Saturday, March 24, 2012

         I finally have the answer to Skyler's mystery rash.  Psoriasis.




  On Thursday I took Sky up to clinic to have our oncologist look at the rash once more.  Something didn't feel right and I felt like this wasn't something that was just going to go away in a week or two.  I knew we were missing something.  Dr. Lemons took a look at his body and was blown away at how prominent it was and how much of his body it covered.  He didn't know what to make of it so he sent us right over to the University of Utah Hospital to have a dermatologist look at it.  The doctor only had to look at it for minute to know that it was psoriasis.  This was definitely not the answer I was looking for.  I actually have psoriasis myself so I know how annoying and awful it is.  I would almost it rather be the chicken pox, because if it was that it would go away within a couple weeks with antibiotics.  Psoriasis doesn't have a cure. It is a chronic autoimmune disease that causes an overgrowth of skin cells.  T cells invade the skin where they prompt your body to grow new skin cells faster than normal.  They also rush other cells to the site causing redness and inflammation.  The patches often itch or are painful to the touch.  I have been dealing with this since Skyler was in the PICU (mine was induced by stress) and it has been annoying, embarrassing, expensive and very depressing to deal with.  The days of swim suits, shorts and tank tops are long gone and I also now have psoriatic arthritis because of it.  I can barely open Skyler's pill bottles now to give him his daily antibiotics and chemo.  Its hard to feel sorry for myself though because what I have to go through is nothing compared to what Skyler has to go through on a daily basis.  But now on top of all that Skyler has to deal with having cancer, he also now has to deal with this.

I know I should be feeling grateful that this rash isn't something that is going to put him in the hospital but right now I'm not, I'm mad.  I haven't felt anger like this since Skyler was first diagnosed.  After the complete shock I felt as my world crumbled around me with the word cancer, I got very angry.  I was mad at the world and mad the lord would do this to my baby right after he just took his daddy away from us.  After Ben died suddenly from a heart tumor I prayed relentlessly that nothing like that would ever happen to my son.  I would pour my heart out every night and pray that he would keep Skyler safe and healthy and not let anything like what happen to Ben happen to him.  So you can only imagine the anger that filled my heart when I found out that my sweet little boy has cancer too.  Ben's tumor took him immediately, he didn't feel any pain.  But Skyler's cancer causes him to suffer everyday. How could a loving father in heaven do this to my son, the one person I asked him to protect?  Eventually my heart softened and I'm now grateful for the new outlook I have on life and am grateful for everyday that I have to spend with my son.  He could have so easily lost his life a year ago but he didn't.  His life was spared and for that I am eternally grateful. 

I still am very grateful for all the blessings that we have received throughout this journey, but right now the anger has returned.  Why does someone so young have to deal with so much?  Why has so much been thrown his way at the tender age of five.  I had tears streaming down my face today as I was putting the cream all over his body and he was screaming in pain.  When you put the cream on areas that are inflamed it feels like your skin is on fire.  It even hurts me and mine isn't all over my body like Skyler's is.  We sat on the floor and I held him until he stopped crying.  He then looked at me with tear streaked eyes and asked me why he has to hurt all the time.  I wish I knew the answer to that.  My heart hurts for him tonight.

15 comments:

Liebert's said...

You are amazing to go through all of this and only be angry twice. I wish I could help Skyler stop hurting but he must be stronger then me to go through this. My heart hurts for him too.

Lacy Allred said...

I'm angry too. I just don't get it. My heart hurts:( thinking of and praying for Sky!

Misty Jo said...

Oh Crystal I am so sorry. That just broke my heart! I pray that one day he doesn't always have to hurt and that he can enjoy being a little kid.

Crystal said...

I know that you don't know me but I came across your blog on a friend's blog and had to comment. I just wanted to tell you that I think you are an amazing mother and so very strong. Your little boy sounds like he is absolutely incredible. I wish you both the very best in your struggles and will pray that Skyler soon knows a childhood that is filled with joy and comfort instead of the pain he is feeling now. May God bless you both.

Unknown said...

Crystal, my heart breaks for you and your little boy. I found your blog last week and stayed up late reading as much as I could, amazed at how openly you've documented your struggle together. I respect but don't share your religious beliefs - I don't know how I would carry the anger I feel at the injustices in the world, the babies who suffer every day, if I thought someone was responsible for it all. Maybe Job can offer you some comfort? I'm sure there is no "why" - how can any of this suffering be justified? I say this with tears in my eyes, and hope in my heart. I'm glad you're in such good hands at IHC. I'll be praying for you, in whatever way I can, and hoping for healing. Your son is so lucky to have you, such a good, strong, brave mama. You're not alone.
With love,
Emily

Holly said...

