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Summer Time Rewind, A morning at the Theatre

As May rolled around Ladybugs were still a strong presence in our household. In or out of the hospital we had ladybugs everywhere. Olive had always loved the book series, The Ladybug Girl.  When she got sick ladybug luck and ladybug love became one of our major comforts and sources of strength.  I was browsing through the internet and came across that a kids theatre production, The Ladybug Girl and The Bug Squad, was coming to the Bay Area.  My heart sunk. Another moment is coming and will pass that I won’t be able to bring my girl to her favorite character play due to risk of crowds and germ exposure.  We had missed The Frozen sing along in the winter and it just pained me to think we would miss another.

That is when and idea popped up in my head.  I jumped online and found the contact to the theatre, explained our story and asked if we could sit in on a dress rehersal.  This way Olive and Quinn could enjoy some of the production and Olive would not be exposed to crowds and germs that would put her right back in the hospital.

The play director promptly emailed me back and said she would love to make something happen but would need to check with the cast members and make sure all were on board.  By the end of the day we were invited to The Children’s Creativity Museum to view a rehearsal of the Ladybug Girl on June 20th at 8am!

With luck on our side Olive was discharged from the hospital on June 13th and slowly got stronger and was able to make it!  We arrived that morning to a desolate downtown and doors locked.  After a couple of knocks we were in!  The director met us at the door and showed us to our seats…they were all empty! We had a private showing and our choice of pick. Middle center please!!

The show was magical! Fun, energetic and made all of us laugh! The cast included Olive and Quinn through out the rehearsal.  When it was over we realized we had a full production and the director had gifted Olive and Quinn both fun goodie bags to take home.  We all skipped out of there, even Daddy! There is just so much love in the world.  Adam and I cannot thank the production enough for rolling our the red carpet for our girls.  They loved every minute of it!

Summer Time Rewind, A Weekend at The Tornello’s

Summer Summer Summer Time!(of 2014) Although we were on lock down for most of these summer months we were able to grab a handful of priceless moments that refreshed our souls.  Olive counts we consistently in the hole and it was a miracle when we were able to out of the hospital.

One of Ollie’s Angels, Lisa Tornello and her hubby Steve and boys Wyatt, and Luke tossed  the keys to their beautiful home while they were away on vacation. For 2 long weekends in a row we were able to leave the city fog behind and settle in to their beautiful home in San  Rafeal with a POOL!! BONUS!!  We walked in and the girls were greeted by a gift from their buddies.  A huge box of Fruit loops, with a note Since your on vacation we thought we would share our vacation treats! With a bowl in their bellies the girls threw their suits on and the endless day floating in the pool began.  Thanks to our Dear friends we had hot summer days and nights basking in the sun and splish splashing around like little kids should.  I know I thank her but not sure if Lisa realizes what a true life saver this staycation was for all of us.  From the bottom of our hearts, Thank you to The Tornello Family!! You, as always, brought us light in our darkest moments.  You are one of our most precious Gems.

Best Birthday Surprise EVER!!!

What an amazing month back into the real world for Olive.  Her birthday was quite a celebration, for so so many reasons.  Olive had her Grandmom and POP POP out for a couple weeks.  They were there to celebrate with her classmates at her after school party but was able to present her with the sweetest gift on her actual birthday.  I will let the video explain most of the emotions but Olive was called up stairs and was asked by her grandmom and pop pop where they let her know she would be rocking out 3 days after her birthday to Katy Perry LIVE!!!! Olive screamed, squealed, and danced with excitement.  With the perfect outfit and energy bursting at the seems we were off!!! Grandmom,Pop pop, Olive Adam and I jumped in the car in order to make it down early enough to hang in parking lot and dance to get our selves ready for the BEST  NIGHT ever!!! Olive was skipping and smile from ear to ear beamed on her beautiful face.  Kate Perry did not disappoint! The entire show was amazing and our seats blew our minds! Go grandmom and pop pop!! Thank you for treating us to the sweetest night yet and showering our girl with all the love, support and KP!!! It just doesn’t get better!

The beginning of The Maintenance Phase of Therapy

August 25

Olive got through the final stretch of her aggressive phase of therapy! We had to wait to start her “maintenance phase” because her counts did not recover fast but at least in our hearts we knew, at this point, the hardest part for our girl was over.  Instead of weekly aggressive treatments Olive will transition to Monthly and start a complex pill regiment at home. Just the thought of her only needing her port accessed once a month expands my breath 3 times what I have been able to breath for the past 8 months.  The idea of her slowly regaining her strength, counts, and HAIR are all comforting us as we embark on the next chapter.

