Fears and treatment and beauty.

Watts woke up early this morning in a decent mood but something changed by the time we sat down to a breakfast of oatmeal and a story from the Jesus Storybook Bible. He began to scream and wail and smack us and seemed inconsolable; Nothing seemed to calm him down and we weren't sure what had triggered him or if he was in pain. Within seconds the morning shifted and suddenly I'm analyzing his every move and thinking back to when his last labs were and what medication he just took.

By mid-morning he was fine and we are left to wonder whether he was experiencing side-effects from the drugs he takes on a daily basis or whether he is throwing a normal two-year-old tantrum or whether something else is brewing in his little body.

By late morning the kids and I headed to some trails and spent some time "hiking" and exploring nature on this gorgeous fall day. We picnicked under trees of yellow and red, and the kids were adorable and hilarious and got along beautifully. I laid on the blanket underneath the blue skies and fall colors as Piper and Watts played next to me, and I forgot all about the morning angst and found myself thinking that life probably doesn't get much than these moments. Right then and there. Children's laughter out in the woods, full bellies, no where to be... My heart seemed to struggle to soak it all in... it was one of those moments you just want to bottle up and store away forever.

Those two snapshots from our day today (and it's just now 1:30pm) seem to capture the kind of bizarre and painful and wonderful and overwhelming days that I'm living.

We are still deep in the throes of cancer treatment. This phase of treatment is significantly easier on our boy -most of the time- but there are still some months where we spend over half of it "in the trenches" with side effects from steroids. But more than that even, it seems that Michael and I have entered the emotional battlefield of cancer. While Watts is already 18 months (!!) into treatment, for a huge chunk of that time the treatment was so intense that we spent most of our time in go-mode. There was little time for worries beyond the day that was before us. Now we have a lot more space doing outpatient treatment [which has been so needed and wonderful for our family]... but with the space comes a lot of fears and questions and anxiety. It is difficult to not question every tantrum, every bite he refuses to eat, every sleepless night. We want to live fully present in each day and treat it as a gift, but we are also the eyes and the ears that are on Watts on a daily basis; when before, during our inpatient days, we had the comfort of having doctors and nurses nearby at all times. It's a tricky line to try and walk.

Thankfully, in the very midst of the wrestling with fears and anxiety and the constant watching, there is tremendous joy. There are hours and days, like today, where I simply can hardly believe how well Watts is doing and how happy and healthy he seems to be. I feel as if my blessings are abundant and overflowing.

So that's a bit of where we are right now... Watts is doing great but still needs continuous prayers as he undergoes daily treatment. Michael and I are doing great but still need prayers as we wrestle through an array of emotions and fears and as we try to recover a bit from living in an ongoing state of exhaustion. Piper is simply great. She is pure delight and joy and we are all a bit crazy about her.

Now I'm off to take advantage of a few minutes of overlapping nap/rest time...
Thank you for reading and praying and loving on our family. We are blessed by the support and encouragement.

Another month.

Watts and I will be heading to Brenner in the morning for another routine appointment, chemo, lab check, and maybe some art therapy. He will also be starting back on steroids for the week.

Thanks for the prayers for our little superhero!

A difference of a year.

 Last year at this time, we were celebrating Watts having the strength to push a chair across the room. He was in the throes of intense treatment and lots of hospital stays, but, amazingly, every time we got him home he seemed to be bound and determined not to get too far behind developmentally. We were (and are) so amazed by this boy.

These days, we have to hustle to keep up with this boy. What a difference a year makes!

Day by day, we are settling into a new rhythm, a new normal for our little family. Watts continues to do well in maintenance; we are now a couple months into this stage of treatment and have about 8-9 months left. Some praises: 1) His bi-weekly blood checks have all shown no sign of cancer. 2) His appetite is remaining fairly consistent (more importantly, the doctors are happy with his weight) and he is taking his daily oral chemo like a champ. 3) He seems to be on track developmentally and is talking up a storm. 4) We've also had a couple months with no ER visits!

Although life is not "back to normal" and we still have challenging days, I'm finding that there is more space these days to try and forget about cancer and treatment and just let Watts play and be a crazy little boy. And I find myself standing back and watching him in amazement.

Prayer requests would be: Sleep (still an issue thanks to steroid week each month), continued good blood checks, for Watts to stay virus and infection-free this flu and cold season, and for easier steroid rounds. This past steroid round was rough on our little man. Thank you for your continued prayers!

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!