Adelina has always been a happy and energetic child. In early 2023, we felt she had never-ending cold symptoms and after taking her to the pediatrician multiple times, they brushed it off as normal. Fast forward a few weeks, Adelina began throwing excessive tantrums in which she would intentionally hit her head against hard surfaces. This led to petechiae & bruising popping up on her face, which ultimately caused concern for us (parents) and we took her to the ER. She was diagnosed with AML on May 30, 2023.
Adelina has successfully completed 3 rounds of chemo treatment. Each round has been different from one another. She has received 2-3 chemo drugs over several days with each round. At the end of each round, she has an EKG and ECHO done, along with a Lumbar Puncture & Bone Marrow Aspirate. This doesn’t include all the other meds she receives daily to prevent infections.
On the few days we do get to spend at home between rounds, Adelina is mostly sheltered. We sometimes see our immediate family as long as no one is sick, but she also can’t be in crowded places or visit the local playground. When we’re impatient, she does not get the opportunity to play with other kids because all the kids on her side of the floor are immunocompromised.
Everything has changed. Being that we spend 4 to 5 weeks living at the hospital, we don’t get to create new memories or start new traditions with our daughter. Her diagnosis has also paused us to continue to grow our family. While we should be taking the time to focus solely on her, both Dad & I still need to work to pay our regular bills & now the additional medical expenses that we never anticipated.
Chemo has dimmed so much of her positive light. She used to laugh & smile all the time, but now we fight just to get a smile out of her. Adelina loves her cousins, and whenever she sees them – she lights up and laughs at everything. She loves to climb & explore, absolutely loves the outdoors, she enjoys playing with toys that she can pull apart or build back up. More than anything, she loves water! But because of her broviac, she can’t get wet. She loves to play guitar like her dad and sing, even though we have no clue what she’s saying.
Melissa was diagnosed this year on January 20th with Leukemia, at the Emergency Room, but was later described as having High Risk Acute Myeloid Leukemia. Melissa donated blood at her school’s campus before and in January it would be her second time and she was super excited since she would be earning a chord for her graduation gear. She completed the donation on a Wednesday and by Friday she got a call to immediately for to the ER because they were worried her labs came back with cancerous levels. Symptoms were not noticeable and the only one she could think of was being extremely tired, but she shrugged it off since she was working a lot. But once getting information on other mild symptoms she checked off a lot of them.
She has gone through 3 rounds of harsh chemo with every cycle being around a month in-patient. However since she was considered high risk, her only option for cure was a bone marrow transplant. Thankfully her brother was a perfect match and we have had a lot of ups and downs but we’re happy that we are together as a family finally. But we have faced a lot of difficulties with me and Melissa having to give up our jobs losing a source of income and the distance to the hospital being large so gas has always been our issue.
We were separated for months at a time but we have all been so much closer, closer than ever we don’t want to miss a single second and we all love to have fun, especially with the new addition to our family, my first granddaughter, Mila.
Braelyn was diagnosed on May 30, 2020, on her 3rd birthday. She unfortunately relapsed in June of 2021 and received a bone marrow transplant in Oct 2021.
She did great after treatment the first and second time but unfortunately after her bone marrow transplant in 2021 she suffered a brain injury in December of 2021. She lost her ability to walk, talk, eat, or even sit up on her own. She is now in a wheelchair and also in kidney failure due to the treatment. She does dialysis 3 days a week in addition to 3 days a week of therapy. She will need a kidney transplant but will not be eligible until she is in remission for 2 years.
Her cancer diagnosis changed everything. We had to relocate to be closer to the hospital and she now has lifelong health complications.
Braelyn has been fighting for so long and has accomplished so much that I want to celebrate her! She has been in such a good place since getting discharged last year to even think about this but I think now is the time to celebrate the wins and be proud of where she is now!
Bryli has always gotten sick more than the average kid so it wasn’t concerning to her docs like it would have been for a “typical” kid. She started getting petechiae when she would vomit. Something she never had previously. She said she was tired more and had a sudden onset of severe sleep apnea. The final straw was I felt her coloring was off. I took her in for blood work to just check and make sure everything was okay. They called within an hour of her blood draw and said get her immediately your daughter has cancer.
She was on life support for the first couple weeks of her battle and remained in the ICU for a month and a half. She has had just under 100 blood and platelet transfusions. She’s had multiple lumbar puncture surgeries, back biopsies, a lung biopsy involving a lung surgery, a bronchial surgery, leg surgery, a picc surgery, and central line surgery. She had to be hospitalized for her entire 6 months of treatment in an isolation room. She is doing great and is currently in remission. The hardest part I think now is the PTSD for everyone.
We’ve had constant anxiety while putting on a positive and brave face. For her, she is scared of any slight pain or off feeling. She is always afraid of being sick. She gets really upset when kids call her a boy or look at her differently. I went 6 months without my other children while I stayed exclusively in the hospital with Bryli. Joe stayed for 4 months until she was more stable and went home with our other girls. Then of course the more obvious one is financial hardships. No savings left and finding a job that accommodates appointments and caring for her has been really tough.
She has clawed her way back and overcame several obstacles! She is a fighter though and is now in remission. I am so proud of her and so thankful for her every day!
Nevaeh was diagnosed with Acute Myeloid Leukemia at 12 months old. Prior to diagnosis, Nevaeh was experiencing high fevers, lack of appetite & no energy for two days before I decided to take her to the ER. She was then swabbed and tested positive for COVID along with pneumonia. We were discharged and told if she worsened to take her back in.
The following day, January 26, 2022, Nevaeh was rushed to the hospital for troubled breathing and a high fever of 104, she was admitted for what we thought was an overnight stay, wrong!!! On January 28th, Nevaeh had “blast cells” appear in her blood, she was closely monitored for 3 days before being discharged to meet with an oncologist within a 2-day frame. February 2, 2022, Nevaeh woke up with her temples extremely swollen, we were just a few hours short of meeting with the oncologist. By late afternoon we had an official diagnosis Acute Myeloid Leukemia FLT3/TKD – KMT2A/MLLT3.
Nevaeh has gone through 56 doses of high-dose intensive chemotherapy, 18 blood transfusions, 11 platelets transfusions, 8 bone marrow aspirations & lumbar punctures, EKG, CT scans, MRI, ultrasounds, hair loss, neutropenia, immunocompromised, X-rays, coding once, sepsis, chemo rash, tachypnea, surgery, physical & occupational therapy, 29-35 inpatient hospital stays with a one week break given at home in between each cycle, totaling 5 cycles 6.5 months long before being declared cancer free and in remission, ringing the end of treatment bell August 15, 2022.
Although she is no longer in active treatment she continues to go to the clinic for monthly labs and has recently started seeking treatment with various specialists. (Audiology, Ophthalmology, Pulmonologist, Dentistry, Psychiatry, Allergist & Physical therapy)
Since the start of diagnosis, we had little to no help from family and friends. We were left facing this journey with our daughter on our own. The thought of losing my daughter to such an aggressive & rare leukemia found in children is gut-wrenching. She deserves more than what this life has given her.
Cancer diagnosis has changed our lives. My family fears the thought of Nevaeh relapsing and us having to be separated again. I fear for what the future holds for us as a family. I grieve what our life could have been like if there had never been a cancer diagnosis.
