Good Bye Evil Cisplatin!

I have to say... all of those positive thoughts, vibes, prayers and candles have helped! I am not going to lie and say that Kayla has been dancing all day because for sure, she has not. But, our plan to have her try and sleep though the nausea really worked today to keep it to a minimum. I kept Skype on all day and checked in on her and with Denny very frequently. Most of the time, she was sleeping.  It was a little frustrating to see some of the nurses or Doctors come in and loudly communicate with Denny while standing over her bed. I knew exactly what she was trying to do and was afraid they were going to put an end to the sleep our beautiful warrior needed to get though this really hard day!  Luckily, she managed to get through it. 6 hours of Cisplatin hell dripped through her tiny body. Willingly, my angel laid there allowing the toxic chemicals to invade her body once again.... for her fourth and FINAL time. We just hope and pray that the Amifostine that entered first does it's job to protect her hearing from any more damage.  Kayla is a true warrior and I am so incredibly proud of her. She has done us all so proud by finding the strength to take a bat to this monsters head.

Tonight, I just wish her a peaceful nights rest as she prepares her body and mind to continue winning this fight. I am so so proud.

Thank you so much to all of you who have reached out to send us messages of strength and love since my post yesterday. We appreciate and love you all so much for being there for us and keeping us strong. It is so much easier going through this knowing we are surrounded by so many loving thoughts. No one should fight alone!

Speaking of that, Kayla and I created some new wrist bands in youth and adult sizes. They will debut at the 5K one week from today. After that, we will see how many we have left. Kayla picked out the color blue and the writing is in silver metallic (representing grey for brain cancer). It reads on one side "Kayla Rose" and "No One Fights Alone" on the back. We thank you all for joining in the fight!!! I have been doing my own training here to get fit using Kayla and everyone I know battling this horrible monster as motivation. I feel like if Kayla and these kids can do it, so can I.   After months of sitting around and waiting, I knew I needed to get moving.  Today, I was a sweaty mess bawling my head off as I ran like I never have before. Just before being admitted we started this training routine. I'm doing Couch to 5K.  Denny does his own beautiful thing.  Kayla actually loved seeing me sweaty and I told her that I'm doing it for her. Her smile was never wider and I realized she was proud of me.  So Kayla. While you slept today, I ran for you. I poured sweat for YOU and prayed so so hard that you would feel it. That you would feel all of the love out there in the world for you and fight this like you never have... and you did!  I love you my tiny warrior. You really are my hero.

Final Preperations For Our Final Battle

This is it. Go time. Tonight my tiny hero was admitted to begin her fourth and final round to beat this ugly nasty hairy beast once and for all! The sky was incredible which filled our hearts with so much hope on our drive back to the hospital.

The past few days we have packed in as much family and fun time as possible. You know how you can smell the electric charge in the air when a storm is near? It's as if there is a some kind of sign surrounding us which gives the kids this additional love for each other that as a mother I wish so badly we could witness more often!  They were thick as thieves those two! Hiding from "the parents". Telling secrets. Asking to sleep in the same room. Playing game after game together. Kayla showing more patience with her brother then normal. Anthony being more loving towards his sister then normal. I just enjoyed it while it was there.

The kids copped a squat on the playground (since we had it all to ourselves) and enjoyed the beautiful weather.  There's nothing like a friendly game of Candy Land in an actual Candy Land playground!

Nourishing their friendship with LOVE. These are moments captured in time that can not be taken away from us. Never. Ever. Ever.

This has been a very hard week back in our home town, Novato CA. We lost a very special woman, mother & wife to this monster, Cancer. Jennifer Wilson Cooper. She was such a strong and inspirational person that I only wish I had more time to get to know.  She is survived by her husband (and love of her life) Dennis and her son James (Little J) who is just a grade younger than Kayla in the same school.  Jennifer was a huge help and advocate for our family as we have been going through this battle with the beast. She did so with a smile on her face and courage in her heart. Always. I am so sad for all who love her and continue to feel the waves of grief.  I can not thank her in person now like I had planned on doing. I won't get that chance. Little J will not get a kiss on his cheek while being tucked in by his mom tonight. It's not fair.

