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.