Tyson's Brave Battalion

Tyson's Brave Battalion
Things don't go wrong and break your heart so you can become bitter and give up. They happen to break you down and build you up so you can be all that you were intended to be.” ~Samuel Johnson

Wednesday, August 27, 2014

Last chemo pill! Port gone. Life is good. CureSearch.

LAST CHEMO PILL!!!!!  Ty got to take his last pill (July 19) at a family reunion so there were lots of cousins to cheer for him.   
The rest of the summer has been so fun.  It has been awesome to no longer be worried about pills and fevers and germs.  Once in a while the fear of relapse (he has a 10% chance of relapsing) creeps up on us, but for the most part we are putting all of the cancer stuff in the past and moving forward. 
Now he gets his blood checked once a month for the next year.  He will get an echo to check for heart damage from the chemo in October and then every 5 years after that if everything is good.  He got his port removed at his first after treatment checkup...
  Throwing his coins into the new fountain
3 years ago (June 2011) vs now...he's all grown up!
 Right before his last port access, the red and white is from the numbing cream...and the bandaids that were holding it on.
 We finally got a pic of him with his fantastic oncologist Dr. Wright.  I caught her mid laugh...I think we were laughing about how funny Ty has been with her.  When he was first diagnosed he wouldn't even respond to her or acknowledge her presence.  His 3 year old way of dealing with it all was to shut out all medical people.  We have slowly gotten him to respond a little bit when she asks him questions but she usually has to stand in front of his video game to get him to respond. 
Once his port was accessed it wouldn't draw back, which wasn't a huge deal since he was getting it out that day anyway.  The IV team had a hard time getting a vein because he was fasting for his surgery...the hand one didn't work so they had to try again in his arm. Ty just laughed and said 'now I get two pokie prizes!' 
Getting ready for surgery...he was not thrilled that he had to wear hospital clothes...he has never been a fan and I'm not sure there has been too many times in the last 3 years that anybody has convinced him to put some on.  He hid under the chair when I first tried to take a picture but I finally convinced him.  You can see his port sticking out of his chest for the last time. 
And there he goes!  Off to surgery for the last time! (hopefully) 
It didn't take long and he woke up pretty good, ate some oreos and a popsicle and we were on our way.  It's amazing how simple it all was, and how different this port removal was from the other one...I wasn't crying hysterically in the waiting room this time. :)
Bye Bye port! 
Hello first day of 1st grade! (August 26)
He had to leave his first day a little bit early so he could do his 2nd after treatment visit.  This time he gets to do it locally.  The lady at the lab was awesome.  She was trying to prep him for getting a poke as if he never had one before, it was kind of funny.  After she was done she said he puts grown men to shame and gave him a present.  Ty made sure I was aware that the things she gave him did not count as his pokie prize. ha ha CHIPS...cancer has it's privileges and pokie prizes are an essential part of it...much better than holding down a screaming, writhing, terrified child.  Man are we happy to be on this end of the journey!!
I don't have CBC results yet, and I don't know what I did with the counts from last month...and I'm not sure that I care. How fun to not care what his counts are!
I know ya'll just dumped buckets of ice water on your head which is totally awesome, it makes my heart happy anytime an underfunded undernoticed disease gets some attention and much needed research funds.  If you are in the mood to donate a little bit more...or attend a walk in Salt Lake City that will inspire you and touch your heart...my favorite charity for childhood cancer research is CureSearch and their walk is September 27th at Sugarhouse Park.  CureSearch is doing some amazing things right now, including making some breakthrough research on Ewings sarcoma at the Huntsman in Salt Lake City. Every little bit helps and you can sign up for the walk at THIS LINK or donate to our team at THIS LINK.  If you wonder why we are passionate about CureSearch you can watch Ty's video from last year HERE  and see some more info about how underfunded childhood cancer is HERE and HERE. And then if you can, help us help cancer kids of the future. If I can get it together I will have an updated video for you to share at the beginning of Childhood Cancer Awareness Month on September 1st.
Whew! What a long blog post!  Thanks for sticking around!

Tuesday, June 24, 2014

Last IV Chemo!!

