September - A Big Month for Childhood Cancer!

I have just come downstairs after hugging my lovely Sammy for over an hour as he suffers severe pain in the testicles and stomach.  We are two days clear of the steroids but they have built up so much in his little body that the effects stay a lot longer and are more severe.

While the usual treatment cycles are continuing and the steroids are getting harder to bear, we are slowly creeping to the finish line.  Unfortunately, the finish line is not the end of the road....our journey lasts a lifetime.  But that is okay....I am going to take a full, get to old-age, need diapers again and false teeth type of lifetime....over any late-effects shortening lifetime!

September is Childhood Cancer Awareness Month.  Funny how Sam was mis-diagnosed by four doctors during the very month everyone should be ultra-aware of childhood cancers!  I, however, did not know it was such an important month before September 13th, 2009.  I had no idea and really didn't give it much thought.  I sent donations to St. Jude's and felt I had done my bit!

Many of you reading this will already know it is a special month.  Sadly, you will be on a similar journey to my family.  You will know the statistics, the pain, and the feeling of hopelessness when cancer just overwhelms you.  Some of you will not have known, not because you don't care, but because pink ribbons get more air time than gold ribbons.


Boston.com highlights some of the children and their families in a beautiful way.  Take a look here   Scroll down to the comments for a chance to read about hope, joy, sadness and loss.  All part of childhood cancer.  As I type, there are 1080 comments!!!!

Statistics are boring, but not when your son is one of them.  So here are a few just to raise awareness:

• This year it is estimated that 10,700 children will be diagnosed with cancer un the United States
• An estimated 1,340 of these children will die from their cancer
• Almost one-third of the deaths will be from leukemia
• Since 1975, there has been a 55% decrease in childhood cancer deaths
• Cancer is the #1 cause of illness-related death in children

http://www.candlelighters.org/Information/AboutChildhoodCancer/ChildhoodCancerStatistics.aspx

Parents, like me, don't always think to ask for a blood test at their child's annual physical.  If blood-work had been done, Sammy would have been treated a little earlier and perhaps suffered less aggressive treatment.  Raising awareness, telling parents (and others) about such things may help reduce the number of children who are diagnosed late into their disease.  Adults are far more likely to be diagnosed early...go figure?

Sammy spoke at the Light the Night opening ceremony.  He will also talk at the LTN walk for the cure on November 5th...he is raising awareness and actively fighting for a cure.  Sammy is seven and still on treatment, but he has not let that stop him talk with the press and discuss his illness publicly if he feels it will benefit his cause.

Please consider supporting Sammy as he walks on November 5th.  You will be supporting thousands, perhaps more, as we raise funds for research to cure cancer and help prevent late-effects ravaging those already burdened with so much.

 Super Sammy Walks for a Cure!

Before Diagnosis

The First Year

Getting There

Lucky 13

Jack and Brian came with us to the clinic last Thursday.  It was quite the family affair.  The reason we all descended upon CHAM was due to the fact Sammy was scheduled to record his Oral History video and we wanted the whole family involved.  Of course, before we did that, we had to go through the usual visit palaver.  

Jack seemed fine with the whole thing...we were glad that it was a quiet day and there was not the usual bustling and sounds coming from the other beds.  (We have seen Sammy grow from screaming child to confident master of his domain, but there are always new children taking the journey and their cries and screams would have upset Jack a lot....I know, I have gone to the bathroom for a cry on past visits!)

Daisy was there taking Sammy's vitals as usual.  I had to leap at the chance to get a picture of her ready for Sammy's scrapbook.  I am trying to get as many doctors, curses etc. as I can before treatment is over. Not that we won't be back...we will every month, but I just want to capture the 'treatment time' right now.

Speaking of treatment, Dr. C gave us the final date for Sam.  He will get his last dose of Methotrexate on October 13th!!!!  13 really is our lucky number...we discovered the leukemia (just in time) on September 13th, 2009, and we end treatment exactly two years later.  I am soooo excited.  I have blown off the anxiety over it right now...I am sure it will come back, but right now I'm HAPPY!!!!!!

Dr. Jack!

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

The LAST Lumbar Puncture!

Thursday's clinic was a special day.  Although it was the beginning of week one, meaning steroids start again, there was a definite feeling of the beginning of the end of treatment.  We all knew that this was the case, but the occasion did not ht me until later into the day.  

As usual, we arrived at the clinic at 7am and Sammy went up to the fourth floor for his finger prick.  We were then seen pretty quickly by Megan and Dr. G.  All was well and we were sent straight back to be accessed....incase the blood would not come out immediately.  The counts came back showing everything as it should be....Sammy continues to have excellent blood counts.  Joyfully, the blood also came out first time, and Donna, the nurse, was able to administer the IV chemos really quickly.  We were all trying to make sure Sam was ready to go over to the Day Hospital as soon as he was called.  

Then we hear that the sedation team wasn't even in the building yet.  It was about nine o'clock and we were done with chemo.  Now we had to wait!  Thankfully, Sammy had Nana and I to keep him company, along with a couple of visitors:  Sammy was invited to be a star in his own video - a non-profit company explained that next week, Sammy and his family could record a half-hour video as an oral history for the family.  We spent some quality time together practicing questions we might ask each other for the video.  

Another visitor was Matt from The Hole in the Wall Camp.  He had obviously met Sam before and they got along wonderfully.  Here is Sam coloring a picture of Mr. Krabs from Spongebob.  Matt colored Ariel from The Little Mermaid....Sammy got a real kick out of that and was giggling and very happy.

It must have been very hard for Sammy as we did not go through to the Day Hospital until almost 11:30!  He was so hungry as he couldn't eat before anesthesia.  I was delighted, however, to see that Dr. S and Kim were the team on duty that day.  Dr. S is the head of the department...the one who saw us through radiation.

Kim came in to do the usual check-up and questions, but before anything else she announced that this was a BIG day for us.  I stared at her blankly for a moment before realizing she was referring to the fact this was the LAST LP.  Her happiness, hugs and congratulations awoke my comprehension of the enormity of the event!  LAST, LAST, LAST, LAST, LAST!!!!!!!!   Oh my goodness!  We were ENDING something that had been part of our lives for two years.  Dr. S gave us a similar greeting and then got down to his usual friendly business.

The LP went well.  Sam was scared once we went into the OR and needed a lot of comforting.  He needed enough sleepy medicine to knock out an elephant...he just wouldn't got to sleep!!!   Once he was finally out, Dr. S and Kim worked on keeping him safe while under, and Dr. L performed the procedure.  It all took about five minutes and then Sam was wheeled back into recovery.  

Already awake, Sam was quite entertaining as he saw three of Nana and I, thought my hand was all covered in warts, watched ships sailing on the curtains, and asked every few minutes, "Where are we?"  Keeping him horizontal was the biggest challenge!  Sam wanted to sit up and play his DS game.....how he was planning to do that with blurry eyes and wires attached to his arms and fingers, I will never know!  

So it is done!  We have reached a major milestone in treatment....we are on our way to the rest of our lives :)

Simple Pleasures

Things have been good lately.  I am on a high from knowing we are nearing the end of treatment (optimistic and refusing to worry about the 'what ifs').  Nana's recent visit was far too short.  Three weeks is a long time for a houseguest but we only get to see her once a year.  It is not enough.  However, we were able to enjoy a lovely time together.  

This is my favorite picture of our time in NYC, capturing the two boys hanging out by the lake in Central Park.  It sums up the entire visit: we were all too exhausted, sick or steroidy to do amazing adventures like we usually do, but we got to stop and SEE things....actually take time to soak in some easy-going pleasure!

Here the boys were watching turtles.  One turtle was very intent on getting food from them.  Utterly disappointed that there was non forthcoming, the turtle, who had crawled out of the lake to practically beg for the food, slunk back in very disgruntled.  I do believe the boys could have spent the entire afternoon there.  

It is good to see children enjoying nature and simple free pleasures.  All too often the cry for more time on the Wii or "Just one more TV show....PLEASE!!!" come flying in my direction.  On this day, however, we all just drank in the amazing views of NYC surrounding the lake as turtles, geese and boats provided us with all the entertainment we needed.