Monday, January 23, 2017

Finish Line In Sight!!

Last infusion…DONE!  Friday, January 6th, 2017 was and always will be a memorable day.  While we knew little Blu would still have to go through additional labs and final scans (which haven’t taken place yet) this was her last Chemo treatment.  We got Jet to school, attended assembly and headed to Rady's Childrens Hospital for her last infusion. 

                                                      Larry the Lobster always in her arms. 

I thought port access would be a breeze buuuuut she wasn’t feeling it…well, actually she did feel it and cried and held on to DaddyMax.  I envisioned a quick in and out given she knew it was her last one but she was pretty emotional.

We got such an amazing surprise when the nurses snuck up to sing her,  “No More Chemo for Liv” and they made her such a beautiful sign.  We also didn’t know about ringing the bell to mark her end of Chemo!  Max and I were so emotional and both were pretty choked up. It was such a surprise!

On the way home I cried silently in the front seat which surprised me because Liv had just finished her last infusion, we were done and over the biggest hurdles... so I think maybe I was feeling relief?  Max carried her upstairs and snuggled in next to her while I stayed downstairs bawling only to finally came up to lay in her bed on the floor and pass out for an hour.  I was just drained.  It was like my body knew we had just arrived at the finish line of our 6-month marathon and it collapsed as we broke the tape.  I can’t remember feeling that wiped out since her surgery.

Thankfully this was her last infusion because it was also one of her worst being sick.  She threw up Friday and a few times Saturday.  Thank god Max was there for the worst of it as her throwing up makes me throw up.  By Sunday she was feeling like her old self and, really, since then she has been great.  Please Universe, don’t put my baby through chemo again!

All throughout Chemo Liv refused to shave her head.  Even though she was basically bald, she had these long wispy strands left.  She called them the Long Blond Strongs, because, "they're long, they're blond, and they're holding on!" J  Since her last infusion, however, there is the slightest outline of hair growing back!  It is really amazing and exciting!!  It's like it just started sprouting out of nowhere.  We showed her a recent photo where you could really see it coming in and she made the executive decision that in order for the new hair to come in, it was time to get rid of the old stuff.  So DaddyMax lovingly used his clippers (see the video here) and cut off the rest of her Long Blond Strongs J 

She LOVES it and is now selling the chance to also enjoy her new do in the form of ‘pets’ where one can enjoy her new fuzzies that are growing in for the low, low pice of $1.00 ($2 for 20 if you call now!) J  I find this hilarious and love that she has such a good attitude about it.  She gives Jet 5 free pets each day and offers up additional pets for a small fee.  She also seems to be more confident in being bald.  I believe it is because she chose to take it off versus the cancer and chemo taking it from her.  Whatever the real reason is, I am thrilled that she is at this point! I think she looks incredible!!

                                                    Tell me this isn't the most beautiful baby girl EVER!!!

Blu's heart is just so incredible.  I’ve been finding these amazingly sweet notes in my day planner.  Max and I write notes all the time and put them in Jet and Liv's lunch box so they find them during lunch at school.  Blu has picked up on it and its so sweet!  Her love language has always been writing, drawing, and art and when one of these little love notes pops up it just warms my mommy heart to no end J

This one had a small polaroid of my sweetie :-)

Liv’s final scans are Jan 27th and we have her official “done with chemo” appointment with her doc the Monday after that.  This is the next and truly final step to deem her "Cancer Free."  I’ll be anxiously awaiting the call after her scans for sure!  Although I know in my heart they will be clear, please keep her your thoughts and prayers all the same J

Based on the positive feedback from the doctors, we are confident her exit scans on the 27th will com back clear which will then mean that little Blu will have another scan in 3 months as a follow-up.  When those also come back all clear, she will then have the port in her chest removed.  Any surgery with your baby is scary but I am viewing this one come April as an 'easy' one given it will be much quicker than when she had the tumor and her kidney removed.  In the mean time, we're just looking focusing on these exit scans and her doc giving the thumbs up that she is done. 

