Tag: prayer

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

and this is hope

Posted on by Wendi Thacker

There is a difference between pleasure and blessedness. Paul experienced imprisonment, pain, sacrifice, and suffering to their very limits, yet through it all he was blessed.

Dearest tested and tried believer, it is your mission to walk onto the stage of this world in order to reveal to all of heaven and earth that the music of life lies not in your circumstances or external things but in your own soul.

~Streams in the Desert, excerpts

This morning I woke feeling a sense of instability. Equal parts joy, weariness, and expectancy. Judah is low sick. And we got amazing news. If this cancer fight has taught me anything, it’s the beauty of balance. Balancing possibility and expectation. Faith and fear. Hope and suffering. Seeking and resting. And that necessary balance is impossible without Jesus. 

Sunday Judah got a fever accompanied by a hateful cough and we had to take a trip to the Medicine Room at St. Jude. They agreed that he was wheezing a bit but felt comfortable sending us home after fluids and a prescription for a humidifier, rest, and lots of water.  By Tuesday, the cold that sent me to bed for 3 days, feeling worse than I remember ever feeling, had taken up residence in my son’s chest.  It almost delayed an exciting procedure where an ENT inflated Judah’s vocal cord to give him more support and strength. That, along with Botox injections into some of his salvitory glands to reduce secretions, hope to put an end to Judah’s micro aspirations and chronic cough. But through God’s great grace, the Nurse Practitioner and CNA saw my vulnerability and decided to go against protocol and give Judah 24hrs to sound better. And God parted the congestion, like He did for the Israelites with the Red Sea, just long enough for Judah to safely have his procedure. The congestion crashed back down on him, complete with wheezing and sinus headache. And even though Judah was sick, I praised God’s name because He blessed us.

For the last 3 weeks, I’ve woken with a different praise and worship song in my head, embedded and on repeat. Thursday I woke, dreading our long day at the hospital. I was also feeling a sadness because the day before I had finished a 40 day prayer plan that had become part of my day-to-day. It was integral in me finding my way back to the heart of Jesus. And the song Old for New by Bethel Music kept circling in my head, pushing the dread and sadness aside.

V1
What was torn you mend again
You redesign the tatter thread by thread
You take the broken and destroyed
You rebuild, You make whole
Chorus
Joy begins to rise
Hope begins to light the dark
Our God exchanges old for new
Dawn has conquered the night
Death has lost to life
V2
And now we are exchanging old for new
You turn flame into a fire
In you we walk in the impossible
We take Your love into the world
We let our light shine, we let it burn
Bridge
There’s nothing that Your love won’t do
There’s not a mountain with can’t move
There’s power in the blood
There’s power in the cross

I did as I always do, give in to the gift of a song for my day, and claim it.

And then when we got to Judah’s Neuro Oncology appointment and found out the genetic testing results were back.

For those who haven’t been following our journey, St. Jude sent a sample of Judah’s tumor to a lab to be genetic tested, broken down, to look for clues to a possible treatment option. Because in the last 9 months Judah’s tumor has shifted from a low grade Pilocytic Astrocytoma to High Grade Diffuse Intrinsic Midline Glioma, it’s terminal. Radiation has a lot of side effects and his tumor is chemo resistant. The genetic testing was our last ditch effort to find SOMETHING.

And it wasn’t until the Drs said the results were back that I realized I had hung my hope on what they were about to say. And they were smiling.

The test showed that Judah had 4 relevant gene mutations:
K27M
P53
NF-1
NF-1 (variant)

We already knew about the K27M mutation. It’s the murderer. The one no one knows how to stop. The P53 mutation is common in cancer and isn’t targetable. And then 2 variations of the NF-1 gene mutation. This is one the drs seemed excited about. 

They explained that the NF-1 gene is like a controller for cell division. It’s job is to make sure that cell division stays balanced by turning on and off. When it mutates, it never turns off.

My eyes began to blur. 

They continued. The NF-1 mutation is typically a “driver” in tumor growth. But it’s rarely found in High Grade tumors. It’s more often found in Low Grade tumors. So its possible that this mutation is what made Judah’s tumor shift from Low Grade to High Grade.

Now I’m holding my breath

Drs again. And we think we can use MEK Inhibitors to counteract the NF-1 mutation. 

WHAT?!? (Internal dialogue: KIND OF BURIED THE LEAD! Are they saying they have a cure?)

