The 4th of July 2009

There are certain things in life you feel grateful for. This year I was so happy that our family still got to enjoy the 4th of July at the beachclub. It was a beautiful day. Not to hot and not to cold. Lilly's counts were way up so she was able to do her thing. WE wen to the beach to do our Annual Sand Castle Contest. We have won the last 2 years. My husband Brian usually does it but he was with Andre coaching a baseball tournament all weekend so our friends Denise and Costa took charge. It was a great day .We built a table and chairs this year.All the kids participated even Lilly.Her friends Caitlyn,Tess,Kerry,Maria,Alex,Noah,Jackson all helped. It was a masterpiece...We all still had a pot luck dinner with our friends and watched the fireworks in Seabright like we do ever year at the beach.Lilly sat with Claire on a lounge chair with blankets.Claire is like Lilly's big sister. She loves her so much . They have such a special bond.She has been with Lilly all summer. I hired her to spend time with Lilly for the summer. Claire will be leaving in the fall for college but I felt it was needed for Lilly to have someone other then Brian and myself for her to spend time with. Little did I know that Chemotherapy would not keep or Lilly down She has become the ultimate planner and goal setter..GO LILLY GO ..is our motto.. Lilly will beat this disease!
OH...WE DID WIN THE SANDCASTLE CONTEST!!!!!

Still enjoying summer with a sick child...2009

Lilly is craving normalcy.I admit nothing is really normal for our family right now especially for the summer However we did have some beautiful days at the beach.one day in particular that was not very hot. I set up a bunch of umbrellas for Lilly and brought a bunch of fluids for her ..especially Capri Sun. I also brought her paints and canvas to the beach.The painting Lilly created was beautiful.She actually used pencil first to outline the canvas and then painted over it. The picture is of the Cape May Light House from the Cove Beach in Cape may.There are no actual houses at that location anymore a storm in the 1940's destroyed them but Lilly's imagination added them to the picture.
I think this was my favorite day of the summer. Lilly was so diligently working all day. Later on I even got her to the water to look for sand crabs.You see the day before was really hard. We took Lilly to the beach she loves and we got a handicapped wheelcahir to bring her on. That would prove to be quite a mistake. Lilly hates people staring at her .All she wants to be is normal.Everyone stared at her that day.She was so angry at her dad for getting that chair. It wasn't his fault .He wanted so badly to take her to the water.She refused to go.Lilly loves the ocean .The waves at the Cove can be big enough to surf at one place but gentle enough for kids to ride the waves and boogie board in another.It is a bit weird but this year seemed to be the exception. You see the beach changed from some major storms this year and there was no real surf. I swear the waves are waiting to return next year for Lilly to get better!! Ok..ok I am her mom,I know that's not the real reason but you never know....LOL

Chemo # 3 June 19th-June 22nd 2009

Vincristine,Doxyrubicin,Cyclophosimide,Mesna... is not real kind to our Lilly! This cycle we learn that Atavan can be both friend and foe.. it makes Lilly both really funny or really sad..but it does great working on Lillys nausea.My sister MaryAnn and my friend Theresa came to visit and they helped Lilly work on a graduation party music list.They also showed her all these funny You-tube videos which made her laugh.. later after another too strong dose of Atavan Lilly began questioning me about liking and kissing boys!!! She secretly told me who she liked(like I didn't know already!LOL)We sat in her hospital bed arm in arm while she layed her little head on my shoulder. Precious are these moments of a mother with a sick child.There are things that happen when your child is ill in a hospital that would never happen without that sickness.It's almost like a little gift from GOD that you are doing the right thing when your child looks at you with a big bald head and loving eyes and tell you that they love you and thank you for taking care of me.
They so much want to get better not only for themselves but for you. Sick kids are very smart .They almost can read minds and they tell it like it is.My daughter has become the most honest,obnoxious,funny ,thoughtful,unselfish child right before my eyes. She has courage beyond belief and she is the greatest kid on earth..

Moving up day 4th grade and Andre's 8th Grade Graduation June 19th,2009

How happy was Lilly to be able to make it to Moving up to Markham Day!Its like a 4th grade graduation ceremony because in our school district our kids go 5th-8th grade to Markham Place Middle School.Lilly was so proud when she recieved the STAR STUDENT AWARD for the whole 4th grade!for her spirit,determination and great attitude through her cancer diagnosis and treatment. There was not a dry eye in the house especially me!!! I was so blessed that I was able to share this day with my daughter. I am usually the mom who works and I never get to be with the class moms but they made me feel so special allowing me to see this special day for Lilly. It was so cute to see her sitting with her 2 best buddies from class Aidan and Grace.I swear the smile never left Lilly's face! Unfortunately we left right from school to go to RWJ for Chemo #3..but what a trooper Lilly was as she left all her friends to come fight the cancer battle again.
Last night we got to see my proud son Andre graduate from 8th grade. How handsome he looked in that tux! Lilly wore her wig and a black hat and looked adorable and stylish.If you know Lilly she not only is a social butterfly but has an adorable fashion sense.
I was a proud mama the last two days. These are the days we parents live for.. Cancer can't kill your dreams ...just make you want them so much more..Onto Chemo #3 ... Go Lilly Go!!!

