Saturday, November 30, 2013


To all of our friends, family, new friends and followers:
Thank  you for the support over the past month.  Our family truly appreciates it.

Since Thanksgiving was two days ago, I'd like to share what I am thankful for:
Children laughing
Santa and his elves
and most of all
Doctors, nurses, therapists and many other helpers at Children's Hospital, Dana Farber and 
Brigham and Women's
Here's a video of our family on Thanksgiving.
(PS: my brother Justin is going to kill me, he works nights and was asleep before dinner started)

Wednesday, November 27, 2013

“I don’t know how you do it…"

Post from our sister-in-law Donna

I’ve often wondered this when thinking about what Carley has had to face. I’ve heard about the trips to the hospital and the endless appointments which have rarely been positive. I see what she goes through when we’re together; being the mother of 2 young boys can be a challenge on a good day! But I can only imagine all that she has to endure on a daily basis.

The following is an excerpt from a blog written by Patrice Kelly who can speak to this first hand, like so many other heartbroken parents. I work with Patrice’s sister, Michelle.  Patrice lost her daughter, 5 year old Charlotte, to neuroblastoma in 2011. Charlotte fought from the time she was diagnosed at age 2 1/2, until the very end. She was a warrior, just like Daniel.

“I don’t know how you do it is a phrase I often hear. It is a phrase I would say to someone who had a tragedy in his or her life. It is a phrase I would say when Charlotte was in treatment, and my new found cancer friends children died. It is not wrong or right to say it. It is a normal statement. In fact, it is a phrase I often ask myself. When people say it to me, I usually say “I don’t know how I do it either, but I am doing it”……“Doing it” is something I, and all of the other parents who have lost children, literally do not have a choice to do. We have to go on, carry on, live, eat, sleep, breath, function, and suffer. To “do it” is all we can do. Unless we give up. Which most of us will not. “Doing it” consists of faking it, screaming inside, feeling constantly alone (no matter how many people are around), pushing out disturbing memories, swallowing tears, and fighting the “cancer” demons that creep into our existence. “Doing it” is trying to fit back into your past life, which will never be the same or “ok”. “

Carley- We will help you “do it” in any way we can. And Daniel, we will never give up!

Tuesday, November 26, 2013

Don't call me that!

After a long day at the hospital, we returned home around 7PM. I had to get in the car after a two-hour ride from Boston to Foxboro, for another hour ride home to my house. I turned to Daniel and said good-night handsome, you did awesome today....His response, "don't call me that!" He cracks me up.  I love him so much it hurts!

Our day started out around 7:30AM. We arrived at the hospital at 9AM. First stop, radiation. He played the Wii with his Dad while we waited for the nurses to call him for his port access. He went in for treatment and we sat and talked with one of the social workers. Daniel's having trouble with waking up from his treatments. He hits, he yells and runs off. He's scared and anxious. Who wouldn't be.  Lots of unfamiliar faces standing over you as you fall asleep in one room and wake up to new faces in another room.  I'd freak out too. This doesn't happen everyday, but when it does happen it makes transitioning difficult. We have a plan in place and started working on it yesterday. 

He slept for over an hour after his treatment. He needed the extra nap and woke up happy. He ate breakfast, played the Wii and off we went to clinic. We met with his team of doctors and discussed his treatments. They checked his strength, walking and hand-eye coordination. He did awesome and smiled the entire time. Our team of doctors are inspiring, they keep the important tasks fun.

When we finished clinic, we walked to the Dana Farber building for infusion. Walking down the hallway, we had no idea what to expect. The hallway had a bike lane, thanks to the Pan Mass Challenge. We pretended to ride bikes as we raced down the hallway. Each of us holding back tears, with lumps in our throats as we raced each other with our smiling boy. Of course Nana and I were the silliest passing each other and driving the other people in the hallway nuts. Daniel was having fun, laughing out loud and that's all that mattered. We arrived in room 6, met our nurse and she got us set up for Chemotherapy. Dan found the Wii station and brought it in the room for Daniel. I set up his bed so he could sit up and play, while Carley filled out some paperwork. He snuggled into his fuzzy blanket and started his Mario game. He had no idea that his little body was having poison pumped into it. He smiled, he played, we laughed and ate for the 120 minutes of treatment. He finished up around 5PM. We jumped in the car, and started our journey home. Leaving the hospital, after a long day, with a sick kid is no fun during rush hour. Daniel was a CHAMP yesterday. I'm so proud of this little guy I get to call my nephew.

