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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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!

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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.

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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!

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July 3rd and remembering

What comes to mind when you think 4th of July? Traditions? Places? People? Fireworks? BBQ? For us, that question is simple. It is the holiday weekend when everything we knew about anything changed. The weekend all the fun plans went out the window. The race we had planned to run as a family. The sibling time staying up late movie-watching. The lake time with Dad. The yard games. The food Mom would prepare for us. The weekend we learned who our people were. Who our God was. It was the weekend we learned that Judah had a brain tumor. 

Tuesday, sitting on the porch at my parents home, looking at the lake, my older sister said, “5 yrs ago today”. That’s all she said. We all knew what she was referring to. Because for us, the 4th of July holiday is a harsh reminder that we are not in control and cancer is indiscriminate.

Judah got 2 fevers around the 4th weekend. He is getting chemo today. Needless to say, we didn’t need a reminder that Judah is battling brain cancer. And yet, Judah was present throughout our 3 days at my folks. He played the Ninentdo Switch with his cousins, teaching them to play his favorite game (Mario + Rabbids Kingdom Battle) and learning to play theirs (Fortnite). He watched Little Einstein’s (Pat Pat😂) with his Emmett and Stella. He came out for the fireworks, which he has never really done, and loved every second of the booms and lights. 

As I watched on, in awe of this kid who has sensitivity to loud sounds and has an acute memory for negative experiences, and thanked God for him. For the warrior He made Judah from the beginning. For the memory, now burned into my memory,  of my husband guarding and helping Judah assist him with fireworks. For my 4 oldest nephews who have never stopped stepping into the akward spaces with Judah to join him, encourage him, and accept him. For siblings who sit in the muck with us and play cards, cracking jokes, and lifting our collective spirits. For parents who help with it all without a smidge of martyrdom or jealousy.  For the sunshine and water and great books. For our 2 beautiful younger kids who are navigating Judah’s cancer better than I ever imagined while unknowingly wrapping up my wounded guilty-mom-heart with their smiles and requests for stories and snuggles. 

I have floundered the last 3 weeks. I have battled shame and disgust. I’ve been both bound up and emotional. I have been manic about tasks until I am no longer able to function and all the things fall to the wayside. My people love me anyway. But as I spin, my thoughts latch to the idea that I can wrest control from this cancer. And when I have enforced my control on all the moveable pieces in my world, making us all miserable, Judah still wakes in the middle of the night sick. His drs still don’t have answers. Matthew and I still have no peace or deep sleep. Because the idea of control is a lie. There is no control. There is only being confident in God’s faithfulness. And then moving, carrying all the swirling doubts if necessary, in the direction of the of the One who fights for us and goes before us. Every ‘yes’ and every step is progress.

The song giving me life this week is Oxygen by Stephany Gretzinger. A bit of it goes:

          Sometimes my very best

           Is only my weakest yes

          You see strength in every

           movement.

           Baby steps and short breaths

           Anything is progress

           You sustain my every moment

~Wendi

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long weekend and plans to fatten Judah up

