Fiona is all girl. She is a bright, shining, loving, strong willed, sugar to spice, dancing, singing, mermaid drawing, princess loving, Pentatonix obsessed, high heel wearing, bundle of sass and imagination. She delights in all new things and experiences, and delights those around her constantly with her unique perspective and way of expressing herself beyond her years.
In the fall of 2016, Fiona had a fever. Not high, just on and off for a little while. We just thought it was a virus she wasn’t shaking. When we visited our pediatrician the second time in one week, and I mentioned a strange bruise on her rib cage, blood work was immediately taken and we were sent straight to the emergency room. She was diagnosed with ALL by the afternoon and treatment started that evening.
On December 5, 2016, we almost lost Fiona. She suffered extreme anaphylaxis from one of her chemo drugs. I share this now and going forward, not just because of how horrific the experience was, and it was- but because it is not uncommon. ALL research has come a long way, prognosis/statistics are good, but there is still a long way to go. Known drug reactions, especially when there is alternative available, should not be acceptable for our children.
Hattie was diagnosed with Acute Myeloid Leukemia at 9 months old, still just a baby. She has known hospital life for half of her life so far. We have three dogs and she loves them. She loves dogs. She loves music and musical instruments. She watches the movies Moana, Secret Life of Pets, and Coco over and over. She is sassy. She makes hilarious facial expressions. She is very smart and stubborn!
She has had chemotherapy, total body irradiation and a bone marrow transplant. She experiences organ and kidney failure and spent 9 days in the PICU and 3 on a ventilator. It was so scary. We almost lost her.
Hattie just completed a bone marrow transplant on October 2nd and will be on strict restrictions for a year. She definitely cannot be around crowds or kids. It’s a very secluded lifestyle for her. Neither of us (mom and dad) are working at the moment. We had to relocate to Nashville for the transplant and recovery. We can’t go out and do social things or anything around other children. We have to stay pretty secluded.
Hattie has fought so hard and she pulled through. She is amazing!
Mercedes first noticed she had a large “lump” on her lower leg back around Thanksgiving of 2017. We didn’t think too much of it at the time, but by mid December it looked like it had grown so I called her pediatrician and made a routine appointment for after the holidays. By December 30, the lump had nearly doubled in size and she was beginning to have some pain in the area so her father took her to the emergency room. They did a CT scan but it was inconclusive. They referred us to a surgeon. Due to the proximity to her spine, he referred her to an orthopedic specialist who then ordered an MRI and a biopsy of the lump. The surgeon called her father on January 31, 2018 to tell him that the preliminary results showed that the lump was a cancerous tumor and that he had put in a referral for her to be seen at the Children’s Hospital of Wisconsin’s MACC Fund Center for Cancer and Blood Disorders. My ex husband called me at work at 10:14am and told me the news and the next day we were sitting in a consult room meeting with Sadie’s oncology team.
Sadie handled the treatments relatively well. She had approximately 14 blood transfusions and 2 platelet transfusions over the course of her 8 month treatment. We were able to find the right combination of medications that controlled her nausea for the most part, but she was still extremely tired and got worn out easily. She spent a lot of time sleeping during her treatments. She battled through 2 bouts of pneumonia, 4 trips to the emergency room (once by ambulance) for fevers, dehydration and a broken foot that took a good 3 months to heal. She had surgery on May 10, 2018 where they removed 1/3 of her back muscle along with the tumor that was in her back muscle.
I had to take a long term leave of absence from my job. We live an hour away from the hospital and between her inpatient stays and unexpected ER visits, my fiancée and I thought it best that I not work. We spent many hours in the car driving to and from Children’s Hospital. Sadie would be admitted for either 2-3 days or 5 days depending on which chemotherapy drugs she was getting. During those inpatient stays I would stay with her, sometimes getting a room at the Ronald McDonald House. That meant being away from my other daughter and son for days at a time. Her and her siblings have had to grow up faster than they should have. They have had to face issues no child should have to face.
Sadie was declared No Evidence of Disease on her 16th birthday, September 14, 2018! It was the best birthday gift ever! She now has MRI and CT scans and a clinic appointment every 3 months to make sure that the cancer is not coming back and make sure everything is going well. She spent the entire second semester of her freshman year of high school being home schooled. She has been back since the beginning of school and hopes to one day become a nurse herself.
Luke has the BEST personality. He is hilarious. He loves playing with his toys and getting surprises. He is obsessed with ALL toys. Especially Cars, trucks, and anything to do with Disney.
Luke was diagnosed with leukemia when he was 18 months old, back in January of 2016.He was acting really different, very whiny and clingy. Then he stopped wanting to eat, and then he started bruising really easily.
Luke has been through 14 months of VERY intense chemotherapy. Then during those 14 months, he got a blood clot which had to be blasted out with surgery and I had to give him 2 blood thinner shots a day for a whole year. He also had his port placement surgery, bone marrow aspirations, and more than 20 spinal taps with chemo. My husband and I were out of work for the first 6 months of treatment. I had to eventually quit my full-time job teaching. Now that Luke is in maintenance therapy, he only has to go to the hospital once a month for a chemo infusion and takes oral chemo at home daily.
We have had to isolate ourselves so much because of the dangers of Luke getting sick, so we feel so out of touch with everyone that was able to be “normal” for the past 2 years, while we have literally fought for our son’s life.
