This past week has been a whirlwind for Danny and our family. We're blown away by the response to a little request for cards. The cards, packages, well wishes keep rolling in....Thank you!
Tomorrow, Danny has an MRI. Please say a prayer for him.
Check back for a post on Thursday.
My 5 year old nephew was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG) on October 24, 2013. Diffuse intrinsic pontine gliomas (DIPG) are highly aggressive and difficult to treat tumors found at the base of the brain.
Tuesday, July 29, 2014
Tuesday, July 22, 2014
WOW!
A HUGE THANK YOU!! Thank you for all of the cards, well wishes, prayers, gifts and donations that have made their way to Danny. Our family is blown away at the outreach from all over the world. Danny's 6th birthday is going to be a big one for sure.
We have a few surprises for him this weekend that I will share on Sunday. More picture to come of him opening cards and gifts.
We are blessed! Thank you!!
We have a few surprises for him this weekend that I will share on Sunday. More picture to come of him opening cards and gifts.
We are blessed! Thank you!!
Tuesday, July 8, 2014
Danny's 6th Birthday!
I have so much to post about today! Danny's 6th Birthday is on July 25th. Carley is hoping to gather as many birthday cards as she can for his special day. The information below is where to send them. If you have any questions, feel free to send me an email at danielnickersonsjourney@gmail.com.
A HUGE Thank You to all of our supporters!
A HUGE Thank You to all of our supporters!
Daniel Nickerson
P.O. Box 212
Foxboro, MA 02035
Everything is Awesome!
After our visit with Dr. M, we had lunch and raced down the hall to the Jimmy Fund Clinic. The Clinic is always busy with tons going on. We painted more crafts and then had art therapy. It was a full room of kids playing instruments and singing along. The song of choice today....Old MacDonald...that is until someone said there was a fox on the farm! What does the fox say? (that's for you uncle David) Music therapy followed us into Danny's infusion room. We had our own session with guitars, keyboards and Lego songs. What kid would be singing "Everything Is Awesome" while having Chemotherapy pumped into him??? My warrior nephew, Danny.
**IMPORTANT INFORMATION FOR AN UPCOMING EVENT**
Wicked Good Cause, a community based organization, is hosting a fundraiser on July 19th in support of Danny and another little girl named Delaney. Tickets are On-Sale now.
For more information about Wicked Good Cause and how you can help out, please click here.
Details about the event are below. Please join us for a fun of live music, dancing and special treats on July 19th from 5 PM to 9 PM at the North Hill Country Club in Duxbury.
Tuesday, April 8, 2014
Fundraiser Info!
We are hosting a Danny's Family Fun Day on May 10, 2014 from 11 AM to 4 PM. Here are the details below:
Stay tuned for Raffle information and Volunteer Sign Ups.
(If you'd like to donate a raffle item, please contact hayley@herohelpersofamerica.org)
Stay tuned for Raffle information and Volunteer Sign Ups.
(If you'd like to donate a raffle item, please contact hayley@herohelpersofamerica.org)
More Good News!
Danny is doing amazing! He had his 2 month follow up MRI and guess what??? It shrunk again! So amazing!! He looks great, feels great and is one happy little guy.
Wednesday, March 5, 2014
Superstar!
You're a Superstar....
As we waited to be called for Danny's Chemo appointment, Danny played Wii U in the waiting room. Mario Brothers, of course. After each game, encouraging words would appear. You're a Superstar stood out. Why? Because he is a Superstar. He is amazing and he doesn't skip a beat. Always smiling, joking around and wanting to teach us new things. Yesterday, I finally learned how to play the Wii....and boy was it fun!


The Jimmy Fund was backed up due to all of the kids having treatments that had fevers. Scary! We waited for two hours before they decided to let him sit in the waiting area while having his infusion. Of course while we waited two hours, he sat still. That is until the infusion started. He was up and running all over the place while Carley and I chased after him with his IV stand. My mom and my daughter, Mae, were also with us. Danny and Mae have so much fun together. Their laugh is contagious and their energy is endless.
