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Tuesday, March 8, 2011

There are no handbooks on how to deal with just deal with it.

Hubby and I attended a pub night fundraiser on Friday night for a little guy in our town who is battling brain cancer. We do not know the boy or his family directly, but yet we feel connected as 4 years ago this past January, we were that family.

On Tuesday January 9th 2007 our oldest Princess was diagnosed with a rare type of childhood kidney cancer. Two days before her 5th birthday. The condition is called Wilm's Tumor, and she had a softball size tumor growing on her left kidney.

For me, when I heard the words "your daughter has cancer" the world stopped, I couldn't breathe for a moment and when the air finally hit my lungs again, I burst into uncontrollable crying fueled by confusion and utter disbelief. This is NOT supposed to happen. This is NOT happening. But, of course it was. SHIT. Shit. shit.

We were given orders to head down to BC Children's Hospital that evening. We first had to go home to make arrangements to help deal with the unknown circumstances that would follow. We had a second tiny Princess that would need to be cared for. How long would we be gone? Would she need surgery? Would she need chemotherapy? Was she dying? I couldn't stop the questions racing through my brain. Then outrage and anger reared their ugly heads. Fuck you cancer! You stole my father, you will NOT take my baby.

Upon our arrival at the hospital, we were given a room on the oncology ward and warned that we may be there awhile. "What's awhile?" I asked the doctor on call that we fist met with. "Weeks...maybe months." he responded with a sympathetic look on his face. The tests would commence the next day to directly determine what the cancer was, what stage it was in and what course of treatment we would begin. Amidst all this I just kept coming back to her birthday. In three days it would be her 5th birthday. For her birthday this year she's getting cancer. One hell of a gift.

The next day Princess A went through a gazillion tests. CT scans, X-rays, blood tests, ultrasounds...she did 'em all. Once all the testing was done it was time to wait. We had made her little room cozy by bringing her blankets and stuffies from home, but of course it was nothing like home. The next day our doctors came into the room and said the 5 sweetest sounding words I have ever heard in my life..."she's going to be ok".  I made him say it twice just to make sure I had heard him right. "It's not going to be easy, and it will take some time, but we can take care of this" he explained and we arranged a meeting for the next day to go over exactly what this cancer was all about, what stage she was at and what our game plan is....but at the end of it all...she was going to be ok. At that very same moment, it started to snow. Princess A loves the snow. I am not a religious person, but I've since then believed that that snow was directly meant for us and the happiness of that moment.

The next day was her 5th birthday. I had gone and found the closest store and purchased as much Disney Princess decorations I could find. Safeway just happened to have a fully prepared barbie cake all ready to go. Screw this, my baby would still have a terrific birthday. I got her daddy to take her to the playroom and I went crazy...banners, balloons, streamers, presents and a cake! I had bought her a new pretty outfit for the big event. She loved it, it didn't even phase her that she was celebrating her birthday on the cancer ward with an IV hanging out of her arm. Just then the nurses called us to the playroom. They had also made a large banner for her and greeted her by all singing Happy Birthday and presented her with some gifts. A special 5th birthday...mission accomplished.

We met that afternoon with our oncologists and a surgeon. They confirmed it was in fact a Wilm's Tumor stage 4. Not stages 1, 2 or 3...stage 4. On the following Monday she would have her left kidney and the softball sized tumor that was growing out of it removed. They would also be checking her right kidney and removing some lymph nodes to check for the presence of cancer. If there was cancer in the nodes she would need radiation as well as chemo, no cancer in the nodes = no radiation.

Her surgery lasted approx. 5 - 6 hours. They successfully removed her tumor, the kidney, 5 lymph nodes and gave her right kidney a good check. They implanted a VAD, vascular access device, under her skin on the right side of her chest. This was a small "button" that would be used to administer her chemo and collect blood instead of doing a hand IV every time. She recovered in the ICU for a day afterwords and then the recovery began. It was tough. She suffered more from that surgery than she ever did from the cancer. Her surgery was on the Monday and we went home on Friday. She wouldn't eat, and would barely drink. She lost a huge amount of weight, she was skin and bones. I yelled, I screamed I begged her to eat. I privately almost put my fist through the wall a few times. The doctors were days away from giving her a feeding tube, when she finally started to nibble and sip. Not a lot, but a start.

We got the histology reports back and the cancer had been in 4 of the 5 lymph nodes. Radiation started on the Monday. She had 7 rounds. Chemo began on the Monday as well and that would be over 7 months. She handled it all like a champ. She rarely got sick thanks to amazing new anti-nausea meds available now. Her hair fell out, and that sucked. She had gorgeous brown ringlet curly hair, and she was a compulsive hair twirler. It was the only thing that would soothe her. It was her version of a blanky or a favorite stuffy. So when her hair was almost completely gone, I took one of the large ringlets from her hair, tied it up with an elastic and pinned it to her pillow, so at least when she needed to fall asleep, she could still soothe herself.

We had good days, we had rotten days. We turned our house into a germ-free biosphere. She missed out on a lot of parties and a few months of preschool. We were in and out of the hospital a few times when she would spike a fever and she needed to be treated. But rarely would you hear her complain. She still laughed, sang and danced like a Princess should. This became our new normal. We would not allow ourselves or others to feel sorry for us and we were and still are extremely open about the whole experience. As I have mentioned previously, humor is a huge part of our family, and we'd use it to cope as well as make light of the whole situation. I'm sure often, to those who don't really know us, it can often come off as distasteful, but that's just us. Before we knew it, it was over. It was August and she was done her treatments and for right then had been given a clean bill of health. Her hair started to grow back and she started to get stronger day by day.

We were lucky in a way. On the days when we were at Children's receiving chemo, I met many families of kids who would be undergoing treatment for years, sometimes a lifetime. I remember the days when the nurses would try their best, but you could tell they were all dealing with another loss...the loss of a child to this devil of a disease. These nurses become part of your family, and they view each child as a part of theirs. Princess A's cancer has a 95% cure rate. As the nurse told me the night we arrived at Children's "if your child has to get cancer, this is the one you want".  That was 4 years ago. We still go for checkups with our oncologist every few months, and she will continue to be monitored annually for the rest of her life, but the belief is that she will hopefully never have to deal with this again. BUT, if she does, we will do what we did the first time, we'll handle it. You, as a parent have no right to wallow and weep in front of your sick child, in my opinion. Feeling sorry for ourselves is an adult trait. Kids don't know to do that. I'm not saying not to feel, not to pull your hair out and punch walls, not to sob uncontrollably for hours, cause I did all that. But it was done in private far way from my two Princesses. For them I was always mom and like a broken toy or a scraped knee, I would take care of it. We still had rules, manners were still expected, we still did time outs. Life remained as normal as possible.

So here we are now, 3 gorgeous, healthy girls. Apart from a 10 inch scar across her abdomen, you'd never even know that A is a mini cancer survivor. We lucked out, someone or something was on our side. But I am reminded everyday of how lucky we are to have her here with us, and that some families will not be so fortunate...and that doesn't make sense. So to any of you who have had this disease rob you of a child, or anyone for that matter, my heart and thoughts go out to you constantly and a hope for the strength to get through another day.