If there is a God, she has a British accent.

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The Christmas decorations in the Massey Cancer Research Building at the Medical College of Virginia in Richmond were lame.  That’s what I thought.  Christmas up to that point had been a game of buying the maximum amount of joy with what little money was left over from my husband’s twice weekly paycheck after living expenses.  It was already hard enough to balance the love you have for your children with the grading scale of presents every year.  There was no holiday bonus. There was no anniversary trips.  We marked these occasions together and betted the kids would just have fond memories by the time they reached their mid 20s.  After all, isn’t that when most people come to terms with having a less than stellar childhood?  If nothing dramatic or off the charts happens you are free to move on with the ambition of giving a better life to children you may one day have.  No one wants to be judged as a parent by Christmas gifts.  The day the surgeon refers you to a group of oncologists is not the day you want to reevaluate how much happiness you are responsible for in your children’s lives.  Believe me. 

“This is for you, Nicholas.”  An unwrapped, unopened Sony Walkman CD player.  Red. Thanks. Uh, Thank you very much.  Still, he manages to be polite.  “Would you like some pizza? It’s pepperoni! Delicious, I must say.”   I think this woman is batshit crazy.  She has curly graying hair, crooked English teeth, a played up (maybe not, but my cynicism is in overdrive at this point) British accent.  She is wearing a smock.  Well, of course she is, it’s a damn children’s hospital.  It says her name is Jackie on the shoulder, written in bottled glitter paint.  She’s a little short, aging.  Maybe she was taller 15 years ago.  How long has she been here?  And why don’t accents fade.  I must have rolled my eyes one too many times.  Refuse pizza from the fairy lady and she will pursue you. They must learn that in the back room somewhere.  I thought, “she must be well practiced, we are an easy mark.” It’s almost Christmas.  The decorations will probably come down after the break that happens in appointments.  Surely, I assumed, hospital staff takes a break.  Like the school, like the banks.  Right?  Everyone gets a break for the Christmas fun happening out there in the city.  There’s hallways with no lights.  The cleaning crews have extension cords running down the center of rooms.  It smells of windex.  Our daughter is restless.  She’s an infant, an eternal infant.   I had already had a heavy dose of what fairness is when she was born, seizing and writhing.  Cerebral Palsy would be a daily reminder of exactly how fair life could be.   This place, these people, the diagnosis is completely beyond her.  For the next two and a half years, she would travel the halls of MCV, walk the floors through the night hours, sleep in my arms, oblivious to the reason we were learning exactly how unfair life could really be.

“Are you ….Mother?” Jackie so Mary Poppins’d me.  Yep, that’s me.  She wanted my name.  For what?  How many more people are going to pretend to be my best friend while we are here?  How many of these nutty Jackies are there?  For fuck’s sake, she’s a volunteer.  I realize we probably have that deer in the headlights look, but maybe leaving us alone would be good too.  (I came to recognize that deer in the head lights look over the next two and a half years.  How do you smile at people whose teeny little baby has just been diagnosed with a tumor on some part of their head?  What kind of universe creates that scenario? )  

“May I hold your hand, dear?”  Oh my god.  Just hold hands and she’ll go away.  Just think about the awful pizza she is trying to pawn off on you.  Maybe she has a quota of pizza she has to give away and that’s why she’s the only badged person around.  “Of course,”  I offered my left hand.  She opened my palm with her wrinkled white hands, very slowly.  The room kind of fell away.  I fell away from my family and she locked eyes with me.  She had reached into her smock with it’s giant pockets and retrieved something. “Close your eyes, dear Mother.”  I complied.  Ok, she’s maybe kind.  I guess this can’t be so bad.  It’s certainly not creepy. Her hand pressed into the center of my palm and she closed my fingers.  I didn’t feel anything in my hand.  Oh, she’s good.  I am not going to cry.  There’s no reason.  We have to finish this appointment.  It’s been a long damn week with the surgeon and Nick’s biopsy was hell enough.  What an insult.  When people get these serendipitous series of events that culminate in glorious outcomes, we were sitting in the dark waiting room at VCU while a surgeon confirmed a Ewing’s Sarcoma that should have been ruled out many months before.    “Now, in your mind, make a wish.”    My eyes were glued shut.  Tears falling over both of us.  I wasn’t breathing, just crying.  A wish.  Yeah, I wish for my son to come out of this on the other side alive.   She offered me a gentle hug and went away.   Glitter, she had put glitter in my hand.  You know, that stuff that comes home on your kids art work?  That sticks to everything?  That follows you around and shows up in the least convenient moment?  THAT stuff.  Over the next two and a half years, I would find a single speck of glitter mostly when I needed to find it.  It was the only reason I was ever able to smile at a strange mother, holding her tiny baby, coming down the elevator with that deer in the headlights look.  The glitter on her shoulder, on her husband’s sweater….even in July.  Cancer got them.  The fairy got them too.

