We told Liv she would likely loose her beautiful golden hair. We didn’t say it that way of course J but said it would likely thin out and maybe it might all fall out. We discussed fun wig options or bandanas and scarves and tattoos and how creative we could be with it all.  She cried, and cried, and accepted it by being a big girl, and then cried some more.  DaddyMax explained the science behind it and how the Chemo attacks growing cells and hair is rapidly growing so it is affected as well. It broke my mommy heart in two pieces to see her cry and I wish I could shave my head so she won’t have to.  Fuck Cancer.

We had mommy and Liv day Saturday and it was awesome.  Jet and Max had an ALL day soccer tournament (thank you DaddyMax!) and I was secretly happy I didn’t have to join in this one ;-) Also felt slightly guilty about it. Ugh so many emotions.

We went to Scripps Aquarium which was her choice.  She loves the sardines in the front entrance and the super big eels that are sorta scary. We saw a huge turtle and tiny sea horses and a few new exhibits we both loved.  We took some fun photos and then of course ended up in the gift shop where we got new socks for Max and a dissolving egg for Jet and a pretty starfish necklace for Blu. We then had smoothies and just talked. She put her tiny hand on mine and said “Mommy, I’m actually really scared” to which I choked back my instant gush of tears and told my sweet baby girl “I’m scared too…but it WILL be ok” Rip my heart out.  She then asked some questions about whether kids would make fun of her with no hair, and would she see any of her friends and more importantly would the Chemo hurt.  So much to take in for such a sweet baby girl. I’ve never been more angry and frustrated and pissed that I can’t fix this for her. I’ve been a mess for the entire weekend and I’m having a really hard time holding it together because Chemo starts Friday and while Max always thinks positive and rolls with things, I get pissed because I want to fix it and I simply can’t.

Sunday Liv wanted ‘Daddy and Liv day’ so Max being Max took her to Cool Creations for ceramic art painting and ice cream. Jet got to hang with Damma (my mom) and get spoiled rotten after his soccer game. They had a blast and both kids got full attention and love and hopefully their little tanks are full with love and confidence for the week ahead.

My sister in law, Erica called and finally having someone who supports me to no end and never judges and just accepts me,  I came undone and I lost it. I cried and ranted on the phone to her for a solid 45 minutes. She listened and comforted me and helped me understand I am doing all I can and its ok to just unload once in awhile. God bless her because I feel a thousand times better. Sometimes you just need a good hard cry.  (right K. Wood?)

I am thankful I have that outlet and know Max needs it too although I think harder for men.

Our friend Frank stopped by and even after a really long, really emotional day it was a nice break for Max to hang with a buddy. Frank is an excellent photographer and sent me a photo while we were in the hospital of a flower with a tiny, tiny egg on it. I showed it to little blu and she instantly said “is it a butterfly egg?”  Well tonight Frank showed up with it printed on a super cool metal frame. It will hang in her room forever J

We are so thankful for our neighbors (Brianna and Kris came to the rescue with some shopping I needed to do, and pizza and even made smores which Jet and Liv got to enjoy) We are so blessed with so many people who care so as I head to bed bone tired and very, very, weepy (that time of the month must be coming soon because I am a mess) I am happy and filled with love from everyone who has made the effort to send notes, cards, food, donations to Liv’s GoFundMe page and just be present when needed.  Thank you all. 

Liv is enjoying all her art supplies people sent :-) 

 Off to bed..... xoxoxoxo Carlie 

Chemo Schedule is Set

We've got our groovy backpack and are ready for Choo!

Today we met with Dr. Choo to get our official Oncology diagnosis and to learn about the treatment schedule ahead.  They've given her the status of Stage 2 Wilms' which is the absolute best of a worst case scenario.  This also means that between the two standard treatments associated with her diagnosis (EE4A = mellow vs DD4A = not so mellow, for those that may care and/or are in the know) we will be getting the less toxic and more mellow (a relative term) chemo.   We will be starting the chemo a week from tomorrow.  (We also learned that the tumor was over 900 grams... that's nearly 2lbs!!)

The treatment goes in 3-week cycles with the first session of the cycle being the heaviest dose.  There will be a minimum of 7 cycles so were looking at 6-months of treatment.  Dr. Choo made the point that there is absolutely no chance of completing the treatments faster than that but there are many, many reasons that treatment could get delayed.  The quick reason as to why things may take longer is because before every "big dose" she gets blood drawn to check her platelet levels and if they're too low for her body to accept the chemo then they'll have to postpone for at least a week.  If we start stacking too many of those days together we could be looking at March before Liv can get back to school.

