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.

Chemotherapy round 4 day 8

I just put V to bed for the night.  She is doing pretty well.  This round is all new to us.  It is the first "high dose" chemo.  We came in early last Monday, and Violet got her hearing test.  They check her hearing before every round because the chemo can affect and damage hearing.  The tests came back perfect.  Then she had a limited MRI. I know I had mentioned earlier that Violets neurosurgeon noticed an area of her brain that he wanted to monitor.  Basically, the way that he explained it to us is that the area of the brain called the ventrical is a void where spinal fluid flows thru, it has a valve that opens and closes to allow spinal fluid in and out.   He believes that one of Violets valves was damaged by her brain tumor, and that now it traps spinal fluid so it isn't opening to let the fluid back out appropriately.   So hes concerned that it is causing pressure, and that he may need to go in and open that area up at some point. But that he saw no evidence of tumor, which is great news.  He asked us to get the limited MRI pictures to check on that valve before this round.   The pictures showed some improvement, so he felt comfortable for us to move forward with chemo.   We will have another limited MRI on the 3rd of June to check it again.   My standpoint is, clearly I don't want her to face another neurosurgery, but this one to repair the valve would be very minor, and he may not have to do anything at all.  It may heal on it's own, which would be awesome.  I love watching how Violet interacts with our neurosurgeon. After everything she has been thru she has a slight anxiety when it comes to anyone in a white coat, but she seems very calm and loving with him.   Its like she knows that he literally saved her life by standing over her for 16 hours tirelessly operating to get that nasty tumor out.  I think she recognizes his voice as he must have talked to her a lot while she was asleep during surgery.   Anyway, it's amazing to see the bond between them.

So, we got two new chemo drugs Monday and Tuesday.  One of the drugs require baths every six hours around the clock for four days.  So, she got baths day and night at ten and four.  By day four I was so completely exhausted as there was no sleep with this schedule.  But, I was amazed at how well our girl tolerated them.  She cried a bit everytime but always cooperated.  It MAY have helped that she had male nurses all four days that were very sweet to her.   She's a flirt:)   On Thursday she got her rescue stem cells that they collected way back at round one.   I was very excited as they brought them in, it felt like we were doing something awesome.  I like that they call it a rescue and that it is literally Violet rescuing herself with her own cells.   When they hooked her up to get them they told me that the cells are kept in a preservative and that it smells bad.  THEY WERENT KIDDING.   Think rotten creamed corn.  Our room reeked for a good 24 hours after.  You could smell it down the hall.  After the stem cell rescue she had to sit and have heart monitors and blood pressures every 15 minutes for 6 hours.   She did so great, and was so patient and still.

Now her cells have started kicking in and all her counts are super high, but the chemo hasn't attacked yet.  So, we are just waiting for that.  Her chemo will kick in at some point this week, knocking her to zero, leaving her weak and prone to illness and fevers and infection which can be very serious.   Then her rescue cells will fight back bringing her counts back up and we will get to go home.  Theres no knowing how long this will take, or how bad it will get.  But in the meantime she is fairly happy, eating well, and playful.  Its the calm before the storm.

She amazed us one day as we were walking the halls and her doctor saw her and said "Hi Violet, how are you?"  To which our little genius replied "Hi, I'm nauseous"   My jaw and the doctors hit the floor.   Did she just say nauseous????  She listens to everything here, and is learning all the medical lingo.  It's incredible and kinda sad.  She says heparin, (one of her meds) and nauseous and chemo, and helps the nurses thru every step of her care.

