Monthly Archives: September 2013

The End Of The Week

I am not sad to see this week end.

The end of chemo is so close that we can practically taste it and the full depth and breadth of all that Chase has been through in the last 14 months seems to settle a little more heavily with each chemo injection.  The week started well with some little victories, but Chase quickly fell under the chemo – getting more tired and more aggressive as the week went on.

I don’t often write about Chase’s aggression…in fact, I can’t think of a time I’ve ever written about it.  It’s a very difficult aspect for me to accept, let alone put into writing.  Chase is a passionate and strong fighter.  I still remember the doctor delivering him and saying “It’s a boy! …and he seems to be holding his head up on his own…wow.”  This, we love.  The pure stubborn defines so much of his cancer fight.  Unfortunately, as it mixes with the brain damage and the treatment toxicity, and is magnified by the constant pain and discomfort, it exhibits itself in screaming, hitting, biting, and kicking.  Frequently.  He’s almost always quick to calm, and is always quickly remorseful, desiring to “make it right” with the person he hurt, showering them with hugs and kisses and telling them he’s sorry and he’ll never do it again, but the raw truth is that the days and weeks when he struggles like this sometimes seem like months and years.  He walks through this intense treatment with more grace and strength than I ever could, but it getting the better of his temper is an honest and almost daily reality and I mention it here so that you can pray for Bob and me as we help him through this.  Pray for us to give him grace while still encouraging him to be quick to hear, slow to speak and slow to anger (James 1:19-20).

Reading with Grandma at 6:00am one morning this week before leaving for the hospital

Reading with Grandma at 6:00am one morning this week before leaving for the hospital

When Chase isn’t being aggressive, he loves interacting with people.  On Monday, as we were waiting in clinic, he saw one of the nurse assistants and after chatting with her for a moment, he informed her that he needed to stay in clinic to see his doctor, but that she could go “find my room and make my bed”.  Luckily, the CNA, besides being an excellent maker of beds, had quite a sense of humor.

This week, I also had a conversation with the amazing woman behind the organization that provided Christmas for our family last year.  She told me that she had gone to the hospital earlier in 2012 and asked them who, in their medical estimation, only had a few months to live and wouldn’t see another Christmas.  Chase was among those named.  Almost a year ago.  I’m in awe of these tiny glimpses of how God completely surpasses what we think we understand to be the course set before us.

But the reality is that facing Chase’s mortality again, and his frustrated aggression, and another week of chemo, and the needs of three other littles have left me physically exhausted and Chase’s on-and-off again elevated temperatures and visibly weakened condition have worn away at what little mental and emotional strength I had left.  I didn’t even want to write because the week was hard and my response to it was often ugly.  I’m staring down a new week beginning and thinking to myself “I barely survived last week! What do you mean there’s another one coming at me?” 

Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint. Isaiah 40:30-31 NIV

This is my answer.  Whatever may pass and whatever lies before me, let me be singing when the evening comes.*

Moment by moment.

*excerpt from 10,000 Reasons; Chase’s favorite song.

Riding the hospital escalator under the whales with Grandpa (lower left corner)

Riding the hospital escalator under the whales with Grandpa (lower left corner)

Of Counts And ECHOs And Little Victories

Thank you so much for your prayers this weekend! We were informed yesterday morning that Chase’s counts had “come back with a vengeance” (ie: his numbers looked really good) and he was admitted for chemo shortly before lunch – residual cold symptoms not withstanding.
Here is a picture from the afternoon…he’s getting another ECHO exam to monitor his heart for chemo damage, but he’s smiling and giving a thumbs up, which I love. Getting an ECHO without screaming is a huge victory for Chase. His skin is so chemo sensitive that the feel of wet or cold is often more than he can handle. The gel used for the exam makes it very difficult for him to be still and stay calm. So proud of him for really working at it yesterday!
And with that, the second to last chemo cycle is well underway.
Moment by moment.

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Two More

Chase’s counts are finally recovering from his last round of chemo!  Yesterday evening, we received word from the hospital that he has been cleared to come in on Monday.  His levels aren’t exactly where they should be, but are very close.  It is our hope that his Monday labs will reveal he’s fully recovered and that he can be admitted for the week.  We don’t hope this because we love chemo, but because Chase only has two chemo cycles left!  …and then he’s done!!

We would so appreciate your prayers as these last rounds are, in many ways, the most difficult.  The protocol doesn’t change, but his body is exhausted and each round seems to take it’s toll quicker and more painfully than the last.

Moment by moment.