Before infusion we visited with his doctor at the Dana Farber clinic. He was very animated and excited to have her check his reflexes. We chatted about a few concerns we were having. Just yesterday, he complained that his arm and his knee were bothering him. Any new "thing" scares us. She did a thorough check up on him and said he looks great and doesn't seem to have anything going on. Such a relief to us, however, we will keep a close eye on it.
This past month has flown by in the blink of an eye. Over school vacation, Danny and all of his cousins went to the Rainforest Cafe for lunch, had pictures taken and even went sledding. Here are a couple of pictures from the photo shoot! (Thanks to Auntie Jeannie for organizing!)
This is my favorite picture of the boys. This is Danny's little brother, Matthew. He is 4 years old and is just as funny as Danny. This picture says it all! I was lucky enough to be in the room when this was taken....However, I'm so bummed that the photographer missed the money shot. Matthew was hugging and kissing Danny right before she had them pose for this picture. The bond between is unbreakable.

March is here and we have lots of fun activities going on. Carley, Dan and the kids went to Camp Sunshine this past weekend. I'll get some pictures up on the blog from their fun weekend.
The Jimmy Fund was backed up due to all of the kids having treatments that had fevers. Scary! We waited for two hours before they decided to let him sit in the waiting area while having his infusion. Of course while we waited two hours, he sat still. That is until the infusion started. He was up and running all over the place while Carley and I chased after him with his IV stand. My mom and my daughter, Mae, were also with us. Danny and Mae have so much fun together. Their laugh is contagious and their energy is endless.
Before infusion we visited with his doctor at the Dana Farber clinic. He was very animated and excited to have her check his reflexes. We chatted about a few concerns we were having. Just yesterday, he complained that his arm and his knee were bothering him. Any new "thing" scares us. She did a thorough check up on him and said he looks great and doesn't seem to have anything going on. Such a relief to us, however, we will keep a close eye on it.
This past month has flown by in the blink of an eye. Over school vacation, Danny and all of his cousins went to the Rainforest Cafe for lunch, had pictures taken and even went sledding. Here are a couple of pictures from the photo shoot! (Thanks to Auntie Jeannie for organizing!)This is my favorite picture of the boys. This is Danny's little brother, Matthew. He is 4 years old and is just as funny as Danny. This picture says it all! I was lucky enough to be in the room when this was taken....However, I'm so bummed that the photographer missed the money shot. Matthew was hugging and kissing Danny right before she had them pose for this picture. The bond between is unbreakable.
March is here and we have lots of fun activities going on. Carley, Dan and the kids went to Camp Sunshine this past weekend. I'll get some pictures up on the blog from their fun weekend.
Thursday, January 30, 2014
Relief!
Today was the day we were dreading. The day that made us anxious. We were afraid and uncertain on the drive to Boston. The ride in was quiet, with a little nervous talk. We left early enough so we could stop at Toy R Us for a special surprise. Just a little something to smooth over our transition into Children's and to MRI. He voiced his fears as I held him in the lobby and waited for the others to come in. I held him and promised it was going to be okay. That he was only having some pictures taken. We walked together to the elevators and up we went to floor #2. As we took the corner to MRI, I could feel my legs getting weak. I could feel my body putting on the brakes. I didn't want to be in this hallway again. It's the place we heard the "news". The hallway I remember seeing another mother crying in. The same hallway we cried in. The one I wandered around tying to call family members. I could feel the tension as we walked into the waiting room. It was the place we sat, talked and joked around before hearing the "news". Here we were again, just this time we were prepared to hear news about Danny's tumor.
Shortly after filling out Danny's papers we were ushered out of the room to the prep room. Carley answered questions while Danny and I played with the TV. It took a while to get him registered and prepped. Danny started to cry when he saw Carley in the hospital scrubs. He told her that he wanted to go home and that he didn't like her outfit. She amazes me with her ability calm him while she is dying inside. I watched her rock him, sing to him and reassure him that he was going to be okay. That she would be right there for him the entire time. I wanted to cry for her.