First things first before we get to last chemo... We just finished our Camp Hobe marathon where mom makes 4 three hour trips to Tooele in 2 weeks.  The big kids all stayed for a week (kids camp and teen camp) and Ty and Merin did the day camp which lasts two days. 
At the end of day camp they sing the camp songs they learn for the parents, in this pic they are singing baby shark.  We love love love Camp Hobe!!!
To celebrate Ty's last IV chemo treatment we went to Lagoon the day before his appointment
 Ty LOVES rollercoasters, one more inch and he can ride the really big coasters!
Here we go!  The kids got to come today to participate in the celebration...one of their favorite things about end of treatment you ask?  LAST STEROID PULSE!!!! 
Ivy the therapy dog was there to congratulate Ty, we love the therapy dogs
All hooked up for last video games, Ty's favorite part about treatment...and the main reason he's not that thrilled about being done with treatment 
And last Otter Pop while we wait in infusion  
 And there it is!  Last IV chemo Vincristine
 Then all of the nurses and staff sang him a no more chemotherapy song.  Man we love them.  It is going to be really strange to not be hanging out there once a month!
 They gave Ty a bundle of presents
  One of our favorite nurses of all time Kathy came over from ICS to watch Ty ring the bell.  She was there when Ty was first diagnosed and when he had that fungal infection.  She also goes to Camp Hobe so all of our kids love her.
And another favorite nurse Becky who was also Ty's nurse for a few days when Ty had that fungal infection.  There are a couple of other nurses that didn't happen to be there that day that we would have loved to have pictures of.   And I'm kicking myself for not getting one of Ty with his oncologist...hopefully we can talk her into one at his next appointment.  Thinking of Ty's oncologist and nurses makes me all teary...and if you know me getting all teary is not something I do often.  What would we have done without such great nurses? 
At clinic and in ICS they have a bell on the wall that has a poem about being done with treatment.  When the kids are done they get to ring the bell.  It is a moment we have been looking forward to for a long long time! What a fantastic moment!
While we waited for Ty's meds at the pharmacy we had some superman ice cream in the new lobby 
And when we got back Ty's cousins were waiting with a surprise congratulations party! 
Complete with donuts and balloons galore! 
One of Ty's requests for celebration was to eat at Bamboo Gardens so the next day we filled up Bamboo's extra room with lots of family members for lunch.
So what now?
Ty is still taking his at home chemo pills, he takes his last one on July 19th which is his official end date of treatment.  He will get his port removed a few days later and will continue to take Dapsone which is an antibiotic he has taken throughout treatment for 3 months after that while his immune system tries to get back to normal.  He gets an Echo in September to check for heart damage from the chemo and then an Echo every 5 years.  For his first year off treatment he will have a blood test and physical once a month to watch for relapse.  We will alternate months with our family doc at home and his oncologist at PCH.  Then after that he will gradually go in less and less over the years.  The farther out he gets from treatment the less likely it is that he will relapse. 
When I think of the last 38 months I am overwhelmed with how many people have helped us in one way or another or many ways.  A million 'thank yous' are in order to everybody reading this blog.  Thank you Oncologists and nurses.  Thank you social workers and child-life specialists and staff.  Thank you researchers and parents from the past who agreed to clinical trials even when they knew their child might not make it to see the results. Thank you Childhood Cancer advocates.  Thank you for every penny you donated to childhood cancer research.  Thank you to my mom and dad for being there for Merin and the other kids when Brady and I couldn't be and for your endless support. Thank you Grandma and Erin for making things fun for Ty when his immune system didn't let him leave the house. Thank you to my visiting teacher who understood more than anybody else could, who cleaned and arranged meals and visited and lifted me with all sorts of compliments. It was no coincidence that she became my visiting teacher a few months before Ty was diagnosed.  Thank you to a bunch of neighbors and family who cleaned our house top to bottom so Ty could come home to a sanitary environment.  Thank you for the countless meals brought to our family on treatment days. Thank you PA at Urgent Care who decided to do a blood test that led to Ty's diagnosis. Thank you Russ and Melissa for your cancer expertise and moral support. Thank you fellow mom at ICS and her pediatrician for helping Ryan with his earache.  Thank you Michelle: Ty's home health nurse who came at all hours of the day and night, who befriended us and the other kids, who brought treats to Ty, who understood how the siblings felt and helped them feel included and important, who helped Ty be brave for magic stickers (port access), and helped us all not go crazy as we dealt with all of the medical stuff.  Thank you Primary kids from church who made a get well poster for Ty and stayed home from church when they were sick so they wouldn't get Ty sick.  Thank you Miss Shelley, Ty's preschool teacher for creating a preschool that Ty could safely attend and for all of your kindness and concern. Thank you Ty's preschool buddies who also made him a poster, and their parents who let me know when Ty might have been exposed to something.  Thank you Youth from church who brought Ty frosted flakes and made cards.   Thank you to the many generous neighbors who donated money and signed a card.  Thank you Ty's Aunts and Uncles who visited in the hospital and brought Ty's mom treats.  Thank you to Ty's awesome cousins in Utah who organized a St. Baldrick's Fundraiser and shaved their heads in honor of Ty. Thank you Swore Farms for the pumpkins.  Thank you Randy's Tumbling for helping Ty build his strength back up. Thank you for the Legos.  Thank you to a wonderful neighbor who made Ty an 'I Spy' blanket even though she was dealing with some medical issues herself.  Thank you for the JoyJar. Thank you everybody who brought Ty Phineas and Ferb bandaids for his pokies.  Thank you neighbors and friends and family who sent inspirational cards, made Ty a blanket to stay warm during chemo, brought me a framed inspirational quote, and gave us a vinyl quote for our wall.  Thank you Ty's Kindergarten teachers for making his school year worry free for this mama.  Thank you to everybody who organized, donated to and attended the CureSearch walks.  Thank you Mike for running all the way across Idaho in honor of Ty and his cancer buddies.  Thank you Ty's cancer buddies and their families for reaching out to us and being our friend.  Thank you Make-A-Wish for the vacation that helped us turn our stress and worry and heartache into fun and hope and happiness. Thank you Utah cousins who let us stay at your house and brought lucky charms and kids and goodies to the hospital. Thank you Camp Hobe for helping our kids connect with other kids who 'get it'.  Thank you Bristol, Smitty and ISU for a great game, a fun night, and an awesome Triathlon for local kids with cancer.  Thank you Matt at KPVI for covering Ty's story. Thank you Joe, Elliot TherapyDog, Annie TherapyDog, Cheri, Oliver TherapyDog and Ivie TherapyDog for all of the smiles. Thank you for sending and bringing gifts that we used as pokie prizes and helped Ty have fun at the hospital. Thank you to our community for all of your support of the recent St. Baldrick's event in town. Thank you for sharing Ty's videos on facebook.  Thank you to Ty's local docs and nurses who put up with our midnight fever runs to the hospital and VIP treatment at the office.  Thank you Tenley Foundation for giving us a way to think about others.  Thank you Chubbuck Elementary for doing Penny Wars.  Thank you Moose at The Canyons for making Ty smile.  Thank you cousins who organized childhood cancer projects from a distance and made pillowcases for kids in the hospital.  Thank you for reading this blog, for praying for Tyson and our family, for writing comments of support on here and on facebook, for asking about him and telling people about him and all of your words of care and encouragement. 
Thank you for being a part of Tyson's Battalion.
 Thank Heaven...literally...for all of you. 