Olive missed her first week of first grade just to allow her immune system to recover a little more before she was reintroduced into the world. I am so excited at the thought for her to run around the playground, sit for story time and just laugh with her friends again! With all these exciting thoughts I am also feeling the next phase of intense stress.  We have been able to protect and shelter our girl from the world of germs as best we could now we are sending her back into a not so controlled  environment.

Sept 2nd was Olives first day back at school.  With the smile of an angel and not a single hair on her head Olive threw on her hat and backpack and was out the door as soon as she could.  Her teacher Mrs. Quinn along with her classmates welcomed Olive with pure excitement and open arms.  I grabbed my seat in the back of the classroom, holding my breath, to be  on germ watch and see how I could create a safe environment for a daughter and aid with the transition in any way I could.  Luckily my mom,Mimi, and Adam’s mom, Grandmom,  were ready to take turns again during different times of the month to support Olive.  My mom came out first and took overly strict orders from me on what she needed to look for, ask, assist,and clean in the classrooms on her days with Olive, SORRY MOM! This was way more stressful than i ever anticipated.  Both our girls will become professional hand washers by the end of this phase.  After about 10 days of school my mom helped me realize Olive was ready to be set free without stockers watching her every move.  Everyday we would walk Olive to school and send her off…Love you…Don’t forget to wash your hands…over and over and over again.  Sorry Ollie I was even annoying myself but it was the only thing I could do to try and keep you well when you went to school.

Grandmom and Pop Pop came out mid month to continue the support picking Olive up from school and helping set the structure after school we needed to help get our girl back into a strong routine.   Olive was loving ever minute of it! Learning, Laughing and just loving life as a “normal” kid again!  Sept 20th was her 6th birthday.   We celebrated by having 12 girls from her classroom come over for a princess party with a surprise Elsa visit!  I picked the Girls up from school and as walked them all home.  Within minutes of arriving there was a flurry of girls cloths and giggles as they all got dressed up as quickly as they could.  Immediately rushing the back yard where the frozen sound track played they all belted into singing and acting as if they each were the main character in the film.  IT was the sweetest site and sound and we could not have asked for a better outcome for that day. Life did not feel normal but it was off to an amazing start to move towards that as a goal.

Down and back Up Again

After a fun 4 nights in tahoe we headed back to San Francisco for another check up with Olives doctors to see how her lab counts were.  We arrived sunday night at 10pm, jumped in bed and were at the doctors by 930am.  Her counts creeped up just a hair, Olive remained neutropenic but since she had been on intravenous antibiotic for over 21 days and her stomach had had enough the doctors decided to discontinue them for the time being and see how she did.  For the first time in 3 weeks Olive finally did not have her port accessed( no IV tubing hanging from her chest)Olive did not make her counts for this weeks treatment so we would have to wait another week. After the appt and feeling discouraged a bit we realized the best thing was to just jump back in the car and head back up to our families small slice of heaven…TAHOE!! Glad we didn’t unpack! Back on the road in less than 15 hrs.  May sound crazy but we want to give our girls a little more summer and fun while we can.  That night we were sat down to eat and Olive took a big sigh of relief and said”I love life”.  Adam and I were speechless.  How can our beautiful little girl still love the life when she has been dragged through the ringer for the past 8 months?  We are so proud and relived that she is still seeing the beauty of life and continues to rise above no matter what curve ball is thrown her way.  People keep telling us there will be silver linings, The Diamonds are starting to see them but ours our rainbow lined!

Our next four days were filled with sweet mountain air, bike rides, stargazing, sandcastles, pinecone paintings, treeswings and slumber sleepover sharing the same bed with little sis.  The days are staring to shed a little more light and the stars are getting brighter.  We won’t miss a moment because big or small they are each a true blessing.

live it up!!

These counts are just not listening to us!! Entry # 39

August 14th

We have our first follow up after olive being discharged.  Counts baby, counts!! Come on. We all have are hearts set on Tahoe.I should not have mentioned anything to the girls about possibilities but it has been so long that we have been able to get them excited about any road trips. The results were not in our favor.  Olives ANC was about 60. She was still completely neutropenic and would have to remain on antibiotics, now entering her third week. Olive was devastated, done,  just finished all together. She wanted the port needle out, she wanted to go to tahoe and swim, she wanted to just be a kid and have a little summer.

