Thank you to the Jeff Parker Foundation

Danny had a wonderful weekend and finished his last full week of radiation. Only two more to go after today. Today is a Chemo day, and I'm home with a sick little one. Carley, Danny and my mom are at the hospital and are prepared for the long day ahead.

This past weekend was a blast! Danny, Matthew, and Carley came over to my house for a visit. I live on the beach, and it was a beautiful day to run and play. I called Carley in the morning and said come on over, who knows when it will 60 degrees again. The kids had a blast building sandcastles, playing chase, finding rocks and sea glass. Danny loved the waves and even tried to get wet a few times. As the tide changed, we decided to head in and have lunch. The kids played some more in the house, had lunch and then it was time for the them to go. Carley took the boys to Plymouth for a date. They went to the playground and out for cupcakes at Cupcake Charlies. One of our favorite places for treats.

On Sunday, the Jeff Parker Foundation treated my family to a day at Gillette Stadium. We had a private tour of the stadium followed by free rein of the field. The kids played a game of football, practiced the Gronk spike, touched the goal posts, and even kick a field goal....Justin (our older brother) was the only one to get it through the posts. After the stadium tour, Woody and Lynn Beal, (board members of the Jeff Parker Foundation) treated my family to lunch at CBS Scene. Once we finished lunch, we went for a tour of the Hall of Fame. The kids loved every second. They dressed up in uniforms, listened in on a huddle, and pretended to ride in the duck tour parade. THANK YOU to the Jeff Parker Foundation, the board members, and the Kraft group for your generosity and time! The memories made yesterday will last forever!

I'd like to wish all of you a Merry Christmas. We are looking forward to our big family gathering tomorrow night followed by Christmas day at my parents house.

Here are some pictures from Gillette Stadium:

Danny's Facebook Page

My sister, Carley (Danny's mom), created a facebook page.  Please go on and like it:)

https://www.facebook.com/dannyswarriors

Today was day 29 of radiation. He has 4 more radiation treatments left. He is such a trooper and has been doing great this week with his treatments.

We have a fun weekend planned, I'll update again on Sunday after our exciting day The Jeff Parker Foundation planned for him....

Thanks again to our of our followers, family, & friends for all of the support.
Hayley

Chemo Champ!

Today is Thursday, feels like Wednesday, and I'm writing about Tuesday! If it tells you anything about this week, we've one heck of one. Busy, stressful, heartbreaking, fun, and encouraging. Days that start at 7AM and end around 9PM. They've had appointments, meetings, family time, etc. With all Carley, Dan, Daniel and Matthew having going on, I'm not sure how they are functioning. I'm exhausted, not there every day, and in it like they are..

Monday after Radiation, the crew (Carley, Dan, Daniel, Nana Janet, Grampa Dave) showed up at the Dana Farber clinic. They were expecting a long day with radiation, clinic and then chemo. When they showed up in the clinic, they found out their appointment moved to Tuesday. The doctors wanted Daniel to meet with a nutritionist. He had lost 5 pounds in the past month and caused concern for the doctors. He was already a boney little peanut. However, on Tuesday, when we returned to clinic he gained a whole 3 pounds!! We are not sure how because he has been getting sick on the rides in, but he did. The weight gain delayed the day, but that is okay. We'll take it.

Daniel started out on Tuesday with radiation. He slept for a while after and then off to lunch we went. I love walking around the cafe with him. He checks out each counter but always ends up at the salad bar....followed by the pizza counter. After lunch, we were off to the clinic. We played cars, watched the snow and played under the chairs. I set up a bed underneath Carley for him. He is extremely shy, and it was super busy in clinic. Lots of kids, lots of bald heads, lots of masks. He needed a getaway, and that is what we made for him. I laid on the ground with him and played with his Mario characters while he dug through my purse. He was looking for dollar bills so we could hit up the gift shop. He loves it in there! After the meeting with Dr. S, he had blood drawn and then we were off for a quick break. Guess where we went....the gift shop. He walked around, check out everything like he always does. He knows the store like the back of his hand. He picked out some gifts for his cousins...a watermelon head rest for Abby so she can swim, a monkey wine bottle holder for Mae because she loves monkeys, a few others that I can not remember. Finally, he came to a decision on a mustache pen that says "How you doin?" when pushed down to write.


We went back to the clinic to visit with Dr. M. He checked Daniel's strength, eyes, mouth and movement. Daniel did awesome. We have a few concerns: he is nauseous and the back of his head is hurting. Radiation has caused the tumor to swell, which is causing Daniel to be nauseous in the area around the tumor. We knew this was going to happen, for now we are increasing his Zofran dosage(an anti-nausea med) if it cannot control it he will go on steroids. The pain that is on the back of his head is from the radiation "sunburn". His hair around the radiation site has started to fall out. We knew this was going to happen, as well. His hair will only fall out at the radiation site. For the first time, I noticed a significant amount of hair that has already fallen out. I had a hard time looking at it. With my heart being ripped in two, I reminded myself not to check it out when Carley was around because I would get teary eyed. I didn't want to make her nervous.

