Twas the Night Before Christmas

This is a picture of Emily trying to touch an ornament on the biggest Christmas tree I've ever seen inside.
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I just want to send out a quick note of thanks for all the support and love and good wishes that have been sent our way from everybody. One would think that this would be a difficult time of year to be at the hospital, but it has been surprisingly joyful and uplifting (and not because of the avalanche of gifts Benjamin has received). We had a wonderful day together as a family today, and are looking forward to tomorrow's activities.
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There is a sense of rightness in spending the holidays with the very same people we've been living with for the past 6 months, nurses and patient's families alike. This morning a father of a patient who is now being followed through the out-patient clinic came by to wish us happy holidays even though he should have been at work. That's just the kind of place this is - it doesn't take much for the families here to become a bigger family under the cancer umbrella. And what better way is there than to spend Christmas with family.
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So to hugs and kisses to all our cyberspace family, who have been faithfully following Benjamin's progress through this blog, and the Merriest, Jolliest, Happiest Christmas possible to all of you, full of love and joy and good times. And here's a video to make you smile:

Chemo: A Thing of The Past

Well, it's official. A week ago today, on December 16th, Benjamin received his final dose of chemotherapy. Now we're in the waiting game. His counts are still dropping, and today he will receive transfusions of both blood and platelets (he already got platelets on Wednesday). But other than that this final course has been a breeze. Except for chemo and the transfusions, Benjamin has been free from his lines. He's still eating and drinking like a champ, so nutrition and hydration are not issues. And this week he started walking on his own - from the middle of the room no less. After taking tentative steps all week, on Friday he just decided that he would push himself up from the floor and take off. Luckily, I can take video with our digital camera, so I was able to capture the moment.

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We will be spending Christmas at the hospital (obviously), but that's not a bad thing. First of all, if we were at home our tree wouldn't stand a chance against Destructo-Baby. "No" to Benjamin is a joke, and he thinks everything in his reach is fair game. Secondly, we're being spoiled - not just Benjamin, but all of us. Since Benjamin was admitted on December 7th, there has been a steady stream of gift givers, carolers and local celebs for the kids, as well as punch, egg-nog, massages and other treats for the parents.

On December 10th the Montreal Canadiens invaded the hospital, causing near-pandemonium and mass-hysteria in patients, parents and staff alike. Benjamin and Emily had their pictures taken with Chris Higgins (#21), Mathieu Dandenault (#25), Andrei Kostitsyn (#46) and Jaroslav Halak (#41). They also got autographs and goodie bags, and Emily got her picture with Youppi, the team mascot outside the hospital. We made sure Emily was there that day, because we knew they were coming, and she made a picture for the players. But when the time came to give it to them, poor Emily froze. Who can blame her, all of 3-feet -nothing standing in front of an 800 lb. wall of muscle! But she was very excited, and has now decided that she is a very good hockey player.

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Two days later we were visited by Kent Nagano and part the Montreal Symphony Orchestra. They wanted to play for Benjamin, but he was sleeping. The local soccer and football teams also visited, as well as many other people bearing gifts, either on behalf of corporations or just because. Leucan, the local childhood cancer support group, delivered a massive stocking crammed to the brim with goodies. The Child Life department hosted a Bingo game over the intercom system as an excuse to give out more gifts, and Santa will be visiting each floor Christmas morning with even more.

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So don't worry too much about us. As long as Benjamin continues to be well, we'll enjoy this Christmas together as a family buried under a mountain of toys. I've already made plans to do a sweep of the toys we currently have, and fill up bags to be donated so that there's room to bring all these new ones home.

Fourth Course Blahs

If ever there was a month I was happy to see the last of it was November 2007. It just seemed that everything was infected by the November blahs, or the Fourth Course Blahs as it were, especially Benjamin. We ended a record stay of almost 6 weeks when Benjamin was finally discharged on November 25th. Since then we've been back twice to start the last course of chemo, only to be sent home because his neutrophils still aren't high enough. "Third time's the charm" I hope since we're giving it another shot tomorrow. While on the one hand, it is easy to complain about the length in between treatments, it was expected, and we're glad to have had Benjamin home for almost 2 weeks.

We were all affected by the Fourth Course Blahs as well. Emily started getting whiny and cranky again, asking when Ben would be coming home, and Roger and I came as close to the edge of marital disaster as we ever want to. It's just that with the time change and the extra long hospital stay and the fatigue and frustration that goes with it, even small little things will set you off. All of a sudden the entire world is against you, and no-one cares what you think and what you do. In hindsight it is classic wallowing self-pity, but at the time it just feels like such gut-wrenching despair that you think that there's no amount of crying that can make the feeling go away. I actually told the social workers at the hospital that the one thing missing was a soundproof padded room for the parents (and older patients) to go and vent their frustrations without disturbing the other families. And that's actually one of the reasons that I didn't blog much - I didn't want you all to think I was suicidal or anything, since my posts would have been so sickeningly depressing. But it's all OK now; these two weeks at home have allowed us to regain our equilibrium as well. Move along folks, there's nothing to see here.