Dr. Choo then started to tell us about the side effects to be prepared for.... :-/  Chemo targets all "rapidly dividing" cells in the body, because that's what cancer does, but guess what else rapidly divides?  Hair.  She said that we can expect to start seeing hair fall out in the first 3-4 weeks after the initial session.  However, she also made the point that every child/body is different in its reaction to the chemo and that, on the scale of possibility, she may lose very little hair or she may lose all of it.  For me (Max) that gave me hope because, for those of you that know Carlie, these girls have some serious hair!  Still, the thought of combing out her hair (easily the highlight of my day) and seeing chunks of hair in the comb is terrifying.

We also learned about the things to be on the look out for and situations we'll need to avoid.  Another rapidly dividing cell factory is bone marrow, which churns out both red and white blood cells.  This means that exposure to crowds is a potential disaster hence the "no school" but this also means no movie theaters or other public places.  Fever is the biggest "oh no" sign to watch out for.  While the fever may be caused by just a common cold, they can't take the chance that it's a bacterial infection of some sort and as such, we should expect to be hospitalized for at least two days as she receives IV antibiotics.

Needless to say it's going to be a long 6-8 months but here's the thing... It could be worse.  Sure it sucks and we'd give our own kidneys (and more) just so Liv never had to feel an ounce of this pain and inconvenience but the reality is... this is our new reality.  This is our new normal.  I am confident that there will come a day that we'll look back at this experience and use phrases like, "remember when..." or, "man that was a crazy time in our lives!"  We certainly aren't the only ones who have a lot on their plate right now.  We're fully aware that things could be much worse and in some ways we take solace in that.... but damn it if it doesn't feel like a lot sometimes.


I love her ;)

"You're not funny, Max.  In fact, I'm now dumber for having listened to you."

Liv Blu Update :-)

Carlie here....a lot has happened but at the same time,,not a ton if that makes any sense?..Liv is doing great :-)  Her wound from surgery is healing amazingly well.  I haven't been able to get all the tape off her tummy without many many tears (please someone make a post surgical tape that doesn't remove skin and doesn't make kids shed a zillion tears when it needs to come off!!)  but, we are getting close.  I think this has been worse than the surgery itself in Liv's eyes!

She is playing with friends, she has even done a few half-days of Art Camp (not to much active stuff but making jewelry, drawing and crafts which she loves).  It gets her out and allows her to be social which she so desperately needs.  Her BFF Brylie came for a playdate and she was in heaven. Aren't girlfriends the best?!

She did lose her first tooth and, in total Liv fashion, instructed the Tooth Fairy to NOT take her tooth as she wanted to keep it. Yes, this is my child and should not surprise me yet she does!

Jet is doing well although I can tell this is a lot for him.  In some ways it is good- he is now packing his own bag for soccer and being more responsible for his own things.  He wants to help me unload groceries when normally he jumps out of the car and races inside- he is trying and his efforts touch me as a mom.  I can also tell he picks up on the changes and the stress that Max and I feel and, being the absolute love that he is, he wants to fix it all for us. I could not love these little humans any more.

He is being such a great brother, taking care of her, putting up with the special needs she has, taking in all the gifts and cards and understanding why he isn't also on the receiving end :-)  It's gotta be hard at 9 to understand it all and he is doing amazing.  Jet is the BEST.  He has been fortunate to still maintain his activities such as soccer and camps. Max, being the amazing Dad he is, is still assistant coaching his soccer team :-)

My mom is helping a TON.  Really....I don't even have the words.  She cooks for us, picks up the kids, walks our dogs when needed and sometimes, just listens and understands when I melt down and cry for no apparent reason.  She has been and always will be, the rock of this family.  She just always seems to know what is needed, when it's needed, and is there.  I'm so grateful.  We are all grateful. She is dealing with her mom, my grandma, being ill and it sometimes seems like things have hit at once.  I know there is a reason and we will come out stronger than before!!!