The anesthesiologist arrived right at 12 o'clock and whisked them off to the MRI room. I waited patiently for her to return so we could return to the waiting room to our parents and Dan. For the next hour, we had lunch and sat in the waiting room. The nurse called Dan and Carley back to sit with Danny while he slept. I sat with my parents and talked. The second I picked up my phone to show them some pictures, Carley arrived. She looked funny, with a slight smirk on her face and asked me to take a walk with her. As we turned the corner into the the hallway she looked at me and told me the best news....The news we needed to hear...The news that we have been praying for....The tumor has shrunk significantly!! Music to my ears. I burst in to tears and hugged her as tight as I could. I whispered into her ear....Our prayers are being answered. We told our parents the good news. My mom went to sit with Danny while he slept and I sat with my dad and gave him a big hug. It was the best feeling to sit in the waiting room and know he is fighting and winning his battle.
He slept for a long time after his MRI. Once he woke up, we packed up our stuff and went home. The car ride was much livelier. A sense of relief filled the air.
Thank you for all of your continued support and prayers! Please keep them coming. They are being answered!!
Shortly after filling out Danny's papers we were ushered out of the room to the prep room. Carley answered questions while Danny and I played with the TV. It took a while to get him registered and prepped. Danny started to cry when he saw Carley in the hospital scrubs. He told her that he wanted to go home and that he didn't like her outfit. She amazes me with her ability calm him while she is dying inside. I watched her rock him, sing to him and reassure him that he was going to be okay. That she would be right there for him the entire time. I wanted to cry for her.
The anesthesiologist arrived right at 12 o'clock and whisked them off to the MRI room. I waited patiently for her to return so we could return to the waiting room to our parents and Dan. For the next hour, we had lunch and sat in the waiting room. The nurse called Dan and Carley back to sit with Danny while he slept. I sat with my parents and talked. The second I picked up my phone to show them some pictures, Carley arrived. She looked funny, with a slight smirk on her face and asked me to take a walk with her. As we turned the corner into the the hallway she looked at me and told me the best news....The news we needed to hear...The news that we have been praying for....The tumor has shrunk significantly!! Music to my ears. I burst in to tears and hugged her as tight as I could. I whispered into her ear....Our prayers are being answered. We told our parents the good news. My mom went to sit with Danny while he slept and I sat with my dad and gave him a big hug. It was the best feeling to sit in the waiting room and know he is fighting and winning his battle.
He slept for a long time after his MRI. Once he woke up, we packed up our stuff and went home. The car ride was much livelier. A sense of relief filled the air.
Thank you for all of your continued support and prayers! Please keep them coming. They are being answered!!
Wednesday, January 29, 2014
Ups and Downs...
It's been a long time since I sat down to write. We've had such a wonderful month since the last day of Radiation on Dec. 26th. We've had many family gatherings, celebrated holidays, snowstorms, birthdays and followed Danny on his Make a Wish Trip to Disney World. He seems to be doing well. You'd never know he was in a battle against DIPG. He's energetic, funny, inspiring, positive and happy.
It's hard to imagine three months have past, maybe its because of the holidays. My courageous nephew has completed 6.5 weeks of radiation, he's gone on a "Make a Wish" trip, and is now gearing up for an MRI on Thursday.
After the holidays, we looked forward to our trip Florida. Carley, Dan, Danny and Matthew left on January 11th. They had a few days alone and enjoyed Sea World and Universal Studios. On January 13th we surprised them at Universal Studios...We knew they were going to be in the parade because an extended family member that works for Universal set it up for them. She also set up our surprise visit. They were in shock when they saw us standing on the sidewalk. For the next couple of days we enjoyed all of the Disney Parks. The kids had a blast going on rides, meeting the characters and being together. We had an amazing time and non of us wanted the fun to end. We knew coming home would bring us back to reality. Chemotherapy and Clinic took place on the following Monday. During the clinic appointment, the doctor told Carley it was time to schedule the follow up MRI. We know in our hearts Danny is doing fantastic, but also know that things may not be at as they seem. We are positive and hopeful yet we are all on edge, worried about the results. I know how I'm feeling, I can't imagine how everyone else is feeling.
Please keep us in your thoughts and prayers this week as we prepare for Danny's MRI on Thursday.