My darling Chase

My darling Chase

 

The Beautiful Ugly

“Part of every misery is, so to speak, the misery’s shadow or
reflection: the fact that you don’t merely suffer but have to keep on
thinking about the fact that you suffer.” C.S. Lewis

September is Pediatric Cancer Awareness month.  It’s a time when we find every possible way to say that most cancer babies suffer and many die horribly, and if by some miracle, they escape that terminal diagnosis; they’re often scarred for the rest of their lives in every imaginable way.  To say that there’s not enough research and there’s not enough money and there’s not enough action.  Not nearly enough.  Not ever enough.

It’s almost impossible to turn around this month without having the spectre loom and stare back at you through the eyes of a small child gone long before siblings or school or marriage or children of their own.  In September, this dark, middle-of-the-night thought for the parents of a living cancer child becomes a large and constant shadow as we actively stare into the eye of the storm for a whole month of days.  Oh, it’s there every other day of the year, but in this month of months, we set aside the business and life that crowds it out and stare it down in all it’s wretchedness.

There are many days I’ve wanted to write, but it’s difficult to write about the truly awful moments because there is no easy way to articulate what it feels like to the human heart to restrain the child you bore and swore to protect as hands breach his skin with needles and tubes and he screams and begs you to stop, but you can’t.  There is no easy way to describe the helplessness of walking down a hospital hallway and seeing clusters of white coats and scrubs in huddled consult while family members sob with their heads in their hands and the next week; an empty room, or of watching a three year old being wheeled away from you by an anesthesia team and hearing his cries fighting through the haze of drugs that slow his mind because he won’t remember in an hour, but right now, he knows they’re taking him away and he’s scared even though he’s assured you many times not to worry because he’s going to be brave.  Seared into my brain, these moments and many others like them are so dark that my heart physically hurts and the only true articulation of the emotion is a gut-wrenching scream.

In light of this, is it ever possible to be happy…no, find joy after you hear the words “There’s a large mass“?

I believe with all my heart that it is!  If there is no joy to be found and shared, then there is no purpose in our suffering and we live in needless agony without end.

My ultimate joy is the knowledge that a day is coming when there will be no more tears or pain and death won’t exist anymore.   A day when women won’t cry with empty arms and children won’t know the sound of broken, powerless adult sobs next to their hospital beds.

And until that day of no more, I am given small treasures as I walk through the ugly.  The moment Chase laughs and jokes with his doctors, the time he grabs the nurse’s arm and kisses it, the times I lean down to tuck him in and he tells me he loves me and that I’m his favorite mommy, the moments I watch him walk and talk and run and eat and remember after being told that he may never do those again.  All of these moments are beautiful and undeserved treasures in the midst of the shadows, and sometimes, we even capture them on camera, so that someday, when we wake from this blur, we’ll look back and remember that there were moments of beautiful.

I am not naive.  My taking joy in those moments in no way indicates a lack of understanding of the cancer horror.  My response is not static or stoic.  I feel the pain deeply, but I must choose the joy because there is purpose in our suffering and that is what I pray to continue to seek every day…

Moment by moment.

“For now we see in a mirror dimly, but then face to face. Now I know in part; then I shall know fully, even as I have been fully known.”  1 Corinthians 13:12

Perspective: A Story Of Suffering And Sovereignty

Steve Saint is perhaps best known as the son of Nate Saint, a missionary pilot in Ecuador who, with four others, was killed by Huaorani indians in 1956.  In June of 2012, Saint was injured and partially paralyzed from the neck down – these things I had heard.  What I had not heard is that Steve Saint had a daughter, Stephenie, who died of a massive cerebral hemorrage in the summer of 2000.  I heard this story, told by Saint himself in 2005, just this morning and was so moved by his faith and understanding of who God is that I wanted to share it here.

God Planned My Daughter’s Death
believe God planned my daughter’s death. In the years prior to her death, people started asking me to go around and speak, and I realized that there was a deficiency in my heart and life: I could not see the world the way God does. Oh, be careful what you pray for. I prayed and begged God and told Ginny, “I can’t keep doing this. I go out and I’m speaking from my head to people and it doesn’t work. I can’t keep going. I can’t speak unless I feel the passion of this.” And so I started praying, “God, please, please let me have your heart for the hurting world out there. I see it, and I empathize a little bit but I don’t have a passion for it.” Now, don’t overrate this. Perhaps a lot of you struggle with the same thing. I just couldn’t keep going and talking about what I had seen God do without a passion to share it. And I had no idea if God would give me such a passion or how he would do it. I’m more mechanical; that’s what I do well. I fly; it just comes, it’s in the genes, I don’t have to figure it out—it’s just there. But passion is another story, so I begged God to let me see his heart.