One thing I have learned during this is that a lot of people don't know what to do, how to act, or what to say when someone they know is put in a situation like ours or who is going through grief. Some of you are nodding. I know I was once there nodding too.  I can only say, be a constant in their life. If someone you care about is going through something traumatic, the worst thing is to be left alone. More often then not, you worry you will disturb them, bug them, or say the wrong thing, or just get repetitive. Trust me. Your not! And repetitive is GOOD!!!! No, it's GREAT.  Even though I haven't been able to respond to each email or note I have read filled with love or encouragement, I am constantly lifted over and over again. It's helped me to stay strong enough to write this blog! It's surprising to me who has been in our corner throughout all of what we are going through (you all know who you are!) and who we truly believed would be that hasn't. It's the most devastating thing going through something so life changing and wondering where the people are who you felt such comfort around before. People you assumed would be behind you every step of the way... Yet, through this, we have made some truly amazing and genuine friendships. There are friendships and relationships we cherish so much now... even a few from people we have yet to have met! The love that we have felt from people who have never even met us, or hardly knew us before is one of the most amazing feelings ever! I knew that relationships would change through this, but I had no idea which ones.  So please, not just for me, but for anyone you may encounter from now on going through something big... bug them! Don't let them suffer alone. Be there to support them if you truly love them. I know I will from now on.

So, tonight as we pulled up to fight our monster, I was filled with renewed hope and love. Such peace ran through me. I grabbed Kayla's hands and we said a little prayer. I hugged and kissed her and she told me something I needed to hear... "Mom, I've GOT this. I'm going to knock it out of the park. Cancer, you can leave now. You are NOT welcome here in my body".   Of course, I cried. She is just so brave and so smart. Such a kind and wonderful little girl. Thank you again Danny Thomas for giving us this chance at a brand new start at an incredibly fulfilled life. We are blessed.

                                                    I love you sweet pea.  You are so brave.

PGA Field trip - Lots of fun today!

Six months here today. What a perfect day to be driven around on a golf cart! It was sunny and in the low 80's. Just beautiful. Our St. Jude bus arrived at the Golf Club House and we were greeted by many happy faces. It never gets old seeing so many faces brighten up just being around these amazing kids. This was our school field trip. How cool, huh?

The kids were all given matching St. Jude shirts to wear and then we were escorted to our private tent by golf carts. Inside, there were a lot of lovely Golfer's wives ready to get playing with the kids. They did face painting and once all of the kids had their faces painted, the tables turned and even a few of the golfers came by. Little did they know that eager fingers were ready with face paint for them too! It was so funny! We told them that they needed to play with it on. Can you imagine?

I'm sure there will be lots of great pics up on St. Jude's website soon. I'll make sure and post them when they are up! Look at how BRIGHT that flash is (((WOW)))

                                         
                                      Can you guess what she wanted painted on her cheek?

                                                     Of course!  A white kitty cat...

These were the two golfers that let the kids paint them silly. It was so funny! Anyone recognize the football player in the right of this picture (blue shirt)? He plays for the NFL.  I am probably the worst person ever to spot celebrities! Especially when it comes to sports.  I was told the golfers names twice now and have already forgotten! Ugh. Well, they will post it on St. Jude's site once the pictures are released.

             Kayla and one of the player's wives made a very special necklace for our friend Angiel

                                                                Angiel loved it! :)

Once the face painting was finished, we headed outside to sing a very special "Happy Birthday" to Zach. He was not feeling well today. Some days these kids try and tough it out so as to enjoy special events like this. Some days, the body just says "no".

Look at how BEAUTIFUL it was out here though! So pretty. I can't even imagine how much these houses cost! After one of the rounds, the people who live at the house on the right in the 3rd picture walked to the edge of their property. One of the players finished his shot and walked over to them to give hugs.