Drs explain. This is ALL speculative. We do think MEK Inhibitors work to counteract the NF-1 mutation, but we do not know if the NF-1 mutation is what’s causing Judah’s tumor growth. And we won’t know until the growth halting effects of radiation wear off. In 3 months to a year we will either see tumor growth or we won’t. And there is literally NO clinical data to look to. Judah is 1 of 3 kids reported to have a shifted tumor kind with the presence of the K27M gene mutation in both tumor types. And the other 2 don’t have the NF-1 mutation, as far as we know. This is NEW territory for us. But when you brought Judah to St. Jude, we wanted to be able to give you guys hope. And this is hope!

So basically we are all stumbling around in the dark together but St.Jude and Jesus have resources like flashlights! I’ll take it. And praise God for His victory over my doubt.

Prayer is a funny thing. I’ve spent the last 8 weeks praying for healing. Praying for more time. Praying for acceptance. For daily joy. For closeness. I have been specific and general. And over time, my prayers have widened. I still pray for the same things but I have learned to pray God’s word. To pray to have his eyes and ears so I can see His hands and hear His encouragements. To pray that His will be done and mean it. To believe that God’s love for me is greater than my unbelief. His peace is greater than my fear. His strength, my only chance for strength. His word, truth. 

I have told you these things, so that in Me you may have perfect peace. In the world you have tribulation and distress and suffering, but be courageous [be confident, be undaunted, be filled with joy]; I have overcome the world. [My conquest is accomplished, My victory abiding.] John 16:33 AMP

This verse thrown around a lot when people are suffering. I’ll be honest, when I see it, I usually roll my eyes. But today when it popped up in my quiet time, I wept. Because God can overcome our cynicism. 2 months ago, when a praise and worship song came on about God being a mountain mover, or how great His love is for us, or worse, how they’ll praise Him even though everything is falling apart, I would roll my eyes and change the station. I would say, what trials have these super famous worship bands been through? When did they have to choose to praise God as their heart broke in half? It Is Well my foot. They don’t know.  

But now, I let loose my hands, close my eyes, and praise Him with the words inspired by God’s nature and goodness. Because recently I had an epiphany. It  doesn’t matter if the writer or singer or friend has been broken and spilled out. What matters is that I believe the Holy Spirit inspires, moves and works in the lives of God’s people for His glory. I must give Him glory in the big and small. For the things I asked for and the things I didn’t.

We praise God that He is showing us His works in this new treatment option for Judah. We praise Him that our hope is stronger than our strife. We praise Him that He fights for our hearts. And if there comes a time when we can no longer see Him working, we will remember His truth, that he is still working.

Shore me up

Posted on by Wendi Thacker

I have been kind of in shock at the way God is confirming that He, in fact, does hear me. I want to clarify up front that God has NOT healed Judah. He has not made his belly pain go away. He has not even consistently deployed His Spirit to speak into the dark, sad, broken places in my heart and comfort me. What He has done is help shore up and mend my questioning and doubtful heart.

It all started two Friday mornings ago. I was doing my quiet time and the verse that went along with the day was Psalm 61:1-2 

Hear my cry, O God; attend to my prayer. From the end of the earth I will cry to You, when my heart is overwhelmed; lead me to the rock that is higher than I.

We had been admitted the day before for possible pancreatitis. Then Friday, Judah had a massive headache after radiation that turned into a Rapid Response scare. Matthew and I were terrified. We kept looking at each other and then Judah, wondering if this was somehow the beginning of the end, already. The drs didn’t help our anxiety because it was obvious they were all very concerned. After 2 hours of multiple drs and teams and tests and checking on Judah’s state, it was agreed that Judah had a bad reaction to a new pain medication they were trying. The reversal agent would cause him more pain so we had to just wait 6 hours for it to wear off and for Judah to stop suffering. I forgot mention, Camilla Kate was with us at the hospital visiting. It was hell. I was overwhelmed with an intense need to be two places at once. I wanted to be holding both my babies, comforting them both for very different reasons. As I prayed for Judah to be ok, I prayed for Camilla Kate to be comforted and protected. And as I was praying, I felt myself sinking into that dark place where I am faced with grieving and comforting at once. I was sinking quickly, listening to Judah scream and watching Cricket hide.Then a prayer came to my mind from that morning. 

Help me release the burdens that preoccupy my mind and keep You at bay. Come near to me!

