Tyson's Brave Battalion

Tyson's Brave Battalion
Things don't go wrong and break your heart so you can become bitter and give up. They happen to break you down and build you up so you can be all that you were intended to be.” ~Samuel Johnson

Tuesday, October 30, 2012

Preschool & Clinic today...higher chemo dose

 First things first...it has been so long since I updated I just have to add that Ty is loving his tumbling class...
 The mini maze at Swore farms...it makes me remember what it was like this time last year...

October 2011, one year ago.  He was in the middle of his most
intense phase of chemo...what a difference! Oct 2012
   Ty got to wear his Halloween costume to preschool this morning!  He LOVES preschool!
 And we took him straight from preschool to his 2:30 clinic appt. at PCMC
 We always stop to throw coins in the fountains out front.  He was very quiet and nervous because this is his first port access on his new port.  It has been several months so he was worried about it.  He kept asking me if 'magic stickers' have pokies in them.  I told him they did but since we put cream on it doesn't hurt.  He was still really nervous.
 He didn't even flinch when she accessed his port.  It didn't hurt at all.  Yay!  His nurse is sooooo good at it, she just pops it right in so he never sees the needle.  And dad had him sufficiently distracted with video games.  Hopefully he won't be so nervous from now on.
 Getting his vincristine...he doesn't care as long as he can play...the visit was so short today that he had to stay a few minutes and play a little more playstation.
 And Batman had to go visit Spiderman of course...and Superman...
His counts shocked us today, they are so high that they doubled his dose of 6mp (the chemo pills he takes) to bring his counts back down to where they want them to be.  They want his ANC to be around 1000 and right now it is 4600!  ANC range for a normal person would be anywhere between 1500 and 8000.  They try to keep his suppressed a little to keep the Leukemia from relapsing.  He was at 25% of the normal dose which is 1/2 pill every other day.  Now he will be at 50% dose which is 1/2 pill every day which means EVERY night is a 6mp night.  He always asks if it is a 6mp night because he knows he can't eat 2 hours before or 1 hour after he takes it (I think that's how it goes) and he can't have ice cream, milk, or orange juice that night.  When we told him it is 6mp night every night now he just said 'okay'.  His maturity surprises me sometimes. 
His oncologist didn't raise his Thursday night pill.  We didn't talk to her after, but I'm guessing that is because just taking his one tiny pill of methotrexate (which is 10% of his original dose) is giving him a rash around his mouth and he even got a couple of small mouth sores from it a couple of weeks ago.  I'm glad they didn't raise that. Here is what his rash looks like:
It is worse on the weekend, Saturday and Sunday and then fades a little bit..but it seems to be a little worse the last couple of weeks.  It doesn't itch or bother him though.
 Hopefully the increase of 6mp will do the trick without crashing his counts.  He will have a CBC in a couple of weeks to make sure it isn't making his counts go too low. 
He also starts his 5 day stint of steroids today.  Boooo
Thank you for dinner!  I'm amazed that people are still bringing us dinner over a year and 1/2 into this!  We got home after dinnertime tonight so it was great that my kids got dinner and we didn't have to worry about it one bit!
He gained some weight!  17.6kg which is 38.7 lbs!  He really is eating pretty good, his favorites right now are german pancakes and PBJ sandwiches.  I'm sure his week of steroids had something to do with his weight gain too.  Counts for my records: WBC 6.7, RBC 3.89, HCT 34.4, PLTS 251, ANC 4.6

Thursday, October 4, 2012

Recovery from surgery, Steroids & Shirts

It's funny to say recovery from surgery!  It's like he didn't even have surgery.  His port insertion site doesn't hurt unless he bumps it and today he's doing flips on the tramp and out playing with friends.  I do already see the effects of the steroids however.   He hasn't had to take them since April because of his fungal infection (fungus like steroids).  Normally he should take them for five days every time he gets vincristine which is once a month.  The steroids and the vincristine work together to keep the Leukemia away.  When he takes them he gets extra hungry, easily agitated, and his eyes look sunken with dark circles around them.  Luckily all of that wears off fast cause he only has to take them for five days.  Normally, because of the chemo he takes at night, he isn't hungry in the morning, but with steroids in him he wants to eat as soon as he wakes up
 He even took this one with him when we took the girls to school.  Today he has had a bowl of lucky charms, some spaghetti, pudding, and 3 whole pb&j sandwiches.  He is still in a pretty good mood so far though...whew!
 Ty had to miss preschool Tuesday to go to PCMC so while he was gone his class made him a very cute get well poster!  He loves it!  Thank you so much Miss Shelley!
I have a few Idaho Fighers T-shirts left over from the CureSearch walk that has a pic of Ty and a few of the other Idaho cancer fighters on it.  If you want one let me know via email or text me jfamily8@juno.com  I'll give them on a first come first serve basis for $7.00 a piece.  Here are the sizes I have: 1 Men's xlg, 2 Men's xxlg, 3 Men's lg, 4 Men's sm, 2 Women's xlg, 2 Women's lg, 4 Women's med, 1 Women's sm, 2 Kids xsm, 1 kids sm, 1 kids med, 1 kids lg.
These are great cause they advertise the Tenley Foundation for us so if you want to help us advertise our awesome charity with a shirt let me know asap!!  I'm not ordering more shirts so act quick if you want one.  Thanks!!

