Chemo round 1 day 11

Eating Fries!

Massage Therapist

Monday afternoon, Violet is sitting with her massage therapist blowing bubbles and giggling:)  She is feeling better today after a somewhat tough weekend.  In fact I just realized last weekend was rough too.  Anywhooo.......Saturday we started to see her blood counts drop which is to be expected and is a symptom of the chemo.  As I mentioned in a previous blog the chemo doesn't know the difference between good cells and bad and so it attacks ALL rapidly developing cells.  They draw blood from her tubes in her chest, and test her blood and measure several different blood cells.  I ask for a print out every morning and I'm trying to educate myself on this whole process.  So, basically Vs white blood cell count currently is zero, which means that she has no immune system or ability to fight infections so we just have to be very careful, lots of handwashing and somewhat isolated, due to flu season.  This entire floor of the hospital is air locked so we are allowed to walk a round this floor, which we have done seriously a million times.  But, no visitors or real adventures:)  This is a time when we are somewhat anticipating a fever and potential mouth sores.  So far we are just seeing a decrease in her energy level, she's very mommy clingy and her appetite has dropped off significantly.  They hang a sheet of paper on her door every morning for us to write down every thing she eats and drinks to measure her calories.  We also weigh her daily and keep a close on her weight.  They even go so far as to measure every diaper on a small scale.

On Sunday V wouldn't even let me get out of the rocking chair with her, she just wanted to be held and snuggled.  She was pretty fussy, and wouldn't eat and then she did decide to eat some Doritos, of all things, and then was sick and vomited.  We put her back on an anti nausea medicene and the suspision is that it is still some nausea from her chemo treatments.  The other thing we are watching is a slight difference in her walk,  one of the chemo drugs can affect walking and although what we are seeing is probably not because of the chemo, we are watching it closely.  It could be just that she's weak from not eating and out of practice. 

Today her numbers for her blood are even lower than yesterday but she seems to be in better spirits and has already eaten a little bit, but not much.  She has had music therapy this morning.  I have been able to get away a bit, I went down this morning and took advantage of the free parent massage.  It was so nice to do something for myself.  And even though it was only ten minutes it was amazing.  I am allowed to get two free massages a week.  So, as of right now we are kind of laying low today and recovering and then the plan is Thursday to do her stem cell harvest.  They will be doing the surgical procedure to put in a large port in her groin area on Wednesday and then Thursday hooking her up to a big machine that pulls her blood and separates the stem cells so that we can freeze them at OSU and then give them back to her after her last three rounds of chemo to help her recover.  If everything goes well, we will have the stem cell harvest Thursday and then maybe (fingers crossed) go home on Friday.   SQQUUUEEEEEEEE.....So, we would get a few days break before we start round two of the chemotherapy. 

We are still receiving lots of support from family and friends.  We continue to feel the support and appreciate it greatly.  I am concerned as we have had several visitors that have driven down to the hospital hoping to see us or V, and they were turned away.  Because of Violets fragile state she is not allowed off the floor and visitors are not allowed up, also, because I am generally here by myself I can't leave her to come down either.  I'm so grateful for the love and I am so sorry that some have had to waste the gas money and time.  Please know we are grateful for the support but can't accept visitors right now.  Thank you for understanding.

We have also been asked several times about the donation process.  At the top of the blog is a place to donate to our family with a secured link.  If you have any questions please let me know.  I am so blown away by all the love and support that we have gotten and the financial contributions are greatly appreciated.  Being up here with Violet is my new job, being her care giver.  I am no longer able to work as caring for her is more than full time, we are really struggling financially as we were not prepared for this and the medical bills are starting to roll in.  Lets just say WOW!!!! Medical care is CRAZY expensive.   Thank you so much to everyone that has donated, we are so grateful.  Thank you for following our journey.  I will update again when I can.  Lots of love

Violets first round of chemo day eight



Violet and her friend Abby



Violet, C and Abby with her
Monkey hat

Violet has had another busy day.  She just got back from a playdate in the toyroom with another little girl, who is also a cancer patient.  Violet has quite the life up here.  All the nurses love her, and really enjoy her, they come and visit her even when she isn't their patient. 



