Clinic and Ty's funny appetite

Clinic at PCMC was as normal as can be.  It was so routine that I didn't even take any pictures. We drove down, Ty got his zofran and chemos (doxorubicin and vincristine) and we drove home.  All of the meds he takes do funny things to his appetite.  He's not even on dexamethasone right now (that is a whole different set of cravings and mood swings), though he starts that tonight, and it is so weird the things he will eat and the things he won't eat.  On the way home he said he was hungry.  He didn't want anything from In n Out Burger (Brady and I went through the drive through...yummy) and he didn't want the crackers, fruit snacks, or donuts that were in the car already.  When he is nauseous but hungry it is hard for him to decide what to eat, he asks for something and then when it is right in front of him he just can't get himself to eat it.  He lost some weight this last week so we have been more attentive about trying to get him to eat stuff.  We stopped in Malad and Brady put him on his shoulders so he wouldn't touch anything at the gas station (you know, the whole germ thing).  We probably walked the little aisles for ten full minutes trying to get him to pick something out, anything.  I laughed and thought if I saw someone else doing what we were doing I would think what a spoiled kid.  Before he was diagnosed my motto was 'you get what you get and you don't throw a fit'.  It is sooooo the opposite with Ty now...more like 'you get whatever you want and try your best to get it down your gullet'.  He has been lucky cause he hasn't been throwing up, but he often says 'what's that smell'...and when I get him food he takes one look at it and says 'I was just a little bit hungry'. 
Anyway, they took him off the antibiotic even though his ANC is still only 100 because it won't do any good for a cold.  He weighed 14.5kg today so up a little from friday. His blood counts have dropped a little, but not enough to warrant any blood or platelet transfusions.  Hopefully he can just recover now for the next two weeks before he goes back in for more chemo junk.  We'll see how it goes.  Still pretty much no immune system so we are just trying to be as careful as we can even though it seems like an impossible task keeping germs away from him...especially with other sick kids right here in the same house!  We are doing our best though and shrugging our shoulders at what we can't control.  Thank you thank you thank you for the dinners, prayers, babysitting, well wishes, and donations to childhood cancer charities!  Your love and care means a lot to us.

We're Home! HopeKids Wasatch Adventure and Hospital stay

WE ARE HOME!!  YAY!!  We love to be home!  It is funny how much you can miss the mundane in life when suddenly you don't have it anymore!  I guess it is kind of like Brady coming home from Iraq and feeling overwhelmed with gratitude as we sat in the church at Stake Conference.  We don't even notice how nice it is to sit inside a church surrounded by hundreds of people who love you and love the Lord because we do it every Sunday.  We are continuously being reminded of how much we are blessed and how good we have it!   Life sure does throw you curve balls once in a while but it is amazing the peace we feel and the blessings we can see no matter what is going on in life.  It just reminds us how much we need prayer, scripture study and family.  If we have those then no matter what...LIFE IS GOOD!! : ) 

So now, Ty's ANC is 200 which is very low called neutropenic.  It basically means his body can't fight germs.  Which is why Rhinovirus (a cold) landed him in the hospital.  That is the only thing that has come back positive on the tests they ran to see why he had a fever.  They have him on ceftazadime anyway just to make sure and get whatever gave him the fever.  We'll do that for a couple of days until he goes back to clinic on Tuesday for more chemo.  Then we will find out if he has to stay on the IV antibiotic for more days or if they think he can be done with it.  He is doing pretty good, still eating if he has had zofran, starting to get mouth sores from the doxorubicin he's on, but they aren't too bad yet.  We'll probably post again on Tuesday after his appointment.

So here we go with the whole germ thing again...we basically have to keep him away from as many people as possible...no child visitors...lots of hand washing and sanitizer and cleaning...and lots of other rules that are too many to list.  Here's how the weekend was...

It isn't flu season so the kids were allowed to come in and visit Ty in his room.  They were so excited to actually see what it is like in there for him.  Tyson and I wore our matching shirts that day even though we didn't get to go to the HopeKids Wasatch Adventure with them.

Big muscles at 4am when I finally got admitted.  5 hours is way too long to spend in the ER...especially in the middle of the night!!  Hopefully next time we will be able to just go to our local hospital where they directly admit us so we don't have to set foot in the ER.  We were admitted to the same room that we were in at diagnosis which was kind of fun...and familiar to Ty.  He wasn't even upset that we weren't going home yet.