Friday, November 22, 2013

The most important person in the room is the child

Daniel has completed two rough weeks of radiation. Each day is different. He's been having difficulty getting out of the house each morning. Once he's in the car, he calms down and enjoys the ride until he realizes where we are. He becomes anxious and nauseous. We have to roll all the windows down in the car so that he feels better. Once we arrive at the hospital, things get a little better. He knows there is a reward at the end of treatment, plus he gets to play in the playroom until his treatment starts.

Every day is different, from waking up after treatment to car rides to the hospital. Today, he slept longer after treatment. He seemed disoriented when he woke up. He was angry, hungry and it took a while to get him settled.  Yesterday, he was so exhausted that he fell asleep on the ride to the hospital. The radiation is starting to catch up with him. 

Each day we plan a reward activity. Monday, we went to the Enchanted Village. Most of his cousins were able to join him. The kids had so much fun playing in the snow, riding the Polar Express and going to Ikea for dinner. Strange spot, I know, but the kids loved it and that's all that mattered. We (Gail, Carley, Mom and Dad) sat at a table across from the kids. They were laughing and joking around the entire time. It was THE BEST! Their laughter is contagious and I captured it on video without them knowing. Tuesday, Daniel went to the movies. Wednesday, it was cousin day again. We played at Gaga's before heading to Nana and Gramp's (home for Daniel). They did legos, played video games and watched a movie. 

Monday he starts Chemotherapy. He will receive Chemo every other Monday for a year. It will continue after he has completed his radiation, which ends on Dec. 26th. Next week is a short week for us. He will only go in Monday, Tuesday and Wednesday. He gets to enjoy a long break over the Thanksgiving weekend.

My sister is so amazing. Her love for her boys is pure. They are her world, her life, her breath, her everything. She is strong and courageous. She smiles when she doesn't want to. She cries when she's alone. She does what she has to do because she is a mom. I wonder how she does it everyday. She has to, she has no choice. Mothers can do ANYTHING! You have to because you know that you're not the most important person in the room...the child is. 

Please excuse my pictures, I took them with my phone:(:(:(

 Let it snow, Let it snow, Let it snow!

Monday, November 18, 2013

Weekend Fun and Fundraising!

This weekend Daniel had a blast spending time with his cousins. They played all day yesterday at Gaga's and Big John's (his aunt and uncle - my older sister Gail) house. Gail and John's house is designed for kids. Huge yard and a basement to run wild. My sisters and I watched out the window as the kids played train, chase, had rides on the lawnmower and school. I took lots of video, because its rare to see them all getting along for such a long time. 

While we were playing, Daniel's father and family were fundraising at Salon 10 in Plainville. Here are some picture from the day:

Thank you to all that participated! 

Sunday, November 17, 2013


Have you heard the song "Brave" by Sara Bareilles?
Every time I hear the song I picture these two people.  

You can be amazing
You can turn a phrase into a weapon or a drug
You can be the outcast
Or be the backlash of somebody’s lack of love
Or you can start speaking up
Nothing’s gonna hurt you the way that words do
When they settle ‘neath your skin
Kept on the inside and no sunlight
Sometimes a shadow wins
But I wonder what would happen if you

Say what you wanna say
And let the words fall out
Honestly I wanna see you be brave

With what you want to say
And let the words fall out
Honestly I wanna see you be brave

I just wanna see you
I just wanna see you
I just wanna see you
I wanna see you be brave

I just wanna see you
I just wanna see you
I just wanna see you
I wanna see you be brave

Everybody’s been there,
Everybody’s been stared down by the enemy
Fallen for the fear
And done some disappearing,
Bow down to the mighty
Don’t run, stop holding your tongue
Maybe there’s a way out of the cage where you live
Maybe one of these days you can let the light in
Show me how big your brave is

Say what you wanna say
And let the words fall out
Honestly I wanna see you be brave

With what you want to say
And let the words fall out
Honestly I wanna see you be brave

And since your history of silence
Won’t do you any good,
Did you think it would?
Let your words be anything but empty
Why don’t you tell them the truth?