I repeated it over and over. I started to see. Return to the present. It wasn’t easy and the pain in the room didn’t disappear but I was ok. I prayed that Judah’s pain wouldn’t be more than he could bear. That the pain would would drag us closer to Him. That we could have more understanding and compassion for Judah. That if there was joy to been seen from this, we would have eyes to see it. Then Saturday morning a friend texted me a picture of 2 pages from a book. She told me God had brought the book to her mind and when she pulled it out, the pages were already bookmarked. It talked of pain, disease, prayer, miracles, and joy. A few excerpts spliced together: 

“We prayed that she would not have more pain than she could endure…the prayers never stopped, and the pain never got too bad to be relieved. As far as I am concerned, that is a miracle, corroborated by the doctors. Bethie wasn’t cured. She died. But she was healed. There’s a lot about this kind of healing that I don’t understand…And it helps, when we are praying for others, if we have some understanding of what we are praying about. I can pray better about pain, because I have had severe pain. Whether this my ill fortune or my good, it does help enlarge my capacity for compassion for those in pain…and out of the event in life which seem most negative, positive joys are born.”      

-Madeleine L’Engle, The Irrational Season

I read that text and wept. There are words from that excerpt that were almost exactly in my prayer the night before. God pulling at my heart, whispering “I see you”.

Monday morning’s quiet time started on Isaiah 60:20 

Your sun shall no longer go down, nor shall your moon withdraw itself; for the Lord will be your everlasting life, and the days of mourning shall come to an end.

The prayer that went along with that verse was so timely. 

Help me to see the light at the end of my tunnel. Sometimes I can barely remember what light looks like or what it feels like to have simple joy. Help me focus on You even in the darkness.

Judah was doing much better that evening so Matthew and I took the opportunity to go out to dinner while my Mom hung out with him at the hospital. We talked a lot about having/not having hope for the future. I was leaning in the direction of “preparing myself”. Matthew was incredibly gentle and patient, listening and comforting me, while also laying out where he landed on the idea of hope. Which happened to be wildly different than me. He explained that if we believed that he was going to die sooner rather than later, we would spend the rest of our time left with him, in early mourning. And if we believed he would definitely be healed, we were being purposefully naive and run the risk of minimizing the pain and fear associated with a terminal cancer diagnosis. He proposed that we sit somewhere in the middle. As I cried, he shared the concept of both grieving and being present. That crying and feeling deep sadness for what is happening now and what may happen is normal and good. But sitting in it, living in it, refusing to fight to get out of it, is unhealthy and unhelpful. That if we don’t look for things to be grateful for, little joys, we will miss ALL of it. He reassured me that the way I felt wasn’t wrong. That the suffocating feeling of his ‘last birthday’ approaching was right to feel. And also, that we have to give ourselves time to feel those feelings and then CHOOSE to come back to now. 

This man, that God gave me, knows me so well. Knows how to help and how to pull the yucky stuff out of me. Knows when to push and when to leave me be. And if I’m looking for something to be grateful for right now, he is it! And God used my prayer time that morning and our conversation that evening to nudge my wounded heart toward Him some more.

Wednesday, Judah had radiation and a g-tube replacement procedure. While Judah was down in radiation therapy, our Chaplain came by the visit. He didn’t stay long but the time he spent with me was reassuring and encouraging. I told him that even though Judah’s diagnosis was terminal, we hadn’t given up hope and were still praying for a cure/healing. He nodded and smiled. Then began to tell me about the Parable of the Unjust Judge, which I somehow had NEVER heard or read. And just in case some of you haven’t heard it either, here it is: 

Now Jesus was telling the disciples a parable to make the point that at all times they ought to pray and not give up or lose heart saying, “In a certain city there was a judge who did not fear God or respect man. There was a desperate widow in that city and she kept coming to him saying, ‘Give me justice and legal protection from my adversary.’ For a time, he would not; but later he said to himself, ‘Even though I do not fear God or respect man, yet because this widow continues to bother me, I will give her justice and legal protection otherwise by continually coming she will be an intolerable annoyance and she will wear me out’.
-Luke 18:1-5

This parable struck a chord in me. It is so easy for me to fall into despair when my prayers go unanswered. I don’t want to hope and have faith. I want the miracle and I want it now! But the Bible is clear on this topic. We are told to pray anyway! Matt 6:9-23, 1 Thes 5:16-18, Eph 6:18, Col 1:9, Heb 4:16, 1 John 5:14, Matt 18:20, Acts 2:42, Romans 8:25, Phil 4:6-7, James 5:16 all (and many more) give guidance on how to pray. And so we will continue to pray regardless of the outcome, clinging to the hope that God has unfulfilled promises for us.

