More Camp Hobe, tummy flu, mouth thingy

Ty and Merin had so much fun at Camp Hobe! 

 At the end of the day they sing campfire songs to us that they learned.  They are singing Bubblegum in this one.

Ty was on steroids but had a good time anyway.  He ate 14 chicken nuggets after I picked him up from day camp Monday, and then asked for more as soon as I picked him up the second day.  In the pic with him is Avery who was diagnosed the same day as Tyson with A.L.L. We met in the hospital that first week and have kept in touch ever since.  Girls have a shorter treatment than boys so she is almost done!  We are excited for her! 

 Friday we went back and picked up Brenna from Teen camp.  She had a blast of course!  Have I mentioned before that we love Camp Hobe?  We are so thankful for them!

We went to Kaysville for the 4th so Dad and Brooke could run in the 5k with her cousins.  They did a great job and the parade was so much fun!

 Ty's uncle fills the back of his truck with a swimming pool full of water for the parade and the waterfight afterward.  Everybody took turns dipping their feet in the pool to stay cool.

 And Ty had a blast taking out the guy on the tanker full of water that was spraying everybody! 
Ty threw up first thing Friday morning, and his sister threw up in the night that night.  We figured out later that they got a stomach bug from playing with cousins earlier in the week.  No fever though and we managed to keep him hydrated so we didn't have to take him in.  He threw up the next morning as well and then this morning (Sunday) he woke up with a sore mouth.  Basically his whole mouth hurts and he can't eat much of anything.  He's been eating frozen V8 fusion slushies all day.  I am hoping someone has seen this before so they can tell me what it is and we won't have to go to the ER. 

 This is what it looked like this morning...the back/roof of his mouth had little cracks in it and looks angry in general. His taste buds are swollen.  his tongue isn't really that white, I think that is from the flash.  But his taste buds really are that red...

 A few hours later the cracks sort of grew bigger

 And bigger like the skin is sloughing off or something

And that's what it looks like now...like big chunks of skin are gone.  Soooo not sure what to do.  It doesn't really look like thrush but I guess it could be.  Doesn't thrush seem more spiderwebby and patchy usually?  If it is thrush and he happens to be neutropenic is there a chance that it could become systemic?  Cause he's been there done that and it is not fun.  So here lies my dilemma.  Wait till tomorrow and take him to the children's clinic or take him to the ER tonight.  He doesn't have a fever or anything, and other than not being able to eat feels fine.  I am wondering if it is just a continuation of the virus that caused  his stomach flu.  Also wondering why this kind of thing always happens on the weekend making the ER our only option.  His ANC was 800 at his appt 3 weeks ago...so not incredibly low but he has been known to have a sporadic ANC.  Bleh.  If it was any of my other kids I wouldn't even take them to the doc.  Has anybody seen this before?
UPDATE: Took him to his pediatrician today and he said for a normal kid he would just say its a virus and will go away, but with Tyson whenever you see mouth sores like that you want to make sure he's not neutropenic so he did a CBC and his counts are good, everything including his ANC is in the normal range so no worries for now.  Thanks so much for all of your suggestions and concern, I was glad we didn't have to go to the ER.  His CBC for my records: WBC 4.2 (normal), RBC 4.48 (normal), HGB 12.8 (normal), HCT 40.8 (normal), PLTS 305 (normal), They weren't done with the ANC when I left but said it was at least 1600 so no worries.

Clinic and Camp Hobe

Ty graduated from preschool!  They did the cutest program with lots of songs and Dr. Seuss decorations.  He loves his teacher Miss Shelley.

Ty is having a great summer! It seems like no matter how much sun screen I use he gets a little tanner each day.

 We had a yard sale to raise money for our CureSearch walks in August and October.  The kids took turns selling donuts.  Thank you Thank you to everybody who donated items to our yard sale at the last minute, and thank you to our great neighbors who advertised for us.  It was a great success!  We will probably do one more before our walks.

 Clinic today at horsey doctor (PCMC) except they are doing construction right now so the horsey is nowhere to be found...we wonder if the horsey will come back.

 Ty found a spider craft to do in the waiting room

 And we followed standard procedures of getting him in the zone while they accessed his port. 

 He even got to play for a few minutes in the sedation suite while they got him all hooked up

 Getting his 'back poke'.  That's his fantastic doctor in the background.  His eyes are open but he's sedated enough to hold really still and not remember the procedure.

 He wanted lots of hand cuddles while he woke up.

Back to infusion waiting for his vincristine

 We got to see our favorite therapy dog Elliot. 