Thursday, May 29, 2014

Last Back Poke!

 The new entrance to Primary Children's...Ty's mask was bugging him today
 And what it looks like right when you walk in
 Ty found a craft in the waiting room, this is the Hem/Onc clinic, there are private rooms along that hall and one other hall, and then in the back is a big room with lots of chairs.  They call it infusion cause that's where we go to get IV chemo.

 He played video games while he got his Vincristine
 And then we headed over to the sedation suite for his LAST BACK POKE!!!!
 A back poke is a lumbar puncture where they take some spinal fluid out and put methotrexate (chemo) in so they make sure and get any leukemia cells that might be hiding in the central nervous system.  During maintenance he gets them every three months so this was his last one.  We are excited to reach this milestone, it takes us one step closer to being done with treatment!
Ty is super sweet when he is coming off sedation, he gives lots of kisses and wants to hold hands. 
He lost some weight, like half a poundish I guess and grew a tiny bit.  Weight: 20.4kg (almost 45lbs) Height: 108.5cm, WBC 2.7, ANC 1200, HGB 11.3, HCT 33.4, PLTS 306  That's really close to what he was two weeks ago when we did a CBC here. 5/12/14: WBC 3.0, ANC 1200, HGB 11.7, HCT 38.3, PLTS 269  So all of his doses stay the same.  He is on 1/2 (25mg) 6mp 4 days a week and 1 MTX pill once a week.  He starts steroids and the great news about that is this is his second to last steroid pulse!! Soooo as long as he doesn't relapse in the next few years (fingers crossed) he is ALMOST DONE!!!  He has one more treatment and takes his at home chemo pills until July 19th.

Tuesday, April 29, 2014

Two more left!!!

