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. 

Camp Hobe Day 2

 All ready for Camp Hobe day 2!

 I got to sneak a picture when I went up to give him his meds at noon.  Usually the nurses or doctor does the meds but I forgot to bring it this day so I just went back up there when it was time.

At the end of camp we all sing a campfire song they learned. 

Today it was 'a jellyfish a jellyfish a jellyfish fish'

They got to do the zipline, if they were scared, a counselor rode it with them

...crafts, games, songs, stories, swimming, pet therapy, and professional pictures. 

Camp Hobe has the best volunteers in the world!  Many of them work at Primary Children's and it is so great of them to use their vacation time for Camp Hobe!  It really is touching to see so many people willing to make life fun for these kids and their siblings.  My kids talk about it and look forward to it all year, they are already talking about what they are going to do next year!

Ty was worn out, but had so much fun.  He is feeling great right now!  He really hates it when I put cream on his face and lips but other than that, so far so good.  We will find out soon if he is doing a CT at his next appointment in July to see if the lungs are clear yet, and then we will have a better idea of when he gets a port put back in.  Not sure when his next CBC is.

For now we are just enjoying the summer and trying to be as 'normal' as possible!
* I have to add a couple of things that Ty said today.  He has been super fussy today, trying to think of things to be sad about. It is almost like when he is on steroids.
Everything he said was in a super sad voice:
He was asking if we could move to a hotel, he was super bummed that we weren't going back to the hotel after camp hobe. I was talking to the kids about packing for our cherry hill camping trip and he said, 'are we getting a trailer?'  mom: no we are going to sleep in a tent. Ty: 'you said in a couple of days we were going to buy a trailer'.  mom: 'no in a couple of years when you are done with chemos'.  Ty: 'wait what is a trailer anyways?'  I explained, then he said, 'when my chemos are all gone?' I said yes when your leukemias are all gone. Ty: (still a very sad voice) 'Ryan said I got sick because I got white cells in me.' mom: 'well, your white cells made leukemias and that's how you got sick.' Ty: 'well Ryan said my white cells made me sick' mom: 'do you know what white cells are?' Ty: no. mom: 'white cells tell us if your numbers are high or low' Ty: (now a little mad) 'well mom you didn't even feel me today!' (he means I didn't feel for a fever)  Not sure why he is so grouchy today...he is a little coughy and sniffly, but he isn't fevering or anything, and his counts should be okay.  Maybe he's just being 4!

Camp Hobe Day One

 Ty got to go to his day camp!  I think he had a lot of fun cause he was pretty tired when I picked him up.  We were excited to see his awesome oncologist there as one of the medical volunteers.  They have nurses and a doc there to help keep the kiddos safe since many of them are still dealing with cancer and the after effects.  When I picked up Tyson she said she tried to convince him to drink some gatorade cause he looked hot.  From the sound of it he did some rolling around on the floor trying to avoid getting a drink.  Funny boy, I don't know why he doesn't like to get drinks.

 He found some more energy when he saw the indoor pool at the hotel.  We swam for a while, then he had some Lucky Charms.  We went to dinner and he ate a chicken breast, half of Merin's broccoli, and the rest of Brooke's fettucine alfredo.  Then tonight right before he fell asleep he had a bowl of frosted miniwheats.  I haven't seen him eat that much in a long time.  He must have used a lot of energy today!  He is a little red tonight, even though I know they used a lot of sunscreen on him at camp.  It seems like you can never use enough. 

 Luckily I brought the aloe vera, he was crying after his bath that his legs hurt, they aren't too red, but they were hurting. 

 And when I picked him up from camp his hands had peeled just like a sunburn.  I'm thinking that night that his face and hands turned really red his little bike ride that day must have gotten him sunburned.  The voriconazole makes him extra sensitive to the sun...I'm guessing that is what happened...the redness on his face doesn't seem like a sunburn, but maybe it is from too much sun too? 

His face is pretty red tonight too, his skin has been so dry and his lips are peeling again of course...when are they ever not peeling?  I've been using the cream they gave us when he had that giant scab on his lip and it helps a little, at least it doesn't inflame his poor lips like chapstick does.  I've been using the cream on his red face and hands too, it seems to help.

