Friday, October 31, 2014

Fear and Loathing of Relapse

I have mentioned in the past the "R" words that live with those of us in Cancer World.  Remission.... our favorite.
Relapse or Re-Occurrence....... ones we fear and loathe. 

What we know is that sometimes remission does not happen.  In ALL ( Acute Lymphoblastic  Leukemia) world the kids are supposed to achieve remission after 7 days of treatment. Meb's was a bit more stubborn and but she was in remission by September 13, 2004.  A full course of treatment (high risk because of her age, her presentation and her failure to achieve remission in 7 days).  Life seemed to great.  Of course 7 years and two weeks after remission her cancer came back. Big time. 


Bam.... No real warning. No inkling that something was wrong. Nothing.  Kid looks great. She is in school, she is thriving,  she has this thing beat.  She is headed out into a new a wonderful universe.  Nothing will stop her.  

Wrong.  Oh we  were so wrong.  We had to do another circle of the moon and hope that by firing our reserve rockets we could make it back home.  We did. 

But the spaceship is pretty damaged. The occupants are weary and sometimes it is hard to face the world.  We know there is no guarantee things will stay in the correct trajectory. No way to know what tomorrow will bring. I'm not too sure when we will ever trust that there will many tomorrows.  

We do know that when it comes back, in any form, it does with the fury of the exploding sun.  We are reminded of this often. 

It is back for our dear little friend Allistiare. She had AML when Meb relapsed in 2011 and then she relapsed and then she did so again and then she had a very risky Bone Marrow transplant and now... Now something is back. Something is starting and they know how it will manifest itself. Just having it back, even in little bits they know it is bad.   They don't know if there are many options or where they are headed to figure this all out. 

I love these people, they are family in a special way.  Jai and I had many a cup of coffee during the long transplant months. Sten is great and stoic and a wonderful father.  He always smiles and stays in the moment with a calm I don't know how to master.

It has taken me almost a week to write about this most awful of relapses.  I thought if I didn't say something it would go away.  It would be a bad X-ray tech in Bozemen. It was just a mistake.  It can't happen to such a sweet child. 

As I have wrestled with all of this, cancer and cancer families and families being told to go home to hospice and children dying and this heavy cloud that closes in on me, I have come to a realization.   If there was a good thing to do to make it all better I would have figured it out.  If there was a bit of magic or some secret or special charm, in 10 years, I would have figured it out.  

There are no right words. No right actions. No right answers.  (Now granted there are lots of wrong ones but that is for another day.)  So the only thing I can do is listen. Ponder. Respond. React in a thoughtful way. Have lots of chocolate and Starbucks on hand.  

I can do that. 

Jai, Allistiare's mom is an amazing writer.  Here is the link to her blog.  I would suggest a glass of wine in-hand before you start.

Sunday, October 19, 2014

Practical Suggestions for Cancer World Families

So we all know that this blog has been about Surviving Childhood Cancer.  I have belly ached and whined and cried and cheered when appropriate.  

I am a member of a group called Momcology and there the Cancer Mom's of the world kibitz and the smiles are less prominent because we don't have to make everyone okay with the fact our children are so so sick and often die.  The group grows every day and every day there is a bit of hope, a lot of despair and hopelessness. It is a real representation of Childhood Cancer.    Moms that are just starting, Mom's ending, Mom's with kids that have relapsed and died.  It is not a happy happy place but It made me wonder why ti seems such a good place to hang out. 

Many supportive friends have helped us all through this difficult process. We have been the beneficiaries of much giving, both time and money and practical actions. Much prayer, encouragement and cheerful wishes.

 I was reading something about a woman in an emergency room and another patient looked at her and said:  "Everything happens for a reason."  The writer wanted to yank the woman's hair out.  I am a bit more forgiving. As Cancer Mom's we don't even know how to respond to the words that swirl around us.  Things like Chemo Therapy, Radiation, 40% chance of survival are common words in our vocabulary.  We no longer live in mainstream universe. We are off somewhere in a place that looks like our world but with a heavy dose of Twilight Zone set dressing.  

So here are some ideas the next time someone posts their kid is having a rough time or you hear about a family that is going to be dealing with long term health issues, don't just respond with "I am praying for you."  While that is nice an all, send them a gift card, no amount is too small.  Go the the blood bank and donate blood.  If you live in the same town, go and promise to take out their garbage every week. Rake their leaves. Organize a meal train for the family not in the hospital. Make the child or parent a really soft pillow case from all that fabric you have in the basement.  Connect.  The kids love I-Tunes, Target, Victoria Secret gift cards. Cash in your miles so a family member can travel. 

Trust me it does not take much. As the blogger pointed out today:

  if you want to help someone in distress, buy her a cup of coffee or a cocktail. Tell her you have experience something similar and you feel much better now. Tell her you understand how she feels, how unfair her circumstance is and how much it can hurt when fortune frowns on you. Smile. Tell her you are sorry she had some bad luck.

Monday, October 13, 2014

Nothing Prepares us for the Death of a Child.

I remember when I was first pregnant with Mary-Elizabeth I was convinced I would never ever be ready to give birth.  I later looked back and realized all the sleepless nights, the getting up at at the oddest times to use the bathroom, all the discomfort that robbed me from sleep was preparation for after the birth. The birth for which I could not wait.... 

Life prepares you for what is coming your way. Little by little.  We roll over, we sit, we crawl, we pull ourselves up, we walk, we run... Much of what happens in the way of preparation happens in a simple way.  It sort of sneaks up and and at some point you are readied for the next task.  Unfortunately, sometimes the preparation is not for good things. 