A little later, I was perusing Twitter, which is usually not a good idea as it is filled with vitriol, and noticed my sister (twitter.com/expandyourus) had alerted me to a thread. I excitedly navigated there and began immediately to see God’s care for me. The thread was about lament, struggle, and pain. And it was a direct connection to the Chaplain’s words earlier today! 

Just because God never promised us the miracle baby, the anonymous check that magically cover all the expenses, or the physical healing on this side of eternity – It doesn’t mean I’m not still called to ask for them, again and again, humbling myself into what feels like outright naiveté and choosing the terrifying vulnerability of believing He just might do it – all the while submitting wholly to His will and acceptance that He may say no once again.
– Stephanie Tait (twitter.com/joyparadeblog)

God wasn’t whispering or nudging me this time. He was jumping up and down, shouting, “I’m here, see me? It’s me! I see you!” I have spent the last week reflecting on these three very poignant moments. I have talked about them and prayed about them. I have thanked God for His very real presence. His answer to my daily prayer that He would come near to me. And in these moments, day-to-day, woven together in a way that makes it impossible for me chalk them up to coincidence or love of friends, God shows me His hand. His care. God has not answered our prayers for a cure. For healing. He hasn’t said no either. And as a wise man told me last week, God’s will is at work in the 1st hour and in the 11th hour and all the hours in between. We will keep praying for healing. And we will keep submitting to God’s will, while hoping that God’s will aligns with our dreams for Judah!

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. 

Praise him anyway

Posted on by Wendi Thacker
God I look to you
I won’t be overwhelmed
Give me vision
To see things like you do
God I look to you
You’re where my help comes from
Give me wisdom
You know just what to do
I will love you Lord my strength
I will love you Lord my shield
And I will love you Lord my rock
Forever all my days, I will love you God
Hallelujah our God reigns
Hallelujah our God reigns
Hallelujah our God reigns
Forever all my days,
Hallelujah
-God I Look to You, Bethel Church

A week ago today, Matthew and I waited with equal parts fear and hope, for news about Judah’s tumor pathology. The next day, our world was shattered and I told God I hated Him.

Over the last week, I have wrestled with my longing for the comfort only Jesus can offer, and my crisis of faith and trust in His goodness and love for me. I have asked myself what it means to trust in God.

Trust is a firm belief in the reliability, truth, ability, or strength of someone or something. To set one’s hope and confidence upon, to be secure fearing nothing.

These definitions don’t lend themselves to trusting halfway. One either has a firm belief or they do not. When we set minds to something, that brings to mind a stubbornness, right? If I set my hope and confidence in God, then that shouldn’t waiver. Does that indicate that I didn’t trust God completely before? I cannot answer that. I can say that in 2013, I trusted God with Judah completely. I believed in His goodness and His vision. I believed He was working to complete a good work in us and everyone that knew Judah. Maybe that was because the Drs told us Judah had an 80% survivor rate. Maybe it was because his diagnosis came at a point in my life where I was diligent with my quiet time, verse memorization, and journaling. Maybe it was because I saw our faith and Judah’s fight bringing people closer to God. I watched my nephews ask hard questions and wrestle with what they knew of the Lord and what was going on with Judah. And they turned to the Lord. I saw God’s glory being magnified. The pain Judah was experiencing, the heart-hurt Matthew and I were living with, seemed to be ‘ok’ because we knew Judah would live and God’s kingdom was growing.

But Judah doesn’t have a life expectancy this time. People all around us are losing their faith in God’s goodness. Matthew and I are clawing to hold on to the belief that God is reliable. Loving. Powerful. We see many accounts in the Bible of God displaying His power and mercy so His glory would be known.

