Hurry Up n' Wait - Day 37

Ellie did not make counts this week after being checked both Tuesday and today, so the start of Consolidation has been delayed until at least next Tuesday.  She has to be above 750K ANC levels (immune system rating) and after being at 945K last Friday, she fell to 545K on Tuesday and 450K today.  It seems there is residual chemo left in her system from Induction.  Several of the chemo drugs have the ability to get into her system and not fully leave for a week to 10 days.  So, after three trips to the clinic this week (2 blood draws + 1 PICC line dressing change), we are backed up another week.  Her Port insertion surgery has also been pushed back a week to the 15th.

On the one hand it is very nice to savor the good times we have had with her feeling so well these past 2-3 weeks and now we get another weekend of that.  On the other hand, we were in a nice groove with the second half of Induction and now she can't fight the battle sitting on the sidelines with us.  I know it is only temporary.  With this being our first delay (which we were told to expect at various times throughout the entire Consolidation phase) it comes with a little nervous energy hoping that these counts going down right now instead of up are not an abnormal sign.  The nurse practitioner reassured us today these things happen and are common.  That being said, our hope is that we can get this going with good labs on Monday and the long initial chemo day on Tuesday.

I've made some peace with the cytogenetics for now.  I put all the things I was researching down on paper, narrowed it to the most direct and specific questions, and emailed our doctor.  As my Uncle (also a doctor) pointed out this week, too much information can be problematic and since the LPCH doc emailed back, I have put the research to rest.  He confirmed my thoughts on the trisomy of Chromosome #21 - it is very common among most ALL patients and since they were found to be NORMALLY arranged in Ellie's cells, her prognosis is still very good.  He has not seen the t(1;9) translocation hardly ever, but a) it is not a part of any of the well known poor translocations to have and b) he believes that the chemo treatments these days are so good, many of these "other" translocations have been overcome and thus are not much to be concerned about.  The docs know this already, but as a parent (ok, and as a science teacher) I had to figure this out myself.  As a side note, if I had a million bucks to donate to cancer research, let me tell you, Cytogenetics is the place I'd put it.  The clues to finding a future cure for ALL are completely embedded in how these genes within the chromosomes rearrange.  They've identified how they rearrange, now I am sure they are focusing on the "why".  The amount of ground covered thus far in scientific research on Leukemia since the 1960's is nothing short of a scientific miracle....and I know it will pave the way for my daughter to grow up with the potential she's had since the day she was born.

My summer break coupled with El's relatively good health this week has allowed us to get out a bit.  We can take her some places so long as no one is directly sick in front of her and she stays outside of enclosed areas with a lot of people.  She and Timmy got two pony rides with "Gigi" (Polly's mom) at the barn this week.  We circled the ring twice and then it was off for a ride in the golf cart (Timmy's favorite part) to look at cows, goats, chickens, and my urging to always be on the lookout for Owls (Makes T&E both start "HOOOO"ing - it's hysterical).  We also have had plenty of time to share the most popular food in the household - yogurt.  You need to know your yogurts.  Ellie, being our resident expert on the subject, has created her own list of terms so that we know exactly which type is to be served before it even gets out of the fridge.  "Baby Yogurt" is of course the Yo Baby Plain that we buy by the box loads at Whole Foods.  "Yogi Time" is when she climbs onto the couch in the morning and mooches off of Dad's Yoplait yogurt.  And "Baby Cow" she has identified as the brown cow yogurt brand settled on after we went to Whole Foods two days in a row and were told they were sold out of "Baby Yogurt" (Not to worry, the lawyer in the family let them have it since we are practically keeping them in business single handedly).  There is also "Other Yogurt" which is the mystery yogurt in a bowl in the back of the fridge - do not try feeding this to Ellie.  Do not.

Polly and I can never say this enough - THANKYOU to everyone who has taken part in the constant food train that comes through our door every afternoon.  If there is one thing we have NOT experienced in this whole ordeal - its hunger.  The food is amazing and we are so grateful for having such wonderful friends.  To not have to worry about that given our pseudo part time residence at LPCH is just so absolutely huge.

We pray that Monday will bring higher counts as everyone is ready to get back to beating cancer senseless.  I hope you will also say a prayer for Natalie and Lilian, a wonderful Mom and her 6 month old daughter who we met our first full night in the hospital in our shared room at LPCH.  She offered Polly support as a parent who knew exactly what we were going through in those awful first couple of days.  She and Polly have kept up correspondence a few times since and I would say it is an honor to stand with her battling this disease for our daughters.  I've always kinda felt like you meet people when you least expect it for a reason.  Now, I know so.