About Nicholas Defelice

My name is Nicholas and I am 7 years old. Three months after my 3rd birthday I was diagnosed with a tumor in my abdomen. I had no signs of being sick. Mommy & daddy noticed that my poop was whitish/gray and that I was scratching myself a lot. Went to see my PCP where she took labs and I had elevated liver functions and was sent off to have an ultrasound the next day at MGH in Boston. Since I moved around a lot on the first ultrasound, it didn't show anything. I was then sent off to meet with a liver specialist for the next couple of weeks, who then wanted a repeat ultrasound of my abdomen and BAM, there it was, a mass. I then had to have a catscan and then Mommy & Daddy met with the doctors and were told it was a tumor.

I was admitted to the hospital and scheduled for a biopsy the next day. June 28, 2006 was my diagnosis of Neuroblastoma, stage IV, high risk. I had a port-a-cath put into my chest for my chemo and lab draws. I had 25% cancer in my bone marrow and a spot on my left shoulder and a spot on my head. After the 2nd round of chemo I had another catscan and bone marrow biopsy done and my bone marrow was clean and the tumor was shrinking, so the doctors knew the treatment was working. I finished up my four rounds of chemo and then a central line was put into my chest because I was going to have a stem cell transplant. I had another catscan and bonescan and the spot on my head and shoulder were gone, I then harvested my own stem cells in September which I collected 5 times the amount that I needed and then went on to have a nine hour surgery to remove all of the tumor on October 3th, 2006.

Two weeks after surgery I had 6 days of Proton therapy radiation, had a day off and back to the hospital for five days of high dose chemo before getting a stem cell transplant, which led to a six week stay in the hospital. +4 days after stem cell transplant I got VOD (veno occlusive disease of the liver) I was in the PICU for 2 1/2 weeks, on a ventilator and all these machines and meds hooked up to me. I was very sick. Mommy & Daddy said I fought and fought to be strong and to make it through those bad days. I was able to leave the PICU on 11/22/06, the day before Thanksgiving and go to my own room, which I was there for another 15 days and then I was able to go home with my Mommy & Daddy on 12/8/2006. I had to be away from a lot of people for 100 days after my stem cell transplant.

On January 16th 2007 I had a catscan and a bone scan which showed to be CLEAN and still NED (no evidense of disease). I went on to have 7 more proton therapy radiation treatments at the end of February into March because I was unable to have a 2nd stem cell transplant because of what happened on the first one. I started Accutane for 14 days on and 14 days off and finished up July 31, 2007 which was the end of treatment for me. I just recently had another catscan on July 28, 2008, and I continue to be NED.

I just had a relapse from NB on September 29, 2008 on the left side of my head, on the skull bone and it was in my bone marrow. I had my first round of chemo and will have another round before having another catscan of my head in mid November. I am a fighter and will fight this bad guy. I just started Kindergarten in September, which is full days. I had alot of fun this past summer on our boat. I love to go to the park and ride my bike and skooter and play with all the kids. I also like playing with my cousins and friends, singing, and just having lots of fun, Trains and Helicopters are my favorite things. I have a special Mimi & Papa, who I love so much. Mommy & Daddy say that I have alot of energy and that I am their HERO.

It is now January 2009 and I just had my 5th round of chemo. I just recently had a catscan of my head/brain and abdomen on 12/30/2008 and bone marrow biospy. There is still a very small spot showing on my skull bone. The bone is healing. Everything else looks good. Clean bone marrow too!!! I am getting ready to have radiation simulation mid Januray to start Proton radiation at MGH in Boston, late January. I also have round 6 of chemo the last week of January.

UPDATE 2/21/2009: Nicholas just finished round 7 of chemo. He has also started radiation at the Proton Center at MGH in Boston. Nicholas will have 12 days of radiation.

UPDATE 5/10/2009: Nicholas just had his monthly checkup with his oncologist and his labs were good. Nick will see her next month then July we have scans again.

UPDATE 7/7/2009: My scans came back CLEAN, no evidence of disease. Praise GOD!!

UPDATE 8/31/09: Echocardiogram & labs came back fine. Audiogram, no hearing loss.

UPDATE 10/08/2009: Scans are Clean!! Labs are good!

UPDATE 1/8/2010: Clean scans and good labs. Happy New Year!!

UPDATE 4/17/2010: Clean scans. Red blood count a little off. Not enough for transfusion.

UPDATE 5/13/2010: 2nd relapse, in bones throughout the body and bone marrow.

UPDATE 6/18/2010: Abdomen & Brain Scans are clean. Still signal of NB in the bones. Bone marrow biospy July 1st. Finished up two rounds of chemo. Will be starting MIBG treatment in July at Dana Farber/Children's Hosp in Boston. Plan is for monthly checkup and labs and scans every three months. I will be going into the 2nd grade in September.

Thank you to everyone who has kept me in their prayers. I have to say a great big thank you to Father Ron. Please keep the prayers coming. God Bless you all.

Nick power all the way!!!!




About Christopher Mullen

On August 9th, 2008, Christopher was diagnosed with stage IV Neuroblastoma. He started treatment on August 18th.

