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

Friday, December 28, 2012

Clinic today

 Backing up a little bit cause I never got a chance to report on birthday and Christmas!  He had a great birthday, we did a combo party with his December birthday siblings Ryan and Merin so this is his 'section'.  He wanted a batman birthday.  It is hard to believe he is 5!!
 Like I said on the last post the night of his birthday we ended up in the hospital with fever.  He didn't feel well the next day and slept for most of the afternoon. Probably a combo of the steroids he was on for the croup and just feeling ill in general.
 He did perk up enough to catch a cookie in his mouth doing the minute to win it game at a family Christmas party.  He has the pale face and red around the eyes that he always gets when he is on steroids.
He felt a little better each day and we got to hang out with family on Christmas Eve.
We had a fun Christmas morning, Santa brought him what he wanted and then some.  He still has a cough and not as much energy as his cousins and siblings do, but he's hangin in there.
 After we opened presents we went with a few cousins and performed a little Christmas music program at a retirement home.  It was a great experience. We are glad Ty's Aunt Melissa put it together and invited us to come.  It was also a miracle that Ty didn't cough once while we were there.
 And so we get to clinic today.  I'm sure you can't guess what they are doing in this picture..We got to meet and say hi to a couple of 'cancer buddies' today that we have followed a little bit online.  Both of them are bone cancer survivors and have had an amputation of a lower leg.  Tyson was very interested in their 'Iron man' prosthetics.  They are real heroes.  I also got to chat briefly with a neighbor who's daughter has been there for weeks recovering from brain surgery.  We were happy to see that they were packing to go home.
It was a back poke day (chemo injected into the spine) so he is getting ready for sedation here
 And waking up from sedation.  It is amazing how routine this has become.
 There was a special treat at Primary Chilren's today, Jenny Oaks Baker and her children put on a musical program.  We stopped on our way out to listen for a few in the jampacked 3rd floor hallway.  Elder Oaks was there too.
 No fountain to throw coins in...for some reason Tyson thinks he needs to tromp through every bit of snow he encounters.  Since he was on dad's shoulders he felt like dad should tromp through it instead.
 We brought the kids with us so we could go see the lights on Temple Square. It was spectacular of course!  We love to see the Temple!
We also used our Olive Garden gift card that we got for Christmas from a very generous Grandma and Grandpa.  Thank you!
So Ty stays on same doses of oral chemo for now. (1 MTX Thursdays and 1/2 6mp 4 days a week)  His counts are pretty good but his liver something levels are a little high so they are going to keep an eye on that.  They told us not to worry about it but to call if he turns yellow. We thought that was a little funny afterward...Anyway here are his counts, oh and he weighed 17.1kg, same as last month.  and he grew a teeny tiny to 99.2cm.  ANC 1800, WBC 3.6, RBC 3.61, HCT 33.3, ALT 201 (normal range 10-25), AST 96 (normal range 15-50).  I guess it is pretty common for his type of chemo to irritate the liver...or whatever it is doing to it so they will just keep checking those levels when we go in.
Thanks for checking in!  Happy New Year!

Saturday, December 22, 2012

Little ER Jaunt

Ty had a great birthday!  He is 5!!!!  We did a combo birthday party a couple of weeks ago for all of our December birthday kids so on his birthday his dad and grandpa took him and Ryan to Bamboo Garden and Outer Limits for some birthday fun. 
Brady put Ty's blanket back on him last night as we were headed to bed and he felt hot so we took his temp.  101.4.  Darn.  He was breathing heavy and had started a croupy cough after he went to bed so we knew it was probably just from that but we thought we should probably stay on the safe side and call Primary Children's to see what we should do. 
Of course they said to take him in cause any time you have fever with a central line you have to go see what his counts are and do blood cultures.  We got there at 12:15 so it officially wasn't Tyson's birthday anymore. 
We snuggled and snoozed off and on and they gave him some steroids for the croup and some tylenol for the fever.  Luckily his counts were great and we got to go home about 4:30 this morning.  I didn't get them all, but his ANC is 2300!  That is good news right before Christmas!  If it stays that high I imagine they will up his chemo pill dose a little when we go next week so we will see.  We are just glad his ANC is great and we don't have to stay there for a few days.  Merry Christmas!

