Prizefighter Sylvie

Sylvie is a champ! She made it throught night (so did Michael!) without getting sick although see definitely seems like she's working extra hard to deal with something funny going on in her tummy. I know it's unrealistic to imagine that Sylvie will not get sick from the chemotherapy considering it's the #1 side effect however I am pretty pleased that we have all been spared. Michael said that Nurse Jessica gave her some extra anti-nausea medicine last night.

They stopped the NG tube feeding and the Colace (for constipation) for the time being. Sylvie's Neupogen is being premeasured into syringes at Town & Country and Home Health is sending Mary back to our house on Friday so we can continue our hands on training. Or I should say Michael's hands on training because I can't be the only one administering a shot or Sylvie will hate me until she's at least 18!

The lovely nurse's aid dropped by today with a special present for Michael & me-- Puerto Rican coffee! We were talking the other day about how fantastic the coffee is in PR and I remarked to her how expensive Yauco Selecto coffee is at the Puerto Rican Coffee Importers stores in the city (Garrett mentioned it to me recently that it's over $20 pound although we have a small stash of it at home from trip last May to St. John). It was so kind and thoughtful of her to remember considering she leaves her home in the Bronx no later than 6:05 every day to drive to the hospital. Michael is going to be very happy too.

My friend Pam came out from NYC this morning-- she's a baby whisperer, a truly gifted parent and Sylvie has always loved her. Pam has two boys it was a treat for her to read My Pretty Pony and Princess stories :-). I realized it was Wednesday when the 'bead lady' paid us a visit. For the first time in a month, Sylvie was pretty excited to see her and picked out different pink and purple (what else???) beads for a necklace and bracelet. If you could see the treatment Sylvie gave her before, you would realize this is a small victory. I thanked her immensely and she told me the real pleasure is making parents smile. When she's not making beaded jewelry in hospitals for sick kids, she works for a big audio company that provides sound gear to broadway shows and touring bands (i.e. Van Halen, Lil' Wayne). Sylvie's asleep now clutching her necklace and her doll is wearing the bracelet. I think Sylvie and her baby doll have the same size wrists. Mine aren't much bigger either!

Sylvie's team of doctors, nurses, nutritionist, social worker, residents and so forth dropped by for rounds at around 11:15. Sylvie was about to fall asleep so the blinding light and presence of them was a little jarring to say the least. Sylvie is doing fantastic-- her tummy is down to 49 cm (from 54 cm) and they really expect us to go home tomorrow following chemo (I still doubt it). Otherwise, I have to say, it's been about 2 weeks since any of Sylvie's doctors made me cry and they had me so upset this morning that I thought even pacifist zen yoga teacher mom Pam was going to go ballistic on them. I realize that I don't have to like all of them. It's their job to make Sylvie better and my job to be Sylvie's mom. And I've mentioned here and there the minor altercations I've had with them and that they probably percieve me as being the hippie mom. So imagine this:

Lights, camera, action-- Sylvie is awakened from her near sleep and My Pretty Pony story by the overhead lights and Dr. Steele walking up to her and saying, "You're almost three. You can't hurt people." Sylvie was hysterical. I was also telling Sylvie that she can't pinch people; pinching and hitting is wrong and that we don't hurt people. Through this melee they did Sylvie's physical exam, changed her gown (out of the one-of-a-kind dirty princess gown no less!) and made her stand up. Again, I ask you that if you were Sylvie, would you be happy to see any of these people? Otherwise it didn't seem much different from any other visit from Sylvie's team during morning rounds. Marianne mentioned to me that they want to try using a "regular" diaper while Sylvie is getting chemo because it might wick away moisture better than the Seventh Generation hippie diapers that we, including Sylvie, are fond of. Sylvie's skin is excoriated from the chemo and of course, I'm happy to try anything, even if it means harming the environment with chemo laden Pampers. Nurse Katie dropped off a package and I hope Elmo isn't printed on them because Sylvie associates them with her friend Patrick's 'boy' diapers. They seemed visibly pleased that I didn't have an issue with it.

Not so bad, but prior to exiting, Dr. Steele addressed me directly and told me that I had to discipline Sylvie regardless of her having cancer... that she's very smart and highly verbal and if we don't address it, her next year will be even harder... that we will create a nightmare so to speak... Ellen and Marianne who I normally REALLY like told me how difficult their 3 and 4 year olds are... and if I didn't already feel like I was being attacked and pretty shell-shocked, Dr. Steele went on to say that I really should be potty training Sylvie since she's going to be 3 in May. I told her that a). if we hadn't been in the hospital for a month that I definitely would have potty trained her b). that Dr. Rosen and every single child development book says not to rush it and try around their 3rd birthday and most importantly c). that Dr. Harris specifically told us not to potty train Sylvie until after chemo is finished because we would not be able to be consistent considering Sylvie is getting fluids (and often food through the NG tube) 24 hours a day. I told them all that "non-negotiable" not an uncommon word to Ms. Sylvie Rose Hughes but that I'm certainly not giving Sylvie a "time out" while she's surrendered herself to a hospital bed for the past month. I later told the head nutritionist, Lynda, that Sylvie's always been a little strong-willed, that I've read "The Spirited Child" after my friend Ruth suggested it, that I didn't breastfeed Sylvie until she was over 2 because I personally wanted to continue and lastly, that Dr. Rosen and I have talked possibly a dozen times about Sylvie's, how do you say, headstrong behavior.

I completely understand that when Sylvie is home, we're should be trying to have as normal life as possible but we have only been home for 22 hours in which Sylvie slept most of the time so I have no practical application of this philosophy although it sounds reasonable to me. The zen mom in me didn't want to tell them to fuck off. But I was so insulted and hurt that I nearly cried. I wasn't in a position to defend myself either. They exited Sylvie's room and into the vestibule yet I think they overheard Pam consoling me so within 5 minutes the social worker who usually accompanies them came in to talk to me privately.

"Audra, I think they were not addressing your parenting skills directly because you and Michael are great parents, but they tell every parent of a toddler going through treatment the same thing." I thanked her but said it seemed like a direct hit on us, that I was very upset and also that she and Dr. Harris communicate different information. If indeed that is part of the repertoire which they deliver to all new parents of small kids with cancer, then they need to revise their schtick.

I was going to request Dr. Steele come back later today but would rather address the whole room tomorrow.

I called Michael later to tell him and let's just say he is not the zen warrior that I try to be! He did say on the brightside that at least they're talking about Sylvie's recovery. Damn I wish I had channeled that into my mind instead of getting weepy.

We've signed onto the program of getting Sylvie better. It's not about me or my feelings being hurt. Whether I was 36.995 years old or 2.83 years young, lying in a hospital bed surpressing massive nausea with a tube up my nose and 2 coming out of my chest and about to fall asleep and a barrage of people wearing lab coats barged into the room flooding it with light, put a tape measure around my waist, involuntarily removed my favorite shirt, and then lectured me about proper behavior, my first response might not be warm and fuzzy. Good for Sylvie.

And with that I'm going to Om and stand on my head in the laundry room waiting for the princess hospital gown to dry.