I am so very sad to hear about this latest development. I pray for healing and freedom from pain for both of you.

Eisha said...

Put the cream on during his REM sleep cycle--he won't feel a thing--I am going to send you an email.

My psychology professor did this when her daughter had psoriasis and she got the cream on and her daughters skin healed all while she was in a very deep sleep! Don't be impatient--has to be in REM sleep--set an alarm clock! Good luck

suzie said...

Oh crystal........I am unbelievably just sooooooo sick and sad and angry that ur perfect, precious, strong, amazing beautiful little boy has to go through soooooo much suffering on a daily, hourly, monthly basis!!!! I too, have psoriasis....I'm 29 and have had it since 11years old (mine was stressed induced too...mom died at 14 and eleven months later my 18 yr old brow died) but......my reason for telling u this Bc if u wted to try a natural treatment....online there is a product called **Serena skin.com. and its the anti-psoriasis cream, oral drops, and spray. Also rub extra virgin olive oil and castor oil on him. If u want to.
I'm so sorry to Doyle......just is NOT NOT NOT fair no

suzie said...

Nor is it right!!!! I am ALWAYS praying for him and just called into our mesa temple prayer roll and put his name on once again.

Oh I pray pray pray he can just enjoy being a free of pain 5yr old boy

*suzie

Anonymous said...

oH sweet sweet angel, my heart aches for your sweet little boy. Crystal it is NOT fair, the trials that you and your baby have gone thru and go thru each day is not fair. I wish there was somthing that I could do to help. Please Jesus please help skyler and crystal.
Always praying for you both!
Zachs mom

Piano Mom said...

Crystal I have wondered all of the same things you mentioned. From anger to thankfulness. It isn't fair. I don't know why some have to suffer so much. You and Skyler have definately been given more than your share.

It is during these times that we have to remember that the Savior felt these pains and more. He understand us. He understands the pains. When Erin's sore wouldn't heal and I thought it would ruin her body forever (it was on her bottom) I prayed very hard and felt the most amazing answer. Heavenly Father didn't tell me that he'd fix her and he didn't tell me that she'd get better. But, he told me that He felt so badly that she had to go through this pain, He loved her so much and He cried because of her pain. It was absolutly amazing to feel the love that He has for Erin.

I was amazed that I had forgotten that He is her father too. Her real father and he loves her and cares for her more than I could comprehend. I was humbled that I had forgotten that all things point to Him, even these hard times that don't seem fair. Even though I didn't get the answer I wanted it was the right answer and all my anger and fears left, even though she hadn't been healed.

We love you Crystal!!!! Hang in there!

Macy said...

Hi Crystal! I have commented on here before, I have been following your blog from the very start. YOU and Skyler are both heroes and you are in every single prayer of mine. I was listening to my ipod this morning and this song came on and I immediately thought of you and then later I read this post. Keep being strong, you and Skyler will make it through and the blessing awaiting you will be marvelous and beyond our comprehension I am sure! Skyler chose you as a mom because he knew you would be the perfect one to help him through his struggles here on earth. And remember, Heavenly Father is there ready to hold you and give you the comfort and love you and Skyler need!

http://www.youtube.com/watch?v=zdiLmDZVa4o

-Macy

Josie said...

Prayers your way. You are an amazing person with an amazing son. I know you will get through this, you've gotten through so much already. I don't pretend to know what it is like, but just know I am praying for you both.

Ashleigh said...

I am so sorry for you and Skyler! That is horrible. I really don't understand why it has to be this way for him and you. You have both been through so much. You are both so strong. Both of my little boys got a bad bout of stomach flu this last week and after watching them throw up over and over and suffering, I thought to myself, "Why do they have to keep suffering? When will it be over?" But then I immediately thought of you. How it must hurt to watch Skyler suffer so much. The stomach flu seemed so trivial at that moment. I think of you often and pray for you both constantly. I hope he starts feeling better soon. Hang in there Crystal!

Emily said...

I am so sorry. Sometimes things make no sense. You don't know me but I have SO much love for you and Skyler. Just thinking of your sweet Skyler makes me happy and so humbled at what a rockstar he is.