Troops… Jillian’s MIBG results are in! Our warrior remains NED!!!! Whoohoo!!!
Good morning Troops. Today is day 2 of Jillian’s scans. The C/T and 1st set of MIBG were done yesterday and today we did the second set of MIBG scans. I am pleased to already have the reaults back from the C/T.
Results: Stable with no new evidence for new disease!
Thank God! Now we wait for the results for the MIBG…. positive energy and prayers and good thoughts please!
Good morning troops! Today we welcome the first day of spring.
With spring always comes a sense of renewal…. changes. The weather changes, scenery changes and sometimes life changes. For this family, change seems to be an constant event. I have since gotten used to this creature we call “change”. Change is our new normal in this life. And after all, “Normal” is just a setting on the dryer.
Our warrior has scans coming up this week. As much as I am hopeful and confident that these scans will continue to read NED, the reality of this disease still sits in the back of my mind. I follow the pages of the other children fighting. I read the blogs and I read the comments. I have seen pictures of the ones that have relapsed and the ones that have gained their wings recently. I wish I had a more professional or eloquent way to say it but, this plain just f**king sucks! My thoughts and prayers, strength and energy go out to all of you still fighting this battle. And I hope to have positive news from Jillian’s scans soon.
Until then, we will enjoy the sunshine and the beautiful park days. And I also must wish a very happy birthday to Jillian’s Army COPA (chief of public affairs) and Jilli’s Aunt Paula… Salute!
Hey Jillian’s Army!
Hope you are all doing well, it’s been awhile and Jillian is doing great. She is fresh back from a weekend spent at Knott’s Berry Farm with General Dad and her sister, Sienna. While she was having fun, I saw on my Facebook timeline that St. Baldrick’s featured Jillian as their “honored kid” on Saturday. It was also on Twitter and Instagram, and probably other social media networks I know nothing about.
We have posted before about how great St. Baldrick’s is and how they fund research and have even given grants to the clinic that Jillian was treated at. March is their big fundraising push and this Saturday, March 4th, there will be a HUGE shaving event at McMullan’s Irish Pub. This is one of the top St. Baldrick’s events and there are 427 participants scheduled including a cool guy I know named KC Camis. This is KC’s first shave and he is doing awesome so far. If you’d like to donate to KC’s shave, you can do so by reading this post on the Jillian’s Army website and clicking here.
We are all so blessed that Jillian is doing well. St. Baldrick’s is a big reason why there is more hope for kids diagnosed with cancer than ever before. We appreciate them and are proud that they featured Jillian. We hope everyone at McMullan’s and the Bald By Design team have a great shave on Saturday. We give them all a Jillian’s Army SALUTE!!
– Aunt Paula
Better late than never! Due to technical difficulties on our site, my post from Thanksgiving never posted. So here is a new one!
Hope everyone had a safe turkey day. The girls had an early dinner with me and my family. Then General dad picked them up for an evening with his family.
Our warrior is doing very good. She is enjoying a normal life. As times goes on, she seems to be forgetting everything she has gone through. We have now graduated to scans AND labs every 6 months. So April we will face the uncertainty once again. It’s a great feeling knowing she is no longer sick. But the memories still haunt us. Every time she complains of leg pain… or a head ache… panic sets in. My heart knows she is fine but my head questions everything. It’s definately not a state of mind I wish for anyone to have to live in. But we do our best to live in the “now”.
And “now” is making cookies, wrapping presents and waiting for Santa… for tonight, the magic will happen.
Merry Christmas Eve troops!
The last few days have been extremely stressful on this whole family. September 21st marks the 2 year mark that Jillian has been off treatment. And that was also scan day as was the 22nd (they do scans for two days here). Not only does the anxiety of making our girl drink the contrast and endure the iv pokes make us crazy, but then the waiting for results…. Sometimes it’s too much to bear. We have seen kids like Hazel relapse after being good for two years. It haunts us. But after some relentless phone calls, we were able to get the results very quickly. Our brave girl remains NED! Sigh of relief. We are good for another 6 months.
September is coming to a close and there are still other children facing brutal treatments and relapses… my heart hurts for them and their parents. We need more awareness. We need more funding to find a cure. All the Vegas and Henderson troops can come out and support The Ronan Thompson Foundation next Wednesday night. Zoo Karaoke will be hosting a benefit to raise funds for this foundation. They are making great strides in there quest for new treatment options to put an end to Neuroblastoma. I will be there singing my heart out for my little warrior! Thank you all for your love, prayers and white light sent our way. We felt it!
P.S. Jillian’s scans are clear!!! No evidence of disease!!! The karaoke benefit show is at Sunset Downtown at 203 S. Water Street and if you can’t attend donate here Zoo Karaoke Benefit
Good morning troops. I am enjoying the cooler fall-like temps!!! And as summer slips away once again, I realized I never posted pics from the girls trip to the beach this year. We went with grandma & grandpa to the timeshare in CA. While we enjoyed the sun and the sand, we also went to Universal Studios.. HARRY POTTER WORLD!!! Yes, we are huge fans. Sienna belongs to the Gryffindor House, I – Ravenclaw.. Jillian… Any guesses??? She should have been placed in Slytherin, but chose Gryffindor like big sis. We had a blast! Enjoy the pics!
Before we get inundated with pink ribbons everywhere come October, let us take a moment to go gold now that it is September. I am seeing more support than ever before for our kids. But it’s still not enough. Awareness leads to funding and funding leads to new drugs; eventually leading to a cure. Spread the word…. September is childhood cancer awareness month. Are you aware???
I know it’s cliche to have mixed emotions about the first day of school. I walked Jillian and Sienna to their line up dots on the playground this morning. Sien found her friends as usual. And Jillian gripped my hand tightly as she waited for her new teacher to lead the line of students into the building. I had to let go as she walked into the building…and of course I couldn’t hold back the tears. I feel so silly crying. But the truth is, this is yet another moment that was almost taken from me… From her… From all of us. I don’t take any of these moments for granted. So have a Kleenex and an adult beverage….Here’s to the first day of school! Cheers!
Today the girls went to their school to see their classrooms and meet their new teachers. They are both excited to go back to school. Jillian is starting 1st grade… A milestone I thought would be taken from her and the family. I loved watching her explore her classroom and sit in all the different seats wondering which one she will get. She is excited that she is on the “big kids playground” this year. She is excited to make new “best friends” and she promised me she wouldn’t cry this year; wish I could promise the same. Her big sister Sienna starts 4th grade and is just happy to get to see her friends again and have new clothes. My precious Sienna was just a baby starting first grade when Jilli was diagnosed. I feel like I missed out on her first grade year.Just Another thing cancer took from our lives. But here we are moving forward, let the school year begin and new memories made.