Meet Lexie

WARNING: We have an emergency news update- Due to recent behavioral changes brought on by a high dose of steroids I will now be referring to Lily as her alter ego Lexie. Lexie is very demanding and unwilling to compromise. She needs everything RIGHT NOW!!! Lexie requires that I have at least 3 food options available to her at all times throughout the day or night. If these demands are not met then Lexie starts screaming a series of chants, moans, and groans that can only be described as an ancient mating ritual. This will go on indefinably until Lexie either gets what she wants, decides she wants something else, or, very rarely, falls asleep. Lexie is very territorial and will pounce and attack if she feels threatened so its best to stay away until Lexie is gone which will probably be a good 5-7 days. We will update you more on Lexie as tonight program continues.

For some reason these blog posts are getting harder and harder to write. I don't know if its because we are in a really intense phase of treatment and I'm trying to pretend its not real, or because I feel... nope, that's it. I don't wanna believe its real. With no evidence written down it's not happening right?

I admit I was having fun writing about Lexie but the truth is right now I have one sick baby. She was neutropenic on Tuesday when we went to chemo and in this phase they just continue on treatment anyway. (Normal neutrophils-cells that fight infection, should be around 1400, they usually don't do chemo if her neutrophils are under 500 which is considered neutropenic. Lily was at a 370 and they did chemo anyway. I have to assume at this point that she no crime fighters left.) After chemo on Tuesday I watched the color drain out of her. She took a nap and when she woke up she was as white as a ghost. She has some color back now but still just pale with dark red circles around her eyes. I am glad that we get a break next week. We go in next Thursday to check counts and then if we stay on schedule and her body can produce more neutrophils fast enough we will be planning an over night stay at our favorite resort, St Luke's Children's Hospital around the 25th or 26th of Aug. If she is not ready then, we will wait until she is.

It has taken me until this last week to truly understand how sick she must feel. Mostly right now she just sits or lays down. She will play but she gets worn out fast. The other day I was cleaning and the TV was on. She came up to me and asked me to turn it off so I did. Next thing I realize its quiet so I went to find her and she had randomly made herself a bed on the floor and fell asleep. I was pretty shocked. Not that I blame her but for my 3 year old who hasn't even been sleeping at night, to just lay down and sleep means she is exhausted. She has still been like that ever since. Last night, like the creeper that I am, I just sat and watched her sleep on the couch. There was something contradictory about her face, Peaceful yet troubled at the same time. Its hard to imagine that combination on 3 year old without seeing it.

She will remain on steroids until tomorrow and then she is off of them until maintenance. Despite her being so worn out right now, she really has responded well to treatment so far and we really are lucky that we gone this far with out any big setbacks. The good thing about the steroids are that they do give her a small burst of energy for an hour or two after taking them. We will just continue to fight and stay healthy here and pray for more energy and strength.

My Fighter and the Little Family Clown

Okay I know that I have been super slacking on my updates lately so we have a lot of catching up to do! Lily is officially in Delayed Intensification (DI). This is pretty much how it sounds, its a very intense and harsh round of chemo. Its done over two 29 day spreads. The first 29 days started with another lumbar puncture and two IV chemos. That was last Wednesday. One of the chemos that she got is extremely nauseating and for the first time since her blood transfusions, she actually got sick and threw up from chemo. Its pretty amazing that she hasn't had any other reactions or complications thus far. She is amazing. We also started steroids again. Its a week on, week off, week on, week off and then we are done with steroids until maintenance! YAY!! Friday she got another chemo that is really nasty. It has a whole list of incredibly scary possible side affects or complications but she did great. In fact we went back to the Dr. today and her blood counts actually look really amazing! Other than a little swollen liver (totally expected), and some itchy skin from the steroids, Lily is doing great. We finished this week of steroids today so the itching should go away. She goes back next Tuesday for more chemo and then a week after that just to check blood counts and then we wait. This is the delay. We wont start the next set of 29 days until her blood counts are back up to normal. This could be one week, or it could be 3 weeks. I don't have major details on the next phase but I know it starts with a planned over night stay in the hospital.

Honestly though, other than this being an absolute nightmare of a 5 months that no parent should ever have to go through, it really hasn't been that bad. I read a lot of blogs and Facebook posts of other families/parents fighting this same disease with kids not much older than Lily, and some of the side affects of these drugs can be horrific. Other than the ridiculous side affects of the steroids, Lily has gotten a total of one ulcer on her arm, which was just basically like a little scratch, and has thrown up twice. Of course some days she is extra tired and her legs hurt a lot some days but really, how much better can it get!! (knock on wood) I really am feeling so blessed that she has been able to deal so well with everything that I just have to say it out loud. I know I complain a lot about things sometimes because the everyday struggle is real and still there, and she is still really sick. But she still has hair and the Lily I know still totally shines through. That is a huge accomplishment for my little fighter, and I have no doubt the prayers are working.

