Wishing you all a very Merry Christmas and a happy New Year!!!
2016 is going to be a year of change. Lots of different things going on in our lives. The one thing I’ve been telling the girls is that the one constant thing about life is “change”. Things are always changing like the seasons. And with every season lies a new adventure waiting to be discovered. It can be scary, it can be sad but it can also be exciting …. It is what you make it.
I will leave that topic alone for now…
The girls had another wonderful Christmas spent with family. Santa was certainly good to them this year. Now…. What to do with all these toys????? Ahhhh!!!!
Jillian is still doing great. She does not go back for labs until January and scans are now every 6 months. She had a check up on her eyes and we found out that she needs glasses. Not a side effect of chemo… Bad genetics!! Lol. But she doesn’t seem to mind the idea of wearing glasses. Her eyes aren’t too bad, she just needs a little help with distance.
We also got an extra special Christmas blessing this week! I am a great aunt for the first time!!! Jillian and Sienna are super excited and can’t wait to meet their new baby cousin that was born on Dec 23rd. Welcome to the world Quinn Valerie Stone!!! And to my niece Kayla and her hubby Zac… Jesse and I are super proud of you both. We know you will be great parents! We love you!
I continue to thank you all for your love and support! Hope you had a fabulous holiday and please be safe out there however you ring in the new year!
It’s been one year since Jillian’s treatment ended…. And once again Dr. B wants scans. Well…. She is all clear!!!!!! She has been NED for a year and a half, done with treatment for one year! And continues to beat this monster! Our warrior is strong. And it’s because all of your love, prayers and support…. Thank you for continuing to follow our story.
Day 29 and Day 30 of Childhood Cancer Awareness Month. Jillian is getting scans to make sure that she is still NED (No Evidence of Disease) Even when kids "win" the battle, the fight is never really over. The fear of relapse, side effects from treatment, and families that suffer from PTSD right along with their survivor. Don’t just go Gold for September. Live Gold all year long for these kids and their loved ones.
What is an MIBG scan?
"MIBG (metaiodobenzylguanidine) scans help locate and diagnose certain types of tumors in the body. MIBG is a substance that gathers in some tumors, particularly neuroblastoma tumors. When MIBG is combined with radioactive iodine (tracer), it provides a way to identify primary and metastatic (spread) disease. MIBG scans are helpful for locating both bone and soft tissue tumors.
The test is performed by injecting a small amount of radioactive dye (tracer) through an IV. Pictures are then taken under a scanner that is similar to a CT scan. The scans may occur 24, 48, or 72 hours after the tracer is given. Doctors are looking for bright spots on the scan, these indicate cancer cells.
An MIBG scan does not hurt, but it may be difficult or uncomfortable for a child to lie still for the test. Young children may be given a sedative to help them lie still for the entire test. A special medicine is given to protect the thyroid gland from the radioactive substance in the tracer."
-Definition from CureSearch.org
I still don’t see enough gold ribbons and awareness from te media that I hoped to. September is Childhood Cancer Awareness month, represented by a gold ribbon. But for some families like ours, every month is. Do your part as one of Jillian’s Army’s soldiers….. Spread the awareness …
KIDS GET CANCER TOO – WE NEED A CURE!
OUR CHILDREN ARE WORTH MORE THAN 4% FUNDING
Come on down and help out the cause!!!! Join me in a song!!!!
P.s. Happy wedding day to fellow cancer warrior Krystal Simpson Bane and her handsome new hubby Will Bane! It was a beautiful wedding, congrats!
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!
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!