Ok, ok, ok, ok... Good news first! I get to go home on Tuesday!!!!! Bad news, the doctors say the tumor inside my belly has already shrunk and they think the tumor is wholly self-contained.... Oh wait, that's good news! Even better, they say it responded much more easily than expected; especially for the originally lower dosage. Speaking of...
On Tuesday, I will have just finished my first round of chemo, the strong stuff, in 5 days. I then get to recover, smile and be at home for over 20 days. Then it's another round of chemo, rinse, repeat for 9 months. Afterwards, they'll take a look at my expectedly dminishing tumor and decide the best way to remove it. But right now, I'm just happy to be going home.
Before I do, a few things.... Some of the past few days have been pretty good! In fact, this past Saturday late night was a turning point. Somewhere around midnight I felt like playing Hide'n'Go-Seek. (It had been awhile.) Anyways, wouldn't you know it.... Papa was happy to play with me! :) He's funny. But he's not very good at hide'n'go'seek. I know the trick. All I have to do is cover my eyes and he can't see me anymore... GENIUS. Invisibility is awesome! But he's a good sport, so i gave him a high-five for playing with the big dog, that's me. Then I went back to playing with my cars.
Oh my, I forgot to mention the grand homecoming awaiting to be graced by my presence. I have heard stores about all the kinds of help being offered to me and my family. They've scrubbed my house sparkling clean and free of any potential germs. This is enormously important for my health and chemo-ill-affected immune system. I hear they've cooked too! So to all of you, thank you so much for your prayers, travel, thoughts, cooking, cleaning, love and anything you've done to try and help me, my Mommy and my Daddy. We feel very blessed.
Tuesday, February 24, 2009
Saturday, February 7, 2009
*CHOO* *CHOO* Little William that Will....
"Little Engine" is possibly one of my more favorite stories, not quite sure yet because I haven't actually read the book. Maybe I should get my own book. Especially since I'm now Stage 3! But just so everyone knows, my neuroblastoma is "high risk" which is worse than "intermediate" but Stage 3 instead of Stage 4 is huge. Like giant mound of mashed potato good. Roller coasters might be scary but they surely aren't always bad.
And more good news, a few days ago I smiled for the first time since I've been sick! It made everyone SOOO happy they started taking pictures. *sigh* It's hard being famous. Especially since I've got a new keyboard to practice my awesome piano skills, and it's no Fisher Price keyboard either!
Let's see... what else is going on with me... Since they've upped the intensity of my chemo the doctors do expect me to have some hearing loss. It's not the best of news but it's wayyyy minor compared to being Stage 3! And besides, hearing isn't needed to hear love, well wishes and prayer. I will say this though.... if hearing loss becomes something I have to deal with, I'm requesting a GI Joe hearing aid! So now everyone knows, and knowing is half the battle. :) (HEY, I smiled again!)
p.s.
I apologize for my muse. It's so hard to find good help.
And more good news, a few days ago I smiled for the first time since I've been sick! It made everyone SOOO happy they started taking pictures. *sigh* It's hard being famous. Especially since I've got a new keyboard to practice my awesome piano skills, and it's no Fisher Price keyboard either!
Let's see... what else is going on with me... Since they've upped the intensity of my chemo the doctors do expect me to have some hearing loss. It's not the best of news but it's wayyyy minor compared to being Stage 3! And besides, hearing isn't needed to hear love, well wishes and prayer. I will say this though.... if hearing loss becomes something I have to deal with, I'm requesting a GI Joe hearing aid! So now everyone knows, and knowing is half the battle. :) (HEY, I smiled again!)
p.s.
I apologize for my muse. It's so hard to find good help.
Wednesday, February 4, 2009
Rollercoaster
Good news, bad news, good news, bad news.... up and down I go. I'm not tall enough to ride a roller coaster, unless Grandma buys 6-inch flip-flops like she did for Mommy at Six Flags, but I think I understand the sensation and its lure... also, I sort of have my own roller coaster. It's not always fun, like today, but everyone seems so thrilled to ride with me!
