and this is hope

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.

Other people words are life giving

My older sister, Brandi Kellett, has a blog. She writes on social justice, equality, community, and faith. And she does it with a grace AND force that humbles me. She has also been  encouraging, praying, feeding, and providing (along with many others!) my heart with manna. Enough to get me through today. No more, no less. Today she posted an essay entitled, Han Solo, On Faith and Hope

I have never reposted one of her essays before.  But today, I felt the need to. She talks about Judah in a beautiful way. And she talks about the hardness of hope. Of the fragility of faith. Of the need for Jesus. Because we ALL, in the face of the impossible darkness we live with in this broken world, need Jesus to ‘help our unbelief.’

Politics, opinion, religion aside, I encourage you all to go to her essay and read it.

 

Shore me up

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

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

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.

How do we make it count?

How do you live in the moment, day in and out, knowing the days you have left are numbered? There are so many movies depicting adults traveling to Europe, climbing mountains, visiting family, learning to do that thing they always wanted to do just before they die, surrounded by family and friends. But they’re adults. And they’ve lived a life. And end of life rarely gets tied up in a bow that neatly. 

How do we make sure that every day is full to the brim with joy for our almost 10 yr old and his younger siblings? Of course that’s a question we should have been wrestling with since our 1st was born. But life gets in the way, right? The first words turn into “you’re too loud”. First steps turn into “go outside and play please”. First bites of table food turn into “just eat your food so we can be done”. And before you know it, their going to college, falling in love, all the things we dream for our children. And the time with them becomes short but sweet. At least that’s what we all hope for when life is flying by at a break neck pace.

When Matthew and I first found out about Judah’s cancer, we vowed to make every moment count. Then, when he started talking again after his 1st brain surgery, we said we didn’t care what he said or how he said it, as long as he did! And then he was 1 yr no growth. 2 yrs no growth. We got comfortable. We settled back into the life of ‘we have plenty of time’. We forgot how precious life is and how lucky we were to still have Judah with us. 3 yrs no growth. 4. And then growth. And more growth. And more. And we kept telling ourselves, the chemo will work. The inhibitors will match. The surgeon will de-bulk. He’ll be fine. Because he was last time. And we wanted more time. We held onto hope even though the specialists were giving us the facts and they weren’t pretty. We asked for specific prayers from 1,000’s of believers. We laid on our faces and begged God to save Judah. To give us more time. To show us His glory. 

But the news kept getting worse. 

And God didn’t show up. This isn’t a rescue story. It’s a heart-rending story of love and loss. 

So back to the questions that won’t let me sleep. How do we as parents make sure Judah lives every day he has left? How do we give him the chance to do and see all this world has to offer an almost 10 yr old? What would he even want to do with the time he has left? Watch TV. Play the Nintendo Switch. Be with his sister and brother. Cousins. Friends. Grandparents. Aunts and Uncles. Do his life with his family. He’s not old enough to know what he’ll miss. Not old enough to appreciate the grand canyon or the coliseum in Rome. His favorite things are imaginary. Pokemon, star wars, video games, Mario, bey blades. He’s still so little. 

He has no idea what death is. We tried to explain but he doesn’t get it. He doesn’t remember burying my grandfather or Matthew’s. And if he can’t get it, how in the world do we explain it to his sister and brother who love him so deeply? They will just miss him and want him to come back. We all will. But they won’t have the tact to not say it. 

It may seem like we’re worrying about things we don’t need to. Like there’s time to figure all that out. Like we just need to go hold our kids tightly and take it one step at a time. But that word — time, it’s limited now. We don’t have that luxury. And we won’t squander what we have left. We aren’t worried. We’re thoughtful and sad and stubbornly prepared to make every day matter.

QUESTION:

If you were almost 10 and could do ANYTHING in the world, what would it be?

Mutation and devastation

 

Today we learned that Judah’s Low Grade JPA tumor has mutated into a very aggressive High Grade Glioblastoma. It is technically a Diffuse Intrinsic Midline Glioma (Dimg). There is no cure. 

