Award!

Life has been a little crazy around here so my thanks to Mask over at The Enigmatic Masked Blogger is a little delayed but sincerely given.  Mask has warded me The Stylish Blogger Award.

I need to tell you more stuff about myself...see A Lovely Surprise for the last list all about me.  There you will also find the first list of wonderful blogs I frequent and enjoy reading.  You should definitely check them out.

More about little ol' me:

• I have a phobia about shellfish
• Blue is my favorite color
• I hate writing things about myself (yes, I know this blog is all about me, myself and I, but that's different!)
• I like to break rules
• I'm going to break the rules and move onto the blogs I recommend!

As my blogging has grown into more than just venting....I kinda got sucked into enjoying the interaction between bloggers, the support it can offer and the opportunity to focus on other people too.  Below are some blogs I enjoy for various reasons.  I hope you enjoy them too.

• English Speaking Zone
• A Prayer for Asher
• off on my tangent...
• My Life With Zane
• Memoirs of a Writer
• Never Give Up

There are many more great blogs I love but these will get you started!  Some are new, some are very established, all are special to me for one reason or another.  Please stop by and check them out.

Thank you once again my masked friend for giving me this award...I am honored!

  

Swimming Lessons

Sammy had his first swimming lesson today.  I was delighted to see the camp counselor from the previous camp days arrive at the door to greet the kids: I did not have to go through the whole, "Hi, this is Sammy. He has leukemia," thing again.

The kids divided into two groups and off they went.  Sammy limped on the land, but glided along with power and grace in the water.  His disability no longer showed, in fact he excelled within the group!   I was a very proud mummy.

Sammy must have some charm because he had gone into the lesson convinced he was going to persuade the instructor to let him dive (well jump in off the board).  Diving is not on the agenda for the Beginning I class, but sure enough at the end of the lesson seven little ducklings were jumping off the board with glee. I have a feeling this kid will go far!

Camp!

Sammy bounced back nicely from five horrendous steroid days.  He is at camp as I type...at his own request...playing sports, swimming, watching movies and generally being a kid!  I am so happy camp is possible this week.  We have also signed him up for swimming lessons every Saturday.  We are going for normal while we can.

So the camp is at the Italian Center and is, in no way shape or form,  a special camp for kids with cancer.  My mummy radar is up at all times, checking for the vibe that tells me to break land-spead records to get to the IC to rescue my chid from some major catastrophe such as a foam ball to the head!

I am also beaming with pride that my little man has continued to be so independent and confident.  His brother is not doing the camp with him due to a high fever and some kind of yucky virus.  See Jack's own blog for details.

Independence has always been a strength of Sammy's.  Being restricted in so many ways must have driven him crazy over the past year and a half.  We are open to giving him as many opportunities as we can to continue being 'normal' and enjoying new experiences.  I WILL swallow my angst and deal with it...what's the worst that can happen?  And kids do get bumps and scrapes...it's part of being a kid so why deprive Sammy of these rites of passage?

Yesterday, Sammy returned home rather achy and tired but happy.  He had made 'friends'...he was not willing to actually ask them their  names, but hey, at least he got to interact with kids!  He also really wanted to be signed up again for today,  so we did...I think/hope we are seeing the beginning of a more sporty Sammy emerge!

I do not know what today will bring...Sammy was very stiff this morning but happy and eager to get to camp.  As I waved goodbye, he was in the midst of a group game of dodgeball....oh yay!  and having a blast.

This is a big development for us as a family.

Therapeutic Range for ANC

Now that Sammy is in Long Term Maintenance (LTM) the goal is to have his nadir (lowest point of ANC level) reach the therapeutic range...in other words...the lowest it can be to kick cancer's butt without going below 1000.  At this point, almost half way through LTM, we still have not got those counts into the therapeutic range...thus, Sammy's chemo continues to increase.  

This is frustrating beyond belief.  Apparently, it is better than some children's experience of having their ANC drop so low, they are constantly taken off treatment.  Such is the individual nature of this particular beast...every case is so different.  


