Five Years Ago Today....

First day of Kindergarten

Five years ago today, my world changed.  My son, a kindergartner of only two days, was rushed to CHAM to begin treatment for High Risk Leukemia.  But we had woken up that morning thinking the world was a safe and lovely place.  School had just started and we were all excited.  Sammy was finally part of it all, a big kid at elementary school...he had so much to learn and so many friends to meet.  Except he didn't....

The rest is history.  The blog details the horrors of the first night, the feeling of despair, the heartache and constant readmissions.

Five years...so long ago....exactly half Sammy's lifetime ago.

Today I allow myself to remember...I don't need to re-read the blog...it is all still an open wound if I let it be.  Only today...only today will I allow myself to dwell on the past.  Tomorrow I will get back to living in the present and fighting to kick cancer's ass with awareness and fundraising.  I don't do it for Sammy...I do it for those who are fighting and are about to fight.

Here is a brief look back at then...and a few pictures celebrating how far my hero has come!

Just after initial admittance - there was still some hair under that hat!

Neutropenia meant keeping Sammy germ free! 

Sammy in school...he made it into Kindergarten for about 6 weeks out of the whole year. 

Spiderman's Hero

Superman Sammy at the LTN Walk

Graduation from elementary school

Goofing around with moi!  

Doing what kids do...

"I just want to be a NORMAL kid" - Sammy 2014

The Mom of a Survivor....

Happy New Year!  It is 2014 and I had the joy of ringing in the new year with both my lovely sons.  This year I had a new depth of appreciation for this moment.  I was a mother kissing her survivor and looking forward to a new year ahead of us.  I was also grieving for another child who had passed away a couple of weeks before.  Not my own child, but the child who had been one step ahead of Sammy all through treatment...who and hair back before Sammy, who showed us how to cope with some of the nasties the treatment offered, and who celebrated being off treatment before Sammy and gave us hope that we would reach that milestone too.  He relapsed twice and finally found peace a week before Christmas.


Cancer SUCKS!!!!  It steals babies from their parents' arms after putting them through the hell of chemo and radiation, transplant and therapy.  Years are spent fighting this monster, and then it wins...sometimes...often...way too often.  Yes, I am emotional because the little boy, the nine year old, the one who always had a smile and a funny joke, is now in heaven and not with his mom.  I am emotional because every day I hear about someone being newly diagnosed, passing away, or suffering pain, the likes of which none should experience.  I am in the 'circle', as it were.  I am 'a member of the club'.  I know about these things all the time.

I have known about these things for years...ever since my son became one of the 36 diagnosed on September 13, 2009.  There were 36 more the next day, and 36 more the following day.  Each of those day we also lost 7 children to the monster.  I knew all of this.  I fought for my son and fought for some kind of sanity within the family.  We moved on a little...enough to pretend we are a normal family again.

But now I search for support to raise awareness of the evil that is childhood cancer and the need for funding and government support in research and development.  There is a petition right now asking the government to light up the White House gold this September.  The purpose is to create as much awareness for our children as has been raised for breast cancer.  I am not taking anything away from the need to highlight breast cancer as a worthy fight...it certainly is, but the fact the government turned down last years petition (it had over twice the vote supporting it than were needed) because they...well they didn't actually give a reason....

At the moment only 4% of government funding goes to ALL childhood cancers.  Yet cancer is the number one (disease) killer of children in this country.  The treatments most children receive are designed for adults...the chemo and radiation burn and cripple the children.  Yes, they remain alive...sometimes, but they face the rest of their lives looking out for 'Late Effects' which generally consist of organ failure, heart attacks, decreased IQ's, and secondary cancers.  Only 4% of childhood cancer survivors will escape these late effects!

