Spring Break, Beehive Bears Carving, One more down!!!

A little spring break fun..flying kites 

 Ty using his favorite mode of transportation up to clinic...no not the elevator...dad's shoulders

 Craft time!  Making a fierce one eyed monster...the bandaids are holding the numbing cream on...sort of, it was leaking out the edges all over the place so we took off his shirt

 Still growing!  107.5cm and 20.4 kg (almost 45lbs)

 His onc mentioned to Tyson today that he didn't always love coming there...he doesn't believe her, to him cancer means eating otter pops, playing video games, and getting pokie prizes.  Not to mention Camp Hobe and Make-A-Wish.  Thank goodness he doesn't remember much about those first few days!!  So thankful he is doing so well...that little fear creeps up once in a while of him relapsing at some point but he has a good chance of that not happening so we try not to be scared and just be thankful.  We are heartbroken for another cancer friend Taleah who just relapsed after being off treatment for 3 months.  Same kind of cancer Tyson has. She is in for a very tough fight and her family needs lots of prayers.

 Still doing awesome!!  ANC 900, WBC 2.7, RBC 3.98, HGB 11.5, HCT 34.1, PLTS 245.  His little sis had fifths disease a couple of weeks ago.  We were a little worried that Ty was going to get it from her but it looks like he sailed through that one.  His onc suspects she actually may have gotten it from Ty because last month he wasn't feeling the greatest and his hemoglobin was low.  It can cause severe anemia in immune compromised kids but if Ty had it he escaped any problems from it thank goodness.  Little sis's rash was pretty awesome though...

She didn't have any other noticeable symptoms, so no biggie, just a cool rash...and I guess once the rash shows up you aren't contagious anymore which seems backward...

A very cool guy showed up at our house the other day, a bear praying for Tyson!  Carved by our very talented friend at Beehive Bears Carving.  You should see some of his creations! 

Starting his monthly 5 day steroid pulse...bring it on!!  This morning (day after treatment) Ty mentioned that he hasn't even cried yet.  Interesting how much more he is aware of what steroids do to him than he was at first.  It is helpful now that he is older that he understands a little and we can talk about how steroids means you have to work extra hard at being nice, it's not an excuse to be mean.  He got up this morning and got 'dressed' in some soft superman jammies.  We spend a lot of time snuggling on the couch when he is on steroids.  That's okay, it's nice to slow down once in a while.  Thanks for checking in! 

 

St. Baldrick's and one more treatment down

Ty had his 2nd to last LP (back poke) this day.  Everything went great, we love his onc, love Primary Children's, and we are really looking forward to finishing treatment this summer!!!!!  Have we mentioned that yet?  Counts ANC 1300, WBC 3.2, RBC 3.35, HGB 9.4, PLTS 355

 

 We had so much fun at St. Baldricks!  So So happy that we live in such a great community.  They made over $50,000!!!  for kids with cancer.  Thank you so much!!!

 This is our next door neighbor Noah before and after pics.   Thank you Noah!

 We went to see Noah shave and while we were there found a few more friends...below is Ty's cousin's cousin.

 They had a gift bag for all of the honored cancer kids full of fun goodies for Tyson including a hat that Emily quickly took over.  She had a blast dancing with Kelley Martinez and playing hide and go seek with our cancer friend Tenley.

 Ty watching Noah shave

 We also saw our good friend who is the son of our most favoritest nurse in the whole wide world.

And another neighborhood friend! 

It was so inspiring and heartwarming to see so many people rallying together for kids with cancer!!!

It means so much to our family that people are paying attention and care. 

Thank You!!!!

One more down, 6 treatments to go!

 We are in the home stretch people!  Ty will have his last treatment in the middle of July, then I think he finishes out his chemo pills and then he will be done with treatment!  We will still be making trips to check blood and stuff for a long time after that, but as long as there is no sign of relapse he gets to be done done done with chemo this summer!  On the way down today there were lots of fields covered in white sparkly snow.  I pointed it out to Ty and he glanced up from his DS, looked back down and said, 'hm, I don't really like sparkly'.

 Today we had a few awesome games of UNO before he plugged himself into the xbox.

He finally gained a little weight, he is up to 19.8kg which is 43.5lbs and he is 106cm!  His ANC was super high which isn't really a good sign, they try to keep it low on purpose to keep the Leukemia from coming back but it could just be a sign that his body is trying to fight something off.  His oncologist upped his chemo a tiny bit from 4 half pills a week to 5 half pills a week for 6mp.  His methotrexate will stay the same at 1 pill a week.  WBC 9.6!, HGB 11.9, HCT 35.1, PLTS 281

He decided he wanted playdoh ice cream for his treat and luckily they have it at the cafeteria downstairs so he got a big cup of that and had it eaten in no time which surprised us, especially since he threw up right before we got to clinic.  So we are ending the day happy and thankful for another successful visit with no sign of relapse.  Ty said as we were driving away, 'I could do this day all over again'.  He loves his trips to horsey doctor.