Family can make the hard days seem less hard.
Matthew and I took  short trip to Washington, DC and while we were gone, Mimi and Papaw, Mumzy and Papa, and Aunt Bam, Uncle Josh, Marshall, Eli, Gabe, and Stella entertained and loved on our 3 kids. All 3 got the love and attention they crave when there are plenty of adults to go around.  1 in particular needed a bit more tending to than the others.
Judah.
When Matthew and I got back from our trip, we couldn’t wait to hug our kids. We just wanted to give our babies a big hug. When we pulled up to Mumzy and Papa’s house, Emmett and Camilla Kate ran out to greet us. We wrap them up and old them how much we missed them. I looked up from my little girl’s head and saw Judah, sitting not 3 steps from the front door. And it was all I could do to not cry. I gently scooped him up an carried him in the house. Sitting in the wing back, my arms enfolding Judah, I saw a version of him I have never seen. Not in the year leading up to finding our then 4 yr olds brainstem tumor. Not in the 14 months of chemo he suffered through from 5-6 years old. He looked like a ghost of himself. Heavy bags under his eyes, frail, skinny body. Eyes spacey and sad. And he was tired. so tired.
He stayed in my lap for half and hr. Just resting his head on my shoulder, his hand in mine.
Over then next couple of hrs Matthew and I got the run down on how he had been feeling while we were gone. The jist was, not good. He had begun looking bad on Saturday night, and on Sunday he woke in bad shape. They told us that Sunday he basically moved from the the floor to the couch to floor. He ate nothing. He had no energy or strength. He could not keep anything in his belly even if he wanted to eat. Monday he continued to feel the same way. And it was a holiday. We talked about taking him to the ER.  With 2 drs in the house, and an attentive nurse a text away, we had plenty of eyes/ears on his health. The consensus was as long as he is staying hydrated, we could wait until he morning. The night was long. Matthew stayed up with him most of the night, praying over him, watching him breath, helping him to the bathroom.
At 9 AM, I called Judah’s Dr she said she wanted to see him. At 12:30 Judah and I got in the van and headed to ETCH Oncology Clinic to see what could be done for him. Thankfully, he was looking a bit better. He had more color in his face. He didn’t have the energy to walk to the clinic so I carried him. However, right before the nurse came back to get us, he decided he wanted to walk to his room himself. He walked as if he was  following a zig zag line, not staggering but certainly not straight. But I decided when we first found out about his tumor regrowth that I was going to allow him the independence to do and speak for himself as much as he wanted. So I kept my distance, keeping control of my face so he didn’t see worry. 
A couple of hours later, after accessing, blood draws, meds to help stop the diarrhea, and iv fluids, we discovered that, other than typical low labs associated with 48 hours or diarrhea, his labs looked ok. Dr Spiller came in to talk with us. I adore how she begin every visit by talking to Judah. He is her patient after all! She cares so deeply about how he feels, what he has to say, and uses the most friendly and unpatronizing voice each time she address him.
Dr. Spiller: Judah, how are you feeling?
Judah: good
Dr. Spiller: Judah, this isn’t what good feels like. This is what bad feels like.
But honestly that is just how Judah is. 9 times out of 10 the kids will tell you he feels good or is good, even when you KNOW he isn’t. he is compliant and sweet and has a difficult time saying things that may upset ‘his people’. This isn’t super helpful when we, his parents or drs, ask him to tell us how he feels. Or identify what hurts. Or even tell us when he has been sick. He doesn’t see it as lying. He sees it as protecting himself and those he loves from discomfort. I love that about him. It is also scary at times though.
 After Dr. Spiller did her exam, we went out in the hall to talk about his weight, nausea, and the need for a feeding tube. She agreed that Judah needed a feeding tube put in asap and wasn’t opposed to a G-Tube instead a NG-Tube. The problems that Dr. Esbenshade described are real. But she said those problems (not healing and getting infected etc) are more common when people are getting chemo every day for long periods of time. When their bodies don’t have time for the blood counts to rebound. But she said that Judah isn’t in that boat. We went over the pros and cons of surgery verses no surgery and in the most lovely way, left the decision up to us. Judah does not want an NG-Tube. He doesn’t want surgery either. But what he wants most, is to just be Judah. And the G-Tube allows him to hide the feeding tube.
We got home around dinner time, and Judah fell into a great rhythm with his cousins. The fluids did him so much good. Over the next couple of days, Judah did much better, eating and drinking, swimming and playing Wii. He and his siblings and cousins lived it up! And the adults had some much needed connection time. Being seen by your people is one of the great joys of being alive. I long for it and got an overflowing portion.
Judah’s surgery will be Wednesday at noon. He will have to stay for 2 days. And then he will be able to get the nutrition he needs to fatten him up. What a wonderful day that will be!
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Orange and White Game and fun with friends!

The Thacker’s got to take 2 of our favorite families with us to the sky box for the University of Tennessee Football Team’s Orange and White Game. I was nervous about how Judah would feel after chemo, knowing it would be a long day. But he did great!

It didn’t hurt that his favorite 2 people were with him. Both so thoughtful and sensitive to what he needs. He truly is so blessed to have these 2 amazing kiddos as his bffs! Listening to Berkley (whose parents are Bama/Auburn fans) cheer “Go Orange Team! Go White Team!” was a highlight for sure. That and seeing Berkley and Maddie in Tennessee orange of course! Lucas and Felicity fit right in with Berkley and Maddie. Lucas stuck right by Judah’s side, which I find to be one of the most endearing and Spirit filled actions. That kid is special!


We ate great food, the kids had about 3 ice creams each and a bunch of popcorn, and we adults had a great time just being together in a great venue. Neyland Stadium is fantastic!

Also, I totally geeked out when I saw Grant Williams in the main area. I was so thrilled that he was such a kind guy. he signed Judah’s popcorn box and took a picture with him! He didn’t have to do that but I am so grateful he did! Go Vols!

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Judah becomes a grumpy teenager

by: Cara McMillin

Today Judah woke up as a grumpy teenager.  He was quick with sharp toned one word answers, mean to his parents and siblings, and generally emotional.  By lunchtime they hadn’t done any school work and his mood had not improved.  Then this happened:   *Cricket is Camilla Kate

Judah to Cricket: You are as useless as purple Pokémons!”

Cricket: No I’m not! I’m bright and useful! (While crying)

Judah: Who cares what you think.

Wendi: Ummm I’m not sure how useless purple Pokémons are but Cricket is right, she is bright and useful and you will not put people down to make yourself feel better. Your tongue is powerful. It has the power to heal and break. What is Proverbs 12:18?

Judah: (insert grumpy teenage voice) “Thoughtless words cut like swords, but the tongue of a wise person brings healing.”

Wendi: So I want you to think of 2 adjectives that describe your sister and heal her.

Judah: (pause for 10 mins) Funny and playful, maybe.

Wendi: Great. Go tell her that. And on the way think of a Pokémon that is funny and playful and tell her that she is like that!

Judah: Cricket you are funny and playful. Not useless. Like a Pink Pokémon not a purple one. (Now he’s crying).

The truth is in him and it will win out in the end.  As of now no school work has been done and he is asleep.  On the plus side Wendi is taking the chance to spend some sweet one on one time with Camilla Kate and a new phrase has been born, “You really purple Pokémoned that one!”

