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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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.

 

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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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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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