A lot changes in only five months

I have a confession. I haven't written on here in over two months because I find myself most nights telling myself: "you're too exhausted, write tomorrow."  Tomorrow turns into the next week. Next week turns into next month. And next month turns into two months. But, here's the truth, who isn't exhausted at the end of the day? Enough of my silly excuses, here's our latest update. :)

Pia had a short and sweet round four of chemo. In the hospital for two and a half weeks and home for two weeks--two lovely weeks of family time and Easter celebrations. 

 Our Easter doll

 

Then Miss no-immune-system got a nasty virus as she started round five. High fevers, antibiotics, no sleeping (the bane of hospital living to me--I really like sleep), runny nose, sore throat--you know how it goes. Crummy colds and viruses. Blech. Now, she's off chemo precautions and we are waiting out her neutropenic stage to go home for a bit of rest and reprieve. Hopefully only one more week or so in the hospital but one never knows. If I lean toward a more conservative two more weeks in my head, then I'm pleasantly surprised when it's sooner. I learned that the hard way in round one, two and three. :)

 

Fever free and chemo finished means freedom to go outside on the patio!

A lot has changed in the last five months. Five months ago, Pia was sitting up--still a bit wobbly, max scooted everywhere to move around despite our bazillion efforts and therapies to move him toward crawling and walking, I still had boxes unpacked from our move (eh, okay, anyone who knows me, knows I still have unpacked boxes now because I hide them in closets and hate unpacking), and exactly five months ago we were celebrating Pia's first birthday and cancer was not on the table. Five (sometimes short, sometimes painstakingly long) months later, Pia can crawl faster than I can keep up with and can cruise along anything she can pull to stand on, max crawls anywhere he can get himself into trouble and walks a few steps at a time or with a walker, the boxes will unpack themselves--I'm fairly certain of this, and most importantly: we beat cancer. Pia is in complete remission still--not a single darn abnormal cancer cell to be found in her bone marrow-- and we only have one round of chemo to go.

I guess you never know what's going to happen next in life. There's no real planning for it either. It just happens and what matters is how you respond to it. You can either face it with joy and courage or turn from it with fear and anger. I hope and pray we can keep facing life's adventures with joy and acceptance.

Life can be very beautiful--when we see the beauty, the good, and the joy hidden behind the thorns and hardships. 

Update and a brag

Update: We're back in the hospital after seven glorious days at home. Pia started chemo last Thursday and finished her four days of chemo Monday afternoon. Now we wait for her blood counts to drop and then build back up--three-ish weeks. 

The most exciting news is that Pia is fully in remission. They found ZERO cancer cells in the bone marrow! Which means: the chemo is working as expected and we are well on our way to recovery. Three chemo treatments down, three to go. 

Now my brag: I have the most amazing family and the most beautiful children. They take my breath away literally every time I see their precious faces. Here's my proof ;)

     Chauffeur for the day

     Playing with his shadow

    Singing

    We get the most awesome packages all the time

            Row, row, row your boat

 

     

       Two of the best cuddlers around

SEE, I really do the most blessed life EVER!

Round two complete

We will be officially done with round two tomorrow!!!!! Tomorrow!!!

We are coming home tomorrow for a few days! Pia's neutrophil counts are finally inching their way upward and her body is FINALLY recovering from this round of treatment! Pia has an immune system again! Not much--but an immune system again! (As a side note, every sentence does deserve an exclamation mark because I truly couldn't be more excited!)

Yippee!! Hooray!

Thank you

Thank you. Thank you to everyone who has been praying for our family, who have come to visit us and keep us company at the hospital, who have sent us cookies and gifts and cleaning ladies and blankets and meals, who have listened to us cry, who have encouraged us at low points, who keep calling even when we don't always call back, and who have surrounded us with your love and generosity. There is no real way to say thank you that adequately expresses our sincere gratitude for how loved we feel. But, we are so grateful and couldn't be getting through this without each person that has loved us and prayed for us. 