Tomorrow happens to be a big day for Makinlee as she has her FIRST BIRTHDAY! We are just shocked at how fast this year has gone. With all the attention that Lily has been getting lately I am excited to just try and focus my attention on my little bug. She is so funny and just has the best personality. She is always playing games with me and doing things to be funny. She is the family jokester for sure. She says some words, Momma, Daddy, done, ouch, uh-oh, Lily, and a few more that she will spit out every now and then. We are so blessed with our beautiful family. Having children is nothing like I thought it would but everything I hoped it would be. This is a week to celebrate our little accomplishments, high blood counts, and making it one full year of life. So far its been a pretty good week.

Past regrets make present memories

When I was younger and my mom was battling cancer I remember that she used to ask me all the time to rub her legs before bed. She would let me "stay up late" if I did. I was 10-11 years old so naturally, with older siblings able to be up late, that was exciting on a school night. She would sit in her maroon recliner, as she always did, and I would sit on the floor with her legs over my shoulders and, with her favorite lotion, I would sit there and rub her legs for maybe 1/2 hr or so. After a couple weeks I got sick of doing it every night and refused even though she would still ask. Even with the pleading I remember on her face I turned her down. Now I know that she probably had deep muscle aches that were soothed by my massaging, but back then I just got tired of doing it. Life has literally come back full circle as my daughter now begs me every night to rub her legs. Even before Lily got cancer I used to think about my mom and the regret that I had for not sitting there EVERY night and massaging my moms legs. I still think how selfish I was for not doing it after every thing she did for me. Now, with Lily, and dealing with my second experience with caner, I don't want any regrets, but still sometimes I find myself rubbing her legs half-assed, or making excuses to leave the room at bedtime quickly. Even as I sit here at 1:45 am, I am having to stop typing every 2-3 minute as I hear Lily randomly writhing in pain yelling "NO, NO" because her legs hurt, while she is laying on the couch on the other side of the wall. My first instinct is to be annoyed that she still isn't asleep, but this is exactly why I am making this post.  The point of  this confession is I'm just trying to remind myself (and by typing it out it  makes it real; no excuses) that when I see someone I love hurting, suffering, sad, scared, worried, or whatever, I need to allow the world around me to fall away and focus on just them. Nothing else should matter but what I have right in front of me. I will say this to everyone, don't let regret haunt you over simple things. Be in the moment and love unconditionally. I have to believe it's more than worth it.

Grab the bull by the horns

This past couple weeks has been a little bit of a whirlwind. Nothing super significant has happened but just emotionally with me. I know this sounds selfish but sometimes I almost feel like this is harder on me than Lily. I admit I have been a little depressed lately. Its the monotony that's so grueling. I always thought if I was a stay at home I would be the mom that did stuff; Library, park, swimming pool, whatever. Now I almost feel like I cant do that stuff. How can she wear a face mask to protect her against germs in the swimming pool? Why expose her to unnecessary germs at the park? Besides that, sometimes not only do I feel like she is too exhausted to do all that, I'm too exhausted. So, all that considered, my life amounts to the constant cycle of everyday being the same and the depression that follows. I mean when the highlight of your week is chemo, just because its the only time you get out of the house, then we have a problem. Well I was sitting at home the other day and something kinda switched in my brain. It was really weird but something hit me and I just had this moment that was like "Hey, this is your life. You can either spend the rest of these 3-5 years in a state of depression and self pity or can decide to step it up and LIVE in spite of everything." So I'm actually feeling a lot better. I feel like I've moved on to the next phase of all this. I'm not actually sure what that phase is but it seems to be in the realms of grabbing the bull by the horns and holding on for whatever wild long ride he gives me. I also learned something else recently about my situation. Its been almost exactly 4mo since Lily got diagnosed, which isn't really that long ago (but it feels like ages), and I think I have finally accepted that this isn't some sick joke that I am going to wake up one morning and realize it was a dream. I've gotten to the point where, for the most part, its not constantly on my mind, but I have moments where I look at her and can see it. But mostly, I've accepted it and don't think about constantly anymore. What's a little shocking for me is when people that I'm close to, but see very often, talk about Lily, I can see the pity and sadness in their eyes. Then I remember again that this isn't just something that everyone goes through, this is a big deal. Then the shock and worry kinda comes back for a minute as I remember the seriousness of what we face. I cant blame them, Its all part of every ones grieving, and I'm certainly not the type to not talk about it, but it is shocking.

Now on to Lily. She had her last round of chemo for this phase back on Monday. Her counts were good, which is always good news, so they upped the dose of chemo as planned. I can tell with each increased dose it wears her down more and more and for longer and longer. I have also started to see some side affects from the actual chemo and not just 'the other drugs'. She developed an "ulcer" on her arm after the last treatment that still hasn't gone away. It looks just like a cigarette burn on her arm; its a perfect round circle right below her elbow, that boiled and blistered like a burn. Its healed some but not fully. I have seen a couple others pop up in other places but none have stuck. She also mentioned after chemo this time that her eyes "see red." They look different to me now, almost yellow, so I'm going to call tomorrow and maybe swing by MSTI for peace of mind. Mostly she is doing really well though. We haven't had any throwing up or refusing to eat, no unplanned hospitalizations since diagnosis, and she has responded well to treatment. Most importantly she still has mostly maintained her happy, carefree, and bossy attitude. :)

As for whats coming next we have been given some more info. Next Wednesday she goes in just to have her blood counts checked and if her blood counts are good then, then we will plan to start 'delayed intensification' a week later. That includes (but is not limited to) more steroids, oral daily chemo, several different IV chemos a week, more spinal taps, a planned hospitalization,  and IV chemo that I will have to administer here at home. I still don't know all the details but that will hopefully start in about 2 weeks. They told me up front that she will probably be sick, drop in blood counts, most likely need a blood transfusion or two throughout, and that her hair really should go. So for now we are just trying to live as much as we can until life gets tough again. We really do appreciate everyones support and generosity through this. Its been so comforting to have great friends and family. We continue to ask for prayers and well wishes to get us through this next phase. I also just wanted to let you now that if you wanted to buy a t shirt to support Lily my brother designed a shirt that you can get,. Here is the link. They really do look great on and who wouldn't want to rep Lily! https://www.booster.com/orangeforlily2

Time is deceptive

Time is a crazy thing. It can seem to go fast and seem to go slow, but in reality never changing its rhythm. Its the same for everyone no matter where you live in the world or what language you speak. Its our planets universal connection, that like it or not, everyone must follow. But even still, with its constant steady ticking, why does it sometimes seem so fleeting? Like you just don't have enough time?! Days to me seem to go by so slow yet weeks go by much faster. I live my life day by day but each day just seems to drag on the same way and I'm always so exhausted! But even still I just feel like I have to spend every moment enjoying my time with Lily and Makinlee. Makinlee is 11 mo old and I honestly feel like I've only been around for 5 months of it. Time; it really is constant, yet ever changing.

Lily saw her Dr. on Thursday and got a spinal tap and chemo in the spine, (they call it a lumbar puncture) as well as 2 different IV chemos. They have been upping the dose of  chemo every time so she gets a little stronger dose each appointment as long as her counts are good. I'm starting to see now that this last dose of chemo is really taking its toll on her. Its probably the first time (other than steroids) that she has gotten chemo and I can really tell how tired and sick she feels. She is still all smiles and tries to run around and play as much as she can, but I can just see it in her eyes how sick she feels. Her head aches, her muscles ache, and she has a very short fuse. Lots of tired fits and crying. I know that may sound pretty normal for a 3 year old but its different, its a whole new level of exhaustion. Overall tho, she is doing really well. Her blood counts and appetite have been more steady, and she hasn't been super sick (throwing up), just really tired. The one chemo she gets does make her susceptible to ulcers and mouth sores and Friday morning she woke up with a dime sized ulcer on her arm. That was a little alarming! I'm keeping a close eye on it but it doesn't seem to be infected or anything so that's good. We know that all her treatments have side affects. She goes back in next Monday for the IV chemo and then 10 days after that we start the next phase. I've been given a little info about what to expect for the next phase but no real details yet. We will find out more next week. 

I think that the main thing that I need to remember for my lesson this week is to be grateful for the time I have. Just trying to live in the moment but planning for a long future with my family. Life is short even if the days or weeks seem long, and I've been reminded several times in my life that your life could change forever in an instant. 

Back on Track

Lily had her appointment yesterday and I was very surprised to hear that her counts were actually really great! I had so prepared myself to hear that she wasn't going to be able to get chemo that when the Dr. ordered it I was like really? Oh okay. I feel a lot better knowing that she can recover quicker from chemo than we thought. She got a higher dose this time because she recovered fine from the last treatment so I'm going to keep her on the nausea med and Tylenol for headaches. So far Lily is doing great today and eating and playing.

 Next week we go in for another sedation/spinal tap and chemo again. I cant believe that this doesn't even phase me anymore. Its like, been there done that, after doing it 5 weeks in a row. The Dr. gave me a little glimpse of the next phase to come which will start in about a month and it is going to be really tough. More steroids, a planed hospitalization, and lots of different chemos, and going in a couple times a week. She told me to expect low counts and a tired girl. We are thinking after talking to the Dr that it would be best to some what limit visitors and activities during this time so we going to try and get all the fun things done now that we want to do this summer.

