Today, on General Hospital....

My last three posts have revolved around sickness, and not necessarily Benjamin's. So I'll just say that the entire Fassina - Skira clan is doing much better, and leave it at that. This post is about soap operas, and the one in which we currently live.

There are 12 beds in 8D. Normally the ward is not full, but last week they overflowed on to the 6th floor, where there are extra isolation rooms. This only lasted one day before we were back down to 6 or 7, which is about normal. But imagine all the parents of all these kids sharing one bathroom, one computer (with limited Internet access) and a small kitchen with a communal fridge where every room is assigned either part of one shelf or space in the door. We are very lucky to have all this available to us since the other floors have nothing, but it can get crowded. And since cancer doesn't discriminate, there's all kinds of people in the ward at any given time. Let's face it, no matter what any one says, it's impossible to like everybody.

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I don't like friction and confrontation, so I keep my head down when I see people I'd rather avoid. But that doesn't stop the gossip from flying. And, boy, are there some stories. I'm not going to dish the dirt on my fellow "inmates", so if that's what you're waiting for, you can stop reading right now. But I am now convinced that the original idea for "General Hospital" came about when a writer was stuck in a hospital in close quarters, just as the parents are here in 8D. In no way am I saying that one patient's dad is canoodling with another patient's mom, but that even if you don't want to eavesdrop, you can't help overhearing conversations. And you can only compare treatments and protocols for so long. Eventually, all the personal stuff comes out. After all, we're going to be living with some of these people on and off for the next 4 months. Even the nurses are the first to tell us that often we know more about what's going on than they do.

Yesterday, Benjamin was detached from his IV, and is now a "free" man. His room is his oyster, and he roams everywhere he can. We've had to put the garbage can up on a counter, because that seems to be a favorite destination. He's also fixated on the red call button, having already rung a false alarm to the front desk once. Speaking of false alarms, we were up at 5:30 AM yesterday because a smoke detector malfunctioned in the ward, and we had firemen in full gear tramping up and down the hall. How's that to start your day. Later, Benjamin got some time with the sensory machine (see the picture), a full on interactive light show with music, bubbles, mirrors and fibre-optic cables to play with. He loved it, and hopefully we'll get to play with it again soon. But first, we might get another reprieve.

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Benjamin's counts are on the rise, and the doctors are planning on giving us a few days before moving on to the next phase of treatment. I never thought I'd be saying this, but I can't wait for Benjamin's next marrow aspirate. Then we'll get a true picture of what the prognosis is, and how treatment will proceed. But until then, I'll keep my head low and my ears open for the next installment of my private soap opera.

Stop the World, I Want to Get Off

Ever have one of those days? Well I feel like we've been having one of those months. The gastro which took over our families continues it's path of mayhem, having now taken down my younger sister-in-law as well as my brother. And my father has been in the ER for over 80 hours, waiting to be admitted. He'll probably leave first, since it seems that whatever knocked him out (they still don't know what) is on the wane, and will hopefully resolve itself before they find a bed.

The difference between the adult hospitals and the Children's is like night and day. On Tuesday, I brought Emily back to the ER for dehydration (again). Within 2 hours she had been seen, assessed, treated and sent home. My father was lucky if he passed through triage in that time. I know adult hospitals are busier (rightly so), but it just seems so extreme. For the record, he is being well taken care of; he's currently in a "holding" unit of the ER for patients waiting to be admitted, rather than the real ER, and is being seen and evaluated by the doctors regularly. Now to get selfish: how does this affect me? Other than the obvious stress of having 2 immediate family members in hospital, I've lost one of my daughter's main care givers, my mom. Luckily, this past week Roger was on vacation, but starting Monday things will get interesting. At least Emily's swimming is over and her fall activities and preschool only start in two weeks. I'm sure things will have sorted themselves out by then, but for the moment she will probably spend a lot of time with my in-laws.

Also, for those of you not in Montreal, the downtown portion of the Metro green line (including the Atwater station) has been closed indefinitely due to cracks found in some underground tunnels leading to the McGill Metro station near the Bay. Again, what does this mean to us? If Roger drives to work he will be facing increased traffic. If he doesn't drive, it will be harder to reach the hospital by public transportation. Likewise for my in-laws, who were only a 20 minute Metro ride away from the hospital. Now they face an arduous walk up Atwater from Lionel-Groulx or long bus rides. I hope that it won't affect their frequent visits, and the respite they offer me.