This has not been an easy road thusfar and it isn't going to be any easier in the 4, 5, 6 months ahead. We both feel like we are barely keeping our heads above water. I don't say that lightly, nor do I say that to sound dramatic or communicate that we feel sorry for ourselves--we fully see the cross in front of us and embrace it with all our being. We are grateful for it--for in the carrying of this cross, we will find sanctification but that doesn't make it any lighter of a cross or easier to keep putting one foot in front of the other up a very long road.

There are many people who carry even heavier crosses that we couldn't even imagine carrying. We also know life won't always be like this; that some day we will look back and let out sighs of relief that these days are far behind us. But, in this interim period, we know we are weighed down. We feel worn and broken. We know that each day we have only enough energy and strength to get through just that one day. It feels as if we don't seem to have the strength to give back to those around us and be better friends and pour our love out to others. All we can do right now is say thank you and keep offering our suffering and Pia's suffering for each kind soul that keeps loving us and each soul that needs our prayers. 

Not every moment is hard. We have moments of joy, of laughter. But, those moments aren't as plentiful as they used to be and that is just our reality right now. And, that is okay. It's okay that we don't smile every second and that we cry more and that we are struggling. This is our cross and it isn't going anywhere for a while. 

Please pray for Pia today

This week has been boring. Thank God. They are always telling me here, "boring is good. Being the first one the doctor sees in the morning is not."  Boring means no fevers, no infections. So, this week Pia and I have just been trotting along, doing our own little routine each day. We get up, brush our teeth, make coffee, make a bottle of milk, the CNA comes in for vitals, the nurse listens to Pia and tells her how cute she is, we FaceTime with Max and Jd and Faith while we drink our coffee and milk (well more like just milk and then cold coffee later on because I tend to forget it's there), and then go about our day of playing and eating and napping. Every night we say a little prayer of thanksgiving for another boring day.

The reason they keep us in the hospital for so long after chemo treatments is because the blood counts and immune system slowly go down until zeroing out and the risk of infection goes up. Not only does Pia's immune system reach zero and could more easily pick up a virus and not be able to fight it off, but she can get bacterial infections more easily from her own internal flora. She can develop mouth sores (therefore the mouth brushings we do twice a day), rashes, yeast infections, and fevers (which could mean bacterial infections that need to be treated immediately). All week, everyone here has been waiting for Pia to hit zero neutrophils (immune fighting white blood cells) and waiting for a fever to pop up (indicating possible infection). I was seriously hoping for a get out of jail free card this cycle and a pass on infections since nothing so far.

And this afternoon, boom, a fever. Boring has now ended. They attend quickly to fevers here. Nurses come in, draw blood cultures from each lumen of her central line, phlebotomy comes in to draw blood from the vein, the attending resident checks Pia over, the hematologist/oncologist makes a visit to check her over again, they start antibiotics, and continue monitoring her fever while they wait and watch the blood cultures for any developing bacteria. It's all so fascinating.

Long story, short. Pia has a fever. Boo. Such as life with cancer though, I suppose. Please say a little prayer for her today when you read this. We hope it's nothing too serious and doesn't develop into something serious but you never know. Thank God for great healthcare professionals and a great hospital.

It's okay to cry

I keep trying to hold it together and be strong, but the truth is: I'm not. I'm a mess. I have an inbox full of unreturned voicemails. I ignore phone calls because I'm afraid to be weak and let people know how much I've been struggling lately. I've attempted three separate blog entries about my sorrow but erased each one not wanting to share my pain. When I look in the mirror, I feel like I've aged ten years. I cry all the time. I count down the minutes and hours until each day ends. I rarely sleep.

I miss my life and my family. I miss companionship more than anything. I--we--were not made to live alone without community and family. The loneliness of the hospital weighs heavily on my heart this week. The reality is: this sucks. Cancer sucks. The effects of chemo suck. Living in a noisy bright hospital away from your cozy, warm home and your beautiful family sucks. Being lonely sucks. Missing your son grow and learn sucks. Not being able to hug your husband sucks.

So, tonight I cry to relieve my stress and sorrow. And that's okay. 

choosing life

I've been thinking all week about what I might say about the 41st anniversary of Roe vs. Wade.

