Catherine ended her treatment on March 17, 2009. "Treatment" is a word that never meant much to me until I entered the world of pediatric cancer. I am not sure if adult cancer patients use the term "treatment" or not. With my mother's cancer, we never called it "treatment." She had lung cancer, was in her early 60's, and had a body weakened by years of smoking and untreated diabetes. We all sort of knew that she was not likely to survive her cancer. We spoke about what "they" (meaning the doctors) would do for her, but that was it.
In the world of pediatric cancer, parents talk non-stop with each other about "treatment." Does it include surgery, chemo, radiation, bone marrow transplant, stem cell transplant, neupogen injections, etc.? How long will the "treatment" be? Are you "on treatment" or "off treatment?" When did you end "treatment?"
Camp Sunshine offers "Off Treatment Workshops" for families to adjust to their new lives. I recall when Catherine ended her treatment, I all of a sudden had lots of extra time on my hands. The last few months of her chemo were rough on her little body, requiring several whole blood transfusions and platelet transfusions. Each of those takes an entire day in the hospital. Plus, we were constantly watching her blood counts. So, she had to go to the clinic to have her blood counts taken. Each of those visits took half a day. Every Monday we had her chemo infusion. Usually on Tuesday or Wednesday she spiked a fever and we ended up in the ER to get intravenous antibiotics to protect her central line.
So, when we came off of "treatment," I remember looking at my calendar and realizing I did not have a single doctor's appointment for a month! Compared to the 3 to 4 days a week, this was a huge change for us. The chemo clinic had become home to us. Spending so much time there, we became very close to some of the staff and nurses.
With brain tumor patients, the percentage who relapse is so high that the doctors leave the chemo port in for six months. It had to be flushed monthly, but leaving it in would prevent the need for an extra surgery if she did relapse. Thankfully, Catherine's tumor did not return, so we had her port removed six months after she ended "treatment."
Now we return to the hospital every three months for an MRI, followed by "Brain Tumor Clinic" a few weeks later. At "Brain Tumor Clinic" we meet with several doctors, who all review Catherine's case and make a group decision about her medical situation. In time, we should go to Clinic every six months, and then eventually annually.
In the three years since we stopped "treatment," Catherine has not relapsed. Her tumor was discovered on November 8, 2007. She had surgery to put a port in and chemo began on December 4, 2007. I don't want to celebrate or recall those dates!
During "treatment" Catherine had brain MRI's every three months. When Catherine's tumor was discovered, it was 1.3 cm, but her vision was fine (as much as we could tell with a 27 month old child trying to read an eye chart). We were told that as long as the chemo stopped the growth of the tumor, it would be considered a success. The oncologist said that sometimes chemo kills tumors, but the tumor just remains dormant in the body. Catherine's tumor was in the center of her brain and was not a solid tumor, so it was inoperable.
Catherine's first brain MRI during treatment showed no changes. So, the 1.3 cm tumor was still present. Her second brain MRI, six months after treatment began, revealed fantastic news: the tumor was gone! I remember asking the doctor if we could stop chemo because the tumor was gone. She said we couldn't because there was likely some more chemo cells in her brain, but just so few that it did not show up on an MRI. So, we had to finish the protocol of 18 months of chemo.
Every MRI since that one has shown no regrowth of her tumor, both while we were still on treatment and since we have been off treatment. Praise God! So, I think it is fair to say she is in "remission." That is a reason to celebrate!
In picking a day to celebrate her remission, we chose the last day of her chemo, which was March 17, 2009. I honestly did not realize it was St. Patrick's Day until two years later. The first year, we went to Catherine's favorite Japanese restaurant, where she can enjoy a fire-laden show while the rest of us eat our meal. Last year we had a party at our house with the small group of friends who prayed with us during her treatment. This year, we decided to go downtown to a restaurant we had never tried: the Sun Dial. It is on top of the Westin Peachtree Hotel and rotates.
The girls still like to dress like twins quite frequently.
So, we are so blessed to be able to celebrate three years of remission!