The new chemo plan is in full swing. We're in the middle of week 4 and are learning more and more what "real" chemo looks like. When doctors and nurses told us that the chemo Isaac was initially getting was light we took their word for it but didn't really realize what that meant. In our world it sucked. It's interesting how our perspective can change so quickly! Haha! Isaac has had some crummy weeks. We shaved his head after Melissa noticed the pillow was absolutely covered one morning. His weight loss continues to be an issue. We are all still so tired.
And yet life continues to march on. God pushes through our pain and weeps with us and lifts us up. Miracles. Joy. Community. Life.
It was last Wednesday or so that Isaac came out of his funk. Since then he hasn't slowed down. He's running around outside and being his usual goofy self. I came home from work to find Leah and Isaac running a restaurant in the playhouse. The menu is usually pretty limited as mean-old-mom-and-dad don't want huge messes to clean up and food moves in and out of the play rotation. So coffee and a hamburger were the choice for dinner. Soon afterwards I was scolded for not sitting at a table and eating standing up. SORRRRRYYYYYY you little twerps. At bedtime Isaac had Leah bamboozled. I came into the bedroom to Leah stating "Isaac doesn't know who Daniel Tiger is," I looked at him and he was already cracking a grin. "Yes he does! He's just tricking you!" Later, Isaac said he saw dirt on the carpet and that only he could see it because of his medicine. At one point a comment was made that Peter Parker got his powers because of the spider and that maybe Isaac would get powers from his tube medicine (translated into adult=chemo). I haven't heard him make a joke like this, but I'm guessing that it's stemming from that.
We've been pretty worried about his weight and getting an NG tube and believe it or not he was up 0.3 kg on Monday from the previous week. Melissa and I did a little happy dance in the hallway. He's been eating great all week too! Did you know they have medications that are appetite stimulants? For all we don't know about the body and cancer I feel like there's some similarities to those app commercials. "They've got a medication for that!"
There is some normal in our lives and we praise God for those moments. In the same breath we're sitting here wrapping up day 3 of 6 at Randall's. Even writing that is a punch in the gut. The Ronald McDonald House has been wonderful. Melissa and Isaac have had a parade of family and a few friends (if any of you want to visit them in the hospital during future stays you're welcome to text Melissa) come through to lift their spirits. Movies have been watched, snacks have been had, and new toys have been opened, and yet we're pumping our kid full of drugs. Something surprising to me is that the nurses fully garb up when administering chemo. I don't think I've ever asked why but I assume it's because it's not good to get on their body if they spill it. How backwards is that!?! That's partially why I shared the fourth picture. You can see the nurse preparing the chemo drugs that--God forbid--get on her skin, but let's just pump it into Isaac's body! Please don't take this as me ripping on the nurses. It's just unbelievable to me and borderline comical.
Next week will be tough. His white blood cell count will be in the pits again. I'm expecting a blood transfusion as his hemoglobin was at an 8.5 (11.5 is the bottom of normal and 7.0 is the number when you can potentially expect a transfusion) to start this week. He'll be lethargic and grumpy. And it's the first week of school. Leah will be excited and overwhelmed and will be carrying every germ this side of the Mississippi. (We're pumped to get her into Pratum. I visited the school today and just know that Leah is going to love it. I may be a little biased.)
We are expecting emergency visits to Randall's. We're expecting an NG tube. We're expecting some scary moments. And we have no idea what any of that will look like.
We'd love prayer for protection from germs and bacteria next week, fun friends for Leah at Pratum, and time to slow down and just breathe.
Love you all. Thanks for being by our side.
The verse on the board write now is Isaiah 43:1.
But now, this is what the Lord says--
he who created you, Jacob,
he who formed you, Israel:
"Do not fear, for I have redeemed you;
I have summoned you by name; you are mine."
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