Benjamin is a very peppy little boy. In the past week he's had both blood and platelet transfusions, as his numbers are still dropping, but his energy levels are unaffected. The doctors are all thrilled by his general state of health, and how outwardly unaffected he seems by his treatments. The staff are all just waiting for him to spike a fever, since that is normal and expected at this stage, but he refuses to "cooperate", and remains perfectly healthy, considering. But at times, I think it would be easier to take care of a mellower, sleepier child. Benjamin managed to detach his IV while crawling one day last week. What tipped me off was the thin trail of blood he was leaving behind him as it dripped out of the open port! He also banged a toy against his mouth, cutting his gums above the front teeth and leaving him with a bloody smile for the next couple of hours. For a child who is supposed to be in the "delicate" period before his counts start coming back up, Benjamin is not very delicate. I mean, he even tried to push himself up to standing by pushing down on the rocking chair (actually, that was pretty funny to watch). He turns himself around so often that his IV line starts to look like a telephone cord, and I get dizzy uncurling it.

The title of this post implies a "why me? Can I run away?" attitude, and while I do get my moments, I think it's natural, and they pass. Benjamin is doing great, and my father is feeling better every day, and that's what's important. I know that everything will work out as it is meant to be. In the meantime, I'll just sit tight and grab all the small reprieves I can get.

When It Rains, It Pours

Do you ever get the feeling that you're on Candid Camera? That things are just getting so out of hand that the only way for it to make sense is if there's a bunch of people snickering at you from behind a wall? I'm getting a little bit of that right now.

See, this gastro bug is decimating my family. First I had it, then my mom and Emily. In fact, we even had a dehydrated Emily in ER on Saturday for 4 hrs. of IV hydration. Now my brother's got it, and we think Benjamin is starting too, although with him it's hard to say if it's gastro or chemo. The one thing I know for sure is that his poop is being tested for C Difficile (a boy down the hall has already tested positive - aack!). On top of this, my father's going to the Jewish General for daily rounds of IV antibiotics for an infection in his elbow, and is seeing the Infectious Diseases specialist tomorrow to find out what's going on. My father-in-law is banged up from a fall down his front steps, and was stung twice in his on-going war against the wasps living above his mail box. Oh, and my younger sister-in-law had an abscess on her neck drained.

If you care at all for your health please, please stay away from us right now! We seem to be collectively covered by this cloud of germs and bad luck. I'm sure that within a week we'll all be back to normal and laughing (heck, I already am - hysterically). But right now the gods of vacation are doing their darnedest to make sure Roger's time off this week is wasted. This was the week we were supposed to be in Nova Scotia visiting our friends. Benjamin's diagnosis scuttled that, but our friends decided to come here instead so that Emily and their kids could still have some kind of vacation together. So guess who's kids developed fevers this afternoon after playing with Emily, while Emily's gastro looks like it's making a comeback. I'm telling you, STAY AWAY!! We're poison!!

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Other than that, everything is fine. Benjamin continues to amaze the doctors and nurses with his strength and powers of recovery. You really would never know by looking at him how serious his condition is. His hair is starting to shed again, and he still is not drinking anything except his morning bottle. But he still feasts on his baby food jars, alleviating fears that they would need to insert the feeding tube which most other kids on the floor have. On the floor Benjamin is unstoppable (as long as we keep his IV machine moving with him). He's taken to sleeping on his stomach with his face pressed into the bed and his bum high in the air. He's also becoming a TV addict, but I'm trying to limit him to PBS Kids and HGTV. Hopefully in a couple of weeks he'll be allowed out of the room and into the rest of the ward. Until then, we have the perfect room in which to stand at the door and look down the hallway at all the comings and goings.

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So really, other than this curse of bad health, we're doing great. On that note I will sign off, before the computer shorts out and I get a bad shock and then bang my head falling out of my chair. Shh, I think I hear snickering.

Plans B, C & D

Just when you think that you've developed a routine for the new normal which works for everybody, some higher power (in the guise of a gastro bug) decides to test your back-up plans - and the back-up plans to the back-up plans.

After a very enjoyable company picnic on Sunday I returned to my post in 8D, my mother having offered to watch Benjamin to allow the rest of us a day in the country. But Monday morning found me waiting to be picked up by my mom and Emily with my mother-in-law taking over Benjamin, as I had been well and truly hit by a very nasty gastric virus, and was banished from the hospital. And while I spent almost 48 hours on my back recovering, Roger spent his nights at the hospital - not ideal, but that's a back-up plan for you.

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I returned to 8D on Wednesday, weak but OK, only to find that my mom and Emily had both been stricken too. So Thursday, Roger watched Emily while we scrambled to put plan C into place. Finally it was decided that my brother, mother-in-law and sister-in-law would take 12 hr shifts at the hospital over the next 36 hrs, while I took a taxi home to be with the sicker of our 2 kids. Because there's the irony. Benjamin has had 44 hours of chemo over a 5 day period and except for a decreased appetite, is still trying to climb out of his crib. Emily is lethargic, cranky and bordering on dehydration. Right now, she really is in worse shape than Benjamin. In fact, if she doesn't start taking in fluids soon, we'll be in the ER with her for IV hydration! Won't that be fun - the entire family in the hospital together!