The view from our room

She wakes up in the morning and it is fun to see who our nurse is for the day.  Then we snuggle and open the blinds to see her brand new day.  The view from our 12th floor room is stunning and makes Columbus look so beautiful.  Then we order her some breakfast that is delivered on a tray to her and she loves to pull the top off the plate to see what she has.  Her appetite the last few days has been a little rough but seems to be a little better today. 

The oncology playroom

Then she has a flurry of visitors from the hospital staff.  She has a recreational therapist, which basically just means a person with lots of fun toys who comes to play with her. She also has a massage therapist, who she adores, and tackles everytime she arrives.  They listen to music together and she gets massaged to help her to learn and remember that in the hospital not all touchs result in "ouchies".  The doctors make their rounds and V and I go and stand in the hall, and listen.  Then she also has a music therapist who comes to the room and plays music and they sing and play instruments.  They also do group music therapy, so she can socialize with the other kids on this floor.  We take lots of wagon rides, and lots of Violet parades.  They also have a fully stocked toyroom where she goes and runs around like a maniac.  Charlie and I joke that she is almost happier here than she is at home as there is always something to do and people to play with.  

This is what the broviac looks like. 

So, her chemo.......she has what they call chemo rounds.  Which just basically means a full chemo treatment.  Her rounds are 21 days apart.  Day one she gets three chemo drugs.  Days two and three she gets two other chemo drugs. They just wheel in her IV pole and the chemo just looks like another IV bag. They do these in the evening.  Some of them take only a few minutes to "infuse" while the longest is four hours.  So far she has just slept thru the chemo as it is painless.  She starts to feel the affects almost exactly 24 hours later.  She was pretty sick to her stomach two nights in a row which was hard on all of us. She vomits and gets so panicked as she doesn't understand what is happening.  It is difficult with her age because we can tell she is uncomfortable or feeling bad but she can't tell us specifically what hurts and how bad.  But, what I will say is that the nurses are very good at keeping any pain completely under control as well as nausea.  Then she has 4 days to rest and then they do another small dose of chemo that comes in a syringe and just looks like a shot, but it goes into her port on her chest, she gets that again on day 14 and she gets a week to rest before the whole process starts again.  Because this is her first round we are hospitalized longer because she had to have the  surgery to put the port into her chest, and because they are keeping her for observation to see how she handles everything but also because after you receive chemo your white blood cells drop.   The chemo works by attacking any rapidly developing cells, the chemo can't tell the difference between good and bad cells so this means that good cells are also damaged. 

So several days after the chemo treatments we are expecting her white blood cells, the good cells, to drop to zero.  Meaning our V will have little to no immune system and she will almost definately spike a fever.  We just have to watch to make sure that the fever is not an indication of a serious infection and then her white cells will start to come back up.  She is given a shot every evening that looks almost like a insulin shot.  It boosts the white blood cell count.  Which can also result in bone pain.  She has been a real trooper so far.  The nurses give the shot in her leg when she has already fallen asleep and she just wakes up and grumps a little and falls right back to sleep. 

One of the other reasons we will be kept longer this time is that when her white blood cells come back up we will be doing another procedure here in the hospital to harvest those white blood cells to boost her later.  After our first three rounds of chemo she will be given high dose chemo and also the white blood cells that we harvest to boost her back up.  I will explain that better later as that comes closer.   What I can say is that we are very well looked after and that V is not up here just laying in a bed miserable.  Not even close.  She is doing as well as they can ask and often even better than they would imagine.  We are hearing very hopeful things and we are getting thru day by day.  More often than not she is playful and happy, and making all of us laugh.  



