FLU

Well, Sammy is now back from the ER and is dosed up with Tamiflu.  His chest Xray and cultures are all clear so far and the swab showed flu despite him having the flu shot this year.  He's the only one in our family who has had it and he's the one with flu...bugger!  I am now about to give him his Mercaptopurine and Neurontin and settle him into bed for an early wake-up to get down to CHAM.  There he will get more antibiotics, chemo and the doctors will check him over themselves.  We are asking our friends if they can host New Year's Eve as we can't....awful to do this at the last minute to them...so sorry everyone.  I guess I was being over optimistic about how Sammy has been lately...but I find being positive helps us all stay sane.  Even now I am seeing this as Sammy having Flu...with some precautions thrown in as needed, rather than his cancer being the evil asshole ruining our lives.  Flu happens...I'll deal with it!

ER - I Spoke Too Soon!

Sammy looked exceedingly red in the face as I arrived home this afternoon.  I immediately took his temperature and it was 100.0.  We knew it was going to rise but waited as sometimes it actually goes back to normal.  Nope!  We hit 101.4 about twenty minutes later so it was a call to CHAM.  Luckily we are able to take him to the ER in Stamford.  We expect Sammy will be accessed, blood drawn and counts checked, then antibiotics will be administered and Sammy will come home again sometime tonight and revisit the ER for the next round of antibiotics in 24 hours.  Hopefully!

Brian has just called, they are being seen.  (Brian's turn for the ER.) He asked about the Flu shot and the type of port Sammy has (a port-a cath).  I now need to call him back to make sure he tells them Sammy has allergic reactions to the antibiotics.  Sometimes it's easier for me to just be there, not because Brian can't do it, but because I get all 'controlly' and call him every five minutes with orders...mothering instinct is my excuse. 

So tonight we will see what happens.  Hopefully nothing will be too serious and Sammy will be okay for New Year...his first remark after hearing he had a fever was, "What will happen if I miss the party?"  I told him we would still hold one once he was better....and we will!

Christmas Day 2010

Last year was awful.  Over a year on treatment and there is a huge difference in Sammy.  He is able to enjoy the festivities almost one hundred percent!  Now, I tend to have mixed feelings about Christmas.  It is my favorite holiday because of the magic my boys still experience, yet I dread the preparations needed in order for it all to fall into place.  I deem it to be totally worth the effort, however, when I hear literal squeals of delight on Christmas Eve as Sammy and Jack  make cookies for Santa and leave out carrots for the reindeer.  Cookies, carrots and chemo!  What fun.

We decided to indulge Jack this year as he has been so good with everything and has generally taken a back seat despite our best efforts to protect him from that.  Actually, I'd change that to a seat slightly to the side...we really have been trying to make things as fair as possible.  Anyway...Jack was the delighted recipient of a plasma TV for his room.  I am anti-bedroom TV, but we decided to go for one that had a built in DVD player and we won't be getting him cable.  The last thing I want is Jack disappearing into his room to watch TV all the time.  He happily understood our rules and has been amazingly open to asking us permission to watch it...Oh, I'm blessed!

Sammy got his favorite gift from Nana Haze; a HUGE Lego City set which will keep him busy for all of an hour...he really is very good at legos.  He also loves his new camera.  Check out these pics:

Not bad for a little fella huh?

Our Christmas was spent with Nana and Poppa and cousins, Lori, Karen, David, Noah and Aunt Bobbi.  It was great to spend time with them all and we had a lot of fun.  The kids played well with Noah, and we actually enjoyed a lot of 'grown-up' time without me having to hover over Sammy...wonderful for both my sanity and for the fact that Sammy could be left alone to play. 

Everyone was a good sport about my Christmas festivities..I am the only Christian amongst us all, and they happily sat with paper crowns on their heads, eating roast lamb and roasted veggies, as Christmas songs were droned out by the Rat Pack over the iPod all evening.  Mimosas, wine and beer flowed as the humor digressed to jolly festive silliness.  I was a happy bunny, enjoying family and fun, without once thinking about leukemia...a Christmas miracle was that I actually remembered to administer the meds on time....but then again, we never forget those....so I guess it is in the back of our minds all the time.

Our Inspiration and Hero

People often ask me how I am so strong.  I am not strong, I do not have a choice.  I do, however, have an amazing group of people who love us and care for us and get us through the tough time.  One such person is Peter...often mentioned in this blog.  He is Sammy's rock...our rock...and through his amazing grace and strength, we see what can be in our Sammy's future.  If Sammy turns out to be even half the man Peter has become, we will be very happy indeed.  Below is an article that appeared in the Pelham Weekly and on the following website http://www.highschoolsports.net/local/westchester/article/20109240328  I have 'borowed' it to highlight why we love and respect this young man so much.  He is, in every sense, a hero and role model to all.

Fri Sep 24, 2010 12:00 AM



Pelham's Manos an inspiration to others


Josh Thomson jthomson@lohud.com


PELHAM -- Standing like stone before practice Tuesday, Pete Manos looked like the living, breathing embodiment of a healthy teenager. At 6-foot-2 and 215 pounds, he strikes a figure that is more lumberjack than workout warrior, like the chisel chose to carve his jaw rather than his biceps.
Pelham's Pete Manos is a warrior both on and off the football field.


Since last December, when the Pelham football team began offseason workouts, Manos' teammates followed his lead, and not just because he is bigger or stronger than them, although that is true. They followed him because they believe in the example set by the two-way starting lineman who has overcome more than 300-pound defensive tackles to get where he is today.


