Wednesday, March 26, 2014

Happy 'roid baby.

We made it through another round of steroids! The last two days have actually gone surprisingly well. Instead of being irritable, Watts has been hyper and wild with only a few bouts of screaming and yelling mixed in. Of course, he has also been so hyped up that he has been sleeping terribly and skipping naps, but, all in all this round has much better than the ones preceding it. We'll take it! The doctors have said that Watts won't build up a "tolerance" to the drug over time but instead each steroid round could be different...just as we've experienced.

Next up is Watts' clinic visit in the morning for more IV chemo and then we'll start back on 6-mp. Watts' counts look fantastic this week and he clocked in an ANC of 4599! His hemoglobin and platelets look good too. 


Things Watts loves right now (20 months old): loud noises, tractors/motorcycles/helicopters, baths, jumping off of things, being chased, wrestling, music, dancing (aka spinning around in a circle until he topples over), guacamole and chips (yay for high calorie food!), going to the park, and car rides.

Some of the things Watts can do: can point to different body parts when asked (including knees and chin), throws out trash obsessively (even if it is a small piece of dust from the floor), likes to "ride" on Piper's bike, run, can go down the big slide by himself, lipsyncs to Piper's favorite songs, and seems to understand every single word we say.

We love this kid.

Thursday, March 20, 2014

Steroids (again)

Forgot to post this from Thursday night: 
Day 1 of steroids done, 4 more to go. Watts' counts looked great today and he squeaked by without needed an IVIG transfusion. He got IV chemo in his port and two synagis shots, but his lumbar puncture was delayed because Watts' cough sounded more "juicy" [anethesiologist's word, not mine] than normal and they were concerned about his airway if he was sedated. They've rescheduled it for one month into maintenance. This delay shouldn't impact treatment at all and are very much expected during the course of treatment.

Update from Saturday night: 
Watts is now three days into steroids. The full effect of the drugs now seem to be in his system, poor boy. His eyes are red-rimmed, he's agitated, easily overly stimulated, and just doesn't seem like himself. But, no tremors or darting eyes this round, thankfully! Two more days left of steroids then hopefully we'll see our little happy guy again. Although sometimes it only takes a day, it has also taken up to a week before for Watts to feel back to his normal self--- we already can't wait!

Photos from the clinic on Thursday:

Tuesday, March 18, 2014


I really want this lump in my throat to be gone; this lump that seems stuck since May 29th of last year and that reminds me hourly of the craziness we've been through, and that there may be more crazy up ahead. I find that I have to talk myself through waves of worry and griping fears almost daily. It is as if I'm crouched and ready to fly back to the hospital with my sick baby, when my baby is happy and "well" at the moment. I'm braced and ready for the next bloodstream infection, fever, mouth sore, and the next ER trip but there's no way to know if/when that will come.

My thoughts are a jumbled mess these days and my emotions are a little out-of-whack too. Slowing down in treatment seems to give room for more processing and recognizing, in a sense, what we've been through as a family the past almost 10 months.

It isn't a bad thing to acknowledge and grieve, but it makes for a tired mama.

I find myself constantly wondering, "when will life get back to normal?" I crave normalcy like a drug. I want my babies well and safe, my home somewhat tidy and food in the fridge, and a date night on the horizon. Time with friends, a vacation planned, and dinner actually in the crockpot would just be a dream. All such good, good things --not ultimate things, but good things to desire for myself and my family. Instead life feels broken and dangerous, with so many unknowns around the next bend. Granted, it has always been that way, but now I feel as if I am living more in the midst of it instead of on the sidelines looking in.

“How is faith to endure, O God, when you allow all this scraping and tearing on us? 
You have allowed rivers of blood to flow, mountains of suffering to pile up, sobs to become humanity's song --all without lifting a finger that we could see. You have allowed bonds of love beyond number to be painfully snapped. If you have not abandoned us, explain yourself.

We strain to hear. 
But instead of hearing an answer we catch sight of God himself scraped and torn. 
Through our tears we see the tears of God.” 
― Nicholas Wolterstorff, Lament for a Son

There is much that I am learning about faith, fears, God, and the reality of suffering. There's also heaps of grace for where I am.  I am slowly, slowly learning to lean more into that place of grace and to cast myself on the wounded Son who went before us. His life and death and resurrection is the only lens through which I have looked that gives meaning and hope to these trying days.

Come lift up your sorrows and offer your pain;
Come make a sacrifice of all of your shame;
There in your wilderness He's waiting for you
To worship Him with your wounds, for He's wounded too.
— Michael Card, Come Lift Up Your Sorrows

Monday, March 17, 2014

Our girl.

Beautiful girl, beautiful soul.

Thursday, March 13, 2014


The kids and I went to Watts' appointment today for IV MTX and a doctor's appointment.  Good news is that his counts all looked great; bad news is that his weight is down again 5 ounces from last week. To say that Watty's weight and eating is stressful to me would probably be an understatement. So much of my week feels geared around preparing for that weekly weigh-in... it is very hard to go in and see numbers drop. Thankfully, the kind Dr McLean shared that he did not want me to be overly worried about Watts' weight because of the intense phase of treatment that he is currently in. This was a good reminder for me to hear (and reassuring after hearing another doctor and nurse practitioner say that they were "seriously" concerned a few weeks before) because I tend to forget that this phase of treatment is intense since we aren't clocking in as many inpatient days.

So, deep breath. We'll keep pushing food (in fun, creative, non-pressure ways...i.e. eating chicken nuggets standing on the living room couch) and we'll re-address the issue once we reach maintenance... or, I guess, until another doctor freaks out and I inadvertently do too.

As far as Watts' treatment plan goes, we have one more week of 6-mp (daily chemo given at home) and then we'll go in next week for Intrathecal chemo (sedated lumbar puncture) and IV MTX and Vincristine. Plus his monthly Synagis shots in both legs. Following this appointment will be five days of the awful steroids. Ugh.

Thankful today for kind, encouraging doctors, hugs from nurses, kids that are troopers during appointments, a fun visit to see our beloved Ronald McDonald House staff, and glorious naptime.

Monday, March 10, 2014

Trucking along.

Watts, our little crazy goofy boy, is doing great. We are on the second week of 6-mp (daily, at-home chemo drug) and going weekly to Brenner for Methotrexate. Watts' appetite seems to come and go, which I'm learning can be a side-effect of the 6-mp, and par for the course. We will go back to the pediatrician's office to check counts on Wednesday and to Brenner on Thursday for more chemo.

This last week, we had some time at the science center, had the privilege of visits from both grandmas and Aunt Suzi, and spent 2 and 1/2 days camping indoors when our power went out from an ice storm. It was a fun and then weird week. We are very thankful now for our heat and power!

Staring down the tiger.
Sweet Piper.
Captivated by the fish.

Bundled up while waiting for the power to come back on.

Flower's from baby King's funeral.

Wednesday, March 5, 2014

Ashes and Hope

I had the privilege of leading the folks of Hope Chapel in an Ash Wednesday worship service tonight. I wanted to share my opening/welcome words in hopes that you'd be encouraged at this beginning of lent.

Ash Wednesday is about death.

For some, death isn't something we like to think about. It's dark, depressing-- a thought to be avoided. For you, Ash Wednesday can be a beautifully sobor dose of perspective. There is some urgency to God'scall on your life to love him with your whole heart, soul, and mind, and to love your neighbor.

For others, death may seem all to near. Just six hours ago, Hannah and I slid into a pew in a chapel in Winston Salem for the funeral of a 23 month-old toddler named King*, who died of leukemia on Friday. We wept and mourned the inexplicable loss with the people there. This should not be so. Many of you here have had difficult months and years and you feel the reality of death. For you, Ash Wednesday can be a beautifully hopeful reminder that there is MORE. Lent begins with Ashes but ends with Resurrection. Hope prevails. Death has lost its sting.

So wherever you are tonight, welcome. 


*Hannah also wrote up some thoughts about today....

Today was Baby King's funeral. To say that his funeral was beautiful and honoring would be an understatement. The room was filled with his family, friends, and beloved nurses, and I sat and wept and ached for heaven.

Michael sang the song, Psalm 126, during the service:

Our mouths they were filled, filled with laughter
Our tongues they were loosed, loosed with joy
Restore us, O Lordea

Restore us, O Lord
Although we are weeping

Lord, help us keep sowing
The seeds of Your Kingdom
For the day You will reap them
Your sheaves we will carry
Lord, please do not tarry
All those who sow weeping
Will go out with songs of joy
The nations will say, “He has done great things!”

The nations will sing songs of joy

Restore us, O Lord
Restore us, O Lord

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