Curesearch Walk

Today was a very emotional day for us. We attended the Curesearch Walk in Salt Lake. Curesearch is a foundation that raises money for Pediatric cancer research. We want to support this cause that we have been forced to be a part of so we got up early and drove to Sugarhouse Park in Salt Lake. Why did I think that this was a good idea? Obviously I like a challenge! Austin had chemo the day before and two days before I had surgery (see I like a challenge), so we both were not feeling good. I was in pain and Austin was tired. As we were walking across the lawn to get to the pavilion, Austin stepped in a hole and twisted his ankle. Really?! Did we just need one more thing? Do we have targets on our backs?

We finally got to the pavilion, Austin limping, after the event had already started and tried to find a place for Austin to sit for a second.

Such a sweet boy, he has a smile despite feeling miserable

We heard some of the ceremony but I was so emotional and tired that I mostly cried through the whole thing. An especially emotional moment was when they released white balloons for the kids that have died from cancer. That was hard, there were so many.

They had all the kids that are currently battling cancer go up on the stage and receive a medal and have their pictures taken. You can see from the picture how stressed I am and how not-excited Austin is to be there. I just can't believe that we are a part of this. I can't understand why any of these precious children have to go through this.

Austin couldn't take part in the actual walk so we wandered around a little, had a popsicle and the kids got their faces painted.

Kevin walked with the others and took a picture next to Austin's picture along the route.

So it was a tough morning. I hope we can contribute more to this cause in the future because they really do make a difference.  Hopefully a year from now, things will be better and we will be able to look beyond ourselves to help others, because the need is so great.

End of Induction

A little Oncology education...(against my will I am becoming an expert).....

There are several phases to the treatment of leukemia, the first one being called Induction.  This week is the end of Induction for Austin.  This is good news because it means the end of daily steroids and a week break off of chemo.  The bad news is that the next phase, Consolidation, requires weekly lumbar punctures so weekly trips to Salt Lake for us.  From here on the most important thing that we will be checking is Austin's "counts".  This means his "ANC" or Absolute Neutrophil Count, his Platelet count, his White Blood Cell count, and his Hematocrit.  To advance in these weeks of treatment Austin's counts have to be "good".  This means an ANC of at least 750, Platelets of 75,000, and Hematocrit of more than 25.  If these counts are too low then we have to wait until they come back up to continue treatment.  This means weekly blood checks. 

Early morning ride to Primary's

We headed back up to Primary's for another Bone Marrow Aspiration and Lumbar Puncture with Chemotherapy.  Austin was checked over by the Oncologist and his labs were drawn from his port.  Happily, we have found the combination of numbing cream and numbing spray that make it so he can't feel the needle.  This has cut way down on the amount of anxiety going into these appointments.  At one point when the nurse asked him if he was ok, he said:  "It's ok, I'm used to this".  Oh how it breaks my heart that he has to be used to needles and pokes but I am so glad that he can handle it without a lot of anxiety.

Getting his port accessed 

Getting checked by the Oncologist

Austin had his back pokes under sedation and did really well.  Plus bonus, he got his flu shot while he was asleep so he didn't have to feel that poke either.  Gotta love the sleepy drugs! 
 

Austin doesn't love the early morning appointments, you can see it on his face,
  he is unhappily putting up with all the nonsense.

Playing a game on the Ipad with the Child Life Specialist

 Today Austin's counts were awesome.  His ANC was 2800, Platelets 268,000, and Hematocrit was 29.  It's not a huge surprise that his counts are up because the steroids he has been taking make them higher so we expect they will drop in the coming weeks.  But the best news from this is that Austin gets to go back to school!!!  As long as his counts are good his body is able to fight off bugs that may come his way.  So while he can, we will take advantage of the time and let him enjoy school.  This is so important to me to make him feel like a "normal" kid.  I want him to argue with me about doing his homework and study his spelling words on the way to school--you know normal kids stuff!  Oh the things we take for granted!  Those "routine" things are dreamed of and craved by those that can't do them.  I am hoping for a couple of "routine" weeks for Austin.  He is very excited about seeing his friends, although he is worrying about what they will think of his bald head.  Please children, be kind!  The Child Life Specialist from Dixie is going to go to Austin's class to do some education and I think that will help.  I know the root of bullying is fear and the unknown so I hope explaining why Austin is bald or why he has gained weight will help.

Chemo is rough on his body, he is always so tired on the way home.

So here's to starting the next phase of Austin's treatment.  One step closer to being done.  We are taking things one day at a time, appreciating the things that are going well and putting up with the things that are tough.  Over all we are very happy with Austin's response and the small number of side effects so far.  Austin is such an incredible boy.  He puts up with all this with a smile on his face (except when he is hungry, then watch out!) and a good attitude.  He is teaching us about what is really important in life, that all we really need is those that we love.  Keep fighting Austin, we need you!!!

