Chemotherapy round two day five

First of all I apologize sincerely that I have been so bad as of late about posting updates.  It seems the last round went way longer than we had orignally thought and then ended right when we thought it never would.

          As I said in my last blog Violet had the IV line put in for her apheresis procedure and at first she tolerated it very well.   But that as I mentioned before they informed me that her line posed a threat of blood clots, and would require several shots a day to prevent them.  V was such a trooper.  They also have to keep the lines clear and working by putting meds into them everyday, after day two with the lines in her leg V got extremely defensive over that leg and didn't want anyone to touch it.  Which made all the maintenance very awful for everyone.  I started to get upset that they placed her line on Friday morning, making it seem urgent that it needed to be placed and then we were left to maintain and fuss over it all weekend.  She was not able to stand up or play because movement cause the IV line to tear an even LARGER hole and cause bleeding which would lead to another dressing change.  To top it all off the lines stopped working.  They were concerned that they had clotted off or that they were suctioned to the artery wall, so they would come in and fiddle with them, causing V to scream and squirm.  I started to get upset and sad for my girl, and I spoke to our attending Doctor who was also confused as to why they had insisted on placing it so early. She informed me that typically the lines are placed in the morning and then the child is immediately taken down to have the apheresis done, and then the line removed all within the same day.  And then came the final blow that pushed me past what a momma bear can tolerate.  Vs counts had been zero, then the next day 1.7, the next day 1.9, her numbers were crawling up sooooo slowly.  And I knew we had to get to a certain number before they would even perform the apheresis.  I was told that they wanted her numbers to be at 5, and that seemed like it may take forever.  Which meant more threat from the lines in her leg, more shots, more having to sit still ALLLL day.  My attending doctor again came to me and put her hand on my arm and said I'm soo sorry they are saying now they want her count to be at least 10 before we can move forward.  I burst into tears for my poor brave girl.  I knew we only had a few days before round two of chemo started and I realized that we may not get to go home before we had to start all over again.  I knew that her counts were taking forever to come up and that 10 was going to take so long, and that the line torture would continue until then.  So, I talked to all the doctors who also agreed we would be here for awhile waiting for those counts to come up, and then again BOOOM, my girl pulled it out of nowhere.  We woke up the next day and the nurse came in and said Violet jumped from a 1.9 to an 11.4 overnight.  We can do apheresis today:)  Yaaayyyy!!!  Then I got anxious AGAIN.  Would the lines clog again, causing us to pull this huge IV and have to have another surgery to put another in??  The nurse checked her lines that had been clogging more and more everyday and they worked BEAUTIFULLY!!!  I was so happy and relieved that I cried.  They took us down to another floor where we met the most amazing sweet team of women who talked a very nervous Mommy thru the apheresis process.  It was very intimidating.  I had to sit with V in my lap for 6 hours while she was hooked up to a machine the size of a loveseat that literally sucked her blood out and then pulled the stem cells and cycled the blood back to her.  I was nervous about how to keep V still for 6 hours, she sat completely still and calm and was SOOOO good the whole time.  She just sat and read with me, snuggled, watched movies, napped.  She was perfect.  The nurses told me that the machine would notify us everytime it was harvesting the cells it needed, and that we were hoping to get a certain number, and that if we didn't we would have to come back and do the whole 6 hours session again the next day.  But as they were telling me the machine kept making Willy Wonka everlasting gobstopper maker noises and they told me she was harvesting LOTS of stem cells, they were blown away.  My beautiful girl was incredible.  She heard them say she had to get her numbers to 10, which seemed impossible to everyone, and overnight she said, you need 10, I'll give you 11.  :)  So, we sailed thru the apheresis process, we were brought back to our room, and they told us as soon as they confirmed that they got what they needed we could pull the huge nasty IV and go home that night.  They called on the phone several hours later, and confirmed that they did indeed get more than what they needed, and that they would be pulling the line out within the next hour.  They took V from me and put her into an exam room and pulled the line and I could hear her screaming,  she was away from me for a good 40 minutes, screaming the whole time and I started to worry.   I sent one of the nurses into check on her and she informed me that when they pulled the HUGE IV she bled quite a bit and because V was panicking so much she was causing it to bleed more, and they were having to keep constant pressure on it which only made her panic more and so it took a little longer.  But they did eventually bring me back a very sweaty girl, who smiled when she saw me and said "Allllllll done"   I made the decision to stay one more night so they could watch the leg for more bleeding.  The next morning V and I got up bright and early and waited on her discharge papers.  Our doctor came and told us they could give us at least a week off to recover physically and emotionally.  I drove V home and she walked in the front door of our house and squealed for a good hour, reuniting with all her toys, running all thru the house, thrilled at her freedom from the IV pole and being able to use her leg again.  It was incredible.  We enjoyed every minute of being home.  I learned how to maintain her chest tube while we are home, and have become quite the nurse.  Charlie and V were able to rough house a bit and go outside.

Vs smile when we finally got home

So, now we are admitted for round two.   I was worried Violet would get upset about being readmitted, but its really been quite the opposite.  She shocked all of us with how she remembered all her favorite nurses.  One of them in particular came almost daily just to play with her even when she wasnt assigned to us and she had shown Violet a picture of her son Junior.  When we were readmitted we were walking the hall and V saw her and said "Hi, where's Junior?"  The nurse and I were both stunned that not only did she remember her very well, but she remembered her sons name.  Also on a daily walk thru the halls we saw our old resident attending doctor and Violet squealed "Tracy, how are you?"  My girl makes everyone laugh and commend her on how smart and observant she is.  She is literally growing up here, and is soo funny.

     Violet has had all the heaviest, yuckiest drugs for chemo infused on days one two and three.  She has been pretty sick to her belly and vomiting the last few days.  She woke up this morning at 5 or 6 AM and vomited for almost 2 hours straight.  My heart ripped in two as I watched my little girl struggle.  She finally passed out exhausted at 8 AM and then woke up around 930, happy and playful, the struggles of the morning a distant memory.  She's had a great afternoon, eating and playing, doing art, and music class, visiting, taking walks, making us all laugh.  She is incredible.  My beautiful strong girl.  She inspires us everyday.  So very proud of her.  Thank you for following our journey and for being patient with me as I needed some time to recoup, I will do better to keep updating.  Lots of love