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

Sunday, October 30, 2011

Happy Halloween!

We decided to get his CBC today instead of Monday cause he was starting to bruise and petechiae and we were getting worried that he might get too low before Monday rolled around.  The results: WBC 0.4, HCT 20.7, PLTS 20, don't have his ANC results yet but they will probably still be around 100 or lower.  So Brady took him up to the ER for a type and cross to get his blood matched up and then we go up later today so he can get a blood transfusion.  Its just for red blood, platelets aren't stellar, but not low enough to do a transfusion...and whites he just has to build back up on his own.
We'll post some more Halloween pics tomorrow after the festivities. 
We'll have to be really careful because of his lack of immunites.  I bought a variety of trick or treat candy so we could swap his trick or treat candy with a bag of candy that no one has touched.  He'll keep his mask on and we organized a trunk-or-treat at the park which will be outside and provides less of a risk that we will go to a house with sick people present.  Of course we will play all of that by ear depending on how he feels and what his ANC actually is.  He's pretty young so he won't notice too much if he misses.  He is also used to staying home while the other kids go and do stuff.  It is surprising sometimes how much he understands and how well he goes along with everything even though it really stinks sometimes.  His mellow-ness is a great blessing. : )

So today (Monday) a couple of bruises on Ty's head looked weird...they were larger than yesterday and raised, (the pic doesn't do it justice)  we thought it was wierd so we took a pic and sent it to his home health nurse.  She forwarded the pic to his doc and up we went at 4:00 to the children's clinic for a CBC to see what was up...

Hanging out at the doc's office...yep, just as we suspected, his platelets were a whopping 6!  Normal would be between 140-440.  I organized a neighborhood trunk-or-treat at our park so Ty could trick or treat outside without going house to house...and I knew he would be sad if he missed it...
So we drove from the children's clinic back to the park so he could trunk or treat before we went to the hospital

The trunk or treat was cold but it was a great success!!  We are so thankful we have such an awesome neighborhood!!  It was a potluck finger foods and they brought the yummiest foods!  We had a great time and Ty got a giant bag of candy..which we promptly swapped out for a look-a-like bag of candy I made for him.  (Ssshhhh! don't tell him!  That way he isn't eating candy that many hands have touched...you know, the whole immune system thing)
 CBC today: WBC 0.5, HCT 30.3, PLTS 6, ANC 30!!! yikes! (a normal ANC would be between 1500 & 7300)
Dad took our little vampire straight from the park to the hospital for his platelet transfusion...he took his candy with him of course : )
They give him benadryl and tylenol to reduce the risk of having an allergic reaction to the transfusion...it knocked him out pretty quick

Don't platelets look weird?  They aren't red!
It was a Happy Halloween!!  : )  We hope yours was safe and happy too!!
TUESDAY:  Ty just looked at his job chart and said, "mom I don't have any jobs today" mom: 'oh really', Ty: "it says my job is to drag my candy bag around"  : )

Friday, October 28, 2011

Delayed Intensification Update

St. Baldricks St. Baldricks St. Baldricks St. Baldricks...wondering what that is??  Click on the link at the bottom of this post for more info...Can you believe people shave their heads for Childhood Cancer?
Look!! Celery!!  I feel like a super hero when he eats a veggie.  He's neutropenic right now so we are just trying to be super careful about germs and stuff and crossing our fingers that he doesn't get a fever. We'll take it as it comes though, maybe if we don't make any plans we won't end up in the hospital right?  he he he...if only

Ummm not sure if this is the safest place in the world to have a nap.  Ty's blood counts are pretty low right now which can make him tired...but really he's doing pretty good considering the phase he's in.  Tuesday's CBC~ WBC 0.4, ANC 200, HCT 26, PLTS 155.  Now on Friday they are a little lower at WBC 0.4, ANC 100, HCT 22.4, PLTS 64.  Pretty much no immune system and he's right on the border for needing a blood transfusion so we'll test him again on Monday and probably head up to the hospital for a few hours for some blood depending on the counts.  That's a fitting activity for Halloween isn't it?  I guess he could dress up as a vampire...nope he's gonna be mater, I know we should take advantage of his baldness and do something funny but he's three and has a mind of his own...and I am super ok with that.
His port is accessed right now cause he gets IV chemo four days a week.  Last week there was a little problem with insurance allowing chemo to be done at home so we had to go to the hospital four times.  We got hold of the clinical trial specialist at Tricare though so this week we got to do it at home. We are so glad we signed him up for a clinical trial!  Because of that everything goes through the clinical trial people and they make exceptions that the normal insurance wouldn't make. YAY!  We are so grateful for great insurance. 
He can't have a normal bath when he's accessed so I use those special bathing cloths from the hospital...he hates it. He hid behind the couch so I just brought the bath to him.

