New Year - Yup!

Well 2012 is upon us and Sammy is cancer free and off treatment.  I was reading back at last year's post and I hardly recognized myself.  It is amazing the toll the last year has taken, despite my very optimistic outlook and resolve to make it a good one.  Fail!!!!!  Read here to see what I said a year ago.  

We had a lovely New Year's Eve at a very close friend's house.  We all stayed over so as to be safe from the drunks on the roads.  We all drank enough to consider it a special night, but no hangovers anywhere!  I, however, slept in until midday as I was so wiped from the night of merriment...my body just ain't working for me at all!  

New Year's Day brought a new ‘treat’...Sammy had a fever of 102.7.  Now just two months ago that would have put me into a catatonic state...and led us straight to the ER...do not pass GO, do not collect $200!  But, now that Sam is off treatment and his port is out, he can be treated by his regular practitioner.  That took a bit of getting used to.  Of course, I called CHAM anyway, just to make sure.  They told me his blood counts had been great on Thursday and there was no reason for them to see him.  

Two days later we got to see the pediatrician (holidays can be such a pain).  Reviewing the history, the doctor decided to take no chances and ordered a full CBC (complete blood count) and several tests for blood pressure etc.  

The strangest thing was, we were in room 13. Sam was diagnosed on the 13th...our lucky number as he would have died had we not caught it when we did.  Yet I had a minor freak-out that it was all happening again...we would be lucky to find it again so as to save his life in room 13!!!!

I remained calm but realized that any small anything was going to induce a terror within that would grip my insides like a vice.  Even the doctors would not just treat as 'normal' but run tests just to be sure.  New Year was a new normal.... off treatment, no CHAM each week, less testing, more "I wonder if..."  

Sammy is still off school as his fever remains and he now has a sore throat.  All part of any school kid's run-of the mill illness.  But I'm looking hard at his glands, checking for petechiae, watching for bruises, and noticing every moment his energy level is down.  

Sammy is sick of being ill.  He has had enough.  He want’s to run and play but the late effects are kicking in and he has mobility issues with his right leg.  This wonderful, brave, and resilient boy is ready for some time off.  He deserves it more than anyone I know.  

I am no longer saying, "At least it is a normal illness this time."  Because it is not fair that Sammy has to feel bad yet again.  I'm not finding the positive outlook is working anymore.... gosh, it has run me into the ground...but most importantly, I am pissed off for my son.... he needs to have a break!  Give my son the gift of good health and leave him alone for a while!  

Merry Christmas

PTSD

So things are going well with Sammy.  His blood counts were good at our last visit, he is becoming more active and his old personality is emerging.  The latter can actually be a little challenging, as he was a feisty fellow with an iron will and the ability to argue like a professional lawyer.... but that also helped him get through his battle.

Jack is okay.  He has some anger issues that he talks openly about to me, and I feel he might need some counseling to resume in order for him to work through his issues.  'Treatment being over' doesn't mean the feelings go away.  In fact, whole new sets of troubles arise.

No one likes to admit to being weak and unable to handle situations.  That is not what I am doing with this post, in fact. However, something new is developing, or rather has been brewing over the last few months.  Basically, my own body has launched an all out attack on me.... it doesn't want to do anything anymore, and it keeps telling me to quit and go to sleep!

Surely now is the time for me to be getting all excited about the future ahead of us, the gratitude for our beautiful son being able to live his life, the thrill of less hospital visits, and the return to normalcy?  But it is not.  We hold our breath every time Sam is tired, gets a pain, or falls badly.... not actually as much as I thought I would, but it is still there.  Yet, now the worst is over, I am sick...sick and tired...ALL the time!

I have gone through many tests.  My body is strong enough to run a marathon!  I am fine!  I am healthy! I am loosing my mind!!!!!   Yep!  I am actually diagnosed with Post Traumatic Stress Disorder...what kind of a frickin' wimp am I??????   There are parents who have been through all of this and lost their children...seven every day to be precise!  45 parents are given the news their child has cancer every day, you don't hear of all of them cracking up and needing to sleep all day once the worst is done!

