3 stories of bustling

Wednesday, July 20, 2011

Chemo

Anthony and I went to Seattle yesterday for today's chemo.
Everything went well.
He still isn't feeling 100%, but was ok enough to be sedated for his chemo in the spinal fluid (to prevent leukemia from sneaking into the central nervous system).
The monthly Seattle chemo is the time we also start Anthony's monthly steroids.
He'll be gaining a lot of weight throughout the next 5 days, and he'll develop some roid rage.

We're getting carpet in our front room tomorrow!
(So Anthony will stop getting slivers from our wood floor)
I'll post some pictures when we plug the Internet back in. :)

...hopefully before we go to Florida!!

Monday, July 18, 2011

Pool party!!

Our Wish Granters with Make-A-Wish threw us a pool party, to send us off on our trip!
We aren't leaving right away, but very soon. :)

When we arrived, there were boxes and boxes of pizza, huge bowls of chips, candy, and stuff to drink.
Anthony was excited about the pepperoni on the pizza, and he rediscovered his LOVE of chips.

Natalie, Katie, Kelly

A bunch of teenagers in the bouncy house.

Maggie and Shyanne

Courtney, Lilly

Josh--my children were in HEAVEN with sodas available.

John and Lisa, wonderful hosts.

I didn't get a picture of our Wish Granters together. :(

Katie, Kelly

Daniel

Daniel's talking to Anthony on Andy's shoulders.

Anthony was loving climbing the rock steps on both sides of the house.

Anthony hiding behind one of the balloons.

Anthony swinging with John.

Banjo, the cutest little dog. :p

Brian (doing the smoulder), Natalie, Katie, Kelly

I wasn't going to let Anthony swim since he hasn't been feeling great.

But, he acted fine at the party, so I got out the swim diapers Kelly brought.

He was so happy.

In the beverage container...

The awesome cake from Safeway. :)

Teenagers

Lilly tried to get Anthony to eat cake, but he was most interested in holding and looking at Buzz (that was on the cake). The frosting that was on the decoration turned A's hands blue, and they were still blue tonight!

Anthony was so happy to have a cup of chips--to eat, put in the cup, pour out of the cup, then put back in. :)

Lilly and Courtney seeing how long they could stand in the ice after getting back home.

The longest was 100 seconds.

Our whole family feels thoroughly SPOILED already, and we haven't even set foot in the airplane or Florida yet! Our Wish Granters were very generous and outfitted us with some fun and tasty things to help entertain us on our upcoming trip.

Thank you to those who support the amazing Make-a-Wish organization. You help bring joy to families like ours, who haven't had a huge amount of fun with their diagnosis.

Still watching

Anthony feels great, then slumps a little, wanting us to hold him.
He's still not 100%, but doing better than the weekend.
Yesterday, Kelly took dozens and dozens of pictures of Anthony.

Please

Toddling

Kelly was trying to see if taking pictures of herself by the grass would make her eyes look bluer.

Sunday, July 17, 2011

Sick watch

If you saw the post from yesterday and watched the videos, you'd be amazed today that those videos were just from yesterday morning.

Anthony woke up yesterday with a runny nose. So much snot. He was a little lethargic, but still wanted to play.

By afternoon, he was just laying in different laps (that's where he goes for comfort). By late afternoon, his temp was climbing, and he vomited twice. His lips changed color just a tad bit.

The second time he vomited, I was in another room. The children said it looked like he couldn't breathe. I think he was gagging on phlegm. Poor baby.

Worried about oxygen saturation more than anything else, we headed to the ER to have him checked out.

Anthony's temp was still HIGH, but not a fever. So, we didn't need to do a blood draw...his oxygen saturation was excellent, and his lungs sounded clear. The doctor released us.

Just as the nurse came in with discharge papers, I checked Anthony's temperature one more time since he felt sooooo hot. It was a fever.

Instead of leaving, our favorite stat nurse, Josh, got to come in, access Anthony's port, and draw blood to check for infection. We knew the wait would be about an hour, so I asked if he could receive a bolus of fluids (a bunch of fluid in the IV in a short time). The doctor basically did whatever I asked, knowing we've been through all this before.

Anthony's counts were good, so we were allowed to go back home. If the cultures show anything positive in the next day or two, A will need treatment, but for now we're treating his illness like a common virus.

I'm just so nervous though, with how Anthony's body was attacked by viruses earlier this year. He developed pneumonia, and required a lengthy hospital stay in Seattle, PLUS a month of oxygen at night.

It's so frustating how one minute Anthony can seem fine, but then a bug gets ahold of his immune system, and he needs to visit the ER nearly immediately. It's a mixture of having small airways from the Down syndrome, a repaired heart defect (his heart is still more vulnerable than others), and leukemia. Blasted leukemia. I blame leukemia more than the other reasons.

Anyways, we are keeping Anthony comfortable today with Tylenol. He is allowed to have Tylenol only when he has had cultures drawn within 24 hours. Otherwise, Tylenol could "mask" a potentially-deadly infection by suppressing a fever. So this evening, we'll stop Tylenol again, and see how he does. If there's another fever, we go in for more cultures and start this all over again.

I really don't want Anthony to be sick for long. He can turn for the worse VERY quickly.
Plus, we are getting ready to visit Buzz and Woody in Florida SOON. This trip can always be rescheduled for reasons such as this, but I'd really rather Anthony be well, and he can go have fun.