Tuesday, October 2, 2012

Surgery, Chemo, and CureSearch Walk

Idaho Fighters Team!!!  I probably have a couple hundred pics from the CureSearch walk...this one is my favoritest.  It makes me cry.  Thank you so much for coming, I hope the walk was as meaningful for you as it was for me!  The next pic makes me cry too...
 Each family that was there who has lost a child to cancer let go of a white balloon
 Then each kid who is fighting or has fought cancer got to go on stage and get a medal...you can play where's Tydo if you want
 I'm not sure how he got lucky enough to hold the banner.  The sun was bright, he didn't look up very often.
Each walker got a bandana (well, until they ran out that is...sorry to my team members that didn't get one!)  The dark green ones signify people walking for a cancer fighter off treatment, the medium green ones like the one Ty has on his head signify walking for a cancer fighter on treatment, and the very light green ones are for people walking in memory of a cancer fighter they lost.
 Then after they got all got medals the cancer kids started the walk for us...see Ty peeking over the banner?
And a fellow A.L.L. fighter lifted him up for a picture, so sweet!
And there they go!  My short little buddy peeking over again.  The walk itself was about 2 miles around the park and since there were over 3000 people walking, it was quite a sight!
Not sure if you can even see us in this one...I think we are wayyyyy back behind those trees.
But here we are! Go Idaho Fighters!!!
 Each cancer fighter had a poster with pictures and their story
 There were so many people there it was very chaotic!
 But it was fun chaos!!
 Ty even had enough energy at the end to run up the hill a few times and roll down
The CureSearch walk was organized and put on by a group of volunteer Utah moms of cancer fighters.  I have met most of these ladies and they are awesome!!! 
We are so thankful we got to be a part of the walk!!
Last but not least...here are a couple of my cousins who shaved their heads last October in honor of Ty for St. Baldricks.  They are some of my heros!  To read that story click HERE.
I wonder if there is a limit to the number of things you can put in one post...so much has happened lately.  Today Ty got his new power port...
 Checking in bright and early at same-day-surgery at 8am...which means we were up at 4:30 to get here on time.  I drove since Brady got home from working in Boise at 2am.  Two hours of sleep might count as drowsy driving.
 97.9cm!!  I'm sure that wall thing isn't always totally accurate, but it looks like he is growing.  His weight was 16.8kg, which is just a tiny bit less than it was last month.
Then up to oncology clinic for his exam, blood draw, and vincristine... Pokie prize!!  He's been waiting and waiting to open these gel pens.
 And a little more gaming of course while we wait for blood count results and stuff.  His counts were great!!  His ANC was 1000 which means they don't raise the dosage of anything...yay!  WBC 2.8, RBC 4.13, HCT 36.9, PLTS 244
And now back down to surgery...we got a little creative while we waited...gel pens are much more fun way up high 
 Still waiting...catching bubbles...
 Still waiting...zooming the car behind the sink foot pedals
 Then the surgeon came in to explain the surgery and show where the new one would be.  The line on the right is the line where he will cut to insert the new port...the pink line on the left is his old port scar...and of course he had to add a nose and a smile.  He was wondering on the way out what the nurses were going to think about the extra lines he drew. : )
 Surgery took about an hour and went well.  His nose was super itchy as he woke up.  This was the first time Brady was there when we handed our little buddy over to the anesthesiologist and said bye. (Fourth time I've done it)  Now he knows why I was bawling my head off when he called me during Ty's surgery to get his old port out.
 Ty wasn't really in the mood to wake up for a while
On the way home he was hot and red faced...but that went away after about an hour.  He had a little nap on the way home too, and had some lucky charms and sprite.
 And if you saw him tonight playing with the neighbors you would never know he had surgery today!  My tough little buddy!
 I know right!  Who rides their bike the same day they had surgery?...don't worry, it still has the training wheels on
Showing his friends his new port...see all the yellow?  They used enough Iodine to clean the State of Utah, he's got it from his belly button to his ear...literally  His port sticks wayyy out, it will be interesting to see how that goes.  Hopefully he will be used to it soon, he hasn't complained about it yet so maybe he is already used to it.  I am glad this day is over!  I have been dreading it for months, and of course it wasn't as bad as I thought it would be. 
 Now here's to hoping for two years of an infection free port!!! 
When we got home the kids had already been fed dinner by my awesome visiting teacher! 
 Thank You!!
And thank you for reading, caring, praying, helping us, being great neighbors and friends and family, donating to and coming to our CureSearch walk, and everything else!!