Back to Life

 

1st Post Treatment MRI

 

Josh had his first follow up MRI and lumbar puncture on March 11th.  Everything looks great!  We are thrilled with the news!

 

Getting "back to life" has been harder than we anticipated it would be.  The chemo and radiation has taken such a toll on Josh's body that he is extremely tired most of the time.  We were all so excited for Josh to go back to school and do all of those things that he has missed doing that we didn't take into consideration that he might not have the energy to do it all.  He has been frustrated with the price he has to pay after he exerts himself to do fun things.  "Fun" comes at a high price!  It doesn't help that he got the flu shortly after his return to school and also a spinal headache from his last lumbar puncture.  He has had to go back to "home bound" study for school and we are all trying to be more patient with his recovery!  Recovery has been harder than treatment........we didn't expect that.





                                     This is what Josh has been up to since treatment ended:

Josh and Brianne Groom all dressed up for the Valentines dance.  They had a progressive dinner, played games and made it to the dance for a whole 20 minutes before it was over!  He had a blast!

Josh and Rylee Cook in their matching t-shirts for the Spring Fling.  The weather wouldn't have told you it was spring as they had to dash to the car in a hail storm.  They played games at the old Jr. high, ate pizza, sculpted ice cream and actually made it to the dance in good time!  All the couples in their group had matching super heroes t-shirts from Captain America to Iron Man.  It sounded like a lot of fun!



We took a trip south to try to warm up and to see Grandma and Grandpa before they leave on their mission.  We had a blast at the Clark County Fair and enjoyed our time with family!  It was 90 degrees in southern Nevada.  We had a hard time coming back home to weather in the 40's.

Drake was a hit with the ladies!! 

Josh, Uncle Quincy, and Jensen

Josh and Uncle Kevin who is often mistaken for Kyle



  We haven't seen Lex for a number of years and had to miss her wedding because of treatments.  It was so good to see her and meet her husband Tim. 

 

 

Bryson (Kevin and Di's son) won his round of "Mutton Bustin'" and we were all so excited for him.  He was the only contestant that stayed on the sheep the entire 8 seconds!  Way to go Bryson!




 

Catching Up!

That has been the name of the game ever since we returned from Utah!  But that's the good news--WE'RE BACK!!  Josh finished his last round of radiation on February 12th, 2013 and we have been partying and catching up ever since!

His radiation was done at LDS Hospital.  He had the best therapists and nurses working with him who made each day a little easier for Josh.  I swear it sounded like they were having a party each time they would take him back for his treatments!  When he hit his half-way point of treatments they gave him a "Happy Half-Way" plate pictured below where everything was cut in half!  The bottle of water was also only half full and they promised they didn't drink it before they gave it to him!

10 treatments=half-way!!

His "Happy Half-Way" Plate!

We celebrated half-way with dinner and a movie!

 Our excitement for hitting half-way was nothing compared to when he finished!  After his last treatment he got to ring a "victory" bell  in the hospital while everyone cheered!  And boy did we cheer!  We had watched others ring that bell, and now it was finally Joshua's turn.  

Bernice and her family had been busy and when we got to their house they had a "Heart Attack" waiting for Josh!  They had gathered notes from EVERYONE in the family written on hearts and placed them all over the walls and floor!  Here are a few samples of his love notes:

"Josh, Now that Radiation is over you probably picked up some super power like spiderman did from the spider.  I just want you to know your secret is safe with me!  If you can fly will you come pick me up one night?  Love you Bud!  Uncle Richard"

"Josh--Pres. Hinckley once said, "Go forward in life with a twinkle in your eye and a smile on your face, But with a great and strong purpose in your heart."  Josh--The twinkle in your eye and smile on your face throughout adversity and hardships will forever be an example in mine and my families' lives.  Love, The #2 greatest KYLE in your life! (close race for #1)"

"Josh--It has been a treat for me to spend time with you during this LONG experience!  Your faith and strength have been amazing!  You stared adversity in the face and smiled!  Thank you for your example!  You have shown my kids that we can all do hard things!!  Good luck getting back into the swing of things!  Praying for you!  Love Aunt B"

"Josh--You are the man!  You face obstacles with a smile on your face and a determination to keep on going.  Keep fighting and know that we love you and support you like a good pair of socks with no holes in them!  =)  Love, Uncle Jaydel & Family"

We concluded the night with a pizza party and a movie!  Thanks Aunt B for making it so special for Josh and for taking such good care of him!

