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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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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chemo side effects and neuropathy stinks

Hello all!
We’ve been going hard for the last 2 wks and I’ve not been updating very well. I’m sorry for that.
The last 2 wks Judah has been receiving a partial chemo treatment. It is totally normal and part of this first 10 wk run. He had 4 wks of both drugs and these last 2 wks have been only 1 drug, vinchristine. This week he will go back to both drugs for 4 more wks.
Honestly, these 2 wks on vinchristine have felt like a break from chemo because the nausea, vomiting, and irritability have been pretty much absent (barring a few instances). The only thing we really notice was his balance was really off. I mean REALLy off. He has fallen a lot so he is covered from head to toe in bruises.
So today at PT Julie did her normal feet/leg stretching and did a test to see if he could feel her touching toes/arch/heels and he could on some and couldn’t on some. In watching him walk, climb, etc she said she thinks it could be neuropathy/foot drop. It could also be that his muscles are still redeveloping. Or it could be that where his tumor is located, in the brainstem, it could be causing balance issues too. So we aren’t sure.
One of the most common side effects of vinchristine is neuropathy. We didn’t put 2 and 2 together that the off balance could be neuropathy. We thought neuropathy was painful…we are new to this. The one good thing is this mess is that he isn’t experiencing any pain with the neuropathy!
Before we started chemo, Dr. Espenshade said that if the neuropathy got bad and foot drop was a more common side effect we would have to switch regiments. We don’t know what that looks like. We don’t know of this foot drop is the beginning of a “more common” or just a side effect. We don’t know if its something to be concerned about or just part of the chemo deal. So we will talk to oncology and PT and watch and see what the next step is to get him in a better, safer walking place while killing this cancer!

http://youtu.be/pTA3VJzX1uE

http://youtu.be/HyzE0-TdInc

Please be in prayer for:
-Clear direction with chemo regiment and side effects
-Explanation of neuropathy/foot drop and whether it will be permanent
-If permanent, what does that look like for Judah
-Continued no pain with neuropathy and little to no side effects as we go back to both drugs this wk
-Better balance for Judah in everyday activities like walking, running, jumping, climbing stairs, and riding Stridor bike
-MRI (9/18) shows no growth and/or shrinkage of the tumor

Thank you all!
Resting between His shoulders-
The Thacker Family

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No news…is not good for me and chemo day

Last night was thankfully uneventful. He slept great and his breathing was regular. We go to chemo this morning and we will see what Dr Spiller says. This may be related to his mental coordination that his neuro surgeon told us about.
If I didn’t explain it earlier, it’s where his brain isn’t capable of managing/controlling 2 things at once (ie: managing anger and breathing normally). So when he gets overly angry, his brain can’t both control his mood/physical lashing out and tell him to keep breathing, so he passes out. This is not supposed to be permanent. The surgeon said that any of the symptoms he is experiencing can possibly be blamed on his surgery/tumor and we won’t know what until he is at least 6 months post surgery.
We obviously would rather this to be a symptom of surgery and are praying that the passing out was the mental coordination and not the tumor growing or shunt malfunction.
Thank you for the kind words and prayers.

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Judah stops breathing and I almost have a heart attack

Judah just stopped breathing and passed out. Was out for about 30secs before he came too. Have calls into neuro surgeon and oncology. Please pray!

Well we talked to the Hem/Onc nurse and she said she would let our oncologist and neuro surgeon know and that they would probably call us to talk about it. However since his vitals were normal and his ox sats were good, they didn’t think it was emergent.
We haven’t heard from either dr yet so I’m guessing we won’t hear anything tonight. Tomorrow Judah has chemo at 9:30 so I will talk with his oncologist here and she what she thinks. Last week when his balance was off, she said if he was still off she would send us for a ct scan so we may do that tomorrow to make sure the shunt is working properly.
I have ckd his pulse ox all day and since recovering from passing out it has stayed between 92-96 so that is good. We will ck it night too.
Please be in prayer for both his breathing and overall brain safety.

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chemo side effects make keeping a full tummy hard

Well we had made it 4 wks without any day of side effects but today he came home tired and then before bed threw up. It only lasted about 5 minutes but in throw up time that’s like an hr! He recovered fast and is now eating saltines and drinking water. Pray for a calm tummy and restful sleep.

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second chemo and nausea sucks

Yesterday was Judah’s 2nd chemo. He got sick, like before, about 20 minutes in and stayed sick for around 30 minutes. He didn’t throw up though so that’s a plus. He was pretty worn out after.
Today he had his PT/OT evaluations. He got scared at first, thinking it was a “hospital” but soon had a blast playing with his new buddies Julie and Katie. He wasn’t shy at all and they got to really see his strengths and weaknesses. Like Ashley, his Speech Therapist, they agree he needs breath support and torso strengthening but he also needs fine and gross motor skills. So he will have speech 1 day a week, pt and ot will both be 2 days a week. Thankfully they were able to avoid Wednesdays and Thursdays so he will have chemo day and day after to just rest.
Next week will be very busy as he will have his first pt Monday then we head straight to Nashville for his neuro ck where they will also remove his stitches. Then his first ot is Tuesday evening. Wednesday is chemo and Friday is ot/pt again. Pray for strength and endurance for the crazy week, a calm and peaceful spirit as we go back to Vanderbilt (as Judah seems to have anxiety about hospitals now) and patience for both Judah and me as we get more accustomed to our new normal.

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first chemo side effects…already

This morning at breakfast Judah was holding his jaws while he chewed. We asked him what was wrong and he said his mouth hurt. We asked him where it hurt and held the sides of his face. His jaws.
The oncologist had told us that one of the side effects of his chemo is neuropathy in jaws, fingers/hands, and toes/feet.
Please pray specifically for this to go away and stay away. Jaw pain/neuropathy on top of nausea will make him not want to eat no matter what we give him. If his calories drop we will have to go back to a feeding tube.

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