Among all the stress of Violets illness and care, we are moving this weekend.  It has been hard but with the help of my family and dearest friends we were able to get our apartment packed before we came to the hospital.  Moving is a huge stress but we are soo beyond grateful for all the help we have received and volunteers to help Saturday.  There is no way we could do this without you.   We were unable to stay where we are now as we cant afford it anymore with me not able to leave V to work and with all the medical bills.  But Charlies Mother and step father very lovingly are letting us rent a home from them, and the payment will be better than where we are now.  Charlie will be able to walk to work if he needs to, which is good as a few weeks ago his car completely quit on us with engine trouble.   We were able to find a very cheap car that is ugly as sin but mostly runs to get us  by for now.  But needless to say we have had a lot going on and lots of added stresses.  I lay in bed every night before I go to bed and think about all the things we have to be grateful for and all the love and support we have.  Beyond grateful to all of you.  This experience has definitively taught me what is important.  We have no money, and have to move and have cars that barely run, but we have a beautiful little girl, and the most amazing support system anyone could ask for.  Thank you to everyone reading this for all the love and support

Every round we meet new families, which is hard as you see more and more children get diagnosed and face this scary journey.  We have had several families that have reached back to help us when we were diagnosed, and they have been incredible support and guides.  The Bish's the Wellings, and Erika Decker were my amazing helpers when I wasn't sure I remembered how to breathe, and I have tried very hard to pay it forward by introducing ourselves and reaching out to new families.  Violet continues to make new friends.  She is thrilled that her sweet William is here with us this round.  Tonight in the playroom Violet took William by the hand and just gazed up at him as they walked around and around together.  William is quite a bit older than her, and is very big brotherly looking out for and protecting her.   She calls him MYLiam.  He got her a pop up play tent at a carnival his last admission and saved it this whole time to give to her.  She looks for him everywhere and worries when she hasn't seen him all day.   She hadn't seen him in several days and kept asking for him and I told her he wasn't feeling good so she took my mom to his door and wanted to put a heart sticker on his window for him. :)  One thing I can say is that this experience has created bonds I know we will keep for life and we all look out for eachother like family.  Despite all the fear and stress and how horrific this has all been we have found so much light from all the incredible people in our lives.  Thank you so much for your continued love and support.  Lots of love

Home and day of MRI scan

 Violet and Daddy meeting some of the OSU mens basketball players who came to visit the oncology patients.  Such sweet guys, Violet refers to them as friends anytime she sees this pic.

 Cuddling with her baby, and visiting with our dear friend Cindy Bish.  We LOVE Cindy

 Violet, Mommy, our sweet friend and fellow oncology patient Sam and the Columbus Blue Jacket players who are Violets new friends.  Love her face in this pic.

 My sweetest, cuddly girl.

 Art therapy, painting with spaghetti.  She always amazes me with her artist talent.

 She has Daddy wrapped around her little finger, she talked him into pushing her around in her baby doll stroller.  So funny

 We adore the nurses on the 12 floor.  Violet is so into her dolls.   The nurses took her dolly down to the nurses station and all put masks on and performed "surgery" on doll, as Violet looked on to give her "tubies" just like Violet has.  Violet was BEYOND thrilled that her doll looks just like her, and she can care for her baby while they are caring for her.  So impressed with the care and love of all of our nurses.

These are the children of a very dear friend who lives in Dubai.  They did a cancer run as a family and carried a sign they made in honor of our Violet.  Violet has GLOBAL support.  I am moved beyond words.

We were released Sunday morning from the hospital after a 17 day admission, for round three.  Violet was so excited to put her regular clothes back on and her sparkly twinkle toe shoes.  She danced down the hallway out of the hospital singing about going home.  The third round went fairly well, although for whatever reason as I mentioned before I think it was very emotionally hard for me.   But, we are half way thru!!!!!  Only three more rounds to go.

We are so loving being at home.  We sleep with the windows in our bedrooms open at night, and Violet sleeps so peacefully in her bed, almost 12 hours a night.  We have had lots of play time outside, lots of walks and exploring.  Loving the warmer weather.

