Tag: therapy

By the skin of our teeth

Posted on by Wendi Thacker

Happy New Year — late. It’s January 29th and the Thacker Family is functioning. And that is a major win!

It is very easy for me to get bogged down in the day to day medicine alarm reminders, g-tube feeds, sibling fights, homeschool, blood draws, middle of the night cries of pain, toddler viruses, late night work emergencies, dirty laundry, and snotty nosed, chest colds. We got our first virus of the fall right before Thanksgiving and have not been consistently healthy for more than 10 days since. Between Judah’s brain cancer, chemo, pneumonia, and all the GI bugs, colds, and sinus infections we’ve all fought, I’m honestly surprised we made it through the craziness of the holiday season in tact! But we did make it, if by the skin of our teeth.

 

The holidays are always hectic. And I had been ramping myself for them. Building walls to try to protect my tender heart. Because even if you took away all the sickness we had to fight through, we were already looking at a hell of a emotionally trying season. The weight and very real possibility that this would be our last Thanksgiving and Christmas with Judah.

So we made and ate delicious food together. We hiked, worked puzzles, and talked. We played cards, video games, and listened to music. We laughed and cried. We carved out space and memories. I was often caught off guard by how beautifully our families have learned to live in the awkward space that is both completely joyful and completely broken.

 

In Kaitlin Curtice’s book Glory Happening, she says:

We hold hope and despair, one in each area, and we cradle them close to our chest, because they both have something important to say to every moment.

This sentence struck a chord. A great vibrating, knock me off balance, shake some long time stuck thing loose, chord. Because it is truth. Our truth. Hope and despair. The trick, since Judah’s terminal diasgnosis, is to find the sweet spot where they become 2 equal parts of the whole. And it is a careful balance that I fail at more often than not.

I find myself sniping at my children for being children. My husband has become my favorite person to throw senseless jabs at. But he sees me and refuses to let me ‘be’ someone he knows me not to be. With his gentle coaxing and playful poking the darkness that had covered my eyes begins to recede. And suddenly, the problem snaps into focus. Despair has tipped the scales.

Judah has been off chemo for almost a month. He has been on the new MEK inhibitor for just short of 3 weeks. But He isn’t stronger like we’d hoped. He doesn’t have much more energy. His balance is still bad. He cries easily. His body and heart bear the accumulated scars of a life no child should have to live. And he has a host of new side effects from the MEK inhibitor. The gift of hope comes wrapped in the suffocating fog of despair.

Despair exists because. Because Judah’s pain exists. Because he wants to be himself again. Because Camilla Kate and Emmett want their brother to be the brother they remember. Because Matthew and I don’t get to sleep anymore. Because our family is isolated and lonely. Because we never wanted cancer to define Judah or us but it has. Because no matter how hard our friends and family try, they can’t MAKE their kids truly understand that Judah isn’t ‘their’ Judah anymore. They can’t make their kids want to be with Judah. To play with him where and how he can. To be thoughful and kind in word and deed. Because when Judah loses his balance walking on the playground with his friends, it scares them. They are still little kids and they don’t know how, and shouldn’t have to know how, to stay. So a moment of physical weakness turns into extreme embarrassment and despair for Judah. And all the work it took for us to get him to go, to try, to keep working at it goes out the window. They are kids. And this is too hard. For all of us.

How, with all of that, can we possibly bring things back into balance? To tell you the truth, I have no earthly idea. I know that we have to train our eyes to see joy. And we have to be grateful where we can. So in an attempt to rectify the state of my heart, a simple exercise in gratitude.

