Throughout this journey, I have had some dark times. Some have been shared through either Lauren's CaringBridge journal or here on this blog. Some of it has not been shared. I think it is important for other parents/caregivers to know that they are not alone and that while we try our hardest to remain upbeat and positive, we also have times when the dark horse shows it's ugly face.
Sharing some of this is very hard because it shows our vulnerabilities. We are not always the strong person we portray. Sometimes, it is easier to put a smile on my face and pretend, rather to admit what I am feeling. The fear becomes unbearable at times, but one thing that has remained constant is my HOPE. When presented with ONE option from our conventional team once we found out that her disease was growing during chemo, I never lost HOPE. My hope comes from my LOVE for this girl and the purity she has in her heart. She inspires me in so many ways.
This saying reminds me of why we do what we do...why we advocate!
Three weeks ago today Lauren and I were on our way to Alabama for her first ablation procedure. Nervous, but hopeful, we had NO idea how this part of her journey was going to turn out and let me tell you, the "unknowns" are the scariest part of a cancer diagnosis.
Lauren was scanned prior to the procedure (the machines used in this facility have 60% less radiation, allowing for multiple scans without risk of radiation exposure) and we were told that the small nodule that we went back and forth on for the last six months was indeed a nodule and now instead of two nodules, there were three in the left lung. There was also some growth in the nodule in the right lung, not to mention it was sitting in a very tricky place close to the heart and esophagus.
The procedure was done through the back and was only about an hour long using only a local (lidocaine) and sedation. Knowing the right lung was going to be challenging, he chose to do it first. He said he was comfortable that he got about 75% of it using ablation as its location and proximity to the heart made it difficult to freeze because the heart keeps everything warm and heated. He scanned her before we left that day and said that the tumor looked pretty beat up.
The following day we went in for a follow-up scan. I knew in my heart of hearts what I wanted to hear, but always go in with a realistic mind set. When he said the other part of the tumor that he couldn't ablate looked beat up too, my heart skipped a beat. This really was working and with minimal side effects (VAT surgery to remove these tumors would have been a minimum of 2-3 day stay in the hospital)!!! She was sore for the first week or so but gradually got better with each passing day.
We arrived home the following Friday to rest up for a week and then go back to Alabama for the second part of this procedure, ablating the remaining tumors that were in the left lung. We were told that the risk of a pneumorthorax was higher as he would be "poking" her three times but were assured that it could be handled in clinic.
Over the week that we were at home, we increased all of her supplements concentrating on anti-inflammatory in trying to help the right lung heal. We slowly decreased the pain medication and by Monday following her procedure, she was off all narcotics completely. The only residual side effect was the lidocaine injection. Since he used so much, she was still a little numb (more like pins and needles) in the area under her right breast around the ribs.
Iscador was ordered as well as TM, the drug we will be using to lower her copper. She will be on this drug for at least two years as we attempt to keep her at a NED status. We need to the recurrences away for this to really work the way we want.
The second of the two procedures was scheduled for last Tuesday but after two CT scans, with and without contrast, we got the news we were hoping for. The remaining tumors in the left lung had shrunk by 75% with the smallest gone completely! They were so small that the doctor didn't think he could even get to them to ablate them. The curious part of the scan was that the right lung appeared to be full of "something". He quickly ruled out tumor progression and leaned more towards inflammation.
When looking at a scan of the lungs, anything white is pretty scary as they should appear clear. After some discussion, it was believed that the white we saw encompassing Lauren's entire right lung was neutrophils, or STRONG white blood cells fighting off this cancer. While we wanted so badly to have a PET CT done (so that we could get a status of the disease and whether it was truly a dead nodule), if in fact this was inflammation caused by the procedure plus the abundance of WBC's present, this inflammation would also light up rendering the scan unreadable and without definitive answers.
Since Lauren is clearly not symptomatic, we decided to wait three weeks and rescan using the CT machine and if the lung looks better, we will have a PET CT ordered. Since we are in this holding pattern, we have also decided to hold off on the TM and Iscador until we know more.
Because it would have cost more to change flights to go home early than to actually stay in Gulf Shores, we chose to stay. We hung out on the beach doing yoga, went sight seeing and enjoyed a painting class paid for by one of Team Lola's supporters, Charla Miley. Thank you Charla!!! And THANK YOU to everyone who donated to our fundraiser. Without you, none of this would have been possible! We are forever grateful!
Yoga on the beach
Painting at Life's a Canvas
Beach selfie
April has been a crazy month and it is about to come to a very memorable end. I started this blog last year after attending the Stupid Cancer OMG! Summit for Young Adults. While the Caringbridge journal was a great way to keep everyone up to date on Lauren's journey, I wanted something a little of my own. I wanted to be able to keep everyone updated on Lauren, but also add a little bit of me. Attending the Summit inspired me.
On Thursday, Lauren and I will be leaving for Las Vegas! This trip would not have happened without a grant from Northern Nevada Children's Cancer Foundation, who funded the travel portion of this trip for both of us.
This is THE conference of the year for anyone age 15-40, diagnosed with cancer and their friends/caregivers. This year, I will be a panelist at the break out session for parents of diagnosed "kids" and I couldn't be more excited to offer some of my expertise on this subject! Stupid Cancer has been a lifesaver for both Lauren and I. The support we receive from the foundation and it's members is undeniably, hands down, immeasurable.
I am also in charge of organizing outings for the attendees under the age of 21. What I am most excited about is Lauren meeting these young people. It's important on this journey to not feel alone and being a teenager with cancer has its own challenges in itself, but having friends who can relate (though I do not wish this disease on anyone) helps Lauren feel less disconnected to her peers.
Lauren on the beach showing how to GET BUSY LIVING!
Lauren and I getting ready for OMG!
SUCK IT CANCER!
I've kept you all long enough, but I hope that you have enjoyed reading and sharing in our journey. We love you all and hope that you continue to keep Lauren and our family in your thoughts and prayers as we begin this new part of our journey.
Peace & <3
-cherri
