Fun Times

Having spent the last post bemoaning the surprise struggle the first year off treatment throws at a family, I felt it fitting to also show how much fun it can be.  We have been busy living, as well as working out kinks, so here I would like to offer a glimpse into the good times:

ONE YEAR CLEAR!

Today marks the one year anniversary of Sammy officially being considered off treatment and done!  It was quite a low key day compared to the end of treatment celebration, but I think it should have been.  We are moving on and growing in strength, wisdom, and understanding.  We are entering a new phase and anxiously excited to be doing it.

Sammy went to the clinic with Brian and weathered the shots he needed.  There are not many more shots left until he is bionic....well, immunized again at least!  Sammy will not be going to the clinic once a month now.  He has graduated to once every three months.

Knowing me, I am going to have my mad moments where I NEED to contact Dr. C and check in about something! Going from weekly to monthly blood draws had given me funny turns occasionally.  I know I will have a day of utter conviction that the cancer might be returning and panic beyond control because Sam won't be going to the clinic for weeks.  That's just me...I'm gonna do it...I know I am....I just have to work on managing it :)

Back to the good news.  (You have noticed, I am sure, that I just ranted on about my future panics which means I am panicking already....darn self-analysis!)  Anyway, Sammy is excited to be invited to a CHAM party in November to celebrate the children who are DONE!  We are celebrating quietly (apart from Facebook and Twitter spreading the word) by having a family dinner at Sam's favorite restaurant over the weekend.  We are happily making less of a deal.

So, what might I wish I had known about the first year off treatment?  Oh my!  There is so much!

• Families hold together during treatment but fall apart once it is done!  -  We have fought tooth and nail to remain a unit.  It has been incredibly hard.  Communication is key; acknowledging the problems and spending time working them out.  We are coming out of that fog now, but it was a close call at times.  Statistically, cancer does not increase the risk of families splitting up, but the aftermath sure isn't fun!
• Parents and siblings also suffer from PSPD - I was a MESS for a few months after Sammy was done with treatment.  I fell apart and became lethargic and disengaged from the world in general.  I knew why, but I still couldn't do much about it.  I did visit counsellors and even tried meds...not a good option for me as they actually sent me more squiffy!   I took myself off them and decided to work on picking myself up in other ways.    I'm fine now, but it was hard.  Thankfully I am blessed with an amazing husband, a brilliant mom and in-laws and fabulous friends who took care of me and cut me some slack for being less than I should have been.  
• It is hard to let cancer go - you would think I'd be glad to see the back of it and just run away from anything that reminded me of those years.  No!  I turned into an obsessed freak!  I had to do WHATEVER I could to beat cancer and find a cure.  I blogged, Facebooked, and Tweeted all the reasons why everyone should be fighting with me.  It was a battle I had to face, my son will be affected forever...and we don't yet know to what extent...so I just kept on going with the cancer thing.  
• Sometimes, despite having every reason to savor every precious moment of life, you don't!  -  Sitting in the hospital during the very first weeks of treatment back in 2009, I couldn't even read a magazine as it seamed so trivial and, well, useless.  I hated how so many things were taken for granted and misused or neglected.  I noticed all the disparities in the world and resented those who didn't appreciate what they had.  I don't do that so much anymore!  I don't always appreciate what I have.  I am even guilty of brushing Sammy off so I can relax and enjoy some time on the computer or doing 'my own thing'.  I have started taking some things for granted again! 
• I DO still stare at my child while he is sleeping a weep silently as I think about all he has gone through.  I then do the same with his brother who, as a sibling, had his world changed forever without the 'fame' and support.  I cry for my children a lot.  Sometimes it is with relief ... sometimes regret that things had not been better.  
• Eventually the crap gets better!  This one is important.  We are not the same family we were back in 2009.  Not by any means.  We have our skeletons and we all probably should see a good shrink...but we are okay.  We are stronger now.  We are ready to look forward and honor the past but not dwell in it.  

ONE YEAR CLEAR means so many things.  We are hoping to be a family that gets to 'five years clear'.  That is the goal.  After that...well, we will enjoy that when it happens.  

Pearl Jam - The Sammy Bracelet!

