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.