Psalm 106:7-12
7 When our fathers were in Egypt, they gave no thought to your miracles; they did not remember your many kindnesses and they rebelled by the sea, the Red Sea. 8 Yet He saved them for His name’s sake, to make His mighty power known. 9 He rebuked the Red Sea, and it dried up; he led them through the depths as through a desert. 10 He saved them from the hand of the foe; from the hand of the enemy he redeemed them. 11 The waters covered their adversaries; not one of them survived. 12 Then they believed His promises and sang His praises.
Habakkuk 2:14
14 For the earth will be filled with the knowledge of the glory of God, as the waters cover the sea.
Psalm 25:4-7
4 Show me Your ways, O Lord, teach me Your paths; 5 guide me in Your truth and teach me, for Your are God my Savior, and my hope is in You all day long. 6 Remember, O Lord, Your great mercy and love, for they are from of old. 7 Remember not the sins of my youth and my rebellious ways; according to Your love remember me, for Your are good, O Lord.

We are searching the expanse for a hint of God’s glory in all this pain. Every time I take Judah to an appointment, I say ‘Even now Lord. Even now You can show us Your great power and glory. Please. Show us Your glory.’ And then when nothing happens, ‘God, what are you waiting for? I do not understand. Help me understand.’ But I don’t understand. I want to see. But honestly, what could God show me that would make my son’s life a suitable price?

I have begun to talk to God again. I turned on  praise and worship music yesterday. I have opened my bible. I have even read some of it. I am still very angry. Still very sad. Very scared. And I don’t have unshakeable trust in God on Judah’s behalf.

But I am begging, on my face, at the throne of grace that God will spare Judah. That He will grant us mercy. That He will remind us of His love and presence. That He will hear the prayers of His children and grant our request. And I will keep doing that. Every day. Because, to paraphrase my sisters, whatever anger and disbelief there is, in the end, Jesus is the only way out of despair and hopelessness.

St.Jude journey beings today

Posted on by Wendi Thacker

We are pulling out of the driveway, headed to St. Jude for Judah’s patient evaluation. We will be there through Monday so we had to pack like we are going on a week long vacation. 

Toys and books for the kids, books and technology for parents, clothes, sleep friends, toiletries, medicines, chargers, waters, snacks, wallets, phones, glasses, hair ties, swim stuff, and then all of Judah’s oncology stuff! And it it just a lot. Even with packing most of the stuff yesterday, we still ran around for 2 hours trying to check every box. 

But we are on the way now. We are so very thankful. And also incredibly anxious. So many unknowns and hopes. St. Jude has pursued us over the last month. Seeking out all of Judah’s medical records from his various providers, connecting with us several times a week with questions and encouragement. They made it abundantly clear that they wanted Judah at St. Jude. That they had plans, ideas. That they were moving pieces to get Judah a spot. 

Last Thursday, while I was enjoying a birthday evening at the Spa with my best friend, St. Jude called with 3 days of scheduled appts for Judah! I missed the call but surprisingly, the number in my ‘Missed Calls’ was a direct line. Matthew and I could hardly believe our luck. When we miss a call from any non-person, it is always a switchboard. I then spend 10 mins trying to ask for the right place/person, hold for awhile, and then leave a message, only to wait 8-24 hrs to hear back from a nurse. Not at St. Jude. 

Today is New Patient Registration. Thursday will be a full day of Drs, consults, and labs. Friday is more consults and the MRI. We aren’t sure when or how we will get the results. We are planning to stay in Memphis over the weekend to spend time with my brother and his family. That way if St. Jude wants to see us Monday, we will be there.

We are in need of prayer and encouragement. We are not sure what St. Jude is going to want to do but we are assuming it will be different than Judah’s current course of treatment. And that is both exciting and scary. The last thing we want is to walk down the road we walked 5 yrs ago. Surgery. But we also want Judah to have the best quality of life. So we are praying that whatever course of treatment he ends up on, where ever he ends up being cared for, gives him just that. And that Matthew and I are able to hear, process, and make adequate decisions for Judah. That we will be strong enough to delay our immediate responses to think, pray, talk, gather information BEFORE making any decisions. That Judah’s tumor will be stable enough to allow us that time.

School is about to start. And it’s Cricket’s Kindergarten year. And I don’t want her to miss that with her friends. I don’t want Judah to miss 4th grade either!We don’t want to spend a long chunk of time away from Knoxville. Our friends, church, school. And we are struggling with the idea of moving Judah’s current care to somewhere other than Nashville. Really because the Kellett’s have been with us since day one 5 yrs ago. Caring, laughing, feeding, distracting us. Talking things out with us, pushing us individually and as a couple to be better. Being our inner circle and safe place to share or not; cry or not; be. And that’s not easy to give up. 

