Steroids done & 2013

Well, day 5 was a lot rougher on little Watts. He still had a couple hours of feeling more normal but  was mostly weepy and clingy. On top of that, last night was a doozy. He was up multiple times with one wake-up lasting a couple hours of him intermittently crying and eating. We are a little delirious this morning, but done (for another month) with the 'roids! Waiting now for Watts to wake up and hoping that the steroids will get out of his system quickly. Watts is up now and is a mess this morning. Hopefully he'll be feeling more like himself soon.

On Thursday we will head to Brenner to get IV MTX (count dependent, though) and spend several hours getting an IVIG transfusion due to very low immunoglobulin level found at last blood draw. IVIG, in layman's terms, is the antibodies of over a 1000 donors and will help Watts' fight of a number of different infections. This trip to Brenner will not include a dressing or cap change thanks to his new port!

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Thank you for the prayers and support this year. We have been overwhelmed (in a good way) at the love and care from our community and complete strangers during this difficult journey our family has been on. It is hard to imagine how we could have made it through without being so surrounded and uplifted by those around us. So, thank you!

Happy New Year!

Andrew Peterson benefit concert

Our church, Hope Chapel, is hosting a concert with Andrew Peterson to benefit Watts! Andrew has been a favorite musician of ours for almost 15 years, so this is a really special event in lots of ways. Since our room can only seat about 300, they are calling it a "private" event, meaning they won't sell tickets through his website (at least initially). If you would like to buy a ticket and come, you can get all the info here: http://www.hopechapelgreensboro.org/event/517431-2014-02-08-andrew-peterson-in-concert/.

I think over 200 tickets have already been sold to folks in the church, friends, family, etc. so if you are planning on coming, get your ticket soon! If you have questions about tickets, you can email our friend Ryan, who is one of the folks handling a lot of those details: rbowles86@gmail.com.

Day 4.

We are on day 4 of steroids and it seems like it has been easier this round. The doctors have told us that each round could be different and this one has been free so far of tremors and his rage seems to be more mild. He is still is clingy and irritable and starving (nurses all day and night, it seems), but we are thankful that he seems to feel more like himself.

Here's hoping that it doesn't take 7 days for it to get out of his system this round...

Cute Christmas eve boy.

Christmas in pictures.

Christmas 2013 favorite memories: Sweet (quick) trip to Waxhaw on the 21st. Seeing the cousins together on the floor. Gingerbread house making with dear neighbors. Finding sweet gifts and notes on the porch from mysterious secret santas. Having our first Christmas morning in our new home and the look on Piper's face when she opened her Rapunzel dress-up dress. Getting a gorgeous BED from Michael (he made from scratch). Hosting VPs for Christmas dinner and night (but not cooking a thing). Surgery for Watts' port early on the 26th! It was a blessed holiday.

He's home.

Surgery went great and we're home with a groggy, but happy, little guy. Thank you for the prayers.

Surgery

We sip our coffee and wait. We've done this twice before which, I guess, makes us old pros. We sit amongst waiting parents, family, friends and I ache for some of them. I can tell the ones that are here for more serious surgeries... or maybe its the newbies I'm noticing. They're the pacers and the fidgeters and the ones that won't settle down for more than a minute at a time. A stark contrast to the sleepers and the readers.

This surgery feels monumental. A rite of passage, in a sense, to more outpatient treatment and less aggressive chemotherapy. 

This boy has been through hell and back and this day, Lord willing, is a new beginning of sorts...

Merry Christmas!

Last dressing and cap change.

Since surgery is set for December 26th, Watts (Lord-willing) had his last dressing and caps change last Thursday at his appointment. Don't be fooled...these pictures were before he started screaming his head off, just like he does every single time.

Watts update (and surgery date).

Watts continues to defy the odds and seems to be thriving with these long weeks at home. Every day it seems as if we see more of his little personality emerging. He is extremely head-strong, goofy, and very affectionate with his mama and papa and sister. We love this kid.

 
Surgery: Watts will have surgery to get his hickman catheter replaced with a chest port on Dec. 26th at 7am. He was already scheduled to be sedated for a lumbar puncture that morning, so we are going to combine the two so he will only need to be sedated once. This is a routine surgery and recovery time should be brief. We are very excited for this surgery and cannot wait to give Watts a bath once his incisions heal! We are not, however, looking forward to the steroid week that starts that same day.

At-home chemo: We have noticed no side-effects to the daily chemo that we give him here at home. His counts continue to be good, which may actually lead to a dose increase once we get to the maintenance phase of treatment. We do not want Watts to be neutropenic and susceptible to infections, but we also want to see evidence that the chemo is impacting his white blood cells. Relapse can actually present itself in a sudden jump in ANC, so we want Watts' to hover right around 1000. At his last check, his ANC was 3400, which made us incredibly nervous until the doctors were able to review his results and assure us that nothing appeared to be abnormal.

Food-wise: He will have a good day of eating solids followed by several days of only nursing. There doesn't seem to be a rhyme or reason to when or why he will choose to eat, so we are simply trying to follow his lead and offer him a variety of foods in a variety of different settings. We've found that he may not eat cheerios in his high chair but will gooble them up if we put them in various places around the dining room.

Walking: This boy is on the move, all the time, everywhere! After only a couple days of taking a step or two, Watts started walking across the room. Now we are just hoping that he starts to develop some sort of sense of fear soon so we can avoid any extra ER visits.

Appointments: We are still going to Brenner once a week for chemo (IV MTX) and to the pediatrician once a week to check Watts' counts. He also continues to have periodic lumbar puctures.He also does daily chemo at home and a weekend antibiotic.

 Sleep: Watts' nights seem to be hit or miss... we consider it a good night if he only wakes up to eat and sleeps later than 5:30am. On bad nights, he is wide-awake in the middle of the night for a couple hours. We are living in a constant state of sleep-deprivation.


 We are so thankful for this boy and amazed by him as well. What a journey these last 7 months have been!

Tuesday.

 [For my own sake, I want to start jotting down what some of our days look like... Feel free to skip!]

Watts wakes up at 6am, his normal wake-up time, after a somewhat decent night's sleep. I stumble to his room and am greeted with a grin. I nurse him and go downstairs to get coffee and turn on morning cartoons [fact: tv time before 7am doesn't count as daily screen time]. Piper and Michael wake up and come downstairs soon after. We watch a show and then move into the kitchen while Michael makes french toast. Watts toddles around in his too-big footed pajamas and starts his daily "chore" of unloading the kitchen cabinets. Piper starts on an art project at the kitchen table, requesting every two minutes that I join her. I get her started on a coloring page and run upstairs to throw some clothes on and brush my teeth. Breakfast is ready and we all sit down together. Watts throws his food on the floor and signs "all-done" without trying a bite. Piper, like clockwork, announces that she needs to go potty as soon as we start to eat. The rest of the meal is spent tag-teaming with Watts and wolfing down food.

Michael gets ready for work. I start art project #2 for the day with Piper...some complicated embossing glitter and stamps that is 1) extremely messy, 2) requires a hot iron to set the powder, and 3) I hid in the back of the art cabinet in hopes of Piper not finding it...obviously didn't hide it well enough. Piper is thankfully 100% engaged and completes a few pictures before losing interest. Watts toddles around on the floor and pulls things out of cabinets.

Michael leaves by 8am. Art time is done, Watts is fussing for more attention and needs a diaper change. I move the kids upstairs to get clothes on and Piper requests "dance class" and spends 30 minutes or so dancing to Pandora kids' stations.

Watts nurses again but is distracted. Both kids spend time jumping on Piper's bed while I hover over them. Someone kicks someone and a time-out is in order. Another someone throws a tantrum and the morning starts unraveling. It is now only 9am. Dishes are still on counters, art projects spread out in kitchen, and piles of laundry on the couch. I think about the energy necessary to entertain the kids if at home for the next three hours and decide to leave the mess and get out of the house instead.

I mentally go through my options of where I can take them for an outing that's not busy, cold, or expensive and finally decide to venture to the mall to exchange a Christmas present for a family member.

The next thirty minutes are spent wrangling kids into coats, packing diapers, and breaking up siblings squabbles. My patience thins and I snap at distracted Piper to "walk to the door right now or you will get left behind!" An empty threat that weighs on my conscience the moment it leaves my lips. We load up and I spend the first few moments of the car ride apologizing to my three year old for silly hurtful words spoken out of anger and impatience and tell her that I would never ever leave her behind. She smiles graciously and tells me that "that's okay, Mommy", and then proceeds to tell me some joke about pickles not being allowed in the car (or on a plane?) and busts out laughing so loudly that Watts joins in.

Sigh. Grace washes over me. His mercies are new every morning and, sometimes, every moment...

The mall is empty, just as I hoped and we walk the floors and point at the Christmas decorations and the speedy mall walkers. Watts sits contentedly in his stroller and eats his beloved peanut butter crackers, Piper races ahead and squeals every time she see something sparkly or Rapunzel-related. I exchange the present just as Watts melts down in the stroller. We get a lot of concerned stares --with his bald head and ng tube and screams-- and I'm surprised at how little his (and her) fits phase me anymore. I am either a seasoned mom, a laid-back mom, or just really tired.

I finish the exchange and let Watts loose in the main mall, his shaky walk slows us down but we don't have any reason to be in a hurry. We pass by Santa and he's given a wide-berth by Piper. We sit and watch two men fly electronic helicopters to Watts' delight and to the amusement of a group of old women who stop and take pictures of Watts. I'm confused by it but not enough to go confront them about it.

We move upstairs via the all-exciting glass elevator and get a snack of fries and lemonade at Chick-fil-A. We dip our fries and laugh at toddling Watts as he refuses the fries and instead plays peek-a-boo behind Piper's chair.

And then, as if from a movie, an orange helium balloon comes floating at the kids' level across the empty food court and the kiddos chase it with delight and awe. [It later meets its demise in the teeth of Piper.]

We linger in the mall until it starts to fill-up with more shoppers then we load back up in the van and drive home. Watt falls asleep on the way which thrills Piper because she knows that it buys her more screen time at home while I attempt to transfer Watts to his bed.

He nurses and transfers. Piper eats lunch and I blitz the kitchen but don't have time to tackle the dishes in the sink. Piper heads up for a nap and I lay with her until she falls asleep. Sweet, sweet girl.

I eat lunch and start some laundry. Watts wakes up. We nurse and play and Piper is up soon after. I attempt to get them to play on their own so I can tackle some chores and start some dinner but Watts is weepy and doesn't want to be put down, or held, or looked at the wrong way. The rest of the afternoon is spent trying to appease the angry boy and attending Piper's "dance class" in her room.

I send a text to Michael at about 4:30pm to give him a heads-up about the state of the house and suggest using the remnants of a giftcard to get dinner out. We are waiting on the porch when he gets home at 5:15pm.

We head to dinner of which Watts eats nothing and fusses the whole time. We walk nearby to Target to return something and kill time before bedtime. Watts loses it in the store and we head quickly home to start bedtime routine. It is 6:45pm.

From 7-9pm we attempt to get both kids down and asleep. By 9pm they are both out and we crash on the couch. Michael works on some insurance paperwork and I start wrapping some presents for our nurses. We watch a Netflix show about the Alaskan frontier and kill time till 10:30pm when we give Watts his chemo (down his ng tube). We wait for thirty more minutes so we can start his feeding pump on a thirty minute delay. We go to bed. Watts is up at 2am for about an hour with me. Michael is up at 3:30am to turn off feeding pump and flush his line with water. Piper gets in bed with us around 5:30am. Watts wakes up at 6am.

And it is a new day.

[The pictures all depict beauty... no messiness or crying, just the winsome beauty of my three year old and the soulful looks of my warrior boy. Funny how that is. A little step back plus some perspective changes everything.]

Numbers

This may not be of interest to some people, but here are a few screen captures from a recent study on Infant Leukemia out of Johns Hopkins. It's hard to find info specific to infants (diagnosis at less than 1 year old). Watts was diagnosed with ALL at 10 months old, making him one of approximately 90 in the US in 2013. (NOTE: you should be able to click on the images to make them bigger).

Life right now.

It has been a few weeks since our last hospital stay, the longest break since all of this started in May. It feels surreal to be home so long. Surreal and wonderful. Our hospital bins sit packed and ready just in case, but we aren't scheduled to go back for awhile. Side note: we miss our nurses a lot and wish we could still have them come by every evening. 

It has been interesting trying to figure out our new routine. Piper keeps asking when we are going to go back to the Ronald McDonald House and I keep grocery shopping for one meal at a time. We aren't going to the hospital as frequently, but are days still look pretty different than pre-cancer days. On our "to-do" list: give chemo at night, antibiotics on weekends, and hep-lock lines daily; get counts checked once a week at pediatrician's office and spend hours (and hours and hours sometimes) at Brenner once a week to get IV chemo, see Watts' doctors, and get dressing and caps changed. We avoid crowds, sick people, elevators, and generally all children. Thankfully he hasn't been severely neutropenic in the last month, so we have been able to get out and do more things together. I take him to church and let him crawl around in the back during the music portion of the service. We eat out sometimes in non-crowded restaurants after I sanitize the table and high chair. We go for walks but avoid parks. We go to the grocery store but travel farther to go to less busy ones.

Day by day we are getting the hang of it and figuring out what more outpatient cancer life looks like. And, day by day, we are reminded of just how blessed we are to be home. To be together. To have access to good healthcare. To have the support of so, so many friends and family. To have a God who has been so faithful and present each step of the way. This Christmas season is a sweet one for our family.

We spend a lot of hours waiting on lab results and doctors these days.

And boredom starts to set in...

And then silliness happens.

Usually instigated or encouraged by this girl. [Notice the goldfish in the hair.]

Brenner Santa. And also the first time either of my kids has sat on Santa's lap. Deprived, I tell ya. Someday perhaps I will have my act together;) Oh, and Piper would have NOTHING to do with the bearded man even though he was giving out legit. toys.

Outwitted, yet again, into taking a much needed nap after long appointments.