Violet's Story: Being "done"

Ultimately we decided to stop chemo after 5 rounds. We were supposed to have a total of 6 but EVERYONE involved felt that Violet had had enough, and that 6 rounds were not needed. It was difficult but we made sure we got all the information and that we were doing what was best for her. So after deciding that we were done with chemo, we were scheduled for her scans. Scan week is HELL, it truly is. You get your scans done and then you have to wait days for results, and everything literally stops while you wait for answers. You worry about the what ifs. Those few days drag on and every time your phone rings you about jump out of your skin. So, we were told to come up to the hospital for results, which in itself scared me as I knew they don't just call you up to the hospital to tell you that you are fine.   We got to the hospital and waited to see our nurse practioner. When we got off the elevator I saw my hospital appointed psychologist waiting for us, and my heart stopped. I thought to myself, it's bad, they have called my psych because they know we are going to flip out. So, I went to her and said "tell me, you know don't you, just tell me" I felt like I couldn't breathe. I had a hard time holding Violet. All my senses were heightened. I scanned her face for any sign of emotion. She looked at me and said "I just know you are getting results today, I don't know anything else. I just wanted to see how you are" Pretty sure I just answered her question. I was CRAZY. We waited for what felt like forever for the nurse practioner, I literally felt like I was going to black out. Finally our nurse practioner walked in and announced that Violets scans were "beautiful" that she was clear.   YAYAYYYY!!!!!!!  I was immediately exhausted from being so stressed.   She showed us the scans and smiled. I asked "can we schedule Violets next dressing change while we are here." Violet still had her tubies in her chest, and the dressing on them has to be changed once a week, a process that Violet hated and feared. But, I wanted to just get it scheduled while we were there. The nurse practioner looked at me with a smile and said "how about if we take them out before they are due to be changed again." I was in shock, Violet had her tubes since February 13. I wasn't sure Violet remembered a time that she didn't have them. We scheduled to have the tube surgery to have them removed, which just made me feel even better. and then she said "Violet will ring the bell today, signifying that she is done with treatment. Let's take her out right now." SHOCK, TOTAL SHOCK.   I was still trying to wrap my head around being done with treatment, and now we were scheduling her surgery and we were going to be ringing the bell.. WOW!!!! Violet walked out into the hall with us and I told her you need to grab this rope and ring this bell as hard as you can, so ALLL the kids can hear you. V looked at me like I was crazy, she had no idea what was going on and the significance of all of this. I had to help her ring it, several nurses were standing around and they clapped. Violet looked at them and immediately got embarrassed and walked away with her hands behind her back. The nurses assured me that we would be ringing the bell again when all our friends and family could join us.

Every night for the last almost 8 months Violet had to have a medication injected in the tubes as part of our getting ready for bed routine to keep blood from clotting in the tubes. The last night, we video taped Mommy doing the last dose of Heparin and we all said goodbye tubies. I explained to her that the next day we would go to the hospital to have the tubies taken out, and that now for the first time since February that she would be able to take a bubble bath in her tub. She looked a bit confused.  She did so good thru surgery. They took her back and by the time Charlie and I walked to the waiting room to check in, the doctor came out and told us she was done and that we could go see her after she woke up. When we got back to V she was just sitting in her bed with a bandaid where her tubies had been. She was able to take her first bath that night. It took her some time to get comfortable, the first few baths consisted of her just standing in the tub. She was too nervous to sit. But now she literally swims like a mermaid:)

So, there we were. Finished....normal.....whatever that means. I really struggled. I still felt very nervous, and sad, grieving for all we had been thru. Shocked. What does done mean?   Will we ever feel done? Can you be done if you are still getting scans every three months? What happens now? What does normal look like for us?   Will I ever not be afraid? What do I do without the doctors and nurses now? We aren't in treatment and we aren't in remission, so what are we? The first few weeks I feel like I was okay, I was so excited to invite everyone to come and watch Violet ring the bell, I delighted in watching her hair come back. I loved watching her play, and swim in the tub. But then something happened. I am still very much involved in keeping in touch with all of our friends at the hospital and several of the little ones that were done before us all the sudden had to start all over again......relapse. It happens. More than I want to know.   All of our friends and family were coming and saying, "aren't you soo happy, you are done" and I felt weird. I wasn't so happy, I was still sad, still TERRIFIED. For the last 9 months I've been focused on fighting this terrifying invisible monster off my only baby, I'm exhausted, and afraid that it will pop out again. No one can tell me it won't. Now that the fight is over and I have the time to absorb what we've been thru I'm horrified. We aren't done, I don't feel done. We have to face all this fear again in 3 months and then 3 months after that for Violets whole life. No one knows if her cancer will return, there is still so much unknown.   I felt like I was disappointing everyone because I wasn't elated. I am so beyond grateful that Violet is doing so well. But I can hardly be happy when I see my child cry several times a day because she can't walk or she trips over her own feet from weakness after the chemo that may never go away. We are one of the lucky ones, but we aren't unscathed. Violet has Physical therapy to try to help her sweet little legs, and I'm devastated to see all her scars and issues now.   It has left her weak on the left side of her body, she is covered in scars from surgeries, she still has days I can tell she feels sick from Chemo. I am grateful, I'm so grateful she is still here. I have seen families lose their babies to this monster. I know how blessed we are. I am so wrapped in guilt that I am letting everyone down for not just being able to focus on that. I am working thru all of it.

