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

Thursday, December 29, 2011

Almost to Maintenance!

Cool ice sculptures eh?  Today was our last treatment of Interim Maintenance II.  Now he has a two week break and then he starts the next and final phase which is called Maintenance and lasts until August 19th, 2014.  This phase consists of less trips to primary children's, but more chemo at home.  He is in a clinical trial so the day he starts he gets randomized into one arm of four different possible treatment plans.  We don't know what his exact plan will be until he gets randomized, but we have a general idea.  He will take a pill called Mercaptopurine (6mp) every day.  He will take a methotrexate pill once a week, and then a five day pulse of dexamethasone with vincristine either once per month or once every three months depending on which arm of the study he ends up in.  The chemo that he gets at home usually does not cause hair loss, so his hair will keep on a growing now.  That's a little scary cause I think people are more likely to remember to be careful around him when he looks like he has cancer, now that he will start to look like a normal kid, it will be harder to remember that his immune system will still have its ups and downs for the next three years.  ugh.  Here's hoping for lots of ups, they try to keep it at a certain level during this time, but I guess sometimes it is not easy to get it stabilized.

Taking vitals...weight today was 15.4kg, (33.9lbs) that's up a little : )  and I actually remembered to take note of his height today, 94.1cm.  That means he has grown 2.1 cm since diagnosis day. I don't really know what that means, I'll have to find some kind of growth chart and see. 

In the zone getting ready for port access

Now back in infusion waiting for the drugs...Notice he is leaning forward, playing pretty attentively, in fact he entertains everyone there cause he always makes loud sound effects when he is fighting someone playing Kung fu Panda on the xbox, sometimes he will even stand up and jump a little cause he is so into the game.  He was pretty animated today...

...until they started pumping the methotrexate in, then he sat back in his chair and was a lot more calm.  He won't ever admit that he doesn't feel good, but I could tell today that it was affecting him, it was interesting to watch.  He recovered quickly however and is as lively as ever tonight. : )

On our way home!  he got a blanky and a lightning Mcqueen pillow pet from his hh nurse so he got to snuggle with them all the way there and back.  We are excited for this little 'break' before he starts taking daily pills.  ANC 900! : )  That means he was able to play with cousins a teeny bit during Christmas break.  WBC 2.3, RBC 3.58, HCT 30.6, PLTS 220

Thursday, December 22, 2011

HopeKids Cards

Today Tyson got a big envelope in the mail from HopeKids full of homemade Christmas and Birthday cards!  They were made just for him by a bunch of teenagers from the Pleasant Grove Seminary in Utah. Thank You!!  (if you are wondering what HopeKids is click on the word above, or look in my September posts) : )
Look at how creative and unique each card is!

And each one has its own personal message inside, so nice!

Merry White Christmas!!

Wednesday, December 21, 2011

Clinic and Birthday Celebrations

Happy Birthday Ty!  He's using his new birthday shaving set.

On our way to Primary Children's Dec 20th for our clinic appointment, no food today, we were thankful that he slept the last hour of the trip so he wouldn't have to think about being hungry.

The best distraction tool ever...worked again like a charm, he just a kept on playing while the nurse accessed his port

The sterile field of supplies ready to access, you can see the port needle in the middle with it's cover still on
Clinic was extra fun today!  Santa came and brought a little felt snowman full of candy.  Ty was super hungry cause by this time it was 1:00ish and he can't have food or drink before he is sedated.  We prayed at family prayer that morning that he would be brave and okay with not eating.  He really wanted to eat his candy but he didn't throw a fit or anything which was awesome!  He just held on tight to his candy bag and waited

Annie the therapydog came to visit, she is new and we love her cause she is super clean and soft and her owner is very dedicated.

Thumbs up to dad after Ty is all hooked up for sedation...but not sedated yet

And here's a super cool thumbs up to dad WHILE he is sedated.  This surprised us cause you just don't know how aware they are while they are on that stuff unless you've been on it yourself and we have never been on versed and ketamine.  Dad gave him a thumbs up and he gave one back.  That's his oncologist in the background, she is great.
Hugging his candy while he waits for the sedation to wear off.  As soon as he was coherent enough he ate it all!!  We were very surprised cause he usually won't eat much of anything the rest of the day after sedation and chemo. Sometimes he'll sip on pop but that's about it.  He also ate a couple of mini chocolate donuts that he picked out at the gas station on the way...and kept it all down, yay! : ) ...AND he asked me to make him some german pancakes when we got home that night at 9:00 and ate one of those too!!