Daniel's attitude has completely turned around. He was excited to head to the Jimmy Fund Clinic for Chemo. He remembered the fun hallway with the bike lane and the hospital bed that moves up and down. He was able to have the Wii system to himself. He jumped onto the bed and started to play. We shared a room with another little girl. She was adorable, quiet but very curious of Daniel. She looks as if she has been fighting for a while. He looks healthy, colorful, energetic. Daniel asked why the "baby" was looking at him. Five year olds crack me up, yet instantly give me anxiety. They seriously have no filter. We chatted a bit with her and her dad. She was working on arts and crafts. She was a bit shy but wanted me to see her snowman she had made. She finished up before Daniel's Chemo started, so we were alone. We had to wait a while because of Daniel's weight gain. His Chemo dosage had to be changed. The treatment was only an hour long. Daniel did an amazing job once again. We were in the car by 5 and on our way home in rush hour traffic. The Jamaica Way is always a fun ride home in the snow:)


On our journey with Daniel, we have made a few friends in Radiation.  One of our friends, Jesse, is not feeling well and has been admitted into the hospital.  He is in a lot of pain and could use lots of prayers.  Please pray for this warrior and his family.  He's been on his journey since he was 3 and is now 7.

Best Friends Forever!

Cousin's are many, Best friends are few, what a rare delight I find the both in you.

Today, Daniel completed week three of radiation! Daniel did AWESOME! Yahoo, we're half way there!

He had a visitor with him at radiation, Mae, his best friend and cousin (my daughter). The ride in was smooth, transition from car to playroom...smooth. Everything was smooth, maybe it was because of his visitor or he is just in a routine.

Daniel was excited to show Mae the place he visits everyday. He took control of the situation, like a true warrior, and held her hand as we walked into the hospital. Together, hand and hand, they ran to the elevators, knocking over everyone in their path (my apologies again to the poor old guy that had to jump out of the way). Five year old's are hard to contain. He pushed the button and helped her move to the back of the elevator. The doors opened and off they ran down the hallway to the playroom. He jumped on the couch and started playing the Wii. Mae sat at the table and started doing arts and crafts. They giggled and joked as the nurses did his vitals. Daniel cracks Mae up. He is the funniest person she knows. I know this because he is the only person that can get her to belly laugh (a nervous; I can not believe he is doing that laugh). When Daniel left for treatment, Mae wanted to go with him. I explained that Daniel had to take a nap while the doctors fixed his boo boo. She had a job to do while he slept. She delivered a bunch of toys to the Jimmy Fund Clinic, thanks to Mamas Move.

Afterwards, we walked to the cafeteria to grab Mae a snack. She would not eat breakfast because of Daniel. She wanted to wait for him. On the walk over, I noticed that she had tears in her eyes. I stopped her and asked if she had questions or concerns, but she pushed me out of the way and kept right on after I gave her a hug. She hurried to get back to him. She wanted to be in the room where he left her, she wanted to color him a picture and work on an ornament she picked out for him.

When we arrived back to the playroom, Daniel was in recovery. Mae visited with Courtney (the life coach) and did arts and crafts with Nana while I went off to be with Carley and Daniel. When I returned to the playroom, a new friend had arrived for his treatment. We've met the family a few times and love having the comfort of another family in the room with us. We chatted about "stuff" while we waited for Daniel to return. When he did he was ready to take his cousin out on a lunch date to the cafeteria. Again, they held hands and knocked everyone over as they ran down the hallway. It amazes me to see this little boy go from sleeping and attached to machines running, yelling, skipping down a hallway a few minutes after waking up. He looks like a healthy little boy. There is no sign of radiation, anesthesia, chemo or tumor. Just a happy little boy having fun with his cousin. How can he be sick?

On the way home, Mae had a ton of questions for me. I've been very open with her about Daniel's tumor. Since day one, she is worried about him. Kids sense sadness, worry, anger...they just know something is wrong. Today helped her understand that he is okay, that he is not in pain and that the people at the hospital are not scary. She saw him laughing. She saw his energy and funny personality return after the treatment. I've told her what a five year old can understand about the boo-boo on his brain. She fired off a bunch of questions. The ones I knew she was holding deep inside for the past month: Why does he have to go to the doctors every day? Why does not he go to school? Why does he have to take a nap at the hospital? What's on his head? Does it hurt? Does he cry? Why does he get mad and throw things? We talked the entire hour while we drove home from Foxboro.

When Daniel and Mae are together, which is almost every day, I find myself with tears in my eyes. My breath short, my heart aching. They love each other so much. No matter what they will be best friends forever!

A few of Daniel's cousins have joined him at radiation. It is essential for all of them to be there for him. He needs their support just as much as they need his. His cousins need to understand what is going on with him. All of them need to experience a day with him, so they are not scared of him. Scared of what is happening to him, scared of the doctors, scared of his treatments, scared of his frustrations. Just plain scared..

Thankful

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:

Family

Friends

Health

Love

Prayers

Faith

Generosity

Smiles

Silliness

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)

“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!

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.