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

10 comments:

Lesa said...

What? Your chrystal must be in the shop!
I completely understand about trying to figure out where to go from here. My Drew has outlived his predicted life expectancy so everyday is a surprise....I hate not being able to know what to expect!!
Anyway, it's great news for Myla....she can try and see what it's like to be a "normal" baby. Enjoy every minute of...I know you will :)

Cherdecor said...

Best wishes to Myla and we hope and pray that she will do well and be a continue to be a miracle!

Jennifer said...

What a joy it will be to all be at home together and able to just simply enjoy each other!
Be blessed!

Leonidas said...

Here is my suggestion: Look left, look right, run across the street before they change their minds and pull you back in the gates. Once across, take a deep breath, let the sun shine on your face, feel the warmth, smile at the family, hug and kiss eachother, and thank God for being there every step of the way.

Livy is so excited for you all. We will continue to keep you in our prayers and thoughts.

PS: Don't forget to check in with your parole officer, they can get nasty if you don't!

Jessica and Olivia

Carey said...

Oh wow, I can completely feel where your words are coming from. That freedom is sitting at our doorstep and we can't wait to join you. Playdates without masks, Walmart without sani-wipes ... it's a world we've forgotten even exists. I know you will cherish each day with Myla, so I won't tell you that. But please, give her a big hug and kiss from her friends in KS routing her on. We will continue to keep your family in our thoughts and prayers. Good luck!

P.S., I'm a little sad though as I enjoy following the blog and reading up on Myla. You're an interesting author, and I would be a fond reader should you decide to continue blogging!

The Patients Voice said...

HL 293 Myelodysplastic Syndrome (MDS) or Acute Myeloid Leukaemia (AML)- a new research blog – please help

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cheeriooos said...

What a beatiful little girl!! I hope for the best for you all! I'm not sure if you are already a member, if not, I thought this is something you may be interested in.

We would like you to visit and consider joining the People Against Childhood Cancer community. We are a network of over 900 parents, friends, family, concerned citizens and childhood cancer organizations (CureSearch, Alex's Lemonade Stand and more) whose sole mission is to present a unified voice to raise awareness of childhood cancer. The website format is unique, you can have friends, post photos and videos, blog, participate in Forum discussions, start or join Groups that interest you, chat live with other members, and promote or learn about fundraisers. It's free, interactive and will continue to evolve.

While these features are nice, our focus is action to raise awareness of childhood cancer. One initiative is the Petition to Raise Awareness of Childhood Cancer . It has over 16,000 signatures and will be used to hopefully leverage a network TV special solely on childhood cancer or a similar high profile project. Other ideas and action items are presented daily in our ongoing effort to raise awareness.

Please visit and join us at http://curechildhoodcancer.ning.com.

AJay Piniewski said...

you need to check us out please,
http://curechildhoodcancer.ning.com/

Randi said...

Thinking of you and here for you!

Cleo Fitzgerald said...

I was diagnosed with only a 26% chance of survival ... I have now been 6 months cancer free... miracles happen every day - and they have ... all the best for your precious little girl becoming stronger every day now.... (p.s you are going to LOVE the teribble twos!!! ;o)