Tuesday, February 28, 2012

Effects of Round 6

Now that we are safely past the two weeks that followed Round 6, I feel like I can finally make a post. It was the worst one yet. "Worst" not as in throwing up everywhere, but "worst" as in we had the GRUMPIEST, ANGRIEST baby alive.

It made life so difficult because he was just so angry. It would have been easier if he just got lethargic and sad and wanted to cuddle and watch TV all day. But he gets so angry! I think it's because he feels so awful and can't understand why. He still wants to do things like walk around (holding on to our hands of course), play outside, etc, but he feels rotten when he starts to do it. So every minute he starts a new activity, which is followed by back-arching, yelling, collapsing on the floor, and screaming because he feels horrible.

So...it is REALLY hard because there is nothing we can do to comfort him. Yesterday I then realized how incredibly selfish we are as parents because we are thinking about how hard it is for us to deal with him. Because he can't talk, it's so easy for us to forget how terrible he feels and just to focus on how grumpy he is. So then we feel really bad. It's a vicious cycle. Can't wait for this to be over.

Another thing that made Round 6 especially hard was the fact that he was neutropenic for two weeks. Usually his white blood cells are non-existent for about 5 days, then his counts recover and we can carefully venture outside or at least go visit Grandma...just something to do to get out of the house. But his white blood cells were almost at zero for TWO weeks.

We knew it would be like this as we neared the end because his poor little body is being rocked by chemo. The more he gets hit, the harder he falls. So I'm scared for the next few weeks!

So having said that, here we are at Round 7. We are sitting in the hospital getting an infusion of Carboplatin (a yucky drug) right now. This is our last 3-day round. In three weeks we will have our final round of chemo, which will be a 1-day infusion. I am finally feeling like there is a light at the end of the tunnel.

The first week of April we will repeat a CT Scan, MRI, and the MIBG Scan (which is a nuclear scan of the soft-tissue and will light up all cancer cells in his body). About two weeks later he will go in for surgery to remove whatever is left. One week after that he will have one more CT Scan just to make sure everything looks good. Then after that we go to monthly urine analysis and scans. So we are anticipating a mid-April surgery date. Hopefully after that we can be on our way to recovery and a "normal" life!


  1. Oh, sweet baby Case! It has got to be so hard to not understand what is going on in his little body.
    Don't say you are selfish either, you are a great mommy!!! It has got to be so hard, day in and day out, for months, doing this hard work and caring for your sick baby, without being able to get a break.
    Love you all! I have always admired your strength and testimony. Stay strong and look up!
    Love, Jess
    P.s. I accidentally deleted your address off my phone. Could you text it to me again? Thanks!

  2. ......and yet you are still amazing and strong through this all. We will continue to pray for you guys to have the strength to keep plowing through. We love and admire you all!

  3. Hold On! Soon this will all be a distant memory and your sweet little Case likely won't remember it at all. Loads of love, good thoughts and prayers coming to you from Provo.

  4. Oh Emily, I'm so sorry that it has been so awful! I can't even imagine what it must be like for you and for poor little Case. Thank heavens for the light at the end of the tunnel. You guys are still in all our prayers!

  5. I'm glad there's finally a light at the end of the tunnel. We pray for you guys all the time that surgery will go well.