                The banner on this house says "Congrats St.Jude for 50 lifesaving years!"

Here is something funny. You know how they always hold those "hush" signs when the guys are about to hit the ball? The signs here actually say " HUSH Y'ALL". I'm not kidding! I wished so bad that I had a camera that would zoom that far.

After this, we got to ride in the golf carts again over to the dedication of a FedEx plane which is a huge sponsoring company of St. Jude. One of the former patients, McKaylee's name was painted on the side of this pane! It was so exciting for her to see it! Her dad works at FedEx. It was very cool. What an adorable little ham she is!!!! The crowd was roaring for her. So adorable.

We arrived back at the Target House to see that we had received a JoyJar from Jessie's foundation! Kayla was SO excited.

We continued our down time playing in the library.  It's starting to hit me how much we will miss our friends here.

Today, we had such a wonderful time. Just the two of us girls. It was so great to get out of the hospital and enjoy something fun before we go inpatient for our 4th round of yuck. I met a woman on the bus ride there who has been at St. Jude since 2008. You won't believe this.  She has 5 kids (that's not the shocker) 3 out of her 5 kids have cancer. Two of them are twins, and the third warrior is only 10 months old. AND if that isn't just awful enough, she (the mom) had Hodgkin Lymphoma two years ago. Can you even imagine? So, I will hold that precious wonderful woman close to my heart when I am having bad days. I will remember her story and be just... well.....? Grateful.

Day +20 and almost 6 months!

We decided while changing into PJ's that we needed to take a picture of this. The inside is signed by all of Kayla's friends at Good Shepherd. We love this! Thank you friends :)

Hello friends! It's a late night blog post here and then off to bed.  We have a busy and fun day ahead tomorrow.  Tomorrow marks the 6 month anniversary that we arrived at St. Jude. 6 months!!! Wow.

Kayla is doing great. Her spirits are still very high. She is counting down the seconds until she can be admitted inpatient for her final round of cancer kicking chemo. This kid is ready to go HOME. She told the nurse today that "she just needs to go home, see her friends, see her meow-meow, and then she can come back".  We all got a good chuckle out of that one.  Wouldn't that be nice?  Her numbers are still all ok shocking us that she didn't have to stay getting any blood products today. I thought from her coloring and her sluggish energy that she was for sure staying today, but I was happily wrong.

Anthony is doing great! He eagerly makes friends everywhere we go. There are no age limits. He will go up to the elderly and talk their ears off (which they usually love). He will even go up to babies to see if they are talking yet... basically anyone, any age, any gender is his "friend".  Today, he had a great time riding bikes all over the play ground and runny like crazy with his friend, Christopher. In the middle of a very aggressive bike race, Anthony stopped his bike, insisted Christopher stop too and got up to walk towards him. We were all watching wondering why the abrupt stop? It was just at a very strange time in the chase.  Anthony stood up, walked over to Christopher and stretched out his arms as if saying hug me! Christopher stood up and accepted Anthony's love. It was very sweet. That boy has BIG feelings. He loves hard, hates hard and is just a big bundle of energy!

Tomorrow, Kayla and I are going on a field trip of sorts. Just the two of us, which is great!  We are meeting at 8:45am and taking a bus with other St. Jude kids to meet with some pro golfers wives for some fun. I have heard there will be games, face painting and lunch. I will snap photos for sure. I'm sure it will be a lovely time! Kayla is really looking forward to it.  So, off to bed I go!  Night night all...

