"We strain to hear..."

"Happy New Year from the Van Patters. We are thankful for so many things as the year 2014 comes to a close and 2015 begins, not the least of which is that Watts' labs continue to remain cancer-free.
Thank you for your continued prayers and love for our boy (and us)!"

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Just as I was set to post the picture of my cute kids and cheery words yesterday morning, I received a devastating text from Mandy, a dear friend and mother that I met through an Infant ALL support group. Mandy has meant the world to me over the last year and a half. Our boys were diagnosed a month apart and, although she and her family live in Charlotte, we have journeyed through treatment together and have sent each other thousands of texts and have even been able to get together a few times.

She has been my lifeline and the kick-in-the-pants I've needed at times when I've lost myself in cancer woes and anxiety. Her love for Jesus, her optimistic outlook on life, and her encouragement through the ups and downs has been priceless and a sweet gift from the Lord.


 Watts (on left) and Drew (on right) over the summer. 

Yesterday morning I received a text from my dear friend that her sweet boy, Drew, had gone to be Jesus unexpectedly during the night. He had not relapsed but was sick with what they had been thinking was a virus that his immunocompromised body was having some trouble fighting off.

Please pray for Mandy and Wes as they grieve the loss of their son. There are just no words that seem adequate to say but I'll (again) quote Wolterstorff's Lament for a Son:

“How is faith to endure, O God, when you allow all this scraping and tearing on us?
 You have allowed rivers of blood to flow, mountains of suffering to pile up,
sobs to become humanity's song--all without lifting a finger that we could see.
You have allowed bonds of love beyond number to be painfully snapped.
 If you have not abandoned us, explain yourself.

We strain to hear.
But instead of hearing an answer we catch sight of God himself scraped and torn.
 Through our tears we see the tears of God.”

Ashes and Hope

I had the privilege of leading the folks of Hope Chapel in an Ash Wednesday worship service tonight. I wanted to share my opening/welcome words in hopes that you'd be encouraged at this beginning of lent.

Ash Wednesday is about death.

For some, death isn't something we like to think about. It's dark, depressing-- a thought to be avoided. For you, Ash Wednesday can be a beautifully sobor dose of perspective. There is some urgency to God'scall on your life to love him with your whole heart, soul, and mind, and to love your neighbor.

For others, death may seem all to near. Just six hours ago, Hannah and I slid into a pew in a chapel in Winston Salem for the funeral of a 23 month-old toddler named King*, who died of leukemia on Friday. We wept and mourned the inexplicable loss with the people there. This should not be so. Many of you here have had difficult months and years and you feel the reality of death. For you, Ash Wednesday can be a beautifully hopeful reminder that there is MORE. Lent begins with Ashes but ends with Resurrection. Hope prevails. Death has lost its sting.

So wherever you are tonight, welcome. 

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*Hannah also wrote up some thoughts about today....

Today was Baby King's funeral. To say that his funeral was beautiful and honoring would be an understatement. The room was filled with his family, friends, and beloved nurses, and I sat and wept and ached for heaven.

Michael sang the song, Psalm 126, during the service:

Our mouths they were filled, filled with laughter

Our tongues they were loosed, loosed with joy

Restore us, O Lordea

Restore us, O Lord

Although we are weeping

Lord, help us keep sowing

The seeds of Your Kingdom

For the day You will reap them

Your sheaves we will carry

Lord, please do not tarry

All those who sow weeping

Will go out with songs of joy

The nations will say, “He has done great things!”

The nations will sing songs of joy

Restore us, O Lord

Restore us, O Lord

Sadness.

The "king" of Brenner went home to be with the Lord yesterday after a 20 month battle with Infant ALL. While we rejoice that little King is no longer in pain, that he is cancer-free and done forever with needles and treatment and tears, our hearts break for his family and we acknowledge and cry out that this is not as it should be.

This is not as it should be. Come quickly, Lord Jesus.

Upside down.

Cancer has left its mark on me. Some days I'm not sure which way is up and which is down. Simple things feel complicated and I can't seem to remember to brush my teeth. Or check my email. Or switch the laundry. I cry sometimes for no apparent reason but the truth is, there are a million reasons.