Treatment

Ty's treatment was on the 27th, and now that everybody including me is over the stomach flu I have time to do a little post about it.  But first things first...Ty had a fantastic Christmas

He got some skylander jammies which he quickly changed into.  

 He did a back-hand-spring spotted by mommy for the talent show

 He got to be a shepherd

And at Kindergarten he made the cutest snowman ornament I've ever seen

Clinic was normal, we hooked him up to video games, they accessed his port, took blood for CBC, gave him his vincristine and we talked to the doc for a few minutes.  He wasn't feeling the greatest, told me he had a tummy ache when he got up that morning, and didn't eat much on the way or after.  That actually isn't that unusual so I didn't think much of it, he was still happy and playing and didn't seem ill.  He threw up on the way home... 

Yep, I took a picture of it, that's me driving, holding his bag of barf.  I did eventually dispose of it, but had to take a picture to show dad since he didn't get to come this time.  Really really thankful we had a barf bag with us.  Later that evening while we were at his Grandma's house playing with cousins he threw up again, after eating several gogurts and drinking lots of water.  That's when I wondered if he actually had something instead of just feeling nauseous from chemo.  At Grandma's house we cleaned it up with lots and lots of Lysol wipes...only to find out later that Norovirus, which is what we suspect he must have had, is immune to Lysol wipes.  Needless to say it spread to the cousins like wildfire, even cousins who were taking a plane ride home and though we will never know for sure where it came from, we are glad that we now know for the stomach flu you use bleach and Lysol brand III disinfectant spray cause Lysol wipes and Clorox wipes don't kill it.  It is crazy how it hit everybody differently, Ty didn't fever and didn't seem sick, some of his siblings and I did get a fever with it along with other unpleasant symptoms, and some people only got a bad stomach ache.  I know, I know, too much information.

Anyway he weighed 19.3 kg (42.5 lbs) and is 105.5 which I think is a little shorter than last time so not much progress in the growth or weight category.  ANC 1500, WBC 3.1, RBC 4.11, HCT 35.5, HGB 11.8, PLTS 222.  So the doc we talked to said he would like to see his ANC more like around 800 but he could see why Ty's normal onc is careful about raising his meds because of the invasive fungal infection he had several months ago.  He said it is super rare to have that kind of infection during maintenance.  I was surprised and thankful he read that far back into Tyson's chart before he came in to talk to us.  It is so nice when people take the time to be thorough and pay attention specifically to his needs.  We are so so thankful for the medical care he has received and so thankful for his oncologist.  I imagine it is not the easiest profession in the world for many different reasons which makes me even more thankful for the people who dedicate their lives to it. 
On a side note, I just finished reading "The Emperor of All Maladies" A Biography of Cancer by Siddhartha Mukherjee and it was a very informative, very good read and written in a way that 'normal' people can understand.  If you would like to know more about cancer in general I highly recommend this book instead of the bunk that is going around the internet.  If you see a "truth about cancer by Johns Hopkins" article be aware that is it not really from Johns Hopkins and that there is a lot more to cancer than positive thoughts and good nutrition.  I know lots of cancer mommies who are offended that people think good nutrition and positive thoughts would have prevented their child from getting cancer.  I just think people like to believe that stuff cause it makes them less fearful of the beast.

 

Chemo today

Ty had clinic today at PCMC, everything was routine, no surprises, just the way we like it. Talked to the doc and gave her a Christmas present (we gave her a white blood cell just like the one Ty got).  Got accessed and pulled blood for his CBC.  Played video games for a few minutes and got his Vincristine and then went to sedation.  Ty was so patient about not eating or drinking anything.

 Getting all hooked up for sedation.  We had one of our favorite nurses today which was fun. 

Ty taking off his stickers after waking up from his back pokie.  He was loving the goldfish today. 

Dad and Ty went down to the cafeteria to pick out some more food and Santa was there!    

He almost always falls asleep as soon as he gets in the car so he never eats much but that might be good since being sedated makes him a little nauseous.  Salt Lake was very snowy!!  19.4kg (42.7lbs)  105.9cm  WBC 2.7, HGB 11.7, RBC 4.08, PLTS 246, ANC 1100  so all pill dosage stays the same.  Steroid week.   Bring it on.

