Cancer Free & Living Her Dreams
Cancer Free & Living Her Dreams Written by Rachel Wood, Director of Marketing Last September, many of you followed along as we introduced families and unique perspectives of those affected […]
Tag Archive for: This is Childhood Cancer
Through My Eyes: Final Results
Through My Eyes is a series in which those affected by childhood cancer share a behind-the-scenes look into what it’s like to be in their shoes. Read every perspective. Become aware and donate to help create solutions for kids fighting rare pediatric cancer.
Remember, it’s not about a month or a gold ribbon…
It’s about Isabella who fought neuroblastoma 5 times and ultimately lost her fight at age 7.
It’s about Madison who just relapsed from osteosarcoma when a tumor was found in her lungs. First time diagnosed, cancer was found in her femur. 6 years old.
It’s about Corey who is fighting stage 4 ewings sarcoma and the doctors recently discovered another spot on his pelvis. 20 years old.
It’s about Merritt who is enduring 42 weeks of chemo due to rhabdomyosarcoma. 2 years old.
It’s about Nicholas who just had a hip replacement because osteosarcoma was found in his bones and lungs for a 2nd time. First time diagnosed, cancer was found in his knee.17 years old.
It’s about Brinn who just finished radiation and moves into phase 3 of her neuroblastoma treatment. 2 years old.
It’s about Max who just learned he is in remission from neuroblastoma, but still has a long road ahead of him with immunotherapy and therapy for how the drugs have affected his mind and body. 3 years old.
It’s about Mackenzie who was diagnosed with DIPG and the doctors gave her 12-18 months to live. 3 years old.
It’s about all the other kids fighting cancer past and present.
It’s about all their moms and dads who would change places with their child fighting cancer in a heartbeat. Just to remove their pain.
It’s about all the siblings who have been affected by cancer just as much. And forced to watch their brothers and sisters suffer like no-one should.
It’s about all the caregivers and loved ones who silently cook meals, do laundry and bring comfort to kids, young adults and their families fighting.
It’s about all the oncology nurses, child life specialists, pediatric oncologists and everyone on these kid’s cancer care teams invested in their childhood cancer fight day and night.
It’s about listening and being aware.
It’s about bringing kids with cancer hope.
It’s about funding more treatment options.
It’s about ultimately finding a cure.
Thank you for listening, engaging and sharing this month. Thank you for donating. In the month of September, we raised $26,499.95 through the cancer warrior #ThroughMyEyes perspectives. We reached over 300,000 people on social media. We will continue to bring you updates on not only these kids, families and loved ones, but many more. Please continue to listen, engage and share. We count on you to help us open as many eyes as possible.
*** THROUGH MY EYES: THIS IS CHILDHOOD CANCER SERIES
9/2: We Have Stopped Making You Aware
9/3: Through My Eyes: This is Childhood Cancer
9/3: Through My Eyes: What Cancer Leaves Behind
9/5: Through My Eyes: Behind the Scenes with Aaron Plummer, Dad to RhabdomyosarcomaWarrior
9/6: Through My Eyes: What My Child About Cancer, What Really Scares This Cancer Mom
9/8: Through My Eyes: Week 1 Results
9/9: Through My Eyes: Behind the Mind of a Teenager Fighting Cancer & Social Anxiety
9/11: Through My Eyes: What It’s Like to be a Young Adult Living With Cancer
9/13: Through My Eyes: What It’s Like to be a Young Adult Supporting a Loved One With Cancer
9/15: Through My Eyes: Week 2 Results
9/17: Through My Eyes: Behind the Scenes With Charlotte Pediatric Oncologist, Dr. Oesterheld
9/19: Through My Eyes: What It’s Like to Help Kids Understand & Cope With a Cancer Diagnosis
9/20: Through My Eyes: What I See in Kids Fighting Cancer as a Pediatric Oncology Nurse
9/22: Through My Eyes: We Are Childhood Cancer Parents. We Are Not OK.
9/23: Through My Eyes: Behind the Minds of a Family Who is Fighting a Terminal Childhood Cancer Diagnosis
9/25: Through My Eyes: How a Little Sister’s Terminal Cancer Diagnosis Affects Siblings Too
10/3: Through My Eyes: The Day That Made Me a Childhood Cancer Advocate
Through My Eyes: The Day That Made Me a Childhood Cancer Advocate
Through My Eyes is a series in which those affected by childhood cancer share a behind-the-scenes look into what it’s like to be in their shoes. Read every perspective. Become aware and donate to help create solutions for kids fighting rare pediatric cancer.
