Finally some Fun

Okay so it's been a month since my last update so I figured its time to write. What a crazy year this has been! This past month I have just tried to focus on getting life back into some type routine, implementing a new schedule, enforcing some discipline, and getting my house off the verge of being asked to star in an episode of hoarders. Now that things are a little more back to normal I can finally catch up on my blog and my crafts!

Lily has been doing really well lately other than some red dark chemo eyes as we call it. She is in interim maintenance 2. She has done this phase before but we will finish chemo at a higher dose. She gets chemo every 10 days and each time they up the dose of one of the chemos by 15%. Because of the CMV that she got before they have started giving her an immune booster every 4 weeks which has allowed her to keep her blood counts up enough that we haven't had any delays in treatment. (On a side note I'm finding out in all this that Lily doesn't recover her counts very quickly at all! It's not really been much of an issue but her Dr. very subtly mentioned it once and based on some of Lily's friends I've realized this) She has appointment on Friday this week and then we get ready for maintenance!!! Maintenance will last until May 2017 and I don't have all the details yet but I know she will be taking oral chemo everyday, and will be alternating between steroids and a different oral chemo for the other weeks of the month. Every month also starts off with spinal tap, and chemo in the spine and IV. We have been told before that once we get into mait. that we will be able to put her in some classes and dance and swim lessons are the top of my list! We still cant do school though for a while :(

Since Lily is finally feeling better, and since it has been so long, we have gotten to do some amazing things. Lily was given the opportunity to go see  Disney's Frozen on Ice and she LOVED it! It all started because I had entered her in this contest to win a trip to Disney and they saw her video and wanted to give her tickets. We sat right up front which was so awesome. Then they did a news interview and gave her the chance to meet Ana and Elsa back stage. Lily was so cute when she went up to Ana to talk to her! It was such a fun night! Here is the link to the news interview.
Fit for a princess

We also got to go to Boise State and meet the football team and got most of the team to sign a poster for Lily. Its hard to remember with how HUGE these men are that they are just still young men! at only 18-21 years old and yet they were so sweet to Lily. They played with her and talked to her and would have hugged and held her if she would have let them. We love getting to do things like this because it gives us things to look forward too and being such big Bronco fans its cool to see your teams coach and players in person.

Okay we do have one more big announcement!.... (No I'm not pregnant! Are you crazy?) Lily has official been granted a wish from Make-A-Wish and for Lily's 4th birthday and Jakes 30th birthday we will be at Disney World!!!! we are going April 13th-19th 2016. We are so dang excited I can even tell you. We get 3 days at Disney World, 2 days and Universal Studios Orlando and a day at Sea World. Because we are going there for a wish we also get to stay in a the Give Kids The World Village inside Disney that is only available to Wish families. It gives us free meals, fast pass on the rides and the use of all VIP lounges and family lounges. The village is there just for wish families and I cant think of anything cooler than staying in the village with other wish families all across the world!

After this last month I have been able to once again see all of our blessings. I know I shouldn't admit out loud that its was hard to see the blessings before, but it was. We just owe a huge thank you for everyone that has bailed us out in the last couple months. Its true what they say about how money comes and goes, they just talk about how hard it is when it goes. We really are so blessed for our family and friends, MSTI peds, 4th floor peds, and all the people that have given us the breaks from life that we needed. We are back in areally good place and we would like it to stay that way!

Its been awhile

So I have been in a little bit of a slump lately and haven't really had much to write about except everything woe is me. I am still kind of slumping but its getting better. Lily was in the hospital so much in the last two months, and, so much has happened that I just felt/feel so out of control with everything. Then to make things worse I would sit there and compare myself to everyone around me and think "why can't I keep my house clean like her?" "Why don't I have to energy to work out like she does?" "Everyone is going to think I'm lazy and a bad mom because I couldn't cook tonight." I just kept bringing myself further down and down. Now I truly feel like I'm past my epic pity party but there are things I still don't understand. I hear a lot that people see me as this strong "warrior" that can "slay dragons" but I feel so opposite than that. I feel like the world around me is spinning a million times a second and I have to hold my family down, and, at the same exact time reach out of the spinning vortex at exactly right moment to grab whatever I can for everyone. That to me is chaos, not warrior.