I was visiting with a Cancer World Mom the other day and she related how she felt the early challenges with her child had prepared her for the Leukemia Battle.  I am a great believer in this idea and concept. It's the old "what doesn't kill you, makes you stronger" concept.  I have had way too much practice and experience, not in a good thing by the way.... 

Cancer Parents are reminded and buffeted every day with loss and the child death.  Every time a child dies, or one is dying or may die, the pit in the stomach is made wider and deeper.  As parents there is no adequate way for us to prepare for what is coming.  We all loose a gold fish, a bird, a cat or a dog.  We then loose our grandparents and extended family members and parents.  It sort of gets us ready for the next steps in the journey.  It paves the way, it gives some practice at handling the pain and emptiness that follows the death. 

 I so distinctly remember being unable to breath when my dad died.  As much as he is missed, it was okay that he was gone.  He had a great life. He did the things he cared about, he helped people, he ate BBQ in Magnolia, Arkansas, he read good books, he spent time with people he loved and in places he loved.  His lose was gigantic at first and then time seemed to make it okay.  At unexpected moments a memory will pop back or an item will present itself and it begins again.  The horrible feeling of emptiness piles up again.  It has been almost 20 years since my Grandmother died and I still think about sending her something or calling her.  

All of these parent and elder loses is the universe preparing us for the endings that are coming.  Giving us some prospective on the end of this life and how to best make the transitions.  Helping clean out a family home teaches us about the need to pare down and to focus on what little we need for the future.  The slow decline of a parent or a family member lets us practice and prepare for our trip down that particular rabbit hole and for their death.  

We are still always shocked and horrified and breathless when they die.  If it is sudden or if it is long and lingering.  We are still in a "state".  It should be a shock and heart break.  Those we lose are so important to us.  The greater the feeling of emptiness, the deeper the love we were able to share when they were with us in physical form.  It is a part of life, the ebbing and flowing of tides. 

So.... when a child dies before a parent we are stuck.  We don't know how to move on... even months and years afterwards, the wound is fresh and open and throbbing.  The reason being there is no way on this green earth for us to have any way to prepare. Death of a child is not supposed to happen. They are our little bit of immortality, the continuation of our story, they hold the future.  The pattern of understanding is simply dismantled in a blink of an eye.  It is over.  

I still have my child, she is away at school but we have looked long and hard at the brink and often slipped dreadfully close.  We have watched other's headed down that sad and solitaire path.  No one can join, relieve, help, or comfort those on the road to child loss.  They are on the mountain alone.  

From a comfortable distance, it is easy to say "why don't they stop treatment?"  "Why don't they go home?" "Don't they know it's over?"  I have to be honest, I have thought this at some point.  I guess it comes from seeing the suffering of everyone.  But then how do we ever be alright about stopping the treatment of our children? A cure, a reprieve, a new study, a new medicine. A new......   It is so so hard. 

Nothing ever gets us ready.  We have too much experience and know what our kids are missing during treatment and what they will be missing in the future.  We have to trim back our expectations and the dreams of their lives.  

When that lovely little squiggly life is put into our arms we just don't have it in us to think "Our child might die a horrible long agonizing death from childhood cancer."  It is not on the radar. At the beginning of life, we don't often think about death. 

I wish it was not on any one's radar.  It seem lately more and more parents are facing this horrible end to their child's life.  Keep them in your hearts. While we can't prepare, we can be supportive and helpful and if nothing else, sit and have a cup of coffee with them and let them tell you a good memory.

Tuesday, October 07, 2014

Giving Back...... Can we really accomplish our goals?

So we have moved into Breast Cancer Awareness month.  Lots of people are really freaked out by the apparent lack of interest in Childhood Cancer.  The month has turned pink.  Let's be honest, I was not aware that September was a month for such things until a year ago.

So I am a bit dense and was not aware that it was a fund raising month.  I guess awareness requires money.  It is such a conundrum.  I know it is important and very necessary.  I know that we need to figure things out. I also know that the Mom's whose kids have been affected by the horrible disease want to fix it for others. We all want to "give back" to those that helped and made our lives livable during the ordeal. 

Mom taught us this lesson. The reality is that we can't "Give Back".  It is not a possibility to do so in any meaningful way.  The family that dropped off the meal doesn't expect to have a meal returned.  It is not reasonable to think we can. I know when I do something for someone, I don't enter it into the ledger and expect something in return.  It is a gift for now.  

We have to pay it forward.  I realized I need to stop trying to re-pay everyone and just move the good things I could do forward. 

I remember the moment Mom practiced what she preached.  We were at the California State Wrestling Meet in San Jose California.  David was competing and we had gathered for the event.  Mom and Dad had come from Canada, I was there from Dietrich Idaho. David was a Senior.  We had been at the ticket booth and there was a women with a small child.  It was very apparent she had paid for entry with 100% of her cash, the only form of payment they took.  She had planned on using her credit card.  We met again in the bathroom and Mom asked her if she needed some money.  She explained her brother-in-law was a light weight and she has indeed used all her cash.  

Mom gave her 50.00 and the recipient wrote her a check for $50.00.  Mom tore up the check and put the part with the name and address in her billfold.  She then explained: "When I get home, I am going to write her a letter.  I am going to explain that when your father was in medical school people sent us money, money we desperately needed.  We tried to pay it back and were told by more then one person it was more important to help someone in the future.  In every life, the opportunity will arise for such a gesture.  Her job was to  pass it on."  

She never said another thing about it and we went in to the Arena to watch David become California State Champion.