Thank goodness for the beach,Cape May and Good Friends!

The week after the second chemotherapy Lilly was still a bit weak but with the beachclub open Lilly was not going to miss a beat . She became the girl that loves to play cards!. She and the Harper girls Caitlyn,Tess and Kerry and her other friends Maria and Alex basically spend the time at the club instead of swimming in the ocean and pool playing all sorts of games,cards,Clue,Pictionary and making string bracelets. These are the best summer friends ever! God has given us true blessings. Lilly spends her days at home happy and not in any pain at all. Seems the leg pain has disappeared after the first treatment.
We also take another trip to Cape May with Claire and go briefly to the beach and take a ride in a "Surrey".Lilly and our family usually ride bikes everywhere in Cape May so this was really fun to do for a couple hours.We also ate alot of breakfast at Lilly's favorite places,Zoe's,George's and even Lucky Bones. She seems to crave steak these days .She also loves anything salty especially bacon and ramon noodles. Her favorite drink is pink lemonade and Capri Sun..her tastebuds have changed through the chemo and her appetite is very good after the steriods. No loss of weight so far. She even looks quite healthy.

Lilly gets a wig.. make that two wigs ...June 8,2009

It winds up that Locks of Love only gives wigs to kids and grown ups who are in financial need. There are a ton of forms you have to fill out and even if you can pay they will not sell you a wig. I understand all of this but feel bad for those kids that live in places that may not have access to a good wig maker or wig store.Lilly's counselor Karen recommends Lucy's Wigs in Manalapan,N.J..Lucy is really nice and we order Lilly a beautiful real hair wig the exact color of her own. It was really expensive over 900.00 but I didnt have the heart to say no so we ordered it. We also got Lilly a cute 1/2 hair piece made out of synthetic hair that goes under a hat. It looked adorable and Lilly loved it.You can see in the pictures how cute it looks! I know Lilly will live in this style but I got both anyway.I also got her these fleece chemo caps to sleep in. Lilly loves them because they are comfy and not to hot. I know she will miss her real hair but this will really help.
I did find a man who owns a business called WIGS FOR KIDS and he will give ANY child a wig based on medical causes with just a form from your childs doctor. You can find him on the web at wigsforkids.com.

Chemotherapy #2 June 2nd 2009

Amazing how fast 11 days go.. Lilly is admited on-time for the 2nd chemo. There are 2 new drugs in this protocol Etopiside and Ifosfamide. We are admitted for a 5 day treatment which really is at least 6 with hydration and pre-medicating with anti-nausea medicines.Lilly is nauseous after the first day so they add steriods permenently into her anti-nausea medication.It seems to keep the nausea away for most of her 5 day treatment. Lilly gets many visitors and spends time in the playroom.One of the kid tests positive for the flu.. Now we get to add Tamiflu to the list of medicines Lilly has to take.
This cycle also makes Lillys hair fall out in clumps.Actually it just mats like a dollhair that you actually get wet. Her long ponytail is stuck to her head. I do not have the heart to cut it so I call my friend Carla (who is my hairdresser) and she comes up after work to patiently comb through all of Lilly's knots for at least 2 hours.Carla is a saint! She had just lost her sister to cancer about 4 months before. By the time Carla is finished 3/4 of Lilly's hair is in the garbage .We hide it from her but she knows as the tears fall down her face. Lilly who always yelled when I would comb her hair to hard never said a word . I don't think it hurt but it was obvious that Lilly knew her hair was almost gone. Carla then cut her hair into a short shoulder cut. I promise Lilly we will get a wig on the way home from this cycle.. Hard way for a kid to grow up...
Lilly met a new boy named Mark who has Osteosarcoma. He is only 8 years old and he and Lilly become friends. My husband Brian decides to paint with Lilly and adorns her hospital room window with the Boston Red Sox logo. Mark and his mom paint the Yankees on the window to the room next door.. Let the rival begin. Who says you can't have some fun with chemo!!!