That is probably way too many details...so I'll just say we had a lot of fun today!  Tyson didn't even mind that we were dropping him off, he said bye and off he went with his group.  We met some other cancer moms (and a couple of dads) at the park and had fun laughing about steroids and lots of other stuff.  Hopefully he can get enough sleep tonight to have enough energy for tomorrow's day camp.  We are so thankful he is well enough to go!

Mike finished his 435 miles yesterday!! We wish so much that we could have been there to cheer for him but we had some other obligations.  It was fun to see some pictures and help update his blog.www.mikesextramile.blogspot.com Thank you to everyone who followed his journey and donated to the Tenley Foundation!!  Your support helps these families so much!!

Doing Great!!

You wouldn't even know if you looked at him today that he was feverish and sick yesterday, he is back to normal!

 We went to a follow-up appointment this morning and he got another CBC, everything looks good and now that I talked it through with the Dr. Jensen I feel much better about giving him the acyclovir even though he most likely doesn't need it.  ANC 4900, WBC 7.2, RBC 4.18, HCT 37.6, PLTS 233, segs 69%, bands %1, lymph 25%. Everything is closer to normal than it was yesterday. : )  We went to Fred Meyer and found fruit chillers for his pokie prize, he has been asking about them ever since he tasted some at horsey doctor last time we were inpatient there.  He is now anxiously waiting for them to freeze.

 He didn't really want to leave the hospital yesterday, he was perfectly content to watch tv and play gamecube...they are so good to him at the peds unit here and yesterday was no exception.  The fact that he likes it there is a good thing.  His nurse even had her daughter hunt down some starburst for him for his pokie prize!  We really appreciate the care he gets there.
He didn't eat all day and slept the rest of the afternoon. His temp stayed in the 100.6 range, technically not a fever.  When he woke up at 8pm and I gave him his meds he immediately threw them back up, but kept them down the second time we tried.  (not tummy flu, the voriconazole just does that to him sometimes).  I made him a chocolate milkshake spiked with spinach (sshhhhhh) and he ate a pbj right before he went to bed. When he finally went to sleep at midnight his temp was totally normal.

The little blisters that were on his hand yesterday are now just little scabs.  He has had a couple of doses of vori since and though his hands are still red and irritated in spots, he hasn't done the whole red face red hands thing like he was.  That is a good thing, and the doctor isn't worried about the voriconazole.  He suggested some moisturizer for the red spots since they look dry and irritated but other than that isn't concerned.  He gave him the clear to go to Camp Hobe. Yay!  So if we can all stay healthy for the next three days things will work out as planned. crossing fingers.  If he does seem sick at all we won't take him of course cause we would never risk getting another cancer friend sick, and there will be a lot of cancer friends there, but right now we are good!
Mike will be on the news tonight!!  Make sure you watch KPVI Channel 6 tonight, I think our friend Boo will be on too, and our friend Tenley from the Tenley Foundation. Thank You Channel 6!

Fever

Last night about an hour after Ty took his 1/2 6mp (chemo pill) and his voriconazole his hands and face turned red and he started crying that his bum hurt which has a lovely rash on it.  His right hand has little blisters on it.  I'm guessing that the giant amount of voriconazole he is on is starting to get to him.   He seemed okay though and wasn't fevering so we let him go to sleep and went to bed.

This morning he woke up with a fever hanging around 102 so we called oncology at PCMC and they told us to go to the hospital. We are hope hope hoping that his ANC is high enough that we don't have to stay here.  Booooo we are really going to be disappointed if our Camp Hobe and Cherry Hill plans don't work out...but it comes with the territory so all we can do is hope.  Ty has been so excited about Cherry Hill that he has been carrying his swimming suit around the house with him asking if it is time to go yet.  Of course all of that is hinging on what this CBC says.  We'll update when we get the results.

In the mean time Ty is playing robots.  He actually likes going to the hospital now, when we tell him not to do something gross cause it might make him sick and he'll have to go to the hospital he doesn't care cause he likes coming.  That used to be good leverage to keep him out of the dirt, sand, etc etc.
Update...it looks like we might not have to stay!! Yay!  The preliminary CBC results show a high white count which means whatever is making him fever his body is trying to fight it.  He'll probably get a dose of some kind of antibiotic and we will go home home home.  Yippee! 

This is what the blisters look like on his hand, just the little patch, the two top ones are just scabs from something.  I guess they are trying to decide whether or not to put him on acyclovir (antiviral) because of those blisters.  They aren't putting him on antibiotics, his ANC is way high which means his body is fighting whatever it is.  I think the blisters are just a side effect from the voriconazole...but what do I know. 

