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!
Just hanging out!
He spent a lot of time looking at photos and videos on our camera, a new favorite activity. It was so sweet to see a huge smile break out on his face every time he saw his big brother! They truly make each other happy every day! Such a blessing!
This is his "fort." I drape his crib in sheets while he sleeps so that he won't just lay there and stare at me. It's the only way to go.
Here he is getting his port de-accessed. He is usually really calm and chill when doctors and nurses are attending to him. He just lays there and watches him. Have a mentioned already that he is a champ?
We spent a lot of time in the oncology playroom with brother and with other cute little patients. It's so nice for us moms to get out of our rooms and to talk to other adults. There's definitely some awkwardness in maneuvering the IV Poles and trailing tubes as the kids try to play together!
Graydon really missed me this time, as I never leave the hospital when there. I'm glad we are nearing the end so that hopefully we don't permanently scar this cute little boy!
Since we've been home Case has mostly been in good spirits! No throw-ups, no long periods of grumpiness and anger! So we are thrilled! We even had time to go on a family hike.
Graydon really is an integral part of Case's treatments - more in the healing portion. They love each other so much and never fight. Graydon is so soft and caring with Case, and gets so excited when he crawls or does something new! Case always laughs the hardest with Graydon. I love brotherhood! I am so glad that Case has such a loving, amazing older brother!
We are in Day 2 of our 3-Day Round 7 of chemo. Case must have known that Mommy needed a break because this has been our best hospital stay! He has been so happy, so content, and will actually play on his own for a bit! He is still flirting with all of the nurses here, staying true to nature.
Things have been changing and evolving each day, so here is a new, updated info page for our growing Race For Case!