We really should have anticipated all this, since we watched the mother of another AML patient slowly break down while waiting extra long for her child's counts to come up after the fourth course. And then, after 7 weeks in the hospital, it took another full three weeks at home before the fifth course could start. But if we use this family as our guides, the fifth course and subsequent recovery went very quickly and smoothly (4 easy weeks). So here's hoping.

Other than those pesky neutrophils, you'd never know that Benjamin is sick. It's as if he knows his days at home are numbered, and he's going to make sure he packs as much mayhem into them as possible. Let's just say that if it's not nailed down, it's toast. This morning he was too quiet for too long. When I went to check it out he had emptied the contents of his lower drawers and spread them all over the floor. And look out if the stairs have been left ungated - our little climber/slider is not about to let any opportunity go to waste. Sharing is a new concept for Benjamin, and he throws fits regularly when he is refused the toy with which Emily is already playing, regardless of what it is. It goes both ways, with Emily indiscriminately confiscating stuff from Benjamin because it is "too dangerous", only to play with it herself. Unfortunately for Emily, Benjamin has turned into a little speedster. Whether it is crawling or cruising, he gets where he wants to go - fast. His new thing reminds me of monkeys leaping from tree to tree. From one cruising surface, Benjamin will take a leap of faith and a quick step or two, essentially flinging himself to the next surface. So far he has only missed once, smacking his head on the coffee table when his hands just missed the mark. If he's not in motion then he's begging for table scraps. I guess it just makes sense that a bundle of endless energy requires a bottomless pit for a stomach. I just wish he had more teeth. The seventh one finally broke through yesterday, and we hope the others aren't far behind, but it's hard to say how much the chemo has delayed his development.

The best thing is that he's finally starting to communicate verbally. "Beba" is belly button, "Laah Laah" is any Teletubby, "Bob-Bob" is SpongeBob, and "Aaaaaaah" means that he wants us to sing the SpongeBob theme. And "Kha-kha" means he needs a diaper change. Since the infection, Benjamin has become very aware of his bowel movements. That's not to say that he doesn't mind sitting in the results. He will usually stop whatever he is doing, announce the arrival of a present and then continue on his merry way until he is stopped. Benjamin will also pick up the phone and have whole gibberish conversations with it held to his ear - unless there is actually someone on the other end. Of course, there are the standard "Mama", "Dada", "EmaEm" for Emily and "Baba" with a wave for bye-bye.

Hopefully, we can start the last course tomorrow and it doesn't knock Benjamin completely for a loop. It is now a given that we will spend the holidays in the hospital, Unless his counts stay where they are for so long that we actually go back only after Christmas. But I'm starting to look forward to Christmas in the hospital. Last weekend Emily saw Santa (or St. Niklaus) 3 times. Even though Benjamin was home, he couldn't go out into the general population. At least at the hospital we'll get that memory and a picture for him. So yay for the holidays, and thank goodness November is over.

Playing Catch-Up

Once again, I must apologize for a long delay between posts. Unfortunately, Benjamin's fever lingered and took some time to resolve itself. And once we figured out what was going on with him, I got knocked on my tush by a bad cold which had me banished from the hospital for the better part of a week, as the rest of the family scrambled to take over here.

We're all better now, but still here and waiting for Ben's counts to come up again. Tomorrow will be a month since we were admitted, and it doesn't look like we're going home any time soon. What happened with Benjamin seemed to start with a case of constipation just before Halloween. This was probably the cause of his anal fissures which got infected. The poor bugger was in so much pain that he couldn't sit down or poo or pee or have his diaper changed without screaming bloody murder. He was eventually put on morphine so that he could at least sleep relatively comfortably. As soon as Ben's neutraphils started coming in, they were being sent to his bum to fight the infection and two abcesses formed on his anus. These burst last week and Benjamin is much happier. He is still afraid to sit down from standing because I'm sure he remembers the pain, but for all intents and purposes, he is back to normal. He even eagerly lifts his legs for all the various doctors who come to shine flashlights and poke at his butt-hole (ugh!).

As I mentioned, it is taking some time for Benjamin`s counts to come up. In a way we aren't surprised. Another child on the exact same protocol as Ben (who left yesterday for the last time - Yay!) took longer to recover from the 4th course of chemo than all the others, 8 weeks compared to the usual 4 weeks. She is considerably older than Benjamin, so we were hoping that Ben's age would help him bounce back faster. But his butt infection probably didn't help, and with every passing day it looks more and more like we will be spending Christmas here on 8D. And that's OK, because in the grand scheme of things, where we spend X-mas is insignificant as long as we get more X-mases together.

