Category: Leukemia

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 She has withdrawn into herself, probably as a result of everything she’s been going through.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.

Serenity cried a lot and seemed out of sorts on the trip up. We gave her oxycodone with her lunch because she was in so much pain. So it was a pleasant surprise at the clinic to find out that her numbers were high enough that she didn’t need a blood or platelet transfusion. Up until now she has had them weekly, often more frequently.

So rather than our visit taking all afternoon, we just hung around for a bit until her chemo was ready. In the meantime the oxycodone kicked in and she played some and ate quite a bit.

On the way home from the clinic we stopped off at Serenity’s awesome pediatrician’s office where she was greeted by lots of staff who hadn’t since her since the day of her diagnosis. By this point she was feeling poorly again so she didn’t get to enjoy the presents they gave her.

Then we went next door to visit my sister in law, who just had a baby girl. I forgot to take a photo but her baby is so adorable and sweet. There is nothing like holding a newborn, just a few hours old and fresh from God. Serenity perked up a little bit because she loves babies so.

Finally it was time to go home.

It is so nice on clinic days (or any other long day) and be able to pop a Dream Dinners meal in the oven. The meals are all prepared ahead of time and frozen, so I just stick the pan in the oven & when it’s done clean up is easy. The ladies at Dream Dinners even did all the prep work for me when they heard about Serenity’s leukemia. I can’t say enough good things about Dream Dinners. So far we have only tried a few things but every one has been really delicious!