Jaxson is one of the happiest little boys that I have ever met. He is always playing, laughing, and running wild like a typical (almost) 2 year old little boy. He has grown used to the hospital lifestyle. He loves his nurses and playing with the friends he has made that are going through similar situations. Outside of the hospital, Jaxson loves the outdoors. He loves animals, especially dogs and cats. Jaxson also loves music and anything that has water to play in.
Jaxson had low platelets at birth. After testing for many different conditions, Jaxson was diagnosed with Myelodysplastic Syndrome (MDS) at 18 months old. He was scheduled for a bone marrow transplant at the end of January. Unfortunately, his bone marrow biopsy right before transplant showed that the MDS had turned into Acute Myeloid Leukemia (AML). He was diagnosed with AML at 20 months old.
In January, he had his central line placed and had his first round of chemo. He spent 10 days on chemo and 34 total days in the hospital. Jaxson went into remission after the first round of chemo! He had another round of chemo in March as a preventative measure while his donor was preparing to donate for transplant. He spent 8 days on chemo and 26 days in the hospital. Jaxson is getting to spend 4 weeks at home. We will be admitted to the hospital again at the end of April to start chemo, and Jaxson will have his bone marrow transplant in the spring.
Jaxson’s MDS has played a role in our lives since the day he was born. It was still a huge shock when we learned that it progressed into AML even though our doctors had warned us that this could happen. I had to take a leave of absence from teaching to care for Jaxson during his treatments. It can be trying, because my husband and family are an hour and a half away from the hospital, but we have an amazing support system to help us. Jaxson is a fighter. He has gone through this at such a young age, but he has taken every step so far like a champion.
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.
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!
Kelly has a full spirt and always tries to do everything with a smile on her face. She has gotten used to the hospital lifestyle, but also still knows how to be a silly 1 year old learning to walk. She loves her Bubba, which is our dog. She loves loves to be outside with animals. Playing with toys and going for walks. She is talking more and more everyday. She has the best eyes in the world!
Kelly was diagnosed this June 2018 after we found a tumor on her chest. She has stage 4 advanced Neuroblastoma. This is a very aggressive cancer with a very aggressive treatment plan. We still have a long road ahead of us. Kelly just finished round 4 and is staying tough for a 13 month old baby girl.
Kelly has had line placements twice, she’s had a stem cell collection procedure. She has had 4 rounds of chemo with 4 more to go, the last two being very hard with a long stay and surgery to come soon. Radiation is after that for a month and more therapy for 5 months with week stays once a month.
This has been hard on us but we are getting through it. I quit my job as a teacher to take care of Kelly full time. Dad is a big help when he is not working. Our dog is staying with grandparents and comes to see us every so often. We moved to Nashville away from most of our family and friends 4 years ago. It has been difficult trying to get through most weeks on our own. Family comes in town as much as the possibly can.
Kelly has already gone through more in one year of life then most people go through in a lifetime. She is the bravest, strongest little girl. She is momma and daddy’s Hero! I wish I could change all this for her but I can’t so I want to help her get through it the best way I can!
