Friday, September 15, 2023

The Faces of Blood Cancer - ALL

Not only is September blood cancer awareness month but it is also childhood cancer awareness month.

I'm very happy to introduce you to Amelia who was diagnosed with blood cancer when she was only 2 1/2 years old. 

Her Mom Veronica was nice enough to share only a small part of Amelia's cancer journey with me.

They continue to share updates and other stories as well as support organizations that were a great help to them such as LLSC and Candlelighter's by participating in Light the Night Walks and doing bottle drives and more.

You can check out her facebook page at Amelia's ALL.

The questions were answered by Amelia’s Mom.

What was/is your diagnosis?

Acute Lymphoblastic Leukemia

How did you find out you were sick? What led to your diagnosis?

Canada Day weekend 2018 - we noticed our 2 1/2 year old daughter Amelia limping as she chased her older brothers around the campsite. As the weekend progressed, she walked less and less and so we immediately arranged a doctor visit upon our arrival back in town. The night before we brought her in she had a slight fever of 99 F that came and went with medication, and a little prickly purple rash on her legs. Then, when we were literally in the doctor’s waiting room, she looked up at me with blood oozing from her gums. 

Once the doctor heard the symptoms, she sent us straight to Janeway Emerge where we were shocked to learn all signs and tests were pointing towards blood cancer.

What were your first thoughts when diagnosed?

Shock. I couldn't believe this was happening. It was surreal. She was my youngest baby. My only girl. And what would I tell her brothers? How would we tell them? And that I had to pull it together because my husband already lost a cousin to the same condition and how must he feel... 

Amelia didn't understand of course and there were no words to say.

What did your treatment consist of?

Amelia was admitted and the next day we received confirmation that she had Acute Lymphoblastic Leukemia.  We spent the next 2 weeks in the hospital with her, during which time she received 11 blood and platelet transfusions, started chemotherapy, underwent surgery to install the port in her chest through which she received most of her treatments and spent 5 days in ICU covered in wires due to complications.  Then she was discharged to continue the rest of her treatment as an outpatient through the Janeway’s Medical Daycare Unit. 

After the intensification period of her treatment was done, blood tests indicated there was no evidence of disease. Remission! The first hurdle - phase 1 of her treatment - was done!

 She still had several phases of her treatment protocol ahead of her and so for the next couple of years Amelia would receive chemotherapy via IV's, lumbar punctures and even orally at home in addition to steroids and antibiotics. During the first 5 phases, chemo was administered in hospital anywhere from once every 10 days to 4 out of 5 days and sometimes daily at home. In her last phase, which lasted from April 2019 until September 2020 she received chemo orally at home every day and once every 3 months via IV at the Janeway. 

It was intense! 

She finished her chemo in 2020 after 803 days of treatment and continues to be healthy. She is active and happy and finally went on her Wish Trip this year!

What was your life like before your diagnosis?

She was happy, vibrant, full of life. A regular toddler.

How is life different for you now post diagnosis?

We think every day how grateful we are to the hospital, to blood donors, everyone and every organization that has a hand in saving her. I still get to hold my baby, not everyone who hears "your child has cancer" does.

Based on your own experience, what advice would you give others that were diagnosed with the same type of blood cancer?

The conversations I had with other parents of childhood cancer patients and/or with survivors helped normalize what we were going through, which enabled me to be in a better frame of mind caring for her. Reach out to the hospital patents group, your local Candlelighters group or connect with a peer through the Leukemia and Lymphoma society of Canada peer support program. Even if it is via email. Even if you only go one time. Even if it is just one phonecall. I learned a lot from the parents we met through the hospital waiting rooms, Candlelighters and the LLSC. 

Treatment is 2-3 years, you don't have to feel alone.

If you look at the picture above you will see Amelia wearing a necklace of beads. Each bead represents a treatment or procedure such as a course of chemotherapy, hospital stays, blood work and many more. 

For more information on this program you can check out the webpage Beads of Courage Canada or visit their facebook page.

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