Liv's BIG appointment, is this Thursday.  We will find out the details of what is next to come.  I am anxious and also really want to run and hide and not deal with any of it. ugh. :-(   We will learn about her chemo schedule for the next 6 months, all appointments, what she will feel like, how sick she will be, when her hair will fall out, what to feed her, etc, etc.  Max and I have had both kids almost all summer. With Liv's hospital stuff, we have had her full time.  The schedule will soon go back to them splitting time between home and their biological dad's house.  This is a massive stressor for me as I've always had the kids when they've been sick and the thought of not having her 24/7 while she deals with this is almost to much for me to bear.  I am in tears just thinking about it.  While I'd like to unload on this topic, that's all I can say really so I will leave it at that.

It all seems totally overwhelming and I really want to run away from it all. Me and Max, take the babies and the fur babies and just head to Mexico.  Eat quesadillas and drink Pacifico's and ride it out. lol. Yeah, that ain't gonna happen but I can dream right?  This is a time when I am grateful for so much but I am also hating many things that are out of my control.  Giving up control is hard for me...ask my (amazing) husband ;-)  I am going to learn alot about not having control through Liv's ordeal and I'm not going to like it but it is what it is.... grrrrrrrrrr

Max continues to be her favorite person in the world. "will Max pick me up?", "Will DaddyMax put me to bed?", "When will Max be home?" He has this way with them that I will forever be thankful for.  For loving these babies, for taking care of me and still being Max.  He was sent from Heaven and I have to accept his amazing gifts.  They have snuggles each morning and this baby has never felt more love.  As a wife I am trying to take his needs into account but honestly, the focus has been on the kids and I need to make more of an effort to take care of him as well.

The love and support continue to flow her way and we are again, so grateful for everyones love. Not much else to report for now, will update after her big appointment this Thursday. I love you all! Some random photos of this past week!

Not totally sure who dropped this off on our doorstep but woke to wine and cupcakes today- Sonia????? All of it will be enjoyed!!

xoxoxxo Carlie

Oh, and the pets are feeling neglected......

...

Pathology Report is In!

First, sorry I've missed the last few days!  I've had to travel for work and am just now able to sit down long enough to get it updated :)  Let me start with the report...

We got the call late yesterday afternoon from our Oncologist, Dr. Choo.  She said that it's 100% a Wilms' tumor and that they found no signs of cancer in her lymph nodes which means they're very confident that they got it all!  That said, she will still need to undergo chemo which will start in about two weeks.  We have our first consult next Thursday with Dr. Choo and Liv to go over what to expect.

Carlie broke the news to Blu today that she'll be home schooled for at least the first half of the school year.  We explained that the chemo will affect her immune system and that going to school might put her in a position to get really really sick.  Her response was classically positive but in the video you can kind of tell that the full implication of not seeing her friends everyday hasn't totally sunken in when Carlie suggests playdates as her social activities.

You can see the video Here on YouTube

Once again, and I feel like a broken record but, we are absolutely overwhelmed  and honored by the love and support that keeps coming in for our family.  We've received so many cards and gifts, texts and messages... it's just amazing.  Today Liv received several gifts and cards from friends of mine from Missouri and Colorado. I've been amazed at the support that friends from high school and their families have shown my family.  I haven't seen or talked to some of these amazing souls since I graduated and yet they've literally showered our family with love.   Carlie and I were both full-on water works this afternoon as Liv opened the gifts.  

One of the most heart-tugging things that I didn't expect was the support from other kids.  I've heard from many people who have been following the blog and reading the updates with their children.  Several kids that only know Liv through the blog have reached out with handwritten cards and pictures to cheer Liv on.  There's nothing sweeter than seeing Liv get excited about a hand drawn picture and an invitation to become pen pals with someone in a far off place like, Denver.

You can watch the video of Liv reading the letter Here on YouTube

We just want to say again... THANK YOU!  

No Pathology Report Yet...

Well we've been waiting all day to hear from our oncologist, Dr. Choo, about the result of the pathology report but unfortunately we haven't heard anything.  While talking with Dr. Choo over the weekend she said that she doesn't have any doubts that we're dealing with a Wilms' tumor.  At this point it's just a matter of understanding how aggressive the cancer is/was.  Understanding this will then give us the roadmap for treatment.

Today Carlie had a good talk with Liv about all that has happened and what else she can expect.  She knows that the "Little Sucker Ball" needed to come out.  She knows that she will need to have regular medicine called "Chemo" and that sometimes it may make her not feel so good.  She also understands that this medicine is necessary to make sure there isn't any more cancer in her body.  So yes, she knows she has cancer... which is so hard to even type.  Surreal.

