Category: Serenity

The past few days have been a treasure. Serenity has been more like her old self than I had dared to hope for. I am glad, for so many reasons.

A few days ago I overheard my 7 year old tell her cousin how lucky she was to have a new baby sister. Her cousin said, “But you have Serenity!”

Gibson responded with a heavy sigh. “Yes, but every time I come near her she cries.”

It’s true. Up until this week Serenity has been very temperamental. She doesn’t want people to look at her, let alone touch her. But hearing Gibson’s words broke my heart. I hadn’t realized just how much Serenity’s behavior was hurting her siblings.

This week things have been better. She has interacted with her siblings, and laughed more in two days than I’ve seen all month. She has been a joy to be around and behold. She’s not 100% back, but she has been happier these past few days than I would have believed possible in such a short time.

Yesterday we got a fabulous care package from a very sweet mama and her darling girls. I can’t even begin to describe how much thought and effort went into putting this together, but there was something for everyone in the family. Even me. Serenity loves her new books and toys.

We spent so much time outside blowing bubbles.  It was adorable watching Serenity.  She wanted to blow them herself, so she would hold the wand right up next to her lips.  A few times she slipped it inside and then quickly realized that bubbles don’t taste good, not even a little.

In the evening Phil and I took the younger kids to the park.  We brought pizza and Sprite.  The children were pretty much in heaven.

We had another clinic visit today.  It went pretty well. I was concerned about Serenity’s port site because I had noticed it was puffier than normal, and that she had an accompanying swollen area on her back. The nurse practitioner who examined her said it was most likely fat that had accumulated in that area due to the steroids. You can kind of see what I mean in this photo:

See how the left side of her chest appears swollen?

Serenity’s lab results came back and her numbers were good. She has continued to build up white blood cells, red blood cells, and platelets over the past week. She did not have to have any chemotherapy through her port today, so our stay in the oncology clinic was shorter than in previous weeks. She still has thrush, so I was able to convince the doctor to prescribe me more diflucan. I took two pills last week, and Serenity has been on nystatin for a couple of weeks. I wish the nasty stuff would go away; it makes nursing so difficult.

After the oncology clinic, we headed downstairs to the Rapid Treatment Unit, where her spinal tap and bone marrow aspirate were to be performed. They let us carry her back and hold her while they pushed something into her port line, which made her fall asleep almost immediately. I always hate seeing her like that. Once she fell asleep they put a breathing mask over her face and we left the room. I went to pick up the prescriptions – almost $800 for 3 drugs! – and Phil went to the cafeteria to get us something to eat.

It was probably about 45 minutes until they came and told us that Serenity was waking up. I love being at a children’s hospital! The first thing the nurse asked me was if I wanted to nurse her. It helped to settle her down. She was groggy and probably in some pain, and just not a happy camper.

We waited a bit for her to wake up and then it was time to go home. It didn’t take long for Serenity to perk up and tell us she was hungry. (She can’t have anything to eat on the mornings of her procedures because of the anesthetic.)

Today was the last day of our first month of chemotherapy, referred to as Induction. I was under the impression that we were going to monthly visits rather than weekly, but that’s not correct. Next week we start the second phase of chemotherapy, referred to as the Consolidation phase. We will still be going in weekly. For the first three weeks she will continue to have general anesthesia and receive intrathecal chemotherapy (it will be injected into her spinal column). She won’t have to take any steroids this month, but she will start getting oral chemotherapy at home.

We were able to get all of our questions answered about her treatment protocol, the clinical study (which was closed, so we are not a part of it), and what to expect for the next month. This will be a rough month just like last month, especially with so many lumbar punctures, but it’s my hope that she will be better able to weather it without being on the steroids.

Today was Serenity’s last day of steroids this month. I’m very happy for her. I swear, I can see her face getting puffier by the hour.

In addition to being extremely moody and eating around the clock, her feet are very, very dry and scaly.

She tugs on her eyelashes a lot, which really bothers me, and she is sweating like crazy. She hasn’t run a temperature but she wakes up in the mornings and her clothing and the bed are quite wet. The first time it happened I thought her diaper had leaked.

She has a clinic appointment on Monday, with another lumbar puncture (spinal tap) to check for leukemia in her spinal fluid.  Aside from that, I’m hopeful that she will feel pretty good next week.  She will be off almost all of her medications until the end of June.

Serenity has been eating like crazy lately! The other night she was up every 2 hours asking for something to eat. (This is in addition to nursing nearly all night long.) I took a picture of her eating a little bit of everything at 2:00 a.m.

