When it rains it pours (2)

Last Tuesday was a busy day. Judah and I were still in Kingsport helping Cara. She had a follow-up appointment with her surgeon in Knoxville. We all piled into Cara’s van (Cara and her 3 kids, Judah and me) and drove to my house where Mumzy (our Mom) was waiting to take care of all the kiddos while we were at the Dr. We made great time and dropped the kids in time to get lunch before hand.

Cara’s appointment went great and the Dr said everything looked good. It was quick and easy. We swung by the house and got Cara’s kids, leaving Judah at home with Matthew so he could go to school Wednesday, and got on the road to go back to Kingsport.

Everything went great Tuesday night–in Kingsport. I got the boys ready for bed, Billy read them a story and then we put them to bed. Cara, Billy and I got to hang out for a bit and then went to bed. The next morning, Matthew texted me during my quiet time to see if “I had a second to talk”. This is never a good sign. I called. Judah had spiked a fever last night and after careful thought and testing out of a hypothesis, he decided not to take him to the ER. Judah is fine. His fever and headache behaved the way they always had in the past. The protocol is to take Judah to the ER for a fever over 100.3 because of the port. We knew it wasn’t something like a blood infection, but as his Drs have said, there is no way to KNOW from home. Taking Judah to the ER every week in the middle of the night is not feasible. We need a different solution.

I got home Wednesday in time for dinner and enjoyed time with my kiddos. I was really glad to be home. The rest of the week went on like usual. Then, Saturday night at 3AM, Judah stumbles into our room. His head is killing him and he is running a fever–again. I got up with him, took him downstairs, took his temperature and heart rate, and tried to figure out what to do. Fever was 102.5, heart rate was between 145-155. This was obviously a ‘take him to the ER’ thing. And yet, I waited. I gave him a pain med that does NOT help with fever, to help with his headache and arm/leg pain and decided to wait 30 minutes to see how he was doing. That 30 minutes crept by and when it was finally time to reck him, his fever and heart rate were no better so I got him in the car.

At the ER they took him temperature and it had come down to 101.7 but that is still too high for Judah to have. They accessed his port, took a blood culture and cbc and started a round of antibiotics. After 1.5 hrs, his cbc came back relatively normal for a kid on chemo and he was discharged with orders to talk to our Oncologist Thursday. We were home by 6:30AM and though I was exhausted, Judah had gotten his second wind and the other 2 kiddos were awake. As you can imagine Sunday was a LONG day. Judah was not particularly nice but would you bet if you’d gotten up at 3AM?

Our prayer is that someone finds out what’s causing he headaches and fever so we can stop them. And also, selfishly, that Matthew and I can find ways to talk to Judah, patiently and with love, when he is spewing meanness at everyone around him.

Chemo is Thursday.

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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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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.

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103.4 fever means ER…ugh

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.

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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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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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