Judah looks great. You’d never know he had a cancer rapidly dividing in his brain stem. It is a mercy that he is in such great shape. Because of this, he will be able to start radiation this coming Tuesday. It will be everyday, 5 days a week, for 6 weeks here at St. Jude. It is easier on the body than chemo. And it will help Judah feel better for a while. Unfortunately, the radiation is only a stop gap. Once Judah’s tumor starts growing again, there are no options. We will do our best, with the help of palliative drs, to make him as pain free and comfortable as possible. 

And in the meantime, we will soak up every second of Judah’s good time. We will take trips and laugh and burn his everything into our memory. We will love each other with all we have.

Thank you for your prayers and encouragements. Thank you for sticking in this with us, even though it’s ugly and hard. We are broken. Devastated. There will be no way to mend us without Judah.

I will continue to post here with updates. The majority of the Thackerpack’s memory making will be documented on the blog and instagram (thackerpack.com and IG: thackerpack)

Everything is the same. Everything is different

Brooklyn, Brooklyn take me in.
Are you aware the shape I’m in?
My hands they shake my head it spins.
Ah Brooklyn, Brooklyn take me me in.
Dumbed down and numbed by time and age.
Your dreams they catch the world the cage.
The highway sets the traveler’s stage
All the exits look the same.

To be honest, I never got on the Avett Brothers train. I don’t NOT like them. Just never sought them out. So I have no idea what this song is supposed to be about. But as I was listening to a Prime Station, the above song came on. And some of the words struck a chord. 

I wonder if Jesus sees the shape we are in down here? 

When we got invited to St. Jude we were filled with a renewed hope. And then Friday happened. Judah had a MRI and the news was not what we were expecting. His new tumor is continuing to grow. It has taken up the entire 4th ventricle. The original mass from 5 years ago is also growing. Chemo isn’t working. The neuro oncologist didn’t know if surgery would be an option. Surgery? Biopsy? Radiation? Inhibitors? All were mentioned. 

An appointment with a pediatric neuro surgeon was made. He told us that surgery wasn’t an option. That Judah’s tumor is diffusing and that makes differentiating between healthy brain tissue and excising tumor tissue impossible. He did say he wanted to do a biopsy. That a biopsy would allow St. Jude to sequence his tumor, look for markers and find a more targeted treatment. But what does no surgery mean? It means our options for treatment just got smaller. And the truth is, we never wanted Judah to have to go through surgery again because of how incredibly hard and heart wrenching it was to watch him relearn shaping and speaking his words, taking steps, concentrating on getting basic things down that no kid should have to do twice. But we would do surgery again if it meant he had to option to fight for ‘himself’ back.

 

Radiation oncology consult was yesterday. We went into that meeting feeling so vulnerable and frightened. Lack of factual information can do that to a person. What we had always heard was that because of where Judah’s tumor is (brain stem), radiation would be the last choice. That it was dangerous. That it could cause cognitive deficits. Physical deficits. New cancer later in life. 

I wish I could say that all our fears were assuaged. They were not. If anything, the hypotheticals made sitting in this awful waiting cycle worse. Because now we know, if the biopsy comes back 1 way, those hypotheticals all of a sudden become reality. We are doing our best to set all the information we learned aside. Store it away with all the other information we have learned over the last 10 days. It will still be there when we need it.

Today we were admitted to Le Bonheur Children’s Hospital. Judah will have a CT scan and MRI for precision measuring to prepare for his biopsy surgery tomorrow. While we are here, the Tumor Board at St. Jude is happening. All of their best and brightest minds will be together to review Judah’s case to try to come up with the best course of action to stop Judah’s tumor from growing more. 

