Late Night Thoughts of A Mother Whose Child Has Cancer (13)


Ethan got a star for knowing his numbers

Ethan got a star for knowing his numbers

Herewith the latest article as penned by Ethan’s Mom, Gila Jacobs, on her feelings as an Onco Mom dealing with the daily trials and tribulations of cancer. As originally explained, this article is posted as is to maintain integrity and passion.

September 2015

It’s 4am and I can’t sleep because I’m bothered, and I decided while looking at my son (now in remission) sleeping soundly that I need to share my bad experience with other Onco Parents to warn them.  To warn them how sometimes those closest to you can cut you so deep because your child is different.  Because your child is a survivor.

I had a very close family member to me… very close… who knew everything about my son’s diagnosis, chemo sessions, countless surgeries, and 20 days of back to back anesthetic for radiation… go and attack my mother for us giving my son more attention than we gave to her 2yr old son at a family event. Yes, just read that again… she is upset because we do not spend AS MUCH time talking to and playing with her son and we over-protect my little cancer survivor by watching him and pulling him away from her son. This is the sin we are accused of and being literally crucified for. REALLY???

I am still baffled at not only the accusations but also the drama it has caused, a major rift in the entire family because this person cannot just be grateful and praise God for the 2 beautiful, intelligent and HEALTHY children she is blessed with. I would give anything for the possibility of even having anything close to that normality. We don’t. We still sit on the edge of our seats every 3 months when we take my child to check-ups… blood test and x-rays and just hoping there is no sign of returning cancer cells… We still have to be careful of his fragile bone area where the cancer was removed from his leg, if he fell wrong he could break this leg.

warrior2We are still dealing with his delayed speech and delayed development as his development had to take a back seat to bio-hazardous chemicals being pumped into his fragile body. We still helping him learn proper social behaviour, he is so introverted due to 2 years of isolation and does not do well in new environments with lots of strange people.  We still need to watch my child’s body language very close as his vocabulary is coming along but at a slow pace. He cannot say outright if he was hurt, and his nature is not to complain, so we have to protect him by always being close by in new environments.

In the past I did sometimes envy her… thinking about how my son would look if he never had cancer. Would he have spoken as well as her son, be as confident? Have a nice plump body with rosy cheeks like her son? Would he have sung songs and make actions and not be shy? I did have those thoughts… I know better now.

I just want to warn all other Onco parents out there, this sounds crazy but it happened. People don’t understand the trauma of a Little Fighter and much less the trauma of his family and caregivers. Non-Onco parents don’t have a clue about the care and emotion involved in raising a child who could get cancer again tomorrow simply because their risk is so high! Remission does not mean cure!! This person has ripped my heart out of body and trampled on the very short lived joy we had over the past year that my son was off treatment.

How do you EVER tell Onco parents or grandparents that they compassion imageshould “let go” of their child more? How do you not understand as a mother yourself, that when death threatens your child… your whole being changes. How do you scold a grandmother of a cancer survivor for being over protective? HOW????????? How do you become jealous about a 4 year old who has beaten cancer? How do you just throw the gift of grace and healing into God’s face like that?

I don’t know what tomorrow holds for any of us, but I do know these miracle children who are surviving cancer and those who are fighting for their very lives are way too special to not be stood up for. These survivors are not done fighting when the treatment is over… they will be left with scars, with trauma, with issues far beyond what a normal child has to deal with. These miracle children deserve to be prayed for, they deserve to be acknowledged as warriors, and they have conquered. Even if their bodies are weaker, their emotional state more fragile or their mannerisms are different… it doesn’t matter simply because they are still alive!!!

My name is Gila Jacobs, my son Ethan is recovering from cancer. My husband and I are recovering from shock, stress, financial burdens due to medical bills and plain and simple exhaustion. This is our story.

Ethan, you are a Wonderful, Brave Little Fighter and Little Fighters Cancer Trust wishes you everything of the best that the future can offer. May all your dreams come true!

We salute you and your family!
Team LFCT
salute2B
 

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About LFCT

This is a blog about CHILDHOOD CANCER and CHILDHOOD CANCER AWARENESS Little Fighters Cancer Trust is a non-profit organisation that offers support and aid to Children with Cancer and their families. When a child is diagnosed with cancer it affects the whole family. One of the parents, usually the mother, must give up their job to care for the child and this creates financial problems for the family. In South Africa especially the majority of these families are not well-to-do; many of them are rural. A diagnosis of cancer can wipe out any family’s finances, let alone a poor family. The costs of special medications, special diets, hospital stays, transport to and from the hospital or clinic and accommodation and food costs for the mother who spends most of the time at her child’s bedside are astronomical. These are the people and problems that fall through the cracks, and these are the people that Little Fighters Cancer Trust has pledged to help in any way possible. LFCT takes a holistic approach to assisting the Children with Cancer and their Families, with the main aim to be the preservation of individual dignity and pride. Little Fighters Cancer Trust also focuses on promotion and advocacy of National Childhood Cancer Awareness in an effort to increase awareness of Early Warning Signs of Childhood Cancer. This would result in earlier diagnosis, giving the Child with Cancer more of a chance at Treatment and Survival. See "About" for more Background info

Posted on 20 September, 2015, in Blog, Onco Parents and tagged , , , , , , . Bookmark the permalink. 2 Comments.

  1. Hi Elizabeth
    Thank you for sharing your story with me, it always helps to know that one is not alone… All the best to you and your family as well.
    Gila xoxo

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  2. Thank you Gila for sharing your story, I understand your story all to well as my daughter is also a survivor. My baby girl is now 9 years old, in remission for 5 years which means (we have been told) that she is now out of danger but this does not stop me from having sleepless nights worrying about the what ifs. I am trying to live my life as normal as possible but it is not easy. We have had to put her in a special needs school that offers speech theraphy, ot and physiotheraphy. Family have seemingly forgotten about our struggle and not a word is mentioned about the 2 year struggle. Today we are still trying to cope as a family and hubby is only now coming to terms with everything. Do we as mothers ever stop being protective -NO, and neither should grannies. I will always be that helicopter mom because of the damage of chemo and radiation. Our battle is never over, unfortunately! we deal with everyday stress just like everyone else but carry an extra burden. We wear the battle scars on our hearts and sometimes on our sleeves depending on the day! Family are supposed to be our sounding board, our leaning post but can they ever really understand until they are in that oncology ward watching as their child sleeps wandering if life will ever be normal. Bottom line we can only share our story with one another and learn to cope with each day as it comes challenges and all. God Bless. Praying for your family xoxo Elizabeth

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