Say what you wanna say
And let the words fall out
Honestly I wanna see you be brave

With what you want to say
And let the words fall out
Honestly I wanna see you be brave

I just wanna see you
I just wanna see you
I just wanna see you
I wanna see you be brave

I just wanna see you
I just wanna see you
I just wanna see you
See you be brave

I just wanna see you
I just wanna see you
I just wanna see you

I just wanna see you
I just wanna see you
I just wanna see you

Thursday, November 14, 2013

God only created so many perfect heads, the rest he covered with hair

Today was day 5 of radiation, and it was my turn to drive in and spend the day with Daniel. I arrived at my parents house around 8:30 and helped Carley get Daniel ready to leave. This was my first morning with him since he started radiation and I'll be honest, it was difficult. He is angry, hungry and taking it all out on his mom, which is heartbreaking to see. She tries to make him happy with rewards and will do anything to just get him in the car. Avoiding the kitchen is impossible! No one eats or drinks anything until he is under and receiving his radiation.

Once we were in the car and moving he was fine. He played with my Ipad, and then his Nintendo DS. He was entertained the entire ride. We arrived at Brigham and Women's hospital, parked the car (a cool 27 degrees outside) and went down to the bottom floor to radiation. He showed me the playroom and we played with most of the toys. We built a castle out of blocks while he was given some medicine for nausea through his port. He covered his nose because he hates the smell of the alcohol wipe. We painted with dot paints and took turns smelling markers.  Little does he know I was cheating because I have no sense of smell:) Just as we started a game of tic tac toe they called his name. He gave me a huge and told me to hold off on our game until he came back. Carley walked him down the hall to the radiation room, he cried for a minute until he fell asleep.

I looked around the playroom at all the art work on the walls from the other patients. It broke my heart to see the ages of the kids. Why are kids getting cancer? Why do they have to go through these horrible treatments? Poison being pumped into their little bodies to kill poisonous blood cells. It infuriates me. These kids have such a positive outlook on life. They are smiling, playing, making new friends and having their hearts broken...a blog for another day. As I walked around the room I found this picture with the words, "God only created so many perfect heads, the rest he covered with hair."
It gave me chills, but put a smile on my face. It was exactly what I needed at that moment.

While he was in the room we chatted with the life coach specialist. We asked what is so scary about the room, how long the treatments last and why he goes to sleep. Having an 11 AM appointment is difficult for a hungry 5-year-old. He's not allowed to eat after midnight and by the time we get in there he is starving. He has to go to sleep to hold his head in place while wearing a scary looking mask. There are doctors, nurses,  and specialist in the room looking at him while he falls asleep. Talk about intimidating a 5-year-old, however, they are there to make sure he is safe. Other kids that are receiving treatments can stay still, however they don't have a scary mask holding them in place and are in for treatments for only 15 minutes. I can barely sit still for 5 minutes let alone in a machine for 30+ minutes. Sleep is the best way to target this tumor.

The nurse let us know he was done and that he would be wheeled by any second. We gathered our belongings and went to recovery. He was trying to get off the bed, but he was still asleep and the nurses needed to get his vitals before he could get in the carriage. His carriage is his safe place. Once they said he could be moved, we put him in the carriage and I wheeled him around to help calm him down. We went back the playroom area for a quick snack while he woke up. After a few bites of food he asked if we could finish our game of tic tac toe.  5-year-olds don't forget anything!