"He has worked so hard that everyone can't help but listen to what he has to say," coach Dave Moskowitz said.
Five years ago this fall, the Pelham senior began a fight against leukemia that dragged him through two years of intravenous and oral chemotherapy and the dark times that accompanied it. Not only has Manos recovered and blossomed into an ever-improving football standout, he even spends his free time fighting the cause that threatened to take his life.


"I work as hard as I possibly can for as long as I possibly can," Manos said as his team prepared for tonight's game against fellow unbeaten Our Lady of Lourdes. "I know tomorrow may not be there. I know that in a day it could all be gone."



That fear raced through his mind and those of his family members the summer before seventh grade. A lump in Manos' neck swelled almost overnight. Doctors eventually discovered he had acute leukemia, a common form of aggressive but treatable cancer found in children.
Manos, just 12 at the time, spent much of the next year at home. Community support included each of his seventh-grade teachers visiting him on free afternoons.
Working together with them, Manos stayed on the honor roll, but life wasn't easy. His mother, Gina, became determined to find the best nutrition and supplements to maintain her son's strength. She spent hours on alternative methods, hoping if her son could envision himself as a powerful warrior he would become one again.


Still, "at the end of the first year, he was beat up," Gina said. "He was very weak."
Manos improved. He returned to school full-time the following year and finally finished with chemo completely in September of 2007.
As a freshman, he played basketball and baseball but had to wait until a port was removed from his chest to return to football. That came the following year, when Moskowitz added him to the varsity during camp.
The transition after four years away from the game was slow, but Manos become a starter at right tackle last year. Now, he plays left tackle and defensive end while also serving as a captain and, at school, as class president.
"He's a dominant player for us," Moskowitz said, "and still just scratching the surface."
Recovering from leukemia presented Manos with more than just a physical challenge. Beginning in 2006, his family grew deeply involved with fundraising and providing education to fight the cause.


Manos works as a volunteer with the Westchester/Hudson Valley Chapter of the Leukemia & Lymphoma Society. He shares his story at school assemblies and talks to children who are confronting the disease for the first time. That includes Sammy Zweig, a Prospect Hill Elementary School student from Pelham who was diagnosed last year.
"It's been great to have him," said Barbara Gallagher, the campaign director for the local chapter. "When the kids hear it from a survivor, especially someone like him, it really hits home."
The Manos family formed a team, called (intentionally) "The Warriors," for the annual "Light the Night" walk at Rye Playland. They have drawn more than 200 people to the fundraising event, including the entire Pelham football team.
That type of support has made the family one of the Leukemia & Lymphoma Society's biggest fundraisers in the country, raising almost $300,000 since 2006. Manos' dad, Peter, has also helped sponsor the event with his business, JDP Mechanical, Inc.
So whether it's fall nights on a football field or at Playland where he is surrounded by friends and fellow survivors, Manos is an inspiration to others. He defeated leukemia, a battle he'll never forget.
"I never wanted him to feel like a victim and he absolutely doesn't," Gina said. "He's going to take this and be a guide for others."

Thank you Peter! xxx

Hanukkah

Being pretty much mutts as far as the religious aspect of life goes, our family embraces both sides of the
Holiday Celebrations'.  We were off to New Jersey for the annual 'better late than never' Hanukka gathering of cousins and in laws.  The boys love it and for the first time, actually got to know what the story was all about through a fabulous musical number by the Maccabeats:
http://www.youtube.com/watch?v=qSJCSR4MuhU

Break dancing!

Taking careful note of the TV!  never mind all the presents behind them :)




Lazar Tag...just what Mummy wanted - not!




A with his cheeky chocolate smile



Everyone smile and look at the camera - try #1



Everyone smile and look at the camera - try #100

 We all had a great time together and connected only as cousins do when they see each other for important events...just like they were together all the time!  Aren't family amazing?  Good bonds can do that and having that connectedness is so special.

Date Night

Sammy is on steroids again.  I think we notice it all so much more because the rest of the time is relatively okay, but steroid week is so hard on him.  Each time it hits, we still get a little shell shocked; I think we always will.  We have about 12 more to go...not bad considering...but I still don't want to wish for next October to arrive too quickly as we want to savour every day of the boys' childhood - the good and the bad.

We had plans to see the new Tron movie today.  Sammy was not feeling up to it, however, so evening came and Jack went with Brian and his friend to see the movie.  Sammy was content to miss it rather than struggle through feeling rough, but we promised we would take him next week when he felt better.  Sammy had the inevitable munchies that go along with the steroids.  He is known to have pizza bagels for breakfast and very strange swings with food cravings.  He suddenly started to beg me to take him to the 'Red Diner' for dinner.  I agreed, no problem with going, just wanted to make sure he really would eat the food.  I could see the inner turmoil he was going through about the food decision.  He is a very mature young man in some ways and I could tell he was unsure about being able to eat at the diner.  Steroid rush kicked in and I could see him getting even more upset.  He was so confused about what "his body would let him eat"!  I suggested he think of other places we could go on a 'date'.  Suddenly his eyes lit up...the Japanese place!  There was no denying I could tell that was the place he wanted, no question about it in his mind or body.  I agreed...who could deny such a request? 

Historically, eating out on steroids leads to melt-downs and angst. We leave quickly and food is barely touched.    Sammy was initially very jumpy about the fact we had to walk past the tables to get tot the hostess station.  He was almost in tears that we were not going to sit in the regular section - steroids!  Then, the mood changed direction out of nowhere.  As we sat down, Sammy immediately engaged in hilarious banter about the restaurant and his need to have 1. chopsticks, 2. soda, 3. a spoon, and 4. water.  He was incredibly polite with the waitresses and actually began to 'hold court' as the meal began.  Every typically cheesy joke the chef at the Hibachi table usually makes; "Japanese ketchup", "Japanese egg roll", etc. was made by Sammy, beating the chef to the punchline every time.  Then Sammy created an entire story out of the fried rice being cooked in front of us.  The people sharing our table were in stitches with laughter. 

