long weekend and plans to fatten Judah up

Family can make the hard days seem less hard.
Matthew and I took  short trip to Washington, DC and while we were gone, Mimi and Papaw, Mumzy and Papa, and Aunt Bam, Uncle Josh, Marshall, Eli, Gabe, and Stella entertained and loved on our 3 kids. All 3 got the love and attention they crave when there are plenty of adults to go around.  1 in particular needed a bit more tending to than the others.
Judah.
When Matthew and I got back from our trip, we couldn’t wait to hug our kids. We just wanted to give our babies a big hug. When we pulled up to Mumzy and Papa’s house, Emmett and Camilla Kate ran out to greet us. We wrap them up and old them how much we missed them. I looked up from my little girl’s head and saw Judah, sitting not 3 steps from the front door. And it was all I could do to not cry. I gently scooped him up an carried him in the house. Sitting in the wing back, my arms enfolding Judah, I saw a version of him I have never seen. Not in the year leading up to finding our then 4 yr olds brainstem tumor. Not in the 14 months of chemo he suffered through from 5-6 years old. He looked like a ghost of himself. Heavy bags under his eyes, frail, skinny body. Eyes spacey and sad. And he was tired. so tired.
He stayed in my lap for half and hr. Just resting his head on my shoulder, his hand in mine.
Over then next couple of hrs Matthew and I got the run down on how he had been feeling while we were gone. The jist was, not good. He had begun looking bad on Saturday night, and on Sunday he woke in bad shape. They told us that Sunday he basically moved from the the floor to the couch to floor. He ate nothing. He had no energy or strength. He could not keep anything in his belly even if he wanted to eat. Monday he continued to feel the same way. And it was a holiday. We talked about taking him to the ER.  With 2 drs in the house, and an attentive nurse a text away, we had plenty of eyes/ears on his health. The consensus was as long as he is staying hydrated, we could wait until he morning. The night was long. Matthew stayed up with him most of the night, praying over him, watching him breath, helping him to the bathroom.
At 9 AM, I called Judah’s Dr she said she wanted to see him. At 12:30 Judah and I got in the van and headed to ETCH Oncology Clinic to see what could be done for him. Thankfully, he was looking a bit better. He had more color in his face. He didn’t have the energy to walk to the clinic so I carried him. However, right before the nurse came back to get us, he decided he wanted to walk to his room himself. He walked as if he was  following a zig zag line, not staggering but certainly not straight. But I decided when we first found out about his tumor regrowth that I was going to allow him the independence to do and speak for himself as much as he wanted. So I kept my distance, keeping control of my face so he didn’t see worry. 
A couple of hours later, after accessing, blood draws, meds to help stop the diarrhea, and iv fluids, we discovered that, other than typical low labs associated with 48 hours or diarrhea, his labs looked ok. Dr Spiller came in to talk with us. I adore how she begin every visit by talking to Judah. He is her patient after all! She cares so deeply about how he feels, what he has to say, and uses the most friendly and unpatronizing voice each time she address him.
Dr. Spiller: Judah, how are you feeling?
Judah: good
Dr. Spiller: Judah, this isn’t what good feels like. This is what bad feels like.
But honestly that is just how Judah is. 9 times out of 10 the kids will tell you he feels good or is good, even when you KNOW he isn’t. he is compliant and sweet and has a difficult time saying things that may upset ‘his people’. This isn’t super helpful when we, his parents or drs, ask him to tell us how he feels. Or identify what hurts. Or even tell us when he has been sick. He doesn’t see it as lying. He sees it as protecting himself and those he loves from discomfort. I love that about him. It is also scary at times though.
 After Dr. Spiller did her exam, we went out in the hall to talk about his weight, nausea, and the need for a feeding tube. She agreed that Judah needed a feeding tube put in asap and wasn’t opposed to a G-Tube instead a NG-Tube. The problems that Dr. Esbenshade described are real. But she said those problems (not healing and getting infected etc) are more common when people are getting chemo every day for long periods of time. When their bodies don’t have time for the blood counts to rebound. But she said that Judah isn’t in that boat. We went over the pros and cons of surgery verses no surgery and in the most lovely way, left the decision up to us. Judah does not want an NG-Tube. He doesn’t want surgery either. But what he wants most, is to just be Judah. And the G-Tube allows him to hide the feeding tube.
We got home around dinner time, and Judah fell into a great rhythm with his cousins. The fluids did him so much good. Over the next couple of days, Judah did much better, eating and drinking, swimming and playing Wii. He and his siblings and cousins lived it up! And the adults had some much needed connection time. Being seen by your people is one of the great joys of being alive. I long for it and got an overflowing portion.
Judah’s surgery will be Wednesday at noon. He will have to stay for 2 days. And then he will be able to get the nutrition he needs to fatten him up. What a wonderful day that will be!
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Judah is still very sick

