The next segment of my BE THE GOLD Childhood cancer awareness series addresses the childhood cancer impact on the parent and family of the child diagnosed. It was heart wrenching to read the honest and heartfelt answers to my questions from two moms who have had this shattering experience. Both of these amazing ladies have become very close friends of mine and are ladies that I respect and admire.
The first installment of my BE THE GOLD – A Parent’s Perspective comes from a mom with a daughter diagnosed with MEDULLABLASTOMA, a malignant brain tumour.
QUESTION: What age was your child when they were diagnosed?
Our daughter was and active 8 year old when she was first diagnosed. She was a competitive dancer and soccer player.
QUESTION: What was your gut reaction to the diagnosis?
SHOCK and HORROR!
Our daughter was ill for a period of time, suffering from headaches, nausea and some balance issues. We initially thought it was a severe inner ear infection but after it persisted, we were directed to a Neurologist. We met with the Neurologist at 2pm, he did a quick series of tests, immediately sent us for more tests at the Children’s Hospital and then we were instructed to come back to his office with the test results. We were told in his office that our daughter has a large tumour on the brain and we were directed right back to the Children’s hospital where we were immediately admitted to ICU. Our 2pm appointment became a six month stay on the oncology ward of the children’s hospital and our home away from home for the next 10 years.
QUESTION: Can you give some insight (if you are ok with sharing) into what went through your mind?
I remember sitting in the Emergency room at the children’s hospital waiting for the Neurosurgeon to meet with us, holding my daughter on my knee and reading to her as though nothing was different than it was 4 hours earlier. The only way to describe it, is you go into an “autopilot” mode. You go through the motions and you appear composed on the outside in front of your child but on the inside you are crying, screaming and completely overwhelmed. I will never forget sitting in a room with my daughter’s Neurosurgeon as he discussed the urgency of operating on our daughter. She would be admitted immediately into ICU and start an aggressive steroid drip to try and decrease the fluid build up on her brain followed by a six hour MRI to mark her brain for surgery, and then a 10 to 14 hour surgery to try and extract the tumour. It is like it is happening to someone else. I remember staring at his hands and thinking that they would be responsible for saving our daughter’s life. I recall one of the other parent’s in the ward comparing it to the morning of 9-11; “The world stops, you will always remember where you were and what you were doing at that point in time and life would never be the same again!”
QUESTION: How has your child’s diagnosis changed your family life?
Well, because of our daughter’s complications, we lived in the hospital for six months and
then stayed at least six nights every 3 weeks for the next 56 weeks while she underwent her aggressive chemotherapy and radiation treatment and started a strict daily regimen of physical and occupational therapy sessions. She went into her surgery able to walk and talk like a normal 8 year old and came out of the surgery unable to do either. It was devastating! Family time was spent at the hospital and home cooked meals were a thing of the past. Our son moved in with his grandparents so he could continue with his schooling and activities and we tried our best to switch off so as parents we could be there for him as well. Having a child with cancer is also very isolating. Often, when they are at home, they are neutropenic (meaning their immune systems are compromised) so no visitors can be allowed and everyone must go through a strict “sterilization” process when they get home so they won’t bring possible infection into the home.
QUESTION: I have been in the Oncology unit of the children’s hospital but it must be surreal to actually stay there. Is it as overwhelming as it seems to an outsider?
Yes, the children’s oncology ward is surreal to say the least. Children are in different phases of treatment, most have no hair and are very ill but they still manage to smile at the childcare workers and the hospital clown and they can still be found in the playroom trying to shut out the sickness and focus on playroom activities. The parents are sleep-deprived, coffee indulged and can be found at all times of the day and night walking the halls, consoling their child or grabbing a few minutes of sleep on a sleep chair beside their child. You do what you can to make it your “new NORMAL!”
QUESTION: What are some of the experiences you would like to share with others to make them aware of what your child and others diagnosed go through?
There are too many to write down so I guess what I would want people to know is that
having a child with cancer is every parent’s nightmare. To see your child having to go through treatment, surgeries, painful therapies and being isolated socially is heartbreaking; you want to find some way to take on the pain yourself but you can’t, so you suffer through it all and do your best to stay strong for your child.
QUESTION: Childhood cancer Awareness is my national Charity Platform, is there a message you would like to deliver to others to increase awareness?
We need to find a cure for childhood cancer; all the different types. Our family has become very involved in creating awareness in the past few years and it is our goal to make more people understand the impacts that a childhood cancer diagnosis has on the child and the family. You never know what child will be affected next; yours or someone close to you, so making everyone aware of the effects of childhood cancer and urging everyone to take a stand, make a donation and make a difference is critical!
QUESTION: Finally, what have you learned from your child having gone through this diagnosis and subsequent treatment?
Well, we have certainly learned a lot from our daughter. She inspires us every day to do what we can to create awareness and raise funds for childhood cancer. Despite her limitations and her fragile health, she has been determined to “pay it forward” and to help the charities that have helped us through her diagnosis. She has been recognized for her inspiration, courage and for telling her story to others to encourage people to get involved in childhood cancer charities. She has amazing strength and she has taught us to live every day to the fullest and not to take anything for granted. As a parent, my one piece of advice I would like to share is to always express your love to those who mean the most to you. I tell every parent, hug your children and be thankful for having been blessed with them. They truly are a GIFT!
Thank you for sharing just a fraction of your story with us. I know I have been touched by your story and I know others will be too.
Keep tuned in for my second installment of BE THE GOLD – A Parent’s Perspective.