We have an idea that if we do what God wants us to do, then he owes us to take the suffering away. I believed that; I don’t believe that anymore.

Ginny and I had three boys and then we finally had a little girl. I made her promise me that she’d never grow up; she broke her promise and went away to college. And then a time of suffering came because Youth for Christ asked Stephenie, who could play the piano beautifully as well as the bass guitar, to travel around the world for a year with one of their groups sharing the gospel. And you know what? It wasn’t worth it to me; I wanted my daughter home. I knew that some day she would probably meet a boy and go off. She was tall and slim, and in my eyes, beautiful. She was Ginny’s bosom friend. She was our baby. She started traveling around the world, and it was a painful year. But finally the year was over and she was coming home. Ginny and I met her at the Orlando airport. Grandfather Mincaye was there too. We had made him a sign to hold up, Welcome Home, Stephenie, but he couldn’t read so he held it upside down. He was jumping around, big holes in his ears, wearing a feather headdress. He wasn’t blending! Stephenie came and saw him and tried to pretend that she didn’t see us, but Mincaye went up and grabbed her and started jumping around with her. Then we headed out for a welcome home party—it was a joyous time.

Later, I passed Stephenie in the hall, and she just leaned on me and said, “Pop, I love you.” I thought: God, just beam me up right now. Let’s go at the peak. Does it get any better than this? All of our children are following you, and Stephenie is home. And Ginny and I—we’ve had a twenty-seven-year honeymoon. Let’s just quit right now.

A while later, Ginny said, “Steve, Stephenie’s back in her room. Let’s go back and be with her.” So we ditched everyone else and went back. Stephenie had a headache and asked me to pray for her. Ginny sat on the bed and held Stephenie, and I put my arms around those two girls whom I loved with all my heart, and I started praying.

While I was praying, Stephenie had a massive cerebral hemorrhage. We rushed to the hospital. I rode in the ambulance while our son Jaime and Ginny and Mincaye followed us in the car. Grandfather Mincaye had never seen this type of vehicle with the flashing lights, didn’t understand why strangers had rushed into the house and grabbed Stephenie and hurried off with her. Now he saw her at the hospital, lying on a gurney with a tube down her throat and needles in her arm, and he grabbed me and said, “Who did this to her?” And I saw a look on his face that I’d seen before, and I knew that he’d be willing to kill again to save this granddaughter whom he loved.

I didn’t know what to say. “I don’t know, Mincaye. Nobody is doing this.”

And just like that, this savage from the jungles grabbed me again and said, “Babae, don’t you see?”

No, I didn’t see. My heart was absolutely tearing apart; I didn’t know what was going on.
He said, “Babae, Babae, now I see it well. Don’t you see? God himself is doing this.”
And I thought, what are you saying?

Mincaye started reaching out to all the people in the emergency room, saying, “People, people, don’t you see? God, loving Star, he’s taking her to live with him.” And he said, “Look at me, I’m an old man; pretty soon I’m going to die too, and I’m going there.” Then he said, with a pleading look on his face, “Please, please, won’t you follow God’s trail, too? Coming to God’s place, Star and I will be waiting there to welcome you.”

Why is it that we want every chapter to be good when God promises only that in the last chapter he will make all the other chapters make sense, and he doesn’t promise we’ll see that last chapter here? When Stephenie was dying, the doctor said, “There’s no hope for recovery from an injury like this.” I realized that this was either the time to lose my faith or an opportunity to show the God who gave his only Son to die for my sin that I love and trust him. And then I watched. I watched my sweet wife accept this as God’s will and God’s plan. And you know what God has done through this? He changed my heart. He broke it. He shredded it. And in the process he helped me see what he sees. I thought the worst thing that could happen in life was that people would go into a Christ-less eternity. There’s something worse than that. It is that our loving heavenly Father, the God and Creator of the universe, is being separated every day from those he desperately loves, and he will never be reunited with them again if what this Book says is right.

Moment by moment.

[Special thanks to Pastor Chris McGarvey of Bethel Baptist Church, Delaware for sharing this in his recent series on suffering.  Text courtesy of Grace for Sinners.  You will find the entirety of Steve Saint’s message on Desiring God under the 2005 conference series.]