But that is why I'm telling you about it.  It is not something that is talked about.  And seeing how this blog has basically been a bare my soul, warts and all kind of experience, why stop once treatment is over?

I literally cannot get through a day at work and then function at home.  I am on meds to help and I am actually calm and don't get angry, panicky or 'stressed'.  But, and this is the big but.... I am exhausted to the point of not being able to do anything almost all of the time.  I push and get through what I have to and then, sometimes, collapse in a heap on the couch and ignore the kids and leave my lovely Brian to do it all.  I have no choice.

Going out to enjoy myself has also become a chore.... I have made so many apologies lately for missing functions...because I literally slept through them...I have lost count!  A good friend had a 'talk' with me yesterday and dragged my butt out to a party.  She saw me today and commented on how absolutely wrecked I looked...it took so much out of me.  I did enjoy being out, but payback is a bitch and I didn't even drink too much!!!

So what now?  Therapy again...this time for a more extended period, done properly!  I know I have hit bottom, as I have had to keep my chin up, work with children who deserve nothing less than 100%, look after a sick kid, keep my other son sane, and juggle daily life too!  I managed for two years, it is time I let my body rest.  Impossible...all the above still apply to varying degrees.  But anyone who thinks parents of kids with cancer are okay once treatment is over and their child is on the road to a normal life could not be further from the truth.  Now is the time the parents are collapsing and clinging on for dear life!

I will be fine.... other parents will be fine.... but I am sharing a reality that is such a big elephant in the room.  Life AFTER cancer sucks too!

Fun and Laughs...

Samuel Zweig from Just So You Know on Vimeo.

Giving Thanks and Celebrating

We have just had the most amazing couple of days for many reasons.  Firstly, we were able to be truly thankful that Sam and Jack were able to enjoy Thanksgiving in a regular way...no fears about neutropenia, fevers, or admissions.  We were also spending Thanksgiving with MANY family members who were flying in from all over the country as well as driving great distances.  And finally, we were going to host all those wonderful people for the Jack and Sammy Celebration the next day.

Everything was wonderful: great food, company and spirits.  The youngest children, the new generation of cousins, bonded beautifully.  Our generation marveled at our being the parents, and the older generations enjoyed watching the little ones have so much fun.  It really was everything a Thanksgiving should be.  We even got to celebrate Sam and Jack's Great-grandmother Lulu's 90th birthday!!!

The Jack and Sammy Celebration was also fantastic.  Once again the little ones bonded and solidified their relationships.  Cousins and their spouses chilled out with a few drinks, some silly card games, a game of "Shot Checkers" and also enjoyed playing with the kids.  Jack and Sam enjoyed being the hosts...the mimosas flowed (not with the kids) and the party was ON!  I'm going to let the pictures tell you the rest.

Playing football

Sad when you can't run as fast as your little cousins :(

Jack and his cousins

The Lego Tower of Thanksgiving!

Forming the new band

Big cousin makes Sammy a flying Space-ship...much cooler than an airplane

Generations

Lulu looking very good!

My special boy, Jack

Cute!

Celebration cake

Together!

Brothers forever!

Big and little cuz

Our wonderful aunt and uncle

Artistic moment

The boys take a turn

More Space-ship creating....competition about to start

Beer-shot Checkers!!!

The family

Sammy's back!

No More Words!

Now that we are in the 'after treatment' phase, I am lost for words most of the time.  Sammy's port comes out tomorrow and then we become monthly visitors for blood work, have cognitive and vital organ testing each year, and basically plod on with life.  Cool!

But I wanted to put into words how I felt about this journey and I couldn't...so I cheated and made a slideshow with a song that helps me say it all.  We triumphed over adversity and had a whole lotta love along the way to keep us going.

Love boat captain
Take the reigns and steer us towards the clear,... here.
It's already been sung, but it can't be said enough.
All you need is love

Is this just another phase? Earthquakes making waves,...
Trying to shake the cancer off? Stupid human beings,...
Once you hold the hand of love,.. it's all surmountable.


Love Boat Captain
Pearl Jam

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: