Invite to Watts' End of Treatment Party!

As a family, we would LOVE to invite everyone that has supported and prayed for Watts (and our whole family) during this cancer journey to help us celebrate his end of treatment! We have been sustained and held up by the love, prayers and support of so many and we would love for everyone to be there for his special day. From meals brought to us during hospital stays, to tabs covered by sweet neighbors at restaurants on the corner, to checks slipped to us to help with medical bills, to the team of people who moved us last year, to late night texts of encouragement, to the hundreds and thousands of prayers lifted up for our family... the list could go on and on with how we have been cared for during the last two years. We are forever grateful and consider you all part of Watts' support team!

Party Details:

His actual last day of treatment is May 29th and we want to gather around him on that day as he takes his last oral dose of chemo.

We have reserved Shelter #1 at Burmil Park starting at 5pm. At 6pm, with all of us watching, Watts will take his last chemo syringe (!!!). After that we can just fellowship and play.

***Please bring your own picnic dinner (and lawn chairs/blankets). We will have cake and drinks. [There is also a volleyball court and horseshoe court if you want to bring balls and horseshoes to play.]

***Please do not bring sick children or come if you are sick. Watts' immune system is (and will continue to be for a couple months) compromised from the chemo. If you are questioning whether you or your kids should come, feel free to shoot me an email: hannahvanpatter@gmail.com.

***If it rains, we will gather at Hope Chapel. 

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One more thing... Please extend a lot of grace to me (and Michael too, most likely, but I won't speak for him) on the day of the party and in the months to come. I am approaching the day with a lot of joy as well as a lot of emotions. If you come to the party and have prayed faithfully for us for two years but haven't had a chance to tell us since he was diagnosed, please try to grab us and let us know! Just be gracious and understanding if we seem distracted or out-of-sorts.

Cancer has been a marathon journey. While we are so very, very thankful for Watts' life and want to celebrate his big day, we also bring a lot of weariness and sadness with us; physical and emotional weariness from the last two years and deep sadness for those in our cancer family who will not be celebrating the end of treatment with their sweet babies. We ache so badly for them... and, at the same time, want to honor them by celebrating every little moment before us, just as they did with their babies.

Thank you for being being gracious with me, Watts' mama,
and mark your calendars for Watts' big day!

Last LP

Tomorrow at 7:30am is Watts' last lumbar puncture. Ever, Lord-willing. I don't even know how many times he has had this procedure done, but it is enough that his scar tissue on his back hurts him sporadically every month and he knows where every wire and sensor goes on his little body as they prep him for the sedation. And this will be the last time! I can't even type that without tears coming to my eyes...

We're going to pull Piper out of preschool and take Watts to his appointment as a family. Lord willing, this will be the last time he will get chemo in his spinal fluid and the second to last time we will hold him as he is sedated and then hand him over for a procedure. The last time will be for his port removal surgery. This upcoming week will also be his second to last time on steroids. Praise Jesus!

Have I said that I am thankful for his little life lately? I can't seem to say it enough, it seems. To think of all that he has endured and gone through the last two years is simply remarkable.

While ending treatment on May 29th, 2015 is going to be a great celebration, we are also going to be heading into some unknown territory. We are going to put Watts' body to the test for the first time since May 2013, when he got so very, very sick and then was diagnosed with Infantile Leukemia. He has never been without chemo coursing through his body and, while we have hated the chemo-poison at times, we have also found great peace with him on it because it has kept his cancer away. And soon, very soon, we are going to stop treatment. We are going to celebrate. We are going to let his body rest and have his appetite return and begin to have a normal childhood (once his immune system kicks back in). And we are going to wait and see if all of the cancer is truly gone. One slow-developing, mutated white blood cell hiding in a crevice in his body could cause him to relapse. One cell. The first two years are crucial and after five years his team will consider him cured. He will be almost 8 years old when we will hear those words. 

We pray that there is not one single cancer cell left.

I say all that to share where we are. WE ARE THRILLED AND SO VERY THANKFUL FOR WHERE WE ARE. For where Watts is. We have this great thankfulness, we have our exhaustion, and we have our fears of the unknown... and all of these we carry as we march closer to May 29th.

Can you keep praying for our boy? For our hearts as we get ready for May 29th? 

We are thankful for the love and support of everyone over the last two years of our lives.

25 more doses.

Watts (and therefore all four of us) are in the throes of another steroid round. This one is a doozy, and has been rougher on our champ than I remember a monthly round being in a long, long time. He's screamed and raged and whimpered through the last 24 hours and it is heart-breaking to watch. Watts is at a tricky age because he can understand so much of what we say, and yet has no concept of what we mean when we tell him he only has three more months of treatment left. 25 more doses of steroids. 47 more doses of 6-mp. A handful of IVIG transfusions. Three more doses of MTX. Two more pushes of VCR. One more lumbar puncture. ONE! We are so very close. It doesn't feel real yet (I'm not even sure that I can remember how to do life pre-cancer), but we are reminding each other and our hearts daily and celebrating in small ways already. Watts has come so very far.

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Yesterday when Watts and I arrived at Brenner for his appointment, Watts turned to me after I told him about the procedures that they were about to do, and exclaimed, "But, Mama, I not sick!" And then we had to talk again about blood (aka Mr Red) and blood cancer and how the medicine has been helping him fight the cancer and to stay well. He listens when I tell him and then cheerfully helps the nurses and doctors as they listen to his heart, weigh him, etc. and access his port.