August, Part II

Our August continued…
If you missed part I, you can catch up here.
August 18:  “Last night, Chase suddenly started shaking (as if he had the chills) and within half an hour, his temperature went from 99.1 to 102.1.  It was a scary moment for our family.  He was triaged at a local hospital and was released around midnight after an antibiotic since his blood levels were so stable.  We were able to come home and sleep for a few hours before both the local hospital and Lurie started calling…Chase’s blood cultures had grown a bacteria and quickly.  He was admitted to Lurie several hours ago and we are waiting to determine the plan for treatment.  Because of this, his port surgery (scheduled for tomorrow morning) will probably have to wait.  We are thankful to be here and we know this is exactly where we are supposed to be and Chase is overall in a pretty cheerful mood, but we are all experiencing a certain level of “burnout” from all the back and forth and Bob and I are very concerned about all the infections and what role, as his caregivers, we might be playing in them.  Praying for wisdom all around.”
What do you do in the ER at 9:45pm?  Why, play paper airplanes, of course...

What do you do in the ER at 9:45pm? Why, play paper airplanes, of course…

This particular fever and admission were especially difficult as we were still at home and with the other kids when the worst of it really hit him.  Chase has never been that bad at home before and they were very afraid.  For them, the last time they witnessed Chase shaking, it was a seizure and it changed their lives forever.  We were able to talk about it with them and cry a little too.  That’s one of the reasons Bob took the above picture – we needed them to see Chase after his dose of Tylenol and see him sitting up and being Chase again.  We didn’t want their last memory of that night to be one of him shaking uncontrollably.

On August 21, after days of waiting for negative cultures and many, many discusssions of what could be causing the continued infections, we were able to bring Chase home again on antibiotics.

Uncle Trevor, Grandpa, Mom and Chase all mask-up for a cap change because we're going home!

Uncle Trevor, Grandpa, Mom and Chase all mask-up for a cap change because we’re going home!

At this time, there is no clear reason for his multiple infections, but the constant use of his line (with his IV nutrition) and the exhaustion of his body after a year of chemo are considered to play a big part.  Whatever the cause, we were very blessed by a almost a week at home before going back – this time; a planned visit.

On Thursday, August 29, Chase went into the OR for his 8th central line.  Eight.  During the surgery, the doctors removed the PICC line in his arm and did a spinal tap to check his spinal fluid for cancer cells.  After 2+ hours in surgery, we learned that there had been some slight problems with the new port, and the attending surgeon later told us that she had instructed the team to stay in the room – that nobody left until the port was fixed because Chase really needed this line.  We were so thankful for her persistence and detail as a lack of resolution would have meant Chase going back into surgery the next morning to repair the damage.

August 28

Late Thursday night, Chase and Aunt Carrie celebrate the loss of the PICC and the successful port surgery.

After surgery, Chase was admitted to the hospital for chemo – his first dose since the end of July – the longest chemo break he’s had since radiation ended.  He successfully completed the round and as the last hours of August faded into September; began the fighting and healing from the poison with a five hour packed red blood cell transfusion.

And so ended August.

Moment by moment.

“But they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and ot be weary; they shall walk and not faint.”  Isaiah 40:31

August, Part I

August has been …interesting.  I actually find it very hard to define.  Chase has been in the hospital more than he’s been out of it and there have been what feel like many complications to an already difficult chemo plan.   I’ve had very little time to blog, but I have had moments to post brief Facebook updates from my phone.

August 3: “Its another ‘How many hours were we home?’ day as we made it four hours out of finishing the final dose of chemo for this cycle before Chase spiked a fever. As I write, we are sitting in the ER waiting for lab results and a plan of action. Chase is doing so, so well right now.  Despite a ridiculously long week of chemo, he’s being so kind and sweet spirited.  That in and of itself is a huge answer to prayer.  More updates soon.”

Within a few hours of this post, we were able to come home as Chase’s vitals and labs were stable, but it didn’t last long…

August 4:  “Chase managed to stay out of the ER for only about 24 hours this time. We got a call yesterday evening (Saturday) that the blood drawn from Friday night had grown a bacteria.  He was finally admitted to the hospital around midnight last night to pursue a course of treatment.  In addition to the medicine that runs over two hours of every six, they did a peripheral blood draw (not from his port) to try and determine if the port is the problem – which could mean surgery to remove/replace the port this week.  Please pray for Chase and for Bob and I as well. Chase is weak and we are weary.”  August 4

