Monday, June 27, 2011

 Well we are back in our little prison call ICS.  I hate the feeling I get when I first walk into our room.  Its not a warm inviting feel, its a cold uneasy one.  Skyler is so unpredictable so when we walk in, its with the knowledge that we will never know when our "sentence" will be over and we can go home.  I hate the not knowing. I hate that I know now that just a one nighter can turn into months.  I know this hospital like the back of my hand and I hate that I can say that.  I cant believe we are still doing this almost a year into it.  I was told after six months we would hit maintenance and our lives could resume some sort of "normalcy"  Well our life has been anything but that and its been over 10 months.  Its so hard to see kids that were diagnosed months after us now in maintenance.  It all just seems unfair.  Unfair that Skyler isnt able to enjoy this nice weather.  I find myself crying alot more lately especially when I see other kids running around, riding bikes, going swimming, just being normal kids.  It kills me that I cant give that to him.  It kills me to see him lay on the couch all day so sick and telling me all the time he wished he wasnt sick and didnt have cancer.  Today when I told him we were being admitted he started bawling and begging me to tell the doctors no.  It broke my heart.  Im sorry Im being kind of a downer but this is how I feel and Im so frustrated with everything right now.  I need answers.  I need the right medicine to make my son better.

Tomorrow Skyler is having a colonoscopy as well as an endoscopy, so they are going in from both ends.  One possibility is that he has CMV thats hiding in his intestines, so they want to be able to look around, take biopsies and rule things out.  If that comes back negative another real possibility is that its fungus again.   We just cant tell for sure if there is some hiding out in his liver and kidneys.  Nothing is growing in his blood but its still a possibility its in his organs.  Also one of his levels came back elevated which leads us to believe that it could be fungus.  They are retesting him to see if it went up again or not.  The problem is that it takes about three days to get the results.  So another waiting game begins.  This just cant be happening again, I would be devastated if this is his fungal infection making him so sick again.  It was this awful infection that almost took his life.  Please please please keep him in your prayers.  I am just so worried right now and Im so sad for him that he has to be put through this again.

14 comments:

Eisha said...

O my gosh, how scary!!! we will put him on the prayer roll down under! What more? there has got to be something else we can do!

nsudburyfam said...

We are always thinking about you and Skyler, always worrying about you, and always here for you - if you ever need anything. We love you both!

Chelsie said...

Oh Crystal! I'm so sorry you're feeling this way! I understand why. Of course you feel down and frustrated. You need a break. Skyler needs a breaks. It is physical and psychological torture. Gosh. I'm with you on this- you guys seriously need some answers. It is getting ridiculous. We're all pulling for you guys.

I just don't even know what to say, other than we love you!

Anonymous said...

Crystal I am so sorry to hear about Skyler. I can understand why you are feeling this way. You both need a break from this unknown so bad. I hope you can find some answers and the doctors can figrue out what to do to make Skyler feel better.

Lacy Allred said...

Crystal I'm so glad you mentioned this because now I feel like it's ok for me to say and think. Let me explain. I follow all of Skyler's little cancer buddies and their stories are touching too, but they just don't seem to struggle as Skyler has. They are in remission going to Disneyland and the pool as if cancer never happened. Why can't this happen for our little Skyler? It often makes me angry or sad. I know I should be joyful, and I am, I just feel so much love for Sky and want him in remission too!

I am pullin for ya!

suzie said...

oh crystal....I don't have the right word to tell how sorry I am that u and mosty..ur liitle, perfect boy is having to endure AGAIN and AGAIN. Makes my heart just ache and break for you and him. I just look at his most sweetest, cutest face and smile and I just can't help but ask ...WHY???? I know our Heavenly Father is so aware of his daughter and son, but I just don't understand.
He is continuially in my prayers and on the Az temple prayer roll consistantly every 2 wks. Oh, crystal......we r praying so dilegently.

U 2 are Amazing!
Much love, *suzie

kate said...

Oh Crystal,
You are so right it is so unfair. I hope and pray that you guys will get a break here soon.

Erin said...

Crystal, you definitely don't need to apologize for being a downer - you said everything we have all been thinking. Why, oh why can Skyler not catch a break and get on with the "easy" part of treatment. Why does everything bad happen to him? We have questioned that so many times.

Do his counts warrant another bone marrow biopsy? Have they discussed that possibility? We will pray with all our hearts that this isn't the fungal infection coming back and that they can figure out what is going on with poor Skyler. I wish there was more we could do.

Love Erin & Nolan

Dave, Cadance and Family said...

I am so sorry to hear about Skyler. Sending prayers to you and him!!

Briana said...

I totally second what Chelsie said about how this is physical and psychological torture - of course you are down! I am so worn out from the things we go through - I can not even imagine how you must feel! Or how you keep going so strong. You are an amazing lady!

The unknown is absolutely maddening and frightening. We are praying hard that you guys can find some answers!! And that Skyler stays strong. Much love to you guys!

AmberLee Ellett said...

It breaks my heart to read all that Skyler is having to go through. But I continue to be amazed at his strength and determination. I am praying for you and Skyler. I am praying that you will be able to get some answers. And that you and Skyler will be able to go home very soon!
Sending love and prayers.

lea said...

You dont need to apologize for feeling down! You have every right to feel down and frustrated! I am so impressed with your constant ability to focus on the positive and have the stamina to deal with all this! 10 months is a LONG TIME! I pray they will get some answers...your handsome prince needs a break!!

Sonja said...

This is hard enough when things are going well--I can only imagine how hard it is not knowing and to wait for all the results and get so few answers. He is such a darling little guy--it doesn't seem fair at all. I hope your hospital stay is short and that they can find the problem soon and that it will have a solution.

Anonymous said...

Crystal, I am so sorry Skyler is in the hospital. It's unfair he has cancer and it's unfair he's had complications. I hope that his procedures went well today and that his doctors are able to help him get better (and home) quickly. Please know you are in our thoughts and prayers.