I am compiling a spreadsheet of Sammy's blood counts and ANC's so I can visually see the trends as the chemo is increased.  Call me crazy, but I need to know what is going on and find I can often get more out of the doctors when I go into the clinic armed with my own attempts at figuring it all out.  It gives them something to go on as we talk....surprisingly, I am often fairly on the right track, despite a distinct lack of  medical knowledge.  


Cancer moms tend to have an amazing ability to decipher so much jargon in their desire to have some control over something they have absolutely no control over.  Okay, you can lock me up now...I know I sound completely insane.  Cancer Moms...you know.  Take a look back at Shoes for a reminder of our new normal if you wish.  

Semantics!

Recently at the clinic, I had a long conversation with Dr. R.  As you know, I have been concerned about the increased dose of mercaptopurin (6MP), and I had emailed Dr. C with my concerns.  The conversation continued with Dr. R. and I was utterly shocked at what I heard.  Now, I know we are on track and all is going to plan, but I could not even put this down on paper until now, such is the heartbreak at the news.

Sammy was probably born with the Leukemic Clone that was triggered at age five and turned into the leukemia we found growing in his body and filling his chest cavity over a year ago.  The trigger could have been anything…we try not to dwell on “what if?” and just accept it as it is.  It was my understanding, and most peoples’ as far as I can tell, that once the cancer is in remission (undetectable), then we would begin counting up to the five year mark when the patient, Sammy, will be considered “cured”. 

Well, it turns out, “cured” is a matter of semantics.  While we are increasing chemo, adding to the toxicity of Sammy’s treatment in the hopes of getting to therapeutic levels to fight off any chance of relapse, we are never going to get Sammy “cured”.  Leukemia patients are born with the Leukemic Clone and it is a glitch in the system; it cannot be got rid of…. it will stay with him forever. 

I know there is a HUGE chance Sammy will not relapse after five years of remission.  But knowing he will always carry the clone scares the hell out of me.  That’s just me… I am a born worrier… but there it is. 

Later... I just put Sam to bed with our customary snuggle and chat.   He commented that a cold is bad (we both have one), but cancer is worse than that!  "Still," he added philosophically, "there are people who are much worse off than me, because they have things that never go away."  I will never tell him what I know.  And I love, beyond words, his optimism despite his daily battles.  

Awards and Honors

Last November was our first Light the Night walk to raise money for the Leukemia and Lymphoma Society (LLS).  Yesterday evening, the family attended the Award ceremony to honor top fundraisers and celebrate the success of the walk.  Over $800,000 was raised and awards were given to family teams, corporate teams and individuals.  Thanks to the support of our wonderful family and friends, Team Superman Sammy was awarded a place in the top five fundraising teams in Westchester County.  Sammy literally glowed as he went up to receive the award from the stage.

It was an emotional night.  We met up with Peter's family, and Dr. C was also in attendance as Montefiore Hospital had raised money for the cause too.   I also met the mom of brave A from Anthony's Army...a young boy who also has leukemia.  I 'met' his mom through a mutual friend and we became Face Book buddies.  It was wonderful to actually meet her and we discovered there was something else A and Sammy have in common...

They are the 2011 Honored Patients!  This means they will become the faces of the walk in the media and all promotional literature.  They will attend the various functions arranged throughout the year and will feature in the actual Light the Night walk on November 5th.  This is a HUGE honor and a chance for Sammy and his family to actively help others.  Sammy was very happy to take on his new role, and I hope it helps to teach him about compassion and caring.  He is still fighting his own battle but we feel it is time for this change in attitude for all of us.

So....without further ado, I present to you the wonderfully brave boys who will lead the walk for the cure:

Jack's Birthday

Today I am going to dedicate to my beautiful Jack who celebrates turning nine. Today is not his actual birthday, but I was, happily, too busy doing birthday stuff to blog and way too tired by the end of the day to even consider turning on the laptop!


