Wednesday, January 21, 2015

Half birthday, little rascal, and update.

Yesterday was Watts' half birthday and we celebrated with sweet treats (which our noodle boy didn't eat a bite of) and a park trip on what seemed like the most gorgeous day of the year to date. We celebrate half birthdays... just as we try to celebrate every little thing these days.

Other birthday celebrations:
6 months old, pre-diagnosis and before we started celebrated half birthdays.
Watts' first birthday. He was so very sick this day.
Watts' 1 1/2 birthday. 

Watts' 2nd birthday (and Piper's 4th).

What a gift to celebrate our little warrior boy! A little bit about him: He loves all things trucks, cars, and planes. He loves scary things, loud things, and gross things. He loves to dance, sing, and play the guitar and piano. He likes to dress like Papa (Michael) and "Taco" (his uncle, Charlie). He is talking up a storm and we love to hear his little brain thinking about about things.

He is also a little rascal these days. His goal, on most days is to terrorize Piper. He can do this a number of different ways but one of his main tactics is the age-old favorite of mimicking. Or maybe it's arguing? I'm not really sure. Piper will say that her favorite characters on Paw Patrol are Everest and Sky to which Watts will respond, "My favorites are Everest and Sky!" And then Piper falls apart. The thing is that they are not Watts' favorites...he really is only saying it to annoy Piper. So, basically, it has begun. The whole younger-sibling-terrorizing-the-older-sibling thing. I did it to my older brother so I am now paying for it with my offspring... that's how it works, right? He also bit Piper till he drew blood yesterday. Just like I use to do.

Thankfully, Piper is forgiving and Watts can be a good playmate, so there are many beautiful moments of playing and affection between the two. Piper is always asking him for hugs and snuggles and he is sometimes obliging. We are so thankful for this little rascal and these normal, simple sibling interactions. Although sometimes they drive us crazy, we find ourselves humble with gratitude at the end of each day.

Watts continues to do well in treatment. We are in the middle of a couple of weeks of Mercaptopurine (6mp) and will go back to Brenner on the 26th for a lumbar puncture (chemo in his spinal fluid), Vincristine (through his port), labs and a doctor's appt, and possibly a transfusion of IVIG. If I did my calculations correctly, this will be his second to last lumbar puncture. Lord willing.

Watts' appetite continues to be hit-or-miss, but, as one of his doctors said last week, "It is what it is right now." Watts is getting sufficient enough calories in him to not need intervention and this will hopefully change once he is off treatment. His periods of nausea and loss of appetite tend to be around steroid weeks and for 24-48 hrs after his weekly PO Methotrexate that he gets every Monday.
In addition to nausea, Watts tends to get drowsy on the 6mp and will sleep for 4+ hours if I let him. I don't, most days, because this inevitably backfires the next morning.

His labs have all been right where our team wants them, there have been no signs of relapse, and he hasn't needed any transfusions except for almost monthly IVIG transfusions to help boost his compromised immune system. We are thankful, and nervous, and thankful.

Thank you for the continued prayers and support of our boy. We are grateful and do not take it for granted.

Monday, January 12, 2015

A rainy day.

[I (Hannah) wrote this a couple weeks and forgot to post it.]

The rain came down heavy this morning as I drove the familiar drive to Winston. Rainy drives on Hwy 40 always remind me of the very first drive, the one in the ambulance with me in the front seat and Watts in the back, being worked on by the paramedics. They would murmur words I couldn't hear to each other but would periodically quip to me that he was doing "just great". I didn't believe them. It was some of the hardest and longest minutes of my life when I couldn't see my son and I was alone in silence. And I didn't know that the worse was yet to come. I didn't know that he would begin to swell and that he would struggle for breath in the blur of the Brenner ICU, that his little 10 month old body would begin to go into septic shock and that I would have to fight to keep a hold of his hand because there would be so many doctors and nurses in the room. I didn't know all that then, or I might have broken in two.

It was actually sunny and beautiful that May day but I cried so hard that I keep remembering it as a dark and stormy day. Just like today.

Watts sang in the backseat as we drove to his appointment this morning. He bobbed his curly head of new hair to the music and pointed out trucks that we passed on the road. A heavy fog covered the downtown buildings of Winston and the rain pounded our windshield. And then, just as the tears started to come in my own eyes as my mind lingered on old memories, a small bird, perhaps a sparrow, broke through the clouds and swooped across my view. His eye is on the sparrow, I remembered, and I know He watches me. And I was reminded again in that moment of how He loves me and my little boy. Every step of this cancer journey I've known this truth with every fiber of my being.

We've come so far and yet we have so far to go. We are so happy with where Watts is and how is doing. He is developing right on track and has remained mostly healthy and out of the hospital since starting maintenance. But every day we watch him. Every day we think of cancer, we treat for cancer, we talk of cancer. We look for bruises, for lethargic behavior, for fevers... We hold our breath for labs and count down the days till treatment ends. And not in excitement but with dread. We hate the toxic chemo but also never want it to end. 

Oh Lord, this cancer journey reminds me of our earthly journey. Our time here on earth is strewed with brokenness and pain with glimmers of Your beauty and restoration in between; little glimpses of the sparrow breaking through the rain clouds. We ache for Your return, for You to make things ultimately and permanently new, and until then, we wait with baited breath. We wait in brokenness and in pain at times. We hope, O Lord, in things unseen. We rest in Your love demonstrated by the cross. We rest, O Lord, help us rest.

Wednesday, January 7, 2015

New Music

It's been a while since I've (Michael) written on the blog. Usually when we are not actively keeping it up it means that there haven't been any significant changes. It's true, we are still in maintenance and Watts continues to respond well to treatment. And we are thankful for that. More poignantly so this week as the boy of one of our friends passed away on Friday after a long battle with leukemia. Hannah wrote wrote about it a few days ago. His parents are amazing and strong and it's heartbreaking to imagine their loss. Heartbreaking seems too dull a word. But what words do you use when trying to imagine this sort of loss?

The past year-and-a-half have been so difficult and heavy on many levels. The treatment, the sleepless nights, the fears about the future, the questions about God and suffering and loss, the experience of death of the too-young. Hannah and I have spent countless hours thinking about these things, reading and talking, praying and writing. And I've slowly been piecing a handful of songs together. It's felt like grabbing at the mist, at times, trying to wrestle down the scattered ideas. But slowly, over the weeks and months, the songs started to take shape.

These are the most personal and difficult songs I've written. And yet, I believe the themes of fear, loss, and hope are things we all share. I've chosen seven of these songs to record, and I've scheduled time with an engineer at the end of this month. I'm excited and terrified. I feel insecure in one breath and in the next, convinced that these songs are for others as well as for me. So I am moving forward, recording with Edd Kerr, a super gifted and kind engineer who recorded/mixed a song with me earlier this year. We will be in the studio the last week of this month and I hope to have the album available by around Easter. 

If you are interested in pre-ordering a copy of the album or chipping in something additional to make the recording possible, I'd be so grateful. Also, help spread the word! Just visit the kickstarter page. and you can watch a video explaining more of the project and all of the details. THANK YOU. For any interest you have in my music, but mostly for your care and love for my family.

Saturday, January 3, 2015

"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)!"


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.”

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