Sunday, April 24, 2016

My Biggest Fear

This past summer, while waddling around 35 weeks pregnant in the baby pool, I chatted with a dear friend of mine.  Well, we kind of had a conversation while she chased her little one and I scolded Eddie for splashing...She asked me if I was ready to be a mom of two kids.  I told her that I honestly was ready, except for one deep fear inside of me.  I was worried and had a terrible fear that I would have this baby (who is now Mary Elizabeth) and that Eddie's cancer would come back.  I was so worried, like couldn't sleep at night if I let my mind go there or had that sick to your stomach feeling whenever I thought about it. I told her that I was so scared of this only because I thought if I had a baby to take care of, how could I possibly "fight" it, or devote 100% of myself to this like I had in the past?  I broke down in tears, sitting on the edge of the baby pool, telling her about my biggest fear.

And alas.... it is here. We have sweet 8 month old Mary Elizabeth, and 5 year old Edward Michael, and his cancer has come back.  He had a "routine" 6 month MRI and eye exam a month ago.  We received devastating news that the tumor in his left eye starting growing again, and had grown 2 mm in the last 6 months.  The news was particularly devastating because, at his age of 5 years, he is almost "out of the woods" per se, because retinoblastoma usually stops developing erratically around the age of 5 1/2 to age 6.  The night before the MRI, Michael asked me if I was nervous.  I quickly said no.  I asked him the same question and he gave me the same answer.  We naively thought we were through with this dumb cancer, it was almost out of our minds, a thing of the past.  We were more nervous about Eddie's emotional state about going under anesthesia again, because he HATES it.  He cries, he begs, he screams, he kicks, he punches, he stomps his feet, he cries, he begs, and it goes on.  We learned a month ago that you can never really trust that dumb cancer.  Stable, stable, and stable.  For 3 and a half years, that dumb cancer has been stable.  And then in the past 6 months, while we have been having the best, most enjoyable, joyous, celebratory, time of our lives, this dumb cancer has been secretly growing....  

I am so mad, so angry, so annoyed, so flipping pissed off that this shit was growing inside of him as we were making memories, precious memories, as a family of four  He loves her, he really loves her. He wants to hold her everyday, he wants to kiss her goodbye and rub her on the head before he goes to school.  And sweet Mary Elizabeth, she adores him.  She looks for him, she laughs at him, she has a twinkle in her eye when he is around. Bath time is twice as fun, meals are twice as fun, errands (dare I say it?) are twice as fun because I am constantly hearing giggles and more giggles.  They love each other.

I am just so mad that this tumor might have been growing on Christmas morning while he was opening his presents from Santa and shrieking with excitement over every stupid thing he opened.  I am angry that this tumor was probably growing while he celebrated his 5th birthday with a soccer party with all of his buddies from nursery school. I am annoyed that while we were finally taking an elective trip, and elective vacation, our first vacation as a family of four to Denver to visit friends, this tumor was growing, as he was learning how to ski, on those beautiful mountains. Oh those beautiful mountains, old friends, new babies, kids playing, group dinners, late night conversations... Our life was.... starting to feel... normal, or well, better than that... it was starting to feel, amazing... and I just keep thinking to myself... the tumor was growing.

I hate you cancer, for making my Eddie Spaghetti so scared.  I hate you cancer for imposing yourself on our new blissful life.  I hate you cancer, because you are sneaky, and stupid, and poisonous and pathetic.  I hate you cancer, I really do.  

And yet, I decided, I am not angry at God.  Not at all, not in the least.  Because timing is everything, and God allowed this timing I think.... God gave us 3 and a half years of clinical stability.  He gave us 3 and a half years of Edward, sweet Edward.  And he gave us 3 and a half years to heal....And he gave us just enough time to be brave enough to try to have another baby.  And I am so grateful, and so thankful to God, for Mary Elizabeth.  I know all parents think their child is the best, but seriously she is the cutest, the sweetest, the most cuddly dreamboat of a baby you could ever imagine.  She eats well and she sleeps well (up until last week, but oh well, just bring on the craziness).  We thank God for sweet Mary Elizabeth and the joy she has brought to all of us, even Eddie who said he didn't want any babies in this house.  He loves her, he truly loves her.  I couldn't have asked for a better pair.  She is 8 months old today and he is 5 and yet they are 2 peas in a pod. Double trouble. 