But now things have calmed down and I feel less spiny. I have forced myself to stop comparing my life to everyone else’s and just focus on my family. It's helped me realize that my family IS making it. It’s not easy and it’s incredibly stressful but we are, and I do have major support from my family, and I mean MAJOR! They care and love all of us, and are truly selfless, and it just helps me realize that we are NOT alone in this.

Lily is doing so much better. She has started her second interim maintenance and gets 2 different chemos every 10 days. They up the dose of one the chemos by 15% every time. I know a couple of adults that have taken Methotrexate, which is one of the chemos that Lil takes, that is just makes them feel absolutely horrible, but Lily is so resilient! She sits on the couch for a day and then is up and talking and laughing and happy. She complained of a headache 2 days after her treatment this time but other than that no real complaints. All her tests and ultrasounds show no more liver disease and good enough blood counts to feel confident to move on with treatment. We have another appointment next Thursday and will check counts again.

I guess what I've learned over the last 2 months is not to judge myself based on what everyone else is doing. I learned not to judge others during the first month of Lily's treatment but I never really thought about myself. (shocker!!!) Self-criticism has been a battle for me my whole life, but now I'm truly starting to understand that everyone has their own battles, and not all wars can be won fighting with the same strategy. I've decided that I will keep my house healthy, but I cannot beat myself up if it’s not totally spotless. I will try to eat healthy and exercise, but I can’t hate myself for gaining a few pounds when I'm stuck in the hospital for 13 days, or have hospital appointments 2-3 days a week. I have to try not stress if a bill doesn't get paid exactly on time, because I have trust in myself and my husband, that just like always, we will find a way to pay it, eventually. So I guess for my sanity I have to focus on my full my time job which is to get and keep, Lily and Makinlee healthy, no exceptions. After that I can focus on my husband, my home and finances, and then myself. Now I know what most of you are thinking and quite frankly I don't want to hear it. I know I need to take care of myself or I can’t take care of anyone, that I fully understand, but that frame of thinking just proves my point in all of this. I have started to figure out the order of priorities I have to have in order to keep my life grounded and organized. It may not be everyone else priorities, but it is what is going to work for my family. Okay having said that, I am going to still take care of myself. I know I need some time away. I know that I need to spend some time each day/week/month where I can just relax and focus on myself and believe me when I say I am so willing to do that. I just know that I can justify putting myself  100% first, second, or third, all the time when my attention is desperately craved elsewhere. I have to find balance. 

I know that whether you have sick kids or healthy kids, sick parents or healthy parents, or sick friends or healthy friends, everyone goes through stages in life where one day you have your shiz together and then then next day it has hit the fan. Lily having cancer doesn't change that for me. It just changes the degree at which I have learned to appreciate and understand the lessons that I will learn this point out. Now, again, having said that, the next lesson I've learned over the last few weeks is selflessness. I personally haven't mastered this lesson at all. I know this because I’ve learned it from all the people I know and love, and even some people I don't know, that have given to us in our most desperate time of need. I can’t even fathom that at 10 years old, or while having to provide for a family of seven, that some people have truly seemed to have mastered the extremely rare gift of complete selflessness. I am extremely humbled to have such an amazing family. I hope and pray one day I can help return the blessing to them that they have given to my family. I truly believe in karma, and I know they have amazing blessings coming. Thank you to Matix the whole Hull family, and all her friends, for all the support, and thank you to Jami and James for the incredible bailout, and ultimately the start to my new trust in life and humanity. I love my family, and not just the family I live with, but with my many parents (blood and marriage), my many brothers and sisters (blood and marriage), and my friend family that has been the constant life support that we have needed. Without you I can honestly say that the Ross family could not have made it this past 2 months without you. Thank you for giving us everything you have, including one of the most precious gifts that a desperate family could receive, Hope. 