He feels pretty good, much better than he did during the first half of delayed intensification. See the cute chappy lips?  I wonder if that is a normal sign of low platelets or if he is just special...he always gets chappy lips when his platelets are low.

You wouldn't know that he is operating on super low red blood cells if you saw him playing outside today.  He doesn't play as long as normal of course, but it sure isn't slowing him down as much as you would expect.

Done today with the IV chemo Cytarabine and will be done Tuesday with the oral chemo thioguanine.  Now we wait a couple of weeks for him to recover and then we start Interim Maintenance II which is a visit to PCMC for chemo every 10 days.  That lasts for two months and then he starts maintenance which I think is oral chemo every day but we only go down to Primary Children's once per month.  I think that will last about 30 months, not sure exactly yet. 

 I have some relatives in Logan, Utah who were inspired by Tyson to hold a really exciting event to raise awareness and funds for Childhood Cancer.  They are absolutely INCREDIBLE!!  Several of them are shaving their heads (yes, some females included) to raise funds for a super fun fundraising group called St. Baldricks.  Ty has a page set up on their website that you can access here.   And the St. Baldricks event that they are holding is at Rocky Mountain Dermatology in Logan, Utah on November 9, 2011 at 5:00 pm.  Address: 550 E 1400 N Ste Q  If you are interested you can click HERE for more information and to donate.  Every little bit helps so if you can even do $5.00 that would be AWESOME!!!  I am ETERNALLY GRATEFUL for organizations like this, without them Tyson's chances of survival would be 10% instead of 95%!!  I can't say thank you enough to the great people who put things like this together. 
THANK YOU Utah Cousins!!! 
And Thank You St. Baldricks for helping more bald warriors survive!!

Saturday, October 22, 2011

Story time with Ty

Ty is doing great!  He vomited a couple of times the day after his chemo (I am guessing from the Cytoxan) but since then he has been eating pretty good (sorry spaghetti, he had to go for something blander this week).  He is now eating hawaiian haystacks for breakfast lunch and dinner and I am happy to say he actually ate celery today!  He hasn't been a big veggie eater since this all started. : )  Right now he takes a chemo pill each night, and gets IV chemo 4 times a week for two weeks.  We don't have to go back down to Utah until the middle of November!  That is bitter-sweet cause we like having him checked out by his oncologist, it makes us feel better, and Mom and Dad kind of like all that time together driving there and back. 

Ty's favorite books are the Fly Guy series by Tedd Arnold...

Tuesday, October 18, 2011

Clinic today

ANC 900!  That was high enough to start his second half of delayed intensification so off we went to clinic this morning...
We left at 5:00 this morning and he slept for a while...it was still dark out when he woke up wanting a movie, the movie was so bright he had to wear sunglasses to watch it.

Ty getting his vitals done, see his smile?  He is starting to interact more with the nurses and docs.  He used to completely ignore them.  He even talked to his oncologist today!  He weighed 14.4kg today! Yay! (31.7lbs)

Brady distracting him while he gets his chemo Cytarabine.  Yep it is a little disturbing that the nurse has to put on special purple gloves and a gown to administer the poison to my 3 year old.  It is to protect the nurse of course, who is around the stuff all day, but still disturbing.

Getting ready for sedation to get his MTX back poke.  He's helping put the monitor stickers on.  He gets ketamine and versed which put him 'under' just long enough to do the procedure.  He recovers pretty quick from it and isn't as groggy and grouchy as he is when he has to go all the way under anesthesia in the rapid treatment unit.

After he woke up we went back to infusion for his other IV chemo Cytoxan.  This is the only time he has to get this one.  He also starts a daily chemo pill today called Thioguanine.  We don't know how all of this junk will affect him since everything he gets today is new to him.  I won't bore you with the complete long list of side affects, the most likely ones are nausea, vomiting, loss of appetite, hair loss, low blood counts in 1 to 3 weeks, mouth sores, flu-like symptoms, diarrhea, abnormal liver function etc etc.  So far he has done really well with all the stuff they have pumped into him so we are hoping things will be fine this time too.   

Just got home from clinic...here is Ty right now at 4:00. Going to clinic always wears him out. See his blanket? I'll take a better pic of it later, it is a very cute 'I Spy' blanket made by a family we know and love. Thank you! We played I Spy on the way home from clinic today. : ) We continue to be humbled and amazed at the love and care people continue to show for Ty and us. 

This week we finally got all the weeds pulled from the garden getting it ready for the winter, Ty found roly poly bugs

And we got to check out the new 'all access' playground our community pulled together to build for children in wheelchairs so that kids of all abilities could play together.  It is called Brooklyn's Playground named after Brooklyn who has Spina Bifida and goes to Kindergarten at our kids school.  Her parents got a committee together and raised like $400,000!  It is a fantastic playground!!

