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. 

Tuesday, September 30, 2014

September a month of Contraditions

It is Pediatric Cancer Awareness month.  I have been aware of Pediatric Cancer for way too long but never really knew it was the month of awareness for until last year.  I am not sure when this all started but September has been significant for a bunch of reasons.

September 13, 2004:  Date of first remission.
September 28, 2011:  Date of Relapse
September 30, 2014:  Things seem to be fine.

So I am working on loving September since we are having good news for two out of three times. 

My questions for today are:  Now What?.

Its time, very much time for me to start generating money in a constant and steady manner.  More efforts in networking, redrafting my resume and then seeing what I need to do to convince someone I am exactly the right person for the job.

I will keep trying... Because if we have learned nothing about the past few Septembers... Trying is the only option.  Eventually you get good news. 

Wednesday, September 24, 2014

Lessons from Cancer Mom Parenting.

This was published in the Huffington Post.

I didn't write it but could have.  I am working on my list. 
I learned that kids can get cancer when Jackson was 1 year old. He'd just learned to walk. He still wore OshKosh B'gosh overalls and loved to be rocked to sleep. There was nothing that he did wrong, or was exposed to; one day, there was just a lump.
Chemo. Radiation. Surgery. Stem cell transplant. Immunotherapy. Intensive Care. Oncology. Even though it's been four and a half years since he finished treatment, some days it feels like it was yesterday.
At times, I think I was born the day Jackson was diagnosed. The world falls silent as cancer shuts out all the background noise of work stress, mortgages, that extra 10 pounds or what's on TV. It awakens a level of empathy to suffering and an awareness to what's truly important in life.
Once a cancer mom, always a cancer mom. These are 20 things I know by heart:
  1. It is the most unnatural thing in the world to be told your child has cancer.
  2. There's nothing you can do or say to take it away from them. There's no fixing it.
  3. Babies can be born with cancer.
  4. Toddlers can lie on the floor and throw a tantrum while having cancer.
  5. Little Leaguers will miss their games because of cancer.
  6. Teenagers can go straight from the hospital to high school graduation, then right back to the hospital.
  7. Children can often handle higher doses of chemo than adults.
  8. Kids can play hide-and-seek, chase each other in toy cars and build an epic Play-Doh creation, all while toting an IV pole with chemo.
  9. Treatment straight up sucks.
  10. I can feel a fever without even touching my child.
  11. There's such a thing as radioactive urine. And I've changed that diaper.
  12. Sleeping in a hospital bed with a sick child teaches you interesting life skills, like the ability to wake from a sound sleep, grab a bucket and catch vomit.
  13. Some kids can have the opposite reactions to medications... like for instance, something that makes an adult sleepy might amp a child up. Having a toddler stuck on "fast forward" will make you bone-weary.
  14. The first scar is always the worst. Taking that beautiful, soft baby skin and seeing it cut open is like ripping your heart out.
  15. You realize nothing is as important anymore as getting your child well.
  16. A mother's love knows no bounds. Not even being puked on, directly in the face.
  17. You'll never forget the smooth, sticky feeling of a bald head against your cheek.
  18. Every ache and pain, no matter how long your child's been in remission, will remind you that cancer can come back.
  19. Statistics don't mean a damn thing when it comes to your child.
  20. Kids never give up. And neither do their parents.

Sunday, September 21, 2014

Moving Forward and still Staying Connected.

She is off treatment, she is back at school, she is thriving. She even missed a class this week because she slept in... how normal is that?

So there is a part of me that wants to step out from under the Cancer World Cloud and move on. We are done, it is over there is no looking back. Wouldn't that be great. Wouldn't that be a perfect thing to do.  Any sane person would do so.  

But we Cancer Mom's are sort of like holocaust survivors. We might have not been in the camps (our kids were) but we carry the scars with us.  Our kids have the tattoos from radiation but we had to be there with them. We were there, we were trying to keep them alive and keep them sane and keep them safe. 

I want to flee and pretend it did  not happen.  I want to flee and pretend it won't return.  I want to think it is done.  But we all know it is never done.  No matter how far out, no matter what the research says... it is never over.   

Someone shared this little picture.  Sort of a reminder that it is never over. So I guess I have no choice but carry on. Work on a book. Do something great to fill the hole cancer dug in our lives.  We are strong and determined and nothing..... will keep us from doing everything we can with our lives.  Small steps.  Each more normal than the last. 

Friday, September 19, 2014


We keep marching forward but sometimes it is necessary to step back and spend a few moments in the past. 

I found this picture with some other's.  I don't know when it was put away but sometimes it is good to see take them out and look.  My daughter will laugh at the glasses. Jerry Tapia will be dismayed that he ever ever did my hair like this.  I am amazed that I knit three sweaters for Mary-Elizabeth and her cousins.  I am amazed I convinced a guy from Astoria to come to Cannon Beach and take the family pictures.  We are sort of once in 20 years sort of folks. 

I am still pounding away at becoming employed.  Mary-E and Tucker are off doing college things.  The world keeps moving forward no matter what we do but it is good to take a few moments and pause and think about the good things from our past. 

Boy what a difference 20 years can make.  WE both are still very very cute.