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 Patūüėā) 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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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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Orange and White Game and fun with friends!

The Thacker’s got to take 2 of our favorite families with us to the sky box for the University of Tennessee Football Team’s Orange and White Game. I was nervous about how Judah would feel after chemo, knowing it would be a long day. But he¬†did great!

It didn’t hurt that his favorite 2 people were with him. Both so thoughtful and sensitive to what he needs. He truly is so blessed to have these 2 amazing kiddos as his bffs! Listening to Berkley (whose parents are Bama/Auburn fans) cheer “Go Orange Team! Go White Team!” was a highlight for sure. That and seeing Berkley and Maddie in Tennessee orange of course! Lucas and Felicity fit right in with Berkley and Maddie. Lucas stuck right by Judah’s side, which I find to be one of the most endearing and Spirit filled actions. That kid is special!


We ate great food, the kids had about 3 ice creams each and a bunch of popcorn, and we adults had a great time just being together in a great venue. Neyland Stadium is fantastic!

Also, I totally geeked out when I saw Grant Williams in the¬†main area. I was so thrilled that he was such a kind guy. he signed Judah’s popcorn box and took a picture with him! He didn’t have to do that but I am so grateful he did! Go Vols!

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Judah becomes a grumpy teenager

by: Cara McMillin

Today Judah woke up as a grumpy teenager.¬† He was quick with sharp toned one word answers, mean to his parents and siblings, and generally emotional.¬† By lunchtime they hadn’t done any school work and his mood had not improved.¬† Then this happened:¬† ¬†*Cricket is Camilla Kate

Judah to Cricket:¬†You are as useless as purple Pok√©mons!”

Cricket:¬†No I’m not! I’m bright and useful! (While crying)

Judah: Who cares what you think.

Wendi:¬†Ummm I’m not sure how useless purple Pok√©mons are but Cricket is right, she is bright and useful and you will not put people down to make yourself feel better. Your tongue is powerful. It has the power to heal and break. What is Proverbs 12:18?

Judah:¬†(insert grumpy teenage voice) “Thoughtless words cut like swords, but the tongue of a wise person brings healing.”

Wendi: So I want you to think of 2 adjectives that describe your sister and heal her.

Judah: (pause for 10 mins) Funny and playful, maybe.

Wendi: Great. Go tell her that. And on the way think of a Pokémon that is funny and playful and tell her that she is like that!

Judah:¬†Cricket you are funny and playful. Not useless. Like a Pink Pok√©mon¬†not a purple one. (Now he’s crying).

The truth is in him and it will win out in the end.¬† As of now no school work has been done and he is asleep.¬† On the plus side Wendi is taking the chance to spend some sweet one on one time with Camilla Kate and a new phrase has been born, “You really purple¬†Pok√©moned¬†that one!”

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After 5 great yrs, Judah’s tumor has started growing again…

At Judah’s MRI in February there was a new area of enhancement (an area where the contrast agent glows on an MRI) around his tumor. At the time, the doctor said it was an unlikely, but possible sign of growth starting up again and that we should scan again¬†in 3 months¬†but watch him closely for new symptoms. About 3 weeks ago, Judah woke up in the middle of the night with a headache and a fever. We gave him tylenol and put him back to bed. He seemed perfectly fine the next day so we didn’t worry about it much. Then, for the next two weeks, every 48-72 hours the headache and fever would return. By about the 3rd headache, we were calling doctors trying to figure out what was going on. The oncologist said the cyclic nature of the fevers didn’t jive with the location of his tumor, so he thought it was some kind of infection. The neurologist said that without other symptoms, such as lethargy or vomiting, it was unlikely that it was a shunt infection or malfunction. The headaches continued, as did the frustrating conversations with doctors who didn’t think it was a problem and didn’t want to do anything about it. Finally,¬†on Monday¬†of last week we took him to our pediatrician who thought it best to run some blood tests. The normal infection and virus tests were all negative, but Judah’s white blood cell count was more than 3 times what a normal healthy persons would be. “Maybe his cancer team will listen to us now” we thought, but it still took 3 more phone calls and a strongly worded email before they agreed to move up his MRI.