Finally Home

So I have been super slacking on my blogging this last 2 months, mostly because I have been at the hospital and haven't had my computer. But I also think that I haven't because its hard to only write bad news. Now that Lily is officially done with Delayed Intensification I'm praying for no more drama! I think that everyone in my house is ready for things to calm down and go back to whatever normal is. I don't want to dwell too much on what happened in the hospital because its still so stressful to think about, but I will give you the short version. Lily was taking an oral chemo (Thyoguinine or 6TG) in her last treatment phase and it caused her to develop a very rare but potentially serious liver disease called Veno-Occlusive Disease or VOD. Its basically where the little blood vessels inside your liver form little clots that wont allow the blood to flow properly. If the blood cant flow through it than the liver cant accept any fluid to flow through it and filter out to the rest of the body. We took her into the ER initially for dehydration and they kept her one night, gave her 24hr of IV fluid, and sent us home. The next morning her stomach was very engorged and firm so I took her back in. All the IV fluid that they had given her just resorbed into her abdomen where it was just sitting and unable to be used by the body. An ultrasound was done to confirm her VOD diagnosis. After we knew what we were dealing with her Drs had the task of doing a large fluid shift in her body. She was given a diuretic to block sodium at the bottom of the kidneys, then she was given a protein which sucks fluid into the blood vessels and then another diuretic to flush everything out. After three days of this she was able to loose over 6 lbs of water weight. Lily only had a moderate case of VOD and still doesn't have 100% normal liver function but the VOD did reverse its self and shouldn't ever be a problem again. It took about a good week in the hospital before we really started to get some positive responses form the Drs that the VOD was reversing permanently. On top of all that we also had to deal with Cdiff which is a contagious bacterial infection that you get in your gut. Most likely Lily got it from taking so many antibiotics for so long. So she was put in isolation at the hospital which means no visitors from other patients, no playroom, and if we left our room she wasn't allowed to touch anything. Fortunately her Dr. felt bad for us and said that we could do outside! That was so amazing. One of Lily's friends actually brought her a huge bag of 'Frozen' things, stickers, place mats, coloring books, and her favorite thing a singing Ana dress. She put it on for our trip outside and stood on the grass and sang to everyone at the hospital. It was so adorable.

Okay so I'm just so glad to be HOME!!! We went back to clinic yesterday and they said that she wasn't quite ready to start the next phase of treatment yet so we get a week off and I couldn't be more happy. This is going to be a week to play! We have been cooped up for so long we just want to get out and enjoy the weather!

With all the big and little complications that she has had lately we are really understanding how lucky we have been up until now. I am very hopeful that we have gotten all of our big drama out of the way now, and things will be smooth sailing from here on out. We truly appreciate all the love and support we get from all of you and I'm really hoping that my posts from now on can be fun and uplifting!

Lazy and Unstructured

I came to the realization today that life is nothing at all what I would have planned it to be. I suspect that at some point everybody will come to this realization in their lives but for me, it was still a shock. I was standing in line at Winco to buy a few groceries and I realize I'm wearing yoga pants with yogurt stains on them, a cheap tank top, and my hair is a humid frizzy mess. Makinlee is also covered in yogurt and somewhat causing a scene rocking back and forth in the cart yelling. Then I have my tiny bald headed 3 yr old wearing a bright pink hat, a medical mask, and brown cowboy boots, with a white tank top that unintentionally allows her port access to hang out and black sparkly leggings. Let’s not forget about my husband, wearing his basketball shorts and flip flops which I don’t usually associate with being too informal, but somehow it seems less organized when you put everything together. Now honestly, this is not untypical for my family, but as I look around the store, I'm realizing that we are the people in line that most others (including myself in my pre ALL life) would have judged me as a lazy and unstructured mother. I realize at that moment today that my life is just that, a little lazy and unstructured. Allow me to elaborate...

Lazy; having 2 kids in diapers, (one of which has recently discovered that she can move around pretty quickly and that its fun when mommy has to chase her naked bum around the house) It’s not uncommon to find dirty diapers laying around the house in places other than the garbage can outside.

Lazy; when you do 2 weeks’ worth of laundry in 1 day but don’t get around to folding it so you spend the next week digging through the clean cloths piled on "the small couch"  until laundry time comes again and you decide you really should finally fold the laundry from the previous week.

Lazy; when you are so busy during the week that you eat out like 3 nights in a row because you are too exhausted to cook and subsequently don’t do the dishes the entire time thinking that since you didn’t cook dinner the dishes "aren’t that bad" and then when you finally do the dishes its 2 dishwasher loads full, which then again prompts the urge to eat out having just cleaned the kitchen and having gotten all the dishes clean. Vicious cycle

Lazy; putting chicken nuggets in the oven and cooking peas in the microwave for lunch because you are so ready for nap time so you can just sit after being up most of the night with a sick child. But then the guilt sets in that you are sitting on the couch instead cleaning. Refer back up to the laundry and dishes.


Unstructured; spending 13 nights in the hospital. Need I say more?

