Zofran - the Wonder Drug!

This last round of chemo didn't go quite as well.  The first night of chemo, Jared was up sick the entire night!  And I mean SICK - he was running to the toilet about every 15 minutes the entire night.  I couldn't figure out why this time had made him so sick - the dosage hadn't changed, and he'd always tolerated the chemo pretty well.

The next day he figured out the problem - he forgot to take his Zofran!!  He has so many pills he takes at night, he forgot to throw in the Zofran!  (Zofran is the anti-nausea pill he takes 30 minutes before he takes his chemo.)  I don't think he'll ever make the same mistake again!

Lesson Learned:  Just how poisonous this chemo stuff really is, and just how strong Zofran really is!

Can't wait to be off this stuff - just three more rounds!  (Fingers crossed...)

Disneyland

Three years ago, we took a family trip to Disneyland during the fall break.  It was the perfect time of year to go, and we had so much fun that we decided to do it again the next year!  The annual October trip became one that my kids started looking forward to.  Last year, Jared just didn't have the time off of work to go.  My kids were really disappointed, but I was as well.  And I was a little mad that Jared hadn't managed his time off well enough to make it happen.  But it turned out to be a blessing.  The fall break last year happened to be the week that we found out about Jared's cancer. 

 

Family vacations are something I live for!  And there's nothing quite like watching kids at Disneyland.  When Brynlee knows we have a Disneyland trip planned, it's all she talks about for months!!!  And I know one day my kids will no longer enjoy the "magic" of Disneyland, so I feel like time is limited.

 

When Jared was in surgery getting his tumor removed, I wondered if we'd ever be able to enjoy any family vacations again.  So you can imagine how exciting this trip was for all of us! 

 

We stayed in Oceanside in some condos that were right on the beach with my sister's family and my mom.  When we weren't at the beach, we swam at the pool, played games in the large game-room facility, walked the pier and got ice cream in the diner on the pier, explored the marina (Drew has a huge fascination with boats, and we actually saw a walrus and some sea lions up close!), BBQed by the pool, stayed up late - it was so much fun!

 

And we did take a day at Disneyland.  It was a long, hard day for Jared, but he enjoyed himself.  By the end I could tell he was completely worn out.  We didn't stop much and he had done a LOT of walking!  He really wanted to go with the kids on the craziest rollercoaster at the Adventure park, but I didn't let him.  I knew he was a seizure risk and didn't want him to have a seizure and ruin the rest of the day for the kids.  (I think that's what finally made him stop - realizing that if he had a seizure, it would ruin the day.)  Maybe next time!  I think it took him a few days to recover from Disneyland, but I think he'd say it was all worth it!

 

I can describe the trip in two words - absolutely perfect!

 

Beach Fun

 

 Jace and cousin Mimi enjoying the waves, Averie playing in the sand

Cousin Ashley and Brynlee riding the waves

 

Jared playing ball with our nephew, Steven

The Pool

The Marina

Drew taking a peek at one of the
big fishing boats at the marina

Jared broke the rules of the marina and took Drew out
on one of the un-locked docks to see the boats up close.
They rounded a corner and got surprised by this walrus!

The Pier

 

Disneyland!! 

Brynlee is front row left,
Jace is middle row right

 

What is Real?

When our daughter Averie was born, she had a deformed ear. I asked the pediatrician about it and he said she had what's called a double-lobe, and basically when her ear was forming, the cells split and formed two lobes. It luckily didn't cause any hearing problems, it was all cosmetic. He told us that if it was a huge concern for us, it would be something that would require plastic surgery when she was old enough to perform the surgery. I spent hours analyzing that ear, wondering how a plastic surgeon could ever make her ear look "normal." There was cartilage where it shouldn't be, and lack of cartilage where it should be. And if they did repair it, there would most definitely be major scarring.

 

When Averie was about 3 months old, a remarkable thing happened. Her ear completely healed on it's own! I started noticing that it was looking better, but I thought at first it had to be my imagination. But within a couple weeks, it looked like a normal ear! The ear had repaired itself - it was a medical miracle!

Was there a reason we had this experience a few short months before Jared's diagnosis? Was this a reminder to us that medical miracles can, and do still occur?

I was told by a man on a cancer forum that I was delusional for being hopeful, and that I needed to seek help for myself. Statistics would certainly favor his argument. So should we just give up hope and accept that to be real?

Or is hope real?

My mom has a friend, Carol, who was told she had 2-3 months to live. And her cancer was spreading so rapidly that it didn't look good. Her hope led her to research different treatment options, and Carol is alive today, ten years after doctors had given her zero chance.

I choose to believe that our hope is real. We've had too many experiences to deny hope. And I could lie and say that I've never had my doubting moments, but in those moments something seems to always happen to shut down those doubts, and I hear the same words again and again... Where is your faith?

Jared was given a blessing prior to our knowledge of his cancer. That blessing had specific promises, promises that seemed impossible. I doubted those promises in those hours while Jared was in surgery having the tumor removed. I had known of four people with his cancer, and none of them lived past two years. So, in my mind, those promises couldn't be real. Then the doctor returned, completely perplexed that the tumor was encapsulated - something he'd never seen and couldn't explain. I knew at that moment I had to move forward with hope and never let myself return to that dark place.

In December, Jared got an infection, an infection we learned later had the benefit of triggering tumor-fighting cells in his brain.

In February, we were at my parents' house watching a movie about a grizzly bear. In the movie, the grizzly bear had mauled a man, but the man survived with serious injuries. For some reason the thought came to my head Maybe cancer is like this grizzly bear. You can be as hopeful as you want, but the truth is, you wouldn't stand a chance against something that big if you came face-to-face. The thought definitely depressed me. At the end of the movie, the grizzly bear escaped it's cage and was out free. It ran full force toward that same man, and I thought to myself This is it. He's going to prove my point. Then, the grizzly bear stopped right in front of the man, looked at him for a few seconds, and turned and ran in the other direction.

In July, we were told that Jared's tumor would be analyzed and tested as part of a study in hopes to advance treatments in brain cancer.

A couple weeks ago, Jared was out of town for work and I was watching one of our favorite shows alone. In the show, a lady was talking about the joys of becoming a grandma. It made me sad to think that Jared might not be able to ever experience those joys. After a few minutes of being really down, I decided that the Lord would know what I needed in that moment. So I decided to go to a website to read some scriptures. This was a website I had been to many times before, in fact almost daily. But this time there was something I'd never seen - a new video right on the home page. (And I might add that I've been to this website many times since and the video is no longer there. It was just this one time.) I decided to click on it, not knowing what to expect. It was a Bible story taken from the New Testament in Mark, Chapter 5.  It is a story of Christ going and healing a girl. Everyone around him mocked him because they thought she was dead, and they doubted he could do anything to help her. He touched her and she was immediately healed.

I believe hope to be real.

Anniversary

October 15th will forever mark the anniversary of Jared's diagnosis with cancer.  We will always remember this day as being the day our lives got turned upside-down.  So today, on the first anniversary, I wanted to focus on the positives.  I told Jared to make a list of ways his life has been changed for the better this past year, and I did the same.

 

Here's my list:

• My marriage is stronger than ever.
• My appreciation and admiration for Jared has grown immensely.  He has handled his trial like a champ!  I know it kills him not to be able to do things he could do a year ago, especially sports.  Sports were his life.  Yet he doesn't complain.  He works hard and tries to get better.
• My appreciation for those around my family has grown.  I'm always amazed at the generosity and kindness of others.
• I appreciate life more.  I try to enjoy "moments" with my family.
• I see more of a "bigger picture" in regards to my life.
• I have a greater dependence on the Lord and realize that my life is completely and totally in His hands.
• I appreciate little things more.  When I run up a flight of stairs and look back as Jared struggles to get up them, I am grateful and humbled.
• I focus more on things that matter, and care less about things that don't matter - I don't get as caught up in the "drama" of others' lives.  I realize the lack of importance.
• When Jared used to travel, I couldn't sleep at night.  I would get scared and had to start drugging myself to get a good night's sleep.  Now when he travels, I can sleep!!

And here's Jared's list:

• I feel closer to the Savior than ever before, save a few mission experiences.
• I try to live more for the moment, enjoying the journey.
• I feel a greater closeness and appreciation for my family
• I have really had to rely on my wife for physical, emotional, and spiritual support.  I have learned that she is very caring, hard-working, and truly loves me.  For this, I will always be grateful.
• I have learned that Heavenly Father loves me.
• I honestly feel more blessed than I have at any other point in my life.  I have been blessed a tremendous amount and I am glad to have recognized this.
• I realize that the Lord knows my wife and I intimately.  He has helped us several times when we felt a little down by presenting uplifting stories, videos, scriptures, talks, and other things to lift up our spirits.
• I've learned to watch what you ask for.  The Lord hears and answers prayers, and He knows what's best for us.

The Fighter

I love listening to music.  I always think of songs I want to download, but I never do it.  I always get distracted somehow.  Jared bought me an iTunes gift card, and after months had gone by, he started hounding me to use it!  So he was sitting with his phone ready for me to name songs to download.  The only song I could come up with at that moment was a song I had heard briefly a couple times that I liked, and I just knew it was called "The Fighter" by Gym Class Heroes.  He downloaded it for me, and that was the only song we downloaded because of more distractions.  So the next day I decided to listen to my new song, and for some reason I listened to the words this time, and I broke down.