Wednesday, December 19, 2012

Heartbreak

Ty is doing great!  I'm just so sad for some of our 'cancer buddies' today who thought they were clear and cancer free only to find out they are yet again fighting, one of them fighting A.L.L. for the third time.  I am heartbroken for them.
I am speaking at a Relief Society function tonight about our experiences with Ty and so a lot is fresh on my mind as I think about these sweet little kids who yet again have to suffer so much and who's parents hearts are breaking.  I never realized how blessed I am to have a dad who taught me about suffering long before I experienced Ty's diagnosis while my hubby was in Iraq. I feel guilty that everyone didn't have that and I feel like I should share with you what he taught me.
 He said two things that have always stuck with me and have come into my mind when I am at my lowest: "Pain comes, Misery is optional" and never ask the Lord "why" always ask "what now".  The 'why' is already answered, cause we are on the earth to suffer, to be tested, and to still find the joy. We are taught about Jesus in a way that is too simple, His atonement reaches much farther than the ability to repent when you steal a candy bar.  He suffered ALL that I and those sweet children suffer, He knows my pain personally.  He won't take away our pain and suffering, but if we are willing to get on our knees and ask He will take from us anything that we can't handle.  I try to keep control of things and beg and beg the Lord to keep my husband alive when he's at war and beg and beg to keep Tyson alive and make him not relapse, but I learn over and over again that I can't really pray for that, I have to give that up and say in my prayers please give me the peace I need and help us be okay no matter what happens.  Cause in reality husbands and daddys do die at war, children do die of cancer and suffer so so much and it is a part of life. It makes me think of the widow who had to travel on foot with her five kids and buried each one of them on her journey and stayed faithful, of my friend who  just had her 12th (I think) miscarriage and almost died of it while her husband is layed off and her 7 kids have had all sorts of serious medical problems including one who almost died because a girl at school was mad at her and slammed her head in a metal door, she feels broken and spent and yet she remains faithful, of Joseph Smith when they poured hot tar on him and his babies died from exposure, and he spent many days in a dark cold jail missing his family so much and when he cried out to the Lord, the Lord replied in D&C 122 verses 5-9:
"5 If thou art called to pass through atribulation; if thou art in perils among false brethren; if thou art in bperils among robbers; if thou art in perils by land or by sea;
6 If thou art aaccused with all manner of false accusations; if thine enemies fall upon thee; if they tear thee from the society of thy father and mother and brethren and sisters; and if with a drawn sword thine enemies tear thee from the bosom of thy wife, and of thine offspring, and thine elder son, although but six years of age, shall cling to thy garments, and shall say, My father, my father, why can’t you stay with us? O, my father, what are the men going to do with you? and if then he shall be thrust from thee by the sword, and thou be dragged to bprison, and thine enemies prowl around thee like cwolves for the blood of the lamb;
7 And if thou shouldst be cast into the apit, or into the hands of murderers, and the sentence of death passed upon thee; if thou be cast into the bdeep; if the billowing surge conspire against thee; if fierce winds become thine enemy; if the heavens gather blackness, and all the elements combine to chedge up the way; and above all, if the very jaws of dhell shall gape open the mouth wide after thee, know thou, my son, that all these things shall give thee eexperience, and shall be for thy good. 
8 The aSon of Man hath bdescended below them all. Art thou greater than he?
9 Therefore, ahold on thy way, and the priesthood shall bremain with thee; for their cbounds are set, they cannot pass. Thy ddays are known, and thy years shall not be numbered less; therefore, efear not what man can do, for God shall be with you forever and ever."
 
 When we suffer without getting on our knees we suffer more than we can bear.  God knows you personally, loves you, and ALWAYS wants you to turn to him no matter how angry, unbelieving, sad, broken, or even how happy you are.  Going to church is nice and important but it cannot save you, the gospel of Jesus Christ happens inside you, in your heart.  I can do hard things, but I need Jesus to get through them.  If I turn to God I can handle anything this world throws at me. The End.
 

Wednesday, December 12, 2012

CBC, Make-A-Wish, & The Truth 365 Documentary

Ty got a CBC Monday night to see how his numbers are since they adjusted his chemo pill dosage at his last appointment.  His ANC is going up a little bit. ANC 700, WBC 2.5, HCT 35.5, PLT 343  I haven't heard from clinic yet so we don't know if they want his doses to continue at the same level or not but I'm assuming they'll just keep it the same.
 He did pretty good with his steroid pulse this time.  I didn't really see much difference in him other than reacting to things with more emotion than usual.  His brother was on a 5 day stint of steroids at the same time for asthma.  For some reason they gave him a liquid which tasted horrible and he was a really good sport when Tyson wanted to administer it. Ty loves it when someone else has to do something medicalish...he was happy to watch all of us except him get our flu shots last week. (He got his at the same time his new port went in so he could get it while he was 'under')
Some wish granters from Make-A-Wish stopped by with gifts for all of the kids last Thursday!!  Tyson got to declare his wish to go to meet Mater and Buzz & Woody and go to Disney World and I filled out so much paperwork that I forgot to take a picture.  The kids (okay all of us) are very excited.  We went to high school with his wish granters and found out that their son is an 8 year survivor of A.L.L.!  Make-A-Wish Idaho posted Ty's picture and wish on their facebook page a couple of days ago. 
Making faces at dad...Merry Christmas!  His next appointment is after Christmas so if everything continues to go awesome we won't update until then.  Thanks for checking in!

 I'm going to embed a new documentary that just came out on Childhood Cancer just in case you are interested in watching it.
(I know I know I talk about the lack of funding and horrors of childhood cancer waaaayyyy too much, I just dont want to miss anybody, especially people who donate money to major cancer fundraisers thinking they are helping children when they aren't.  I was completely clueless before Ty was diagnosed so I assume most everyone else is too)
It is a true documentary, as in an hour long so go get some popcorn.  I share it in the hopes that everybody will get a glimpse of what we have seen and will help us be a voice for these kids.  It gives you some simple steps to take to help be a voice even now when funds for everyone is very limited.