Category: Serenity

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

I have an confession to make.

We haven’t always been giving Serenity’s 6MP the way we are supposed to. Actually, I do not think that the clinic gave us any instructions aside from not combining it with dairy or citrus products. But I knew from my friends on the ALL list that it is supposed to be given 2 hours after a meal or 1 hour before (always on an empty stomach).

We tried. We tried hard. In the beginning we would wake Serenity in the night to give it to her and she did NOT like it. She would kick and scream and spit it back into our face and we quickly decided that trying to get it in her at night was pointless.

So we switched to just before bed. I should mention here that she usually nurses to sleep, but I consoled myself with the knowledge that breastmilk is not the same as cow milk, and honestly, getting her to sleep without nursing is near impossible. (Actually it IS impossible if I am also trying to get the other little ones to bed.)

So I had gotten a little lax and there were even a few times that she ate before taking the medicine, but she is so thin that I wanted to let her eat whenever she was willing.

So lately on the list there has been some discussion of just how very important it is that the 6MP (which she takes daily, by the way, and will for 2 years) be taken on an empty stomach, at night, and especially not combined with dairy or citrus. And I started to worry and feel guilty and I followed the links and started looking at some of the research.

From what I can tell the compound in cow milk that interferes with the 6MP absorption is also found in breast milk. And it really IS important that she take it on an empty stomach. So I feel horrible, knowing that I should have been more stringent about all of this.

So I’m working on getting her to take it after she goes to sleep. She still doesn’t like this, so what I’ve been doing is giving it to her before bedtime, but then waking her up a few hours later and giving her a small dose of water. That way it doesn’t matter that she spits it out and gets upset. I’m hoping after I’ve done that for several nights, I can transition to just flavoring for a few nights, and by then maybe she will be accustomed to it and fight less. At that point I can start giving the medicine along with the flavoring.

I’ve explained to her that she can’t eat after she takes the medicine, and she understands and is being a good sport about it. It’s still hard to get the timing just right, because she still expects and needs to nurse at bedtime. Phil & I think that getting a timer will help so that we can “show” her when she can eat or drink again. And from here on out, I’ll just do better.

After the last time I posted I came to the conclusion that Serenity was probably having an allergic reaction to her Septra. I didn’t / don’t know that for a fact, but I was pretty sure of it.

On Monday she was due for a CBC and Home Health informed us that we now have to pay out of pocket for home visits. So on Tuesday we took her up to Primary Children’s for the blood draw. Her legs were bruised and she seemed less energetic, so I was fairly confident that she would need a transfusion of something. As it turned out she did not; her numbers were fine.

I think the doctor and the nurse were a little impatient with all our questions. It was a busy day and they had worked us in and I kept explaining over and over that something was not right and that her symptoms didn’t make sense. The nurse insisted that it is not uncommon for the kids to get rashes that come and go during treatment for no apparent reason. I did not mention that I hadn’t given her her Septra that week because I wanted to see what would happen to her rash.

I mentioned in passing that we had not given her her dex yet because of the rash. The nurse just about fell off of her chair. Apparently when they said “hold everything,” they meant her chemo but not her steroids. I didn’t know at the time that the dexamethasone is timed to coincide with the day she gets IV vincristine and the 4 days that follow. (She had received her vincristine a few days previous.) There was much discussion about what to do and the doctor ended up coming in to see her and tell me to go ahead and start the dex.

We also resumed giving her Prevacid, which I think is what’s helped keep the vomiting at bay. I told the nurse about her bone pain and she said it could be a side effect of the vincristine, along with jaw pain. That made sense because she had complained about her mouth also and it did happen about the same time she received the vincristine.

Serenity is doing well and back to taking her oral chemo as well (methotrexate and 6MP). Her rash has gone away again. She is due for more Septra tomorrow and the next day, so we will see what happens when I give it to her.

We have so much else going on right now. Life is crazy and it is such a relief to see her doing so much better.