"Give 'em hell, turn their heads,

Gonna live life til we're dead.

Give me scars, give me pain,

Then they'll say of me, say of me, say of me

There goes a fighter, there goes a fighter.

Here comes a fighter. 

That's what they'll say to me, say to me, say to me

This one's a fighter."

 

I couldn't have found a more fitting song if I tried.  I texted Jared the words.  He replied, "Thanks, sweetie.  I want someday for people to think that of me."

 

Jared, we already do.

Bogus Prognosis

Through this whole process, I've become more and more detached with the whole idea of giving a patient a prognosis.  Jared's mom, Linda, was immediately given a prognosis of 13 months by her doctor.  I've often wondered if the negative prognosis hexed her ability to fight her cancer.  Now I'm not saying she would've been cured, but she may have lived longer. 

 

I can't imagine that anybody would feel it's their place to give a time-limit on another's life.  Yet it happens all the time.  Is it possible for a doctor to deliver a serious diagnosis without being negative and doubtful?  ABSOLUTELY!  They can deliver the news in the form of a challenge, rather than a death sentence.

 

After the whole episode with the physical therapy doctor being doubtful, I was determined not to allow his oncologists to place limits.  And luckily they didn't.  If they had, we would've gone elsewhere.  I had already witnessed first-hand what happens in the mind of somebody internalizing negative predictions.  They take all of the negative, and they exaggerate it or hear words the doctor didn't actually say, because they're coming from a place of panic and fear.  And that's exactly what Jared did after the physical therapy doctor left the room.  I, on the other hand, could clearly see what this doctor was doing.  He was trying to "cover himself" by giving a worst-case scenario, yet this worst-case scenario could've been detrimental on Jared's ability to recover by placing a mind barrier!!!

 

I've heard so many different stories - one person told me about his mother who had had a stroke 10 years earlier, a doctor told her she'd never move her one side again, so she gave up and never even tried rehab!!!  She just accepted this one doctor's opinion as fact and gave up!  Another was a person who, when his cancer came back several years after the first occurrence, the doctor told him at that point there was nothing they could do.  He accepted it and passed away shortly after.  After his passing, the family discovered all sorts of new treatment options they were unaware of that were proving to be much more effective!  But because they had accepted his doctor's opinion as fact, they didn't do their research.

 

But I've also heard the flip-side.  To share just a couple... One guy was told he had 3 months tops, and he wasn't willing to accept that answer, He is now three years out with no sign of cancer.  He credits his diet change for saving his life.  Another was told she had 2-3 months, but she, too, didn't accept it and was determined to find a treatment to save her.  She's now 10 years out, cancer-free, from doing a clinical trial treatment.  And my boss from 8 years ago was diagnosed with a terminal cancer.  He was actually a medical examiner.  He didn't accept his prognosis either.  I think being in the medical profession he realized he had options.  So he did a clinical treatment in Arkansas, and is doing great today!  And his clinical treatment from 8 years ago is now the standard care for his type of cancer because it was proving to be so much more effective!

 

I read a book back in March about the power of the mind in battling serious illnesses.  The author of the book had overcome more than one terminal illness himself, and spent 10 years at UCLA studying the power of hope.  At the same time he would be asked by doctors there to "boost the spirits" of patients that had given up, and he'd personally watch the difference hope would bring.  And he saw amazing things.  One woman with breast cancer found that her tumor had shrunk in size!  Another man was getting his will in order because he'd been found to be HIV-positive (this was many years ago when that was considered a death sentence).  He had given up hope.  But after meeting with this author and having a different outlook, he found out a few months later he was no longer HIV-positive!  And nobody could explain it.  I share only two of the many, many stories this author had witnessed over the ten years at UCLA.

 

Although it's hard to clinically prove that hope enhances the immune system, it is indisputable that feelings such as fear, depression, anxiety, and panic shut down the immune system.

 

So how would giving a patient a time-limit ever be beneficial?  It creates an atmosphere where the immune system is compromised, making any treatment less effective!

 

I've heard many stories of people defying odds, and it seems like all of these people have a different "cure."  For one, it was their diet change, for another, a clinical treatment, for another, a homeopathic remedy, and for another, injections of some sort.  I've drawn my own personal conclusion.  I believe it has less to do with the actual treatment, and more to do with the fact that it gives a person hope, allowing the immune system to kick in and do what it's there to do!

