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!!)

'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!  

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! : )

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!

Random stuff...fire, burpcan

Trying his best to stay awake even though he is soooo tired.  Monday night I picked up his antifungals from the pharmacy about noon so he got his dose late.  I gave him his next dose in the middle of the night cause that's 12 hours later, and his nurse was coming at noonish the next day to draw a blood level of how much voriconazole (antifungal) he had in his system.  That blood level needed to be drawn about 12 hours after his dose...so that all worked out perfect...except that he woke up and couldn't go back to sleep for the rest of the night. I put him in our bed so I could get some sleep...didn't happen...and I finally took him upstairs about 6am and turned on the tv for him.   Thursday night (picture is thurs) he told me all about how there was a ghost in our room that night(monday), told me all about where the ghost was and what he did, and how the cups on the windowsill were moving around like star wars and he laid in bed for a couple of hours thinking about it before he finally fell asleep.   Not sure what that was all about, hallucinations and change in vision is one of the rare side effects of voriconazole, but since that seems to be an isolated incident...we'll never know what was up.

Thursday night is also significant because there was a giant fire in our home town, 66 homes were damaged, my sister's house is at the tippy top of Johnny Creek so a bunch of people were up there trying to clear brush around their home and putting sprinklers on the roof in case the fire spread that far.

The view of the fire from their house...luckily the wind died down and the fire stopped spreading significantly so it never reached their house.  We are sad for the people who did lose their homes.  There were also bulldozers up there creating a fire break.  We live at the other end of town so although we could see the smoke, it wasn't blowing our direction.  We went to bed with the windows open to let in some cool air.  The wind must have changed in the night cause at about 2am we suddenly had a very strong smoke smell in our house and Tyson woke up with the worst croupy cough I've ever heard.  He coughed and cried for quite a while.  We frantically shut all of the windows and turned on the A/C and I turned on a hot shower to get some moisture in the air.  He calmed down enough to sleep but continued the croup sounding cough the rest of the night.  Friday he still had a cough, but it wasn't croupy anymore, and we called to see if he needed to see someone because of the stuff already on his lungs, we weren't sure if his reaction to the smoke was something we needed to be concerned about.  The doc wasn't concerned and said it should clear up when the smoke does...which it did. 

He threw up Friday morning (his antifungals make him do that occasionally) but it was in the iffy timeframe for whether or not I needed to redose him or if his body had already absorbed his first dose...so I didn't redose.  He had a fun day the rest of the day, like any other kid.  He played slip-n-slide at a cousin's house, had cotton candy, and rode the scooter down the driveway several times at Grandma's house while dad helped build a landscape wall.

 He also watched his brother guzzle a soda and let out a giant burp.  He thought that was fantastic and spent the rest of the evening drinking from a 'burpcan' and trying to burp.

Still having very crabby mornings...we are having a steroidesque morning today, he asked for frosted flakes, I said we were out and he's been crying ever since (going on 45 minutes).  He's sitting under the piano bench right now crying and yelling 'I don't want mommy'. I'm ignoring him of course, we don't pander to temper tantrums around here, I told him to let me know when he decided what other kind of cereal he wants and left it at that.  He isn't normally the temper-tantrum type guy, so I am guessing that he must still feel the effects of the tiny chemo pill he gets the night before in the morning or maybe the voriconazole, who knows? he sleeps 12 hours so it's not that, maybe he's just being a 4 year old...he usually wakes up crying and fussy and then after a while perks up and is a normal happy kid the rest of the day.  We like normal and happy. : )

Summer Fun, CBC

We decided to do our 'camping trip' at Cherry Hill in Utah this year.  Cherry Hill is a waterpark/funcenter and has camping spots that are grassy.  They keep really clean restrooms and their pools have never tested positive for crypto.  We had to go to Utah last weekend to pick up Brenna from teen camp at Camp Hobe so we decided to make that our camping trip. 

We knew Ty's ANC probably wasn't still 5000, but we were guessing that with the low dose of chemo he is on he wasn't neutropenic either so we weren't too overly concerned about stuff, but grateful for cleanliness and the absence of dirt. 

Ty got adventurous and decided he was old enough for cardiac canyon...he decided otherwise after they went under the second waterfall

And the all-time favorite for everyone...the dragonslides of course!

I took Merin and Ty with me to pick up Brenna on Friday afternoon to give them a break from the sun and a nap (it's about an hour to Camp Hobe from Kaysville) and that worked out really well.  

They have a pretty cool mini-golf course too which rounded off our perfect Friday of fun.  (not sure why Brenna is in the bush...perhaps she likes prickles and spiders)
We slept in a tent Thursday night, did Cherry Hill on Friday, slept in a tent again, and then Saturday a few of us were burned (yep, I accidently got the 'water resistant' sunscreen instead of the 'waterproof', we found out the hard way that there is a difference).  Luckily, I used the 'waterproof' one on Ty and I used it often so he didn't get anymore sunburns. Other than lots of sunscreen, keeping track of his meds, and his strange food preferences, he was like a normal kid and had a ton of fun!

We decided to go to Boondocks in Kaysville Saturday instead of the waterpark again. To our great pleasure, not only is Boondocks pretty new, it is also very clean, in fact there was a person cleaning stuff the entire time we were there. 

On the way home we were so proud of ourselves for doing a 'camping trip' that didn't include dirt or dirty water...and right when I was commenting about it Tyson piped up from the back seat, "When are we going to do a real camping trip, you know where there is a fire and you roast marshmallows?"  ha ha!  I guess we didn't really get away with it!  I guess we aren't really the 'city camping' type.  We need pine trees, a fire, dirt, and a river, but that's okay, his immune system will be more steady soon. (Not sure what 'soon' means, your guess is as good as ours).

His face, hands, back of legs, and back of neck are still peeling a little and recovering from their initial sunburns, but improving.  His lips look a little better too, the top lip looks pretty normal, and the bottom is a little chapped, but not as bad as it has been.  He has quite the aversion to stuff on his lips...everytime we have to put cream on his face/lips it is a huge deal, I have to hold him down and he cries for quite a while after.  I hate it.
For some reason he is super crabby in the mornings but usually perks up after a while and plays all day like anybody else his age.  I think the voriconazole that he is on makes him feel a little yucky.  He had a blood draw yesterday, he was pretty nervous since it has been a while.  They took a voriconazole (antifungal) level and CBC.  We haven't heard back about the vori level yet, but his CBC looked great!  WBC 4.3, HCT 37.3, PLTS 420, ANC 2200.  My guess is that if he keeps that up they will raise his chemo pill dosage a little next time we go since they are trying to keep his ANC around 1000 I think.  We'll see how things go in the next few days.  He goes back to PCMC on July 10 for a back poke and some vincristine.
Thank you for the prayers, concern, help, and donations.  We are so blessed and spoiled and want to do everything we can to pay it forward.