So lighting the White House gold will increase awareness, increase government support and maybe increase funding to help meet the ever increasing demand for CHILDHOOD treatment to childhood cancers.  If you feel you can vote, please click on the link to do so.  It is free and only takes a minute:

https://petitions.whitehouse.gov/petition/display-gold-ribbon-and-or-light-white-house-gold-september-childhood-cancer-awareness-month/qDwkVwSG

Now this is where I am overly emotional right now.  I have asked people through Facebook, Twitter and forums of clubs I belong to to sign.  I have had many 'likes' but hardly anyone sign the petition, including my own family and close friends.  Why?  They know what Sammy went through....oh yes, he is fine now...and that is what bothers me the most.  I know what is happening in the childhood cancer world....but, unless I get graphic and basically scare the shit out of everyone, they don't get it.  They see success.  I cannot ever imagine it being any other way...please understand that...but so much is needed to be done to help save children's lives, and my own loved ones don't get it.  I am in the very lucky position of being able to fight for others with the happy knowledge that my son is doing okay right now.  I have no idea what his future holds, but I can appreciate NOW.  What I can't do is move on completely...I know too much.

Please fight for the children and sign the petition.

Memory Lapse

Sammy Performing his Science Experiment

I come to this blog far too infrequently now.  Maybe it is because I don't need the therapy it offered during treatment.  I do know, however, that many people will be looking for information about life after treatment...so I need to update a little.

Sammy hardly shows any signs of having cancer.  No one at his school even knows about it apart from the teacher and nurse.  He would like to keep it that way and we are honoring that request.

Sammy went sledding for the first time EVER this winter.  Finally free of his port, and osteopenia a thing of the past, he was delighted that the weather gave us a ridiculous amount of the white powdered stuff.  I watched with great pleasure as he zoomed down hills, bouncing on bumps and flying past trees, all while smiling from ear to ear.  I was surprised by how little I allowed myself to worry about this.  You might think that, having almost lost my son, I would be crazily over-protective.  It has had almost the opposite effect on me...I say, live life HARD!  Enjoy all that you can...why not?

I watched my little guy swim with such power, each stroke a tribute to how he has managed to get his muscles working again, a sense of pride and determination as he sped through the water.  I no longer rush to explain to the instructor that Sammy can't lift his arms above his head, or that he needs extra time between lengths.  In fact, if truth be told, I am the proud mama watching her son swim at the top of his class...mastering the strokes easily, swimming harder and faster than anyone else.  Oh...I am gonna shout that one from the rooftops :)

Academics are another area of immense pride.  Sammy is at or above grade level and demonstrates an amazing ability to retain information. He was the proud recipient of an A+ for his Science Fair project.  He loves to read, has mathematical understanding, and can articulate his thoughts incredibly well.  In addition, he has a rare drive to really achieve in school.  He is responsible and often reminds me to sign things.  I'm not sure where he got that last one from.

Imagine my surprise, as we were sitting together today,  Sammy showed that he really didn't remember something.  I had asked him about the pain he felt with his neuropathy.  He had gone through most of the treatment years on Neurontin for the excruciating pain in his feet.  But Sammy floored me when he casually shrugged and said he didn't remember any pain like that.  My jaw dropped.  I thought he would never forget it.  He cried so much with it.  I cried so much with it.  Yet, it may as well never have happened.  Thankfully, Sammy has moved on and left some things well behind.

Today we are off to enjoy the sunny skies of Florida.  We have not been on vacation since the trip to Disney for Sammy's wish three years ago.  We are very excited to all be happy, healthy and ready for some fun in the sun!

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.  

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

Family Fun

So much has happened lately, I really don't know where to begin.  Basically, We have been enjoying life while keeping a watchful eye on swollen glands.  I guess I should start with that so no one is left worrying.

Sammy's glands are 'normally swollen'...just like an other kid....according to Dr. C who is the head honcho of Sammy's doctors.  All is good with Sam.  He remains in remission and his blood work is clear. His running is improving and people constantly comment on how great he looks.  We are very fortunate and inwardly celebrate this almost every minute!


Sammy celebrated turning 8 recently.  I cannot believe he is growing up so quickly.  Where is the time going?  He has wanted his own pet for some time so I thought a fish might be fun.  Here is the final version of that seed idea:

The cat likes them very much indeed!

And Sammy is learning how to take responsibility for his 9 fish:

Sammy had a wonderful party with his friends at his usual place...

And dinner at his favorite Japanese restaurant!