Another family is in the process of finding out that this holiday season will probably be the last for their child, barring a miracle. They are to get more answers today, but they are not optimistic, especially since this battle has dragged on for over a year with surgeries and chemo and a short-lived remission. Compared to this, we are so lucky that "all" Benjamin has is AML, with a detailed and proven protocol and relatively high cure rates.

So that's all the news from 8D. I promise to write again soon, now that we're all caught up.

Halloween and All That's Scary

Halloween has come and gone, and they really go all out for the kids here at the hospital. Benjamin was given a costume (Sally Carerra, the Porsche from the movie "Cars"), which he just sits in. On the office floors, they were giving out candy to the kids. In the cafeteria there was a magician and a dance party. Here there was also face painting, pumpkin decorating and intercom bingo. Unfortunately Benjamin missed all the fun because he decided to celebrate Halloween by developing a fever and being miserable all day. But my mom won at bingo a couple of times, and Benjamin had toys delivered to him anyways. Luckily I took pictures of him in his costume the day we got it, instead of waiting until yesterday.

This fever is following the same pattern as what happened after the third course of chemo: as Benjamin's numbers bottom out, the fever hits and he has a couple of bad days and a few transfusions before things start to get better again. That's what's happening now. Today he had transfusions of both blood and platelets - more beads for his necklace.

I am currently embroiled in the Kitchen War. You might have read in earlier posts how I feel about how people are treating the communal parents' kitchen. Well, Monday night I went to make my pre-bedtime cup of hot chocolate using the brand-spanking new electric kettle. By habit (and thankfully) I always dump the water and refill before boiling. This time the water poured out brown and smelly. It seems that someone brewed their tea directly in the kettle. Three boiled kettle-fulls of water later I was finally able to enjoy my drink, but not before I taped another note on the use of an electric kettle. That same night, a whole pizza and two containers of food were left I suppose to rot. The next morning, with the food still there, I filed a complaint with the head nurse, who had a memo circulated to the effect that if the kitchen could not be kept clean, then for the health of the children in the ward it would have to be locked. I am to report tomorrow to the head nurse if there is no improvement. It is completely beyond me that in a ward where the slightest risk of infection is countered by extreme measures of sanitization by both staff and parents, people can leave food and dirty dishes lying around in a shared area without a second thought. We'll see what happens.

Right now, a sick and restless son makes for an exhausted and sleep-deprived mother. I'm going to try to catch some sleep while Benjamin is sleeping too.

Buzzzzzz....

We've been back in here for just over a week and the place is buzzing with news, rumors and gossip. Most of it is new since most of the families involved are new. Some of it is painful and some of it is just plain old juicy speculation (a favorite past-time around here).

First things first. When a child leaves here for the last time you really wish that you will never see them again, at least not in these corridors. Unfortunately, one returned to the floor this week after only three weeks of remission. I can't say that there is a lot of hope in this kind of situation, and the mother is understandably frustrated and angry at the world right now. This is one of my secret fears being acted out before my eyes. Even though I always say that I am 100% positive that Benjamin will walk out of this hospital cured, the ugly truth is that I will not believe that Benjamin is completely cured until he has passed his 5 years of remission, and even then the possibility of a recurrence will haunt me to my dying days.

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A new family is not dealing well. A couple of nights ago the kitchen door was closed, I suppose to help muffle husband and wife yelling at each other, thankfully not in English or french. I've since found out that they brought their child here from their home in Europe for treatment of a brain tumor which had gone undiagnosed by their local doctors (the father is originally from Montreal). I feel for the mother and child, both of whom have very limited English and no french, especially since it seems that their main translator (the father) and the mother are not getting along at the moment. Another parent on the floor told me that one evening the staff had to call security because in the heat of an argument, the father walked out carrying the child.

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In a similar vein, my closest friend on the floor has requested counselling for her and her husband. It seems that her mother-in-law, who flew in from overseas to help them with their other two children, has taken it upon herself to discredit her daughter-in-law to her son. I have met this man only twice as he visits the hospital so rarely, and offers virtually no support to his 8-month pregnant wife. I've seen him sit and watch while his wife struggles to her knees to change a diaper on the floor. So, three kids, the youngest sick and another one due shortly, and he can't be bothered to lift a finger. My friend has acknowledged to me that she has accepted this behavior from her husband as part of his cultural upbringing and lives with it. It is her mother-in-law's behavior and her husband's reaction to it which shocks her the most. I just find it highly ironic that the more macho the culture, the more power a mother has over her grown and married son.

