Author: Adria

Cute little one

Serenity is so cute lately. She says the funniest things. The other day we were outside and it was cold, and I said that my nose was cold. My 4 year old said that her arms were cold. And Serenity stated that her elbows were cold. She had a jacket on, and it just seemed so funny.

And the other day I had the door shut. She came in the room, angry that the door had been shut, and wanted to know why I’d shut it. I said, “Because I don’t want everybody coming in the room right now.” She said, “Not everybody! Just one person! Just Serenity Burns!” When she says her name it sounds like “Retty”. She loves her name and goes around saying it all day long, reminding us that she is “Retty Burns”.

We have a clinic visit on Thursday. I expect it will be quick and routine. She has been complaining that her legs hurt the past few days. Also one eye looks pink, I’m not sure why and she hasn’t complained about it.

She balances being ridiculously adorable with throwing ridiculously frustrating tantrums several times a week. Or in the case of days like today, several times a day. But her cuteness makes up for it.

March

I haven’t updated for awhile because we’ve been busy getting settled. We found a place about 15 minutes south of where we were living before. It’s a little further away from the hospital, but the area
makes up for that. I never thought we’d be weighing distance to the childrens hospital in our decisions about where to live, but there you go.

We are further out in the country & surrounded by 50 acres of horse property and farmland. Our landlord lives next door, so the kids have convenient access to his horses, cats, and chickens. The little
ones are loving it!

We got 2 puppies about a week ago, and they are a lot of fun. They tend to get a little rambunctious around Serenity, but when they are calmer she loves to play with them.

March’s routine clinic visit was just that. Serenity’s numbers looked good and we were in and out of there fairly quickly. Her ANC was on the low side (0.7) but nothing too troubling. She is still getting
100% dose of her maintenance chemo. (During maintenance the oncologists want her ANC to stay within a certain range. If her ANC gets too high or too low, they will adjust the dosage accordingly. The
trick is to give the most chemotherapy possible while minimizing side effects.)

Our insurance will not cover Serenity’s care until May 1 because of her pre-existing condition, so we have to make the drive to the hospital for even routine blood draws as well as her treatments. Like so many things in this area, it makes no sense, financially or otherwise.

Serenity is getting better at taking her medicine in the middle of the night. Phil has taken over the job so I am getting a little more sleep. I am still exhausted all the time these days, though.

Last week Serenity ran a fever of 101 and had diarrhea. After a couple hours of it I called the hospital and they told me to bring her in. Even though she was feeling pretty good aside from the diarrhea, it
was a difficult time for her. Once we got into the examination room she clung to me & refused to cooperate for the exams. When the doctor came into the room she burst into tears and was inconsolable. She continued to fuss throughout most of the visit. The nurse practitioner ordered fluids for her, and a dose of Rocephin, an antibiotic. They took blood and stool samples to test for several things, then let us go home with instructions to call if she started feeling worse or her fever continued beyond 24 hours. Fortunately she was feeling substantially better the next day and is back to her sweet, goofy self.

Apologies!

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.

Miss Stinky Feet

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.