Violets first round of chemo day eight



Violet and her friend Abby



Violet, C and Abby with her
Monkey hat

Violet has had another busy day.  She just got back from a playdate in the toyroom with another little girl, who is also a cancer patient.  Violet has quite the life up here.  All the nurses love her, and really enjoy her, they come and visit her even when she isn't their patient. 



The view from our room

She wakes up in the morning and it is fun to see who our nurse is for the day.  Then we snuggle and open the blinds to see her brand new day.  The view from our 12th floor room is stunning and makes Columbus look so beautiful.  Then we order her some breakfast that is delivered on a tray to her and she loves to pull the top off the plate to see what she has.  Her appetite the last few days has been a little rough but seems to be a little better today. 

The oncology playroom

Then she has a flurry of visitors from the hospital staff.  She has a recreational therapist, which basically just means a person with lots of fun toys who comes to play with her. She also has a massage therapist, who she adores, and tackles everytime she arrives.  They listen to music together and she gets massaged to help her to learn and remember that in the hospital not all touchs result in "ouchies".  The doctors make their rounds and V and I go and stand in the hall, and listen.  Then she also has a music therapist who comes to the room and plays music and they sing and play instruments.  They also do group music therapy, so she can socialize with the other kids on this floor.  We take lots of wagon rides, and lots of Violet parades.  They also have a fully stocked toyroom where she goes and runs around like a maniac.  Charlie and I joke that she is almost happier here than she is at home as there is always something to do and people to play with.  

This is what the broviac looks like. 

So, her chemo.......she has what they call chemo rounds.  Which just basically means a full chemo treatment.  Her rounds are 21 days apart.  Day one she gets three chemo drugs.  Days two and three she gets two other chemo drugs. They just wheel in her IV pole and the chemo just looks like another IV bag. They do these in the evening.  Some of them take only a few minutes to "infuse" while the longest is four hours.  So far she has just slept thru the chemo as it is painless.  She starts to feel the affects almost exactly 24 hours later.  She was pretty sick to her stomach two nights in a row which was hard on all of us. She vomits and gets so panicked as she doesn't understand what is happening.  It is difficult with her age because we can tell she is uncomfortable or feeling bad but she can't tell us specifically what hurts and how bad.  But, what I will say is that the nurses are very good at keeping any pain completely under control as well as nausea.  Then she has 4 days to rest and then they do another small dose of chemo that comes in a syringe and just looks like a shot, but it goes into her port on her chest, she gets that again on day 14 and she gets a week to rest before the whole process starts again.  Because this is her first round we are hospitalized longer because she had to have the  surgery to put the port into her chest, and because they are keeping her for observation to see how she handles everything but also because after you receive chemo your white blood cells drop.   The chemo works by attacking any rapidly developing cells, the chemo can't tell the difference between good and bad cells so this means that good cells are also damaged. 

So several days after the chemo treatments we are expecting her white blood cells, the good cells, to drop to zero.  Meaning our V will have little to no immune system and she will almost definately spike a fever.  We just have to watch to make sure that the fever is not an indication of a serious infection and then her white cells will start to come back up.  She is given a shot every evening that looks almost like a insulin shot.  It boosts the white blood cell count.  Which can also result in bone pain.  She has been a real trooper so far.  The nurses give the shot in her leg when she has already fallen asleep and she just wakes up and grumps a little and falls right back to sleep. 

One of the other reasons we will be kept longer this time is that when her white blood cells come back up we will be doing another procedure here in the hospital to harvest those white blood cells to boost her later.  After our first three rounds of chemo she will be given high dose chemo and also the white blood cells that we harvest to boost her back up.  I will explain that better later as that comes closer.   What I can say is that we are very well looked after and that V is not up here just laying in a bed miserable.  Not even close.  She is doing as well as they can ask and often even better than they would imagine.  We are hearing very hopeful things and we are getting thru day by day.  More often than not she is playful and happy, and making all of us laugh.  



Our girl sleeping peacefully

I just want to take a minute to say how touched I am by all the love and support we have been shown.  Our family has been amazing, and supportive.  I am blown away by how many people are following our story and take the time to read my blogs.  If you have any specific questions please feel free to comment and I will address them as best I can.  I lay in bed at night, afraid, overwhelmed and missing my old life.  But, then I look over at my strong girl sleeping soundly in her bed, leading the charge and think about all of you out there cheering us on, and supporting us.  I am humbled to know we have lots of love from so many, friends, family and also people we haven't met.  We have prayers and well wishers in Dubai, and Turkey and all over the nation.  We FEEL the love and support more than you know, it is beyond helpful and comforting.  Sincerest thanks from the bottom of my heart.  Also, thank you SOOOO much to everyone that has donated to our family thru the blog.  This has been such a nightmare diagnosis which was only made more scary by the fact that we are down to one income and bills are coming in.   The financial burden is so hard for Charlie as he is needed here and also at work.  We are a young family and were not at all prepared for this financial blow.  So TREMENDOUS thanks for all the donations.  It helps us to have one less thing to stress about.  Lots of love, I will post again soon.