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, July 25, 2012

Uneventful...the way we like it

Does this look like a kid who is enjoying his summer or what?  The red on his forehead is just dried blood from a scab on his head that scraped off somehow...he didn't want me to wash it off.  He is still having a great summer...
'helping' in the garden which usually means eating the peas or jumping on the tramp while we weed...
Throwing candy in the Pioneer Day parade with the other military families...
 and helping dad build a castle playhouse in the backyard. 
Ty is still on the same meds, 25% of his normal 6mp chemo dose, and 10% of his normal MTX dose and then the antifungal etc.  He still has a cough, he has had it so long I don't even remember when it started, I think the middle of June sometime...but it doesn't seem to slow him down.
The antifungal makes his skin red, especially his face and hands, and makes him burn really easy in the sun...we can't wait until he is off of that stuff, really hoping for clear lung scans at his appt in August so we can be rid of voriconazole! He woke up feeling crappy a couple of days ago, said he was hungry but just laid on the bench at the table instead of eating. I gave him some zofran, we snuggled for a while and then he perked up and went to play.  It is amazing how well he is doing and how little we think of all things cancer now.  What a relief!  The blog posts will (hopefully) be much more boring from here on out...here's to the next two years of treatment being super uneventful!! Yahooo!!  (crossing fingers!!)

Monday, July 16, 2012

'Real Camping' at Bryce Canyon

 After spending the first 4 months of maintenance phase in and out of the hospital with neutropenic fevers, infections, port removal, lip biopsy, and lung fungus we never imagined our summer would turn out so normalish!  We went to Bryce Canyon for a family reunion and Ty had a great time!  We were expecting our summer to be a lot like last year, staying home from everything and being super careful... but we were wrong!  Ty is still on meds of course, chemo pills, antifungal, colace, and dapsone...he still has a red face from the antifungal, and we have to sunscreen him up like crazy...we still have to be careful about germs and stuff, but not freakishly careful like before...all of that is just a normal part of his life now and none of it seems to get in his way.  We had such a great time at Bryce Canyon we didn't think twice about cancer stuff. 
 Looking over Bryce Canyon with his two other 4 year old cousins...
 He doesn't like the bright sun, it hurts his eyes...
Making his own sunglasses so he can say cheese for the camera
 We did a group tour, our family filled up the whole bus so we had the tour guide all to ourselves.  He was tipped hansomely for being so patient and good natured even though there were 30 kids and 13 adults on his bus : )
 Even though we stayed in a motel across the street from the campground, Ty got to do his 'real camping' of roasting a marshmallow on the fire.  The fire was so hot he tried to hide from it behind a cousin while he roasted his marshmallow.
 Another cousin came to the rescue and helped him roast it even though it was hot...
 Finally the perfect marshmallow!
 And the perfect s'more
 Could a kid be any happier than when his hands are stuck together with marshmallow?
 We had to teach the cousins our Camp Hobe jellyfish song
Ty's 3 year old cousin (you might recognize him if you've seen the movie 17 Miracles) is now a hair taller than him, I looked up his height and weight percentages as they compare to other kids his age...according to the calculator I used, Ty is at less than the 3rd percentile for height...but he is in the 20th percentile for weight, yay!  I'm glad his weight is at least on the charts.  As I was measuring Ty's height while he was alseep in bed just now, making Brady stretch his leg out so we could get an accurate measurement Brady called me obsessed...I have no idea what he is talking about, every mom measures their kids in their sleep right? ; )
Like I said in the post before this one, we finally feel like we are in maintenance, where Ty still takes immunosuppressants to prevent relapse of the Leukemia but his life is back to normal for the most part.  We are so thankful he is doing so well and we hope it stays that way! 
Thank you so much for the prayers, concern, dinners, luminaries and cancer walks in his honor, and donations to the causes that we care so much about.  Thank you so much to those of you who have joined our team and for those of you who haven't signed up yet but are planning to, it will be an event you won't want to miss...it is even worth a trip to Salt Lake to be there so I hope to see hundreds of you there!  Also, if you have lost a child to cancer and you are planning to attend, let me know, they let go of a white balloon in honor of each child who lost the battle and I want to make sure they have a balloon for you if you are planning to be there.  Thanks!  

Tuesday, July 10, 2012

Clinic Today

 Ty watched Popeye on the way to PCMC this morning, he didn't want to stop watching, so we brought the DVD player in with us
 He weighed 15.8...what the?  That's almost 35 pounds, two pounds less than he weighed at diagnosis over a year ago.  I need to get some fat on those bones!
 The versed made him giggly today, he usually fights going to 'sleep' but today he thought it was funny and laughed at whatever the nurse said, which made the rest of us giggle too.
 He even cracked a smile for me while he was coming out of it. 
 The fishy wand was very mesmerizing as he lay there waking up.  He has to lie flat for 1/2 hour while the poke in his spine heals.
 Oops I should have rotated the picture, I took way too many pictures of course, that's just how I roll.  He's getting his vincristine and otter pop while dad sets up 'Meet the Robinsons' on the gamecube.
 He played for 1/2 hour more while he recovered from sedation...and got a new blanky.
 He likes to ride dad's shoulders at the hospital, it's a good place for him cause he can't touch anything...and they play a game of dodge the signs that are hanging down from the ceiling.
 Waiting for the drugs from the pharmacy, they have a cool train/carnival thing.
 He picked a big pink cookie from the vending machine and ate it outside while mom waited at the pharmacy
He managed to get a little DS gaming in before he fell asleep, he always sleeps on the way home after a sedation day.  It was a normal clinic day, we love Ty's doc and nurses they are so good to him, it is kind of strange that he looks forward to his visits to horsey doctor with happy anticipation.
 He stays on the chemo pill dosage that he is on, (yay!) his counts were right where they want them to be I think, and still no steroids (yay!).  His oncologist also said the reunion should be fine so off we go to party! We are loving maintenance now!  We hope it stays that way! CBC:  WBC 2.9, RBC 4.28, HCT 37.8, PLTS 295, ANC 1100
Thank you for dinner!! 
PS we got the puke smell out of the van...yay for Odoban, thanks for the tip Devri! : )

