Reagan was diagnosed with Acute Lymphoblastic Leukemia on January 6, 2021. She almost died but they saved her and she is amazing! Before her diagnosis, Reagan was sick. We got her tested for COVID a few times but the tests were negative and we were told it was just something viral. It didn’t make sense so we went to the ER where she was diagnosed. She was clumsy and her stomach hurt. Towards the end, her skin color was changing.
Reagan received a port but it got infected and is now removed. She lost all ability to move due to vincristine (a type of chemo) but has gone through intense rehab and is now riding horses! We still struggle with finances somewhat but I’m working more now, in the beginning, I couldn’t work at all.
Reagan is so happy and lovely. She is kind and caring and loves God! She has fought hard and she continues to fight. When I would cry she would say, “it’s ok mom…I’m going to be ok”.
Lorena is always a happy girl. She loves unicorns and puppies. She loves to make slime and dance and make TikToks.
Lorena was diagnosed with Acute Lymphoblastic Leukemia in May of 2020. Before her diagnosis, Lorena was waking up in the middle of the night crying with headaches, vomiting, and had slight fevers.
Lorena has been intubated twice: on 06/15/2020 & 03/05/21. On Feb. 14th she was admitted to the hospital. She spent her 10th birthday in the hospital and suffered from extreme depression. On April 9th we finally went back home. It was such a long time away from her other three siblings. She is currently in the maintenance phase of her multi-year treatment protocol.
Rylan was diagnosed on February 20, 2020. His symptoms were like any other cold or flu virus but the pediatrician just felt there was more. He was pale but he’s always been light-skinned. Luckily she ordered labs and the numbers told the story. It was unreal and numbing to learn the news of his cancer.
Treatments include a lot of visits to John Hopkins Hospital. We had a 12-day inpatient hospital stay at diagnosis and another inpatient stay for an infection. He gets labs very regularly and various chemo treatments on the protocol plan, typically at least once a week. He has received a lot of lumbar punctures for spinal chemo and bone marrow testing. He has also had several EKG and ultrasounds along the way. He takes more pills daily than my grandfather ever did.
We are home a lot and have to be super careful with food and the activities we do attempt. Rylan lacks energy most days and car rides make him nauseous. His sister has really struggled like most siblings do and has needed counseling to help her cope. COVID had already allowed us to work remotely so we were already home but we won’t be able to return to the office full time like other people.
He’s lonely right now. He misses his schoolmates, friends, sports, and having the freedom to just go to the neighbors and play. Summertime made it harder because he knows everyone else is out having fun and being free. He is a fighter though!
Indie was diagnosed on September 20th, 2020 with All. Indie was sleeping a lot and stopped playing; she was barely eating anything. She had a few bloody noses that turned into her vomiting blood and then petechiae appeared. The first doctor we had a virtual visit with said it was a virus. A few days later her pediatrician recognized the symptoms and sent us in for labs. We had to take her in right away from there.
We did have to travel 4 hours (round trip) every 10 days for chemo. She frequently gets sick on the way there and back. She entered maintenance in the spring which means less travel! She frequently has chemo through her port, lumbar punctures, lab draws, steroid pulses, and she had surgery when her port was put in.
This still feels surreal. Indie continues to do better at the hospital, and currently, she’s feeling a lot better!
Logan was diagnosed with ALL in the summer of 2019. His twin brother was diagnosed with cancer too. Cancer has changed everything, our family has been destroyed but we are rebuilding.
Alyssa was diagnosed with leukemia on 03/28/2019. A few weeks before her diagnosis she was sleeping a lot, not eating much, bruises on her leg, and spots on her legs, arm, and behind her left ear (petechiae).
Our daughter had surgery to install a port du cart in the chest, to do this they had to place a line in through her neck to find the correct vein for her heart. A port is installed in her chest under her skin and a needle and line have to be inserted into the port so she can receive chemotherapy. She has also had to undergo a bone marrow biopsy, and a number of spinal taps to deliver chemotherapy to her spinal fluid. She has received multiple types of chemotherapy into her port, such as vincristine, pegaspargase, doxorubicin as well as regular antibiotics and steroids.
Due to Alyssa’s treatment causing her immune system to become low, we always have to be cautious of germs and viruses as any infection can be very dangerous for her. The steroids she takes can cause her to have mood swings and to gain weight quickly. Luckily, we only have short doses of steroids since we are in maintenance so these effects are lessened. As a family, we always struggle when her spinal tap and when her main vincristine dose is due since she is put under general anesthetic and we have to leave our daughter in the operating room.
Our lives have changed quite a lot! When Alyssa was diagnosed our family was living in Boston. We were only living in America for 6 months when she was diagnosed. We had planned to stay in America for 3 years. Not having family in America, we made the decision to return to Ireland. We’ve had to be more aware of our surroundings in relation to friends and family coming to see us. If they are in any way ill we can’t see them. We have to be more flexible in work as there can be times where she might have to stay in the hospital because of a fever. Alyssa gets a lot of our attention and we have to be conscious of this. Our son doesn’t get as much attention as before but he is an amazing big brother to Alyssa. He helps us out all the time for an 11-year old that is a lot!
Alyssa has such a great positive personality! She is always smiling and laughing and even after treatment days will always have a smile on her face. She is just an amazingly strong little girl. She’s my inspiration!