But I really hadn't come to any conclusions.

Life is...hard.  And complicated.  And sometimes very sad.  And it seems that America has largely accepted that abortion is a regrettable solution to hard, complicated, sad realities.

But for me that's not enough.

The lesson of the past year for me is that the hard, complicated sad realities are also the ones that evoke greatness.   And beauty.  And love.

 I'm tired of accepting regrettable solutions.  We're made for greatness.  We're made for beauty. We're made for love.


 I want more of those things.  I want less compromise, less mediocrity, less violence and less depression.  I want us to choose life, and to live it fully.

Joy

There is no greater joy than fulfilling the vocation you were made for. Bouncing around the house with a baby on my hip and a goofy toddler splashing in the dog bowl and waving his tambourine around while dancing are what fill me with utter joy. Making dinner (well, more like looking in the fridge and determining if dinner can be made) and attempting to clean kitchen counters and throw away garbage can seem so dreary and dull at times. But, today these were the moments I've been pining for over the last month and the ones that keep making me cry with joy today.

Before Pia got sick, I missed working out of the home and wondered if there might be some opportunity out there for me to work a little more. I missed having other adults to interact with, I missed the meetings and busy-ness of working in an office, but mostly I really missed the work itself. I loved being a social worker. I loved making a difference in the lives of others, or at least trying to make a difference.

Today, I've been reflecting on how much I never want to leave this house again--metaphorically speaking. (Although, the cold weather and ungodly amount of viruses floating around have been literal deterrents this week). I used to pine for nap time or when the husband would come home so I could take a break. I was foolish. Since having to be away from Max and JD and from being a homemaker, I've grown to miss it all so much. I honestly have no idea how working moms do it. How do they withstand that yearning to be with their little ones and balance focusing on their task at hand in the job place? I have a lot of respect for you working moms out there!

I'm trying really hard today and the rest of this week to enjoy every moment before heading back to Omaha. I'm trying to not dread Monday. I'm trying to soak it all in. Before Pia got sick, I wish I had not taken those opportunities to dance around the kitchen with Max and tickle Pia and sit in front of the fireplace with JD for granted. I wish I had not wished for diffferent work. And I pray that from this day forward, that I never yearn for something diffferent but enjoy every blessed moment I have in front of me--including each day we have in the hospital to help get Pia healthy and each day at home I have to love and care for my family. For this is what I was made to do. 

If it can go wrong, it does

It's Sunday afternoon and we've been discharged from the hospital for a week. I have our cart all packed up with, well, an exorbitant amount of belongings (I'll need to pare down for next week). I wheel the 50 pound bugger down to the parking garage, find the car, and load her up. All stuff neatly stacked in and ready to roll. What?! The trunk won't shut? Are you kidding me? So -5 degrees is too cold to get the stupid temperamental latch to connect to the trunk? Come on! It was at this point I just lost it. I've been in a hospital for a month and completely unprepared for this ridiculous cold weather. I'm standing in front of the trunk screaming at the roof and crying with frozen hands and frozen little toes in my plastic flats, "seriously, I just want to go home! Why does it have to be so hard?" People walk by, shielding their eyes from the lunatic screaming at a car. Security then shows up. Either he's here to help or escort the crazy crying lady out of the hospital garage. It's always the little things that set me off. It's not the cancer or chemotherapy or being away from family for weeks at a time or living in a hospital that break me down. It's the little things that I expect and rely on going smoothly while everything else around me is chaotic. 

Needless to say, things eventually worked out. A few laughs later, tears wiped away, and a little wd-40, the trunk latched and Pia and I turned on our heat full blast and made our way back to Lincoln. And hopefully in a day or two our family can be together when the guys recover from the stomach flu. Seriously, when it rains, it pours in our house. Ha. We spend a lot of time laughing. No point in whining or complaining or crying like a crazed lunatic (all the time). ;)

Love and miss you, JD and Max!

