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One Brave Boy

Wow!  What a week it has been…I can’t even remember where my last post ended and this one began.  Last week, we came home from the hospital at the beginning of the week (I think!), and had a pretty great week.  Ty golfed with his dad and brother and friends every day that he was home.  Saturday, he was doing so well – spent three hours walking the mall shopping with Erika (he has never done that on his best day!), golfed with his dad (and beat him, I might add!).  Darren, Tyler and I went to Training Table that night to grab a bite to eat.  Halfway through his dinner, he got a strange look on his face, and said, “We need to go now…I’m not feeling good”.  We headed out of there, and he threw up in the car – lots of fresh blood.  It’s such a horrifying feeling when that happens. We hurried home and packed a quick bag and headed for the hospital.  When we talked to them on the way down, they were hoping that maybe we could just ‘tank’ him up with blood and plasma to help his blood clot, and send him home by morning.  We checked into the hospital about nine Saturday night and were hoping to be home by three in the morning.

As the night progressed, things were not getting any better.  Tyler was continuing to vomit blood and not just small amounts.  It was actually coming out of him as fast or faster than they were transfusing it into him.  His hematocrit levels were dropping quickly.  Tyler was looking worse and worse by the minute, and Darren and I were terrified.

Early Sunday morning, they had called the oncology team, the GI team, and a surgery team together to discuss a solution, if any.  They called Darren and I out into the hallway to discuss their options with us.  The GI team said if they tried to go in with a scope there was just too high a risk of perforating the stomach.  He pretty much refused to do that procedure.  The surgery team said they could open Tyler up and try to find the problem, but he probably would not survive the surgery, and whatever they fixed still wouldn’t fix the cancer.  The radiation oncologist said that they could try to go in through an artery in his leg and find the bleed and burn it, but the risks far outweighed the benefits.  When I asked what he would do if it was his son, he said, “take him home.”  We went into the room and told Tyler what the doctors had just shared with us.  He took a deep breath and said, “Let’s go home, I’m not afraid.”  My most difficult day as a mother.  Right after they told us, someone brought in chocolates for Mother’s Day – not a holiday I want to remember this year.

The doctors got us ready in a hurry to go home.  They did not think Tyler would make it through the night Sunday night.  We brought Tyler home Sunday night to be here with the family and not just in a dark, cold hospital room.  The doctors had called hospice and they were here to meet us when we got home.  It was the most surreal feeling I have ever experienced, thinking I knew what lay in store for us that night.  When Tyler woke up on Monday morning, he wanted to go golfing.  The whole family packed up and headed to Davis Golf Course and played nine holes.  It was very hard to watch – Tyler could hardly swing the club.  I didnt know if we were going to have to call an ambulance out on the golf course.  But I don’t know how he does it.  He still could hit the ball better than most on their best day!  After seven holes, he was too worn out to play anymore.  We came home, got ready for a family picture, and had some friends come visit Tyler, and went to bed again.  I cannot describe at all how it is to try and rest when one you love has health like this.  Every move Tyler made had us jumping up and making sure he was still breathing.

Tuesday morning, Tyler decided he wanted to finish the radiation treatments he started and see if it could make a difference.  He is not done fighting…Long story short, Tyler was not expected to make it through the night Sunday night.  It is Tuesday night now and he is still here and ready to fight more.  We know that Tyler will be with us for as long as the Lord has planned for him.  We are grateful for every second we have with him, as we are with every one of our children.  We have had some conversations with him and our other children that I never imagined I would have to have.  Tyler is not afraid – he knows where he is going and that what is in store for him there is wonderful.  He knows that Heavenly Father is in charge and he will leave this earth when his appointed time is here, whether it is tomorrow, next year, or in fifty years.  We still have great hope for his future.  The bleeding has stopped and he seems to be feeling a bit better.  I have to believe it is because the Lord hears the prayers of those who love Tyler.   We cannot express how grateful we are for the love and support of family, friends, and the community.  I am so sorry that I cannot answer all of the emails, texts, and messages.  I love hearing from you and I love your words of support!  Thank you for keeping our family in your thoughts and prayers.  Tyler is truly Fighting to the Finish – thanks for helping him!

Tyler - Fighting to the Finish

 

Warriors…

In the hospital at the same time - again!