But I’m borrowing troubles from tomorrow. We don’t not know what is in store for us. What we do know is that Judah is suffering and we need answers. We have given Vanderbilt and ETCH a shot and now we are trying something different. 

We love receiving texts and emails from you guys. Encouragement helps so much. Thank you!

Feeling is exhausting

Posted on by Wendi Thacker

It’s 7:15AM and I’m, yet again, sitting in the ER with our Bug. We have been here since 5.

When we woke to Judah crying out for help, I assumed it was that he needed help with the feeding bag. I groggily got up and walked into his room. He was moaning and said he needed help with the bag so he could pee  I reached down to help him up and his hand was on fire. Thermometer read 104.4.

I am great under pressure. I’m wonderful at comforting and helping. I laugh and cry easily and embrace ‘all the feels’! My 2-ness with a 1 wing makes me great at these middle of the night, sick, moments. When things get stressful and 8-ness takes over I can become a machine. I get things done, making sure everyone knows what they need to know. Inefficiency drives me mad. And usually, the tears are turned off. You get ‘business Wendi’.

Tonight I cried to the ER Dr. I do not do that. I was telling her how frustrated I was that we keep showing up here and no one can figure out what is causing Judah’s fevers. And I started to cry. In trying to stop myself, I made things worse and started breathing unevenly. And I was morbidly embarrassed. The voices in my head telling me that I should be.

“What a ridiculous way, for a seasoned mom of a kid with cancer, to act. This Dr now no longer takes you seriously because you are falling apart over nothing. Suck it up. There is a time and place for those tears and now is not that time.”

Thankfully, Judah slept through my blubbering and the Dr left shortly after.I sat on that uncomfortable chair, watching my boy sleep, thinking about all the things I was beginning to believe about myself. None of it was true I knew that. And yet, I felt as though I was being weighed down by all my inabilities. Matthew texted me:

“The Bible apps verse of the day was no weapon that is fashioned against you shall succeed, and you shall refute every tongue that rises against you in judgment. This is the heritage of the servants of the Lord and their vindication from me, declares the Lord.
‭‭Isaiah‬ ‭54:17. So I’m praying over that.”

Jesus is good and His love for us is real and tangible guys. While my soul was being crushed by judgement and I was failing to see my worth or abilities, my husband sent me a bible verse that addressed those very things. Jesus has shown me over and over that He wants to and will show me His love and care for me in little ways. I just have to ask, look, and see.

We are getting admitted. The Drs say there are too many unknowns what with Judah’s, chemo, surgery, port, and these unexplained fevers. They don’t want to send us home in case they’ve missed something. We are still waiting for a room but we’ll be somewhere on the 2nd floor/North Tower.

Pray with us that the drs/tests will reveal something that is causing these fevers. That Judah will not be broken-hearted over getting admitted again. That he will continue to heal. That spiritual warfare will have no foothold here.

Thanks

Judah is still very sick

Posted on by Wendi Thacker

After Judah’s last chemo, he never really bounced back. He hasn’t been ill the whole time but has been tired and had very little appetite. Then Sunday he became incredibly lethargic. He was white as a sheet with huge blue bags under his eyes. He ate 2 pieces of bacon all day long and drank about the same. He did not move from the couch/floor.
Matthew and I had been out of town and returned today to find him looking the way I described above. It was shocking. So shocking. Today we have spent the day getting fluids in him. He has eaten a bit more but everything runs straight through him. And he feels wretched.

This is so much worse than he was the first time we did chemo. And we have a long, long way to go. We want more than anything for him to be better and know that the chemo is killing the cancer. But it feels like it’s killing him too. And that is almost too much for a momma and daddy (and grandparents, aunts/uncles, cousins, friends) to stomach. We are watching him with tears in our eyes. Doing the best and knowing the best is not even close to helping.

We will be taking him to see his Dr tomorrow morning and fully anticipate him being admitted to ETCH. Please pray for him and us. Pray that tonight is uneventful and that we get a solid plan for helping Judah with his diarrhea and nausea so he can start to get a little more energy. Pray that we get a feeding tube put in soon and that it helps. Pray for his spirits. He is so sad and tired. And so are we.
Thank you friends.

Chemo 4 done and side effects ramp up

Posted on by Wendi Thacker

I’ll start with the most important news first: Judah’s tumor hasn’t grown since we started chemo!

