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).