 Getting his vincristine, they push a little in then pull back out until they see a little blood, then push a little bit more in.  They always make sure it is going into the bloodstream and not into tissue where it can cause a lot of damage.

 Merin and Brenna came with us today so they got to play in the new Forever Young Zone playroom.  Isn't that the cutest little hospital bed/doctor chair/IV pole you have ever seen?

When we went to pick them up Ty had to check everything out before we could leave.  They did a great job remodeling it, lots of fun! 
Ty was not feeling so great afterward, and fell asleep as soon as we were in the car.  He hadn't had anything to eat or drink yet (they can't eat before being sedated) so we were wondering if he was just feeling nauseous cause he didn't have any food in him.  When he woke up we convinced him to drink some sprite and a little bit of a shake and tried to get him to eat a hamburger.  He couldn't get himself to eat the burger and threw up pretty quick after that so I guess his treatment got to him a little bit this time.
We took Brenna to Moochies for lunch and we had a little bit of time for shopping before we headed to Tooele to pick up Brooke Ryan and Emily from Camp Hobe.

 This is Brooke's 3rd year and Ryan's 2nd year at Camp Hobe kids week.

 One of our favorite camp counselors Share-bear!

Emily got to stay the whole week this year for the first time.

They had SO MUCH FUN!!  We are so so thankful for all of the Camp Hobe donors, volunteers and staff.  They saved our sanity that first year right after Ty was diagnosed with Brady gone and Ty in and out of the hospital and not able to go anywhere the other kids were looking at a pretty lame summer.  Camp Hobe has a way of turning something that can be so stressful and hard for these cancer kids and their siblings into something exciting and fun.  They talk about and look forward to Camp Hobe all year long!  Brenna is looking forward to teen week next week, and Tyson and Merin are both so excited to go to the 2-day day camp next week as well.  That makes for a lot of trips to Tooele in 2 weeks, but it's worth it!!

Ty was still feeling a bit iffy when we left Camp Hobe so he got his barf bag positioned just right before he fell asleep.  He woke up from that nap famished and was finally able to eat and drink and feel better.

He weighs the same as last month pretty much, a tiny bit less actually but not much of a difference.  18.7kg I was a little surprised cause he ate a lot of peanut butter sandwiches toward the beginning of the month.  It is fun to see him get a little bit taller each month.  102.5cm.  His ANC is 800 so his chemo pill doses stay the same. WBC 2.1, HGB 12.1, RBC 4.12, HCT 36.1 and PLTS 215

Bring on steroid week!  Here's to hoping that he can still have a good time at day camp even though he is on steroids.  Thanks for checking in with us!  We are so thankful he is doing great and always praying for our cancer fighting buddies and the heartbroken families of angels.

Clinic Day

All clean and ready for clinic!

 As usual...Ty didn't even flinch when they accessed his port....he was in the zone.

 Ty got a present from Legos for Leukemia at clinic today!  What a great surprise!  Those legos were collected and donated by a kid who survived cancer and wants to give back. 

 He actually stopped his xbox game to play with the legos for a few minutes.  He got to play longer than normal today because Ty's normal doc wasn't in so it took a while for someone else to see us.  Usually Ty doesn't feel like he got enough game playing in cause his doc is so prompt so we aren't there for very long.  We sure love his doc!

Everything looked great!  His weight is up a little 18.8kg, (41lbs!), and he seems to be growing like a weed, 102.2cm.  His ANC jumped back up to 1200 which is close to where they want it so his meds stay the same.  Other counts: WBC 3.2, RBC 3.79, HGB 11.0, PLTS 267. As usual everything is a little lower than a normal kid would be except platelets but everything is where it is expected to be for him. 

 He decided that from now on every time we go to clinic he is going to pick a cookie out of the vending machine. 

I forgot to post in March that he taught himself to ride his bike with no training wheels.  He zooms up and down the street now on a regular basis.  Thanks for checking in! There is always that little feeling of nervousness going to clinic hoping all of the news there will be good news and then we drive home feeling relieved that everything is fine and he gets to keep being 'normal'.  Here comes steroid week....yeeeehaaaaaa!

Happy Cancerversary!

