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Gold Ribbon Hero: Kashton

Tag Archives: Acute Lymphoblastic Leukemia

Kashton was diagnosed with acute lymphoblastic leukemia in November of 2020. Doctors initially thought it was the stomach flu but finally discovered that it was ALL after three months. Currently, Kashton is on a daily chemotherapy medication and attends monthly clinic visits every month. His mom said, “throughout this entire ordeal, Kashton has been so resilient, brave, happy and strong. He understands that his chemo is the medicine that is making him better.” Kashton and his family look forward to treatment completion in 2023.

Kashton is an ambassador for ACCO’s GO GOLD® the RUN. Learn more by clicking here.

 

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Meet Noah, a 5 year old ALL warrior. Noah plans to attend the University of Tennessee when he grows up to learn how to be Spiderman. He loves jiu-jitsu, soccer and t-ball.

The following is a story told by Noah’s mother, Martha.

“On June 27th, 2018, our three and a half-year-old son, Noah, began falling and complaining of pain in his left leg. He also was having severe stomach pain and labored breathing, so we went to our pediatrician’s office and were placed on prednisone. Three days later, we went to the ER and were admitted for testing and observation. I asked the ER doctor if Noah could have some form of cancer and since all of Noah’s tests and labs came back normal, she “promised” me Noah did not have any type of cancer. Unbeknown to us, the steroids had falsified his labs. For the next four weeks, we were back and forth at different doctors trying to figure out why Noah continued to have difficulty walking, labored breathing, severe abdominal pain, intermittent fevers, nose bleeds, and the need to sleep all the time. One Sunday afternoon, as Noah was once again with a low-grade fever and wanting to nap, I asked him what was wrong, and he responded with, “Mommy, I am very sick. You have to help me.”

Finally, Noah’s second GI panel came back abnormal, showing that he had bacterial overgrowth. This led us to a GI specialist who ran blood work on baby Noah. The next day, July 24th, 2018, our GI specialist called and said all of Noah’s labs were abnormal. She said there was no way his labs could be this abnormal and that she thought the test was skewed. I asked her if he could have some form of cancer, and she said, “If these labs are correct, then I am very concerned for his health.” She sent us to the ER to be retested. Before I called my husband at work, I looked up every abnormal lab that she had mentioned. His platelets were at 9,000, his neutrophils were at zero, and his white and red blood cell count was low. Every abnormal lab I looked up said, “leukemia.”

That night, in the ER, as we waited for our results, we heard the doctor outside the door take a deep breath and say “ok” as he opened our door. Before he could even speak, we asked him if Noah had leukemia, and he said everything was pointing in that direction. He said it could still be a virus, but that a hematologist would be down to see us. Twenty minutes later, Dr. Spiller came into our room. We asked her what kind of leukemia Noah had, and she said it appeared he had Acute Lymphoblastic Leukemia. Everything was confirmed the next day, July 25th, at 3:00 pm.

We began grieving for the loss of our healthy child and began coping with now having a child with cancer. At first we were in shock and afraid, then we became sad, angry and anxious, and finally, we became numb and accepted the fact this was our new normal.

We never realized how hard our journey with leukemia would be. We were in shock to know our baby had leukemia and then devastated when he became high risk to relapse due to an elevated MRD on day 8. Noah had instant complications. From hypertension to tachycardia, to a pericardial effusion, and a staph infection in which his port was removed, and a PICC line was placed, everything was spiraling out of control. Noah even reacted to the plasma in the platelets which landed him in PICU. Noah’s journey was difficult from the beginning. He ended up losing 15% of his body weight on steroids and needed a feeding tube for three and a half months. He also developed severe neuropathy in which Noah was bedridden and could only move his eyes. He was unable to walk for two and a half months. At one point, he was the sickest child on the oncology floor and one of the hematologists called him the “mystery ALL child.” If it could happen, it was happening to Noah. Every day was a new crisis.

With a total of seventy-three nights spent at East Tennessee Children’s Hospital, 13 blood and platelet transfusions and one IVIG, four new ports, and multiple dangerous reactions to several chemos, we are still in remission and in the maintenance phase of treatment. We are now doing well and will finish chemo on 11/1/2021.

Although there have been many difficult days, we turned our negatives into a positive by creating the #NoahNation Foundation via the ACCO’s Founding Hope program. Being inpatient so much, we saw a need for medically adapted pajamas. Kids undergoing chemo needed special pajamas that have easy access to their ports, tubes, and drains. We saw kids fighting cancer in dress shirts because the button down tops allowed for this easy access and Noah was always fighting in a Pull-up.

