After Judah’s last chemo, he never really bounced back. He hasn’t been ill the whole time but has been tired and had very little appetite. Then Sunday he became incredibly lethargic. He was white as a sheet with huge blue bags under his eyes. He ate 2 pieces of bacon all day long and drank about the same. He did not move from the couch/floor.
Matthew and I had been out of town and returned today to find him looking the way I described above. It was shocking. So shocking. Today we have spent the day getting fluids in him. He has eaten a bit more but everything runs straight through him. And he feels wretched.
This is so much worse than he was the first time we did chemo. And we have a long, long way to go. We want more than anything for him to be better and know that the chemo is killing the cancer. But it feels like it’s killing him too. And that is almost too much for a momma and daddy (and grandparents, aunts/uncles, cousins, friends) to stomach. We are watching him with tears in our eyes. Doing the best and knowing the best is not even close to helping.
We will be taking him to see his Dr tomorrow morning and fully anticipate him being admitted to ETCH. Please pray for him and us. Pray that tonight is uneventful and that we get a solid plan for helping Judah with his diarrhea and nausea so he can start to get a little more energy. Pray that we get a feeding tube put in soon and that it helps. Pray for his spirits. He is so sad and tired. And so are we.
Thank you friends.
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I’ll start with the most important news first: Judah’s tumor hasn’t grown since we started chemo!
The radiologist hasn’t actually read it yet but we looked at with the dr and you can see it hasn’t grown! We also saw, and the dr confirmed, that there is less contrast (lighting up) so that means the chemo is killing those growing cancer cells. We are so elated! We won’t know if it’s shrunk until we see the radiologist’s report but we feel confident that this MRI is good news!
He has already had his labs and anti nausea meds. Everything looked pretty good. The dr said it looked, by his labs, that he is fighting “a little something” by the slight elevations but nothing to be worried about.
We did have to have a talk about his weight. He had lost weight…again. Dr pulled up Judah’s growth chart, which I always dread because he hasn’t been on a growth chart since he was 4, and showed us that Judah is in the 0.02% for his age. That means if you picked 1,000 kids randomly, he would be the smallest and thinnest of all those kids. And the kicker is, that he has now lost so much that he is technically considered “failing to thrive”. This wasn’t shocking to us because we have been fighting his weight loss and lack of appetite for 5 yrs. But the failure to thrive was heart wrenching. The dr was quick to tell us that we have done nothing wrong. That gaining weight is hard for a lot of kids with cancer. But also said that we can’t do nothing now. So in the next couple of weeks Judah will probably be getting a feeding tube (NG Tube). For those of you who are medical people, he can’t get a G Tube because the chemo makes it too hard for his body to heal. They can’t do surgery unless he goes off chemo for 4-6 wks. And we aren’t doing that right now. Judah is very sad. He doesn’t want to be “Judah with cancer”. He wants to be “just Judah”. And the NG Tube will be on his face. And people will see it. You can hide a G Tube under your shirt. It’s a bummer. But it’s also necessary at this point. Judah is an amazing kid. He sweet and gets “it” like most kids can’t. He understands he has to have the NG Tube. And he will get to a better place because that is just who God made him to be. Brave and introspective and sweet and trusting. Join us in praying for his heart. And that his little friends can see past the weird tube and treat him like “just Judah”!
He finished his chemo in great time and we went down the street to McDougal’s Chicken, before we headed back to Bam’s for the night. We planned ahead of time to stay over night in case judah was sick and boy am I glad we did. About an hour after he finished chemo he started getting sick. We had to rush to the bathroom several times before we even got back to Bam’s. Unfortunately, Judah was sick the rest of the day and into the night. He hasn’t been actively sick today but he also hasn’t eaten much.
Thank you for celebrating with us and praying with us. We are grateful for our community!
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I am a heavy sleeper. I love sleep and people who know me will tell you that I really do need 9-10 hrs of sleep a night to be my joyful self. So I go to bed early. Like at 9pm. I know! But I have learned that if I want to get all the sleeps, I have to forgo the TV and all that stuff and get into bed. I have even gone back to reading ‘dead tree’ books, as my husband affectionately calls them, to minimize the chances of falling into the endlessness of internet only to find that I’ve scrolled my way to midnight and kick myself because what had I actually read/seen that as worth losing precious shut eye?
All that to say, once I’m asleep, there isn’t much that wakes me. One of my children crying is one thing I ALWAYS hear no matter how asleep I am (fellow mommas nodding, right?) Another is the Holy Spirit. And that’s about it. Last night I was out cold, and had been for a few hrs, when I woke up for no apparent reason. When I say woke up, I mean wide awake! I looked at the time, after midnight, and then looked around the room. Nothing. Looked out into the hall and saw the bathroom light was on. And I said a quick thank you prayer because I knew then that one of my kids was sick. It wasn’t the fact that the light was on, cause my kids get up to pee in the middle of the night too. It was that I had been asleep and woke up for no apparent reason to find the bathroom light on. I knew this was a gentle nudging from Jesus.
I walked into the bathroom and found Judah a mess. He looked awful and told me he felt equally so. I asked him what was wrong and he said “my belly really hurt like I needed to poop but I was too late. And I feel like I’m gonna throw up”. I told him is was totally fine and I would clean it all up. And I looked in his face and saw how embarrassed he was. So I got down next to him and said, “Hey Bug. I’m sorry this happened. Don’t feel bad about it ok? It’s so easy to fix this mess and it is 100% not your fault. This is the chemo rearing it’s ugly head.”
I prayed over him and for him, got him cleaned up and back in bed, and then set to cleaning up the hall and bathroom. While I cleaned I felt a crushing sadness. A feeling of helplessness. Weakness. How do we get Judah through this? What will it even look like to get him through this? And then there was the black hole…the what if’s taking over. I wish I could tell you I prayed or got my bible and read or even sang a worship song to myself. But I did none of those things. I scrubbed the floors and bathroom and cleaned myself up and crawled back in bed. I chose to ignore my feelings in hopes that they would go away if I just went to sleep. I slept horribly. I woke the next morning ‘tight’ inside. I knew I needed Jesus but I couldn’t bring myself to talk to Him. So Jesus crossed lines to get to me.
My phone pinged. A simple text message popped up on my phone. “I’m praying for you right now.” That’s all it said. But it’s all it needed to say. Cause in that moment I felt God’s love for me. And that made it possible for the walls to come down and me to see Jesus.
Sometimes the Holy Spirit wakes us up in the middle of the night. Sometimes He urges us to send a note, a text, to make a call. Sometimes He brings a friend to mind. My advice is to heed that prompting. Jesus may be using you to pull someone out of the the back hole of despair.
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