First, let me express my utter shock that I have a nine year old. Where have the years gone? I know some of you with older kids will be laughing inwardly at what I have yet to 'look forward to" as the teenage years grow closer.


It only seems like yesterday I was carrying Peanut inside me, hoping he would stop trying to emerge into the world before his due date. (Jack wanted to come out at a mere 24 weeks!)


So I now have this amazing child; strongly affected by the events over the last year and a half, I have no doubt, who is tall, athletic, and good looking...yes, I am his mummy so I can boast a little, but others have told me so too! He is kind and considerate to the extent boys his age can be, and he is competitive with, yet protective of his brother.


Jack desperately wanted an XBox game console this year. While we have strict rules about the amount of 'game' time the kids have each week, we decided to make this birthday a time to spoil him a little. (Yes, guilt at not being able to keep Jack protected from the whole "Super Sammy: most famous and talked about kid in Jack's universe" has played a HUGE part in that too.) The proviso was that we would not throw a huge party as we were putting the money into the gift instead. So....we had a sleepover party....what were we thingking?????


In actual fact, it was a great success. Jack invited a friend from school and his best friend in the world EVER, M to stay over. The gametime rule went out the window and the boys XBoxed the day away until dinner at the Hibachi restaurant, followed by a family/friend movie session.


The morning after consisted of homemade pancakes and pinata fun! It is amazing how much fun the boys had with the five dollars worth of junky toys can keep four boys happy for a long time!
Jack did comment later that he might not be up for a sleepover for a while as he really needed more peace and quiet to get a good nights sleep...bless him!


Here are the snapshots of the big weekend event:

Guess who put the 9 on backwards!!!  We fixed it just in time.

Postaweek2011 - if I could Pass Any Law...

 

People Against Childhood Cancer

Okay, here is the next attempt at responding to the prompts provided by the Postaweek gang.  It is controversial because it is an ideal...I know it could never be put into effect...but it is my ideal!

Creating a law that forces people to do something for someone else may be taking the role of Government too far, But what about just asking people to learn about people who need help and then letting them decide what to do with that information?

My law would never take effect because it would rely too much on the ability of humans to change behaviors which many argue are part of our wiring. Many would also argue it is unconstitutional.

I would love to have a law that, in some meaningful and doable way, required every one of age to spend 30 minutes per month learning about other people who need help in some way.   It could be major issues like children fighting cancer, refugees being slaughtered, or victims of a natural disaster. Or it could be small...local neighborhood food drive, elderly assistance, literacy programs for young, underprivileged children.

I am not even asking that people act upon what they learn...forced help is begrudged and less effective, perhaps destructive. But if everyone had to take a look at others' plights, I believe two things may happen: firstly, we will appreciate our own lot slightly more. Secondly, we may even get charged up enough to tackle one of the issues and actually, willingly help.

This idea could cross over into learning about issues such as global warming, wildlife preservation, domestic and child abuse....the possibilities are endless.

The only thing the law would require, however, is time for people to learn about these things and ways to help. After that, it is up to the what they do with the information.  I also believe this is a pipe dream as forcing people to look at others' troubles takes away their rights to make decisions.  It is a catch-22 situation:  how can people make informed decisions without the information?  What do you think?

Meanwhile, for those who don't need a law to encourage you  to help others in need but just don't know who to help, here is an amazing idea which I originally read on a blog I adore;  Thumbin' My Way.   On this blog I read about  Love Drop.    Love Drop is a micro-giving network of people who unite as a community to help one person or family a month. By subscribing to the team for as little as $1, they make it easy for members to change lives in a fun and easy way. Each month Love Drop delivers a unique combination of unexpected financial gifts, personal encouragement and the support of local and online communities.

This has nothing to do with leukemia...it is a way to put out good things without a selfish motive...the art of true caring.  Thanks to S for bringing  it to my attention.  I hope in its small way, it helps my "law" become practiced even thought it has not been ratified!