390 replies to this topic

[giraffy]

Argh. She didn't make her counts today. No chemo.

I'm leukemia today. Bastard.

[VibrantEcho]

suck.

[Dr. Dolemite]

Argh. She didn't make her counts today. No chemo.

I'm leukemia today. Bastard.

I haven't been on the forum much in recent weeks, so I apologize, as I'm somewhat out of the loop . . .

So after one more round of regular chemo, she goes on maintenance? How long does that last? Is it easier than chemo?

[giraffy]

She'll be in maintenance for two years. It's less intense - chemo at home (in a pill) daily, plus itrathecal treatments (chemo to her spinal fluid via lumbar puncture) every 6 weeks. she'll be cleared to do more stuff , have more freedom.

I blogged about it here in more detail:
http://365awesomeday...aintenance.html

But that's the general idea.

[Dale1123]

Praying for you and your daughter Giraffy. I have been in a similar position....my grandfather had leukemia.

Hopefully with the research currently being developed/tested steps can be taken to stop anybody else from going through what you are. I am proud to say that I work at the cutting edge in cancer therapy and nanomedine and continue the work in the hopes that cancer can become a thing of the past.

[Nemeweh]

So any idea when she'll get to retest for her last treatment before Maint?

[giraffy]

Today!

And she got chemo today!!

We're waiting for her maintenance plan (she's part of a clinical trial, so each stage is randomized), should have that when we meet with the oncologist on the 13th.

[Dr. Dolemite]

Today!

And she got chemo today!!

We're waiting for her maintenance plan (she's part of a clinical trial, so each stage is randomized), should have that when we meet with the oncologist on the 13th.

Awesomeness!

I know very little about cancer-treatment protocols, but this sounds like a HUGE milestone

[Labyrinthine]

Go Gabby! Kick that cancer's butt!

[mdw2006]

Go Gabby! Kick that cancer's butt!

+1000

[angeleyeskkhr]

Great job Gabby!!

[Nemeweh]

YAY!


I know she's gonna love being able to do more and go more places. When can she head back to school? Any idea yet?

[giraffy]

Next fall she should be able to start kindergarten on schedule, if we want her to. She'll be just under a year into maintenance, so if all goes well...

A friend of mine, whose son is EXACTLY a year older and diagnosed EXACTLY a year earlier (like, to the day, eerie...) is starting K next week and she's a bundle of nerves. It seems like a bit of a hassle - she'd have to be careful and avoid sick kids, be careful of her port while she's playing.... So, I'm like 94% on the send her off to school train. The other 6% screams homeschool for a year.

[Nemeweh]

Next fall she should be able to start kindergarten on schedule, if we want her to. She'll be just under a year into maintenance, so if all goes well...

A friend of mine, whose son is EXACTLY a year older and diagnosed EXACTLY a year earlier (like, to the day, eerie...) is starting K next week and she's a bundle of nerves. It seems like a bit of a hassle - she'd have to be careful and avoid sick kids, be careful of her port while she's playing.... So, I'm like 94% on the send her off to school train. The other 6% screams homeschool for a year.

Yeah. I would be totally freaked out. Have you watched a class full of kindergarteners? They are ... gross. Very cute, but ... yeah. We've never had an instance of the Flu (DD was a particular clean little critter) until DS brought it home last December. If she's only 5, I might refrain until she was 6. I guess it would depend on when her birthday is, etc..

I'm sure she ready to go already.

[giraffy]

She'll be 5 October 11th, so she will already be an "older" kindergartener. I kind of think holding her back will do more harm than good... She's READY now.

[angeleyeskkhr]

She'll be 5 October 11th, so she will already be an "older" kindergartener. I kind of think holding her back will do more harm than good... She's READY now.

That is how DD was. I hated "holding her back.". Stupid state rules.

And as it is now, they are giving me lip about proof of residency. My grandmother was trying to be helpful so set up electricity and water in her name when we first moved down here. We still haven't switched it due to the need for deposits (stupid people), and our lease did NOT get updated each year (we are month to month but no plans of leaving anytime soon).

Well they claim they can ONLY accept water/light bill or copy of lease. Not my DL. Not a copy of my checkstub. Not even my freaking car insurance or cable Internet bill. Seriously? My state issued proof of residency isn't good enough?! They said they are going to "look into it" and get back to me.

Edited by angeleyeskkhr, 06 September 2011 - 12:22 PM.

[slow_but_eventual]

I thought of you today when there was an ad campaign type message to raise funds for cancer treatments for little kids... one of the voices on the radio ad was what sounded like a 4-yr old saying:

"My name is Dillon and I beat Cancer."

