Thursday, January 26, 2012

Keep Calm & Carry On

We haven't had too much going on this week. Case is finally feeling better, after the yucky week post chemotherapy. Round 5 was a bit rough. We were in the hospital for 3 days. The first day Case, somehow, pulled the needle out of his port. It was still under the tape they put over his chest, but it was jabbing into his skin. It was so sad. He had to go through the nurses sanitizing the cuts from the needle and putting a new needle back into the port without any numbing. Think straight rubbing alcohol in a fresh wound...ouch. He is such a trooper though.

We, as parents, had a little bit of a rough time as well. We got the written report from his scans that the radiologist had written up. It was comparing everything to what was originally seen at the time of his diagnosis. I read things that I didn't know before. I had no idea how bad it originally was. I mentioned before how large the big tumor was, 7 x 10 x 7 cm. That's huge for my little baby's body (considering his shoulder width was 7 centimeters). The tumor was starting to press on his heart and was partially blocking his inferior vena cava - the artery that takes blood to the lower half of his body.

It also referenced "multiple masses." That really through us for a loop and upset us. Apparently they were always there, but aren't that much of a worry. The large tumor started invading the neighboring lymph nodes, so tumor cells got into the lymph system...which is terrifying. So there are "multiple" lymph nodes that are enlarged and have tumor cells in them. They are all significantly smaller now. At this point the lymph nodes could be full of dead, calcified tumor cells. If that's the case, they will remain like that for the rest of his life, but once the tumor cells die, they will never come back. We won't know what's in them until we repeat the MIBG scan (or soft tissue scan) at the end of the 8th round, which will highlight any tumor cell in his body.

The large tumor has shrunk an incredible amount...hooray! It is spotted with "chunky calcifications," or spots of already dead tumor, which is great. The blockages of the liver and any other organs have now resolved themselves. So at this point it's more the idea of the lymph system that has us concerned more, since the main tumor has responded so well.

So we had a good talk with one of the doctors, who put some of our worries to rest. It was just so horrible finding out how bad it really was, and realizing I didn't know all of that. I'm not sure if we weren't told these things, or if it was just too overwhelming and went over my head. But the good news is that the chemotherapy is working and killing tumor cells. So after a few days of ingesting all of this information, we are charging forward. Our new motto is "KEEP CALM AND CARRY ON!"

Here are some cute pictures:

We have had some lovely weather, so we went on a "hike" - or the closest thing you can get to it here in Texas. This was on New Years Eve. Case enjoyed being out and we enjoyed his cute face in his froggy hat!

Case is really progressing in his development. He has been delayed in several areas, mainly gross motor skills. We will have therapists coming to the house to work on crawling, walking, and communication starting next week. He just barely started crawling this week. All of his positions were compensating for the fact that he had a big tumor in his belly and he was trying to avoid pain...understandably. He LOVES to walk now, holding onto our hands. So we spend a good portion of our day walking and walking and walking around the house. His favorite activity is going up and down the stairs. Our backs are greatly anticipating the day when he walks on his own!

Graydon, the always "supportive" sibling.

Case tried marmite for the first time yesterday and actually really liked it. Marmite is a yeast spread from New Zealand (kind of like vegemite). It can be really strange to anyone not used to it, but we get our kids used to it from a young age and they love it. After all, they are half kiwi. Dad was proud!


  1. Great pictures ... even better post. Always grateful for the update. What an amazing family you are.

    AJ and Cindy

  2. Keep up the good fight! Your whole family is such an inspiration. Our prayers continue.
    Camille Nixon

  3. I love your new motto! He is so adorable!! You are constantly in our thoughts and prayers!

  4. That is so great that Case is walking!

  5. Prayers still comin! Love you guys! Mark and Elaine

  6. Cute Case and cute Graydon. I'm glad the Dr. chat made you feel a little better. I love your new motto. I might have to adopt it. I can take Case up and down the stairs all day whenever you're up for it.