I don't even know for sure where to start. First of all, we are doing alright. We got a new place, my amazing sister let us stay at her house for several weeks while we were homeless, which was amazing. So many kind friends brought food, and we made it thru. I was able to find us a MUCH smaller place, just up the road from our last apartment, with a much smaller rent payment. The landlady was very kind and was able to give us a good deal, and get us in very quickly. My family and Charlies best friend, and his son moved us in, and we spent a few days organizing, and finding places for everything, and purging anything we didn't NEED as there just wasn't room. It felt good to simplify. We trip over each other a lot in the new place, cause it's pretty tiny, but I like being in close quarters. There are no stairs that are a danger to V, and she is never out of my earshot or sight. I grew up in a small house and I think it makes for a nice bond when you can't get away from each other:) The new place is starting to feel like home.
We went back to the hospital for Violets fifth round. We were in for 14 days. EVERY single round I get such severe anxiety taking her in. I don't know how to explain it......but it is just another reality. We have seen so much, and know all to well, all the dangers. When we set foot in those doors, and return to our second home on the 12 floor I become a warrior mommy. I literally go into hyperdrive, I become hyper aware. I become a very devoted, hovering Mommy. I don't like to leave Violet even to go potty or shower. I watch her like a hawk. I educate myself on every med, every chemo, every side effect, what we need to be watching for, and all the dangers. But, its also nice to go back and see all our nurse friends and hospital friends. The nurses up there are truly some of the most amazing people I have ever met. I find that people who love your child become very dear to you as a parent, and to see the compassion and love from these young girls and men towards V during our darkest times makes me adore them. They have also become very close friends to me, as they are the only people I see for weeks at a time, and because we are there so much, for so long they know me well, and some of them just come by our room to hang out and chat, which saves my sanity many days. I find that I am very emotional about this being Violets last round, because the people at the hospital mean so much to us, and it feels weird that we may not seem them again, unless we come back and visit them, which we will. Just this last round as an example, there is a nurse up there who sees us walking the halls with V several times a day, she had never been our nurse but, every time she sees us in the hall she talks to V in a Daisy Duck voice because she knows V loves Disney. So, on one of our many daily walks in the halls, V got obsessed with looking behind double metal doors that were opened. So, there was a small opening between the door and the wall. The nurse saw V looking back there and she crouched down and said, "What are you looking for back there, sweet girl?" and Violet just looked at her and smiled, and the nurse said "there's nothing back there but dust bunnies." So, then every time we walked past those doors Violet would look for the "bunnies" When the nurse heard this she rushed down to her desk and printed off several pictures of bunnies to put behind the doors for Violet to find, and every time we walked there were more bunnies to find. Something that small made Violet soooo happy, and excited. One morning the nurse came in and hid "bunnies" in our room. We love the nurses, all of them. That is just one story of many of how they go above and beyond to try to help the kids thru the scary traumatizing experience of being in the hospital.
V got thru her fifth round fairly uneventfully. One of the many blessings thru this experience has been the bonds we have formed with other families. There is a family that we met during our second round. I was walking with Violet and a little boy and his mom came up to us and said "I was googling myself on the computer, and a picture of your baby came up, isn't that weird?" And he said "I printed it for you" It was a picture that a mutual friend had posted online of Violet in the hospital with her daughter. And I just said thank you, and was alarmed that anyone could just pull up pics of V, and thought I need to check into it later. We kept seeing this little man in the halls, so after passing him several times, I said "Hey, what's your name?" To which he said "William" and I said "William this is Violet" they said hello and we kept walking. From that point on every time we took a walk, and he was out and about, he would pop out and dance and smile and say HI VIOLET, which delighted V. She started to look for William everywhere, she looked up to him, and thought he was hilarious and cool. She looked for him everyday and they would play together in the teen room or the playroom. He was so patient with her being little, teaching her to play basketball or pool, taking walks with her. He went home first and Violet was sad, always looking for him and asking for him. He came back the next round and we weren't there, and all the nurses told us when we came back that he looked for her, and asked repeatedly when we would be returning. When we finally did come back he flew out of the teen room and grabbed her in his arms, so happy to see her again and she just held onto him so tight and they were inseperable once again. Playing together several times a day. The therapists that see the kids told me they try to match up several children of the same age and diagnosis when they can to form friendships, but they said they never would have thought to put sweet William and V together as he is, I believe 10, and she is not yet 2, but they have formed a bond that is undeniable. His mother and I became close after talking about our fears for our babies, and our hopes for them moving forward. The two families became close. One round we got discharged and didn't get to say goodbye to them before we left, and William went down to another floor to a hospital carnival and he won a BIG play tent/ball pit and instead of keeping it he told his parents he wanted to give it to V. So, he ran all the way upstairs to give it to her, and we were gone. So, he took it home, and waited for the next round for us to come back, and brought it up all the way back with him to give it to her. We were out on a walk and he had one of her therapists help him set it up in her room while we were out so he could surprise her when we got back. He is such a mature, loving little man who looks out for her constantly, and worries over her. The nurses see the bond that these two share and decided this last round to put them in rooms beside each other. William told us "if they let V be beside me I won't cry or scream when they give me shots because I don't want her to be scared." This last round V had some days were she was in a lot of pain and when he found out he told us "it's my mission to make her smile and feel better" he had his dad take him down to the gift shop to buy her suckers and balloons that he would bring into her to cheer her up. This last round was his last round, and his mother and family and I were in the toy room feeling elated watching him come back from receiving his last dose. We were cheering and beaming so excited and happy for him, and he came back kinda of sad and I said "what's wrong, this is great, LAST CHEMO BUDDY, YAY!!!!" And he looked at me with tears in his eyes and said "harder than fighting cancer is the idea of me having to leave my baby V up here in the hospital with out me" I almost fell on the floor. I adore this child and his family. He has a large family and amazing parents. They never leave his side. All of the children are very loving and kind, mannerly and funny. On July 3rd just hours after we were all playing and partying in the toyroom Williams right eye started to swell and by the next day it was determined that he was fighting a severe infection, and he went thru several scans, surgeries and was eventually moved to ICU, he is literally fighting for his life right now. He has been in very serious condition for some time now. We ask that all of our supporters please send love, positive energy, hugs, prayers, whatever you believe in, to help this AMAZING little man and his adoring, amazing family. This disease is DISGUSTING and so scary and no family should have to live thru this.
