Friday, March 1, 2013

Long Needed Update

Since the temporary death of my computer it's been difficult to get the time to put this down. Not too mention it's hard to type from a cell phone.
And lets be honest
I avoid it.

It's like writing here makes me feel like its more real. My baby, my pretty baby boy, has cancer. And it's not easy. I still sit here and can't even comprehend whAt position I'm in. It's so difficult.

Since I posted last, I have broken down. Everyone told me it was inevitable and bound to happen. And it did. I hated it. Since it happened it couldn't even stop. I still can't stop being a little emotional. I do my best, but sometimes I still sit here and wonder why my baby. Why me? I don't get it. I really wish I could be in anyone else's shoes. But then I don't wish this on anyone. No one deserves to go through this, and this has brought a whole new line of sympathy in me for other parents. I'm an advocate for parents to love their healthy babies while you have them because when they aren't healthy it kill you.

Now unfortunately this post won't have pictures, but I will try to put them in later.

He had his chemo two weeks ago, with a catheter through his chest straight to his heart. It's scary as the nurses made abundantly clear that if anything happened during cap changes or dressing changes he could totally bleed out. Do you know how scary that is? It's horrifying.
But while we were in the hospital they had given us these really creepy dolls. One had a catheter in its chest like him. The other was used to practice our shots on him. Yes, for 10-14 days after his chemo we have to give him shots to help his immune system stay up. Which wasn't fun. His poor thighs started callusing because he needed it longer than 10 days since his numbers weren't where they were supposed to be.

Can I just say I have become far too comfortable with medical terms? Sure I want to be a nurse but I want to learn these things in school, not because my son needs them.

After his chemo he had a huge issue with throwing up which was causing him to lose weight. They were giving him two IV medications through his IV in the hospital around the clock. When we tried to give them via mouth and that just made the puking worse before they finally had the cancer center where we do his labs give it to him through his line. Oh thank god! As I said previously, life saver!

He hasn't lost his hair, he's becoming happier, he's finally got a tooth.

I still have a hard time accepting all of this.
I want my baby healthy.


  1. You and your family are in our thoughts and prayers.

  2. I know you don't know me, but I think about you and your family every single day. I tell people about your journey in hopes they become more aware of this awful disease. Be strong. Much love.

  3. Hi. My oldest son has retinoblastoma. He was diagnosef at 10 months old. I would love to be able to email with you. My email is . Your family is in our prays. From one Rb family to another.

    1. I'd love to talk to you as well, I'll do my best to get in touch!

  4. My thoughts and prayers r with u. I can't imagine what u must be going through and thinking why me God. Im sorry but I can't answer the whys. But I will be praying for a miracle and that God gives u and your family the strength, again my heart goes out to u!

  5. Just wanted to say I was thinking of you guys today. Good thoughts headed your way.