Doing Old Lady Things

Once again it is scan day. We are at Dallas instead of New York which is nice for a couple of reasons. One, being home is way better than being across the country. Two, there is apocalyptic snow storm heading right for the hospital and I’m not about being stuck in all that. Though, to be honest, I would’ve loved to be able to suit KA up and throw her in a fresh snow drift. Arms flailing wildly as she leaves a perfect KA cookie shape in the snow. I know it doesn’t work that way, but dreams you guys…dreams.

We didn’t get to get scan in NY because she popped positive for flu A. She never did get any symptoms so it was kinda like flu F. Not that I wanted her to get sick but there was a big to do and we got sent home in cancer germ shame for nothing. Of course I didn’t want to get anyone sick so I’m not really upset about that, but if you’ve ever walked by a cancer kid while your kid coughs or sneezes its like…well I don’t know how to describe it, but its bad m’kay?

She did get the vaccine which is really all that matters at this point. We can scan at home, no big deal. It just gives me a chance to have a chatty chat with Dr. Watt. I swear I love that woman in a totally doctor/crazy mom of patient appropriate way. She is truly an amazing woman. We talked about taking her port out if her scans are good this time. Its crazy how superstitious not only she and the other doctors are, but myself as well. I will never ring a bell, or throw a party. Not because I don’t want to celebrate those victories but because what if I’m tempting fate? I know it sounds so silly, but its a real thing. I know in my heart that if she does relapse that it’ll be my fault for celebrating before I should have. I’m convinced there is a certain amount of PTSD that goes along with all of this, but more on that another day.

I’m really nervous this scan set. Life has been so normal for the Poots. She’s in school, swim classes, birthday parties, and afternoons at the park. Her hair is growing back and she is so damn proud of it. She love to put little bows and clips in her hair and practically shines when someone gushes over her hair. She keeps telling me that she wants in long like mine to braid it every day. I promised to braid it anytime she asked. That might backfire when she’s 31 and wants me too, but I figure I’ll be 71 by then and how can you seriously ask a 71 year old woman to braid your hair?!?!

Speaking of old ladies… Nessa is visiting this week. Not that she’s an old lady but she does crochet…or knit…crap I can never remember which! She gets so mad at me too, it’s kinda cute. I digress… Anyways, she has been making me a blanket whiles she’s been here and it’s looking awesome. Blues, yellows, and cream. What is funny though, is everywhere we go, she settles in and starts crocheting (?) and I’m right beside her eating sunflower seeds and we are just jabbering like little old ladies. It’s got to be quite the sight. It’s nice to have her here with us and see the how our lives really are. One of the things I’m so glad she has seen is how truly loved KA is here. I brag about her doctors, nurses, and everyone here at the hospital…but for Nessa to really see what I mean is amazing. These people here really love her so much. She’s like a little celebrity. One of her nurses waited an hour and a half after her shift, fourth in a row I might add,  to come see her in radiology (shout out Chelsea). One of the reasons is because of Katie-Anne herself of course. But if I’m completely honest, I’d like to think I have a part in it too. I think that a lot of parents get wrapped up in everything that’s going on that they forget about the people that are there taking care of them and their children. They are not our punching bags. They are human and they have feelings. When a parent is difficult in general to deal with, it takes its toll. In no way am I saying to not advocate for your child or stand up for your rights, but I think we all know those people that are just difficult in general and usually bring a negative environment wherever they go. I have seen parents screaming at nurses to get into their children’s room while they facebooked their child’s  code blue. I have seen those same parent berate a nurse because she was 10 minutes late getting Tylenol to a room. I get so very angry because they have no idea the pressure these amazing people are under. I get it, not every nurse is an angel. Though if you are treating them with respect and kindness, you’ll get it returned generally.  I don’t even know what I’m trying to say. It just angers me to see people act this way.

This month has seen a lot of sad news for my cancer family. A friend of mine lost her son this week. Another family is struggling to find an answer. Kids relapsing,  losing their battles, and yet… some finding joy and laughter again after so long without it. I almost forget some days that KA is still in danger on this beast called neuroblastoma…almost. It’s never far from my mind, as much as I’d like to forget. Maybe one day I’ll forget her tears rolling down her face as the gas mask goes on as she’s being sedated. Maybe one day I’ll forget watching her struggle to keep up with the other kids running. Maybe one day I’ll forget the hours of sitting like an old lady waiting to get called back to recovery.

One day, maybe, I’ll forget what cancer has done to our lives as I sit down and braid my 31 year old daughter’s hair. I wont care that I’m 71, because I promised to always braid her hair whenever she asks.. and that a promise I intent to keep, no matter when cancer happens.

So what does that mean?

I haven’t posted in awhile. I guess with Facebook and those short posts, I didn’t have a long rambling post to make. Life has been crazy. With Katie-Anne, work, and home…I haven’t felt that I could breathe in a very long time. That’s really no surprise though to those that know me in person, or are going through this journey that is cancer. At this very moment I am sitting on the couch at the Ronald McDonald House in New York. First, this is seriously the most comfortable couch in the world. It’s huge and soft and a comforting brown color that immediately makes me think of home. I love this couch. Second, we had mIBG scans and bone marrows this morning. First case of the day and we are already done and back at the house. She had a little trouble and her oxygen went way down because she started coughing on the table during sedation. They had to wake her up a little then put her back to sleep. She just has a lot of fluid that can’t be peed out. She’s had the equivalent of about a half gallon of liquid the last week shot into her veins. So she’s very wet and they had to suction her out. Katie-Anne got mad at them because she was awake, I wasn’t there, and they were trying to get her to cough by softly pounding her back. She was maaaaaaaaad.

After she was awake and not spitting pea soup at everyone, they paged Dr. Kushner to talk to me with preliminary results. Things on the mIBG looked the same, if not a little faded. It’s hard for them to tell exactly with them side by side from her previous scans because her last scans were taken at Dallas Children’s so the machines are different, but to him and Dr. Modak, they look a little better with no new spots.

So what does that mean?

It means that Katie-Anne will never be NED. She will always have those three spots of mIBG avid spots. It means that nothing new has grown. It means that she is “no evidence of active disease”. This is pending PET scans that we will have in Dallas.

So what does that mean?

It means that we are going to start the vaccine trial at MSKCC. It means that we are done with frontline treatment and going on to maintenance. It means we will no longer be treating her cancer (or what remains of it) with chemo, antibody, radiation, or anything else that is considered frontline treatment. She is done. Dr. Kushner made a very good point when I brought up how the very thought of this scares me. He said that we can’t give her chemo or those other treatments for the rest of her life. At some point, we have to go onto maintenance. The time is now. The time is now to trust that the remaining disease is matured and not active. It is time to trust that she will not relapse. It is time to give it back to her body to do the fighting on it’s own with the vaccine.

The vaccine in this study targets three markers on neuroblastoma cells. The aim of the vaccine is to trigger a response of the immune system against neuroblastoma by causing the patient’s body to make antibodies against these markers which would, in turn, cause white blood cells to find and attack the cancer cells (mskcc.org).