Pearl Jam is my escape from everything to do with cancer.  But at the most recent show, over in Missoula, Montana, I mixed up the two worlds a little and came out with the experience of a lifetime for this fan!  I am a big Mike McCready fan...he's the lead guitarist.  I was at the show with very good friends and had tickets for a "meet and greet" before the show started thanks to said friends working some magic.  The show was in the home state of another Pearl Jam member, Jeff Ament., and was in support of Senator John Tester.  So it had political leanings and I wanted to do a final last hurrah for Childhood Cancer Awareness Month. 

I wore my Superman Sammy shirt and bracelet because I wanted to talk to Tester about healthcare and share with him about Sammy having leukemia and thanking him (and reminding him to keep going) with the healthcare stuff).  Anyway, I'm next to Mike but behind him and he turns around and looks straight at my shirt and goes to shake my hand. My bracelet was too big and had fallen over part of my hand so he got it in his and looked at it...I quickly explained what it was and he gave me the BIGGEST hug and then took the bracelet to wear....this made an incredible night the most special moment for me. My Sammy's bright orange band on Mike's wrist at one of the best shows I've ever seen! I can't put it into words properly.   :)

Pediatric Cancer - Some Hard Truths

Well, I was going to post about the wonderful summer we've been having.  I have lots of amazing photos of Nana's visit, Sammy at camp, Jack being a baseball hero, and Brian having a blast at his birthday party.  Instead I am going to write about cancer....well, go figure, I thought I was done with that!  

Pediatric cancer kills an average of seven children a day in the US alone.  This weekend, at least 14 children died.  One of these children was called Cody.  He was a beautiful little boy who fought long and hard, but cancer won tonight as he slipped away.  Read about Cody here.

G is a friends of Sammy's who I have mentioned on numerous occasions.  He is now awaiting a bone marrow transplant which was postponed because it is becoming increasingly more difficult to ensure he is in remission after relapsing at the beginning of the year.  He is a fighter.  He turned eight yesterday.  He faces the battle for the second time and will have an unimaginable few months post-transplant IF he can get to that stage.

Then Sammy is another child who faced the beast.  He won.  So far.  Yet, as often happens, he now faces depression and sleepless nights as he fights the demons only a survivor has to face.  At eight years old, he is coming to terms with his own mortality, he questions why 'he' had to get cancer and waste over two years of his life?  He asks how cancer starts and why it happened to him?  Did something go wrong?  Did he do something wrong?  It has taken hours to get Sammy to go to bed..and I am not sure he is done yet.  He cannot rest and is melancholy even when fun is happening.  Inside his bright mind are thousands of memories eating away at him.  Right now he is reliving it all and we cannot chase the boogie man away.  

Let's face it...cancer cannot really be cured.  That is why Cody's parents grieve for him, G is fighting for his life, and Sammy gets blood drawn every month.  How does a child 'get over' that?  Why are 46 children diagnosed with cancer each day in the US and yet so little is done to find a cure?  

Be honest, did you know that a gold ribbon stood for?  Pediatric cancer.  Do you see them on the gear of football players like you see the pink ribbons?  No.  Childhood cancer is killing our children, tearing apart families, leaving eight year olds with Post Traumatic Stress Disorder, and most people do nothing.  Not because they are mean, but because they do not know.  

I have written about this many times before.  I have asked for donations (and will again).  But today I ask you one thing only.....if you have Face Book, Twitter, or any other social networks, or if you meet a friend and say hello....PLEASE tell them about childhood cancer.  Let them know the statistics 46/7 and spread the word.  

The happy moments will be shared...they are wonderful.  But tonight I grieve for a little boy I did not know except through FB.  But there are many more grieving families out there tonight.  This post is in memory of a beautiful young boy, in honor of G and Sammy, and the thousands of children fighting for their lives tonight.  xxx

Happy July Fourth!

Today is a day to celebrate for many reasons.  Naturally, the fact the Colonies decided to declare independence from us Brits and go on to win the Revolutionary War is one reason...and I do celebrate :)

Another reason is that Sammy is up and running, joining in the fun and play, doing all the things kids without cancer do on this special holiday.

