1.26.2009

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.

1.07.2009

Hangin' in there

Lily and I loved our new kitchen from Santa (and Nana and Papa)!

All aboard! This pic was taken at the Duke Energy train show downtown.


Goggle girls!


Another present I was excited to see Lily open...


A HUGE thank you to Great Nanna's church for the beautiful prayer shawl!


The Ward grandkids (me, Lily, Rachel, and Ricky)


I loved the trains (and holding the cookie) at the train show.


Goggle gnome


Kniskern grandkids (me, Mason, Lily, and Avery) in front of Nanna B. and Poppa's big tree


"I got a MICROWAVE!" (that's what I kept yelling)


Fashionable girl


BIG elephant from Nanna B.!


Daddy and I played like rock stars!


I really got the hang of opening presents this year, and I kept saying, "More presents!"



So, it's been a while since I've updated you, but I've been so busy! Mommy was off work during Christmas break, and though I kept telling her that I wanted to update the blog, I didn't give her time to do it. Now that school is back in session and Laura is back from North Carolina, I have a little time to share what's been going on...


Knock on wood, but I've been healthy (except for the whole leukemia thing) since leaving the hospital. My counts stayed up for a while, but after a couple of increasing doses of methotrexate, my ANC was down to 360 this week. Unfortunately, that means that my immunity is down, and everyone needs to be extra vigilant about washing their hands and staying away from me if they have a virus or infection (yes, even the sniffles).


Since I last wrote, we've been to the hospital twice... both planned visits for chemo. On the 27th, Mommy and I visited the first room we stayed in on A5S at Children's (552). The clinic and day hospital were closed because it was a weekend (and holiday). It sure looked different with a "big girl" bed in my old room, and I really enjoyed playing with the control panel on the side of the fancy bed. Ann from Child Life took care of me, having lots of arts and crafts waiting, as well as a fun kitty cat pillowcase on my pillow. It was nice to see Nurse Kimberly again, too, especially since I didn't have to stay overnight that time.


On the third and fourth days after getting chemo, my legs typically start hurting, but this time, I started moving my jaw back and forth, too. The doctors said this is normal, but I'm certainly not used to it. We had a pretty big break from dealing with "medical issues" during the holiday, and it was so nice. I have gotten into my routine of taking Bactrim (yummy pink medicine that prevents me from getting pneumonia) orally every twelve hours on Monday, Tuesday, and Wednesday; other than that, I just need to do mouth care three times each day. That is simply swishing a green spongy wand in some sweet-tasting yellow stuff (called Nystatin) and twirling it in my mouth, then following that with a different green spongy wand in a clear minty liquid (called Biotene) swished through my mouth. Though I don't really like it, it is supposed to keep me from getting mouth sores, and so far so good.


I was back at the clinic yesterday with Daddy and Mommy for chemo (I go every ten days during this phase of treatment). I only got Vincristine, though, since my ANC was too low to get the Methotrexate. Dr. Absalon thought I was doing well, and he answered lots of questions for Mommy and Daddy about the next few months and then the two years of "maintenance." Unfortunately, Mommy and Daddy said that they were disappointed, and Mommy looked like she was going to cry on the way home. As I listened more, it sounds like Mommy and Daddy thought that the maintenance phase (a period of two years) was simply entail me going to the clinic for check-ups once a month but that the chemo would be over before this summer. Apparently, I will still get chemo during the two years of maintenance (every day, as a matter of fact), but it will supposedly be much lower in dosage, mostly at home, and I might even get my hair back during that time. Those of you who know Mommy know that she's a planner, and this is throwing her for a loop! We'll deal with it, though...


Another bit of news, and a plea for help -


My nanny (Laura) is sadly only going to be with us until the end of January, so Mommy and Daddy are searching for someone to take care of me from the beginning of February until mid-June, when Mommy will be home for the summer. I'll be allowed to go to school in the fall, so we just need someone for about four and a half months. If you know of anyone I would like and who would take good care of me during the weekdays (someone who is reliable, mature, loving, and who can handle my special needs), please let Mommy or Daddy know. Lily and I are pretty bummed that Laura will be leaving us... we're just now getting into routines, and she's liking the fact that we want to sit with her at the dinner table and are asking her to do things for us. We understand, though. I couldn't leave my family for that long either...


Other than what I mentioned, no news is good news. We had a terrific Christmas and break! Lily and I played, we got lots of fun gifts (and I SO enjoyed opening them this year), and we spent quality time with Daddy and Mommy. Some of the other people we were able to see: Uncle Rick, Aunt Louisa, Ricky, and Rachel; Uncle Jon, Aunt Renee, Mason, and Avery; Great Nanna (and Nimmy); Nanna B. and Poppa; Nana, Papa, and Baba; and Great Nana and Great Papa.


Again, on behalf of Mommy, Daddy, Lily, and me, we would like to thank all of you for your continued thoughts and prayers. Your support has been tremendous and inexhaustible, and it has come from sources we didn't even know existed. If we have failed to thank you properly, please forgive us and blame it on Mommy not being able to keep up with everything. We are so very appreciative to have such wonderful people looking out for us!