As a result, “The #NoahNation Foundation” was formed to create warrior and warrior princess medically adapted pajamas. Pajamas are altered using Velcro’s, snaps, and plastic zippers so that children can fight cancer in comfort. These pajamas are metal-free so that the children can have tests done while in these pajamas. Our goal is to bring dignity and comfort to all cancer kids undergoing treatment. As of today, over 400 pairs of medically adapted pajamas have been gifted to children battling cancer.”

The #NoahNation Foundation is one of ACCO’s Founding Hopes who work to help serve their community by providing pajamas adapted for kids with cancer. Follow Noah’s story on Facebook @SavingBabyNoahfromBCellALL

 

 

 

 

 

 

 

 

 

 

 

Learn more about ALL: https://www.acco.org/blog/about-childhood-leukemia-detection-and-diagnosis-2/

Together, we can make a difference.

Donate today… because kids can’t fight cancer alone®.

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GRH JerichoMeet Jericho, a 4 year old B-Cell Acute Lymphoblastic Leukemia warrior.

At just 3 years old, Jericho was experiencing a swollen, bruised and spotted stomach accompanied by fevers, so his parents took him to the doctor. The pediatrician sent the family to the emergency room. His parents suspected some sort of infection but when doctors and nurses started running additional tests, they knew it wasn’t just an infection. Tests were completed overnight and the next morning doctors confirmed the leukemia diagnosis. “Our world collapsed, it changed our lives completely. We were devastated, terrified and deflated. We felt crushed for a while, then accepted it. We were ready to kick cancer” said Jami, Jericho’s mother.

Treatment began immediately with weekly chemotherapy treatments and physical therapy for the next three years. In his first month of treatment, he had a picc line placed which is now a port implant. “We were bombarded with medicines, schedules, routines that we must keep, words that we had no idea what they meant or how to properly say some of them, nurses, oncologists, anesthesiologists, child life specialists, chaplains, and all other forms of hospital staff,” remembers Jami.

Jericho has had several lumbar punctures and had a very serious allergic reaction to PEG chemotherapy. Jericho went into anaphylactic shock and received compressions for 27 minutes before regaining consciousness. On the way to the PICU he went into cardiac arrest and received compressions for an additional 13 minutes before regaining consciousness for the second time. Doctors confirmed there was no sign of brain damage so they unhooked him from monitors. Last July, Jericho’s parents decided to shave his head after several handfuls of hair began to fall out. He was so upset, but in December of 2019 his hair began growing so fast, it needed a trimming!

A year into his battle, Jericho is four years old, full of life and happiness. His family helps him celebrate small victories and make the most out of every day. He loves spending time with his family and playing with his brother, Jamison. He loves to swim, play outside, play with friends in Sunday school and play on the swings.

Follow Jericho’s story on Facebook @MarchingAroundJericho.

To learn more about Acute Lymphoblastic Leukemia, go here.

Together, we can make a difference.

Donate today… because kids can’t fight cancer alone®.

NOMINATE GRH
Donate to ACCO

grh haven copy

Meet Haven, a brave cancer warrior that was taken too soon. Haven fought a long battle with B-cell acute lymphoblastic leukemia (ALL) for almost five years with a smile on her face and concern for people around her. 

At just nine years old, Haven was experiencing fevers and swollen lymph nodes. On April 24, 2015, she was diagnosed with B-cell ALL. “We went to get blood work to see why she was having fevers and we were in utter shock hearing the word ‘leukemia,’ ” remembers Haven’s mother, Magan. Haven’s parents were fearful and heartbroken but Haven remained positive with a “let’s beat this” attitude.

Treatment started almost instantly and Haven received two and a half years of chemotherapy. She had a port placement and removal as well as a hickman placement and removal. Haven went into remission for 15 months and then relapsed again. This time, treatment consisted of four months of chemotherapy and a bone marrow transplant which resulted in Haven going back into remission for seven months. On December 20, 2019 Haven relapsed and sadly passed away on January 7, 2020. 

Haven was very strong. When she relapsed the first time, she told her mom that ‘at least it was her and not someone who couldn’t handle it.’ One of Haven’s favorite things to do was cooking and she always wanted to feed everyone. Haven asked that her family help feed other families on the oncology floor during the holidays in honor and in memory of her.  “Even on her deathbed, she was still worried about everyone else and was not scared. She was at peace knowing that her life would soon come to an end,” Magan said. Days before Haven passed she said that she was grateful that she had received the bone marrow transplant since researchers could learn from her story. 

To learn more about ALL: https://www.acco.org/childhood-leukemias/

To nominate your own Gold Ribbon Hero: https://www.acco.org/gold-ribbon-heroes/

Together, we can make a difference.
Donate today because kids can’t fight cancer alone
®.

