Kelsie loves to laugh and play. She likes games like peek-a-boo and hide and seek. She loves to play outside, go to the park and blowing bubbles. She likes Elmo and peppa pig.
Leading up to her leukemia diagnosis, Kelsie had multiple ear infections that would not go away, a cough and she was very pale. With treatment, we know she has a good chance at survival. She had to receive 8 months of intense chemo and month long hospital stays. She had weekly and sometimes 3 times a week trips to the clinic for chemo infusions and shots. She has had multiple lumbar punctures to put chemo into her spine. She is currently in maintenance phase. During maintenance, she goes to the clinic once a month for chemo infusions, does daily chemo pills at home and has a steroids pulse once a month.
My husband had to cut back on working and stay home full time with Kelsie. So financially that has been a struggle. We also contently worry that she will relapse, get sick and have to stay in the hospital for a long amount of time. Kelsie’s cancer diagnosis has been very stressful but has also made us much closer as a family. We spend more time doing fun things together and really take the time to enjoy the “little things” with Kelsie.
Raina is a silly 3 year old that loves to run around and she finds joy in the littlest things (like pulling my nose or bubbles). She is so easy to please. Shy and guarded, she takes a while to let her guard down around new people and strangers. But once she does she becomes your best friend. She is affectionate and cuddly with a strong and stubborn personality. She loves Elmo, arts and crafts, and building with Legos.
Raina was diagnosed in October 2015 with very high risk Acute Lymphoblastic Leukemia. ALL is the most common childhood cancer and it is a cancer of the bone marrow and blood. Overall, her prognosis is good and she’s responding well. We will be in treatment for approximately 2 more years. Leading up to her diagnosis she experienced fevers, body aches/pains, paleness, petechia, and swelling of lymph nodes. She had surgery to have a port installed to make chemo easier. She currently receives oral, IV and intra techal chemo.
We were living internationally when she was diagnosed. We made the decision to move back home to NJ to be closer to family. I decided to stay home and work so one parent could focus on her treatment and caring for her. We have had to make many adjustments in our daily life to accommodate treatment schedules. We also have a 1 year old son whom I feel like I spend too much time away from during inpatient stays and clinic visits. We have been pretty private about our journey sharing information with close friends but not making it widely public. As such, I feel that sometimes our ability to socialize has been limited. The hardest part of this cancer diagnosis has been adjusting to our new normal. Seeing our little baby face this and be helpless to solve it for her is something no parent should have to go through.
Hope Session by Elaine Janet Photography. website | facebook
Naysa is a shy kid but doesn’t stop tallking once she opens up. She likes stuffed animals and dogs. She likes hello kitty. She loves playing outside. When she was two years old, she had pain in her bones and legs and could not stand up. After a trip to the doctor, she was diagnosed with acute lymphoblastic leukemia- ALL. Other common symptoms of ALL are fever, feeling weak, enlarged lymph nodes and bruises. Naysa has been through intense chemotherapy, lots of bone marrow aspirations, and many blood and platelet transfusions. Naysa had to stop her daycare because we were in the hospital all the time. It was hard to watch her going through chemo. I had to take time off from work. We had family fly from India to help us with her treatment.
Hope Session by JoAnna Robbins Photography. website | facebook
On Saturday, August 9, 2014, we were on our way to take our daughter Giana to her second swim lesson. While putting Giana in her car seat, Rita (Giana’s Mom) noticed a weird rash on her right elbow. It didn’t seem to bother her. We sent a picture via text message to her pediatrician. While waiting, Rita noticed more spots on Giana’s arms and legs as we got closer to the swim club. We still hadn’t heard back from the pediatrician so we decided not to go to the pool. Instead, we went and got breakfast and by that time our pediatrician responded to the text. She said take Giana to the emergency room immediately. We took Giana to Howard General Hospital in Columbia, Maryland where we showed the doctors the rash on her arms and legs. They asked us several questions and said they were going to draw her blood for labs. A few hours later the doctor came in with the results. It did not look so good. Giana’s white blood count was high, her platelets, and hemoglobin were dangerously low. The ER doctor told us that Giana would be transferred to Johns Hopkins Children Center, in Baltimore, for more testing and treatment. We arrived at Johns Hopkins Children Center emergency room and more test were ran. The Oncologist team came in and said they’re almost certain that Giana has leukemia. She was admitted and sent to the children’s Oncology inpatient center. After more test Giana was diagnosed with Acute Lymphoblastic Leukemia (ALL).
