Averi is a typical girl! She loves princesses, makeup, horses, swimming, movies, music, & shopping. She seems to make herself laugh most because she thinks she is hilarious! She also laughs at her baby sister a lot.
Averi was diagnosed at 4 years old on August 3, 2016 with ALL. We brought her into the ER because she started having leg pain and fever. Within 12 hours, she was unable to stand on her own. Her iron was low for a few months prior to being diagnosed.
Averi has been doing chemo for just over two years. A pre-existing condition (two thoracic arachnoid cysts) has made it where lumbar punctures aren’t ideal for her. So a month after being diagnosed, she had a second port placed. It’s called an Ommaya reservoir and is placed in her brain. Her oncologist removes CSF from her Ommaya and then, delivers intrathecal chemo. She had a tough time after brain surgery and lost a lot of motor function. She started PT and OT to help regain muscle and improve function. She also has annual MRIs to watch the cysts in her spine. Averi also had Kawasaki Disease as a toddler which puts her at a higher risk for cardiac issues later in life.
Mom had to quit her full time position to care for Averi and tend to all her needs. So, financially, things are tight. Averi’s diagnosis has also caused Averi and her mom to both have anxiety.
We used to be a very on the go family. Now, we are home bodies. Anxiety and depression now dwell within our family. But our family has a greater appreciation for life now.
Nathan is the happiest kid I have ever met. He always smiles and everything makes him happy. He loves garbage trucks, monster trucks, construction trucks, cats, fish, and whales. He’s just a very loving child and he has a heart of gold. He’s only two and he has made this so easy for me because he goes through it so well. He brings a smile to everyone’s face. We get told all the time how amazing he is and we are truly blessed to have this little boy in our lives.
On November 21st of 2017 Nathan was diagnosed with B-Cell Acute Lymphoblastic Leukemia. He was only 22 months old. On November 17th he got his first fever ever and it wouldn’t break for longer than an hour. A few days later I took him to our on call family doctor. He said Nathan had early signs of bronchitis and gave him an antibiotic. The following day Nathan stopped walking and he was having a lot of diarrhea. After another day, I contacted our family doctor. She did a check up and his ears and throat were really red so she prescribed a different antibiotic for that but said if he didn’t get better by the next day to take Nathan to McMaster. Wednesday came and he was not better. They took blood at McMaster and admitted him saying it was either viral or leukemia. On Friday the oncology team confirmed a diagnosis of leukemia. Nathan will be done with treatment in April of 2021. He is currently in remission and overall he’s doing really well.
When Nathan was first diagnosed, because of all the diarrhea, he had a really bad rash which abscessed and eventually required surgery. He has had some fevers and a few scares but he’s been doing really well and has fought through them like a champ
Nathan’s cancer diagnosis has brought us all closer together. Even though this is a very scary situation, it has also been good in that our marriage and family unit is stronger.
Late August 2018 I noticed a swollen lymph node behind my daughter Dalis’ right ear. I didn’t think anything of it, thought maybe she was fighting off a cold, especially since she never complained of any pain from it. About mid September I decided to finally get it checked out. The pediatrician wanted her to do an ultrasound and get blood work. During the wait for those results to get back to the doctor she ended up with a fever for 5 days. We went back to the pediatrician and he gave her an antibiotic then also had us do more blood work. The fever finally went away but when the blood work came back it showed her blasts were extremely high. It was then we were told there is a high chance of her having Leukemia and we needed to see an oncologist right away. I never thought in a million years a swollen lymph node would mean she had cancer.
She been a warrior through treatments. Every time she comes out stronger than the last. The toughest part for her is taking all the medications at home. Some days the chemo will have her lying around on the couch a few days but once it’s through her system she’s back to her normal, active self. People are always shocked at how well she handles every part of this process.
Since diagnosis we have tried to keep home life pretty much the same. We take more preventive measures to make sure no extra germs are entering the house. Everyone who comes in has to wash and sanitize their hands. We’ve made it a fun outing to go to the clinic every week. Besides hygiene and frequent visits to the clinic, life at home has been extremely normal which we are all thankful for!
We are all stunned at the resilience she has. Her positivity and smile is what keeps us going day by day. She has never once had a bad attitude about any of this process. I’ve learned so much from her and she’s only 4. She’s kicking butt and I know she will continue too.
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.
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.
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!
