Tuesday, May 29, 2018

Mom's Got Guts: My Mom explains why she is walking in Gutsy Walk 2018

As a parent, you have dreams for your kids. You dream that they will find their passion in life, that they will be successful, that they will have lasting happiness. You dream of sports teams, sleepovers and birthday parties. You dream that their life will lead them places you never thought possible. You don't dream of weekly medical appointments, of hearing the words "we're not sure what's going on" in relation to your kid's health, or of what it's like to wait in the Operating Room's Waiting Room. You certainly don't dream of your child's early death.

Next week will be the 18th time Jacob's gone through the surgical suite doors. 18. 18 times I've sat here in the time leading up to it, repeating to myself "they're going to find what they're going to find",fully aware that we can't control the results. 18 times I will have sat the night before wondering how the results will change the course of treatment, wondering if the intestinal polyps are changing, wondering if this will be the time that we hear the words "remission". 18 times I will have kissed my son's forehead as he's drifted off, and paced the floor of the waiting room, waiting for that electronic sign to change his status to "In Recovery".

This past year I think has been one of the most difficult for Jacob, even though we've had other serious crises in the past. Since the summer, Jacob has been unable to maintain his weight, even though he has grown a lot taller. He now looks like a walking skeleton. At times, he doesn't even have the energy to go do his favorite outdoor thing - Pokemon Go, I know he's really sick when that happens. His pain in his joints and headaches have been really bad, and his eyes continue to go into on/off inflammation flare. He continues to vomit daily after 3 years. He's also having more intense symptoms of POTS (Postural Orthostatic Tachycardia Syndrome). And that's just some of the physical issues.

As with any disease, sooner or later you run out of treatment options and this is where we're at. We're dangling from the precipice with a frayed rope and using all our strength to hold on for the ride.

In Crohn's Disease treatment, the goal is always for the patient to achieve remission as defined by the absence of detectable changes in the lining of the gut. The longer a person with Crohn's Disease is in flare, the greater risk of permanent damage and of cellular mutations leading to the development of cancers, goes up. 6 years is a long time to go without reaching remission. And with no real significant additions to the line of Crohn's treatments, there doesn't seem to be much we can do to get to the point of remission, except hope for spontaneous remission, which would be rare for a kid with such a severe level of disease. All we can do is hope that there will be more options coming very soon.

With surgery happening June 1, I'm not sure if Jacob will be able to attend this year's Gutsy Walk. I have already told him that I will go and walk for him on June 3. I'll walk because awareness is everything. It's more than just a stomach-ache, food not agreeing with you, or having frequent diarrhea. It takes more than just eating the right thing, or taking the right supplement, for the most of us to achieve true remission. I'll walk because I've held Jacob's hand through painful procedures, wiping away his tears and no other parent should have to do that. I'll walk for all the hours I've spent preparing information for school accommodations, e-mailing doctors and reading research. I'll walk for the fear that we hold for our children's future and the fears that they hold deep inside. I'll walk because enough is enough, we need to cure this disease.

1 comment:

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    I was cured of HIV with the used of natural herbs. My name is luci amber and am from US. I love herbs so much. Most times, injection and drugs are just a waste of time. I was cured 8 months ago, i suffered from HIV for 13 yrs but with the help of Dr.Nana herbal medicine, i was cured within few weeks of drinking the herbs he sent to me through courier delivery service. This same doctor also cured my Aunty from herpes, as soon as i heard she had herpes, i quickly refer her to Dr.Nana and she was cured too after drinking his herbs.I have referred more than 15 persons to Dr.Nana and they were all cured from their various illness. Have you taken herbs before?. You have spent so much money on drugs,injections,surgeries etc and yet you have no good result to show for it. Contact Dr. Nana now, he is a herbalist doctor, i assured you of a cure if you drink his natural herbs. Dr.Nana have herbs that cures Hiv, Herpes, diabetics, asthma, hepatitis, HBP, STD, cancer, chronic, etc. Contact Dr Nana through his Email address on: drnanaherbalsolutionhome@gmail.com or WHATSAPP/CALL him on+2347014784614. Please share the good news to other people once you are cured

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