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.
Judah woke at 2AM with a headache and a 103.4 fever. Matthew is in Atlanta. I knew we had to go to the ER but also knew I couldn’t take all 3 kids with me. I called Matthew and he said he’d get Emilie to come over to stay with the littles. I called the oncology on-call Dr who said you gotta take him to the ER. Which I knew but was hoping to hear differently. I got Judah dressed and put him in the car.
Once at the ER, we were taken right back. Perks of being on Chemo is you don’t ever wait on the ER ?. To dangerous for his immune system.
They’ve now accessed his port, drawn blood, done a strep and flu test. Now we are waiting.
Prayers friends. Matthew is frantic that he is not here. I’m not so hot myself and I am here. I thought we had a lot longer before all this started.
Y’all-this gift card tree was just delivered from Judah’s school, Oak Grove Cooperative! They are the most loving, “hands and feet of Jesus” organization/school we have ever been a part of. They don’t just pray and cry with us (though they have done that too!) They are showing ACTIVE love and support how they can.
Not only did they give us the gift card tree for clinic days and “Judah won’t eat anything but Chick-fil-A” days, but they also are doing a matching fundraiser!
This is not your typical school. This school is run by people who LOVE Jesus and take care of their community. They help us parents homeschool well and, on school days, they teach our kids with both progress and pace in mind. Choosing to send Judah there 2 yrs ago was the best educational decision we’ve ever made! We will be forever grateful to them for allowing Judah (and now Camilla Kate) to love and feel loved by their school.
Thank you Oak Grove Cooperative!
The Sunday after we found out Judah’s tumor was growing again, we went to church. There were many who didn’t understand WHY we would want to go, knowing we would have to answer the questions:
How are you guys?
How’s Judah?
I knew those questions would be hard and that I couldn’t even really answer them and that our people loved us and would hold us close. But I also knew I needed to worship.
Worship music is my path to Jesus’ feet. Without it church is very difficult for me. And Matthew knows that about me. So we went. The music was on point and I was singing and communing the way I was longing to. And then the band played, what was a new song to me, Reckless Love by Cory Asbury.
Guys, let me just tell you, my body reacted before I knew in my heart what was happening. Viscerally. And I was overcome. As the words washed over me, Matthew holding me up, I gave up the pretense that I could do ANYTHING without Jesus. And just in thinking that sentence, ASSURANCE.
Don’t misunderstand me. There was no Godly promise that Judah would be ok. Or that Matthew and I would be the rock Judah needed. The assurance was that Jesus knows my sorrow, my fears, my anger. And He loves me. Assurance that He knows Judah’s fears, his anger. And He loves Judah. In fact, Jesus loves Judah more than I do. And that love leaves the ninety-nine for the one. It gives new mercies every morning. It is free and undeserved. It is faithful and endures forever.
And that is the love that will hold me- and Matthew, Judah, Camilla Kate, Emmett and everyone of the sheep of His pasture. That is His promise. No matter what.
—
Reckless Love (chorus/bridge):
Oh, the overwhelming, never-ending, reckless love of God.
Oh, it chases me down
Fights til I’m found
Leaves the ninety-nine
I couldn’t earn it and I don’t deserve it
Still You give yourself away.
Oh, the overwhelming, never-ending, reckless love of God
There’s no shadow You won’t light up
Mountain You won’t climb up
Comin’ after me
There’s no wall You won’t kick down
Lie you won’t tear down
Comin’ after me
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 Pokémons!”
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 Pokémons 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 Pokémon 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 Pokémoned that one!”
Hello friends-
After Judah’s first Chemo yesterday we weren’t sure how he would feel or even if he would want to go to school. We were praying he would want to and be able to and that is exactly what happened.
He slept very well and woke up ready to get back to school and see his friends!
I was noticably nervous walking him into school, knowing many would want to hear all about the last 3 wks, and not being sure if I was emotionally prepared for it. But as I had been praying that Judah’s friends would make him feel normal (and they did!), God blessed me with the same. People hugged me and told me they were reading my posts here and that they would be praying for us. What a lovely feeling to KNOW my community is around me, for my family, but sweetly knowing that I may not be ready.
Thank you to everyone who hugged me, who asked how they could help, who listened to brief stories and didn’t prod. Thank you for your prayers and encouragement.
There is a heaviness that sits over a chemo clinic. I had forgotten that tight chested, woozy-headed, rapid-heart beat feeling that comes with seeing, not only your own child but a room full of really sick kids, doing one of the hardest things we can do as humans — fighting for the right to live. That feeling is pretty wretched. Seeing and being helpless.
Judah was a warrior today. It began with labs at 9am. After everything came back normal, we picked a spot and settled in for a long morning. He ate and drank everything we could throw at him and ask for more! He was very tired but refused to sleep…he’s very stubborn? The only real frustratation came when his feet and hands began cramping. But with flexing, moving, and water it passed.
After 3 hrs of chemo, he got flushed and deaccessed and we were free!
He’s still fighting sleep but I think the car ride home will over power him ?
We will do labs etc next week and then chemo in 2 wks. For now, we ask for prayers that he can go to school, enjoy it, get the work done, and feel ‘normal’ with his friends. Thanks all!
As we sit here, in the surgery waiting area at Vanderbilt, I cannot help but think of the last time we were here. Waiting again, but that time it was to see our sweet Judah’s face after his brain tumor resection surgery. We didn’t want to return to this place, discover our son’s tumor was growing, and face the horrible events from his 1st surgery. We prayed hard for no growth and then if it had to grow, please don’t make Judah have to go through brain surgery again. Please. Please don’t let him have to learn to walk and talk again. And I am overcome with gratitude to my God that we are not going through that again!
Instead, perhaps as a small mercy, we are sitting, surrounded by excited and scared little faces, waiting for a much smaller surgery so we can begin this fight again with chemotherapy. John Piper says, it’s ‘a grace given in the circle of a grace denied’.
And so we wait. Thankful for the grace given
.
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’ 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.