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After 5 great yrs, Judah’s tumor has started growing again…

At Judah’s MRI in February there was a new area of enhancement (an area where the contrast agent glows on an MRI) around his tumor. At the time, the doctor said it was an unlikely, but possible sign of growth starting up again and that we should scan again in 3 months but watch him closely for new symptoms. About 3 weeks ago, Judah woke up in the middle of the night with a headache and a fever. We gave him tylenol and put him back to bed. He seemed perfectly fine the next day so we didn’t worry about it much. Then, for the next two weeks, every 48-72 hours the headache and fever would return. By about the 3rd headache, we were calling doctors trying to figure out what was going on. The oncologist said the cyclic nature of the fevers didn’t jive with the location of his tumor, so he thought it was some kind of infection. The neurologist said that without other symptoms, such as lethargy or vomiting, it was unlikely that it was a shunt infection or malfunction. The headaches continued, as did the frustrating conversations with doctors who didn’t think it was a problem and didn’t want to do anything about it. Finally, on Monday of last week we took him to our pediatrician who thought it best to run some blood tests. The normal infection and virus tests were all negative, but Judah’s white blood cell count was more than 3 times what a normal healthy persons would be. “Maybe his cancer team will listen to us now” we thought, but it still took 3 more phone calls and a strongly worded email before they agreed to move up his MRI.

We drove to Nashville Wednesday night, had the MRI on Thursday morning, then back to the oncologist on Friday. We prayed a confusing prayer that begged on the one hand for the MRI to show no growth, but on the other for *something* to show us what’s going on so we could stop it. We got the latter. Judah’s tumor has begun to grow again. Thankfully the mass that is intrinsic to this brain stem (i.e. inside the good brain tissue) seems to be stable, but a small new mass has begun on the outside edge of the old tumor. It grew from a tiny line of enhancement to a 1.3cm diameter mass in two months’ time. I shudder to think how big it might have been had we waited the whole extra month until his scheduled scan. The doctor doesn’t think that surgery is necessary at the moment, but we go back to Nashville on Monday for them to put his portacath back in, thenTuesday morning to start his second round of year-long chemotherapy. We’ll be using a different therapy this time, the theory being that the previous regiment, though effective, failed to fully kill the cancer so perhaps a different type will. There are pros and cons to the new regiment. It’s supposed to be less destructive to his blood counts, so less chance of serious infection and hopefully he won’t catch every cold he comes within a mile of. He only has to have therapy every two weeks instead of weekly, but the infusions take longer so Judah will be in the clinic for 2 to 3 hours every time. This therapy restricts the growth of blood vessels so it’s possible the tumor will actually shrink somewhat while on this therapy, but that same restriction carries an increased risk of things like internal bleeding and bowel perforation. I sincerely hope none of you ever have to read the patient education literature that comes with these drugs. It causes the mind a unique kind of distress when the doctors are saying we need to give your child this medicine to save his life but the warning labels list at least 40 different ways the medicine itself could kill him.

Jesus encouraged us to pray for specifics. So we’d ask you to specifically pray that this chemo regiment is immediately effective in stopping the tumor growth and relieving Judah’s headaches. We’d ask that you pray that the side effects from the chemo are few and mild in nature. That on his follow up scan in 6 weeks it is really obvious that the growth has ceased and possibly even that the tumor has shrunk. That Judah is able to withstand physically, emotionally, and spiritually this grueling year of pain and frustrations. That Wendi and I are able to withstand the same. That this chemo regiment is definitively and permanently effective for stopping Judah’s tumor from growing. And specifically for Wendi and I, I’d ask that you pray for a strengthening in faith, hope, and desire for God. I know, intellectually, that ‘why’ is never the right question for God. He won’t answer it, and even if He did, I know I couldn’t understand it. But that doesn’t stop the voice from my heart from asking why. Knowing it’s misdirected doesn’t stop the resentment that rises up when I’m lying awake with fear and anxiety. So we need God’s good to show powerfully through the cracks in the evil that veils this world. And finally I’d ask that you pray for all those who are committed to pray for Judah, including Wendi and I, to maintain that commitment. The passion for everything fades over time, especially when things seem good, and this thing is going to need some long term, committed prayer to overcome.

Our sincere thanks to all of you for your years of love and continued support of our family.

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Judah’s Home!

We packed up and left Nashville this morning about 10:30 and now we’re home! Judah’s curled up on the couch playing with the iPad and seems to be doing great. He hasn’t experienced any nausea yet from the chemo but I’m sure there will be more of that with more treatments. For now we’re all happy and comfy back in our own home.
Want to say thank you to all the wonderful people who came and cleaned our house, mowed our lawn, stocked our fridge, and the hundred other little things y’all have done to love on us! We appreciate you so much!
And an extra special thanks to Josh, Brandi and the Kellett boys for feeding and sheltering us for a whole month. We couldn’t have survived without you!
Thanks to all the prayer warriors out there. Keep praying for Judah. We’ve got a year left of his chemo treatment and there are sure to be some hard times.

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