This was our moment where we needed to follow the heart while staying within our limits.  After a long talk with Adam we decided with meticulous planning, a lot of intravenous Antibiotics on ice, medical supplies, soap and sanitizer we were off by late afternoon to tahoe.  Where our souls could rest awhile.

We rolled into trucked Thursday nights where the girls had a slice of pizza and danced to some live music. They were nestle into the Tahoe beds a little late for some rest.  That weekend we were able to ride our bikes, play at the park along the lake, eat ice cream watching the sunset, and give our daughter the best care ever amongst the trees.

It was a lot of work but so so worth it!

A Kate Perry thought. Entry #40

August 12th

Sitting at dinner Olive says ” oh mom when my cancer is all gone and I can go on an airplane again when we are in the air flying we can walk up and down the aisles and sing kate perry walking on air… We can cuz we will totally be walking in air, that will be so fun!!!!!”

I just looked at her hard and replied ” totally, Olive.”

Whole lotta love. Lots.

Back from we don’t even know where!! Entry # 41

Hello!

I cannot even believe how long it has been! I want to start by saying Olive is Awesome!!! We came out of our August slump and just all focus became fully on transitioning her and the rest of us back to some sort of normalcy…whatever that is.

Olive was finally released after another 13 days in the hospital on August 7th. All labs counts remained in the hole but her doctors said since her energy and appetite have been great and there has been no fevers for days  they would allow her to be taken home and cared for by her daddy and I.  Wahoo! This visit knowing and hoping that it would be our last for awhile we stretched the freedom and had sister sleepovers in the hospital where the girls made forts with hospital curtains( daddy’s awesome influence comes through again), snuggled through movies w bowls of popcorn, fingerpainted, sang, and danced. They had become magicians making something out of nothing.  Their something was all they needed as long as they were together.

We were so happy to get our baby home once again the girls could sleep in their rooms together and get into all the mischief they wanted once the door was closed!  Although we were going home the fear of germs was still at the max.  Olive had no immune system at this point to aid her to fight off anything so they sent us home with intravenous antibiotics that we were luckily able to infuse ourselves.

Olive was discharged on August 7th at 630 pm after her last of chemo treatment.  I had picked up Quinn while olive napped that afternoon so she could accompany us out of there.  Olive loves the feeling of all of us going home together.  While the chemo infused I was quickly packing up the final items, Quinn swung from the rafters and Olive layed in bed.  I handed Olive her flat sparkly slippers( the chosen ones for this admission). Without an expression change, an honest statement was released from my daughters lips. ” I leave this place in heels”.  Like I said it was an honest statement, there was no attitude at all. Within seconds I had her shinning silver heeled wodden clogs on the bed.  She sat up and started putting them on, chemo finished, we said our good byes, and off we went…me as a bag lady, Quinn a burning flame of fire and Olive in her heels.

Outside Olive continued to have her mask on ( it was her second nature at this point).  I asked her what she didn’t need anymore within seconds she ripped of her mask and said” I don’t need you anymore!!” What a beautiful smile appeared from behind that mask. We jumped in the car Olive was kicking her legs and yelling everything looks so new!! “Look at that house and the trees!” I joked with her and said even mommies car looks new( she always tells me I need a new one), she didn’t know who to respond to that one;)

A modified freedom we were given. We will take it!

Cell Block 501- Entry #38

Here we are locked and trying to be loaded with fun but it is tough.  We are in our 8th solid relentless month of this cancer BS and its just hard at times through out the day to say positive, creative and playful.  Olive is sick of being pulled away from home and her sister and stuck in her cell block now 501.  Her blood counts remain in the hole which in medical terms they refer to as the nader period.  Her bone marrow at this point is exhausted and is just not recovering as quickly.  We will remain here until Olive’s counts recover so she as some immunity and is safe to come home. We play on words and moments to just get us through…we are stuck in love and as one of my besties from back home(thanks for the mojo TAI!) texted me yesterday ” shine bright like a diamond” song by Rihanna.  Olive and I listened to it last night we are singing it to make it through (well that and of course a lot of kate perry).  We trying hard to shine bright like diamonds in the midst of this San Francisco summer cancer fog.

We are so close.  She did get her treatment last Friday and will get it this Friday.  Luckily these treatment you don’t have to make blood counts.  We are still rolling forward. Super Positive!!!  Olive will then have a week off to “recover” and then hopefully the next week she will make counts to start her maintenance phase.  It’s a big treatment but then her weekly treatments will turn into monthly treatments along with taking chemo pills daily until April 25th 2016.  Mark the date because there will be one hell of a celebration to follow.

Lots of Love