Kushner told us that it has been two years we have been fighting and if she were going to have new growth, chances are it would have already happened. In effect, she would have already relapsed. But that we also can’t be too careful. This disease relapses so easily, and we need to be extra cautious.

So what does that mean?

It means that she gets to live a normal life with no more chemo, treatment (other than shots and a few medicines), and she gets to hopefully forget all about all of this. It means that I will spend every moment worrying if her neuroblastoma has grown back. It means that every bump, pain, and fever will send me into a panic. It means that her hair will grow back and I will forever be playing with it. It means that she has a second chance at her life without cancer.

Now starts a new chapter. Weekly flights to New York for the shot for a few weeks and then tapering down. There will be scans every 8 weeks to check for new growth (relapse). We will be starting a new medicine. It’ll be a new life for her. I’m more scared now that I have ever been and I need this to be true. I need her.

Tonight Times Square is going gold for pediatric cancer. We will be there with all our new friends and fellow cancer kids. I’ll be holding her up, looking at all the boards shining gold. I will be crying tears of both pure joy, and pure fear. And when she asks me, “Why are you crying Mama?” I’ll be able to tell her that it means that we are done.

It means there are no more buggies.

 

 

 

 

 

 

 

 

 

The Big Apple

When I found out that we were finally going to New York, my thoughts were those of relief. While we love Dr. Watt and recommend her to anyone, we knew that Children’s Hospital couldn’t really help her much more. It was time to head to Dr. Kushner at Sloan Kettering. I had an idea of who Kushner was from all of the Facebook groups I’m a part of that are dedicated to Neuroblastoma. I had heard he was a bit distracted, but brilliant, with an odd sense of humor. I hope he had humor, as you all know that is how we get through our lives. Or at least try.

We got to New York easily. Katie-Anne was perfect on the plane and had a blast. She watched movies the whole way. The Uber ride here was good. I had never done Uber and now I’m a huge fan. It’s so much easier than I thought. He took us right to the Ronald McDonald House. We got here about 11pm. Check in was easy. The room is pretty nice. plain but nice. The beds are little better than prison beds (not that I’ve ever been in prison but you know what I mean). I’ve since gotten a mattress pad for the bed and I’m hoping it helps tonight. The bathroom is clean, as is the room. The walls are pretty thin and our next door neighbor is fond of their snooze on their phone, but it doesn’t really bother me.

Going to MSK was a whole new world, and not in the Aladdin kind of way. One, it’s New York so it’s crazy busy. Two, it’s pretty big and you really have to pay attention to what side you go to etc, or you’ll get lost easily. Three, the playroom on the 9th floor is huge, and overwhelming. At least to me it was. I’ve been in the childhood cancer world for almost two years now. Two years too long. But as I looked around me in that playroom/waiting room, I was just overcome. How can anyone say childhood cancer is rare? Neuroblastoma is rare? I was literally surround by children there to see the oncology team at MSK. Dozens…there were dozens. I couldn’t help but get a little teary, and thats not really me. Katie-Anne wanted to play with the kids so bad, but the two groups of kids near her were both from other countries. One was from Romania I think, the other from Japan I think. I don’t think the kids spoke English and she wanted to interact so badly. I asked her to make me lunch (she was in a play kitchen) and she brightened up and went to playing. We didn’t wait long, not considering. We went into an exam room with Kushner, his PA, and a nurse. Let me just say now that Kushner is everything I hoped he would be. I don’t know if he’s going to get my sense of humor, but I really do think he is going to help Katie-Anne beat this. To me…he looks like Bill Nye. He’s tall and kinda lanky and a little disheveled. He’s everything you want to see in a research doctor. The thing is though, he asked to see a picture of Katie-Anne before she was diagnosed,”so I can see her like you see her.” He asked about all of us. He asked me some medical questions and I even peaked an interest in something I told him, which made me feel a little intelligent *insert cheesy grin here*. I just like that you can tell that not only is he a researcher, he cares about these kids…cares about Katie-Anne.

The plan for right now (Kushner is known for changing his mind) is to do two rounds of 3f8 and then start her on vaccine. To say that I’m excited to hear the words vaccine is an understatement. There were days that I wasn’t sure we’d even get to talk about it. That means he considers her disease mature, which is what Dr. Watt and team believe as well. The only snafu is if she is HAHA (Human Anti-Human Antibody) positive. It’s an immunity to the antibody treatment and we’ll have to change tactics a little if she is. We leave here Tuesday and fly back on Sunday to start 3f8. Whew what a whirlwind (I hate this word now btw).

We’ve met a few families while here, one especially has been super nice to us. Their son is just a few days older than Pooters and is such a sweet boy and is on vaccine and doing well. They’ve been so nice to us and Katie-Anne. She has herself a little boyfriend in the older boy, he’s five, and she is smitten. She’s having a blast up here. This is one big adventure for her and kind of a mini vacation for me. We finally got the remodel at work done for the most part and now it’s just finishing touches so it was very much needed that I got to get away for a few days.

We’ve got to go to the American museum of  Science and Nature yesterday and the beach today with Angie. She drove up from CT and took us and Katie-Anne had a blast. I did too but I forgot how much I hated sand in my butt crack. In fact, I’m going to shower and head to bed. I’m sure I’ll write more about our weekend later, but I’m going to relax while I can. We have bone marrows tomorrow so we’ll see how it goes with it being four points instead of two. Wish us luck. You know we always need it when cancer happens.

 

 

 

 

 

 

 

 

 

Everyone should have a Mimi

In our lives we can find ourselves alone. I know I often do. That isn’t to say that I don’t have friends or family. But sometimes…sometimes you find that special person in your life that makes you a better person.

I used to date a guy named Ryan. When I moved to Texas and took a job with Famous Footwear, he was another store manger in my district. He had a good older friend named John. He also worked for the company and even though he was older, he and Ryan were close. John had a wife named Barb and we would all often go out to dinner. Ryan and I broke up after about five years, as couples do, but instead of stopping being my friend, Barb and John helped me. John and Barb parted ways some time after that. I always joke that I got her in the divorce. Through the years, Barb and I’s relationship shifted slowly. It went from friends, to more of a mother/daughter relationship. She quite a bit older, like 127 I think (lol sorry), and it was a natural shift. She had never had kids of her own and I didn’t have a mother. I became hers… and she became mine.

In fact over the years, she has become so much more to me than just a mother. She decided to move back home to California and I was so sad. She said the only way she’d ever come back is if I had a baby. So I had Pooters. I mean, ask and ye shall receive right? When she flew home that first time from California to Dallas, she saw me all round and pregnant and she started to cry. That is what I needed. Someone just mine to love me. Katie-Anne was her light and her joy. When I got pregnant with Cooper, I waited to tell her until she was flying home from a visit with her family in California and I was picking her up from the airport. I had Katie-Anne run across the baggage claim with the sonogram in her hands. When she realized what it was, she cried again. Just mine.