 

A couple weeks after Jared's diagnosis, I was once again awake in the middle of the night with all of these thoughts stirring in my mind - mostly about the impact a doctor can have on a patient by being negative and doubtful, and the words Bogus Prognosis came to me.  I knew I had a new calling in life!  It was catchy, and it was a phrase that described exactly the message I wanted to share - a message that empowers a person to decide their own fate rather than allowing somebody else to place limits! 
 

Here's some stuff that I've created:
 

We don't deny the diagnosis, we try to defy the verdict!

 



Some of my favorites

 

Of all the current products, I think the "Little Motivator" kids shirt might be my favorite.  I've looked around to see what kinds of cancer awareness shirts are out there for kids, and it was really disappointing - particularly the messages.  The message of this shirt was inspired by both Jared and Linda.  My kids are definitely Jared's "little motivators."  I also think of Linda, and if one of my kids would've come to visit her wearing a "Little Motivator" shirt, I think it would've made her whole month!

The "Perfect" Head

Jared's not an insecure person.  I think he'd obviously prefer to have a full head of hair, but as he started balding, he always said that at least he had a nice "dome."  Well... it's definitely got a new shape, and in my opinion, adds character. :)

 

After the first surgery, the incision was massive, but it was healing up nicely and you didn't really notice the scar.  He actually had a soft spot on the top of his head for a while, but after a few weeks it started to harden and looked great.  The second (infection) surgery created the "character."  The incision scar was now much more prominent, and a few weeks after surgery, it once again started to harden, but it also started to sag.  We don't know why, our guess is that they placed the skull back in, but then as the infection started to settle and get smaller, it created the sagging.  It also makes it harder to shave his hair, because you can't quite get the razor to cut where his head is uneven.  We've joked about whether all of this would be harder on a person with a real nice head of hair, or a bald person.  Obviously a full head of hair would cover his "imperfect" head now, but it would've been harder to deal with the shaving for surgery and the loss of hair during radiation (he had two big crop circles in the back of his hair for about three months!).

 

I guess our new phrase is that at least he's tall!

 

March 2012

October 2012

 

 

The Kids

July 2011

I frequently get questions about the kids.  How are they doing?  Do they understand what is going on?  What are their thoughts?

 

Obviously, the two little kids don't get it.  But with all the uncertainties surrounding our lives, there are two things that are guaranteed - that Drew will be the one saying the dinner prayer, and that he will bless his daddy to feel better.  And it's never "daddy," it's always "my daddy."  Jared says at least he knows Drew cares about him! 

Jared has had much less to do with Averie than our other babies.  This is mostly because he hasn't been stable enough to really care for her.  He can't change diapers because he has a hard time kneeling, and until recently, he wasn't stable enough to carry her.  Now that she's a little more independent and he's more stable, he has more of a relationship with her.  And she definitely runs to her daddy with a big smile when he gets home from work! 

 

The older two definitely understand more, but I don't know how much.  They obviously know he has brain cancer, and they understand it a little more because their Grandma just died a few years ago from this cancer.  I think they were both really scared at first.  Now that life is settling down more I don't think they think much about it.

 

I was worried about Brynlee at first.  I would try to explain things to her and compare and contrast it with Grandma's cancer, but she would make comments like, "and then Grandma died."  So I definitely think there's a part of her even now that's scared.

Chillin' with Brynlee
July 2012

 



May 2012
If you look close, you'll notice Jared's
"fuller" face from the steroids.

Of all the kids, I think this has rocked Jace's little world.  Jace is definitely a "daddy's boy." Before all of this, the highlight of his day was playing one-on-one against his dad.  And they played pretty much every night.   One of Jace's very favorite things to do is to go to Utah Jazz games with his dad.  So I knew we needed to make that happen again.  Jared did finally take him to a couple games once he started feeling better.  We surprised Jace one day in May and got him out of school and drove him up to take a tour of the Jazz arena.  He even got to use the Jazz Players' bathroom!  So he thought he was pretty special knowing that he had peed in the same toilet as Gordon Hayward!  Jace hasn't said much, but occasionally he'll throw out a random comment like, "There's my cancer dad."  And they still aren't back to playing one-on-one, but that day will come.  They have recently started playing football together, which still isn't as physical as it was before.  Usually it's Jared telling Jace what play to run and then passing him the ball.  But Jace loves every minute of it! 

The kids are obviously the hardest part about this whole thing.  Whatever happens, we know we'll be okay, but we worry about the impact all of this will have on the kids.  Both Jared and I remember that, as kids, we worried about our parents and something happening to them  It makes me sad to think that for my kids, it's a real concern.

Darn Finances!

On October 14, 2011, I was driving home with my friend from lunch.  I clearly remember complaining to her about the expensive year we had already had, and I told her I was just ready for the year to be over so our luck would change!  If there's one thing I've learned, you don't ever complain about something, because it can always get worse!  Within a few hours of that conversation, my husband told me he had cancer.  And let me tell ya, cancer isn't cheap!!!