The merry conversation continued, the polite requests made of the chef and waitresses continued, there was no sign of the steroids at all...oh, except for the fact Sam managed to consume both his and my soup, fried rice, and shrimp appetizer, as well as his own meal! 

We were on a fun Mummy-Sammy date and all was so good.  I enjoyed Sam's company and I think he enjoyed mine too.  He thanked me for the date and said it was so fun, we should think of where we were going to go next time.  He didn't pick up the bill...but I can forgive that, I'm a modern kinda gal!    The meal ended just in time for a new wave of steroid angst to kick in...but at least we had a marvelous time together before rolling home, administering the next dose of steroids and chemo, and snuggling up together in Sam's bed until he fell asleep, something he needs during his first week of the cycle. 

Now, Sammy is sleeping, the odd sigh coming from him as he rests, his beautiful eyes closed and his blond hair lying wild on the pillow.  Tomorrow we face more irritability, confusion over food and general crankiness, but tonight was a fun date night...thanks Sammy :),

The Danny Fund

http://thedannyfund.org/

Today Brian called at a friend's house to pick up gift for the boys and a gift card from The Danny Fund to the boys (and us) to celebrate 'guilt free' over the holidays.  We are not to use it for copays or bills.  It is such a wonderful gesture!  My favorite gift, however, was the news that the money that was raised at the Super Sammy Dance Festival Day...previously mentioned - orange T-shirts everywhere...TV interviews...donations from the kids etc. was being used to help three families in need. 

I cannot express how good it felt to be helping someone else.  Knowing that we are not just 'taking' from others, but also contributing again.  It is especially important that it is through the Danny Fund as they really help keep people afloat when health issues threaten to rip family finances apart.  We could not have stayed financially afloat without their help. 

Now, am I glad for the wrong reasons, I ask myself?  Do I dislike my inability to cope on my own so much, I jump at the chance to help others to make myself feel better?  Looking inward, really going deep inside myself, I think I do feel a sense of relief we are able to be 'helpers' rather than 'takers'.  Does that make me a bad person?  Not sure...but this is my reflection:  when one goes through more than one can usually cope with, it is a necessary survival strategy to welcome the aid and generosity of others.  My dear friend, Gina, who has been through this herself, told me in the very early days, "Take all the help you can get and give back later. People genuinely want to help you."   I have never taken this help and love for granted, but,boy, it sure feels better to be on the giving side again. 

So, to psycho-analyze myself a little further...I don't think I'm a bad person, just a relieved mother.  We are at a different stage and can be more aware of others again.  I am seeing HUGE lists of people to thank....all of whom I intended to immediately and then got sidetracked by yet another bad phase or reaction to meds.  I have not got that excuse any more.  I am free to be me again to a much greater extent.

Therefore, I am now a "helper with a need for some help".  I am a "friend who needs her good friends also"....I am a mother of a very sick child who is coming through the other side of Hell and can understand what it is like to be there...I can help...I can empathize...I can DO something for others...I can be ME!  Thank you, Danny Fund, for giving me the gift of feeling like ME again.

Sammy's Make A Wish Part One

When Sammy was first diagnosed, he was visited by the Make a Wish Foundation who wanted to treat him to a special wish.  The organization is a non-for-profit charity which tries to fulfil the wishes of children with life-threatening illnesses.  Sammy wanted to meet Tiger Woods; golf being his sport of preference.  Well, the scandal had just got out and we knew Sammy was the wrong blonde!  We subtly suggested other options.  In the end, after a meeting between the Make a Wish volunteers and Sammy, a trip to Disney was decided upon....we had no input...it was all about Sammy's wishes.

I was very nervous about the whole thing. After all, Sammy was at a very critical stage in his treatment and wasn't able to wash his own face, never mind ride roller coasters and cuddle with Mickey Mouse!  But we knew we would not be granted the wish unless we had the okay from his doctors and it wasn't going to be scheduled until the summer...when Sammy should have reached Maintenance...which we now know, he did!

August came and a limo pulled up to take us to the airport! The boys were so happy and excited.


 

We were greeted in Orlando by a Give Kids the World rep who was so helpful and showed us how to do everything, including getting the hire care organized.  We were treated  like royalty.  Then, after a short drive, we arrived at the village created by a Holocaust survivor who wanted to make sure no child lost their childhood like he did in the concentration camps.  Their blurb:

Laughter fills the air at Give Kids The World Village, a fanciful, carefree retreat for children with life-threatening illnesses, and their families. Give Kids The World Village is a 70-acre, nonprofit “storybook” resort located near Disney and Universal Studios. Here, children and their families are treated to week long, cost-free fantasy vacations, complete with accommodations in whimsical villas,transportation, donated attraction tickets, meals, and much more. At the Village, these children learn that dreams really do come true as they and their families are immersed in joy, love, and hope for a few unforgettably happy days. Since 1986, Give Kids The World has hosted more than 100,000 families from all 50 states and 72 countries.

http://www.gktw.org/aboutUs.asp?a=1

This vacation was really a blessing for us.  We loved the Candy Land villa and the fact that Disney characters visited us at the village so Sammy got to see them without the crazy lines at the theme parks.  There was an "All You Can Eat" ice cream shop open all day and night.  We went once, but became so busy with everything else, we actually didn't go again so didn't gain 1000 pounds from eating there everyday...phew!  There was a carousel ride, a movie theatre, a train station with ride, a pool with a pirate ship, a horse corral and a mini golf course with interactive dinosaurs...so much fun and we weren't even at Disney yet! 

