Waiting - Day 106

Hurry up n' wait.  A very difficult thing to stomach sometimes when all of us are so ready just to "will" this thing into a better situation every single time Ellie gets her blood checked.  I go through my day with various school activities and student interactions where progress in some way, shape, or form is always the end goal.  Extended patience is derived from the learned experiences that progress will ultimately show itself over the long haul in most cases.  Cancer is such a different, unique, and fairly tormenting beast altogether.  Every patient responds slightly different and all we can get are expected trends but not absolute ideas of what tomorrow holds.  So, its tough to come home to just "hurry up n' wait" when progress is slow, not guaranteed, and sometimes puzzling to all involved (doctors included).  It is very unsettling to come home after a long day and not be able to feel that next step.  The LLS message boards have been a good outlet for information to know many others have experienced some of the individual symptoms (like huge 2 yr old irritability) we've had at different times.  At least if we have to wait, we can do it together virtually with others.  That helps a lot.

Ellie's 2am wakeups subsided after Friday and she has turned a small corner in terms of the constant irritation she felt all of last week.  Her smile and eagerness to participate returned over the weekend where she was able to laugh.  If you don't know what the healing power of laughter can do and at what magnitude....then I suggest you meet a toddler with cancer.  It's heavenly, innocent, and more powerful than anything money can buy.  She has had smaller but still significant meltdowns though even through today, including a return of a 2am fit last night.  We're trying hard to decipher what's causing them because very little can be done to console her for about 20 minutes.  It seems this bout was a night terror (which I guess can happen with normal kids this age).  Her energy always seemingly parallels her blood counts and we thought she had been moving in the right direction since the weekend because she was more active.  Today's bloodwork was a bit of a mixed bag.  She did not qualify for IM to start on Friday.  It has now been about a month since her last injection of any chemo drugs that are immunosuppressant which is very worrisome because we learned from the doc the cancer can potentially come back without showing evidence in the bloodwork.  (I feel like screaming sometimes - could we please get  a book, Doc, on all the things that could "potentially" occur?!!!?!)  I know there is now way to completely anticipate everything.  Doesn't mean I have to like it.

I don't want to sound too down here though because the plus side of today was promising despite not getting the green light to get treatment going again.  Her blood work showed normal platelet levels of 300+ and a 70% Monocyte count (Monocytes are the baby building blocks to new healthy white blood cells), so the signs are starting to show, as they have in the past recovery periods, that her body is starting to regenerate.  This eases any thought of the cancer returning because the signs of regeneration are always positive in nature even if it took a longer period of time to do so.  We will go back on Friday for more blood work to hopefully see that immune system rating climb above the magic 0.75 mark (she currently is still at 0.1).  If we qualify, her IM first hospitalization will begin on Monday.

I also need to mention that the doctor in the clinic today happened to be one of the most senior docs the Bass center has at LPCH and he allowed me to call him directly this afternoon to ask more questions since I was at school when Polly took Ellie in for labs.  To get that sort of instant connection for the purpose of discussing a parent's concerns is invaluable.  I am very thankful for that.  Doctors cannot control a patient's recovery time from chemo but they can put up a wall of support through calming reassurance and help us persevere through a difficult waiting period.  On Friday we'll know more and for now, nothing really else matters....so why not just make the best of Thursday (tomorrow) instead of worrying.  Funny, I have to type that for it really to have to settle into my thoughts as the right course of action tomorrow.  I think that is one of the biggest reasons why this blog has been useful.

We are all moving in some sort of direction.  I'd like to think we do it because we hope to make tomorrow more fruitful for our families and leave a mark with those projects we care so much about.  It's not the burden of work so much as it is the idea of moving forward with sometimes painful sacrifices now.  I believe that whole heartedly.  Often the drag of "waiting-to-get-there" masks the truth of what we're really supposed to see.....and that is everything we encounter along the way before the final destination is reached (or even in sight for that matter).  There is a bigger picture, of course.  But right now, she sleeps soundly in her bed and is likely to get to go to the Pumpkin Patch tomorrow with her mom and brother.  Thanks to the doctor today and of course the unending support and love Polly gives to me, that's enough to step down a bit, wait patiently for Friday to come, and ENJOY every second of laughter in whatever spurts I am lucky to see it in tomorrow.