Celebrating Ethan Jacobs – Rhabdomyosarcoma

ethanSeptember is International Childhood Cancer Awareness Month and once again the Little Fighters Cancer Trust is hard at work sharing everything we can regarding Childhood Cancer and trying to raise Childhood Cancer Awareness by sharing information and Personal Stories with you.

Today we are  sharing the abbreviated version of Ethan Jacob’s story with you, as written by his mother, Gila.

We are specifically sharing it today as it is Ethan’s 5th BIRTHDAY TODAY and we thought it a fitting tribute to his courage to publish this on the anniversary of his birth!

Happy 5th Birthday, Ethan, from all of us here at the Little Fighters Cancer Trust – with TONS of love and good wishes. You are an AWESOME Warrior, Little Man and we salute your strength and courage!

Most Onco Parents (as parents of Children with Cancer are called) get some form of relief from all the pain and pressures of Childhood cancer from writing down how they feel. It is one way of getting all those emotions out that one just cannot always share with others.

The Little Fighters Cancer Trust would like to sincerely thank Gila for once again sharing Ethan’s story with us in the hope that it can help other parents who have children that are ill but are not sure what the problem is, and to raise Childhood Cancer Awareness so that earlier diagnosis can be done, as it was in Ethan’s case.

We will be publishing more poems and stories by Onco Parents throughout this month as we work hard to bring Childhood Cancer to the fore and spread Childhood Cancer Awareness – all in the effort to inform and educate other parents to the ravages of Childhood Cancer and to remind everyone that

The Best Defence against Childhood Cancer is Awareness and Early Diagnosis

Born 20 September 2011

Ethan is 5 years old TODAY! I decided I wanted to share this story in honour of September being Childhood Cancer Awareness Month but also because I’m now realising how fitting it is that it is Ethan’s birthday month!

His birthday always makes me stop and breathe slowly because we just didn’t know if he would even turn 2 years old on this earth with us. But he has and now we are looking towards celebrating his 5th birthday! I can’t explain how it feels… Grateful, relieved, overjoyed, appreciative, happy… Alive! Even though we don’t have much right now, we do have days to spend with him and that calls for celebration after all!!!

When this all started… Ethan was just like any other toddler… full of life and cute as a button! He was so lucky to have his Dad feel a lump in his right thigh. We did not hesitate to get to a pediatrician right away and after a scan, a MRI and finally a biopsy, it was confirmed to be a cancerous growth.

Ethan was diagnosed with stage 3 Rhabdomyosarcoma of the right leg muscle at 16 months old with the small ray of hope that it had not yet spread. We started a 5 day chemotherapy session immediately after insertion of a port which was an adjustment beyond words. Our entire lives and how we lived it had changed in a matter of 1 week. Days in hospital replaced outings to the park, check-ups replaced trips to the mall; low blood counts replaced visits to family and friends.

Life was about keeping everything clean and sterilized, keeping Ethan free from fevers, and declining invitations, explaining his disease over and over to everyone. Life was exhausting!

At 18 months old, Ethan braved major surgery to have the now shrunken lump (the lump had shrunk significantly due to chemotherapy from the size of an egg to about the size of a R1 coin) completely removed. He now sports a scar about 15cm long on his right thigh where the cut was made to remove the lump. He further conquered 20 days of radiation under general anesthetic to the affected area to be sure all the cancer cells are destroyed.

After this, there were maintenance chemo sessions of alternating 5 and 2 days in hospital every 3 weeks. He had fought hard during this time to keep his strength up, and was an inspiration to me to keep going. At times it was very hard on us all, but Ethan’s smile and infectious laughter through it all really made the difference.

We have completed our 51 week treatment plan, and thank God for carrying Ethan through his fight. He has since had surgery to remove his port, and has successfully completed 2 years of 3 monthly check-ups. Our stress however continues with another 3 years of 6 monthly checks and only after this can he be declared “cured”.

The irony is of course that any child survivor is at greater risk of developing a different cancer (or the same cancer more severely) simply due to the fact that they have been exposed to the ghastly treatments used to fight their cancer in the first place!!! So, we are constantly fearing, the return of this horrible disease and we try to live as normally as we can but always knowing that our child will have this series of horrible events follow him the rest of his life.

Ethan now goes to weekly occupational therapy sessions as well due to his development stalling during the chemotherapy time. He is however attending educate and is catching up fast! Everyday we are amazed at how far he has come.

We are not without some tragedy though because sadly or stupidly (depending how you see it) we have lost contact with almost half our family because they just didn’t bother to understand the trauma of this disease on not only the child but the child’s family as well! One of my family member’s initiated such a catastrophic event because of the misconception that Ethan gets more attention than her son at family events. Even though our minds are still boggled by such a series of unfortunate thinking, we have simply chosen to move on and leave those who don’t understand… BEHIND! Our time with Ethan is too precious to waste on people who only put their own feelings ahead of those of a poor child and his family who had overcome such a tragedy!

There are wonderful people in our lives though who may not be blood relatives but who shared our journey, understanding our continued trauma and who share our joy after what we have been through!

This is a very short account of a story that brings tears to my eyes whenever I think of my brave son. His undeniable strength and resilience has given me a brand new lease on life and taught us so many beautiful lessons. He is truly a survivor to be reckoned with!

To the many who are suffering the devastating effects of this disease on your children, I pray for you all everyday and I can say that you will be okay.

Happy September and Happy Birthday my Ethan!




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, 2016, in Blog, Onco Parents and tagged , , , , , , , , , , . Bookmark the permalink. Leave a comment.

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