I'm Hungry!

 Austin has had a good week.  He received more chemotherapy at Dixie on Friday.  It should be the last dose before we move on to the next phase of treatment.  Accessing Austin's port went much better this week so we were able to relieve some anxiety about that.  His labs dropped a little but not too bad.  Overall, we are really pleased about how well he is doing and the small number of side effects he is having.  The biggest side effect is from the steroids that he is taking.  He is eating--a lot.  They make him hungry ALL the time.  He even wakes up in the middle of the night to eat.  They also make him grumpy, tired, have muscle pain and difficulty sleeping at night.  It's been very rough on his body.  He has gained about 16 pounds in just a couple weeks and most of this weight is in his face and chest.  I hardly recognize him but we joke about it and I pinch those wonderful chubby cheeks and love them all the more.  We are told this is temporary and he will lose the weight when he stops taking the steroids.  

Getting More Chemotherapy

Passing the time while getting Chemo

These steroids make me hungry!

Hair Cut

Today was one of those days that we knew was coming but were not really prepared for.  We knew Austin's hair was going to fall out from the chemotherapy, but it was still a shock to me to see clumps of it on his pillow, on his clothes, in the bathroom sink, etc.  I have been trying to joke about it, to prepare him for it so it wouldn't be a surprise.  I offered to make a mohawk out of his hair and paint it blue or green but he wasn't down with that idea.  Finally I couldn't take seeing the hair everywhere (I told him he was shedding as bad as Hershey).  I told him we were going to get it buzzed but that he could choose who was going to cut it.  He said he wanted a real barber.  I'm pretty sure that is a jab at my not-so-excellent hair cutting skills, but I agreed and we found "Bob's Barber Shop".

Austin thought this was funny because Bob's place is small and has one chair.  He said that if anyone else came to get their hair cut they would have to wait for Bob to be done with him.  I told him Bob must know what he is doing since he has a striped pole and everything!

 It was harder than I thought it would be to watch Austin's hair come off.  After all it's not like we haven't buzzed his hair many times before.  It's just that it felt that the leukemia was manifesting it's hold on Austin.  Until now we could go out in public and no one would know that anything is wrong.  Now when you see Austin, his bald head will scream his diagnosis for all to see.  Now I don't care what other people think, I am worried about what others will say or do to Austin.  Kids especially are brutally honest and not always kind.  I want to shield him from any unkind words or actions.

 `

My challenge now is to build up Austin's confidence and self worth so much that any unkind words will just roll off his back.  I want him to know that no matter how he looks, he is still Austin.  He is still my intelligent, sweet, amazing boy.  The hair will grow back one day but until then we will love him all the more just the way he is.

My Superhero

Austin has felt pretty good this week with just a few annoyances.  He has had some nausea and vomiting, tingling in his fingers, and his eyes are bothering him.  When I couldn't see any redness, swelling, itching, dryness, or any other cause for the pain, I told Austin I would "google" it and see what I could find.  He laughed at me and said, "Isn't that how we got here in the first place?"  He is referring to my habit of researching every symptom he had before his diagnosis.  He, in fact, has a very valid point!  My search turned up just another side effect of the medications he is taking.  No fun!

Eyes hurting

My superheroes

Austin was given this cape for his birthday by one of my co-workers, Cyndee.  Austin loves it so we had to have a little super hero meeting.  Thanks Cyndee!

Happy Birthday Austin!!!

Today was Austin's 9th birthday and thanks to so many great people, it was a wonderful, unforgettable 

day.  Today was Sunday and since Austin can't go to church right now, the Primary from our Ward came to him.  They gathered on our front lawn and sang Happy Birthday to Austin. 

 They gave him a big card, balloons, cake, and lots of kind words.  Austin thought this was really cool and couldn't believe that all the kids came. 

 I was watching the kids faces as they looked at Austin holding court on the front porch.  A lot of them didn't know what to say and seemed a little nervous of Austin (I heard one kid say "Can he talk?"). 

 Austin may not look outwardly sick at first glance so they probably were wondering what all the to do was about. 

 In any case as Austin started talking to them, they seemed to loosen up and decide he wasn't going to bite them.  I really want to thank those that came.  It was only a few minutes to all of them, but it put a big smile on Austin's face and he won't soon forget it.

Nothing better than friends and cake!

We have a tradition in our family that the kids get to help design and make their birthday cake.  For his 9th birthday Austin picked a Halo cake.  Now I don't pretend to get it, but this kid loves a game called Halo Wars.   He wanted a battle scene with the Lego set that he picked out and put together.  We set the battle on an alien planet with rocks and slime.  We invited some close friends over to help us sing and blow out the candles before we cut into the battle.  It was delicious!

