You know those moments when you ask yourself, “Where has the time gone?” Typically those moments are when a birthday, anniversary, or a special occasion comes up and the thoughts quickly go to reminiscing of the past experiences throughout the years. I had that moment a few days ago. I really didn’t pay much attention to the date but then it hit me like a freight train.
It was like I was thrown into a time machine to reveal my past life. It’s been 5 years to the day… 5 YEARS. Funny, how your thoughts get all scrambled in your brain. Almost like you have to retrain your brain to this is what happened that day and this is what they said and WAIT go back I forgot that happened.
It’s been 5 years since my daughter was diagnosed with cancer. Seriously it feels like it has been such a LONG time since those days and at the same time it hits me hard like it was yesterday. This is a 5 year anniversary surviving pediatric cancer.
I remember during the chemotherapy thinking, “Man, it’s gonna be sweet to get through all this stuff and no more meds! Amelie will be safe and out of harm’s way.” My husband and I had asked the doctors when she’d be considered cured and some doctors said 5 years from the end of chemo and some said 7 years from when the lymphoblastic cells were no longer present. Confusing, right? Since then we always said she’ll be safe from any relapse and we’ll consider her CURED when she’s 13 years old.
It’s amazing how far we’ve come.
We took so much for granted until cancer hits. We had no clue what cancer looked or felt like until our little one got leukemia. We were CLUELESS! Cancer was for other families… you know the ones on television from St. Jude Research Hospital?
We’ve learned SO much about cancer, medicine, family, strength and God. It was like our brains were opened and a billion notes were filed away tucked into the crevices. We realize how our little girl has grown wiser than most kids her age due to her experiences. We have all learned so much.
Of course I love hearing stories about kids SURVIVING cancer and l “like” a lot of Facebook pages related to cancer. There are many kids that put up their signs to state they have beat cancer. It makes me so happy to see that, tears in my eyes from pure joy. Then there are photos of children just starting the chemo and in the middle of the process. Those photos hit my heart hard. It’s such a long and achy journey.
I remember the days that I was just at my wits end getting my daughter to drink her Bactrim medicine. She was 5 years old and to have a child drink syrup medication was a chore. Thankfully that was the only syrup medication and the rest were pills. She handled the pills like a champ, some days having 11 pills. Of course that was at home. The horrible days were at the hospital. She had a port-a-cath in her chest so they can administer her chemo directly. I think my daughter made it through all this because she was so dang feisty. She would kick and scream with nurses holding her down at her shoulders and arms along with my husband and I holding her legs. It was exhausting. Now that was in the oncology clinic, imagine going to the emergency department. The staff were not familiar with poking a child in the chest with a needle that you have to get precisely in or it’s another stick in her skin. I don’t blame the nurses in the ER, it’s just if you don’t have a lot of practice in doing port-a-caths then it takes time. Who has time with a screaming child?!
Needless to say every time she would get a poke it was a complete struggle. The hospital staff members were awesome and encouraging. The Child Life Specialist had a way with children and knew exactly how to work with children who are dealing with such an ordeal. Also the staff took every measure to make sure the children had plenty of toys and activities to keep their minds busy from the anxiety and trauma.
The Physical Aspects A Child Must Endure With Leukemia
Now my experiences can be slightly different than other families going through leukemia since there are different types. My daughter had Acute Lymphoblastic Leukemia (ALL) B-cell, which is the most common type of leukemia children get. Girls go through a 2 ½ year treatment and boys go through a 3 year treatment (due to cells in the testicles).
Here’s a list of what physically happens to children with leukemia undergoing treatment:
- Endless needle pokes in the chest and arms (chemo, blood checks, and flu shots)
- A couple of needle pokes in the thighs (PEG-L-asparaginase)
- Steroids that plump up the children like balloons (my daughter looked like a pregnant chipmunk – so cute but not happy)
- Excessive eating (during the steroids – my daughter ate a TON of ravioli at 1:00 AM, 2:00AM, & 4:00 AM)
- Under eating (after the steroids, it’s pure chemo nausea & vomiting)
- Mouth sores (Fortunately my daughter didn’t have much but she had to use a special mouthwash and toothpaste called Biotene)
- Loss of hair (Chunks of hair were on her pillow and she was left with strands on her head – we had a shaving party!)
