No-fever dance.

The kids and I went to check Watts' counts this morning and, as expected, Watts' ANC is zero. This means that he is severely neutropenic and incredibly susceptible to infections, fevers, etc. The neutropenia is due to his last round of treatment (the chemo can't differentiate between healthy and mutated white blood cells and wipes out all of them).

Please pray that Watts remains healthy during this time and that his counts recover quickly. We are giving him daily injections of the drug neupogen to help his WBC (white blood count) recover and obviously keeping him isolated at home.

Other than the neutropenia, Watts is doing great. He seems happy to be home and is his normal active, goofy self. We are adjusting to not having the convenience of the ng tube and are learning how to give his medications orally. Watts' appetite is okay right now but he will only eat if he is out of his high chair and if we pop the food in his mouth as he plays...he is just too busy to slow down, I guess! Current foods that he'll tolerate are: Larabars, Veggie sticks, and sometimes Chick-fil-a chicken nuggets or aged cheddar. He also still nurses 3-4 times a day. I may or not have googled, "Can a toddler survive on Larabars and breast milk only?" Haha!

PS. Watts challenged the front sidewalk to a fight and I'm not sure who won:) Thankfully this was before his counts dropped otherwise we probably would have been a lot more panicked about the scratches (open wounds are not, not good while neutropenic).
We definitely have a rough-in-tumble boy on our hands!

Home.

Day 5. I can hardly believe it!

Watts is napping. His head, newly covered with blond fuzz rests up under my chin and his legs are tucked up against my belly as he sleeps. The shades are drawn here in 911 and the sound machine drowns out the voices from the people next door and the hustle and bustle from the hallway.

Michael is taking load after load of our stuff down to the car so that when the last drop of Mesna drips into his port in less than an hour, we can walk out of here. Say our goodbyes, take a few pictures, and go HOME.

What a day! Tears have easily for me as I reflect back on how far we've come. Today we choose to live in joy and without fear and we celebrate that THIS IS OUR LAST SCHEDULED INPATIENT STAY! Forever and ever, amen.

The hero of the day...no, the last 11 months.

 --------------------------------

Notice something missing? The NG tube was pulled out today in hopes of clearing up a lingering cough and ongoing nasal discharge He has been eating great while off of his at-home chemo, 6-mp, so the doctors decided to pull the NG tube out for the two weeks we'll be home and off chemo during count recovery. If he miraculously keeps his appetite up when he starts back on the 6-mp, then he'll get to keep it out. If not, then they'll put it back in and hopefully the cough/irritation in his throat will have had a chance to heal by then. Regardless, we are loving seeing his whole face for really the first time (for longing than a quick tube change) in almost a year!

Day 4.

Just pictures for today. All went well... 4 days down, 1 to go!

Hanging out with papa.

A little guitar playing to pass the time.

Comparing ports with cancer-rockstar-friend, Alisa.

Helicopter watching.

Being silly.

Naptime snuggles.

Day 3.

Day 3 is off to a grumpy start for our little Watty. He is getting an IVIG transfusion before chemo starts today and with this transfusion he has to be pre-medicated with Benadryl and Tylenol (and he'll continue these meds every 4 hrs for the next 24 hrs). We are thinking that the Benadryl is making him feel loopy and grumpy...plus he has a really, really short leash with this transfusion and has to get frequent vitals. No fun at all.

He's going to get an hour break between the transfusion and the start of chemo so we plan to let him run the halls a bit (with IV pole in tow, of course) and hopefully get some energy out.

2 days down, 3 to go! Watts is a trooper.

Day 2. This is a long one.

Last night Watts gifted us a fantastic night of rest by sleeping from 9:30pm to 6:30am with only one wake-up to nurse. This would be considered an amazing night of sleep at home, at the hospital it seems like a small miracle. Of course the good sleep was made possible by our ninja night nurses and many prayers, I'm sure!

