Lifting Up Serenity

I am so sorry to leave everyone hanging. Things have been crazy-busy, but Serenity has been ok. We ended up moving suddenly & I got consumed with packing & house hunting & forgot to update the blog.

Last week we had a clinic visit & things were uneventful. She had a lumbar puncture & received her IV Vincristine. Her ANC was only 700 (they like it to be at least 1000), but she has not been sick. She will have another blood draw this week to check her numbers.

She is finishing up her monthly 5 day pulse of dexamethasone, but it hasn’t been too bad having her on steroids. She has grown a inch since last month but her weight is still the same.

She’s particularly adorable these days so I will try and get some photos up.

Serenity has a stubborn cough, and is running a slight temperature. I really hope she’s not getting sick.

Tonight I was lying next to Serenity when she put her feet in my face. And the first thing I thought was that I love this girl so much, I even love smelling her stinky feet. There is a nurse at the hospital that, like so many of them, just has a way with children. This particular one is tall, probably in his mid forties, and has long greying hair pulled back into a ponytail. He goes out of his way to talk to Serenity whenever he is on the floor. At first she was intimidated and wouldn’t acknowledge him at all. In an effort to coax her out of shyness, he would ask her if she had stinky feet. Before long she would smile each time he asked and even laugh a little bit. At home whenever her feet are smelly we tell her, “We’re going to tell Irish about your stinky feet!” and she laughs, “No! Don’t tell Irish!” It has become a little game.

She was trying to stay awake so that she could nurse before falling asleep. She had just taken her medicine and so she knew she had to wait an hour before she could eat or drink anything. Every few minutes she would ask to see my watch. Although she can’t tell time she would study my watch intently for a few seconds and then announce, “Not time yet.” I was thinking about how well she (usually) takes everything in stride. She knows there are times she can’t eat because food affects how her medicine is metabolized. For her, daily medicine has become just a part of the routine. Doctor visits, hospital stays, the fact that she can’t do all the things her older siblings can do…it is all part of her life and she accepts it without too much complaint. I am glad, but it is sad to see. And I know that as normal as life is now, we will never again be those people we were before leukemia.

We had another clinic visit yesterday. It was pretty uneventful. The waiting room was jam packed when we arrived; there was not even room to sit down at first. I overheard the receptionist tell someone that there had been a code earlier that morning. 🙁

Serenity didn’t take long to warm up once the waiting room emptied out a little bit, and she got right to business making her craft. She was making a ladybug but instead of giving it legs she gave it as many googly eyes as she could squeeze onto its body.

She had gained a whole pound since our last visit! She has really had an appetite lately. I wondered why she was so hungry when she wasn’t on the dexamethasone but maybe she was going through a growth spurt.

Our doctor is out of town so she saw another doctor who adores her. On her way out of the examining room the doctor said, “Will you blow me a kiss?” and sweet Serenity ran over to her and put her face up. I don’t think the doctor understood but I knew Serenity was offering to kiss her, which made me smile.

Serenity worked on a puzzle while we were in the infusion room waiting for her chemo to arrive & several of the nurses were astonished at how well she put the puzzle together. It was a 63 piece Mickey Mouse puzzle, and I worked on it with her, but she does love puzzles and is good at finding the flat pieces to get the edges done first. I filled in things like the sky and the grass and let her figure out how to fit together Mickey Mouse.

After her IV vincristine we were ready to go. Serenity pitched a fit when it was time to take her line out. Phil hadn’t been able to come with us and Serenity wanted to leave her line in so that Daddy could see it. It was cute but sad to see her so worked up about it.

One funny story about her lab results – the nurse had told me that she would call me when Serenity’s numbers came back. I was in the gas station when my phone rang so I let it go to voice mail because I didn’t have a free hand to write down the results. The nurse left a message to please call her back because she “wanted to talk to me about Serenity’s lab results.” My heart just plummeted. I felt like I was reliving the phone call when we first had labs drawn on the day she was diagnosed with leukemia. Really, there was no logical reason for me to panic. If her numbers had been low I would have turned around and gone back to the hospital so that she could get a transfusion. As it turned out, the nurse said she didn’t want to leave the numbers on the voice mail because she couldn’t tell from my greeting if she had the right number. I wanted to say, “At least say EVERYTHING IS FINE when you leave a message,” because I had been so scared.

We are back on the dexamethasone this week so I’m preparing for some late night eating and an increase in temper tantrums. 😉 As far as her 6MP goes I try and feed her dinner by 6 and then have her fast until 8:00. Then I give her her medicine and she can go to bed or play around until 9:00 when she can nurse. It’s hard for her to fall asleep without nursing but she is a pretty good sport.

8:00 PM fervently hope Serenity will put down the oranges and not ask for any more macaroni
8:30 PM realize you are asking for the impossible
8:45 PM pry oranges from her hand and help the littles brush their teeth
9:00 PM lie down with kids to sing songs and nurse Serenity
10:00 PM offer up a prayer of thanks that finally everyone is asleep
11:30 PM wish for bed and remind self that in 30 minutes you can wake her up for medicine
12:00 AM try and rouse a sleepy girl
12:10 AM continue in the hopes that she will open her eyes
12:15 AM try to explain that it is time for her to take her medicine
12:17 AM try and calm her tantrum while keeping her awake
12:25 AM offer a different drink to wash it down in an attempt to bribe her into taking her medicine
12:30 AM wonder if forcing it down would have been better
12:40 AM recoil when she spits most of her chemotherapy in your face
12:45 AM re-dose the medicine
12:50 AM breathe a sigh of relief and break the news that she cannot eat or drink for 60 minutes
1:00 AM beg a now wide awake girl to please go to sleep
1:15 AM try to remain patient when she becomes hysterical
1:17 AM agree to sleep alongside her on the floor
1:20 AM agree to move to the other side of the room (still on the floor)
1:25 AM give up trying to please her and try not to nod off while she throws a tantrum
1:30 AM look at the clock and laugh that you’d hoped to catch up on sleep
1:40 AM keep one eye on the clock and know that if you hold out for another 10 minutes it’ll be ok
1:50 AM announce that she can nurse and climb into bed hoping she will do likewise
1:52 AM nurse a sleepy child
1:55 AM contemplate the insanity that is your nighttime routine