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.
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.
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 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!
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.
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.
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.
We got up on Wednesday, July 3rd, to take Judah to his MRI. Our prayer was that the test would be clear and concise with definitive results giving us and the doctors direction to diagnosis and treat Judah. I was tense. Not because I thought they would find something but because anesthesia makes me nervous. So when the doctor came in 30 minutes into Judah’s scan and sat down, I knew we were about to be rocked to our core. He said, “There’s a tumor in his brain and it’s putting pressure on his brain and brain stem. We are going to move him to the PICU.” I fell apart.
In my heart, I screamed, PLEASE DON’T TAKE HIM FROM US! STOP!
Remember: My God is good AND my son has a terrible tumor in his head. These things are NOT mutually exclusive. My God is good and he will supply all my needs according to His great riches.
Let the beloved of the Lord rest secure in Him for he shields them all day long and the one the Lord loves rests between his shoulders. Deuteronomy 33:12
The following are excerpts of the updates I’ve sent out to our amazing friends, family, and church:
7/4 It’s been a LONG day. We have a ways to go but we finally have some news. The neuro surgeon here at Children’s was just here and went over Judah’s MRI (from this morning) with us. He explained that the tumor is in the lower back of his brain, in a tear drop type shape, going down into the brain stem and possibly the spine. They couldn’t tell how far it went from this MRI they did today and said they will do another of the spine Friday morning to get a better look.He said the part of the tumor that is in the brain is pretty straight forward but the part going down into the brain stem and spine are more complex. He wouldn’t really say more than that. What he did say was that he thought the tumor is causing the apnea, coordination, and eye shakiness…So that’s something.We are in the PICU for the night and will more than likely move to “the floor” tomorrow if all goes well. They have him on iv steroids to reduce the pressure in his brain and that will hopefully reduce the symptoms. They will do the MRI of the spine Friday and said that if he looks good we can go home Saturday. Surgery will more than likely be early next week.Thank you all for your prayers, emails, and texts! We have felt God’s covering and are overwhelmed by the support y`all have shown us. Emotions are still raw and we are obviously nervous but trusting. We KNOW that God has this. That He is bigger than this tumor and that He has plans for Judah. We will trust in the the Lord and not be afraid! Is.12:2
7/5 After another long day of testing and scans we are finally laying down to rest. Judah’s swallow study came back normal so he is finally getting to eat and drink on his own! He ate enough for both of us at lunch and between complaining that his tummy hurt (because he had eaten too much)he begged for gummy bears. He’s been a trooper and we are so proud of him.Now the tougher part:The 2nd MRI showed that the tumor is also present on the C1 and C2 of his spine. This is much more complicated than we initially thought and are struggling with the decision of where/who should be removing this thing from our little boys head. We have had the blessing of my dad (general surgeon), my brother-in-law (OBGYN at Vandy), and my brother (pastor in Memphis) calling in favors with colleagues, friends, and friends of friends to get us second opinions at both Vandy and Le Bonheur. Both doors are open to us. This is where you all come in. PRAY FOR DIRECTION! We don’t want to do anything without God having a say first. We believe that God is living and speaking to his people so we ask that tonight and tomorrow morning you talk to God on Judah’s and our behalf. Where does God want Judah to be? And share it with us. We will be praying and seeking and reading His Word with you.To echo Tae, thank you for being a praying people!
Here is where I want to add in God’s favor for us. The details of the mountain moving that my family has accomplished can only be attributed to God’s amazing hand. My dad and brother-in-law drove the MRIs to Vanderbilt Friday afternoon to meet with a pediatric radiologist friend of Josh’s. He called his best friend, who happens to the head of pediatric neuro surgery at Vanderbilt, who called 2 other pediatric neuro surgeons and they all looked at the scans together. FAVOR. The surgeon said, “My goal is to give his parents back their son the same way he was before surgery. I will not do anything to detrimentally effect who Judah is. We will find another treatment plan if that is necessary.” I do not need to tell you what a relief that was to hear. So Matthew and I spent Friday night and the better part of Saturday praying, talking, reading His Word, praying more, reading your responses and praying into them, talking some more and during this time several things happened. First, Matthew felt an overwhelming peace that when choosing between Vanderbilt and Le Bonheur, there was no WRONG choice. That God’s plan was in motion and that HE would equip the surgeon to fulfill HIS plan. The pressure was off. Second, The events that occurred in the above paragraph. Most doctors don’t put themselves out for anyone, let alone total strangers. This was 4+ drs/surgeons, who were not working, on a Friday night, taking time away from their families, lives, holiday weekend plans, to spend 2 hrs with my Dad and brother-in-law looking over my son’s brain tumor and discussing it with heart. They wanted to give us back our son. This was the among the very few times over the last yr where someone who had the power to help him, made the effort, nay, wanted to help him. As a mom, it was almost enough to make me load Judah in my car and drive him to Nashville myself!
Another email excerpt:
With the news that the tumor is in the brain on the brain stem and in the C1 & C2 we have decided to go to Vanderbilt.
Thank you to all who prayed for direction and then shared it with us!…We feel an amazing peace about our decision to transfer to Vandy.
The transfer will happen sometime tomorrow and the surgery is looking to be Wednesday or Thursday. When things are more certain, I will let you all know.The big prayers right now are:1) That the tumor will NOT grow any (and even shrink) until the surgery so no emergency actions have to be taken.2) That the transfer to Vanderbilt stays on schedule (which we have heard is near impossible), goes smoothly, that the “red tape” is minimal, that insurance pays for the transfer, and we get checked into Vanderbilt PICU before dinner. That Matthew and Judah stay calm on the ride from Children’s to Vandy.
Thank you for covering us in prayer. We feel it.
~The Thacker Family
The Holy Spirit has saturated us with his comfort and peace and though no one would ever want to be where we are, I am so grateful that the God of the universe is ALSO the the God who created my son precisely, gave him his precious voice and imagination, AND loves us so much that He gave up His son for mine. He loves Judah more than we do. He has plans we do not know and cannot understand. I do not know what will happen through all of this. What I do know with all my heart, is that MY GOD IS GOOD! He will empower us to get through this, whatever is to come.
I will lead the blind by ways they have not known, along unfamiliar paths I will guide them; I will turn darkness into light before them and make the rough places smooth. These are the things I will do; I will not forsake them. Isaiah 42:16