Superman Sammy was a wonderful Honored Patient at this year's Light the Night walk at Playland. We had so many people come to support us, including friends form work, our neighborhood (even though many had moved away), and as far as from California and Florida!!! There were many orange t. shirts showing Sammy much love that night.
LPAC danced again and wowed the audience, and the overall turnout was excellent. We have raised $8500 to date and there is more to come.
Sammy was cold and tired by the time he needed to go on stage...we had partied the night before with all our friends from near and far...so he was not as on form as usual once on stage. He did well, however, and I spoke for him and talked about our journey, and how much I want the road we are all traveling on to be CLOSED for good...no more cancer!!!
Sammy and I had been videoed earlier in the day to promote LTN and Sammy was also interviewed by News 12 Westchester. He really is getting to be an old pro at the celebrity thing!
Walking was wonderful, surrounded by so many people who were there to support us as well as the Warriors. Peter had returned home from college to be there and was as much an inspiration as ever. He really is the vision of hope that drives parents forward.
Final numbers and amounts have yet to be counted..I will let you know as soon as they are. But for now, here are some pictures of the night:
"The sun is setting...the sun will rise another day!" (Long Road) EV
Well, the day for the sun to rise has finally come... Sammy is off treatment. Strangely, I didn't leap to the computer to share it with you all as soon as it happened. In fact, I have avoided this blog for quite some time. I am not sure why...I just didn't want to post anything.
I do have fun moments to share:
We went pumpkin picking at our usual farm and had fun before treatment was over.
During week two of the last cycle, we journeyed to Maryland for Cousin David's wedding with the beautiful Chesapeake Bay as a backdrop .
The boys enjoyed the hotel pool! Sammy perfected his handstands :)
Then came the final dose of Mercaptopurine. I never thought this would come. I captured the moment on camera...felling strange for wanting to. First I had to crush the pills...
This is our box of poisons medicines....the entire drawer is filled!
Once the pills were crushed, I mixed them with coke...once the white powder was hardly visible, it was time to drink it on down.
Nothing like drinking in your sleep. Sammy actually doesn't remember most nights.
To celebrate, balloons and gifts awaited the boys on the final day of chemo...Sam would be going into the clinic for his final dose of Methotrexate. Jack wanted to get up early with him to cheer him on.
Leslie came with goodies: A big box of donuts and juice to celebrate!
Megan had to have a hug!
The following day, a surprise awaited us....the entire school (and most of the district) donned the orange Superman Sammy t.shirts again to cheer Sammy at the end of treatment. We walked out to the playground to a sea of orange and chants of "Sammy..Sammy". Amazing and very emotional!
So now it is over...except it really isn't. While we feel very lucky, we still have a long time before Sam is five years clear. We still have to draw blood and hope nothing shows up in it every month. We still have to force medicine into Sam to protect him as his body is still weakened from the chemo. We still have to have heart, major organ, and cognitive testing done to see how Sam is doing.
I don't know if I will blog all of this...I hope I do....but for now I just want to put things as far behind me as I can. Of course I can't do that really....next week is the big Light the Night walk....it means so much to us and raises MUCH needed funds for fighting blood cancers. I will never stop raising money to find a cure...to beat cancer....to know other children do not have to go through what my beautiful little boy went through. It has been a LONG ROAD indeed!
While we celebrate the end of treatment in a few weeks, the picture I took yesterday (see above) clearly shows how much of a toll the chemicals we have to give him to fight the cancer takes on his little body. This is "Steroid Week" an experience I would not wish on my worst enemy. Hence the need to continue looking for cures and medicines that are less harmful for patients: Sammy is disabled...hopefully able to recover once treatment stops...and we have to monitor himforever to see if late-effects do more damage as he ages. If you want a fun challenge, promote your blog, have the chance to will $100 gift certificate to Amazon AND help kick cancer's butt, click on over to Shannon's wonderful blog designed to help Sammy and the thousands of others fighting now and in the future.
As we come to the end of Childhood Cancer Awareness month, let me ask one more favor from you.
Children are diagnosed much later than many adults because doctors just don't look for cancer in the young, or they don't recognize symptoms until the cancer has spread. In addition, children are given treatments which are fifty years old...protocols have changed and survival has improved, but the late-effects can be debilitating.
