Sleep, chemo side effects, and Jesus

I am a heavy sleeper. I love sleep and people who know me will tell you that I really do need 9-10 hrs of sleep a night to be my joyful self. So I go to bed early. Like at 9pm. I know! But I have learned that if I want to get all the sleeps, I have to forgo the TV and all that stuff and get into bed. I have even gone back to reading ‘dead tree’ books, as my husband affectionately calls them, to minimize the chances of falling into the endlessness of internet only to find that I’ve scrolled my way to midnight and kick myself because what had I actually read/seen that as worth losing precious shut eye?

All that to say, once I’m asleep, there isn’t much that wakes me. One of my children crying is one thing I ALWAYS hear no matter how asleep I am (fellow mommas nodding, right?) Another is the Holy Spirit. And that’s about it. Last night I was out cold, and had been for a few hrs, when I woke up for no apparent reason. When I say woke up, I mean wide awake! I looked at the time, after midnight, and then looked around the room. Nothing. Looked out into the hall and saw the bathroom light was on. And I said a quick thank you prayer because I knew then that one of my kids was sick. It wasn’t the fact that the light was on, cause my kids get up to pee in the middle of the night too. It was that I had been asleep and woke up for no apparent reason to find the bathroom light on. I knew this was a gentle nudging from Jesus.

I walked into the bathroom and found Judah a mess. He looked awful and told me he felt equally so. I asked him what was wrong and he said “my belly really hurt like I needed to poop but I was too late. And I feel like I’m gonna throw up”.  I told him is was totally fine and I would clean it all up. And I looked in his face and saw how embarrassed he was. So I got down next to him and said, “Hey Bug. I’m sorry this happened. Don’t feel bad about it ok? It’s so easy to fix this mess and it is 100% not your fault. This is the chemo rearing it’s ugly head.”

I prayed over him and for him, got him cleaned up and back in bed, and then set to cleaning up the hall and bathroom. While I cleaned I felt a crushing sadness. A feeling of helplessness. Weakness. How do we get Judah through this? What will it even look like to get him through this? And then there was the black hole…the what if’s taking over. I wish I could tell you I prayed or got my bible and read or even sang a worship song to myself. But I did none of those things. I scrubbed the floors and bathroom and cleaned myself up and crawled back in bed. I chose to ignore my feelings in hopes that they would go away if I just went to sleep. I slept horribly. I woke the next morning ‘tight’ inside. I knew I needed Jesus but I couldn’t bring myself to talk to Him. So Jesus crossed lines to get to me.

My phone pinged. A simple text message popped up on my phone. “I’m praying for you right now.” That’s all it said. But it’s all it needed to say. Cause in that moment I felt God’s love for me. And that made it possible for the walls to come down and me to see Jesus.

Sometimes the Holy Spirit wakes us up in the middle of the night. Sometimes He urges us to send a note, a text, to make a call. Sometimes He brings a friend to mind. My advice is to heed that prompting. Jesus may be using you to pull someone out of the the back hole of despair.

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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 (1)

This week has not been a great one for Judah though at the start of it, it looked like it would be great!

On Sunday, he and I went to Kingsport to help my younger sister after she had rotator cuff surgery. Judah and Will love each other and play the same way; that kind of sit with action figures, cars, whatever imaginary play. They had both been looking forward to it.

We got there around the kiddos bedtime so there wasn’t time for any activity. They just went straight to bed. Cara and I stayed up for a bit to talk and the retired to bed too. Around 11:30 Cara comes downstairs and says “Judah is saying his foot is really hurting him.” I figured it was cramping and told her to send him down to me, apologizing that she had to get up with him. A few minutes later, here she comes, CARRYING, my 9 yr old down stairs. Reminder: she had rotator cuff surgery 10 days ago. Isaid, “What are you doing?? Put him down! He can walk.” Little did I know, he couldn’t walk. She put him on the bed and I could see in his face that he was in excruciating pain. His foot was not swollen or bruised but touching anywhere on the top was more than he could take. Even touching the arch and pressing up was too much.

