Sometimes there has to be some distance between the event and the reflection to make some sense and have some perspective. When we are in the heat of the moment, we can only do so much and take in so much.
I thought I was pretty much on top of everything until I went to a survivorship conference. They are all sort of the same. Cancer World people. Inspirational speaker: I had cancer and I made it and I don't have any problems. (Denial is a great coping mechanism.)
When you enter cancer world it is all about survival. What percentage of kids with this kind of cancer "Survive". I totally understand the need to be so focused but the longer you are around, the more you realize that percentage is only a tip, the very very tippy top of the iceberg of information.
It is so so complicated and each kid is different. There are things they don't want to talk to us about or they mentions in passing. As we are going down the road, we find out about them. I can remember when I sat there and heard someone that had treated Mary-E explain that Spinal/Cranial radiation continued to damage their bodies for 3-5 years. That is a long time in a child age 12.
I could not believe I had missed that little fact but went back to this blog and sure enough, there it was. Clear as day. In my inane babbling about heavy doors shutting, eating and sleeping problems, I had missed an important fact. These life saving doses of radiation were taking away her brain and thyroid and God only knows what else. For 3 to 5 years.
But... do we not follow the protocol. The time tested method of trying to beat this thing. Probably we do what we can to help her live.
It is only later, in the aftermath and years later do we try to second guess ourselves.
Should I have done this.....?
Could things have been better if I had done this........?
What would have been the result if we had tried....?
I remember be terrified to know we were going to miss a round of some chemo. How do we make it up? Will it come back if we don't do more?
How do we know if it is really all gone?
We walk out of clinic for the last time. We note the last bit of Chemo. We celebrate the end of treatment, we go on a Make-a-Wish trip.
We close our minds to all the doubts that sit in the background. The stirrings of worry. The little bits of dreams that are unsettling. We do our best to ignore it. We want to believe that if we do all the right things and say all the right prayers and banish Spam and other processed foods from the diet, things will be okay.
Charles Hemenway, MD, PhD. clearly is not a tuned in pediatric oncologist. He has not seen his patients go through treatment, relapse, try again, relapse, try to find a last ditch drug and study and then watch long slow downward drain of the life that came into the world with so so much promise.
There is a 70% cure rate. There is a 30% death rate... The kids endure with grace and courage massive treatment and pain and suffering.
We fear we will be part of the 30% or the 60% or the 95% of children that die. We hear the odds, we play the odds but we all know we have no way to change the odds, no matter what we do or how hard we try.
http://www.healio.com/hematology-oncology/pediatric-oncology/news/online/%7B476b729a-d317-4f7c-8266-d9d76338dac9%7D/new-movie-portrays-teen-cancer-unrealistically-expert-says
No wants to think about the downside of all of this but it is real. It is there and happens.
So Pam S. a parent from Seattle Children's thought I was talking about another Rebbecca being treated at Seattle Children's. Seattle's Rebbecca is 18, had a transplant and then disappeared from the floor to the ICU. Kids disappear.
It is another example of a subtle problem we have while in Cancer World. The hospital won't admit there are ANY children at the hospital because that would violate HIPPA. We live on the floor and many at Ronald McDonald House, chat in the clinic, Facebook each other and have a myriad of ways we ferret out information about what is going on with "our kids".
I can remember coming out of Mary-E's room one night and there were a million people in the room next door. Doctors and Nurses and portable machines. There was huge amounts of frantic activity. The next time I was out of the room no one was around. The room was empty and it looked like a war zone. No nurses were around and it was just creepy.
Kids just disappear and no one wants to talk about it. How sad is that. Some one's child is critically ill or has died and we pretend nothing has happened. Trying to "protect" cancer parents from what they know is a possibility from the moment we ask about outcomes may need to be reconsidered.
The silence scares us more and it removes a very important support system from the family.
What do I say? This is the message I received yesterday: Hi this is margarita, im jut calling to notifiy you that unfortuaelty mario passed today at 3am in the morning. (Margarita is the mother of Luis and her lack of English made it difficult for us to speak but she texts like crazy.)
Damn it, Damn it, Damn it.... Mario was one of Mary-E's transplant buddies. He was a big guy, tall big, always a smile, talked with everyone, kidded with everyone. He was a great guy. Lived in Quincy. Has a great mom, Linda. Margarita, Linda and I lived together for two and half months. We talked, compared notes, spent hours and hours not talking because we were with our kids.
We learned a few weeks ago that Mario was in ICU bleeding from his lungs and on a respirator. It has been a few weeks. Last we heard he was off the respirator but we knew he was still in ICU. I never thought that "off the respirator" was not a good thing.
This is Mary-Elizabeth doing Circuits and not knowing. She now knows. When I told her I was going to the funeral, she was very firm: "I am not!!! This is why we don't talk with each other. We know not to get attached."
They worry about each other from afar. They want to connect but know in Cancer World your friends don't just go away, they die.
The moms are much more in touch with each other. We all hate that the hospital won't give us information about other kids because we know the Moms don't have the energy or ability to do so. We want to help each other and do something and we are often stymied.
We are always looking for information for lots of reasons.
Did we do something wrong?
Should we be worried about something else? What is working for them?
What is he eating?
What is she drinking?
What is different about his identical double cord blood transplant?
Is this our future?
After all of this will we end up in ICU?
Did it matter that.......?
We are always comparing notes and hoping that if it is good, our child is doing better. If it is bad, we try to figure out how are child is not in the same situation. We are like competitive moms on a play ground with our kids.
But in the end, we all fear this the most: The death of our child.
Nothing prepares us. We just feel so helpless. We want the happy cancer story. The one the news always is so willing to tell. We know the truth.
We come into this knowing that only 40% of these children make it through. Knowing and then realizing are two very different things.
"Teresa
has been given a cup of tea in the front hall of New Waterford General Hospital.
The head nursing sister was the first to come across her. If it had been that
nice young intern from away, the hysterical woman would have been given a shot
in the vein instead of a cup of tea. The head nurse, however, has noticed
whether they drink the tea or not, the mere act of reaching out to receive
something that must not be spilled seems to have a profoundly calming effect on
all but the downright insane." Fall on Your Knees by Ann-Marie Macdonald
A child will a very aggressive and very rare, 300 a year,lymphoma is dying. We saw her less than two weeks ago and she was going to have a bone marrow transplant and life was good. Now she is saying goodbye.
The news took my breath away. We were at Children's for our first "after SCCA" appointment. It had not gone as planned so I was a bit Grumpy. I saw Ruby's aunt and received the news.
My mind immediately went into overdrive and I was simply stymied. What do we do for the parents of dying children? Do leave them alone to grieve and spend the last few days with the most precious thing in their lives? Do we go visit? Do we give them gift cards? Do we do their laundry? Do we take them food? Do we do something? Do we do nothing?
I called my sister Belle. I asked. Her answer was "There is nothing you can do". Most people flee. Most don't know what to do or what to say. They simply flee. We know what to do after someone dies but as a culture we certainly lack the "before" part.
Okay that was helpful..... NOT. So I remembered a post I did a long time ago. I don't remember the book but I remember the quote. So here is what I am going to do.
Anne Holm brought us three kinds of cookie dough. We had not used it yet so last night Mary-E made all the cookies. I am going to put them in a basket with some good china cups, some tea and take it to Kate. The nurses have instant hot water and so when people come, they will be able to give people some tea.
Something to not spill as the tears do. A little something from a Mom who has been too close to the same situation, more than once.
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