at doing a liver biopsy and other tests and see if we can prep her for transplant.

Again - there if there is strong evidence of continued growth of the cancer this may all be for naught.  But we feel we have seen a miracle.  A week ago, I was in the depths of despair seeking peace.  Today, I have peace, hoping that darkness doesn't descend upon us.  And we continue to hope and pray for this continued miracle.

For any and all those who read this - pray for our beloved Tiffany.  That we may seek with all energy of heart that we might witness a miracle.

For - They that wait upon the Lord - shall renew their strength.  And Tiffany shall mount up with wings as eagles, that she will run and not be weary, and walk and not faint.

May God grant it unto us, is our prayer....