ROCKSTARJolie vs.Leukemia FundDrive
I'm very humbled and grateful for all your support over all this time. Your donations have carried Melanie
and Jolie through the last 20 months, allowing mother and child to be together as much as necessary and possible.
Now we're in the home stretch. Jolie spent Thanksgiving in the hospital, but it will be her last one on chemo. She will be turning 9 in two weeks, and it will be her last birthday scheduled around her clinic. And this Christmas will be the last one with an access port. Sometime next summer, she'll be done and normal life can resume.
The problem is that now her little body is worn out from being sick for so long. She's been in the hospital three times since school started with infections and complications from having been on chemo for so damn long. Hopefully she won't be hospitalized with such frequency in the months ahead, but your support continues to be so important to them.
Thank you so much for your donations over the past two years. It is so appreciated, but there's still a ways to go and we need your help. I'm going to bump up the goal a little bit to carry them through the next eight months. Melanie has a steady, stable job and works as much as she can, but has had to cut her hours and her income back drastically since Jolie got sick and every little emergency is a calamity. We'll continue to keep you updated on her progress, and I promise that when the day comes and she gets to ring that bell in the clinic signifying her last treatment, you will all be there with us.
Thank you deeply,
On March 15, 2015 Jolie went to the emergency room with a terrible stomach ache and a fever. We were afraid it was her appendix, but it was so much worse and nothing has been the same.
Living with leukemia has changed us so much. It has been months of fear and painful treatments. It has been watching this innocent little sparrow trade her dreams of rock stars and unicorns for an "adult mind". It has taken more than her innocence. In May, a simple and minor accident at school meant the loss of her left hand ring finger, amputated at the top knuckle, because her little body has been so depleted from the year and months of chemo and steroids that her poor finger couldn't withstand a minor trauma.
Her hair has grown back, but it is still all over her pillow when she wakes up.
She has entered the maintenance phase of treatment, which should be the easiest, and it is, but all these months have taken their toll on her. We're back in the hospital now, no real idea for how long, because her liver and her pancreatic functions are poor, her bone marrow isn't cooperating, her blood won't clot, her immune system is shot.
We're hoping for the best, afraid for the worst. But she is done. No more bravado, no more stiff upper lip. She's a scared little girl and she isn't so sure anymore. When she's awake, she's afraid and anxious. She needs me by her side. She needs her mom.
I should have worked 9 hours yesterday but I didn't and without a second thought. I should have worked today too. I should work tomorrow. But I'm not going to leave her side. Your generosity over the last year and half has meant that I was able to take care of my child when she needed me. It held us through the hardest 18 months a parent can imagine. Since we let this campaign trail off, I've been doing my very best as a single mom to keep it together and I've been doing it, but a missed day of work is hard to recover from. Missing a week means choosing the power bill over groceries. More than that is hard to recover from. We don't get food stamps or assistance because we live on the edge of the poverty line. Too much to get help, not enough to survive.
I am grateful beyond telling that you continue to buouy us along. The communities that have come together out of love for our little Sparrow are divers and humbling. Friends and family and strangers. Audiophiles and punk rockers, lovers of music and art, drama club kids, caberet, tattooers, artists, musicians, business people. I love that so much of our support comes from the fringes. We're the weirdos, and we come together like nobody's business.
Until the day I die, I will be grateful beyond telling. This girl is the very best of me. She's everything. I need her like the air in my lungs. I need to be beside her. For as long as I have her, I have to be there.
Sweet Jolie was born and she hit the ground running. From the beginning, she was an unstoppable force of nature. Always a quirky child, sweet and thoughtful, loving and compassionate, she grew into her own person, and I'm telling you the world has never seen the like. She had a natural gift for math and science, and developed an uncanny interest in time travel. She wanted to learn magic and card tricks and seemed to have a bright future ahead of her as a grifter.
And then one day she discovered rock and roll. More accurately, she discovered Kiss and other bands she could listen to when she wasn't listening to Kiss. She amassed a record collection that would make a hipster cry. Dude, she owns Music from the Elder. She waited three long years to be old enough to go to Girls Rock summer camp. She enrolled and was accepted. She was going to be a drummer. She was going to write all her own songs.