- Her body color would change to pale when she needed a blood transfusion.
- Lots of sleep and relaxant medicines for procedures to do bone marrow biopsy and intrathecal medicine (methotrexate in the spine).
- That brings me to needle pokes in her back.
This is not an inclusive list as there are more tests that get done after chemo.
The Emotional Aspects A Child Must Endure With Leukemia
Again everybody is different and these were the emotional aspects that my child experienced and/or is still experiencing.
- Anger (Why does she have to do this?)
- Lack of self-confidence (Going back to school was hard.)
- Lack of self-esteem (She felt she wasn’t good enough to be friends with her classmates.)
- Anxiety (All noises bothered her to the extreme – the bus, the playground, the cafeteria, classroom, etc.)
- Sadness (My daughter knew buddies with cancer that passed away during treatment and often wonders why she’s still here.)
My daughter was in Kindergarten when she was diagnosed so school was all very new to her and she had cancer to add to the stress of it all. It was very difficult for her to go to school not because of the leukemia but the emotional aspects of leukemia. We had to talk with the school about an Individualized Education Program (IEP) where we slowly integrated her into school. She was tutored at home at the beginning from a teacher from the school district, then when she went to school on little bus since the big bus was too noisy, and she was able to do school work with a smaller group. It was a transition and in no time she was taking the big bus. Eating in the cafeteria got easier and working with her classroom was better. As the years progressed she gained confidence to get her schoolwork done and make friends. I remember her coming home completely tired and she would complain of how much her legs hurt from walking around the school. When she would come home she’d take a nap. Now she’s in the 5th grade and her school grades have improved tremendously. She loves to read and make friends. She tells people at school what she has gone through and knows she’s a tough cookie.
She does still get very sad as she thinks about her buddies who were in the hospital like Noah and Benjamin. Noah had Rhabdomyosarcoma and Benjamin had leukemia, they both passed on about 6 months of each other. Benjamin was in her Kindergarten class and was so cute, funny, and charming. He actually asked my husband if our daughter wanted to go out on a date for chinese food, pizza, or tacos. LOL He loved jokes and he loved watching Fluffy (Gabriel Iglesias). My daughter in turn fell in love with Gabriel Iglesias and she LOVES to laugh. Noah was a very sweet boy and was ALWAYS smiling no matter what tests or surgeries he had to go through. Every time we’d see him in his room, the playroom, or in the hallway he would smile. He actually gave my daughter her first Valentines, a blue heart with his name on it. We still have it, my husband has it in his bible. To honor them both, we named our little boy after them, Noah Benjamin.
Ugh! Even as I’m writing this I’m doing my ugly cry…
This is a 5 year celebration of surviving cancer. Why? Because it made my daughter who she is now – a strong and courageous 10 year old with a heart of gold who wants to do good in this horrible world. Because it has made our family bond stronger than ever. Because we met some amazing and incredible human beings. That’s why we need to celebrate for the struggle we have faced to the triumph at the end. We became closer to God and he has shown us unbelievable love.
If you know someone who is struggling with cancer, don’t leave them alone. Let them know you’re there for them. There are many wonderful support groups.
Here are some organizations you should get to know:
- Alex’s Lemonade Stand
- Bear Necessities Pediatric Cancer Foundation
- Give Kids The World
- Imerman Angels
- Light the Night (Leukemia & Lymphoma Society)
- Make A Wish
- Starlight Children’s Foundation
- St. Jude Children’s Research Hospital
These organizations I have had the pleasure of receiving gifts and/or giving to. I invite you to learn more about these organizations.
Lillian De Jesus