 

 

We had a beautiful day yesterday and Judah ventured out into it. I got to hug my Mom yesterday. My nephew thought about Judah and how to get him moving in a fun way and told me about it and it worked. Camilla Kate and Emmet have been playing with superhero toys everyday, for hours, instead of watching tv. The reminder alarms on my phone are actually reminding me to do the thing I set the alarm for in the first place. Matthew still reaches for my hand when we are close. One of my sisters has started reading my kids a bedtime story via FaceTime 1x a week and it is an utterly joyful experience. I got a new gas stove. Judah is coming off a bunch of medicines he’s been on for almost a year. My Sonos speakers are magnificent. The snuggles Emmett is giving because he is sick are oh so lovely. Camilla Kate loves art and is forever drawing, painting, and writing cute notes. Classical music played with banjo (Béla Fleck) and mandolin (Chris Thile) is all the things. I adore all of 4 of my sisters and they are my best friends. I got to go walking with a friend recently and it was nourishment to my soul. Matthew is writing music and woodworking again and the products are crazy good. MEK inhibitor protocol has started and Judah’s St. Jude team of Dr’s and Nurse’s are beyond astounding at caring for him and us. Mimi’s (Matthew’s mom) cancer isn’t as bad as we initially thought and she is beginning to get her energy back. It’s almost Spring!

I cried while typing the majority of this blog, feeling so overwhelmed. Halfway through that gratitude list, my spirits were lifted. Gratitude is a powerful thing. Hope and despair have become balanced again.

If you’re the praying type:

  • Judah’s still in pain everyday
  • The MEK side effects lessen
  • That Judah doesn’t get any of the disqualifying side effects that will kick him off the MEK
  • That despair doesn’t win out most days
  • That my kids feel loved and seen
  • Judah gets stronger so he can walk about without falling down
  • Emmett kicks this virus that has had him running a fever for 6 days now
  • Mimi’s lymphoma stays in check
  • Our trip to Memphis in a week goes well and we get great family time

Just keep swimming

Posted on by Wendi Thacker

So when I don’t have words, or my prayers feel inadequate, I know God knows the groanings of my heart. He knows my deepest longing — for the Miracle Maker to perform a miracle right here and now, in Judah. That His glory be shown through Judah’s living. Not in his dying. And also that I know, though it hurts, that God’s way are higher than my ways. His thoughts, higher than my thoughts. And it will be His will, not mine, that wins out.

Yesterday was Judah’s day 1 of Radiation Therapy (RT) and he was very nervous. So was I, even though I knew nothing would be different when he came out. Right before they injected the anesthesia, Judah looked at me, with tears prickling in his eyes, and said “Momma I’m really scared”. I asked if I could pray over him and he nodded. I prayed supernatural peace over him. Unconditional love. Safety only God can provide. And then the put in the medicine and he fell asleep. I went out to the waiting room, put on my sunglasses, and wept. 

The thing is, this whole situation is impossible.  Even the bravest, most incredible kid gets scared and wants to run away. To be held and told everything is going to be ok. And I do my best. But it’s not enough. So I went through my list of prayers for Judah.

I hate that he has to go through all this. That those who love him do too. That there is no “everything will be ok” because it won’t. Unless God works a miracle. 

Judah coughed and cried last night. He was in pain. And I didn’t sleep. Mommas don’t sleep when their babies hurt. I’m bone tired. But today is day 2 of radiation therapy and my littles are going to their 1st day of school, in Memphis.

So I got myself up. I helped Cricket get dressed and fixed her hair, like I did every day last school year. Made them breakfast, got their bags and drove then over to Aunt E’s. We scootered/walked to their school. I wanted them to feel loved and seen. My youngest, his 1st ever class, ran to his room and was, as always, ready for whatever! Big smile. My middle, not so much. She cried. She didn’t want “this” school. She misses her home. Her friends. Her school. I did the brave thing and told her it was going to be great. That she would have a blast. That I would see her after school and that I was proud of her. But I knew she wanted Judah. Because her school experiences have been WITH him. Her big brother. Little sister being forced into Big sister role. It’s not right. 