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But back to Benjamin. His second course of chemo ends Saturday morning. He's flown through this course, only throwing up 3 times so far. He did have an acute reaction to the chemo in his liver function, but that resolved itself almost as soon as it was detected. He's not drinking anything, but he's still eating his jars of baby food to some extent. They are making up the liquid intake with IV hydration, and as long as he keeps eating something they will hold off on putting in the feeding tube. We hope he will start to regain his appetite by next week, as by then most of the chemo will have worked its way through his system.

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All in all, we continue to be very upbeat about Benjamin's treatment and prognosis. Which is more than we can say about one poor family in the ward. Yesterday was a surreal day in 8D. In my last post I spoke about the two extremes in emotions and how they can overlap. Well, we had the physical manifestation of that here. On the one hand, one child was celebrating his birthday two days after a (so-far) successful bone marrow transplant, with friends and family in the hall outside the window to his "fish-bowl". On the other hand, another little boy's extended family continued their visits in an effort to spend as much time as possible with the terminal child. It's absolutely heartbreaking to see. But all the nurses constantly remind us that every story is different, and that we cannot allow ourselves to dwell on the successes or hardships of the other families. The capitalist's business mantra applies here in 8D as well: "look out for number one, and I'm number one!"

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So we focus on Benjamin, and on Emily, and thank God every day that we have such a strong support system around us that allows for plans B, C and, if necessary, D. And here's a big thank you to everybody who has offered their support in any way, either physically or emotionally, from near or far. I'm not an overly religious person, but it floors me that candles are being lit and prayers are being said literally around the world for our little guy by people who haven't even had a chance to meet him (yet). And here's a warning to those of you closer to home who have offered to assist us either with Benjamin or with Emily or any other way: just because we haven't taken you up on it yet doesn't mean we won't.

Bittersweet Symphony

There's moments in life that just hit you. Today I was walking to the car, which was parked in the Alexis Nihon parking garage. Emily was running ahead of me through the deserted mall, weaving back and forth with her arms spread out, pretending to be a plane. In itself this is a pretty unremarkable moment in life with a young child. But it is the context surrounding this scene which will make it stick in my mind. For one thing, we're coming from the hospital. And the song being piped in from overhead is "Bittersweet Symphony" by The Verve. You know the one: "It's a bittersweet symphony, this life. Trying to make ends meet, you're a slave to the money, then you die". Yeesh! Somebody give these guys some Prozac! But it's the juxtaposition of this almost suicidal melancholy over Emily's pure and uninhibited delight which struck me.

And life for us these days is full of moments like that. Our 3 nights and 2 days home were wonderful, even with the sword of readmittance over our heads. We made the best of it, having friends and family over, and taking Benjamin outside as much as possible (after all, next time he gets outside it will probably be fall). He took full advantage of his freedom, getting into everything he could. But his crib at home was no longer familiar to him, and he seemed genuinely pleased to be back in the familiar confines of his room in 8D yesterday afternoon.


Benjamin's second course of chemo started yesterday, and will last a total of 8 days, after which we will have to wait for his body to recover again. He is still eating his solids, although he has stopped drinking his milk. This seems to be common, according to some of the other moms in the ward. And the more Roger and I talk to the other parents, the more similarities we see in our situations, even if final diagnoses or treatments differ.

You will recall from my first post the difficulties the doctors had in diagnosing Benjamin until it was patently obvious. Several other families on the ward had the same problems. It seems that leukemia is a tricky little bugger to diagnose. Recurring or lingering infections were common, as were general fatigue, discomfort and headaches. And for several families, as with us, it took weeks after the initial symptoms (months in one case) for the leukemia to actually show itself. Let me get technical for a moment. On June 6th there were no blasts (damaged stem cells, the hallmarks of leukemia) in Benjamin's bone marrow, and on July 11th his marrow was 86% blasts! His most recent biopsy this past Tuesday showed 2% blasts, so the chemo is definitely working.


This brings me to a question which several people have asked me: why could the doctors not find the leukemia earlier, like when Benjamin was first hospitalized? We asked them also, and their reply was that they would have been able to diagnose it in June, but that would have required cutting into an otherwise healthy boy's head to biopsy the lump there. They had no reason to do that and we would not have allowed it. After all, Benjamin had made a complete recovery from the first episode, and there was no indication of what was to come. Hindsight is 20/20 and all that, so we refuse to second-guess the doctors.


