Pre-diagnosis

February 5 2004, 4:25am, following what my O.B. described as the "perfect pregnancy", Ian and I were blessed with the arrival of our first child, Grace Compagnon Stanley. 8lbs, 4 1/2 ozs, ten fingers and ten toes, a full head of silky black hair and eyes so dark you could hardly distinguish her pupils from her iris, a beautiful healthy baby girl! A Sigh of relief... as a new mom, all of the anxiety regarding my unborn child's health was released. Taking Materna, eating well, swimming 3 times a week and getting lots of rest had paid off, I felt as though I had "dodged a bullet" and now had a life time of happy memories to create with my daughter.

After five years of childless marriage and as the first grandchild on both sides, preparation for Grace's arrival had been seamless and every detail was in order. We immediately put our new digital camera to good use taking 100's of pictures capturing every moment from her first diaper change to her first birthday. After 12 months of breast milk and baby food made from scratch, it did not take a lot of prompting to convince Grace to attack a full size pink and white birthday cake as she sat in just her diaper on the floor of "As It Happens" photo studio. Within minutes it was off to the shower to clean her up as she licked her fingers and giggled in delight.

Mother's Day Sunday 2004 began uneventful with a late start and a big breakfast. The sun was shining and Ian insisted that Grace's swing set from last year was too small for her 34" frame yet the jungle gym that we had absorbed from another family in the area may be too challenging, since she was only 15 months old. He wanted to take advantage of the good weather and build Grace a custom swing set if I did not mind watching the baby on what traditionally should be my "day off". Spending Mother's Day with my Hubby and baby girl in the sunshine sounded superb to me so we got dressed and headed to the backyard. The afternoon was filled with several hours of play, and test runs on the custom swing set that was just about complete. The joyous afternoon was interrupted when grace suddenly stopped what she was doing, stared blankly at nothing; I noticed her right eye was blinking quicker than her left. I immediately called to Ian that I thought that something was wrong with the baby and we rushed her inside. After consulting with the Grandparents we decided that it may have been heat stoke or possibly pain from teething that caused this odd reaction in Grace but thought we should contact her pediatrician first thing Monday morning just to be safe.

Diagnosis

Monday morning came without event and since I was booked solid at work I choose to bring Grace to Nana's for the morning since Dr. Mackinnon would not be in until 1pm that day. Nana promised to call if anything unusual occurred. Within a couple of hours of leaving Grace, I was racing back because anouther "unusual pause" had occurred. Fighting back the tears, I picked up Grace and rushed her to Dr. Mackinnon's office. At that moment I knew we were dealing with something serious, possibly epilepsy, my heart was breaking as it raced in panic... what was happening to my beautiful baby girl??

Dr. Mackinnon gave Grace a completely normal exam. He had been confident in her development since birth and I felt reassured that again we had possibly "dodged a bullet". Grace was a healthy, vibrant 15 month old who was a head taller than every other baby in her playgroup. We agreed an MRI would be prudent when it could be booked, but for now it was life as normal.

Within hours of returning home, Grace's conditioned worsened. The "unusual pauses" were now accompanied by, a look on her face as though she had just eaten something very sour, and drooling so excessive it would soak the front of her shirt in under a minute. I immediately contacted Dr. Mackinnon who advised us to head to Credit Valley Hospital.

Hours felt like days as Grace's condition worsened without explanation. The "unusual pauses" where now being referred to as seizures yet no antiseizure medication could seem to control them. Devastated, exhausted, confused... within 24 hours our world had been turned upside down. Was our baby dying? We were now praying that it was "just" epilepsy.

May 11, EEG: ABNORMAL, still we prayed for epilepsy.

May 12, MRI: TUMOUR DETECTED...... our world falls apart.

Dr. Mackinnon reassures us that the tumour is presenting itself as benign and in a location very accessible for surgery. He refers us to Dr. Rutka at The Hospital for Sick Children and sends us home for a day to recuperate.

Relief, reassurance and elation followed our meeting with the doctors at Sick Kids. They assured us that they were 99% confident that Grace's tumour was benign and in a "good" location. Grace would simply be treated with an anti-seizure medication and in the future they may or may not decide to remove the tumour. Grace was going to be O.K!!

The summer following Grace's diagnoses was very busy with multiple trips to, and overnight stays at, Sick Kids hospital trying to get her seizures under control. Grace was now being treated in very much the same way as an epileptic would be, with antiseizure medications multiple times a day, trips to epilepsy clinic, EEG's, EMU's, evoked potential testing, weekly blood work as well as speech, physical and occupational therapy. Although hectic, Ian and I found it manageable and we were still able to create special memories with Grace including her first trips to Bronte Provincial Park's one acre pool, African Lion Safari, the zoo and the beach on Papa's boat just to name a few.

In August we noticed Grace's walking began deteriorating. At first we were not sure if it was just the unsteadiness of her 18 month old legs unable to keep up with her will to walk quicker and kick her ball harder then she had ever done before. We contacted her Neurosurgeon to discuss this change in events. He was not surprised. Grace's tumour was very close to, if not on, the motor skills of her right leg. Antiseizure medications were no longer preserving her quality of life. The decision was made to prepare for surgical removal of Grace's benign tumour.

Surgery

Oct. 12, 2005 Grace was scheduled for a routine MRI and MEG to prepare her for a possible December resection of her tumour. Although Grace's walking had continued to deteriorate, her condition was not considered life threatening so we had to wait for an available space at Sick kids O.R. As Ian and I casually waited for Grace to wake from the anesthetic for the MRI, we recognized how desensitized we had become to processes that once would have result in sleepless nights. As we prepared to leave the recovery room, the nurse stopped us and requested that we wait to see Dr. Rutka. An unscheduled visit from Grace's extremely busy Neurosurgeon could only mean one thing... change in prognosis. I looked at Ian, and fighting back the tears I said "it's malignant."

Dr. Rutka confirmed our greatest fears. The world-class team of doctors caring for Grace had been mistaken. Her tumour had not followed any of the "rules" that had lead to correct diagnoses in the hundreds if not thousands of cases which preceded hers. Grace's tumour had ballooned from the size of a small olive to that of a orange in just 18 weeks. They knew it was malignant but where not sure what type of tumour it was or even if it would respond to chemotherapy. Dr. Rutka would contact his colleges in hopes of pushing off anouther patient's surgery in order to secure O.R. time for Grace within the next 48 hours. Grace's condition was now life threatening.

Ian and I now prayed that although Grace's tumour was malignant that it would at least be a class of tumour that traditionally responded to chemotherapy. Within 36 hours Dr. Rutka and his team preformed a successful emergency resection of Grace's tumour. Having removed 99.5% of the tumour, they confirmed they believed it was a class of tumour that did traditionally respond to chemotherapy. After 6 exhausting hours in the O.R. waiting room, this was exactly the news that we had hoped to hear. We were elated!! With just 0.5% of the tumour remaining and being treated at one of best Children's Hospital in the North America, how could her complete recovery not be guaranteed? Well, it is not. On Oct. 24 we met with Grace's Neuro-oncology team to hear Grace's complete prognosis. We were presented with staggeringly low 30% survival rate for Grace's type of brain cancer.

Grace's tumour was a type of PNET, an Ependymoblastoma to be specific. An extremely aggressive tumour that is so rare that they have never treated one at Sick Kids, even through searching the Internet we were only able to find one other child with this condition at St. Jude's Children's Hospital in Memphis Tenn.. In that case the child was successfully treated with radiation, however our baby is too young for radiation and we must solely rely on chemotherapy. Hence Grace's 30% chance for survival.

Chemotherapy

Grace started on the Head Start II protocol of chemotherapy on Oct. 29, 2005, the most aggressive chemotherapy protocol available for a child her age. Ian and I find this reassuring as we want to hit this cancer hard, leaving it no chance to steal our daughter from us before we create all of the memories we so fondly have dreamt of. Although, some have already been adjusted so early in our time with Grace, like becoming grandparents, Grace will be left sterile from this aggressive chemotherapy protocol. However, many still are alive with hope, like bringing Grace to her first day of school and Ian walking her down the aisle on her wedding day. The down side to Grace receiving the most aggressive chemotherapy protocol available for a child her age is that if she does not respond, we have very few other options since administering radiation to Grace would be considered unethical due to the permanent damage it would have on her young brain.

We cherish every moment, hour and day we have with our beautiful baby girl and dream of a full recovery so that the world can be blessed with all that Grace has to offer.

Please see my updates on Grace and thank-you for your support and visiting her web site.

Sincerely,
Lesley Compagnon