As a family we had a party on Valentines day which seemed very appropriate as our hearts were so full we thought they would explode!  We went to dinner and came home to have treats and celebrate a life spared, a body healed and a family back together again!  Joshua's radiation mask served as our centerpiece for the evening.  When the therapists gave Josh his mask they said he could run over it with the car, or burn it.  So far it has survived.  Surely we should be able to come up with some great object lesson to use it for before it is destroyed.  It's fate lies in Joshua's hands.

Joshua's radiation mask.  Treatment was done face down.  This held him in place.

Kyler & Andrew

Drake, Kelsie & Josh

Kyler

Kelsie

Andrew

"So now what?" is the question we are asked.  We have learned that the end of treatment is just one door shut once you've had cancer.  There are many doors still left to shut and one that will hauntingly stay open for the rest of his life.  Josh has an MRI and Lumbar Puncture scheduled for March 11th.  This will be the beginning of scans that will be done every 3 months for the first year, every 4 to 6 months the second year, and then yearly after that.  He will be closely followed by his Oncologist docotor for the next 10 years of his life.  After March 11th we can officially say that he is in remission and we can then make arrangements to get his shunt taken out.  So Josh will move ahead and close each door, one at a time, and do it with a smile on his face!

Turning a Corner

We feel like we have turned a corner and can see the end in sight!  It is such a great feeling!  

On January 4th, we headed back to Primary Children's for Joshua's post chemo MRI.  We were hoping for good news, and that is exactly what we got!  His MRI looked clear and his lumbar puncture came back clean so they gave him the green light to move ahead with Radiation.  I think Josh was more excited to get his PICC line removed than he was to be done with Chemo!  He was eager to pose for his first PICC free picture!  

We were able to meet with the Radiation Oncologist before we came home and get Josh all set for Radiation.  Our boy walked away from that appointment with 5 little tattoos and a desire to NEVER get another one!  He was surprised at how badly they hurt.  The little "freckle" tattoos serve as mapping points for the laser beams.  He will have his head and spine radiated for 20 days and it will be done in Utah at LDS Hospital.  We have had a full week to be home and we have enjoyed each day!  Josh, Kyler and I will be staying in Utah during the week and coming home on the weekends.  We are so grateful for everything falling into place and know that it is NOT coincidence.  We have seen the Lord's hand throughout this journey and are so grateful to Him for His wisdom, love, mercy and patience with us.  We are so grateful that our son's life has been spared and know that this experience has served a great purpose.  It has changed us, taught us and we desire to be better people because of it.  This experience in and of itself has brought more joy into our lives.  We hold on to hugs a little longer.  We say, "I love you" more often.  We appreciate the little things and truly understand the great gift that life is!  How can we not be grateful for this trial?


While we were in Utah, we got see my sweet niece, Marissa, be baptized.  It was such a treat to be there and see her take this great step in her life.  She was literally glowing.  She was so happy!  I am happy for her.  One of the great things about living in Utah for the next month is that I will get to see a lot more of Marissa and her family!!  I love you Riss!
   

Joshua's Wish Revealed

Okay, I have been anxiously waiting, trying to find time to get this post written.  As many already know, Joshua's wish has been secretly in the works since late October.  Keeping it a secret was one of the hardest parts of his wish.  Keeping it a secret was also the best parts of his wish!  His brothers and sister were SO surprised!  Joshua's wish was to do Christmas for his brothers and sister--to be their Secret Santa!!  It turned out to be everything Josh hoped it would be and LOTS more!  