So we are probably going home, waiting to hear back from Primary Children's on the acyclovir question and then we are probably out of here.

Counts for today: ANC 9800, nope that is not a typo, WBC 11.3, RBC 4.41, HCT 37.8, PLTS 189

So I know I'm no doc, but his lymphocytes are low at 5, they should be 30-60%, and his segs are 85, they should be 25-55%.  So doesn't that mean he is fighting a bacterial infection, not a virus? segs are neutrophils which generally speaking fight infection, and lymphocytes work on viruses.  I know its probably a lot more complicated than that but it just seems weird that they would put him on acyclovir.  I've never seen his ANC go that high, I think it was like 5000 when he had the strep in his blood and other than that it hasn't gone above 1800.  Sigh. 

Sometimes I wish I had gone to medical school. 

Mike is on his way to Arco!  Go Mike! We are praying for you!

Clinic today, CT, Camp Hobe, Hogle Zoo

We made our trip to Utah a two day affair this time so we could drop Brooke and Ryan off at Camp Hobe kids week.  LOVE!!!  We dropped them off in the morning and spent the rest of the day with just our littles at Hogle Zoo.  (Brenna is in Vegas with some cousins)

Mom and dad liked the bird show the best...

The kids even got to feed the bird donations...  But the kids liked 

 The carousel...

 The giant metal elephant that squirts water...

 and the train ride the best.  Ty got lots of sunscreen that day...and lots of hand sanitizer, but other than that it was a fun, normal day.  I don't think we even thought of the 'c' word very much.

 I don't think Thor and Hulk usually duke it out with each other...but I haven't seen Avengers yet so what do I know?  The blur in Ty's hand is a thor hammer.  We stayed the night with cousins so we could go to Ty's appointment the next morning.  My sister watched the girls for us...thank you!

 Clinic was normalish except that Ty's doc is out of town.  He got a CT first and then we headed up to clinic.  They said the spots on his lungs are smaller but not gone yet...frown...so at least another month of voriconazole.  darn.  He also got vincristine today, which technically you aren't supposed to give when you are on voriconazole...but when you have cancer you don't follow normal rules.  You do what gives them the best chance to stay alive despite the possible side effects.  So the doc just said to watch for drop foot and pain in the hands and feet and stuff, she said the voriconazole might enhance the effects of the vincristine.  The good thing about that is that he doesn't have to do steroids again...cause fungus likes steroids and we don't want to encourage the fungus...it is hard enough to get rid of without encouraging it.  Yay for no steroids!! 

 Ty got a PCMC shirt when we went to the telethon, he wanted to wear it to his next horsey doctor appointment. 

 He did really good with his IV, he sat on my lap, and then held the helper's arm and laid his head on her arm while they poked it in.  It sort of melted her heart.  The IV guy had a shirt on that said "IV ninjas" Ty liked that cause he likes to 'slice' people on a regular basis.  His labs are pretty good. ANC is 800, low but not in the high risk zone yet which means he gets to go to Camp Hobe next week!  Yay!  Emily and Ty get to do the day camp Monday and Tues and Brenna will do teen week next week.  So fun!  The kids talk about Camp Hobe all year...it saved our summer last year, and is saving it this year again.  Real camping is out for us again this year so we are super thankful for Camp Hobe.  His other counts are in the normal range except white...WBC 3, RBC 4.45, HCT 38, PLTS 272. 

 Throwing coins in the ponds.  Ty is feeling good, he played with cousins a little more before we drove home, fell asleep on the way home and slept until about 8:00 tonight.  Now (10:00) he and Merin are running around the house giggling at each other.  Dinner was waiting for us when we got home...thank you!  We are spoiled!

We are still praying for Mike (scroll down to older posts for more details) or CLICK HERE

and if you want to know what it sounds like when Merin and Ty giggle scroll down to the dressing change video. : )  Time to get them to bed!!

