Mutation and devastation

Posted on by Wendi Thacker

 

Today we learned that Judah’s Low Grade JPA tumor has mutated into a very aggressive High Grade Glioblastoma. It is technically a Diffuse Intrinsic Midline Glioma (Dimg). There is no cure. 

Judah looks great. You’d never know he had a cancer rapidly dividing in his brain stem. It is a mercy that he is in such great shape. Because of this, he will be able to start radiation this coming Tuesday. It will be everyday, 5 days a week, for 6 weeks here at St. Jude. It is easier on the body than chemo. And it will help Judah feel better for a while. Unfortunately, the radiation is only a stop gap. Once Judah’s tumor starts growing again, there are no options. We will do our best, with the help of palliative drs, to make him as pain free and comfortable as possible. 

And in the meantime, we will soak up every second of Judah’s good time. We will take trips and laugh and burn his everything into our memory. We will love each other with all we have.

Thank you for your prayers and encouragements. Thank you for sticking in this with us, even though it’s ugly and hard. We are broken. Devastated. There will be no way to mend us without Judah.

I will continue to post here with updates. The majority of the Thackerpack’s memory making will be documented on the blog and instagram (thackerpack.com and IG: thackerpack)

Everything is the same. Everything is different

Posted on by Wendi Thacker

Brooklyn, Brooklyn take me in.
Are you aware the shape I’m in?
My hands they shake my head it spins.
Ah Brooklyn, Brooklyn take me me in.
Dumbed down and numbed by time and age.
Your dreams they catch the world the cage.
The highway sets the traveler’s stage
All the exits look the same.

To be honest, I never got on the Avett Brothers train. I don’t NOT like them. Just never sought them out. So I have no idea what this song is supposed to be about. But as I was listening to a Prime Station, the above song came on. And some of the words struck a chord. 

I wonder if Jesus sees the shape we are in down here? 

When we got invited to St. Jude we were filled with a renewed hope. And then Friday happened. Judah had a MRI and the news was not what we were expecting. His new tumor is continuing to grow. It has taken up the entire 4th ventricle. The original mass from 5 years ago is also growing. Chemo isn’t working. The neuro oncologist didn’t know if surgery would be an option. Surgery? Biopsy? Radiation? Inhibitors? All were mentioned. 

An appointment with a pediatric neuro surgeon was made. He told us that surgery wasn’t an option. That Judah’s tumor is diffusing and that makes differentiating between healthy brain tissue and excising tumor tissue impossible. He did say he wanted to do a biopsy. That a biopsy would allow St. Jude to sequence his tumor, look for markers and find a more targeted treatment. But what does no surgery mean? It means our options for treatment just got smaller. And the truth is, we never wanted Judah to have to go through surgery again because of how incredibly hard and heart wrenching it was to watch him relearn shaping and speaking his words, taking steps, concentrating on getting basic things down that no kid should have to do twice. But we would do surgery again if it meant he had to option to fight for ‘himself’ back.

 

Radiation oncology consult was yesterday. We went into that meeting feeling so vulnerable and frightened. Lack of factual information can do that to a person. What we had always heard was that because of where Judah’s tumor is (brain stem), radiation would be the last choice. That it was dangerous. That it could cause cognitive deficits. Physical deficits. New cancer later in life. 

I wish I could say that all our fears were assuaged. They were not. If anything, the hypotheticals made sitting in this awful waiting cycle worse. Because now we know, if the biopsy comes back 1 way, those hypotheticals all of a sudden become reality. We are doing our best to set all the information we learned aside. Store it away with all the other information we have learned over the last 10 days. It will still be there when we need it.

Today we were admitted to Le Bonheur Children’s Hospital. Judah will have a CT scan and MRI for precision measuring to prepare for his biopsy surgery tomorrow. While we are here, the Tumor Board at St. Jude is happening. All of their best and brightest minds will be together to review Judah’s case to try to come up with the best course of action to stop Judah’s tumor from growing more. 

The biopsy will happen tomorrow and is scheduled for 7:30 AM. We have been told that this is will not be traumatizing for him. That the surgery will take ~2 hours and that if all goes well, Judah will be off the vent and in his normal room right away. He will have normal recovery from anesthesia; groggy, grumpy, sore throat, and that his head will hurt. But it already hurts more than it should. The surgeon said he should wake up talking and walking etc. And that is such a relief to all of us! Before the biopsy, we decided it would be a good idea to cut Judah’s much loved long hair. Surgeons are not barbers. We know this from last time! Judah was very unhappy about having to have his hair cut off but we gave him the coolest hair cut we could think of, considering her had to have the whole back of his head shaved!

The biopsy results will take about a week. And Judah will be in the hospital for the same amount of time. We spend that time trying to be present and also distract ourselves. Food. Conversations. Movies. Switch playing. Snuggles. Kids being kids.

But we are going into this biopsy already wounded. We aren’t in the best shape…dumbed down and numbed. All the options in front us feel like bad ones. We covet prayers. Over the last 6 months, it has become immensely difficult to find words, any words, to pray. We cannot keep asking for God to show us He cares. Asking Him if He sees our suffering. Asking Him to give us a glimpse of His goodness. Because we’ve been begging. We believe that God is providing for us through our family and community. Moving their hearts to love us. Meals. Finances. Encouragement. And it has been more than we could ever say thank you for. Then we wake at 3AM to Judah screaming in pain. And we go to another Dr and they tell us more and more bad news. And then our 3 year old asks his big brother if he is better yet. Our 5 year old asks when we get to go home so she can see her friends and go to Kindergarten. It is all we can do to keep moving forward. We do our best. Smile and squeeze all our kids and say yes as often as is possible. And then hide when the wracking sobs come. The moment passes. We breathe. Matthew looks at me. There is an understanding and “here-ness” shared between us and we collect ourselves and start over. And I think it’s that “here-ness” that I miss from God. I used to feel His presence so keenly. I could feel his heart for me. For Judah. And could see His love for us in the little everyday things. Even when things were bad with Judah (or anything else), He was with me. But that’s gone. In it’s place is a wretched, broken, emptiness. A constant reminder of just how small and alone we are on this Earth. And I want so badly to keep believing that He isn’t finished with this story. That I can trust Him with my heart. With our son, his future, his life. It feels like too far to go. And it’s not because God hasn’t miraculously healed Judah, though that’s what we long for. It is because we feel abandoned and isolated from our Maker. And we don’t know why?

