August 31 - Memorial Service

August 31st, 2006

Dad writing for Shawn,

For those following Shawn’s journal we have some very sad news. On Aug 30, 2006 Shawn passed away after fighting furiously to beat his illness.

In his honor we will be holding a memorial service on Saturday September 2, at 3:00PM at the Kuzo & Grieco Funeral home, 250 West State Street, Kennett Square, PA ( near where Shawn worked).

Anyone inclined to give flowers may want instead to consider donating to the Leukemia & Lymphoma Society, 2 International Plaza, Suite 245, Philadelphia PA 19113

If you have thoughts or memories of Shawn that you would like to share, would you please leave them on this site.

A map link for the funeral home can be found at:

Map_link_Funeral_Home

August 26th

August 26th, 2006

Mom today…
Shawn can now see well enough to even do things like plug his IV pole electric back into the outlets now. Much of the time his eyes are closed due to just being tired and getting so much narcotics, of course. We stay with him 24 hours a day now, as these also make him unsteady and spacy, of course, and he is on “fall precautions”…i.e. we stay close. There’s snow-cone making and drink mixing still going, though!

We are hoping for the steroids to start soon, Doc yesterday said she was pleased that Shawn’s aspergillous pneumonia was not getting worse (though he sounds junkier each day) the brand new antibiotic used to fight the Vancomycin- resistant staph infection are working well, his legs and feet REALLY look better and so she says he’s as good as can be until he gets some white blood cells working to help heal him. Mucositis continues to be a real problem…drinking and swallowing when you have no lining to the mouth and throat is so painful; how we pray for healing here! His liver continues to be a real issue, with his bilirubin of 14.2 yesterday (normal = <2). Steroids would be a huge help, so we’ll keep you posted on any developments.

Shawn continues to amaze and impress us with his courage to do keep doing whatever he needs to do to fight, even drinking ensure. It’s so needed but every swallow is agony and the benefits of having something in the GI tract are mighty hard-earned. We HATE to even ask him to have an Ensure nutritional supplement…makes you feel like you are torturing the guy, but he gets down a couple a day. Such courage! He still makes his little jokes and teases us.

Have you seen the satirical Rob Rainer movie “The Princess Bride”? (A goodie, if you haven’t seen it, pop it on your netflix lists.) Any, as Wikipedia says better than I can: [The three interesting criminals that have captured Princess Buttercup and tried (in many creative ways) to kill the man in black who is trying to rescue Buttercup] “reach the Cliffs of Insanity and begin scaling it with Fezzik’s strength pulling all four of them up on a single rope. Their pursuer, a man in black, catches up and climbs after them. When the bandits reach the top they cut the rope, expecting the man in black to fall and die, but he manages to grab onto the face of the cliff in time. When the man in black reaches the top, he wins a swordfight with Inigo, beats Fezzik with his strength and speed, and outsmarts and poisons the clever Vizzini.” I remember them watching heroic Westley (the man in black) climbing the cliff, battered, bloody but grimly determined, and Inigo says in astonishment “He just KEEPS on coming!” That’s Shawn these days! He’d snort and make a disparaging comment if he knew I’d said this, but he won’t read it (we summarize people’s posts to him these days) so I can say…he’s my hero.

We’re headed up to the hospital, Kris was there last night, so second shift is now coming in. He got to have Deb as his nurse last night (she’s been on a special assignment for months now so hasn’t been his nurse), so that was great…although all the nurses, CNA’s and facilities people on his floor are WONDERFUL and he cares for them and they for him. You could pay people to provide the outstanding care they give Shawn…but you could never pay people for the warm, funny caring that pours from these folks who help him on Rhoads 7…they are just amazing, amazing people and we are deeply grateful to them!

August 25th

August 25th, 2006

Kris again…

Another unexciting day, which is fine with us. Frankly, excitement makes us kind of nervous. Shawn got some red blood cells and some platelets, so he’s been kind of sleepy (he takes some benadryl before having the platelets and that generally knocks him out). Unfortunately, his WBC count was back to <0.1. They’re taking their time to come back after this round. The optimistic way to view this is that the chemo worked really thoroughly. He was actually hoping to write something today, but it probably would look like a cat walked across the keyboard since he’s so tired. Anyway, he’s holding in there… The docs are hoping to start him on some steroids soon, which should make him feel better. Hope everybody is doing well and having a restful day also.