I learned , perhaps, more than some med students learn in those 2 years.  I came to recognize the pitfalls of treating childhood cancers from several points of view.  I made new friends….that was the rule.  We are all on a sinking ship, might as well be friendly. I watched marriages wreck into the rocky shores.  I watched my own son beg to stop….he just wanted to stop.  I saw police activity in the ER when shootings occurred in the parking lot.  I learned how to get from building to building down hallways without having to step out into the filthy streets.  I came to love the food trucks, hate insurance and damn anyone who would stand in my way where my sanity was concerned.  I witnessed horrible policy directives, first hand.  I wasn’t allowed to stay overnight in the hospital with my son. “That’s the rule.”   Despite the unused 3 rooms with brass plaques on the doors that read, “Donated by McDonalds.”  Yes, the same McDonalds that was so conveniently located in the lobby of the largest Childrens Cancer Treatment Facilities in that part of the state.  The same facility that offered Donut Tuesdays!!!  for breakfast on Tuesdays. I never could make them understand the absurdity of that.  I did get them to agree to take canned soda off the galley menu for Pediatrics.  I wish I were kidding.  I wish I was remembering it wrong.  I wish I hadn’t grown weary of attending funerals.  Joshua’s was the last funeral.  He was four.  He looooovvvveeeed to see Addie.  Right up to the very end of his pallative care, he was happy to see Addie.  Joshua knew nothing of the unfairness, having Down’s Syndrome offered him the ticket out without the fear.  Leukemia took Joshua and his was the last funeral we would attend.  We started being able to tell who was next.  Like that awful cat that comes and cuddles up to the next recipient of the boat outta here in the nursing home.  I was not someone you wanted to be friends with.  Reality was smacking me upside the head and I was not interested in the fairy way to deal with it.   Nick assumed the responsibility of monitoring nurses and doctor’s hand washing and sterile procedure habits.  His life was on the line and no one was allowed to dork with it.   I got to tackle his nutrition.  No easy feat when he was vomiting 25 of 30 days in a month.  The 2 week rotation in hospital was the most difficult.  I had to pack his food in.  Social workers regularly gave me a talking to.  They were not amused at me squeezing essential fatty acids into his mouth.  But, they also couldn’t understand how he was avoiding the need for transfusions either.  Most of the time, he held his own, despite the 179 stapled incision to remove his right illium.  Despite his dad’s job loss after 8 months.  Seems we had breeched the 1 million dollar mark.  The company was threatened with letting the employee go or the whole group would go.  Look in the dictionary.  Look up the word unfair.  My picture is there.  I am standing at the pharmacy counter in the middle of night, having been discharged from the hospital in the pouring rain.  The Pharmacy Tech is asking for $4,625.00 for the rescue injections the physicians have prescribed.  They cost $462.00 a dose and they are required for the 10 days following chemo.  Chemo ended that afternoon and CVS wants that ridiculous amount of money, in cash.  PT mentions, they also take Visa and MC.   Yes, but those got run up driving the hour to and from the hospital.   There are no free medicines in cancer treatment, in case you were wondering.  