OH wait!!! I almost forgot!!!! I wanted to share the PSA video that Kayla was in. Remember the first "Moments" commercial that Kayla and Denny were in? It was shot the day Kayla got released from her very first round of chemo? They released it! I have been sharing it on FB, and I really want to make sure everyone sees our lil' superstar. She was SO tired during this shoot, but did amazing. In true St. Jude style, they will make you cry. So grab those tissues and look for Kayla. She is near the end. You will also see our friends Phoebe and her dad (reading a story on daddy's lap saying to enjoy their last moments together... which thank goodness, Phoebe continues to amaze us all and is doing fantastic!) and Angiel who is with her mommy Damaris who has been given "hope" at St. Jude.  Also, Grace and Shayla were featured. I love these kids!!

Click here to watch Kayla's first TV debut! :)

Brushing those pearly whites before bed! (her bumble bee weighs almost as much as she does)

                                                                   Good Night! :)

Preparing for the storm to come

Yesterday, we had a very busy and fun morning here in Memphis.  The team at ALSAC was shooting another commercial to bring awareness through their Partners In Hope Campaign.  They loved Kayla last time and thought she might have fun taking a part in their second add that should air in July some time. Just in time for us to hopefully be planning our trip home!  Yes, Jenny, I'm knocking on wood right now! ;)

This time was a much more fun experience because Kayla's counts were high and she wasn't so sick! Her energy is still pretty low and she gets very tired, but we were all so proud of how wonderful she did. Our part is a skype session, which you all know by reading this, just how important it has been in our experience here. SO many families are not able to be here together and rely solely on Skype to keep them connected. For us, we have enjoyed it to be able to see other family members and friends. Mostly, it has been a lifeline for me during the inpatient stays when Anthony is not allowed beyond the fishbowl of the BMT (bone marrow transplant) floor. I get very testy,  ok, TICKED off when I don't have enough skype hours logged in just watching Kayla. Being able to listen in and hear what's going on is the only reason I don't go completely insane during those 5 days.  Thank goodness this is the last round!!!

Ok, so I just went off a little bit... Our part was a skype session. Breathe Annie, breathe. In and out. Sheesh! I like skype. Ok, I hate it really... but love it for those 5 days. ;)  We loved that they took a model Target House room and set it up with all of these adorable props! They used 3 of the paper flower decorations from the Mother's Day celebration to hang above "Kayla's bed". They decorated the room as if she would be living in it. It was ADORABLE. Complete with a lava lamp that she oodled over immediately upon entering the room.  There are a few ways the scene might go, but we are guessing it will be Kayla Skyping dad telling him how much she loves and misses him.  Saying her prayers because she is tired and is about to fall asleep.  And then eventually falling asleep with the Skype still running. I walk in, tuck her in, kiss her on her head, tell her I love her, and then say "good night Daddy" and turn the computer off. It's really really sweet! Kayla did incredible and the crew, especially Rick (whom we love now) seemed very very happy with how it will come across. I think it helps knowing how important that computer is to us here. They even used my computer in the scene. As a special present, Kayla got to keep a prop... the beloved Lava Lamp! We will cherish it forever along with all of the people who keep the fundraising going. I am telling you, these people are so incredible. So genuine. So gifted. Truly dedicated to helping St. Jude stay funded and ultimately find our cure! They take their time with the kids and families making sure everyone is comfortable at all times. No one ever rushes you and they just find ways to climb into your heart.  We are blessed to be able to be a part of something so incredibly moving. It's a moment of our lives we will always cherish and never forget!

 

Today and tomorrow we have nothing on the schedule hospital related. As you can imagine, we are enjoying every second of it. Kayla still continues to get sick a few times a day, but it doesn't hinder her spirit.  I am finding myself so sad about leaving some of the families we have become close with over the past 6 months living here (and counting).  The friendships we have made here have been more like getting extended family.  We continue to find the blessings in all of this, and that is a huge one!  There is just so much to be grateful for. We are also so very grateful to all of you who continue to follow our journey and keep us in your thoughts and prayers. Not only have your encouraging words, emails, comments, cards, donations and even a few beautiful CD's,  etc. have helped to keep us feeling so strong & loved, but we know they have also helped to lead the hands and hearts of all of the doctors & nurses here taking such incredible care of our special girl! We are just so grateful. So so so very grateful.  

