Halfway through round 1

After the first round of chemo treatment, we knew we would be waiting for Pia's blood counts to drop, waiting for them to build back up, and then a brief stint at home before the start of round two. She has reached the halfway point today. From here, we wait for her body to start recovering. With the significant drop in counts, she's reached about her lowest and developed a fever early this morning. A fever of 100.4 quickly turned into a 104 fever. Yet none of the doctors or nurses seem as flustered or anxious as I am--which I suppose is comforting in its own twisted way.

In the midst of blood cultures, Tylenol, antibiotics, increased fluid, a platelet transfusion, and close monitoring of vitals, Pia discovered her hands and knees today. Seriously, nothing stops Pia from having fun. She's been rocking back and forth, and you can see the determination in her eyes to just take off crawling. (I tried to upload the video of her pre-crawling to no avail. I'll have to snap a picture tomorrow and add it here.) I'm grateful that Pia knows how to turn life into an adventure and find the joy in the midst of pain. There's a lot of wisdom to gain from this little 12 month old nugget. Keep on teaching, Pia. I'm listening. 

Merry Christmas to all and to all a good night

Good night, sweet baby Pia.

Good night, dear husband and precious baby boy.

Good night, sweet baby Jesus. Happy birthday. And a blessed Christmas to all. 

may nothing ever hold us back

I wish I knew how to do all this change well, without complaint, without sadness, without exhaustion.  I haven't posted in a few days because I was so overjoyed to spend time with my husband and son and then so miserable leaving them again. I missed Pia and am joyful to be with her and care for her. Yet, I'm miserable at the same time without my better half and my little munchkin. Being home made me see all the things I missed: the comforts of familiarity, sitting in front of a cozy fire, cuddling with Max, making breakfast together, laughing together, going to mass together, (oddly) cleaning the kitchen and the routines of daily life. I miss home. There's truly no other way to say it. In all humility and with no intended self pity, I miss home and don't know what to do about it. The weak part of me says "push your loved one away so that you're not sad when you say goodbye to him and to visit less so that your heart doesn't hurt so often." The small, less persuasive side says to hold nothing back. To give and keep giving until it hurts and then give more. The reality is: I can't be in two places at once, but I can learn to give without holding back. 

"I grieve for thee, O Mary most sorrowful in the consternation of thy heart at meeting Jesus as He carried His cross. Dear Mother, by thy heart so troubled, obtain for me the virtue of patience and the gift of fortitude."

Max's birthday

Today was Maximilian Kolbe's second birthday.

Our son is an incredible kid.  He is sweet, and creative, and downright funny.

And he's adjusted really well to the new reality of our lives.  He's spending more time than usual with me. And my mom, his Amma, is here, and they get along famously.  But he knows his mom isn't here, or his sister, and every so often he looks around for them, nervously. When we skype, or facetime, his face lights up with a smile reserved for Kate.

Good morning, sweet boy

Still, though, he's doing well in difficult circumstances.


And I wanted to make his birthday special.


When he woke up, I spent an extra-long time cuddling with him, and singing our family's birthday song, and tickling, and laughing.


He spent a good day with my mom, and she let him do the things he really likes, like vacuuming. (he is a very good boy!)

When I got home, he helped me make some chili, and then two families we love came over.

We ate chili, and homemade hummus, and blew up balloons.  He loved the balloons.

We sang "happy birthday" and ate cupcakes.

He got a present he loved, a percussion table, with a drumhead, and a xylophone, and a top-hat cymbal.  He played the xylophone for a long time before chewing on the drumstick.

After everyone left, we put on pajamas, and built a fire, and with Amma, we sang the songs Max loves.  The kid loves music.  Mostly hymns, and chant.  We sang advent songs, and some of his favorite hymns, and he cuddled on my legs.  I rubbed his back until he fell asleep.

It was a very good day.

But-- we're a family when we're together, and we missed Kate and Pia terribly.

I was thinking about one of Max's favorite songs, and especially this verse, written by Thomas Ken in 1674:

Teach me to live, that I may dread
The grave as little as my bed.
Teach me to die, that so I may
Rise glorious at the judgment day

I think God is teaching us, through all this cancer stuff, and through parenting in general, to live fearlessly.  This life should be about love.  Eternal life will be about love too.  And we have two kids who love very well.  They want nothing more than they want to share love with us-- to be in communion with us.  They crave the community of our love. If we spend our lives craving love's community, we won't fear death: we'll see it as the entrance to a deeper kind of love.  My beautiful kids, and my selfless wife, teach me that.  I'm a pretty lucky guy.

