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

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

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

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!

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.

Third chemo all done

We got to ETCH at 9:30am and I realized, to my dismay, that I forgot to put Judah’s EMLA cream on. So though the nurses were on top of it, ready to access him and start his fluids, we had to wait 30 mins for the cram to numb his port  so it wouldn’t hurt. I now have a reminder on my phone?
Once the cream did it’s magic, his awesome nurse accessed him, drew labs, and started his fluids. I got out Judah’s school work but before we could get started Child Life came by to tell us some Tennessee Athletes were in the game room doing Beads of Courage bracelets, Judah jumped at the chance to not do his work, and he loves crafts!
The athletes were so nice and Judah loved having them help him make a bracelet for himself and his sister!
Thank you Tennessee Athletics for organizing a fun distraction for the kids!
When he finished, we headed back to his room where Judah proceeded to eat 4 bags of goldfish and 2 bags of Cheetos while waiting for his labs to come back. He loves him so salty cracker snacks!
Around 11 his labs came back great and the timing couldn’t have been more perfect because his fluids had just finished too!
Dr Spiller order his chemo and Judah and I started his school work, trying to finish his math and spelling…which he was not happy about. It took quite a while and a FaceTime call from Daddy to get him to do it. But that seemed to work!
Judah’s first chemo just finished at 12:30. We’ll wait for the flush and then hopefully start the next one!
Now he’s done with his school work though, we can get down to real business, battling each other in Pokken Tournament DX! This time I’m the one thankful for the distraction cause I have lots of work I should be doing…?
So far he hasn’t had any side effects. Keep the prayers coming because they are helping!
We made great time once they started the chemo and we are headed home at 2:30! Judah did great and was a warrior, as usual?
He is feeling mean though. I would be too though, so I get it! But it’s hard when he being so very hateful.

We will continue to ask Jesus to comfort our boy. Continue to pray that the Holy Spirit will help us to be slow to anger and abounding in love. Like He is!

Wear Your Love!

Wear Your Love: #TEAMJUDAH

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

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

Order Info

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

Youth shirts: $15, white, soft Next Level

Car Magnets: $3 each, 4 inches

second chemo here we go

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

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

1st clinic visit and learning to deal with feelings

Judah and I went to ETCH this morning for his 1st off-week clinic check. It was an easy appt and with the Emla Cream, Judah didn’t even feel it when the nurse accessed his port! Oncology nurses are really good at sticks and Judah told her so! “That was way better than the other night that the ER. You are really good at that.”
His labs looked good so he will be having his 2nd Chemo next Thursday.
As we were waiting for his labs to come back, I thought about how amazing the nurses, Drs, and clinic is there at ETCH. Judah said, as we entered our patient room, “wow this room is very relaxing! I like it”. The nurse that accessed him was friendly and sweet. She joked with him that she could help with whatever he needed as long as it wasn’t his Math homework, haha. Judah’s oncologist Dr. Spiller, is just so good at what she does and really made an effort to connect with Judah and with me. We felt cared about and heard and loved. And when your kid is starting a year long chemo, those are the feelings you want to have! I am so very grateful to have ETCH Hem/Onc taking care of Judah!

I’m guessing all the the positivity we had today was making up for all the negativity we had yesterday. Judah was in a foul mood yesterday. It didn’t start off great because I am not the best at morning time anythings… I woke up, made breakfast, packed lunches, got dressed and felt like I was crushing it. And then Judah says, “Mom, we are supposed to be at school in 2 minutes. We are gonna be really late.” UGH! I’m telling you guys, I never remember just how much Matthew helps out in the mornings until he isn’t here. I just do not function well before 2 cups of coffee. So we were late. Like 15 minutes late. And Judah HATES being late. He was sitting in the back seat, saying, “I have a math test today and it usually starts right after devotion. If I miss the beginning of the math test, I won’t be able to finish it on time.” I do my best to reassure him, telling him that the joy of part-time homeschooling is that he can finish his test anytime. I tell him it’s not a big deal. But he isn’t having it.

We get to school, I walk them into class and remind Judah’s teacher that I will be back in an hr to take him to cancer counseling. But when I got to school to get him, he was on the verge of tears. I asked him what was wrong. Can you guess?? “I didn’t finish my math test Momma!” He was full blown crying now. And I was so thankful we were on the way to counseling. I knew Judah needed time with Dr. Reno and that she was really good at getting him to talk about whatever was eating him up inside. But 30 minutes in, his counselor ended the session at his request. He wouldn’t talk to her. He wouldn’t look at her. He cried/tried not to cry and shrugged his shoulders with every attempt to communicate. Finally she asked him if he wanted to end early and go back to school and he said yes.

After I spoke to his counselor for a few minutes about some tools Matthew and I can use to talk about Judah’s cancer, we left. He was very emotional on the way to the car and even yelled at me. “I asked you not to talk about my cancer so much and you said you wouldn’t, but that’s all you talk about anymore!” I was at this point that I realized my sweet Judah was not dealing with his cancer diagnosis well at all. I tried to explain to him that when I said that, it was when his tumor wasn’t growing. Now that it is growing again, I had to talk about it some. He just looked at me with frustration. He didn’t speak to me again until we were all the way through the Chick-Fil-A drive-thru line — at 11:30. If you’ve ever been there at lunch time, you know he was silent for like 20 minutes! When he finally talked to me again, he said, “will you please take me to school now?”

Guys, Judah and I have been doing cancer counseling and lunch dates every 2 wks for almost 4 yrs and it has always been a joy. But I think, maybe, that time is over for now. Cancer at 4-5 yrs old was hard. Watching Judah go through all that and him not be able to understand why was excruciating. I think cancer at 9-10 is going to be a whole lot harder though. He knows what’s going on. He gets it enough to be angry and dread every conversation. He is struggling. He is hurting. Let me tell you, not being able to help him is tearing me apart.

A friend sent me a verse last night, Isaiah 40:28-29

28 Have you not known? Have you not heard?
The Lord is the everlasting God,
the Creator of the ends of the earth.
He does not faint or grow weary;
his understanding is unsearchable.
29 He gives power to the faint,
and to him who has no might he increases strength.

I have no power. No strength. No understanding. But Jesus does. I choose to trust that He, whose understanding in unsearchable, will continue to give me the right words to say to Judah. Words to lift him up and restore his strength.

going home soon!

Judah’s fever has come down to 99 after Tylenol, fluids and 1 round of antibiotics.

All the tests and blood look negative/normal. Blood culture takes longer but they’ll call with any updates.

They are going to give him another round of antibiotics and then we get to go home.
If he gets another fever in the next 24hrs I have to bring him back.
We are exhausted. We both cannot wait to go home and sleep…thanks for the prayers.