But she started getting tired, really tired. Those long arms and legs that were going to serve her so well as a drummer started to ache all the time. Her belly hurt. One night it hurt so bad, her mom and dad took her to the emergency room thinking it was her appendix.
The doctors drew blood to look for infection, but they found something else even more alarming. The hematologist-oncologist was called in to give his opinion.
Her hemoglobin was so low, they were surprised she could sit up and talk. Somehow her body had adapted to running on about a quarter of the blood it needed to survive. She was admitted to the ICU to be given transfusion after transfusion. Once she was strong enough, a bone marrow biopsy confirmed the diagnosis. This beautiful little rock and roll star has cancer.
Her road ahead is long and winding and not very well lit. Her mom and dad have no idea what is in store for them. Cancer takes a devastating toll on a family, and financially, while not the smallest part of this, is at least the easiest to address.
We're asking for donations for Jolie and her family to help them in the months and years to come as they support Jolie in her war. Her parents need to be there for her, not worrying about missing work and paying bills. This is one small thing we can do for this very small warrior. We owe it to the future of rock and roll.
I can't begin to thank you all enough for being so damn good to us. I don't think I've been this scared for her since her diagnosis sunk in. We'd become complacent. It had become routine. This reminder of just how far we still have to go, and then further yet once we get there... it's chilling. I should have worked 9 hours yesterday and 7 today and I didn't. I was with her in the hospital instead, snuggled up and holding her while she cried, while they ran their tests. I was there to talk to the doctors and the nurses and tease the answers from their hospital speak. I could be here fully. Our rent, our bills, our groceries, our survival.... it's not on my mind right now. To let you know, I'm a single mom and we get no help from anywhere, not so much as foodstamps because I work and we fall in that mystical area where I earn to much for assistance but not enough to survive. One missed day is devastating. A missed week and we don't eat to keep the lights on. This means more than you will ever ever know.
Thinking of you today, rockstar princess ! I hope this new year brings new discoveries of music and happiness. From one survivor to another - rock on!!
***when she survives.
Man, thank you all so much. The love continues to pour in every day, and it is simply an amazing thing. Thursday night Jolie had her last dose of steroids, then Friday she went in for her lumbar puncture and bone marrow biopsy. The news sounds so good: unofficially (we haven't heard officially from the doctor yet), she's in remission. Zero detectable leukemia cells (to the naked eye) in her bone marrow. But as lovely as that sounds, Friday she starts a new round of chemo, a month of Fridays of being sedated and chemo delivered directly to her spine. There will be a few weeks here and there where she will undergo interim maintenance, and will just have chemo delivered by pill at home for a couple weeks at a time. Then there will be week where she's on all those horrible drugs she just got off of. It's going to be a long six months, and we don't even know entirely what is in store yet. And then two years of maintenance. And then in 10, 15, 20 years we will find out what the long term effects of her cure will be. All I want is to be able to take care of her this summer without constant stress over money. I want you to know that for starters, I've made sure that every last bit of debt we have is paid off, every bill that can be paid up in advance is, every bit of fat has been trimmed. I've started a savings account for her, and soon I'll figure out something smart to do with the money, because when she is a young adult getting started on her own, she doesn't deserve to be screwed by this one lousy summer. It's bad enough that a precious summer from her childhood is being stolen away from her, but to survive this only to have to struggle just when her life is getting started is just too unfair. We're doing this for her. It's all for her. She's far too special of a little person to have to struggle, now or later in life. Thank you for doing this, thank you all for caring about us.
We've been really busy putting the benefit together, and Jolie has been busy eating and being mean to everyone. It's not been a good week, really, but it's been awesome in a lot of ways. Her hair is all but gone and it is really hurting her badly. But tomorrow is the big day. We should find out if phase one of her treatment worked, which means coming off the steroids and hopefully most of the two handfuls of pills she takes every day. It'll also mean trying to figure out how to keep the weight on a naturally very skinny child. It also means the beginning of the rest of our lives, not to sound too cliche. We are taking several mighty leaps of faith, and our friends and even complete strangers have done so much to keep a mother with her child when they need each other the most. If you are within driving distance, please come. I hope to put up some video on the Facebook page as soon as I can. I can't thank you all enough. I am amazed and humbled and lifted up and bigger than a mountain.
