Tuesday, December 28, 2010


Last night I took Skyler out in the halls for a walk.  Along the way I looked into one of the rooms and saw a little girl with no hair.  She was looking really pale and weak as she tried walking across her room attached to an IV pole.  I also saw an older girl walk down the hall dragging her IV pole behind her, she was limping a little and looked like she was in pain with every step.  As she stood next to the wall to get her height and weight done, she took off her beanie and I saw her balding head.  An overwhelming feeling of sorrow came over me, I just felt so bad for these two.  It felt like a scene out a movie.  I have seen a couple of different shows with kids that have had cancer and it was so sad and horrible looking.  And then it hit me, Im wheeling my son in a wheelchair because its too painful for him to walk, Im dragging an IV pole because my son is attached to it, my son is pale, he is weak, he has no hair, my son has CANCER.  This isnt a scene from a movie, this is our reality.  Skyler is no different from these kids, they are going through the same things.  I know we have been here for what seems like forever and it should have sunk in already, but our world changed so quick and I guess I have been caught up in taking care of all his new needs that I havent really sat down and thought about it.  Cancer is such a scary word.  It only happens to other people right?  You never think that it will happen to you, let alone your child.  Your little innocent child.  Its hard looking around in all the rooms and seeing so many children suffering.  There are kids that have been here for so long and cancer is just an everyday word, and they now call this place home, and then there are kids who are just barely hearing those awful cancer words and are just starting their journey down this road. 

 Everyday now Skyler cries to go home.  He doesnt understand why he still has to be at the "hostible" and why he cant go home to Grandma and Grandpa's.  I hate that I have to tell him he still has to stay here.  His numbers are looking good though so thats hopeful.  His bili is down to 2.9.  Im so relieved.  He still is having high fevers though which is a big  reason why he is still here, but at least they have an explanation for them.  He still has those necrotic places in his liver where the fungus was, and until they are completely gone, which will take months, he will still have fevers.  So more than likely we will be here for another couple of months.  Im starting to get sick of being here just as much as Sky.  I have to admit its starting to wear on me, so I can only imagine how Skyler is feeling.  I wish that once we do get to go home then that will be the end of this but I know thats not true.  We still have three years left of this.


I do know that enduring through all these years of chemo will make it so we can have fun times like these again for many years to come........





13 comments:

Pat Carver said...

Once you leave the hospital the next 2.5 years will feel like a cakewalk compared to what you have been though..

The good times just like the ones in the pictures above are a lot closer than you think.. hang in there Crystal :)

Chelsea said...

It is true what Pat said about the good times, AND the best part is that you appreciate them SO much more! I honestly cant get anything done anymore because I just want to sit and play with my kids and soak them up. The love you have is SO much stronger.

We need to have another girls night soon so you can get out of there! XOXOXO

dailydaph said...

I was just talking about how whenever we're at PCMC we look around and our heart breaks for all of these little ones. Then I remember everyone is looking at us and thinking the same thing. Crazy.

As much as it breaks my heart that Skyler cries to go home, but also nearly bursts that he is doing well enough that he realizes where he is and can communicate to you. You'll be there soon. Daph had a hard time the first few times we went to clinic, but once she realized we could go home after she was so thrilled she did anything we wanted her to as long as she could go home after.

The Buys said...

Crystal you are amazing, my thoughts and prayers are with you and your son!! Do you still have an account set up in his name?

Anonymous said...

I'm one of the 'faceless' Ip's that read your blog...you're in my prayers. Actually I put you in a prayer circle so you have a bunch of crazy women from my church praying for you...

Amanda said...

Cancer Sucks! There is nothing else to say. I know the good times will be coming so soon for you and Skyler. He is a Rock Star!
Thank you so much for being such an inspiration to me and my family. We love you and prayer for you and Skyler every day.

Amanda and Millie

johnjillhuz said...

It is so difficult being there Crystal. You are truly amazing. Living in ICS (I don't know about the PICU) just didn't feel real until we left. I cannot believe that we spent 156 days there. You will have so many more days than us and I am so in awe at your strength and courage. There were awful moments where I felt alone and it just didn't seem fair that a little kid has to go through this. No kid should. I would look out the window and watch life move on for everyone else. I am so sorry that you and Skyler have to deal with this trial. There are blessing that come. I know you've already seen them and I've appreciated so much reading about your ups AND your downs.

The pictures of you and Skyler in the not sick days are just adorable.

lindsay Roscoe said...

What fun pictures. Of anything I have in this life my pictures are my most important world treasure. The picture 2nd from the top you remind me of olive oil from popeye. It's really cute!!

Anonymous said...

You keep haninging in there!! it is going to get better, and soon you will be playing in the sand with skyler. I am so very very sorry that you are going thru this, please know that you have so many people thinking and praying about for you and your angel baby.

zachs mom

Beth.. One Blessed Nana said...

Crystal - skyler is so blessed to have you for his mom. the love you have for him just shines in every picture!

Continuing to pray for God's hand of healing on that precious baby boy!

Kristin said...

Every time I go to the hospital I feel like I'm in a movie, entering this world that nobody else sees, where all the cancer kids gather. I mean, who sees that stuff?? We do. And it's real and it's heartbreaking.

I absolutely love the pictures of Skyler before all of this. What a beautiful way to show us a bit of who he really is, without all the tubes and chemo and surgeries. Thank you for sharing that with us and I can't wait for the day you will have those wonderful times again.

Jen Beckstrand said...

I could not stop crying through this post. It is such a surreal thing. We miss you two so much anytime we are with the family. It feels like Skyler is going to come running up the stairs any second asking to play games and Grandmas house. Cancer has such a wide spread effect on so many lives. Thank you so much for your strength, love, and example to all of us! You two are the most amazing people!

Adria said...

I found your blog through Sweet Brinley's. My 4 yr old just finished treatment for ALL in August. I am sorry that you guys have had such a rough time. Your family will be in our prayers.