Did those few paragraphs just run together like I think they did?   That’s exactly how it happened.  One minute, you are watching your kid on the soccer field, trying to negotiate what was for dinner and the next you are threatening a CVS employee for drugs you know you can’t pay for.  

December 2001, we stopped and paid close attention to what was going on around us. The quiet of the hospital is not something you can explain to people.  The absence of those you expected to help you is deafening.  The dinners dropped at home by friends becomes a saving grace.  The fostering of our new dog by friends, remarkable.  The falling away of our church, perhaps inevitable.  I stopped believing in God then.  It took a little while, but I came to see that if God could, he would light a fire under someone in that parish of 5,000 people.  What happened instead, was that we became invisible.  Our families didn’t visit.  3 Cards came.  A woman from a friend’s church in town felt the need to buy us Christmas presents.  She also felt the need to bring her kids over and run amok in our already fragile house.  I swear you couldn’t make this shit up.  We spent every dime we had.  Borrowed against our house and ultimately would lose that house to the falling economy in a short sale.  Life became , to us….what it was NOT.   It was not presents, or gas money, cell phones, medicines, insurance.  It was warm food dropped off in the snow by Glenda and Mimi. It was the constant worry that one of our other 4 kids would need something as big as cancer and what would be left to give?  It was knowing our dog was safe at Cathy’s. (even if she was driving them batty.) It was my Addie’s cognitive deficit, she would never really know what a mess this was.  Life was worry, real worry about the balance between living cells and dying cells.  It was about understanding the danger in a gram negative soil borne bacteria.  Life was watching my son breathe but once in an entire minute.  Life was the understanding things just aren’t fair.  Life was the late night phone calls to Joanne.  It was the lack of thought that we wouldn’t all pull out of this.  Somehow.  

Remember, I had wished it so.  And Jackie promised.  There, if there was a God, there she stood, dressed in a blue smock, full of glitter.   

Towards the end of our 2 and a half years, we had grown accustomed to the hallways and the staff.  We had all set our lines in the sand and learned to respect each other.  I spoke to the incoming class of residents that Spring of 2004.  This was something I was surprised to be asked to to and as ill prepared as I was. I didn’t know what to do with my hands while I spoke.  I didn’t know where to look, the auditorium was dark, I could only make out silhouettes of lab coats. I told them how important it was for them to appreciate the role family plays in a child’s experience. I told them how honored I was to meet each of them in our room, no doubt we had seen every one of them at some point. I told them I hoped they would remember that the most important feeling of having cancer is to feel worthy of making out the other side, alive.  I wonder if my words still ring in anyone’s head as they go on morning rounds.   One physician stands out among the pack. She was a mother of 3.  She understood the mama bear syndrome, perfectly.  She began her undergrad studies at the age of 48.  We met on rounds one day.  She knew what it was all about.  

Towards the end of our time there, we attended Jackie’s retirement ceremony.  It was held in the HEMOC Clinic.  She wasn’t sad to leave and we were happy to send her off for some time of relaxing.  How did she look these newly bruised families in the eye and offer that kind of hope?  How did she do that for 35 years?  What the hell was in that glitter? Image

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About kat9090

Hafu (Half Japanese), Late Discovery Adoptee, Sister, Mom, Daughter, Wife, I cook, look back, look forward, lean left, drive a lot, write a lot, wish a lot, I will be square with you if you are square with me. Find me on Instagram @shojikat and Twitter @biteme9090
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25 Responses to If there is a God, she has a British accent.

  1. laughingelk says:

    Wow, Kathy; simply wow.

  2. beth kozan says:

    Good job, Kathy! Some day we will talk more.

  3. beth kozan says:

    I just read the rest of your posts that are listed here. Bless you, as you let the words flow.

  4. Devon says:

    I second the wow…pretty much the only words to say. This is brutally beautiful.

  5. This is the first post I have read of yours and I am completely blown away…by your story and the wonderful way in which you tell it.

  6. Love learning moe details of your journey , thanks for sharing and I hope you can feel the healing from putting the words out.