Donate to ACCO

About American Childhood Cancer Organization

The American Childhood Cancer Organization was founded in 1970 by parents of children and adolescents diagnosed with cancer. As the nation’s oldest and largest grassroots organization dedicated to childhood cancer, ACCO is committed to shaping policy, supporting research, raising awareness, and providing free educational resources to kids with cancer, survivors, and their families. Additionally, ACCO is the sole U.S. member of Childhood Cancer International (CCI) and has helped support more than half a million families over the past 50 years. Help make childhood cancer a national health priority because kids can’t fight cancer alone®

For more information about how ACCO can help your family, call 855.858.2226 or visit:

 

Ceci’s Cancer Journey

“Ceci is a strong and brave little girl with an amazing heart and mind…Ceci is our inspiration to keep moving forward with a positive heart.”—Reyna, Ceci’s Mom

14699940_1798124370445541_1881105782_nToday, we’d like to introduce you to Cecilia Amelia, or “Ceci” for short, a strong, brave three-year-old with, as her mother proudly states, “an amazing heart and mind.” Ceci began treatment for Acute Lymphoblastic Leukemia (ALL) in May, at the tender age of 2 years and 8 months. She is nearing the end of the consolidation/intensification stage of her treatment, with the final, most intensive rounds of chemotherapy scheduled for late November and early December. If these treatments go as planned, Ceci will begin two years of maintenance therapy in January.

Ceci and Her Siblings: The Wider Impact of Childhood Cancer

“I have stopped working to take care of Ceci and attend to her needs. My husband Jose and I have four other children to care for. It has become very difficult to maintain a healthy family routine and a stable economic situation.” —Reyna, Ceci’s Mom

It’s not really fair that we have named this story “Ceci’s Cancer Journey”; it should really be called “Ceci and Her Family’s Cancer Journey.” Because childhood cancer impacts entire families: parents, grandparents, and especially siblings. Ceci is the fourth out of five children in her family and the impact of Ceci’s diagnosis and treatment has been as difficult and as challenging for her siblings as it has been for her, albeit in very different ways.

20160715_105054As Reyna so clearly notes, “when a child falls sick, sibling(s) too experience a roller coaster of emotional and behavioral responses to the advent of the illness.” Siblings, especially young ones, may not understand why Ceci is so sick all the time, why she must spend so much time away from home in the hospital, why they cannot visit her, and even why she looks and acts so different. They are worried and scared, yet all too often are unable to clearly articulate these feelings in ways adults can recognize or understand.

Siblings can also find it very difficult to cope with the drastic alteration of routines and norms that fighting childhood cancer often requires. Ceci’s siblings feel lonely and neglected as parents, extended family, and friends dedicate their time and attention to the sick child. The extended absence of one (or even both) parents as they attend Ceci during her hospital visits can lead to confusion, anger, anxiety, and behavioral issues. Even the financial strain that childhood cancer puts on many families can be felt, if not understood, by some siblings in subtle yet challenging ways.

ACCO Can Help Siblings Too!

As Ceci’s parents know all too well, explaining childhood cancer and all it entails to siblings can be an enormous challenge. Ceci’s family, in their updates and appeals to family and friends, have reminded their supporters that Ceci’s four siblings needs as much love, attention, and support as Ceci herself. And ACCO can help as well; our resources are designed to help parents understand and cope with the impact of childhood cancer on siblings, while other resources are directed at “sibs” themselves. Oliver’s Story, for instance, is geared for siblings aged three to eight. Written from the perspective of a six-year-old, this engaging, informative story addresses the many questions siblings have about childhood cancer, as well as offers some advice for siblings on how they can support their brother or sister during this difficult time. Oliver’s Story is available in both English and Spanish, and like all ACCO resources, is available free of charge to families, like Ceci’s, who are battling childhood cancer.

More about Childhood Leukemia Cancers:

Learn More About the Different Types of Childhood Cancers:

About the American Childhood Cancer Organization

The American Childhood Cancer Organization (ACCO) is a non-profit charity dedicated to helping kids with cancer and their families navigate the difficult journey from cancer diagnosis through survivorship. Internationally, the ACCO is the sole US member of Childhood Cancer International (CCI), the largest patient-support organization for childhood cancer in the world. Here in the United States, the ACCO promotes the critical importance of ensuring continued funding into new and better treatment protocols for childhood cancer.  And most importantly, the ACCO is focused on the children: developing and providing educational tools for children fighting cancer and their families, empowering them in their understanding of childhood cancer and the medical decisions they must make during this difficult journey. All of ACCO’s resources are available free of charge for families coping with childhood cancer.

For additional information about childhood cancer or on the ACCO, or to order resources for you or your child, please visit our website at www.acco.org.

To submit a Gold Ribbon Hero’s story, please Click Here

For additional information about childhood cancer or on the ACCO, or to order resources for you or your child, please visit our website at www.acco.org , call 855.858.2226 or visit:

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