Jillian's Army

A site to provide updates on Jillian Moore's fight against Stage 4 Neuroblastoma Cancer

Return To Strong

You can imagine my surprise when I got an invitation in the mail addressed to Jillian from the Wilmot Cancer Center in Rochester, NY. In case you forgot, that’s the place she had her stem cell transplant over a year ago.  They have an annual survivors picnic that she is now a part of.

 I thought it was important, not only for her to return, but for my own mental health. I want to see all those who saved her life; I want them to see how good she’s doing. I want to walk those halls again and remember the smells and the pictures on the walls. I want to see the scenery again outside the windows, this time all green and beautiful- not snowy. I want to go back again triumphant.The four of us made the quick weekend trip and spent Saturday in Rochester. We went to the picnic and were happy to see Dr. Andolina, Jillian’s oncologist in NY. We also  were lucky enough to see other great people we met while we were staying in the  hospital. Then it was off to Strong. 

We returned to WCC6 and the flood of memories came back. It was almost like I had never left.  There were a few people there that we remember. Her nurse Christina was surprised by our visit. And of course there are always those you really want to see that either weren’t working that day or weren’t available. Maybe we can catch up with them next time. 

Next stop, a big surprise for the family at Uncle Mike’s house… We will just crash his BBQ! They didn’t know we were coming so tears of joy is an understatement! So cute to see the girls playing with their cousins that they never get to see…. They pick up right where they leave off… Like they have never been apart.

Sunday was spent with my brother Paul in Buffalo. We played tourist in Niagara Falls, rode the Maid of the Mist, ate ice cream and then went over the bridge to Canada. The lights on the falls were absolutely beautiful! Then the fireworks show over the water was an impressive surprise ending to our whirlwind trip. 

Monday morning we had a super early flight home. The girls went to school- late of course.. But at least they went! 

To all those in our NY brigade… We will see you next trip… Thank you!!  Miss you and love you NY Moore clan!

SALUTE!

CIC MOMMA

   
    
    
    
    
    
    
    
    
    
   

First Day of Kindergarten 

Hello troops! Today has been a very emotional day for our family. Our little warrior has started a new chapter in life; a very big milestone to celebrate. Jillian started kindergarten today and her big sister Sienna started 3rd grade. Both girls are in school full time at Newton Elementary School.  I took them to school and left with tears. Tears of joy. Joyful that these two won’t be fighting all day with each other! Just kidding… Two years ago we all thought we would never see this day. We thought she wasn’t going to survive.  But here she is, a little girl full of life and energy. She was so excited to be a big kindergartener. Her teacher told me that she got tired after lunch and wanted to go home. Even though full day was a bit long for her, she still enjoyed it. After school we enjoyed Slurpees as a treat and then the girls got their hair cut. This is another milestone for Jilli. The last time she had a haircut was when it had to be cut off before the chemo could have a chance to make it fall out. Once again… An emotional day.

Now the girls are home going through their homework packets with General Dad and enjoying being home. An early bedtime will be calling soon and tomorrow we do it all again. Thank you again for all your love and support troops!

SALUTE!

CIC momma 

    
    
    
    
    
    
   

Julian’s Joust

Another beautiful Saturday morning here in the desert. The girls and I are getting ready to leave for our last summer vacation to California with grandma and grampa for a week. School starts soon. Our little warrior will be starting Kindergarten like a big girl. She will be experiencing so many new things and learning how to read and write. These things most take for granted. But still I take a moment to grieve…yet again Neuroblastoma takes another young life. He has a FB page I have been following called Julian’s Joust. He fought so bravely for so long. But his time on Earth ended last night. Fly high with the angels sweet boy, you fought well! SALUTE!

CIC momma

Time for Scans Again

As most of you already know, last week was scan week for our warrior.  The days leading up to and after are so stressful on our whole family. We think about all the what ifs; and we know the stats on relapse. Our imaginations are never a good place to be during these times. Any problems going on in our personal lives are amplified by the horror of having to possibly face dreaded treatments again. It makes us all a little more edgy…. A little more needy. So I apologize if we seem like we’ve lost our minds at times… We have! Waiting days for scan results is enough to drive you mad! However, today we have them!

Our Jillian remains CANCER FREE!!!!!! 

Yes… I said it… N.E.D. No evidence of disease in her body still! Thank you God… Our prayers continue to be answered! Thank you troops for your continued love, prayers & positive energy!!!

CIC momma, General Dad and the rest of the commanding team of Jillian’s Army- SALUTE! 

    
    
    
    
    
   

Today is July 11th….

Today is July 11th… I’m sitting here watching my girls play together in the living room. Jilli with a full head of hair again and willful spirit that won’t let her big sister have her way. Sienna wants to go do something else and Jilli yells at her in her bossy way, “PLAY SHENNA PLAY!” Jilli still has that lisp when she talks; mainly from the hearing loss that will never return to normal again. Adult chemo has done it’s damage as well as it’s job. I hate it.. I hate everything about it. I hate seeing all the other families go through this too. Next week we face scans again so it all comes back to me like it was yesterday. My brain goes into fight mode. The walls go up as I prepare to face the reality again. She is strong but not invincible. Neuroblastoma – the enemy- is relentless. It could come back. I have to mentally prepare myself for that reality. And pray like hell that it doesn’t.Two years ago today life as I knew it changed. I guess you can say we are the lucky ones. Was it luck? Eenie meenie minie moe…not your child, not your child….but MINE! Why? Why Jillian? Two years ago she was on the edge of death. So why did she survive? Why do some make it and others don’t? It’s not fair. I feel so selfish when I pray that mine will be the one out of say 5 that lives with no relapse and no problems. Why can’t they all? Reading back through my journal I held out hope up to this night 2 years ago that they were wrong about everything…it was a stupid mass that they could remove and we could just go home. It wasn’t cancer after all and THEY WERE WRONG! But they weren’t.

In my journal I wrote…

“Feeling as hopeless as it gets. The worst news..It is Stage 4 Neuroblastoma cancer. 50%-60% cure rate? Flip of a coin basically. My baby could live…or she could die. My life as I know it has changed. My whole world has just been hit by a nuclear bomb. There is nothing… I see nothing but smoke and ashes. How do we go on. We begin to fight that how. We are now at war with an enemy within her little body. We have all been drafted into an army to fight a war we never asked for. We are all part of Jillian’s Army. Day 1 of chemo starts tonight.”

I am thankful to the Almighty every single day that she survived and that she is still here. But the PTSD and the scars run deep. I know I will never be the same. I work daily to heal my wounds and keep my strength. Big THANK YOUS to all of you out there who make me laugh and smile and give me a “happy place”… music, laughter and craziness is the best medicine for me. Fuck you cancer!

-CIC Momma

Happy 4th of July

We want to wish all of you a very happy Independence Day! Happy Birthday America!!! Stay safe out there troops! SALUTE! 

   

Happy Father’s Day and Summer!

Well hello there troops! Sorry for the absence; but summer is here and we are keeping very busy. Our warrior Jillian has successfully finished her pre-k class and will promote on to Kindergarten this fall! She is doing remarkably well.

She continues to be seen by Dr.B on a monthly basis for labs and urinalysis. He is watching for subtle changes that could signify relapse. So far so good. She is very healthy. Alrhough she did start receiving a few vaccines back in March and we did a titer to see how well her body is responding to those. Unfortunately she is not making the normal amount of antibodies to protect her from those diseases. In a nutshell…. The vaccines are not working in her body. Sometimes that happens after a stem cell transplant I am told. Which is a big reason why OTHER people need to be responsible and vaccinate their children. Jilli will be starting public school again and I would hate it if she caught something very preventable. Rant over…  

She is scheduled for her next big scans on July 20th. And I have been following a few other warriors that are having a bit of a challenge in their fight. One has just relapsed, one has been placed on hospice and another found out current treatment is not working. Needless to say, my anxiety level has been raised exponentially. This first year off treatment is so critical. I just want my baby to stay cancer free.

So… On a lighter note, we must wish our General Dad a Happy Father’s Day ( hey, better late than never) It was a busy day of food, family, beer and the pool. Our little Jilli has become fearless in the pool lately and that scares the crap out of all of us! She insists on holding her breath and going under water- no floaties! So she starts private swim lessons on Monday. 

For now, it’s all about keeping Sienna and Jillian busy and not fighting with each other! We wish you all a very happy summer! Stay cool out there!

Salute! 

CIC momma 

         

Remembering those who gave all…

(Sorry for the late post, technical difficulties) …on this Memorial Day we are remembering what is important in our lives. We are blessed to be cancer free and going about living “normally” but our freedom is not FREE! Thank you to those who have made the ultimate sacrifice for our freedom🇺🇸

Our Warrior Turns 5

Wow what a day! So hard to believe my baby is 5 years old today. So much has happened in 5 short years. I am just grateful she is alive to celebrate this milestone birthday. She is a miracle, she is my hero, she and Sienna are my everything! Happy Birthday my little love!!! 

CIC momma 

                   

A Day at the drags

As usual my life is one busy day after the next. I do want to share an incredible experience we had last weekend. We were invited by Make A Wish of So NV to go to the NHRA drag races last Saturday.  Not only did we get to watch some intense cars go crazy fast down the track, but we also got to meet the driver of the Make A Wish car! Tommy Johnson Jr was so nice! He took the time to visit with us, take pics, sign autographs and hang out with us in the hospitality tent near his pits. We were all a little star struck! I wish he would’ve won the finals here that weekend. Oh well next time! Here’s to you Tommy, you have some new fans! SALUTE!

CIC momma 

         

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