July 3rd and remembering

What comes to mind when you think 4th of July? Traditions? Places? People? Fireworks? BBQ? For us, that question is simple. It is the holiday weekend when everything we knew about anything changed. The weekend all the fun plans went out the window. The race we had planned to run as a family. The sibling time staying up late movie-watching. The lake time with Dad. The yard games. The food Mom would prepare for us. The weekend we learned who our people were. Who our God was. It was the weekend we learned that Judah had a brain tumor. 

Tuesday, sitting on the porch at my parents home, looking at the lake, my older sister said, “5 yrs ago today”. That’s all she said. We all knew what she was referring to. Because for us, the 4th of July holiday is a harsh reminder that we are not in control and cancer is indiscriminate.

Judah got 2 fevers around the 4th weekend. He is getting chemo today. Needless to say, we didn’t need a reminder that Judah is battling brain cancer. And yet, Judah was present throughout our 3 days at my folks. He played the Ninentdo Switch with his cousins, teaching them to play his favorite game (Mario + Rabbids Kingdom Battle) and learning to play theirs (Fortnite). He watched Little Einstein’s (Pat Pat😂) with his Emmett and Stella. He came out for the fireworks, which he has never really done, and loved every second of the booms and lights. 

As I watched on, in awe of this kid who has sensitivity to loud sounds and has an acute memory for negative experiences, and thanked God for him. For the warrior He made Judah from the beginning. For the memory, now burned into my memory,  of my husband guarding and helping Judah assist him with fireworks. For my 4 oldest nephews who have never stopped stepping into the akward spaces with Judah to join him, encourage him, and accept him. For siblings who sit in the muck with us and play cards, cracking jokes, and lifting our collective spirits. For parents who help with it all without a smidge of martyrdom or jealousy.  For the sunshine and water and great books. For our 2 beautiful younger kids who are navigating Judah’s cancer better than I ever imagined while unknowingly wrapping up my wounded guilty-mom-heart with their smiles and requests for stories and snuggles. 

I have floundered the last 3 weeks. I have battled shame and disgust. I’ve been both bound up and emotional. I have been manic about tasks until I am no longer able to function and all the things fall to the wayside. My people love me anyway. But as I spin, my thoughts latch to the idea that I can wrest control from this cancer. And when I have enforced my control on all the moveable pieces in my world, making us all miserable, Judah still wakes in the middle of the night sick. His drs still don’t have answers. Matthew and I still have no peace or deep sleep. Because the idea of control is a lie. There is no control. There is only being confident in God’s faithfulness. And then moving, carrying all the swirling doubts if necessary, in the direction of the of the One who fights for us and goes before us. Every ‘yes’ and every step is progress.

The song giving me life this week is Oxygen by Stephany Gretzinger. A bit of it goes:

          Sometimes my very best

           Is only my weakest yes

          You see strength in every

           movement.

           Baby steps and short breaths

           Anything is progress

           You sustain my every moment

~Wendi

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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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Feeling is exhausting

It’s 7:15AM and I’m, yet again, sitting in the ER with our Bug. We have been here since 5.

When we woke to Judah crying out for help, I assumed it was that he needed help with the feeding bag. I groggily got up and walked into his room. He was moaning and said he needed help with the bag so he could pee  I reached down to help him up and his hand was on fire. Thermometer read 104.4.

I am great under pressure. I’m wonderful at comforting and helping. I laugh and cry easily and embrace ‘all the feels’! My 2-ness with a 1 wing makes me great at these middle of the night, sick, moments. When things get stressful and 8-ness takes over I can become a machine. I get things done, making sure everyone knows what they need to know. Inefficiency drives me mad. And usually, the tears are turned off. You get ‘business Wendi’.

Tonight I cried to the ER Dr. I do not do that. I was telling her how frustrated I was that we keep showing up here and no one can figure out what is causing Judah’s fevers. And I started to cry. In trying to stop myself, I made things worse and started breathing unevenly. And I was morbidly embarrassed. The voices in my head telling me that I should be.

“What a ridiculous way, for a seasoned mom of a kid with cancer, to act. This Dr now no longer takes you seriously because you are falling apart over nothing. Suck it up. There is a time and place for those tears and now is not that time.”

Thankfully, Judah slept through my blubbering and the Dr left shortly after.I sat on that uncomfortable chair, watching my boy sleep, thinking about all the things I was beginning to believe about myself. None of it was true I knew that. And yet, I felt as though I was being weighed down by all my inabilities. Matthew texted me:

“The Bible apps verse of the day was no weapon that is fashioned against you shall succeed, and you shall refute every tongue that rises against you in judgment. This is the heritage of the servants of the Lord and their vindication from me, declares the Lord.
‭‭Isaiah‬ ‭54:17. So I’m praying over that.”

Jesus is good and His love for us is real and tangible guys. While my soul was being crushed by judgement and I was failing to see my worth or abilities, my husband sent me a bible verse that addressed those very things. Jesus has shown me over and over that He wants to and will show me His love and care for me in little ways. I just have to ask, look, and see.

We are getting admitted. The Drs say there are too many unknowns what with Judah’s, chemo, surgery, port, and these unexplained fevers. They don’t want to send us home in case they’ve missed something. We are still waiting for a room but we’ll be somewhere on the 2nd floor/North Tower.

Pray with us that the drs/tests will reveal something that is causing these fevers. That Judah will not be broken-hearted over getting admitted again. That he will continue to heal. That spiritual warfare will have no foothold here.

Thanks

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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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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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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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