Tomorrow will be our 30th Day in the Hospital. It is time to address the food situaiton.

Busy busy time.  Lots of days and nights when there are many many disruptions. We are both exhausted but knowing that Ellie Mae is working gives me time to focus outside of this room. 

The hospital food has not been forgotten nor neglected.  I have been silent about most of the food because I have been talking and watching and thinking for the last month.  I have been questioning the staff about what they have observed over the years.  I have asked them what they eat in the cafeteria. I have asked them how much food they fix the children on the floor and when.  I have talked to the poor beleaguered parents about how they survive being in patient. I have talked with the children themselves. 

The kids like the sound of the food but the reality is pretty dismal. 

M-E was pretty healthy in Cancer World  terms when we moved in.  She had a celebration dinner at Rover's and maybe we had a bit of mostly legal sushi.  She was eating when she came in here and has continued to do so.   I managed to order a few things from the kitchen that worked. It took a while but she was given great Oreo shakes, berry smoothies and some cheese cake when that seemed like the thing.  The guava juice, ginger ale and ginger cookies came when we asked and made things easier. The real mashed potatoes, the oatmeal, the creamed corn and some other things.

She does not even want to try anything now.  She has been burned too many times by things that are delivered.  I don't want anyone to think the people from dietary who work here don't love these kids and try to feed them.  They have gone to great lengths to figure out what to do.  Karen H. went as far as to raid the catering kitchen and bring the plate of cheese cakes.   Kim has brought Mary-Elizabeth food from outside vendors that have worked.  Andy the snack guy went and bought her Kettle Corn with his own money.  The day to day staff clearly care and are forever disappointed when nothing sounds good to the kids. 

The caring stops there.  No one could look at what is served to our children and say that management cares.  If they care they are unable to do anything about it.  They don't have the intestinal fortitude to make the necessary changes.

This very prestigious institution is failing at every level to feed the children on the Seattle Cancer Care Alliance floor of Seattle.  I should say that they know it and have plans in 2014 or so there will be a new kitchen.  There will be new space.  There will be more staff.  There will be on-demand food.  So until then, too bad, so sad.  We are out of luck.

Now it is a hard job to feed Hem/Onc kids.  They are sick, really sick.  There are days that they want nothing and can not eat anything.  Then there are days that they are hungry and multiple meals are wanted.  It is very important that the food that does go in a child have nutrition.  Good Nutrition. Real food, fresh food, freshly prepared food. Fresh vegetables, fresh organic meat, fresh prepared salmon, home made cookies, real home made soup, fresh salads.  Food that is delivered at the appropriate temperature and prepared in a safe way.  None of this is available here.  This is the land of processed food.  Nothing is prepared fresh, the ingredients are poor second class quality and since no one eats it then who cares.

The parents care.    There are constant trips by familys out of the hospital to buy food.  Familys bring in food.  It is pathetic. It is amazing and counter intuitive.  We are already under stress.  I make trips almost every day to some place away from the hospital to find something for Mary-Elizabeth that will help her regain her health. 

I am so so tired.  We have been through so so much.  My daughter needs me to be here while she takes her meds, has transfusions, has post meds, etc...... 

It is 8:32 p.m. and she is sleeping.  She is going to wake up soon after her second platelet transfusion of the day.  She is going to get hungry about 10:30 pm and there will not be anyone to call to bring her anything.  The nurses will prepare some pre-packaged, astronaut mac and cheese, toast, yogurt or cereal. She will be fine. Wouldn't it be great if she could have a fresh salad or some salmon or a toasted ham and cheese sandwich, or some fresh fruit.   Oh well, she just had a Bone Marrow Transplant after relapsing after 5 years. She is just a kid.  Her mom is busy, she is so worried about the fate of her only child she is not going to do more than complain and then get on with life.  And it should be enough to know that someday there might be food here.  It isn't here today.  It won't be here tomorrow or next week or next month. 

We will be here tomorrow and the next day and next week and next month.......

Maybe Ellie Mae is not making platelets because there are not being fed????hummmm