After he ate his cereal, we walked over to the Yawkey Center for Clinic. My emotions were all over the place, wanting to cry my eyes out walking into the radiation room, seeing how comforting all the toys were to Daniel, to walking back down the hall to Dana Farber.  How does my baby sister do this everyday?  When does she get to breakdown and cry?  How is she feeling inside?  I can't imagine how broken up she is.  I know she'll talk when she's ready, I know she'll share on here someday.   I wish I could hug her all day and tell her it's going to be okay.  She has so many people around her holding her up and praying for them daily.

Clinic day always falls on a Wednesday, at every hospital, I remember from my days at Shriner's. We walked into the crowded waiting room, filled with lots of kids with bald heads and huge smiles. Overwhelmed, Daniel jumped out of the carriage and ran back to the elevators and pressed the down button just as one of the doors opened and jumped into the elevator. Good thing I was right behind him to get him off. Only problem with picking him up, you CAN'T because of his port. I had to scoop him up like a baby.  After a few minutes he felt comfortable walking into the crowd and found a toy to play with until the nurse called his name. He was brave getting his blood drawn via the port. Then we met with the team of doctors. They checked his strength, watched him play and checked in his mouth. The doctor told him he had a blue tongue, and of course like any other 5-year-old he tried to look at his tongue until he decided I needed to take a picture so he could see it.
We went over the next steps in his treatment. He starts Chemotherapy on November 25th and will have it every two weeks. He should not get sick from the Chemo and will not lose his hair.

After his appointment we had a little pizza party in the cafĂ© before heading home.  As we walked back to the car over the hospital connectors, Daniel sat down in one of the hallways.  I knew exactly what he was thinking...slippery floor, slanted hallway, maybe I can slide down to the other side.  Everyone in the hall burst out in laughter because they all thought the same thing.  Come on Dana Farber, you make things fun for sick kids, why not make a hallway made of slides?

Tuesday, November 12, 2013

Quick update - 4 treatments down!

Daniel had a fun-filled weekend with his parents.  They went to Plimouth Plantation on Sunday and enjoyed the day in Plymouth.

Daniel was less anxious about his treatment yesterday and today.  He slept a little longer after treatment yesterday, woke up and went home.  Today, he woke right up, was a little angry, ate some food and went to Big Nana's house for a quick visit. 

Tomorrow is my day to take Carley and Daniel into Dana Farber.  I will update again tomorrow.

Thank you to all who are following us and for your generous donations to Carley, Dan, and Daniel! 

Saturday, November 9, 2013

Two down - Let the WEEKEND begin!

Daniel was a warrior this week. He completed two radiation treatments and started to fall into a routine. On Thursday, he was less apprehensive about the needle because he knew he wouldn't feel it. He was cranky and hungry, but walked into the room with a few tears. The late morning appointments are tough since he cannot eat after midnight, but that will change next week. Carley greeted the nurse in the hallway after he completed his first treatment. Some kids wake up happy from anesthesia, others wake up tired....Let's just say the nurse asked Carley if she could talk to him about using his words and not his fists when he wakes:) Poor little guy.I got to spend time with Daniel after his treatment. Let me tell you, he had his energy and laughter back. He was jumping around, playing games with Mae, Abby and Matthew and laughing at a show on the computer. His laughter is contagious!He fell asleep around 7PM but woke up sick at some point in the night. Carley gave him some anti-nausea medicine to make him feel better.Friday, was much easier. He was ready to go in, his appointment was a little later and much shorter. When they arrived at the hospital, the life coach greeted them. She promised Daniel an Ipad to play with, which she brought in from home. The Ipad helped distract him while Daniel waited to be called. He got up, walked into the room and asked Carley to hold him while he fell asleep. Carley was standing next to him when he woke up, he ate some food and off they went home.

