Friday, September 30, 2011

Some of life with childhood cancer

More childhood cancer awareness.

If you click on this picture, you'll notice a few things that tell about living with childhood cancer.
First, you'd notice Anthony's two straight, horizontal lines on his chest.
Those are pockets where Anthony has had/still has a port-a-cath under the skin.
Anthony is on his 3rd port right now. 
His first port lasted 18 months, then broke.
That was taken out, then replaced with a new port that only lasted 2 weeks before causing a life/death infection.

Because of that infection, Anthony developed at least one serious clot in his neck.
To treat the infection, I had to administer IV antibiotics every 8 hours for 6 weeks.
Plus, to shrink the clot, and to help prevent future clots, I have to give Anthony shots of anti-coagulant (anti-clot) medication TWICE A DAY until he doesn't need a port anymore...in about 2 years.

Next, you'll maybe notice the wrap on Anthony's arm.
That is from the twice-monthly labs that Anthony needs.
We go to the lab when Crystal is there. 
She is an expert on Anthony's hard-to-find veins.
He loves his pretty Crystal.  :)
Labwork is necessary to make sure Anthony's immunity levels are at the right level, not too high, not too low. 
When the counts are high, chemo can be increased in dose.
When counts are low, chemo can be stopped, and anytime Anthony develops a fever, he'll be admitted to the hospital for a minimum of 2 days.

Third, you may notice Anthony's open-heart surgery scar. 
That's not related to his leukemia.
But, it is affected by the leukemia.
The chemotherapy that is saving Anthony's life can be toxic (hurtful) for Anthony's fragile, fixed heart.
No additional damage there so far, but Anthony's right ear has severe to profound hearing loss because of the chemo.

Lastly, you might notice Andy's sticker.
Andy gave blood the day this picture was taken.
When cancer patients go through treatment, they OFTEN need blood or blood products.
I really don't know how many times Anthony received transfusions of red blood or platelets.
Besides the typical medical staff, Anthony's life has been saved over and over...by those who have donated their blood.
Thank you if you have donated.



Ok, a few more things about childhood cancer.

With Anthony's cancer, we travel to Seattle (3 hour drive each way) every 4 weeks, like clockwork. 
NOTHING short of a natural disaster should interfere with this schedule.

While in Seattle, Anthony gets his labwork checked, sees his specialists, and gets chemo injected into his port.
Every three months, Anthony is also sedated so they can INJECT chemo into his SPINE, to protect his central nervous system from developing leukemia.

I didn't take a picture, but we have a FULL shoebox of medicines for Anthony.
Some are chemotherapy that we administer here at home.  Those are in pill form that I crush and mix with cherry syrup.
Some are vitamins.
Some are medications to alleviate possible side effects of chemo medicines.
One is a calcium supplement.
Did you know that one kind of chemo strips the calcium out of your bones? 
If you don't replenish that calcium, it is so simple to have a broken back just from bending over or picking something up...true story, but not us.

One last thing, when I'm waiting for counts from labwork, I am sometimes a wreck.
I overanalyze, and worry when Anthony's counts don't stay stable.
I worry that when he can't have chemo until his counts go back up because of a cold, that he'll relapse.
Then, I worry because his counts shoot sky-high, and I wonder what that means.

Cancer has taken its toll, but we are all so grateful to have our baby still with us.
We are the lucky ones.


Fun and games

Andy, Lilly, Maggie, and I went to the Wenatchee Wild hockey team's opening night.
It was fun.  My pictures were not.
There were a lot of almost-fights.  :)
That's the kind I like...because no one really gets hurt.


Anthony was on steroids and kept finding ways to access the box of chips in our pantry.
Here, he's asking Kelly to open the Doritos for him.

 Another time (same night, same jammies), he had Lilly opening Fritos for him.
He climbs up on the couches, then cuddles with a pillow on his lap....

 Einstein Josh
 Entertaining himself while driving Kelly and friends to Cross Country.
 Anthony in his cozy jammies from Auntie Jenny.
 You can't tell in this picture, but Anthony is grabbing on to Andy's shorts, telling him he wants to be picked up.
 Success!

Catching up on celebrations

Waiting at Hydro Park in East Wenatchee for Kelly to get done with Cross Country practice.
Lilly, Maggie, and Josh were all having fun near the water. 