Unstructured; Coming home from said hospital stay and everyone in the family (besides our daddy who goes to work) sleeps in until 10am, takes their nap from 3-5pm, (excluding mommy) and then stays up until 9pm. Mommy is usually up well into the night. I think it’s got to be an actual syndrome, mommy-is-exhausted-all-day-until-the-kids-go-to-sleep-and-then-she-gets-a-burst-of-energy-so-is-up-all-nightitous.

Unstructured; going to the Dr. at least once a week and planning to spend all day there because the appointments can take anywhere from 2hrs to 6hrs easily.

Unstructured; having to go into the ER for every concern that comes up during nonclinic hours for something even as little as a minor rash, to UTI symptoms, to an unknown fever over 100.5 while neutropenic. Also expect either blood and or urine samples every time and it’s probably best if you just keep an overnight hospital stay bag in your car because its quiet likely that once you go in, its 2 days at least before you get out.

Unstructured; planning your day around having to give IV antibiotics at exactly 12:10pm because it takes an hour to go in and you have to give chemo at home at exactly 1:15pm and you dent want to have to give too much heparin (anti-clotting agent) through the port. Which is especially hard when you have an appointment with one specialist at 1pm one day and a different specialist at 1:15pm the next day.

Unstructured; giving your baby a bottle in bed (despite your best judgment and knowing the negative health risks associated) because that’s what she has gotten used to and sometimes you just need to focus on the steroid raged child in the living room and knowing you can only do that if you put the baby down for an early nap.

Unstructured; The million mixed emotions you feel as you take your 3 year old daughter to get her head shaved while she sits on your lap screaming, or to know that you are taking her to the hospital to get a lumbar puncture with intrathecal methotrexate and 4 other new chemotherapies and other drugs that are simultaneously going to make her feel exhausted and nauseous for days but also allow her to live for years.

You read all those facebook posts that say "enjoy every single second of life cause you never know when it will be your last!" (Which I fully agree on in so many ways) But also make me so sad because the thought of my daughter spending the last years of her life being spent in DRs offices being poked and prodded constantly, having no hair and not growing at all while still losing weight, and her having to miss out on normal 3 yr old activities like preschool and dance class makes life hard to enjoy. I prefer to miss those moments. With September being Childhood Cancer Awareness month I am even more emotional. We are 4 days shy of 6 months of treatment and I still feel so new at all this. Honestly the last 6 months have seemed like years and counting. But then I look at Lily. Strong, resilient, polite and ridiculously smart and its then I realize I have the duty, and honor, of calling this amazing human my daughter. Then I look at Makinlee. I peer into her piercing blue eyes, and see her humor, resilience, and forgiveness for the inevitable lack of attention she has to work through. I know with Makinlee it’s even more important that I show her how much I love her.

I honestly know, despite the fact that Lily is so torn apart from her friends, that I have to fully accept that this cancer situation isn't going away! I know I have to hit this thing head on. IT"S NOT EASY, but as parents it’s the only choice we have! So I guess if you are going to judge me for my house being a pig pen, or my whole family’s clothes being dirty when we are out grocery shopping, or my lawn not being mowed just go ahead. But I know that we are mostly just in survival mode and usually on the verge of laughing so hard you cry, which then turns into real sobs, or just going just completely crazy (and then no one is safe). I guess my point is I don’t have the time or energy to make my whole life the happy fun charismatic life I used to have, we are too focused now. But I will continue to smile. I will continue to laugh at funny movies and plan pranks and breakfast-in-bed for dad that gets to sleep in. I will still enjoy making Halloween cookies and shopping for a costumes, I’m still excited to sit at Thanksgiving dinner surrounded by family, and I will still get giddy while figuring out what gifts to give Lily and Makinlee from Santa that give them real hope.

I guess my goal this next month is to keep the hope and trust everything will get better. I trust life will send us down the right path and when this is all over, we will be a stronger family and love more deeply.

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

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!

A week away from the hospital? Yeah Right!

