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!

3 comments:

Katie said...

My name is Katie Agee and I am a close friend of Mrs. Stewart's daughter, Ali. Yesterday, Ali informed me that you were looking for a part-time nanny. I am definitely interested in helping out if I can. I am 20 years old and a junior at U.C. I have been babysitting since I was 11 and I absolutely love kids. I am incredibly caring, loving, patient, and organized. If you are interested in discussing this with me further, please feel free to email me at cady_did25@hotmail.com or call my cell at 328-3555. Thank you for your time and consideration.

Lynn Ochs said...

Wow! You have been one brave girl. I'm so glad you got to go home for Christmas...Things are really looking up.

Please tell your Mommy that I am very proud of her and will continue to pray for you and for the whole family.

If she needs some help out at Loveland she should just give me a call at Hamilton County ESC.

Hugs!
Lynn Ochs
A work friend...

The OBrien Family said...

Hi Becca, Lily, Trisha & Ethan,

Your are still in our thoughts, best of luck to you in the New Year! Your strength is an inspiration.

Glad to hear you had a wonderful Christmas. That Santa guy is soooo cool!

Hugs,
Mark, Molly, Emma, Evan & Ethan