A Letter from Sheila
Doug and I have been asked to write what will inevitably be an extremely painful summary of the last four and a half years of our life and the impact cancer has had on it. Revisiting means, in part, reliving, what can only be described as catastrophic in its magnitude, shocking in its suddenness.
Christian woke up the morning of his second birthday, September 26, 2002, in a bed at Newton Wellesley Hospital. He had been suffering from all the classic symptoms of a flu bug for the past several days. Admission to the hospital for observation and a bag or two of IV fluids was expected to help him kick the bug but he just could not get over it. We had made a birthday cake, balloons were readied, presents wrapped and waiting for him; we were certain our little guy would be coming home with a prescription for antibiotics. Christian, however, did not turn the corner, as expected. That afternoon, a CT scan was ordered and shortly afterwards we were surrounded by a team of doctors, in Christian's hospital room, who broke the news to us. Christian had a "large mass" in the posterior fossa (cerebellum) of the brain. In 20 minutes, EMTs would be there to take Christian and Sheila by ambulance to Children's Hospital where a team of neurosurgeons were waiting for us to arrive. It is likely they will do emergency surgery to remove the mass.
We made frantic calls to family and friends. We kissed our sweet, unconscious darling as he lay on a gurney and went immediately into surgery. Once the operation was underway, I drove home to tell sister, Stephanie, and brother, Cameron, the outline of what was happening, to comfort them, and answer any questions they had. Then I went back to the hospital and waited with Doug.
After several hours, the neurosurgeon emerged and told us he had "gotten it all," and that it was an encapsulated tumor. We took this as very good news and heaved huge sobs of relief that, perhaps, Christian would be OK after all. At this point, no one had mentioned the word cancer.
It wasn't until two days later, when surgeons were doing rounds, that a team came in to Christian's room and told us he would need radiation to the tumor bed; that it was, indeed, cancer, and that radiation would follow. We were shocked beyond words. How could this be happening? What did it mean for our lives? Most importantly, what did it mean for Christian's? Four weeks after surgery, the radiation began; we were at Children's every morning at 8 AM for six weeks where he was anesthetized and the back of his brain was radiated with a focal radiation procedure. Finally, on December 3, 2002 the course was finished. Christian had only had mild side effects and all of us, doctors included, thought he was out of the woods.
Doug and I met parents of children with a similar tumor -- ependymoma -- something fewer than 200 children in the U.S., under 18 years of age, get a year. It is, therefore, extremely rare, and no one knows the cause. We studied, read reports, got on line, read about treatment options, joined a support group and did everything we could to gather others around us as we faced this tragedy. We still had to parent Cam and Steph who were 4 and 16, respectively, at the time.
Life went along fairly smoothly, although forever changed, until the early fall of 2003. Christian ran into our room one morning complaining of a headache and vomited. This continued for three days, usually upon awakening. I called the doctors, who claimed it was a virus and told me not to worry. From Sept. 23 until Nov. 5 of that year, I begged for an MRI. I knew it was back. We had not reached the precious, important one-year- without- recurrence goal and who knew what was ahead.
Christian had emergency surgery on Nov. 5 2003, and another resection, though
minor, in January 2004, with chemotherapy treatments in between surgeries. A
June 2004 scan showed recurrence and by July 14, 2004 Christian was in grave
condition at Children's. We were told he would not make it to the weekend, that
they would not operate, and that this was the beginning of the end. Doug and I,
in our devastation and through our belief in God, consulted with family members
and decided to push for surgery since it was clear, from the MRI, that the
tumor could be removed.
Much against medical opinion, Christian was operated on
and within two weeks was enjoying vacation time in Chatham, MA. Though weakened
and scared to walk too much, he was with us, getting his strength back as he
played with his cousins and rejoiced in the healing beach air.
The year 2003 had ended horrifically as I was diagnosed on Christmas Eve, at Dana Farber Cancer Institute, with metastasized Stage IV leiomyosarcoma -- another extremely rare (1/650,000 people) cancer. I needed surgery immediately on my scalp to remove the growth and chemotherapy to stop the tumors from continuing to grow in my lungs. Again, we asked in complete shock, "How could this be happening to a seemingly healthy woman?"
Doug and I would, literally, walk trance-like through the alley that connects Children's to DFCI as one or the other of us (Christian or I) received treatment in the spring of 2004. Stephanie, meanwhile, was graduating from high school and left almost on her own to file college applications and do what others normally have parents do for or with them senior year. It was a sad and frightening time for our family and I, to this day, don't think I can put in to words what it actually felt like.
After our unsupportive experience at Children's, and a closer examination of the track record of pediatric neurosurgery there, we decided to seek treatment elsewhere for Christian. We searched the country for second, third, forth, etc., opinions. Our now-deceased and beloved pediatrician, Dan Heller, suggested Mass General. After much consideration, we made the decision to leave Children's and take Christian to a place where they actually would help him survive should he be faced again with a life-threatening situation.
It was fortunate we did this because we needed MGH again in January of 2005 when Christian had another recurrence. Doctors carefully operated, were satisfied that they got the entire tumor, but this time planted over 100 radiation seeds in the tumor bed, something experimental and not done often in brain tumor surgery (yet). We were all for this out-of-the-box thinking and so grateful to the doctors who made this happen. The surgery was deemed a success, though Christian had to go back for a shunt in March and a port replacement later in the year. He was put on chemo in June, after some streaks were identified in the spinal area, until January 2006 when a new tumor nodule was discovered in the same area of the brain as the other recurrences.
Christian had radiosurgery on January 20, 2006, and again in May '06 to two spots 1.0 cm and 2.0 cm in size. Recovery was quick and, within a few days each time, he was back to his lively, colorful self. We are enjoying every moment with our beautiful, lively son. In 6 ½ years, Christian has had 10 surgeries - 5 to remove tumor, 2 to place/replace his port and three to insert, and in Jan. '07 revise, a shunt; 5 radiation treatments and has participated in 6 different experimental chemotherapy trials. Although Christian wears a brace to help him compensate for poor balance and unsteady gait when he walks, he shows no other cognitive deficits. He enjoys swimming, bike-riding, playing with his trains, his Hot Wheel cars or just hanging out with his Brother and his Dad.
Following the elation of a clear scan in August, a third nodule in the back of the brain (all 3 in the area of the cerebellum), was discovered on 1/8/07. The Jan '06 and the May '06 tumors remain almost unchanged. We worked with Christian's medical team to determine that the best course of action to treat all three spots was to begin a promising phase II clinical trial for a drug called Lapatinib. Christian began his seventh chemo treatment, a medicine he takes orally, at home, on February 14th, Cameron's 9th birthday. We pray that this treatment will effectively halt the growth of, or shrink, these tumors.
In April 2006, I visited Memorial Sloan-Kettering in NYC for a second opinion on my condition. A Jan. '06 scan showed the chemo treatment that I had been taking for 2 years had cleared my lungs of any sign of tumors. However, I was concerned about a suspicious lump on my right shin. The Dr. at MSK reported that Dana Farber had put me on a successful treatment plan and that the lump on my leg was nothing more than a bruise. Following a 7 week respite from chemotherapy, my May '06 scan showed the spots in my lungs had returned along with the lump on my scalp. I had surgery to remove the recurrence in my scalp and immediately returned to my chemo regime.
After 8 months of questioning my doctor about the lump on my shin, he finally agreed to an MRI of my leg. The scan revealed an 11 inch tumor located inside my right tibia which has spread to the soft tissue around the bone (the "bruise" from April). The consensus is that this tumor is the original site of my cancer. On January 26, I concluded 6 weeks of daily, aggressive radiation treatments to my leg at Mass General's renowned Proton Therapy radiation center, where Christian has also been treated. During this time, it was necessary to suspend my chemo treatments. Doug and I have decided that transferring my entire care to MGH will provide me with the best opportunities for long-term survival, just as it has for Christian. Additionally, I had the recurring lump on my scalp removed on December 19, for a third time. Four days after completing radiation, I restarted my chemo treatment only to have one of the drugs react with the radiation field in a way that caused a severe burn to my shin. And, most recently, I was called into MGH on Jan. 18, for an urgently scheduled MRI to get a better picture of what is suspected to be a tumor on my spine.
February '07 marks my third anniversary of regular chemo treatments. Through the blessing and good fortune of having wonderful and generous friends, I have not had to go to any treatment alone more than three times in 100 treatments. It is likely I will stay on some form of chemotherapy for the rest of my life as there is no cure for leiomyosarcoma (a cancer of the connective tissue), though I remain hopeful that something less rigorous than what I am now doing will be developed.
Were it not for our families, friends, friends of friends, strong faith and belief in the chance to get closer to God through adversity, we would not be able to function on a daily basis. We can never possibly thank all of those who cook for us, take care of Cameron, send Steph a note, give up work or leisure time to come and stay at our house, sit bedside with us at the hospitals, participate in fundraisers in our name, and pray for us within whatever religion they believe. We welcome all and are extraordinarily grateful for the support we have received and continue to receive. Your smiles and kind words, your very presence and willingness to walk this walk with us are gifts we will never forget.
The battles are far from over. We cannot look ahead much past the upcoming weekends of our lives. The challenges are great and remain. Somehow, someway, we will make it, though. Of that, we are sure. Thank you all so much for being there in whatever way you can.
All our love, Sheila (Doug, Stephanie, Cameron and Christian)