Chemotherapy round two day ten

We are almost completely thru round two at this point.  Only one more small infusion on day fourteen.  Violets counts are zero today, meaning her immune system is non exsistant today.  We just have to wait for her numbers to come back up, and for her to gain some weight, and we will be able to take her home again.  This round she was still pretty sick to her belly and throwing up quite a bit, she has lost some weight.  She hasn't thrown up yet today and has shown a little more interest in food and eaten well.  She has been in good spirits, and worn us out running around and being goofy.  She is still continuing to make me laugh, everyday. 

The other night the night nurse came in around 3 AM to get Violets vital signs and she wasn't quite awake and started to fuss, and I walked over and whispered in her ear, "it's okay baby, they just want to get your tempature", and she opened her little eyes and said in the sweetest voice, "ohhh, okay" and lifted her little arm so they could put the thermometer under her arm.   We all giggled for a good five minutes at how cute she is.  She is a parrot, and thrills all the nurses by addressing them by name and "helping" them to take care of her.  She watchs everything they do, and knows all the routines and does her part to help in all of them.  She's making new friends with other little patients and always has a friend on the floor.  Even on the days that she feels the worst she still takes at least one walk thru the halls a day and is playful and pretty happy.  I am so proud of her. 

We were thrown a bit of a curveball, and this is where I need all of you.  We had a woman come and meet with us the other day and explain to us that she was asked to come by our cancer doctor who is concerned that because Violets cancer is so rare, she may be at risk for a genetic mutation called p53.  Basically, they take a vial of blood from Violet and send it to California where it is tested for this mutation and if it comes back positive it means V has a 98 percent chance of developing a secondary cancer because her body is susceptible to cancer cells.  It is typically genetic. So, they went over Charlie and I's family history.  Charlie has no history of cancer that he knows of, and I only have three in my huge family going back four generations.  So, they said that it would make her chances of having it only 30 to 50 percent.  However, they said the test will take weeks to come back and that if she is positive that she will be screened for leukemia, bone or soft tissue cancer.  I was and am devastated.  I am so nervous and scared.  Also, if Violet is to come back positive Charlie and I will need to be tested for the same gene and if either of us comes back positive we need to be screened immediately for cancer as well.  Charlie has taken the news very well, and is very hopeful that we will get a negative result.  I however, I well, I feel sick with worry.  Please send prayers, positive energy, love, support and whatever else you can to us during this scary time while we wait for test results.  I will keep you all posted as soon as we hear anything.

We did however, the same day receive very good postive news from our neurosurgeon who did Violets brain surgery.  He saw Violet and was THRILLED with how well she is doing, and he told us that because her brain cancer is so rare he presented it to his board of brain tumors.  Basically, they are a group of neurosurgeons from all over the country who do conferences and discuss cases and review them.  He said that he asked all the surgeons how they treat her form of cancer and basically because it is so rare there isn't a standard form of care, it varies all over the nation.  But, when he told them the plan we have in place for Violet everyone agreed that it was pretty standard and should be effective. He said they also agreed across the board that the best prognosis and outcome for these children is if they can at any point have the tumor TOTALLY removed, even if it takes several surgeries.  He told us he is CONFIDENT that he was able to TOTAL remove all of Violets tumor when he operated on her, and with only one surgery,  and he felt like her prognosis is very good.  So, if we can just get a negative test result for the genetic mutation we should be very hopeful and feel very good about Violets prognosis.  This was a huge relief to me. 

So, after Violets counts come back up and we go home we will already be a third of the way thru her treatment plan.  I am so proud of how far we have come, and the things that we have faced and overcome together.  We are forever changed by this experience, but suprisingly in many positive ways.  I walk out of here after every round stronger than I walked in.  More in love with my beautiful strong girl, and so very impressed by her strength and resilence.  I also see life in a whole new way, and have learned to appreciate every little thing, and to not let anything stand in my way.  My favorite time of the day is still when I am typically here alone with Violet and she wakes up first thing in the morning and I go to her and pick her up and kiss her warm head and get a sweet morning cuddle and carry her over to my bed/couch and we open up the window to see her "whole new perfect day", we open the blind together and talk about how beautiful the day is, even when it's rainy and gray and snuggle and hug and smile.  We have met the most amazing people, and made friends I am sure we will have for the rest of our lives.  Our friends and family have stepped in and helped us tremendously and we are so grateful. 

Thank you again to everyone who follows our story, shares our story, cares, prays, supports, thinks of us, worries with us, celebrates with us, we have received so much support thru little gifts and care packages, meals, donations and cards.    I often feel all the love and support we have and wonder how I would make it thru without it.  You are all profoundly important to us, thank you so very much for being a part of our journey.  Lots of love and gratitude.