My sister & I were talking yesterday about the fact that Serenity has changed since she got really sick. She has withdrawn into herself, probably as a result of everything she’s been going through. It’s so sad to see, and to think about all the things she would be doing if she didn’t have leukemia. She’s become so skinny, with a huge distended belly, and dark puffy circles under her eyes.

After this month she will only get chemotherapy once a month, and she will only have to take steroids when she is doing the chemo. I hope that we will start to see more of the old Serenity when that happens.

Although it only surfaces on occasion, Serenity still has a sense of humor. While most of the time she looks like this:

When she does something she thinks is funny, we are treated to her smile:

For some crazy reason, she laughs any time someone says, “Don’t blink!” to her. She gets a big kick out of undoing the tabs on her diaper.  Sometimes she will try and stick her finger in my nose while we are nursing and when I pull away she giggles. It’s the best sound in the world.

You would not believe how exhausting it is taking care of Serenity. It doesn’t sound like a lot of work, but we are constantly up and down trying to honor her every request before she changes her mind or gets frustrated. The steroids she is on make her very angry, so there are constant temper tantrums, followed by head banging or face scratching, which is a concern because we don’t want her to bleed.

Phil and I are both happy to do it, and we do a pretty good job of trading off and reading each other’s mind, but some days seem never ending and there is just no break. Serenity asks for eggs at least once an hour, and more often every 30 minutes. She loves to be involved in the process by handing us the eggs, and she wants them fried, so there is no making them ahead of time. We have to follow the same routine every time. Put the coconut oil in and she tells us it’s “Yummy!” Then she hands us the eggs, and we make either 1 or 2, Serenity decides. She closes the egg carton. Heaven forbid I get ahead of myself and close it for her, then there is a complete meltdown. She closes it, hands it to me and I put it away, she points out that the pan is hot and that the oil is “Popping!” and then she hands me the spatula, the egg gets flipped, moved to the plate, and then carried to the table. She reminds me that the egg is still “Hot! Hot!” and by the time I have her settled at the table and the egg cut up she is ready to pronounce it “Warm!” and eating can commence. Usually she eats the whole egg and then requests the next food item: yogurt, cheese, milk, water, juice, bagel, tortilla with (peanut) butter, chips, M & M’s, corn, banana, and sometimes the whole lot. I’m not exaggerating. She eats so much that Phil and I wonder aloud where she is putting it all.

Up until now she has been constipated and really uncomfortable. After talking with the doctor yesterday we switched her from Miralax to Senna, and it has done the trick. She has been pooping all morning long. She can’t stand to be in a wet diaper, so the second she pees she lets us know that she has to be changed now! She has been asking to poop on the potty each time. I cringe at the thought of her being in any bathroom (the germs!) but I think this girl will be potty trained before her big brother.

The doctor at the clinic prescribed Diflucan for me, so hopefully that will clear up our yeast. I would have preferred to get 3-7 pills but I am grateful for anything.

Some friends and church members have offered to take my other kids occasionally so that I can focus on Serenity. I cannot tell you what a huge help this is to me. Not only are my other kids having a blast at other homes (some have pets! or babies!), but it is really hard for me to meet the needs of the little ones and still attend to Serenity. She is so moody and sick that if we don’t spring into action the second she asks for something she begins crying almost immediately and it’s a lot of work to get her calmed down. I hope that I haven’t made her sound spoiled; this isn’t it at all. Because she is in so much pain, and because she can’t move anywhere by herself, she is completely dependent on us to help her with everything. I know it is very frustrating for her. Less than a month ago she was running and yelling and playing all hours of the day.

As an aside, I have spent the last few days consuming the posts on Isabel’s blog. Isabel was diagnosed with leukemia  almost two years ago. Like Phil and I, Isabel’s mom blogged everything. I cannot tell you how comforting it is to read her thoughts. Much of what I am thinking, wondering, & feeling I see reflected in Isabel’s blog. I’m able to see the changes in Isabel in the photos: from emaciated and sick like Serenity is, to a happy and healthy looking little girl. Isabel went through many of the same procedures and experiences that Serenity is undergoing now.

In reading Isabel’s blog, it really hit home to me what a few people have said. By chronicling our journey with Serenity, we are hopefully creating a place for future parents and loved ones to feel at home and understood when their child is diagnosed with leukemia. There is nothing like knowing that someone else understands exactly what you are going through.