Gracias

I suppose we could see the glass half empty and feel sorry for ourselves that yet again, we are spending another Christmas apart as a family and not at home, but we like to see the glass half full. If there's a time to be inpatient in the hospital, it's Christmas time with the abundance of visitors and volunteers and gifts for the kids. It's only been six days, and we've seen race car drivers, state troopers, dogs, good friends (Sarah and Cacki, love you ladies!), and even Santa. 

(This was Pia's first time meeting Santa. As expected, she was a bit wary of him and desperately wanted to pull that beard.)

What a blessing to see how many people make the effort to visit sick kids (may I never forget the gratitude and reciprocate generosity the rest of my life). Granted, Pia is still too young to comprehend the difference between cuddling with mom and seeing Santa for a few minutes versus just cuddling with mom all day, but I know and it makes a world of difference to have some visitors and people to chat with throughout the day. So, to all those generous people who visit the sick, thank you. It makes all this just that much easier. 

God give me strength

It's only been four days and my heart aches for my family. I just want us all to be home. There is no distraction strong enough to stop me from crying out for my husband and son. Skyping and seeing each other for snippets of time only makes me miss them more. God give me the strength I need today. I never thought we could get through Pia's first stint with leukemia when she was an infant, but we some how did. We will get through this.

the home front

I don't know how to post pictures here.

Which is good because I don't usually remember to take pictures.

And, until my mom took over the housekeeping today, the house was a disaster.  And the dogs were really hungry.  And yesterday, I got Max all the way to Mass before I realized he was barefoot.

All of this is to say that we really miss the feminine genius around here.  Not just "things being clean," but we miss the ordered, civilizing effect wives have on their homes.  All by ourselves, Max and I are reduced to a kind of frat-house existence.

I'm grateful my mom is here, and she's bringing order for us.

But Max and I are pretty dependent on Kate and Pia for a lot.  Practical things, sure.  But mostly, we depend on Kate and Pia for the kind of easy, comfortable communion that makes our family and home life enjoyable.  And we really miss them.  But we're getting along ok.  I'm taking the mollifying approach to parenting that dads seem to take when mom is away.  But since mom will be mostly away for the next six months, I'd probably better learn to feed Max something other than cookies and applesauce.

A date with my date

We are blessed to have JD's mom here helping us with Max and a million other needs as we get through Pia's first round of chemo. Today is dose three; tomorrow is dose four. And then we wait to watch her counts go down and then build themselves back up. Then, in a few weeks we can home for a few days until we start round two. Then we can have a proper date not in a hospital room. :)

In the mean time, bacon wradded dates and a lot of purell with my date will have to do. I love you, JD, and am so glad to have you next to me as we venture down this road.

The Good, the Bad and the Ugly

This is all so new and scary. There are moments of feeling overwhelmed and angry that Pia has to suffer. My heart aches when she writhes in pain when the nausea overcomes her. I wish I could take on the sickness for her. I know I can't. I know deep in my heart, there is good and grace in the midst of all the suffering. I know one of my responsibilities as a parent is to find it, embrace it, and model it. So, today we are being girly together and wearing all our favorite bows and hair ties and piggy tails.

 

We are taking advantage of every moment that Pia is feeling good. We sing and dance; we play and laugh; we smile at and talk with all the nurses and doctors; we cuddle and giggle; and we are rejoicing for the opportunities before us to keep offering up our sufferings for those more in need.

Under the Mercy

Under the mercy. There is something very lovely about the imagery of this phrase. To be protected under something, like under an umbrella from streams of rain and sleet or under a warm blanket on a fiercely cold evening as it lulls you to sleep. To be under His mercy--under His compassionate and kind heart and His desire to help us--gives me great comfort as we stand by and watch our little Pia undergo chemotherapy. I can wash my hands incessantly and follow every protocol for keeping bacteria and germs away from her, but there is truly nothing I can do to protect her from the cancer and chemo itself. All I can do is rely upon my faithful God's mercy and allow Him to shower her with it.

Today was day three of cancer diagnosis and day one of full on chemo. Tonight broke my heart as I held my little girl nauseous as the chemo drugs started to take effect and she cried like I've never seen her cry before. Thank God for the anti-nausea medications they have today. Thank God for the gentle and kind nurses who hold your hand and help you through the suffering you have to watch.

I know this is only the beginning of the nausea and the side effects of the chemo and that we haven't even begun to see our little girl lose her hair. This is only the start of our tears and heartache as we watch Pia suffer, but I know she is under His mercy and all will be well.