She doesn't know that she won't be going to school yet.  (this is going to be a very challenging discussion as unlike most kids, Liv LOVES school) We want to have a full picture of what to expect before we have that discussion.  Likewise, she also doesn't know that she will lose all of her hair :-/  Although on Saturday she and I had an interesting and impromptu conversation while out on one of her walks.  She saw a picture of a young girl with no hair in one of the many signs promoting cancer groups and associations and she stopped and said, "Hmm that's interesting."  Sensing an opportunity to open the discussion, I asked her what she thought was so interesting.  She said, "I don't know... I see this girl with no hair and I just think it's really cool.  Like, she seems really strong.  But why doesn't she have any hair?"  I explained that there are some medicines that people need to take but that it makes them lose their hair.  And that was sufficient enough.  It gives me hope that when the time comes for the conversation that she'll remember that little girl and remember that she too will be strong. Knowing our baby girl, she will be rocking tattoos and glitter on her bare head with a smile on her face (we hope?!)

Continued blessings from friends like Nicki who brought us ridiculously good food (I was partial to the steak) and love.  Carlie's good friend and Naturopath, Dr. (Liz) Dudek, came over and gave both Carlie and I a much needed nutritional IV packed full of all sorts of good stuff to build up our bodies and immune system.  Nine days of sleeping on a hospital floor (and a tinge of stress) has had us both on the verge of getting sick.  At times it's proven difficult for us to accept all of these gifts of love but we're learning to let go and be loved, and this IV treatment is one I'm glad we accepted.  I can already feel the vitamins coursing through my veins and we are eternally grateful for people like Dr. Dudek who truly want to help.  The wine doesn't hurt either....

Other than that, Liv is outstanding.  I think the biggest issue moving forward will be getting her to understand that she has to take it easy for some time while her little body heals.  Tonight she was showered with love from the neighborhood kids who have been dying for her to get home.  Liv created a game called, "Liv Bucks" where participants can earn the afore mentioned bucks by doing nice things for Liv.  Not even cancer can stop that little freight train from pulling out of the station LOL!  It was bitter sweet as tonight was also the last night for our super amazing neighbor Lisa and her two equally amazing kids, Vivien and Max... they're moving closer to where their life happens and we will miss them dearly.  

Hopefully we'll get our diagnosis tomorrow and have more information to share then.  Thank you again for your continued love, prayers, and support

Free At Last!

It's official... we're HOME!!  It was a rough start to the morning with Blu waking up for the first time without having pain meds dripping into her body over night so every movement was less than enjoyable and she wasn't shy about vocalizing it.  The last, and quite possibly the most stressful, experience for Liv all week was removing the tape on her chest that was securing the tubes connected to her port.  Poor Carlie had to handle this scene alone as I had the luxury of staying at home for the first time last night so that I could get Jet to camp this morning.  It was touch and go there for a moment from what I understand.

The pain was soothed with the reality that we were actually leaving the hospital.  As we drove across town Liv commented, "Wow... it's so nice to be on the outside."  It was clear that she was taking everything in on a very deep level :)

When we walked in to our kitchen we were greeted with a huge sign that the kids from the neighborhood had made for Blu.  They all drew something unique on it and then there was a special on the back...

(This is my first attempt at adding a video so we'll see how it goes)

Blu Comes Home

(YouTube Link)

For me personally, coming home means I can let some of the walls down.  It seems as though I was able to effectively compartmentalize the experience due to the fact that our reality was contained within the hospital walls and now that we're home I can let my guard down in some sense.  This has lead to an immediate exhaustion.  Carlie and I didn't take a break when we got home as there was so much to do just to get our life back into some sort of working order.  The fact that we've been scheduled to be in Austin on Wednesday for well before all of this hasn't exactly helped with the stress levels either but we've been able to keep everything in perspective... "It will be what it will be."  Our mantra for the last 9 days.  There is only so much we can control and after that we can only control our reaction to the things that are out of our control.  It's a work in progress :)

We have Liv Blu set-up in our bed and Damma has already made the rounds to ensure everyone is taken care of to the fullest.  Food, beer, ice cream... she's a saint!  We've had several people stop by to love on us even more.  Our dear friend Fabiana made the effort to come by with her new born baby (who is as cute as can be!) and bring Liv a ridiculously awesome art set but also had the heart to get Jet something as well.  It was so thoughtful and timely as he's been watching Liv get showered with attention.  That said he's really handled everything brilliantly and Carlie and I both have made it a point to be empathetic to what he's going through and to fill his little gas tank as full as possible.

Another amazing friend, Arna, came by with a goody basket for Carlie and I that was filled with necessary items like wine.  When we got home we were also greeted with an amazing gift from our neighbors, Amy and her daughter Ruby.  We've started to receive cards from friends and family from all over the country and it's truly amazing.  We haven't even had a chance to open them all but the hand-made cards from cousin's Chloe and Maya were huge hits :)  I can't even look at the Go Fund Me page because I start tearing up immediately when I read the names of people who have felt moved to contribute.  People I haven't even seen or spoken to in YEARS and yet they still reach out and love on us.  It's astonishing and humbling at the same time.

Again, thank you to all of those who have sent texts and cards and gifts and offers to help.... you genuinely give us so much strength!  We feel so blessed to be loved the way we are.  Because I feel like I'm rambling at this point and because I'm on the verge of collapsing onto this keyboard I'll end by just posting a few of the pics from today.

It's so damn good to be home :)

Life is Good!

Sorry for the missed update yesterday!  By the time I was back in the room my gas tank was empty.  I know some people have been able to catch up with Liv's progress through Facebook but I also know that there are many people who haven't so we wanted to make sure we keep this thing rolling!

Today Liv's tank is the fullest it's been in a long time.  Progress has been coming fast and furious and we're only a matter of hours before we can finally head home!  Our original plan to get discharged today was just that, our plan.  It turns out the surgeons' plan is to release her by tomorrow... assuming we get what we need; a solid BM :)

In the meantime spirits are high.  We've been blessed with so many visitors and guests the last two days.  If you were to walk in our room right now you'd see so many gifts that you would think it was Liv's birthday and in a very real way, it is.  Even with the long battle ahead we feel like we have a new lease on life and it's something we won't take for granted.

Yesterday's biggest news was that the NG tube finally came out!  Liv was ecstatic to say the least.  With that pesky little sucker out of the way we were tubeless and only attached by the port to our drip.  SO close!  Blu's appetite had been kicking into high gear and once we got the NG tube out we were clear for liquids and soft foods.  We went straight to the popsicle, Cherry Jello, and apple sauce all of which were a success :)

Today we graduated to french toast so things are going in the right direction!

Visits from friends and family have brightened spirits for sure.  Sarah and Leif hooked us up with crafts and art stuffs... favorite of which were the design your own bracelets and butterfly bead set :)

Our good friend, Frank, had reached out a few days ago and wanted to know what he could bring Liv that would brighten her day so I asked her directly.  Without skipping a beat she said, "Doctor Drill N' Fill.  I've been wanting it since Christmas.  I asked for it on my birthday and I still haven't gotten it."  I'm pretty sure she's only seen a commercial for the product twice but she made a compelling case and who would argue with her :)  I relayed this to Frank and, Frank being Frank, he made it happen...

But as we all know... you NEVER get enough Play-Doh in the original set so Frank's amazing wife, Tu, made sure we wouldn't be running out anytime soon...

(or ever really)

Liv immediately put her new toy to good use and was super stoked to have her best bud, Brylie, here to share it with....

So now it's just a matter of getting some food in her and getting it back out again... but through the proper channels of course :)

Finally, we've been blessed in so many way by all the love and help people have shared and offered.  One of our amazing neighbors, Lisa, has gone above and beyond by starting a Go Fund Me page that was completely unexpected.  So many people have asked if they can help financially and we've just never been the type to accept that kind of help but Lisa insisted that she start the campaign.  We've learned along the way that when someone wants to help you let them.  She's asked that I share the link here on the blog and while it's not necessarily our speed, we also know that it's just as important to receive as it is to give.


www.gofundme.com/livblufightsback


“Gracious acceptance is an art - an art which most never bother to cultivate. We think that we have to learn how to give, but we forget about accepting things, which can be much harder than giving.... Accepting another person's gift is allowing him to express his feelings for you.” -  Alexander McCall Smith

With that in mind, thank you Lisa for setting this up and thank you to those who have already contributed!