And last but not least the spaghetti that he is still eating for breakfast lunch and dinner.  This particular time we had an argument about whether or not it had enough sauce on it.  I wasn't going to budge and neither was he.  So when I left the kitchen he took matters into his own hands. : )

Thursday, October 13, 2011

Happy Chemo Break

I feel much better!!  No diarrhea and my blood counts are slowly but surely rising!  ANC is 400 today (Oct 13).  My legs are still wobbly and weak but I am much happier and off the couch much more!
I have my own IV pole so I can get my antibiotics at home when needed...I also have home IV chemo coming up next week

My home health nurse is awesome...she lets me help

I got to help dad sort through the apples

There were a lot of ladybugs in the apples

I also got to throw the apples into the smasher to make fresh apple juice (don't worry I don't drink it...can't have unpasteurized stuff...but everybody else likes it!)

Mom thinks I'm too skinny...but that's ok cause I am eating like a champ now.  I've been eating my current favorite food...spaghetti for breakfast lunch, dinner, and snacks in between since the moment I got home from the hospital!

Soooo we are enjoying our chemo break since my counts weren't high enough to go on Tuesday.  Looks like they will be high enough by next Tuesday though so we'll go down that day and fill me up with more junk.  Until then we are having a great time! : )

Monday, October 10, 2011

We Are Home! Swore Farms Corn Maze

We are home!!!  Thank you Gavrila, Brent and Porter for the fun surprises!

As soon as we got home mom made the noodles Ty was asking for while we were at the hospital, they hit the spot and increased his mood...so much that he wanted to come to the corn maze with us!

There is a family friendly corn maze close to our house, we ate dinner and headed right over

It rained on us, but we didn't mind, we were having too much fun!

Swore Farms let me pick out my own pumpkin when they found out I was a cancer warrior
Thank you Swore Farms!!

See his muddy knees?  His legs are really wobbly right now, dexamethasone does that to him...He fell a lot, but that's ok, he just got right back up and kept going, he is feeling really good!  Eating well, drinking well, and talking A LOT!!  That's how we can tell he is feeling good!!

We had hot cocoa and a lesson to finish off family night
Words cannot describe how good it is to be home, to hold my little happy IV pole, hospital bed free buddy.  Happy Day! He is so happy right now!  Priceless!   : )              His ANC is still only 154 but his doc let him come home anyway, he just has to stay on antibiotics until his ANC goes up.  Woo hoo!   He's very excited to hide from Michelle (his home health nurse) when she comes to give his antibiotics.                                        

Saturday, October 8, 2011

Our Day at the Hospital

Saturday, Oct 8th.  Still here of course!!

He had a fever all day yesterday, but it finally went away last night and he feels a little better. He has a dry persistent cough, probably still that darn rhinovirus he tested positive for a couple of weeks ago.  Chest xrays were clear, so no pneumonia and we are still waiting on the blood culture results.  If those come back clean they think it is some kind of virus.  If they don't, well we'll take it from there.  We should know those results tomorrow morning. (Sunday)

They found one band under the microscope today which in the large scope of things does not mean much, but when you are up from all zeros that's improvement! I know that sounds technical but its really not, if you look at a CBC readout (complete blood count) you will find segs, bands, and white blood count.  Add segs and bands together and times that by WBC and you have your ANC, Absolute Neutrophil Count, otherwise known as the number they use to determine your ability to fight infection.  So today Ty's segs are 0, bands 1, and WBC is 2.0 you have to move the decimal of WBC to the right one and that would make it (0+1)x20=20  ANC is 20, which shows up on the results as a zero, but hey I'm counting it as improvement. : )  His other results are HCT 32, PLTS 124, and I think dad said his weight this morning was 29lbs~ up a little I think because they have him on fluids cause he isn't drinking enough

He couldn't get himself to eat his sandwich, but he did have fun cutting it into little pieces. I did get him to eat one bite of yogurt though...yay intestinal flora! : )

The kids came to visit after they went to the community welcome home soldiers day at ISU.  A couple of his Aunties came to visit too, and brought some toys

They had to wear masks.  Isn't that hat cute? Brenna made it, she's making an orange one for Ty

Brooke and Emily took turns decorating the pain scale faces on the white board

Ryan got reaquainted with the Robots game he used to play on the computer

Ty has been pretty grouchy today, he's been asking if I will make his favorite noodles when we get home...something homey to look forward to I guess.  He wanted mom to snuggle so he could have a rest...

and he's finally taking a nap

which is really fun for mom...but not so fun for dad when he comes up this evening for the night shift. he he!  Ty has been asking all day when dad is going to come back.  He likes his fun dad
Last but not least THANK YOU for the prayers, dinners, and concern.  Your love lifts us when things are hard.
*Oh and THANK YOU STEVE for coming over and shampooing the puke smell out of the couch : )