CBC

I got a text this morning at 7am (yep I was still in bed) that said Mike had already run 10 miles of his daily 50.  I can't even wrap my brain around how much he will be running in the next few days.  It is amazing!  Sending our love to Mike this morning.
We got the results back from Ty's CBC and everything looks great so we are continuing the chemo regimen he is on and we go to his appointment on Tuesday.  He gets a CT to see how the spots on his lungs are doing (praying for completly clear so he can be off the voriconazole antifungal for good).  He'll get vincristine and maybe start the steroids.  He didn't have them last month because fungus likes steroids which was nice, they make him feel like crap.  And we will see what his counts are and the doc will adjust his chemo pill dosage accordingly. 
If you are just tuning in and don't know who Mike is, check out my older post...
Thank you Thank you for all the love, support, and concern you show for Ty and for our family.  We are so blessed and doing great!  It's fun to finally feel like we are in maintenance!  We hope it stays that way for a while. : )
For my records... ANC 1100, WBC 4.0, HCT 35.8, PLTS 304

Our New Hero Mike

Last night we got together with some other cancer buddies and friends to make posters for our new hero Mike.  He starts his run across Idaho TOMORROW!!  I am in complete awe of what he is doing to help our local cancer kiddos through the Tenley Foundation. Meet Tenley and Mike:

Yes, you heard me right, Mike is running ACROSS the STATE of Idaho in 9 days.  That's about 50 miles a day for 9 days straight.  Tenley is our friend who has a brain tumor, there is foundation set up in her name to help local kids battling cancer. 
You can see more about Mike and follow him while he runs on facebook under 'Mike's Extra Mile' and at www.mikesextramile.blogspot.com.  We would love it if you can spread the word about what this amazing guy is doing for us. 

 Funny faces! 

 Ty is feeling great! He is on such a low dose of chemo that we haven't really noticed any side effects right now.  He hates the fact that he can't eat 1 hour before and 1 hour after he has taken his antifungals and chemo.  He has a giant stash of fruit snacks under his pillow on his bed...we might be creating a food hoarder ha! 

But really other than being careful about sun exposure because of the voriconazole he is a normal kid right now.  I don't know what his blood counts are, he will get a CBC tonight.

 Tenley and her friend, Tyson, and Cooper...Cooper doesn't like posing for pictures which is why he wasn't in the ones we took with Mike.  Ty had so much fun at Cooper's house that he asked if he could go to Cooper's first thing this morning. : )  We all had fun!  It is great to get together with people who understand on a personal level what it is like to deal with cancer. 

Mike is a cancer survivor too!

 We are selling Mike's Extra Mile T-shirts for $15.00 a piece.  If you would like one let me know!!

Thank you in advance for spreading the word about Mike!  Feel free to share the link to his blog on facebook and tell your family and friends!  Thank You Thank You Thank You!!
AND THANK YOU MIKE!!

Back on Chemo

 Pokie prize!!  Ty got a couple sets of goo goo eyes for his pokie prize.  He got a CBC last night.  His home health nurse came and pulled the blood from his arm and it worked great, he flinched a little but that was it. (CBC counts the different types of cells in your blood and tells us all kinds of things, like whether or not he can go back on his chemo pills).  Good news is his ANC (absolute neutrophil count) is high enough to go back on chemo.  His oncologist is being super conservative.  He will be on 1/2 6mp (mercaptopurine) pill every other night and 1 mtx (methotrexate) every Thursday.  To put that into perspective, a normal protocol for him would be 1 6mp daily and 5 mtx pills every Thursday.  They keep cutting it and cutting it, hoping they can keep his ANC around a steady 1000 but so far each time he is on his chemo pills his ANC hits zero in about 3 weeks. In the mean time, he's had fun being off of his chemo.

He got a new port from some friends.  It is a super cool port that sticks to his shirt and makes ironman-esq sounds, but we think it is pretty sweet...much less painful to attach than a real one. 

 Ty can't have cookie dough cause when you are neutropenic you shouldn't have raw eggs.  He was helping me make cookies and trying to sneak tastes of the dough so I made him an egg free batch.  Let's just say it didn't last long.

 Ty got 4 new cousins this year and he LOVES holding babies.  With some cousins in town today he spent most of the day holding and playing with the babies.  He even made his baby girl cousin laugh.

 Baby girl cousin

 Nother baby boy cousin.

He loves helping out and doing 'normal' things. (Well, ok, he loves helping out when it's his idea and it sounds like fun...that's 'normal' right?).  Fertilizing the plants (and Ryan's socks) in the garden.

For my records: ANC 900, WBC 3.1, HCT 39.9, HGB 12.3, PLTS 346. 

Thanks for the prayers, love, and concern. We have so much to be thankful for! Life is good!