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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Chemo 4 done and side effects ramp up

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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Last day of school and 6wk MRI

Judah and Camilla Kate (Cricket) had their last day of school today. It was full of fun and parties and sweet hugs and goodbyes. Thankfully, the co-op family is close and we will still see our friends throughout the summer.
While the kids were at school, I busies myself with cleaning and packing and searching for Judah’s long lost bey blade he “really needed to show to Gabe!” *Insert exasperated 9yro voice* Packing for Nashville isn’t usually very hard, but this time, since he’ll be doing chemo there tomorrow, I had to pack for chemo day too. It was hectic and frustrating and I did not find the bey blade though I searched for almost 30 dedicated minutes😬
As I loaded the car, I kept running through my mental list of must haven’t items knowing I would forget something. And I did. Matthew and my toiletries…of all the things to deal with on chemo day, stinky breath and armpits was not one of them. We weren’t far from home when I realized it so we went back!💥 My mother has always told me to make a list, put it the car when you think of it…I’m a great listener 😂
After dropping off Emmett at Mimi’s, meeting Mumzy to get her lasagna, we finally got on the road.
God has blessed us with beautiful weather and traffic and we are about to pull into Bam’s as I type this. But before I leave you, I want to request a few specific prayers:
1) That Judah’s rocks his MRI at 7est and is very still so the picture is crystal clear (he does them awake bc he’s a rockstar!)
2) That the MRI shows that the chemo is working and Judah’s tumor has stopped growing (or at least shrunk)
3) That tomorrow’s chemo (begins at ~10am) goes by quickly and that the nurses are kind.
4) That Judah doesn’t get sick during or after chemo.
5) That God continue show us His enormous love and care whether through continuing to provide for our every need (And He has!) or healing Judah completely or both!Matthew and I cannot thank you all enough for showing up and showing out for the Thacker pack. We are in awe at how The Mover of Mountains has battled for us through y’all.

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Sleep, chemo side effects, and Jesus

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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We all want the miracle

Since Judah’s rediagnosis, I have found a renewed urgency to soak up God’s words. I remember the last time we went through all this, God had prepared me by giving me a desire to memorize His word. When I was afraid or sad or joyful, His word would linger in my mind, an encouragement to me. I sit here this morning, praying for a friend who is having surgery this morning, and I long for those scriptures I used to have at my fingertips! I have a distant memory of them, but have to look them up now. So as I’m thinking and praying, I know there is a scripture I want, I just can’t think of it.

But I call to God, and the Lord saves me. Evening, morning and noon I cry out in distress and He hears my voice. He ransoms me unharmed from the battle waged against me. ~Psalm 55: 16-18

We are distressed. We live in a time where the world feels sick. But I love this bit of scripture. “He ransoms me unharmed”. Strong’s says this word ‘ransom’, at its root, means to deliver, by any means, preserve, redeem, rescue. And how are we redeemed? Unharmed. Also translated as ‘in peace’. This Hebrew word is Shalem. It means to amend, make good, finish, repay, restore, recompense. So this doesn’t mean unharmed the way we think of it. It means, when He rescues us, He will restore us. This is a beautiful picture of love. Because love doesn’t mean we are always safe and happy. But it does mean showing up. Showing care. Participating in restoration. Now, more than ever, I need to know this.

Because we all want to experience the miracle, right? We all want to be the 1 in a million. And when we aren’t? What happens to our faith then? For me, it’s knowing that God promises restoration.  And He is moving in ways we cannot see for His and our good.

Would it be nice to have the rescue story? Of course. For now, though, we will allow ourselves to be satisfied by His care and provision. And we cling to hope, asking God to keeps us close and direct our steps.

