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!
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!