Treatment today!  We are getting soooo close to the end!! Ty made most of a frog craft before the game cart came rolling in.  The room we were in is in the middle of an uplift.  There have been lots of changes at PCH lately...not sure when they changed from PCMC to PCH?  They built a huge new addition across the street and added a giant lobby to the main hospital and we finally got to see some of the great additions today.  It looks great!
 His treatment was just Vincristine and they had it all ready at once today so he didn't get to play Lego Batman 2 quite as long as he wanted.
 The ice cream shop is back!!!  Last time we were there it was under construction, now it is back and in the new lobby.  Ty was so happy to get his superman flavored ice cream!
 This one is a better view of what some of the lobby looks like
 We chilled in the lobby for a while so the pharmacy could get Ty's meds ready.  While we were there Ivy the Therapy Dog came to visit, and a new one we haven't seen before named Betsy.  We had fun petting them while their owners got some lunch.
 The new fountain...it didn't have any coins in it so we didn't throw any in.  Throwing coins in the fountain used to be one of Ty's favorite traditions...we haven't seen the horsey anywhere in their new construction so I'm not sure if we can still call it Horsey Doctor.
When we got to Grandpa's house to pick up little sis there were a few fuzzy friends waiting for us.  Ty's counts are a little low so I'm not sure how smart it is to cuddle with baby geese but how could we resist?  Stats for the day:  Weight  20.7 kg  (45.5 lbs)  Height  108.2cm.  WBC 1.5 low, HCT 35.3, RBC 4.20, HGB 12, PLTS 231, ANC 500 !!  That's right on the border of neutropenic and holding his chemo pills that he takes at home so his onc lowered his dose of 6mp to 4 half pills and then 3 days off.  And she took him off his methotrexate.  Ty will do a CBC in 2 weeks to see where his counts are and then we will see what his dosage will be.  Hopefully they will rise a little and he can manage to stay out of the hospital in the mean time...it would be a bummer if he missed his end of the year field trips and stuff!

Monday, April 21, 2014

Happy Cancerversary!!!

Squishy Baff!  The expression on his face is how we are feeling right about now exactly 3 years after Tyson was diagnosed with A.L.L.  Happy and Thankful that we still have our little buddy!  Almost done with treatment and doing great!  I didn't remember that it was Ty's diagnosis day until a friend posted about it who's daughter was diagnosed with the same thing the same day.  So for Ty today was like any other day.  He went to Kindergarten in his new Easter shorts and minion shirt from Grandma, played outside and went to Grandma's to play with cousins.  Right now he is at the park!  Happy Cancerversary Ty!!!  You are officially a 3 year survivor!!! Yay!

Wednesday, April 2, 2014

Spring Break, Beehive Bears Carving, One more down!!!

A little spring break fun..flying kites 
 Ty using his favorite mode of transportation up to clinic...no not the elevator...dad's shoulders
 Craft time!  Making a fierce one eyed monster...the bandaids are holding the numbing cream on...sort of, it was leaking out the edges all over the place so we took off his shirt
 Still growing!  107.5cm and 20.4 kg (almost 45lbs)
 His onc mentioned to Tyson today that he didn't always love coming there...he doesn't believe her, to him cancer means eating otter pops, playing video games, and getting pokie prizes.  Not to mention Camp Hobe and Make-A-Wish.  Thank goodness he doesn't remember much about those first few days!!  So thankful he is doing so well...that little fear creeps up once in a while of him relapsing at some point but he has a good chance of that not happening so we try not to be scared and just be thankful.  We are heartbroken for another cancer friend Taleah who just relapsed after being off treatment for 3 months.  Same kind of cancer Tyson has. She is in for a very tough fight and her family needs lots of prayers.
 Still doing awesome!!  ANC 900, WBC 2.7, RBC 3.98, HGB 11.5, HCT 34.1, PLTS 245.  His little sis had fifths disease a couple of weeks ago.  We were a little worried that Ty was going to get it from her but it looks like he sailed through that one.  His onc suspects she actually may have gotten it from Ty because last month he wasn't feeling the greatest and his hemoglobin was low.  It can cause severe anemia in immune compromised kids but if Ty had it he escaped any problems from it thank goodness.  Little sis's rash was pretty awesome though...
She didn't have any other noticeable symptoms, so no biggie, just a cool rash...and I guess once the rash shows up you aren't contagious anymore which seems backward...
A very cool guy showed up at our house the other day, a bear praying for Tyson!  Carved by our very talented friend at Beehive Bears Carving.  You should see some of his creations
Starting his monthly 5 day steroid pulse...bring it on!!  This morning (day after treatment) Ty mentioned that he hasn't even cried yet.  Interesting how much more he is aware of what steroids do to him than he was at first.  It is helpful now that he is older that he understands a little and we can talk about how steroids means you have to work extra hard at being nice, it's not an excuse to be mean.  He got up this morning and got 'dressed' in some soft superman jammies.  We spend a lot of time snuggling on the couch when he is on steroids.  That's okay, it's nice to slow down once in a while.  Thanks for checking in!