 

Jared and I have always made the commitment to make good financial decisions.  It hasn't always been fun, but we've never been overly stressed financially because of that commitment.  And we've tried to follow the counsel from our church leaders, who counsel us to pay tithing, or 10% of our income to the church (this money doesn't go to leaders, it goes to the building of temples or church houses, among other things), to avoid debt whenever possible, and to try to have a "comfortable" savings.  {And although talking about our finances makes me feel way too over-exposed, it is such a huge part of our story, and such a miracle, I feel I need to share it.}

 

Three months before Jared's diagnosis, we took a HUGE chunk of our savings and paid off our final car debt.  And as mentioned before, we had been having an expensive year - Jared had been hospitalized for pulmonary embolisms, Drew had hernia surgery, and we had a baby.  And on top of that, we had a our main water line outside of our house break, and to repair it we had to rip up part of our driveway, so that whole mess wasn't cheap, either.  But even with all of this, we still had a savings that we both felt comfortable with.

 

After Jared was diagnosed, we discussed our finances briefly in the hospital, and we still felt okay.  Luckily we had a maximum out-of-pocket that would certainly save us!  And his employer had told us they had a bank of leave that would cover him through the end of November, so that was a HUGE blessing!

 

A few days before Jared was released from the rehab center, a nurse started discussing Jared's medications with me.  They had already ordered a few.  She started going over the costs, and I started getting nervous.  Before this point, I hadn't even considered the costs of medication!!!  She told me that his blood-thinners (which is pretty much a life-long need considering he had already had pulmonary embolisms) were going to be $900/month.  (That was OUR portion, the actual cost was about $4500/month.)  I think it took me about five minutes to breathe again.  And I knew these were the minor medications - we had yet to find out what chemo would cost!

 

A couple days later we found out that we also had an out-of-pocket maximum on medications per year as well.  We knew we would meet it within a few months just being on the blood-thinners alone, so we were happy to have another cap!  So at this point, we knew the savings would be depleted, but we were still going to be okay.

 

The bills started piling in around the end of November.  That was when we got the next shock.  Our bill from the surgery and ICU was nearly $10,000.  (The hospital we were sent to was NOT a contracted member, so the insurance only paid 80% of the bill.  I knew at the time it wasn't a contracted hospital, but it was an emergency and the first hospital he went to was going to ambulance him over, we told them I would drive him.  It was so late at night and everything was so rushed, we didn't really have time to think - nor did we think we had a choice.  But this had been a concern in the back of my mind the entire time.)  I was sick to my stomach.  I figured at that point we were headed for financial ruin.

 

After investigation, I found out that the insurance only had us owing the hospital our out-of-pocket amount, so I tried to fight it.  But it was immediately clear that it was a fight between the insurance and hospital, and the one that loses in those cases is the patient.  The insurance was saying that due to the "special service agreement," the hospital had to honor the contracted amount, but the hospital told me this was something the insurance says all the time to get out of paying the full amount.  So it wasn't looking too good.  But the hospital said they'd run it back through.

 

Then we got a bill from pathology, and again, because they weren't a provider, our insurance didn't cover a dime.  And that was $1,200.  I knew we had no argument on this one.  Yet they never got my "okay" on where to send the tumor!  How did I know?

 

We also started getting bills for little dumb expenses that supposedly weren't covered.  Apparently, in our current insurance system, they expect you to sit along-side the doctor in every procedure, and before they use any instrument or perform any procedure, you need to call the insurance to make sure it's an "okay-ed" thing.  It's a joke!  So I guess we had an out-of-pocket maximum, if you want to call it that.  And we started having the same issue with our prescriptions.  We got excuses all the time, like if it wasn't an approved dose, they'd charge us.  So we were constantly out $50 here, $100 there even after we'd met the out-of-pocket max on prescriptions.  I could say I hate the whole insurance "game," but I don't want to imagine where we'd be without it!!!

 

After the infection, there were uncertainties of new medical bills.  We knew we shouldn't be paying for much, but there were always the unknowns of what was actually going to be covered and what wasn't.  We had the ambulance ride, the new surgery and hospital stay, radiation treatments, constant labs, a nurse coming to the house weekly for his care, a physical therapist coming, then blood clots, a new doctor, even more labs and tests!  But the biggest issue was that he wasn't able to work.  He had already missed pretty much the entire month of December, and when January came around, he just wasn't physically capable of working.  And we had more than exhausted his resources for leave.  At that point we didn't know when he'd be returning to work, so we knew we had to at least secure his job by filing FMLA.  Even if it was unpaid, it would at least hold his job and benefits (which were obviously essential). 

