Help Violet's Family

Sunday, February 17, 2013

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)


  1. Poor baby we are always thinking of you guys. Stay strong and believe. Have Mr. Charlie call me if he gets a minute! :)

  2. Thanks for the updates. We are all with you in spirit and sending support. Lots of love, Dionna.

  3. Thanks for the updates even though it so hard to read them through the tears. Sending all my love and prayers your way .
    Much Love

  4. Hey Charlie & Dez. My thoughts and payers are with you guys. It's hard to hear any kid go through this. But hits home when it's a family member. Violet is a beautiful girl. God bless you guys. B.J.Meuser

  5. hey guys, it Joe. Haven't talked to you guys in a long while. Karen and I are thinking about you guys, and are praying for the little one. She is a doll baby. If you guys need anything please let us know. We are here for ya.

    Take care, and like I said let us know if you need anything.

    God Bless

    Joe and Karen

  6. We will be praying for Violet - she is precious. You are in the best hospital ever! My son Will was 5 when he was diagnosed with Lymphoma - at the time it was the scariest time of our lives. We did not know what to expect - he too had a broviac - it was a true blessing for sure. He had spinal injections to because Lymphoma can spread to your brain. He is a red head so felt everything - he would have to go to the operating room - so if it becomes painful for her - you can request that they do it all in the O.R. so they can knock her out and be pain free. I can say that although it was scary - he is now 14 and it is the best memory he has. Children's was so wonderful that he has nothing but good things to talk about. I know it is scary - but know that she is in the best hands possible. Please let us know if you need anything. I know that you don't know us personally - but we have been there. Even if you just want to talk - I am an ear!! I do have some advice for you - Don't listen to all the stories up there - I had some people telling me horrible stories and it freaked me out - everyone is different... remember that!!! :) My son has been in remission since 2004 and I believe that Violet will be in remission soon as well. Thank you for sharing your story!

  7. I wanted to let you know that I came across your story and am praying for violet to have a quick, smooth recovery and that she is healed and for her cancer to NEVER EVER return. I do have one question, how did you come to find out about the brain tumor?

  8. Charlie, Dez, and Violet, We just wanted you to know how much we think of you all and know you are doing everything you can for your little Violet. This is a very difficult time for you but I agree with Nichoal (who I hope to meet someday) that Violet will remember this is all good. And how wonderful to be held all the time! To get to see Yza Yzi and Deg so much and enjoy all the wonderful team of nurses and doctors there. It must feel like one big hug all the time for her. I am jealous though and wish I could see her and hug on her too. That will come soon enough. She just needs to get better. This is an experience none of us will forget but we look ahead to much better times and sharing lots of love in the days ahead. Aunti San and Uncle Craig

  9. In answer to your question, we never suspected anything. She had random vomiting, like once a day and fine before and after, no other symptoms. We have an amazing pediatrician who was aware enough to order a precautionary mri, and boom an atom bomb was dropped on our lives.