"It just tickles, Mama," he tells me, through tears, as they push the butterfly looking needle into his port. There's no blood return, unfortunately, so after trying all the yoga/gymnastic/goofy moves we can think of to try to make some blood appear, we end up waiting for a couple hours for the "magic medicine" to clear out any clots from his port. When it finally works, Watts exclaims, "I missed you, Mr Red!" and has the nurse in stitches. I mean, seriously, could this little man be any cuter? And then he wants to help the nurse push his chemo in; his little chubby hands gripping the syringe with the nurse's gloved one, as together they push the drugs into his little body. I snap a blurry picture of the moment because I want him to know some day this part of his story, of his courage, of his life in the throes of maintenance cancer treatment.

His cheerful demeanor crumbles at the end of the appointment as our nurse tries to remove the bandage covering his port access, his skin has become red and inflamed after a few hours under the Mepilex. He screams as we try to slowly ease it off to minimize the pain until he decides to to take matters into his own hands and, after pushing our hands away, rips the bandage off of himself. This kid is just ridiculous. The nurse shakes her head in disbelief and high-fives Watts as they discuss his choice of character band-aid, which is the ultimate reward in Watts' mind.

His labs are where they are expected, and his counts shows no sign of relapse. With blood cancer, every single CBC/lab check could hold potentially devastating news, and also holds reason to celebrate. So we celebrate and stay in the moment and leave our worries for another day.

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So, all that to say, our little warrior boy is having a hard steroid week, but we are not discouraged. Weary, but not discouraged. We have our eyes fixed on May 29th and our hearts are determined to soak up the little moments of joy between the hard moments and days... Watts has taught us that after all.

The gift.

Our days are full and yet very simple. Watts and I are buddies and hang out all day, every day. We play and read and drive Piper to preschool and paint and play playdough and coerce bites of food. We play outside and run errands and do chores around the house.

These are simple days and the greatest of days, if I slow my heart down to rest and truly see them for their beauty.

Watts has a head full of hair now, his cheeks are chubby, and his eyes sparkle most days without a hint of medication dullness. His labs have shown no sign of relapse.

He's come a long way. We've come a long way.

Watts, one year ago.

[It is with some degree of hesitancy that I write the next few paragraphs because I am so fully aware that my life is a cake-walk compared to some... And yet, I will write, cautiously, because it is where I am today.]

I have to fight each day to stay in today. Fear is at my heels at any given moment, if I am being honest, and it is a struggle to stay fully present and joy-filled in the day that is before me. But fight I will. Each day, each moment sits on my lap like a well-wrapped gift and I can choose how I am going to unwrap and engage with it. I know now, of course (and my grey hairs can attest), that the present may or may not be what I want and it may bring pain, but it is still mine to unwrap and choose how I will engage it. Will I move into the moment with honestly and open-hands, or will I enter it with a numbed heart and clinched fists? It makes all the difference, really.

It is my story, both pain-filled and beautiful.

This cancer journey has taught me many, many things, and one of the things that it has taught me is how little I really know about anything. I use to want to figure it all out, to know what's up ahead, to know that if we fight/love/work hard enough, then the labor will result in fruit. None of that is true, of course. Hard work pays off sometimes, and sometimes it doesn't. Chemo treatment works sometimes, and sometimes it doesn't. Prayers are answered the way we hope for, and sometimes they aren't.

Life is mysterious and pain-filled and God works in ways that I cannot even begin to understand. All of this world is broken. He promises to make all things new but we only see glimmers of it now...and daily we live in the tension of knowing His promises and yet having to wait for their fulfillment. We often find ourselves busy and striving for an ever-elusive happiness when, in reality, most days we feel as if we are just scraping by with bleeding hearts and broken dreams. Our work feels futile more often than we want to admit, violence and war fill the headlines, and our babies get cancer. We feel we have to fight for hope, fight for peace, and fight for our very lives at times.

And yet, sometimes it is in the darkest of seasons, that we have the eyes to look and to see the brightest of stars. Sometimes it is in the pitch-black of night that we can start to see God for who He is, apart from the blessings and happiness that we want to get from Him.

Sometimes it is when things are upside-down that our blinders are stripped away and we can see the deep beauty in this world, despite the brokenness. 

Sometimes it is in the most broken of days that we finally learn to stop striving to make life work, and we start resting in the moment that it is right before us, the gift that is on our lap.

Sometimes it is in the deepest darkest moments of our lives that we can see God and see His deep and ever-present and far-reaching goodness...regardless of the circumstances.

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The thought of losing my boy takes my breath away. It catches me at funny moments during the day and all of a sudden I find that its hard to swallow for the rock-size lump in my throat and I can't seem to get my lungs full of enough air. But my son is alive. And perhaps if he wasn't, I wouldn't write of the darkness bringing clarity or the goodness of the Lord even in the midst of pain...

But as I watch others who are walking down roads filled with grief and pain that only my worst nightmares hold, I see their faith and hear their words of His goodness and it shakes me to my core.  

In their faith, once again I see and believe, He is good.

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.

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.

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.

https://www.kickstarter.com/projects/2088995970/songs-in-the-night