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Roger and I have not (yet) had a major disagreement since Benjamin's diagnosis. This made me wonder who's relationship is the norm for this floor? Everybody tells us that we are dealing with our situation very well -calm, cool, collected, and as a family. Are we really that exceptional because we've accepted what we can not change and have tried to keep our family on as even a keel as possible. I'd think that everybody would at least try to do the same. It does help that our extended family is the supportive type rather than the back-stabbing, selfish type.

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Speaking of buzz, Benjamin was the subject of a different kind this week. We finally bit the bullet and shaved off what was left of his hair. This last round of chemo really did a number on it, to the point that I was finding hair in his diapers. Benjamin has been doing really well, even if his counts are still dropping. We figure the transfusions will start again tomorrow, but until then he will have been free from his IV pole for 5 days. See, no fever means no antibiotics means no IV fluids. That and the fact that he's eating like a horse make him the healthiest kid on the unit - an that's coming straight from the doctors. Hopefully we'll keep it that way. After all, Halloween is next week and we've already got Benjamin's costume lined up...

Rants, Raves and Ramblings

Well, we're back in 8D and back in the routine. Benjamin finished his 4th course of chemo last night. Although it was only 20 hours total over 6 days, the drugs were about 10 times as concentrated as the earlier courses. His numbers are already in free-fall; we'll see how long it lasts this time. Overall, Benjamin is in very good spirits but his hair is really coming out now (due to the stronger drugs, I guess). The blog posts have been few and far between recently due to a combination of writer's block and having no time. Last week Roger was away on business and then my parents took a well-deserved long weekend off, so things were more hectic than usual. But now I can catch up with what's been happening in our lives recently.

We returned to 8D to find the communal kitchen seriously upgraded with new paint, flatware, cookware, glassware, plates and small appliances. Wow! The regulars are taking bets on how long it will last. The problem here is that those of us who are in for long periods of time respect the space because we know we'll need it and use it. But the families who are just in for a night or two at a time every month or so don't have that same sense of "ownership" and leave the kitchen in a horrible state. Last night, I came in to wash Benjamin's bottles and found a used filter full of coffee grounds sitting in the sink along with dirty dishes. There was also an open carton of milk on the counter, and two half-full cups of coffee on the table. I threw out the grounds so I could do the bottles, but everything else stayed as it was for at least another 2 hours before it was finally cleaned up. I was so angry that I vented by making a little sign about respect and taping it up in the kitchen. It will probably get ripped down, but at least I felt better for doing it.

Yesterday Benjamin was given a beautiful handmade quilt yesterday. We've draped it over the glass dome of his crib so he can see it, but not poop or pee on it. How it came to him is a wonderful story of caring and compassion. The mother of a good friend of mine had had some prayers said for him in her prayer group before Thanksgiving. Another member of this prayer group (who is also a cancer survivor) is a quilter with a local guild which regularly donates quilts to the hospital. She asked the guild if the quilt she was currently working on could be gifted directly to Benjamin. So now Benjamin has this gorgeous quilt with a turtle pattern. Each turtle's head and tail are flaps of cloth that he can lift and hold, which he does quite happily. It might not seem like much, but this gift is so touching because someone who has never even met Benjamin was moved to do this, and because a whole group of strangers are saying prayers for our little guy. Talk about the kindness of strangers.

Hey, we're going to be on TV! Every December CFCF (the local CTV station) has a telethon, and last week a reporter, producer and camera man came to 8D to film some footage and interview some of the parents. We set up in the playroom with Benjamin on a mat in between the reporter and myself. I was miked and we were ready to roll then Emily barrelled in, practically shoved the reporter out of the way, and plopped down on the mat and to unload bagels and cream cheese from her knapsack. Then half way through the interview, Benjamin pulled himself up on me and started gnawing at the microphone. What else happened while the camera was rolling? Emily made the producer take her to the bathroom. The nurses came to start Benjamin's chemo. Emily had to leave and insisted on giving Benjamin the biggest hugs and kisses she's ever given him. Then when she left he started whining and trying to crawl after her. The producer thought this was all great, but I'm not convinced. I'm sure we'll just get a couple of nanoseconds of air time. But I'll let everybody know when those nanoseconds are.

I finally did Benjamin's beads of courage. There is a program here where a child is awarded a particular bead for each procedure or test or milestone. I never got around to starting it earlier, and had kind of lost track of some of the details, but we estimated 22 dressing changes, 17 transfusions, 14 various tests (X-rays, CT scans, ultrasounds, etc.), 5 LPs, 5 bone marrow aspirates, and on and on. Benjamin's beads are now on a 4 ft. string and I'll keep better track of it in the future. I've heard of some kids mounting their beads in a shadow box to display them after their treatment is finished. We'll see what Benjamin wants to do with them when he's older.

So that's what's new here: the good, the bad and the just plain crazy.