I got back to my car and fought tears. Lost. But not for the reason I should have been crying; my baby going to school for the 1st time. But because of what isn’t happening. And honestly, I’m struggling to find the fiber of hope I clung to yesterday. It comes and goes, my faith – my hope – my strength. And at times it doesn’t feel like the Spirit is interceding for me. It feels like I’m shouting into the void. And I want to turn my back and do it all on my own. But I know I’ll fail. My kids deserve better than that. So I turned on a worship playlist and drove back to our Home Away From Home. I forced myself to do a short quiet time but it felt fruitless. I was distracted. Heart sick.

So today, as Judah gets radiation for a terminal brain tumor, all I can do is ask God to grant us mercy. To heal Judah. To bless us. To be present. To show us His glory. And then keep asking. 

second chemo and nausea sucks

Posted on by Wendi Thacker

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.

baseline testing

Posted on by Wendi Thacker

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.

Port Surgery, Post Surgery, and Discharged! What a day!

Posted on by Wendi Thacker

Judah has been taken back to surgery for his port placement. He was pretty upset when they wheeled him off. Prayers for comfort for Judah and steady handed Drs!

Judah is out of surgery and everything went as planned. He now has his port in place for chemo.
Please pray he bounces back from anesthesia quickly and his recovery continues to make steady progress. We are also hoping to get discharged soon and hope the feeding tube comes out.

Also join us in prayer for a definite plan for his OT/PT/Speech. Right now we don’t know where we are going or how those appts will look. We also need a plan for chemo if we get to come back to Knoxville for his therapy. Pray for clear direction.

We are officially discharged from the hospital!!!
We will be coming back tomorrow for baseline testing and then Wednesday is our first Chemo treatment but after that we get to come home to Knoxville!
We have been working hard for a week to figure out where we could do Judah’s pt/ot/speech and after giving up on Knoxville, I woke this morning and felt the urge to call East Tennessee Children’s Rehabilitation Center and just tell them our story in hopes they would change their minds about speech (it was wait listed for 6 months). They listened and then said that our oncologist could call and talk to them and of they felt Judah’s case was immediate enough they would move him to the top of the list.
So at 10am this morning I told our Case Manager, who told our oncologist, who agreed Andrew some calls and then after hrs of back and forth we got the word that they had agreed to take him!
So now we get to come home and do pt/ot/speech and Chemo in Knoxville! We are so grateful that we will be home, surrounded by our community, friends, support system. Thank you for your prayers. Keep them up. We have a long road and it is really just beginning. God is directing our path and we are finding that though this isn’t the rd we would choose, our sweet Jesus will not abandon us and will continue to go before us and behind us.

Port Surgery tomorrow

Posted on by Wendi Thacker

Judah’s had a good couple of days.

As I sit here typing this, he’s snuggled in his hospital bed playing. That’s a big deal because he used to do that every night when we’d put him to bed but hasn’t since the surgery. We’d put him in bed around 8:30 and he’d lay there reciting the dialog or humming the theme music to his favorite movies or acting out fighting scenes from his Next Avengers cartoon until usually 9:30 or 10 (we’d only have to tell him to be quiet 3 or 4 times before he’d hush). He’s not quite back to his chatty self at the moment but he’s over there swinging and punching his way through some imaginary fight scene.

Judah got to spend yesterday afternoon and most of this morning with Papa Doc and Mumzy and got to spend this afternoon with Mimi and Papaw. A friend from our church who’s been through chemo before came and visited and showed Judah her port so he wouldn’t be scared of tomorrow’s surgery.

Most importantly, Judah has spent the last two days eating! He’s had three full meals a day for two days now and has eaten almost all of them. The docs still insist on giving him tube feedings at night but I feel like he’s getting the calories he needs now during normal eating. There is a chance he’ll get to go home tomorrow after his port surgery so we’re praying for a quick recovery so everyone will feel comfortable sending him home! The first chemo treatment will be on Wednesday so we won’t have time to head all the way back to Knoxville but at least he’ll be out of the hospital.

