A Tough Week

SONY DSCI don’t post often.  I feel like I don’t have that much to say daily to post.  My children will beg to differ.  They think I have too much to say.  I really have to be inspired, be compelled, to post my thoughts and opinions.  I guess this would be one of those days.  Its been a particularly tough week in the cancer world.To start off with, Oviedo High School said a last goodbye yesterday to a special man.  Col. Joseph Nardo lost his battle with cancer last week at the age of 77.  He was one of those rare people that everyone loved, and I mean everyone.  He embodied the tough marine persona, but he had a heart that was golden and mushy.  I remember vividly Col. Nardo at Dawson’s visitation last year.  He walked into the room in his uniform, gave his respects to everyone in my family, and stood quietly at the casket of my child and wept.  Tears streamed down his face.  His presence will be missed for all of us in the NJROTC family, and for everyone that encountered him.  I know there will have to be a new Naval Instructor for our students but Col. Nardo’s shoes are not capable of being filled.  We will have to find a new pair of shoes for our new instructor.

This past week:

Ethan lost his battle with brain cancer at the age of 12.  A post by his mother – “It is so hard to breathe now that he has gone home.”

Shannon died at the age of 8.  Shannon was finally cancer free when she died.  The toxic treatment she received for her cancer destroyed her heart and lungs.

Steven died at the age of 13.  He had also finally beat his cancer.  His lungs were destroyed by treatment.

Ollie, age 7, has been placed on hospice.  Here is a post by his mother – “We were also asked what funeral home we want to use.  I was unable to answer this question, and I cannot think about it right now, so that was tabled.  A funeral home for my seven-year-old?  How did we get to this place?”

Paulie, age 2, is losing his life to leukemia.  A post by his mother – “Today did not go as planned.  When we got to clinic they found that his blood was full of leukemia…Over the long weekend his disease progressed rapidly and aggressively.  They cannot give him any chemo.  With an extremely heavy heart I am here saying we are at the end of the road.  Due to the recent progression in the last 5 days (very rapidly) they gave him 5-7 days roughly before he passes…This is just a battle Paul cannot win.”

Spencer, inoperable brain cancer .  A post by his mother – “I asked if he is at the end of life…the nurses had no answer.  I did hold him last night until he fell asleep..felt so good to hold him…I smelled his hair…his skin…rubbed his hands…anything to try to embed everything personal about him into my memory, just in case…I find myself already wondering if there are any of his clothes at home I haven’t washed…just so I can hold them and smell them…feel him…should God call him home…anything to hold onto some part of my baby.”

So its been a rough week all the way around.  Its not fair that our children have to face this beast in the dawn of life, that mothers and fathers have to hold their children as they take their last breath.  I don’t understand why in this day and age, that our children are given treatments that are so toxic that it not only destroys their cancer, but ultimately destroys their bodies.  Why is that?  I just don’t have any answers.  I remember President Obama addressing the families at Newtown, CT after the tragic shooting at Sandy Hook Elementary.  He said,

” We come to realize that we bear a responsibility for every child because we’re counting on everybody else to help look after ours; that we’re all parents; that they’re all our children. This is our first task — caring for our children. It’s our first job. If we don’t get that right, we don’t get anything right. That’s how, as a society, we will be judged.”

Only allocating 4% of the research budget is not getting it right.  It has failed these children mentioned above.  It has failed my child.  I personally feel that our children are our greatest national resource – far more valuable that any money or mineral out there.  Without them, we have no future.  That being said, I have been on a mission lately to empower our students to rise up and take charge, demand to be heard.  If we can get our schools and students involved in raising awareness for pediatric cancer, we can start a wave, I dare say a tsunami, with this ripple.  I saw in Dawson how powerful one child’s voice could be.  A nurse did not get close to him with a needle unless they explained the length and gauge of the needle, what was going into him and why.  I have to admit it was pretty funny to watch.  If it was the wrong gauge, he made them go find the right one.  It had to be a “baby” needle.  He preferred me give him his shots.  After the nightly Neupogen shots I had to give him, we got into a pretty good routine.  It got to the point that the nurses would come into his hospital room and just hand the shot to me to give.  Dawson and I made a really great team.

As I said, I am on a mission to empower and include our schools and students in raising awareness.  I would appreciate any comments on activities that your school has done, or activities that you have heard of or just think would be great for our students to do.  Our efforts are still in the ripple phase, but the tsunami is coming!