I know there are so many families with Cancer Cuties that spend months and months on end up here, so I feel guilty for feeling picked on for being up here again one more weekend!  Once more, Tyler made it through a great week, golfing and enjoying time with his friends and hanging out with family.  Sunday morning rolled around and it was time to go back into the hospital.  Tyler’s blood counts were once again at ‘record lows’ and he needed another transfusion.  This time, we knew that the only way to get real answers was to get a scan.  We have really avoided those since January – they are not usually our friends.. So about two in the morning on Monday, after some pretty traumatic procedures (have you ever heard of an Anderson tube? – no fun), we headed downstairs for a CT scan.  I know every person reading this who has had experience with cancer knows the terror that grips hearts when you or someone you love is in that tube.  I can’t think of anything in life I’ve done up till now to compare to it.  We came back up and tried to get a little bit of sleep – Darren in a rocking chair and me in a ‘recliner’ – yes, that’s what they call it!

When the doctors came in the next morning, they had okay news, and not-so-okay news.  Tyler’s tumors have hardly changed – small amounts of growth in a few of the tumors, but no new metastases. We were so relieved to hear that.  We knew that GI had to also look at the scans so were waiting on them.  When they got around to us, they informed us that the larger tumor on the upper side of Tyler’s liver has now pressed up against the stomach wall, and that pressure is causing the bleeding.  If they were to go in and scope to see more, they were quite sure that they would perforate the stomach wall. Things did not sound so great then…they were going to put their heads together with the oncology team and see what the best options were.  We needed to wait another half day to see what they decided.  After calling an interventional radiology team, they decided that they need to try and shrink the tumor that is pressing on the stomach. The only way to do this is by radiating it.  I, along with many others, wondered why they didn’t radiate it in the first place – I finally learned why today.  The liver is very sensitive to radiation, andwhere Ty has so much disease in his liver, if they were to radiate each tumor, they would destroy the whole liver.  They do feel that they can localize the radiation to this one tumor and shrink it enough to take the pressure off the stomach wall.  To make a long story short, we just got back from LDS Hospital, where the radiation will be done.  I loved our new doctor there.  He was kind and gentle, and completely willing to answer all of Tyler’s questions.  He got some new ‘tats’ today, not the kind he was hoping for – he would have liked a barbed-wire around his bicep, or maybe Superman along his back.  Instead, he has four beautiful little black dots around his chest to help make sure the radiation hits exactly where they want it!

We begin the actual treatment tomorrow (Wednesday) morning.  Our family asks once again for your pleadings with the Lord on Tyler’s behalf.  We need this procedure to shrink that tumor and stop the bleeding inside Tyler.  We should know in three weeks if it will be effective.  I would also ask that if you can donate blood, do it today!  Not only in Tyler’s behalf, but I watch these little cancer cuties getting this life-saving blood and know that without healthy people being willing to donate, these little lives would be lost.  I believe that probably 20 people had to donate blood and plasma to keep Ty alive at this point.  So, so grateful to those who do this regularly.  Thank you!

I also am grateful for your prayers for the warriors in this picture below.  They are all fighting valiantly to stay alive and I am honored to be able to be able to call them ‘friends’.  These four kids know more about courage and spirit in their short lives than most learn in a lifetime.  Thank you for being willing to share your journeys with me.  I love you Tyler, Brandon, Josh and Maddie.  You will always be my heroes!

I love you Tyler, Josh, Brandon and Maddie!

 

 

We can do hard things…

Tyler receiving blood and platelets - didn't feel too good :-(

Almost two years ago, a sweet couple from Rexburg, whose parents went to school with me, lost their daughter in a tragic drowning accident.  She was inspired and brave enough to document her experiences and feelings with the world - changing many, many lives along the way.  You can read all about this amazing little family here.  She took this unbelievably horrible trial and turned it into something that could help so many others, instead of becoming bitter and angry for the rest of her life.  I didn’t know Ashley personally when I first heard about sweet Preslee and the accident, but followed her blog, as my daughter and friends did as well.  When I read the entry that said Preslee had returned to her Heavenly Father, I cried most of the day. I have since met Ashley, and she is every bit as brave and inspiring in person as she is on her blog.  She is my idol. Ashley’s motto “I can do hard things”, became my motto too.   Funny enough, I thought some things in my life back then seemed hard, and her motto helped give me motivation to do things I didn’t want to because I thought they were too hard.  Ashley and her friends made baskets for Primary Children’s Hospital, filled with blankets, toothbrushes, food items, and a little block of wood with the saying, “I can do hard things” on it.  I was given this little block for Christmas and referred to it often.  Little did I know what lay ahead for us…

After Ty was diagnosed, I really referred to it often.  I kept one on my fridge and said it to myself every time I walked by it.  The next Christmas, I was given a big frame with the words “We can do hard things” on it.  It sits where the whole family can see it and be reminded of what we CAN do.  I know with the help of the Savior, we ALL can do hard things.  Because of His sacrifice for us, he knows how hard it is for us and is there to help us make it through.