7 months in. 12ish weeks from maintenance. The online Infant ALL support group that I am a part of is inundated lately with stories of relapses, mostly during the maintenance phase of treatment. The statistics support this. It is sobering to say the least. Watts looks good, IS good, but the reality that this journey is far from over is always present in my mind.

Where's the balance of recognizing and acknowledging the reality of the situation and not living in fear of what the next year might bring? I don't know. I am trying to learn how to do life again when all of life feels different, when the future is unknown. The future has never been known to me, but now I am living daily in the awareness of how fragile life really is... And how quickly all of life can be turned upside down.

Don't get me wrong, some days I am truly overwhelmed with gratitude for the smallest of things and outpatient life feels almost blissful, but other days, a lot of days lately, I trudge the muck and mire and make it to the end of the day by the skin of my teeth.

PTSD issues from the past 7 months? Possibly. Exhaustion? 100% yes. Trying to figure out how to return to "normal life" when nothing is normal? Confusing as all get out. 

Another Brenner day and rambled thoughts.

Watts is sleeping off a traumatic morning of changing out his NG tube and I'm taking some much needed deep breaths too. Holding my son down as he screams out in fear and pain is very disturbing...even though I remind myself that it is necessary and for his own good and oh! so minor in light of everything else going on in his body. But add on top of that a slow-moving xray technician, having to re-tape the darn thing 5 times, and knowing that there is mucositis in his throat, I am probably going to have some PTSD issues from all of this. Watts, thankfully, will wake up from his nap and hopefully won't remember anything. [NG tube had to be changed because, after a week of super gluing and duck taping it, the leaks could no longer be stopped.]

He's sleeping heavy on my chest now, his breathing deep and raspy as the mucositis continues to heal. I'm listening to the whirling sound of the feeding pump, pumping milk into my boy, accompanying the sporadic ticking of the IV machine. Always tick, tick, ticking. Old episodes of Shark Week are on in the background and the nurses are in and out, starting more antibiotics, administering medications, and waiting on us hand and foot. In the "quiet" moments, I find myself processing, thinking, and trying to recover emotionally.

Watts' blood counts are even lower today (ANC is now at 0...down from 75 yesterday). Which means, more waiting. No known discharge day. More delays to chemo.

We should be on vacation this week. It would have been our first real vacation in a few years and Michael was going to take two full weeks off. I was dying to go to the beach and we would have been there over the 8th, which is my 30th birthday.

Instead we are here. 

There are moments that I feel so overwhelmed... with sadness, with loss, and an indescribable feeling that I am missing out on life. That my little family is in a stagnate place somehow as the rest of the world whizzes by. People travel, go to parties, vacation, sleep in the same bed as their spouse and under the same roof as their babies, and we are here in this tiny room day after day after day.

It isn't true, I know. This life that we are living is not stagnate, but the most intense kind of living, full of pain and questions and completely out of our control. It is a fight of life and death. A battle in a sense that we are waging against the enemy of leukemia. But some of the days are really hard. . . and some of the hours are really long.

Right now I am going to snuggle my boy, watch some more Shark Week re-runs, and pray for a deep abiding peace in the midst of the storm. And contentment in the hardest times. And joy, sweet joy in the moments that are truly beautiful.

PS. I did have a lovely lunch dropped off for me by Debra Morrison. Thank you! Not eating hospital food was a treat!

Mouth sores and anxiety

I can feel the anxiety rising up in my throat, a warm flood of panic that wants to consume me. The day starts seeming impossible, the clouds seem to loom, and I can see no good, no blessings or gifts around me.

I've come to learn during this leukemia marathon that there are two times that I tend to always struggle with fear and anxiety: when I don't get sleep and when Watts is in pain. There are other times too, of course, but those are historically the worst for me. Once again that rings true...

Watts is having a hard time. The mucositis is throughout his mouth and, most likely, all the way down his GI tract. He is drooling out blood (because he can't swallow) and his breath reeks of rotting flesh. We are still home but monitoring him closely and will be readmitted if his pain worsens. I hate, hate, hate this. Throughout this whole process I've been trying to be fully-present and trying to find the beauty in it all, but this? This I would like to fast-forward. It is no, no good.