Each morning we had breakfast at the Gingerbread House with volunteers carrying our trays and hundreds of dolls and cuddly toys upon shelves high above our heads. We then did an activity at the village such as swimming in the pool, or the carousel or the Dino Putt or the Amberville Train Station, or the Castle of Miracles.  Then we'd head out to one of the theme parks for the day.  So much was done at the village that we missed, as we generally got back too late...such is the life of a thrill loving, roller-coaster riding, cancer-fighting hero like Sammy! 

Each evening, after a hard day of play, we would arrive back at the villa to surprises for the boys.  They had games, candy and other fun stuff waiting for them as a magical 'extra' to their stay.  Brian and I had the magical extra of no stress, no day to day hassle, and such a sense of being together having fun...I cannot express how much this time meant to me. 

More miracles will follow in part two :)

LP Issues

I have been meaning to update and have even got a few entries in the editing stages about fun things such as going to Disney, LTN walk and Halloween.  However, I feel a vent coming on as my Mommy Signal is flashing like crazy due to things not going as well as usual.  Sammy had another LP the day before Thanksgiving and it did not go as well as they usually do.

To be honest, the actual procedure was event free.  We had the usual problem of Sammy's blood not coming back with the differential (the bit that tells the doctors what his ANC is - if his blood counts are high enough for him to have the chemo safely).  We have been working on this issue for months and yet, even with doctors calling and emailing the lab, nothing has changed...Sammy's blood always has to be done by hand rather than the machine....baffling everyone! 

Sammy needed a LOT of sleep medicine this time...he kept looking asleep and then waking up and panicking in case I wasn't there.  He doesn't remember this, so I know he was heavily under the influence, but it was disconcerting to say the least.  Finally he looked almost gone and I was ushered out so they could begin.  The procedure took all of 12 minutes and then Sammy slept for about an hour afterwards which meant he finally lay down for the full time needed to avoid getting headaches etc.   Things were looking good. 

The next day was Thanksgiving and we had a wonderful day at Nana and Poppa's house with family.  Sammy seemed to do really well and played with his brother and cousins as normally as any other kid.  He was tired by the end of the long day, but who wasn't?  Admittedly, Dr. Gill had given us the okay to hold off on his steroids and chemo until Friday so he could enjoy the holiday with family.

Thursday night the pain started.  I was up most of the night with Sammy feeling strange and uncomfortable...like he was on steroids but he wasn't.  Friday, he did start chemo and steroids and the pain and sickness progressively got worse.  We called CHAM and Dr. Levy told us this was fairly normal after an LP and the steroids exacerbate it.  We must have been lucky not to have had it so bad before.  We were to treat with Codine for pain and call if things got worse. 

Although Sammy certainly played with Jack and even had a play fight with Daddy, his ups and downs have been very dramatic and overall the pain day and night have been awful.    Today we are watching closely and will call CHAM to see if we need to bring Sammy there in the morning.  We think we will be told to wait it out and that it is just par for the course.  I guess we have been very lucky recently...this was our standard day just a few months ago, now I am freaking out and feeling major panic...not that I didn't back then either, but I just got used to not panicking so much. 

The worst has been the waiting for results from the LP due to the holidays and the recurring dreams of loosing Sam.  I know my mind is both extremely fatigued from lack of sleep over the last 3 weeks (Brian had surgery so I've been the one doing all day and night duty), but also because I am anxious and probably over-thinking everything.  We have had a very good run over the last couple of months, and my biggest fear is it all crumbling around us.

Almost Time to Walk for a Great Cause

Sammy and E at Montefiore Hospital

On November 6th, two things will happen.  The first is my turning 40!  I am not used to that idea and find it a little hard to accept that I'm leaving my thirties.  The second is a major event for our family:  the Leukemia and Lymphoma Society's annual Light the Night (LTN) walk.  In the Zweig household, November 6th is henceforth known as SuperSammy day, rather than my birthday, as we will be walking in our orange shirts to raise money for children just like Sammy. 

Peter, our dear friend, will be walking also with his team, The Warriors.  Together we hope to make an impressive display of red Warrior shirts and orange SuperSammy shirts as we walk and have fun at this event.  Sammy has invited his clinic team of doctors and nurses, all the students in his class, Jack's class, the fourth grade and the fifth grade.  We also have Sammy's preschool, Little Friends, fundraising and joining us in our walk.  Friends and family will be there...huge support.  This walk is special:  Sammy will NOT spend it in the hospital this year (I hope), and he sees it as a huge celebration of how far he has come...he can do something for someone else now. 

Jimmy Locust, my dance teacher and a professional dancer and master teacher, will be at the walk with his dancers (not my group), to dance on stage in support of LTN.  We are all rallying to support all our friends who are fighting cancer. 

We will walk to honor Sammy and Peter, of course, but also many others who have become such a huge part of our lives:  Giovanni, Sammy's friend who has a similar leukemia; E, who is Sammy's age and is at the same point in his treatment of leukemia as Sam.  J, who we shared a room with and has undergone surgery on his leg to remove a tumor and is continuing the fight; K, who has so many infections due to treatment, she is constantly sick; M, who arrives at the clinic with his grandmother each week and is making wonderful progress despite the gruelling protocol he is on.  Then there is M, an adult...a firefighter...who we met at the beginning and was done with treatment, until the tumors came back and he is now starting treatment all over again!  J, who passed away a few weeks ago; his fight is done, his life will always be remembered and celebrated.  He fought for three and a half years and decided it was time to let go. There are so many more wonderful children I have met over the past year who are fighting to live and become strong again.  We are walking for them, to help find a cure! 

Please join us as we walk:

Saturday, November 6, 2010
Rye Playland, NY
5:30-8pm
Fun, food and fireworks!  Join Sammy's team or just mingle and enjoy!  SuperSammy t.shirts will be handed out to our supporters.