Visiting the funny vending machine that tells you vending machine food is bad for you when you push the buttons.

The tech brought Merin some Doritos too...she was loving the hospital life!

Brady stayed with him the second night and the day until he was discharged from the hospital.  Tyson thinks his dad is the coolest cause he let him watch a movie to go to sleep.  They also played xbox to their hearts content.  Mom got to hang out at her sister's house with the kids (Thank you for letting us invade your house for the weekend on short notice!) and Merin and the other kids didn't mind having mom around one bit. ; )

HopeKids Wasatch Adventure fundraiser...looks like they got to put Ty's name on something

Adventure walk...woo hoo!

Primary Children's ... Delayed Intensification Days 8-11 ...Neutropenic Fever

Here we are in the ER at Primary Children's!  It's day 11 of delayed intensification.  I got a fever today and since we were headed to Utah anyway for the HopeKids Wasatch Adventure Walk/Run, we went to Primary Children's to see what we needed to do about the fever.  Hopefully dad and the rest of the kids can still make it to the walk/run adventure...Mommy and me are hanging out at the hospital until further notice.  I got my first dose of ceftazadime (IV antibiotic) at 3:30am.

It is a good thing dad was here with us cause mom has no idea how to play playstation games and we were in the ER for five hours before they finally admitted us.  The ER nurse had trouble with my port (4 owey pokes, and she wasn't good at hiding the needle) so they called the IV people to come do it.  They finally arrived and accessed it with no problems.  Ugh!  Mommy really hates it when the nurse is incompetent!!

Daddy quickly distracted me though

Getting a chest xray, one of the ways to figure out what the fever is from.  My ANC is 100 which is very low so I am staying the night.  They finally got us up to our room in the ICS at 4:00am, and I finally went to sleep!  Mom and Dad were surprised I held out that long, but are guessing that I was nervous about what was going to happen.  I went to the ER on Friday night (sept 23rd), and mom is behind in my posts cause the pics below are from before Friday night...

Me and Oliver at clinic on Tuesday the 20th.  He is a special dog who visits patients at the Oncology clinic.  I got my second dose of doxorubicin and vincristine today and I got to stop taking the dexamethasone for a week.  Not taking dexamethasone is a good thing (I'm way grouchy on it) and a bad thing (it increases my appetite) since now I am losing weight.  I only had a couple of really hungry days on the dex in the first place and now on Friday the effects of it have totally worn off and I only weigh 14.2kg!! I lost like a whole pound between Tuesday and Friday.  Tuesday I weighed 14.6kg.  Mom and Dad were surprised cause it seems like I was still eating pretty good.

They have a funny vending machine at Primary Children's that gives you advice about not eating vending machine food, you push a button and it tells you something funny about how that food isn't good for you.

Can you tell I like my dad being home from Iraq??

Helping daddy

Here is me on my dexamethasone days, mom made about 5 frozen pizzas in a two day span.  On dex when I get an idea in my head of a food I want I don't stop talking about it until mom makes it.  I crave rich salty foods like pizza and pasta.  I even got to go to Costa Vida for my favorite dex food 'black beans, black rice, black chicken' (sweet pork burrito).  I was shaking with excitement as I ate it.

Daddy's Home!! Delayed Intensification Day 4

Daddy's Home!!  That's me Tyson peeking over his shoulder

And here we are two days later at my clinic appointment.  I've been asking about when daddy is going to come to the horsey doctor with me again and finally he is here!

Waiting for my chemo to come in infusion.  I got to decorate a bird house.

I am super cool watching Magic School Bus in dad's sunglasses

See my bruises?  The day I started Delayed Intensification phase I almost immediately turned pale and started bruising, the chemo knocks down my blood counts.

Getting ready to take my meds...the first couple of days were hard cause I haven't taken pills for a couple of months, but now I'm taking them like a champ again.  Mom forgot to add my zofran pill to this mix.  Zofran helps me feel more like eating...the doxorubicin has done a number on my appetite.  I weigh 14.9 kg now...times that by 2.2 to figure out pounds.

When I first started learning to take pills root beer was the only thing that helped me get them down...so now I get root beer every time I take my meds.  A strawful of rootbeer helps the medicine go down...

