Induction Phase

Week 1
When we brought Molly home it was a little weird because I didn't know what life was going to be like from now on. She still had her port in and the Home Health Care nurse came to show me how to administer her ceftazidime medication. Molly was still not walking so we had to carry her to the toilet every time she thought she had to go (which was VERY often... ) and she had that increased appetite because of the dexamethasone steroids so we had to carry her to the kitchen often to find something she wanted to eat. We found out quickly that her specific food craving was anything that had tomatoes in it... ketchup, spaghetti sauce, pizza, etc. If she had macaroni and cheese, it had to have ketchup on it. We also learned that it was best to make spaghetti noodles and macaroni & cheese in bulk so it was really quick to dish some out and reheat it real quick for her.

Week 2
We visited the Hematology/Oncology Clinic for the first time on Wed Nov 28th. Big Sis was at Ama's house because they don't allow siblings to come to the clinic. They took blood for her labs and then started her on a platelet transfusion before they could give her the vincristine chemo. The lab results came back and her red blood cells were pretty low but the doctors decided to hold off one more week to give her a transfusion for that. They sent us down to the Rapid Treatment Unit (RTU) to do a spinal tap again in Molly's back. For the rest of the week we just basically tried to stay busy so we didn't get bored. Even though we still took Big Sis to her tumbling and dance classes, and went shopping and whatever else we needed to do, it felt like we were just living our lives around Molly's medication and potty schedule. We had steroids first thing in the morning, ceftazidime into her port right after that, amlodipine for blood pressure at noon, ceftazidime into her port again in the afternoon, steroids at dinner time, and ceftazidime into her port at midnight. Molly was getting crankier and crankier as the week went by. We noticed that her face started getting really puffy and her belly also got big. Her hair was starting to fall out more too. We also had to have the home health care nurse come by to change Molly's port line (remove the needle, clean the area, stick a new needle and line into the port through her chest) because it needs to be done once a week.

Hair is getting thinner, cheeks are getting fatter...

Week 3
Visited the clinic again on Wed Dec 5th. They took labs through her port again, and administered the vincristine. Then we were taken back to the transfusion room where they put Molly on red blood cells and we sat there for a couple hours. Molly took a nap and I read a book. When that was finished, we had to stay for a half hour to make sure Molly didn't have an allergic reaction to the donor blood, and the oncology doctors came to tell us that we can stop the ceftazidime through her port and remove the port line. We went home and resumed life as best we could.  Things seemed a bit more relaxed without the 3x/day port medication, but I still got basically nothing done around the house because Molly needed food so often and every time she needed to pass gas she thought she had to use the toilet. I think I lost 3 lbs this week from carrying chubby Molly to the bathroom, kitchen, living room, Mommy's bed, etc. Molly gained 3 lbs from all the food and the water retention in her face and belly.

Chubby cheeks and belly

Week 4
Clinic visit on Wed Dec 12th. Big Sis spent the day at Grandma Jayne's this week. At the clinic they took labs and administered vincristine again. It was a quick visit this week since we didn't have any outpatient procedures in the RTU or any transfusions. The rest of the week was pretty much the same as last week but Molly was even more cranky and even more hungrier. We ran out of ketchup finally (that stuff really isn't healthy at all, especially for a cancer patient) and Molly had me carry her to the kitchen several times because she just *knew* that we had ketchup hiding somewhere. Molly's face is so puffy I cannot even recognize her. her hair is still falling out a little at a time, but she doesn't have any glaring bald spots yet. I was counting down the days to Dec 18th, her last dose of steroids for this phase. It was a tough week for me, because my mood hormones were low and it made me tired and irritable, which doesn't mix well with a toddler on steroids. I had to apologize several times to Molly for losing my cool and yelling at her.

Wed Dec 19th, we went to the clinic and they took blood for labs again. Her levels were improving as much as they should be. They didn't give her any vincristine this week, but they did send us down to the RTU to do a spinal tap again and to do a bone marrow aspirate (just take the marrow, instead of a chunk of bone as well). The oncology doctor gave me some papers to read through for the COG study and said that if we consented to participating in the study, we would be randomized to one of two arms of treatment; the standard treatment protocol with all the standard chemo treatments and clinic visits once a week, or a new study protocol which uses more doses of one chemo treatment and less variety of other chemo treatments and we would have to do six three-day hospital stays in the next 5 months. The doctor told me that I had a week (until Dec 26th) to make the decision to either opt out of the study or to consent and have the study decide which protocol we'd be using.

In the last couple of days, Molly's mood has improved hundred-fold and she was laughing and playing with toys for the first time in over a month yesterday, 3 days after her last steroids dose. Her face is still puffy, but it is going down. She stopped asking for ketchup and other tomato foods and is back to eating toast and cereal for breakfast instead of spaghetti. She still has most of her hair, but it is noticeably thinner. No bald spots yet.

Aww... Molly's hair found a new home (this is from one brushing)

I'm so happy that we are done with the month of steroids, and that Molly is responding to the chemo. Whichever treatment arm we end up on next week, we will have about 8 week-long "pulses" of steroids over the next 2.5 years, but I think we can handle it now that I know what to expect.

Until next time... we love you and know you are thinking of us.

P.S.

Please comment if you have anything to say or if you have any additional questions about the post above you would like answered.

Left: Molly at week 2.                  Right: Molly at week 5.