Braelyn is the definition of sweet and sassy!! Through treatment every nurse, doctor, or person we met always says how sweet and kind she is. She is the child at the doctors office who had her eye swollen shut, hair completely gone, and IVs hooked all over smiling at you waving, saying “Hi Hi Hi!”. Nothing can bring her happy spirit downs. She laughs at her daddy and silly noises. She loves meeting new friends! Some of her favorite things are Chocolate, the movie the Greatest Showman, and anything music related. She loves to dance and shake her body!
During Braelyn”s 9 month check up the pediatrician noticed that Braelyn was not tracking objects like a normal child her age would. When she would follow an object her eyes would shake. He was also concerned that she was hitting very few of her milestones. At the time she wasn’t even sitting up on her own. We were sent to an ophthalmologist to further get her vision checked which is where we found out that she had tumors in both eyes.
Braelyn has a genetic disorder called 13q deletion syndrome. On the 13th chromosome is the RB1 gene which prevents the eye from getting cancer. This genetic disorder is what caused Braelyns retinoblastoma. There are also many other important parts of her 13th chromosome missing causing her some cognitive and physical delays. She is 2 and a half but can only pull to stand and cruise along furniture. Braelyn is also partially blind in her left eye due to treatment. She also wears protective glasses.
Cancer has changed everything completely. We are so much stronger than we ever were. We love each other more, forgive more easily, always remind each other that the day could be worse and tomorrow will be better. Not only did it change ya emotional but it has caused us to pack up and move our family twice.
Braelyn amazes me because she is always happy. She has remained such a sweet and gentle soul. Not only does she battle cancer but she pushes through her struggles that her genetic disorder causes. She’s so special and I want to do something special for her.
Teagan loves spider man and super heroes in general but spider man is his favorite. Teagan likes to explore and for the most part is a joyful, loving little guy!
When Teagan was almost two years old, he was diagnosed with Pilocytic Astrocytoma. Leading up to his diagnosis, Teagan started stumbling and was very clumsy. He then developed a head tilt but also had an ear infection when the signs started. He fell three days later and started vomiting so we took him to the ER and they did a CT scan and that’s how we found it. He has had to learn to do most everything all over again. He has a weaker left side, sixth nerve palsy, can’t regulate his body temperature, and sometimes has a not so nice temper.
Teagan has been through three brain surgeries since October 2017. Thankfully we have avoided chemo so far and we are stable and clear of new tumors at this time. We do MRIs every three months to watch for new growth. We struggle with family time together because of appointments and Teagan not being able to stand the heat for too long. Cancer has changed a lot of things about our life but we are slowly getting back to almost normal. it isn’t easy but we are pushing through.
Teagan is the baby of six. He has fought through this all and still keeps a smile on his face. He motivates us all!
Macario is amazing, a true super hero. He smiles all the time, even when he was on chemo, he smiled through it all. Macario is a character and he likes to make everyone laugh. He loves animals and stuffed animals. Youtube is a must do thing everyday!
Macario was diagnosed with B-Cell Acute Lymphoblastic Leukemia in November of 2017. Prior to his diagnosis, he started to become inactive and pale and he lost about 50 pounds. He also had really bad breathing problems. Macario has endured many round of chemo, lumbar punctures, and steroids. He never went into remission so he has also been through CAR-T cell therapy and gets IVIG once a month.
Life has changed dramatically for our family. We live in fear of sickness and germs. We live in fear of everything. Macario has problems going up and down stairs and his issues with his speech.
Macario doesn’t let being a cancer patient stop him at all though. He is such a strong little boy!
Pedro is an outgoing person, very nice and loyal. He’s super goofy! He loves turtles and likes the book The Three Little Pigs and the Big Bad Wolf. He has a big imagination and wants to be a firefighter when he grows up. He loves the Avengers and says he’s strong like the Hulk. He has been wanting to go camping and wants to go to a scavenger hunt…he’s always drawing maps. His favorite color is gold because that is a shiny color and to him it means he has found the treasure! He’s super silly as you can tell but he’s a very brave boy.
In January of 2018, Pedro was diagnosed with T-cell Acute Lymphoblastic Leukemia. He had been going to preschool and for some odd reason was having lot’s of bruises on his legs. I thought someone from his class was bullying him or hitting him . The following day I was going to ask his teacher about it but that morning I saw the bruises were everywhere! I took him to the emergency department as he had red spots all over his body . They did numerous blood labs,ct scans, and xrays. Results came in and a few doctors and nurses came in the room. He had low platelets which explains the red spots and bruises. The oncologist told us that he had leukemia and had to be treated right away.
Pedro has had numerous blood and platelet transfusions and has had several spinal taps. He has endured many rounds of intense chemotherapy. At the moment, we are half way through delayed Intensification so, that’s 3 weeks of going to the outpatient clinic for chemo which is 4-5 days a week. Transportation is a struggle at times. Once Pedro is in the maintenance phase of treatment, the doctors will give us the okay for him to start kindergarten like his other friends he met in preschool.
Cancer has changed every single person in our lives. Relationships have changed since my son’s father lost his only blood brother to leukemia so it has been very tough on him. Trying to accommodate my parents and sister’s schedules every time we have to go to the clinic or to hospital stays is also difficult. But, I have Pedro, who amazes me all the time and my 4 and 2 year old that I hope can understand it all.