Today, I was able to get off a little early. I called her and asked if I could come take a nap at her house and have Celina just drop the kids off there. I was so bone tired. She, of course, said yes. I had a sandwich, had a drink, and she turned down her bed and turned on the fan for me. She kept the kids quiet when they got there and I slept for a few hours..safe and comfy in her bed. When I woke, she had dinner ready for me. She takes care of me when I’m at my lowest. She still loves me when I snap at her because I’m tired or sick or stressed. She helps at the drop of a hat. She will come over if I’m working late, need help with the laundry, or just to help clean. She sits with Katie-Anne in the hospital during the days while we work. This weekend she is coming to help go through the house to find stuff for Celina’s yard sale for Pooters. She is always here for me. She loves me for me.

She yells at me for always wearing dark clothes.

She loves to give play by plays of everything she has done at the house when she’s been there. I always laugh because she could rearrange the whole house and I just don’t care, but she wants me to know just in case.

She conservative, very… and I am not lol.

She sneaks the kids candy behind my back and then looks so sheepish when she’s caught, then tries to act like she doesn’t care that she’s been ousted.

My disorganization at my house drives her crazy. She is always trying to find little ways to rearrange my cabinets so they are more neat so my life is easier.

She does the kids clothes for me at her house and then brings them here all on hangers.

She makes my bed every time she is hear. She would never be able to sneak in the house, I’d always know she was here because my bed is made lol.

She has made lunch for me to stop and get on my way to work.

She does so much for me.

I just need her to know how much I love her. You ask how I do what I do…it’s because I have her. Mimi. She is my rock, my friend, my mother. Please take a moment to give her some love, because she deserves it all. She gives me a place to be grumpy tired me, to heal and rest, and most of all to be loved. You need someone like Mimi when cancer happens.

The Personal Side of Things

So when I asked what people would like to me to write about, a lot of people wanted to know personal things. There were lot of questions about me. Me! I know this is my blog, but it kind of surprised me that people wanted to know about me and how I deal and do things. I don’t consider myself any kind of amazing that people often tell me I am. I’m just me. God that sounds so…so stupid lol.  I’ll do the best to answer the questions though and try not to be self conscious.

One question that stood out was why do I still work instead of quitting my job and stay at home taking what government assistance I could instead of acruing all of the medical expenses that comes with all of this. Well I guess it boils down to a few reasons. The first is that the doctor that was there that first night (Dr. Wickiser) told us that the most important thing was that we try and keep her life as normal as possible. That if our lives stopped and centered completely around Katie-Anne and gave into everything she asked for that when all of this was done, we’d have a tiny terrorist on our hands. Of course everyday I want to stay home with her and Cooper. I’m their mother. But the truth is, is that I’m also myself. I’m selfish. I wanted to keep my job and try to be/stay successful. I would give my life for her in a heart beat. However, in order to give the best of me…I had to stay me. That meant going to work and doing the very best I could there. One of the things I like most about my job is not selling people pens and pencils, though I do love colored pens lol. What gives me joy in my work is maybe helping the people I work with be better in some way. By no means am I a perfect store manager. In fact I have been told many times over the years my faults, but in the end, I think it matters that I care and I try my best. I see all these people come through my store, and I know in my heart, that they are not going to be retail for life. It takes a special person to be retail. You see, as a store manager in retail, you make good money. You go from store to store, year by year, and you make more and more. You get trapped into staying because you can’t make the same money elsewhere. With a bachelors in geology, I would make half of what I do in that field to start with. I’m not saying you can’t grow, but it’s so hard to find work in your actual field these days. You get trapped in retail. I still have dreams of being a planetary geologist but I need a masters to do anything with that. So here I am going to work everyday not changing lives by selling paper and glue. What I do though is help people learn how to deal with difficult situations. I help people learn to deal with stress or learn how to interview. I like that part of my job, the people developing part. I’m not saving the world, but I am helping in some small way those I touch…even if it’s how they don’t want to be. So thats one reason I work, to stay who I am, because it’s part of my identity. Another reason is because I want her to have the very best health care I can give her. I didn’t want to compromise on her care in anyway and in order to do that, I had to keep my insurance and the means to cover the money part of it. To be honest, I don’t know how it all works with government help, I never looked into it. I just assumed that this was the best way for her, so thats how I did it. The third reason is that when this is all over, I didn’t want to have a gap in my growth in work so that I could give her and Cooper everything I never had. I often get made fun of because I take such pleasure in how they dress. I have been complimented so many times on how the kids are dressed. I love this. I was teased mercilessly growing up about how I dressed, and I don’t want that to ever happen to my kids. I want to give them everything I can. Including a college education without loans. I want to take us on vacations and show them the world, or at least The Grand Canyon..and Pompeii…mostly Pompeii. I come home every night and I hug and play with my children, cook dinner, but I work long stressful hours, and I need time to myself too. I half feel selfish and half feel that I -have- to give myself that time to wind down or else I’ll go crazy. My day starts at 4:40am. I don’t get home most days until 6pm, and some days, like the next two, until 10pm. I work hard, and I do feel guilty, but I need to work.

I feel like I’m rambling …

The reason I can juggle so much is because I can make my own schedule. I am required to work 10 hour days and close at least one night a week. However I write my schedule, my days, so that I can still get things done. I usually take Wednesdays off so that I can take Katie-Anne to clinic. When I can, I close of Thursdays so I can take her to swim class. I usually take Sundays off so I have a full day with both kids, but will usually try and take Cooper somewhere alone during the week for just us time. I close Saturday nights because daddy can take care of the kids and it’s my way of giving back to my team so they can have Saturday nights off to have fun. I have the best team, that is really how I can do a lot of what I do. They give me the flexibility to be late or leave early if I need to. They will switch days off at a moment’s notice, so I feel like they deserve Saturday night at least. Also, Aaron is a great father. He does most whatever I ask of him and that gives me the time to do all I have to do. In return he goes fishing and hunting as well as time whenever I can on the weekends. Its a give and take. I try to keep life as normal as I can for all of us. The one that suffers the most is Cooper I think. He is often shuffled between family and friends weekends that we are admitted. He is loved by everyone, thats not it, but he is often second to the needs of Katie-Anne’s treatments and I hate that, but its the reality. I really try to take him places just us so that I can show him attention by himself, but it’s so hard. He is well adjusted and doesn’t have behavior issues because of who he is. It’s like he was suppose to be Pooter’s brother because the world knew how hard her life was going to be and she is going to need a strong and loving brother to help her the rest of her life. He is her best friend (Cousin Gavin too) and it shows how much they love each other. There is also normal jealously, but more on Katie-Anne’s side of things. I think they think this is just how life is. They don’t know any different. It’s sad I think.

People ask me a lot about money. People fund raise for us. People give us money. I’m both grateful and touched and sad. If it wasn’t for the generosity of people, we wouldn’t be as okay as we are. We owe about ten thousand to the hospital. From the very first we made a decision that all of the bills would be in my name. Aaron’s credit score is pristine, and mine is not. I’m hoping to go through credit repair when this is all done, but I think it was the best thing we could do so that both of our credit scores weren’t put in the tank.  I think we’ve done well considering everything that having cancer entails. Medications, co-pays, treatments, and travel, along with everything else, takes its toll on a family. We are luckier than most in this respect. So many people help us. So many. I cannot tell everyone how very much it means to us. Everything from gifts to card, prayers and donations. All of it humbles me. I don’t know what I ever did to deserve such pure love.