I am thankful, and send much love to those who are still fighting.  May everyone have reason to celebrate on this sunny July 4th!  xxx

The Health Bill

In 2014 Sammy will be 10.  He won't be thinking about health insurance, and hopefully, we won't be worrying about his future health!  I am not going to get political, but one good thing that has come from the last four years has been the fact that my son, who through no fault of his own got cancer,  will now be able to get insurance despite having such a pesky ol' pre-existing condition.

Had this bill not been passed, Sammy, like millions of other children with pre-existing conditions, including his brother who has asthma, would have paid through the nose, or been completely denied health coverage!  Imagine telling a survivor to cover their own ass because they had cancer as a child!!!!

I am ecstatic about this.  I could argue against other decisions made by the administration...but I could with any administration, that's life.  As I said, I'm not getting political, I just want to celebrate this milestone and acknowledge all the beautiful children it will help in the future.

Childhood Cancer Awareness

Well, I know some of you are going to think I'm ungrateful and should stop whining with this post...just be grateful for what I have, and shut up!  But I can't.  I really can't.  Right now, as I type, Sammy is putting together his Millennium Falcon Lego set all by himself and looks adorable with his shaggy long blonde hair and unfairly long eyelashes.  At school the other day, he swung from the monkey bars, showing off his latest accomplishment, hanging upside down and then pulling his own body weight up with his new-found upper body strength.  It is like cancer never happened...except it did...and Sammy is a normal boy again.

But...and this is where you may want to tell me to shut up moaning...if I hear one more person tell me I can put cancer behind me, move on, and try to forget about it all, I may just punch them!  A little harsh I know, but here is why I can never forget or put it all behind me:

Yesterday was my anniversary.  I did not spend it with my family, but at CHAM 9. Yes, many of you will remember that is the floor the cancer children go to for treatment and for neutropenia/infections/complications etc.  It is not the day clinic.  It is the floor Sammy spent most of his first year on, mainly because his body was so ravaged by the chemo, he was constantly neutropenic.

I was not at CHAM 9 with Sammy,  He doesn't even know I was there because I was visiting G, Sammy's cancer buddy.  The little boy who had the same leukemia as Sam and had the same treatment.  He was our guide as he started treatment a couple of months before.  He got better and showed us how great being done is.  Now he sits in CHAM waiting for his counts (ANC) to get above zero.  He is neutropenic from the chemo of his new protocol. He has relapsed and needs a bone marrow transplant.  He has leukemia again.

As I stepped out of G's room to give his some privacy for a moment, I noticed the mom of a very special 4 year old standing by the nurses station.  S has a brain tumor.  She has had surgery and probably needs another as only 2/3 of her tumor could be removed.  She has a scar on her bald head from ear to ear.  She is doing well but her cancer is very rare so everything is unknown.  There are no statistics to comfort her parents.  Not that anyone can go by that as G shows.

I know S and her family through the wonderful families at school.  It was her mom's cousin who helped organize all the SuperSammy t.shirts for his fundraiser.  Now she has made up the same shirt, in a different color, for S.

We try to make cancer go away for Jack and Sam.  I know it will be with them forever because it was such a traumatic time in their lives.  However, they deserve to put it behind them and live happily ever after.

As adults, we can do the same.  But how can we ignore G and S?  How can the faces of those who lost their battle ever leave our memories....and why should they?  We honor them by fighting to end cancer.  We honor Sammy by fighting to end cancer, even if he never experiences it again.  We cannot turn away.  We know too much.

Awareness is key.  The more people who know about childhood cancer (any kind; I am way beyond just leukemia now), the better.  Not because they might donate money to a cancer charity which conducts research (although it helps) but because they might tell a few people and raise awareness too.

I am not asking for anyone to live with daily thoughts about children with cancer.  I am hoping more people come to understand how 49 children are diagnosed each day in this country, and 7 will die.  Then, maybe they won't tell me I can forget about it all and move on.  Maybe they will ask how they can help children with cancer because they realize I may well know what they can do!

Here is Sammy's Team page for his Walk for the Cure.  If you would like to join his team, make a small donation, or pass it on to friends, you will be helping to make the difference and save lives.

Team SuperSammy