Where we go from here...

 I'm currently sitting in Watts' darkened room trying to convince him with my presence that a nap would be a good idea.

"No nap, Mama. Watch a show?" No buddy, I reply, I'm the mommy and I'm saying it is time to sleep. "No, I'm the mommy! I say watch a shooooowww!"

And so it goes. And I can't help smiling even while I type this because even this is cause for celebration. These nap protests? Such typical two year old behavior. Typical! I am so thankful to type that word in reference to my son.

. . . . . . .

I just took a break from writing and rocked him to sleep. He thinks that he's playing me by requesting to rock again about five minutes after getting into bed but the joke is on him because I don't mind in the least.

When we rock, he tucks his curly haired head up underneath my chin and life seems to slow down to a rhythmic back and forth, back and forth. I've found that I can reset my day by that rocking. I can slow my racing mind and heart to the steady back and forth, and pray in the darkness for the stillness and mindfulness to just be with my son in this very moment.

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Watts is a week and a half off of treatment and every day it seems as if he is coming more alive. Perhaps it is only our imagination, but each day off of treatment he seems to gain more energy, eat a little bit more, and become quite the little rascal (poor Piper, is usually the recipient of his aggression teasing). He does still complain about his back (we believe that the pain is from his numerous lumbar punctures and scar tissue built up around the access point) and his appetite is still sub-par, but we are thankful for where he is.

We've had a lot of questions about what comes next now that the chemo treatment is done, so here goes:

We are now heading into Watts' follow-up/monitoring care. Because of his high-risk diagnosis of Infantile ALL, this will entail monthly labs and clinic appointments for the first year post-treatment,  every two month checks for the second year, every three months for year three, every four months for year four, and every five months for year five. The first two years post-treatment are when he will be at a greater risk of relapse. This gradually decreases the further he gets from EOT, and after five years post-treatment (when he is almost eight years old) he'll be considered 'cured'. What a day that will be! As well as monitoring for leukemia relapse, his team will be monitoring him for organ damage and secondary cancers that could be side-effects from the chemo he has had in his little body over the last two years. His first post-treatment echocardiogram should be in July or August.
 
His immune system will take some time to recover. For over the last year, the chemo has kept his ANC (ability to fight off infections) hovering around 500-1500 (a normal ANC for a child is 3,000-5,000, I believe). His ANC should start recovering soon and we are hopeful that his IGG level will start improving in the next couple months. When that happens, Watts will most likely not need any more IVIG transfusions and we can schedule his port-removal surgery. We will still be cautious about germ-exposure with him to some extent (no clue what this looks like yet) until he is re-vaccinated in a year. As of right now, his immune system has been "wiped clean" and he is not able to receive vaccinations until he has some time off of treatment.

Our wonderful, crazy-optimistic doctor has told us time and time again, that Watts has received the best treatment and medication available today to treat his disease. While we could view the next few years as a waiting game (which we are choosing NOT to do), we should find great comfort in knowing that Watts has received the best care available to him. And we do find comfort in that!

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All of the above may feel a bit heavy to read. When I share it with people, I have found that their faces tend to fall and they usually comment on how they can't believe it isn't all over yet. 

Sometimes I feel the same way. The weight of the what-ifs can feel suffocating if I linger there for too long, the questions without answers can be maddening. 

Despite it all, we are not without hope! I have my moments -and days- of anxiety, but when I am able to acknowledge the dark waves in my heart and the heaviness of my fears and exhaustion and cry them out to my Father, I find that the waves begin to still and the clouds begin to lift. He meets me there in the honest cry of my troubled heart. I then find that I am able to move from the fear of tomorrow to being able to stay in this gift that is right before me: the beauty of today.

As I stay in this gift of today and remember His faithfulness to me in the past, hope floods back in. It is a complex hope now. It is not merely a hope that Watts will not relapse, it is broader hope that this broken world will ultimately be made new; that all this pain and cancer and death and tears will once and for all be wiped away by the One who not only loves us, but who endured death to win us back to Himself. And it is a hope and a "full-leaning-my-weight-upon" faith in my Abba Father who has not for one second stepped away from me... even on the darkest nights of my soul.

