Lifting Up Serenity

What do a two year old girl and a stuffed horse have in common? Both got their “ports” accessed at the clinic today. (The horse was a much easier patient.)

Serenity had her weekly visit today at the oncology clinic at Primary Children’s Hospital. Rachelle is an awesome girl at the hospital – a Child Life specialist – and each week when we visit she spends some time playing with and talking to Serenity. Today she noticed that Serenity was carrying her stuffed horse. So Rachelle took Horse through the same process Serenity goes through at each visit. First Horse got an ID band around her leg. Then Horse got her port accessed. First we cleaned her chest in 3 different steps, and then we turned on a movie for Horse and she sat very still while Rachelle put the needle into Horse’s chest. Then she taped the needle in place and Phil carefully pretended to give Horse her IV medicine. Horse watched the movie part of the time, and sometimes she watched the IV. Then Rachelle went through the steps of taking of Horse’s chest bandage off and taking the needle out. When it was all done she praised Horse for holding so still and being such a brave patient.

Then it was Serenity’s turn.

It doesn’t get any easier, even though we’ve been doing this regularly now. We hold Serenity down and talk to her to try and soothe her while the nurse cleans her chest and places the needle. Serenity screams bloody murder the entire time, begging us to stop. It breaks my heart. We numb her chest ahead of time, so I think it is fear more than pain, and somehow that makes it even harder to watch.

Once the line is placed and her clothes are back in place, she does calm down quickly. Today she had a blood draw and then we were off to the Rapid Treatment Unit for another lumbar puncture.

Normally it takes 30 minutes or more before she wakes up and they bring us into the recovery room. Today Phil had an errand to run and I went to talk to someone in the billing department. 10 minutes later I was heading back to the RTU when I heard a page for Serenity’s parents. My heart sank to my stomach. As it turned out, she had awakened very quickly and when we weren’t there she was frantic. I raced back to recovery and she was yelling Mommy! in such a sad angry voice that it hurt my heart. I was able to calm her quickly and settle her down and within a few minutes she was sitting up and smiling again.

Serenity turned two on Sunday and we had a little party for her at Phil’s parents’ house Monday night.  She loves to tell us, “I two!” 

We are still having the hardest time getting her to take her oral medication.  Her side effects have been very minimal this month and so she is taking way less medicine than she was last month.  But she is fighting it fiercely.  We end up dosing her two or three times because she spits so much of it out immediately.  I keep hoping that she will adapt and this will get easier, because we’ll be doing this for 2 1/2 years.  But so far it’s getting harder, not easier.

Thanks to everyone for your well wishes and support.  We really feel blessed and supported by all our friends, including the ones we’ve never met.

The first week of consolidation has been easier than induction was. Monday Serenity’s numbers were good and she didn’t need any transfusions. She went under general anesthesia for a lumbar puncture and they put chemotherapy into her spinal fluid. She took a little bit longer than normal to wake up and get back to normal but before long she was feeling pretty good. She is such a happy girl.

We also started her on a new oral chemotherapy medication on Monday, 6MP. She took hardly anything last week, and getting her to take meds again has been a real challenge. She is spitting everything out! We have tried all the tricks. We flavor it, we put it in a syringe, we hold her down, and no matter how well we orchestrate it, she has managed to spit almost everything out (and most of it into Phil’s face!). I have been really worried because it’s so important that she get this medicine, and very important that the dosing is accurate.

Today was a success because Phil added it to an egg he was cooking & she ate the whole egg without complaint. BUT the medicine is supposed to be taken on an empty stomach, and we don’t know if it can be heated like that. So tomorrow we’ll try it with grape flavoring, and hope that it does the trick. (As a result of Serenity getting leukemia, I’ve made a wonderful & thoughtful new friend – nearby even! – who not only brought us dinner Monday night but also gave me some grape flavoring to try. So there are a few silver linings.)

Serenity has been shedding like crazy the past week or two, but between Monday and Wednesday she lost more than half of her hair. I was hoping to hold off on shaving her head until we got our family photos done this weekend, but by Wednesday I conceded that she was looking pretty raggedy and was probably worse off than if we just shaved it. So we did, and I struggled not to cry. She is adorable, but she looks so sick now. And she always had such beautiful long hair for her age.

This was taken in April:

(Yes, ignore the straps of her carseat please.  She’s a little Houdini.)

In May, in the hospital:

And yesterday, at Ikea:

(The sticker on her head was her idea.  She loves her bald head.)