The biopsy will happen tomorrow and is scheduled for 7:30 AM. We have been told that this is will not be traumatizing for him. That the surgery will take ~2 hours and that if all goes well, Judah will be off the vent and in his normal room right away. He will have normal recovery from anesthesia; groggy, grumpy, sore throat, and that his head will hurt. But it already hurts more than it should. The surgeon said he should wake up talking and walking etc. And that is such a relief to all of us! Before the biopsy, we decided it would be a good idea to cut Judah’s much loved long hair. Surgeons are not barbers. We know this from last time! Judah was very unhappy about having to have his hair cut off but we gave him the coolest hair cut we could think of, considering her had to have the whole back of his head shaved!

The biopsy results will take about a week. And Judah will be in the hospital for the same amount of time. We spend that time trying to be present and also distract ourselves. Food. Conversations. Movies. Switch playing. Snuggles. Kids being kids.

But we are going into this biopsy already wounded. We aren’t in the best shape…dumbed down and numbed. All the options in front us feel like bad ones. We covet prayers. Over the last 6 months, it has become immensely difficult to find words, any words, to pray. We cannot keep asking for God to show us He cares. Asking Him if He sees our suffering. Asking Him to give us a glimpse of His goodness. Because we’ve been begging. We believe that God is providing for us through our family and community. Moving their hearts to love us. Meals. Finances. Encouragement. And it has been more than we could ever say thank you for. Then we wake at 3AM to Judah screaming in pain. And we go to another Dr and they tell us more and more bad news. And then our 3 year old asks his big brother if he is better yet. Our 5 year old asks when we get to go home so she can see her friends and go to Kindergarten. It is all we can do to keep moving forward. We do our best. Smile and squeeze all our kids and say yes as often as is possible. And then hide when the wracking sobs come. The moment passes. We breathe. Matthew looks at me. There is an understanding and “here-ness” shared between us and we collect ourselves and start over. And I think it’s that “here-ness” that I miss from God. I used to feel His presence so keenly. I could feel his heart for me. For Judah. And could see His love for us in the little everyday things. Even when things were bad with Judah (or anything else), He was with me. But that’s gone. In it’s place is a wretched, broken, emptiness. A constant reminder of just how small and alone we are on this Earth. And I want so badly to keep believing that He isn’t finished with this story. That I can trust Him with my heart. With our son, his future, his life. It feels like too far to go. And it’s not because God hasn’t miraculously healed Judah, though that’s what we long for. It is because we feel abandoned and isolated from our Maker. And we don’t know why?

Where is the God who tells us he loves us and has plans for us? The Good Father, our creator. The mountain mover. The raiser of Lazarus. The silencer of storms. The healer of many. 

I don’t know. I wish I did.

St.Jude journey beings today

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!

The wait

Some nights I go to bed with a gut feeling that something is going to be off in the night. Falling asleep becomes a trial and when, inevitably, the bad thing happens, I’ve had less sleep than I should have had. Matthew and I team up, doing what we each do best. We spend the early, early morning hours comforting and treating Judah, all 3 of us really longing for sleep. And then the bad passes and the 2 littles wake, and our “morning” starts. We spend the day trying to keep upright, all the while, dreading the repetitive nature of our new normal.

We are beyond tired. Beyond frustrated. Beyond sad. 

We are in Nashville to try an find some answers. Judah has an appointment with the infectious disease Dr here at Vanderbilt. And he is getting a spinal tap to look for possible causes of the fevers. Judah has gotten 4 fever/headache episodes in 4 days. This morning, his fever was 104.6. This is exactly why we are wanting the spinal tap. But get this, the anesthesia Dr doesn’t want to do anesthesia on him because he had a fever in the last 24 hrs…even though the spinal tap is being done BECAUSE of the chronic fevers. It feels so ridiculous. Dr. Esbenshade wants it done and has plead his case to the anesthesia Dr. 

We will see.

For now, we do what we have become really good at. We wait. Wait for Drs plans, for blood and urine tests to come back, for  the ok for the spinal tap, for any new clues, for the middle of the night and the next fever, for relief for Judah.

Much love and gratitude from the Thacker Family