Spiderman on the third floor, we went to see an inpatient cutie from Idaho in the ICS overflow on the third floor. (Isn't it sad that they have an overflow of immune compromised kids from the 4th floor to the 3rd? That's too many kids with cancer!!)
  We also got to see three other cancer cuties that are associated with our Utah moms facebook group in clinic, and dropped some legos by the house of one who just finished his bone marrow transplant.  It was fun to meet and chat with all of  them a little, it's a 'club' you would never wish to be a part of, but has turned into a support group that has kept us sane through all of this.  A mom who is a part of that group invited us to be a part of her son's birthday who lost his battle with cancer in June by doing acts of kindness.  I thought of her and her son often yesterday and we were happy to bring a couple of smiles to some cancer cuties in honor of him.  His name is Tanner and he would have turned 20 yesterday.

We had such a good day yesterday, I was reminded as I kneeled last night of how blessed we are in so many ways, and how great it is that God cares so much about each of us that he answered our prayer about Tyson this morning and helped him manage the hunger.  It seems like a small thing, but is pretty big to a 3 year old who wants some food and doesn't really understand why he can't have any.  My heart is so full today of gratitude for the goodness of God and the goodness of people who do things like dress up like santa and bring smiles to kids in hospitals, and for families who try to make a day that is so difficult and heartbreaking into a day of kindness for others. While its hard to understand the heartache and pain and unfairness of trajedy, it makes the good extra sweet, and for that I am so thankful.

 Tyson't ANC is 600! Yay for above 500! We will be keeping him home for a major part of the holiday season anyway, just to be safe, but this means he doesn't have to completely stay home. Weight 14.8 (32.6lbs) which is down a little from 15kg (33lbs) two weeks ago, that surprised us a little, but now that I think about it, he was sitting on the scale because he was asleep when we got there and I just kind of plopped him on it still asleep, maybe that had something to do with the weight. PLTS 264, HCT 34, WBC 2.5, RBC 3.87  Interim Maintenance 2, day 36
We got home pretty late so I was really thankful for the dinner brought in to my kids, thank you!!  And thank you for all of the support and love and prayers for Ty

Thursday, December 15, 2011

Tomorrow's chemo cancelled

This is probably a pretty boring post, but so be it.  We aren't going to PCMC tomorrow cause Ty's ANC is 500 boooo that's right on the border for neutropenic.  ANC is a calculation of white germ fighting cells and determines the best guess for how well your body can fight off infection.  Ty is feeling pretty good, and not fevering or anything and we have been so lucky so far cause the kids haven't brought home any sicknesses.  His ANC has been hovering in the 700 range (not stellar, 1500 is the bottom of normal, but good enough).  We decided to take advantage of that and had a combo birthday party on the 8th for Merin, Tyson, and Ryan who all have birthdays in December (I know what were we thinking!)  But we weren't sure what his ANC would be when his real birthday rolled around closer to Christmas.  It was lots of fun, I set up a card table for each kid with their own decorations.  Ty chose Buzz and Woody stuff and I did yellow and pink for Merin and Star Wars stuff for Ryan.  I have been pretty relaxed about stuff the last couple of weeks cause it has been such a relief to be above 500.  We have even ventured to the store, and went to a party at Randy's tumbling for about 1/2 hour.  Still with a mask on and lots of sanitizer, but it's been nice to not have to worry about every little germ, that my friends is exhausting!
We had some family over for the first time in months, but we still missed several of them due to illnesses...and so it was a small party but that's life right now...if you are sick or have been around someone ill you shouldn't be around someone with a low immune system, which seems like an easy concept but it is really a challenge because there are so many things that go around that are minor to normal healthy people but can really wreak havoc on a chemo kid, in fact we know of a little girl who is in intensive care on a respirator because she got a flulike virus and we are praying she can make it through but she is not doing well, if she lives she will probably be on oxygen the rest of her life because of the damage... because of the flu!  I know I go on and on about this topic but it seems scary when you are in the middle of it.  It just seems like a cruel irony that the 'medicine' used to treat cancer can lead to the death of the person it is treating!
Okay, enough of my ranting, I'll load some pictures on here of the birthday party and stuff.  It's been pretty low key around here only going to treatments every 10 days, it seems like forever before we head back to PCMC with such a big break!  And now we have an even bigger one!  Ty will probably retest blood on Monday for a possible Tuesday trip.  We'll see what the doc says tomorrow.