I have often asked about my faith. I don’t talk about it much because I consider it a very personal thing. I’m going to try and share this with you. This is hard because I know my beliefs aren’t quite the same as others. I believe in God, I do. From the moment Katie-Anne was born, I said The Lords Prayer over Katie-Anne as I put her to bed. Every. Single. Night. If I wasn’t with her, Aaron did. I did when Cooper was born too. This is where it gets hard for me to explain. God was never a prominent part of my life. I went to Sunday school when I was younger and lived with my grandparents. I grew up Methodist. As I grew older and started learning about the earth and the cosmos I always questioned the beliefs I was given. From a very early age I remembering wondering why people couldn’t believe in God and evolution together. I thought that it was pretty arrogant of us to believe that a day to God was the same as a day to us. I thought that a day to God could have been a billion years to us. I’m talking about as early as about ten or so. That believe is one I still hold. I believe God is the reason behind the Big Bang and that he created us through evolution. I love the study of our past. I believe we are start dust. We come from the stars, that comes from God. I’m aware that many don’t feel the same I do and because of it, I don’t share this part of my life often. The night before Katie-Anne was diagnosed was the last night I ever said the Lords Prayer over my children. I think that was the anger. My rebellion. I still pray to God for healing, to let us keep my precious girl and I appreciate ever prayer said for her. I pray Cooper grows up kind and strong. But I don’t know that my prayers are the same.

Ugh, I feel fear of being judged just typing it, but from the very beginning, I said I be honest, so there it is.

When you have a child with cancer and they are growing through treatment, it is usually obvious. Bald head is usually the big sign. When I am out with Katie-Anne we get a lot of people that look at us. Most people go out of their way to smile or tell me how beautiful she is. How they love her big bow or her clothes. Usually shyly, uncertainly for sure. As she has gotten older I’ve had more kids see her and ask why doesn’t she have hair. It’s honestly funny watching the parents turn red and get embarrassed, but it’s okay I swear!  Katie-Anne doesn’t get upset and will usually touch her head and say, ‘I don’t have hair.” As if affirming that they are correct. It’s so very cute. I usually address the children directly, kindly, and explain that Katie-Anne is very sick and has cancer. The medicine that is trying to make her better also makes her hair fall out. Depending on the age of the child is how in depth my answer is. Sometimes Pooters will say she has buggies and my heart swells to overflowing for my brave girl. Sometimes adults will start a conversation with how beautiful she is and then very rarely ask me what she has and how she is doing. I tell them she has Stage IV Neuroblastoma High Risk and that we are fighting as hard as she can. Sometimes I will be asked her prognosis and though I know some people might consider it rude, I don’t. I don’t think curiosity is rude. I rather people ask so that I can take a moment to educate them about childhood cancer. The sad smiles she got when we were out used to bother me. On the inside I would be angry because I didn’t want their pity. That has passed though because what she goes through is hard and she deserves to have people acknowledge it. I don’t think pity it a bad thing most times, at least not in this case. If it comes from a good heart then I think it shows that a person cares about her life and sees how hard her struggle is, because this does suck.

As for me and who I am… I love geology, specifically volcanic activity on other planets. I love to learn and read. I would be a professional college student if I won the lottery tomorrow. I’d also get paper plates for the hospital but thats just me being silly. I honestly don’t have a favorite color but Katie-Anne thinks its yellow…so its yellow for her. I love the rainbow, I think thats where she gets it from. People see me as an outgoing person, but I’m content to be in my own company. I can be moody and when I am stressed, I’m a very hard person to love. I think about “one day” all the time. I am a people pleaser. I think I’m a person people can count on when they need help. I try and go out of my way to help anyone I can. I don’t do a lot of grey. I’m pretty black and white. I either love something or hate it, there isn’t a lot of in-between for me. If I had three wishes they would be… 1. The ability to heal any sickness. 2. To be able to read and control minds. 3. To understand, read, write, and speak every dialect (including slang) of every language on the earth.

That’s it. That’s all I have tonight. I need to get to bed. I have two 6am-10pm shifts in a row coming up and I need a good nights sleep. I hope that this is kind what you all had in mind. I tried to answer the questions that I saw. I’m trying to be honest so please don’t hate me lol. So this is who I am, the personal side of things. I don’t know how I’ll be in the future, but this is me when cancer happens.

 

 

 

 

 

 

 

 

The medical side of things.

I put a post on the Team Pooters Facebook page to see what people would want me to talk about. I got a lot of great answers. Some asking about the medical side of things and some asking about the personal side of things. I decided that I would start with the medical side of things and then do a personal side on a later post. I think the personal stuff is harder to write about, you know? So I’ll go with the medical side of things which is easier to write about and also, because I think it’s important that people know what this disease really entails.

I get asked a lot about how we found out she had cancer. What it boils down to is constipation. She couldn’t poop. She couldn’t bend over and pick up a toy because she hurt so bad. The thing is though, it happened so suddenly. I now know that her tumor had just reached the point that it was pushing on her windpipe and also in her abdomen which was causing her pain. I have been asked how did I not feel she had a tumor, hell I still feel guilt about not finding it sooner. The truth is though, is that her tumor was growing through her ribs from inside her chest and there was never any visible signs of it. Of any of them. The one on her kidney was growing downwards and not out. We had taken her to the doctor -four- times before she was diagnosed…four times. No one could feel it, even after they knew it was there.

The first thing they do after diagnosis and all the initial testing is to start chemotherapy right away. We started the next day even before her bone marrow or biopsy. We were told that the treatment wouldn’t change which seemed very odd to me at first, but now I understand it. Katie-Anne is on COG protocol (Children’s Oncology Group). There are several different protocols in the world and it depends on which hospital or doctor you go to. COG protocol starts with six rounds of different combinations of chemotherapies. For Pooters doxorubicin was the worst. It is known as the red devil and for good reason. It legit looks like a small red bag of Kool aid hanging there but the side effects were horrible. Mostly for her was mucositis. Mucositis is the painful inflammation and ulceration of the mucous membranes lining the digestive tract. Basically horrible sores in the mouth and digestive track. Katie-Anne had them mostly in the lower digestive track. It kept her from eating or drinking and made her so sick and miserable. The second worse one irenotecan, also known as “I run to the can”, also known as horrible diarrhea.

Katie-Anne also had her stem cells harvested. I think the official name is peripheral stem cell harvest. Sounds very exciting doesn’t it? At the time it was pretty traumatizing. All of this was very new and I have to say that looking back, it was one of the easier parts of all this so far. We gave her a shot called  G-CSF for a week before. This made her bone marrow start producing so many stem cells that they get pushed out into the blood where it gets run through an apheresis machine that looks a lot like a dialysis machine. It took a few days and we got enough to do 13 stem cell rescues if needed. To date we have used two. Here is a picture of what the line looked like. It’s huge.

