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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conquer the world

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.

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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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first chemo in the books

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!

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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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Judah’s surgery day: hr by hr

Below you will find a collection of updates and prayers from the day of Judah’s partial brain tumor resection:

They moved the time up a little, now at 9:30 CDT. While the surgeon’s part will only be about 5-6 hours, the prep and finish up will mean he’s gone from us for 7-8 hours.
We just got down to surgery holding. He says he’s so hungry. Then he told us what he wants us to order him when the nurse says he can eat. Bacon, strawberry yogurt, a banana, and a carton of milk. So sweet. He was so sad when we told him we couldn’t go with him into surgery. He said, I want you to be with me when they take the ball out. But our Sweet Jesus is going before us because he just fell asleep!
The nurses just came and wheeled him back to surgery. Surgery won’t actually start for an hr or so as they prep him. He stayed asleep for theist part, waking only when we kissed him and told him we loved him. Our God hears our prayers for peace and no fear for our little boy.
Started the surgery at 10:18am
Just got the call that they are opening his head now.
Just got an update. Vitals are good, working on the tumor. Everything is going fine.
Dr. Wellons just came out and told us he’s out of surgery! He said he did really well. They got most of the tumor in the 4 ventricle but were unable to get any of the tumor in/above he brain stem or spine. When they tried to get the tumor that was growing from the brain stem the 9 nerve reacted (swallowing) and the 12 nerve reacted (tongue). Shortly after, Judah’s heart rate jumped. That was their sign to stop.
Dr. Wellons said his goal was to ‘debulk’ the tumor, get the tissue to pathology, create paths for the spinal fluid, and cause minimal disruption to surrounding tissue. He said he met all those goals barring the part of the tumor growing out of the brain stem.
We are elated that this part of the journey is over and praising God for his steadfast love and faithfulness. He has shorn us up from the beginning and will continue to do so.
Please continue to pray:
That there are no residual side effects from the surgery
That when they wake him in a little bit, he will be able to move all of himself
That he will be able to control his breathing, swallowing, and speaking tomorrow
Thank you all!
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