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When it rains it pours (2)

Last Tuesday was a busy day. Judah and I were still in Kingsport helping Cara. She had a follow-up appointment with her surgeon in Knoxville. We all piled into Cara’s van (Cara and her 3 kids, Judah and me) and drove to my house where Mumzy (our Mom) was waiting to take care of all the kiddos while we were at the Dr. We made great time and dropped the kids in time to get lunch before hand.

Cara’s appointment went great and the Dr said everything looked good. It was quick and easy. We swung by the house and got Cara’s kids, leaving Judah at home with Matthew so he could go to school Wednesday, and got on the road to go back to Kingsport.

Everything went great Tuesday night–in Kingsport. I got the boys ready for bed, Billy read them a story and then we put them to bed. Cara, Billy and I got to hang out for a bit and then went to bed. The next morning, Matthew texted me during my quiet time to see if “I had a second to talk”. This is never a good sign. I called. Judah had spiked a fever last night and after careful thought and testing out of a hypothesis, he decided not to take him to the ER. Judah is fine. His fever and headache behaved the way they always had in the past. The protocol is to take Judah to the ER for a fever over 100.3 because of the port. We knew it wasn’t something like a blood infection, but as his Drs have said, there is no way to KNOW from home. Taking Judah to the ER every week in the middle of the night is not feasible. We need a different solution.

I got home Wednesday in time for dinner and enjoyed time with my kiddos. I was really glad to be home. The rest of the week went on like usual. Then, Saturday night at 3AM, Judah stumbles into our room. His head is killing him and he is running a fever–again. I got up with him, took him downstairs, took his temperature and heart rate, and tried to figure out what to do. Fever was 102.5, heart rate was between 145-155. This was obviously a ‘take him to the ER’ thing. And yet, I waited. I gave him a pain med that does NOT help with fever, to help with his headache and arm/leg pain and decided to wait 30 minutes to see how he was doing. That 30 minutes crept by and when it was finally time to reck him, his fever and heart rate were no better so I got him in the car.

At the ER they took him temperature and it had come down to 101.7 but that is still too high for Judah to have. They accessed his port, took a blood culture and cbc and started a round of antibiotics. After 1.5 hrs, his cbc came back relatively normal for a kid on chemo and he was discharged with orders to talk to our Oncologist Thursday. We were home by 6:30AM and though I was exhausted, Judah had gotten his second wind and the other 2 kiddos were awake. As you can imagine Sunday was a LONG day. Judah was not particularly nice but would you bet if you’d gotten up at 3AM?

Our prayer is that someone finds out what’s causing he headaches and fever so we can stop them. And also, selfishly, that Matthew and I can find ways to talk to Judah, patiently and with love, when he is spewing meanness at everyone around him.

Chemo is Thursday.

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When it rains it pours (1)

This week has not been a great one for Judah though at the start of it, it looked like it would be great!

On Sunday, he and I went to Kingsport to help my younger sister after she had rotator cuff surgery. Judah and Will love each other and play the same way; that kind of sit with action figures, cars, whatever imaginary play. They had both been looking forward to it.

We got there around the kiddos bedtime so there wasn’t time for any activity. They just went straight to bed. Cara and I stayed up for a bit to talk and the retired to bed too. Around 11:30 Cara comes downstairs and says “Judah is saying his foot is really hurting him.” I figured it was cramping and told her to send him down to me, apologizing that she had to get up with him. A few minutes later, here she comes, CARRYING, my 9 yr old down stairs. Reminder: she had rotator cuff surgery 10 days ago. Isaid, “What are you doing?? Put him down! He can walk.” Little did I know, he couldn’t walk. She put him on the bed and I could see in his face that he was in excruciating pain. His foot was not swollen or bruised but touching anywhere on the top was more than he could take. Even touching the arch and pressing up was too much.

I started to rack my brain. He can’t have Motrin because it things blood and he is taking chemo that things blood vessels. He can’t have Tylenol because it masks fever and he has a port so if it got infected, he would get real sick real fast. 

I started to cry. I was, again, away from Matthew and Judah was hurting and I didn’t know what to do. So I laid my hands on Judah and prayed over him. I prayed to Jehovah Rapha to heal Judah’s foot. I asked him to relieve Judah’s pain so he could sleep. Judah even prayed for himself. Nothing changed. I don’t know what I was expecting but I will say I started to feel an anger I haven’t felt in a long time. An anger about the injustice my boy has lived through thus far.