Treatment Background
Christopher's treatment to date:
Aug-Dec 08: 6 rounds chemo & surgery to remove tumor
Jan 09: 1st stem cell transplant
March: 2nd stem cell transplant
May: 12 days radiation (Christopher was not eligible for antibody treatment at COG or 3F8 because of renal issues)
Sept: started accutane
Dec.: Relapse
Jan - Feb. 2010: 2 rounds Topo & Cyclo
March - April: 2 rounds of Irinotecan and Temodar
May: Tumor resection / cytoxin, irino, vincris

As many of you already know, Christopher is an active young boy. He loves playing with his sister Stella, going on swings, taking a ride in his red wagon, and you will usually find him holding onto a hockey stick just pushing along a ball or anything is his way (I am sure he gets that from his Daddy, uncle Adam and cousins Christian and Nolan). When he was not feeling well I assumed he had yet another ear infection.

The doctor suggested I take him to the emergency room at Children's hospital b/c of his low blood counts and mentioned that they may keep him for a blood transfusion. I could not believe that my baby needed to get blood - I remember being very scared about him having a transfusion (now about 35 of them later when they mention transfusion it does not even startle me). It was then and there that I made a vow to start donating blood (thank you to everyone who does). You never know when you or someone you love may need it.

They scheduled an ultra-sound for the following morning b/c they felt that his spleen was enlarged. I will never forget that doctor coming into our room after the ultra-sound with the news - Christopher has a tumor in his abdomen. I then asked "cancer?". He said they were positive it was cancer but would need to do a biopsi to confirm the type. They left the room and Chris was sitting in a chair holding Christopher and I was kneeling down next to them, shaking, crying, in total disbelief. As Chris puts it, "we were hit by a wall".

They soon moved us to 6 North (the oncology unit). We moved into a room with another patient already in there. His Mother was my 'godsend'. She could see the horror and disbelief in my face as they brought us in the room. She immediately came over to me and embraced me. I cannot even remember exactly what she said to me, but she was the most positive and calming person. We had an instant bond (both of us mothers with our sons, both 18 mos. old, diagnosed with cancer). The families, patients and workers on that floor are amazing.

Soon our families arrived. Thank you to everyone: Nana, Papa, Nana Mullen, Grandpa, Auntie Marlo, Uncle Adam, Avery, Christian and Nolan. They were there with us shortly after we received the news and have been with us every step of the way. I will never forget Marlo's comforting words "It is not just Christopher's fight, or mine or Chris', it was all of ours". WE are all in this every step of the way.

A day later Christopher had his biopsi which confirmed his diagnosis. He then had many more tests that week (CT scans, bone scans, blood tests, echogram, MIBG scan). Stage IV, Neuroblastoma, primary tumor in the left adrenal gland that spread to his chest, 2 nodules in his lungs and a spot on his right femur. After gathering all of their information, the doctor's schedule Christopher to have his central line put in on Monday, August 18. The surgery to put in the central line went well. We would stay in the hospital and he would start chemo the following day.

Today is Sunday and we just got home from the hospital. Our first cycle of chemo is now behind us. Christopher did great...... other than this rash that he got (a reaction from one of the many meds he has been getting). One other thing that surprised me was that Chris and I need to wear gloves while changing his diapers until a few days after chemo. I guess the chemo is so strong that they do not want us to get any on our skin (even through his pee and poop). We have to wear only the blue gloves b/c the chemo can penetrate through the white gloves. What powerful stuff this chemo is.

I pray that it has already starting attacking and shrinking his tumor and other spots of cancer. Chris and I are very touched by all of the calls, cards, food, and well wishes. I am crying right now just thinking how wonderful it feels to know that so many people are praying and thinking of us and Christopher. For the first few days we of course were in shock, crying, etc., but now we found this inner calm and strength. It is something that I never knew I had (but am very grateful for it). Christopher is finally getting a chance to fight back at this cancer.

We are focused on his treatment and beating this in the end. Of course we still have our "moments" but we are remaining very strong and positive for Christopher but also for Stella and for each other. You are all playing a huge role in that. Thank you!




About Charlotte Kelly

Charlotte is a girl that smiled for the first time in 1 month on 7/9. She is her "Mom's best friend". She has been very healthy throughout her life until she developed extremely vauge symptoms, which progressed to more intensive workups. A visit to Children's ED on June 9th lead to a diagnosis of constipation + possible viral infection. No abdominal problems were noted, by touch or by x-ray. Subsequent visit on June 16 to the ER lead us to bilateral kidney inflammation, increased abdominal pain, enlarged lymph nodes, and further imaging. A large tumor was found on this visit, which lead to her diagnosis. Her life is in the hands of the very skilled staff at Children's Hospital Boston, as well as the Dana Farber/Jimmy Fund. A sincere thank you to Dr. Jones, Dr. Irons, and Dr. Belcher at Quincy Pediatrics for their skills and instincts.

Charlotte was diagnosed with stage IV neuroblastoma on June 16, 2009. Since then, she has undergone six rounds of chemotherapy, surgery, and two stem cell transplants.