Donations can be made directly to the LLS at the walk or in Sammy's honor at the link below. 
http://pages.lightthenight.org/wch/Wstchstr10/KZweig

Light the Night

http://pages.lightthenight.org/wch/Wstchstr10/KZweig

Please consider donating to our team walk for the Leukemia and Lymphoma society.  Sammy is doing well but we need research to continue to help children with cancer fight and survive without the devastating side effects of the treatment.  Please help us save lives.  Even the smallest donation helps.

Much love and thanks,
Katy

It's Been a While

http://www.pelhamweekly.com/atf.php?sid=11024&current_edition=2010-06-25

Wow! It is already September and I haven't posted for quite a while.  The last time was when Sam had an infection and we were back on antibiotics and hospital watch.  Well, so much has happened since then, but most of it has been good....so good, in fact, I haven't had time to blog!!!!!

While Sammy was in the hospital getting treatment for the infection, the amazing community of the Pelham School District (where we teach and the boys go to school) galvanized for a major fundraising to help us.  Hundreds of Superman Sammy T. shirts were sold across the district, designed by our art teacher, Devon.  Each school raised funds this way and then Pelham was, for about a week, a sea of orange "Sammy" shirts.  Our own school Prospect Hill, has an annual dance festival led by the music teacher Eric.  This year, Eric allowed the festival to be a time when all Prospect children wore the Sammy shirts as they danced.  Many parents were also sporting the orange attire and many shirts were sold on the day itself.  All the money went to the Danny Fund, a fund to help families with all the costs associated with serious illnesses.  This money has been earmarked for Sammy, a huge financial help to us! 

I can honestly say, a movie could have been made of the day.  Sammy was in hospital for this momentous occasion, and CBS News and News 12 had got wind of the event and were coming down to film it and interview Sam!!!  The organizers of the fundraising, my dear friends Karen, Adele, Kate and Deirdre had created an amazing celebration, the dances were ready, the cameras were set to roll, the Manos Family were there for support, the Danny Fund attended to both heighten awareness of the fund and support Sammy, but....no Sammy. 

Now, Brian and I are not people who would EVER put our child at risk, but we knew Sammy was only in hospital due to the need to give the antibiotics, so we asked that he be given a day release to attend the festival.  We had nurses calling favors in from Dr. Cole, we had Jeremy, the CHAM 9 doctor work his magic, and about half an hour later than the scheduled start of the dance festival, Sammy arrived with Poppa, Nana and Lulu.  He changed out of his PJ's in the car (remember he had just come straight from the hospital).  Then Peter, almost 5 years clear of leukemia himself, took the hands of both Sammy and Jack and the three walked along the pavement to the front of the audience to cheers and applauding (and some tears) of the entire school community. 

Sammy, Peter, myself and several others were interviewed for CBS news and Sammy had a special seat to watch all the wonderful dances performed by each grade. Jack was amazing doing his second grade dance...so cute!   Deborah K was the official photographer and I will add some of her beautiful pictures of the event once I get round to letting her know which ones I want.  Sammy, himself was so articulate and confident when speaking with Cindy Hsu, the reporter, and impressed everyone with his strength and openness about having cancer.  The neuropathy pain only kicked in at the end of the festival and only a few people  in the office heard the sreams of pain from my little superhero. 

At the end of the day, Sammy left for the hospital once more, his day pass expired, but his spirits truly lifted...his recovery actually sped up after this.  Sammy had been presented with special oversized checks from the fundraiser, made out to the Danny Fund and one made out to him from some very special fifth grade girls who had held a lemonade and cookie sale in the colder weather and raised a very substantial amount for us.  In addition, the company who printed the shirts, and who donated a percentage of the profits to the Danny Fund, also presented Sam with his own special Super Sammy logoed sweatshirt!  To top it off, Sammy's orange shirt had a special addition to the back of it: "Sammy SuperSpongebob Star".

Superman Sammy was featured on CBS over several days.  The nurses, doctors and staff at Montefiore were clamoring for the shirts (we gave those away to thank them for all they do), and apparently, the nurses on CHAM 9 all had a SuperSammy shirt day and everyone wore them just as an emergency drill was carried out....orange Sammy shirts flying around the hospital must have been quite a sight to see :) 

People all over Pelham were spotted in orange, and I was even stopped in Eastchester and asked if I went to Pelham schools...I was wearing the Sammy shirt and it was recognised!  I told them I was Sammy's mom and they were so happy to have seen how well he was doing on T.V. 

So this is the first of many great things I need to share lately.  As I said before, it is already September, Sammy is actually having a very bad steroid day today, but maintenance is so much better than the other stages of treatment.  I will try to cover the past couple of months as they have been so great. I will say, my Sammy has started to grown his hair...eyebrows and all!  He is more mobile most days, and he regularly fights with Jack!  Sammy is back :) 

The Pelham Weekly Article:

Prospect Hill School’s annual dance festival and party on June 16 was dedicated to sixyear- old kindergartner Sammy Zweig, who was diagnosed with leukemia nine months ago. Walking slowly across the school playground, he waved like a royal prince to a sea of cheering Prospect Hill students, all wearing orange “Super Sammy” T-shirts. Students at other elementary schools in Pelham wore similar T-shirts that day.



“We are beyond humbled by the support we have had from our Pelham family,” said Sammy’s mother, Catherine Zweig, who like her husband Brian has been a teacher at Prospect Hill for more than ten years.



