Wednesday, June 30, 2010

Never questions

You know what is one of the scariest things about this whole cancer ordeal? Having to explain it to a two-year-old.

We wondered what we were going to tell her to when she asked us why her belly hurt after the surgery, when it didn't hurt before she went to the "hospible." But, bless her heart, B has never asked us. She just goes with the flow. Does what is asked of her, no questions. She has grown wise to the pricks and pokes she receives each time someone in scrubs approaches her, but still she rarely complains. Her trust in us--in her parents--to ensure that she never comes to harm is complete and absolute and it breaks my heart.

I asked her the other day if she knew why she was in the hospital, about why her belly hurt. Her response to me: "Because I hurt myself."

I nearly burst into tears at that moment. SHE never did anything to herself. This is NOT her fault and she is not to blame. I only wish I knew who I could blame! I'm really angry right now and I wish there was someone to take this out on.

Pas and I will have to explain to her why we are going to the hospital on Monday before her first chemo treatment, but I don't relish that conversation.

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.

Thursday, June 24, 2010

Coming home

Looks like the end of this week is finally near. B's morphine drip was removed today and she has been powering through all afternoon and evening on Tylenol alone. ('Powering through' is hardly the right expression. The kid bounced back like a rubber ball. She's restless, impatient and in desperate need of a change of scenery and a walk outdoors.) The doctors deemed her ready to go home and were willing to discharge us tonight.

Hubby, however, wasn't willing to risk waking up the grumpy bear for a fifth time today. Seems like each time B falls asleep, some nurse or IV tech hovers over her, trying to disconnect her many wires or take her vitals. All very important stuff, of course, but irritating to a 2.5 year old, who hasn't napped properly in a week.

So, Avie and I will go and pick them up bright and early tomorrow morning. I'm certain Hubby and B will be glad to see CHEO in the rearview mirror, if only for a few days.

We will return on Monday to see the Oncology Clinic to discuss chemo treatments. Even though the full pathology report has not yet been released, the doctors did confirm this morning that it is in fact, a Wilms' tumour. Yeah! (Shaking cancer pompoms and cueing the victory music.) Good news is good news, after all. And frankly, we've been waiting all week for some good news, so I'll take what I can get.

Just another thank you to all of our family, friends, neighbours and co-workers for all they have done for us--be it good wishes, prayers, food, gifties, homemade cards, meditation circles, mass intentions, grass-cutting, chicken-tending, babysitting or heartfelt offers of help. We truly are very blessed to be surrounded by such wonderful people who care so deeply for our family. Brooke is a very special little girl and it brings me great joy to know that others can see the strength and spirit in her that we see each and every day.

You love her, you really love her.

And, we love all of you!

Tuesday, June 22, 2010

Stage 1

It's Day 1 after the surgery and B is resting comfortably in the hospital bed beside me. Avie is settling down in the corner with Hubby while he thumbs through my Kindle. Finally, a moment to update our family and friends.

B's smile returned today as soon as Avie and I arrived. She was pleased to see her sister and requested that Avie sit with her on the hospital bed, while B perused the new DVD selections I brought her. We were happy to see the first of what will be many sisterly moments between them. Both girls, holding hands, while Snow White sang her way through the forest. I snapped a pic of 'em with Hubby's Bberry.

The epidural stopped working this morning, so the Pain Management Team opted for a continuous morphine drip instead, as well as Tylenol every four hours. Seems to be doing the job. Although not her usual chatty self, she has downed two jello bowls (orange and blue, her fave colours, of course) and has turned on her side by herself to sleep more comfortably. Good signs.

One of the oncologists came by a few hours ago to examine our little girl. Her news? Although the pathology on the tumour has not yet come back, they can tell us that the tumour is Stage 1. What a relief! That means we've caught it before it has spread anywhere else or affected the lymph nodes. It also means the least intensive chemo treatments of the five stages--probably. We are still waiting to find out if it's Wilms' tumour, but the doctors seem confident that it is. (I can't believe I am actually rooting for one type of cancer over another, but there you go.) They expect that we should know by Friday. At that point, someone will come to see us and discuss chemo further.

All we know for now is that Candlelighters will pay for our parking pass throughout her treatments (which is wonderful) and that she will likely lose her hair. I had secretly hoped, even though I knew it was completely unrealistic, that the surgery would be the end of the cancer and she would not have to undergo any treatments. I really had envisioned a nice summer at home with both my girls this year. We were going to go to the beach and to the zoo....it was going to be a very busy and memorable summer. It will be--but not the way I had imagined it.

B should be mobile by tomorrow and the nurses and doctors expect that we should be home by the end of the week. Hubby doesn't seem so certain, but who knows? B is strong and brave and resilient. I wouldn't be surprised if she bounces back by tomorrow.

In the meantime, we are all recovering at CHEO. B is the one in the hospital bed, but all of us have felt like we have been through the wringer this week. Lucky for her--she has the morphine.

PS: Avie just rolled over on the empty hospital bed beside us. Way to go, Avie-cakes!

