Monthly Archives: March 2013

Current Treatment (AKA Long-Term Maintenance)

Well, we haven’t written any new posts in a while because there really hasn’t been a lot to say! Which is good! Since her last hospital stay at the end of February, Emily has been healthy and doing well. We saw her oncologist two weeks ago, and he was very pleased with her overall health. She has FINALLY gained 1 pound, which puts her at 23.6 lbs, just shy of the 24 lbs she was when diagnosed 13 months ago. She has also grown 1.5 inches taller over the past year, so while she is still quite tiny, she is growing, praise God!

Emily and her best friend, Kayla, who is ten weeks older.

Emily and her best friend, Kayla

Many people ask whether or not Emily is still in treatment and what her future looks like. She is in the Long-Term Maintenance term of her treatment, which will last until July 2014. This is what that looks like:
* every day she takes a chemo pill (6MP) at home
* once a week she takes a bolus of a second kind of chemo (Methotrexate), 4 pills at a time at home
* once a month she takes a round of steroids (Prednisone), twice a day for five days at home
* once a month she gets a third chemo (Vincristine) through her central line at the Cancer Center
* once a month she gets an antibiotic infusion (Pentamidine) through her central line at the Cancer Center
* Her maintenance treatment is counted in three-month cycles. During the first two months of every three-month cycle, so 8 times in a year, she gets a fourth chemo (Methotrexate) into her spinal fluid via a spinal tap.
* The Home Health Nurse also comes out once a month to draw labs, and if Emily’s IgG counts are low, she goes to the Cancer Center for an IVIG transfusion.

All in all, the current treatment has been very relaxing! Gone are the daily trips to the Cancer Center, gone are the twice-a-week visits by the Home Health Nurse, and gone is the constant worry about infection. We’re still very careful, of course, especially since we now know Emily’s antibodies don’t work at all even though her ANC is high, but we don’t feel as consumed by her treatment as we have.

Emily has been handling her treatment really well. The one week of the month when she receives her spinal tap, Vincristine, antibiotic, and steroid are her worst. She is tired, weak, grumpy, sometimes has full-blown roid rages, struggles with constipation, doesn’t sleep well, and doesn’t eat much (the steroids make her hungry, but the nausea and general malaise kill her appetite). We are learning to prepare for this week by stocking tempting foods, prophylactically giving Colace (a stool softener) and nausea meds, and trying not to plan too much out of the house. It’s a good week to sit at home and read 🙂

I, personally, have struggled with my emotions and thoughts recently regarding Emily’s future -I may write about it soon -but there are many days when our family feels almost normal. The boys are all playing baseball again this year


The girls play together, brushing each other’s hair

brushing hair

and we’re able to focus on things other than cancer. It’s good.

Prayer Requests:
We have met many precious friends who are also undergoing medical treatments, and a couple of them need prayers. Amanda, 16 years old, beautiful, kind, loving, and brave, who I can’t write about without crying, is fighting recurrent progressive rhabdomyosarcoma. Her cancer came back and spread. Please, please pray for a miracle.
Olivia, who is the same age as Emily, is in kidney failure. She has a rare, genetic kidney disease that is currently in remission but is not curable. She will deal with it her whole life, and she needs prayers to have a whole life. Her twin sister also has the disease, but praise God she has not had the fight Olivia has had.
And please praise God with us for Emily’s health! We feel very lucky that she is responding to treatment. Also thank God with us for her team of doctors. They are simply amazing, and I am so grateful God chose them to care for Emily.