We drove to Nashville¬†Wednesday¬†night, had the MRI¬†on Thursday¬†morning, then back to the oncologist¬†on Friday. We prayed a confusing prayer that begged on the one hand for the MRI to show no growth, but on the other for *something* to show us what’s going on so we could stop it. We got the latter. Judah’s tumor has begun to grow again. Thankfully the mass that is intrinsic to this brain stem (i.e. inside the good brain tissue) seems to be stable, but a small new mass has begun on the outside edge of the old tumor. It grew from a tiny line of enhancement to a 1.3cm diameter mass¬†in two months‚Äô time. I shudder to think how big it might have been had we waited the whole extra month until his scheduled scan. The doctor doesn’t think that surgery is necessary at the moment, but we go back to Nashville¬†on Monday¬†for them to put his portacath back in, thenTuesday¬†morning to start his second round of year-long chemotherapy. We’ll be using a different therapy this time, the theory being that the previous regiment, though effective, failed to fully kill the cancer so perhaps a different type will. There are pros and cons to the new regiment. It’s supposed to be less destructive to his blood counts, so less chance of serious infection and hopefully he won’t catch every cold he comes within a mile of. He only has to have therapy every two weeks instead of weekly, but the infusions take longer so Judah will be in the clinic for 2 to 3 hours every time. This therapy restricts the growth of blood vessels so it’s possible the tumor will actually shrink somewhat while on this therapy, but that same restriction carries an increased risk of things like internal bleeding and bowel perforation. I sincerely hope none of you ever have to read the patient education literature that comes with these drugs. It causes the mind a unique kind of distress when the doctors are saying we need to give your child this medicine to save his life but the warning labels list at least 40 different ways the medicine itself could kill him.

Jesus encouraged us to pray for specifics. So we’d ask you to specifically pray that this chemo regiment is immediately effective in stopping the tumor growth and relieving Judah’s headaches. We’d ask that you pray that the side effects from the chemo are few and mild in nature. That on his follow up scan¬†in 6 weeks¬†it is really obvious that the growth has ceased and possibly even that the tumor has shrunk. That Judah is able to withstand physically, emotionally, and spiritually this grueling year of pain and frustrations. That Wendi and I are able to withstand the same. That this chemo regiment is definitively and permanently effective for stopping Judah’s tumor from growing. And specifically for Wendi and I, I’d ask that you pray for a strengthening in faith, hope, and desire for God. I know, intellectually, that ‘why’ is never the right question for God. He won’t answer it, and even if He did, I know I couldn’t understand it. But that doesn’t stop the voice from my heart from asking why. Knowing it’s misdirected doesn’t stop the resentment that rises up when I’m lying awake with fear and anxiety. So we need God’s good to show powerfully through the cracks in the evil that veils this world. And finally I’d ask that you pray for all those who are committed to pray for Judah, including Wendi and I, to maintain that commitment. The passion for everything fades over time, especially when things seem good, and this thing is going to need some long term, committed prayer to overcome.

Our sincere thanks to all of you for your years of love and continued support of our family.

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Judah’s Home!

We packed up and left Nashville this morning about 10:30 and now we’re home! Judah’s curled up on the couch playing with the iPad and seems to be doing great. He hasn’t experienced any nausea yet from the chemo but I’m sure there will be more of that with more treatments. For now we’re all happy and comfy back in our own home.
Want to say thank you to all the wonderful people who came and cleaned our house, mowed our lawn, stocked our fridge, and the hundred other little things y’all have done to love on us! We appreciate you so much!
And an extra special thanks to Josh, Brandi and the Kellett boys for feeding and sheltering us for a whole month. We couldn’t have survived without you!
Thanks to all the prayer warriors out there. Keep praying for Judah. We’ve got a year left of his chemo treatment and there are sure to be some hard times.