 

That was a pretty scary reality.  I don't care how much money someone has saved up, it goes real fast when you suddenly have no income on one side, and bills piling in on the other side.  I was already so overwhelmed with everything else, I couldn't allow myself to dwell on our finances.  I knew for certain it would cause a nervous breakdown.  And I knew Jared was concerned about it, but it wasn't something I wanted him to worry about.  He needed to focus on getting better!

 

This was the point where I truly thought we were done.  I remember thinking Here we've tried so hard for all these years to be "smart" and follow the counsel of our religious leaders, and now we're done.  I just didn't see how it could possibly work out.  But every time I got really overwhelmed about the finances, I just knew for some reason it would work out.  It had to.  I knew the Lord wouldn't let us down when we'd tried so hard to do everything right.

 

That was about the point that we started seeing little miracles.  I received a new bill from the hospital, this time for the adjusted amount.  (Now I must explain that I had received another bill in December AFTER trying to fight it, after they had re-processed it, and it was still $10,000.  So at that point I thought it was a lost cause.  For some reason they decided to adjust it.)  We called and talked to the pathology lab and explained the situation, and they adjusted our bill to $110!  I guess they just ate the $1,090 they didn't get paid.  Then, through February I looked at our bank statement (something I didn't ever do because I didn't want to know!)  and I noticed that we had continually received a paycheck.  And I didn't understand why.  I asked Jared if he knew what was going on and he didn't know.  He found out that his co-workers had been donating so much time that it was covering the months he'd been missing.  Over the period of FOUR MONTHS without working, we only went two weeks without a paycheck!  Pretty remarkable.  We can't possibly thank his co-workers enough for this huge miracle, other than to say they were an answer to our prayers.

 

As I filled out a tithing slip in March, an overwhelming feeling of gratitude overcame me as I realized that this was literally the Lord's money I was paying a tithe on.  He hadn't let us down! 

 

At this point, a year later, our finances are the same, if not better than they were a year ago.  I can't explain it, other than to know that the Lord has had a big hand in it.

Physical Rehabilitation

As frustrating and slow as the physical rehab process has been, it has actually been quite fascinating.  I wish I could say that the process is over, but it's not.  It's still very much a daily challenge .

 

As mentioned before, the day after surgery Jared couldn't as much as squeeze my hand.  People would come in from the rehab unit of the hospital to work with him a couple times a day for a few minutes.  But to be honest, they did most of the work.  But we could see slight improvement every day.  By the second day, he could squeeze my hand, but he couldn't release it.  But we were so happy!  At least it was something!  The workers did a lot of stretching.  They told us that stretching was very important so he wouldn't lose his range of motion.  I wasn't very good at stretching him.  He usually got mad that I was doing it wrong or that I wasn't strong enough to where he could feel it.  So I started to leave that job to his siblings!  (Even now it's a problem!)

 

The major progress didn't begin until he got to the rehab center a week after surgery.  At the facility, he was now in full-time rehab.  I was always excited to see the progress for the day!  It was little minor things that were such break-throughs and kept him going.  He clearly remembers sitting in his hospital bed and trying to move each individual finger.  He would stare at his fingers and concentrate.  Finally he was able to move his thumb, then his index finger, then eventually the other fingers came.  He was so excited!  That was about 9 days after surgery.  Another breakthrough was about 11 days after surgery.  He usually had to use his left arm to place his right arm on his lap.  Again, he focused really hard and after a couple minutes, he was able to lift his right arm onto his lap without the help from the left arm.  These small things gave him hope and kept him going.  He did little exercises during the day.  One he remembers is sitting at a table and they placed a tiny skateboard on the table.  His job was to place his hand on the skateboard and move it outwards (working his range of motion to the side).  He said it felt like it weighed 300 lbs. and he couldn't do it.  He would get so frustrated!

 

One thing that I watched that was fascinating is how they would tell him to do an exercise like a calf-raise.  One worker would help him stand while the other would continually tap his calf muscle to try to "wake up" the nerve or muscle.  And many times it worked!  They would also use an electric massager to try to stimulate a nerve or muscle.

 

He was excited to show us the new things he had learned.  Eventually he was able to get himself out of bed and into his wheelchair by himself.  I think the ultimate goal at the rehab center was to get him walking before they would send him home. 

 

I would dare say those first couple weeks were the most humbling, humiliating weeks of his life.  He needed help with pretty much everything - from going to the bathroom to getting dressed.

 

When he got home he started making rapid progress.  He came home with a cane (and actually a wheelchair, but never used it).  Within a day or two he was walking up and down the stairs, very carefully.  He started using an exercise bike and lifting weights and was also starting to get his strength back.  He was making such rapid progress that I was just sure he'd be back to his old lifestyle within a few months!

