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!

Merry Christmas

It has certainly been a fabulous Christmas this year. For the first time since 2008 we had a family holiday without the Cancer Monster in the room. Of course the monster lurked under the bed still, it always will, but we had a wonderful time and ignored the beast almost completely!

I love decorating the tree. I don't get to do the chic, color-coordinated tree of my designer dreams; instead I have the most spectacular tree filled with children's ornaments and happy memories. My tree has history adorning it. My tree is a family tree.


Our week off was very family oriented. We began with a trip to New York City to see The Grinch at MSG. It was so much fun. The kids enjoyed the thrill of being in the city and soaked up the spectacle of the musical numbers. I got a thrill out of being back at MSG having been there a week earlier for the 12/12/12 Sandy Benefit Concert. Then there was our visit to the tree at Rockerfeller Center which was magnificent. The kids had seen it before, but had been too young to remember. We were finally doing the trip we wanted to become a kiddy tradition every year...finally. I was acutely aware of how lucky we were that we could start our tradition now.

Christmas Day was a family affair once again. Cousins and grandparents joined in the merriment. The boys loved their gifts from Santa, and I was rather impressed with myself for cooking the roast lamb to perfection....I'm not a cook so I toot my own horn on that one!

Boxing Day (as I will always call it being British) was quiet and a chance to hang out together without any agenda. A little shocked by how quickly Christmas comes and goes, I settled in to enjoy my sons playing with their new toys and joining in the odd board game or two. I ate the leftovers...the plebeians chose not to for some inexplicable reason!!! Crazy!




Being a couple is not easy when you have kids. Our couple time had become non-existent during the treatment years and we were finding it very hard to get our grove on as a partnership in anything other than medical and discipline control. Thankfully, Nana and Poppa came to the rescue with a precious gift, the gift of time. They took the boys for a two night sleepover. Talk about win-win! The boys were very excited and I came in after dropping them off to a house filled with a roaring fire and candlelight. Some much needed time together was spent actually talking to one another about us and our interests, rather than the kids. Note to self...do this more often!

Another big event was Sammy's first ever sledding day. Although he was given the all clear last year, there had not been any snow...go figure! Finally, we set out, all bundled up, to watch as our precious children hurled themselves down steel and slippery hills, crying out with delight at the thrill of feeling the snow kiss their cheeks and the wind whiz past them as they hit top speed just before reaching the tree line :-) I was not concerned, protective or afraid for them. I loved it! They were free! They were kids! They were happy, and so was I.

There were many jobs I planned to do over this vacation, and I must admit they did not get done. They await my attention, laughing at my procrastination. But I don't care! I laugh back at them because I have had a Christmas to remember for a lifetime. My boys were happy and healthy (ignoring the panic of the small spots appearing on Sammy and the rush to CHAM to check him out) and I got a chance to feel like we could really doable normal things families do during the Holidays. We knew the cancer monster was around, but he was well hidden and a little scared to show himself with all the laughter and merriment filling the house.

So, I wish you all a very Happy New Year! May we find the cure in 2013 and bring joy to thousands of families fighting monsters.

Thankful

Today is Thanksgiving Day.  An American holiday which I have celebrated over the past 15 years.  I enjoy going to my in-laws and seeing my extended American family.  I miss my British family, but it doesn't his me as hard as Christmas, the holiday I have celebrated all my life.

Thanksgiving is a nice holiday where people gather and enjoy one another's company.  It is, in fact, a lot less commercial than Christmas, which I appreciate!  But the best thing about Thanksgiving, for me, is that I get to really be thankful.  I am one of the luckiest mummy's in the world.  I have both my boys with me....and I almost didn't!

You know about Sammy, but Jack was no walk in the park either!  He decided to come out after just 24 weeks gestation, so I fought to keep him growing inside me with Magnesium, a Terbutaline pump and months of bed-rest.  We made it to 36 weeks and only a few days in the NICU after some complications from the emergency C-section!  At five years old, Jack was diagnosed with Bacterial Meningitis.  He had an emergency lumbar puncture and, after 10 days in hospital, we administered medications via a picc line in his chest.  He and Sammy both have neck and chest scars from their lines.

With our crazy battles to keep our children healthy, I really do appreciate spending today with my sons.

