Rough Week - Day 101

After I posted on Tuesday, things started to go down hill this week.  Ellie woke up at about 2am Wednesday morning very upset and in pain.  After about 3 hours of trying to calm her down, the three of us got about 90 min of sleep before it was time to get the day going again.  She has had bouts of persistent irritability before, but we were surprised when it went beyond just a small portion of one day.  Throughout the day she'll try eating or playing with something small and in the process of the activity, she'll get frustrated when something gets dropped, doesn't fit together, or just doesn't go the way she wants it to and start crying.  We sprint back and forth in the house trying to get her the things she thinks she wants but to no avail and we simply have to wait it out.  She wimpered for most of Wednesday and Thursday.  As a result, Polly and I are crawling into the weekend.

The culprit here seems to be the drug Vincristine which is given at Week 7 and Week 8 at the end of Consolidation.  We've had it before in weeks 3 and 4 and also during Induction (initial month of treatment) but the effects rarely lingered more than a day.  Thus, another harsh lesson has been learned - the effects of chemotherapy are cumulative and her body is taking longer to recover because the amount of drugs she has received has increased dramatically over the last 8 weeks.  I had figured since the PEG shots in Week 7 and Vincristine a week ago were non-immunosuppressant, her counts would rise nicely this week.  I need to stop making predictions.  She went to LPCH on Wednesday for her blood work that would hopefully qualify her to start Interim Maintenance today and it wasn't even close.  Her White Blood Cell count is down to 0.2 (lowest it has ever been), she needed a platelet transfusion because she was below the minimum of 20 on that front and could not even calculate an ANC value due to so few White Blood Cells (we report this as <0.1 neutrophyl count).  Just so you know, her platelets need to be 75 and her ANC needs to be at 0.750 for IM to begin.  Once we knew those numbers, her fatigue is justified.

When I was younger, I remember having to take iodine supplements for some random flu bug I had.  It was given in liquid form and had to be diluted in orange juice to be edible.  It was the worst tasting thing I think Ive ever had....and as a result I remember it to this day.  I never understood why enduring that was necessary.  I think El is wondering the same thing about Vincristine.  Besides hair loss and nausea, this drug causes Neuropathy (nerves from her brain/spine that are causing pain in her legs, arms, and joints).  Her arms shake sometimes as a result and any sudden movement with her feet causes pain.  I want to stay upbeat because it is who I am most of the time, but her crying from this whole ordeal drains like nothing else ever has.  I'm getting upset just typing about all this.  WHY WHY WHY?????

When her misery hit the 48+ hr mark yesterday, we finally asked if we could come in and see our oncologist. Best thing we could have done.  Really.  Polly had to wait a while to see him but he provided some reassurance that was simple yet very needed at that point.  More than the average number of kids on the same protocol experience delays in chemo heading into IM and low LOW blood counts right after Consolidation.  We managed to sleep from 10pm til about 5am last night with no 2am wakeup like that last two nights.  It was better but I'm still running close to empty this evening and will be finding my pillow as soon as I can shut this computer off.  We have found one calming item that has worked to subdue her for about 30 minutes at a time this whole week - Campbell's chicken soup.  It is the new Stoneybrook Yo Baby Yogurt for us if you will (at least for now).  Polly bought a case this afternoon.  I came home from a very long week at school this afternoon to a slightly happier daughter.  She managed about 2 hours of smiles before she melted again around 5:30.  The doc said the Vincristine effects could last as long as a couple of weeks (God, I hope not).

We go in next Wednesday for another try at qualifying blood work for IM to start the following Friday (Oct 14th).  If that occurs, she'll go into the hospital for a couple of days for the high does methotrexate and a lumbar puncture of intrathecal methotrextate into her spine.  So, we wait for that magical turnaround in blood counts.  It occured just after Induction and happened almost exponentially in about 2 days.  Here, it needs to happen in the next 10-14 days or else the worrying will go up on all sides around here.  We're doing our best to stay patient.  Timmy's ever expanding vocabulary provides some comic relief.  He now responds to every answer we give to his questions, "Whhhhhyyyy?".  What's even better is that I can give him a reason back that has nothing to do with anything and he accepts it contently with an "Oh".

Timmy:  Daddy, Timmy play with (neighbor) outsiiiide?

Daddy:  No, buddy, its time for dinner soon and besides its been raining so its too cold right now.

Timmy:  Whhhhyyyyy?

Daddy:  Well, because the Monkeys in the living room are playing Monopoly

Timmy:  Oh

Ok, I don't give him answers like that all the time, but on occasion we try to keep our sanity anyway we can  :)

I guess we consider ourselves quite lucky to have had the September that we did which went by almost trouble free.  Ever since her last hospital stay ended on Sept 1st, she had been skating through treatment.  I feel like just when we get a handle on things, the reality hook decides to come out and dammit if it just doesn't ever seem to play fair.  Polly can barely work now because of the multiple days at LPCH and Ellie's needs increasing during IM with hospital stays involved.  She has worked so hard at her own business and I wish I could make this better for her.  We maintain the day by day outlook and try not to focus on anything other than this next week.  Whatever time we can spend in other arenas outside of the twins - great.  What time we can't spend....I try not to worry about very much (is it really worth it to worry at all?!).

I'm going to go back to "Rudy" again if you don't mind.  When he is seeking admission in his last window of opportunity to Notre Dame (prior to the start of his junior year), he sits alone in church pew praying the night before admission letters come out.  Father Cavanaugh comes walking through and sits in the row right in front of him for a minute.  He sees Rudy looking for answers and offers a harsh reality, "Son, in 35 years of religious study I have come up with only two hard incontrovertible facts:  There is a God and I am not him".  He makes mention though before he leaves of something I have thought about this week, "Rudy, the prayers we say are something we do in our time....but the answers come in God's time."  With no rational explanation for week's like this, I am trying my best to find patience in that exact sentiment.

Please pray that Ellie's smile returns this weekend and that we get back to her treatments next Friday.  I want so badly to tell her all about the Monkey Monopoly games too.