 

The radiation treatments, infection, and blood clot set the rehab process back dramatically.  It was really frustrating for him to digress.  And he would try to work on it, but it seemed like something always held him back!  I remember getting mad at him pretty much every night around March-April because he would work all day, then once the kids would go to bed he would start to rehab but he wouldn't stop!  It would be midnight and he'd still have a weight ball in his hand swinging it around!  I was just worried he was going to kill himself over from exhaustion and lack of sleep!  He would just say that it was addicting and he was feeling himself get stronger. 



This just might be my very favorite
picture ever. Drew liked to do the
rehab exercises with his dad.

Once he made the commitment to go full force and get completely off the steroids, he once again felt so horrible that his rehab digressed again.  But he knew that unless he had the steroids out of his system, he'd never fully recover.  So by July, he was still pretty wobbly and had little strength.

 

FINALLY, NOW, a year later, he is back at the gym, he is starting to see improvement in his coordination, his balance is quite a bit better, but we still have much to do.  And it's weird to find out the things that are actually a re-learning issue and not an inability issue.  For example, about a week ago we for some reason decided to focus on the way he turns around.  I knew he did it wrong, but I thought he was just unable to do it right.  But it turns out he had just forgotten how to turn.  So I showed him how I put my weight on the ball of my foot and pivoted.  And within a few minutes of practicing and watching, he looked a million times better!

 

His first attempt to run made us both laugh.  It was pretty sad!  But he is starting to run faster.  I raced him about a month ago.  I ran down and back, and he just had to run back, and I still beat him.  Tonight we raced up a hill with no head-start and we tied.  From the waist down his running looks normal.  From the waist up, he swings his left arm and his right arm doesn't move much.  So there is work to do, but continual improvement. 

 

The only thing he still doesn't have is side-to-side movement in his ankle.  We have worked to try to get it back, but not much progress.  So this may be a permanent loss, but we will continue to work on it.

Living Life in Two-Month Increments

Waiting to get the results of an MRI is something I wouldn't wish on my worst enemy!  We actually do a pretty good job of just living our lives, but they certainly creep up fast!

 

He had his first MRI in mid-January.  This was a "baseline" MRI.  He had just finished up radiation treatments, so they took an MRI as a baseline to measure any changes or growth from that point.  They were actually at that time watching to make sure the infection was clearing up as well.  So that baseline MRI still showed quite a bit of swelling.

 

He had another MRI in February, which showed improvement (because of the infection and swelling), another one in March, again showing improvement, and at that point they bumped it back to every two months.  The MRI in May showed that there was very little swelling, and both the MRIs in July and Sept didn't show any signs of tumor re-growth.  So at this point, almost a year out, all clean MRIs!!  (To contrast, his mom had her second tumor-removal surgery six months after her diagnosis.)

 

And this is basically the plan for the rest of his life - watch and wait.  His oncologist told us he will have MRIs every two months for about two years, then if everything still looks good at that point, they will spread them further apart.  We heard of a guy 10 years out that was getting his MRIs only once a year.  That seems like such a dream!!!

 

He usually gets his MRI on a Monday night after work, then his appointment to review the results is the following morning.  I don't think much about the MRIs until about a week before.  And even then, I try not to stress out about them.  But I know I'm stressed because I usually get a massive headache a day or two before.  We both usually sleep okay the night before (which is actually quite surprising).  Jared actually said he didn't sleep much the night before this last one.  But the minutes leading up to the results are almost unbearable.  We've always been pretty confident that they'd be good news, but the further out he gets, the scarier it gets.  It's basically the thought that the news just might turn our lives upside-down again.  I would try to describe the feeling by imagining the most nervous I've ever been in my life, then multiplying it by 100.

 

All of his MRIs at this point have shown some shrinkage in the hole in his brain.  But I don't think they expect for it to shrink much more.  He will always have a hole where the tumor was.

 

If he does have tumor re-growth at some point, that definitely isn't good news, but we will probably look into other treatment options.  It would obviously mean that what we've done didn't work and isn't going to work, so we need to find something else that might work.

 

At his appointment back in July, we actually received more great news!  He signed a consent form to have his tumor researched as part of a study.  (We weren't even aware, but apparently his tumor is being frozen somewhere!)  Only six clinics in the US are conducting this study, Hunstman Cancer Institute just happens to be one of the six, and his doctor just happens to be one of the ones doing the study!  His doctor told us that these types of studies have lead to big advancements in breast cancer treatments.  So he obviously didn't promise anything, but made us aware of the huge benefit this could be for him in the future, considering that if they did find something that was looking promising, it would be based off of studying HIS tumor!  Well, I should probably clarify that they won't just be studying his tumor, I think he said 250 tumors will be studied.  But this was such great news!  I had always questioned our decision to go to Huntsman versus somewhere much closer to home, and now I see that this was just another one of our blessings in disguise!