Today we went back to the hospital for a very detailed brain and spine scan.  I was a nervous wreck.  Violet hasn't had a detailed scan since before brain surgery.  I knew this was a big day, as I knew they wanted to make sure the brain tumor wasn't returning, and that they had really gotten it all out in the first place, it was another make or break day.  Because the scan is so detailed it takes two hours to complete.  So Violet needs to be sedated, which meant she wasn't allowed to eat anything last night or today.   We got up to the hospital early this morning to go to clinic to make sure her blood counts were stable enough to do the MRI.  Her counts were good, and she was so cooperative and pleasant for a little girl who woke up way too early and had a completely empty stomach.  After we got the all clear there we went down to the surgical prep area, and checked in.  We put her back into the hospital gown and waited.  She fell asleep in my arms and shortly after, they came to take us down to MRI.  Anyone who has any dealings with Childrens knows that nothing is ever on time.  We ended up waiting for her MRI for an hour and a half.  She started to really lose it, rightfully so, as she was exhausted and starving.  I was beside myself with worrying and exhausted from trying to keep her happy and entertained.  They finally came to take her and I just can't describe that feeling, of handing her over.  It is one of the worst parts of this.  But, they took her back and put her to sleep and Charlie and I went to get some food.  I was sobbing, almost sick.  And my amazing Momma showed up to support us.  We all had lunch together and waited to hear that she was done and in recovery.  It was another day I'm not sure I could have made it thru without my Mom.  She is amazing and I am so grateful.  After about two and a half hours we went and waited with all the other basketcase parents in the surgical waiting area.  As soon as she started to wake up they took us back to her.  There she was my strong, brave little princess in her cage bed, sound asleep, snoring softly.  They told us that she was still pretty tired and just to let her rest for awhile longer.  She was all wrapped up in snuggly blankets and looked so sweet.  We did our best to leave her alone, but after about twenty minutes the nurses gave us permission to talk to her and try to rouse her a bit.  She opened her eyes but they were crossed and she was still pretty out of it, I stepped into her line of vision and said, "Hi girlfriend, it's momma, I'm here"  She immediately tried to sit up and reach for me.  Melted my heart.  I picked her up and we all loved on her and kissed on her and then the nurse came into check on us.  She called up to let our oncology doctor know we were running WAAAAY late to our appointment with her to go over the MRI results.  Then the phone in our room rang, know let me take this oppurtunity to go back a step.  The day Violet was diagnosed was by far the worst day of my life, it was horrifying.  I took Violet up to childrens for a ct scan and NONE of us thought that it was going to result in anything, it was just a precaution.  So, I drove her up there, and they did a super fast ct scan.  I picked her up and told her we could go home and take a bath and get lunch now, and the technician said, if you can just follow me back here you have a phone call.  So, I ignorantly followed her back with Violet in my arms and there was a phone ringing.  I answered it with a smile and said hello, on the other end was our pediatrician.  She said immediately "I'm so sorry, Violet has a massive brain tumor, she is in serious danger I am sending a neurosurgeon to you right now."  I was DEVASTATED, and to say I was shocked was a huge understatement.  So today, waiting in that little room holding my girl, when the phone on the wall rang, I immediately got a HUGE pang of terror, I got an instant headache and started shaking.  Charlie answered it and said the doctor wants to know if it's okay to give results over the phone.  I could barely speak, I was so afraid Charlie was going to have that same moment of having our lives change forever AGAIN over a phone call.  This whole experience has made me hyper aware.  I scan faces and evaluate tones in voices in a millisecond.  I was studying Charlies face and body language immediately, I looked at my mom shaking and scared and said "this is really bad, it's bad, I know it's bad"  Charlie looked up at us and said "doctor says the brain and spine look good"  Anyone who REALLY knows Charlie knows....he is mellow....like scary mellow and pretty hard to read most of the time.  He was on the phone after that for what felt like ages, with no facial expression what so ever.  Just nodding and saying yes, I understand.  He hung up and said that the doctor said the scan came back clean, that there was a pocket of fluid where the tumor had been, that they are going to continue to monitor, her brain is still healing and trying to figure out what to do with the void that the tumor left, but that Violet looked good.  YAYYYYYY!!!!!!!!! I could have danced allll the way home.  We got her dressed and we walked back to the parking garage outside per my request.  I feel like today is the first time I really felt the sun again.  So tremendously relieved and grateful.  Violet is sleeping now.   I think we will all sleep well tonight.

I want to say yet again, how grateful we are.  To all of you.  I could never dream of getting thru this without all the love and support.  Thank you to our dear friends who have brought over food, it helps so much more than you realize.  Thank you for sharing our story, thank you for caring, for the prayers and well wishes, thank you for the donations, without which we wouldn't have gas to get V to the hospital for her appointments, or food.  Thank you so much to our families.  I am so moved by all the love and encouragement we have gotten.  I can't wait till Violet is older so that I can help her understand how loved and cared for she is.  Tonight we are so very grateful, for a clean scan and for all the love we have in our lives, and mostly for all of you.  Thank you soooooo much, lots of love.

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.

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. 

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

Chemo round 1, day 16

Groin catheter

Day sixteen........ugh.   It's been a rough couple of days.  Violet got her last dose of chemo for this round on Thursday.  The original plan as I had shared earlier was that we would be getting apheresis, which means basically harvesting stem cells from V to be frozen and used at a later date to help her recover.  The first step in apheresis is to have a line put in which means a very large IV.  They put a very large IV into the groin artery and then the next day they harvest the stem cells.  The actual apheresis process requires having V sit for 6 to 8 hours while a large machine is hooked up to her lines in her groin, the blood is pulled out one line and then sent thru the machine which collects the stem cells and then the remaining blood minus the stem cells is cycled back into her other line in her groin.  So, we were orignally slated to have the line put in Wednesday and to have the apheresis on Thursday.  After they are sure they have gathered enough stem cells the line is removed from her groin and we go home for a week before we come back to start round two of chemo. 

I have learned many lessons thru the process, the first one being.....I know this may come as a bit of a shock but....I'm a control freak.  I wake up at 7 am on Saturday morning.  Take stock of my kitchen and make a list of all the items I need based on where they are in the store, and then I put a star beside the items I have coupons for.  I love having a plan.  Having a child with cancer is a TOTAL loss of control.  You have no control over any part of it, so that's the first lesson for Mommy, let go of any sense of control.  Secondly, good luck making any plan.  Because everything here is fluid, things change at the drop of a hat.  So Wednesday came they drew blood from V, which is a daily occurance thru the port in her chest.  In order to put a line in her for apheresis  her blood counts have to be at a certain point.  Well, her blood counts were very low as a result of her chemo so she wasn't ready.  Her blood counts stayed at zero for three days, which is scary because she has no immune system to fight sickness and infection.  Which is also scary because she has a huge tube coming out of her heart.  And because Violet is very active and covered in bruises because of lack of platelets.  Three days of zero count, a little girl who doesn't feel well, and frustration over not getting to go home.  I kept setting myself up every night thinking in the morning she will have a higher blood count.  We would wake up and see, no still a zero.  :(  The days are grey and walking the same halls starts to affect you.  You forget what your bed feels like.  On the roughest day when mommy was feeling exceptionally defeated, I held V in my lap and was snuggling her and her hair was just falling out.  I sat and just lightly rubbed her hair until it was all gone.  She seemed relived but it hurt my heart so bad and as soon as she fell asleep I just sat and silently cried.  Then I decided it was time to move on and swept it up and kissed her newly bald head.   Then that night  I was walking the hall to go to the family lounge and I passed a family coming in with a child on a hospital bed who was clearly VERY ill, and I stopped in my tracks.  The visual shook me, then I realized they were wheeling the very ill girl right down to the room right beside ours.  Right behind the very sick child came about 50 very sad looking people who somberly walked into the room beside ours.  I came back and told Charlie I was shaken at what I had just seen and told him I was concerned.  This is when several people came out of the room beside ours stood in our doorway and started to hug and sob.  I put two and two together and realized the large room beside ours is a hospice room.  I laid on my uncomfortable hospital bed that night knowing that 5 feet from my head a life was being lost, parents were saying goodbye for the last time and I was knocked to a new low.  This place is full of hope and I am so grateful that our doctors are so incredible and optimistic and have such a great plan.  But, when you walk and see every room has a child, every room has a story it does affect you, even if you don't have a child here.  I feel self centered that prior to our diagnosis I had such little awareness that this is going on, everyday. 