Today we will start chemo again around 11am. [Updated to add: chemo now done!] Until then we will continue chasing Watts around the halls (with IV pole in tow) and pulling out all the tricks out of our proverbial hat to entertain this crazy toddler. He is an absolute hoot these days and I think is enjoying having an even larger audience up here with the nurses and doctors. Last night he put on quite the show before bed by "singing," shaking his hips, and doing some hilarious head shakes that had the whole room in stitches. Kids are so resilient.

---------------

It has been interesting coming back to the hospital after nine (or so) weeks at home. In so many ways, the hospital is our second home. We return and fall back into our hospital routines easily and we love being surrounded by our nurses and doctors and so many people who have been with us since the very beginning. They "get" cancer and have been with us through some very hard days and long nights. It is also comforting to have Watts  monitored closely and to have so much medical support at our finger tips. In other ways, however, coming back to an inpatient stay is agony after so many weeks at home. I get flashbacks to harder hospital stays and it is a reminder that this leukemia journey is very real and very serious. It is crazy to think that this, Lord-willing, is it...

This is our last scheduled hospital stay. It feels weird to even type that. I am a mix of emotions when I think about it... there is excitement, nervousness, fear, and probably a lot more complex emotions that have yet to surface. We have a year more of outpatient treatment but this is the last big assault against the leukemia. After this, we wait and keep trucking along with at-home chemo and Brenner appts and pray.

Cancer is ripe field for gleaning character-building lessons and encountering one's sinful nature, let me tell you. I can wallow in the fears of tomorrow (and I do a lot)... I can read the statistics, stalk other Infant ALL stories, and literally work myself into a frenzy of worry and fear about the days ahead. But to what purpose? Somewhere I read that worry is the thief of joys and I'm finding that to be true. Seems like a no-brainer, but when it comes to my child and the future, worry seems to be second-nature to me. Add cancer into the mix and my grip becomes a white-knuckle one. As the old song says:

All to Jesus I surrender

All to Him I freely give

 I will ever love and trust Him

 In His presence daily live

 All to Jesus I surrender

 Humbly at His feet I bow

Worldly pleasures all forsaken

 Take me, Jesus, take me now

 I surrender all

 I sing that but I don't really mean it... my lyrics would say, "I surrender all except the health of my kids, Lord." Because really, how is one suppose to muster up the strength or maybe have enough faith and trust to offer up one's kids? I could never be Abraham and freely offer up Isaac. And yet, somehow, I am called to do that. Not literally to put my child on an altar and (be willing to) drive a knife in his heart, but to simply let go of pretending I'm in control of my children's lives and stories and to trust that He is... even if/when their stories go in directions that I wouldn't choose.

This stuff is hard and I fail at it 5 million times a day.

What I do know and what I keep reminding myself is of those early horrific PICU days... when Watty was so close to not making it and our life felt like a living nightmare: He was there. His grace was truly sufficient for those days and His peace surpassed understanding. Remembering His faithfulness in the past encourages me to trust Him with the future. With my babies. With this cancer. And lastly and most importantly, I have to keep looking to the cross. As I remember His death and resurrection, I am reminded of his undying love for me and His desire for my good. And remember that, in due time, all shall be made new.

I believe, Lord, help my unbelief.

Day 1.

One day of chemo is down! Michael, Watts, and I got to Brenner this morning at 9am and had an appointment on clinic-side with Dr Russell. He gave the green light to admit for this week of chemo so Watts had his port accessed and we headed over to Rm 911 (ominous number, no?). 

Watts had a two hours of fluid followed by two hours of Etopside, thirty minutes of Cytoxan, and a couple hours of Mesna. So far, so good. We have four more days of the exact same drugs and we're hopeful that Watts will tolerate this drug cocktail just as well as he has in the past (with minimal side effects and no medical drama). We'll discharge late Friday afternoon and return home for count recovery.

We are so thankful to be starting our last scheduled hospital stay and so glad to see our beloved nurses as well as the awesome Ronald McDonald staff!