There is REAL Life betwen Chemo's!! 5-31-09

As a family we are blessed to have a beautiful beach house by the sea. We also belong to a beachclub near by our hometown that in the summer we spend alot of time at. Lilly loves to be in Cape May. It is our families favorite place. It is where we have many memories. So after a visit from one of Lilly's friends Sophie from Pennslyvania we head down to Cape May to all our favorite places to eat and sites to see!. I bring along Claire who is 18 and like a second daughter to me. Claire is going to be with us for the summer till she goes to college. I ask her not to take a summer job and instead work for us and help us keep Lilly company through all her treatments. This is a Godsend for Lily and Claire are incredibly close and have spent the last few summers together with us on vacation and at the club. Andre and my husband Brian are involved with travel baseball all summer and being I am not working Lilly ,Claire and I head to Cape May.. Exit Zero here we come!!(thats the last exit in New Jersey on the Garden State Parkway).Lilly starts to heal from the effects of the medicine almost immediately!.Although she is on anti nausea drugs she is ready to eat.... and eat we do!!

Ewing's Chemotherapy #1 May 20th,2009

Lilly is admitted for fever and given antibiotics just incase of central line infection. I think it is just her body reacting to the severe rash she has gotten from being allergic to the dressing above her broviac.In the past 9 years or so I have only had Lilly on medication 1 time . We treat with homeeopathic medicines but I now find I have no choice but to give my daughter the toxic drugs that will protect her from infection and hopefully cure her cancer.
Thank goodness for the broviac because all her hydration and medicines require NO NEEDLES. This is key for Lilly who had decked one or 2 nurses while being given an injection!!
So the rash starts to clear and there is no longer a fever after about 6 hours after being admitted so her chemotherapy starts on time.
Lilly meets her first friend on the Oncology floor . Her name is Emily and wears a pretty little cap and is as bald as a cueball!So beautiful those girls looked as they watched the American Idol Finals together in what the floor calls "The Sunshine Room".. Lilly sits with her new friend Emily and her sister who is also named Lilly. Chris Allen is the winner as Lilly is heartbroken Adam Lambert doesn't win.. her 4 chemotherapy medicines are placed on an IV pole Vincristine,Doxyrubicin,Cyclophosimide and Mesna (which protects her bladder).She is also hydrated and given anti-nausea medicines.. It all seems sureal and not that bad until 4 am when Lilly wakes up nauseous. They give her Atavan along with Zofran and she falls back in 15 minutes..
Lilly does pretty well for this treatment. Her beautiful long hair is still decorating her adoring face. I am told this will only last for a few weeks. So I spend the night searching for a wig for my daughter and emailing people and googling Ewing's Sarcoma for the first time..
The next day Lilly searches out her friend Emily but she is sleeping due to the benadryl she takes for her nausea. Emily taught Lilly to ride her IV pole. Emily is Lilly's window to the future. She has about 3 treatments to go and she already has had her surgery. He father is a flurry of information.These 2 people I will grow to love ... and so will Lilly...

Living a Life as a family with Cancer...

After Lilly's diagnosis our small town rose to the occasion and so did my job. One of her best friends Paige put together a team for the Relay for Life at Redbank Regional High School. Paige raised in one week with her friends at school 4000.00 dollars. These kids are 10 years old.My job told me to stay home with Lilly and they will pay me in full.My friend Maria put dinners together for our family every night.We are now a family of a child with cancer.A the Relay for Life
Lilly was pushed in a wheelchair around the tracks for hours by her friends and her brother Andre and his friends.The day was scortching hot and Lilly has developed a rash around the dressing for her brovaic site. She is itchy but smiling all day.
I have a call in to CHOP because the rash has slowly moved upward toward her face. She is due for chemotherapy in a few days.We are scheduled to go to CHOP but it is an hour an 1/2 away. We recently met Dr. Aaron Weiss at Bristol Myers Squibb Hospital in New Brunswick and are thinking of doing her Ewing's protacol chemotherapy there due to the fact CHOP is so far and I am told these kids get fevers all the time and you have many night in the Emergency Room. You have to bring your child in at 100.5 or above.This is to make sure there is no infection in the central line. This is protocal, a word that will become a mainstay of my vocabulary.
They put Lilly on Benedryl and Atarax for the rash.
The day was so much fun for Lilly and she even got a SURVIVOR MEDAL even though we were just diagnosed a bit over a week ago. As I look around to all the survivors I know in my heart my daughter will becoming back next year as a true testament of survival of this cancer.I silently pray lots of Hail Marys.I have taken to going in my yard in the morning and praying to St.Anne,Gerard and Teresa along with the Blessed Virgin. I am waiting for the flowers to bloom as my sign that I am heard. The flowers bloom daily in my garden.. I feel God there.
Lilly spiked her first fever 2 days before Chemotherapy. I quickly learn the ropes. I also quickly chose to take Lilly to RWJ Bristol Myers Squibb instead of CHOP . Lillys fever is over 101.4 and Dr. Attyeih at CHOP help me make that decision because he knows I am in good hands with Dr. Weiss.He will follow Lilly from CHOP.
Lilly is admitted Sunday night to room 2005 in the Pediatric Hemotology Section Of RWJ. This will become our new home away from home for the next 6 months..