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.
Tomorrow morning at 8:00am cst Judah will be receiving his first follow-up MRI scan to check the status of his tumor. Please join us in praying for:
-Easy ck in
-Peace for Judah and us
-No problems with anesthesia intubation
-Scan shows tumor is smaller or at least the same size
-Meeting with oncologist is comforting, informative, and productive
In other news, Judah has been doing wonderful this last week. His balance has her better and he has had little to no nausea. He is actually eating better. His emotions have been wonky but better than before. Thank you for praying for him, us. We see and feel it.
Brain has expanded to fill cavity in 4th vent (great news) and tumor appears to be the same size (No bigger for sure!) Dr said he is very happy with the scans and wants to see him back in 3 months. He thinks they will be able to see more clearly if it has shrunk in that scan. Great news! Jesus is so good to us!
Thank you for all your prayers!
~The Thacker Family
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!
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
Today was the first Sunday since the surgery that both our kids went to their classes without any trouble and stayed the whole service!
I had been actually dreading another attempt and had told Matthew I didn’t think we should even try for Sundays. But he was playing in our churches new venue (Amped Two Rivers Church) and I really wanted to go to at least the worship part. So I got up with the kiddos and prayed for God to make things smooth for us.
Judah woke, showered, took all his medicine and ate breakfast without a fight…which doesn’t ever happen. Cricket was her usual jolly self but I was worried about the time cause the 10:40 service is nap time. However, as God had shown up for me with Judah’s morning, He did the same for Camilla Kate.
When we got in the car I explained to Judah that we were gonna go to the big service and he started crying. I asked him what was wrong and he said, but I don’t want to go to church I want to go to my class! I was shocked as the last 2 times I tried to take him were awful. He just got overwhelmed with the noise and number of kids.
But God heard my prayer this morning. He made my morning smooth. Both my kiddos behaved and were great in class and I got to go to worship AND listen to the sermon.
Thank you God for caring about me and the longings of my heart.
Please continue to pray for Judah as he goes back to his full Chemo regiment next week. Pray for no nausea, neuropathy, or balance issues. His balance is our biggest concern right now as he keeps falling down. He fell into a bookcase over Labor Day weekend and then last week he tripped on nothing and busted his lip wide open. Little guy is having a hard time. Thankfully the black eye, bruised cheek and forehead are fading and his lip is healing faster than I thought possible. Other than the falls, it’s been a good week. Thank you for praying and please continue to do so.
Resting between His shoulders-
The Thacker Family
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.
We packed up and left Nashville this morning about 10:30 and now we’re home! Judah’s curled up on the couch playing with the iPad and seems to be doing great. He hasn’t experienced any nausea yet from the chemo but I’m sure there will be more of that with more treatments. For now we’re all happy and comfy back in our own home.
Want to say thank you to all the wonderful people who came and cleaned our house, mowed our lawn, stocked our fridge, and the hundred other little things y’all have done to love on us! We appreciate you so much!
And an extra special thanks to Josh, Brandi and the Kellett boys for feeding and sheltering us for a whole month. We couldn’t have survived without you!
Thanks to all the prayer warriors out there. Keep praying for Judah. We’ve got a year left of his chemo treatment and there are sure to be some hard times.
Judah’s first chemo is this morning. Please pray that is all goes smoothly, that he has little side effects. Pray that he isn’t scared.
He will have blood draws at 7:45 then meeting with the dr at 8:00 then chemo from 9-11.
Thanks for the prayer support! Love you all.
Judah got a little sick in the middle of the treatment but was ok by the end. They gave him zofran for nausea and we will continue that every 8hrs for the next 48 hrs. Thankfully, his immune system will not be compromised until next wks treatment but we are having to learn a lot about germs, infection, and how to protect our little family. If one of us gets sick after next week, we will have to go stay somewhere else. Gotta keep the germs away as much as possible. Investing in hand sanitizer and Clorox wipes, haha!
We got to go to our home away from home as a family last night for the first time in almost a month! Judah got to take a real bath for the first time in over a month. We had dinner together, watched a movie together, read stories together and then went to bed! It was surreal and lovely and we thanked our precious Jesus for such a sweet return.
This morning we are back at Vandy for Judah’s baseline testing. Basically, they are checking kidney function, platelets/red/white blood cell counts, and liver functions. He will also have his hearing checked as hearing loss is a possible side effect of his chemo.
He wasn’t thrilled to be back here and when the nurses accessed his port, drew blood and injected the medicine for testing he was even less thrilled! It was pretty awful because the medicine had to be injected into a vein, not the port, but most of his easy veins were blown from previous ivs. It took them a good while but after they got it, it was smooth sailing.
Now we are just waiting for the 2hr mark to go get ckd again. Should be done around 1 today.