What's the Prognosis?

What's Jared's prognosis?  Only God knows that.  So we've never asked a doctor what he thinks the prognosis is, nor would we listen if he told us.  Because if people defy odds, the doctor can't possibly give us an accurate guess.  Each case is different.  The statistics would show that Jared has a 10% chance to live five years.  I don't think I would be any more or less scared if that number was 2% or 50%.  We don't really care what happens in other cases, that doesn't make Jared's outcome any different.  And the only outcome we are concerned about is his.  And dwelling on numbers or statistics only hexes his ability to fight the disease.

We don't dig much to find stories of people with his cancer.  We've already watched his mother go through it, so we've seen first-hand what can happen.  Generally the tumor keeps growing back, and at some point surgery and treatments just aren't worth it anymore.  Even the survival stories are depressing.  One we've seen is a lady in Oregon who was diagnosed 12 years ago (she, too, had young kids at the time of diagnosis).  The doctors told her she had less than a year to live.  She's still going strong 12 years later, and says she's been enjoying watch her kids grow!  But she has had to have tumor-removal surgery 4 times in those 12 years, and says that the effects from surgery have left her at this point with the brain of an 80-yr-old.  But she seems to live a very active lifestyle.  Her first re-growth didn't occur for four years.

Another was one I came across just a couple weeks ago.  It was a guy with his exact cancer, GBM, and the tumor was encapsulated.  He was given 6 months to live.  This guy just celebrated 25 years since diagnosis, and he's never had any tumor re-growth!  Yet he has suffered severe effects in his brain from radiation.  (But keep in mind, this was 25 years ago.  Radiation is much more precise now than it was back then.)

While these stories certainly give us hope, I guess we're selfish in our desire for more.  We both feel confident he has many good years ahead of him.  We both wish we knew what "many" is - is that five years?  Or 50 years?   As I said before, only God knows that.

The Importance of Support

Our story would most definitely be incomplete without mentioning the overwhelming support we've had.  I could not have made it through this past year without help and support.  We have been very blessed with good families, friends, neighbors, co-workers, extended families - I could go on an on. 

 

We are fortunate to both have close families.  They have been incredible!  And I can't start mentioning particular things, or I'm sure to miss something, but I do have to mention that Jared's family all came to be with him those first weeks in the hospital.  He had two siblings that flew in from Oregon, and his dad and his wife got permission to come home from their mission for a few days to help out and be with him.  We got in trouble one night because of all the family members visiting him!  The limit was 3 visitors, and we had 14 people cramped in the room!  But nobody wanted to leave.

 

His family organized a schedule to help take him to treatments.  I only had to take him once or occasionally twice a week, which lifted my load tremendously!  They've cleaned my house, made meals, changed schedules to accomodate our needs, phone calls of concern and support, I could go on and on - I will always remember and appreciate everything they've done to help.  This has been particularly hard on them to have their mom pass away from Glioblastoma, and to now have their brother with the same cancer.  Their situation would make most people bitter, but I've never seen any bitterness from any of them.  And I'm sure Jared's mom wishes she could be here.  But knowing Linda, she wouldn't have ever left his side!  And who knows - she probably doesn't!

 

My family has also been unbelievable.  From their acts of love and support, I can see that their love for Jared is more of a love for a brother or son than an in-law.  I do have to give particular mention to my mom.  Bill was very hesitant to go back to Hawaii.  My mom told him to go and serve his mission, and assured him that Jared would now be her mission.  And he has been.  Jared's sister, Julee, told me that she hopes to one day be the mom to her adult children that my mom has been for us.  I think that sums it up.

There has been much prayer and fasting on our behalf, many from other faiths as well.  Our neighborhood held an organized fast, and Jared had a big group from back home (Oregon) that held a fast. I, too, had high school friends that organized a fast on our behalf.  My extended family organized a fast, and his family has fasted on many occasions.  The power of prayer is undeniable.  When I look back to those first few weeks, I'm amazed at how well I held up.  It had to be the prayers.  And we've certainly witnessed many miracles already.

We've both been amazed at the generosity and concern from others.  There have been packages for the kids, cards, gift cards, yard work done, anonymous packages or money left on the doorstep, meals, flowers, visits, emails, the list goes on and on.

His co-workers have also made huge sacrifices.  They've given rides to or from work and they've donated leave of absence.

I get very emotional writing or thinking about our support.  I hope it is some indication of the gratitude I feel that can't possibly ever be fully expressed.