Archive for January, 2012

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!