Giving Thanks and Pumpkin Pie

Here we are on the eve of Thanksgiving weekend and there is no end in sight for us right now. It has been decided that Benjamin definitely needs to have his Broviac replaced once his counts come up and before he is allowed home. The doctors are also discussing the need for a CT scan - normal procedure once neutriphils return as a follow-up to the anti-fungal meds he's been taking. That means that he'll be here for at least another week if not more, depending on how fast his counts rise - and they aren't moving very quickly right now. And then poor little Benjamin will be put under at least once if not twice for these procedures, and he will add to his collection of scars.

It already looks like he has freckles on his lower back at the base of his spine from all the spinal taps (or LPs in hospital lingo) he's had. And the scar on his neck from where the Broviac needles were inserted is very prominent. He also still has the marks on his groin where the double port was inserted when he was in ICU. The scars haven't had the chance to heal normally because of his almost constant state of neutripenia. I know that when his body gets back to normal the scars will heal and subside faster, but that is small consolation right now.

When Benjamin gets a real bath in the bath tub (once a week, just before his dressings are changed) I can wash his scalp along with the rest of him because so little hair remains, especially on top. I call him trailer trash now, because he's just got wisps of hair on the top, but a mullet behind. Benjamin loves those baths, flinging himself forward onto his stomach and doing a very credible frog-kick with his legs while splashing away and happily sucking on a soaking washcloth. Unfortunately, because the dressings on the Broviac have to stay as dry as possible, this is a weekly luxury for him. Just another reason to add to the long list of why we want this experience behind us.

But for all that we also have much to be thankful for. We are lucky to be in Montreal where we are being treated at a world-class facility by renouned and well-respected doctors. The nursing staff is dedicated, knowledgable and caring; they truly define TLC. So much is available to us (outside of the medical care) to take care of our mental and emotional well-being. Yesterday, Mickey and Minney Mouse from the Disney on Ice show in town this week came to visit the floor and left behind some Finding Nemo goodies for the kids (the look on Benjamin's face seeing their oversized heads was priceless). And the floor is already decorated for Halloween, with reverse trick-or-treating planned for the kids whe can't leave their rooms. "Dr. Clowns" (think Patch Adams) visit with the kids once a week. There are coping workshops for siblings of patients and Emily is doing play therapy with a psychologist. The child-life specialist has also suggested that Benjamin might enjoy "music therapy", which we will try in the coming weeks. As for the parents, last week I got complementary Starbucks coffee and a 10 minute neck and back massage. Nothing is overlooked here.

However all this alone wouldn't allow us to retain our sanity. We are also blessed with an incredible support system of family and friends who allow us to recharge the batteries or temporarily disconnect from our reality here at the hospital. Just the reminder that there is normal life outside these walls waiting for us to rejoin gives us hope and renewed strength. Not all patients are so lucky, and we see daily what a difference it can make. So even though we're not having turkey this year, I will enjoy my pumpkin pie and thank each and every one of you for your continued support and prayers. HAPPY THANKSGIVING!