9th Birthday Cake--designed by Austin, made by Mom

9 years old!

Last week I put out a request on Facebook for people to send Austin birthday cards in the mail.  You see, Austin (as most kids) thinks it's the coolest thing to pick up the snail mail.  He loves to get it because he is hoping that maybe something will be for him.  So I thought, how fun would it be to get lots of cards addressed to him!

With all his loot

 I thought we would get a few responses, mostly from family and people that are close to Austin, so imagine my surprise to collect 100+ birthday cards and packages from friends, family, and many that we don't even know.

Dixie's Lifeflight team sent a card and this shirt

Austin insisted on staying up to open and read every last card

So thank you to all you wonderful people out there that made Austin's birthday so special.  There is no way to express how grateful we are for all the love and support from people across the country.  Many that we know and love, but many that don't know Austin have heard his story.  Austin has already touched many lives for good.  Kevin and I have talked about this a lot lately, that though we wish we did not have to take this journey with leukemia, we are grateful to see good things come as a result.  In a day and age where people are so concerned about material things, making money and running over anyone in their path; it is refreshing to have so many people reach outside of themselves to help someone in need.  We hope to be able to use this generosity to help others as well as Austin.  For now we will just say thank you.

Dixie Chemo

 Today was our first visit to Dixie Regional Medical Center's Pediatrics floor for Austin's chemotherapy.  It's a comfortable place for Mom and Dad because we work there, but Austin was nervous about what they would do to him, especially about accessing his port for the first time since it was placed.  Right away we met Mike, the Child Life Specialist.  That's a fancy title for someone that plays with kids and makes them more comfortable with whatever is going on with them.  Mike is amazing at his job and immediately had Austin laughing and forgetting about what was coming.  He sat down and talked to Austin for awhile about Leukemia and what it is and what we are doing to get rid of it.  He also talked about how important it is to express his feelings about what is going on and to ask any questions.  

Mike talking to Austin about Leukemia

The time came to access Austin's port and unfortunately it didn't go as smoothly as we had hoped.  The first attempt was not in the right place.  Austin still has swelling from the placement and he has gained some weight in his belly since starting the steroids so the port required a longer needle than at first anticipated.  The needle placement wasn't as painless as I had hoped.  I wanted it to go smoothly this first time because I know he will be even more anxious about it next week.  

Accessing his port--ouch!  

Trying to get the port to work--sometimes raising the hands helps to
 get blood to flow better.  Sadly, it didn't work this time.

Mike is getting Austin to laugh while his nurse, Jason attempts to get his port to work.

The second time around trying to access the port was even more painful.  If he holds my hand and looks at me instead of what his nurse is doing it helps to get through it.  My heart breaks every time I see the tears roll down his cheeks from pain.  I wish I could take it all away from him.  I know there will be many many pokes over the next 3 years and I am dreading it.  I hope it becomes easier but I hate that he has to get used to pain.  His chest was beat up after all this and has an impressive bruise.  At least Austin was impressed with it, he said he thought it was the biggest bruise he ever had.  Way to put a positive spin on things Austin!

Accessing Austin's port the second time

Bruised from accessing his port--because his platelet count is low he bruises easily

Austin had his labs drawn and got his chemotherapy, an infusion that only takes 15 minutes and was pretty anticlimactic after all the fuss to get it started.   The needle was pulled out and we were good to go.  Before we left, the peds crew and some of my co-workers from the NICU came and sang "happy birthday" to Austin and gave him this banner that they had signed.  That brought the smile back to Austin's face.  Thanks guys!  

So our first visit was over.  The best news of the day was that Austin's blood work looked good.  His ANC was 900 which is the best it's been since we started all this.  900 means he is "moderately" immunocompromised instead of severely immunocompromised like he was a couple weeks ago when his ANC was 300.  This means his body is better at fighting off infection.  We know it will go down with the chemo, but today it is good so we are excited.  This means we get to plan a birthday!

Just Chilling

Austin has had a good week so far.  He has had some random annoyances like stomach pain, tingling in his fingers and joint pain in his fingers.  This are all side effects of the chemotherapy that he is getting.  He gets tired quickly but his spirits are good for the most part.  The steroids he is taking have kicked in and he is hungry all the time.  My challenge is going to be getting anything besides carbs in him.  He hasn't been fond of much with protein or color.   He has been planning his birthday cake, something all the kids do each year.  I won't tell yet what he has planned, but it's going to be awesome!  

Chilling with Hershey and Mickey.  Hershey always knows when one of the kids doesn't feel good.  He follows them around and sleeps outside their bedroom door.  Mickey on the other hand just has his spot on the couch picked out and refuses to move.

Hanging out in the park.  It's nice to get out of the house now that the weather isn't so hot.  It's more fun because Austin doesn't have to wear the mask the whole time.