One in a million

I apologize that I have not been on here in a few days to update our readers on B's situation, but until yesterday, it just seemed as if we had nothing really new to report.

We were released from the hospital last Friday and Brooke had a terrific weekend. Back to herself only five days after having major surgery. A little worrying for us, as we are finding it difficult to keep her from being her usual rambunctious self. The trampoline, for example, is now 'broken' and the pool is 'closed' until next week. We are trying to get her to take it easy for a while until she has healed up a bit. Not an easy task.

On Saturday, Brooke looked a little differently to me, and at first, I couldn't figure out why. Besides the large incision on her belly and the smaller ones on her neck and chest, nothing should have been different. Still...something about her face was off. Her colour, her chubby cheeks, the dark hallows around her eyes....then I realized she had lost weight. Not surprising as she had not only lost a kidney, but hadn't really eaten anything in three days. Turns out she lost a kilo (or the equivalent of 2.5 lbs) of weight. Pretty significant when you only weigh 34 lbs to begin with, I guess! But after a weekend at home, some well-deserved rest and the return of her normal appetite, she looked and seemed to feel as great as ever.

Monday we were told to return to CHEO to meet with the doctors's to discuss the pathology of the tumour and have some follow-up testing. We went and had a GFR test done (can't remember the letters behind the acronym, but basically they inject some sort of radioactive fluid inside of her, then withdraw blood at different hourly increments to see how well her body is reacting to the loss of the other kidney and to ensure that the remaining one is picking up the slack, so to speak) and everything seemed to go smoothly, but that's when we found out we would also be having another ultrasound done today.

We were a little confused as no one had informed us of that (turns out CHEO had called us that morning to inform us, but we had already left for the hospital). Still, we went to the ultrasound and in spite of the fact that B was very upset that this "picture-taking" process was taking place again, allowed the sonographer to examine the remaining kidney. Once again, she fell asleep on the table and got a good 15-minute nap out of the experience.

Once again, he brought in a radiologist to look at something on screen and I became afraid. I was already nervous about the whole process as it was here where we discovered the original tumour 12 days ago and it was the same sonographer we had seen last time. Deja vu doesn't sit lightly with me.

At the end of the ultrasound, Hubby just asked point-blank: "Last time we were here, it didn't go over well. Did you find what you were looking for?"

The radiologist, who knew we had to get back to the Medical Day Unit (to see the oncology nurses to remove more blood for the time-sensitve GFR test), kind of said, "Well, I know you guys have to get going, so I'll just have to look at the photos a bit more closely. I see something and we should know within the hour."

My heart sank. What the f@#k?! I thought we had got everything in surgery! The doctors had said that the tumour was contained in the one kidney!

We went back to the Medical Day Unit, drew B's blood again, and then demanded to see someone about what the whole ultrasound was about. The nurses even seemed to suggest that we weren't supposed to meet with a doctor that day. We told them that we had been informed that we would be meeting with someone regarding B's treatment and now we just had an ultrasound and haven't been informed as to why. What are they looking for?

Our case worker came over and introduced herself to us and explained that, apparently, the study group in DC we had agreed to participate in, had examined B's ultrasound and CT scan photos and "seen" something in the left kidney, as well. The CHEO team had not seen anything there. The surgeon, who had seen the kidney up close and personal, had said that kidney was clean. The radiologist who reviewed the CT scan had said that the "thing" was fatty tissue, but until both teams were on the same page as to what the thing was, no treatment plan could be put into action as bilaterial tumours change the game plan. We would have to wait until the doctors had reviewed the new ultrasound to figure out how to proceed, so we wouldn't be meeting with anyone today. We were to go back home and someone would call us to meet with a doctor either on Wednesday or Friday.

Well, the game plan has changed. Our case worker called yesterday to say that CHEO now sees what the DC study group had seen. If it is a lesion, it's in its infancy, but there is definitely something there on her other kidney. (And if we hadn't agreed to participate in the study, then it may have gone undetected until it was a full-grown tumour.)

We asked the case worker, Lynn, how rare is it that Wilms' affects both kidneys. Very. Only 5% of the cases are bilaterial. In fact, in all of her time being a case worker for the renal cancers, she has only seen four cases. I can't seem to recall everything she said about the other cases, but I believe she said two of them had chemo and shrank the tumours. I know she did say that one of them, a little girl, had already had one kidney removed and had to have the tumour resected (sp?) from the remaining one. She is living, quite normally, with a partial remaining kidney. She's school age now and doing quite well. An encouraging case, but scary fuckery nonetheless.

I apologize if my language gets more and more reckless from here on out, but there aren't really words to express how pissed off I am with the world right now.

Anyhows, the game plan has changed in that now, B's situation has gone from a Stage 1 to a Stage 5. Stage 1 treatment was observation only, so we knew that wouldn't likely remain the case as she is too young to just remove the kidney and simply follow up afterwards. That moved her up to Stage 2, which requires baseline treatment (in other words, the minimal amount of chemo just as a preventive measure). But now that she is possibly bilateral, that moves her to Stage 5.

Unlike other cancers, however, Stage 5 is not necessarily worse than Stage 3 or 4. Stages 3 and 4 refer to the cancer having spread to other internal organs or having affected the lymph nodes, requiring more intensive cancer and radiation. Stage 5 only refers to it affecting both kidneys.

The plan now is to treat Brooke as a Stage 2 (baseline chemo once a week as an outpatient) for the first six weeks and then reassess the situation at that time. In other words, they want to see if the chemo will shrink whatever it is that's there. Then, B will undergo an MRI or another CT scan to see if it worked. If not, the chemo may be upped for another period of time or another surgery will be required to biopsy the thing out of her. My question is how much kidney does a person need to live? She's already down to one!

The chemo starts next Monday. Then we get to wait six fucking weeks to see if this thing is still there, present on her left kidney. And, here, everyone was telling me that the hard part was over, that the surgery went well and cancer was all but gone. But, really, the hard part hasn't even begun, because the most difficult part of this whole fucking situation is not knowing.

Our daughter is now bilaterial, the rarest of the rare. We already knew she was one in a million, but we really didn't need to have it proven to us.