His love.

The Lord and His love has pursued me. Even in the darkest moments of the last year when there seemed to be no hope, I knew that I was not alone. As I ran after the stretcher carrying my son to the waiting ambulance on that dreadful day last May, the words "He makes all things new, He makes all things new," ran continuously through my mind. I didn't know how He was going to make things new; I didn't know if He was going to spare my son's life or instead eternally spare him from pain and sickness and brokenness by calling him home, but I knew He was good and He was present. It's hard for me to believe it now looking back, but even in the darkest moments in the Brenner PICU, I knew that He was there. He was there holding me up through the long nights of waiting; He was there in the hands of the skilled doctors and nurses; He was there in the prayers of hundreds, possibly thousands rallying for my son; He was there in the courage and the tears of my husband; He was there.

His love sustained me. The Gospel truths breathed life into my weary soul: He is good. He loves me. He loves me so much He gave His son for me. I can rest in His care...come what may. In the last fourteen months, He has whispered over me when my heart has felt discouraged and when all seemed too exhausting and bleak to continue. He has strengthened me when I felt I couldn't continue on my own. Even in these current days of grateful living --sandwiched between wrestling with fears and finding a new normal-- He has been patient and gentle with my struggling heart...

He loves me. Oh, how He loves me.

Tube-free!

Watts is tube free, hopefully for forever! He has been eating like a champ and taking his medications by mouth for a couple of weeks, so we pulled his NG tube out on Sunday night. We were hardly even noticing the NG tube anymore because he has had it for so long, but what a joy it is to see him without it!

In a couple days, Watts will have completed fifteen months of treatment and will have nine more months to go. Day by day, step by step, bite by bite, he is making progress! 

IVIG

Watts' lumbar puncture went well on Monday and all his labs (except for IGG level) looked good. Due to his low IGG level, Watts and I are back at Brenner for the day for an IVIG transfusion. We got here super early to get Watts' port accessed and to get in a room, and now we are killing time while we wait for the IVIG order to arrive. We've roamed the halls, watched for helicopters, ridden on the go-cart, and talked to our sweet nurses that we've missed so much. While it has been wonderful to be in maintenance and do all outpatient treatment, I've missed all the staff on the inpatient side and, in a weird way, I've missed the familiarity of the world that we lived in for the last year. But, don't get me wrong, it'll be good to leave in six hours ;)

I am so thankful for this boy and how well he's responded to treatment. And, my goodness, he's come a long, long way!

Routine sedation.

Watts and I are heading off to Brenner for a routine lumbar puncture and chemo. Although we've been through this a number of times, prayers are always appreciated!

Short update & Fears.

Watts is doing well. Well, at the moment he is on day four of steroids for the month and is about to crawl out of his skin, but that is to be expected. Overall, he seems to be thriving. We have been able to make some trips this summer, have some fun birthday celebrations, and done all kinds of normal family things. It has been such a gift and we are trying our best to savor these days. Praise God from whom all blessings flow.

I haven't been posting as much to this blog or to Facebook as I try to be fully present with Piper and Watts (no more long hospital days to sit and write anymore), but if you would like more frequent pictures, feel free to follow me on Instagram (hannahvanpatter). I've been a little bit more consistent on there since I can post with just a couple taps of some buttons.

There's no real transition for the next part of this post, but below is some of what my heart has struggling with lately:

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I've been wrestling with fears hard-core the last couple of months. The first year was such an intense time in treatment that there was very little time to worry about anything in the future. We were in the trenches. I lived one day at a time with very little energy left over to give to any thoughts about the future or even next week-- One foot in front of the other, one moment at a time, or so it seemed. Watts' health and comfort was paramount, loving on Piper came next, and then everything else got lumped together for whatever remnants of energy might be left. And there rarely was much.

It is different now. We have a lot more space and a lot of time of just being home. We play cars, splash in the kiddie pool, wash laundry, cook some chicken nuggets, and do all kinds of slow, mundane, and beautifully simple kinds of things. Some days are so, so good. Thankfulness seems to blanket those days and moments with my kids seem precious beyond words. It is truly a gift to be able to be home with them, to watch each and every smile, and to make up for lost time spent in the hospital.

But to be entirely honest and vulnerable, there are harder days too. There are days when I seem to sink into a funk that is difficult to come out of. I cry a lot. My heart feels heavy on those days and my mind is filled with so many thoughts, none of which feel coherent. I do know that there is a good deal of grief and heaviness (and some horrid flashbacks) from this past year, and there is also a good deal of anxiety and fear about the future. There are so many questions and unknowns about the days ahead... even buying Watts shoes for next year can send me spiraling into dark places (or have me crying tears of joy that I am still buying shoes for two children). I'm caught in the middle of my own crossfire with all of my grief from the past year and yucky fears about the years to come with a good measure of thankfulness and joy tossed in just to make things really confusing.

This was not the story I would have picked for family. It is more broken and painful than I would have ever liked. And what about the end? Is the cancer piece of our family's story over? There are no easy answers. There is no fast-forwarding through the next six years to see the outcome of our story (just as there is no fast-forwarding through the grief process of the last year). This cancer journey has taught us that life should be lived to the fullest today, so by golly, I will not live the next six years just waiting in dread to see what tomorrow will bring.

My heart right now is a bit of a mess and I'm trying to be okay with that [I'm also seeing a counselor to help remind me that its okay to be where I am and to help me process through things.] I am trying to navigate through the tricky waters of honoring my emotions and grieving the brokenness of the past year while also figuring out how to rise above the funk so I don't miss out on today. Whew! Confusing stuff. I think that if I could have about a month to slip away somewhere and recover and process the past fourteen months, I could emerge with so much more clarity, strength, and hope than I have normally on my funk days. Since that is not possible, I will steal moments here and there and trust that, just as the Lord has been faithful and sustaining on this cancer journey, He will be faithful and sustaining as I grapple through hard heart issues.

 I can't get enough of this song these days:

Reason To Sing, All Sons and Daughters

When the pieces seem to shatter
To gather off the floor
And all that seems to matter
Is that I don't feel you anymore
No I don't feel you anymore

I need a reason to sing
I need a reason to sing
I need to know that You're still holding
The whole world in Your hands
I need a reason to sing
When I'm overcome by fear
And I hate everything I know
If this waiting lasts forever
I'm afraid I might let go
I'm afraid I might let go

Will there be a victory?
Will You sing it over me now?

Your peace is the melody
You sing it over me now
Oh Lord
Will there be a victory?
Will You sing it over me now
Oh Lord

Your peace is the melody
You sing it over me now
I need a reason to sing
I need a reason to sing
I need to know that You're still holding
The whole world in Your hands
That is a reason to sing

Listen to it here.

PS. This probably goes without saying but another tricky part of processing the last 14 months is that there is a good deal of guilt for not staying in a constant place of thankfulness. My son is alive and well today...so many other cancer families cannot say the same. So I write all of the above with much trepidation and have, consequently, had this post sitting as a draft for quite a long time. I want to be honest about the ups and downs of this journey but I also do not want to rub salt in the wounds of grieving parents who would delight in being in my shoes.