Monday, May 5, 2008

Done

Myla's ANC jumped to 1,459 today, which meant that she is now strong enough to begin another round of chemo. However, too much time has passed since her last round, and her primary doctor is strongly leaning toward NOT having Myla complete the fifth and final round of her chemo treatments. Discussions are still underway, but it appears that we are not heading back to Riley Hospital for another long inpatient stay.

Is this good news? Could be. Generally, I think it is. Going through with another round of chemo could be too toxic for Myla's system, and it's appears that this is exactly what may have caused Myla to land in the ICU during the previous round. Preventing her from undergoing this again sounds like a good thing. On the other hand, not completing the final round slightly decreases her chances for survival overall. So, instead of Myla having a 50% chance of reaching her 5th birthday, the odds drop to 45%. Not good. However, our primary doctor feels that avoiding the potential danger of the final round, which could kill her, outweighs the slight decrease in overall survival odds.

Further complicating the picture is the matter of timing. Because so much time has passed since the end of the 4th round of chemo, the 5th round would be less like round 5 and more like a random round 1. In other words, the sequencing of the treatment has been disrupted by the long pause we've been living, so there may not be much value in subjecting her to chemo at this point.

Where do we go from here? We'll continue to take Myla into Riley for blood tests, and she'll likely have her PIC line removed during one of our upcoming visits. And given that her ANC is up, we'll soon be able to go outside and do things that normal families do for a change. We're looking forward to that, and I'll take a ton of pictures in the process.

As far as the blog, I'm not sure what to do with it. I'll keep it available in hopes that it somehow offers information and insight to families who have yet to walk down the path we've traveled. And if Myla relapses, then I'll likely just pick up here where we left off. In the meantime, I'll be posting our pictures on my Flickr account, which is at http://www.flickr.com/photos/bluefork/. I feel the need to have a bit more privacy with our family pictures now that the chemo treatments are done, so I'll be making these images available only to "family" and "friends." If you have been following this blog, then I'm very likely to consider you a "friend," so feel free to join Flickr--it's free--and add me as contact. I know that many of you who have been following Myla would like to continue seeing pictures of her, so I want to make them available for you. As for the storyline, I'm going to refer you to Melissa's Caring Bridge Site at http://caringbridge.org/visit/gomyla.

It's impossible to summarize the gratitude we feel for the prayers, the meals, the gift cards, the toys for Raul Matthew, the blankets and cuddly animals for Myla, etc.. We appreciate the support you have shown us more than words can express.

So, that's where we are. Oddly, I'm finding this a welcome, but jarring transition to make. In some ways, I feel as if I'm a prisoner who has just been released from the big house. I'm standing outside the prison gate unsure of which direction to walk. In the days and weeks to come, we'll try to find normal again.

Thanks again.

Raul

Thursday, May 1, 2008

Still waiting...again

Today's ANC: 470. The next blood test is scheduled for Monday.

Monday, April 28, 2008

Still Waiting Some More

Things appear to be headed in the right direction, but we'll still be at home for a few more days. Here are the results from today's blood test:

ANC: 403 (up from 350 last Thursday)
Hemoglobin: 9.6 (up from 8.7)
Platelets: 382 (up from 302)
White Blood Cell Count: 1,200 (up from 1,000)

Thursday, April 24, 2008

Still waiting some more...

Today's ANC: Down to 350. Next up: Blood test on Monday, and then on Thursday if needed, and then a bone marrow test if her ANC isn't closer to a thousand by then.

Monday, April 21, 2008

Still Waiting

Myla's ANC was only 438 today--down from the 500 last Friday--so we continue to wait for her ANC to get closer to 1,000 before she is readmitted for her final round of chemo. A nurse will come to our home on Thursday, as she did today, and we'll see what the numbers are then. We're hoping to be admitted on Friday. :)

Friday, April 18, 2008

Turned Away

"Not yet."

That's the official word from Riley regarding Myla's admission. Her ANC wasn't high enough to begin the 5th round of chemo--it was only 500--so we are waiting until Monday to see if it's closer to the 1,000 level.

Wednesday, April 16, 2008

Pictures

Here are a few pictures from the last couple of weeks:

  1. Raul Matthew in his Grandpa Byrom's fireman's outfit
  2. Raul Matthew and my mom with RCA Dome in background
  3. Myla in her bouncy seat
  4. Myla smiling
  5. Myla tilting her head to the side
  6. Myla oblivious that Denise is about to eat her lollipop (okay, it's really an oxygen sensor). :)
  7. Myla "eating" rice cereal
  8. Myla looking over Mommy's shoulder
Thanks to the Jasay's for the great dinner last night and to Denise Page for tonight's meal!