I started to rack my brain. He can’t have Motrin because it things blood and he is taking chemo that things blood vessels. He can’t have Tylenol because it masks fever and he has a port so if it got infected, he would get real sick real fast. 

I started to cry. I was, again, away from Matthew and Judah was hurting and I didn’t know what to do. So I laid my hands on Judah and prayed over him. I prayed to Jehovah Rapha to heal Judah’s foot. I asked him to relieve Judah’s pain so he could sleep. Judah even prayed for himself. Nothing changed. I don’t know what I was expecting but I will say I started to feel an anger I haven’t felt in a long time. An anger about the injustice my boy has lived through thus far.

After 30 minutes after trying to calm him, I called Matthew who I said, “oh yeah. He feel today and I thought to myself, he probably just broke his foot. You probably need to take him to the ER for an x-ray.

WHAT?!?

I wasn’t calm. 

Thankfully Cara brought ice and, after taking his temp and deciding it was worth the risk, I gave him Tylenol. He was able to sleep soon after. 

The next day, he wouldn’t put any pressure on it. In fact if he fogort and accidentally put pressure on it, he would cry out in pain. We kept ice on it but it didn’t seem to be improving. I knew we were going home Tuesday so I decided to wait. 

When he went down for a nap, I went out into Cara’s yard and did a prayer walk. By prayer walk I mean, I wondered around talking to God — voicing my anger and frustration that Judah keeps getting sick and hurt. That cancer wasn’t enough. My mind was fixated on a particular ‘why’. Why does he have to fall and possibly break his foot when he is already fighting cancer? Why, when he never has energy or desire to do much of anything active, does he have to get hurt playing outside with his sister? I felt so abandoned. So alone. I prayed for Jesus to show me a bit of His love for me. For Judah. 

I listen to praise and worship music all the time. Most of those songs talk about God’s faithfulness. His ever presence. 

·Before I call, before I ever cry

·You answer me from where the thunder hides

·I can’t outrun, this heart I’m tethered to

·With every step, I collide with you.

~Fierce, Jesus Culture

It’s weird. I didn’t feel abandoned because of Judah’s cancer. I felt abandoned because of all the other stuff. The anger he has, the fevers, the not eating, the cramps, the broken foot. Where my heart is, I felt empty. Did I do something? I didn’t know what else to say. I was sad and angry. I needed Jesus. My strength was but a breeze compared to His hurricane. My peace was turmoil. It was all a mess without Jesus.  

After a couple of hrs, I went to ck on Judah and he was awake. I asked him how he felt. How his foot was. He said, “it feels better, I think. I can move it around!” And he wiggled his toes. And I cried! “Thank you Jesus for showing us Your love!” And Judah said, “yes!”

God is good. And He loves us with an undying, undeserved love. It is easy to have nothing but apathy for God when things go wrong while giving people all the glory when things go right. We have to learn not to divorce those things. God is good and bad things happen. God uses His people to love His people. (~Cara Mcmillin)

The rest of the week in the next post.

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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.

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being loved feels really good

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!

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Reckless Love

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

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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 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!”

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the head/heart divide

My God is good. And Generous. He is merciful and kind. He washes me with grace again and again. Yet I struggle to have faith like a child.
It is confusing to me the heart/head divide. That in my heart I know my God will surround me and lift me up. That He will not abandoned me in my time of need. That he rescues those who love Him and call on Him. But my head, the stubborn and divisive thing it is, reminds me that God being good and bad things happening aren’t mutually exclusive. My head, which can reason me into a fear spiral, says God will do whatever He can to bring his people to himself. That His will often doesn’t match the longings of my heart.
This is when the anxiety begins to eat away at my faith.
I turn to His word, which has never failed me. I read and I pray and sing worship and I cling to hope. And remember that He is good and He loves me with a ridiculously compassionate love.
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Port placement-better than brain surgery

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

.

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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’ 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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