So today we spent 5 hrs in the ER for Lily having a UTI. I'm not totally surprised that she got one with her Chemo and everything but 5 hrs? Really? UGH! I thought we were going to get a break form going down there! Other than that she has been mostly doing great! She has some nausea on and off and still doesn't have much of an appetite but she will eat some things and is happy and playful. I haven't given her Zofran for a couple days now. We are thinking right now take chemo, give her 3 days and shes manageable :)

I, of course wanted to give the update on Lil, but really I wanted to talk about Lyrics 4 Lily. WOW!!! I am so overwhelmed with the generosity of the people that came to Lils benefit concert on Friday night. Not only was it an amazing show (really we had the best night!!) but everyone who came was so generous and selfless. Before the show even started we got a pretty large donation from someone we honestly dont even know, and getting that just made me cry. I got in the weirdest mood after that because I was watching all these people come in and I was just thinking why are you all here? How could you care about my family? I was feeling pretty overwhelmed. I was planning to give a short speech at the beginning of the show and when it was my turn to speak I got up there and looked down at everyone and I introduced Jake and I as Lily's parents and as soon as I said Lily everyone just started clapping and it was then that I realized, they are here for Lily. I have found a group of people that love Lily so much, without even knowing her, that they have given their lives for the night to come support her and I just got this sense of peace. I knew she was loved but this is what I have been looking for, a community family. Its just so incredible. So I gave my little speech and we started the show and I had an amazing time. I made some new friends, and I know in my heart I will never forget that night. I will never forget how it felt to have everyone supporting my daughter. It just makes me want to fight harder!

Again I cant even say enough how appreciative we are for the generosity and selflessness we have witnessed this past weekend and Jake, and I, want everyone to know that we are just humbled to tears by the way that OUR community has come together and supported us. A special thanks to Griffin House, Illumneye Crew, Dedicated Servers, The Earthlings, Arcturus the Architect, Landon Wordswell, and Mostafa for coming to perform! You all really put on a really great show!

I really had a great night Friday and I hope that we can all hang out again and Ill try to keep everyone updated on Lily.

When I say Lyrics 4, you say Lily,
Lyrics 4
Lily
Lyrics 4
Lily
:)

Have Friday Night Plans??!

I am excited to update that we have started phase 3 of chemo!!! That means for the next 60 days we will go in for chemo every 10 days (or as close to that as we can) and do 2 different IV chemos. Every time we go in they up the dose of chemo 10%. So far Lily is handling everything pretty well. Yesterday was her first first dose of the treatment and last night she woke up screaming and just writhing. After about a half hour I was able to force her down some Tylenol and Zofran (anti-nausea) and she was able to sleep after that. Last night again she was having a hard time sleeping and I'm needing to give her pretty much a constant flow of Zofran. But during the day she plays, and walks around and laughs so so far it seems nights are when I hits her the most. 

The other great news to report is her blood counts. Last week her neutrophils were at 450 and this week they were at 1050, which is a huge improvement!! We  are so grateful to see that change. It was a little shocking to me that her counts could change that fast but it was a welcome surprise. Next week we dont have an apt so we are excited to take a break from going down to MSTI, even though we do have fun there, but a week to recoup will be nice.

In the meantime we have a couple other things going on. Tonight, May 29th at the Crux Coffee House in Downtown Boise, there is a benefit concert that was put together by a friend of Jake's

in honor of Lily. I still cant believe that people care enough to take time out of their own busy lives to put this together and preform! We are so incredibly blessed to live in such an amazing community and have such great friends surrounding us. The doors open at 7:30 and the show starts at 8:30. It a $5 dollar minimum donation at the door. If you cant attend but still want to help there is still a GoFundMe site for Lily  http://de.gofund.me/owa6lw and also a place where you can buy a T-Shirt for Lily.  https://www.booster.com/orangeforlily 

We are normally pretty humble people and we have mostly been able to support our family but with this rapid change of lifestyle and me suddenly having to quit my job its been so amazing to have such support and help from everyone. I wish there was a way to thank everyone personally but again I just want to say a genuine thank you for all the money, letters, birthday cards, gifts, and get wells that Lily has gotten. It has been a real moral booster for her, and taken a lot of stress off of Jake and I. 

We hope to see everyone at the show tonight that can come and for everyone that cant we just appreciate the support we have gotten. 

I hate waiting.

 Today marks the first day of what was supposed to be the start of phase 3 of Lily's treatment. Phase 3  for Lily is going in to MSTI and getting 2 different forms of chemo through her port every 10 days for 60 days. In order to start phase 3 her blood counts have to be at a certain level. (Her neutrophils). Last week her neutrophils were around 1475. If she goes under 500 they consider her neutropenic and she is very prone to getting an infection. That would most likely mean a hospital visit if she got sick. They wont start the chemo in phase 3 unless her counts are 750 or higher. Well yesterday her counts were 450. She dropped like 1000 in one week! Ugh. This is a huge disappointment for me. Having to postpone treatment for me is like  holding up a big sign that says, 'Hey everyone, my daughter has cancer but I'm not doing anything about it at the moment. Take that world!' I've realized that this whole waiting game just gives me major anxiety. I don't AT ALL like just sitting around. I need to feel proactive to keep my sanity. I know that the Dr's are experienced and do this because its what is best for Lily and to be fair they did warn me several times that this could happen. But, I just didn't really prepare myself to get sent home because she had been doing so well!

Maybe I jinxed her because for the last couple weeks I have been thinking that we really got this cancer thing. She has almost gotten back to herself physically and in her personality. It just kind of puts things back into perspective for me. Lily has been doing so well, she hasn't been sick, she still has lots of hair, and she has been mostly happy. This last week though I did start to notice a small difference in her behavior. She seemed more tired and upset than usual. I guess that is what is so scary about this disease, with all the meds, and just the disease its self, things can switch rapidly with not much warning.

I guess the blessing with this whole thing is Lily doesn't know any different. She knows shes sick and she knows she is special, but she doesn't realize how sick and she doesn't realize how rare this is for kids. This is her normal, her reality. And can I just say how amazing Children's MSTI is! She goes to her appointments and she gets to do crafts, play with toys, and gets a different prize every time that she gets her port accessed. They give her a golden coin that she puts in what looks like a quarter candy machine and she spins the nob and gets a surprise toy. She totally loves it there, and that is amazing.

I guess this week my goal is just going to focus on keeping Lily away from germs, and forcing time to let her rest and relax. Hopefully then her body can rejuvenate and be ready next week. I guess the best thing for Lily is for her and I to go to a spa and for us to get a massage and pedicures. Its for Lily's health. It just must be done ;).

Ugh.

So I started this post on the night of mothers day. I let it sit for a couple days because I was debating whether I really wanted to post it or not but I decided that I was going to. The debate in my head was "well this really doesn't have anything to do with Lily", "but when you read the title it says MY lessons learned" and although its clear I'm still trying to figure this lesson out I figured that I should post it and here's why:

Lily had a photo shoot the other day, it was very casual, but it was by an amazing photographer that loves taking pics of disabled/special needs kids. When we first got there she was asking me all the questions about how we found out about Lily's Leukemia and our journey to this point, so I told her the story. (She of course likes to get background on her kids, and I really don't mind talking about it) but you know its kinda funny, I've noticed at this point, that I can almost play out these conversations in my head. They all ask the same questions, and then I answer, and their responses are mostly something to the affect of, "I would die if found this out." or "I don't know what I would have done if I were you" or "you are so amazing to be handling it so well" but he truth is, this is my life now. I don't have a choice. I don't get to decide that I'm not going to handle it or, I'm not going to deal with it. But, having said that, I do feel it's important for everyone to see that I'm not perfect, and that I don't wear this Wonder Women cape (that Lily does (thank you Anne)), I'm just a normal person that can break down and loose her marbles too! I have my doubts and I have my questions and I cry my self to sleep on bad days just like everyone. But, when I wake up I see the beautiful face of this amazing 3 year old, and this outgoing 9 month old that I have the honor of laughing with and playing with, and my days are really great.

I made this for my mother-in-laws and myself for Mother's Day and for me its a just a reminder that beautiful things can/will come from what seem like ugly things. :) And again there are so many people in my life right now that help me through the hard times I just want to say thank you for all the love and support. You are all amazing!!!

Now on to my Mother's Day moment of weakness....




Okay first I want to say to that this is a post about me feeling sorry for myself if I'm being completely honest. I would also like to say that I love being a mom and even with everything going on honestly I wouldn't change that EVER! I would never give that up. But lately, I'm kind of back to that super overwhelmed, can't sleep, in a fog phase again. Lily is doing so well, and she is happy and energetic, and so full of LIFE, but I'm still just inching toward the edge. Please don't misunderstand I am so lucky that she is doing so well and I cant even think about the alternative but I guess I'm having a moment. Mothers Day, for me, is hard enough!