Among the supporters was a former Prospect Hill student, 17-year-old Peter Manos, who is in his fifth year of remission from the same type of leukemia Sammy has. “Peter has been the mentor, the support guy, the one who is there when Sammy won’t take his medicine,” said Karen Cirillo, one of a group of Prospect Hill teachers organizing support and fund-raising efforts for the Zweigs. The other teachers working on fundraisers were Deirdre Stein, Adele Reynolds and Kate Alix. Mrs. Cirillo said the sale of “Super Sammy” T-shirts and bracelets raised more than $15,000 for the Danny Fund, a local charity that will use the money to help Sammy and his family. In addition, Ink It Up, a Larchmont custom screening and embroidery company that produced the T-shirts, donated five percent of its profits to the Danny Fund. Also contributing to the Zweigs were a group of fifth grade girls who presented them with $1,200 from bake sales.

Around the community, support also came from teachers Joshua Stein and Dan Friel at Pelham Middle School, Ginamarie Ruffolo and Melissa Magiet at Hutchinson, Tonya Wilson at Colonial, and Linda Carlson, Alyssha Miro, and school nurse Joan Walder at Siwanoy.
Mrs. Zweig thanked the students in the Prospect Hill fifth grade she taught this year.

“They have a magic,” she said, “that kept me sane.”

Note: The Danny Fund will host its 2010 fundraiser on Oct. 2 to raise funds for the Zweig family as well as other current Danny Fund families.



—Bob Payne

Update

I just received a call from Stamford ER to say the culture grew bacteria...Gram-Positive Cocci to be precise or Staph to you and me.  I am surprised as this is usually a complication that occurs when children are neutropenic, and Sam has counts of 5000!!! He is technically fitter than me!  So, we have to make sure he stays safe and well...no Kindergarten Gala after all.  Bump bump bump!

Stamford ER

Last night I lay in bed listening to strange gurgling and realized it was Sammy throwing up.  He has been so congested lately, and it has led to a couple of throw-ups and many night s of coughing.  But last night a fever decided to join in the fun too!  Sooooo....we did the fever dance and called CHAM.  Luckily, Dr. Gill was on call and he said, as Sam was not likely to be neutropenic, we could take him to Stamford ER and have them call him.  We were so glad not to have to hike down to the Bronx.

I took Sam and we were ushered into triage fairly quickly.  It was quiet...so different from the bustling CHAM ER, and then led into the room.  It was THE room!  The room where it all began, back on September 13th!!!  The room where I learned my lovely Sam had cancer and that our lives would be a series of crazy rides like the one we were having that night.  I shuddered, and then got on with it...what else could I do? 

The doctors and nurses were attentive and very friendly.  We everything was done in a very timely manner and even the admitting lady brought me coffee!  Sam was the superstar, however, when it came time to access him.  There were no pediatric needles so he was going to have to have the one inch needle pushed into his chest (into the port really), and I was very concerned it would cause him to loose it.  I could not have been more wrong.  Sam was as cool as a cucumber, told the nurse just to do it and get it over with, and didn't even flinch as I saw her push down hard to break the skin.  WOW!  He was AMAZING :)  I have to say, Sam really showed the staff at Stamford how far he had come...I also think their calmness helped.  CHAM can be very frenetic and he already knows how much it can hurt there.  The nurse also had a great trick for getting the blood; Sam often clots and won't relinquish his precious blood without hours of trying.  A good cough throughout the drawing was all it needed. 

We had a long night, just by the nature of what was needed, yet it was by far the easiest ER visit.  We had X-rays done to check for chest fluid..all clear.  We had an allergic reaction to the antibiotics so Benadryl was needed, and we had another gagging on the phlegm episode, so the doctor put Sam on a nebulyzer with sterile water to unclog him a bit.  We were well looked after. 

Now Sam is asleep on the couch and I am trying to get the energy up to pack some more boxes for our move.  It is strange how accustom we become to things, and also how being in THAT room in the ER was not as bad as I thought it would be.  yes, we were back in the ER for yet another fever; and yes, we still have a long way to go; but sometimes the bumps are not as big as they used to be and that is good! 

Thursday Sam starts day one of his next cycle...always rough....but it is also the beginning of Maintenance....I wonder if it will really get easier, or will we just be more able to cope like last night? 

Downs and Ups

For the past month things have been less than easy.  Sammy's physical abilities have been under close scrutiny: neurontin for neuropathy...not really helping movement but maybe taking away some of the pain, weekly check-ins by the CHAM doctors to see how his walk is doing...progressively getting worse! and finally, being scheduled for OT and PT at Greenwich Hospital with D.J and Heather.  Finally...something that indicates the possibility of progress.

In addition to our worries about walking and the 'claw-like' positioning of his hands, Sammy has also begun evaluations through Stamford Schools.  Hart school has scheduled a series of evaluations, cognitive, physical and emotional, so as to develop a special educational plan for him.  We cannot get this through the school district he attends (where we work) as he is not a resident of the town...but they will provide the services once Stamford has evaluated him for needs, and agrees to cover the cost. 

A major issue right now is the question of whether or not Sammy will stay in Kindergarten next year.  his academic ability indicates that he is ready for first grade, but his lack of stamina in the classroom could mean more missed school next year and thus, missed first grade instruction which is crucial to future academic development.  What makes the decision so hard is that we have no idea how Sammy will respond to the maintenance phase of treatment: he may become much more able to take part in all classroom activities and receive all instruction, but he may not.

But...the great news is that Sam is almost at the point of beginning Maintenance!!!!  He is done with the agonizing asparaginase shots and should be on slightly reduced steroids for each cycle.  He will have to be accessed every week from now on  (until at least Oct 2011) for his weekly methotrexate dose and will have LP's every 18 weeks.  The usual daily meds will continue and the mercaptapurine has actually been increased again as his counts remained too high over the last few weeks.  The aim of maintenance is to fully blast away all remaining leukemia cells which remain undetected in the body.  It lasts 70 weeks and is generally considered to be the easiest part of treatment.  Some children remain very agitated by the steroids and the vincristine can still cause pain and neuropathy, but in general, many children start to feel more like their old selves. 

