Chemotherapy round three day thirteen

First and foremost, I'm sorry.  I'm sorry I haven't posted any updates to the blog in so long.  I feel very guilty that we have so many people who are interested in what's going on with our sweet girl and check the site frequently and who I am sure are disappointed by not having any recent information.  So, I am very sorry.  I have made it a goal to update the blog several times a week moving forward.  I am so grateful that we have so much support and interest, and I apologize for not showing that gratitude by posting more often.

V is doing well, we are drawing near the end of the third round of chemo.  Violet is currently standing in front me dancing, eating French fries.  She is amazing.  This round has been, dare I say the smoothest so far.  This rounds chemo drugs were the same as the previous two rounds.  But the doctors and nurses told us that each round she would probably respond differently.  She seemed to manage very well.  She still had some nausea and vomiting in the first week, but not as severe as before.  She also managed to eat all thru out this round which she hadn't done previously.  As a result she has maintained a good weight.  She has stayed happy, and funny through out.  She is currently waiting for what they call count recovery before she can go home.  As I had explained before she gets the chemo and after the nausea and vomiting they check her blood counts daily and approximately a week to ten days after the chemo is administered she loses all her white blood cells, which means she has no ability to fight infection or illness of any kind.  This is where my being a germaphobe has come in handy.  I wash her hands religiously and I am very careful about all her exposure.  I am afraid I have probably hurt some feelings unintentionally as I ask for no visitors while she has no immune system,.  I just have to protect our little princess.  MOST children in this phase of zero white blood cells develop a severe fever, around 105 and they are put on antibiotics, some of them even end up in the ICU.  We have so far managed to avoid all of that.  I am very grateful.

Oh, also....big news.  We got her genetic testing back and our beautiful girl came back NEGATIVE.  Which was a huge relief, and a game changer.  Her doctors said they feel pretty confident about her having a positive prognosis as a result.  Which made me cry with relief for days.  Unfortunately a lot of little ones with Vs type of cancer test positive for this mutation and end up having to face a second form of cancer in addition.

So, at this point we are days away from being thru this third round, making us officially half way thru her chemotherapy plan.  She has three more rounds remaining.  The first free rounds that we have already done are what they call standard chemo, and they were no picnic.  But the last three upcoming rounds are what the doctors refer to as high dose chemo.  She will be in another wing of this floor where there is less traffic and we wont be able to open our door or leave the room much, because she will be even more fragile and we have to be even more careful and isolated.  She will be receiving two new chemo drugs we haven't had yet.  One of them requires her to get a bath every six hours as it seeps thru the pores and can cause chemical burns on the skin.  The second is another one that will probably cause tummy issues.  These drugs also carry the potential of causing mouth sores which we haven't seen yet.  But, we have heard that they are pretty awful.  I am very anxious about the next rounds.  So she will receive the two new to us drugs over two days with baths every six hours, for the first few days and then on day four she will receive her stem cells back that they harvested way back in round one.  That was the process where they put the giant port in her leg and harvested her blood and collected stem cells,  well those stem cells are currently frozen at OSU waiting for the next three rounds when our sweet girl will desperately need them to as the doctors say rescue her, as her recovery will be very rough and her immune system and blood counts will plummet.  I am very unsure what to expect, but I am scared.  The last three rounds have not been easy, and I am very intimidated to hear that the next three will potentially be worse.  The good news is with our negative test result on the genetic test, once Violet is done with the next three rounds of chemo we will get to ring the last chemo bell symbolizing being cancer free and done with treatment.  We will just be coming back every three months to have brain and spinal scans to watch for a relapse.  Once we get thru the first year, the scans will become less frequent.

I have to be honest part of the reason that I haven't been writing is that I have definitely been really struggling emotionally.  I know it sounds bizarre but I feel like I am just now starting to really process and deal with all this.  The first three months I was literally a zombie and was just making the motions, I told mom the other day, I don't even remember the first few days after her diagnosis.  Now, the reality is starting to set in for me.  Realizing this is our new life.  Violet is growing up in a hospital, she is learning to walk in hospital halls, she is learning to talk.  Some of her first words were
"owie" and "please no" she knows all about heparin and tubies and owies and doctors.  It hurts my heart.  I find I am grieving for the normal childhood she deserves.  I am doing my best with the help of the amazing staff here to find any fun where we can but I am so heartsick over holding her down while she cries and we have to do painful procedures.  I desperately wish I could help her to understand why we are doing all of this.  Despite how hard it has all been, and despite all the many owies my brave girl has taken she always recovers and laughs and plays, and hugs and forgives, and sings.  It has been so hard for me to be so isolated up here.  I worry about Violet as well sometimes, until I see her befriending her nurses and fellow patients.  She truly has helped mommy thru this.  I am so grateful to be her Mommy, to get to spend this time with her, everyday, watching her develop and grow.  She is a marvel.

I came into this round very down, I cried all the way back up to the hospital.  I wasn't sure how to put one foot back in front of the other to do this again.  It was so much easier to be locked up here thru the long winter, now waking up to beautiful days, watching kids in the park below us playing hurts me.  I suppose it will just make us play harder on the days we are out.  It makes the sun feel warmer and the air a little sweeter when you haven't seen it or felt it in so long.  So, if you have the chance go out, put your face up to the sky for me and V and feel the sun and marvel in it for just a minute.  Hug your babies tight and never be the first to let go when they hug.

I am only able to get thru this by concentrating on all that we still have.  And its so much.  I am so grateful for all of the support from everyone.  All the cards, prayers, thoughts, hugs, food, texts, calls.  It helps soooo much.  I will be updating again tomorrow with a better idea of when this round will be done and I can take my girl out in the spring air again.  Until then, thank you for reading, and for caring, and please accept my apologies for not updating more.  Lots of love, and goodnight.