Another headache and fever but…

No ER!


We got to Mom and Dad’s around 3:30 yesterday and played and swam (when it was raining 😏). The day and evening went as usual. The kids ate while playing video games and stayed up late just goofing off.
Fast forward to midnight when Judah comes into our room complaining of a headache. We got him in our bed, took his temp (normal), and propped him up hoping this was the worst of it.
At 4:30AM, I felt his belly and it was super hot. So we took his temperature – 102.8. We decided to wait 30 mins. If it went up, we’d call the on-call Dr. If it went down, we’d wait it out. 5:00AM rolled around d and his temp was up to 103.4. So I called the on-call Dr. He was so lovely. He didn’t know Judah or his history but he listened and was reasonable. I told him that they have always gone down by the time we get to the ER and that we are actually farther than normal for the holiday. Sonhe said, ok his counts are good, yes? I’m going to let you watch him. If it goes up, call me back and he has to go to the ER. If it goes down, you can stay home. I will let Dr Spiller know tomorrow.” And by 6:30AM it was normal.
We are tired again. And hoping this is not a foreshadowing of what this week will look like. Because this is how it startedast time we had 3 fevers in 4 days.
Prayers we get to enjoy our time here at Mumzy and Papa’s and Judah doesn’t get anymore fevers until chemo Thursday.

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don’t stop advocating

Last Thursday was a rough day. The fever at 5am. The ER visit. The CBC normal, again. But there was a change in our visit. Matthew requested a CT and the ER Dr agreed to do it! Fortunately/Unfortunately, it was normal too. The ER released us to Clinic for chemo. The Dr had results from all the tests she ordered, and again, they were mostly within normal ranges. His results did show there was inflammation somewhere. But no clue where.

We spent the weekend relaxing and resting. We played video games, watched movies, and enjoyed some much needed snuggle time! We also started the conversation with St. Jude. We gave the ok for them to request and receive all of Judah’s medical records. Vanderbilt sent records Tuesday (faxed and mailed). ETCH hasn’t sent anything yet, but our St. Jude coordinator assured us that they are the best at getting what they need. So we are leaving it to them!

And with that ball rolling, Vanderbilt is moving in the direction of more aggressive diagnosis and hopefully, in conjunction with St.Jude and ETCH, we will get to the bottom of what is causing Judah’s fevers and headaches. We are of the opinion that the more eyes and brains looking at Judah’s records, the better! And we are so lucky to have so many Drs that care. Sometimes, it just takes a fierce advocate to get everyone on the same page and Matthew and I are happy to be that if it means Judah gets what he needs. We will keep on them. We will not stop. It is our job to fight for those that can’t fight for themselves. In our case, it’s Judah.

Who could you be fighting for today?

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Nothing pretty to see here.

Since the last post, Judah has been to the ER 2x’s and had fevers 4x’s. 2x’s we chose not to take him.

This morning, at 5am, when Judah came in with a headache and fever, Matthew and I discussed going or not going. We said, this is nothing new. And the ER would do nothing new. But we want an MRI or CT of his head while he has a fever. So we decided to go. I called the on-call oncologist and went through the same story I always tell. Because it’s always the same. I listened to his story (we just need to check his counts and make sure he’s safe) and tried not to interrupt him because I know this speech. It’s also always the same. When he told me we needed to take Judah to the ER, I asked him if he would order a CT or an MRI.

Dr: On Saturday. No probably not. If he is admitted, maybe.

Me: I know it’s super inconvenient that Judah always gets sick on the weekends and holidays. But he’s had these fevers and headaches for 2yrs and no one has done anything but blood work. If that’s all they are going to do, why should we go?

Dr: (say it with me) We need to make sure Judah is safe.

So Matthew is at the ER with Judah as I write this.  And they are doing blood work.

I cannot speak for Matthew. I can say, for myself, I’m losing my faith. I feel it slipping. My hope trading for cynicism. I don’t believe in Judah’s Drs but I have said before that God can work through anyone. But He’s not. Judah is sick and he keeps getting sick and NO ONE WILL HELP HIM! Unless there is a Dr, like Phil Noe, the guy who found Judah’s tumor almost 6 yrs ago, that WANTS to figure this out, do different testing, while he’s running the fever, they won’t figure it out. They will keep pretending like they are keeping him safe when really they are playing it safe. Everyone thinks it’s the tumor. And they won’t look anywhere else. And maybe it is the tumor. Maybe it isn’t. But we won’t know if they won’t look at his head while he’s running a fever!

