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.