Tuesday, May 7, 2013


Just a year ago our lives began to have a bit of "normal" to return since Grandpa passed away.
We had all been involved in his 13 year long journey with dementia/Alzheimer.

I was hoping for a trip again to Myrtle Beach with the Fisher/Kensinger clan. I travel well with my daughter, son in law and my grandson.

Grandson was 16 and was soon going to give up going on vacation with us, yet he always had a friend with him and we just saw him when it was "feeding time".  I so enjoyed how he could get the largest platter of a variety of shrimp, crabs and lobster claws. The butter dripping down his fingers and a smile on his dimpled face, he loved food. He was and is still a giant of a guy. He was then looking forward to his last year in High School and had finally given in to the coaches to play football. His passion then was to get his drivers license and get his own truck. Life was good.

By accident his mother saw a lump on his inner thigh. He said that it had been there for awhile and "no biggie" it will go away. Mother knows best so she had him checked. Prognosis at the ER was that he probably had some sort of cyst. Better to have it removed was the suggestion.

By May 31st the wheels were in motion for the surgery and no one was hearing any danger bells so we all were mostly relaxed. This surgery went well and fast. The test results however did not come for a few weeks and Sabrina started to be quite upset. Finally she was sent to an uncologist who gave her the horrific news.

She called me and since I hardly hear on the phone it sounded like she was stressed and told me something about "..........Sarcoma" I heard "coma" . Say what? "Like the people in Dallas , Mom. E W I N G".
My son had taken over the phone and told me he would explain later...back on the horn I heard her say"Mom, it is a cancer!"

Someone or something surely hit me in the stomach right then and there. I felt the air just leaving my lungs and could not understand what I just heard. It was too much.

Sabrina has a great blog which she started from the get go. His journey and that of the family , friends, and strangers is well reported so I will not go into the details of this year.

Of course, no school anymore, no football, no visitors unless they are very healthy.
Treatments left and right almost every day or ever other day then weeks in the hospital too.
When I saw the schedule I thought he could not survive this.
He fooled us all, he finished school at home, he became an example in the hospital and cancer center on how to behave and not complain and whine.

Today, in fact, is his last chemo treatment scheduled under the protocol which was very strictly followed.
Today is a red letter day.
Tomorrow he will find out if he needs more blood or platelets. In a few weeks or so they may remove the port inserted in his chest to get easy access to the needed fluids.

This giant  man/boy was to be seen in the hallways of the cancer center and pediatric floor in Mission Hospital (Asheville), he mixed in with tiny babies, girls and boys milling around holding a tube of this or that fluid. Most already had lost their hair. One not used to this first enters the floor sees the first girl with enormous blue eyes, no eyebrows, no hair. You try to turn to look into her eyes and she looks at you, she already knows that you saw first. She smiles and you try hard not to cry and smile back, ask her name, and tell her that you have never seen eyes like hers. So gorgeous. A lady follows and whispers "Say "thank you" Anna!' . You feel like your heart will burst.

Each time you visit you see people around beds with children of all ages, some babies are crying, some are checking out the toys on the beds and try to ignore all the visitors. It is a difficult world out here.

All of this I am writing because we need more funding, more research, a lot more work to be done for these kids. They barely have learned how to be a human being in this world and now they have to fight for their life already. I am not against all the breast cancer research but I strongly feel the children are lost in between the cracks.

Be an alert person, it is simple, check out the site which reports on all the charities. Check how much is donated THEN check how much the CEO gets out of that pile. You may be shocked at some of the figures.
Children with cancer need to be remembered every day. Research should be happening in all areas, I agree, but how many of you ever heard of Ewing Sarcoma Cancer????Often in adolescents, often in the bones and amputations needed. Did you know about this?

My grandson had so many blood transfusions and platelets that we lost count.
His mother now very aware of all that was done to him now gives blood as often as allowed and platelets.
She is telling everyone within her voice to go and do that right now. Be a donor.
I wish I could but my health issues do not allow me. I think if anyone had cancer they no longer take your blood.

This has been an eye opening year for all of us involved. Zack will be tested again soon but the doctors feel confident that he is still cancer free like he was after the surgery. This is a fast moving cel and all precautions have to be taken that it does not return, hence the year treatments.

Zack will graduate with his class this month and go on to Automotive School. He went into this year a teen ager and has come out a man, an adult. The change in him is enormous, we are very proud of him and we all hope that in the tomorrows this cancer will be vanished and in the meantime lets help the children, lets support the research for children, support the hospital Danny Thomas started, St Jude were kids and treated every hour of the day and night fighting cancer.


Unknown said...

Thank you so much Mom!! We will be vigilant in educating everyone!! Just go to facebook and look up Ewings Sarcoma Survivors, it is an open group and you really get to meet the faces behind Ewings patients who are fighting and have fought and won!! Everyone on your "list" pretty much knows about my blog, but just in case... www.zackmansjourney.com

DONATE BLOOD AND PLATELETS!!! THANK YOU!!! (she steps off her soap box and exits the room)

Jeannot said...

Yes, Brie, we must stay vigilant. We must conquer all the children's cancers. Hoping that soon there will be something different besides the chemo treatments and radiation.
Some are being tested as we write this. Let it be in the near future for every one.