We also celebrated Jack and Sammy's cousin's first birthday. It was wonderful to see the kids playing together and know that Sam could keep up and just join in the fun without having to worry about anything.

Jack has been very busy also.  Baseball is in full swing (pun intended) and we all had fun at the opening day celebration... see here for news on that.  

I was given a delightful Mother's Day.  Having the luxury of a long lie in, we all headed off to the beach as a family, dog included, and walked along the rocks to the tide pools.  I was in my absolute element, being a total beach-lover.  I actually love the walks and views more than just sitting getting a tan....and Mother's Day was glorious!  We spotted birds, found sea-creatures and enjoyed the beautiful views.  The kids played on the rocks and I daydreamed about the beach houses dotted along the coastline.  Heaven!

We have really had some great times recently.  Pushing worry to the back of our minds was very doable and we are glad that we were able to.  Of course, all this activity (and there is more I shall share in later posts) means my house is a total wreck!  I like having no time to take care of it though....nowadays it is not because we are spending weeks in hospital, instead it is because we are doing things, volunteering for things close to our hearts, and having the life we had to put on hold for a few years.

Leukemia - On Our Minds Today!

So we finally had the "moment".  The one I knew we would have...eventually.  I just didn't realize how comfortable I had got until it happened.  So you're not panicking, Sammy is okay.  I am a little shaken and firing on major adrenaline with a massive dose of the 'oh craps' thrown in. Here is why:

About three days ago, Sammy came to me with pain in his neck.  It was the side his port had been on, so I figured he may have some aches at times or he was sore from all the playing he has been doing lately.  As I felt his neck, the hairs on the back of my neck stood on end..Sammy had lumps down both sides of his neck.

I had watched Sammy's neck develop swollen glads three years ago and, being completely ignorant of the signs and symptoms of leukemia, I did not rush off to the doctor.  We all know how that turned out.  This time, I still did nothing.  I observed Sammy and decided to wait it out a little as there is a lot of yucky sickness going around.

Today, however, I couldn't ignore my nagging feeling and I asked the school nurse to check Sam out.  She felt that his glands warranted a trip to the pediatrician.  Now, most teachers would call, make an appointment, and keep teaching.  Thankfully most teachers have not had a child with leukemia.  When a nurse says go, I go!  It was lunchtime and I got an appointment immediately (a perk of being a survivor) and my Principal wonderfully agreed to get my class covered so I could get back home to numb Sammy's finger ready for the blood draw.

I think a lot when I drive.  This drive shook me up bad!  I relived the panic and fear just after diagnosis.  I tried to push away dark thoughts about bone marrow transplants, radiation and more bloody steroids.  Leukemia is harder to get rid of the second time around.  Fear is a powerful emotion.

One of the toughest things to do is pretend all is well when you are crying inside.  Moms have perfected this art when it really counts.  I had to really conjure up my 'inner mom' and chat with the kids and pretend all was routine....Sammy still considers random blood draws routine.

The bottom line, after a very long doctors visit and through work-up: Sammy may have a virus as his counts are a little off but nothing to make one scream off into the sunset with manic desperation.  The doctor did measure Sammy's lumps, and we have to go back in two weeks to see if they have changed in any way.

The next two weeks are going to be very long.  It is Sammy's birthday on Thursday and we have his party on Saturday.  All has to be fine and jolly.  I reckon I can keep a stiff upper lip and keep myself almost rational about all of this.

Sammy looks and acts well.  He has no other signs of relapse.  He recently saw his doctors at CHAM and he was 'all clear' then.  I have to hang on to this.  I WILL hang on to it.  Sammy gives me strength so I am in good hands.  I'll keep you all informed.

Changes

Sammy with his crab at the school puppet show

Things are looking up! Sammy has realized he is improving, and the effects of chemo are not getting the better of him.  Yesterday, while we snuggled in bed, Sammy began talking about Easter and all the fun things he is looking forward to.  He hopes the Easter bunny will be kind to him even though he is getting older.  Then, out of nowhere, he suddenly remarks,

"Oh my!  This will be my first easter off steroids...no yucky feeling or medicine.  Oh I'm so happy!  I can have Easter without cancer!"  

