Eden is such a special little boy, as all warriors are. He loves to laugh at the silly things his brother does. He loves his chihuahua, Millie. She always makes him smile. He loves the beach and swimming and being outside. His favorite thing is his “gwanks” (blankets).
In the spring of 2015, Eden was experiencing tiredness, falling, bruising, pustules in throat, repeated illness, fever, not eating, and extreme lethargy. These are very common symptoms for Acute Lymphoblastic Leukemia or ALL. Eden was diagnosed on March 23, 2015. After many rounds of chemo, multiple MRIs, lumbar punctures, numerous blood and platelet transfusions, chemical meningitis, and methotrexate toxicity, his prognosis is good.
Childhood cancer has changed every single aspect of our lives. We have become closer to one another and are now hyper aware of all germs and potential hazards. You really find out who your friends are… strangers have become closer than the closest friend before cancer.
Paddy is just the happiest baby! He’s always smiling. Even when he’s going through chemo, he’s a smiley guy. He’s really easy-going and a chill baby. He loves to hang out with his older brother and really enjoys reading books with us. He’s just starting to roll around and explore his environment. He also is very attentive and doesn’t want to miss out on stuff.
Two days before Christmas of last year, he had a cough and a respiratory virus that developed into pneumonia. We brought him to the emergency room where they diagnosed him with pneumonia and after doing bloodwork, discovered that he had leukemia. He still is actively in treatment so we have to be careful about exposing him to people who are sick and other children. He also has a central line so he can’t take a normal bath or go swimming. He has also had some developmental delays with his gross motor skills.
He has undergone chemo for the past six months, both inpatient and outpatient. He’s had a number of spinal taps and also has had a number of bone marrow biopsies and surgery to place a central line in her chest. He also has had multiple blood and platelets transfusions. The biggest struggle or family faces with treatment is managing our family life around his treatment schedule. It’s really intensive and requires us to be at the hospital a lot, often times with very little or no notice.
Cancer changes your life in a lot of ways. I, his mom, had to quit my job to take care of him full-time. We’ve also had to help my son deal with his anxiety and nervousness about all the changes going on at home. We can’t always tell him when we’re going to be home or if Patty’s going to be in the hospital, which is difficult for all of us. We’ve been really lucky to have the support of a lot of friends and family to help make this journey more manageable, but it puts a lot of stress on our whole family.
Riley likes to tell jokes, play Legos, read, movies and video games. He has a new love for playing baseball.
Just before his seventh birthday, Riley was experiencing fevers, bone pain, and fatigue. He was diagnosed with Acute Lymphoblastic Leukemia or ALL. ALL has a long treatment plan of 3 years. The first phase is induction and this aims to kill all the leukemia cancer cells with chemotherapy. The next phase is the consolidation phase and this aims to kill any cancer cells that may still be present in the body. Then patients will enter maintenance phase. This is the longest phase of treatment and can last 2 years. During maintenance phase, children usually are monitored very closely to look for any return of leukemia cells while continuing chemotherapy.
Chemotherapy has been a lot harder on Riley than we expected. He lost his hair which was a shock for all of us. His younger brother was shifted around to other family members during diagnosis due to hospital stays. We are lucky to have a lot of support from family and friends!
Austin is go go go! He loves to be with friends and play all the time since he couldn’t for so many years. He loves to swim and Minecraft. He is sensitive and emotional and very loving. Hugs are his favorite! He loves animals and watches animal videos.
When Austin was just two years old, his lymph nodes popped out of his neck and were the size of golf balls overnight. In May 2011, he was diagnosed with – or ALL. He relapsed in October 2012. He then had a bone marrow transplant in February 2013 and relapsed again in May of 2013. In October of 2013, he took place in the CART-19 clinical Trial (immunotherapy). He is the 21st pediatric patient to have immunotherapy at CHOP. Austin has endured multiple bone marrow biopsies, lumbar punctures, cranial radiation, total body radiation, bone marrow transplant, last dtich effort to save his life on a phase 1 clinical trial, multiple complications due to chemo, hospitalizations.Needless to say he has been through a lot!
I am an adult oncology nurse and I never imagined that I would be doing what I do for a living with my 2 year old child. Our world shifted and things that mattered before suddenly didn’t matter anymore. It was a rollercoaster over and over again thinking that he was okay and then he would relapse. We were fortunate that he was able to get treatment like a transplant and the clinical trial, but the not knowing if I would have to bury my child was agonizing. It’s something that a parent should never have to go through. We enjoy life a lot more. We don’t sweat the small things and we are advocates for Pediatric cancer and passionate about raising funds and awareness. It has given us purpose. We never thought it could happen to us and it did, and unfortunately, it will keep happening unless we find better treatments.
We travel frequently from WI to Philadelphia for Austin’s follow up care from the trial. He is 3 years cancer free now and is one of 9 children in the world that are out as far as he is. He is pretty unique and I am so proud of his bravery! We ended up finding out who his bone marrow donor was and for 2 years now, Dougie (donor) who is from MD, comes to visit EVERY SINGLE TIME we travel to Philly. He will be with us on the 3 year anniversary of being cancer free along with my mother and sister, traveling from AZ and MN to be there. Austin and Doug (who is 55 years old) have a really unique relationship and Austin welcomed him into our family the day that we met him. We are so grateful!
Landon is a fun energetic toddler, he’s 3 years old and he’s autistic. He loves to dance and sing and give everyone kisses. He loves to play with his big brother and little sister. He is one of the most loving kids I’ve ever met.
In November of 2016, Landon was very pale and bruising very easily. It wasn’t until mid December that we took him to his pediatrician and he told me there was nothing wrong with him. I asked the doctor to order blood work for Landon. I took Landon to get the blood work done. A few days later we were supposed to get the results but there was a problem with it clotting to fast and it had to be redone. I went with my gut and took him to the local ER. A few hours later he was transferred to a different hospital. The next day he had a bone marrow procedure done and he was diagnosed that day with Pre B Acute Lymphoblastic Leukemia or ALL. He had a 40 day stay in the hospital and in the beginning he didn’t handle it so well. It was rough. He’s been doing ok since then with more hospital stays for fevers. I am hoping the rest of this treatment isn’t too hard on him.
Caden has an amazingly dry sense of humour and a contagious laugh. He has a strong presence and very very sweet and sensitive. Caden LOVES soccer and LOVES horses, one in particular named McDuff. His little brother and sister look up to him.
Leading up to his cancer diagnosis, Caden had a lot of different symptoms like night sweats, body rash, sore joints, weight loss, fever, fatigue, etc. On June 30, 2014 he was diagnosed with Acute Lymphoblastic Leukemia.
Caden has undergone more lumbar punctures then I can count, countless IVs, pokes, bone marrow biopsy. He continues to take daily oral chemo, chemo by IV one a month and lumbar punctures every quarter. He had a port-catheter put into his chest which caused a blood clot in his throat. We had to give him daily needles to combat the clot for three months and ultimately had the port removed. Due to his compromised immune system, Caden has had shingles, croup, fevers and complications from lumbar punctures, chemical meningitis, rashes, mouth sores, high blood pressure, aggression, depression, agitation. Caden had to miss his entire fourth grade year. He will complete treatment this fall after 3.5 years.
Throughout all of this, he maintains an incredibly happy, positive, healthy spirit. Caden can be extraordinarily stoic and brave when at the hospital. Never complains about his diagnosis.
