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Memorial Park Opening

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

Yesterday was a happy/sad day for me and my family.  In 2006 my  cousins son, Shane 6yrs old, starting sleep walking then complaining about headaches that were severe and quick on set and just as quick to disappear.  Being an extremely athlethic boy along with Identical twin Zach and older brother Colin, my cousin Mark and Wendy took him to Children's Hospital of Philadelphia and found out the poor baby had a tumor on his brain.  They discussed surgery, chemo and rads and the long road ahead.  As Shane was under going his first surgery, Mark and Wendy were explaining how delicate the boys would have to be "when Shane came home".  Shane didnt come home, he never really recovered from surgery, 19 days from dx we all said Goodbye to Shane because The Lord took hom home.  It was 6 yrs from my recovery, 2 yrs after the birth of my child, i remember sitting in that memorial service with so many mixed emotions, a mother and the shear pain my heart felt because i could not even imagine to be in their shoes, to guilt, why had i survived and this sweet baby left at 6 and left a twin that was a blessing and nightmare i am sure.  So yesterday 7 yrs later i see my cousin for the first time as they dedicated a new playground in memory of Shane Chapman!  My cousin and i shared some feelings that needed to be shared.  Being again that Shane was so competitive during the dedication Mark said to the crowd that if Shane could be here now he would say "Dad i won!" And so to my littlest hero YES SHANE YOU DID!

i would post the sign for the park but i dont know how!

 

love to all snd prayers to dveryone on H&n board! And Happy Fathers Day to the surviviors and the Fighters!j

sabriene
Posts: 27
Joined: Aug 2006

Rachel, when I read about Shane it sure brought back a memory when I was in treatment.  There was a boy approximately the same age as Shane with the same problem.  He fought it all I am sure like Shane did until the end. I was sitting there waiting on my treatment and thought how I could cope with that if I was the parent  if that would have happen to either of my two daughters. Actually, I am not one that often will get tears in my eyes but when I saw things didn't look good for him the tears would come. It was just heart breaking. 

You mentioned the hospital in Philadelphia.  Not sure if maybe you saw my posting or not at another time.  I am in Branson, Mo.  However early part of 06 I flew back there at the other hospital for at the time a doctor was doing robatic laser sugery. If they could have done the surgery to remove the large tumor from the back of tongue then at that time I would have been the 52 persons in the U.S. to have that type of surgery.  Rachel that ENT at that hospital was great and I had flown other parts of the country for an opinion but he spent more time with me than any other doctor actually had to this time.  I was very impressed. 

Been watching how your doing with the peg tube and thank god I see your starting to drink and hopefully eat a little by mouth again. You recall the person just wrote in about six years later and now developed dysphagia.  Well I am at approximately the same time frame and that has just now happen to me.  I saw where you added a comment for I new you basically had somewhat the same problem later.  Yesterday I was getting so dehydrated had to go right over to the ER at the hospital for an IV.  Your will power and up beat attitude sure it helping me to make the decision for another peg tube.  One sure cannot help but get frustrated at times so just keep up that good attitude for letting the beast take control only makes things worse for one. I have fought so hard over the past few years to try and get the weight up, and man did it dropped fast since I developed this swallowing problem.  I was just doing pretty well swallowing some waffle with sugar free syrup & a hard boil egg.  Then had two shakes daily for sure with supplments.  I think as soon as thing settle down you will be back eating about like I was up until this week.  Think at this point I am like you were just recently at the bottom of the mountain, and now working you way back up. Smile Roger

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

Roger,

who was your ent was it at university of pennsylvania?  Swallowi g seems to be improving just last night i ate mashed potatos with pork gravy(first real ones i swallowed) and a homemade pudding/mouse low in calories for snack and delicious! I was so excited!  Sometimes i think it is half medical and half mental?  Who knows, let me know who doc was

 

God bless,

Rachel

Duggie88's picture
Duggie88
Posts: 528
Joined: Feb 2010

As you know we both had the same doctor for our operation and I continued treatment at HUP with radiation. I saw many a sight there people with no ears, their nose was gone, lower jaw missing, but the worst was a child going through treatment. Two emotions would surface. First I was really pissed that cancer invaded the body of a child and then the tears would flow. Anger would overide and I would use their strength to suppliment mine to get me through that day's treatment.

A great tribute to Shane his memory lives on. My heart goes out to you and your cousin.

      Jeff

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

Jeff, 

i did the same thing. I would watch thier innocence and drawl fron thier happiness snd play in the waiting room.  Then when i was done and they were prepped for treatment on gruneys my Mom would shield me from the sight so i didnt cry all the way home.

my Uncle is 78, at 70 was dx with prostate and was given 3 yrs, well since he is 78 i guess you know ehat he said to that lol!  Anyway he has stated that he thinks what is happening to him is fair but i am too young to have all this junk happen!  My reaponse to him is we all think its okay for us, i was 28 sure i was young but i lived some should the Lord have taken me then, but Shane was 6 he and every child has a right to a shot at life.   The Lord never promised(after Adam and Eve) that life was easy and without strife and sorrow He just promises to never leave us alone when we Ask for His help!  No one k ows the answer to what all this means except for the Creator Himself.  So everyday i will carry my crosswith as much dignity as possible and always be at peace for He walks with me and so does Shane...MY HERO!

love ya guys and gals,

Rach

Skiffin16's picture
Skiffin16
Posts: 8058
Joined: Sep 2009

Mine are with you...., terrible to lose a child, any child....especially to cancer...., or disease.

Prayers,

John

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

Thanks John, thats ehy we hope research gets better and better!  They know so much more now than when i was sick 12.5 yrs ago or Shane almost 7 rs ago, and they are making great strides in childhood cancers Hpv vaccines, chickenpox vaccine.  We can only hope! And Pray!

love Rachel

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