[#ThroughMyEyes | Rachel Wood] September 19, 2011… I accompanied Erin and Isabella to NYC for scans at Memorial Sloan Kettering. After a morning at the hospital we headed to Magnolia Bakery for a VIP baking experience… where this short clip above was taken.
In the clip you see Isabella and Erin baking cupcakes. What you don’t see is Erin’s shaking hands and the tears she is fighting hard to hold back. She had just stepped outside to take a call from the hospital asking her to come back to meet with the doctors right away.
On September 19, 2011 the Santos’ were told Isabella’s cancer had spread. It was in her head, bones, bone marrow, chest, abdomen… the disease was everywhere. The doctors explained that the surgeon would no longer operate and high dose chemo was not an option. The new disease in her head was bleeding and the immediate concern was swelling and seizures. The oncologist said to go home. Be with your family. Do things that make Isabella happy.
This is where MIBG therapy came in and gave 10 months of life and memories to Isabella and her family before she passed away from neuroblastoma on June, 28, 2012.
This NYC trip forever changed me. I don’t have a child with cancer and I don’t know what it’s like. But I watched it. I watched what it does, the pain it causes and the life it rips away. My eyes have been open to childhood cancer ever since.
Not everyone has a front row seat to the impacts of childhood cancer. I hope you are never given one. But that was my goal of the ‘Through My Eyes’ series, to help others open eyes, even a little bit, to what pediatric cancer is doing to kids, young adults and families. I normally spend quite a bit of time with cancer families, but the past 2 months I have spent that time asking the really hard questions, listening to the fears and pain. It has been the most rewarding yet most emotional taxing several months. I have talked, listened, planned, written & taken photos of cancer. I have lost sleep & dreamed about these kids and teens – awful dreams. I have gotten attached. But my emotional rollercoaster is nothing compared to what these warriors and their families go through every second of the day.
Thank you to those who opened up their hearts and homes to me specifically for this series. Thank you for letting me ask the really hard questions. Sharing awfully intimate details & thoughts. All to bring awareness to our supporters on what cancer has done. All in hopes that it will bring change.
On this last evening of Childhood Cancer Awareness Month, I beg of you to please not let a month or gold ribbon define awareness and action. Please continue to talk, share, volunteer, ask questions and give back.
Thank you for listening this month. We look forward to communicating how much this series raised for pediatric cancer research. If you feel moved to donate, we appreciate every penny and are humbled by your support.
Sincerly,
Rachel Wood
ISF Director of Marketing
*** THROUGH MY EYES: THIS IS CHILDHOOD CANCER SERIES
9/2: We Have Stopped Making You Aware
9/3: Through My Eyes: This is Childhood Cancer
9/3: Through My Eyes: What Cancer Leaves Behind
9/5: Through My Eyes: Behind the Scenes with Aaron Plummer, Dad to RhabdomyosarcomaWarrior
9/6: Through My Eyes: What My Child About Cancer, What Really Scares This Cancer Mom
9/8: Through My Eyes: Week 1 Results
9/9: Through My Eyes: Behind the Mind of a Teenager Fighting Cancer & Social Anxiety
9/11: Through My Eyes: What It’s Like to be a Young Adult Living With Cancer
9/13: Through My Eyes: What It’s Like to be a Young Adult Supporting a Loved One With Cancer
9/15: Through My Eyes: Week 2 Results
9/17: Through My Eyes: Behind the Scenes With Charlotte Pediatric Oncologist, Dr. Oesterheld
9/19: Through My Eyes: What It’s Like to Help Kids Understand & Cope With a Cancer Diagnosis
9/20: Through My Eyes: What I See in Kids Fighting Cancer as a Pediatric Oncology Nurse
9/22: Through My Eyes: We Are Childhood Cancer Parents. We Are Not OK.
9/23: Through My Eyes: Behind the Minds of a Family Who is Fighting a Terminal Childhood Cancer Diagnosis
9/25: Through My Eyes: How a Little Sister’s Terminal Cancer Diagnosis Affects Siblings Too
Through My Eyes: Behind the Scenes With Aaron Plummer, Dad to Rhabdomyosarcoma Warrior
Through My Eyes is a series in which those affected by childhood cancer share a behind-the-scenes look into what it’s like to be in their shoes. Read every perspective. Become aware and donate to help create solutions for kids fighting rare pediatric cancer.