Chemo today

Ty had chemo today, it was short and sweet!  We went up to the local hospital, hooked him up to the game cube, took blood, got Vincristine, and done!  I don't know his ANC though because they didn't have that number yet when we left and didn't get a call from clinic on what his ANC was and if we need to stay on current dose of chemo or what.  *Sigh*  I guess the distance care coordinator got a job at a different hospital and they are in the transition phase of getting someone else to handle getting orders sent out and stuff.  After several phone calls to clinic yesterday I guess they finally got the orders in to our local doc so Ty could get his vincristine today.  I'll probably have to make a few more calls on Monday to find out his ANC and chemo dosage.  I can't complain, cause he is doing so so well but it does sort of make you feel like you are falling through the cracks.  We are thinking from now on we will just go back to doing all of his appointments down at PCMC, that way at least we know in advance what time his appointment is and what his counts and chemo dosages are before we leave the hospital.  Waiting for a call from clinic that never comes is getting old.  Oh! crap, I just noticed I missed a call from Ty's local doc at like 6:30...stink!!!  We really really like his local doc.  I could probably just guess what his dosage would be if only I knew his ANC.
Okay! Done complaining now! Other counts: WBC 2.5, RBC 3.74, HGB 10.7, HCT 33, PLTS 211. Height 105cm and weight 42.6 lbs.
I am still super duper annoyed that PMC won't let me have a copy of his counts anymore.  If anybody knows the person who wrote that rule have them give me a call cause I want an explanation!
ummm now I'm really done complaining
Ty also had a routine eye doctor appointment today, he did awesome!  Not only could he identify the letters, he could even see the teeny tiny ones.  So so thankful that there are no signs of cognitive delay from his treatment so far, no sign of drop foot, no sign of neuropathy, just have so much to be thankful for!!  Sometimes I wonder if having him in a tumbling class is helping him avoid drop foot, anybody know?  None of those things seem connected, but they all are pretty common side effects of the types of chemo he takes.  And we have a great eye doctor!

He has a pretty good cold right now, coughing up a storm and his temperature keeps threatening to go up and his little sis has had a temp of 103 on and off all week!  Ty's temp only got into the 100's so we didn't have to take him in *yet*.  He actually likes going in so he was bummed that it never got high enough to go.

  And one last pic I took just for fun when he was doing his homework the other day, the little pictures he was drawing were so cute!  Thanks for checking in!  We are super thankful that we don't have anything else to report!!  Happily blogging about boring stuff!! 

*Update* I just listened to the message from his local doc...ANC is 700 so I'm going to just continue his dosage unless I hear otherwise. 

Thankful that his local doc called!

CBC, Giant Microbes White Blood Cell, back on chemo

 Ty received an extra special present from his Aunt Erin tonight, a stuffed white blood cell!  Ah the irony!  This little guy should be wearing a crown because he rules Ty's life!  He's a cute little white blood cell though, isn't he?

ANC stands for Absolute Neutrophil Count...see if you can find that word in this awesome explanation of white blood cells... 

So today Ty went in for a CBC at the Pocatello Children's Clinic.  He was so excited because that means a finger poke which means he gets to pick out a pokie prize!  Yay! 

Unfortunately, even though we were there at 10:00am we never heard back from the PCMC clinic so we don't know if he is supposed to be back on chemo tonight or not.  He's been off his oral chemo pills for two weeks now because his ANC was getting too low.  Today he was supposed to go back on them if his ANC was back up. Sigh.  I guess we wait now until Monday or Tuesday, whenever they decide to call us.  I wish I would have remembered to call and badger them a little this afternoon.  I'll just update this page when I hear from them.  Here's to hoping he gets to go back on soon!...
Update: Back on chemo but back to his old dose of 1/2 6mp 4 times a week and 1 MTX.  Counts: WBC 2.9, HCT 38, Platelets 300-something, can't remember exactly, ANC 1000.  We were surprised that was only 1000 after being off for two weeks, I guess it took him a while to recover.  He had a blast on Halloween, dressed up as the blue power ranger, had a costume parade and party at school, went trunk or treating at the park, visited some cousins, trick or treating in his Grandma's neighborhood, had yummy soup at Grandma's, and trick or treated at his other Grandma's.

Off Chemo, CureSearch Walk, Joy Jar!

 Clinic today, except not clinic because we decided to try doing his appointment in town instead of traveling to Primary Children's.  All he needed today was Vincristine and a CBC which they can do here.  We have always been worried about what insurance would do about that since everything was already approved for PCMC and also we have always enjoyed the trip down.  (With only one kid in the car it's kind of like a date!) Aaaand being at PCMC makes you feel better, like you are for sure keeping the Leukemia away.  We love his local doctor too though, so we decided to try out a local treatment.  It only took a couple of hours instead of all day which was fun!