After stem cell harvest we did two more rounds of chemo and had her first of two surgeries.  The first surgery was in her lower abdomen to resect (take out) the big one on her kidney, the lymph nodes, and any other small tumors they saw. The big worry was that the tumor “on” her kidney looked to be growing out of it so they thought they were going to have to remove part, if not all, of her kidney with the tumor. It turned out though, that the tumor was only pressing against her kidney and peeled off like, well… I don’t know what like. I was going to say grape but that doesn’t make any sense. It just peeled right off and they didn’t have to take any of her kidney. They got the nodes and a few little tumors. All in all, a huge success and she bounced back very quickly and now sports a sad face frown on her tummy. Here is a post operation pic from that surgery.

We finished up chemotherapy with the last two rounds. Then came surgery number two. This is the biggest one and the hardest for me. The tumor was growing out through her ribs. Dr. Murphy thought that he’d have to take about three ribs out. How do you send your baby to have ribs taken out. The original plan was to put a sort of tyvek material over where her ribs were to protect her internal organs. You know…like her lung. After surgery he came out and explained that her took ribs 1-5 out and part of her sternum. I was in shock. This seemed so impossible to me. He connected her clavicle (it’s usually connected through tendons and such to rib 1) to the top of her remaining sternum with wire, just a piece of tiny wire. He also did the same to rib six to the bottom of her sternum. Instead of tyvek they used pig collagen to fill the hole. The thought process behind this was that they tyvek might break as she grew and would require another surgery later on. The pig collagen would form scar tissue that would grow with her and also form a thicker protection layer to her now more exposed and open organs…again, like her lung and stuff. I cannot tell her how frightened I was and how guilt ridden. I truly felt that I had handicapped her for life with this, but anyone that has met her knows that you can’t even tell unless you know to look for it and even then, there is barely an indent. The other concern was that he was disrupting and shaving off some of the underlaying muscle that was against the tumor and that her breast buds might be affected. This means that she would not have grown a breast on that side. Happily though, he didn’t have to touch it and she should develop normally. On the rather funny side, if she developed like I did, then she might be too big and need another surgery for some kind of support of reduction. I have never prayed more for small boobies in my life. They has anticipated a week in PICU and another two weeks on the surgery recovery floor. She was out of PICU in three days and home day 8. She is a beast I tell you. Also now she is part bacon. Seriously, part bacon. Here is a couple of pictures post surgery.

After surgery is usually Stem Cell Transplant. This is where they give the patient such strong doses of chemotherapy that it completely obliterates the bone marrow. Katie-Anne never had this (of which I am glad because it is horrific) because her curie score (the number of “spots” of neuroblastoma) was too high. She was still at about 9-10 and they want you to be at less than 5. So we went off protocol and moved on to Antibody ch14.18.  Immunotherapy is a type of treatment that helps the immune system to fight cancer. The ch14.18  antibody specifically targets a substance called GD2 that is found on the surface of neuroblastoma cells. When the immune system detects the presence of the antibody on the cancer cells, it responds by trying to kill the cancer cells. The thought was to have Pooters do two rounds to see if we could clear enough spots down to go to stem cell transplant. The thing about ch14.18 is that it doesn’t only affect the cancer cells but also the pain receptors. What the heck does this mean? It means that it cause pain while it is being infused which requires a morphine drip to control the pain. There are other side effects like capillary leakage, itching and low blood pressure. For Katie-Anne these first two rounds were handled relatively well in comparison to most kids. We did have a lot of itching and some pain. She got puffy but had no capillary leakage that anyone could tell me. The hope was that it would get her spots down but it didn’t, not really. We saw great response the first first round and then nothing the second. Because of this, it was decided to go onto mIBG therapy.

mIBG is a test you may have heard me talk about. An mIBG Scan is a nuclear medicine scan which involves an injection of a liquid called meta-iodobenzylguanidine – mIBG for short. The mIBG then attaches itself to the cancer, specifically neuroblastoma cells so that the special scanner can see where the neuroblastoma is. Some amazing doctors somewhere in the world saw potential in this and came up with mIBG therapy. They got the idea to attach radioactive  iodine (I-131) to the mIBG to deliver targeted radiation therapy to try and kill the neuroblastoma. Think of it as really really really tiny Trojan horses. Radioactive ones. The thing with mIBG therapy is that she became, well, radioactive. She was put into a lead lined room with movable lead shields. Because she was radioactive , we couldn’t be in the room with her. In fact we got about 5 minutes every hour or so. We could see her through a window and had a com system to talk to her through. We had to wear a special suit and a Geiger counter which was monitored very closely. In addition, after release, she couldn’t be around her 1 year old brother for about two weeks and we couldn’t really cuddle with her. I failed at this miserable btw and now have had twice my life time worth of radiation. We also had papers to carry with us in the car because apparently police vehicles (some) have radioctive detection devices and if you get pulled over, you have to be able to prove it is her and not a bomb. Anything in the room with her in disposed of or put into a basement lead tank for six months in case you want it back. Crazy right? She handled this very well for a 2 1/2 year old with the help of a few drugs. Here is her in her mIBG suite. Notice the 3M everywhere? That is to protect the walls because if any of her body fluids got on the wall, they would have to cut it out and replace the whole wall.

We did two rounds of mIBG and then went back to antibody ch14.18. We didn’t see the response that we had hoped to from mIBG and the hope was that going back to ch14.18 right after mIBG would help boost the effects that mIBG could produce. We never did see that huge reduction in spots but it seemed to have worked gradually over the next 13 rounds.

In total she did 15 rounds of ch14.18 and we scanned often. Today they think her remaining disease may be mature but there is still more work to be done. We are heading to New York to Sloan Kettering for their antibody treatment, hu3f8. It is completely humanized which means that unlike ch14.18 (the ch means chimeric) which is partly made of of mouse stuff as well as human stuff, hu3f8 (the hu means humanized) is all human stuff. It’s suppose to be stronger. See the thing with neuroblastoma is that you want to throw everything you can at it. We never did make it to stem cell transplant because the mIBG had the same effect in obliterating her bone marrow. She had to have two stem cell rescues to help her marrow rebuild.

Holy crap what a lot of information. I know I’ve left some stuff out and possible gotten some of it wrong, but gees what a lot to digest. It’s kind dry I know, but there it is, her treatment, her medical side. It’s been such a long road already, almost two years, with lots more to come. But hey, that’s just how it is when cancer happens.

PS. One more picture of her right before she was diagnosed. I can’t think of a better place to put it.

Do you understand the words that are coming out of my mouth?

Today at work, I got a call from Grammy who was watching Pooters in the hospital. Katie-Anne was having a major meltdown. A major one. They had come up to get her for a hearing test and she was upset. Mostly it was because she didn’t understand where she was going or why I think. I had Grammy FaceTime with her and this is what I told her. I told her that she was going to have a test to make sure she could hear Mom’s music really well so that we could sing together in the car. I told her that it would be okay but Mommy wanted to make sure that her ears were working well enough so we could keep singing together. She calmed down after a bit and then got upset again because they had her in a hospital gown and not her real clothes. Easily fixed and she was on her way. Dr. Watt and I talked about getting all her tests done, or as much as we could, while she was in the hospital for New York. They want all new tests even though we just had them done a few weeks ago plus a few like an echo, hearing test, and a few other things we don’t normally do. No biggie right?

Wrong. I got a call at work from the audiologist that did her test and my sweet girl has hearing loss. She has high frequency hearing loss and she is going to need hearing aids. To say I was shocked is an understatement to say the least. Katie-Anne shows zero signs of hearing loss. She is a great communicator, and very much advanced for 4 years old. The audiologist said that she has trouble hearing certain high frequency sounds life “f”, “s”, and “th” sounds. This is crazy to me because she has no problem saying them. In fact the only sound she has a little trouble with is her “l” sounds. You know, like the word yellow. It comes out sounding like “yeyyow”. Still nothing that would ever cause me to think she was hearing impaired. I started asking a million questions which the lady tried to answer, but I got the feeling (after repeatedly telling me that at her next appointment she would have a specialist there to answer any questions that I had) that my questions were a little too much. Not in a nasty way, but I got the feeling that she was trying to get off the phone with me.

My first reaction was anger. What the hell else does my daughter have to go through? She’s missing ribs for God’s sake. Now moderate hearing loss. Then I felt guilty. I still have her. A couple of hearing aids is a small price to pay for still having her here with us. But damn it man… I know it could be so much worse, but it still hurts you know? Someone telling you that your daughter is hearing impaired is such a blow. It is irreversible. The “platin” chemo drugs are to blame. Cisplatin and Carboplatin to be exact. I mean, what else does she have to deal with? The same medicines that are keeping her from dying are taking little pieces away from her at a time. Big pieces really if I really think about it.

Now every time I talk to her, I listen for those consonants. How she is saying words. I want to whisper to test her hearing. Could they be wrong? I want them to be wrong. I need them to be wrong, but I know they aren’t. I’m making her repeat words like “fussy pants” back to me. Fussy pants for sobbing out loud.

She will already have so much to overcome in her life and now hearing loss. It just seems so unfair.

I reached out to Neuroblastoma groups on Facebook to see if anyone could share their story with me about the same kind of hearing loss. It really doesn’t seem to be that bad. The hearing aids they make these days have bluetooth…bluetooth. The kids can answer their phones or stream music through their hearing aids. They can personalize them and make them “fun” looking. But I don’t want “fun” looking. I want her to be able to be pushed into a pool as a 16 year old by her friends without worrying about taking her hearing aids out. I want her to be able to tuck her hair behind her ears and not get made fun of by cruel children. I want her to have a normal life. I feel so selfish in my anger, my resentment. I still have her.

The thing is… I will make it fun for her. I will teach her to not be ashamed. I will teach her that it’s just a part of who she is and she is beautiful. I will make sure she gets preferential seating at school. I will get her whatever kind of therapy she needs to be as successful as she can. I will do everything I can to make this not a bad thing. But not tonight. Tonight I am angry. Tonight I am resentful.

Also, lets talk about cost. From my research, depending on what kind she needs, it could be anywhere from $1000 to $3200 per ear. And from what I understand, most insurance don’t cover them. The best that I see is some will cover 85% of just one. She needs them in both ears.  This is so frustrating. How on earth are people suppose to do this? How are any normal families suppose to deal with these cost, coming out of nowhere? It’s not enough that there are medicines, treatments, travel, hospital stays, and now there are hearing aids. I’m not saying it can’t be done. I have an amazing tribe, and I will do what I have to do to get her her hearing aids, but all I can think about is families that don’t have their own tribes. What about these families?  We don’t qualify for any type of assistance because our income is so high. So high. Really? Because we are barely making it. I can’t even think of families that don’t have what we do have, how they can even make it day to day.

Tomorrow I will be fine, but tonight I am just angry. Not at her, not at us, I’m really not sure at what. Cancer I guess. I’m mad at cancer. Neuroblastoma Stage IV High Risk Non Amplified f’ing cancer. That’s what I’m mad at. Also my back. I’m pissed off that my back still hurts. I’m mad that it feels like a needle is being shoved into my butt. I’m mad at the stupid contractors at work that treat me like a stupid woman that doesn’t know the difference between a scissor lift and a fork lift. I’m mad that I love cheese and meat and fattening stuff and I’ve gained a millions pounds. I’m mad.

Tomorrow I won’t be though. Tomorrow I will go to the chiropractor again. I will go to work with my head high and my voice strong. I will FaceTime Pooters and show her the fidget spinners that I have for her (that she says perfectly btw). Tomorrow I will begin to research costs and types of hearing aids. Tomorrow I will hold her and whisper how beautiful and smart and amazing she is, and she will hear me because I know she still can. I still have her…and that’s all that truly matters. It’s all that matters when cancer happens.

A Wild Ride

Anyone that lives in Dallas, TX will have heard of Dallas North Tollway. Any big city has a highway like this. It’s busy no matter what time of the day it is. In this case, it was about 1pm on this Wednesday.

I had woken up to my sassy Katie-Anne in the bed with me, after crawling in at some point in the night as she often does. This morning though, she wasn’t quite as sassy. I felt her back, as I often do, to see if she felt warm. The ever present danger of fever always in the back of my mind. She did feel a little warm, but not too much. Much like she does after being snuggled close to me in bed for awhile, so I didn’t think much of it. I got up and call my chiropractor to see if I could get fit in early that morning because my back has been absolutely killing me the last few days (#ThanksWork). They said they could fit me in in an hour so I got up and hopped in the shower. I hugged the babies as I left.

As I laid on the weird therapy table with a huge heat pack on my back (so amazing btw), I got a message from Celina. Katie-Anne had a fever of 99.5. My heart immediately sunk. Oh no. I got up, paid, and left rushing home. When I got there, I retook her temp and it was 99.7. She had an appointment for clinic later in the day at 2pm, but I called the oncology clinic because I wanted to see if I should go ahead and bring her in early, or the very least get her appointment moved from just labs to a doctor visit as well. The threshold for fever for an oncology kid is 100.4. When you hit that mark, you go in no matter what because if they are neutropenic (no white cells) the risk of an infection is too great and even a cold can kill a neutropenic child. They said to monitor her fever closely but to wait until her appointment and they would change it to a doctor visit just to make sure, but that if anything changed, to call back. AT 12:25pm I took her temp and it was steady at 99.5 as it pretty much had been all morning. We laid in my bed watching Octonauts and relaxing. She reached over to hug me at 12:45pm and was on fire. I took her temp and it was 101.7. I jumped out of bed, phone in hand calling the oncology clinic, and getting our shoes on all at once it seemed. Out the door we went.

As I get on the highway, I see Katie-Anne in the back seat. I can see her just wilting as I drive. She wanted to listen to Moana, so I put it on so she can sing, but she was not really singing. Meanwhile I’m trying to drive and keep an eye on her. I cannot express the fear that goes through you as I watch her face get redder and her look just kind of glaze over a bit.

Now I’m an aggressive but safe driver when I need to be. So as I’m going down the Tollway, I’m signaling lane changes. I’m watching my surroundings very carefully, because at this point, I know I need to get her to the hospital asap to start antibiotics. I did something I’ve never done before…I put on my emergency flashers. I’m trying to get through traffic, but I wasn’t driving crazy or weaving in and out of traffic crazily. However, I was trying to get to the hospital. I start flashing my lights because I’m in the left lane and I needed people to move over. I needed these people to get out of my way. I wasn’t cursing or yelling. I was calmly looking for opportunities to pass people. There were very few people that actually moved though. Seriously… a car pulls up behind you on a highway, with emergency flashers on, and flashing their headlights at you, and people still refused to get over. I couldn’t believe it. Either people weren’t paying attention, or they just didn’t care…but I looked at their faces as I passed, and what I saw, was indifference, boredom, anger, or just ignoring me. I couldn’t believe it.

Then an amazing thing happened. A big huge white truck, that I had been behind, moved over for me only for me to get caught behind another car going slow in the left lane. I did a helpless gesture with my hands as I passed by the truck and I think he must have seen it. He must have seen Pooters bald head in the back. He must have seen something because something amazing happened. I can’t explain it to you other than it was a dance of cars. He sped past me and I wondered what he was doing. Then I saw. He made a pathway for me. I can’t explain it any other way. He took his big jacked up white truck and made us a path. He’d pull up to a car and crossed in front of them and then slow just a bit so I could get in front of him. He’d flash his lights when I could clear his bumper to do so. Then we’d cruise for a bit and he’d speed up seeing a hole up ahead and do the same thing, by not letting someone change lanes. It was amazing to see. It was like we were two vehicles weaving through traffic with one goal in mind, and that was getting us there quickly and safely. There was not cutting off people, it was like a dance. It’s like we knew what each other would do and we did it for about 15 miles. As I took the Wycliff exit, he honked his big loud horn and passed by.

I got Pooters to the hospital. I jumped out of my car, that I had kind of parked,by the valets (who know me and never make me pay for valet service anymore) and grabbed Katie-Anne leaving my keys in the ignition and run towards the doors. I knew they’d take care of the car for me. I get her up to the sixth floor where they already have a clinic room and port access stuff ready with antibiotics on standby.

She’s fine now, admitted with Neutropenia. We’ll be admitted for about 5-7 days until her ANC (white blood cells) get back up to at least 500. They were 10 today. Probably zero tomorrow and then hopefully will rise. Nothing so far in cultures and after a platelet transfusing, is feeling better. Well, that and lots of Tylenol.

I wanted to share my story about super jacked up white truck guy with you though. I know he will never see this, but I wanted to say thank you. Thank you for seeing my desperation. Thank you for helping me get her there safely. Thank you for an amazing dance of two vehicles. Thank you for caring. Thank you for jacking up (ridiculously, I might add) that white truck. Thank you for a wild ride. Just another kind of ride when cancer happens.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Over emotional

We’ve had a side effect that we haven’t seen in awhile. She hasn’t had just straight chemo in I don’t know how long. She’s what I would call over emotional. Every little thing sets Katie-Anne off into a crying fit…and I do mean anything. Today I put Moana on Netflix in the kitchen while I cleaned, which she loves to sing to. No biggie right? Oh hell no. She was not having any of it. It was too scary. Forget that she could just go watch cars in the living room, oh no, I had to turn it off. Also, please keep in mind that she would forget she was scared and watch it for a few minutes then erupt again in hysterical tears. I don’t get mad at her. I know it’s the chemo, or maybe how it makes her feel afterwards. Regardless , I know it’s not her fault. She hasn’t had this issue since the beginning of ch14.18 (Antibody treatment). What’s really strange is that chemo seems almost easy now after it. Read that again. Chemo is easy now after antibody. Is that not the craziest thing you’ve heard? My four year old is a beast. I mean it, Katie-Anne is so tough. We’ve had multiple doctors tell us that she handles everything so easily. Even with saying that, ch14.18 required her to be on a morphine pump during treatment. Not a huge dose, but enough to control the pain that antibody results in. Also there is a button with a little shot of extra morphine if needed (green means go).

Here’s some info on ch14.18 real quick.

The ch14.18 monoclonal antibody specifically targets a substance called GD2 that is found at high levels on the surface of neuroblastoma cells. When the immune system detects the presence of the antibody on the cancer cells, it triggers responses that kill the cancer cells. (cancer.gov)

The problem is that it also affects the nerve fibers that signal pain. So while it is getting infused, for 10 hours or more, it causes the nerve fibers to signal that they are in pain, which causes the patient to have pain. My little girl. The little boy down the hall. Across the country. Across the world. Some are worse than others. Some handle it very well, like Katie-Anne. In fact, towards the end, it was doubted that she even needed the morphine, but it’s part of the protocol so it was still there.

Oh did I mention ch14.18 can cause capillary leakage? Is that even a thing?!?! Yes it is. Let me throw some more information in here real quick for you.

Capillary leak syndrome is an extremely rare medical condition characterized by self-reversing episodes during which the endothelial cells which line the capillaries are thought to separate for a few days, allowing for a leakage of fluid from the circulatory system to the interstitial space, resulting in a dangerous hypotension (low blood pressure), hemoconcentration, and hypoalbuminemia. It is a life-threatening illness because each episode has the potential to cause damage to, or the failure of, vital organs due to limited perfusion. (wikipedia)

I get asked to simplify this all the time. Basically her blood can leak out of her blood vessels into her body which causes low blood pressure and can cause organ failure. Katie-Anne never even got remotely close to this happening. I haven’t heard of any neuroblastoma kids I know personally have this happen to them, but it can.

Let’s talk about hives and skin irritation. That too? Yeah. Katie-Anne did have this pretty bad at the beginning, but towards round 11 or so it tapered off and she just needed regular scheduled Benadryl. Before that she had to have Benadryl and a cocktail of other drugs to help keep her from being itchy. Oh and if you thought she slept all the time because of the drugs, you’d be wrong. She was like a drunk sailor in a bar. Right when her eyes would drift close, she’d shoot back up and start talking or watching her phone. She seriously never slept. The nurses were absolutely amazed lol.

Throwing up and diarrhea. This was a hard one for us at the beginning. She would come home and violently throw up. Then a day later, she’d start just having the worse diarrhea. Her poor little bottom. This is the main reason why we didn’t really go after potty training. I think it would have just been cruel. We learned very quickly to stay on the Ativan/Zofran rotation no matter what. Once you think you are okay, that’s when it hits…and you can never get it quite under control again. About round 8 Aaron had an idea to start her on probiotics. We asked her oncologist and Dr. Watt said sure why not. I still believe, whole heartedly, that this was the turning point for us. Her scans showed she started responding better to treatment and her side effects after coming home were greatly improved. The last 4 or so rounds she didn’t need any medicine at all after she got home. At clinic they’d ask what she had has and I’d saying nothing and they’d just look at me like I was crazy ( I am) and start going down the list. I just kept saying no, nope, no, nope, nope, etc.