Here is a video of our trip:)
It's hard to imagine three months have past, maybe its because of the holidays. My courageous nephew has completed 6.5 weeks of radiation, he's gone on a "Make a Wish" trip, and is now gearing up for an MRI on Thursday.
After the holidays, we looked forward to our trip Florida. Carley, Dan, Danny and Matthew left on January 11th. They had a few days alone and enjoyed Sea World and Universal Studios. On January 13th we surprised them at Universal Studios...We knew they were going to be in the parade because an extended family member that works for Universal set it up for them. She also set up our surprise visit. They were in shock when they saw us standing on the sidewalk. For the next couple of days we enjoyed all of the Disney Parks. The kids had a blast going on rides, meeting the characters and being together. We had an amazing time and non of us wanted the fun to end. We knew coming home would bring us back to reality. Chemotherapy and Clinic took place on the following Monday. During the clinic appointment, the doctor told Carley it was time to schedule the follow up MRI. We know in our hearts Danny is doing fantastic, but also know that things may not be at as they seem. We are positive and hopeful yet we are all on edge, worried about the results. I know how I'm feeling, I can't imagine how everyone else is feeling.
Please keep us in your thoughts and prayers this week as we prepare for Danny's MRI on Thursday.
Here is a video of our trip:)
Saturday, January 11, 2014
Making a Wish!
Danny and family were picked up early this morning by a limo and taken in to Logan Airport. Their Pilot met them at the gate and gave them a tour of the cockpit before take off. They have arrived at their hotel and are already swimming in the pool! I will update more and will add some photos once I arrive on Monday. Big things to come for my warrior nephew! Stay tuned.
Wednesday, January 8, 2014
Doing great! - Quick update
I am way behind on blogging about Danny! The holidays were busy with family events, outings and the big snow storm. We are all so happy to be back in a routine!
Danny had an amazing Christmas with all of his cousins. Santa was good to him this year! He finished Radiation on Dec. 26th. After Radiation, he met most of his cousins in Boston for lunch followed by a special surprise....Disney On Ice. He loved it! The best part of being there was seeing him have fun with his cousins. The younger group of kids sat in front of me (Danny, Matthew, Mae and Abby). They are such characters. Every time a vendor would walk by, all four hands would go in the air in hopes the vendor would bring over whatever it might be. Matthew even yelled out a couple times telling them to come over to us. They enjoyed snow cones, popcorn and cotton candy.
Danny is doing great. He had a clinic and chemo appointment this past Monday and the doctors commented on how wonderful he looks. He is running, jumping, smiling and doing all the things a 5 year old should be doing.
I have tons of pictures to post from the holidays and will get that done by the end of this week. I need my camera ready for next week because.....Danny is going on his Make a Wish trip to DISNEY WORLD:) He leaves on Saturday for a week of fun....and most of his cousins and family members will be there with him!
I'll be in touch soon with some pictures and updates from Disney World!
Danny had an amazing Christmas with all of his cousins. Santa was good to him this year! He finished Radiation on Dec. 26th. After Radiation, he met most of his cousins in Boston for lunch followed by a special surprise....Disney On Ice. He loved it! The best part of being there was seeing him have fun with his cousins. The younger group of kids sat in front of me (Danny, Matthew, Mae and Abby). They are such characters. Every time a vendor would walk by, all four hands would go in the air in hopes the vendor would bring over whatever it might be. Matthew even yelled out a couple times telling them to come over to us. They enjoyed snow cones, popcorn and cotton candy.
Danny is doing great. He had a clinic and chemo appointment this past Monday and the doctors commented on how wonderful he looks. He is running, jumping, smiling and doing all the things a 5 year old should be doing.
I have tons of pictures to post from the holidays and will get that done by the end of this week. I need my camera ready for next week because.....Danny is going on his Make a Wish trip to DISNEY WORLD:) He leaves on Saturday for a week of fun....and most of his cousins and family members will be there with him!
I'll be in touch soon with some pictures and updates from Disney World!
Monday, December 23, 2013
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:
Thursday, December 19, 2013
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
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
Thursday, December 12, 2013
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'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.
Friday, December 6, 2013
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.
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..
Saturday, November 30, 2013
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)
(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!
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.
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!
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:(:(:(
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