We are sad. We are angry. We are utterly exhausted. It sure would be nice if the Creator of the world, would give us just a little leg up. Until then, we are trying to figure out where to take Judah next. To find someone interested in the Judah puzzle.

~Wendi

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This week is almost over!

The last 8 days have been hardly easy.

Judah had surgery last wednesday and continue to be in serious pain until Tuesday, when he seemed to turn the corner. I think the healing and recovery was lengthened because he got chemo two days after surgery . It was 1 drug short of a complete regimen, but it still knocked him down pretty low.

With surgery and chemo recovery happening, we honestly could have “left” the training and learning how to use the g-tube. Needless to say, this house got little to no sleep.

But we are getting the hang of it. Judah’s taking in more feeds and Matthew and I are feeling more confident hooking him up, flushing, and clamping him!

He has color again. He has a bit of energy. He has a smile. And he is back to loudly narrating his game play. This weeks obsession, Mario + Rabbids Kindgom Battle. He’s been asking for it since he got his Switch from the Amazing Currans! I was hesitant to buy it for him because, honestly, it looked like he would get bored of it. It’s not a typical video game. Boy was I wrong. He LOVES it!

Current prayer needs:

1) that the dr at Vandy will call us with ideas on chemo

2) that the chemo can continue and be effect at killing the cancer not just stopping growth

We would love prayers for this weekend (really EVERY WEEKEND)

1) that Judah will stay fever free

2) that he will continue to feel better and better

3) that there will be NO reason to call the on-call Dr or go to the ER

~Wendi

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Uncommon

 

 

 

Almost 5 years ago, Matthew and I brought Judah to East Tennessee Children’s Hospital for an MRI. The drs wre looking for what is called a chiari malformation. But they found a brain tumor.

Today, Judah went to surgery to place a peg line and the endoscope revealed acute erosive esophagitis.

It hasn’t escaped me that this discovery is eerily similar to the discovery of his tumor 5 years ago. While Matthew and I desperately searched for a Dr who could to figure out what was causing all of Judah’s problems, a puzzle-loving Nurse Practioner decided to look in an uncommon place. And in looking for the uncommon, discovered the answers. The common answer to Judah’s weight/nutrition problem was to put in an ng-tube. But we were lucky enough to have an oncologist who had our back and heard our concerns. We wouldn’t have discovered his esophagitis if we had agreed to the ng-tube. Uncommon.

I’m not sure why things have never been ‘straight forward’ with Judah. I am learning to trust the holy spirit, and my momma gut, over the ‘common’ list drs give us though.

Because in all honesty, Judah has never fallen into the common category! When he was 2 and could see, say, and pick out all his letters in any order he wasn’t common. When he was solving puzzle for 5-8 yr olds at 3 he wasn’t common. When he was pronoucing 9 syllable dinosaur names at 4 he wasn’t common. So when he started having medical issues and none of his symptoms fit in any box, we shouldn’t have been surprised. His sleep apnea was central not obstructive. During his brainstem tumor resection his 9 and 12 nerves (tongue movement a and swallowing) were irritated and never recovered, uncommon. Once he started chemo, he had an allergic reaction and though it was working well at stopping the growth, he had to switch to a chemo with a massive pill regimen. At 5, he had no trouble swallowing capsules without water. I know adults who cannot do that. And then he stopped growing. Through all that, he never complained. Was compliant and sweet.

Fast forward almost 5 years to these mysterious headaches and fevers, which still haven’t been solved and never respond to medication. Failure to thrive at almost 10 years old. Severe diarrhea with the chemo, which is listed as a possible but uncommon side effect. And now acute erosive esophagitis, which the chemo ‘can” cause, but our oncologist has never seen in all her years giving this regimen. And through his pain, Judah continues to say he’s good. Not because he’s a liar but because he doesn’t want to worry anyone. He doesn’t want to put anyone out. He sweet and compliant, still. A silent warrior.

So here is the question that’s been floating around in my head all day: if the kid who has been through and is going through all that can be kind, selfless, brave (at least more than most in the same situation) why can’t I find a bit of that for others? Why, if Judah can think about how others may respond to his pain BEFORE he will even admit he has any, can’t I think about how my words will effect others before I open my mouth? The take away for me is this, I don’t know why Judah is so good at ‘being’ but I do know that I want to be more like him. Quick to hear, slow to speak. Maybe we can all take a cue from him and be a little more uncommon?

For now, the lights are out in this hospital room. I have prayed over my son and hope with all the steadfastness I can muster, that Jesus will continue to go before us and protect us.

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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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