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

Warning: rough road ahead, expect delays

Its been almost 2 weeks now since my last update. I don't like coming on here with only bad news but since its been so long I guess I just need to lay it all out. Lily had her first bout of chemo in Phase #3 on May 27th. She needed about 3 days of anti-nausea meds and then seemed to be doing fine. That Sunday however she woke up with a UTI and we ended up taking her in the ER to get treated. She didn't have a fever or anything so the ER didn't draw blood. We were sent home (5 hours later!!!) with some Augmentin and instructions to watch her close. Monday she started to have diarrhea. By Monday evening it was pretty bad. I figured it was from the antibiotics, and since she was still eating and drinking fine, I wasn't too worried. (They always say at MSTI that if she gets diarrhea or is throwing up to call day or night.) At about 8:40 Mon. night the ER called and said that they cultured Lily's urine and found Ecoli and said that the Augmentin wont help, and they called in a different anitbiotic.

Okay let me back up just a little bit. Lily takes Septra (generic for Bactrum, an antibiotic) 2 days a week, every week as a preventive measure to help lower the risk of lung and intestinal bacteria. In the ER they told me that Bactrum is usually the best med to give for this but because she already takes it the bacteria may have developed an immunity to it. They knew that Augmentin wasn't the best thing for it but since its such a strong medication they decided to give it to her hoping that it would knock the UTI out. They did warn me though that there was a chance that it wouldn't help. 

Okay so back to Monday night. I had been watching her very closely with the diarrhea and still no fever but I admit, when the ER called me and said Ecoli I might have gotten just a little worried. I know now that is a pretty common bacteria for UTI but still, with Lily anything can happen. I called MSTI and talked to them and they didn't seem concerned so I just kept her tight under my wing. By Tues night the diarrhea was gone and so were her complaints of UTI. 

I guess I should get used to frequent panic and worry spouts but I don't think I ever will. Now that I know that the worst can happen I cant stop myself from going there often. Outside I may look calm and collected but inside I'm like freaking out! It like 0-60, no warm up. UGH!

Sooo, anyway, Lily is supposed to be getting chemo every 10 days. Since this time day 10 fell on Saturday they moved her appointment to yesterday. We went in and after getting her blood results back we found that Lily is once again neutropenic and we can not do chemo. I'm not completely surprised this time like I was last time but its still SO discouraging. I feel even more helpless than normal when we have to delay treatment. The good thing for Lily, though, is extra recovery time. I can tell everyday she seems to be willing to eat a little bit more and with that comes her energy and attitude. :) So, for now we are keeping her quarantined at home, with her new swimming pool and various art projects. We will go back in on Friday to check blood again and hopefully she will be up high enough that we can do chemo.

Okay so now for my epic confession. I think I also had a day of neutropenia. Not physically in my blood, obviously, but mentally and emotionally. All my emotion fighters were worn out and just gave up. Lily has not been sleeping well. Its not just, 'oh sit here and watch cartoons while I sleep and eventually you will fall asleep,' its like she is crazy, jumping on and off stuff and on me, getting into things, and maintaining this level of energy until 3am. Sunday I was just exhausted after 4 nights of this. I literally couldn't get up. It was too much energy to even breathe. When I was finally forced to get up (by the small one crying in the crib) I just sat on the floor and cried. Anytime Lily said anything I just cried harder. Then the guilt set in. How could I be so selfish and exhausted when the kid with cancer is the one up running around having a party? I'm supposed to be the strong one. The rock. But then the exhaustion set in again and I realized that I didn't have the energy to support even myself. And then the crying started again, and then the guilt, And so goes the cycle. Finally I called my sister and she talked me down. She gave me some excellent advice, one piece being drink more water. I realized that I hadn't really been taking very good care of myself. I couldn't remember when the last time that I drank water was and I hadn't been taking my own medication. I feel like I had hit rock bottom, a place I don't ever want to go again. So I am happy to report that with some much needed support from the hubby and some excellent advice from the sis I was able to get a good nights sleep on Sunday and wake up Monday with a strict schedule for my own pills, a plan to eat healthier and the intention of getting more exercise. (Still working on that one. Anyone have a bike stroller thingy I can hook to the back of my bike so I can pull the kids around?) 

So as this whole process goes on I'm learning that its harder to learn lessons when things are going great. Its in those moments of fear, and worry, and exhaustion that you come out of the fog with some clarity and experience a new life lesson. You hear it all the time, "You cant take care of her, if you don't take of yourself." I've learned that lesson twice now but the first time we were in the hospital and I had the nurses help. This time it was just me and the lesson really sank in. I will start taking better care of myself. Lesson 2. Just like how I look calm and collected out side but inside I'm freaking out, so is Lily. She is still 3 and she has energy and she laughs and plays and sings, but inside she is still sick. Its hard to believe with how good she looks, and I forget (or don't believe) but the blood doesn't lie. Despite her outward appearance, we still have to confine with caution. Wear a mask wherever we go, wash our hands like crazy and use sanitizer, avoid large crowds, and not allow the sickies to come visit, and, hopefully, by Friday we will be ready again to continue on with the plan. Until then friends, stay well!