5/15/12 - 3 questions answered...

The fundraiser is still going on!!  We really would like to reach our goal to ensure that all of our financial obligations are well taken care of.  Please promote through Facebook, Twitter, and through email to get the word out!!!  Thanks! 
http://www.youcaring.com/fundraiser_details?fundraiser_id=1892&url=hopeforhaylee


Ahhh!  I hate being late to clinic.  We were stuck in traffic for what seemed like forever, but made it...and was only 15 minutes late.  Since we were stop and go, I was able to put the EMLA cream on her so it wasn't on for a long time just in case her port had to be accessed. 
We were in triage 10 minutes later and had to get the dreaded finger prick....not a favorite with Haylee.  I try so hard to give her choices and do my best to make it a smooth thing for her but she doesn't let me or herself.  Lindsay and I tried the technique the nurses and Nonna used last week and she did it but not after a bit of a fight.  Finally, after about 10 more minutes, she got it done with a minimal amount of tears.  I wish it was something she could get over but it may not be something she ever gets used to.  Everyone has something I guess. 
As soon as we hit the clinic room, she was out the door with Lindsay finishing up her powerpoint presentation that she made for her class.  Her and Lindsay were able to get it finished for the most part.  Lindsay has a few more things to add to it.  She's going to email it to me and I'm going to try and find a way to get it onto the blog.  It's really cute because she took the pictures and it's all in her own words.  Haylee was really excited about it :)
Dr. Abdella came in looking for Haylee a few minutes later.  She was waiting for all the counts to come in but wanted to go ahead and check her out so we could get out of there quickly.  I had 3 questions for her so I got those out of the way while we waited for Haylee and Lindsay to return:

Q - 1.  Since I promised Haylee we would take her to the beach after all her scheduled admissions were over, when would we be safe to take her more than 2 hours away from the hospital (on a vacation to the beach)?
 A - Since she will be scheduled for inpatient either May 29 or June 5 (depending on counts), given that everything goes according to planned during the last admission, and counts recover like they did last time, she should be good to go on vacation the last week of July into August.  Once she's released from the hospital (end of June or first few days in July) she will be scheduled for a clinic visit about a week afterwards to check counts and then have a week or 2 for counts to completely recover.  Good news!!!  I'm hoping we can make it to a beach!

Q - 2.  How is it determined that she is 'cured'?  (Basically, when does the countdown begin and for how many years?)
A -  Haylee has the rest of this consolidation, Consolidation 4 (4 weeks, give or take), and then nine 84-day cycles for Maintenance.  Adding all that up, her remaining therapy is the next 2 years and 2 months (give or take a few weeks).  The countdown to being officially cured begins at the end of all therapy (she will be 11).  She will have to continue to show no signs of relapse or leukemia cells in her bone marrow for 5 years to be considered officially cured - she will be 16.  We've got a long road ahead.  With that being said, we go to the next question...

Q - 3.  What were the results of the BMA taken 2 weeks ago?
A - The BMA done 2 weeks ago was being checked for a specific gene - the PML/RARα fusion gene - which is what doctors look for in the diagnosis of APML.  They use a method called PCR - Polymerase Chain Reaction - to check for the gene.  Back in December, Haylee went into cellular remission meaning that no leukemia cells were present in her bone marrow on the cellular level.  Up until this point, her BMAs haven't been tested for the specific gene mentioned above...until now.  Checking for that specific gene is done on the molecular level, which is pretty much as far in depth as you can get without using the words 'complete remission' or 'cured'.  Dr. Abdella went to find out if the PCR done on her BMA found anything and the answer is....NO!!!  Haylee is now considered to be in molecular remission!!!  Those were the sweetest words I've ever heard :)  They will continue to check for the fusion gene with every BMA done during the remaining therapy and every year after that.  As long as the fusion gene doesn't come back, ever, she will be considered cured after the above said time (see answer to question 2). 

I know all this is a lot to process!!  I explained it more in depth than what we discussed today to help you understand how some of this stuff works.  I hope you are able to understand it to some degree :) 

Haylee's counts look GREAT!  She can finish the school year out at school, where she should be.  She's also going to take the reading portion of the CRCT on Thursday even though the AP of her school said they would promote her to the 4th grade regardless if she takes it or not.
Her next clinic appointment is next Tuesday to check counts again.  Hopefully her counts stay up, especially her hemoglobin and platelet counts so she doesn't have to be accessed (she's only accessed for chemo and to receive blood products, if needed).  Dr. Abdella was impressed how well she's handled this round of chemo since the Idarubicin can tend to make kids feel yucky.  She's not been feeling yucky so far!! 

Have a great rest of the week!  I'll update in a few days :)