- Perspective: Cancer Dad
- Name: Aaron Plummer
- Spouse: Kayla Plummer
- Daughter: Merritt Plummer
- Cancer: Stage 1 Rhabdomyosarcoma, group 3
- Diagnosed: 03.04.19
- Treated at: Levine Children’s Hospital
- Feels: Thankful
UPDATE, August 2020: We are thrilled to share that Merritt is currently in remission and there is no evidence of disease.
Aaron was featured on our social channels (Instagram & Facebook) on 9/5/19 to share what it’s like to be a daddy, husband, and provider while helping his daughter fight for no more cancer. It’s real and it’s raw… just like childhood cancer.
My Daughter Has Cancer…
“In February the babysitter went to change Merritt’s diaper and discovered what looked like small grapes coming out of Merritt’s vagina. After a visit to Merritt’s pediatrician she determined that it had prolapsed and sent us to a urologist at their other office to determine why. That urologist did a quick ultrasound and discovered a tumor in Merritt’s abdomen. After seeing the pediatric urologist at Atrium Main, we were immediately admitted to Levine Children’s Hospital where Merritt had a biopsy surgery, CT scan, and bone scan the following day.”
03.04.19 At 17 months old Merritt was diagnosed with Stage 1 Rhabdomyosarcoma Group 3. Merritt has been through several tumor removal surgeries, 10 radiation treatments, and is in week 22 of 42 weeks of chemo.
The New Normal…
“It’s so frustrating that Merritt has to see this as her “normal” life because it is far from normal for any child at her age. I have for years heard people refer to children of Merritt’s age being in their “terrible twos”. I disagree with this term because it is not terrible twos, it is a child that is trying to figure out life itself, their emotions, and why things happen the way they do without knowing how to express themselves. Now take that and throw the “cancer life” on top of that. Try having an almost two year old trying to figure out how to express the fact they don’t like being held down to have their port accessed or how awkward it feels to be put to sleep each day for 10 days in a row for radiation treatment. Having a child that is going through what most of the world sees as “terrible twos” at the same time as cancer treatment is frustrating as a parent.
And then the new normals as a parent… No parent should have to turn a deaf ear when their child wakes up screaming and crying for 30 minutes wanting milk, but can’t because she isn’t allowed to eat and drink this morning due to scans. No parent should have to be thankful that their child’s white blood cell count is good enough to go to a fundraiser to benefit them. No parent should have to sit in the waiting area at the hospital just scrolling through their phone, hoping to make the minutes of waiting not seem like hours…..even though they still do. No parent should have to sit in a post-op area just thankful to have their child back in their arms as they wake up from anesthesia, even though they are fussy with a scratchy throat because they had to have a breathing tube during their MRI. No parent should have to be extremely thankful that they don’t have to ride on the CT scan table with their child this time. No parent should have to pray endlessly for the best possible results from scans that determine future surgery and radiation, but they will not get results until Thursday. No parent should have to be so thankful for their child returning back to their “crazy” toddler self just hours after all of this.
No parent should have to ever do any of this, but this is what has become our new normals. No parent should have to we know that there are others out there that haven’t had days as good as ours along their journey.”
The Necessary Evils of Childhood Cancer…
“The toll chemo drugs takes on Merritt’s little body is awful. The worst has been the chemo burn she gets in her diaper area after certain drugs. Not being potty trained makes it to where we have to change her diaper every 45 minutes for 12-24 hours after chemo to keep it from burning her so bad. It gets so bad at times that one week we went through 14 tubes of Desitin diaper rash cream and 4 tubes of prescription diaper rash cream.”
On average Merritt has had a fairly smooth treatment process with little sickness. This day during Chemo week 20 brought vomit and many tears over port access. Imagine physically holding your child down screaming & crying “Daddy Move” while nurses are trying to access the port for chemo. Many parents can explain to you about the heart breaking moments involved in getting their child to comply with their cancer team. The memories of pinning them down will never fade.
The Juggling Act
“Family, work, life and cancer… juggling everything is exhausting. I am lucky enough to be able to have a work place that is willing to work with me and allows me to be with Merritt at every single treatment and any specific day that is affected by her treatment. But it is hard to go to work on days that are not affected by it because no matter what… Merritt is always in the forefront of my mind no matter what I am doing.
