Preparing for the next phase

I'm sorry that Mommy hasn't written in a long time, but I keep bugging her to take my dictation. She continues to remind me that she doesn't have as much time to write now that we're all at home and she's back to work full-time. I guess I'm at her mercy...

I've been doing really well lately, and this Interim Maintenance phase of treatment has been very kind to me. Another reason Mommy hasn't been writing is that I'm keeping her busy! I almost feel like a normal kid again, except for the fact that I don't get to go to school or go out a lot. Laura has been taking care of me during the weekdays, and Mommy, Lily, and I hang out in the evenings and weekends. My counts have been pretty good (ANC between 600 and 1000, or so; platelets in the hundreds of thousands), and I haven't been sick since leaving the hospital. Please pray that my good health continues. I have lost almost all of the weight I had gained while on steroids, but Dr. Absalon says that I look good. I already knew that, but it's nice to hear once in a while...

I guess I've only been back at the hospital three times since the last time Mommy posted to the blog.

Once was a visit to the ER as a result of major irritation from the adhesive on my central line dressing. Normally, home health would have taken care of this, but they were booked solid that day. Fortunately for us, the ER knew we were coming, so we were treated like royalty. We didn't have to wait in the germ-filled waiting room like everyone else since they had found a very clean private room for us so that I didn't get sick. The doctor was great, and the nurse used betadine (instead of chloraprep) to clean my central line site and switched my dressing to a Tegaderm HP (hypoallergenic) dressing. The home care nurse had tried Opsite the day before instead of the regular Tegaderm because of the irritation, but it didn't stick, and it caused even more irritation. Since the dressing change in the ER (and subsequent change in orders for supplies), the inflammation has cleared up tremendously.

The next hospital visit was a clinic and OR procedure on January 16 (we had to be there at 6:30am!). While it was supposed to be a quick lumbar puncture with methotrexate and two types of chemo through my central line (methotrexate and vincristine) along with a clinic checkup, it turned out to take over half the day. The nurse drew some blood when we first got there so that the doctor could determine if my ANC had come up enough to allow me to get IV methotrexate. The day before it was at 690, and it needed to be 750. Several staff members had called in, so they were short-handed, and it took a long time to get the results back. Unfortunately, my ANC had gone down to 600, so they only put the vincristine through my central line. The doctor also prescribed a pill for me to take the next evening at dinnertime. Because the IT (intrathecal) methotrexate would seep into the rest of my body and make my counts drop dramatically, this drug he prescribed would be like an "antidote" to it.

During my current phase of treatment (Interim Maintenance), home care is coming out to take labs the day before I go to clinic each time, which is every ten days. When we were in the hospital, they were drawing my blood every morning around 4am. Since they're not getting my counts as often, Mommy and Daddy have a little more difficulty in determining what I can and cannot do, but I'm surely not complaining.

Today Mommy and I braved the snow (yeah... Mommy had a SNOW DAY, so she didn't have to take a sick day!) to travel to the day hospital for IVIG and chemo (vincristine and methotrexate). If you remember, I get the IVIG (intravenous immunoglobulin) once a month during the winter to boost my immunity. It took a few hours for the IVIG to run, and during that time, the doctor came to visit our room for my clinic visit. He again said that I looked great (thanks, Dr. Absalon :o)!), and then he told Mommy a little about my next phase of treatment. Mommy is a planner, so it is good for her to know what to expect.

Mommy and Daddy are a little afraid of this next phase (the Re-Induction phase), and rightfully so. It is supposed to be almost as intense as the first phase, except that it will not take place with me staying in the hospital. I will be on steroids again (seven days on, seven days off, and seven days on) as well as some different drugs. Some of them I took during the induction phase, and others are new to me. In addition, I will be visiting the clinic twice a week, getting blood drawn the day before each visit. The steroids were not kind to me the last time (HUGE mood swings, irritability, weight gain, etc.), but I also received them for 28 days, and I was cooped up in the hospital. Hopefully, being more comfortable in my own house will help to ease the side effects this time.

Laura is leaving us this week to return home to North Carolina, and Daddy is most likely going to take a reduction in hours at work (along with a reduction in pay) to stay home with me on weekdays during February and most of March. Mommy and Daddy have struggled with this decision, but the thought of leaving me with a nanny/sitter during such an intense phase of treatment didn't seem feasible. Lily is going to get to stay at home with us a couple of days during the week, too, and when Daddy and I have to go the clinic, she will go to Goddard (her old school). I know she's going to miss Kids R Kids (especially her best friend Maddie and her teachers), but I'm sure going to like playing with her a lot more!

Thank you again for the continuing thoughts and prayers for my good response to treatment. They have really been doing the trick lately. I definitely have tons of people who love me, and I feel so very fortunate.

1 comment:

Emily said...

Hi Becca, I'm so glad to hear you've been feeling better lately! That's really cool that your Mommy got a snow day; those were always my favorite days when I was in school too. We'll continue to keep you in our thoughts and send healing energy your way. Love, Emily