Emmett is spunky and sweet. He loves love, he will take a kiss from mom and dad any day. He also loves dinosaurs.
Emmett was diagnosed with ALL on April 27, 2023. Looking back, he was super pale, in a lot of pain, and had petechiae all over his body.
Right now he is immune compromised so he is sick a lot. He can’t keep up with his older sister. He’s also been hospitalized a lot recently. He has been sitting in a hospital bed on and off for a really long time. He will need to spend some time building strength in walking again.
This has been a living nightmare that single handedly uprooted our family and had been the single worst experience of our lives. Oddly enough for as much as it has sucked, it also has been equally good. We’ve found a really cool community and there has been a ton of love.
One month before diagnosis, Amira wasn’t using her right arm, specifically her shoulder movement. She would play, but would hold her right arm like a chicken wing close to her body. We thought maybe she fell on a toy or something. It would come and go, but when we noticed that it wasn’t going away we took her to see her pediatrician. It took us a whole month of several checkups, specialists, bloodwork, x-rays, etc before we got the call that it was cancer. The hard part was that we did send bloodwork for cancer into an oncologist 2 weeks into our search for a diagnosis and they said it didn’t look like cancer and to keep looking. After another 2 weeks of searching, our pediatrician suggested we get blood work again at a pediatric oncology department which we did. Results came back and the oncologist called immediately to tell us that it was cancer after we thought cancer was already ruled out. At that point, Amira’s bone marrow was packed with cancer cells and 44% of her blood was cancer cells.
Amira is over 2 years into her chemotherapy treatment and has had countless limitations along the way, but is now in a good spot in treatment where she is feeling better and able to play with full function of her body.
At the time of Amira’s diagnosis, I had just returned to work after giving birth to my son. My husband and I both had to take a lot of unpaid time off of work. We also could not all go to the hospital together, so we had to divide and conquer which meant one of us at the hospital with Amira and one of us staying home with our son. With Amira having a compromised immune system, we have had to skip every single holiday, family function, etc. for the last 2 years. We have been living in a bubble and not being able to go out and about or live normal lives since diagnosis.
Everything she goes through is normal for her and she does great with taking medicine, fighting through tough days, helping the nurses, etc. Amira is a fighter and does not complain at all along the way!
Kyra has always been very active in sports. She loved dumping water on her head during softball or soccer games. The beginning of 2017, She started putting on some weight and drinking water with an unquenchable thirst. She also started having stomach pains. At first, I thought it was an age-appropriate time for “cramps”. My mother disagreed and I took her to the doctor to investigate. At first, they said it was a stomach blockage, but nothing changed. They did a full blood panel and found out that her sodium level was severely low. They requested we bring her in immediately for a CT scan to make sure that she wasn’t having any seizures. The results were “no seizures, but we found a mass in her brain”.
She has had two rounds of chemotherapy separated by a round of 33 radiation treatments in the middle. During the second round of chemotherapy, Kyra went almost 3 weeks without eating, She lost a lot of weight and muscle mass. She was almost bedridden and could barely walk.
After that, she pushed herself to eat and get “back to where she was.” She wanted to play soccer and softball again. Due to the treatments and recovery thereof, she has gained back more weight than she is happy with. So we have been researching and reaching out to nutritionists, dieticians, trainers, etc.
We are also working with her on finding exercises for the mind. Helping her find tips or tricks to studying and remembering things that she will need to remember. It has taken extra work to help her develop her speech as she grows up. She has had difficulty maturing her speech due to memory retention. Sometimes her mouth and brain work at different speeds.
While Kyra was going through treatments, I found out that my business partner was embezzling, so our company folded up. It was a blessing and stressor. I didn’t have to worry about the business or disappointing clients, but now I had financial worries. We have been able to make things work. We live with my mother, and she was gracious enough to help with whatever we needed. She has been instrumental in Kyra’s journey.
Kyra is the strongest person I know. She looks at me as if I am strong and brave and I know that she tries to emulate that. But when we first found out about the tumor in her brain, her response was “Ok, what now? How do we get rid of it?” I remember being blown away. Like I usually have that response to breaking down on the highway or my power going out, and my 11 year old was just told about cancer in her brain and she just squinted, took a breath, and basically said, let’s do this.
She has never lost her light. I named her Kyra because it means Sun Goddess. She has been a shining example of her name. Even during treatment, she asked the nurses how they were doing, greeted people with a smile, joke, or a story. She is always smiling and trying to spread joy.
In the fall of 2022, Milan was sick with what we thought was the flu or Covid. We tried to wait it out but he didn’t get better. He would come home from school exhausted. After 2 weeks of this he got a nosebleed that did not stop. His liver and spleen were enlarged, lymph nodes were swollen, and he was turning yellow by the time we got to hospital. Within 20 mins of taking blood they knew he had cancer.
He spent 3 months in the hospital since November. He’s had over 80 doses of chemo and so many side effects. He turned 16 while in the hospital feeling horrible. He still has 2 more years of treatment. He is going to hopefully return to school soon.
We have two other kids so it’s a big life change for all of us. We are at the hospital so much it’s like our second home now.. We are getting thru it though.
Juliana was diagnosed wil ALL on Dec 30th, 2021. She had 2 random fevers between Nov – Dec. unknown causes, was tested for everything. It was just “viral” and needed to run its course. The second fever she had was extremely high fever. After that, we noticed she didn’t want to walk. She had leg pains (which we assumed was growing pains). Then she wasn’t eating much, she was very pale, low energy, and sleeping a lot. I felt like something was way off. I talked to our pediatrician and asked for blood work. We had an appointment for the following week. I couldn’t wait. I was able to get her in the next day. I finally got her results through mychart and knew it was cancer by just looking at her bloodwork.
At the beginning she didn’t want to walk. She hated the IVs and would refuse to move her arms. During treatment she lost a lot of her balancing skills and strength and was very shaky. Certain chemos caused that. She was on a clinical trial for 2 -1 month infusions. She was connected to a bag for 28 days each time. That infusion would make her arms and hands very unstable. She’s currently in jazz and able to keep up. Last year when she joined, it was a struggle.
Her treatment plan is about 2.5 yrs long. She’s had 17 procedures so far. She has one more left in late December to remove her port. About half have been through anesthesia, 3 have been half awake with meds, and the rest were with laughing gas. I’ve lost track of how much chemo she’s gotten. It’s been so much, and she also takes a night chemo pill.
Juliana was diagnosed right in the middle of covid. We were very much isolated. No visitors allowed in the hospital. At home we only did long distance visits. There were a couple of gatherings where everyone was masked and took covid tests.
Our struggles have been mostly mental health related. It’s hard, mentally. Lots of stress. Lots of ER trips and unexpected hospital stays.
Cancer changes everything. My husband has luckily been able to work from home the whole time. Juliana lost most of her childhood due to cancer. She’s missed out on a lot. We all have a family. We were in survival mode and still are. Juliana is the strongest kid I know!
Priscilla was diagnosed with Leukemia on April 15, 2023. Before her diagnosis, she experienced nose bleeds and was always sick. We can not go to crowded places due to her low immune system.
This has changed a lot! My daughter needs to stay at home if she doesn’t have treatment and we can’t go anywhere now! And the whole family needs to be conscious and more extra care.
Cancer is a scary word! And it turned our world upside down but I learned to look at the positive side of everything and live day by day. As I look back I can still feel how blessed we are and God always sending us an angel in disguise who is always willing to help! Right now our hope is to see the light at the end of the tunnel.
