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.
Tag: ihatethattumor
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.
chemo side effects make keeping a full tummy hard
Well we had made it 4 wks without any day of side effects but today he came home tired and then before bed threw up. It only lasted about 5 minutes but in throw up time that’s like an hr! He recovered fast and is now eating saltines and drinking water. Pray for a calm tummy and restful sleep.
second chemo and nausea sucks
Yesterday was Judah’s 2nd chemo. He got sick, like before, about 20 minutes in and stayed sick for around 30 minutes. He didn’t throw up though so that’s a plus. He was pretty worn out after.
Today he had his PT/OT evaluations. He got scared at first, thinking it was a “hospital” but soon had a blast playing with his new buddies Julie and Katie. He wasn’t shy at all and they got to really see his strengths and weaknesses. Like Ashley, his Speech Therapist, they agree he needs breath support and torso strengthening but he also needs fine and gross motor skills. So he will have speech 1 day a week, pt and ot will both be 2 days a week. Thankfully they were able to avoid Wednesdays and Thursdays so he will have chemo day and day after to just rest.
Next week will be very busy as he will have his first pt Monday then we head straight to Nashville for his neuro ck where they will also remove his stitches. Then his first ot is Tuesday evening. Wednesday is chemo and Friday is ot/pt again. Pray for strength and endurance for the crazy week, a calm and peaceful spirit as we go back to Vanderbilt (as Judah seems to have anxiety about hospitals now) and patience for both Judah and me as we get more accustomed to our new normal.
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.
Judah’s Home!
We packed up and left Nashville this morning about 10:30 and now we’re home! Judah’s curled up on the couch playing with the iPad and seems to be doing great. He hasn’t experienced any nausea yet from the chemo but I’m sure there will be more of that with more treatments. For now we’re all happy and comfy back in our own home.
Want to say thank you to all the wonderful people who came and cleaned our house, mowed our lawn, stocked our fridge, and the hundred other little things y’all have done to love on us! We appreciate you so much!
And an extra special thanks to Josh, Brandi and the Kellett boys for feeding and sheltering us for a whole month. We couldn’t have survived without you!
Thanks to all the prayer warriors out there. Keep praying for Judah. We’ve got a year left of his chemo treatment and there are sure to be some hard times.
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!
baseline testing
We got to go to our home away from home as a family last night for the first time in almost a month! Judah got to take a real bath for the first time in over a month. We had dinner together, watched a movie together, read stories together and then went to bed! It was surreal and lovely and we thanked our precious Jesus for such a sweet return.
This morning we are back at Vandy for Judah’s baseline testing. Basically, they are checking kidney function, platelets/red/white blood cell counts, and liver functions. He will also have his hearing checked as hearing loss is a possible side effect of his chemo.
He wasn’t thrilled to be back here and when the nurses accessed his port, drew blood and injected the medicine for testing he was even less thrilled! It was pretty awful because the medicine had to be injected into a vein, not the port, but most of his easy veins were blown from previous ivs. It took them a good while but after they got it, it was smooth sailing.
Now we are just waiting for the 2hr mark to go get ckd again. Should be done around 1 today.
Port Surgery, Post Surgery, and Discharged! What a day!
Judah has been taken back to surgery for his port placement. He was pretty upset when they wheeled him off. Prayers for comfort for Judah and steady handed Drs!
Judah is out of surgery and everything went as planned. He now has his port in place for chemo.
Please pray he bounces back from anesthesia quickly and his recovery continues to make steady progress. We are also hoping to get discharged soon and hope the feeding tube comes out.
Also join us in prayer for a definite plan for his OT/PT/Speech. Right now we don’t know where we are going or how those appts will look. We also need a plan for chemo if we get to come back to Knoxville for his therapy. Pray for clear direction.
We are officially discharged from the hospital!!!
We will be coming back tomorrow for baseline testing and then Wednesday is our first Chemo treatment but after that we get to come home to Knoxville!
We have been working hard for a week to figure out where we could do Judah’s pt/ot/speech and after giving up on Knoxville, I woke this morning and felt the urge to call East Tennessee Children’s Rehabilitation Center and just tell them our story in hopes they would change their minds about speech (it was wait listed for 6 months). They listened and then said that our oncologist could call and talk to them and of they felt Judah’s case was immediate enough they would move him to the top of the list.
So at 10am this morning I told our Case Manager, who told our oncologist, who agreed Andrew some calls and then after hrs of back and forth we got the word that they had agreed to take him!
So now we get to come home and do pt/ot/speech and Chemo in Knoxville! We are so grateful that we will be home, surrounded by our community, friends, support system. Thank you for your prayers. Keep them up. We have a long road and it is really just beginning. God is directing our path and we are finding that though this isn’t the rd we would choose, our sweet Jesus will not abandon us and will continue to go before us and behind us.
Port Surgery tomorrow
Judah’s had a good couple of days.
As I sit here typing this, he’s snuggled in his hospital bed playing. That’s a big deal because he used to do that every night when we’d put him to bed but hasn’t since the surgery. We’d put him in bed around 8:30 and he’d lay there reciting the dialog or humming the theme music to his favorite movies or acting out fighting scenes from his Next Avengers cartoon until usually 9:30 or 10 (we’d only have to tell him to be quiet 3 or 4 times before he’d hush). He’s not quite back to his chatty self at the moment but he’s over there swinging and punching his way through some imaginary fight scene.
Judah got to spend yesterday afternoon and most of this morning with Papa Doc and Mumzy and got to spend this afternoon with Mimi and Papaw. A friend from our church who’s been through chemo before came and visited and showed Judah her port so he wouldn’t be scared of tomorrow’s surgery.
Most importantly, Judah has spent the last two days eating! He’s had three full meals a day for two days now and has eaten almost all of them. The docs still insist on giving him tube feedings at night but I feel like he’s getting the calories he needs now during normal eating. There is a chance he’ll get to go home tomorrow after his port surgery so we’re praying for a quick recovery so everyone will feel comfortable sending him home! The first chemo treatment will be on Wednesday so we won’t have time to head all the way back to Knoxville but at least he’ll be out of the hospital.
We also hope to get a few more details ironed out about his physical/occupational/speech therapy tomorrow so prayers for God’s guidance in that area are also appreciated.