My daughter Magnolia Blaire (goes by Blaire) is extraordinary. Her smile is contagious. She has never met a stranger and loves an audience. She’s only 2 years old but has LOTS to say (prob thanks to listening to her big sis all the time). She’s also the most polite human being I’ve ever met- she would never interrupt without saying “excuse me” and you can’t sneeze near her without hearing a “bless you.” Blaire loves to sing and dance. She always asks to play “ballerina music,” and wanted to be Simba for Halloween (and she brought her costume to the hospital to show all her favorite nurse and doctor friends). She loves to play with Dada and snuggle with Mama, but her big sister is the one who makes her laugh the hardest and that she wants to tell all her secrets to. Blaire is sweet and funny and a very independent little lady!
In the summer of last year, we found a lump on the back of her head. Doctors thought it was an inflamed lymph node. She is currently in her 23rd out of 36 round of chemo treatments.
Our family struggles with maintaining normalcy for both Blaire and her older sister, working, attending doctor appointments at the hospital that’s 2 hours away from our home, scheduling caregivers for our children while we work since they can no longer attend preschool, etc.
Carter LOVES animals. And not only does he love them but he is super smart and knows everything about them.
He had Kawasaki disease and when he was 5 and had a lump in his throat. After a year the lump began to grow. We were told it was nothing and only 1% chance it could be cancer. The lump was removed and during pathology was when it was determined to be cancer. He was diagnosed with Ewing’s Sarcoma in January of 2017.
Treatment was a very hard time for our family as we had 3 other children to care for when he would have to stay in the hospital and my husband had to continue to work. We had a lot of emotional stress during that time but have been working through that and are doing better.
Dalton is our unique boy. He does things on his own terms and time. He is pretty easy going. His dad makes him laugh quite often with jokes or weird facts. They like to watch bloopers on YouTube. He loves to mess with the hospital nurses by making unfunny names for them, having them taste disgusting jellybeans, or squirting them with saline flushes. Dalton has a kind heart and wants to help others. Prior to cancer, he was outside riding his bike, jumping off the high dive of our neighborhood swimming pool, and playing baseball with his favorite baseball coach. Now he spends time watching science experiments on YouTube and then trying them out in my kitchen, making paracord bracelets, crafting with random recycled materials, and recently hitting a racquet ball around outside and dribbling his basketball.
Dalton cancer symptoms started with left lower leg pain in June of 2017. He was diagnosed with a fracture and then a bone cyst after an MRI. He got better after rest. Then in October of 2017 he had his second pathological fracture of his left tibia. Surgery was in December of 2017 to remove what was thought to be cystic fluid from the leg. His pain progressed in January of 2018 into February when he was referred to a surgeon for a biopsy after a third MRI revealed a suspicious area. On March 5th, 2018, Dalton was diagnosed with Ewing Sarcoma.
Dalton has had multiple surgeries to determine the cause of the original bone pain, to place his mediport for chemotherapy treatments, lymph node surgery due to a suspicious spot on a PET scan (negative for cancer), and the biggest of all was his lib salvage surgery to remove the tumor. Dalton named his tumor Toomi McPooperson and in July 25, 2018 It was removed. But in order to save his lower leg, Dalton had to have his left knee replaced and two-thirds of his tibia is now a titanium rod. His chemotherapy schedule is very busy and changes weekly based on what week he is in. The hardest weeks are when he is admitted for five days for in patient chemo. Since surgery he has been healthy and has had one extra admission for fever. Our biggest struggle as a family is finding time as a family of four, especially with not being able to be out in public.
Cancer does not define our family. We maybe separated during hospital admissions, but we all know that it has to be done in order for Dalton to beat this cancer. Our daughter has had to grow up faster than any 12 year old should and she is responsible on days when both parents maybe gone. That was the hardest part..the beginning stages of this diagnosis and for the limb salvage surgery. The kids have become closer, but still argue like normal siblings. We have a huge support group of family, friends, and community known as TEAM D. They have been a tremendous help with prayers, dinners, cards, gifts, laundry, and emotional support.
Dalton has a determination that we have never seen before. He does what is asked of him even if he is scared or he knows it may hurt. Dalton is learning to be his own patient advocate and is learning a lot about the medical world. He is strong and his dad often calls Dalton his hero
Amelie is the sweetest silliest girl. She loves, LOVES, crafts, art work, music- anything creative. She is tender and compassionate and sensitive. She is more of an introvert for sure and her love language is definitely quality time.
Amelie was diagnosed with Ewing’s Sarcoma in January of 2018. Leading up to her diagnosis, we noticed a growth on Amelie’s wrist after school one day. We thought she may have hurt it over Christmas break or doing cartwheels – her latest trick. When we took her to urgent care the Practitioner said he couldn’t tell us specifically what it was – implying he wasn’t at liberty but that if it was his child he wouldn’t wait to get a referral to an orthopedist and that we should be ok for an appointment at 8am the next morning. And really the rest is history. We found out the very next day Amelie had a fast growing malignant bone tumor that required such intense treatment.
She had to have port insertion surgery, tumor removal and bone grafting surgery, chemotherapy and many transfusions of blood and platelets. By the time we’re done she’ll have done 92 doses of chemo in less than 11 months! We are up against a lot of chemo rage and emotional outbursts right now which are super common but Amelie is such a wonderful kid and we know these things will subside. She’s generally very very content and happy.
Cancer has changed so many things about our life. I had to quit working. Our then two year old, now three year old went from daily daycare to home all week except for an occasional one or two days in. They are now best friends and do everything together. Because of her rigorous treatment we don’t see friends, we’ve been to church maybe three times this whole year and that is our main local community. I have hung out with friends maybe as many times and my husband even fewer. But with that said, we have grown SO much closer and we actually like each other! We have fun as a family. We grieve as a family and acknowledge and honor feelings together. We have better conversations and intentional time than any time before and that is a beautiful transformation to see that I hope stays with us forever.
Amelie has experienced miracles thru her story: from a 14 hour surgery taking only 6 and a bone that wasn’t even supposed to fully graft until treatment is done being completely healed and grafted. Not only that, her story has united over 1,200 people in our Amelie’s Tribe Facebook group and global communities as one of her parents were raised internationally. It’s has been an incredible blessing and lesson in the impact a life can have on this world, even one so young as her.
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.
Ariella is a very feisty, spunky 10 year old girl. She loves being silly and just the simplest things make her laugh. Her favorite thing to do is dance and her goal is to get back to dancing ASAP. She likes unicorns and emojis (especially the poop emoji). Ariella enjoys reading and being creative with crafts but mostly wants to play with her friends.
In February of 2017, Ariella was diagnosed with Ewing’s Sarcoma. Leading up to her diagnosis, she experienced weight loss, lack of appetite and pain in her leg where the tumor was. She had had 16 rounds of chemo with one to go. She had limb salvage surgery on her leg and is currently in an external fixator with limited mobility. She also had 2 punctured lungs from central line placement requiring chest tubes. She has been unable to attend school and I am almost out of leave for work meaning no paycheck and I will have to pay expensive health insurance premiums. So much has changed since Ariella’s diagnosis. We spend every other week in the hospital for up to 5 days and my husband and I take turns sleeping there so we don’t have much time together. It is very hard to get errands and such done and much of our time is spent running back and forth to appointments.
Through this, Ariella has seen so many different organizations and wants to start her own. She wants to call it Ari’s Bears and donate Build a Bears to kids in hospitals. Even through all this Ariella has empathy for others and wants to help.