We invited everyone to come to watch Violet ring the bell. We had so much support thru Violets initial 16 hour surgery to remove her tumor and I was so moved to see most of all of those 30 people that sat with us return to watch Violet ring that bell. I walked into the hospital with Violet, she was dressed in a Rapunzel ballgown of her choosing.   We turned a corner and there they were, it took my breathe away, sooo much love. And now there was our new family as well, all of Violets nurses that had helped us thru this nightmare. The beautiful faces that took care of my baby, and me. I walked over to the bell and tried to start to thank everyone and as I looked out and saw everyone I broke down.   I cried. It was so overwhelming. I don't even remember what I said, but then Violet RANG THE BELL!!!! In fact before they took it away she ended up ringing it SIX times:) It was a BEAUTIFUL day, full of love for our brave girl. She was soo happy and definitely felt the love too.

Several days after Violet rang the bell my sweet Daddy called and woke me up, "I'm so sorry to have to tell you this, they found a brain tumor in me." I was DEVASTATED again. Not my Daddy too. He underwent his own brain surgery with all of us by his side. His tumor, thank goodness turned out to be noncancerous, but still definitely affected us all. The doctors say that Dad and Violets brain tumors are unrelated and just a fluke. Lucky us I guess. He was amazing and strong and is still recovering but doing well. Shortly after I knew Daddy was okay we went away to Tennessee just so we could unplug and unwind, reflect and celebrate life. My very dear girlfriend had offered us a free vaca in her STUNNING mountain cabin. She gave us gas money, and passes to a themepark in the area. I was and still am in awe of her generosity. We had the best time, and then several days in, I got the call that my grandfather passed. We came home early to be with family and to attend his funeral.   This year has been SOOO hard. I am having a hard time relaxing as it feels like every time I do something else happens. But we have absolutely had our blessings as well.

I have made it our mission to do everything we can to be advocates. This experience has changed me. I am a different person now. I want to do everything I can to help these kids, and to give back, we have been given so much and I want to pay all that forward in any way I can. Violet and I went and spoke to some classes at a local high school about pediatric cancer and after we spoke to them, the classes decided to do fundraising for pediatric cancer research and they have asked us to come back in a few weeks to address the WHOLE school. They are then hoping to challenge their rival high school to raise funds as well. This is what I am passionate about. We also participated in a local walk for pediatric cancer and we were soo moved by the experience. A lot of money was raised to help these kiddos. They did a special presentation for all the parents of children who are lost to this disease that made me sob, and then they had all the survivors come up and get a medal. Violet loved that attention, and it felt so good to call her a survivor.

We are trying to find our normal. Violet is over all doing pretty well.   We are addressing the issues she is having, and we are hopeful that she will get better.   She is laughing more, crying less, her energy level is coming back, and I'd say that sometimes she's even a maniac. She is sleeping thru the night again. She hardly ever looks for her tubies anymore. I am seeing a new doctor who helped me to understand that what I went thru with Violet being in that hospital room watching her struggle for weeks at a time was the biggest trauma a human psyche can stand. And that when it's prolonged like that your brain chemistry changes. Your brain can become conditioned to be afraid and sad, and you literally have to retrain, to relax, and find joy not fear. I will be continuing to see her. One of my very close fellow pediatric brain cancer moms once told me, this is all about finding a line between hope and fear. You have to find that balance everyday. Because if you fear too much you fall, and if you hope too much you can also fall.   You have to walk right down the middle and that is what I am trying to do. We are scheduled for another scan in December. I am already a nervous wreck. I am hoping that with every scan I will feel better and better, and learn to breathe thru it.

But what I keep coming back to is gratitude. Gratitude that my only baby, my every dream come true is still here, and she's amazing. She is strong, brave and beautiful. I kiss her face off daily, we dance often. We adventure constantly. I am soooo grateful for the people we have met, the love we have been shown, the generosity, the care and concern, the bonds we have formed. I can confidently say that there is NO way we would have made it thru this journey without you. ALL of you. Even the people who just smiled at me in the hallway at the hospital, it all helps, the donations when we didn't have groceries, the people who followed our journey, and read the blogs, the hugs, the phone calls, all of it matters. Never underestimate how much kindness can do for someone. It is EVERYTHING. So, thank you. I will continue to blog of our adventures and our updates. But, please know how very grateful I am, and that I'm trying to be happy and grateful. This is a journey, and I hope that that part of our lives is done. I have created a facebook page for Violet called Violetstrong where I try to post when I can almost everyday with pictures and updates. Please feel free to follow us there. It can be found at www.facebook.com/violetstrong2 just click the like button and you will get her updates in your newsfeed. Thank you so much.