From then to now

....aaaand we're back.  I haven't posted in a bit, so I'm sorry to those who are praying for us wondering how we are. To be honest, though, I am so pleased to be able to have this self-imposed, unintentional sabbatical from the blog. Imogen is doing great; I have updates, and most of it is good news, so I will get back to regular updates.  We have a lot of test results and upcoming scans, so I do request your prayers.

And you're going to love the pictures that are coming soon.

Until then, though, I wanted to share something.  We recently were asked to tell our story, as part of a fundraiser Chick-fil-a is doing on our behalf.  (Yep, it's pretty awesome. Thanks, Linda!)

Many know our story up to this point, but I wanted you to see a snapshot of the road we've been on.  This is a lot of information, and we could have written so much more about the uncertainty and the emotions. We couldn't include the challenging, heartbreaking, and encouraging conversations we've had so many times with so many loved ones.

Tammy wrote this recap of Imogen's story, and we both wanted to share it with you. So here you go.

The beginning

Imogen spiked her first fever March 17, 2013. For the next five months, she had countless fevers, all reaching the 103º range. Often accompanying the fevers would be pain in her legs and severe limping. At times, she was unable to walk at all. Her weight began to drop, and her energy waned significantly.

We took her many times to the orthopaedist, which only resulted in more confusion and missed diagnoses. Immy endured four ER visits for the same issues, and we were told each time that this would pass.  It didn’t pass. During each ER visit, bloodwork was done, and the results always showed normal levels because the then undiscovered cancer doesn’t cause changes in blood counts.

A normal Thursday

On August 15, 2013, Imogen spiked yet another fever, and I rushed her back to the pediatrician. Her loss in leg function was alarming to our new pediatrician (we switched), and we were sent to Children’s Healthcare of Atlanta at Scottish Rite for immediate admission and a neurological consultation. The neurologist ordered an MRI to find out what was going on. What followed was a revelation we feared but never expected to encounter.

The MRI showed a tumor, wrapped around Imogen’s tiny spine and extending out toward her right kidney. It had infiltrated some of her back muscles, and was compressing her spinal cord. The location of the tumor meant it was wrapped around the nerves that control most of the functions for her lower body. Immediately, the neurosurgeon planned an emergency resection and exploratory surgery to see if the tumor was intra-spinal or extra-spinal. We didn’t know it at the time, but that discovery was the difference between life and death for our Tiny.

The next morning, Imogen went in for major back surgery; it was a 6 hour ordeal, in which her spine was separated and lifted away from her body like the hood of a car.  The surgeon cut away as much as he could for testing, and to relieve the pressure on her spine. Thankfully the tumor was pressing on her spine, not coming from within. Again, we didn’t know this meant she would live.

Diagnosis and treatment

The results came from pathology a few days later, and the diagnosis was ganglioneuroblastoma, Stage 3. A rare case of a rare cancer. More testing and probing ensued, and we were thankful to find that the cancer was not present in Imogen’s bone marrow, lymph nodes, or anywhere else in her body. The prevailing opinion from our oncologists was to start chemotherapy to see if we could shrink the tumor away from the nerves, with another surgery on the horizon if this treatment were successful.

So we began chemotherapy. We had planned for eight rounds of chemotherapy, occurring for three days at a time, three weeks apart. Imogen’s body and immune system was more heavily impacted by the chemotherapy regimen than anticipated. While it was supposed to be an outpatient treatment schedule, we had multi-day stays at the hospital seemingly every week. At the midway point after four cycles, we scanned again, and the doctors told us that the tumor was not shrinking, and the chemotherapy was doing more harm than good. So, we altered the plan and canceled the remaining chemotherapy treatments.

Today

Currently, we are in an observational period.  The docs are also running monthly urine tests to see her catecholamine levels, which tells us if there is increasing or decreasing malignancy in Immy’s body. As of the last test, her levels are still elevated far above normal, so we know there is still malignancy.  Surgery is not worth the risk, and chemo isn’t working, so we are waiting and praying that the tumor will continue to mature and die off on its own. We are monitoring Imogen’s progress and doing body scans every three months, with MRI and PET scans, so it is an ongoing process of testing, probing, and researching.