Wednesday, June 29, 2011


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!)

Tuesday, June 21, 2011

Principal for the Day

Each year a family donates money to the Danny Fund to fundraise and have their child be Principal of the Day.  This year an anonymous family donated in Sammy's name.  He became Principal Zweig last Friday. He looked so handsome all dressed up in his suit and tie and we cut his hair to smarten up the 'mad professor' look he had going (that is another story)!

Dr. R, the school Principal, welcomed Mr. Zweig and the two of them ran the school.  Sammy made announcements over the PA...the most popular one was "No homework tonight or Monday!"  Everyone, myself included, was very surprised at how articulate and confident Sammy sounded on the speaker.  He really sounded like a mature fifth grader.  He went on the rounds of the classrooms and stopped by my class to ask what the students were learning that day.

The representatives from the Danny Fund came in about 10:30 for the photo shoot.  Sammy took it all in his stride.  He shook hands and thanked people...I think he is a born leader....and posed very nicely for the camera.

By the end of the day, Sammy was tired...not so much from being Principal, but because of all the attention he was getting.  I think he loved every minute of it, however...he said the whole day only seemed like two hours :)

Thursday, June 16, 2011


The survival rate for children with leukemia has improved greatly.  This cancer, as with many others, still has not been eradicated and there has yet to be a full-on cure found.  As I have been posting my mad musings about Sammy's battle with leukemia, I have made some amazing friends, and learned about some truly wonderful children who bravely face things we cannot imagine having to endure.

Sadly, one of our little friends passed away.  He lived in Australia and his last wish was for a birthday celebration.  He chose, with parental/medical guidance, to stop treatment.  Colby had reached remission five times and still the cancer continued to rear its ugly head.  All routes were tried, but Colby wanted peace.  He is now resting, pain free, away from clinics and poisons.  The grandfather of another little warrior (Tianah - also Australian) wrote this poem to honor Colby. He gave me permission to share it:

The Angels came on golden wing,
To take our mate away.
They held him close to their breast
To give us time to pray.
"Come," they said our little one
"Come with us and rest."
"You have fought a battle brave,
It's time that you were blessed."
It's always hard to understand why children pass away.
But keep our mate always safe of this our God we pray.
Colby was a gentle soul
A delight to all who met.
A special kind of person who no one will forget.
Colby now looks down from above
Smiling on the ones he loves.

by Neil Berry

With love to you, Colby.  xxx

Neil just sent me his account of Colby's funeral which was today.  I cried so much reading it.  Colby will be remembered as a very special little boy.

Colby's funeral was at 2:00 pm today (Friday). As you can understand, it was a very emotional time.. I hope you don't mind if I describe it to you:... Colby's funeral was held at "The Star Of The Sea" church at Cleveland. (about 20 minutes from home). He was in a white casket. On top of the casket were the flowers, as well as a little football jersey from a local business, and a fire brigade hat from the local fire station. There was also a beautiful photo of Colby smiling. Two fire engines turned up, and three members of the fire brigade were also there in the congregation. A slide-show of little Colby was shown on a screen with background music. The slide-show documented Colby's life, in and out of hospital. It was beautiful to watch, but at times I had to look away... too emotional. Every photo, whether it was of Colby in hospital, or just doing the things he enjoyed, he had a beautiful smile on his face... After the slide-show, the three members of the firebrigade walked to the dais, to give their respects, and tell funny little stories about their time spent with Colby. (Colby loved turning on the siren and flashing lights of the fire truck when they used to drop around to visit him at home and take him for a ride. :-). After they had finished speaking, they presented his mum with a teddy bear dressed in a little fireman's outfit, as well as a proper fire hat, and a special engraved plaque making Colby an honorary fireman.... After the church service, a police escort of three motor cycles and two fire engines led the cortege to the "Great Southern Gardens Of Remembrance", where we were all given a yellow balloon to release into the sky. We then formed a guard of honour to farewell Colby. The wake was held at the Cleveland Sands Hotel, where stories about Colby were shared...

Wednesday, June 15, 2011

School Dance Festival

Last year the school held a big Super Sammy Day, turning the annual Dance Festival into a fundraiser for the Danny Fund.  This year we got to enjoy being a little more 'regular' as both Jack and Sam danced in their grade level dances and both were treated just like any other kid in the school.  We all loved that, not that we are ungrateful for the love and support showered upon us last year, but being normal is very dear to us all nowadays.

Of course, Sammy didn't so much dance as limp around.  But he enjoyed every minute of it, crazy thinning spiky hair and all!  Jack got a lot of attention from me as I was able to focus more on him and less on the media frenzy of last year.  I will post some more of his pictures on his blog.

As the end of the school year draws closer, activities galore are in store.  Sammy has already had his class below.  Jack has his Chocolate Fever party (After reading the book Chocolate Fever, the third graders have a grade level picnic with a chocolate theme.  They even get chocolate spots which can only be 'cured' by vanilla pills!)  Both boys have Field Day to enjoy.  Both are on the Gold Team....we will see how Sammy copes with the challenges of team sports, Jack will be his usual sporty, competitive self :)

We have the baseball picnic, the baseball banquet, and the Montefiore day at Playland to look forward to.  I will try to post pictures and mini-rundowns as we go. That is, IF I survive all this insanity!!!!!

Class Picnic

Sitting with friends

Picnic Beach Ball Fun!

Dance Festival

Dancing with Partner

Friends since Pre-aschool!

Jack being.....well, Jack!

Tuesday, June 14, 2011

Pennies For Patients

Recently the school Jack and Sam attend held a fundraiser for the Leukemia and Lymphoma Society called Pennies for Patients.  Basically, students hunt for loose change around their home...literally pennies, and bring them in.  Each child was sent home with a box and each classroom had a larger box to house the collected coins in.  The Student Government was in charge of collecting and counting up all the change.  Results have yet to come in, but the response was amazing and I am sure the children raised a great deal to help people with blood cancers.

Peter and Sammy were guest speakers at the assembly kicking off  Pennies for Patients, and Sammy had a blast being up in front of the school, helping to explain why we were asking for the pennies in the first place.

Saturday, June 11, 2011

Applause and Awards

Sammy had been asked, many months ago, to present the Danny Fund award at the Senior Awards Ceremony for the school district.  We had agreed, mainly because of all the support the Danny Fund has given us, and due to the fact that the community where the kids go to school has been so unbelievably supportive.  Little did we know that Peter (our hero) was to be the recipient.

Anyway, they awards ceremony was held on the evening of the early clinic day so we were not even sure that Sammy would make it.  When we got the call that Peter was receiving the award, Sammy became super determined to go, not matter what kind of infection he had.  So off we went.

The school gymnasium was set up so the parents were in the bleachers, the seniors getting wards were each side of the podium, and the presenters were at the back of the podium in several rows of chairs.  450 awards were scheduled to be given that night.  The Danny Fund were up after ten awards.

We had only learned that Peter was getting the award, a grant from the Danny Fund, that day so we were over the moon and emotional about it....Peter means a great deal to us.  We saw his mom and dad sitting in the audience, and I knew they had no idea about the honor about to be bestowed on their son.  What came next, I could not have dreamed of in a million years.

Our dear friend, Loretta from the Danny Fund, introduced the award and the fact that there was a special person giving it out, someone who was fighting leukemia and was demonstrating the ability to overcome unbelievable obstacles just like the recipient of the grant had done.  She called out Sammy Zweig to come up and present the award.  I braced myself for the emotion of Sammy calling out Peter's name but was dumbfounded when the entire sync and without any prompt... stood up for a resounding standing ovation for Sammy.  My Sammy!   My wonderful hero, Sammy!!!!!

I was crying my eyes out.  I later found out from Gina, Peter's mom, that a lot of the audience were crying too.  I had to laugh when, as all were standing except me...too busy blubbing and trying to take in the amazing spectacle before me, a very senior member of the community sitting behind me loudly commented, "Oh, that's the Sammy I've heard so much about....YOU had better stand for this guy..come on...stand up!!!!"   I dutifully stood and didn't feel it was worth turning and telling him I was Sammy's mum...I just 'got' what he was saying and it put me totally over the edge.....tears everywhere.

Sammy stood for at least a minute, taking the applause and smiling despite his fear, then announced the winner of the award.  What better person to receive it than the young man who had the same battle Sammy was having.  The young man who had overcome and defeated cancer, and was now Class President and Captain of the Football Team.  Peter, upon hearing his name, ran over to the podium, scooped up Sammy in his arms, and the two heroes hugged and shared a moment of triumph together!

Emotional overload!!!!

Wednesday, June 8, 2011

CHAM a Day Early

Sammy Playing Wii While Getting Chemo
This past week Sam had some interesting symptoms. They began with itching skin...just heat rash..probably.  Then he developed an itchy port site...not so heat rashy!  Then the peeing hurt and the testicles were stinging....not what a mom wants to hear.  Being me, I kept emailing Dr. C. to keep him in the loop and he felt we could wait until clinic on Thursday.

This morning Sam woke up with a canker sore, sore throat, pain in the 'you know what's', a blinding headache, and a very painful ear.  I took the day off work and went into CHAM to get it all looked at.  Poppa met me there incase I could get out and go back to work.  I do that on regular days when Sammy just gets chemo, but not when things are not as they should be.  So Poppa went home again as I dug in for the duration.

Sam's ear was red with water bubbles deep inside....ear infection - check!   No mass in his testicles so I began to breathe again as that may have meant cancer has developed there...common with boys and always checked on a regular basis.  Phew!  BUT, the pee and pain indicated a urinary tract infection, along with the wince of pain when Sam was examined on his back and belly - KIDNEY ISSUE!

As boys rarely get urinary tract infections (this is Sam's second), and due to the pain, Sam is going to get an ultrasound to check his kidneys....not for infection, but to see if they are damaged.  Please keep your fingers crossed that this is not the case....mommy sweats are not setting in yet...gotta keep the positive thoughts going on this one.

Counts came back and more mommy sweats could have occurred....his ANC was 12000+.....can anyone say relapse????   But, he has just had his steroid pulse and he has an infection...both cause elevated WBC and ANC so we are putting it down to that and NOTHING else!!!!  Other counts are fine so I know we don't have to go down that route at this point.

We have been sent home with ten days of antibiotics and the hope that we get the ultrasound pretty quickly.  Sammy feels a little better.

I also learned that Sam is in cycle 16 out of 24.  Due to a delay he had earlier on, he only has to get to cycle 23...that means we have seven more cycles to go and that's it!  First or second week of November should be the last chemo Sam gets....Yeah!  

Friday, June 3, 2011

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 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 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 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 :)


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