Oh crap, the Ambien is starting to kick in, I better hurry.

I haven’t even started on mIBG therapy. That’s the whole “inject your child with radioactive iodine attached mIBG so that it can attack the neuroblastoma cells”. This is the “let’s leave a 2 and a half year old alone in a lead lined room with 3M all over, attached to a radioactive catheter”. I was able to go into the room with her for about 5 minutes, if I was lucky, and hour, in a space suit and a Geiger counter as an accessory.

So what’s my point to all this. In my world, and many like me, when we say we’ve had an easy treatment because the previous ones were so harsh, there is a problem. Now don’t get me wrong, I’m grateful every day that there is even such a thing as ch14.18 and mIBG. It could very well be thing thing that saves her life. But, and this is a big butt (see what I did there?), when I say that my four year old daughter has had an easy week due to the fact that she only got a strong dose of chemo…there has got to be a way to find something that doesn’t torture our children while they fight for a cure. An easy week…vomiting, not eating, emotional issues, or any of the number of side effects, that’s an easy week. I know of children that have died from what we call “transplant”…also a few that have come close, too close. Those side effects are even more terrifying.

People talk about more than 4%, that our kids are worth more than 4%, and I agree absolutely. I guess I want to know what it is going to take to really show those that make these decisions how horrible that world of cancer for children really is. I’ve seen pictures on Facebook that make me cry, and yet the comments are cruel. How could you show this? Why would you humiliate your child like this? It is so that you will see what it is really like. I’ve posted thousands of pictures of Katie-Anne, and all but about 10 are super cute, happy, bald cancer baby. I think because thats how I only want to see her. I’m not afraid to show the rest though. People have asked if I should really have posted a picture post surgery of her. Hell yes. She is missing most of her ribs 1-5 on the right side as well as part of her sternum. Her shoulder  and arm are basically connected to her body by a wire that is connecting it to her remain sternum on the top and rib 6 on the bottom. She has a sheet of pig collagen in there to try and form scar tissue. She’s part bacon you guys… Think about this…seriously.

These children are our future. Why are we not investing in them more than 4% of the cancer research budget. I don’t know that I have an answer. I wish I did, but I don’t. But I think that’s just how it is when cancer happens.

Insomnia 101

When I was growing up, I had no trouble sleeping. I learned to fall asleep at a moment’s notice. I had to. Living with my mother taught me that I had to get sleep when I could because I might not be allowed to sleep for a few days at a time. She would often drink and then keep me up to keep her company, make me watch something on tv, or just to do all the things that an abussive parent does. One of the more memorable times that I had to stay up for days on end was during Desert Storm. Sounds crazy right? My mother would start drinking and then make me stay up to watch TV with her because she thought that it was important that I know, as a 16 year old, what was going on in the world. I didn’t dare fall asleep because then it would turn into something ugly and I knew better than to even try. So I would struggle to stay awake every night, struggle to stay awake in school during the day, and usually fail miserably at one or both of them eventually. It was a no win situation…and I knew it. Because of this, I learned to sleep whenever I could safely do so. The bus ride home, before my mother got home from work (though I had to be awake before she got home or else I was being lazy etc), any time I could really. I had a friend named Breland and used to go to his house. I loved it because his family let him collect mattresses. Looking back on it, it was really strange. He would stack them up and we’d climb up so high you could reach up laying down and touch the ceiling. I used to go “play” over there but in reality, I’d just nap for a little bit before going home. We were all very poor and living in a very run down neighborhood  in run down apartments. We didn’t have much and little food. To this day, I absolutely -hate- peanut butter. I think for about three years growing up, that’s all we had to eat and now even the smell of it makes me sick. I know now that most of her money went to alcohol. Those moments though, that I could get away, were treasured beyond belief.

As I grew up and moved in with my grandparents, I was able to sleep normally. The only thing I did was horde food. My family would kind of make fun of me a little because I would take bologna and cheese into my room at all hours and hide the bologna and American cheese wrappings in my room, like I was afraid to get caught eating. My Memaw had to stop buying bacon because I would sneak out and steal bacon and eat it raw. True story. I still don’t know how I never got sick from it, but I never did.

About ten years ago, I started to change. I would stay up all night, not able to sleep. I would ( and still can) stay awake until all hours of the morning and then go to work with as little as 1-3 hours sleep if I was lucky. After I had the littles, it kinda worked out because they were always waking up and I would be able to just hop in there and do what I needed to do. Finally this year, I reached out to my doctor for help. With everything that was going on, I just couldn’t do it any more. I wanted to sleep. I tried to sleep. I just couldn’t. People would tell me it was stress, or Katie-Anne’s diagnosis, or work. It wasn’t though. Theres a meme going around that has says “My brain during the day: potato, potato, Ching Chong tomato. My brain at night: I wonder why the earth was placed exactly here and allowed us to provide a perfect climate to sustain human life”. This is me. I don’t lay awake every night thinking about Katie-Anne’s cancer, or money issues, or work stress. My mind can’t shut down and it wonders from Disney to cleaning out my car to why the moons that revolve around Neptune have such dramatic volcanic activity. I got to the point that I was a zombie. I want to put “literally” a zombie because I’m pretty sure brains were starting to sound tasty. I was short tempered, tired, forgetful, and just generally not in a good place. When I talked to my doctor and told him all of this, I even said I don’t want the “drive to McDonalds kind of medicine” and he laughed and told me thats what I was getting. Ambien. Sweet sweet Ambien. I think it has restored my sanity. I’m sure it’s not for everyone… I’m looking at you cake baking at 3am ambien takers. For me though, it’s a life saver. I haven’t had any side effects except one. I’m a sleep shopper. I seriously will browse Facebook while falling asleep and I have bought stuff that I don’t remember buying until I see a charge on my account. Nothing big, but funny stuff like charcoal toothpaste, those feet peeling things, and and couple of outfits for the kids. I’ve had to learn that as soon as I take a pill, I have to put my phone down. The down side to ambien is that I wake up at about 4am, or about 6 hours from when I take the pill. It’s as if its done and my body is like, “sorry about your luck lady, get up!”

The whole reason I am talking about it tonight is that I can’t take one. I’m at home alone with Cooper while Aaron is at the hospital with Pooters. It knocks me out so I don’t take one if I’m home alone with the kids or in the hospital and may be needed for care. It just knocks me out! Last night I was with Katie-Anne and tonight I’m with Cooper so it’s going to be two nights with little sleep. Maybe I’d drink a glass of wine if I could but I’m seriously intolerant of alcohol so I just don’t drink. Also, lets be honest, alcohol has never been kind to me.

Oh and I’ve tried calming teas, music, white noise, melatonin, and just about every other thing you can think of to fall asleep so no worries on that end.

I’ll get some sleep tomorrow night I’m sure. Hospital weeks are hard for many reasons, this being one, but thats just how it is when cancer happens.