And so Eddie went under anesthesia again this past  Friday and the the tumor did not respond to the thermotherapy last month.  In other words, it did not shrink.  It also did not grow.  Not good news but not terrible news.  Dr. Singh decided to switch from thermotherapy to cryotherapy.  Thermo is heating the tumor and cryo is freezing the tumor.  And so he performed cryotherapy on Friday.  Eddie was in pain the last couple of days and his eye was swollen.  We have to put antibiotic ointment on his left eye every 4 hours and he just about freaks out and runs away when we say it is ointment time.  We bribed him with quarters, and I may or may not have had gone to ToysRus and bought 50 bucks of Ninja Turtles crap to keep him busy.  We have to wait 4 more weeks to see if it worked or not.  They will either continue with another cryo treatment or make moves to use a radiation plaque.   

So until then, we wait.  And until then, I will try to keep my mind in check and I will try to stay as busy as possible.  I have to stay busy, otherwise I will go crazy.  And how am I supposed to discipline this sweet boy when I look into his beautiful blue cancer filled eyes.... You tell me that.... How???

I try to pray.  I really do.  I don't know what is wrong with me, but I can't pray.  I don't know why but every time I think about Eddie and I try to pray, my mind goes blank, like I am numb.  I just can't even think of what to say.  I don't even know how to start. Please God, or thank you God?  I don't know.... I HATE asking for prayers, because I feel like that is all I have done in the past 5 years.  All I say is please pray for us.  Blah, blah blah....  I WANT TO BE ABLE TO PRAY.  why can't I pray?  Why won't the words come out?  Why does my mind go blank?

Eddie prayed for himself the other night.  He prayed for his 'old eye'.... This boy, it's too much.... it's just too much, and yet... in the cancer world... We are the lucky ones.....


  1. Oh Katie,
    My heat aches for you and I can only imagine the anger you are feeling. I am amazed at the clarity with which you write. The fact that you have even named what you are feeling is a step in the right direction. By that I mean a step in the direction of strengthening your ability to handle this, because you will and you ARE. I too know the feeling of how do I pray? God knows your heart and Katie, it's our perception that we should pray like this or that. You don't need to put words to it-what you're doing every moment of your day is praying. He doesn't waste a single tear. Let us, your friends, hold you up, like Aaron and Hur held Moses' arms up when he grew weary during a battle as he watched Joshua fight the Amalekites . "When Moses’ hands grew tired, they took a stone and put it under him and he sat on it. Aaron and Hur held his hands up—one on one side, one on the other—so that his hands remained steady till sunset." Exodus 17:10

    I will continue to pray for you and Eddie Spaghetti, and Michael and Mary Elizabeth---and know that you don't have to have words to pray...the Holy Spirit intercedes for you as well. Jesus knows this situation intimately. I have opened myself up to new insights of late and one of them is that looking back can bring depressed thoughts and looking forward can cause great anxiety but being in the moment now, which is all we are promised, can bring a deep sense of awareness and peace. This is an impossible task for most people and most certainly for you right now, but it is something to think on. As I am sure you learned to do when Eddie was less than a kilo and fighting for his very existence every day, take it one moment at a time. Not even one day, but one moment. I know God helped you develop a sense of resiliency during that time. Use that now, sweet Katie, and know that there are so many others out here who are lifting you up. Love to you and peace,

  2. Oh Katie, there are no words I can write to make any of this better. My heart breaks for you but I am hopeful that you will get through this and the cancer will not grow! Cancer SUCKS!!! I am praying for you and your family. All my love, Andi

  3. No need to pray words, you can just pray tears and fears. God knows your heart and can read all that is inside it. Just give Him your heart. He will see Eddie there too. We are praying for you all.

  4. I so understand where this came from. And I am so glad that you shared it. I have had those exact same thoughts pass through my head and my mother says she had the same thoughts pass through her head. It is just craziness and you can not live your life ruled over by it. Much better to be happy.

    Denis Hightower @ Pittsburgh Cryotherapy