So this week we learned that 1. I am brilliant, 2. there's a place for smart, creative, quirky kids, and it's called drama club, 3. the unrelenting love of friends and strangers is bigger than any disease, and it has a kick ass soundtrack. https://www.facebook.com/events/1592558414320600/
Yesterday I talked to my boss and we agreed to cut my hours back at work. This is terrifying, but that is why we are doing this. I'll still be working full time, but I'll be home with her two more afternoons a week. The poor kid is miserable. She's so bloated from the chemo and steroids and in so much pain that all she wants to do is lie on the couch and hug something hard. She and I sat and had a long talk last night. She agreed that she had to do whatever it took on her end to ensure an EFS. Those beautiful letters: Event Free Survival. Our goal is to take an aggressive stance against her leukemia and fight it with healthy choices. The less aggressive treatments she needs in the next phase of treatment the greater the likelihood that she will not have later life conditions like, you know, more cancer. Thank you for helping me reach the point where I can do this for us. It means he world.
She had her second clinic this past Friday, and while it was easier with no sedation or lumbar puncture, she's starting to feel the effects of the chemo. She's weak and her little body hurts. Walking is difficult, so I carry her most everywhere. She's tired and sleeps a lot, and is so self aware that she will nap before trying to expend any energy. By the end of last week, she was her silly self and I was optimistic that she was starting to feel better, and I have hopes that she will start to feel better with a little distance from her treatment, but I can see now that this is only going to get worse from here. My rose-colored glasses are off. I've been working as much as possible while my mom is here, but I don't see any other option but to start cutting my hours back at work. She needs me, and the feeling is mutual.
We've been home since Tuesday, and settling in has been nice. Grandma and Aunt Tammy are here to help out, and they've spent their spare time washing every thing they can get their hands on. She's grumpy, but never mean. She had her first clinic yesterday, and it was a hard morning for everyone, especially her parents. She had to be sedated for a lumbar puncture so that chemo could be delivered directly to her spine, then a little nap while chemo and platelets were delivered to her port. Her hemoglobin was 11.5! This means that either she is making good blood or at least holding on to the transfusions she's been given. Her ANC, though, is still too low for visitors and it looks like Palm Sunday services are out. Another clinic next Friday will hopefully have her ANC high enough to attend Easter services. And hopefully she'll be strong enough for our big trip to the salon next week to get our hair dyed.
Today we go home. They've topped off her blood and platelets, she's being unhooked from all of her tubes and wires, the port will be de-needled, and we will be on our way. It's pretty scary. It's all on us now, and if we mess up we're in the hospital for the duration. We'll have a Grandma Rose with us for a month, then we'll have to figure out what to do while mom and dad work. For the next 6 months it will be either hire a nurse/nanny or one of us will have to quit working until she can go back to school. We've been waiting and waiting for Spring to get here, and now all we can look forward to is the end of summer when she can somewhat resume a normal life again. Your support is appreciated more than words can say.
Tomorrow looks like it's going to be the big day. We get to go home and find out just how prepared we are not. I have an extremely complicated medication schedule, weekly clinics (every other one involving sedation for bone marrow or a lumbar tap), and a 'roided up kid with an appetite for Doritos that is frankly alarming. How many bags of Doritos can one sick little 50 lb girl eat??? The logistics are daunting. This helps so much. This funding is more than just bills paid, fuel for the car, and bags and bags of Doritos. It's peace of mind, and that is priceless.
Thank you all so much for donating and continuing to hold us up in your thoughts and prayers. I can't express the relief we feel every time we open this page. Just being able to be present for Jolie without worry means the world. Not just for us, but for her too. She knows that missed work means stress for mom and dad and this is allowing us to let go of one worry so that we concentrate on what matters.
If you would like to follow her journey: https://www.facebook.com/joliesarmy?fref=nf