Austin get his wish!

Austin has been so excited to hear about his wish being granted from Make a Wish.  Austin made his wish several months ago to go to Walt Disney World.  His "wish grantors" came over to our house and helped Austin make it official.  Since then they have been leaving little goodies on our front porch about once a week "teasing" Austin without telling him if he really got his wish.  At the same time, Make a Wish called me and asked if they could use Austin's picture for their campaign with Lin's Market here in St. George.  When one of our friends let us know they saw Austin's picture at Lin's, we had to go check it out.

 Austin was surprised and amazed at the huge number of stars on the wall spelling out his name and hanging from the ceiling, each one representing someone that donated money to Make a Wish.  Austin had his picture taken with the manager of the store and was treated like a celebrity.  It was so fun!  The employees were excited to meet Austin and put a real kid with the posters and the story.

Finally after weeks of teasing Austin, his wish grantors, Heather and her son, Colby came to our house and sent Austin on a scavenger hunt to get his wish granted.  They didn't know it, but this was one of the best ways they could have announced this to Austin because he loves puzzles and treasure hunts.  So off we went on the hunt, stopping at 3 different places until we ended up at Lin's market for the big party.  

Recognizing the Lin's employees that helped raise money for Make A Wish

 With a cake, balloons, and lots of cheering, they announced that Austin would receive his wish to go to Disney World.  He had the biggest smile on his face!

Cake time!

So let the fun begin!  We are so excited to go.  A huge thanks to Make A Wish for granting Austin's wish and for Heather and Colby and Lin's for making it happen.

A little TPA goes a long way

Time again for Austin's monthly blood draw and checkup with our Pediatrician.  Usually no big deal.  This time when the home health nurse came to draw Austin's blood, she couldn't get his port to draw back.  She poked him twice, much to Austin's anguish.  Poor kid just hates it.  He consents to the first poke but the second one is more pain mixed with stress and fear as well.  When the nurse still couldn't get the port to work we headed to Dr. Marsden's office for his checkup.  That went well so we headed over to the Pediatric floor to figure out the problem with his port.  

So thrilled to be here :(

 Our favorite nurse, Jason, poked the very bruised port site but once again no blood.  So bring on the big guns.  TPA or Activase is a drug used to dissolve blood clots in central lines.  The idea is to inject the drug just into the port and let it break down the clot.  So you put it in and wait...and in our case... wait...and wait.  

Using the "freezy spray" to numb his skin before the poke

Trying to get the port to work--no luck

Wasting time waiting for the TPA to work

Austin's favorite way to pass the time---grilled cheese, sweet potato, and cake--weird but yummy

ahhhh....finally!!!  So happy to see that blood!

Finally after about 4 hours and multiple attempts, FINALLY we got blood.  I can't tell you how relieved I was to see that precious red stuff.  If it hadn't worked we would have been on our way to Salt Lake for surgery and a new port.  Yuck.  So grateful all was well in the end.

Austin's stats for this month---Weight 44.2 kg (same as last month), HCT 35.2, Platelets 238, and ANC 2100 (!)  We knew his counts would go up since we had stopped his Chemo for 2 weeks when his feet were bad.  

Happy 10th Birthday Austin!!!

 I can't believe this amazing kid is 10!!  He is obsessed with a game called Minecraft and he designed his cake based on that.  It was super yummy.  Happy birthday my sweet boy!

Playing with his gift from his Uncles Blake and Bryant

Blood and Bone Marrow Drive

In honor of Austin's one year anniversary of fighting Leukemia as well as to recognize September as National Childhood Cancer Awareness Month, we teamed up with the Red Cross for a blood drive.  One of my co-workers, Lisa, helped coordinate with the Red Cross and we advertised in the hospital where Kevin and I work.  Several of my co-workers also volunteered to help out.  We couldn't have pulled this off without all these wonderful people and I can't thank them enough for their support.

Kevin's turn

 I also contacted Be the Match and they sent me some packets for people to swab their cheeks and be on the National Bone Marrow Registry.  This is close to my heart because if Austin does relapse in the future he will need a Bone Marrow transplant.  

Shaylyn manning the Bone Marrow Registry Table

Giving my blood

Some of my NICU family--these people are amazing

The blood drive was a great success!  The Red Cross had a goal of 16 successful donations and we were able to have 24.  Thanks so much to all those that donated.  I encourage everyone to donate regularly.   It is one of the truly selfless things that you can do for another person.  One donation can save up to 3 lives.

One Year Cancerversary

Today marks the one year mark of Austin's Leukemia treatment.  On this day one year ago we were sitting in the Oncology clinic being overwhelmed by what we were being told.  No parent should ever hear those words: "Your child has Cancer".  The last 12 months have been full of ups and downs, joy and sorrow, lots of pain and stress and tears.  A few ramblings about what I have learned in the last year:

1.  I hate Cancer!!!! Nothing scares me as much as wondering if all of this torture will in the end be powerless to stop the Cancer from returning and killing my boy.  I have lost hours of sleep in the last year worrying and worrying.  I hate that Cancer has done this to us.