Monday, June 21, 2010

Post-op

The surgery went very well and was ahead of schedule. B woke up and told us her belly was cold (she has an epidural in place at the moment) and is resting as comfortably as possible.
Even offering to show all the nurses and surgeons her new, blue operation socks. The kidney has been removed and a catheter port has been run beneath her skin so that she will not require a new IV each time she returns to CHEO. She will likely be on the epidural until Wednesday and recovering in hospital for the full week.Chemo treatments to come but we must wait for the biopsy report to find out how intensive and for how long. In the meantime, we wonder how we will answer her questions about why she is in pain now--but didn't hurt beforehand. For now, however, we are just relieved that the surgery was successful.

Many thanks for all the warm wishes and heartfelt prayers. We are overwhelmed by everyone's love and support.

Surgery

7:30 am: OR nurses come to collect us to take us to the PACU--not yet certain what that stands for. B is excited to go for an elevator ride and asks to push the buttons.
7:46 am: Dr Cho, our surgeon, comes over to talk with us. Two anathesologists join her to answer our questions.
7:52 am: Nurses inquire which one of us wants to go in. :ubby is braver than I--or at the very least is better at masking it in front of B-- and scrubs up. They are the last father and child team to go through the swinging doors. I am left alone in the PACU with the nurses. They fold up the screen walls, stack the chairs and smile encouragingly at me.
8:17 am: B just went into surgery for a nephrectomy (sp?). The CT scan on Friday revealed that the tumour is contained within the right kidney (and thank God has not spread anywhere else), so she has gone under the knife to remove the whole kidney, since the tumour is already infected 50 to 70 percent of the kidney.Felt very strange to sign over the rights to remove one of my daughter's bodyparts. Doesn't even belong to me and here I am signing off on it. Anyways, the surgery is scheduled for six hours, so we are looking at a long day ahead of us.
We were fortunate enough to get a pass to go home for the weekend, so B had a great couple of days swimming with cousins, eating watermelon with her grandparents, spending Father's Day at home and sleeping in her own bed. We came back to CHEO last night to prepare for today. B is growing wise to the nurses and IV techs, but has otherwise remained her superstar self. Amazing how powerful princess stickers can be. Hubby wonderas what the hospital's sticker budget must be. Not surprising of him!
Now we must wait to hear how the surgery is going and it is just 8:58 am....

Ps: please excuse my unedited messages. Am typing this on Hubby's blackberry and I have yet to develop any sort of texting skills.

Friday, June 18, 2010

Hera

The following piece is by a guest blogger. I leave these words in his capable hands:

Hera, or more commonly known under its masculine form, Hero, can be defined as follows:

One who, seen by the eyes of another, is seen to possess courage, bravery and strength in the face of adversity.

For some of us, we may strive all of our lives to be seen as a Hera or Hero in the eyes of a young one. For others, we may search all our lives to find our very own Hera or Hero to look up to. The true Heras and Heroes, however, are those who accomplish this without even trying. For me, it took 32 years to find one such person.

If someone had asked me two weeks ago who my Hero was, it would have required a pause and a hum, perhaps to come up with some answer. Today, there is no doubt in my mind.

This individual possesses Courage. Without a doubt, she’s displayed courage day in and day out. Courage, to me, is one’s ability to face adversity head on. This Hera never misses a beat. It doesn’t matter what she is faced with, she’ll muscle through it and won’t make a big deal of it.

This individual possesses Bravery. Again, it doesn’t matter what she faces, she marches on, or over (whatever the case may be) and moves on to something else. Bravery, as defined by yours truly, is one’s ability to face fears and overcome them for the better good of those around.

This individual possesses Strength. Strength, as far as I’m concerned, is the ability to muscle through or march over adversity when those around you break down and can’t carry on. This person demonstrated she could do that time and time again.

Now, some of you might say you know tones of people that possess these qualities. For me, I only know one person that possesses these qualities and has demonstrated them consistently and without selfishness. What makes this person a true Hera is the fact that she’s accomplished all of that, with no effort, by the age of two and a half.

For those that are current on this blog, you already know that our daughter has been diagnosed with a form of kidney cancer. Given the circumstances, I had the privilege to stay by her side throughout her stay at the hospital. I say privilege because I got to see her do things that I would never imagine myself doing, let alone a two year old.

It didn’t matter what test she was about to take, she went in there with a smile; and came out with one, too. Eventually, she caught on to some of the procedures and knew what she was in for. With a few words of reason and buckets of Courage and Bravery, she marched on and got through it. More importantly however, is her Strength. She marched on, even when mom and dad broke down. Telling them everything was going to be ok and that they shouldn’t cry.

‘Have a Kleenex and, as daddy would say, suck-it-up Princess.’

And she didn’t do it just once. Her heroism, and her smile, managed to put us back together more than once.

I am one proud father, and one day, when you read this, know that you couldn’t have given me a better Father’s Day gift.

You’re my Hera, you’re the reason I stop crying and I love you.

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