• I am thankful for the excess laundry I do with two boys who can always find the dirtiest place to play
• I am thankful that I get prodded awake in the wee hours of the morning to tell someone they are okay after a nightmare
• I am thankful that I have to say no to social events because my kids need me for one of their events
• I am thankful that I have been known to have a mini-meltdown as I work out how to get my kids to tidy up
• I am thankful that I can hardly type because Sammy has just sat down next to me, pinning down my right arm and chattering away as he plays his allotted time on the Wii 

There are so many other things I take for granted too often these days but I am reminded just how lucky I am today.  I am with my boys, I'm about to make a dish to take to the family gathering, and I am complete....not sane by any means (but that is because I'm a mom).  

                                             Happy Thanksgiving one and all!  

Pre-Existing Conditions

This is a very difficult post for me to write.  Mainly because I know most of those reading it will already know the pain of having a child with cancer, or be a cancer warrior themselves.  I don't need to 'tell' you how things feel!

But for me, I am getting something off my chest...you know I use this blog to do that.  And, sadly, this post does not apply just to cancer, but all conditions which may have lasting effects on a person, no matter how old they are, for the rest of their life.  I include Sammy's brother, Jack, in this post.  He has asthma.  He has a pre-existing condition, just as Sammy does. I am also including anyone with Lupus (my lovely mom), Celiac's disease (my wonderful friend), Crohn's, Diabetes, etc....  There really are too many to mention.  BUT, I guarantee, you will know someone who suffers from such an illness.

So what is on my mind?  Well, there is a big election coming up, as you know.  I am well aware that everyone will have their own political views (we live in a nation that grants us that freedom), and I would never seek to insult anyone for their personal viewpoints.  I do, however, want to share my thoughts.  I am sure many of you already know where this is going.  I am putting my personal faces to this argument, but you could easily think about someone you know.

People who have fought and survived cancer have a much higher risk of getting a secondary cancer due to the treatment that saved their lives in the first place.  Chemo and radiation are toxins designed to kill!  Yet the benefits of saving a life immediately, far outweighs the concerns down the road.  Medical research has allowed doctors to find ways to administer the least amount of toxins in the most effective way.  But almost all the childhood cancer medicines are over 50 years old, so they are still exceedingly outdated and very dangerous.

Sammy will be monitored for cognitive effects.  His IQ may well drop considerably in a few years.  He will also need PT for most of his life to maintain his muscle and skeletal strength.  Every major organ has to be checked yearly to asses for deterioration.  His heart may give out in his thirties.  His reproductive abilities may no longer be an issue....he may be sterile.  He is 8.  He has kicked stinking cancer and this is what he will face forever.

If a certain party is elected into national and local governments, funding for research to continue to improve toxicity in treatments will stop. In addition,  Sammy will not be able to get insurance for any of the aforementioned issues once he is no longer on our insurance plan.  If he relapses, it is likely he will exceed the lifetime cap on our insurance (not that we have one right now, but it will come back), and we will not have the means to provide the treatment needed to save his life again.  We earn too much to get financial assistance, so we would be faced with bankruptcy.  (Fine...if it saves his life...but all it will mean is we are broke and still no coverage!)

Radiation

Jack may grow up with very few issues with his asthma.  He does, however, need medication for it and frequent visits to a pulmonologist.  While this may not break the bank, if he should suffer an attack and need hospitalization, nothing would be covered. That has the potential  to leave him without adequate treatment or crippling bills.  I would sell my soul to help, but WHY should my children have this to face as they grow up to become the new generation of America?

Sammy's first hospital visit after diagnosis cost over $100,000.  We then spent most of the first year in hospital (averaging about $150,000 per stay)  followed by two more years of treatments.  Sammy will go to the clinic for the rest of his life.  No insurance....????


I am a mother fighting for the lives of her children.  Sure, they will be grown up by then...but I am fighting NOW to keep them alive and safe in their future. It boggles my mind that I even have to....but I do!  November 6 is my birthday.  I hope I don't spend it morning the future of my children.

I do not fight alone.  Adults and children are affected by the threat of punishing people with pre-existing conditions.  Here, a hero of mine, Mike McCready, explains why the fight is so important:

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.   :)

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.

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.

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!  

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!

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: