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.

"Troubled Soul, Be Still"

I've been deep in Advent planning mode for the past month at Hope Chapel and I've loved it this year more than ever before. The happenings of the past 6 months stormed into our family story without permission, and I'm amazed at how much differently we're thinking about life. Advent is all about waiting and longing... not just in a sentimental nativity-scene kind of way, but longing for things to really be made right. I love the way someone put it-- one day "everything sad will come untrue." Without question, we're identifying with that longing in ways we never have before, and it's both heartbreaking and hopeful. These words, from a sermon Dietrich Bonhoeffer preached on December 2, 1928, say it well:

The celebration of Advent is possible only to those who are troubled in soul, who know themselves to be poor and imperfect, and who look forward to something greater to come.


I've been coming back to a certain hymn text every few weeks for a while now. It was written by Albert Simpson in the early 20th century and, in the context of waiting and longing, seems like a beautifully unconventional advent song. I set it to new music and recorded a rough demo. Hope it's an encouragement to you as it's been to me.




O Troubled Soul, Be Still

Be still, O troubled soul, be still;
Fear not, the Father holds you near.
Take up your cross, lay down your will,
And bring him all your fears,

And bring him all your fears.

O anxious soul, lay down your load,
Oh, hear His voice, He speaks to thee,
“Be still and know that I am God,
And cast your cares on Me.

Cast your cares on Me”

O fearful soul, be still, be still,
Be of good cheer; has He not said,
“I will be with you, fear no ill,
I am here, be not afraid“?

I am here, be not afraid“?

O waiting soul, be still, be strong,
And though He tarry, trust and wait;
Doubt not, He will not wait too long,
Fear not, He won’t be late.

Fear not, He won’t be late.

Tidbits.

Cheerios on the floor = creative sensory play. Right? I'm either really laid-back or really tired these days when it doesn't phase me at all when breakfast (and my tupperware) ends up on the floor.

 Or maybe both.

This boy is on the move and can walk across the room fairly quickly now. He amazes me every day.

These boots were made for walking!

 

Watts had several days of cranky crankiness for no known reason last week. Possibly lingering effects of steroids or chemo, or possibly teething, or...who knows what. Sunday morning he woke up happy again so we are thankful.

We are thankful to be home this Christmas season and thankful for the prayers of so, so many.

The weary world rejoices.

December?

Can it be December already? In some ways, I feel like everything went on hold at the end of May and at some point we should pick back up where we left off. Instead, we pull out winter sweaters and boxes of Christmas decorations... Time passes, even in the midst of crisis.

I feel as if I've been walking in a fog these days. Some of it is pure exhaustion, a lot of it is weariness of heart.  We are so thankful for how well Watts is doing and that we are home, yet we are aching for those that are back in the hospital. Those that are waiting for miracles.

We entered a small society upon Watty's diagnosis and there are great ripple effects when one baby is having a hard time. I wonder if that will ever change...

---

Update tidbits:

-The appointments went well yesterday at Brenner. We have a tentative surgery date for Watts to get his hickman line replaced with a chestport before the end of the year. The surgeons and heme/onc. doctors all agreed that it will be the best thing for Watts. We are excited for this next step and cannot wait to give Watts a real bath.

-Watts pulled an all-nighter 2 nights ago and skipped his naps... Lingering effects of the steroids were we told. He was happy, but sleepless. We are dog-tired.

-He started the new at-home chemo (6mp) and so far so good. He will take it for the next three weeks.

-Watts took some steps! I caught attempt number 3 or 4 on video but have yet to import it. Super boy. Defying the odds.

Happy boy.

This kid has bounced back from the steroid days and we are so glad to have him back. He still has moments of clinginess and rage [Can he learn bad behavior from the steroid days??] but is overall his normal chatty playful self.

We are heading to Brenner in the morning for some outpatient chemo, a dressing/cap change, and to have a meeting with a surgeon about the possibility of replacing Watts' hickman line with a chest port. The chest port would be under Watts' skin and would enable him to take a bath and not have to have dressing/cap changes, line care at home, and there is a little bit less of a risk for blood stream infections.

Someday I'll take out a better camera and take some more pictures...

Quick update.

Steroids finished today, thank goodness! We get three weeks off (while he does other outpatient chemo) then he'll go back on them. Hoping tomorrow we might see glimmers of our happy boy again. 

Otherwise, all is well. We are very thankful to be home.