Merin was also happy that his appointment was here.  So if all works out with insurance we will probably keep doing them here which means a trip to PCMC every 3 months instead of every month.  Tyson was thrilled of course, he doesn't care where we go as long as there are video games involved. (At home we only play video games on Saturday)

 One of his favorite activities (we're pretty sure it is not an approved activity so don't tell on us shhhhh) is playing with the bed controls.  Those beds go way way up!

 He also brought along his Joy Jar that he received in the mail this week!  It is a jar full of fun things that people fill and send to kids with cancer through the Jessie Rees Foundation...NEGU  Tyson says Thank you! to the very kind, thoughtful, awesome people who sent this to him!

Ty calls this hospital the helicopter doctor, the helicopter pad is right outside the peds floor windows.
At his last appointment his ANC was higher than they want it. (ANC is an indicator of his immune system's ability to fight infection)  They like to keep his immune system suppressed but not so much that he is in the danger zone for getting infections that his body can't fight off.  They upped his dose of oral 6mp a little bit, from 4 half pills a week to 5 half pills a week.  I was really curious to see what his ANC would be at this appointment and sure enough it is 500.  Right at the cutoff point of being in the danger zone.  They took him off of his oral chemo (6mp and MTX) for 2 weeks and then we will get a CBC to see if his counts are high enough to start back up again.  They didn't weigh him or check his height, so I guess we will find that stuff out in Dec at his PCMC appointment.  WBC 1.6, RBC 3.3, HGB 9.6, HCT 30.5, PLTS 182.  They wouldn't let me have a copy of his lab report this time which I thought was really weird...As the parent of the child being treated shouldn't I have access to all of what is going on with him?  It would be nice to have a chit-chat with the people who make hospital rules and pick their brain one of these days.

Last Saturday we traveled down to SLC for the CureSearch walk.  Thank you SO MUCH everybody who donated to the walk this year!  We had a smaller team at the walk, which was understandable since it was General Conference weekend, but our team made more money for CureSearch than last year!  So THANK YOU THANK YOU!!!!  I posted a whole bunch of pics on facebook from the walk so I'll just share a couple here.

 The cancer kids starting the walk.  There were lots of furry friends, characters, and mascots there, the kids had fun dancing and playing with them.

Our awesome team Tyson's Brave Battalion!!  Thank you SO MUCH for coming!  I hope it was a memorable meaningful event for you!  It certainly was for me. Thanks for checking in!  I'll update in two weeks after his CBC.

Clinic Today, CureSearch Video

Clinic today at horsey hospital...minus the horsey because of the construction. Ty asked today if the horsey will come back after the construction is done...

Playing X-box with his buddy.

 He stayed up late last night so he was tired today!  We let him stay up since we knew he would be getting sleepy medicine, he seems to have a better day if he sleeps on the way home.

 He was happy to see Elliot the Therapy Dog for a few minutes.  Elliot is the one who will put his paws on the bed and pray for you.  Ty is doing much better at interacting with people at medical places, he used to ignore everybody and everything as a coping mechanism.  Today with a little nudging he responded to a couple of the nurses, his doctor, and he even gave one nurse the kiss she's been begging for.  Granted it was an air kiss and he was still pretty sedated when he did it, but she's counting it.

He was hungry on the way (on back poke days he's not allowed to eat or drink before the sedation) so he ordered costa vida right after.  Unfortunately he fell asleep as soon as we left and slept all the way home so we got his costa vida as soon as we drove into town...as soon as he opened it he felt like he was going to throw up so it is waiting in the fridge for his Zofran to kick in.

 He just asked me why he has a bandaid on his shoulder (they gave him his flu shot while he was sedated...a little perk to being sedated a lot, we can sneak an extra pokie in here and there)  He is doing great!  He grew to 105cm and weighs 19.3 which is about 42.5 lbs.  His ANC is 3000 so they are upping his dose just a smidgen from 4 halfpills a week to 5 halfpills a week of 6mp and his methotrexate stays the same at one pill per week.  Hopefully that will keep his ANC where it is supposed to be (a little below normal at around 1000) without going too low (when it's low he has a much higher risk for life-threatening infections) Other counts: WBC 4.4 (low, but normal for him), HCT 34.5, RBC 4.13, PLTS 243, HGB 11.8. 
I made a video of Ty's journey so far... hopefully it explains better than I can why we support CureSearch and other Childhood Cancer charities.  Watch it, share it, and become a fighter with Tyson!  We'd love to have you on our team!!!  To join the team click HERE click on "JOIN TEAM" and follow the instructions.  If you are a member of the team and you donate/raise $100 or more you get the official CureSearch T-Shirt.  If you cannot make it to the walk join as a virtual walker. THANKS!!!!