August 5:  “As of about noon today, the cultures taken in the ER last night had yet to grow anything, so they are keeping Chase tonight to see how things unfold.  If a bacteria grows, there is a very strong possibility that he will go through surgery to remove the port.  We were exhausted today, but were so blessed through some unexpected visits: Chase’s Aunt Meg, baby Matthew’s family, dear friends from church (who brought prayer and chocolate), and  Zeke’s family (another cancer friend), who brought us a wonderful homemade dinner! Being admitted has been discouraging, but we have seen some amazing protections in it…for instance: labs showed that Chase’s hemoglobin was quite low and he received a transfusion overnight.  If Chase hadn’t come to the ER, we wouldn’t have had labs until Monday and his hemoglobin would have been very (maybe even dangerously) low. God is good. Please continue to pray…for Chase; also for darling Matthew.”
Pre-op exam

Pre-op exam

“A consensus has been reached and it looks like Chase is facing surgery in the morning (pending surgical clearance and his ECHO results).  For Chase this will be the 7th access surgery and the 15th placement, removal or repair to an access line. Incredibly, he has never purposefully pulled out a line! Slightly overwhelmed by yet another line (as they intend to place a PICC in his arm) and another surgery on this little boy, but Chase just informed me that Grammie, Mommy, Daddy, and Jesus will all be with him and that he will be so brave.”
Saying that we were “slightly overwhelmed” may have been a slight understatement.  As we went Chase into surgery, I wept.  This was absolutely the right decision to remove the infected port, yet somehow, each time I watch our wide-eyed child being wheeled out and hear the words “Don’t worry.  We’ll take good care of him.“, it gets harder, not easier.  Regardless of our emotions in the moment, on Tuesday, August 6, Chase went into surgery and the infected port was removed.
August 7:  “This boy is a force to be reckoned with!  He has been up and very active this morning despite post-surgery soreness, one hand bound in an IV, very low counts, and exhaustion.  I wish I had a picture of Chase, wrapped in his tiger surgery gown, peddling a big wheel tricycle (me pushing the IV pole behind him) bursting through a circle of doctors on rounds and yelling: “Gentlemen, start your engines!!” As of right now, the IV needs to stay in his hand for at least another day while he continues antibiotics and hopefully recovers from chemo.  As early as tomorrow afternoon or sometime Friday, he may go back into surgery to place a PICC line in his arm – which would allow us to go home while he more fully recovers.  One of the hardest moments this morning was his lab draw.  Without a port or central line, they had to stick him with a needle.  This will happen again tomorrow and every other time they need blood until he has another PICC or port.  A necessary evil, but so painful to watch.  He is being so brave and Bob and I watch him growing and maturing in so many ways around all these circumstances.”
This is what Chase's lab draw looks like without a central line.  For many kids, blood has to be drawn every day and for some, many times a day.  This is why we love central lines.

This is what Chase’s lab draw looks like without a central line. For many kids, blood has to be drawn every day and for some, many times a day. This is why we love central lines.

During the few days without a central line, Chase couldn’t have his regular nutrition and we could see him becoming increasingly gaunt.  This was hard to watch, but the doctors did everything they could to “boost” him and Chase continued to be so sweet, despite rough days and nights.

Smiling despite the surgery and weariness

Smiling despite the surgery and weariness

On Friday, August 9, Chase was taken into surgery again for a PICC line.  He was thrilled to be losing the IV in his hand, but scared to be going for another “nap”.  I wished in those moments that I could just tear him out of his bed and carry him far away from all the pain and sadness, but again, felt peace in the moment that we were indeed doing the right thing for him and were so thankful for our friend Jen being in the operating room with him.

August 10:  “We first met Jen through mutual friends after Chase’s initial surgery.  She has become an incredibly special person to us – often caring for Chase through some of his hardest days/procedures.  We were so thankful to be with her yesterday!  Chase was very sad about going back under anesthesia, but informed me (with tears in his eyes): ‘Mom, do not worry for me, because I will be so brave, okay?’ There are no words to describe the heart of this child.  Blessed by him at every turn.  Thank you all for your continued prayer.  A PICC line was successfully placed and after several hours of post-procedure observation, we were able to come home!  #nomoreneedles
Chase with surgical nurse Jen in pre-op for his second line procedure in a week.

Chase with surgical nurse Jen in pre-op for his second line procedure in a week.

After surgery, we had a few days off from the hospital.  Chase’s labs remained stable, but Bob and I asked for a one week extension on chemo for a variety of reasons, not the least of which was that Chase just didn’t seem as physically recovered as he should be despite his good lab numbers…
Moment by moment.
[Watch for part II of our August blog coming later this week…]