At chemo last Wed. Lily slept for an extra long time and we got talk to the nurse for a while. She said she has been a nurse for over 30 yrs working in nursing homes, maternity word, and pediatric intensive care unit (PICU) where we were. She said out of everywhere the PICU is what she loves the most. The kids bring so much life to her job but when things go bad its also the saddest of all her jobs. But its just like everything right? You cant feel real joy if you haven't felt real sorrow?

Okay so here's what I cant figure out! I truly believe that everything happens for a reason. But I'm still trying to understand why my mom died. I would understand her getting cancer and surviving so she was able to help me understand Lily, but what good does her dying do when I was barely old enough to remember???! I know there is a connection somewhere I just cant figure out what! I guess I'll still just have to search to find the answer. I hope that someday I will.

You learn something new everyday

Lily had her last spinal tap of this stage of treatment. That makes 5 weeks in a row that she has had one. :( Poor Girl. Her blood counts are looking so good, still well above normal than what they like to see so that is amazing. I wont know this for sure until the end of this month but it seems like the next phase of treatment is out patient chemo at MSTI (Mountain State Tumor Institute) every 10 days for 2 months. From what the Dr. was saying I think this next phase of treatment is going to be a little bit more intense than this stage has been.

Lily has been doing so well at home. Nights are hard because she does have a hard time sleeping but I give her her chemo at night right before bed so it seems to be because of that. But during the day she has energy and wants to play. She is funny and sassy and bossy and I just love it. Her Dr. yesterday said that he could tell she had an extra dose of feist in her. Boy was he right!

Okay so on to what I learned. I have a friend who's sister-in-law has cancer right now also and she started treatment about a week before Lily. I am sad to say that she is not doing very well. The chemo is kicking her butt! She has been in and out of the hospital with extremely low blood counts and they have decided that they need to dial back her treatments because of it. The crazy thing about all of this is that her and Lily are getting the same dose of treatment!! The biggest reason why Leukemia has such a higher cure rate in children is because we can pump them full of chemo and they just blow it off like its no big deal. In adults it just wipes everything we have out. I was amazed to learn this. I can not tell you how grateful I am that Lily is able to handle everything so well. I really expected when she was diagnosed that she was going to spend the next 2+ years of her life sick and weak, because that how most adults I know get, but I couldn't have been so wrong.

How amazing are our children! So pure, and innocent, strong and courageous they are! I wish I had half the courage Lil does. I thought at first that I had to stay strong for Lily but now I know that she can handle her own and half the time, I gain my strength from her. So this week I learned that its okay to look to your children for strength sometimes too. You have to be there for each other, and even if they don't know it, they will give you that boost when you need it.

New Perspectives

So I have a couple things to talk about today. Lets start with an update! Lily had another spinal tap on Wed with chemo in her spine and I'm still giving her an oral chemo at home daily. Her blood counts are looking so good. Everything is looking normal for a healthy 3yr old so that is amazing. She has certainly gotten her spunk back and I will never again take for granted how much I love her sassyness. (okay, talk to me in 10yrs, I reserve the right to change my mind). She has so much more energy and she is starting to look like her old self again. She has lost some weight and gained back her sense of humor. Last night Makinlee was in her jumper and Lily decided to go in the kitchen to jump with her. She jumped (very awkwardly) for about 5 jumps then stopped and looked at me said "Oh man, jumping is harder than I thought." I lost it. It was so funny how she said it. I am just so glad that she is back!!

Okay lets talk side affects. First off the hair. It is rapidly going bye bye. She had pretty thick hair so even with how much she has lost she still has a lot but I can get out a lot at a time if I try. Its not coming out in chunks yet tho so we still have a ways to go. The other night in her bathtub when I was washing her hair it was just kinda everywhere so I balled it up in my hands and stuck it to the side of the tub and gave Lily a squirt gun and she loved the game of squirting water at it to make it fall down the side of the tub and fall in the bath water. She kept asking me to get her more hair so she could keep playing. She had fun with it.

Mostly right now we are having great days but at night things get really hard. I give her her chemo at night and I try to get her to go sleep right after but it doesn't always work that way. The last couple nights she has woken up in the middle of the night just screaming. It takes me about an hour to get her calmed down and back to sleep. She just writhes in pain and says ouch it hurts and no matter what I try to do to help her it just makes it worse. I haven't quite figured out yet what hurts. Sometimes its her legs, sometimes her belly, sometimes her head, I really think its just everything. Its just one of those times through this that I just feel so helpless. I know she is hurting and I want so badly to help relieve her pain and this burden but I just cant. Its really sad. I am just so glad that during the day she is okay. At least at night she mostly sleeps through it.

Lily and I talk about my mom a lot. I have told her that my mom got really sick and couldn't get better so she died and became and angel that watches over us and helps comfort and protect us. She feels so proud that she has a grandma that is an angel she just lights up whenever I talk about it. Today being May 1st and marking 14yrs now that my mom has been gone I was talking to Lily about her this morning. I of course was feeling sad and thinking ugh I hate this day, but when I told Lily that today was the day that her Angel Grandma died and became an angel so got the biggest smile on her face and got so excited. I think I can honestly say that this is the first time that I have told anyone that this is the day my mom died and they smiled. But you know what I was a little refreshing. I know before my mom died that she was in so much pain and so sick that leaving that behind was a blessing for her. But still I always think of this day as how horrible it was for me and how sad I am, but once again Lily has shown me things from a new perspective. She saw it from my Moms perspective and was happy and excited for my mom, that she got to feel better and get her wings on this day. Of course I will always be sad on this day in remembrance of my mom and all the things she has missed but I have decided not to let that ruin my day every year. Lily has shown me that this isn't about me (yeah it took her getting cancer to show me that everything isn't about me ;)) but its about my mom finally getting rid of all her pain and sickness and being able to go to a better place to watch us grow and learn pain free! I am happy that she didn't have to suffer anymore. I cant say that there wont be days that I cry cause I miss her, or that I wont still have days where I'm angry that she is gone, and sad that she has missed so much but I now have a way to get my self feeling better and I have Lily to thank for that.

Lily is in Remission!!

Yay we are so happy to report that Lily is officially in remission! Basically that means that in her blood smear they cant see any visible leukemic cells. They know that there are still some leukemic cells in her blood that they cant see so they sent her blood to Seattle for further testing and the results show that the amount of leukemic cells she still has are within the normal range. This is such good news because since she has responded so well to treatment so far it hugely increases her chances of not just survival but also increases her chance that she will never ever get this again!

She still has over 2 years of treatment to kick this thing for good but we are once again so hopeful that life will some day return to normal. This next phase of treatment is 28 days. She went for a spinal yesterday and 2 rounds of chemo. The next 2 Wed she will go in again for spinals, and then she has a week off. I also will be giving her an oral chemo here at home for the next 28 days.

So far she has been so happy since getting off the steroids. She is really starting to act like the Lily I remember before all this sickness started. I can see the love she has for her sister, and the love Makinlee has for her. They will finally play together and Lily can always make her laugh. Lily is also quite the helper these days. I'm sure that fact that she is doing chores to earn money to buy a kitty purse has nothing to do with the fact that she will do any chore I ask her to do. :) She has also become quite the artist. She loves to paint and color and actually has the attention span to just sit and color for hours.

We truly feel blessed this week. We can not express to everyone how grateful we are to have such amazing people in our lives. There is too many people to thank everyone personally but we are so grateful for all the gifts, and cards, and donations that we have gotten. We know that all the prayers are working and cant thank you all enough. We still have a long road but we are ready to face the challenge with all the support we have. Today is a GREAT day and I know there will be many more to come!

She's Coming Back!

Lily has only been off her steroids for 3 days and already she is returning to her old self. I am feeling so blessed that she is returning so quickly. She still doesn't look like herself but she is laughing and telling jokes and I can finally see her inside there again. She has been helping me around the house again and she will even play with Makinlee! She still asks for snacks a lot but now if I tell her no she doesn't scream for hours if I don't give it to her. (Oh hallelujah) Even over the last few days I have noticed her belly going down and she will walk. She hasn't wanted to walk anywhere for months now so this is kinda huge. Its baby steps and at this point and I am so okay with that.

As far as her treatments or condition I wont really have any new info until Wed. but her blood counts are showing consistently now that she is maintaining red blood cells, and staying normal with her white blood counts so we are hopeful by this news that she is accepting treatment!

I just wanted to say thank you again to everyone that has helped get us through this last month. It was much more difficult at times than I ever could have imagined or expected but with the love and support of everyone we were able to make it through. And of course a special thank you from Lily for all the birthday cards! They really have brightened her days with all the "special mail in her name". Its been a great distraction for her so thank you. We are happy and once again having fun and able to enjoy life!