Wow!  I am happy to say I went the entire day without even thinking about or remembering that two years ago today Ty was diagnosed!  I was noticing how pale and sickly looking he was at church this morning but that is to be expected cause he almost always looks like that on steroid week so even that didn't remind me that it was his cancerversary.
 I should look back at the two years and do a post about it but I don't even want to go there.  We have gone so long now without any complications that we are thinking and worrying less and less about possible complications and relapse.  Of course we do still think about things like that, and I am always ready for a possible stay at the hospital.  It is such a relief though that I don't want to bring up all of those old emotions by looking back at what he's been through.  Maybe I'll do a post about that soon.
We have also been through so much good, so many blessings, and had so much love and service from all of you that we don't want to focus too much on the bad.  We are so thankful that Ty's treatment has had good results so far and that his treatment has been tolerable and lets him still be a kid most of the time learning and playing and growing up.  We are hoping that we can help the kids with the other kinds of cancers get the research they need so that their treatments can be less tortuous and painful and miserable.  That's why we get involved in awesome organizations like the Tenley Foundation and CureSearch.  We hope to do our teeny tiny part ... we know Ty has such a great treatment plan because of a whole bunch of people from the past who did their teeny tiny part.  We are really really super duper endlessly indebtedly thankful for all of those people!

Clinic Day and stuff

 Clinic day has become so routine that we have to add some other fun stuff...like Ty's favorite book right now.  It's No David!  He has it memorized and thinks he is super hilarious when he replaces 'David' with doodyhead.

 His sloppy joe sandwich mostly fell out on his plate...but he was actually eating it so I had to take a picture.  He doesn't like meat very often, especially spicy meat.  He weighed 18.0kg Friday (39.6lbs) at his appointment, which is down a hair.  I kind of expected that cause he didn't eat like crazy on his steroid pulse like he normally does.  Hopefully we can get lots of food down him on the steroid pulse that he started this Friday.  He always takes steroids for five days starting the day he gets vincristine.  They work together. They said he was 101.8 cm tall but I'm not convinced that's completely accurate so we'll see what it is next time and compare...I think it was 101 even last time.

 He has a cold and Thursday was threatening a fever.  He would hit 100's but then go back down.  The rule is if it stays in the 100's for more than an hour we have to call.  He was happy to see 100's because he likes going to the hospital.  Kudos to Portneuf Medical Center and Primary Children's!  I'm not sure if there are very many 5 year olds who like to go to the hospital.  We ended up not having to go.

 He also discovered Thursday that we have 2 of those thermometers and had a lot of fun measuring both ears at once. 

 Spitting in our sample cups for a study we are participating in.  They want our DNA so they can try to discover factors that indicate why people get cancer.  Maybe they will clone us too.

On our way to clinic.  Ty still holds my hair for comfort...something he picked up when he was a tiny baby.  I'm sure he would have grown out of that by now but since he still feels like junk frequently he still needs it.  I'm not in any hurry to make him grow out of it either.  I mentioned to a new mom once about a year ago that my four year old still holds my hair like a security blanket and she retorted, 'I hope my baby isn't still holding my hair when he's 4!'  We are always in such a hurry to make our babies grow up!  Ty has had to grow up too fast in a lot of ways so I have no problem with letting him be little in this little way.

 Probably one of the 'gifts' of cancer has been helping us see what matters most over and over again.  We don't sweat a lot of little things that used to seem important.

 Ty always likes shoulder rides at the hospital

 Getting his port site cleaned and ready for the 'magic sticker'

And taking a minute to play with the foot pedal sink before we left.  Our visit was quick, they took blood for a CBC and he got his vincristine and we talked to the doc for a few minutes.  His ANC shocked us a little bit, it is only 600. That's right on the border of neutropenic so we need to be a little careful about germs and stuff, we have kind of gotten out of the habit of being ultra careful now that he has done so well for so long....hence the cold I guess! They are keeping him on the same meds for now.  Hopefully that will be back up to around 1000 next month.  He's already on such low doses of his oral chemo I can't imagine them getting much lower.  The rest of his counts: WBC 2.0, RBC 3.87,  HGB 11.4, HCT 33.9, PLTS 189.  Everything is a little bit low except platelets, but not low enough to need transfusions or anything. 

Normal CBC ranges for him would be WBC 5.5-15.5, RBC 3.90-5.30, HCT 34-40, PLTS 150-400, ANC 1500-8500

Thanks for checking in!

Mike and Penny Wars

Last night we got to see Mike! Remember Mike's Extra Mile? Last June Mike (a cancer survivor) ran across the state of Idaho (435 miles) in 10 days for the Tenley Foundation for our kids who fight cancer! The Idaho PTA asked him to be the speaker at their state PTA convention last night. That is the first time I heard the story of his run from his perspective.

