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.