Yet the national government allocates a minuscule amount of cancer research funds towards childhood cancers. ALL childhood cancers get about 2% of all funding provided for cancer research.
If you would like to help remind the government that this situation is unacceptable, especially as tomorrow between 35-47 children will be newly diagnosed, please click on the link to sign the petition to the White House to increase funding for childhood cancer research.
I did it....I am AWARE of childhood cancer...I have watched my son go through hell. Please take the two minutes needed to sign the petition: also so we might prevent other children...sadly not the 35 kids diagnosed tomorrow or the 35 diagnosed the next day....but maybe we can help the children who will be diagnosed a year from now....only they will be caught early enough to avoid the ravishing chemo and radiation that render a tiny body limp and helpless. Or they might be blessed with new treatment options, a new drug, or a therapy that eliminates some of the pain. This will only happen if the funding is there, so please help that become reality for the children who will have cancer!
Thank you from the bottom of my heart!
Katy xxxx
Sammy only has less than a month until he's off treatment. In a couple more months he is going to have his port taken out. That's when it's PARTY TIME!
These are Sammy's words. He wanted to tell you all himself!
Yankees - full of cancer but we didn't know it yet
Today, two years ago, right about his time, I took my Sammy to the ER. The doctor told me he had cancer! Our lives changed forever. I still remember every moment of being told that diagnosis...EXACTLY what the doctor looked like, how Sammy was sitting on the bed looking up at me wondering what was going on, where the phone was across the room, what the wallpaper border looked like!
Today is our diagnosis anniversary...but more importantly, our STILL ALIVE anniversary! Sammy, you rock!
The above is my FB update...
Sleeping during the first weeks of chemo in hospital
I feel strange about the whole thing. I am taking the good and rolling with it, yet still my heart breaks too often. Steroids are coming up and I dread it. But...at least we are still giving the steroids and not mourning the loss of a fantastic boy. Tonight I will remember the first night....I wish I could block it out forever. I don't mean to dwell on it...it is just something I cannot shake from my mind right now.
Another stay in hospital - our second home during the first year
I am experiencing something many know too well....'survivor guilt'. Yup, I should be over the moon, grateful, making the most of it all, but I feel guilty that seven mothers that I know about are not able to worry about steroids any more. They talk to their child in Heaven! Yet I am so grateful to all those who celebrated our two year mark...they saw it as a good thing and, believe me, so do I! But celebrating the fact your son is still alive SUCKS! It means he was dying.
Sammy is so used to the clinic he can goof around now!
Here ends my negative rant about a positive day....we caught the evil monster before it took Sammy...we are beating it to a pulp....Sammy is the bravest kid I know and his brother, Jack, is beyond compassionate, patient and loving. They both grew up too quickly, but they are both amazing people. So let's celebrate!
I frequent the site of a beautiful young cancer survivor who has been traveling to promote her book about her journey through leukemia, Melinda Marchiano
and came across a link that made me smile, cry and rejoice...all at the same time.
During construction of the Richard A. and Susan F. Smith Research Laboratories in 1996 adjacent to the YCCC site, construction workers performed a similar honor – painting hundreds of kids' names along with smiley faces and messages like "IRONWORKERS THINK YOU'RE GREAT."
The workers were so moved by the children who peeked out at them from the clinic windows that they "passed the hard hat" weekly to collect cash donations for the Jimmy Fund.
This is now being repeated and children are being immortalized on steel as a new construction goes up for the Dana Farber Institute. Sammy's protocol is Dana Farber.
It is a beautiful thing when a suffering child can be made to smile again.
September is CHILD CANCER AWARENESS MONTH - what can you do to bring a smile to the face of a child with cancer? Some of you may only need to walk up to him or her and tell them you love them. They are your children and you need no month to remind you that they have cancer. Some of you may know a child with cancer and will send them a card wishing them well, reminding them how much you think and care about them. Others may not know anyone personally but might make a small donation to a charity that helps children fight and survive.
A very small percentage will do nothing.
Goof-ball AKA- Superman Sammy!
On Sammy's behalf, we thank you for all the cards, gifts, visits, letters, donations, love and support. Without these he would not now be able to smile through the treatments, he would not have the fight in him that he does. Today Sammy fights for others and is an inspiration to those who meet him. You have no idea how much your small token of love did to change the world!