  7. Came here from Elan, and I love the breathless style you have. I am so sorry this is your story to tell, but thank you for the shake down on what reality is for so many. Thank you.

  8. Jenny says:

    Beautiful. Heartbreaking. And so perfectly told. Thank you for sharing this. I have a friend with a ten year old battling a Ewing’s sarcoma. Sharing with her.

    • kat9090 says:

      Thank you for reading. As cancer goes, it is relatively rare in children, and then Ewing’s is rarer yet. My son’s was in his pelvis. His right hip was resected. There’s no replacement or prosthesis, so he lost large muscles as well. I hope I can move through this soon and share the bigger story that is Nick. He’s my hero. I wish the best for your friend.

  9. suzzann says:

    Thank you. You so eloquently put what childhood cancer families feel and go through. I wish I could tell others or write how I feel and how our family deals everyday with this evil. I truly think if you are not in the situation you don’t get it. I think if everyone reads this they might get it even if just for a little while.

    • kat9090 says:

      It’s not something I would wish on anyone. Lucky the family that has no experiences like this! and compassionate are the ones who can see without looking away. The worst part of it all is the isolation. Life goes on around you and you are forced to stand still.

  10. Paula Cho says:

    So well said Kathy. I just re-lived a year of my life reading your blog. I lost a man that was very dear to me to cancer seven years ago. I only had to deal with his illness and the hospitals and the procedure after procedure after insurance payment after applying for disability after getting married 15 days before he died, for 5 months. It was totally all consuming. Like nothing else existed. You brought it all back very vividly. Thank you. Right now I am proud. I think the main reason I was put on this earth was to take care of him while he was sick. I am proud of the fight I fought for him. I am proud of him for getting past the pain, the denial and the anger and the grief and going into the next world finally so peacefully.
    Thank you…I pray for you and your family and Jackie with the glitter. I pray for you to have rest and peace.
    Hospitals are the worst place for sick people. Why did the Doctor seem to always wait till I was gone to come in to talk to him? Why do they push around those noisy carts so damn early in the morning and wake everyone up?
    I flushed my phone down the toilet in the emergency room, it never had a chance. Hospitals do have good ice! peace be with you.
    Just so you know, there is life after illness. However it defines itself, it’s OK, really.

    • kat9090 says:

      I’m sorry for your loss. Life does go on. Time keeps trucking. I lost my mom to a brain tumor 7 months after my son stopped chemo. It has a way of defining life for you. It is OK. Thank you for reading and sharing.

      • Paula Cho says:

        How is your son now, and your daughter??? I’m sorry I went on about myself, just relating. You brought back that frenetic way of life that takes over. You have a very magical way of expressing yourself. You helped me remember, thanks!

      • kat9090 says:

        Well, thanks for asking….physically, its a struggle. He’s as tough as you might imagine, despite that xray. Daughter is tough in her own way. Life with Cerebral Palsy is another blog post,full of its own frustrations, hopes, surgeries and ballet. Today life is good, I stay in the today. PS no apologies for sharing your view…when it happens to you, it happens to YOU. I get that.

  11. Maggie May says:

    Thank you for sharing this…beautifully written. I linked it on my blog last weekend.

    • kat9090 says:

      Thank you for reading and linking! I appreciate kind words! I shared your blog on twitter and fb. Thats me in your comments, Kat Adopted…. (I need some consistency!)

  12. catijoefarm says:

    Jesus. I have no words. You are one fantastic writer and one kick ass woman/mom. Your son is one of the reasons I have my head shaved in March. Blessings to you and your family.

    Cathy

    • kat9090 says:

      OMG, I will tell him. ever since I read your post abt St Baldricks, I have been thinking about Nick and how beautiful he was sans hair and eyelashes and eyebrows. Just, so unencumbered by hair.
      Thank you so much for reading….and shaving!

  13. It’s me. And maybe you won’t read this. I remember all of this all too well. You really do nail it and I remember some of those stories (you used to tell them to me). You have a true gift as a writer and if you EVER get the time to pursue it professionally you should. I love you, always have and always will. Me

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