Go Blog Yourself

That old Donovan song has been running through my mind sine the first night of Tuesday’s diagnosis.  

First there is a mountain than there is no mountain, than there is.  

 

They’ve kept Tuesday’s room for us on the oncology floor, even though we’ve been in ICU for a week now.  It’s been a retreat when the ICU just feels too dark to handle.  Full of artwork made by her siblings and neighbor kids; balloons and stuffed animals.  All patiently awaiting her return.  A place where we can take Piper to talk about her sister and look at her things.  A place to get back to.  Who’d of thought we’d be pining for the oncology ward.  But I swear it’s like a fucking circus up there compared to the intensive care unit.  This is the darkest place I’ve ever been.  

Last night at 11:30 I had to pack up her room and move out.  There were four new children admitted and they needed her room.  I lost it.  I started to take her hand painted “Fill Better Soon” signs down and became swept away by the hopelessness of it all.  This is HER room!  They’ve been waiting for us up there!  Don’t they know we’re coming back!!  They are going to need to put me on a respirator next.  Four more admits? How is this happening?  Four more families crushed by this new reality.

I fell asleep in the chair for a few minutes last night and dreamt that her hospital crib was full of hair.  Piles of it.  It was dropping off her head in huge clumps.  It was like someone shaved a dog in her bed.  

They gave me a keepsake box with a butterfly painted on the lid, to keep some of her curls in.  I wonder what her hair will grow back like.  Everywhere we go, people comment on the girl’s matching curly hair.  Axel says he hopes it doesn’t grow back blue.  Spencer says he’ll shave his head too.  But only kind of short.   I don’t think that really shouts SOLIDARITY but his heart is in the right place.  

Today we continue to pray for pee.  Lots and lots of pee.  Everything is hinging on her passing these extra 5 liters of fluid.  5 liters.  Can you even imagine?  No. Of course you can’t.  You can’t imagine any of this.

Day 5/5 of cycle one chemotherapy.  

I’m waiting for transfer to come and get Tuesday for a MIBG scan.  Yesterday her tiny, swollen body was filled with radioactive isotopes so that she can be scanned today for all traces of cancer.  The isotopes will adhere to the cancerous cells and then light up on the image.  This will give us a foot print of the cancer so that all involved are  able to chart the shrinkage of the tumors.  Tuesday has a large tumor that started on her adrenal glad and a 2nd small tumor around her vena cava, the main artery in to her heart.  Our idea of good news has been drastically altered, but the good news is that although her Oncology team was expecting a minimum of 40% cancer in her bone marrow, she in fact only has 1%.  This gives Tuesday lots of nice healthy marrow to harvest for her bone marrow/stem cell transplant which will take place later this year.  After 6 cycles of chemo.  After a surgery to remove any remaining tumor.  After radiation.  After countless tears.  After. 

 We will all survive.  Sweet Tuesday will survive.  Her nurse today?  Might not survive.  I’m thinking of slamming her with the IV pole.  

Your prayers are being felt.  We are staying strong and when we’re not we at least are breaking down on opposite schedules.  We are blown away by the love and kindness that is being showered on us.  Please continue to pray for our children.  Piper is lost with out her twin.  Her brothers are afraid that they are going to get cancer.  They are all finding comfort in each other and for that we are thankful.