Tyler ended up back in the hospital early Saturday morning after another round of vomiting blood – fourth admit this April.  When we checked into the Emergency Room, his hematocrit level, which should be around 38 normally, was 17 – a very scary place to be.  They didn’t waste much time at all getting him checked in and things started for a transfusion.  Didn’t really even worry at first about the ‘whys’ until we got him stable.  The GI doctor that morning said he needed ten units of blood and plasma.  Saturday was spent transfusing him all day.  Today is Sunday and he has been receiving blood most of the day today as well.  They really feel like the ulcers just didn’t heal properly and his clotting factors weren’t great so he’s been on all sorts of drugs to help with that.  They don’t feel the need to go in and scope and risk the possibility of doing more damage, thank heavens!  Ty keeps reminding the doctors and nurses that he has a golf tournament coming up this Saturday that he is signed up for, so would they please get this taken care of before then!  He actually golfed 9 holes on Wednesday (thanks Johnny, James, and David!), and 18 holes both Thursday and Friday before we ended up in here!  The doctors can’t figure out how he had the strength to pick up his club, let alone golf for five hours three days in a row!

We are hoping to go home this evening (Sunday) once all the transfusions are done and he shows his levels are staying stable.  Thank you to my sweet friends who mowed my yard, cleaned my house (ouch!), brought freezer meals, and helped get me ready for the conference I have this week.  I feel so humbled and grateful to people who step in and save me before I go under…you are truly ones who ‘lift up the hands that hang down and strengthen the feeble knees’.  Thank you will never be enough.

Remember, in my sweet friend Ashley’s words, “When you find yourself in a difficult situation remember the phrase, “I CAN DO HARD THINGS.” It’s possible . Life is hard, we just have to learn how to plow through it.” Thanks Ashley, for giving me strength and inspiration to be able to face this.  I love you!

P.S. It’s Sunday evening, and we are home!  I wrote this blog post this morning in the hospital – feeling every bit like I needed to share my motto.  When we got home tonight, the doorbell rang, and there was a sweet family at my door, whom I had never met. They came to share their love and concern for Tyler, and brought a gift for our family – a beautifully framed picture that said, “I can do hard things”.  I don’t think this is coincidental.  Thank you sweet Armendariz Family!  We are touched by your thoughtfullness.  Thank you for listening!

I love this! Don't ever forget!

What a week…

These are the posts that are the hardest for me…trying to find the positive in a situation that hasn’t felt anything but painful.  This past Wednesday, Tyler had had such a good day.  He went to school for a few hours, went to lunch with me, and golfed with Darren.  I made the HUGE mistake of saying to Darren as we were going to sleep, “Tyler hasn’t thrown up once today!”  Lately he has had quite a bad time with the nausea and it has been a daily thing for him now.  At one thirty in the morning, he yelled for me from the bathroom.  When I went in there, he had been sick and it was not good…he had been vomiting up blood.  He kept trying to convince me it was grape juice because he had taken his meds with grape juice earlier in the evening.  In my heart I knew it wasn’t, but he kept insisting he knew what it was, so I just went out on the couch and laid by him for a while, trying to decide what to do.  About two hours later, he was sick again, and I made sure he used a bucket instead of the toilet.  This time there was no question what it was.  I called my amazing friend, Kathy Merkley, who has not only been my good friend and exercise partner for 15 years, but also my “medical advisor” (she is a nurse practitioner at Primary Children’s).  I woke her out of a dead sleep, and she ran over to check him.  She had us head down and she called ahead so they were ready for us.  When we got there, after taking labs and doing a few IVs (that was not fun), they got him into ultrasound, and then into an operating room to scope him and see where the bleeding was coming from.  They told us it would take about thirty minutes.

Darren and I were already pretty upset about the whole thing, and trying to process what was going on.  After almost two hours, we still had heard nothing.  By then, we were really shaken.  Finally, they called Darren in and told him by phone that Tyler was okay but had bleeding ulcers and they were getting them taken care of.  Such a relief to know that he was still here and they knew what the problem was…

Tyler went into the PICU for about 24 hours, just to have someone monitor him and make sure he did not bleed internally.  They took labs every 20 minutes for a while and watched his blood counts.  They had three IV’s placed in him – two for meds and one ready in case he needed to be transfused quickly.  It was really frightening to me – so many new things to worry about.  I would have thought I had seen it all in the last year, but there are so many things about our bodies that can go wrong.  What a miracle that so many things go right most of the time!  I am so grateful for the doctors and nurses at PCMC for their care of Tyler (and Darren and me).  I know that I have had my issues with them the past year, but they were so loving and attentive to Tyler – I am very grateful.  I am also feeling so much gratitude for doctors who spend more time away from home than they should to help kids like Tyler – and for their willingness to learn about how bodies work and how to fix them.  Because Tyler’s problems this time were GI-related, we had a GI team moreso than an oncology team following him.  There were things about Tyler’s liver and GI issues I had never heard before and that were very enlightening.  I got some training about his nausea and pain that I probably would not have gotten otherwise.  I’m trying to think “tender mercy”, although it hasn’t felt very ‘tender’, or ‘merciful’, to be totally honest…

We are still here in the ICS (Immuno-Compromised Services) Unit waiting for Tyler to be able to tolerate food.  He was allowed ice chips this afternoon, and tried a little food, but it’s not feeling so good for him.  I think we’ll stay one more night, just to be safe, so we don’t end up running down here again in the middle of the night.

Once again, I’m trying to learn patience, and trying to find the purpose for Ty’s pain.  It is literally tearing pieces of my heart out to watch him suffer.  How I wish it was me in that bed instead of him.  What does a mother tell her son when he asks when he’s going to feel better and that he’s getting tired of feeling sick all the time?  He hardly ever says anything about all he has gone through…but I think being in this hospital is pretty much sheer torture for him.  He would rather be home (like we all would), but I don’t think I dare take care of him there just yet!

So, while I sit here and watch him sleep, I think I’ll start searching talks again for something for us to grasp onto this time.  General Conference talks this time were written just for me, I’m quite sure.  So grateful that I can be fed that way.  If you didn’t get a chance to listen, you should take the time now.  The three talks that stood out to me the most were President Eyring’s, Elder Rasband’s, and Elder Scott’s.  They touched such a chord in me, I knew they were a gift from Heavenly Father to me to help our family get through this.

It’s Sunday morning here in PCMC, and I think we’re going to finally go home!!!  Thank you for your prayers and support of our family.  I hope that I can be a support and help to so many who have been there for me when they have times of need.

Finally! We're going home!

Purpose for Pain

I’ve been trying to organize my thoughts for the last few weeks on our family’s journey.  We have had a crazy few weeks and so many things have gone through my head.  We went to California a couple of weeks ago and it was pretty hard on Tyler.  Sad to say, we spent most of the weekend in our hotel with one sick Tyler.  We had tickets to Six Flags at Magic Mountain on Saturday, so drove up there from San Diego and after about four rides, Tyler was too sick to keep going.  Poor Tanner and Taylor had to leave after only a few rides.  They were awesome about it and did not complain at all.  I felt so bad, but there are lessons to be learned for them.  They will know compassion and patience that most people won’t learn until much later in their lives.
I had a total meltdown in the San Diego airport as we were trying to get through security.  I hadn’t shed one tear the whole week, but felt the pressure rising each day as he got sicker and sicker.  Finally, Tyler had to go find a chair in the airport and could not make it through the security line.  I went over to the Delta desk to see if someone could get him a wheelchair.  The sweet man who helped me (actually, the poor man), made the huge mistake of asking if “I” was going to be okay.  He was so sweet and I hate being shown compassion when I’m feeling so vulnerable.  I knew what was coming, and I totally lost my composure on this poor, sweet man.  He came running around the desk and gave me the biggest hug and told me he was going to go right back in the back room and pray for us.  Then a few other agents came and hugged me and cried with me.  Very embarrassing, but also very strengthening, knowing people everywhere want to help and are willing to pray for a complete stranger.
Tyler has been more nauseated than usual and has had quite a bit of abdominal and kidney pain.  It’s such a scary place to be.  I have probably given more foot and leg rubs than a professional massage therapist!  That seems to calm him down and help with the pain management and nausea.  We have changed a few meds and he has seemed to be a bit better the last two days.  What a relief!  We are hoping this can last!
The other night as he was hurting so bad in the middle of the night, I felt so helpless and frustrated.  I was thinking about what purpose pain and suffering have in this life.  I know so many feel pain, whether it be physical, emotional, or even spiritual.  I also do know that there are purposes to our pain, if we are willing to learn from them.  The next morning, I started looking up ‘purposes for pain and suffering”, just to help me understand this more.  I found an interesting quote from Anne Morrow Lindbergh, the wife of Charles Lindbergh, the pilot whose baby was kidnapped and ultimately killed.  In looking back at her life, she wrote this:

I do not believe that sheer suffering teaches. If suffering alone taught, all the
world would be wise, since everyone suffers. To suffering must be added
mourning, understanding, patience, love, openness, and the
willingness to remain vulnerable. We will all suffer in one way or
another, but we need a certain
perspective
if our suffering is to teach us.

I hope that I can learn that perspective so that Tyler’s (and my) pain will not be in vain. We have a sweet sister in our ward who lost her battle with liver/pancreatic cancer yesterday, less than two months after her diagnosis.  Her work and her body here on this earth were just done.  It does make me wonder what Tyler needs to accomplish on this earth through this illness.  I know from blessings he has been given that the Lord has purposes to fulfill through him.  I hope as his family members, we can do what we’re expected to do to fulfill His purposes, as well.  Once again, I LOVE hearing that Tyler and our family are still in your prayers.  We do know that is why he does as well as he does.  By the way, he is in Las Vegas with Darren at work today, and I just got a picture texted to me of Tyler bowling!  I think that warm weather and sunshine is ‘just what the doctor ordered’!  Thanks for your part in our fight!

 

Belmont Park in San Diego with my boys!

 

 

 

Attitude of Gratitude

I have thought a lot this past week of trials and hardships. I have watched people I love going through difficult things and have felt so much sorrow for them.  I know that same empathy and love has been felt and shown to my family and me so much over the last nine months (yes, last Wednesday marked the nine month mark!)  It’s been so interesting to see how people handle the tests the Lord gives to them.  So many are so humble and valiant…knowing that none of us are getting out of this life without experiencing the Refiner’s fire.  I have also seen others face trial with bitterness and anger.  This makes me so sad, because I know it’s easy to do…it’s our natural tendency.  But when I feel my ‘human’ side of me start to wonder why, or feel angry that Tyler has to go through this, I remember that this attitude isn’t going to change one thing. It only makes what we’re going through feel even worse.  Being angry about it isn’t going to make it go away faster, nor is it going to make the outcome better.  It could, in fact, make the outcome even worse.  As far as health issues go, there is plenty of research that shows that attitude makes a huge difference in our physical health.  We all have to know Tyler has that going for him.  He was recently interviewed for a teenage magazine (I’ve forgotten the name) but I wasn’t with him for the interview and they just sent me the proof to make sure I was okay with what was said.  I couldn’t believe what I read.  Here are just a few questions and answers:

Q:  “How is your life different now than it was before you had cancer?  How so?”

Tyler:  “The things that I care about the most are different – before cancer I cared a lot about sports, being popular…stuff like that.  Now I care more about my relationships with my family and my friends.”

Q: “People are constantly complaining about one thing or another.  How do you always seem so upbeat and positive despite your current situation?”

Tyler:  “Well, I could complain, but it wouldn’t change my situation…so I decided to just not talk about it.  I can either be happy and feel sick, or just feel sick.  I choose to be happy.”

Q:  “What do you want people to know about you?”

Tyler:  “That I’m always happy and I’m trying to make the best of a hard situation.”

Q:  “Finally, what message he would like to leave the reader with?”

Tyler: “We all have to go through hard things, whether we like it or not.  The way we choose to handle them determines our character and also helps us to get through them better.  If I can help someone who is going through something hard to find the positive in the situation, then I feel better about going through what I’m going through.”

Wow…a lesson for his mother, again.  I wasn’t there for the interview…no one coached him on what to say.  These are Tyler’s own words and feelings.  I feel so honored and blessed to be his mother.  Actually, I feel that way about all of my kids!  They are all so much wiser and stronger than I am.  I am sure they were sent to me because Heavenly Father knew I was going to need a lot of help down here!

Okay, quote time!  :) A friend put this quote on Facebook and I loved it.  Thanks Dirk!  Not sure it really goes with what I wrote about today, but it is a great answer for making each day more enjoyable!

“The best antidote I know for worry is work.  The best medicine for despair is service.  The best cure for weariness is the challenge of helping someone who is even more tired.” – Gordon B. Hinckley

He is my favorite…I have quotes from him taped all over my house and look to them when I feel sadness and discouragement creep into my life.  I am grateful that there is one who knows my sorrows.  Christ knows me personally and has atoned for my sadness and fear. There is no grief, no pain, and no sickness that His Atonement and His Love cannot heal.  When it feels like too much, I always know that His arms are wrapped around our family and He is there to comfort us.  Of that, I cannot ever deny.  I hope whatever heartache you may be feeling, you can receive this witness as well.  He is there for all.

The Giving Tree

The ´Giving Tree Kids´ Tyler, Josh, Brandon and Maddie

Last week, our awesome cancer fightin´ kids met another awesome fighter to give the ´Giving Tree´ to.  Josh has been fighting osteosarcoma for about four years now, and is another one of the bravest kids I know.  Brandon, Maddie, Tyler, and a couple of us ´moms´ loaded the truck up with the tree and drove up to Morgan to find our new friend.  It has been so fun to watch these kids..as soon as they get together, they are instantly friends.  It felt like we all had known each other for years.  The kids sat on the couch at Josh´s house and talked and laughed and compared chemo stories…so fun for us to listen to!  We will forever be indebted to and will miss Dylan for his unselfish gift of the tree.  His gift has brought joy to five other cancer fighters, and given these kids another friend to share things that they probably wouldn´t and couldn´t share with their other friends.  We love you Shaw Family!

Tyler has been feeling pretty well this last week or so.  He has some good and bad days, but generally more good than bad…We are enjoying the good ones, and just putting one foot in front of the other on the ´not so good´ ones.

Last night I went to Tyler´s SEOP..where the ninth-graders register for high school.  When I walked in, they handed me a packet of school work and tests Tyler had done in the last year.  There were a bunch of papers from eighth grade when they all participated in ´Reality Town´, a day where they get to choose a career, and basically live an adult life for the day.  They get a job, salary, wife and kids, and oh yeah, the bills, and have to make choices for their life.  It´s a great reality check for these kids.  I read something Tyler had filled out called ´My Life Path´.  As I sat in that room and read what he wrote that his ´life path´was, according to him as an eight-grader, I could feel palpable sadness overwhelming me.  I thought I was going to need to leave the room.  Luckily, Tyler wasn´t with me in that meeting.  I thought of what he, along with our family was thinking about and doing when ´Reality Town´was happening last year.  I think they had this about two weeks before Tyler was diagnosed.  We were all just going along with our lives, hustling and hurrying to the next stop along the way.  The things that were so important, to Tyler and to us, seem so unimportant now.  Interesting how life changes…the rest of the papers in the file were not completed, because Tyler had missed the rest of the school year.  My emotions were so close to the surface as I sat through the rest of that presentation.  I was glad I didn´t know anyone in there, and that no one wanted to talk to me!!!

When it came time to actually register, in walks Tyler, all smiles as usual.  He shuffled through the papers that I had, completely unphased.  I realized at that point, that if it isn´t going to affect Tyler in a negative way, I cannot let it get to me like that.  My sweet friend Megan, who is an amazingly positive person, AND a stage four cancer survivor, shared this quote yesterday.  I loved it, and wanted to share it here.

¨Happiness is an attitude.  We either make ourselves miserable, or happy and strong.  The amount of work is the same.¨- Francesca Reigler

Isn´t that so true…the amount of work is the same.  Sometimes I feel like it´s a lot of work to make myself happy, but it´s also a lot of work to stay miserable all of the time.  I think, like Tyler, the choice to use that much work might as well be made to make me happy.  Isn´t that what it´s all about?

 

A Night With Mike Schlappi

After such a ‘downer’ blog post last week, let’s move on to something amazing.  Last Fall, I was attending a conference, and heard a most amazing speaker, Mike Schlappi.  He spoke on overcoming trials and positive outlook.  I was so moved by his presentation, I knew I wanted my family to hear him too.  I spoke with him afterward and we talked about him coming into the school for an assembly.  I came home and tried to find out how to get him here through the district, and ran into a few  walls, and eventually decided to put it on the back burner.

In December, through mutual friends, we connected once again.  This sweet friend contacted Mike and told him again about Tyler and he agreed  to come speak at a fireside in our ward.  I do not think it was a coincidence that our paths crossed again…I knew the youth needed to hear his message and I am so grateful that Mike listened and was willing to sacrifice his precious time to help these kids.  He came last week and shared his amazing story to the youth of our ward and some other surrounding wards.  The whole time he spoke, the audience was completely silent, which isn’t always the case with youth!!! That’s how powerful his story is.  Mike was shot point blank in the chest when he was 14 years old, by his best friend.  That bullet hit his spine and paralyzed him from the waist down.  Mike had been a promising athlete and had plans of becoming a professional athlete.  Instead of letting his tragic circumstances bring him to despair, he almost immediately decided he would make the very best of his situation and be positive – “Happy Schlappi”, as he called himself!  He ended up being a ‘professional athlete’ in the ParaOlympics for four years!  He spoke with us about ‘attitude therapy’ and how to change your position in life
to be heading in the right direction.  Like I said, ‘AMAZING’.  Becky Anderson also shared a wonderful message about handling life’s trials and passed out ‘worry rocks’ to each one in the audience.  We were told to rub our worries into our rocks, then at night, put our rocks on our nightstand, and give our worries to the Creator, the one who knows us the best, and ultimately give them to Him.  She is always AMAZING, and had a deep impact on these kids as well.  She gave worry rocks to our family when Tyler was first diagnosed and shared that story with us.  I have seen more than once a member of my family rubbing their worry rock…

Then Sue Gray, our sweet friend from Salt Lake sang a beautiful song called “Every Little Tear”, reminding us that He sees every heartbreak and sorry we are experiencing and will help us get through our darkest moments.  Can I say AMAZING one more time?!

Well, what a great night…Brandon, Tyler, and Maddie, three ‘rockin’ cancer fighting kids, all got to meet and visit with Mike afterwards and he gave them his book “Shot Happens” (yes, that’s really the title!  I think the sub-title was ‘I got shot…what’s your problem?’)  I read the book in two days.  It is full of life-changing ways to stay positive and headed in the right direction.  I’m going to bribe each one of my kids to read it!!!! It will change the way you view everyday life, I promise!  You can go here to get it, or see clips of his presentation.

Thanks to all those who helped make that night happen.  Becky and I have felt from the beginning of this journey that we needed a night for the youth to deal with these hard things, not just cancer, but all of the trials these youth face on a day to day basis.  Like I said earlier, I
don’t believe in coincidences, I think everything happens just as it should, and I am so grateful this happened ‘just like it should have!’  Thanks again Mike, Becky, and Sue!

Mike, Brandon, Tyler and Maddie - All heroes in my book!

Another scan day…

I have to admit it is getting harder and harder for me to write these blog posts. There is a big part of me that wants to keep things so private…Maybe because things aren’t going as well as our family would like them to and I don’t want to sound like I’m pessimistic or ungrateful…I’m not sure.  I have been struggling to find a way to write this post for almost two weeks now.  Last night at a meeting, a friend who also has fought this cancer battle with her child, asked about Tyler and said she had been checking the website and there was nothing there.  After we visited, I decided it was selfish of me not to let people know how things are going, when the reason they are going as good as they are is because of the prayers of all those who love Tyler, and who probably check the website to see what they need to pray for next!!!!

Tyler had his scans two weeks ago today.  I cannot even begin to explain the terror that gripped my heart that morning when I woke up.  As I wrote earlier, he has not been feeling too well, and I really didn’t want to know that the reason for that may have been because the cancer was spreading.  As I knelt to pray that morning and pour my heart out to my Heavenly Father to help us get through the day, I had the most amazing feeling of peace come over me that it all would be okay.  The strange thing is, I never know what ‘okay’ is anymore.  I guess I’m learning that ‘okay’ means that Heavenly Father is in control and whatever happens is exactly what He planned for us before we came here.  Scary thought, huh?

I always hate watching Tyler lay in that tube with his arms above his head, watching his face…watching through the glass at the faces of the techs and doctors.  I try so hard to read everyone…trying to get an answer to what the scans might say before I get a phone call.  Needless
to say, scan day has turned into one of my least favorite days ever!

We always come home right after scans now.  Much better to get a phone call and be here to receive the news, than to sit in an office for hours and have poor Tyler a wreck before the news comes in.  It’s a much better solution to be in our home and all be together.

Dr. Wright finally called with the scan results the next morning.  She said that the three larger tumors had grown, but only slightly…less than a centimeter larger.  The numerous small tumors throughout his liver had basically remained unchanged in size and number, but show some evidence of ‘necrosis’, which basically means dying.  So, in other words, his cancer has hardly progressed, and the smaller tumors may be beginning to die, ‘possibly from treatment’ (that’s what the radiologist report said).   I don’t know if I’ve said in earlier posts that we are on an alternative cancer therapy we started in November.   I honestly believe that if these tumors are dying, it’s from the alternative therapy we are trying.  It only makes sense.  They have never showed evidence of necrosis in any earlier scans.

Here’s the thing…is it amazing that I could be ungrateful for a miracle?  Every doctor we’ve talked to who has looked at his scans (and there have been quite a few) says that this is a complete miracle.  Tyler’s kind of cancer does not usually sit around being ‘stable’.  It quickly spreads, usually to the lungs.  Tyler’s lungs are clear.  It also quickly spreads within the liver, making the liver function compromised and eventually failing.  Tyler’s liver functions are remarkably stable.  If this isn’t a miracle I don’t know what is…but this part of me really wanted the kind of miracle that said, ‘Oh my gosh, the cancer is gone and we don’t know how that happened!’  How selfish is that?  Now I’m choosing my miracles..I’m sure my Heavenly Father is shaking his head at me.

So, that’s why I’ve waited two weeks to write this post.  Trying to learn to be grateful for the miracles I’ve been given.  I’ll get there.  I just hope He’s going to be patient with me.  I really am so relieved and happy that the cancer has not spread..that goes without saying.  And we will still leave no stone unturned while helping Tyler fight.  And, we still are eternally grateful to you all for your unfailing prayers and faith.  I know in my heart that the story would be different if I didn’t have an army of people who love and support Tyler and I’ll never be able to thank you enough.

Tyler has still struggled to feel  well .  It has been interesting to compare how healthy he was in September, October, November, then just started declining a bit in December.  He still struggles with extreme nausea.  He hasn’t been able to go to school this whole week.  He is still sleeping about 16-18 hours a day.  It’s hard to figure out why if the cancer is basically the same.  Last night as he was up a good share of the night, I thought of when I was pregnant and thought the three months of nausea were never going to end.  My heart was just aching for him,
knowing that he’s got to be so discouraged about feeling that way all the time, but really, he still NEVER complains.  Occasionally, he’ll say ‘Oh, I really don’t feel good’.  That’s about as big as it gets from him.

Thanks so much for your continued prayers for our family.  You know, you’re in this battle with us, because your prayers are part of our fight.  We need them to be able to get through this.  Please always remember that you’re helping Tyler every time you’re on your knees and remember his name.  Thank you!

Happy New Year!

It’s been such a long time since I have posted an update on Tyler’s journey.  It’s been a long December and to be honest, it’s been a hard one as well.  About two weeks before Christmas, Tyler started to become much more fatigued than normal.  He would come home from school and fall asleep on the couch and sleep until morning.  Then, he would try to get up and shower and go to school, then just be too tired and nauseated to make it to school on time.  He also was losing his appetite and after a few days, just stopped eating pretty much altogether.  Our hearts were feeling pretty heavy as we watched him decline the week before Christmas.  On the Tuesday before Christmas, I took his temperature, and it was 102.7, which is too high for a boy with cancer. We took him down to Primary Children’s Hospital and they hooked him up to fluids and an antibiotic and after a few hours, he really started perking up and looking better.  They decided he was just dehydrated and possibly had an infection of some sort, although his blood counts were really pretty good. We took him home that afternoon, and he seemed to improve on Wednesday.  Thursday morning, his temperature was back up over 102 and we headed back down again.  They loaded him up with fluids and antibiotics again and decided we could take him home, but still didn’t know what was wrong.  His blood cultures had shown no bacteria of any sort, and they couldn’t find any source of the fever.  We brought him home again, not sure if we would be back in the next day.

I think Erika posted something on Facebook that day about needing a Christmas miracle.  Posts and emails were coming in that prayers were on the way, and I knew that people who knew  what was happening were on their knees asking for a miracle.  He still hadn’t really eaten and was down about seven pounds, not what we were hoping for.  He kept craving Tepanyaki (go figure) and we tried to go there on Friday night, but he was sick before we hit the parking lot.  So on Christmas Eve, he wanted to try it again (when he decides he wants to eat something, there is really no changing his mind!)

Well, we made it inside Tepanyaki that night, and Tyler ate EVERY bite of shrimp and chicken that they put on his plate that night, not to mention the salad and rice…Once he had some food in him, he started to perk up and get some energy back.  They decided he either had some sort of bacteria that the antibiotics finally kicked in and killed, or a virus that just had to run its course.

We didn’t make it to the cabin for Christmas, but we were able to come up later Christmas evening.  First time in probably twenty years that we haven’t had Christmas at the cabin, but we had a wonderful Christmas day at home.

I have no doubt that Tyler’s turnaround was from the many prayers that week that were offered in his behalf.  I cannot thank everyone enough for this.  Watching Tyler decline that week was probably the hardest time I’ve ever had, aside from the original diagnosis.   It’s been an extremely emotional month for me.

This Christmas was probably the most meaningful to me and the family, on so many levels.  I am so grateful for Heavenly Father’s gift to me, the birth of His son, Jesus Christ.  I am eternally grateful for His life and for His sacrifice so that I can be with Him and with my family for eternity.  I cannot imagine going through this without that knowledge.   I am so grateful for my family and the happiness they bring to my life.  I don’t think I realized until this trial how my family is truly EVERYTHING to me.  Nothing else matters to me at all.

I didn’t do a very good job with neighbor or friend gifts this year, so if I missed you for Christmas, please know that you all are in my heart and I hope you had a wonderful holiday.  The year I needed to recognize people the most and they went mostly ignored by me…not the way I had planned things.

And once again, thank you for your petitions to Heaven on Tyler’s behalf.  I want you and your children to know that Heaven is listening and answering.  Tyler is proof of this, over and over again….May 2012 bring you all the choicest blessings life has to offer!

Happy New Year from the Smith Family!

 

 

 

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