Cycle 6 + Bell Rung + NED

NED
No Evidence of Disease
Eli is cancer-free

I wanted to lead with that. Sometimes I can be long-winded and I like to set the stage before delivering the facts, but announcing that Eli is cancer free is the most important detail in this story.

Backing up to the final cycle. We started Final Cycle Six on 5/12 and 5/13 with in-patient doxo and started on the daily neopogen shots, which worked as expected to prevent a crazy dip in neutrophils. He had a couple weeks off, finished up his junior year of high school and went to some baseball games. 

We went back in the day after Memorial Day on Tuesday 5/27 and he slept most of the treatment and took a while for levels to drop so they upped his fluids. 

For his final treatment, he was admitted by one of our favorite nurses, Anna. She was his very first nurse on that very first day and we were so lucky that it was her to round out the final admission. Even when she isn't scheduled on the oncology unit, she comes and finds Eli and wakes him up with hugs. She loves to beat him at Uno and ask him all the questions. We are going to miss Anna and all of our nurse friends.

His doctor ordered more fluids since his levels were higher than usual the time before and that did the trick to get them all the way down to a 3 after 24 hours. We were planning on bell ringing on Saturday and now I was panicking that he was clearing too quickly, when in the past, that's all we wanted! After 48 hours, he was at .2. He was feeling pretty good - just bored and feisty and tired of sharing a room with me. By Friday afternoon he was at .12 so we planned on 12pm the next day to RING THE BELL. Finally.

 

First thing in the morning, he was at .08. The onc doc on call rounded way earlier than expected so we waited for all of our peeps to show up to help celebrate.

I wasn't sure what kind of emotions would be present, so I was just preparing to go with whatever. I didn't know if I would cry, cheer, breathe a sigh of relief of all of the above. 

Eli walked a lap without his crutches while the nurses sang, wearing silly hats and glasses and we all rang handheld bells as Eli made his way to the big golden bell that has been hanging on the wall, a constant reminder of the end goal of treatment. 

The most emotional part for me was saying goodbye to the nurses and support staff that have been a constant presence these last 8 months. We saw so many of the same faces for more than half of a year and you can't help but form a special bond to people who are helping your child and tending to so many needs. It was bittersweet to walk away filled with gratitude, walking out the doors of a place that was so familiar for so long, a place Eli dreaded checking into for obvious reasons, but I was strangely going to miss. We've longed for this day. There were time when it felt like we'd never be done, that the end was so far away and all of a sudden it was here and didn't feel real. We walked away leaving it all behind. Closing the treatment chapter. Moving on with our lives and returning to a normal that doesn't include a pending hospital stay.

On 6/10, we had a follow up appointment with Dr. M to do another set of x-rays. Not much has changed since February, which was to be expected since chemo slows everything down. The implant is still seated correctly without any signs of loosening or infection and his range of motion is still good without any pain so we will plan to repeat x-rays in 3 months. Eli is cleared to use one crutch for support and stability. His leg and muscle feels really strong and he has gotten pretty confidence and stubborn.

The next week, we were up bright and early Monday morning for the first of Eli's re-scans - the PET Scan. Sunday he couldn't eat any carbs or sugar in order to get the most accurate results and not long after we were back home, I got the notification that the results were in. I had a little scanxiety and I was really nervous to review the findings. I was hoping for boring and uneventful results and as I scanned them quickly, my heart starting beating faster and my breath quickened as I was surprised that a couple of his lymph nodes had an increased uptake of the FDG tracer. I was pretty confident that it was inflammation and/or reactivity from nearby trauma from surgery, mucositis, infection, etc. I sat on the news for a couple of days. Our appointment to review the scans was well over a week away and his doctor had said that she would call me if there was something we needed to discuss sooner. I called the clinic on Wednesday and Dr. V said she wasn't worried AT ALL about the lymph nodes and that her opinion is exactly what I was thinking and that everything looked good. Whew.

Friday we did the CT and MRI. I was confident, but on edge. Confidently on the edge. The CT was fast - about 15 minutes or so and the results came in while we were in the MRI waiting room. I opened them right away and right at the top read "No signs of intrathoracic metastasis". I breathed a huge sigh of relief and gave a fist bump to Eli. The report also noted that his heart and pericardium are normal. While I was pretty sure that the CT would turn out this way because he went into this with a clear CT scan, it was a relief to know that nothing had spread.

We got moved to a second MRI location within the hospital once we were told that the original machine they had scheduled was too strong to produce the best images of Eli's knee/femur. MRI scans function by using a strong magnetic field which reacts with the hydrogen molecules in the body (since our bodies are largely made of H20). But when you have large metal "artifact" like Eli does, the MRI machines with the stronger magnets (3.0) actual produce worse images compared to the lower level magnet (1.5), so we moved to the other side of the hospital to wait for the machine that would produce less distortion. The room was chilly and I was plugging away working while Eli was getting bored, restless and we were both getting hungry. We had arrived at the hospital at 7:45 and by around 10:45 the machine was free and he went back.

We headed to In N Out for lunch and as we were waiting in the drive-thru line, I got the notification that a new test result was ready. I hesitated and then opened it. I was overjoyed to read "There is no evidence to suggest residual or recurrent disease"! My eyes welled with tears and I looked at Eli and told him he didn't have cancer any more and I hugged him tight. This was the final scan and with all of the results we know could feel confident that he had officially gotten rid of all of the osteosarcoma.

We got up to the window to pay and the guy at the register told me that the car in front of us paid for our food. I burst in to tears. After composing myself I told him that we had just received final confirmation that Eli had just beat cancer after a long 8 months. He gave us his blessings and congratulations. 

So we cheers'd our cheeseburgers.

Next week we check his heart with an ECHO and EKG and a final hearing test. Then we meet with his onc doc on Friday. We have surgery to remove his port on July 1.

He'll continue to go to clinic over the next few months to do monthly blood work as they monitor his labs to make sure that everything gets back to normal ranges. He'll have a scan schedule, the first being 3 months from now and then planned out over the next year. It is my understanding that CT scans will be most important to continue to monitor lungs. I am looking forward to the FIVE year mark. Right now, we are overjoyed that he is NED. We heart NED.