I apologize that todays blog is so depressing but the truth is this is an awful rollercoaster ride, and there are very dark moments among the smiles and playing.  So back to V, she had a zero count for three days, which is scary, despite her low counts V wakes up everyday and smiles and plays, she has been incredible, and I can say in full confidence that often it is harder on me as her Mommy than it is on her.  She is just a typical 17 month old, she just wants to play and explore and she has no awareness or concern about being sick.  Which is a blessing.

So day after day of low counts, I surrender entirely and realize we won't be home for the weekend and I have no expectations about her counts coming up.....BOOOM the nurse wakes me up day four or zero counts and says her counts are now at 500 they want to proceed  with putting her lines in this morning.  I have a yeah moment, and then get a dose of fear as I realize this is yet another procedure where she will be sedated which is always a little scary.  So, the nurse says, "yup, she looks great except we need to give her this med before surgery to prevent bleeding." So they bring it in and two minutes in V wakes up out of a dead sleep and starts a scary choke/cough.  I immediately say to the nurse "stop, something is happening. We need to stop."  So she stops the med and says that V is having a probable allergic reaction, they will give her Benadryl.  Which they do and V falls back into a deep sleep.  I almost start to breathe again as a very worried Mommy, it is terrifyig to see nurses RUNNING down the hall to your room, hearing alarms going off and your child gasping for breath.  So they get the alleric reaction under control and the nurse looks at me and says, "we are gonna push forward, they are coming to get her in an hour for surgery we have to push the meds again."  I'm holding my breath again, and Im sweating.  She successfully gets the meds pushed and they take V down to put in the line for apheresis. 

The procedure went smoothly, they bring us back to see her in recovery and there's my brave girl, sleeping soundly.  They let me hold her, she woke up and looked down at her tiny leg now with a big invasive contraption coming out of it, she reachs down and playful taps the tubes together and says "go", she is unaffected and ready to go back to her room:)  We brought her back upstairs where the doctors told us the line is probably very uncomfortable and painful and that she will be quiet the rest of the day and pained and that she won't want to bear any weight on it.  As they are telling us V stands up in her bed and starts to jump and laugh:)  That's my girl.   

She was so playful and happy yesterday in fact that we had a hard time wrestling her.  She bled more than usual because she was all over the place, which means today they will have to change her dressing.  Which she HATES.    Anyway, last night they say we want you to have some time to relax we want you to have a nice quiet weekend she won't get shots this weekend.  Put her to bed, go to bed early yourself.  I do as they say and within an hour a doctor comes in....."Yes, Ms. Murphy, your daughter has an increased risk of blood clots because of the line in her leg because she is so small and the line is so large so we need to give her two shots  day to prevent blood clots."  So, now we went from enjoy your shot free weekend to two shots a day and something new to have a sleepless night over.  They give the shot she cries and falls asleep, I put her to bed and literally crawl to my sofa utterly exhausted, and several hours later the nurse wakes me, "I took her blood samples but they got sent to the wrong department, I need to redraw them."  This of course wakes up V, get her back to bed, several minutes later "Violets potassium levels have just completely dived to a dangerous level.  We need to infuse potassium immediately and get her on a heart monitor as this can cause severere heartbeat irregularities."  Aaaaaaand I feel sick, are you kidding??  So, I jump up and call my mom in tears exhausted and scared, and the nurse comes back in and says, "I'll redraw the blood again so we can double check", they recheck and things come back several points higher.  Disaster averted. What just happened?  Lab error, a quirk, a flux in potassium, no one knows.  We give her some potassium in her IV and I fall asleep sitting in the rocking chair holding her.  Now, you are caught up. This is our life the last few days, rolling with punchs, fears presented we didn't know could even be a fear, V is unaffected and strong, mom is near breakdown.  That pretty much sums it up.  Discharge dates come and go, we are assured that at some point we will get to go home.  Everyday has its challenges that we sometimes eek over but we always clear, and today is no different.  Today we have to change a very bloody dressing on her new leg line, which will cause V to flip out.  But, we will get thru it.  We are shooting for apheresis on Monday, but we will see, let go of control Mommy, there is no control.  We will get home eventually....and V continues to smile and play. Lots of love.