Clinic today...Interim Maintenance II Day 1

We really enjoyed the break we had between his last chemo and the start of this new phase, Getting a routine blood test here, it's so routine now that we didn't even hold him to get accessed, he just layed there and let her poke it in

Ty felt pretty good, we even took advantage of a semi-warm day and went for a bike ride

He still prefers bland foods like plain pancakes which he's been asking for each night at bedtime (yep, he's smart, he knows that if he asks for food we say yes and thus he gets to stall bedtime...but he eats it sooooo win win)

So here we are on our way to clinic at PCMC bright and early.  I told him to look at the sunrise, it makes the clouds pink.  He looked and said in a very you are dumb mom and I am smart way,  'the sunrise makes the sun come up'.

Waiting for the nurse..they have cool water bottle floaty thingys

Here's how I prep his port for the access poke...four bandaids with the cotton thingy ripped off so it doesn't soak up the numbing cream.  Yep Phineas and Ferb bandaids are a must. : )

This is what the port looks like accessed, the port goes right up against the skin so when you access it is is a very shallow poke.  Then you have a tubey that you can get blood from and put stuff into whenever you need.  The sticker that they put on to keep it in place and keep it sterile is the worst part of it...it hurts when they take it off

In infusion getting the methotrexate and vincristine.  You can see the MTX covered up if you look close, it is light sensitive.  This is the part of this phase I wasn't expecting.  Looking at the protocol on paper it looks exactly like the phase he was on right before delayed intensification, called Interim Maintenance I.  Not so we found out today cause they started him today on 2/3 of the highest dose he got in Interim Maintenance I.  Which means as they gradually increase the dose every 10 days we will be much higher than we ever were in that phase, increasing the likelyhood for low counts, nausea, and mouth sores.  Darn!  He did so well in that phase that we were so looking forward to having high counts and feeling ok during the holidays.  We'll see how it goes.  He had a headache on the way home and puked a couple of times, not sure if that is from being sedated or the chemo, or a combination of the two.  Hopefully he can keep something down later today.

Getting ready for sedation, a few extra stickers and stuff to monitor his vitals

He doesn't really like this part, but he tolerates it.  He won't lay down until he is too out of it to keep himself upright.  They give him Versed and Ketamine

Coming off sedation...right here he is telling me I have five eyes.

So now we are taking it easy, watching Phineas and Ferb and hugging the kiddies that we missed all day.  Some very awesome people are bringing dinner, Thank You!!  and we just snuggle with Ty and wait and see how he does.
 On our way home I got a text about an upcoming Idaho moms with cancer fighting cuties dinner...yay!  There is something really therapeutic about being able to chat with other moms who know what you are talking about.
Daddy and I enjoy the drive to and fro cause we get to chat. I retold all of the details of Ty's diagnosis which brought up lots of memories and emotions that I haven't thought about for a while.  Brady told me some of the details of his experience of getting the news abroad as well. It's strange to remember life before I heard the words, "we did see blasts, and it is Leukemia".  Reminds me of how blessed we are, how many ways the Lord prepared us to be able to handle this, how much love and care we have received over the last few months, and how much our eyes have been opened to the great blessings that come from stuff that is hard.  It really does help push out of your life the things that don't matter. We LOVE the little bald warriors and their families and see so much sickness and heartache but we see so much good too.  So much good.  Cancer really does have the potential to bring out the best in people.  We are so thankful to witness it...so thank you!
Oh, and today's stats...Height 92.4cm(pretty much the same as diagnosis), weight 14.7kg (32.3lbs)  WBC 2.1, HCT 26.4, ANC 800, PLTS 256 RBC 3.06
PS  this video was done by Ty's second cousin Sean...for more info on the St. Baldricks event scroll down to older posts..

UNBELIEVABLE!! St. Baldricks Event at Rocky Mountain Dermatology in Logan, Utah

Cancer has the potential to bring out the worst in people...it also has the potential to bring out the BEST...

WOW!!  I cannot put into words how I feel about this event and the many many people who got together in just a few weeks and organized an event that raised over $11,000 and counting... for cancer kids!!  40 years ago children diagnosed with cancer had a 10% chance of survival...now they have a 78% chance of surviving, which still isn't high enough, but much higher because of people like the great people who organized and contributed to this event.  Kids with cancer don't have a voice without them.  Parents of those bald fighters are financially and emotionally exhausted in their fight to keep their kid alive and we couldn't give these kids a voice without the help of Great charities like St. Baldricks and the AWESOME people who participate in their events. 
So to all of you newly bald men, women, and children who might be mourning the loss of your hair tonight I just want to say a giant heartfelt THANK YOU for shaving your head to help give the young bald warriors a chance to stay alive and grow up.

The event was SO FUN!!  We are so glad we were able to go...Hmmmm someone is missing from the pic above...