Reading stories tonight...see how his port site is kind of red?  He was accessed for his CBC right before this.  WBC 2.5, HCT 29.5, PLTS 313, ANC 475 which they round up to 500.  We are kind of stunned cause until about 9:00 tonight we were planning on going tomorrow, now we don't know what to do with ourselves





hand in mouth (cringe)  but see the hair?  He is already growing hair back cause the chemo he is on right now doesn't cause drastic hair loss like the ones he was on in September/Oct.  He's probably all done being bald. Sigh, I'm gonna miss that soft bald head. : )

Tuesday, December 6, 2011

Park City, Clinic today

So we went to Park City this weekend for a military reintengration into the family thing that the soldiers are required to do after they get home from a deployment.  It was super fun that we had to do it in Park City!  We went to a very nice resort and even though we sat in meetings all day it was a great weekend!  We brought Tyson with us, and when I saw how nice our 2 room suite was, I decided to go get the rest of the kids.  That way they could have some fun with us when we weren't in our meetings, and Tyson could play with them instead of sitting through long meetings.  The hotel we stayed at had top notch service, they were very friendly, and when they noticed Tyson they asked if their mascot could come visit him.

So Murdoch the Moose came to play with us in our room!  It was so much fun! Thank you Canyons Resort!

We stopped at the LDS church museum on the way home

We also went to Olive Garden, the one downtown that paid for the Utah moms of cancer kid's mom's night out. Yep, we think that is awesome.  And Ty loves their noodles with white sauce : )
We went to Temple Square in SLC to see the beautiful lights!

The reason for the Season of course!
Monday night I let the kids open their early Christmas jammies present

And the next morning (this morning) we headed to PCMC for Ty's Clinic appointment, we stopped for treats on the way

They were doing Christmas tree crafts in the waiting room, and Ty picked out a cool hat from the hat tree

I forgot to ask his height, but his weight was 15kg!  Yay! he gained a teeny bit!  WBC 1.8, PLTS 219, HCT 27.7 ANC 700.  With ANC 700 he didn't qualify for a higher dose of MTX.  Yay for same doses as last week! : )  he got vincristine too.

The game tvs were all being used, in fact all of the chairs in infusion were being used too so we sat at the little play table.  Ty played with some Star Wars toys, which was fitting since he kept his new Star Wars jammies on.  With no back poke it was a quick visit, (2 hours) and the chemo hasn't affected Ty much yet.  He even ate on the way home which is quite unusual after a dose of chemo.  We got home just in time for some great neighbors to bring over some yummy dinner, thank you!  And as always thank you for the babysitting, love, prayers, and concern for Tyson.  We are so blessed and doing great!! 
We went to festival of trees to see Brenna's choir sing.  They had a 'hope tree' that represented all of the different cancers.  Gold is for Childhood cancer, and Orange is for Leukemia.

Thursday, December 1, 2011

Short Ty update, St. Baldricks video

Getting ready for Christmas!!  We always LOVE something exciting and fun to look forward to!  Ty is feeling pretty good now, he didn't eat much those first couple days after treatment, but now he is eating good and loves helping me wrap presents while the big kids are at school.  His next appointment is Tuesday the 6th but it is count dependant so we'll see if he 'passes' on Monday.
 My second cousin's wife just emailed me a video of the St. Baldricks event.  It's so great when something cancer related makes us cry in a good way.  I am overwhelmed with gratitude. I can't say enough about this awesome group of people who SHAVED THEIR HEADS to raise money for childhood cancer.  They put together this fundraiser in a few short weeks, and their goal was to raise $10,000!  I am so excited to report they raised over $15,000!!!  That's a record amount for St. Baldricks events held in Utah!!  Way to go Rocky Mountain Dermatology!!  And THANK YOU for your generous donations of time and money and valuables that were raffled and auctioned.  Tyson is alive because of people like you, and your donations will help keep future cancer kids alive who didn't have a chance a few years ago.