Gratitude...

Hi everyone!  Several people have asked about little Blu so wanted to give a quick update ;-)

Liv and Jet started school today and both are in fantastic classes. They each know several people in their class and we know and love both of their teachers!!

Liv is thrilled that she is in Mrs. Wallace's class as Jet had her for second grade also so Liv already feels comfortable.  Mrs. Wallace was super accommodating and said Liv can come half day, full day, once a week, once a month... really whatever works.  Today she did a half day and although Blu was ready and sorta weepy when I picked her up at 11:30, she DEFINITELY wants to go half day tomorrow.  She became even more excited because Dr. Choo said she can go all week if she feels up to it!  Friday is her next Chemo appointment so we are thinking she will go half days through Thursday.

Liv got placed in a combo 1st/2nd grade class and came home with a page of math homework for the week, which is due Friday, however she promptly sat down and did ALL of it... in 10 minutes.  She literally timed herself and it took her 10 min to complete a weeks worth of math.  We were in hysterics that she wrote down her starting time and finishing time hahahahhahah.  I've never seen a kid excited about homework which makes me sometimes wonder if she is actually mine?? Hahahahaha!

After completing her homework, she proceeded to recited all the rules for her class; "You do not want to get a 'blue card' because in 16 years Mrs. Wallace has only had to give out two!"  She then informed us that she already knew the names of all her classmates and that "Class B-2 is verrrrrrrrry special"  (sigh of relief from me and DaddyMax)

Jet has Mrs. Sullivan who is an absolute love and knows our family well including all the crazy dynamics.  However, Jet wasn't exactly thrilled when he found out that he got Mrs. Sullivan, not because he doesn't like her, he does (she was his tutor last year and he became super fond of her), it's just that he thought all of his friends were going to be in another class.  It turned out to be a blessing in disguise for Jet because as luck would have it the 4th grade teachers work in pairs and this means that Jet will get to see his best friend every day in class.  He's super stoked now!

Max picked up Jet, loved on him a ton, took him to Chipotle and then shuttled him to and from soccer and picked up groceries in between. Have I mentioned how amazing my love is?? (another thankful sigh from me)

Our new Super Nanny started today and let me tell you... this woman is a gift from the Universe! She came highly recommended (Nicole and Pete know nannies! LOL) Seriously though....  Little Blu gave her "1000 thumbs up" and we feel the same.  The part I am most excited about is that she will go back and forth with the kids between homes.  She will know their schedules, medicines, school stuff, foods etc.  It is such a load off my mind and while we certainly didn't plan on hiring anyone, I really didn't have a choice.  With everything going on we just can't get it all done, care for both kids and work full time.  She and Liv baked with her Easy Bake Oven and I actually got work done!!!  I will of course still take Liv to every apt and be here when she isn't feeling well but Super Nanny will allow us all to have some breathing room to work.  I am feeling very very blessed today and so full of gratitude my heart is over flowing.

Liv's next Chemo is Friday (and well, every Friday) and this one is just one of the meds, the lighter one at that, so hopefully she won't be sick.  It has other potential side effects such as her hands and feet may tingle, it is suuuuper constipating, it can cause 'foot drag', and possible face distortion or sagging but we just don't know how it will affect her.  Max says they legally have to tell us all these things like at the end of one of those drug commercials on TV and that she most likely wont experience these in the extreme but it still scares the crap out of me.  Who knows, maybe she'll experience some of it, maybe none of it, maybe all of it.  We are just taking it day by day :-)  I also think most of the side affects don't happen this early on so my fingers are crossed this Friday won't be to bad. They still have to access her port which is scary for her but at least she already knows what to expect and unlike last Friday which took almost 5 hours, this Friday should be in and out under 2 hours.

Our night ended with a surprise visit from our amazing friends Justin and Shelli.  They brought super thoughtful gifts for both Liv and Jet.  They brought a mermaid blanket for Liv and an awesome "Prank Kit" for Jet.  Both kids were so in love with both of their gifts and we felt extra loved as well because they include handmade redeemable coupons for things like, "Babysitting for a Date Night Out" and more.  We feel so loved :)

Finally, I know people are going through their own struggles, have sick ones of their own, job troubles and all sorts of things and while we have had so much love poured on our family, we are still available to offer love and support and help to those who need it so please keep us in mind if you need anything too!

The good, the bad, the "I feel great!" to the "I’m going to throw up!" and finally, the absolute blessed…

Mom here…. I’m tired but feeling so much gratitude that I wanted to post as many, many friends and family have reached out for an update :)

It’s been a whirlwind!  Friday at 8am we went in for Blu’s first Chemo and 4.5 hours .....

Almost 5 hours later, we were out!!!

We got home and she felt great and almost immediately she wanted to do arts and crafts.  Jet came home from Damma’s (my mom’s), and Liv wanted to go outside and play... all the while I am thinking…what did they put in the chemo??

All that said, several hours later she was clutching her head and bawling her eyes out to "make it stop hurting" so lesson #1; it can all turn on a dime.  Once comforted and calm, she slept well and right next to us the entire night.  It is a fairly standard that both kids sleep next to us LOL!  I woke on Saturday to this little angel :) For 9 days straight, Max and I slept within a few feet of her, we just can't not have her next to us...

My mommy senses started tingling with an idea so I called Dr. Choo and asked, “If she is feeling well and her body is probably the best its going to be for the next 6-9 months, can she go to the first day or two of school?”  I just thought if she felt ok, if she wasn’t susceptible yet….wouldn’t this be the ideal/perfect time to meet her class, meet her teacher, and at least feel like she is a part of a class?  Dr. Choo said, ”Yeah sure, she can totally go the first two days”.  OMG OMG OMG….This was  a dream come true for me (and us all)!!! Liv, LOVES school.  It comes so easy for her, she LOVES her friends, and she thrives on it.  I told Max with tears streaming down my face and of course his response “Damn you’re a great mom!”   

Obviously this meant new lunch boxes, and school supplies were in order.... even if they'll only be used for 2 half days…. right??  Wrong....

Yesterday morning we went to Target (bad Mommy call) and Liv started saying her tummy hurt.  I instantly started to sweat.  I mean, like, I was running a marathon sweat.  "Oh my god, did I go to far? Should I have kept her home?  Did her happy attitude and overall positive demeanor steer me wrong?"  She then said, “I have to throw up!"  And EFffff if I didn’t race her to the bathroom and leave the cart full of all the new school supplies and everything.  Result; no actual vomit but lesson #1 reinforced :) 

Speaking of school supplies and the start of school... let me take a second to drop some mommy knowledge I came across last year; Mabel’s Labels.  They make these amazing stickers (Think DMV license plate sticker strength so they withstand washer/dryer machines and dishwashers) and I put them on everything lol!  So... backpacks, jackets, lunch boxes, and water bottles are all now tagged and ready for Day-1!  And who knows, maybe she will feel terrible Monday morning and we won’t go, or maybe she will be great.  Either way, in true Craig Woman Fashion (CWF), these kids are prepared, they will be 10 min early (because anyone who grew up with a parent in the Navy knows if you aren't 10 min early you're basically late) and damnit if I didn't do everything possible to make sure none of their stuff will be lost... ever!  It got to the point that Jet actually said "Mom, one sticker per item is enough."  Ok, ok I'll stop :D 

Today I made up Liv's "meds container" for all of her meds.  I made an identical one for her biological dads house so I am confident that everything she needs will be there as well.  Liv picked out the cute holder and I am happy to have this done.  Nausea meds, constipation meds, fever stuff, ginger, Miralax, Tumeric... the list goes on and on and but now, at least, I can feel good I've done all I can to make sure she has what she needs even when I can't be with her :)

Our neighbor Gretchen’s mom made this fantastic pillow case for Liv.  It came with special pens that everyone can use to write a special message and then once you iron the pillow case the messages become permanent and won’t wash off!  We have been having everyone sign and it is quite the masterpiece!!!  If you find yourself in the neighborhood you are welcome to stop by and find a spot and sign :)

Liv's great-grandma and grandpa (although not feeling well themselves) have instructed my Aunt Janet to make sure Liv gets a little surprise each and every day for a few weeks. A sweet card and maybe a coloring book, or a little pack of colorful clay, or a new set of markers... just something for her to open so she knows they are thinking of her. They always arrive in these colorful envelopes and Liv has come to love when the mail man shows up :-) Thank you Grandma and Grandpa- get well soon!!!

