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!!!!

Little Fever Party

So around 8:00 tonight Ty gave me a hug and he felt hot so I took his temp...101.4.  Bleh.  I was just about to head out the door because Brooke and Emily had appointments at the church.  I knew that wouldn't last long so I told Ty to get dressed (he likes to hang out in undies only at home) so I could take him to the hospital when I got back.  You would think by his reaction that I told him we were going to Disneyland.  He started jumping around and dancing and singing about helicopter doctor which is what he nicknamed our local hospital because right outside the windows on the peds floor is the helicopter pad.  It has been a loooong time since we've had to do the fever run.  I ended up sending him up with dad because I didn't have Merin in bed yet and she fell in the firepit when we were camping last week and burned her hands.  Needless to say her hands are still trying to heal and hurting a bit so I knew I needed to stay here with her. 
Dad took him to the Children's Clinic and they did a CBC there and his ANC is 1600 'Whew'  and now they are up at the hospital so they can get some blood cultures going and give him some Rocephin through his port 'Whew' again!  Rocephin shots hurt like the dickens so it is always good when they will do it through his line instead.  Good ANC means he doesn't have to stay there so after they are done with cultures and stuff they should be home.  He is in hog heaven right now playing the game cube and getting his rocephin IV.  Brady says Ty is forcing himself to stay awake so he can keep playing.  (The hospital is the only place we let him play endless video games...hence the jumping, dancing and singing when he found out he had a fever.)
I guess since I'm not there to take pictures I'll have to share a few camping ones. 

 

 Fishin with Grandpa

 Favorite part of camping...roasting marshmallows

 Watching the moose

 Old Faithful

 Old Faithful Inn where Ty's great grandpa was born

 Found a slug on the hike

He starts Kindergarten on Tuesday!!!

HopeKids walk, Clinic Etc

 We had so much fun at the HopeKids Wasatch Adventure in Kaysville!  We are hoping we can make it a tradition even though it is so far from home.  Dad and the kids were able to go the year before last but Ty and I were stuck in the hospital with a fever so we were excited that we could make it this year.  Wondering what HopeKids is?  Click HERE for more info

 Ty's fantastic Oncologist Dr. Wright was even there as a volunteer...of course Tyson was suddenly very interested in the color of the grass when we saw her...he still has a hard time talking to medical people..and all other adults for that matter.  Sometimes the nurses can get him to conjure up a smile but that's usually the best they get out of him. 

 After the walk we went to an extended family reunion and we were able to meet our fantastic cousin Elise.  She has been one of Tyson's biggest supporters through his journey and is always sending us notes of encouragement and love.  True to form Ty didn't have much to say but he had so much fun swimming and playing I even got him to smile for a picture.

 Holding really still for his blood pressure check.  We had clinic today and good news!  He gained a pound and a centimeter!  He is now 104cm and 42lbs!! 

 The nurses were so fast getting his chemo he didn't even get a chance to do much game playing...

So we stayed a few extra minutes after we were all done.  His Aunt Erin got to come see what clinic is like.  She has been staying at the UofU hospital next door with Tyson's Grandma who recently had a brain anyeurism burst and is recovering in the critical care unit there.  We are saying lots of prayers for Grandma, she is in for a very long intense recovery and we miss our spunky fun crazy Grandma Kitty-Kat!  Erin stayed with Ty for a few minutes while we visited a couple of the cancer kids in the ICS there and I visited Grandma at the U.

For my records, Tyson's ANC was a whopping 1600!  They aren't changing his pill dosage right now either so I'm happy that he gets to start kindergarten with pretty good counts.  I am betting that when we go back in September if his ANC is still that high we will be upping his chemo pill dosage a little.  He is still on about 20% of the normal protocol so it would be nice if he could take a little more chemo without crashing his counts too much.  We worry sometimes that he isn't getting enough to keep the 'R' word away but as long as it is suppressing his bone marrow like it is supposed to I guess it must be working.  WBC 3.3 which is low but normal for him, HCT 33.4 a hair low but also normal for him, HGB 11.1, PLTS 277 normal, RBC 3.83 just a hair low.