As I re-read this entry before publishing it I had a thought come to me as to why I was so emotional when Liv finished her last infusion.  For 6 months we've had this 'safety net' of Oncology docs, and amazing nurses who were completely dialed in to her health every single week.  Her counts were done weekly, her weight was checked weekly, she was interviewed weekly... we knew, every week, exactly how her little body was doing.  This became our normal and I think the reality that all of this hyper-attention to Liv's health is coming to an end has me.... scared?  Maybe, nervous?  Does this make sense?  I mean, in the future if she starts to cough or gets a cold I feel like I'm going to be a paranoid basket case just waiting for the shoe to drop or next bomb to hit.  Who knows, maybe the simple act of sharing this feeling will help me process and bring me to the realization that I won't need to react with fear :-)  Max always says the energy you put out comes back to you.  And, I for one, truly believe in my heart that all of the love and energy you ALL have sent Liv Blu throughout this entire ordeal has undoubtedly helped her to heal!  So, with that in mind, I am going to choose faith and to put the energy out that we are done with this, that she has been healed, and move on.  

I will continue to visualize and affirm, with great clarity and detail, Liv Blu's graduation day when she will cross the stage to receive her diploma, her long beautiful hair flowing behind her, and she'll look out at us with her contagious smile.... only to look back on this year as just a blip on our screen of life. :-) 

Saturday, December 31, 2016

Happy New Year!

Happy Holidays Everyone 😀
Catching up from Liv's last infusion and the holidays. We wanted to thank everyone who sent good wishes and holiday cards and treats for Liv Blu and Jet. It has been a very blessed holiday indeed. (This is kinda pieced together from the last few weeks so bear with me:)

Handsome Jet!! 10years old. 4th grade.

Liv Blu 6yrs. 1st grade.

Liv had her biggest dose on December 16th. The previous two weeks she had a break over which time her little body built itself back up so she was ready for the Chemo. She had two good weeks (half days) at school and had a lot of time with her friends and felt pretty good overall.  Her class is doing lots of projects and she has enjoyed getting to take part in everything. It is soooo good for her being the little social butterfly that she is.

NO tears at port access- our girl is becoming a champ!!

The meds kicked in and someone was loopy and happy!

During her latest dose Santa came to Rady's Children's Hospital and for some reason, this made me bawl like a baby.  DaddyMax was sitting with her while I went to the bathroom and when I came back, he was carrying her out to see Santa.  They left our clinic room in a bit of a haste to catch the Big Man that she had forgotten her hat so Max ran back for it as she didn't want Santa to see her bald (which seems odd given all the kids are bald but it was important to her so of course, Max ran to grab it).  They've started to give her meds before the Chemo to head off any nausea and it is strong to say the sometimes she is super loopy and happy and other times, she is sort of unaware of everything and I think this was one of those times where she forgot she didn't have her hat on and once she did, needed that comfort. She definitely can't walk once the med is given so Max carries her from that point on.

When we arrived at the room where Santa was set up there was a lady who saw Blu and came up to her with this super soft, hypo allergenic blanket and gave it to Liv.  It was a one-of-a-kind blanket that had images of Paris all over it, specifically the Eiffel Tower.  Liv melted because unbeknownst to the woman our good friend, Danielle, has been teaching Liv basic French so needless to say, she loved it immediately.  When we explained the sentiment to the woman who chose the blanket she immediately got tears in her eyes.  Now, I'm not sure if I've gotten used to people being around Liv in the Cancer ward or built up a tough skin having seen all that we have during our time in Oncology but, this woman who was so taken by Liv, just about made me come undone! I got tears in my eyes, thanked her and as Max carried her off, back to her room, I turned around and hugged this woman for like 5 minutes with tears streaming down my face.  I just held on to her and thanked her over and over for being so kind.  Another woman who was volunteering also hugged me and cried. So, there I was with two total strangers just sobbing. They must see this time and time again and have empathy?  Or maybe each kid touches their hearts differently but whatever it was, it was an unexpected moment for me... one I won't soon forget.  I think I forget sometimes, because all of this now our new "norm", that our baby girl really is going through SO much. She is SO tough and handles it so well that I've just gotten used to it at times.  It's such a reflection of her unbelievable strength and positivity :)

We got little Blu home and she seemed ok.  She wasn't sick but was definitely loopy from the meds that keep her from actually getting sick. Once we got her home, Max went to pick up from school while I got her settled in our bed.  After I got her all cozy I went downstairs to get her snacks and out of no where I hear thump, thud, thump!!  Then...... "whaaaaaaaa!!! whaaaaaa!!!"  I raced upstairs to see Liv, out of bed, and on the ground.  We literally have a baby monitor on her and, believe it or not, a walkie talkie in case while I am making her food she needs something.  The little butt-butt doesn't realize she can't walk even though I tell her to stay in bed!  All she would say is "I fell! I want my DaddyMax!"  I got her back into bed and although she wasn't hurt she was sobbing.  I immediately called Max and he was on his way home with Jet.  Although I had finally been able to get her calm, when Max walked in and she saw him she started just started bawling all over again and so he crawled into bed and held her until she felt better. This is one of my favorite photos ever. It is so raw and so real and so heartbreaking because she is really worn down here, so close to being a month or so out of chemo but at the same time, her little body is at its weakest having just been infused with all that poison they pump into her.  I think they stayed just like this for 45 min at least.  Thank you Universe for giving me this man who has such patience and the biggest heart ever.  He would walk through heaven and hell for his family.

I hate Cancer.  My precious baby girl, so strong, so sweet, so amazing and this disease is awful.  First the Cancer and tumor and surgery and now the poison they pump from her heart to every area of her body to insure it doesn't come back.  To see her not able to walk, to see her sick, to see her weak and tripping because she can't pick her feet up properly.... it all makes me come undone at times with sadness and outright anger.
Sometimes, as a mom, I don't realize why I am emotional or extra short or super happy.  I end up feeling all ranges of emotions and I'm starting to understand that it comes from how well (or not) Liv is doing on a day-to-day basis.  So much of my life revolves around whats going on with her.  I have a hard time separating out my life from hers.  It all revolves around Liv Blu.  We are really lucky that, overall, she is doing great. I mean, some kids are not doing so well and Liv, she really is hanging tough. Yes she has pain in her arms and hands (neuropathy, especially in her finger tips so needs help with tasks) and her feet don't quite work the same but overall she is doing OK.  Foot drag is where she can't pick up her feet enough so they tend to drag or drop.  Whats sad (or amazing) is she realizes this and so makes extra effort to pick her feet up higher. She kind of looks like one of those horses with the really high feet or maybe a scuba diver walking with flippers on.  Its awkward and she knows it but she is doing her best. She still trips a lot and falls and cries but overall, these are small side effects given what could be going on.  Some days she seems totally normal and then others you can tell what she is going through is taking its toll.

A few days later, her counts were still good and we got approval from her doc to head to Idyllwild for a few days.  Being so close to San Diego we knew if she didn't feel well or was fevered we could zip home.  I knew the fresh mountain air would do her good and all of us really wanted a FamBam getaway given the chaos of the last 5 months.  We rented a little cabin in the woods less than half a mile from town. The air was crisp and cool, the cabin cozy and we basically did nothing except puzzles, eat, sleep, play games, watch movies and read.

We all got to relax.  We walked into town and of course baby girl ends up in her favorite spot, on Max's shoulders lol. I personally don't think she was tired but Max gives in to her anyway :-) Ringo loves running around chasing squirrels and we woke to snow on the ground which was fun.

My favorite part was we saw a sign for an animal rescue.....welp, I had to visit!  So we all went and got a super cool tour of Living Free Animal Sanctuary.  We saw the dogs and then got to pet all the meow meows!!  I've volunteered quite a bit in the past at shelters and gotta say, this place was top notch.  If you are even in the area, stop by, see the pets, and try to make even a small donation!

So many kitties... we were all so happy that they were so happy!!  What a life!!
It was just 3 days but we all felt recharged on the drive home.

Little Blu's designs on shirts and tote bags came in just before the holiday and she LOVES seeing people from all over send pictures in wearing her creations!! Thank you all for posting and texting the photos of you, your kids, relatives in Liv Blu designs!! Huge thank you again to Robert and Paper Clouds Apparel for making that happen!!!!! (I have about 15 photos from people in her shirts but don't have room to post them all) :-)

We are on the official countdown to Liv being done with Chemo. About 5 weeks to go and this mama is anxiously counting down the days. Thank you everyone for your continued love and support.

Our crazy FamBam in our "wumsies"  (thank you Tia Christy!)  Happy New Year!!! Liv's next dose is January 6th and then we are counting down!!!

                                                     HAPPY NEW YEAR!!!!

Bonus Footage:  Liv Blu's Anthem

Saturday, December 3, 2016

"Scans show no return of disease"

I started this next update before Blu had her scans but thanks to Facebook, most people saw and we are so happy to report, her scans showed NO sign of disease having returned.  More directly, they didn't show any Cancer!  Sigh of relief!!! I cried, and cried, then celebrated, then cried and I think I have zero tears left in me.  I didn't realize I was so worried till I heard the news.  During her scans I kept looking for tumors and freaked myself out with all the dark spots and things I thought might be bad, they said nothing showed up.  That said, she still has 8 weeks remaining before final scans.

 Walking into her scans. THANK YOU UNIVERSE!!!

Her port is clearly shown. 

Xray was super easy!

Officially Liv has 8 weeks left.  Its CRAZY to think about how fast time has gone since July 29th when Max and I took her in for "constipation."  What an absolute whirlwind this ride has been. 
It's been hard but it has also come with so many lessons and opportunities to show Jet and Liv about helping others, being humble, being understanding, karma, love, friendship, and enjoying life NOW because my goodness you don't know what will happen tomorrow. 

I am ready to be done with this hallway!

There is nothing like seeing your child suffer.  There is nothing, and yes I mean nothing, worse than seeing your child cry in pain, go through surgery, not understand all that is happening, having to explain one more poke, one more scan, one more needle and admittance to the hospital, just one more hour in the ER or oncology ward, one more doctor visit,  carrying around her turquoise vomit bucket places etc etc.  But....she is going to be so much stronger (which if you know Blu this idea seems near impossible because she is one bad ass little girl), her brother Jet has a new understanding of patience, we ALL have a better understanding of appreciation for friends, and family and as hard as it is, letting others help because people really do want to help.  People really are good and they just want to help.

On that note- we took several gifts that had been given to Liv which she had duplicates of and donated to the Treasure Chest at the Clinic.  Liv LOVES giving back and this made her day :-)

Liv's big dose last friday went...ehh...ok.  Port access went fine but no blood would come out.  This has never happened.  They put her through all these motions, arm raises, sitting up, lying down etc to get blood flow.  This added a solid 2 hours onto what I was secretly hoping would be max 4 hours.  Liv was a trooper of course and smiled through it all, even the port access.  Everything seemed to take longer and we were wiped out by the time we left.  Not knowing whether or not she would be sick at night we both took turns being awake to look at her, feel her head, check her blankets.  Being so tired we both snored like a somebody warming up their Harley and kept each other up all night. Both kids sleep on our floors on their mattress toppers and we love having them next to us but between Liv grinding her teeth (which has to be the most uncomfortable sound ever... like nails on a chalkboard uncomfortable), to Jet who wake up at midnight nearly every night and sneezes a solid 12 times before going back to bed, to Ringo laying on Jet's bed scratching his dry skin, to Peekay who, bless his heart, has bronchitis and coughs like he just chain smoked a pack of cigarettes, to me waking at 5 and praying silently it is only midnight... well... neither Max nor myself have been sleeping all that well these days so I feel like I am running on empty most days and we all need a vacation lol!! :-) 

This dose was the biggest so far and it knocked her out.  She was nauseous on the way home and Daddy carried her upstairs and got her comfy for the rest of the day.  She did well Saturday  but then when I came upstairs Sunday morning Max was sitting with her helping her vomit in the toilet. Such a sweet, sad but also precious photo.  Sometimes I think I am taking too many photos but I also think come 25 she will look back and be happy these moments were captured on film.

Carry me Daddy!

He handles her throwing up so much better than I do.

Savy, Gabrielle and Blu- my good friends Melinda and Devri's amazing girls came to visit. They had fun wearing Liv's hats and playing together. They are all born within 4 months of each other!!

As many of you already know, Liv Blu's art was turned into shirts and a cute tote bag and its been AMAZING seeing people post photos in support of her.  I mean AMAZING!!!  Liv was pretty emotional seeing the first one as its a visual sign of love and support and it just, ahhhhhhhhhhhh, makes my heart swell so much seeing how happy it makes her!  Art is her love language.  Its how she shows her love and thanks and feelings- she draws all day and makes notes and pictures so to see others wearing her love, well, I am beside myself.  Thank you everyone who got a shirt or tote.  A HUGE thank you to Robert Thorton of Paper Clouds Apparel who made this all happen.  I encourage everyone to check out and see the amazing things he is doing for those in need.  Plus he is just a super rad dude who sets a great example for so many.

Today at Jet's soccer game :-) So happy in Max's lap. :-)

So many moochies for his baby girl :-) 

On top of the fantastic news from her scans, we found out that next Friday we're scheduled for.... absolutely nothing!  She has no labs, no scans, no blood draws and it will be the first time since July 29th that we have a break from the hospital. Yippee!!!  The following week she will get the biggest dose yet but I'm living one day at a time and enjoying a small break from it all.  Thank you everyone!