Sam is so glad to be done and I'm really happy he is enjoying this time....he deserves to!  He also noticed something about his appearance as he was getting ready for school.  He came running out of the  bathroom and shouted,

"My head has shrunk!  I have a really small head!  Is it possible that I have a shrunken head?"  

The concerns were so genuine, I had to contain my laughter.  You see, Sammy had noticed what I had seen for a while; the moon-face created by the steroids has completely vanished.  Sammy's hair is also long and soft again.  The old Sam is back, and there is no trace on his face of past battles.

Mr. Moon-Face - the chemo changes Sammy's features dramatically

Immunizations - Gone!

One of the things we were told, way back in the midst of treatment, was that Sammy might have to have some immunizations re-done as chemo for leukemia can wipe them from the system.  Given that my little boy had been hospitalized pretty much for a year with a WBC of zero, we expected him to need quite a few.   Sometimes I am just not a big fan of being right!

During the last visit to the clinic, Sammy had blood drawn to check for antibodies and the need for more immunizations.  Low and behold, we discovered that he actually needs every single one of them done again!  He has no coverage...nada!  There are a few reasons I am 'slightly miffed' about this:

1. My poor son has to endure more pain and fear, as he will have to get shots each visit until they are completed (I refused to have them all done at once).  

2. I have to tell Sammy that celebrating the end of treatment did not actually mean no more yucky stuff!  He is going to be heartbroken and very scared.

3. I am going to re-go though all the angst of  immunization safety:  I agreed to immunize in the first place but was terrified of the MMR.  Ironically, it was just days after the MMR shot that Sammy was in the ER with strange symptoms...okay it turned out to be cancer, not anything caused by the MMR, but I'm still terrified of having to expose him to these drugs again.  

In the grand scheme of things, I am glad we have to re-immunize rather than face relapse, bone-marrow transplants another fight for life etc.  Things could certainly be worse.  But I am still disappointed that our journey continues to have speed-bumps, albeit much smaller than before.  I look forward to a smoother road in the future...sometime.

The Danny Fund

The Danny Fund was founded in 1993 when a four-year-old Pelham boy named Danny was diagnosed with a rare form of leukemia. To help, friends provided warmth, love and emotional support to let the parents know they were not alone. They rallied around the family and raised money through bake sales, winter softball games and word of mouth. Danny responded to his treatment, his cancer is in remission, and he is now leading the active and normal life of a 20 year-old. With the crisis behind them, the small group of organizers met. If they could help one family in a meaningful way, why not others? The Danny Fund was born.

Every year the Danny Fund holds a fundraiser.  It is a fun gathering of community members and patrons, along with Danny Fund families.  The mission of the Danny Fund is to help families whose child has been hit by a catastrophic illness.  We are one such family and we ask that you join us on February 11th or make a donation here. For more information, leave me a comment or email given2fly46@yahoo.com.   We cannot thank the Danny Fund enough for all they have done for us.  The video above says it all.

Read more about the Danny Fund here.  To see how we have been helped in the past click here, here, and here.

Light the Night

Superman Sammy was a wonderful Honored Patient at this year's Light the Night walk at Playland.  We had so many people come to support us, including friends form work, our neighborhood (even  though many had moved away), and as far as from California and Florida!!!  There were many orange t. shirts showing Sammy much love that night.

LPAC danced again and wowed the audience, and the overall turnout was excellent.  We have raised $8500 to date and there is more to come.

Sammy was cold and tired by the time he needed to go on stage...we had partied the night before with all our friends from near and far...so he was not as on form as usual once on stage.  He did well, however, and I spoke for him and talked about our journey, and how much I want the road we are all traveling on to be CLOSED for good...no more cancer!!!

Sammy and I had been videoed earlier in the day to promote LTN and Sammy was also interviewed by News 12 Westchester.  He really is getting to be an old pro at the celebrity thing!

Walking was wonderful, surrounded by so many people who were there to support us as well as the Warriors.  Peter had returned home from college to be there and was as much an inspiration as ever.  He really is the vision of hope that drives parents forward.

Final numbers and amounts have yet to be counted..I will let you know as soon as they are.  But for now, here are some pictures of the night: