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

Sunday, November 27, 2011

Thanksgiving, Clinic on Black Friday, CureSearch video

Holding hands...I can't remember why they started holding hands but it was pretty cute at the time...I think Ty was crying that he had a headache or something...UPDATE!  I just remembered why they were holding hands, it is because they were watching Harry Potter and it was going to be a scary part he he!
We had a great Thanksgiving weekend! Tyson had a CBC on Wednesday to determine if he was eligible to get his next treatment on Friday the 25th. His ANC has to be .75 or 750 and his platelets have to be 75. We got great news!! His ANC was 1200! PLTS 189, WBC 2.2, HCT 24.8. Not only did he qualify to go in for his next treatment, his ANC was high enough to play with cousins and join in the Thanksgiving fun! Yay!

Enjoying Thanksgiving feast number one.  He actually ate a little turkey and almost that whole roll. : )

See that little girl in the middle of all those bargain crazy gamers??  She (my 11 year old) asked to go black friday shopping as one of her Christmas presents.  Let's just say she likes to be involved in anything that is exciting...well she definitely got a story to tell this night.  The Walmart XBOX games went on sale at 10:00 Thanksgiving night and so I said I would take her then since we would be headed to Utah early Friday morning.  We didn't really need anything so we told my pregnant sister we would try to get her some games.  See how she is in front??  You would think she would have scored a game, what you can't see is the 100 or so game crazed psychos behind us who practically smashed us to death trying to get to the games as soon as they took the cardboard off.  Let's just say I'm glad my baby is alive...and although I too think black friday is fun...it is definitely smart to stay away from the gamers if you value your life. 

Bright and early at PCMC.  We made the earliest appointment possible so we could be back in time for Thanksgiving feast #2 with daddy's side of the family. 

Technically the clinic was 'closed' this day, they only saw the people who absolutely had to be there (like Ty who's protocol is every 10 days right now and they try to stick to that as much as possible.)  At first we couldn't find where they had hidden the video games tv's so we got him some markers.  The child-life specialist (who used to get him toys and fun stuff to do) hasn't said boo to him in months now, I'm not sure why, maybe cause he's pretty mellow and doesn't attract a lot of attention...but it's ok cause we know our way around pretty good now and video games are the best distraction tool for him. 

Ahhhh we found the xbox : )  He didn't even notice his port access much, and didn't cry when they took the sticker off, he did flinch a little but kept playing so it worked out good. : )  It was a pretty routine visit other than the fact that his HCT was pretty low Wednesday so they took another CBC to see if they needed to do a transfusion while we were there.  To our surprise his HCT had risen a little to 27, but his ANC had dropped to 600!  That changed the amount of methotrexate they were giving him that day so he stayed at his most recent dose instead of increasing it.  For my records...WBC 1.7, PLTS 145. Weight 14.9kg, same as last visit
He slept the whole way home and wouldn't eat anything that day, though he did have a little root beer at the feast

And Grandma brought the scooter thingys so he had a great time racing around the church gym where we had our Thanksgiving #2 feast. 

Today he is super grouchy so we decided to keep him home completely from church.  Usually if his ANC is high enough we will take him to Sacrament meeting with his mask on, not Primary (sunday school for kids) cause that is too much exposure to kids...He hasn't been to primary since April : (   but he did get to say a part in the Primary presentation last week and he did a great job.  They let him go first before all of the other three year olds 'ate' the microphone.  We appreciated that a lot. : )
 He had a 4 hour nap today and a nap yesterday so that along with the super crankiness are giving us hints that his blood counts are probably pretty low.  We'll probably ask for a CBC in the next couple of days if he continues to be sleepy and grumpy.  He might just feel like crap cause chemo does that to you and he doesn't really know how to vocalize that he feels like crap.  He didn't eat anything yesterday or this morning, but tonight he has had about 6 celery's filled with peanut butter so who knows?  maybe that means he is starting to feel better and maybe won't need a transfusion this time.
His news story about Bristol the Football tee fetchin dog aired on Thanksgiving...and I think a couple more times this weekend too.  They did get a few of the little factoids wrong but that's ok cause they did such a great job and we are so thankful they aired his story and included the part about CureSearch.  We are so thankful for the Children's Oncolgy Group who CureSearch raises funds for!  Ty is on a study for them right now and they are a major contributor to Ty's high chance of survival!   The video below was made by Utah moms with Cancer Fighting Cuties and gives you an inside glimpse of what cancer is like for kids...I've posted it on my blog before but I thought I should again.  The little fighters on this video hold a special place in my heart, what is so sad and heartbreaking is also so inspirational cause these are very strong, very special kids.  Thank you for the prayers, love, dinners, care for our kids, and contributions to childhood cancer research.  We are in awe and humbled by the amount of good we get to see and experience because of Ty's cancer. 

Thursday, November 24, 2011

Ty was on the news today! They did a great job!  We head to Primary Children's for his next appointment tomorrow bright and early and then rush home...  Hopefully we'll make it home in time for Thanksgiving #2.  We'll post more about the holiday and his treatment this weekend.  Happy Thanksgiving!!  And thank you KPVI NewsChannel 6.  Sometimes that clip works and sometimes it doesn't so if it isn't working you can also see it HERE

Sunday, November 20, 2011

Ty's new buddy Bristol the football tee fetchin dog

We had a great time at the game today!!  It was SOOO nice to get out of the house and do something fun! We experienced today another example of how great people in our community are.  Ty was invited to be Bristol's special guest at the ISU game.  Who is Bristol you ask??  Only the coolest dog ever...
Sometimes Ty doesn't know what to do with all of the attention he gets...but I think he is catching on that it is pretty fun

Playing catch with the mascot Benny the Bengal...I think Bristol wants to join the fun
ISU's kicker came to meet him

And one of the coaches brought him a bunch of very cool gear..helmet, signed football and jerseys, and some cool shorts

We went early to the game to help Bristol warm up
Getting all ready to fetch the tee...how cool is this dog!!

Ty would run out and place the tee for Bristol
Then they would say 'get the tee' and let go and he would take off like lightning

Bristol also loves to play with footballs, Ty would toss it to him and he would bunt it right back with his nose
Ty stood at the entrance and watched the players go by
And during the game Ty got to sit on the floor and help send Bristol to get the tee

Running along the sideline after helping Bristol

And waiting for Bristol's next turn while we watch the game

Benny the Bengal gave him a ride on the scooter all over the field between quarters.  Ty (and the rest of us) had such a good time!!  Getting chemo, pills, back pokes, and pokies totally stink...but Ty might tell you that stuff like tonight might just make up for all the junk he has to go through!! Thank you Bristol for being such a cool dog!!  And Thank you for inviting Ty to be your special guest!! 

 By the way, he is feeling great right now!  He goes for his next dose of chemo the day after Thanksgiving.  He gets a higher dose of the methotrexate and then some more vincristine.  The vincristine makes his feet 'crunkily'...I think it makes them feel a little like they are asleep so he complains about that sometimes, but other than that he is doing good so we'll see what his next dose does.  Happy Thanksgiving!!  We can't even begin to list all of the things we are thankful for but our hearts are full to bursting as we think of them and as we think of all of you.  Thank You!!

Tuesday, November 15, 2011

Clinic today...Interim Maintenance II Day 1

We really enjoyed the break we had between his last chemo and the start of this new phase, Getting a routine blood test here, it's so routine now that we didn't even hold him to get accessed, he just layed there and let her poke it in

Ty felt pretty good, we even took advantage of a semi-warm day and went for a bike ride

He still prefers bland foods like plain pancakes which he's been asking for each night at bedtime (yep, he's smart, he knows that if he asks for food we say yes and thus he gets to stall bedtime...but he eats it sooooo win win)

So here we are on our way to clinic at PCMC bright and early.  I told him to look at the sunrise, it makes the clouds pink.  He looked and said in a very you are dumb mom and I am smart way,  'the sunrise makes the sun come up'.

Waiting for the nurse..they have cool water bottle floaty thingys

Here's how I prep his port for the access poke...four bandaids with the cotton thingy ripped off so it doesn't soak up the numbing cream.  Yep Phineas and Ferb bandaids are a must. : )

This is what the port looks like accessed, the port goes right up against the skin so when you access it is is a very shallow poke.  Then you have a tubey that you can get blood from and put stuff into whenever you need.  The sticker that they put on to keep it in place and keep it sterile is the worst part of it...it hurts when they take it off

In infusion getting the methotrexate and vincristine.  You can see the MTX covered up if you look close, it is light sensitive.  This is the part of this phase I wasn't expecting.  Looking at the protocol on paper it looks exactly like the phase he was on right before delayed intensification, called Interim Maintenance I.  Not so we found out today cause they started him today on 2/3 of the highest dose he got in Interim Maintenance I.  Which means as they gradually increase the dose every 10 days we will be much higher than we ever were in that phase, increasing the likelyhood for low counts, nausea, and mouth sores.  Darn!  He did so well in that phase that we were so looking forward to having high counts and feeling ok during the holidays.  We'll see how it goes.  He had a headache on the way home and puked a couple of times, not sure if that is from being sedated or the chemo, or a combination of the two.  Hopefully he can keep something down later today.

Getting ready for sedation, a few extra stickers and stuff to monitor his vitals

He doesn't really like this part, but he tolerates it.  He won't lay down until he is too out of it to keep himself upright.  They give him Versed and Ketamine

Coming off sedation...right here he is telling me I have five eyes.