Oh! Thats because she was busy at the moment riding a pony!

Who knew you could set up a carnival ride on the lawn of a doctor's office?  So fun!! 

Going for another ride and another and another and another!!  The ride operator was so nice to let us clorox wipe the ride each time!

I know I know, his numbers are way too low to let him ride a pony...but how could I resist?  He got a good clorox wipe down after. : )   The people there were so great...

This lady has a son named Tyson who fought cancer, they gave Tyson a very special Tiger that says "Never give up" when you squeeze his paw.  Thank You!!  I wish I had gotten more information about you so I could send you a note.  He's been hugging his Tiger and pushing the button ever since.  He loves it!!

They treated Tyson like a superhero, gave him a St. Baldricks shirt and a whole bunch of Phineas and Ferb bandaids...he was pretty funny about it, he wouldn't take the shirt from them, but when he saw the bandaids he was very excited!  He isn't used to so much attention!  After a while he started hiding whenever someone new wanted to meet him...and Dr. Rob let him have a break in his office while we watched the video of his cool son Sean shaving his head in Arkansas...we watched his brother John shave live via webcam from Oklahoma! 

AND THE SHAVING BEGINS!!  Tyson watching his second cousin Shelly and her 6 year old son say goodbye to their hair

She looks like a doll doesn't she??  Soooo pretty!  And look at how brave her son is!!

Blowing the little itchy hairs off of her cousin : )

Some more second cousins Jenny and Will

This is mom's cousin Marla and her husband Keith

And mom's cousin Dr. Rob before...

and after!!

...And more cousins and their friends too...Can you believe this??  I am just in awe, I am speechless!!

Look at us losers with hair!!  Tyson and his new battalion of bald friends outnumber us by far!! 

If you would like to see a full list of the shavees with their pictures click HERE

Now I know shaving your head is huge for most anyone, but I have to hand it to these ladies, it is a particularly monumental sacrifice for a girl.  It reminds me of how hard it is for those sweet little girls who wake up with handfuls of hair on their pillows and even though that's the side effect of chemo that doesn't physically hurt, it is so hard for them.  I hope many of them can see this picture and know they aren't alone...and that BALD IS BEAUTIFUL!!   

and for Tyson...Happiness is a fresh supply of Phineas and Ferb bandaids  Thank You!  That was a very thoughtful gift!

And I have to add some shavees...who couldn't come to Logan but shaved for Ty anyway...

Noah, our neighbor : )

Peyton, our neighbor too : )  Thanks guys!!

Missy, who's family members shaved at the event. She's away at college, but shaved her head anyway

Recovery from Delayed Intensification

  

Hop on Pop...This is what happens when I make everyone turn off the TV : )  Tyson wanted to have a turn on the bottom of the dog pile...hmmm...how do we explain to him that all the cancer treatment won't do any good if he gets squished to death...

And so we compromised

Ty is now done with chemo treatments for this phase!! Yay!!  He is still napping in the day sometimes...(which I don't mind he he he)...but that means his red counts are probably still low.  We won't know until he gets a CBC tomorrow, he hasn't had one since Halloween. 
That's when we will find out if we get to go to the St. Baldricks event that my cousins are holding for him in Logan.  If his counts are high enough to be 'safe', we are hoping to be able to go.  They were inspired by Ty to do a fundraising event for Childhood Cancer and MANY of them are shaving their heads for the cause...including a 6 year old!!  I hope you are as inspired by that as I am...I couldn't resist adding a little donation myself to his page. : )  Click on the gray words above for more info about it.

Soooo he's feeling pretty good, munchin on one of his favorites...sweet pork burrito...and we are enjoying the break before he starts his next phase of chemo next week. 

Nice snow angel eh?  I didn't even know he knew what that was until he asked me if he could go outside and make one.

Fast Sunday...he still wanted the traditional Sunday biscuits and gravy even though everyone else wasn't eating this morning...so we made a small batch just for the little kiddies

Have we mentioned how fun it is to have daddy home??  Thanks for the love, prayers, concern, and donations!!  Knowing that you care lifts us when we are down.
P.S.  I'll probably just add an update to this post when we find out the results of his blood test tomorrow...

UPDATE: Nov 8th...DANG IT!! Ty's ANC is 200, that means he still basically has no immune system and it is dangerous to have him around other people even if they aren't sick. Germs that a normal person can fight off without even knowing they have them can wreak havoc on someone who is neutropenic, I know, big word that basically means no immune system. Waaaaaaa. I don't have his other stats written down cause they called me with them when we were out, but here's roundabout what they are: PLTS 106, HCT 27, (both of those numbers are low, but not low enough for a transfusion. ..yay!) WBC 1.4

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. : )

MONDAY:  PLATELETS ON HALLOWEEN...

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"  : )