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.
Noah loves to joke around, he finds humor in everything and even hides his pain through humor. He has a beautiful girlfriend and he is a team captain of his basketball team and loves basketball.
Noah was diagnosed with Acute Myeloid Leukemia in March of 2022. In the time leading up to his diagnosis, Noah had a weight loss of 30 pounds, fatigue, shortness of breath, headaches, and fevers.
We have 30-40 day stays at the hospital for inpatient chemotherapy sessions. Due to treatment, Noah tires more easily than he used to. I also took off personal leave to be here with my son 24 hours a day and we only get to go home for 5 days between his 5 treatments sessions.
Emery loves to play peek-a-boo. She is a happy and bright baby who loves to observe and learn. She is always laughing and playing.
Emery was diagnosed with Acute Myeloid Leukemia in July of 2022. Before she was diagnosed, she had been frequently sick; throwing up every single day. She also became lethargic.
Emery has done three rounds of chemotherapy so far in preparation for a bone marrow transplant in Denver. She is no table to leave the hospital and will be inpatient throughout all of her treatment.
Cancer has changed everything for us. We have given up our whole life, having to stay in the hospital. It is literally just her and me.
Reznor (Rez) is such a sweet little boy. He loves his blankies and stuffed babies. Since he’s not active at the moment he stays inside on the couch playing games and watching videos on his tablet.
Rez was diagnosed with Leukemia in July 2020. Before he was diagnosed, my very active baby started sleeping all day and was too tired to get out of bed. He was also very pale, bruised easily, and kept getting fevers.
Rez has been through it all; blood and platelet transfusions, spinal taps, bone marrow aspirations, port placement, ultrasound and cardiology appointments, and more. He has anxiety and definitely some PTSD. He’s scared to do anything related to going to the doctor. He tires easily and is not very active. He also gets sick in the car.
I constantly stay in a state of fear and stress. I stay home with him and live off my child support so it has been a huge financial burden for us.
Isaac loves to laugh and roar like a dinosaur! He loves the movie Zootopia, and all animals; especially the therapy dogs that come see him every week. He also LOVES being outside!
Isaac was diagnosed at 15 months old. It was discovered during his open heart surgery at 14 months old that he showed some signs the doctors were concerned about, and he underwent his first bone marrow biopsy. He did not have any symptoms until about 4 days before we got the call for results from his biopsy; he was starting to show some petechiae.
Isaac requires 6 sessions of chemo, in which each session lasts 4 weeks inpatient. The biggest struggle we have had to undergo is not being a family altogether. His older sister gets sent to a grandparent’s house every single weekend since Mom is in the hospital, and Dad works every weekend to accommodate her school/after-school activities while Mom is gone half the week. These changes and separations have put a lot of anxiety into his older sister since she only gets to see Isaac about 1-2 times each month and doesn’t get to spend time with both parents at the same time. We have had to miss every single family holiday with extended family as well.
What more is there to say other than Isaac is amazing!? He’s much stronger than I could ever be during this kind of situation. and always has a smile on his face (on good days), and he’s rocking it!
Harshit was diagnosed with a combination of rare cancers on November 4th, 2018. He has undergone a very aggressive treatment which includes many chemotherapy cycles, major thoracic surgery, and a bone marrow transplant for which he had to stay in the hospital off and on for over a year.
Harshit had a low-grade fever, coughing, and facial swelling for over three months which was misdiagnosed as allergies and viral infection. We took him for a chest x-ray in urgent care where they saw a huge (8” by 8” by 3”) tumor in his mediastinum covering almost all of his right lung. The tumor was cancerous and was diagnosed as a mixed non-seminomatous germ cell tumor. It was later found that along with this he also has Leukemia ( AML M7 ). After his tumor was taken out it was found that he also had a third malignancy, Rhabdomyosarcoma.
He has undergone many chemotherapy cycles, major thoracic surgery, and a bone marrow transplant. He is not undergoing treatment right now but has frequent visits to the hospital for tests and scans.
Harshit’s diagnosis has changed our life. We were living in the hospital with him for many months because he was extremely sick. My daughter was his bone marrow donor ( she was 14 then). Since we have no family in the USA, things have been difficult.
Harshit has some long-term side effects from his disease and treatment but we are grateful that he is cancer-free now and life is moving towards normal (new normal). He has a very positive attitude which has been the driving force for his miraculous recovery.