So now we are taking it easy, watching Phineas and Ferb and hugging the kiddies that we missed all day.  Some very awesome people are bringing dinner, Thank You!!  and we just snuggle with Ty and wait and see how he does.
 On our way home I got a text about an upcoming Idaho moms with cancer fighting cuties dinner...yay!  There is something really therapeutic about being able to chat with other moms who know what you are talking about.
Daddy and I enjoy the drive to and fro cause we get to chat. I retold all of the details of Ty's diagnosis which brought up lots of memories and emotions that I haven't thought about for a while.  Brady told me some of the details of his experience of getting the news abroad as well. It's strange to remember life before I heard the words, "we did see blasts, and it is Leukemia".  Reminds me of how blessed we are, how many ways the Lord prepared us to be able to handle this, how much love and care we have received over the last few months, and how much our eyes have been opened to the great blessings that come from stuff that is hard.  It really does help push out of your life the things that don't matter. We LOVE the little bald warriors and their families and see so much sickness and heartache but we see so much good too.  So much good.  Cancer really does have the potential to bring out the best in people.  We are so thankful to witness it...so thank you!
Oh, and today's stats...Height 92.4cm(pretty much the same as diagnosis), weight 14.7kg (32.3lbs)  WBC 2.1, HCT 26.4, ANC 800, PLTS 256 RBC 3.06
PS  this video was done by Ty's second cousin Sean...for more info on the St. Baldricks event scroll down to older posts..

Wednesday, November 9, 2011

UNBELIEVABLE!! St. Baldricks Event at Rocky Mountain Dermatology in Logan, Utah

Cancer has the potential to bring out the worst in people...it also has the potential to bring out the BEST...
WOW!!  I cannot put into words how I feel about this event and the many many people who got together in just a few weeks and organized an event that raised over $11,000 and counting... for cancer kids!!  40 years ago children diagnosed with cancer had a 10% chance of survival...now they have a 78% chance of surviving, which still isn't high enough, but much higher because of people like the great people who organized and contributed to this event.  Kids with cancer don't have a voice without them.  Parents of those bald fighters are financially and emotionally exhausted in their fight to keep their kid alive and we couldn't give these kids a voice without the help of Great charities like St. Baldricks and the AWESOME people who participate in their events. 
So to all of you newly bald men, women, and children who might be mourning the loss of your hair tonight I just want to say a giant heartfelt THANK YOU for shaving your head to help give the young bald warriors a chance to stay alive and grow up.

The event was SO FUN!!  We are so glad we were able to go...Hmmmm someone is missing from the pic above...

Oh! Thats because she was busy at the moment riding a pony!

Who knew you could set up a carnival ride on the lawn of a doctor's office?  So fun!! 

Going for another ride and another and another and another!!  The ride operator was so nice to let us clorox wipe the ride each time!

I know I know, his numbers are way too low to let him ride a pony...but how could I resist?  He got a good clorox wipe down after. : )   The people there were so great...
This lady has a son named Tyson who fought cancer, they gave Tyson a very special Tiger that says "Never give up" when you squeeze his paw.  Thank You!!  I wish I had gotten more information about you so I could send you a note.  He's been hugging his Tiger and pushing the button ever since.  He loves it!!
They treated Tyson like a superhero, gave him a St. Baldricks shirt and a whole bunch of Phineas and Ferb bandaids...he was pretty funny about it, he wouldn't take the shirt from them, but when he saw the bandaids he was very excited!  He isn't used to so much attention!  After a while he started hiding whenever someone new wanted to meet him...and Dr. Rob let him have a break in his office while we watched the video of his cool son Sean shaving his head in Arkansas...we watched his brother John shave live via webcam from Oklahoma! 

AND THE SHAVING BEGINS!!  Tyson watching his second cousin Shelly and her 6 year old son say goodbye to their hair

She looks like a doll doesn't she??  Soooo pretty!  And look at how brave her son is!!

Blowing the little itchy hairs off of her cousin : )

Some more second cousins Jenny and Will
This is mom's cousin Marla and her husband Keith

And mom's cousin Dr. Rob before...

and after!!

...And more cousins and their friends too...Can you believe this??  I am just in awe, I am speechless!!

Look at us losers with hair!!  Tyson and his new battalion of bald friends outnumber us by far!! 

If you would like to see a full list of the shavees with their pictures click HERE
Now I know shaving your head is huge for most anyone, but I have to hand it to these ladies, it is a particularly monumental sacrifice for a girl.  It reminds me of how hard it is for those sweet little girls who wake up with handfuls of hair on their pillows and even though that's the side effect of chemo that doesn't physically hurt, it is so hard for them.  I hope many of them can see this picture and know they aren't alone...and that BALD IS BEAUTIFUL!!   
and for Tyson...Happiness is a fresh supply of Phineas and Ferb bandaids  Thank You!  That was a very thoughtful gift!

And I have to add some shavees...who couldn't come to Logan but shaved for Ty anyway...

Noah, our neighbor : )

Peyton, our neighbor too : )  Thanks guys!!
Missy, who's family members shaved at the event. She's away at college, but shaved her head anyway