 Okay so now the confession portion of my post. The circus was in town over the weekend and we went. :( To everyone else that may seems like a normal fun memory for a 3 year old but for me I just had so much guilt for taking her there. I am normally the mom that takes a million pictures of everything but I couldn't bring myself to take any. Not. A. One. I wanted no evidence that we were there. With all the people and animals I just panicked inside that she was going to get really sick. Part of me justified my guilt with the fact that she is still 3 and deserves to still have some fun and make memories, and the other part of me says that when she is done with all this there will be time for memories; right now she needs to get better. I'm still learning. I'm still learning how to listen to my instincts, let guilt go and enjoy every moment with out worry. I'm learning how let the stress go when we are playing and having fun, and enjoy everyone's laughter. And I'm still learning to be grateful for the health and laughter that Lily still has, but I also know that that could change in an instant. So still we proceed with caution, but I know that I cant feel guilt for giving her fun memories to go along with all the hospital memories. I think I owe her that.

With all the things I am learning about guilt there is one thing that I know for sure. I cant sit here all day and try to find how or why this has happened to Lily. I have been assured over and over again that there was nothing I did, or nothing I could have done to prevent this, and any attempt at trying to find a reason is not going to change anything, and is quite frankly, just not helpful. I have to trust that we are all supposed to learn things from this and that is why this happened. Its not from something I did/didn't do, something I fed her or gave her, or from somewhere I took her to/exposed her to. If I sat here and thought about all of the possible causes I would literally go crazy. I'm not looking for reasons or statistics on anything. If the Dr.s really knew what caused leukemia then they would know how to predict/prevent it from happening, but they don't. That's just something that I cant think about and just a little something that I needed to get off my chest.

Trust is earned, not given

I realize that I haven't given a recent update on Lily. I have been extra worried about her for the last 2 weeks and that makes me worry even more. I keep thinking that we are going to hear bad news and end up staying at the exclusive, invite only hotel, St Lukes Downtown. Last Friday her neutrophils were at 750 which is the lowest number she can have and still get chemo, so we did our 2nd round of chemo. She handles it pretty well especially if I give her Zofran (anti-nausea) and Tylenol before bed. Its actually when she gets her best sleep. Its been 7 days since chemo and she has a pretty good appetite, and is mostly happy and energetic but there's just something there. I can see it in her eyes that shes is uncomfortable and exhausted. I keep a thermometer basically in my hand and check her temperature all the time and no fever thus far.

Since our first initial diagnosis we really have gotten nothing but good news up until starting this phase. I know that this is a pretty intense treatment phase getting 2 chemos at the same time. So far it seems we get chemo, check counts after 10 days, shes neutropenic, so we wait 4 days and then she is better, barely, to do chemo again. Trust me I'm trying to keep a hopeful mind but its hard when her eyes look so sad. We go back in Monday and we will know more then. The plan is to have more chemo so we will pray that her counts are up!

So there is something that I have discovered through all this. Its about Makinlee. When she was born I felt so close to her in a mothers way. Lily was an easy baby and would let anyone feed her and hold her and would snuggle everyone, but Kinners only wanted me. She really didn't want other people trying to take care of her much at all. It was like that until Lily went in the hospital and then I honestly only saw her like 4 or 5 times the whole 8 days, and only for an hour or two each time. I missed her so much and I had so much guilt that I had just dumped her off on other people for a whole week but I knew Lily needed me most. What seemed like a month in the hospital to me must have seemed like a year for Kinners because when we finally did get home she didn't want anything to do with me. Honestly she would cry if I tried to put her to bed but then Jake would and she would go right to sleep. Its like one day we are home and and everything is fine and then next time we are home she doesn't trust me at all. It has taken me up until about 2-3 weeks ago to gain that trust back, for her to really let me back in. Especially this week, is like the first time since, I don't even remember when, that she snuggled me without being asleep. That she hugged me, and called for me, and reached for me. As a mom I expected there would be times when I would feel closer to my girls than others but I never expected to have to earn back an infants trust. It has been an unexpected lesson for me. Even in my most precious relationships, my trust is earned not given.

At this point this cancer journey is far far from over. That makes it very hard to predict, or plan what life will be like in the future. I have no doubt that Lily will kick Leukemia's butt, but what I don't know is at what cost and sacrifices it will take. We have to take everything day by day, hour by hour. We cant make a lot of plans a head of time and that's okay. We are learning, growing, and changing as this process goes on. We still appreciate all the love and support that we get from each of you. its what gets us through, and we feel lucky to have such a great family and community.

Photos courtesy of Tina Weeks, OSM Photography