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!

Sunday, January 15, 2012

Even Better!

So in the last post about Case's results, I said that the tumor was about half the size (by linear measurement). Well, Xavier and I were thinking about how it's really more than that because the volume of the outer core of tumor is greater than what is left.

Xavier sat down to do the math tonight and showed me that the tumor is currently 22.85% of the original size!! Woo hoo!! Then I get into my email tonight and see a comment from someone in Berlin, Germany (a kind stranger - thank you Gabi) who stated the exact same thing...Case's tumor is 23% of the original size.

The last four treatments have reduced the tumor by 77%!! Take that, you nasty cancer!!

I also forgot to mention the little tumor deep in his chest wall (the part that pushed his diagnosis from Stage 3 to Stage 4). While I don't have measurements, the doctor said that it was significantly reduced in size. They still are not sure if it's an actual tumor, or just "sick" lymph nodes, but there are actually three of them, with only one being of more concern. Overall, the doctors don't seem too concerned about those.

Let's just celebrate 23%!! And tomorrow he goes in for Round 5, more of the superhero drugs that we love and hate!

Wednesday, January 11, 2012

Results Are In!

The CT Scan was finally read and the doctor called me with results this afternoon. The tumor is half the size! Hooray! The chemo is working and he is right on track. The original tumor was 7 cm x 10 cm x 7 cm...that's huge! I never knew the dimensions, but now I'm wondering how our baby even survived! Now the tumor is 4 cm x 7 cm x 4 cm. We are very happy that everything is working, and our doctors are very pleased too.

So we will move forward with another 4 rounds of chemo, as planned. Round 5 starts on Monday. Then after those four we will repeat the same scans and make a plan from there, whether it be surgery or more chemo.

Thanks everyone for your continued prayers!!

Tuesday, January 10, 2012


Well, the only results we are going to get tonight are from the office nurse. The CT Scan has not been read by the radiologist yet, so we have the preliminaries from the MRI which are "things look smaller and better." So that's good, but we are still waiting on the edge of our seats. Won't get much sleep tonight! :)


We just got home from the hospital where Case had his CT Scan and MRI. We are still waiting for the test results...which should come, hopefully, this afternoon, through a phone call from our doctor. We will post the results here as soon as we find out. We may have to wait until tomorrow, but let's all pray for today!

Thanks everyone for your thoughts and prayers.

Sunday, January 1, 2012

Happy New Year!

Happy 2012! We are so ready to be done with 2011. 2011 brought us more health issues than we ever wanted to dream of (plus months of selling, packing, moving, and home buying stress), so we are excited for 2012.

We enjoyed our first day in 2012 with some family time. We had such a great evening just playing on the ground, tickling, wrestling, winding our evening up with a rousing round of London Bridges. I know this doesn't sound that exciting, but there was a time when we wondered if we'd ever get to do things like this as a family with Case. So to soak in the smiles, laughter, and pure family love was extremely joyous!

To share in the celebration, I have posted what we call the scrunchy face. Whenever we pull out the camera and use the flash, Case squints and scrunches up his face because of the bright red-eye light. The face cracks us up and we usually get five of these faces before we get a "normal" one. So enjoy. I know we sure do!