Hi everyone. It’s been a long while coming, but I want to update everyone on my sweet Eleanor. The past six weeks or so have been tumultuous, and there has been much coping and processing and just surviving. But right now, in this moment, I feel like I can breathe and share what’s been going on.

About a month and a half ago, while taking Jack and Evelynn to their homeschool co-op, Eleanor’s speech suddenly became garbled and non-sensical (which I’m not sure is a word, but it works). Once we got home and out of the car, Eleanor became very agitated and was moving all over the place, but I noticed her right side seemed to have stopped working. At that point, I became frantic and called 911. We were taken to VCU, where for many hours we assumed she had suffered a stroke. To rule other things out, she had CT scans and an MRI. Much to our devastation, these scans showed that her cancer was already coming back, only a couple of months after treatment had ended.

To be clear, Eleanor was never cancer free, but there was still a possibility of her living a reasonable life with the small amount of cancer remaining in her body. We had also been talking with our specialists in DC, discussing the potential for her to take part in a new, cutting edge trial that would seek to research her own tumor tissue and search for treatments on a molecular level.

At any rate, given that she had received the strongest radiation and chemotherapy protocol safe for her age, we were suddenly forced to face a very scary prognosis with the cancer coming back so quickly. In the midst of all this, and just as doctors were prepping her to have an EEG to rule out seizures vs stroke, Eleanor suffered a massive seizure in my arms. She had what was called an Apneic Seizure, which means she stopped breathing. They called a code, and her room filled with nurses and doctors. For what seemed like hours, but was really only minutes, ICU docs tried to resuscitate her, but were unable. Finally they asked if they should intubate. We were in a state of shock and I remember saying, “Yes! Do it!”.

So she was put on a respirator and remained that way for about a day and a half. During this time, she began anti-seizure meds and steroids to help with swelling in the brain. The situation was grave, and there was real concern she would not be able to successfully come off the vent. My sweet older babies and close family came to visit and love on her, and cover her precious head in kisses in case the worst was to happen. Everything felt surreal and I focused on literally one breath at a time. Be with my baby and breathe. That was all I could muster.

The moment came and we removed the breathing tube. My sweet girl was ready to fight and surprised us by having no trouble taking over respirations. She had also regained much use of her right side since beginning the anti-seizure meds, which was encouraging. Still, she was incredibly fragile and, after meeting with several doctors and support staff, we decided to take her home on hospice care. Because of her fragility, the awful news came that she was no longer eligible for the trial. That was extremely hard for me to process, as it had served as the last shred of hope in my own mind.

Once we were home though, this interesting thing started happening. In DC, they used to call it “Eleanor being Eleanor”, and in this case it meant that the fragile child who had just come off a ventilator started acting more and more like the (relatively speaking) hearty patient she had been before the seizures. I sent an email to Dr. Packer to see if the trial could potentially be an option again, but he didn’t seem enthusiastic after all she had been through. Two weeks went by and Eleanor continued to do well. At this point, I had our oncologist from VCU call Dr. Packer and give him an update. He was skeptical but gave me a call, and the very next day we were in DC letting him see for himself that Eleanor was quite strong and feisty. He was in disbelief but agreed she was hearty, and just like that, the trial was back on the table- and that tiny shred of hope was restored in my mama heart.

Things needed to move quickly so it was only another two days before we came back to DC have her biopsy. The surgery was not without risk, but they were successful in removing enough tissue for the trial. The biopsy required a six inch incision across her head, but she has healed really well, for which I am extremely grateful.

Y’all. It has been a ride. I’m not naive and this trial is such a very, incredibly long shot. There is the possibility they may not find anything that treats her tumor, or the chance that what they find are the same meds she’s already had. Always, there is a chance the cancer will spread before we even have the results. And ultimately, this trial only seeks to help reduce the effects of, but not cure the cancer, meaning it would “only” provide her with a better quality of life for longer. BUT I guess we are doing something, and that beats nothing, in my book.

So where are we now? Well, Eleanor is very tired lately, and sometimes agitated and I think (very rightfully) frustrated by her condition. She is however, elated to be home with her brother and sister, who have both been so brave and also very worried about their little sister. We are awaiting the results of the trial, and trying to keep Eleanor well for whatever comes next. We take each day as it comes, grateful that Eleanor is with us, and hopeful for more memories. Earlier this month she celebrated her 5th birthday and was very happy to be surrounded by friends and family. She is one miraculous 5 year old if you ask me!

I continue to be so incredibly humbled by the kindness and support we are shown day after day, month after month, over and over from family and friends, and our beautiful Bon Air community. Truly I can’t fathom getting through this past year plus without you guys. Please continue to hold Eleanor so close to your hearts. We need all the love, healing thoughts, light, prayers, whatever you’ve got for our sweet girl. And we are beyond grateful for every single one.