Just prior to her eighth birthday in October 2015, Niamh (pronounced Neve), was diagnosed with acute lymphoblastic leukemia (ALL). The first symptom appeared in April 2015, when Niamh developed a large lump on the top her head. In August, a second lump appeared behind her left ear. Niamh’s doctor at that time informed us, “There is nothing to be concerned about and it is not cancer.”
Then in September, Niamh started to experience headaches and we immediately brought her to Hackensack University Medical Center (HUMC). Following a biopsy it was confirmed that Niamh had ALL. On the day we entered the clinic to discuss treatments, Niamh was escorted to the play room. She looked around then said, “why don’t the children have hair?” She looked at us and she knew nothing more needed to be said. When we finished speaking with the doctors, Niamh handed us a picture and said “Life is Full of Sunshine, Rainbows and Butterflies”.
Since her diagnosis, Niamh has never wavered, even in her darkest days. She continued to be a happy child who loved hanging with her friends and wanted so much to go back to school and play soccer.
In her own words….“When you have cancer your life changes, in the worst way. Cancer stole my hair, my school, my ability to be my carefree self, but cancer did not steal my beautiful smile, my positivity and my ability to see the good in everything. Instead of being a “normal” 7, 8 and 9 year old kid, I was at hospital for chemo, blood work, needles, IV’s, spinal taps and bone marrow aspirations. My friends were there for me but it was hard to have play dates in case I would get sick.
I have now completed my treatments, but, it’s really important for people to know that Cancer for children is a lifelong diagnosis, first we have to survive the cancer treatment, and then a lifetime of late effects.” I am aware that there will be lasting side effects of all these poisonous chemo which I have ingested, however, I try not to think of the future, right now I am thankful for every day and I take one day at a time.”
Aryeh is resilient, empathetic and brave. He likes baseball/basketball, video games and going on hikes.
When Aryeh was two and half, he was pale and under the weather. We were advised by his daycare to take him to the doctor. His doctor noticed multiple indicators of a blood disorder and told us to go to Sick Kids immediately. We were immediately admitted and received his diagnosis of ALL.
He was put on treatment right away. He has had blood transfusions, operations, chemotherapy and received a port.
We are still dealing with the emotional and financial repercussions of his treatment. Cancer has changed our kids’ childhood, impacted both our careers, drained all savings and altered our outlook on life but ee are eternally grateful to all who helped Aryeh.
Eva began falling just out of the blue. The first time was in June. My oldest daughter called me at work and told me Eva was on the floor screaming because her back just gave out on her and she fell. I rushed home and took her to urgent care, where the doctor didn’t do any tests at all, just said that she had an anxiety attack and sent us home.
Over the next few months, we went to pediatrician, ER- at least 4 times and never any blood-work or X-rays taken. The last time Eva fell I had to call 911. The ambulance took her to the ER and there, the doctor said it felt like muscle spasms and sent us to a chiropractor. I made an appointment that day.
As soon as Dr. Bentley looked at Eva, he said no way am I touching her. She was pale and her stomach very distended. From there, he sent us for an abdominal ultrasound. The ultrasound showed her liver was inflamed and her spleen enlarged. He called me and told me to come by his office and pick up a copy of the report and get her to the ER as soon as possible.
I took Eva straight to ER, where we waited for 9 hours before they began any testing. Only after an hour, I received the news that it was Cancer. 5am in the morning, all alone to hear this news that my child had Cancer. It had attacked her spine and she had 10 spinal compression fractures. She was walking around for months with 10 spinal compression fractures. That was the worst day of my life.
Tests were run and she was admitted. Leukemia (ALL) would be the word that we would here a million times..it still doesn’t feel real.
Eva is now in remission, we have to do chemo though until December 18, 2019 and pray she doesn’t relapse. Chemo is very hard on her. She has had about 180 treatments so far. Eva gets very sick..but pushes through it everyday with determination. Although this disease has controlled every part of our lives, it has brought us all closer. For that..we are thankful.
Nik is an amazing young man, he faces fear head on and never backs down from a challenge. Nik is a great big brother, always looking out for his siblings, and always willing to help anyone who needs it. He reaches out to the younger cancer kiddos and tries to make them smile and reassure them. He loves Harry Potter and NASA and space. He is great at computer programs and loves to code. He is not shy and loves speaking in public and sharing his testimony. He love bringing awareness to the Childhood Cancer community.
My son was diagnosed with Acute Lymphoblastic Leukemia Tcell on 11/11/16. He was 10 years old and in his 5th grade year of elementary school. He spent the first few months of his diagnosis in the hospital in immense pain with infections and nasty side effects from the chemo. His body seized up twice and at one point he had 4 different infections. His first year was an intense fight. It took 12 months rather than the standard 6-9 to get him to maintenance, he had to have many breaks from chemo to let his body heal and recover, but he fought his way through it all with a brave heart and a smile on his face.
Nik has had 2 surgeries, more bone marrow biopsies than I can count, he gets poked with a needle every two weeks to have labs drawn, he is on chemo every day and higher doses every Friday, he has to have a lumbar puncture once a month to administer chemo into his spine. He’s on many different medications including antidepressants and antibiotics. Now that he is on maintenance he has more energy and is able to go out more, he has less doctor appointments, and is more active. We all have PTSD from the journey but we lean on each other for strength.
We have all changed our lives around because of Nik’s diagnosis, however we are glad to do it. We believe in the mantra One fight One family. We all stand with him and fight with him. This past year I homeschooled all of our children so that no one was left out or alone. My kids stick together and love their brother with all of their hearts. We are stronger together.
Holley is a very out going young lady and she says whatever is on her mine. She loves to fish with her dad but also loves her dresses.
When Holley was 3 years old, she kept getting sick cold like symptoms. She would be sick then all of a sudden throw up and run fevers. Then not have any symptoms for a day or two then right back to being sick. She was also losing weight. I took her in to her doctor. At that time, they said that her blood work looked fine, other then she has a little elevated white blood count but nothing to be worried about.Six months later, we still needed answers. I made them re-take a CBC and that is when she was diagnosed with Acute Lymphoblastic Leukemia.
She started her chemo treatment plan along with many spinal taps. We struggle with it every time. To see your little girl go through this is heart breaking.
Our family has been turned upside down. Holley’s dad and I split after her diagnosis. I am not able to work due to medical demands of my cancer child. So I am a stay at home mom getting limited social security for her and child support for income. Cancer has changed my family physically, emotionally, and financially.
Holley is a very strong little girl that has gone through so much! She always smiled even when she was so sick she could not get out of bed. She is my hero!
Kelcey diagnosis was very sudden. At end of February, Kelcey started with right thigh pain, weakness and her leg giving out. The following week it happened on the other leg. I took her to her pediatrician who did blood work revealing she had leukemia.
She had multiple severe complications in which she was in the hospital 12 days and then 35 days. She ended up with a bowel surgery to remove 35 cm of dead tissue and place an ostomy.
Needless to say this was an extremely challenging time for our family. My son who turned 5 during all of this was so good about everything. He adjusted to change of schedule and lots of hospital visits.
Kelcey overall has processed alright. She does not truly understanding everything that is going on. This diagnosis has significantly effected our every day life. Schedule changes, hospital visits and income changes have been the most notable.
