Not where we thought we’d be and that’s ok

One month ago today, our family got packed up and headed home from St.Jude. We thought we were going home to LIVE. That Judah was only going to improve and that we would be back in a month for an MRI and to start Judah’s experimental MEK inhibitor treatment. But we were wrong.

When we came here on July 25th, we thought we’d be here for 3 days and stayed 10 weeks. We were wrong then too.

I am a hopeful person. I am optimistic. In fact, I would say I’m drawn to look for the positive in bad situations. I find myself saying, “well at least…” more often than, “of course…”. And I do not like situations where I can’t find the ‘good’ part.

So when Judah started getting minor headaches 3 weeks ago, I chose to look for a less tragic reason than the obvious one: that his tumor was growing again. Were we worried, of course. But we tried not to.

My philosophy is, worrying means you suffer twice. ~Newt Scamander

But after days of minor headaches, he got an terrible one. And it would not go away. We called his Drs at St Jude, who initiated a pain management protocol. We tried all the pain medicines, migraine medicines, fluids, steroids, and nothing touched his pain. After 48hrs, we were told to take him to ETCH for an MRI.

What we learned from that was that Judah’s brain swelling was out of control. On the MRI, we saw NO space. The swelling was pushing on his spinal cord, brain stem, cerebellum, and nerves. The only reason he didn’t have hydrocephalus was because he has a shunt. High dose steroids were administered and Dilaudid was given, which miraculously took his pain away with no other weird side effects!

Matthew was leaving 2 days later for a very important work trip. St Jude decided that since his pain was under control and the steroids were helping, we didn’t need to come right then. But they did want us back as soon as Matthew got home.

We adore his 2 Neuro Oncologists. But more importantly, we trust them. So with frightened hearts, Matthew left for Atlanta and I stayed home, praying nothing happened while he was gone.

And nothing did. And I praised Him for this small mercy. But I also cursed. I screamed and cried. I didn’t sleep. I was so very confused and angry. I still am.

Matthew’s work trip went better than he could have hoped for and he got home a day early, so we contacted Judah’s Drs and headed to Memphis for an undisclosed amount of time. Thankfully, the home we had used before was still open and the family graciously let us move back in.

Our first day back at St Jude, Judah had a St Jude MRI. We waited until the end of the day to find out the results. This time, as soon as the Dr walked in the room he told us the news,  the steroids were working. The swelling was going down. This was encouraging. But Judah had been on steroids for too long already. We needed a new plan. And Judah’s team had 1!

Avastin, the chemo drug Judah had been on before we found out his tumor had transformed, is also used to reduce swelling. It does this by shrinking the vessels in the brain. The Drs tell us they want to start it immediately. When Judah heard, he started to cry. He wanted to go home. And amazingly, the Drs said that was just fine. St Jude is a magical place.

The next day Judah got his first dose of Avastin through his port. The only real concern was his blood pressure. Steroids + Vasoconstrictor = high blood pressure. And Judah’s didn’t disappoint. The next day his blood pressure was 127/91. They redid it. It went up. It was now time to speed taper off the steroids! If his blood pressure continued to stay high, he’d have to go on blood pressure medication. And God knows we don’t need anymore medicines in Judah’s daily regimen.The Drs said they were ok with us checking it and waiting to see how he did once we got him off the steroids.

At our next appt, I asked about the MEK inhibitor. The Drs said they would have it soon but Judah couldn’t start it yet.

WHAT?!?

I started to cry (just a little). I said, but you said it takes 3 months to start working. If we wait until Judah gets off the Avastin (end of December) the MEK won’t start working until March. And that’s the median range for when kids tumor start growing after radiation. They nodded. They knew my fears. They see if everyday.

For those of you with kids with cancer, you will understand the fierce desire to keep your kid on treatment. As long as they are on treatment, you are ‘fighting’. And I did not want to not fight. I told them so. His Drs were so patient. They explained that if Judah has a reaction to the MEK inhibitor, they won’t know if it’s a drug interaction with the Avastin, or the MEK inhibitor itself. And they will have to take him off of the MEK inhibitor. And we really need the MEK inhibitor.

I slouched. Defeated. The worries I try not to let in, crowded my mind. The ‘what ifs’.

While we waited to see how Judah would do tapering off the steroids, we celebrated Halloween at St Jude. Guys, it was more than I could have imagined. Every department dressed up in a theme. And when I say dressed up, these were professional costumes with fully decorated booths. The kids line up and walk (or roll) all over the hospital collecting mountains of candy. And every single one smiled. Magical.

Camilla Kate and Emmett Trick o’ Treated with Rere and Jim, Mikey, Mimi and Papaw. They had a blast.

We found out the next day that the Drs were ok with us going home. We could finish the Avastin at home. As long as all goes well.

And thus far, he has done well. He is off the steroids and has had a second dose of Avastin. His third dose is the Monday before Thanksgiving. He’ll get it every other week for at least 6 wks. And then, fingers crossed, we can start the MEK inhibitor.

Matthew and I are fighting fear with faith. We are surrounding ourselves with the love and support of our family, friends, and community. We are doing the best we can. Struggling. But making it.

PS: it’s very difficult for me to remember to post. I’m sorry.

 

 

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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.

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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. 

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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.

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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?

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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)

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