The radiologist hasn’t actually read it yet but we looked at with the dr and you can see it hasn’t grown! We also saw, and the dr confirmed, that there is less contrast (lighting up) so that means the chemo is killing those growing cancer cells. We are so elated! We won’t know if it’s shrunk until we see the radiologist’s report but we feel confident that this MRI is good news!

He has already had his labs and anti nausea meds. Everything looked pretty good. The dr said it looked, by his labs, that he is fighting “a little something” by the slight elevations but nothing to be worried about.

We did have to have a talk about his weight. He had lost weight…again. Dr pulled up Judah’s growth chart, which I always dread because he hasn’t been on a growth chart since he was 4, and showed us that Judah is in the 0.02% for his age. That means if you picked 1,000 kids randomly, he would be the smallest and thinnest of all those kids. And the kicker is, that he has now lost so much that he is technically considered “failing to thrive”. This wasn’t shocking to us because we have been fighting his weight loss and lack of appetite for 5 yrs. But the failure to thrive was heart wrenching. The dr was quick to tell us that we have done nothing wrong. That gaining weight is hard for a lot of kids with cancer. But also said that we can’t do nothing now. So in the next couple of weeks Judah will probably be getting a feeding tube (NG Tube). For those of you who are medical people, he can’t get a G Tube because the chemo makes it too hard for his body to heal. They can’t do surgery unless he goes off chemo for 4-6 wks. And we aren’t doing that right now.  Judah is very sad. He doesn’t want  to be “Judah with cancer”. He wants to be “just Judah”. And the NG Tube will be on his face. And people will see it. You can hide a G Tube under your shirt. It’s a bummer. But it’s also necessary at this point. Judah is an amazing kid. He sweet and gets “it” like most kids can’t. He understands he has to have the NG Tube. And he will get to a better place because that is just who God made him to be. Brave and introspective and sweet and trusting. Join us in praying for his heart. And that his little friends can see past the weird tube and treat him like “just Judah”!

He finished his chemo in great time and we went down the street to McDougal’s Chicken, before we headed back to Bam’s for the night. We planned ahead of time to stay over night in case judah was sick and boy am I glad we did. About an hour after he finished chemo he started getting sick. We had to rush to the bathroom several times before we even got back to Bam’s. Unfortunately, Judah was sick the rest of the day and into the night. He hasn’t been actively sick today but he also hasn’t eaten much.

Thank you for celebrating with us and praying with us. We are grateful for our community!

Last day of school and 6wk MRI

Posted on by Wendi Thacker
Judah and Camilla Kate (Cricket) had their last day of school today. It was full of fun and parties and sweet hugs and goodbyes. Thankfully, the co-op family is close and we will still see our friends throughout the summer.
While the kids were at school, I busies myself with cleaning and packing and searching for Judah’s long lost bey blade he “really needed to show to Gabe!” *Insert exasperated 9yro voice* Packing for Nashville isn’t usually very hard, but this time, since he’ll be doing chemo there tomorrow, I had to pack for chemo day too. It was hectic and frustrating and I did not find the bey blade though I searched for almost 30 dedicated minutes?
As I loaded the car, I kept running through my mental list of must haven’t items knowing I would forget something. And I did. Matthew and my toiletries…of all the things to deal with on chemo day, stinky breath and armpits was not one of them. We weren’t far from home when I realized it so we went back!? My mother has always told me to make a list, put it the car when you think of it…I’m a great listener ?
After dropping off Emmett at Mimi’s, meeting Mumzy to get her lasagna, we finally got on the road.
God has blessed us with beautiful weather and traffic and we are about to pull into Bam’s as I type this. But before I leave you, I want to request a few specific prayers:
1) That Judah’s rocks his MRI at 7est and is very still so the picture is crystal clear (he does them awake bc he’s a rockstar!)
2) That the MRI shows that the chemo is working and Judah’s tumor has stopped growing (or at least shrunk)
3) That tomorrow’s chemo (begins at ~10am) goes by quickly and that the nurses are kind.
4) That Judah doesn’t get sick during or after chemo.
5) That God continue show us His enormous love and care whether through continuing to provide for our every need (And He has!) or healing Judah completely or both!Matthew and I cannot thank you all enough for showing up and showing out for the Thacker pack. We are in awe at how The Mover of Mountains has battled for us through y’all.