Delayed Intensification and Cancer Fighting Friends

We had a great visit to the horsey doctor today!!  We started Delayed Intensification today, the 'bad' phase of treatment.  I started taking Dexamethazone today...boooo.  If you want to see all the stuff I get during this phase you can look it up in my June 3 post called 'medicine regimen'.  I have felt a little sick this evening, but ate dinner so things are looking good so far...it will take a few days for the side effects to set in which will most likely be...lower red blood cells and platelets, lower ANC (infection fighting white blood cells), extreme hunger, mouth sores, hair loss, water retention, joint pain, tummy aches, nausea etc...  We'll see how it goes cause every kid reacts differently. 

We met another cancer fighter today, his name is Tucker.  Ty was admiring his very cool toy in the waiting room.  After Tucker did his vitals and was getting ready to get his port accessed  (which is why his shirt is off...you can see the numbing cream on his chest so the giant port needle doesn't hurt...Ty does that too) he came back out to the waiting room and asked me if it was ok if he gave his toy to Tyson!  There is just something about these cancer fighters that is so special, and here is a great example.  This is his second time fighting cancer.
 PS, just FYI we call the giant port needle a 'magic sticker', Ty doesn't know it is a pokie. Let's keep it that way.

So here's what we did at clinic today...I weigh 15.0 kg now. We found a sticker book and I had a great time getting the stickers in the EXACT right place...my doc even noticed how I was making them perfect.

Getting all my 'stickers' on prepping for sedation.  They give me versed and ketamine while they do my lumbar puncture.  I was very happy and cooperative at clinic today...I think I was glad to see my normal doc...and I'm getting used to the idea of going to the hospital and not getting pokies.  I'm starting to look forward to trips to the horsey hospital with happiness!

Here's me waking up, I like the lighter sedation, it still makes me tired for a while, but not as grouchy.

Then we went back to infusion at the clinic and I got zofran and vincristine and doxorubicin.  Mom took a pic of the dox going through my line cause it was red.  I wanted to sit on her lap cause I was so tired..so this is the best pic we could get.  I watched Clifford and sipped sprite.

While we were waiting for our Pharmacy meds we went up to meet another three year old A.L.L. boy.  He was diagnosed a couple of months after Tyson and I've been talking to his mom on facebook...comparing notes and stuff.  It was fun to finally meet them even though they were there because he isn't feeling well...his name is Matthew.  We are praying he gets to go home soon. Thanks for all the prayers, help and well wishes!  That means everything to us!!  We still don't know exactly when Brady will be home, we'll keep you posted on facebook.  We really appreciate the people who bring us dinner on clinic days.  Today a family made us authentic food from Ukraine!  It was fun to taste new things, and very yummy!!  Thank you!! 

Last Treatment of this phase! Aug 29 2011

Done with my last phase of Interim Maintenance 1.  (If you are wondering what that is look for a post in June titled 'Medicine Regimen')  We now have a two week break and then we start the dreaded Delayed Intensification phase.  Enjoying our break for now.  I feel pretty good still, almost like a normal kid.  I did puke 2-3 times during this phase but really the side effects were minimal and I did great.  Many of you have expressed a wish to help, I have a great way you can help us..even $5 will make a difference...scroll down for details.

I get lots of 'back pokes' (chemo in the spine).  The wierd thing is the bandaids that they use always make my skin turn brown and it stays that way for a few weeks.  I never have those bandaids on for more than a few hours.  The darker one on the top is from my last LP two weeks ago.  The one under it is almost two months old.  Wierd! 

Me at clinic planning to act like I am dead so the doc doesn't talk to me.  We waited in this little room for the doc to come see us for quite a while.  His normal oncologist is quite punctual...but today she wasn't 'in'.  I was so antsy by the time the doc came in that I covered my mouth when she wanted to look in and wouldn't let her examine me.  I've never done that before.

One of the things I did to keep myself busy while we waited.

Finally the doc came and we got to go back to infusion for the chemo.  This is what my power port looks like accessed.

Watching TV while they pump me full of vincristine and mtx...they didn't cover up the methotrexate this time...strange how different nurses do different things sometimes.

Daddy will be home soon!!! We are so excited!!!  For now we are just hanging out and loving life.  It really is true that you can follow the idea: "Come what may and Love it"~Elder Joseph B. Wirthlin

We are already seeing blessings come from dealing with the things we deal with.  One of them is the blessing of associating with some of the greatest people in the world...other cancer kids and their families.  Some of them have lost their young loved one to cancer already, and are still doing what they can to help others in the cancer world. 

Goofing around at home...we tried to make a pyramid

And we did a belly laughing chain