Chemo round 1, day 16

Groin catheter

Day sixteen........ugh.   It's been a rough couple of days.  Violet got her last dose of chemo for this round on Thursday.  The original plan as I had shared earlier was that we would be getting apheresis, which means basically harvesting stem cells from V to be frozen and used at a later date to help her recover.  The first step in apheresis is to have a line put in which means a very large IV.  They put a very large IV into the groin artery and then the next day they harvest the stem cells.  The actual apheresis process requires having V sit for 6 to 8 hours while a large machine is hooked up to her lines in her groin, the blood is pulled out one line and then sent thru the machine which collects the stem cells and then the remaining blood minus the stem cells is cycled back into her other line in her groin.  So, we were orignally slated to have the line put in Wednesday and to have the apheresis on Thursday.  After they are sure they have gathered enough stem cells the line is removed from her groin and we go home for a week before we come back to start round two of chemo. 

I have learned many lessons thru the process, the first one being.....I know this may come as a bit of a shock but....I'm a control freak.  I wake up at 7 am on Saturday morning.  Take stock of my kitchen and make a list of all the items I need based on where they are in the store, and then I put a star beside the items I have coupons for.  I love having a plan.  Having a child with cancer is a TOTAL loss of control.  You have no control over any part of it, so that's the first lesson for Mommy, let go of any sense of control.  Secondly, good luck making any plan.  Because everything here is fluid, things change at the drop of a hat.  So Wednesday came they drew blood from V, which is a daily occurance thru the port in her chest.  In order to put a line in her for apheresis  her blood counts have to be at a certain point.  Well, her blood counts were very low as a result of her chemo so she wasn't ready.  Her blood counts stayed at zero for three days, which is scary because she has no immune system to fight sickness and infection.  Which is also scary because she has a huge tube coming out of her heart.  And because Violet is very active and covered in bruises because of lack of platelets.  Three days of zero count, a little girl who doesn't feel well, and frustration over not getting to go home.  I kept setting myself up every night thinking in the morning she will have a higher blood count.  We would wake up and see, no still a zero.  :(  The days are grey and walking the same halls starts to affect you.  You forget what your bed feels like.  On the roughest day when mommy was feeling exceptionally defeated, I held V in my lap and was snuggling her and her hair was just falling out.  I sat and just lightly rubbed her hair until it was all gone.  She seemed relived but it hurt my heart so bad and as soon as she fell asleep I just sat and silently cried.  Then I decided it was time to move on and swept it up and kissed her newly bald head.   Then that night  I was walking the hall to go to the family lounge and I passed a family coming in with a child on a hospital bed who was clearly VERY ill, and I stopped in my tracks.  The visual shook me, then I realized they were wheeling the very ill girl right down to the room right beside ours.  Right behind the very sick child came about 50 very sad looking people who somberly walked into the room beside ours.  I came back and told Charlie I was shaken at what I had just seen and told him I was concerned.  This is when several people came out of the room beside ours stood in our doorway and started to hug and sob.  I put two and two together and realized the large room beside ours is a hospice room.  I laid on my uncomfortable hospital bed that night knowing that 5 feet from my head a life was being lost, parents were saying goodbye for the last time and I was knocked to a new low.  This place is full of hope and I am so grateful that our doctors are so incredible and optimistic and have such a great plan.  But, when you walk and see every room has a child, every room has a story it does affect you, even if you don't have a child here.  I feel self centered that prior to our diagnosis I had such little awareness that this is going on, everyday. 

I apologize that todays blog is so depressing but the truth is this is an awful rollercoaster ride, and there are very dark moments among the smiles and playing.  So back to V, she had a zero count for three days, which is scary, despite her low counts V wakes up everyday and smiles and plays, she has been incredible, and I can say in full confidence that often it is harder on me as her Mommy than it is on her.  She is just a typical 17 month old, she just wants to play and explore and she has no awareness or concern about being sick.  Which is a blessing.

So day after day of low counts, I surrender entirely and realize we won't be home for the weekend and I have no expectations about her counts coming up.....BOOOM the nurse wakes me up day four or zero counts and says her counts are now at 500 they want to proceed  with putting her lines in this morning.  I have a yeah moment, and then get a dose of fear as I realize this is yet another procedure where she will be sedated which is always a little scary.  So, the nurse says, "yup, she looks great except we need to give her this med before surgery to prevent bleeding." So they bring it in and two minutes in V wakes up out of a dead sleep and starts a scary choke/cough.  I immediately say to the nurse "stop, something is happening. We need to stop."  So she stops the med and says that V is having a probable allergic reaction, they will give her Benadryl.  Which they do and V falls back into a deep sleep.  I almost start to breathe again as a very worried Mommy, it is terrifyig to see nurses RUNNING down the hall to your room, hearing alarms going off and your child gasping for breath.  So they get the alleric reaction under control and the nurse looks at me and says, "we are gonna push forward, they are coming to get her in an hour for surgery we have to push the meds again."  I'm holding my breath again, and Im sweating.  She successfully gets the meds pushed and they take V down to put in the line for apheresis. 

The procedure went smoothly, they bring us back to see her in recovery and there's my brave girl, sleeping soundly.  They let me hold her, she woke up and looked down at her tiny leg now with a big invasive contraption coming out of it, she reachs down and playful taps the tubes together and says "go", she is unaffected and ready to go back to her room:)  We brought her back upstairs where the doctors told us the line is probably very uncomfortable and painful and that she will be quiet the rest of the day and pained and that she won't want to bear any weight on it.  As they are telling us V stands up in her bed and starts to jump and laugh:)  That's my girl.   

She was so playful and happy yesterday in fact that we had a hard time wrestling her.  She bled more than usual because she was all over the place, which means today they will have to change her dressing.  Which she HATES.    Anyway, last night they say we want you to have some time to relax we want you to have a nice quiet weekend she won't get shots this weekend.  Put her to bed, go to bed early yourself.  I do as they say and within an hour a doctor comes in....."Yes, Ms. Murphy, your daughter has an increased risk of blood clots because of the line in her leg because she is so small and the line is so large so we need to give her two shots  day to prevent blood clots."  So, now we went from enjoy your shot free weekend to two shots a day and something new to have a sleepless night over.  They give the shot she cries and falls asleep, I put her to bed and literally crawl to my sofa utterly exhausted, and several hours later the nurse wakes me, "I took her blood samples but they got sent to the wrong department, I need to redraw them."  This of course wakes up V, get her back to bed, several minutes later "Violets potassium levels have just completely dived to a dangerous level.  We need to infuse potassium immediately and get her on a heart monitor as this can cause severere heartbeat irregularities."  Aaaaaaand I feel sick, are you kidding??  So, I jump up and call my mom in tears exhausted and scared, and the nurse comes back in and says, "I'll redraw the blood again so we can double check", they recheck and things come back several points higher.  Disaster averted. What just happened?  Lab error, a quirk, a flux in potassium, no one knows.  We give her some potassium in her IV and I fall asleep sitting in the rocking chair holding her.  Now, you are caught up. This is our life the last few days, rolling with punchs, fears presented we didn't know could even be a fear, V is unaffected and strong, mom is near breakdown.  That pretty much sums it up.  Discharge dates come and go, we are assured that at some point we will get to go home.  Everyday has its challenges that we sometimes eek over but we always clear, and today is no different.  Today we have to change a very bloody dressing on her new leg line, which will cause V to flip out.  But, we will get thru it.  We are shooting for apheresis on Monday, but we will see, let go of control Mommy, there is no control.  We will get home eventually....and V continues to smile and play. Lots of love.