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 :)