I think the relationship with Violet and William is incredible and moving to so many. We are horrified at the thought of him being in ICU in serious condition. I've lost many nights sleep worrying about him and his family. It gives me a whole new understanding of being on the other side of this, where you all must be. Wanting to help, worrying, wanting to do anything to take it away. Its bizzare to be on both sides of this at the same time.
I have ALWAYS adored children, it's been my lifes work and passion to help children. Going into the hospital I always feel like my heart will literally BREAK when I walk the halls and see all the little ones behind the doors, fighting for their lives, their bald little heads and smiles, so brave, all of them with a story and a family. Being in the hospital for weeks at a time I literally have a melt down everytime just emotionally it gets to be soo heavy and desperate. I have fallen in love with so many of these kiddos, and it's consuming me to see them struggle. We have had three friends relapse this last month. Two friends go to ICU, one undergoing a bone marrow transplant, which is so scary and intense, and one of the little ones who is just a few weeks older than V passed away from her disease just last week. There are days where literally I can't focus from grief and fear. One day last week I took a shower and when I got out I realized that I hadn't shampooed my hair, but did condition it and I had only shaved one leg, I am literally that crazy right now. When you see little ones come in and they look healthy and they just want to be kids, and then within hours they are in their rooms sick and miserable. It's heartbreaking and horrifying. It makes everything in our lives look like a threat. When V is in the hospital and her counts are low and she has no immune system I am so tense the WHOLE time. This last round she wanted to color and she dropped a crayon on the floor and then picked it up and put it by her mouth and I panicked a bit......there are germs on the floor, those germs could go in her mouth and be the reason she gets an infection, is that going to send us to ICU???? It's awful, I think part of the anxiety also comes from the sleep deprivation that happens in the hospital. Because I find that after a nap and a good meal I feel better, and realize once again that I can't keep her in a bubble, so I get her up and I chase her down the hall again, laughing and trying to catch her. One of my dear friends who is also a "cancer mommy" told me not to become a dweller, meaning don't let this consume your life, LIVE, let V LIVE. Run down the halls, get in trouble in the hospital for having too much fun when you can, and WE DO!!! I'm so grateful for our support and families. My mom and sister have always sacrificed there weekends to come down and sit with V so I can get away and sleep and eat, and recharge a bit. Without them, and you all, I KNOW I couldn't do this. You all reading this, everyone of you have helped us thru, your support, in ways you can't even imagine just by being interested in our story.
Violet has at least another week at home before we go back again for her (fingers crossed) last round. We are packing as much fun as we can into everyday. Tonight we took a walk and V wanted to stop and look at every bug, and I cherish that. I see so many parents that can't enjoy their kids, they hurry them along. It was amazing to watch V be delighted with every bug on the sidewalk tonight. Just squat down with her, and be amazed too. She's such an awesome kiddo, and I adore every minute with her, even her coming into her two tantrums.
To end on a high note, I will share that we received another amazing gift from a dear friend who I will allow to remain nameless, but this person gifted us a new family member. Violet chose an ADORABLE new friend who she formally named "Pincess Minnie Biolet Murphy" She is a 12 week old Zuchon pup. She has been the joy in Violets life everyday since we adopted her. Violet loves to walk her, and play with her, and I think Violets favorite thing to do is yell at Minnie when she gets rowdy she loves to yell "Minnie get your TOYS!!" Minnie is a mixed breed, who will be 10 pounds full grown and she is so fun and delicious. We are so grateful to have her. My parents are puppy sitting her for us while we are inpatient but while we are in Violet facetimes on the phone with her pup everyday. She was so excited to tell all her nurses allll about her new baby Minnie. And now that we are home for a few weeks she is here with us, and Violet gets up in the morning and can't wait to get Minnie up.
Hope everyone is well, and that you know how much we love and appreciate all of you, and that we can't wait to pay all this kindness and love forward. lots of love