We are good about going with the flow and taking things as they come but not having control of your life and a lot of what you are able to do is hard. Your entire life revolves around numbers like hemoglobin and ANC and things like constant sickness for weeks at a time. So just having to see that controlling Merritt’s life and what she can and cannot do would have to be the hardest part.
Chemo days are the days that the average person doesn’t realize that even when the chemo Merritt receives only lasts for 1 hour that day… it still makes it a 6 hour day round trip from the time we leave the house until the time we get home…and some days the chemo itself lasts for 7-8 hours when we get to clinic at 8 am and are leaving around 4. Non Chemo days I work usually 10 hour days. I luckily work local, 12 minutes from our house, so if I were needed for anything I could be there fairly quickly. I usually get off work around 3:30 or 4:00. When I get home I first spend a little time with Merritt before taking care of things around the house like mowing the yard, changing the oil in a vehicle, or a long list of other things needing to be done. I then come in and fix dinner. I like to do this because I know even though I have worked all day, taking care of Merritt can be just as much if not more tiring for my wife. We then eat dinner and then usually play outside with Merritt before going to bed.”
Thankful…
“When you turn on the news, open the newspaper, or read through your social media you see a lot of negative in the world today… but there are still A LOT of good people in the world. The number of people that we don’t even know that recognize what Merritt is going through and they do what they can do or what they are led to do to show their support for her and us. Whether its an encouraging word or letting us know they are praying for us or anonymously paying our bill at a restaurant. Even just now, 175 miles away from home sitting in a restaurant eating breakfast and the waitress comes up and tells us that someone has taken care of our bill. It is very humbling to know that there are so many good and caring people out there that just want to help in any way that they can. I am so thankful not for the fact that my daughter has cancer but for the fact that we do have Merritt here with us. We are able to fight with her to beat this because we know there is a reason for everything and we are seeing this make differences in the lives of others.”
Dear Merritt…
Dear Merritt… aka Fuzzy,
I love you more than anything and everything on this Earth. I will never forget that first time that I laid eyes on you and got to hold you in my arms. That was the best feeling ever. It was at that point on that Friday afternoon on September 8, 2017 that I knew God had big things in store for you for your time here on this Earth. Little did I know just how BIG they were. You have always been the most fun loving kid I have ever seen. You have always been able to put a smile on everyone’s face that you come into contact with and if they get to see you dance their smile becomes bigger than your smile. I did not begin to learn the magnitude of big things you would do until that Monday morning of March 4, 2019 in Dr. O’s office. The last thing that I wanted to hear come out of Dr. O’s mouth was that dreaded “C” word as he informed us that you had cancer. You have become the strongest person I know. I know it sounds crazy because I am the one that you call for to get the stool so you can watch your fishys and the one that is there to do whatever you want. My strength is miniscule to yours. It has been tough from my eyes to see you going through what you have gone through, but your strength through it all is what has given me my strength to do the things for you. Being able see you up and playing within hours after everything, whether it be surgery, chemo or radiation, has been what has been the drive to my strength. My strength throughout the journey with you has made me stronger but still no where near as strong as you. You are truly amazing. You have also touched the lives of so many others, from ones that see you every day to many that have never met you. Your smile, your love of life and everything else about you has affected so many people. Just being able to see your smile and seeing you dance with what you are going through has made a lot of people realize that the things they are going through in life are minor compared to what you are going through and your attitude is so much better than theirs. I have no doubt that this is just the beginning of what God has in store for you. You have a very bright future. I am thankful that God chose me to be your daddy, I am lucky and honored. We will get through this together and this has made us all stronger. Always remember that no matter what you will always be my solid rock to lean on.
Love always and forever,
Daddy
If you are a dad reading this and your child has cancer, we applaud you. It is so hard to do what you do to stay strong for your family. Thank you to Merritt’s dad for giving us a glimpse into being a daddy, husband, and provider while helping his daughter fight for no more cancer. This is childhood cancer. Are you aware now?
Photos courtesy of Aaron Plummer. You can follow Merrit’s journey with rhabdomysarcoma on his Instagram account, @FightingWithMerritt
*** THROUGH MY EYES: THIS IS CHILDHOOD CANCER
9/2: We Have Stopped Making You Aware
9/3: Through My Eyes: This is Childhood Cancer
9/3: Through My Eyes: What Cancer Leaves Behind
