Addi was a very small baby. The doctor always said she had failure to thrive and said she couldn’t poop. After fighting with the doctor for a treatment plan for that, Addi then begin to stop eating, She got nose bleeds constantly and stopped walking. I took her to the children’s ER and they said there were signs of infection in her blood. This led them into thinking she had arthritis. We saw a specialist for that and that doctor said she did not have arthritis. So we were back at square one.
They ended up discharging her and said we just needed to follow up with her pediatrician. Then Addi had a big lump show up on her neck. I took her to the pediatrician who then told us she just had a swollen lymph node and sent her home. She just kept getting worse and worse as the days went by. We took her to see the oncology team and they did blood work and her CBC came back abnormal. They tested her for different types of blood cancers and those came back negative. We were back to square one, once again.
Two weeks later, Addi wouldn’t wake up. I rushed her to the doctor’s office, where she saw a new pediatrician, and she walked in, looked at Addi, and said “I will be right back. I’m calling the hospital and letting them know you are on your way, Don’t leave until you have answers.” That’s when our world got dark and scary.
We got to the ER and they did an X-ray where they saw an abnormal shadow. Then they did a ct scan and that’s where they saw all Addi’s masses. They admitted her right away and ran more tests. A few days later, they confirmed our worst nightmare, our sweet 2-year-old has stage 4 high-risk neuroblastoma.
They proceeded to tell us that there is a high chance we would lose our sweet girl. They started treatment to give her a fighting chance. The nurse told us that she was the worst case they’ve seen.
Addi went through 2 1/2 years of treatment. She beat all the odds. After two years of fighting with the pediatrician to figure out what was wrong with her, the doctor misdiagnosed her, and not caring if Addi was getting better – we got our baby girl on the right track.
Addi still has 5 masses left and is currently being monitored. She is thriving and doing great!
In October 2020, I had another baby girl and she got diagnosed with neuroblastoma as well. Thankfully they were able to do surgery to remove hers and she’s in remission. Addi unfortunately isn’t in remission yet.
Paisley’s diagnosis happened fast. She had zero symptoms except for the day before being diagnosed. Her tumor was in her abdomen and when that thing started to grow, it grew quickly. Her belly had a hard spot and she began to feel tired a weak.
She has had 5 rounds of chemo, 2 rounds of high-dose chemo stem cell transplant, 12 rounds of radiation, and 4/6 rounds of immunotherapy. Due to being back and forth from the hospital, I am not able to work which has brought some financial struggle.
She is the sassiest, funniest, and most loving child. She will make your belly giggle so hard you can’t breathe. She will always put sass against you and make sure you know it’s her world we just live in it.
In the fall of 2018, Eleanor had pain in her legs and began to want to be only carried a lot. Ellie has had two years of chemo and immunotherapy including two stem cell transplants. She has also received multiple forms of high-dose radiation as well as surgeries throughout her treatment.
Ellie is now in REMISSION as of December 2020! She still suffers side effects, with some being lifelong, but she is happy and healthy today and we look forward to the future.
Tripp was diagnosed with Neuroblastoma in July 20202 at 11 months old. The week prior to his official diagnosis he was sleepier than usual, his tummy was firmer, and he wasn’t having as many wet diapers. It all happened so quickly. We noticed drastic changes on Wednesday/Thursday and by Friday he was diagnosed.
My husband and I find that we are a bit more anxious than before the diagnosis, but Tripp is a happy and active kiddo. Managing medication as well as feeding tube feeds is definitely a change, but we try to keep things as normal as possible.
Tripp has been through a lot in his first two years of life. We are so proud of him and how he has handled everything so far. He is an extremely special kid and we can’t wait to see what he accomplishes in his life.
Johan was diagnosed in January 2020. He woke up one day with high fevers and fatigue. Due to COVID, we were asked to wait it out before going to the doctor. Once he was seen, a scan was done and confirmed pneumonia. The scan also showed a large mass in his chest which was confirmed later to be Neuroblastoma.
We have learned to be precious with time and our family. We have had to adjust our schedules, or home environment, where we go, and what we are able to do because of COVID exposures and Johan’s compromised immune system.
Johan has been through 18 rounds of chemo. Our son is on hospice care now. He has battled his cancer for over a year and unfortunately, his cancer keeps coming back.
Rose was diagnosed with stage 4 neuroblastoma in October of 2018 and she relapsed in July of 2020. She is still battling her relapse. Rose all of a sudden stopped eating at the beginning of October. She lost a lot of weight in two weeks and had bad head pains.
She’s had 23 cycles of chemotherapies, proton radiation, tumor resection surgery, 17 cycles of immunotherapy, and 2 cycles of MIBG therapy.
It has completely changed our way of living. The little things that people take for granted we cherish. Everything revolves around the hospital and treatments. We have to protect Rose from the public when her counts are low. She doesn’t get to be just a normal kid.
