Light The Night Kick-Off

As an honored patient of the Light the Night Walk this year, Sammy was asked to be part of the Kick-Off ceremony.  He is one of the faces of blood cancer!  He is the face showing the reasons why people are asked to walk and donate money.  Here are some more reasons to give:

•  Childhood cancer is the #1 cause of death by disease in children under 20.
• When children are diagnosed with cancer, 80% have advanced stages of the disease, compared to 20% in adults. Many children are originally misdiagnosed, which leads to greater suffering and many times, death.
• One in five children diagnosed with cancer will die. In some forms of childhood cancer, one in five will live.

This information was taken from a website written by an incredible young cancer survivor whose post is in honor of a child who passed away last week.  We walk for people like Ethan Jostad and Melinda Marchiano.

I know I am talking about more than blood cancer, but the LLS has been finding treatments for blood cancers which actually have become successful in treating many other forms of cancer also.  

Sammy was a trooper having had his lumbar puncture earlier that same day.  He was exhausted and pumped with more chemo than usual, including steroids, but he talked and smiled and socialized like a pro!  He joined me as I gave a brief speech honoring Sammy and explaining why the walk is so important.  He even ended the speech saying he's going to kick cancers ass!!! The room was in uproar...I was shocked but immensely proud of his resolve.

We now start the campaign to really get as much money as we can to help save the lives of both children and adults.  The LLS is also now funding research for the dreaded Late Effects which will be looming over Sammy for the rest of his life.

I am proud of my son for all he is willing to do to help with this fundraising.  At the same time I am devastated he is the face of cancer!  Not my son!!!!  Yes, unfortunately cancer does not care who you are...the beast will become part of your life if it so chooses.

Please help us find a cure and beat the beast once and for all....I don't ever want to see a child posted as the face of cancer, even though it is in the positive light of fighting for a cure....no-one should endure this!

If you live locally (Westchester/Fairfield) you can sign up to join Sammy's team and walk with us.  It is a wonderfully fun night...Sammy will also be speaking on stage!  To join, just sign up on Sammy's team page.  (See link below) If you cannot join the team but would like to make a donation, the link is the same, just follow the prompts.  Any amount is welcome, no matter how small you think it is.  Details about the walk are on the webpage:

Join or Donate to Team SuperSammy  

Thank you so much to all those who have donated or signed up to walk already...your support is priceless xxxx

MRI

This week marked the beginning of summer for the family.  Usually this is the week we spend time together, catching up on little things around the house, and basically heaving a huge sigh of relief that we get some down time.  After the first week, Brian usually begins work and I get to have fun with the kids.

This summer did not begin in such a wonderful way.  Sammy was on week one...steroids...and you all know what that means by now!  Unfortunately, Sammy wasn't the only one with 'roid rage' as Brian had been put on them to try to sort out an ongoing issue with his breathing and sense of smell.  Having both on steroids was beyond words....poor Brian was in shock over how badly they made him feel.  The worst part, however, was seeing the sadness in Brian's eyes as he realized exactly what our little man has been enduring for almost two years.  There is a new sense of admiration and understanding that only someone who has been on the 'evil poison' can understand.

On top of that, Sammy now faces several tests to check for issues relating to his infections and his inability to walk properly.  Sunday was MRI day.  I took him down to CHAM and we went through the labyrinth beneath the hospital to the 'Silver Zone" where the MRI department is located.  Upon arrival the receptionist took a quick look at little Sammy in his stroller (legs not working well that day) and aaked..."There is no sedation today so can he keep still?"  I took a moment to wrap my head around this greeting and then replied, "Well, he's seven....I have no idea....but he's fine with the open MRI."

Now, one would think that a hospital would understand that scheduling a child for an MRI would automatically be better off if it were done in the open MRI chamber.  Nope!  AND, one would think that, given it is the parents' responsibility, apparently, to know that in order to get said open MRI, they have to request it themselves, that more information would be provided so parents can make said request!  NOPE!  Then, to add to the insult, the only day a child cannot be sedated is Sunday, so they decided to schedule Sammy for that very day!!! Genius!

Well, I have to say my Sammy was amazing.  He was totally freaked out and cried and stressed at first.  I  was, thankfully, allowed to be in the room with him (I am a great candidate for radiation induced cancer at this point) and I found the best way to comfort him was to stick my head down the chamber and stroke his thinning hair while shouting at the top of my lungs to be heard above the noise.

What a sight we were.  Little feet sticking out one end, and my fat bum sticking out the other!  It was a pretty comical image to picture once it was over.  While I was 'in' the machine, I found that I owed Sammy a bagel from his favorite bagel shop, a special late night, and Nana Haze now has to take him to the toy store to reward his bravery...ha ha...finally got out of having to do it myself :)

Once again I am in awe of my son and his ability to work through his fears and overcome them.  He was terrified in that machine, feeling claustrophobic and convinced it would break, but he did not once need to stop or come out.  He saw it through and all the tests were complete.  He's sick of testing but knows there are more to come...tomorrow in fact.  Hopefully I will have news about the MRI results too.

Tomorrow Sam will have a TENS machine checking his muscle and nerves.  He will then have acupuncture needles all over his legs.  I am not sure how we are going to get through this one...but we will.  I know Sammy will become master over his terror and we will do the tests.  He will gather up his strength and demonstrate his ability to be 'relentless' in fighting his cancer.  This is his new word...he read it on the LLS bangle he was handed at the BBQ we attended tonight.  As we were leaving he quietly said to me:

"Mummy, I am not going to give up.  I am sick of all the tests and treatment but I am going to keep going.  I am going to kick cancer's a-s-s and if it comes back, I'm going to kick it again!"

I love my son, my hero!  ( And no, I didn't tell him off for spelling ASS!)

On Again, Off Again!

The week has gone by at a snail's pace.  Tensions are high as we are all suffering a basic case of 'sick of it" in this house.  Sammy cried his eyes out when the doctor told him he had to keep his cast on for another three weeks.  You could almost see the band of angst surrounding us all...manifesting in each family member in its own way.

Breaking the taboo of being a nut job, I admit to my first real anxiety attack.  Not pleasant, and a big wake-up call to how this whole thing is getting me down now.  Hopefully, having been to my internist to explain that my coping skills have got up and went, and are now becoming physical issues such as fevers, headaches, the feeling of shaking inside my body, and the never-ending exhaustion, I will find someone who can help me more.  Yes, I have been to a therapist, but I think I need to try someone else.

Sammy had his Day One of the cycle on Thursday, meaning steroids and heavy chemo.  We brace ourselves for the onslaught to come!  On a happier note, the doc at Montefiore took his cast off....yippee!  Long story about all of that, but this doctor actually x-rayed Sam and checked his foot without the cast before declaring him fine to hobble along without it.  Pool, here we come....after the baseball is over!

Jack has had baseball, either a game or a practice, almost every night for the last two weeks...talk about taking it seriously!  We have somehow managed to get him to each one and even watched every game.  Jack is in his element, he needs this, and we are determined to give it to him.  We even had him blow off homework one day...great teachers we are!

This weekend is steroids, baseball, and the theatre.  Jack has early morning baseball.  We are going to see the middle school production of Alice in Wonderland...they are donating a percentage of each ticket to Sammy's LLS fundraiser.  I am actually 'performing' on Sunday so I have the dress rehearsal on Saturday, performance Sunday....hide in embarrassment and shame the rest of the week!  We are hoping Sammy's steroids don't throw a spanner in the works...gulp!  The good thing about this crazy weekend is that I will be too busy to have another panic attack..I hope!

Cancer moms/dads, here me now....I am at the 'easiest' stage in Sammy's treatment....it is the hardest stage for me.  I know everyone is different, but I know of other cancer moms/dads who have had this experience.  I am not conquering my anxiety yet, but I do know I can't try to do it alone.  I urge anyone who is feeling this way, no matter where your child is in treatment, to seek help, do things for yourself, make YOU better so you can help your family.  I will journal my personal hell to help others see they are not alone.  I am not looking for pity...it will pass!

Un-cancer moms/dads, know that when you ask a parent who is years into treatment of their child's cancer how things are, you will not get an honest reply.  We say, "Going well," or "Everything is as planned"...what we mean is "Help me I am drowning in this, and I don't know what to do to get myself out!"

Have a safe and happy weekend....I will be dancing my little heart out...great therapy :)