So, it started out like any other Christmas--our children wake up 4:30 A.M.  Yes, that's right, 4:30!!  There was no convincing them to go back to bed, so we rolled out of ours.  Now, they weren't expecting much for Christmas because we had talked and talked about how tight things were this year because of all of Joshua's medical expenses.  And as hard as they tried not to be disappointed, one present a piece and a box of their favorite cereal was just a little hard for them to find joy in.  

I was actually impressed with how well they were handling their disappointment.  So, with forced smiles on their faces, they headed into the kitchen to have some of their Christmas cereal.  As they were going in, Josh casually said, "oh, I got a present for everyone" as if he had almost forgotten.  Everyone gathered back into the living room and Josh handed out a small present to everyone.  They opened their gifts to find a "Make A Wish" button.  We wore them when we secretly went shopping in Utah after his last round of Chemo.  With a million and one questions on their tongues, Josh said, "just so you know, my wish has already been granted.  I'll be right back."  And with that he was gone.  You could feel the excitement in the air as our other children thought that he was going to finally reveal his wish to them.  And he did.  It just wasn't what they were expecting!  

With the kids anticipating his return, he went and changed into his Santa suit.  He loaded a gift for everyone into his Santa sack and headed back into the living room.  He entered and said, "I'm your secret Santa!"  As part of his wish our house had been decorated in lights by Merrill Landscaping and we went on a super fun sleigh ride at Mountain River Ranch.  Both were generously donated to him to help fulfill his wish and both came with cards that said, "from your Secret Santa."  He told the kids that his wish was to do Christmas for them.  He told them that he knew that everything had been about him for a long time and he knew that that must be hard.  And because of that, he wanted to do something for them.  One at a time, the kids sat on his knee and he gave them a gift out of his sack.  It was sweet.  It was emotional and the kids thought that was the end.  Little did they know that he was just getting started.  You should of heard the squeals when he said, "well, I better go refill my sack!"

 The morning lasted and lasted as he returned time and again from what seemed like his unending room of gifts.  He shared stories of his wish--of how we went shopping in Utah after his last round of Chemo and hid all of the evidence before our return.  Of how BYU-Idaho Book Store wrapped all of the gifts (thank YOU!!)  and of how all of the stores were so generous when he did his shopping.  It was a beautiful morning where, for just a moment, we forgot that Josh was sick and it was just our family having the most wonderful Christmas ever!  That was the greatest gift.

Thank you "Make A Wish" for making Joshua's wish a dream come true!

A Highlight From Our Secret Shopping Expedition In Utah

  We were touched by the generosity and hard work of "Make A Wish."  They truly made Joshua's wish magical.  They had contacted all of the stores that we were going to be shopping at to let them know about Josh's wish and that we would be shopping at their store.  ALL of the stores were amazing, generous and did fun things to make his experience memorable.  We are grateful to Toys-R-Us, American Eagle, Best Buy, Sports Authority and Costco for their generosity and kindness.  Never has shopping been more fun!

I was already a fan of Costco.  I shop there whenever I can.  But the Murray Costco, store #764 is now my all time favorite!  Let me share with you why.  As we arrived the manager and all of the assistant managers were there to welcome us and shake our hands.  They introduced themselves and sent us on our way.  When we were ready to check out we got in line like everyone else.  Boy was it busy.  But they waved us over and said, "no waiting in line for you today" and opened a new lane and checked us out.  As we finished, I noticed a crowd had gathered by our check out.  The manager handed Josh a Christmas card and said, "Merry Christmas from our family to yours.  You are now part of the Costco family."  Josh opened the card and found a merchandise pick-up form.  He looked quizzically at the manager and he told him to take it to the "pick up" window to find out what it was.  At this point all of the assistant managers had their phones out and were either taking pictures or recording.  Josh was handed a brand new X-Box 360 and a game to go with it!  Can you believe that they had all pooled their money to buy it for Josh?!!  They knew Josh hadn't asked for anything for himself and they wanted to make sure he got something for Christmas.  We were so touched.    There were tears from managers and on-lookers alike.    

                So if you are ever in Murray, stop at Costco.  Tell them that Josh sent you!!

Round 4 of Chemo

As we headed out the door for round 4 of Chemo, a sweet note was left on my windshield and the  picture below was on my phone as my screen saver.  Both of them were from the same sweet girl.  Kelsie is so thoughtful and sweet.  I appreciate her kind heart and loving ways.  I am so lucky to have been blessed with such a wonderful daughter. 

 

 

 

December 11, 2012 

If you have to be in the hospital, December is a great time to be there.  Every day Josh received some kind of gift or treat.  He was given this stocking from the "Helping Kids with Cancer" organization.  It was a very generous and thoughtful gift as it was filled with everything Josh loves.  Really, I couldn't have put together a more personalized stocking for him myself.  So if you need some ideas for stocking stuffers for a teenage boy, here are some ideas:

Rubiks cube, Axe spray, Laffy Taffy candy cane, sock monkey, beenie hat, nerf torpedo, Reeses snow man, M & M's, sticky hand and Toblerone.

 

Kyle came down on Thursday to be with us and take us home.  It was so good to see him.   He offered to sleep at the hospital that night, but I just didn't think he would fit on the bed.   

Believe it or not, but all of the Gatorade seen in these pictures were consumed by Josh in just 1 night.  Josh has Diabetes Insipidus meaning his body can't regulate his water intake and urine output on its own.  Without his medication he drinks and drinks and drinks!  And because of all of the drinking he.......well you get the idea.  During Chemo they want him in this crazy drinking state to flush the chemo out of his system.  One of his Chemo drugs is especially hard on the kidneys.  On the last night, his sodium levels weren't coming up so they put him on a strict Gatorade diet.  It did the trick and it let him work on his artistic skills..............

Once we got home Josh was headed back to the hospital for his first and hopefully last blood transfusion.  His red blood cells were really low.  He was given 2 units and had a mild reaction to it.  His head broke out with the hives!  Needless to say, we spent the entire day at the hospital, but it sure worked like magic.  His cheeks were rosie again and he had more energy.  I wanted to ask them to hook me up!

                                                                 The Giving Tree
A few days before Christmas this adorable tree was delivered to our house by the Erickson family.  It was decorated with encouraging quotes, gift cards, and a touching story of another "giving tree" given to Tyler Smith during his courageous fight with liver cancer.  We were so touched by the generosity and love that this tree held.  Tyler's motto was "F2TF" which stands for "Fight 2 The Finish."  Josh is fighting Tyler!  

Family Home Evening--BYU-I Style

How cool is this?  A BYU-Idaho student ward, Family Home Evening group, planned a Family Home Evening for our family.  All of our children had a blast!  After learning about each one of our children by putting them on the 'hot spot' they helped them make custom t-shirts.  It was organized by a young man who is from Kyle's home town of Logandale, Nevada, McKay Winzinried.  Our children loved the attention from all of the college kids.  There were some real artists in the group and our kids walked away with some awesome t-shirts.  We even had Brother Riggin's famous bacon waffles for dessert!  It just doesn't get much better than that!

 

So, thank you for thinking of our family and for making all of our kids feel special and important!  It was just what we needed!

 

                                                         Weekly Well Wishes For Josh

Josh's Sunday School class is always so good about writing notes to Josh every week and delivering them to him.  One time they even held Sunday School at our house.  Below they are all pictured wearing Josh's orange bracelets, sending a little love and support his way!  I am always touched by their thoughtful notes and they always end by saying, "I am still praying for you!"  Josh thinks he has the best Sunday School teacher in the world!  I agree.