I'll close this ridiculously long post with these lyrics by Sandra McCracken from her new CD based on the Psalms (it is amazing, go buy it):

We will feast in the house of Zion
We will sing with our hearts restored
He has done great things, we will say together
We will feast and weep no more

We will not be burned by the fire
He is the LORD our God
We are not consumed, by the flood
Upheld, protected, gathered up

In the dark of night, before the dawn
My soul, be not afraid
For the promised morning, oh how long?
Oh God of Jacob, be my strength

Every vow we’ve broken and betrayed
You are the Faithful one
And from the garden to the grave
Bind us together, bring shalom.  

No more chemo!

After two years of treatment, our little warrior boy is all done with chemo! Last Friday night, a crowd of family and friends gathered around us to watch and cheer as he took his last chemo syringe. It was a blessed, blessed evening. Thank you to everyone who celebrated with us! I've been at a loss for words the last few days, but will post more about the special evening soon.

Live Music

Michael is going to be doing a live performance of all the songs on "Songs in the Night", along with some other music, on Saturday June 6th. If you are in the Greensboro area, we would love to see you. The concert is at 7pm at Hope Chapel (1825 Spring Garden St) and it's free. There will be a great band, including string quartet. Hope to see you there!

Saturday, June 6 at 7:00pm
Hope Chapel
1825 Spring Garden St
Greensboro, NC 27403

Video of Watts Ringing the Bell

We passed another treatment milestone yesterday as Watts got his final chemo infusion at Brenner.  It was a happy, happy morning and Watts got to ring the bell surrounded by his beloved nurses and doctors. We are so proud of our little superman. He now has only ten days left of chemo at home (steroids, MTX, and 6-mp).

Our dear friend Alisa came with us (I got to be with her when she rang her own chemo bell!) and took pictures and surprised us with this video:

The long awaited bell-ringing.

Tomorrow we go to Brenner for Watts' last dose of Vincristine. After his appointment, Watts will get to ring the bell in the clinic to commemorate his last chemo infusion at Brenner!

We are playing it up big for Watts and are all going to wear his favorite Superman shirts. After tomorrow, he will head into his last week of steroids and then a week of another oral drug that he takes at home. On May 29th, he will be done with treatment! Twelve more days to go.

Last Month of Treatment (in pictures)

These may not necessarily be in order, but I wanted to post some pictures for those of you who don't follow me on Instagram. Watts has been a trooper the last month and is currently only 17 days away from ending treatment (!!!). He has no clue what that means, but we are starting to talk about it more and are counting down the days for him.

Waiting to see Watty's doctors a couple weeks ago.

He's "spraying all the monsters" with the tube accessing his port. 

Waiting for Watts to wake up from his last lumbar puncture. 

Having a rough time waking up from sedation.

Steroid days call for staying in pjs...

And pasta for breakfast...

And lots of snuggles.

Papa-loving (and done with second to last round of steroids).

He always sleeps with a car...Lightening McQueen preferably.

His hair is so long that we have to put it in a man-bun to keep it out of his eyes. 

 IVIG transfusion. [He's napping, not sedated.]

Counting down and celebrating each milestone and chemo dose.

A rare family picture!

Songs in the Night available now

About a month ago, I (Michael) released "Songs in the Night", a recording of seven songs I wrote during the past two years of Watts' treatment. I know that lots of you pre-ordered it, making it possible to record the album... thank you! For those of you who didn't and are interested in getting a copy, I wanted to give you the links. I'm proud of how it turned out– in the sort of way one is proud of a scar; because it tells a story. Our story and, in many ways, your story, too.

What I mean is that many of you have cared for and walked with us during these two years, so you are part of Watts' story. But of course, suffering and struggle are inevitable– something that binds us together as human beings– and so these songs tell your story, too.

You can download the album on iTunes and Amazon. Or, if you want a physical copy (which also includes the download), you can get in on my Bandcamp site.

I hope the songs encourage you. If there's someone you know who might like to hear them, please pass on the links or let me know. I would love to send them a copy. I'm also working on some plans to play these songs live and will let you know as that develops.