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.

Birthday girl.

Happy birthday Piper girl. We adore you and your whimsical, creative, beautiful self.

By God's grace and the resilience and joy He has given you, 

you have bloomed this past year... despite it all. 

You are tender-hearted, inquisitive, and filled with stories and questions.

You are kind and compassionate to others and I have seen you 

intentionally move towards those that appear different than yourself.

 

You are so silly and love to laugh. We begin and end most of 

our days with smiles and many, many, many times it is because of you.

 

When I think back to the last year and your little two year old self when this all began, 

my eyes fill with tears. 

You have been so brave, sweet girl. So very brave. 

I couldn't be more proud of you.

Today we celebrate and thank God for you...

Your life is a gift and a blessing to your mama and papa and brother 

and to all those that know you.

2nd birthday.

 Happy 2nd birthday Gideon Watts! You, my son, are a crazy-courageous spitfire of a fighter and stronger than I could have ever imagined--- a Warrior-Boy indeed. You are indiscriminate with your smiles and fist-bumping friendly and have brought great joy and sweet laughter to this little family, even on some very dark days in the past year. In a poor attempt to sum you up, you are strong-willed and fearlessly adventurous, hilarious and expressive, kind and compassionate and a lover of all people, a huge fan of your big sister, and a cuddle-bug with your papa and mama. You are a force to be reckoned with. The past two years have been such a gift and I would live them over and over again just to know you, Watts.

All kinds of normal things.

Muffins at Spring Garden Bakery after an early morning walk.

Front porch popcorn snack.

Best part of the day = when Papa comes home from work.

Tent playtime.

Early morning walks.

Clinic.

We had a clinic day yesterday for IV chemo but Watts did not have a lumbar puncture like I wrote a couple days ago (I was getting ahead of myself on his protocal). Watts did great at his appointment and seems to love going to the hospital, as does Piper. Yesterday they did art at the art table, music with Mr Collin, and of course got to see beloved nurses, doctors, and staff. They loved it all! 

We are now on Day 2 of steroids. He had some trouble sleeping last night and some crazy irritability and rage this afternoon, but so far he has kept his appetite and his sense of humor:) We are hoping and praying for an easy week for our boy because we have some fun plans this weekend.

Thanks for keeping up with us as we truck along in maintenance!

A song for our 10th Anniversary

 

Thanks to Charlie Swing for playing pedal steel and Edd Kerr for engineering and mixing.

These days.

Well, that was an unintentionally long blog break... I wrote that I would write more when I felt like I had caught my breath, but even when things had seemed to settle back down after Watts' fever, I seemed to have lost my desire to write. I need to write these things down for memory-sake, though, so plug along I will.

Twins!

Watts is doing great. He seems to be thriving in maintenance and we frequently get comments from folks who haven't seen him in awhile about just how good he looks. Praise God. To say that we are thankful for this boy and these good days, just doesn't seem sufficient. Today as I nursed and rocked Watts to sleep [Yes, I am still nursing... yes, I am still rocking an almost 2 yr old to sleep... yes, it takes almost an hour.], I couldn't help but look down at my boy of 23 months and think about what he has gone through in his short life. It is almost hard to wrap my head around.

After the fever scare and the round of strong antibiotics, Watts has bounced back to normal and it seems as if the antibiotics has also knocked out Watts' "chronic" cough and nasal discharge. Wohoo! For the first time in months and months, Watts is not hacking and coughing throughout the day. Coincidentally, he also seems to be getting his appetite back which leads us to wonder if the cough and nasal drainage might have been causing the nausea and not the 6-mp (chemo drug). Only time will tell, I guess.

Protocal-wise, we have started our third week of 6-mp for this round. Next Monday we will go back to Brenner for a lumbar puncture with intrathecal therapy, an IV push of Vincristine, and we will start another week of the dreaded steroids. We are hoping that this steroid round is an easier one on our boy than last one.

Thank you for your continued prayers for our Warrior-Boy. 

PS. Today is Michael's and my 10 year anniversary! Today we celebrate all the Lord has done in our lives the last ten years and also remember our 9th anniversary when we were surprised by getting to go home for the first time post-diagnosis. That still goes down in the books as the best anniversary gift ever!