Late Night Thoughts of A Mother Whose Child Has Cancer (2)


 

photo of ethan with hair 3 months post-chemo

Ethan 3 months post-chemo

 

As promised, Part 2 of Ethan’s story, as penned by Ethan’s Mom, Gila Jacobs.

Ethan is going in for his 3 month post chemo check-up next week Wednesday, and as is to be expected, Gila is a little nervous…

Gila we will be with you in Spirit and trust that all will be well with Ethan & that his  chest x-rays are 100% clear!  Team LFCT xxx

 

03 June 2014

It’s Winter now, cold and wet outside. My son Ethan has completed his full treatment plan of 51 weeks for Rhabdomyosarcoma of the right thigh. He has had 2 monthly check-ups with port flushes since and checked-out well. After another 4 check-ups – if nothing points towards recurrence we will be scheduled for a surgery to remove his port.

So, we wait, and walk in faith that recurrence will not knock at our door… and I am afraid everyday that I will find a new lump. I feel him (massage style) constantly while I rub him with baby oil, I watch him closely for any lasting bruises or strange coughs or unexplained fevers. I cry while I’m in the bath. I don’t think I have the strength to deal with this all over again.

I remember Winter in the hospital last year… it was a blessing to me when it rained particularly hard because I felt as though Ethan couldn’t play outside anyway. Opposed to sunny days that made me feel so sad for him since he loves playing outside, but he was stuck to a drip only looking out the window… satisfied with Mickey Mouse Clubhouse cartoons.

I remember feeling warm in the hospital because of the air-conditioning… that seemed to be the only thing that was positive about our admissions during Winter. I remember these things and I know that I cannot face that road again.

I remember the exhaustion after returning home after a 5 day admission. Dirty washing piled up from the long stay. Unpacking bags and re-packing with clean clothes in case we need to go in spontaneously due to a fever or something. I look at the empty suitcase now and I actually say a silent prayer asking God to please let it stay empty. Let there be no need for me to pack it full for another trip to hospital.

Now, I live each day with my son as if it was my last with him… I try not to miss a second of it! I see he is not on par with other toddlers his age (2 and a half years old now), he is not speaking proper words yet, not potty-trained, not sociable and yet he is the most amazing person I have ever met! So content with his burdens. So oblivious of his risk factors. I have to constantly remind myself not to pressure him, not to expect him to be like other toddlers. I love this bundle of energy, yet I yearn to know what he would have been like if he never got sick? Would he have talked well? What would that sound like? Would he have gone to play school? Would he be a heavier weight than he is? Would he look different? I will never know…

I will probably always wonder… and I feel guilty because I shouldn’t. The past won’t change. HE IS STILL HERE WITH ME NOW, TODAY.

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.

 

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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 19 June, 2014, in Blog, Onco Parents and tagged , , , , , , , , , . Bookmark the permalink. 4 Comments.

  1. Thank you for sharing your story. It sounds so very similar to ours! Our son, Aidan, had Rhabdomyosarcoma at age 2. His tumour was in his left thigh, and he had 51 weeks of chemo, as well as 5 weeks of radiation.

    I share all your fears and anxiety! It has now been 1 year and 9 months since he finished his treatment. I still worry daily about him relapsing, and breathe a huge sigh of relief after each 2 monthly check up.

    But Aidan is now the picture of health, and a normal, active 5 year old. He developed in leaps and bounds once he had finished his treatment and started going to play school. He is shorter than most boys of his age, but we realise that his growth will probably always be stunted. He also struggles with poor motor skills. But as far as I’m concerned he still has his life, and that is all that is important!

    I will keep Ethan – and you – in my prayers xxx

    Like

    • Thank you for sharing your story with us, I have passed your message on to Ethan’s Mom.
      Little Fighters Cancer Trust wishes your son Aidan everything of the best for the future and continued good health.

      Like

  2. Wow!what an amaziing story!keep being strong 4 the both of u!God bless!

    Liked by 1 person

  3. Well said my darling wife

    Like

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