Hallelujah

Hallelujah
Hallelujah
Hallelujah
Hallelujah

Your faith was strong but you needed proof...

Today was Sylvie's final dose of Vincristine and thus ends 5 months of darkness for the Hughes family. When I held Sylvie's tiny hands in mine this afternoon and said that tomorrow and every single day after that she would feel better and better, I am speaking the truth.

Clearly, we have grown closer as a family, closer to our friends and closer to our community. But I'll never forget 2009 as being the worst year of my life, in truthfulness. Or better yet, I hope 2009 goes down in my little history as the worst year of my life. So for Michael and me, each day should get better and better for us, too.

The hospital was alive with fun and games-- you couldn't have timed Action Figure Day and Sylvie's final day any better. Her favorite clowns were there applying temporary tattoos onto Sibel and me while Sylvie simply collected hers for future use. Then someone came around with a book binding thing that printed out a hard cover Aladdin book for Sylvie customized with her and her friends names. Siobhan and I worked on Sylvie's hospital scrapbook and after arming Dr. Valda with Barbie Band-Aids for the first time in 5 months, Sylvie didn't kick him out of the room.

A physical therapist dropped in and Sylvie was completely intolerant of her. Sylvie screamed her right out the door.

Today wasn't without delays as Sylvie's 2 pm ETD was more like 6:30. Damn pharmacy but good thing mom followed up on Annette's comment regarding Sylvie's monthly pentamidine or we might still be there. Danielle was Sylvie's nurse for all three days although Jessica kept coming in for her hugs, kisses and I even heard an exchange of "I Love You," too. Danielle is very fastidious. I know that any delays from the pharmacy or blood bank drives her nuts. I was driven nuts that the lab had taken over 24 hours to process the latest test for c diff so I asked Danielle as a parting gift, to retest Sylvie.

Margaret, our social worker, called me early this morning as I was driving to the hospital so I could vent my concerns and frustration. I gave her an itemized list and she's helping us along. Annette came up this morning from the clinic so we could review the next few weeks. We'll have our Team Sylvie meeting on 7/27 when both Annette and Dr. Harris are back from their vacations. Fuck vacations (sorry). We'll do Sylvie's CT scans that day too. If all goes well, Sylvie's port will be removed as soon as we can schedule it with Dr. Valda. Outpatient. Great. Ellen came in with the doctors and I had run out of things to say and ask. Greg who is a social worker and works with Margaret stopped in to drop off literature on Camp Sunshine in Casco, Maine. They have family camp for oncology patients in late August which families rave about. The TCI-run camp is for kids 4 and up so Sylvie isn't eligible for that one.

TPN until Sylvie starts eating. No idea when she'll start walking. Fortaz antibiotic at home which means Michael and I have to set the alarm for 4 am to administer and inspect our work to make sure we do it right in our sleepless haze. Continued Neupogen shots until next week and then NO MORE EVER!!!!! I cannot wait to return the red plastic syringe bin back to The Whole Child!!!! Magnesium continues for a while-- crap-- we left it at the hospital and it takes 24 hours to compound. I give up. Not the end of the world.

Princess Sylvie followers, I don't care if you're religious or not but do me a favor and say with me AMEN.