After 30 minutes after trying to calm him, I called Matthew who I said, “oh yeah. He feel today and I thought to myself, he probably just broke his foot. You probably need to take him to the ER for an x-ray.

WHAT?!?

I wasn’t calm. 

Thankfully Cara brought ice and, after taking his temp and deciding it was worth the risk, I gave him Tylenol. He was able to sleep soon after. 

The next day, he wouldn’t put any pressure on it. In fact if he fogort and accidentally put pressure on it, he would cry out in pain. We kept ice on it but it didn’t seem to be improving. I knew we were going home Tuesday so I decided to wait. 

When he went down for a nap, I went out into Cara’s yard and did a prayer walk. By prayer walk I mean, I wondered around talking to God — voicing my anger and frustration that Judah keeps getting sick and hurt. That cancer wasn’t enough. My mind was fixated on a particular ‘why’. Why does he have to fall and possibly break his foot when he is already fighting cancer? Why, when he never has energy or desire to do much of anything active, does he have to get hurt playing outside with his sister? I felt so abandoned. So alone. I prayed for Jesus to show me a bit of His love for me. For Judah. 

I listen to praise and worship music all the time. Most of those songs talk about God’s faithfulness. His ever presence. 

·Before I call, before I ever cry

·You answer me from where the thunder hides

·I can’t outrun, this heart I’m tethered to

·With every step, I collide with you.

~Fierce, Jesus Culture

It’s weird. I didn’t feel abandoned because of Judah’s cancer. I felt abandoned because of all the other stuff. The anger he has, the fevers, the not eating, the cramps, the broken foot. Where my heart is, I felt empty. Did I do something? I didn’t know what else to say. I was sad and angry. I needed Jesus. My strength was but a breeze compared to His hurricane. My peace was turmoil. It was all a mess without Jesus.  

After a couple of hrs, I went to ck on Judah and he was awake. I asked him how he felt. How his foot was. He said, “it feels better, I think. I can move it around!” And he wiggled his toes. And I cried! “Thank you Jesus for showing us Your love!” And Judah said, “yes!”

God is good. And He loves us with an undying, undeserved love. It is easy to have nothing but apathy for God when things go wrong while giving people all the glory when things go right. We have to learn not to divorce those things. God is good and bad things happen. God uses His people to love His people. (~Cara Mcmillin)

The rest of the week in the next post.

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Wear Your Love!

Wear Your Love: #TEAMJUDAH

All proceeds from shirt and magnet sales go to support a celebratory trip for Judah’s No Mo Chemo Surprize!  Orders can be placed through the email above by May 10th and should be available by May 21st.  Please include name and prefered contact information with your order. Payment options include cash, check, or paypal/venmo!

For sizing charts and a printable flyer click on the link below! 😉

Order Info

Adult shirts: $20, heather purple, soft Bella+Canvas

Youth shirts: $15, white, soft Next Level

Car Magnets: $3 each, 4 inches

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second chemo here we go

Judah’s 2nd chemo is today. Matthew left for another Atlanta meeting at 5AM but thankfully I had some people come together to help me with Camilla Kate and Emmett.
We got to clinic at 9:45 and had check-in and labs quickly. All his labs were noraml except he is still a bit dehydrated. Hopefully the orange Gatorade Daddy got him will help him drink more often.
Chemo didn’t arrive until 1. It’s now almost 2 so we are about 1/2 way through the first bag. Each bag takes 1.5 hrs. It’s gonna be a LONG day. The nurses brought Judah lunch around noon. Me on the other hand, well let’s just say I’m really looking forward to the dinner from Two Rivers Church Worship Team tonight.
So far, the chemo is going well. We’ll probably be here until 5 though.
Prayers for patience and stamina!

2nd Chemo is finally done! Going home at 4:30 so my guess was very close! Today was a long long day, but Judah was in much better spirits.  He got going quickly on homeschool work and enjoyed the very cool entertainment options at ETCH.  Please join us in continuing to pray that Judah would not struggle with side effects from his treatment and that the chemo would be destroy his cancer!

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