No news…is not good for me and chemo day

Last night was thankfully uneventful. He slept great and his breathing was regular. We go to chemo this morning and we will see what Dr Spiller says. This may be related to his mental coordination that his neuro surgeon told us about.
If I didn’t explain it earlier, it’s where his brain isn’t capable of managing/controlling 2 things at once (ie: managing anger and breathing normally). So when he gets overly angry, his brain can’t both control his mood/physical lashing out and tell him to keep breathing, so he passes out. This is not supposed to be permanent. The surgeon said that any of the symptoms he is experiencing can possibly be blamed on his surgery/tumor and we won’t know what until he is at least 6 months post surgery.
We obviously would rather this to be a symptom of surgery and are praying that the passing out was the mental coordination and not the tumor growing or shunt malfunction.
Thank you for the kind words and prayers.

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Judah stops breathing and I almost have a heart attack

Judah just stopped breathing and passed out. Was out for about 30secs before he came too. Have calls into neuro surgeon and oncology. Please pray!

Well we talked to the Hem/Onc nurse and she said she would let our oncologist and neuro surgeon know and that they would probably call us to talk about it. However since his vitals were normal and his ox sats were good, they didn’t think it was emergent.
We haven’t heard from either dr yet so I’m guessing we won’t hear anything tonight. Tomorrow Judah has chemo at 9:30 so I will talk with his oncologist here and she what she thinks. Last week when his balance was off, she said if he was still off she would send us for a ct scan so we may do that tomorrow to make sure the shunt is working properly.
I have ckd his pulse ox all day and since recovering from passing out it has stayed between 92-96 so that is good. We will ck it night too.
Please be in prayer for both his breathing and overall brain safety.

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first chemo side effects…already

This morning at breakfast Judah was holding his jaws while he chewed. We asked him what was wrong and he said his mouth hurt. We asked him where it hurt and held the sides of his face. His jaws.
The oncologist had told us that one of the side effects of his chemo is neuropathy in jaws, fingers/hands, and toes/feet.
Please pray specifically for this to go away and stay away. Jaw pain/neuropathy on top of nausea will make him not want to eat no matter what we give him. If his calories drop we will have to go back to a feeding tube.

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Judah’s first chemo

Judah’s first chemo is this morning. Please pray that is all goes smoothly, that he has little side effects. Pray that he isn’t scared.
He will have blood draws at 7:45 then meeting with the dr at 8:00 then chemo from 9-11.
Thanks for the prayer support! Love you all.

Judah got a little sick in the middle of the treatment but was ok by the end. They gave him zofran for nausea and we will continue that every 8hrs for the next 48 hrs. Thankfully, his immune system will not be compromised until next wks treatment but we are having to learn a lot about germs, infection, and how to protect our little family. If one of us gets sick after next week, we will have to go stay somewhere else. Gotta keep the germs away as much as possible. Investing in hand sanitizer and Clorox wipes, haha!

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Judah goes for a ride

Tonight our amazing nurse took us for a ride to a room made of windows. I don’t think Judah has seen the sky or trees in 2 wks and I was thrilled for him. I started talking about what we could see and then I asked him to pick something and try to say it.
I may have pushed him too hard after hearing him say Momma because he got really frustrated and started crying. And then I started crying. I hate this so much and this evening, I realized, this is probably harder on him than us. The little boy who could pronounce anything after hearing it once can’t say “tree”. And he shapes the words but just can’t figure it out. I asked God through mine and my sons tears, “What are you waiting for?” He has shown up consistently and carried us. And for some reason, that doesn’t feel like enough. We want a miracle!
Mumzy is staying with Judah tonight but before I left I prayed with him asking for our Jehovah Rapha, The Lord who heals, to supernaturally reach down and touch Judah’s vocal chords and mouth and tongue and swallowing system and heal them. That we know that all it takes is HIS touch, and Judah will be healed. And we know that our Jehovah Jireh, The Lord who provides, will provide us with the endurance, strength and patience we will need until we see God’s glory met through Judah’s supernatural healing.

Please join us in praying for supernatural healing of Judah’s:
-vocal chords
-swallowing mechanism
-tongue and mouth function
-frustration in not being able to do what he knows he should be able to

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