Ty stayed awake the whole ride home this time and we went straight to his cousin's birthday party complete with super fun water slide. He was so glad we made it home in time to join the fun! 

Thanks for checking in!  We are so grateful Ty gets to be a kid and do fun things like everybody else and we are always praying for the cancer kids who aren't so lucky.  We just found out another A.L.L. cancer friend has relapsed and we are so sad that she has to start the fight all over again, relapsed ALL is much harder to fight successfully than the first time around and we hate that it happens so much!    We appreciate so much all of the support and love and prayers!  Thank You!!

Clinic, Crazy Fun July

 Super Ty!!  We have had a super busy July!

 (Ty with his favorite story...he has lots of stuffed animal friends on his bed...each one with its own unique story)  I haven't had a chance to update and I have to admit in my last update about the doctor appointment I didn't divulge all of the details about that appointment at the doctor's office to see what was going on with his mouth sores.  We didn't want to be overly dramatic or sound paranoid so we kept the part to ourselves that the lab technician found an abnormal white cell that neither she or the doctor could identify.  It had him concerned and he said if you weren't going to clinic on Friday I would probably send you down there earlier. 

 

 So needless to say I spent the week preparing to stay at Primary children's just in case that 'abnormal white cell' turned out to be something sinister...after all a Leukemia cell is called a blast and is just that, an abnormal immature white cell. 

 Of course part of that preparation was taking lots of pictures of his current cuteness so you get to see some of them...including my favorite...

Soooo to avoid keeping you in suspense any longer his oncologist was sure it was nothing and sure enough they found nothing abnormal in his CBC.  His pediatrician from home called me on my way home from Utah to get an update.  I appreciate his concern so much.  The only thing weird on his CBC was that the immature granulocytes were a tad high.  I wonder if that is what they saw in the original CBC and just didn't know what it was.  Who knows.

 Getting spoiled at clinic while he waits for his chemo.  Thanks to countless people and organizations, Tyson thinks having cancer is fun.  I'm glad that is what his memories will be of this whole thing.

Had to get his cookie while we waited for meds at the pharmacy.  His visit was normal and quick and everything looked good.  He grew a little taller but didn't gain weight...probably because of that little stomach flu he had so no worries.  He told me when we got in the car that he was going to stay awake the whole trip home this time...about 10 minutes later he was sound asleep.  for my records:  WBC 3.2 (low but normal for Ty), HGB 11.3 (just a hair low), HCT 34.1 (normal), RBC 3.95 (normal), PLTS 283 (normal), ANC 1200 (low but great for him so his at home chemo pill dosages stay the same) Immature Granulocytes 0.6 (high) 

 Monday after clinic we went to Lagoon through Make-A-Wish and Give Kids the World.  Have I ever mentioned that Ty LOVES roller coasters?  He was sad that he was too short to go on the really big ones but had so much fun anyway.  This pic is of the ride Bombora which is fun.

 Lagoon has so many rides!! and we were there on a Monday so it wasn't crowded, we had a great time!  Thank you Lagoon!!!

 In July we also played with lots of cousins...

 Went to Cherry Hill through Give Kids the World/Make a Wish also (Thank you Cherry Hill!!) ...

Had tank wars with fireworks...

Went swimming at Lava,

 Went camping...

Ziplining!!!  This is Ty and his daddy having so much fun!...

 Thanks Uncle Bud for the awesome closeup!...

Floating the river at Lava...

And we did another yard sale for our CureSearch walk in October. 

Thank you so much to the people who donated stuff!  We are so excited to help cancer kids of the future in our own teeny tiny way. 

Thanks for checking in with us!  We are so relieved and grateful that he is doing so well!!