Sunday, July 8, 2012

Summer Fun!

I haven't updated the blog lately because life seems very uncancerish right now...we don't really have anything new to report except lots of fun summer activities!
Do I dare admit we went to the beach?  I put gloves on Tyson's hands and feet, we used about a thousand wipes keeping the sand off of the rest of him but I think despite my over-mothering he had a great time.
 Last summer he begged and begged to go ride in Grandpa's boat to no avail, we knew it just wasn't even possible.  Finally!  Not only did he get a boat ride...
We ventured a very slow tube ride too!
 Ty with his 'cancer buddy' Cooper.  The 4th of July we got together with our local cancer fighting cuties and threw candy in the parade to spread the word about the Tenley Foundation. 
Some of the moms of local cancer fighters...we love to hate cancer together.
I forgot to make posters about the Tenley Foundation so the people on our side didn't know what our float was for but that was okay, we had fun being patriotic anyway. 
 As I sat in the back of the truck that night watching the fireworks I looked around at our kids and thought how simple and normal that we were all sitting there together, it might even seem a bit mundane.  Then it occurred to me what a miracle it was that we were all sitting there together.  One year ago Brady was celebrating the 4th in Iraq... I was in the hospital with Tyson who had a knee infection and no immune system and I was on the phone with my 8 year old Ryan who was watching the fireworks and crying that I wasn't there with them.  I watched my kids as much as I watched the fireworks this year, they snuggled in their blankies and didn't seem to have a care in the world, maybe mundane isn't quite the right word, they were content, maybe not even realizing it or thinking about how things were last year, they were just content and happy.  I remember thinking last year, if Brady makes it home alive and we all get to be together again I will be the happiest person in the world!  I am so quick to forget how things were and take for granted how great things are now.  It was great to sit back and think about all of that and realize how blessed I am to live where we live and have what I have.  Sometimes I feel guilty that we are so blessed.
Tank wars!!!  We had a very fun very hot! family reunion yesterday. (You can see Ty standing on Brady's shoes cause the pavement is too hot)
Ty threw up on the way to the reunion, so I dropped everyone off and spent a while cleaning it up out of the car...did you know it's hard to get puke smell out?  Any suggestions?  He had a great day though making cotton candy and slushies, fighting like a pirate, playing in the water, and having hot dogs without the hot dog.  (he just likes the bun with ketchup) 
Last summer we missed most get togethers and reunions so it has been so much fun this year to have a 'normal' summer.  I find myself worrying about fevers, germs, and hospital stays less, I even unpacked the clothes from the hospital 'to go' bag, though the hospital activity bag and toiletries still ride in the van with us wherever we go.  I have everything we will need next time he ends up staying in the hospital in that bag (including Lucky Charms and his very awesome 'I Spy' blanket)  so that means that now that I am totally prepared we won't end up having to go right?  So far so good, the last two times he has fevered he has had a high enough ANC to be able to go home and it has been over 3 weeks since he fevered!  It is strange to be normal, its almost like we are holding our breath waiting for the next bad thing to happen but the longer we go with nothing bad happening the less we 'hold our breath'. 
We go to his monthly Primary Children's appointment on Tuesday.  He won't be getting a CT scan of his lungs that we know of, so I think that means he will be on his voriconazole (antifungal) at least until his August appointment.  Darn fungus is hard to get rid of!  We got the statements back from insurance for what they paid (we get some kind of medical statement in the mail, usually multiple ones almost every day) for the voriconazole...guess how much that stuff is...about $900 a bottle!!  One bottle lasts Tyson about 6 days because he is taking 240 milligrams twice a day, we just have a copay because our insurance is awesome and our case manager who deals with treatments associated with clinical trials has been very good...we are very very very very very very thankful for good insurance!
Anyway..his appointment should be a normal one with an IV (yes pokie prize is ready), a methotrexate back poke (he gets sedated for that), vincristine, and a CBC.  I'm curious as to what his blood counts are and what that will mean in regards to his chemo pills dosage. We will find out Tuesday!  I'm guessing they will be holding off on the steroids again since fungus likes steroids.  We will also be finding out that day if it will be safe to head to another family reunion.  We have made plans so that it will work out either way, hoping to go, but if some of us need to stay home to keep Tyson safe we are okay with that too.  We'll see how things go.
Whew! Thanks for reading! That was a long one!
Praying for Timmie, Boo, Lillie, Millie, Tenley, and so many others.  We are so thankful there are great doctors and nurses and researchers out there trying to help these kids!