Just thinking about it brings tears to my eyes, I'm a real big old softy when it comes to things I can't help fix that are so horrible to innocent kids and I truly don't know what to say! But, my thoughts are definitely with you & yours during and after all this struggle! My heart just feels so heavy & I probably sound ridiculous, but I am so so so empathetic Blessings to you & all kick butt & be strong thoughts that I better stop now LOL. I love your blog posts

[Tealeaf]

She'll be 5 October 11th, so she will already be an "older" kindergartener. I kind of think holding her back will do more harm than good... She's READY now.

Makes her a Libra right? We are the best

[giraffy]

Maintenance is going well, so far, except for th THIRTEEN pills she has to take on Thursday's, and the no dairy after 4.

Gab and I went to the local Light the Night walk over the weekend (H was working and the other two were uninterested ). Confession: I had to take off early. We left before the walk. I just couldn't be there, with all those people, and seeing her. It was too much.

[giraffy]

I can't remember if I mentioned this, but Gab is the Honored Teammate for TNT's OC Marathon team this winter. We hung out at practice two weekends ago, and greeted the runners coming back in, and gave all the women running the Nike Women's Marathon their kick-off bags. And play with dogs.


A tiny part of Team Gabby....


So far, this season, Team Gabby has raised over $55,000 to research and fight blood cancers

[squirrelgirl]

I can't remember if I mentioned this, but Gab is the Honored Teammate for TNT's OC Marathon team this winter. We hung out at practice two weekends ago, and greeted the runners coming back in, and gave all the women running the Nike Women's Marathon their kick-off bags. And play with dogs.


A tiny part of Team Gabby....


So far, this season, Team Gabby has raised over $55,000 to research and fight blood cancers

Wow!! $55,000??? That's awesome!!!

[butterflywings]

Next fall she should be able to start kindergarten on schedule, if we want her to. She'll be just under a year into maintenance, so if all goes well...

A friend of mine, whose son is EXACTLY a year older and diagnosed EXACTLY a year earlier (like, to the day, eerie...) is starting K next week and she's a bundle of nerves. It seems like a bit of a hassle - she'd have to be careful and avoid sick kids, be careful of her port while she's playing.... So, I'm like 94% on the send her off to school train. The other 6% screams homeschool for a year.

Yeah. I would be totally freaked out. Have you watched a class full of kindergarteners? They are ... gross. Very cute, but ... yeah. We've never had an instance of the Flu (DD was a particular clean little critter) until DS brought it home last December. If she's only 5, I might refrain until she was 6. I guess it would depend on when her birthday is, etc..

I'm sure she ready to go already.

DD's been in Kindergarten what 6 weeks? And she's already had para pertussis, a cold for almost a week, and now has gastroenteritis. This is ridiculous. The teacher said all the kids in the 2 Kindergarten classes and the 2 first grades are sick constantly, and it's not just DD. My older 2 kids are just fine. I figured DD would get sick, but she's barely had a healthy day since starting.

[baby duck]

Next fall she should be able to start kindergarten on schedule, if we want her to. She'll be just under a year into maintenance, so if all goes well...

A friend of mine, whose son is EXACTLY a year older and diagnosed EXACTLY a year earlier (like, to the day, eerie...) is starting K next week and she's a bundle of nerves. It seems like a bit of a hassle - she'd have to be careful and avoid sick kids, be careful of her port while she's playing.... So, I'm like 94% on the send her off to school train. The other 6% screams homeschool for a year.

Yeah. I would be totally freaked out. Have you watched a class full of kindergarteners? They are ... gross. Very cute, but ... yeah. We've never had an instance of the Flu (DD was a particular clean little critter) until DS brought it home last December. If she's only 5, I might refrain until she was 6. I guess it would depend on when her birthday is, etc..

I'm sure she ready to go already.

DD's been in Kindergarten what 6 weeks? And she's already had para pertussis, a cold for almost a week, and now has gastroenteritis. This is ridiculous. The teacher said all the kids in the 2 Kindergarten classes and the 2 first grades are sick constantly, and it's not just DD. My older 2 kids are just fine. I figured DD would get sick, but she's barely had a healthy day since starting.

Wow!?! Really? You are going to freak me out a little. DD is in kinder this year, too; and we've had nothing. She's sniffling a bit right now, but I'm sure it is allergies because I've had the windows open for almost 2 weeks now. I've actually expected her to be sick because her white counts are always wonky and no one can explain why.

She's really good about hand-washing and using hand sanitizer when she can't though, so there's that.

As long as the adults that need to know are aware of the port and the immune system issues, they can be a little extra vigilant, too.

[giraffy]

My friends son starter K this year, and also has ALL. He has had no problems yet - she communicates with the teacher and the principal, and everyone is aware and just keeps an eye on things.

There's also another little boy with ALL in his class. Crazy