When she cries my stress levels rise to ridiculous levels but I’m so grateful that overall she, and we, are doing great.  We got this super cool book from the nurses in the Chemo department called "I'm a Child Living with Cancer"  It goes through exactly what Blu is going through and explains everything so well.  There is page that talks about losing your hair and that it could possibly grow back different.  It could grow back straight, or maybe curly... or maybe even a different color.  Liv's positive response, "OMG how cool!!  Maybe mine will grow back Purple!!!!"  Gotta love her spirit!! 

So, overall Liv had to run to the bathroom twice and her head hurt a few times but all-in-all... she's been reeeeeallllly good.  That said, lesson #1 is always at the front of our mind so we're prepared for anything.  Praying that she wakes up feeling ready to skip her happy little butt into school tomorrow.  We will see!

Chemo Day 1 - The Stress is Real But We Will Deal :)

Sorry for the delay in getting an update together.  We wanted to put together a preemptive post last night but there was just way too much going on to make it happen :)  We spent yesterday afternoon surrounded by love from Carlie's friends from high school who had already planned a visit months prior as an impromptu reunion.  Obviously plans for Carlie had to change but her girlfriends made the trip anyway and it turned out to be such a comfort for Carlie.  Sam made her famous taco's while the adults sat around and laughed and the kids in the neighborhood played until the sun went down.

So, while we couldn't get an update out yesterday... the distraction was necessary and the result is a more real-time update.


The day started with tears and trepidation as the stress became very real when we applied the numbing cream to the skin around Blu's port.  I think it brought back all of those not so pleasant memories from being in the hospital and she realized we were going back to the place where those memories were created.  Liv and I sat at the end of our bed and talked out our feelings.  Our heart was feeling afraid.  Liv expressed that she was scared that it was going to hurt when they accessed her port.  We talked about how feeling that fear is totalllllly ok and normal, and the important thing is that we will be together through the whole thing.  The fear receded for the moment.

We arrived at 8:00am packed with our fuzzy blankets, lotions, lip balms, water, and more art supplies than Blick's!  Blu and I had another little pep talk...

To which she responded....

We were finally called back and we started with the basics of height and weight....

Then we were shown to our "room" to wait for the next, and most stressful step, accessing the port.  They recommended that I sit on the bed with her to hold her still when they insert the port.  It's essentially like getting her ears pierced but with a lot less pain thanks to the numbing cream.  But the anticipation was really difficult for her to bear....

But the nurse was a PRO and once we got the port accessed life became MUCH better because she had conquered her biggest fear.  It was only a few moments later that mom and Blu were figuring out which little piggy went to town and what exactly they went to town for... the most popular items were  chocolate ice cream and Chardonnay.

I've been trying to help Liv develop the ability to prepare herself for these visits.  I've started to plant the seeds that, while she will still feel the pain, she will get reallllllly good at handling it.  The biggest hurdle we had to get over was the first experience/day one and each time after that it will be easier and easier.  So, after the tears were wiped away and the fear was officially gone I asked her, "On a scale from 1-10, with 10 being you nearly died and 1 being it felt like somebody was blowing on your neck, how bad did it hurt?"  She said, "Mmmm I'd say a 3."  I call that a success!  I'm sure she'll have several more moments as we go through this but we'll equip her with all the resources we can to help her cope at every turn :)

UPDATE | 11:30am :  Just as I was about to publish this post, they walked in to start the chemo and we're told that we may be finished and on our way home within the hour.  The next steps will be to get through her reaction to the treatment.  We'll update as soon as possible :)

UPDATE | 12:08pm : Listening to the churning and clicking of the IV machine as it began to pump the chemo into little Liv Blu's body proved way more unsettling than I anticipated.  I feel like I've handled most of the post-op pain, and hoses, and tears fairly well but something washed over me when I heard the sound of that machine.  It was as if I could physically feel the serum entering her body.  The scene was such a dichotomy of sweet innocence of life and the vile toxins whose sole purpose and existence is destruction.  It's times like these that I think the ignorance and innocence of the child is better than the experience and knowledge of the adult.

Amazingly we're already done.  When they removed the access needle from Blu's port she looked up at me and said, "So that was basically a 0 on the scale."  Thank god!  She experienced some warmth after disconnecting, which is normal apparently, and was treated with an ice pack (which I was instructed to hold in place while she finished painting the rainbow that she had been working on.)  Once the nurse had left, and while still painting her rainbow, Blu said, "Actually that was pretty easy."  Carlie and I just looked at each other with such relief.

Of course that's how she feels now.  The next 24-48hrs will be telling.  One hour at a time :)

- Max

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!