2.  All you need is love.  I have been amazed at how many people care about my sweet boy.  Whether it's by donating money, cleaning our home, bringing us meals, or just big hugs and well wishes, so many people have helped us out in the last year. I wish I could thank everyone individually but will leave it with a huge, heartfelt thank you.  

3.  No matter how bad things get, it could always be worse.  Joining this crazy cancer world, my eyes were opened to all the different kinds of Pediatric Cancers.  So many of them are much much worse than what Austin is going through.  I am so grateful that he "only" has Leukemia.  It's all about perspective.

4.  Being a parent is hard.  The hardest thing I have had to do in my life is watch Austin be sick or in pain or be poked while I am powerless to stop it.  I dread giving him his pills as much as he hates taking them because I know they are slowly poisoning his body. I feel immense guilt when he is throwing up or in pain.  No parent should ever have to watch their child suffer.

5. I am not in control.  This is probably the hardest lesson to learn.  It brings sheer panic as it dawns on you that nothing you can do will change the circumstances, that you are powerless.  Ultimately learning this lesson can bring incredible peace because if you can accept that you are not in control, you can then accept that God IS in control.  This is a daily lesson for me as I try and try to demand that I AM or at least should be in control.  

6.  Humility is a tough pill to swallow.  I have always had a hard time accepting help from others.  I am used to being the strong one, the one that others look to.  Admitting that I need to accept help from others is very humbling.

7.  I am not superwoman...and that is ok.  Sometimes the house doesn't get clean, the laundry piles up, I can't work extra hours at work, a church calling is put on hold...in fact some days the only thing that I have to show for the day is that the kids were fed (even if Mcdonalds did the cooking).  Some days I can't muster much more than survival but that's ok.

8.  It's ok to cry...in fact it's good to cry...a lot.

9. Never underestimate a Momcologist.  Nobody knows their kid better than a Mom.  I am grateful for doctors that listen when I say something just isn't right or are open to doing things my way.  I admit to hours of on-line research and obsessing over ways to make things easier for Austin.  After all there isn't an Oncologist on the planet that cares about my boy more than me.

10.  Time goes on.  As hard as the last twelve months have been they have gone by quickly.  Austin has 2 1/2 years left and while that sounds like an eternity today, I know it will go by fast.

What Austin says he has learned in the last year.  These are directly from him, I asked him to think of some good things as well as bad.

1.  I hate Cancer!!!!!!!!!!!!!!!!!!!!!!!!!!!! (he typed the exclamation points)

2.  I have to be patient.  3 1/2 years of treatment is a long time!

3.  I like to be hypnotized.  It helps me relax and feel less pain.

4.  I like how many people care about me and am amazed at how many care.

5.  I like how I feel after getting blood.  My energy comes back and I feel better!

6.  Good things about having cancer:

         A) Camp Hobe--I loved this week long camp!

         B) Make a Wish-- I can't wait to go to Disney World.

         C)  Meeting the great people at the hospital.  I love the Child Life Specialists, they make my treatments easier.  It was fun to spray Michael with silly string.

7.  Bad things about having cancer:

          A) Being poked--having my port accessed, getting lumbar punctures--I hate it EVERY time!

          B)Being bugged ALL THE TIME.  Doctors appointments, home health nurses,  vital sign checks, "How do you feel?", Mom taking my temperature...over and over.  Sometimes I just want to be left alone.

           C)  Taking pills...a lot of pills...every day....yuck.

             D) I hate feeling sick.  I really really hate throwing up.

So here's to one year down, two to go.  Keep fighting my Cancer Warrior!  I love you so much and am so proud of you.  You will beat this!  Keep that gorgeous smile of yours.  It brightens my day and makes us all happy.

Sad Feet

One morning out of the blue, Austin's feet started bothering him.  The skin on his toes and balls of his feet are sloughing off creating red, angry wounds.  In addition, the cuticles around his toes are sloughing off and becoming infected.  To top it off, he has a nasty, painful rash on his hands.  I have been really worried because its a great way to get a nasty infection.  He was started on an oral antibiotic (Keflex) and we checked his counts again.  His ANC was only 800 and Platelets 142 so the Oncologist decided to hold his oral Chemo for two weeks and recheck his counts then.  I went to the wound clinic at the hospital where I work and they gave me some special foam to put on his feet and some bandages to cover it up.  When I got done wrapping his toes he was left with two colorful ice cream cone feet.  It didn't do much to help his feet heal, but it was funny and entertaining to take pictures of my handiwork.  He probably thinks his Mom has lost her mind.  

Ice cream cone feet

Starting School

We had a fun summer but finally it was time to head back to school.  Madison is in 2nd Grade and Austin is starting 4th.  After such a rough year last year, I am excited for Austin to have a better year.  These guys look so cute in their uniforms!