Help Violet's Family

Tuesday, June 4, 2013

Home after round 4 :)

We were released from the hospital yesterday after round four of Violets chemotherapy.  I have to say I was TERRIFIED of this high dose chemo, but, it went pretty smooth.  We are so grateful.  Violet got thru the baths every six hours for the first few days and that wasn't fun, it was exhausting, but not terrible for her.  She ate well thru out, which was amazing as she usually loses quite a bit of weight with the nausea and vomiting.  These drugs didn't seem to affect her belly as much, thank goodness.  She did drop down to zero counts for about three days and on the third day of zero counts she did get a fever, which scared me quite a bit.  When they have zero counts and they get a fever it can be an indicator of illness or infection and they literally have nothing to fight it off with so it can get scary very fast, but thank goodness Violet only had a fever for about two hours and then it went right back down on it's own.  The next day her counts were trying to come up so the doctors say they think the fever was just related to her body working extra hard to bring those counts up and that it wasn't fever or infection.  She recovered her counts VERY fast.  She was at zero for only three days and then she went to 16 then the next day 120 and the next day which was Monday the nurse came in and told us that Violet had SHOT up to 1,330!   So, they let us come home:)  She was only in for two weeks, which is tied for our shortest stay in the hospital.  We did get another MRI that showed the pocket of fluid we were watching was "stable and unchanged"  We will probably have to have another MRI before the next round just to be sure.  But Violet is getting used to them and seems to tolerate them pretty well.  Charlie and I go in with her and hold her hands and they do it so quick she is literally in and out.

We will be home for two weeks, which will be very nice.  Then we will go back in for round 5, I can only hope this next round goes as smooth.  Only rounds five and six to go, can't believe how far we've come.  My girl is a trooper.  It's been a long road and I can see the light at the end of the tunnel.

We did move out of our old apartment.  We were blown away by how much support we had.   The house was emptied very quickly.  Violets illness and treatment have been my only focus.  I literally live with her in the hospital and never leave her side.  I have educated myself as much as I can on all her meds and learning about her treatments.  I have to say I feel very guilty that I have let our housing/moving stuff slip a bit.  Typically I am very organized and love to plan ahead.  But, being in the hospital and trying to move is a nightmare.  We had so much help packing the place which was a TREMENDOUS help.  And then so many showed up to help us get everything out.  Our dearest friend Josh let us put all of our things in his enclosed trailer so we wouldn't have to rent a uhaul and then all our family and friends came to load everything up into the trailer.  When I left Violet in the hospital with my mom to come home to load everything up I was shocked and amazed and moved to see that by the time I got there it was already almost done.  I was horrified when I realized that everyone was working in the heat and that our air conditioner had pooped out and wasn't working.  Everyone was working so hard, without complaint in the heat to help us.  We are so blessed and grateful for our support system.  But in all our haste to get things loaded, we literally loaded EVERYTHING.  After the trailer was pulled away and parked at a friends house, I looked at Charlie and said, we don't even have clothes.  We only have what we had at the hospital.  Oooops, can you tell I'm distracted by Violet being sick?  My poor girl doesn't have any  of her clothes or toys or her bed until we find a place and get things unpacked.  But, Cindy Bish, who is amazing came to the hospital after she heard about our situation and brought with her some clothes she picked up for V so she would at least have something to come home in.  We will get thru this.

Our plan was to move into a rental home, but unfortunately the renters before us have really DESTROYED the house and it was unsafe and unready on moving day.  We are heartbroken for Charlies parents who have tried so hard to help us and disgusted that their cute little house was so mistreated.  They have been working very hard to clean it and get everything together again but they need time and its looking like there maybe some other issues that are really complicating things for everyone.  Sooooo,  they released Violet from the hospital to go home, and we are currently staying with my sister.  My sweet sister has allowed us to stay here until we have a place, but we are currently...homeless.  It makes me feel like I can't breathe just to write it, and see it written out like that.  But, the truth is we are.  It's no ones fault, it just happened.

Cancer is an awful disease that affects SOOO much.  Not just the patient.  We were a happy little family.  I had a job that I was passionate about and grateful for.    I was so in love with my life and my beautiful perfect baby that I had waited my whole life for. And then January 14th happened.  Violet was diagnosed with cancer and nothing has been the same.  Cancer has affected every relationship I have, it has put an enormous strain on everything.  It has created tension and issues in my marriage, marriage is difficult under normal circumstances.  It has completely depleted our finances.  We were a family that lived paycheck to paycheck.  I know that's probably too much information, but we were.  We were getting by, but with her diagnosis and me losing my job, we often find that we can't afford gas or groceries.  Medical bills continue to come.  Somedays I feel like I'm drowning, I literally feel like I can't breathe when I look at where my life is now.  The stress of all of this feels like an ocean that I can never get across no matter how hard I try.  But, then I look at V and see how far we've come, and I see and feel all of you, cheering us on.  Hoping for us, praying for us.  I see the cards come, and I read the messages.  I read every one, repeatedly.  I hear so often, we want to help, we don't know how.  Just that statement helps.  That you WANT to help, that you see the struggle.  A hug helps, a smile helps.  The donations have gotten us thru when we didn't have food.  A meal delivered or a phone call.  You all don't realize that I literally couldn't do this without all of you.  I think of you all daily, and it's what makes me want to keep going when I feel like I want to just lay down and cry.  So, from the bottom of my heart thank you.  It has been very hard for me to be on the receiving end of all of this help and support.  But, I just want you to know, that it does matter, and it does help.  And that I am trying my best to pay forward every bit of it every chance I get, and that I will continue to pay it forward and help others and that I am beyond grateful, and that I'm teaching Violet to be grateful.  Just this week a perfect stranger to us has offered to make beautiful shirts to do a fundraiser for Violet.  I don't even have words for how touched we are.

I am just grateful that my baby is doing so well, and that even though she cries because she is frustrated that she wants her things and she wants to go home, that she has a place to stay because we are loved.  And I have faith that things will work out.  They will.....I just have to have faith.  All that matters is V, and love, and we have so much love, and still so very much to be grateful for.  Thanks for letting me rant and vent.  Lots of love.