 I cried over Watts this morning as I was trying to get him down for a nap and I found myself directing my tears and anger towards the Lord. Why? Is it not enough that he has leukemia? Why does he have to feel like this? Are you even watching this? Do you not see this baby? I wept. And in the quiet of that moment, in the honesty of my rage, it struck me---He is weeping too. Both now for the boy that I love and in the past, for his own beaten, tortured son.

He knows the cry of my heart.

Day 4, Birthday eve

I'm waiting on labs to come back to know if we can go home tonight...it's currently 10:15pm, but I don't care. If he has cleared the methotrexate, we are breaking out of here. Today has been rough. Rough physically on Watts with nausea, rashes, mucousitis, and general irritability, and rough on me emotionally. Well, maybe physical for me too since I'm running on 3 hours of sleep.

On the eve of Watts' birthday, I long for things to be different. I want to be home finishing up his birthday cake, wrapping up presents, and putting streamers down the hall. But that is not to be. I'm curled up next to Watts in a hospital bed, smelling the stench of chemo on my sweet boy's skin, and shushing him as he cries out in discomfort in his sleep.

My cry/prayer tonight...

Rock of Ages, when the day seems long
From this labor and this heartache, I have come
The skies will wear out, but you remain the same
Rock of Ages, I praise your name

Rock of Ages, you have brought me near
You have poured out your life-blood, your love, your tears 

To make this stone heart come alive again
Rock of Ages, forgive my sin.

A mama's cry

 

My babies seem confused, angered even as I interact with them. Piper gives me the cold shoulder at bath time and asks for her Gigi (my mom) instead of me. She has gone from spending time with me almost 24/7 to seeing me in increments, like breakfast and play dates and bedtime.

Drawing Watts up close to my chest infuriates him, he fights me off, quieting down only when his papa takes him from me. I feel as if he views me as the one who has betrayed him... The one who pulled away the daily comfort of nursing, routine, and cuddling and thrust him into the world of wires, lights, and tubes. Oh my God, how this hurts!

I wept last night in anger and whispered the words that I've only thought once since this all started: This doesn't seem fair. [I also cried those words when he first started withdrawing from the fentanyl.]

I love, love, love that my babies love their papa and I think that it is so incredibly important for them to form secure attachments to him. After reading Craig Hill's book (The Ancient Paths) awhile back, I was reminded again of the importance of the father's role; that as children grow up, the mother's role needs to decrease (not in love and attention, of course), and the father's role becomes more and more vital as he is a key player to ushering sons and daughters into their masculinity and femininity.

But, even knowing that, I am still sad and am grieving what feels like having my "baby time" with Watts snatched away. And struggling to trust that Piper will adjust to all of this and still know that I love her even though our lives have been turned upside down.

I am thankful this morning for a God who does not turn away from me when I bring him my honesty, my heart cries. No, he delights in my heart and can take the full breadth of my emotions:

13 How long, O Lord? Will you forget me forever?

How long will you hide your face from me?

2 How long must I take counsel in my soul

and have sorrow in my heart all the day?

How long shall my enemy be exalted over me?

3 Consider and answer me, O Lord my God;

alight up my eyes, lest I sleep the sleep of death,

4 lest my enemy say, “I have prevailed over him,”

lest my foes rejoice because I am shaken.

5 But I have trusted in your steadfast love;

my heart shall rejoice in your salvation.

6 I will sing to the Lord,

because he has dealt bountifully with me.

Psalm 13

And he is a God who understands the ache.

Thursday morning update

Oh prayer warriors, can you pray?

We've had a hellacious night as Watts' little body goes through serious drug withdrawal from the sedation meds. He is miserable, writhing, and completely confused as to why he is in pain.

Morphine and methadone have been started but we haven't noticed them helping. We are currently weeping and waiting for the doctor to arrive this morning... All I want right now is for Watts to be comfortable again.

The rain today is a perfect backdrop for what is going on in this hospital room right now.

Out of the PICU, up to the...

Here we are, our home for the next month or so. Today started off encouraging, with our PICU medical crew talking very positively about Watts' progress and recommending that he be moved up to the 9th Floor (which is, if we're speaking plain, the kids cancer floor). Prep went well and Watts seemed relaxed and mostly comfortable breathing on his own and coming off of the heavy sedation and pain killers.