We also hope to get a few more details ironed out about his physical/occupational/speech therapy tomorrow so prayers for God’s guidance in that area are also appreciated.

judah eats more food

Posted on by Wendi Thacker

Judah had a good night and woke this morning hungry. He ate 3 pieces of bacon, 2 strawberries, 1 container of blueberry yogurt, and 3/4 a carton of milk! Off to a good start! Keep praying he continues to improve and the tube comes out!

real food and we get out of the PICU!

Posted on by Wendi Thacker

Judah got to try some yogurt for the first time since the surgery! Swallow study this afternoon will tell us if he can go back to eating regular food.

Judah passed his swallow study so he gets Chic-Fil-A for dinner tonight! We got to drive him around the hospital in a wagon with no wires and no nurses and he got a couple of stuffed animals from the gift shop. His speech is getting better his strength is growing and he’s in a better mood. Thank you for your continued prayers and praise Jesus for a happy and healing little boy!

What a day this has been! Judah wakes talking, plays hard, eats yogurt, passes his swallow study, gets out of the PICU for a wagon ride, and then comes back to his room for some Chic-Fil-A only to be told he will be moving to the floor soon!!! Praise Jesus for such a wonderful, hope restoring day.
Thank you for being a praying people.
He is now comfortably resting!

http://youtu.be/HKGV2TTXU8o

Still here…

Posted on by Wendi Thacker

Still in the PICU.

Judah had a couple of naps today and during each of them he had a “desat”. That’s med-speak for his blood losing it’s oxygen saturation level. I put it in quotes (and yes I’m a little bitter) because I don’t actually believe either of the occasions were a real loss of oxygen in the blood but false positives inherent to the way this is measured. I made my case to the docs but out of an abundance of caution they took him off the list to move to a normal hospital room and decided to keep him in the PICU. We’ll pester them again tomorrow.

Otherwise he had a fantastic day today. He said a bunch of words today – honey, piglet, owl, brave, stuck, rabbit, bubby, my sister and parasaurolophus. None of them are perfect but the speech therapist says that his lips seem to be functioning well but his tongue’s not all there yet. He was super active, fighting dinosaurs with me (matthew), kicking his feet, sitting up on his own and batting both arms at a balloon. The PT/OT people had him up walking though not really holding his own weight up and he actually interacted willingly with them.

The next 6 days are likely to be frustrating and hectic. Judah’s oncologist wants to start chemo as soon as possible. While his tumor is the lowest grade and slow growing, it’s location means that any growth could have potential long term complications. So chemo starts Wednesday. Monday morning he’ll have his port put in (yes, another surgery with anesthesia), Tuesday he’ll have a bevy of tests to get some baselines before he starts chemo. Wednesday he gets the first treatment, followed every Wednesday for 10 weeks, then a two week break, then 4 weeks on and 1 off for a year.

Our problem is therapy. We had hoped they would be able to work something out were he could get pretty intensive outpatient therapy at Vandy but it’s not going to be ideal. For one they don’t have speech therapy so we’d have to find some place else for that. Second they would be wedging him in wherever there are openings in whomever’s schedule had an opening so there would be no routine or chance for a therapist to build report with him. It would be a different therapist at a different time every day for weeks and probably only an hour a day. There are other therapy centers that offer all three types, O/P/S, but they don’t take insurance and while their rates are lower than places that do take insurance we’d still be paying a ton out of pocket for the amount of therapy he needs.

Judah’s becoming more like his old self everyday but still needs lots of prayer. Prayer for continued healing, prayer for him to have patience for the dozens of people poking and prodding him and making him do stuff all day, prayer for a working therapy plan (and a way to pay for it), prayer for yet another surgery, prayer that chemo has few if any side effects and that it is effective in stopping the tumor permanently, prayer to get out of the PICU, prayer to get out of the hospital, prayer that Wendi and I have patience with the docs, nurses, bureaucracy and insurance companies and prayers for a long road ahead.