Friday, July 29, 2016

Worst Sleepover Ever

Here is a picture of Abigail before our big night last night.  Big night of watching the DNC with her mom in the family room at Children's Hospital in Madison.  Totally appropriate.  Just like her Netflix and Chill shirt, and those cosmic leggings with cat and dog heads.  You can't tell, but behind that mask she is smiling and we did in fact have a lot of giggles.  #DemsInPhilly

Day 4

We know it is B-Cell ALL but we do not know the sub type and will not know until the cytogenic testing is back in a few weeks.  However, because of Abigail's age she is already considered 'very high risk' and is already receiving the most aggressive treatment plan.  Once she finishes the induction period (in about 4 weeks) and has another bone marrow test we will know what her MRD (minimal residual disease) is and what her responder status is.  Until then, all we can go by is her daily lab work, which at this points, according to her doctors looks promising.  

WBC 0.9
Hgb 9.6
Hct 27
Platelet 13
ANC 140

Her electrolytes are normal and her kidney function is great still, and her uric acid level is very low, so now she can stop the allopurinol (a drug used to protect against tumor lysis syndrome).

She is off all IV medications and is taking everything by mouth.  Her pelvis and leg pain are better (resolved even), her thoracic pain is better, and the headache is gone (so far).  She has some jaw pain which we are not sure if it is due to her wisdom teeth coming in, which we just found out about a week prior to her diagnosis (great timing), or if it is already a side effect of the chemo.  Ice packs have helped.  She has an increased appetite and has been taking in enough to drink.  So she may even get to have her IV fluids discontinued soon.  She is now able to leave the unit and go for walks even outside as long as she wears the right protective mask.

Right now, as I type, I'm sitting next to her while she gets her first dose of Pegaspargase (Peg we call it).  It has a high rate of anaphylactic reactions, so her nurse is actually sitting at bedside quite literally monitoring her.  I have to say that the nurses on staff at this hospital, in this unit, are some of the most dedicated, caring, loving, smartest nurses I have ever encountered.  I have an incredible new respect for this extraordinary profession I am so proud to say that I am a part of.  

Abigail got up and walked to the family room and watched the historic acceptance speech by Hillary last night.  We all sat up with blankets and pillows, and watched the DNC.  It is now confirmed, this is the worst sleepover ever (for a 15 year old). 

How Abigail is doing:
Someday soon, I hope she will write on this blog and tell you herself.  Until then I am respectfully trying to articulate how I think she is feeling.  She is anxious and her PRN lorazepam is working well.  She is sad.  She is frustrated that she gets tired so easy and says things to me like "I am trying so hard."  She would benefit from some praise and encouragement.  If you wonder what you can say to her, tell her how strong she is and how proud you are of her.  Because she is strong, and we are very proud of her.

How is Mom/Dad doing:
I am less tired and less scared.  Chris is DYING to get back up here.  I've given him the important task of getting cup of noodle and a bottle of hot sauce.  Our girl has some strange and random tastes.  He will come this afternoon or evening and bring the Littles up here.  I am gong to play board games and card games with them when they arrive.  

Later today I will post some pictures for those of you who are not on Instagram.