 Kelly turned 15!!!
I made her a cake (cookies and cream and pictured at the bottom of the post), and H's mom brought pizza and cookies.
Kelly was treated like a princess all day.
And she is our princess.  :)
 We played in the front yard for Family Home Evening activity last week. 
Anthony was cheering us all on.
 Playing in the tomato box with Woddy, Woody, and Buzz.



Working on catching up

Anthony and I brought Kelly and her friends to Cross Country last week.  Anthony was being particularly cute, so Kelly took him outside with her.
He had a lot to say.
All of the other runners were impressed and thought he was cute.  ;)



Watching a movie on his own DVD again.


Josh before his hair cut.
 And after.
 Anthony before.
 Anthony during.
Notice the chip in his hand.
Josh held Anthony's DVD player and Maggie fed him chips.
Lisa would tell them which way she wanted Anthony to face, so they would adjust their offerings accordingly.
 Anthony after.
Still eating chips. 
 Always in the mood to see a shiny fire truck.

Daniel had his first job interview.
All the other employees were impressed he wore a tie.
"No one else has ever worn a tie for their interview."
Daniel got the job.
He'll be pushing carts at a local store.

 We started using Anthony's "bubble" again. 
The cold season has started swiftly and nasty already.
So, when we're someplace where there are a lot of people in a relatively small area, I put the rain cover over the stroller.
There are vents on the side so he can breathe.
This picture was at church.  He's feeding himself cheese absent-mindedly while watching Tangled. 
I don't care what he watches as long as I can get some church before the sick season REALLY starts and we have to stay home.
Life with childhood cancer.
 A wonderful friend shared a huge box of tomatoes with us.
Daniel and I made quick work of them. 
 The girls had school with their stuffed animals.
 Anthony had fun with the Dots box and some tortilla chips.
He ate the chips right out of it.
 Anthony loves therapy.
Here, he is showing D his picture with Buzz and Woody.

Monday, September 26, 2011

Defeated

Yesterday, a friend passed away from cancer.  Far too young.

Today, another person we know is being sent to Seattle for a tumor.  A teenager.

I HAVE HAD IT WITH CANCER.

If you would like to wipe cancer off the face of this earth, the only way it's gonna happen is with research.  If you would like to contribute directly to those researching, go to http://www.seattlechildrens.org/ and donate to cancer research. 

Sorry if my blog's been one big drear-fest lately, it's just that cancer is taking it's toll on my family and my community.  It's time to make it stop.

Wednesday, September 21, 2011

New Beginnings

Our little friend, Adam, is getting a new heart today!!! PLEASE pray for him, his family, and the donor family. They will all need all the prayers they can get.
He was really at the point of needing this. ♥ ♥ ♥

Saturday, September 17, 2011

This beautiful girl has a wonderful opportunity coming her way.  Her forever family and friends are working to raise enough money to bring her home from certain life & death circumstances in her home country. 

I am particularly happy to help a little, because of that gorgeous red hair.  :) 
All kidding aside, Autumn will be in a real family, and be loved her whole life!

If you'd like to contribute to their cause, you can click here and also have a chance to win an iPad2.

Still keepin' busy

A couple weeks ago, I was clearing stuff out of various rooms so Anthony's room would be less cluttered, so Josh could share a room with Anthony, and so I'd have a new sewing room.

The girls had fun looking at family heirlooms and family history items.

Anthony recently re-discovered Snuffleupagus that Nana gave him when he was first diagnosed with leukemia in December 2009.
He's been attacking and eating Snuffle's snout...

And, after a hard afternoon's work of speech, he fell asleep during the eating part of therapy.

Anthony got a fun package from Auntie Jenny.
It had a cool card with monkeys on it, and it made fun monkey noises when opened!





Attacking Daddy

Watching Lilly do games.
 The children thought it was fun to make faces on my pincushion.



Cheering Daddy on, with his Angry Birds game on his new phone.

After a bath, in the awesome towel thing from Tab...he really wanted to get closer into the kitchen so he could wreak havoc in there.

Daniel had Anthony hold his 3DS, then took a bunch of pictures because he thought it was so cute.


Speaking of Daniel, he had his first job interview today.
He applied to push carts at the local store.
One of the managers was saying she hasn't seen any other kids wear a tie for their interviews. 
They were all impressed with my boy.  :)