So here we are living the lives given to us, hovering somewhere between pure and uninhibited delight and suicidal melancholy. We make the most of the little moments, like Emily walking hand-in-hand in the corridor with the 4-year old sibling of another 8D patient, or Benjamin learning to push himself to standing using the rail of his hospital crib. And I'll keep on blogging updates along with my ramblings and musings. After all, that's what it says in the next line of the song: "I'll take you down the only road I've ever been down."

Go West, Young Man

When I asked the doctor today, after Benjamin's spinal tap and bone marrow biopsy, when the next course of chemo would start he gave me two options: today, or go home and come back in on Friday. So guess where we are.

Benjamin is sleeping in his crib for the first time in a month, and for the next two days we're going to try to be as normal a family as possible. Benjamin is doing his part - less than an hour after arriving home he had already broken in our new granite by trying to rub bread into it where ever he could reach, and was trying to climb the stairs on his little chicken legs.

For those who want the technical details, his nutriphils are just above 600, which means well enough to get some freedom (>500) but not yet at ideal chemo minimum (>1000). His bone marrow looks very good, in that there are way less than 5% blast cells in the sample. This means that Benjamin is classified as low risk for recurrence. Of course, the real test is going to be after the 2nd course of chemo, but these results are very reassuring none-the-less. In fact the doctor told us how impressed he was at how fast Benjamin has recovered from the first course of chemo. They were conservatively looking at Labor Day to start the next course, but that's our little Boy Wonder for you.

So we're going to take a break from hospital life and all its little joys (vital signs at 10 PM and 6AM), and also from the blog. We'll let you all know how Benjamin handles chemo when he's not sedated, and where in 8D we've been resettled. We'll attach pictures of Benjamin outside the hospital walls as well.

Better the Devil You Know ...

Have you ever noticed that for every saying spouted there's one that says the exact opposite. You know - "absence makes the heart grow fonder" vs. "out of sight, out of mind". I wonder if it is a Law of Idiom Physics - "for every action (or idiom) there is an equal and opposite reaction (or idiom)".

Here's the two that I've been thinking about a lot these days: "the grass is always greener on the other side of the fence" vs. "better the devil you know than the devil you don't". See, outside the hospital, and in life in general I think we all fall into the "grass is always greener" camp. I'm not saying that we're all materialistic s**ts. What I mean is that a bit of envy for what other people have is natural. The fact that I want my straight hair to be wavy and Tonia wants her curls straight doesn't mean we're going to exchange wigs made of each other's hair.

So here's my ultimate "grass is greener": one of our kids is sick and yours are healthy. And that's OK. Because the the Law of Idiom Physics applies here, inside the hospital. I was talking with one of the moms this morning in the 8D family kitchen. Her daughter is one month older than Benjamin and has a tumorous cancer. There have been all kinds of life-threatening complications for this poor kid with no end in sight, and to top it off the mother is 5 months pregnant. So we're swapping stories about treatments and protocols and side-effects and what-not, and I'm thinking to myself "thank God we're not in their shoes". And right then doesn't this woman say to me "At least we don't have to go through what you must be going through"!

I was completely floored. But I also realized that here, in the hospital, we see so much of other people's health problems but only in a very superficial way, while we go to great lengths to learn everything possible about the disease which affects us. How do I know that the little boy with one eye and what looks like a hearing aid implant isn't going to have a life-altering surgery tomorrow and will be home in 2 weeks. People must walk past Benjamin's "fish tank" and think "that poor kid - not even walking yet and already a bone marrow transplant", not realizing that he's had no such thing and that we're just in this room temporarily because it's currently available and it's big. This over-zealous educating of our tiny corner of medicine to the exclusion of everything else brings about the "better the devil you know" attitude here. I think if you asked any parent here about their child's illness there would be a qualifier tacked on to their response: "But at least it's not..."

So all this to say we know our devil, and accept it, knowing that it is being fought and beaten. And speaking of devils, Benjamin is doing great. He is doing his best to wreak as much havoc in his small corner of the universe before his next course of chemo starts on Tuesday. He is now only connected to the IV for as long as it takes to give him a dose a day of the one antibiotic which can not be given orally. He spends as much time as possible on the floor, and has very quickly picked up crawling again. He is now trying to pull himself up on anything he can reach. He loves watching me play Sponge Bob on the PS2, and wants to hold the controller himself. We went down to the ENT clinic this afternoon to scope Benjamin's throat again in anticipation of next week's treatments (everything looks great). He didn't even fight the mask we put on him, I think he was so happy to be just getting out of the room. We were hoping that the doctors would give Benjamin a 48 hr pass before the next course starts, but it doesn't look like his nutriphils will allow for that. But that's the thing about Benjamin - you never know with him.

And as for the Law of Idiom Physics and whether "the grass is greener" or "better the devil you know", let's remember what a great idiom physicist once said: "It's all relative"! (Get it? The Theory of Relativity? Oh, leave me alone, I'm tired.)