Our girl sleeping peacefully

I just want to take a minute to say how touched I am by all the love and support we have been shown.  Our family has been amazing, and supportive.  I am blown away by how many people are following our story and take the time to read my blogs.  If you have any specific questions please feel free to comment and I will address them as best I can.  I lay in bed at night, afraid, overwhelmed and missing my old life.  But, then I look over at my strong girl sleeping soundly in her bed, leading the charge and think about all of you out there cheering us on, and supporting us.  I am humbled to know we have lots of love from so many, friends, family and also people we haven't met.  We have prayers and well wishers in Dubai, and Turkey and all over the nation.  We FEEL the love and support more than you know, it is beyond helpful and comforting.  Sincerest thanks from the bottom of my heart.  Also, thank you SOOOO much to everyone that has donated to our family thru the blog.  This has been such a nightmare diagnosis which was only made more scary by the fact that we are down to one income and bills are coming in.   The financial burden is so hard for Charlie as he is needed here and also at work.  We are a young family and were not at all prepared for this financial blow.  So TREMENDOUS thanks for all the donations.  It helps us to have one less thing to stress about.  Lots of love, I will post again soon. 

Chemo; First round, day 5

Right before broviac operation

Our smiley girl waiting for surgery

Today is day five of our hospital stay.  The first round of chemotherapy is underway. It started with an operation to put in her broviac cathader along with a spinal tap.  A broviac is basically a way to make the chemo and testing easier.  It's a fast surgery where they just inplant a small tube into a major artery in Violets chest, I believe into her heart, and then she has two small tubes that come thru her skin to the outside.  So basically it is a line directly into her chest. They also performed a spinal tap, which is just sticking a needle into her spine to draw out fluid which they test for cancer cells as Violets cancer was in her brain on the part of the brain that creates and absorbs spinal fluid.  So there was concern that her cancer could spread to her spine.  We had an MRI of her spine that came back great and her spinal fluid came back clean of any cancer cells as well:)  YAY!!!!!! 

The surgery went smoothly and we were admitted to the oncology (cancer)floor right after recovery.   The first day and night were spent just recovering and getting settled.  The second day we had some tests to do before they could start chemo.  We had to have a kidney test as a baseline as the chemo can affect kidney function, and also had her teeth cleaned as our silly girl had several weeks ago bit into a green crayon and somehow managed to get a fleck of crayon under her gumline so we had to have that removed and her teeth cleaned.  Vs first dental visit was at the hospital:)  

Smiles in the hospital

Then the second day we started chemo at night around bedtime, which is so nice as she can sleep thru it.  The broviac has been a real blessing as they can administer IV fluid, meds and chemo into the broviac while she is sleeping or playing and she doesn't feel any of it.  It prevents them from having to stick her with needles everytime they need to give meds, they can also draw blood work from it which again prevents a stick with a needle.  We have completed three days of chemo at this point and we are starting to see more side effects, she has been very sick to her tummy around bedtime with vomiting and nausea but what I can say is between the vomiting she is still in great spirits and playful. 

  All the nurses love her and know her well.  She has formed some good relationships with them and plays with them and ALWAYS flirts with the male nurses.  :)  We are starting to see her hair thin, and today is the first day she seems somewhat quieter.  Up until today she has almost been too active and well. 

V with all of her babies

Here comes the Violet parade

We have had a hard time keeping up with her.  She has been taking soooo many walks in the halls and stops and says hi to all her friends in the other rooms.  She also takes wagon rides with us.  They supply wagons and we can just put her in and pull her around this floor.  We call it the Violet parade as we also have to wheel our IV pole with us.  So it's typically one of us pulling the V wagon with V and ALLLL of her many baby dolls in the wagon and then someone walks behind with her IV pole.  She has one of her baby doll that sings and she waves it around and makes it sing to the other kids here.  She also attempts to throw them baby dolls.  Thus the Violet parade. 

The cute ponytail hat my mom made her

The monkey hat mom made her

My bunny girl

She also has many adorable hats that my mom has made so all the nurses look forward to the V parade to see which cute hat she is sporting. 

We have had alot of support and we are SOOO grateful to all our friends and family.  But, I just want to take a minute to especially thanks to my dearest bestest Mommy, she has always been such an amazing Mom but thru this process she has cried with me, made me laugh and been the best source of distraction for V.  V calls her Yza Yzi and today our bestest Yza had to leave us for the first time in this whole process to go home because she has to work and we all cried when she left.  She will be back when she can around her work schedule  Also, Charlie has been amazing and supportive, and the BEST Daddy.  He is the best V wrangler and play pal.  Yesterday and last night I started to feel bad, which made me very nervous because chemo completely depleits Violets immune system so we have to be so careful about any germ exposure.  So my big sister Deirdre and our Yza Yzi very lovingly volunteered to stay with V last night so I could go home and sleep in my bed and rest and go to the doctor today to get checked.  V was sick to her tummy again last night and I am soo grateful that they were here to sit with V and help her thru it.  I slept like a LOG and woke up first thing this morning to go to urgent care. 

V in her cage/bed

Daddy snuggles

I have a sinus infection and I started antibiotics and have to wear a mask around V just for today until the meds start to work and I am not longer contagious.  V doesn't like it and keeps trying to take it off me.  "mama off" :)  She is currently playing in her bed/cage :) with Daddy.  Today is just resting she won't have any more chemo until day 7 which is a few days away but she will have to start getting nightly shots to build her blood as her counts will completely drop in the next few days probably causing fever and she will be very fragile immune wise.  Please know we feel and appreciate all the prayers, well wishes, love, and cards.  I will try to keep this blog updated as best I can with our progress and reports.  Love and hugs

Written by Desiree'  (Violet's mommy)

The start of our journey

The start of our story

Written by Desiree' (Violet's mommy):

On January 16th, 2013 our lives were forever changed when Violet was diagnosed with a very rare form of pediatric brain cancer 

(choroid plexus carcinoma) and a large mass was found. 

Our girl is strong and cuddly, determined and sweet.  She loves baby dolls, reading books, Mickey Mouse and pizza.  She recently learned to walk and her vocabulary is expanding every day.

Her father and I met in middle school.  We dated for 7 years, and have been married for 2.   Violet was a VERY wanted, dare I say needed child.  I've wanted to be a mommy for as long as I can remember, and Violet is our dream come true.  Violet and I spend 24 hours a day every day together.  I was very lucky to even be able to take her to work with me every day.  We were never apart.   I don't know how to be me without her.

We are very grateful that we live in Columbus and were therefore admitted to Nationwide Childrens Hospital.  One of the top hospitals in the nation.   After the mass was found we were immediately admitted and within 48 hours we were in neurosurgery.  Dr. Eric Jackson is an amazing neurosurgeon who spent 16 hours operating and removing the entire tumor.  His determination has inspired us and has given us the best possible start on this terrifying journey.  Violet is a couple weeks out of surgery now and is stronger and happier than we have ever seen her.   She has been the leader thus far and has show amazing courage and resiliance.  As this is a very rare form  cancer we are not given a lot of information on what to expect. It has been more terrifying than you can imagine.  Violet will be starting 6 rounds of very aggresive chemotherapy on Wednesday February 13th. 

This is the darkest time of our lives but we have seen so much love and Violet has been a light in the darkness.  She smiles and keeps us laughing.

Violet is writing her own story and she has lots of  love and support. 

We are a young family and were not prepared for this blow on any level.  Including financially, we have health insurance but are already overwhelmed by the medical bills and cost of trips back and forth to the hospital and missed work to be with her thru treatment. Prior to this diagnosis I worked as a nanny and so I have lost my job and half of our family's income.  It is a very uncomfortable position to have to ask for or accept help.  But, we are blown away by the love and outpouring of support for us, and we are forever changed and grateful.  Thank you for being part of our Violet's story.