Category: Serenity

Serenity has been tagged by Mollie. Here are 7 things that you might not know about her.

1. My parents always intended to name me Zion. When my mom went into labor and she & my dad still disagreed about whether to spell it with an X or a Z, they started looking at other names. If I’d been born on July 4th I would have been named Liberty. Instead I was born on July 6th and they chose Serenity Margaret. Margaret was my great grandmother’s name and my grandmother’s middle name. I’ve lived up to the name Serenity. 🙂

2. I was born at home in the water, and weighed 9 lbs 11 oz.

3. I have 4 older sisters and 3 older brothers. My 3 yr old brother and sister (twins) refer to me as Baby.

4. My parents give me a few sips of Pepsi or Mountain Dew after I take my medicine. My mom feels a little guilty, but it’s the only thing that convinced me to cooperate with taking my medicine, and what’s a little caffeinated soda when you take chemotherapy every day?

5. My favorite candy is peanut butter M&Ms.

6. I have a cute little birthmark on my elbow.

7. I often put a blanket over my head and tell everyone I’m gone. I get a big kick out of watching them look for me. I also love to pretend that I’m a bear.

I’m tagging anyone who is reading this, but especially Brinley.

Serenity is doing much better than before. Monday she only had a fever once, at 4:00 a.m. So far today she hasn’t had one since 12:30 a.m.

Sunday she had a CT scan. It was pretty traumatic. She wasn’t sedated & I didn’t think she would be so afraid of the machine. She was hysterical and screaming. Phil & I were both there, holding her hands, rubbing her forehead, reading a book to her, talking & singing to her. She would calm down and then a movement or noise would set her off again. I felt really bad.

There had been some question as to whether or not she ought to be sedated for it, so finally I asked could we just sedate her. It had been 6 hours since she had had anything to eat or drink except the contrast for the test. I had refused to nurse her during that time just in case she did need to be sedated, since the nurse had mentioned it. I was pretty upset when I asked that she be sedated and the technician informed me that there is no anesthesiologist available on the weekends, so we would have to schedule it for the following day. After she had gone hungry all morning and worked so hard to drink all the contrast they wanted her to have! I was pretty sure she wouldn’t agree to drinking it again the following day.

Eventually we did get her settled down enough that they were able to do the scan. All in all it probably only took us a half hour but it seemed like forever, and I felt awful knowing how terrified she was. For one thing the machine made a big noise while it was running. It wouldn’t have bothered an adult but here she is afraid of the sound of the pressurized air, afraid of the sound of trucks driving by outside, afraid of sounds she hears outside the room when the nurses are moving stuff around. To be lying on a narrow elevated table and then hear the noise from the machine surrounding her was terrifying to her.

Serenity has had two platelet transfusions since we’ve been here, so her platelets are currently in the 50s. Her hematocrit is still quite low. Overall her numbers have been dropping slowly. They are not as low as they were when we came in, but there is definitely a downward trend. She is still getting the Neupogen shots every night – horrible, because she begs not to have to get them – and her ANC has come up from 0 to 700 and is holding. I asked the doctor about it because she’s had the shots 6 times now and yet her ANC isn’t going up any further. (It did move to 900 one day, but then dropped back down to 700 the following day.) The doctor said the fact that it is holding at ANC rather than dropping along with her platelets and hematocrit mean that the Neupogen is doing something. A good thing I guess, but I really wish we could stop giving her the shots. I meant to ask the doctor about Neulasta, but forgot.

Serenity has become very temperamental these past few days. I think she is just fed up with being here and being stuck in this room. We’ve only been able to leave the room one day during the 9 days we’ve been here.

Today she threw up and it got all over her port dressing, which then had to be changed. Getting the dressing removed is probably the thing Serenity hates most. She really really really does not like it. I was just sick to my stomach that she had to have it changed all over again. She had it changed this past Thursday and it will have to be changed again this coming Thursday.

Other than that I think we are close to coming home. We will probably come home on IV fluids, the Neupogen shot, and antibiotics.

Well, nothing much has changed. We are still at Primary Children’s. Serenity’s fevers seem (to me) to be a little less frequent, but they are still high. Last night’s was 105. The doctor did do a urine culture, along with blood cultures and stool tests and everything is negative. They are testing for C diff again (this is the 3rd time in the last 2 weeks) because her poop is still so liquid. I don’t like when we are waiting for C diff results. She can’t leave the room & all the staff puts on protective gowns every time they enter. When I go to the ice machine I feel like everyone is looking at me, wondering if I washed my hands. I’m sure it’s all in my head, but it was such a relief when her test came back negative and we could go back to being normal patients.

Serenity’s regular oncologist is the attending doctor over the weekend, so I am hoping to get more information from him as to what they are thinking. I’ve heard various things from other cancer parents. The fevers could be a side effect of the ARA-C, which we finished 6 days ago. They could be from some sort of infection that hasn’t shown up yet. Although it’s uncommon for it to take this long, it’s not unheard of. It could be a fungal infection that hasn’t manifested yet. It’s possible, but unlikely, that it’s related to her port. The nurses often refer to her as the mystery patient, because she looks & acts so good when her fever is down. But she is so very sick when the Tylenol wears off.

She has been complaining a lot about her eyes since we’ve been here. I spoke with the resident, and I hope that an opthalmologist will be able to take a look at her.

It is hard being away from the rest of the family for so long. I miss the kids and I know they miss me. It seems like there was hardly a break between Taran’s 2 weeks in the hospital and now this. But I am grateful that I have neighbors and family helping out with my other children & with meals so that I can be here with my girl. And I love the fact that I can snuggle her all day and all night long.

She has had the Neupogen shot for 3 days now. It is bringing her ANC & white blood count up, which is what we’d hoped. Her hematocrit and platelets continue to drop. My poor girl hates the shots and I hate having to hold her during them. It will be hard to continue to give them to her at home. 🙁

On a happier note, here are some photographs from our stay here.

One of Serenity’s favorite things to do at the hospital is get extra “stickers” with her name on them and put them all over her clothes.

Being a little bit bashful about me photographing her artwork.

The artwork in question. (I helped with the socks ;))

Our pediatrician & her office manager (also a very good friend) sent up a goodie bag filled with snacks and activities. Serenity had a blast with her Play Doh.

Serenity seemed to be feeling much better today. She didn’t throw up at all & she asked several times to get out of bed. Her ANC is still at 200 and her platelets had dropped to 7, so she received 2 transfusions today (1 blood and 1 platelets). I was relieved that the doctor finally wanted to transfuse her. She’s got some petechiae again and bruising on her legs *from where the diaper rubs against them*. It was too much like when she was diagnosed, and I was trying not to freak out.

The doctor also decided that now that she’s not taking chemo she should start getting Neupogen shots daily. (Phil & I will have to administer them.) These will help to raise her ANC gradually, with the goal of leaving the hospital once it is high enough for her to ward off infection.

Today her temp climbed to 104.2 which also freaked me out but it did come down again once she got the Tylenol (which they will not give rectally due to risk of infection). So we’re making progress I think.