A few people are asking "How can we help?"  or "Can we send a card or gift"
We have set up a PO Box for Daniel.  Please feel free to send here:
Daniel Nickerson
P.O. Box 212
Foxboro, MA 02035

Friday, November 8, 2013

Radiation Day 1

Daniel had a fun week so far. On Tuesday, Daniel's uncle John took him and his brother to the Foxboro Police/Fire station for a day of touch a truck, only it was just for them. Guess that's a perk of having and uncle that is on the police department. They got to sit on the motorcycle's, turn on all the lights and sirens and even got a ride around town in a fire truck. I'd say it was a pretty exciting day for the boys. Yesterday, we had an appointment with the team doctors at Dana Farber. It was our first day at Dana Farber's Yawkey Center. It took all of my strength to hold in the tears in my eyes seeing my baby sister walk up to the counter to check her baby in. I know how felt inside, sick to my stomach and dizzy. I can't imagine the feeling in her body. No one should ever have to do go through this! Her strength and courage amazes me every day! Daniel was afraid of the unknown. He knew he had to have blood drawn and is afraid of needles, like any 5 year old. Once they showed him how his port worked he was fine. No more painful needs for him. He enjoyed the video games, which kept him busy during the appointment. We talked with the doctors and made a plan to start Chemo in two weeks and to visit with them again next week after Radiation.
Today is the big day..First day of Radiation! He heads in Dana Farber this morning. It is killing me I cannot be there with them today, but I will be home with the girls taking care of Matthew. I will do anything I can do to help ease her stress.
Let's go laser beam and kill this tumor!!!


Danny had a great weekend with friends and family.  Last Thursday he had his port put in and was resting at home on Friday.  He was jumping around and playing with Matthew, Mae and Abby as if nothing happened the day before.  Yesterday, we had our usual family dinner at Gail's house.  The kids dressed up in their Halloween costumes and played haunted house. 

Danny has a few more days to rest and play before starting Radiation on Thursday. 

I will continue to update this blog with any news.  Feel free to email me or call me if you have any questions.

October 24th - The day we found out.

On Sunday, 10/20, Daniel started using tilting/turning his head to the right to fix his vision.  He would turn to look at something and have to turn his entire body until it focused.  It was noticed at Sunday dinner and became a question of why is he doing that.  He had fallen the day before at the playground and had a scratch on the side of his eye.  Carley took him to the doctors the next day and was told to watch him.  On Tuesday he complained of a headache and was still looking out of his eye funny so they took him to Norwood hospital.  They were told to watch it and see their ophthalmologist, which they did and again told to watch it.  On Wednesday morning, Daniel’s eyes were crossed.  He told them he was seeing two tv's and everyone had two heads.  They called the doctor and went straight to Children’s hospital.  They spent the day there and eventually were admitted.  He saw and Ophthalmologist there and he said Daniel’s nerves in his eye looked great and that he seemed to have vision in his left eye.  He was then transported to the Neurology floor to wait for an MRI.
10/24/13 - Daniel went into the MRI around 11:30 AM.  My mother and I arrived and sat with Carley and Danny while we waited for the results we did not expect to get.  We sat with Neurology team and heard the most devastating news a parent/family member could ever hear.  Their 5 year old son has a brain tumor in his brain stem.  Something they call Diffuse Intrinsic Pontine Glioma.  A dangerous, aggressive tumor.  It cannot be operated on because it is in the Pons of the brain stem, which controls the 12 main nerves of the body.  Breathing, swallowing, movement, eyesight, etc.  What they can do is radiation and chemotherapy as well as a biopsy to find out exactly what the mutations of this horrible disease are.  The biopsy has only been done 20 times in the past year.  Thank god we live so close to the most amazing doctors in the world.

The problem with these types of tumors is they can't tell what it is unless they do a biopsy.  Typically with Chemo, the brain fights it so it cannot enter the brain. So a biopsy will help understand what type of tumor it is and what types of Chemo we can try.  We will not know that until next week.

They will be spending a lot of time in Boston at Dana Farber starting today.  He will begin radiation next week after recovering from the biopsy which is on Monday.  The radiation is 6 weeks, Monday - Friday,  no holidays or weekends.  During that time, they may also begin chemo.  Other things to think about...He cannot be around any kind of illness.  If you cough because you have a scratch in your throat stay away:)  You never know!