Where is the God who tells us he loves us and has plans for us? The Good Father, our creator. The mountain mover. The raiser of Lazarus. The silencer of storms. The healer of many. 

I don’t know. I wish I did.

St.Jude journey beings today

Posted on by Wendi Thacker

We are pulling out of the driveway, headed to St. Jude for Judah’s patient evaluation. We will be there through Monday so we had to pack like we are going on a week long vacation. 

Toys and books for the kids, books and technology for parents, clothes, sleep friends, toiletries, medicines, chargers, waters, snacks, wallets, phones, glasses, hair ties, swim stuff, and then all of Judah’s oncology stuff! And it it just a lot. Even with packing most of the stuff yesterday, we still ran around for 2 hours trying to check every box. 

But we are on the way now. We are so very thankful. And also incredibly anxious. So many unknowns and hopes. St. Jude has pursued us over the last month. Seeking out all of Judah’s medical records from his various providers, connecting with us several times a week with questions and encouragement. They made it abundantly clear that they wanted Judah at St. Jude. That they had plans, ideas. That they were moving pieces to get Judah a spot. 

Last Thursday, while I was enjoying a birthday evening at the Spa with my best friend, St. Jude called with 3 days of scheduled appts for Judah! I missed the call but surprisingly, the number in my ‘Missed Calls’ was a direct line. Matthew and I could hardly believe our luck. When we miss a call from any non-person, it is always a switchboard. I then spend 10 mins trying to ask for the right place/person, hold for awhile, and then leave a message, only to wait 8-24 hrs to hear back from a nurse. Not at St. Jude. 

Today is New Patient Registration. Thursday will be a full day of Drs, consults, and labs. Friday is more consults and the MRI. We aren’t sure when or how we will get the results. We are planning to stay in Memphis over the weekend to spend time with my brother and his family. That way if St. Jude wants to see us Monday, we will be there.

We are in need of prayer and encouragement. We are not sure what St. Jude is going to want to do but we are assuming it will be different than Judah’s current course of treatment. And that is both exciting and scary. The last thing we want is to walk down the road we walked 5 yrs ago. Surgery. But we also want Judah to have the best quality of life. So we are praying that whatever course of treatment he ends up on, where ever he ends up being cared for, gives him just that. And that Matthew and I are able to hear, process, and make adequate decisions for Judah. That we will be strong enough to delay our immediate responses to think, pray, talk, gather information BEFORE making any decisions. That Judah’s tumor will be stable enough to allow us that time.

School is about to start. And it’s Cricket’s Kindergarten year. And I don’t want her to miss that with her friends. I don’t want Judah to miss 4th grade either!We don’t want to spend a long chunk of time away from Knoxville. Our friends, church, school. And we are struggling with the idea of moving Judah’s current care to somewhere other than Nashville. Really because the Kellett’s have been with us since day one 5 yrs ago. Caring, laughing, feeding, distracting us. Talking things out with us, pushing us individually and as a couple to be better. Being our inner circle and safe place to share or not; cry or not; be. And that’s not easy to give up. 

But I’m borrowing troubles from tomorrow. We don’t not know what is in store for us. What we do know is that Judah is suffering and we need answers. We have given Vanderbilt and ETCH a shot and now we are trying something different. 

We love receiving texts and emails from you guys. Encouragement helps so much. Thank you!

The wait

Posted on by Wendi Thacker

Some nights I go to bed with a gut feeling that something is going to be off in the night. Falling asleep becomes a trial and when, inevitably, the bad thing happens, I’ve had less sleep than I should have had. Matthew and I team up, doing what we each do best. We spend the early, early morning hours comforting and treating Judah, all 3 of us really longing for sleep. And then the bad passes and the 2 littles wake, and our “morning” starts. We spend the day trying to keep upright, all the while, dreading the repetitive nature of our new normal.

We are beyond tired. Beyond frustrated. Beyond sad. 

We are in Nashville to try an find some answers. Judah has an appointment with the infectious disease Dr here at Vanderbilt. And he is getting a spinal tap to look for possible causes of the fevers. Judah has gotten 4 fever/headache episodes in 4 days. This morning, his fever was 104.6. This is exactly why we are wanting the spinal tap. But get this, the anesthesia Dr doesn’t want to do anesthesia on him because he had a fever in the last 24 hrs…even though the spinal tap is being done BECAUSE of the chronic fevers. It feels so ridiculous. Dr. Esbenshade wants it done and has plead his case to the anesthesia Dr. 

We will see.

For now, we do what we have become really good at. We wait. Wait for Drs plans, for blood and urine tests to come back, for  the ok for the spinal tap, for any new clues, for the middle of the night and the next fever, for relief for Judah.

Much love and gratitude from the Thacker Family

July 3rd and remembering

Posted on by Wendi Thacker

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

Another headache and fever but…

Posted on by Wendi Thacker

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.

don’t stop advocating

Posted on by Wendi Thacker

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?

Nothing pretty to see here.

Posted on by Wendi Thacker

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

This week is almost over!

Posted on by Wendi Thacker

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

Feeling is exhausting

Posted on by Wendi Thacker

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