Friday, January 3, 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.

Saturday, February 16, 2013

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!

Monday, December 31, 2012

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.






















Thursday, November 22, 2012

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!  


Sunday, November 4, 2012

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:


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