Sammy has been though the toughest of all week ones this last cycle..he was in so much pain, felt so unable to move, and was emotional distraught, even telling me he wanted to just give up and let the cancer win!  My heart broke a million times that week.  He was not my Sammy and he knew he was not the old Sammy he wanted to be.  My son grew up and gained such astute maturity about himself, his body and his situation, I was proud and yet longed for the innocence of children who feel no hardship. (I know so many do). 

But things got better more quickly than normal too.  Before the first week was over, he was chatting and happy, moving with his 'old-man' gait, and has actually been to school for several days.  He loves going to OT and PT, especially today...he got to exercise in the pool :)   Sam sleeps though at least half of the school day, but he is also able to be part of the class again and sometimes plays outside, Brian or I acting as his aid so he is safe. 

Today, life is good.  We are moving towards  the chance of an easier phase, and hoping to have a summer with less fevers, pain and emotional stresses.  Fingers crossed!!!!

Birthday Boy!

Sammy was walking fairly well and was in high spirits before his birthday.  He had actually built the whole thing up so much, it could not possibly meet his expectations.  Sure enough, as the first guest arrived at My Three Sons in Norwalk, Sammy fell in the soft play area and was in a lot of pain for about twenty minutes.  Finally he calmed down and enjoyed most of the other activities while held by Daddy...he had lost his walk yet again! 

Overall Sammy did well.  He had high counts and could relax and enjoy, just not walk.  He loved the family party the following day with his cousin Andrew.  He even won the Spongebob pinyata...yippeee!

So now my little boy is six.  I am getting further away from the cutie who climbed up me and spent ages just being in my arms as I walked around the house.  I miss snuggling into his hair as we did that, my pleasure coming from the feel and smell of his blong locks and marvelling at the length of his lashes....not fair how boys get better ones than girls.  Sammy has missed most of his Kindergarten year and I have missed my Sammy.  We are getting more glimpes of him again but I am always waiting for the crash.  Meanwhile, here are some pictures of the big day...or should I say weekend). 

Problems!

Well, Dr. Cole recalculated the Doxorubicin and Sammy was officially taken off having completed all the doses.  He started the methotrexate via his port once a week and had to begin twice weekly visits until the asparaginase shots are complete...they can't be given the same day.  Having spent most of March in the hospital; admitted twice, we were very glad to hear that things should become easier now.

Well, it has not!  Sam has now become an invalid, unable to walk without help and then only for a few steps without being exhausted and in pain.  This development happened after a fall over a weekend in April, but I think it was already developing due to the vincristine taking its cumulative toll.  So, after Sam fell, he was taken to the local doctor who sent him to the osteopath to get an xray.  There was a slight shadow on one of the xrays so Sam was put in a brace.  He was unable to move or walk.  By Wednesday afternoon, he was looking very strange and hot, so I took his temperature as soon as I got home from work.  It was 102.6!!!!!!   We still waited to see if it would go down...it didn't..until we reached the ER.  Yep, we were back at Montefiore, doing the ER dance again.  (Brian had taken Sammy to the ER only a week before for a fever Spike but his ANC was high enough to come home by about 11:30 - we hoped it would be the same again.) 

Sammy was accessed and the nurses tried to take blood...no luck.  I explained that it had happened a week earlier too and only a special anti-clotting drug would help.  That had to then be ordered and administered and then we had to wait for it to work.  Meanwhile we were taken to xray to check out the leg. We got back to the ER from xray by about 1am.  Sammy was exhausted and I was feeling it too.  I was a little wired, however, as the technician had called me into the room to check Sam's pockets for objects as something had shown up on the xray.  The tech and the doctor did not know what it was....we had to wait for the specialist to read the xrays.  I was so worried...Sammy's original xray had shown the huge mass of cells in his chest...had it come back?  This was to be an unanswered question into the next day.  Sam and I were still in the ER by early morning and they then sent us to the clinic to have the HemOnc doctors look at him.  I was cross eyed by then.  Thankfully Sammy had slept a little. 

Sam had his chemo in the clinic and we waited for the results of the xray.  Nothing!  He was then sent home, returning the next day as his blood was low and a transfusion was imminent.  Instead, Brian, who had taken Sam in, called me to say the specialist had seen the mass, checked the bones, and said they were fine but the muscles had atrophied.  The mass remained a mystery but it wasn't cancer.  Finally, Dr. Moody burst in to look at the films and burst out laughing.....it was Sam's penis!!!!!!!!!  Phew!

Easter

Unwrapping Easter baskets from the girls at St. Catherine's Academy

ANC Zero!

Sunday, last week, was an ordinary day.  We had been enjoying the fact that Sam had been taken off the chemo due to low platelets, but had an ANC of 1200 on Thursday.  He was 'high' and able to do regular things.  We had gone to Casey's (a local restaurant) with a group of friends, stayed up late watching movies and eating take-out, and had welcomed kids into the house once more.  Then, as I put Sam to bed and took his temperature, he showed 100.3!

Now 100.4 is the magic number, so I decided to wait. Aafter all, his ANC was high.  Sam had been in great pain with his lower back earlier that day and we had called CHAM and given Tylenol/Codeine.  But 100.3 was below the "call or else" number so I waited.  About an hour later, I checked again...100.7..."Bother!" I said to myself, or something to that effect, and we called CHAM.  As Brian spoke to the doctor, I was packing for a stay in hospital: my goodness, we know this routine so well. 

By Thursday, we were exhausted.  I had spent all of Sunday night in the ER and Sam was admitted to CHAM 9 by about 7am.  It must have been a busy night as we were put in the treatment room while they got room 915 ready...at least it was a single room!  We have had a very different stay this time. Sam was much more upbeat and actually roamed the hallways interacting with the nurses.  He enjoyed the 'Group' meet-up on Wednesday evening, having Chinese food ...eating rice with his hands...so much for being careful when neutropenic...and he was...his counts had dropped very low! 

Sam had a good stay...considering, but Brian and I were struggling with conflicting information and an absence of answers.  Dr. Roth and Dr. Gill had announced with great enthusiasm that Sam was to stop the chemo, Doxorubicin, as he had completed the amount allowed (it damages the heart).  Dr. Cole, on the other hand, thought Sam had four more doses to go.  I, being me, spent most of the week chasing all the doctors, nurses and even contemplated asking the cleaning staff to hurry Dr. Cole along with his re-calculations.  Finally we got the news that Sam had indeed completed the does and would be off the hard-core, count dropping medicine.  He starts methotrxate through his port once a week instead..oh goody! 

So we missed vacation week.  What bothered Sam and ourselves the most was the weekend.  Nana's birthday with a Passover gathering with the Janowski/Zweig clan, followed by Easter on Sunday.  Well, small miracles happen and Sam was home for both...his ANC shot up to 350 in a day so they let him come home...it should be 500 but they let him out for good behavior!!!

Hating Cancer

At bedtime tonight my little boy opened up in a big way.  We were snuggled up for cuddle time and he stated quite categorically, "I hate having cancer, it has changed my life so much and I want my old life back!"  Sam has said this before, but tonight he went into more detail. 

His life is different in so many ways that bother him.  He wishes he could go to school:  this broke my heart as he tried to go today and had such a bad panic attack, Poppa had to take him home.  Sam also wants to be able to do all the things he used to do with his healthy, strong body: ride his bike, play golf, swim, and have playdates.

Sam was also expressive about how sorry he feels that the whole family suffers with his cancer.  He heard Jack open up about his frustrations with seeing Sam get so many toys and replied, "But Jack, it's because I have to have all the procedures and yucky things."  Jack wasn't convinced.

We spoke about how things will begin to get easier; how we will try to start school properly after the vacation, and how his body will begin to get stronger as he feels more able to begin to get around more. We even talked about his birthday (mainly the food he will eat) and the possibility of us beginning swimming soon.  Sam even said he wanted to dive but felt a little too afraid right now.

I marveled tonight at how expressive Sam was with his feelings. (I am hoping the Zoloft takes a positive effect and is not the cause of this sadness).  Strangely my heart did not break upon hearing these words, in fact I felt relieved he was opening up more.  I was able to tell him about things we will do and how, although treatment will last for a couple more years, he should feel a lot better as time goes on.   Of course, as I type, I feel myself crossing my fingers that I am right...but I think I am.

Thankful Yet Again

So week eighteen crept up on us by surprise.  We have done so much 'cycling' it seems we are loosing count of the weeks.  Week eighteen is when the next scheduled lumbar puncture (LP) happened.  Sam received several monstrous chemos intrathecally...thankfully he was put to sleep again, and then began day one of his regular cycle. 

Day one began on Friday this time due to power outages from major storms and parent-teacher conferences all mushed into one joyful week!!!   We were very lucky to be rescued from the blackout by Nana and Poppa's friends, Sue and Marty.  They provided a very comfortable night for Sam, Jack and I while Brian stayed at home to look after the animals.  I was so relieved to be showered and presentable as I spoke to parents, although I secretly wished we could get the LP and day one over and done with on the normal Thursday visit. 

Friday came and Brian took Sam in.  All went well with the finger prick, and Leslie the psychologist was there to support him.  She had to leave just as he was going in to be put under (typical but totally not her fault) and Talia from Child Life took over whom Sam loves to see.  Sam had a whole support team around him as well as his daddy.  I have to admit I do love how well Sam and Leslie have got on.  She has given him so much strength. 

Sam apparently got the jitters just as he was going to sleep as it had been so long since the last time.  He was soothed and the LP went well.  Brian reported everything virtually in real time as I was working but glued to my text messages on my Blackberry.  I am usually very nicely distracted by work and enjoy being there, but that day was different and I was aching to be the one with Sam. 

Once home, Sam settled into the first week lethargy with a vengeance.  He kept commenting on the fact that he was much more tired than usual.  He even slept in on Saturday until woken up at midday!  He has NEVER done that.  We checked in via email with Dr. Cole and he reassured us it was the new addition of the Zoloft.  We are giving it a couple of weeks to see what effects it has and will keep our fingers crossed it calms him without knocking him out.  To be honest, today (Monday) he has been a little more active and (dare I say) the pains have not been as bad.  The steroids are working their number on the eating demands...my goodness that is such and issue...but things are not as bad as I dreaded with the extra chemo pumped directly into his spinal fluid!  The good news (I think) is that, due to the recent and frequent low counts, the dose of the Mercaptopurine has been lowered to 80%.  Hopefully his counts will stabilize a little. 

So we have had quite a week and Sam has been through yet another procedure.  But I am VERY thankful for so much today.  We have had so much help with the blackout, the hospitalization the previous week and the day to day management of working and looking after Sam.  The grandparents are amazing (all three of them) in how they have made our lives bearable.  Our friends have supported us and kept our heads above water at work and at home.  There are even churches and a group of secondary school students in the Bronx praying for him and sending their love each day, (not to mention huge bags of presents for both boys at Christmas and Easter baskets too).    Most of all, I am so very grateful that Sammy's LP showed that he is still in remission...the chemo is working and my Sammy is doing so well.