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!
We want to wish all of you a very happy Independence Day! Happy Birthday America!!! Stay safe out there troops! SALUTE!
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!
(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🇺🇸
Hello Troops! Yesterday marked the 1 year anniversary that our Jillian was declared NED! Such sweet words, no evidence of disease. We celebrated this milestone with a special night at Chuck E Cheese. She has been asking to go there for over a year and now and it seems like now is the best time to give her this treat. She even made a new friend there!
I apologize for failing to post yesterday as the day of celebration was tarnished slightly by the loss of our beloved dog Sahvin.
Sahvin was our mischievous, blue eyed princess. I fell in love with this wild Siberian Husky 15 years ago when I adopted her from the shelter. But she lived to be 16 1/2 and had a great life. My heart literally broke yesterday when we had to make “the decision”. Multiple seizures left her unable to maintain any quality of life. The girls are coping with her loss in their own way. Jillian said, “oh Sahvin died? She is gone? Poor Sahvin” and continued on playing. Sienna took it a bit harder. She had a special bond with this dog. But she seems ok knowing that Sahvin has gone to heaven and is reunited with her brother Hasek whom we lost right after Jilli was diagnosed. Now we just have our Roxy dog; she will be spoiled rotten. It has taken it’s toll on me in ways I didn’t expect. I had gotten so used to giving daily meds to Jilli and Sahvin. Now, with Sahvin gone and Jilli no longer on any medications, I am contstantly feeling like I am forgetting to do something.
I am trying my best to put and end to two chapters of life and focus on a new one. A chapter with only one dog (for now) and a cancer free life. Back to trying to find another “new normal”. Life is all about change and we all have to learn to adjust. I thank you all for your continued love and support. Now let us move forward and conquer the day!
The second quarter of the year is upon us. As we mentioned earlier this year, the Moore’s “wish” is to shift the financial focus of Jillian’s Army over to serve the greater good. In addition to the need to raise research money for neuroblastoma and other childhood cancers, there is also a need to support those children that are currently in their fight. For those kids, like Jillian, there isn’t time to wait for research to bring a cure or less toxic treatments. They are forced to fight now, often against the odds. An organization who helps to bring some joy and hope to those kids and their families is Make-A-Wish.
When Jillian was first diagnosed and gravely ill, she would tell you that she was going to go to Disney when she gets “all better”. Thanks to Make-A-Wish Southern Nevada, Jillian wished to go to Disney World and that wish came true. You can read the story of her wish, as it is currently featured on the Make-A-Wish Southern Nevada website.
Her trip had to be postponed once due to the timing of treatment and necessary recovery time, but eventually her wish came true in spectacular fashion. Jillian and her family met tons of Disney characters including the main mouse himself, Mickey!
Make-A-Wish is recognized as one of the top 10 charities in three areas: trust, in nonprofits that people are most likely to support in the future, and in brand equity. This good reputation is well earned with 75% of all funds raised going directly to wish granting*. The remaining funds go to fundraising efforts, the management and office staff. A vast majority of their funding goes right where it should – to granting wishes. The best part is that these wishes make a difference! 89% of nurses, doctors, social workers and child life specialists surveyed believe the wish experience can influence kids’ physical health. 79% of adult former wish kids confirm that their wish experience marked a turning point in treatment and recovery.*
From now until the end of June, Make-A-Wish is our Jillian’s Army featured organization. Jillian’s Army is proud to support Make-A-Wish and we are forever grateful for the wish that was granted to Jillian. We hope that you will consider donating directly to them via their website Thank you again for your love and support of both Jillian and all the kids who have been diagnosed with cancer or will be diagnosed in the future. SALUTE!
* Information from Make-A-Wish Southern Nevada.
We had such an exciting and busy weekend. Friday was a fun filled birthday for Jillian’s aunt (and my talented, awesome, smart, witty Chief of Public Affairs) the one and only Paula.
After a fun filled night of cake and karaoke, we had an amazing Saturday morning with the fantastic folks at Make A Wish of Southern Nevada. So many incredible businesses and people came out to Town Square to participate in the Walk For Wishes. General Dad’s employer Mercedes Benz of Henderson proudly lent out a convertible to be the pace car for the race. I got to ride on top with Jilli and Sienna as we led to participants through the route. I had a blast!
Today was back to the busy, hectic life I live. She is supposed to start kindergarten in the fall. But there are some concerns about placing her in a public school with some of the things she has been through. She is showing some signs of immaturity in comparison to other kids her age. And with the public school system going full day kindergarten I am very stressed about how she will do in that environment. So I sought the help of a group called Child Find. Jillian has been through a number of assessments by their experts and today was the big day for us to get results. They have determined that Jillian is eligible for and IEP (individualized education plan). This IEP will not only be good for the remainder of this school year (pre-k) but for kindergarten as well. Due to her medical condition (cancer treatment) and a hearing impairment she is protected by the ADA. General Dad and I are very happy by the outcome of this meeting. This will ensure that Jillian will not get lost in the crowd and she will get the specialized education she needs to get caught up to where she needs to be. I am just hoping that she will still be able to attend the same school as Sienna next year. We will know more in the next couple of days.
Meanwhile Jillian has a cardiology appointment to check her heart and the all important surgery to remove her port on Friday. Send the positive energy and prayers for a good week and smooth surgery. Thank you all so much!