He did such a good job, he had us in tears one minute and laughing the next. I wish now that I had recorded it. Every morning when he was running I would get out of bed knowing that Mike was already up running and I would wonder how in the world anybody could run 50 miles and get up the next day and run 50 more over and over again. He talked about how on one of the days he was so exhausted that he kept falling asleep while he was running...that that was the day that he had to dig deeper than any other time in his life and thinking about our little cancer fighters is what kept him going.  

 My friend Holly who's son fought cancer ran with him one of the days expecting to make it about 25 miles and she ended up running the whole 50 miles that day!  That was the day he was near Idaho Falls so we got to see them.  Mike choked up a few times while he spoke, one of them was talking about the kids running with him.  We loved being there for a few minutes, it was unforgettable.

Tenley, Ty, and Mike

The Idaho PTA also gave the Tenley Foundation a big check from the penny wars they held in local schools. When they had Tenley say a few words she simply said, "I couldn't be happier!" Channel 8 did a little story about her and Mike:
http://www.localnews8.com/news/Inspirational-Pocatello-girl-battling-cancer/-/308662/19736296/-/1atf2w/-/index.html

Tyson is doing great!!  We registered him for kindergarten and got our forms to exempt him from immunizations.  (He can't have them until he is off treatment because of his low immune system).  His last steroid pulse was kind of weird cause he didn't really have any steroidish cravings so hopefully he is still gaining a little bit of weight.  His food preferences are so bizarre, sometimes all he will eat is fruit and then on other days he tastes something and has to spit it out in the garbage.  He gagged on his biscuits and gravy this morning even though he loves them most of the time so he basically gets to eat what he wants when he wants.  Ice cream in the middle of the day? no problem!CHIPS right? (cancer has its privileges)  His next treatment is Friday so my next post will probably be that day.  We are so thankful that we don't have much to post about anymore!  Especially when all the news we have is good news! 

Thank you Mike!  

Thank you Idaho PTA and MaryKae Ryner for arranging Penny Wars! 

Thank you for checking on Ty!  

Another Clinic Day...Another Month Down

 Clinic today!  We always have to have a race, I go up the stairs and they go up the elevator... somehow they always win

He found an awesome superhero coloring page in the waiting room  

Good news!  He finally made it to 40lbs!!  Weight 18.2kg, Height 101cm 

Our favorite therapy dog came to visit and Ty got to feed him a snack.  We love Elliot and we admire his owner who is very dedicated to helping these kids.  Today was back poke day where they take a little spinal fluid out and put a little chemo in.  That is to make sure he doesn't relapse in his central nervous system which can be a problem with A.L.L.  He fought the sedation today and never really went to sleep.  His onc said he might be outgrowing his dose... he's had the same dose of Ketamine and Versed since he was diagnosed.  They will probably up it a little next time.  He did great though.  I was a little worried cause we let them take a little extra spinal fluid for a study on kids with Traumatic brain injuries.  They needed spinal fluid from kids who haven't had one so they can compare it to the spinal fluid from kids who have so they can study markers in the fluid that might indicate why/how some kids recover and some kids don't.  It increased the risk a little for headaches but he didn't get them so whew.  We are happy to be involved with research any time we can.  Tyson is alive in part because lots and lots of kids and parents were willing to allow research.  

Ahhhh and he finally gets his hangabur topping.  He only likes the top of the hamburger, and it has to be from Arctic Circle...all the other delicious stuff in that box just sat there while he napped the rest of the trip home.

Counts for my records: ANC 1000 (perfect! that is suppressed just enough which means all of his oral chemo doses stay the same) WBC 3.1, RBC 4.04, HGB 11.9, HCT 35.8, PLTS 257

For curiosity sake I'll post the normal ranges:  ANC 1500-8500 , WBC 5.5-15.5, RBC 3.9-5.3, HGB 11.5-13.5, HCT 34-40, PLTS 150-400

It was a good day! Thank you for dinner!! 

We are so sad for a cancer friend who has already fought cancer twice and just found out she has it again.  That seems to happen so much!  It really makes us reflect on life and what is most meaningful and important.

We are also praying for one of Ty's favorite nurses at Primary Children's who was just diagnosed with breast cancer.  The cancer mommas are teaming up to do a fundraiser for her and we hope it is on a day that we can go down for it. Maybe we will even see some of our Utah friends and relatives there!  That will be fun. We are really hoping she can beat it without a lot of complications...we couldn't imagine clinic without her!

Thanks for checking in! Ty is doing so well, his side effects are relatively mild and he is a normal 5 year old for the most part.  I banned video games for the month of March so he has been outside playing with neighbor friends, riding his bike, and totally wearing himself out!  He is still loving preschool and tumbling and we will register him for kindergarten soon!  Life is good!