If you aren't on Facebook, I really want to share with you this very encouraging and powerful blog entry written from a dad who's child, too, has battled cancer. It's so well written. Denny and I have now read it several times and can't believe how well he describes how this feels. I especially feel so empowered by the end. I changed the font color for that reason. I love it.  Just so true. Good night everyone!

NOTHING HAS CHANGED. EXCEPT FOR EVERYTHING.

 

When you see news footage following a horrific natural disaster, storm, fire or other destructive event you'll usually hear one sound bite from a survivor. Amid all the loss, destruction and devastation there is usually one person left standing and despite the complete and utter loss of everything they have ever owned they will say something along the lines of:

"The only thing that matters it that everyone got out.  We are all alive and the 'stuff' can always be replaced".

My own personal storm, my own natural disaster, my personal hell on earth was the day the home my infant lived in was engulfed in flames by the word neuroblastoma.  

Since that day I have tried as hard as I can to climb through the fire, to see through the smoke and crawl through the debris in an attempt to find him and carry him out before he is killed. To be able to stand there with him after 'the crisis' as a survivor and to be able to only care that he is alive when the odds are just so stacked against him.

Childhood cancer is filled with kids who are warriors or angels and a lucky group of survivors. Will is still on treatment but ever since we have returned home from Grand Rapids where his PET scans showed that his tumor - while still measurable on CT - was barely active on the PET scan a switch has flipped in my brain.  

I am now parenting Will more like a survivor parent than a warrior.  I am still keenly aware of his disease and the risks to his life but I now worry more about a secondary cancer from his treatment.  I consider all of his radiation exposure and therapy and what that means for longer term issues. I now think of the future as consisting of more than the just next 21 day cycle of treatment - or the three month gap between scans.

Nothing has changed - other than that little switch in my mind - and for me that has changed everything.

When tearing into the burning building fueled on fear and adrenaline and worrying only about saving your child you fight through pain.  A gash to your leg, a burn to your arm or a broken bone as you inhale smoke in an all or nothing push to get your child outside to safety is not going to make you turn around. You can tend to your wounds later.  You must compartmentalize the pain and fear and the horror of all you see because you've committed everything to saving your child. 

As dawn breaks I have begun to sift through the ashes of the 7 year fire that has been neuroblastoma.

Will is not 'cured' - he'll never be free from the perpetual shadow of this disease and treatment.  It will take him from us one day.  However, I have removed my mind from the inferno way of life and I now I'm left to sort out what I'm supposed to do now.

As I go through the ruins I continue to uncover all of these bags of pain, suffering and grief that I was forced to bundle up as they happened.  And now they sit bulging with the malevolent promise of unrealized grief and unshed tears.  

I know I can not unleash it all at once.

I know I can not ignore them forever.  

I need to lighten the load I've been carrying and right now is the time to do it thanks to Will's quality of life - and my own. And as I sort through the PTSD bombs all around me I'll do my best to come up with a new way to live the life of a cancer parent and caregiver that is hopefully less suffocating.

I have begun the heavy lifting of personal cleanup by unleashing these bags of poison - at times deliberately - while other times it is unintentional.  What I have discovered is that this new new mind set is free of the extraordinary hyper vigilance that allowed all of this pain to be compartmentalized to begin with.  And without my brain being on high alert to protect itself from further emotional trauma this means that at times a simple thought or memory can detonate one of these PTSD bombs.

Regardless of how or why I choose to deal with all of this ignored emotional baggage I feel lighter afterward - better somehow - in a way  that I can't describe or even understand.  But nonetheless better and that makes it easier to lift the covers on what I've intentionally ignored in order to try and stay afloat.  

And with each day I realize just how much I have changed. 

I realize how different I am - and will forever be.  

And most importantly I realize that I don't want to live my life as a scared parent anymore.

There is no going back to who I was - so I need to figure out who I want to be.