It’s been over a year since Giana was diagnosed and so much has gone by and changes since that frightful day. As she is past the most intense part of the chemo treatment, Giana has blossomed into a beautiful, playful, and intelligent little girl. A very observant and independent toddler who loves to explore and tell you what she does and does not want to do. As her hair grew back (and in curls), the missing hair has become less of a reminder of what faced us every day event though it still does. Giana is a fighter and will always be a fighter!
Ellie is wickedly smart… She reads books for people 6 years older! She loves to be silly, make a mess, etc. Ellie loves dolphins, animals, playing with her older sister, playing with her friends.
For several weeks before the diagnosis, Ellie was getting sick (several rounds of strep, random viruses). She became a little pale, was extremely tired, and lost her appetite which caused her to lose weight. She had stomach pain, elbow pain, and night time fevers. Ellie was diagnosed on 12/29/14 with Ell (Pre B Cell ALL). For 85% of children with leukemia it usually develops in the B cells. Ellie has been through several bone marrow biopsies, over 20 spinal taps, blood transfusions, and emergency hospitalizations. She also is feeling very sick from chemo, and behavior changes from steroids. We have had some sibling issues, including their adjustment to Ellie’s diagnosis, and figuring out how to balance the needs of all 3 kids. She still is in treatment, so these issues are still going on.
We have relied a lot on grandparents to help with all the kids. Our other two children (Ellie is the middle daughter) have learned to be more patient, gentle and understanding. It’s very hard to deal with what seems to be ptsd symptoms in everyone, to some extent. Ellie is doing well right now. Her stamina is still low and she has some muscle weakness, but is allowed to do any activity she feels up to!
Hayden has a HUGE personality. He is typically the loudest person in the room and loves an audience. He is funny, smart and extremely brave. Hayden is outgoing and loves to talk to people. He enjoys anything and everything having to do with Ninja Turtles and all superheroes. He loves to play dress up and has an avid imagination. He loves puzzles, legos and Transformers. Hayden also loves to swim and is currently enrolled in a swim class. He enjoys the playground and walks in his “bat mobile”.
Hayden was a happy, healthy child who was hitting all of his developmental milestones. Before being officially diagnosed, Hayden started to have these unusual injuries that we couldn’t explain- he wasn’t weight-bearing on his leg because of a fracture, he stopped using his arm because of a fracture and he had mysterious bruising on his head. After an x-ray of his arm and hand, they found lesions around his joints which led them to believe he may have a form of cancer. Several tests later, he was diagnosed with Acute Lymphoblastic Lymphoma on June 17, 2015….his 2nd birthday.
Hayden has been undergoing treatment for his cancer since June 2015. He has had multiple x-rays, MRIs, lumbar punctures, spinal taps, bone biopsies and bone marrow aspirations. He gets weekly chemotherapy treatments both at clinic and at home.
Cancer has turned our world upside down. Thankfully our work has been very understanding of our situation and we have a lot of supportive family in the area, but it is often a struggle to plan and schedule our hospital trips, child care, and visiting nurse. I think the diagnosis has absolutely changed our family life. We have a very different “new normal”. Our entire life is based arounf 21 day cycles of treatment and we constantly have to think about where he is in his cycle, his needs, what medicine he should be taking, how he is going to feel, what his blood counts are, is his immune system down, can we take him outside, etc. Things take so much planning. It is stressful and emotional. It is exhausting and devastating.
Hope Session by Brianne McWhinnie Photography. website | facebook