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Port Surgery, Post Surgery, and Discharged! What a day!

Judah has been taken back to surgery for his port placement. He was pretty upset when they wheeled him off. Prayers for comfort for Judah and steady handed Drs!

Judah is out of surgery and everything went as planned. He now has his port in place for chemo.
Please pray he bounces back from anesthesia quickly and his recovery continues to make steady progress. We are also hoping to get discharged soon and hope the feeding tube comes out.

Also join us in prayer for a definite plan for his OT/PT/Speech. Right now we don’t know where we are going or how those appts will look. We also need a plan for chemo if we get to come back to Knoxville for his therapy. Pray for clear direction.

We are officially discharged from the hospital!!!
We will be coming back tomorrow for baseline testing and then Wednesday is our first Chemo treatment but after that we get to come home to Knoxville!
We have been working hard for a week to figure out where we could do Judah’s pt/ot/speech and after giving up on Knoxville, I woke this morning and felt the urge to call East Tennessee Children’s Rehabilitation Center and just tell them our story in hopes they would change their minds about speech (it was wait listed for 6 months). They listened and then said that our oncologist could call and talk to them and of they felt Judah’s case was immediate enough they would move him to the top of the list.
So at 10am this morning I told our Case Manager, who told our oncologist, who agreed Andrew some calls and then after hrs of back and forth we got the word that they had agreed to take him!
So now we get to come home and do pt/ot/speech and Chemo in Knoxville! We are so grateful that we will be home, surrounded by our community, friends, support system. Thank you for your prayers. Keep them up. We have a long road and it is really just beginning. God is directing our path and we are finding that though this isn’t the rd we would choose, our sweet Jesus will not abandon us and will continue to go before us and behind us.

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CT/Shunt/Therapy plans

For the last few days, they have had Judah’s Intra Cranial Pressure (ICP) drain clamped to see if he can naturally drain/absorb it. We all thought he was because his ICP’s were reading so low and he was doing so well. At 4 am they took Judah down for a CT to ck on swelling and drainage of his spinal fluid from the brain in hopes of taking the ICP drain out. However, they found that I stead of draining it was actually just forcing its way out of the surgery wound into the area between the skin and skull. So he wasn’t managing his fluid. His fluid had just found an easier way out of the brain.
So tomorrow morning, if all goes well scheduling wise, they will put in a permanent shunt that will drain fluid from the brain to his belly internally. The surgery should only take an 1-2hrs and is minimal in risk. The Dr said it shouldn’t set him back any but instead give him the freedom to move around more and dive into PT/OT for quicker recovery.
We were at first sad about the prospect of another surgery but agreed that we need to move past this drainage issue and onto the talking/walking/treating the rest of the tumor issue. This affords us that.
We would appreciate continued prayers for Judah, surgery, recovery, us, and just being separated as a family. We miss Judah and Camilla Kate together.

Judah is going to need very intensive physical/occupational/speech therapy to fully recover and the logistics of that are complicated. Most of the Drs here think he needs inpatient therapy for 3-5 weeks but there is no inpatient therapy center in all of Tennessee that takes kids his age, the closest is Atlanta. One of the Drs thinks he can work something out here at Vanderbilt to get Judah outpatient therapy but in an intensive way – say 3 or more hours a day 6 days a week.
Being able to do therapy here would be¬†much¬†better for us as a family so we’re asking for specific prayers for God to open doors and make the therapy choices very clear and easy.
Thanks for all the encouraging words and prayers!

The surgery to put the shunt in will be tomorrow morning at 7:30am. Should be about an hour and a half and he’ll be intubated again but the tube will come out when the surgery is over. The process used to route the shunt to his belly will be pretty painful for Judah when he wakes up and he’ll have a total of 5 or 6 incisions (including the ones he already has) and every incision is an infection risk. So please pray for a flawless surgery, minimal pain and no infections!

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