The Downside of Too Much Information in Cancer World

As everyone can agree.  I am on the computer and writing way too much.  I embraced this blog as a way to put the information about ME out there in 2004.  It all started before diagnosis.  I became very aware that she could listen to me talking on the phone.  I could not stand to tell the story time and time again.   

Remember when we talked on the phone?  

Well in the past ten years many bloggers have joined me.  Lots of parents and patients added their stories to the web.  Then came Caring Bridge.  A blog site dedicated to patients and their families.  Then Facebook exploded and support groups showed up.  

In my case the group is Momcology.  Secret handshake, passwords, have to prove you are one of us, initiation and vocabulary test before you can join.  You know the sort of site.  (Never pass up a chance to support this effort.)

With every good thing, there is a downside.  This explosion of sites and access and ways to interact has intensified the knowledge of how bad Childhood Cancer really is a lot of the time.  We know on some level it the worst of all worlds but HIIPA has made it harder to find out what happened to someone you spent weeks with in the hospital.  If you were in such a state you failed to get a good contact number, people just disappear.  It leaves you in a place where you let yourself believe they survived. 

It is no longer possible to be that naive.  More and more the relapses, life ending infections and complications, the impending deaths of precious lives is part of every day. Parents  put their desperate pleas to the universe in a post along with a small picture of their most valued and irreplaceable child. 

Another pin prick, more blood drips, more sadness pools at  our feet.  I am not suggesting they should not share.  I know the need to say the words and let the power of those fears dissipate if only for a bit.  A chance to reach out and find others in the same dense fog. This is a dark, dank lonely and sad place.  Cancer World is a place of despair and frustration and fear. We are here and we are here together,  our group, our tribe, our fellow travelers. We understand what they are feeling.  We know the steps they take. We know that bottomless fear and despair of lack of solutions.  We know we are dumping poison and radiating our children to as close death as possible in hope of bringing them back.  Hoping they can get back to "NORMAL".  

Some parents are sad, some are angry, some curse God, some plan the destruction of the National Institute of Health. Some raise money by shaving off their hair, some walk, some run, some have auctions and events.  You absolutly have to do something. This kind of fear and despair has to vent out of the pressure cooker that is Childhood Cancer.  I took on Chef Walter at Seattle Children's Hospital for failing to have anything to feed my daughter during her long stay.  (Check out 
www.facebook.com/BetterFoodPleaseAtSeattleChildrensHospital)  

This week I have learned of three relapses and four deaths.  I have read the agony and cries of mothers who are living with the loss of their children as time keeps marching forgetting them. I have learned of families being sent home because there is nothing left to do.  I have discovered, with more frequency, the term "Comfort Chemo". 

So... Where does all this leave me.  I can't fix it. I couldn't even shame Seattle Children's into serving something more than unwashed iceberg lettuce, frozen toasted cheese sandwiches and hot dogs.  

(Photo Stolen from Liz Selleck)

But I guess I can take a lesson from our children.

Don't stop. 
Don't give up. 

 Even when they say there is nothing left to do but Comfort Chemo.  

Whats all the Fuss about Childhood Cancer

September is Childhood Cancer Awareness month.  Sort of like October is Breast Cancer.

I guess it is hard to believe there are people that are not "aware" of Childhood Cancer but given the small amount of funds (4%) go directly to Childhood Cancer research it is easy to understand.  It is such a small percentage of the cancer population the drug companies have not developed any new drugs for a long time.  That being said, I am still baffled at the lack of knowledge about what happens to kids during and after treatment.  

People often want to know if Mary-Elizabeth has been cured. I never know what to say about it. The medical people love to talk about 5 years, or 10 years of being cancer free.  We have small and young children. For example, if Robin Ulness makes it 5 years post cancer, she will be 7 or 8 years old.

 Mary-Elizabeth will be 24 years old.  Does not seem like much time.  She will maybe be just out of college.   

Just imagine if you only were able to allow yourself to look 5 years ahead.  No more, that would be all the time you have.  5 years.  Your child does not get to be any older then today plus 60 months.  The length of time it takes for most Americans to pay off a car.  1/6th of a house loan.  

I guess what I want is people to pay attention and maybe focus a bit on what is happening behind the smiles and the "sure we are great" that parents and Cancer Kids often have.   Because it is hard.  Even if you kid is "fine" and getting better each day.  Many are not.  Many are still trying to find away out of the grief and the pain of loss.  A family had to have the "talk" with younger brothers and sisters.  The your brother is dying talk. 

Don't take me wrong, I am so so grateful for what is available, for new and improved treatments, for less invasive treatments.  I understand how complicated this all is. But....

Just take a moment.  Look at the full moon and ask the universe to leave these kids alone.  Let them live out their lives. Let them fall in love. Learn to ride a bicycle.  Learn how to make a soccer goal. Learn how to drive a car. Learn how to get themselves out of jail without Mom and Dad finding out.

Okay, I'm done.  Maybe next year Seattle Children's Hospital will acknowledge the month since they do such good work in helping out kids. Maybe the White House will light up like they do for Breast Cancer. Maybe Century Link and the Ferris Wheel will do the same. Maybe the Empire State Building will light up for something more than the US Open.  Maybe we will do enough education so people will begin to understand the high cost of this disease.  

Mother Earth has lit up in Hawaii.  She is going gold. 

Currant Lessons....

5 or 6 pound of these:

juiced makes about 5 cups liquid.

Then you add equal part of sugar.  

Boil for about 20 minutes and you get 

Each of these jars hold about a cup. 

So the process produced about 6 cups of jelly.  

The French are very into Currant Jelly and have a special preserve.  

As of 2012 the House of Dutriez in the town of Bar-le-Duc provides one of the very few hand-made preparations still on the market, la confiture de Groseilles de Bar le Duc (Currant Preserve). The traditionally hand-made product involves épépineurs or épépineuses (seed extractors) de-seeding the currants with goose quills to flick out the tiny seeds without disturbing the flesh of the small fruit. Sometimes sweetened jellies, consisting of mashed and sieved currants of a significantly lower cost and quality, appear on the market under the same name.


Mine was made by steaming the currants, letting the juice gather in the reservoir.  Sugar added and boiling in a French Jelly Pan stirred with Ms. Ferguson's Mother's Jam spoon. 

 Not a single goose quill was used to de-seed the berries.  I clearly disturbed the skins.  My berries were mashed and abused and oh my. 

Life is all about compromise. Nothing is perfect. Sometimes it has to be okay to have  a mashed and sieved life.

So Currently I am trying to learn from my Currants and simply carry on. 

News is trickling out, slowly..... Not much to say but fever is much better.

Lulu has had no changes and no movement...ventilator settings changing a lot blood pressure has been jumping all day but fever has been at 99....come on lulu keep fighting..



More waiting. 

This must be a very noisy place.