The latest roller coaster news is a bit of a dip. It feels deeper than it should because I was up so high from the latest news about maintaining Stage 3. This morning, my doctors re-categorized me as Stage 4, and I'm now high-risk as opposed to intermediate. My passengers seem to feel the news more than me, especially Daddy because he sits with me in the VERY back of the roller coaster. For those of you without 6-inch flip-flips to ride a roller coaster, the back of a roller coaster usually descends from a peak much more quickly than the front. This means Daddy experiences all the valleys of my roller coaster trek more than anyone else despite the fact all we want to do is get off the coaster and go for cotton candy, funnel cake, turkey leg, fried oreos.... maybe all of them? No no, he's a good Daddy. He'd frown, shake his head and say something like, "Those are bad for you. Now pick 3 of the 4 and don't tell Mommy." YUM!
So how'd my coaster get to this precipitous drop? *sigh* When the doctors originally started me on this chemo-thing they were expecting certain signs of its effectiveness but unfortunately those signs were either not prominent enough or non-existent. When they first started it, my Daddy thought the chemo looked like Tequila. Anyways, I guess they forgot the worm and now my chemo dosage and schedule have changed. I just hope they include the worm this time, or at least Jameson, Daddy knows I'm Irish.
I'm still a little hazy on the treatment and scheduling but the way I understand it....
My total treatment will be 9 months, this includes chemo and two bone marrow transfusions. I was worried about a bone marrow match but the doctors will use samples of my own bone marrow for the transfusions. I asked about running out of samples but apparently the stuff regenerates so no need to worry. Afterwards, they hope to remove this unwelcome tissue from my tummy.
*WHOA* Sorry, even though the coaster is on its way down we sometimes have lil' upswings. The old dosage of chemo is finally leaving my body and allowing me to recover. I am talking more which is nice... don't get me wrong, this "interweb" place is neat and all but I'm much more interactive and WAYYYY better looking in person.
HOWEVER.... I'm not quite as good looking as this other guy I saw recently. I couldn't see him at first with all the blankets and stuff, but I asked, "What's that?" and I was informed "that" was my brother, Reilly! I don't know much about my little brother; he is stubborn about eating (gets that from Mommy), he's smaller than me and I could totally take him, he gets to go home and he's doing quite well. *WHOA* Yeah, that was another upswing.
Up or down, I hope you continue riding with me... but you can't have my Daddy's seat.
The latest roller coaster news is a bit of a dip. It feels deeper than it should because I was up so high from the latest news about maintaining Stage 3. This morning, my doctors re-categorized me as Stage 4, and I'm now high-risk as opposed to intermediate. My passengers seem to feel the news more than me, especially Daddy because he sits with me in the VERY back of the roller coaster. For those of you without 6-inch flip-flips to ride a roller coaster, the back of a roller coaster usually descends from a peak much more quickly than the front. This means Daddy experiences all the valleys of my roller coaster trek more than anyone else despite the fact all we want to do is get off the coaster and go for cotton candy, funnel cake, turkey leg, fried oreos.... maybe all of them? No no, he's a good Daddy. He'd frown, shake his head and say something like, "Those are bad for you. Now pick 3 of the 4 and don't tell Mommy." YUM!
So how'd my coaster get to this precipitous drop? *sigh* When the doctors originally started me on this chemo-thing they were expecting certain signs of its effectiveness but unfortunately those signs were either not prominent enough or non-existent. When they first started it, my Daddy thought the chemo looked like Tequila. Anyways, I guess they forgot the worm and now my chemo dosage and schedule have changed. I just hope they include the worm this time, or at least Jameson, Daddy knows I'm Irish.
I'm still a little hazy on the treatment and scheduling but the way I understand it....
My total treatment will be 9 months, this includes chemo and two bone marrow transfusions. I was worried about a bone marrow match but the doctors will use samples of my own bone marrow for the transfusions. I asked about running out of samples but apparently the stuff regenerates so no need to worry. Afterwards, they hope to remove this unwelcome tissue from my tummy.
*WHOA* Sorry, even though the coaster is on its way down we sometimes have lil' upswings. The old dosage of chemo is finally leaving my body and allowing me to recover. I am talking more which is nice... don't get me wrong, this "interweb" place is neat and all but I'm much more interactive and WAYYYY better looking in person.
HOWEVER.... I'm not quite as good looking as this other guy I saw recently. I couldn't see him at first with all the blankets and stuff, but I asked, "What's that?" and I was informed "that" was my brother, Reilly! I don't know much about my little brother; he is stubborn about eating (gets that from Mommy), he's smaller than me and I could totally take him, he gets to go home and he's doing quite well. *WHOA* Yeah, that was another upswing.
Up or down, I hope you continue riding with me... but you can't have my Daddy's seat.
Subscribe to:
Posts (Atom)