Grateful for security cameras that spot crazed crying moms,

Kate

Round One Complete

It is truly never boring in a hospital. Pia had the floor buzzing and doctors and nurses running around. Apparently, her central line broke loose (when you combine low muscle tone with a crazy active wee one, a line can snag loose in the middle of the night) and the fluids running into the central line puffed her up into pretty much the state puff marshmallow man from the neck and shoulders up. This in turn, caused more pressure on the airways--as if croup wasn't enough for Miss Pia. A few X-rays later and one central line removed, her swelling decreased and breathing improved--improved just enough to let us go home tomorrow. As a little treat, we even get to sleep in until 7 tomorrow when they will draw blood instead of at 530am! I feel like we just won the lottery!

Packing our stuff up and unpacking for a few days to only pack it all up again seems like a cruel tease, but we are trying to see it as a vacation. For the next six months, we get five vacations. Who gets to vacation that often in one year?! This lucky family!

This lucky family just finished round one of chemo and only has five more to go. We are blessed and never want to stop reminding ourselves just how loved we are by our Father. We offered our stressful day for all the intentions recently sent to us.

Grace in the Cross.

When we're baptized we become a part of the body of Jesus Christ-- we share in his life, in the mystery of his suffering and death, and because of his resurrection we share in the eternal life of the Blessed Trinity-- the dynamic love of God which will last forever.

Christianity means that we can love with God's own love.  It means that we can become a part of God's own life.  And it means that our suffering has meaning-- that when we suffer, because Christ suffered, our suffering can be transformative in the lives of other people.

How cool is that?

---

We were pretty young when we got married.  And we both had a lot of growing up to do.  So as the years passed and we found ourselves unable to conceive and bear children, we really suffered.  We felt  alone and unhappy and very often we turned our unhappiness in the wrong direction.  We had some very hard years.

But eventually, we realized that our infertility was a gift.  It was a cross, and a heavy one.  And because we carried that cross, we could offer it with Jesus Christ's cross for the salvation of the world.  Our cross made us missionaries, we decided-- suffering, sadly, and offering that suffering to Jesus.  We hoped that our suffering could become a kind of a prayer, and make us one with our Lord.  We hoped that some good might come out of it.

When you see a mother with a bunch of kids, and she's working hard for them, and money is tight and everyone's tired, the cross is apparent.  But our cross of infertility wasn't like that.  Most of the time, it was hidden.  Unless someone thought to ask, we looked like a lot of other people-- young, unencumbered, enjoying some modicum of success, and enjoying a little bit of disposable income.  Our sadness-- our cross-- was hidden.  We decided that maybe God had called us to hidden suffering-- that we could offer our cross quietly, unnoticed, like cloistered Carmelites, whose life of penance is hidden from the world.

We took a lot of solace in the kind of Carmelite vocation God had given us.  In fact, the knowledge that our cross had meaning gave us joy.  We weren't any happier, maybe, but we could laugh in the joy that God had given us something very special we could offer to the world.

--

Over the past few days, especially through the wisdom of our friend Faith, we've realized that Pia Therese is called to a kind of Carmelite vocation too.  Tucked up in the sixth floor of Children's Hospital, our little girl is carrying a big cross.  Leukemia is awful.  Chemo is awful.  Pia is suffering.

But Pia is a Christian.  She is baptized in the water of faith.  She is a member of the Body of Christ.  She can love like God loves.  And her suffering has meaning.

We want to help her be sanctified in her suffering.  We want to help her love as God loves.  And so we want your intentions.  We want Pia to be able to offer her suffering for you-- to pray for your needs, your desires.  To offer her cross in union with the cross of Jesus Christ.

We got a little notebook.  We want to record your intentions, and keep them in Pia's room, above her crib.  When chemo is terrible, or she gets a high fever, or she can't sleep more than an hour at a time, we want her to be able, inasmuch as she can understand, to offer those things for you.  Because Christ did so much more than that.  Christ offered so much more than that.  And it is a grace--for us, and for Pia-- to be able share in the cross of our God.

Please email us your intentions.  You can send them to kateflynn17@gmail.com or jamesdanielflynn@gmail.com.  And please feel free to pass this on.  There's a lot of grace in sharing in Christ's cross-- and we want to share that grace with you.

God bless you.