Being inpatient at the hospital when your kid is being treated for cancer is so difficult. It is impossible to maintain your sanity and sense of humor for more than 6 days. Max.
First you have the worry of being there if it is not a regularly scheduled admission. You are there because you child has some unusual unknown bug. While you might be there for a fever, in Cancer World they are dedicated to finding out exactly what it is. They draw blood cultures and bunches of Petri dishes full of lemon jello sit around and stew until something grows.
Lots of times nothing grows and you are still stuck. If the fever is high enough they put the kids on a broad spectrum antibiotic, sort of like a Z-Pack. The shot gun approach. These kids are then stuck until they finish 14 days of the stuff because usually it is IV. You are already going to be there 8 days beyond sanity and it is just a bone they throw you and they don't mean to ever let you out.
Then a few days in (3ish) they figure out what you really have and a new type of antibiotic is chosen from the shelf. It has been pre-tested to see what works the best. Then you wait again, sometimes the days start over.
At that point you know for sure that you are there at least two weeks. But.... it might be longer depending on how low the ANC is at the time. If the counts are lower then 200 your are stuck like a bug on a windshield waiting some more.
So you wait. You wait for every blood draw. You wait for every temperature reading. You wait to see what comes from the kitchen. You wait to see if she chooses "the dress". You wait for rounds before a shower because they might have some news. you wait for the platlett YOu wait for the other closet of shoes to drop. YoU wait for the next does of meds. You wait for a pint of blood because the bone marrow is not working. You watch more Dark Shadows and fold more crane.
During the waiting you worry. Why is the bone marrow not working? What do we have to do to get out? What did we do wrong? How could this happen to our child? Did we make the wrong/right decision? Or my favorite: Remember that day you helped someone put Round-up on their yard and two weeks later you found out you were pregnant and now your child has leukemia?
When you know how long the admission is going to be 80 days for transplant or 4 for chemo, it is very doable. You go in, you know the drill, you know the goal. Because you are headed into a certain specific direction it is survivable This is what we have to do to go home.
It is when you have no idea, no control, no sense of when it is going to end. If there is a bug then you have to be in isolation (Not even able to use the on-floor bathrooms. I decided not to say "pee on the floor") Everything anyone brings you has to stay in the room. Everyone has to gown up. Your secret supply of real food has to be heated by a nurse. You cannot even go to the family room and fill your water pitcher. It is a fresh kind of hell. 250 square feet with a bed, a chair beeping things and lots of other crazy stuff.
The minute you hit the room after an eternity in the filthy and more then disgusting ER, you are fighting to get out.
The other part of this whole thing is they keep talking to us about Shangri La, Or the New hospital wing. Even though the Cancer kids raise millions in funding and their care pretty much carries the hospital budget, they are in horrible outdated rooms. They are awful. I don't think they have touched them since the 80's Mauve has gone there to die.
The bathrooms are closets, the fixtures are falling apart. Because they get to move into the new part of the hospital, they quit fixing things on the floor about a year ago. There is a room where 4 people stay that has not had hot water for more then a year. "too much to fix it" I was told by the plumber to just use Purell. Hello!!! anyone read all the information about how HAND WASHING is the only really way to go?
Oh, dear, see I still suffer from Long Stay in the Hospital PTSD. When I read about someone being there and slowly unraveling as they wait and pace and try to maintain their sanity, I start to go to that dark place.
Okay, enough. Just know until you have done one of those hard long stays, you will never ever understand. But thanks for trying......
Moms. They come in lots of different varieties and we have all had one or more in our lives. Women that share a special love for us. Women that tell us the secrets of life. Women that let us know when we have crossed a line or push us across. Moms come in lots of shapes and forms and sizes and ages. (More than once I have held a very honest 3 year old that has gently probed my soft stomach and said " Your soft and Squishy") I always hope they remember that warm lap.
The Moms I have been meeting are a very special kind. They are on a mission like no others I have ever met. They have had their worlds attached by words like Liiukkemia, Neuro Blastoma, Ewings Sarcoma, Aplastic Anemia and more. They each have a tale. A moment when it all changed. A moment when all they could see ahead of them was slumping presidents, exploding space shuttles, burning towers. A moment that changes the world in a way that only a mother could imagine. The moment when they realize their child could be the subject of the "We need to think about focusing on making your child comfortable" discussion.
The Moms don't think about that conversation. They think about the Road Map, the protocol, The New experimental drug. They find cavernous pools of positive energy and mine it like moles in the center of the earth. They keep bringing it to the surface and focusing it on accomplishing the next task. Can they find the right drink that will help with hydration? Can they find the perfect food to counteract the calcium loss? Do Dip & Dots really raise ANC? Can their child tolerate one more vital sign check before they simply loose it? Is a bath a possibility?
The focus is intense.
So is the resentment.
Why is Fortune Magazine doing a cover story on how Prostate Cancer is being cured? Would childhood cancer be cured if Lance Armstrong's child was stricken?
What about the little girl whose mother holds and rocks her while she vomits endlessly post chemo. The mother who had to hear that the reason her darling 2.5 year old girl started to stumble was that she had a brain tumor the size of grapefruit that needed to come out. The little girl with the port at the top of her bald skull. The port that takes the chemo directly into her brain. What about the quiet yet frantic walk of the young freckled woman endlessly pushing her 18 month old on the lilypad while she waits in the hospital, on the floor 10, 20 sometimes 30 days for the ANC to come back from 0?
What about the never ending frantic guilt and resentment that comes from knowing the kids want their moms to be there all the time and knowing that at some point in time, Mom's need to leave, if only for a shower and a cup of coffee.
What about the resentment that comes from being out of the hospital and realizing the world has gone on without you? No even notices how haggard and tired you look , or how very very sad you are.
The only ones that truly know are the other Moms that rock the children, get the ice, search the snackcart for an acceptable treat, call the nurses, make up the sleeping chairs and fitfully wonder if they will ever have to have "The Conversation".
While the Cancer Mom's are dealing with their world crumbling, there are the MOM's that are getting us through. They call and do laundry. They bring us coffee and listen to our endless ramblings. They tell us stories that make us laugh. They remind us that even if the world has gone on without us it is waiting for your eventual return.
I certainly could not do this without all the help from everyone. Thank you one and all.