[Let me pause here and say that it was quite sad saying goodbye to the nursing staff in the PICU. They are incredibly skilled, caring, and attentive, and we were constantly amazed by their work ethic and compassion. They tangibly loved Watts above and beyond expectation. We may actually end up being friends with a couple of them!]

We were moved up to Floor 9 around 2pm and shortly after that Watts started becoming more agitated and unable to be comforted. It was strangely similar to the symptoms that actually started all of this. Unable to figure out exactly what was causing the discomfort, the new nurse staff gave him some morphine and began the scheduled blood transfusion (trying to raise his platelets a bit before the new chemo treatment begins tomorrow). Watts continued to get worse with his right eye becoming red and swollen and eyes sort of darting and crossing.  We had been telling our new nurse that this wasn't normal, but at this point we called the main desk and said we needed some help and described what was happening. In about 5 minutes there were 10 or more nurses, med students and residents in the room. They immediately stopped the blood transfusion and morphine, consulted again with our doctors from PICU, and came up with a new plan for getting Watts to feel better. They also determined that a lot of what's happening is basically withdrawal from the sedation and painkillers he's been on. Apparently they weaned him from those medications a little more quickly than they should have. So he's now on methadone to help him transition to be sedation-free.

[Sidebar: one of the scary things about being out of the PICU is that it feels like we're much more "on our own". For the past 9 days we've been in a glass room (literally!) and had all variety of medical staff constantly checking in, with a nurse assigned only to our room. Now, we are making more decisions, watching and determining for ourselves what significant changes are happening with Watts. We are the ones reminding the new staff what's been going on over the past 9 days. Of course there is communication between the departments, but on small matters our responsibility seems to have ramped up a lot.]

Unfortunately, in all the shuffle, his NG tube (which goes in through his nose and down into his stomach) had come untaped and slid partially out. It took 4 excruciating attempts to get a new one in. I think these were some of the hardest moments yet-- having to physically restrain our son while a tube is pushed down his throat and listening to him gag and scream. It's a feeling I wouldn't wish on my worst enemy. It's heart-wrenching to know you'd trade places with your child in an instant, but that it's impossible. It's obscene that a 10 month old should need these sorts of physically and emotionally altering treatments. Watts, our remarkably friendly baby who knows no strangers, is afraid of each new face that approaches. After waking up from 8 days of sedation, his new world is full of people pushing and poking at him, a body that hurts and can't be comforted. It's a cruel brokenness, one that we wish we could take on for him, and we're grieving these losses of innocence. Lord God, have mercy and give us some strength.

grief.

I finally asked how long we were going to be here at Brenner. I've been thinking in chunks of 24 hrs and, honestly, I don't think I have wanted to know. The heme/onc doctor wouldn't give us numbers, but gave us a rough estimate of 5+ weeks if the infection continues to improve, if he doesn't get another infection, if his #s continue to rise. So many ifs. And then for 6-9 months to plan on being in the hospital a lot. a lot.

5 weeks.

Lord have mercy.

Last night felt bleak emotionally. It is so hard to comprehend that, at best, this leukemia journey is going to be years. At worst... I can't think about the worst.

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2+ years of treatment.
5 weeks till possibly going home for the first time.
3-4 weeks before he loses his blond locks.
2-3 days before possibly moving out of ICU.

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All of life has turned upside down.

Perspective

Over the past few days, several of our doctors and nurses and encouraged us to "just think about today".

What needs to be done today?
What are the mountains we are facing today?
What are the small victories today?

We're already realizing the wisdom of this as we go through waves of feeling overwhelmed. For me, especially over the past 24 hours, it seems to take nothing to make me weep. A kind word from a doctor. A new nurse telling us Watts looks handsome in the pictures we have over his bed. Reading Piper a bedtime story with a little boy as the main character. Singing her "Jesus loves the little children" as she falls asleep. Realizing I haven't seen Watts open his eyes in four days. Mustering up some strength in my voice as I walk in the hospital room and say, "Hi buddy, papa's here now". I feel like I've been grieving the losses that are coming our way over the next couple of years and, at the same time, fearing the reality that I don't know what those losses will even be.  

Just think about today.

   Or, put a different way:

Sufficient for the day is its own trouble.

We've felt incredibly loved and supported over the past week, held up and blessed by a community of those near and far. But, Good Lord, how the quiet moments are hard.