Sunday, April 24, 2011

Skyler celebrated his fifth holiday in the hospital today, in isolation nonetheless.  As sad as we all were about being here for Easter and not being able to do our big Easter egg hunt with all the cousins, we decided that we were going to make it a good one even though Skyler wasnt allowed to leave his tiny little room.  Last night we set out Skyler's Easter basket and set out carrots for the Easter Bunny too.  Skyler decided he wanted to leave a trail of carrots for the bunny starting from outside our door leading to his basket and then my bed (dont ask me why he wanted the bunny to go to my bed..silly boy) He also drew a map for the Easter Bunny so he knew where to go.  During the night he still has to have his vitals taken, get hooked up to his IV meds, unhooked, labs and cultures drawn and re hooked up to his IV meds, so I was worried the Easter Bunny might get caught.  But luckily he came in ate his yummy carrots and left presents without being heard.  Skyler did wake up in the middle of the night though and saw in the dark that the Easter Bunny had come already, he started laughing and kept saying "Wow that bunny is a fast one and he left a ton of stuff!"  It was so cute the way he was so excited but he knew he shouldnt be looking so he tried hard not to and just went back to sleep.  When he woke up he finally got to see what the bunny had left.  The staff also left a basket of stuff for him too.  Later some of my family came up to celebrate.  Since kids under 14 arent allowed on the floor just my mom, dad, two brothers and sister in law came.  My mom brought up a yummy lunch (thank goodness for no hospital food) and we played pin the ears on the bunny, did a pinata, frosted a bunny cake, and then played a little Mario on the Wii.  We were also going to do an Easter egg hunt in here but Skyler got too tired.  We had a few melt downs along the way but overall we had a great Easter.  Im grateful my family could come and celebrate with us.  Happy Easter everyone!!

As for an update on Skyler.  He is still having really high fevers every 8 hours, so no improvement there, but he is actually off oxygen completely.  I havent even had to give him any blow by for a couple of days now!  I am so grateful for this.  He does have a cough now that is getting worse everyday.  The doc said that he may just be trying to cough up and clear some fluid that was in his lungs.  We still havent heard any results back from Washington, but hopefully tomorrow we will.  Dont hold your breath though because one thing I have learned about being in the hospital is that things always take longer than they are supposed to.  They did do another CT of his lungs the other day to see what the nodules are doing and they have stayed the same.  Im sad they are still there and havent gotten any smaller, but at least they arent any bigger.  As hard as it is, Im trying hard to look at the bright side of things.  So even though he may have two very serious infections going on and we may be here for awhile, at least his cancer is still in remission, he is off oxygen, and we are up in ICS not the PICU.

           Here is Skyler putting out the carrots for the Easter Bunny

The trail of carrots...

Can you see those two little carrots in front of our door?  Cute huh?

Here he is drawing his map for the bunny

He even put an X by my bed to mark the spot saying thats where he needs to stop

Here he is looking at all of his goodies.  He thought is was hilarious that the Easter Bunny brought him underwear.

He said he didnt want candy from the Easter Bunny (the chemo makes sugar taste yucky to him) so he got peanuts and other snacks in his eggs.

Even though its Easter he still has to do all of his normal hospital stuff

This is my mom with the food she brought us.  Thanks mom!

Skyler thought it was yummy too! Dont mind the hair, he is starting to lose it so its in a funky stage.

And this is one of his little melt down moments. 

My awesome family about to pin the ears on the bunny.  Skyler thought Ty looked funny

And this was the result, not too shabby!

I forgot to bring a bat for the pinata so we called Kids Crew (volunteers) and the only thing they could find to hit it was a guitar.  It worked and we only had a couple minor injuries.  Look at my mom's face, I think she was scared..haha

Sky is the one that broke it open.  Way to go buddy

Skyler helped frost the bunny cake, but most got into his mouth.

This is Skyler's loot from the pinata!



lea said...

You have such a neat family! Im so glad you have such a neat support system to help you through. You are amazing...staying positive is tough but you do a great job. Im so glad Skyler had a good easter. (love the carrot trail cute)

Erin said...

Thinking of you all the time! Happy Easter.. !
Love, Kace and Erin

Briana said...

i agree with lea - your family is so great! i'm glad skyler could have some fun on easter - you guys deserve it!! his trail of carrots puts such a smile on my face. :) sweet, sweet boy!

and i'm so glad to hear that he is off oxygen. hooray for a step forward! i hope you guys hear something soon from WA!

Chelsie said...

You guys are so great. I've been thinking a lot about you and been so heartbroken that he's having such a difficult time. He's a fighter. He fights cancer. He fights infections. He fights the anger and sadness of not being able to do normal things. And he's done such a good job at that last one that I think a lot of us forgot he was even doing it. He's done it so long it is no wonder he's struggling a little. he's lasted way longer than I would have. WAY LONGER. And he's still fighting- his anger points to his resilience. It might be a sad thing, but it shows he's strong and he still cares. he hasn't given up. He's just a little pissed. And after all he's been through, he deserves to be a little pissed.

Yay for being off oxygen! When you guys get home it will be warm and green. You will go on walks, to the park, to the zoo, everywhere! Even if you were home, you couldn't do that now. at least not comfortably!

Daph was diagnosed almost a year ago and it was nice to come home several weeks later to nice weather. We couldn't go to enclosed spaces (the grocery store, etc.). But we could go to the park! Even just to sit on a blanket and blow bubbles!

Wow. this is way longer than I anticipated it would be.

keep up the good work, Beckstrand family! We all love you!

Erin said...

Crystal, you do such an amazing job of keeping things fun and as close to normal as possible for Skyler. He's one lucky boy to have a mom like you and a great extended family.

Skyler's trail of carrots is so cute and made me smile, especially the little map with all the carrots on it.

No extra oxygen requirement is great news! Hopefully an answer will come through from Washington today so you can get Skyler's lungs cleared up.

Thinking of you both.

Erin & Nolan

Piano Mom said...

Ahhhhh, these pictures are killing me. He is so sweet and cute. I am so happy that you were able to have a fun celebration for him. I was thinking about you guys yesterday and I was sad that Skyler was in ICS instead of enjoying some Easter fun, but seeing these pictures just helps us all understand that we can find the silver lining amongst the hard things in life. You guys really made the best of a tough situation. I hope that you get some biopsy results soon!

Anonymous said...

Crystal he looks so great and I loved the trail of carrots. He is such a remarkable boy and so strong. I am also glad that you have such a great support system. Stay positive.

abound said...

I am humbled by this site. You make it seem like you would do it all over again if you had to by each and every picture.
Richard Hobart