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.

At The End of a Vacation

Sorry it's been a while but I got a surprise Thanksgiving Sunday when Roger came home from the hospital early - with Benjamin! We were out on 24 hr passes until Wednesday, just going in for a couple of hours a day for Ben's IV meds. He had his CT scan on Wednesday, the results of which allowed for those meds to stop and we were discharged. Tomorrow we go back in for his 4th course of chemo, but we've enjoyed our vacation. The doctors have decided that Benjamin's Broviac port does not need to be changed immediately, and are putting it off until absolutely necessary (hopefully January when it should come out for good), so no surgery for the moment.

So rather than blathering on about the week that was, I'm trying something new: video! Here's hoping it works!

Giving Thanks and Pumpkin Pie

Here we are on the eve of Thanksgiving weekend and there is no end in sight for us right now. It has been decided that Benjamin definitely needs to have his Broviac replaced once his counts come up and before he is allowed home. The doctors are also discussing the need for a CT scan - normal procedure once neutriphils return as a follow-up to the anti-fungal meds he's been taking. That means that he'll be here for at least another week if not more, depending on how fast his counts rise - and they aren't moving very quickly right now. And then poor little Benjamin will be put under at least once if not twice for these procedures, and he will add to his collection of scars.

It already looks like he has freckles on his lower back at the base of his spine from all the spinal taps (or LPs in hospital lingo) he's had. And the scar on his neck from where the Broviac needles were inserted is very prominent. He also still has the marks on his groin where the double port was inserted when he was in ICU. The scars haven't had the chance to heal normally because of his almost constant state of neutripenia. I know that when his body gets back to normal the scars will heal and subside faster, but that is small consolation right now.

When Benjamin gets a real bath in the bath tub (once a week, just before his dressings are changed) I can wash his scalp along with the rest of him because so little hair remains, especially on top. I call him trailer trash now, because he's just got wisps of hair on the top, but a mullet behind. Benjamin loves those baths, flinging himself forward onto his stomach and doing a very credible frog-kick with his legs while splashing away and happily sucking on a soaking washcloth. Unfortunately, because the dressings on the Broviac have to stay as dry as possible, this is a weekly luxury for him. Just another reason to add to the long list of why we want this experience behind us.

But for all that we also have much to be thankful for. We are lucky to be in Montreal where we are being treated at a world-class facility by renouned and well-respected doctors. The nursing staff is dedicated, knowledgable and caring; they truly define TLC. So much is available to us (outside of the medical care) to take care of our mental and emotional well-being. Yesterday, Mickey and Minney Mouse from the Disney on Ice show in town this week came to visit the floor and left behind some Finding Nemo goodies for the kids (the look on Benjamin's face seeing their oversized heads was priceless). And the floor is already decorated for Halloween, with reverse trick-or-treating planned for the kids whe can't leave their rooms. "Dr. Clowns" (think Patch Adams) visit with the kids once a week. There are coping workshops for siblings of patients and Emily is doing play therapy with a psychologist. The child-life specialist has also suggested that Benjamin might enjoy "music therapy", which we will try in the coming weeks. As for the parents, last week I got complementary Starbucks coffee and a 10 minute neck and back massage. Nothing is overlooked here.

However all this alone wouldn't allow us to retain our sanity. We are also blessed with an incredible support system of family and friends who allow us to recharge the batteries or temporarily disconnect from our reality here at the hospital. Just the reminder that there is normal life outside these walls waiting for us to rejoin gives us hope and renewed strength. Not all patients are so lucky, and we see daily what a difference it can make. So even though we're not having turkey this year, I will enjoy my pumpkin pie and thank each and every one of you for your continued support and prayers. HAPPY THANKSGIVING!

The Veteran

Families come and go all the time in here, but there's a definite elementary school feel in how the families interact. Remember how the older kids would close ranks against the younger ones, claiming prime schoolyard space at recess and the back seats in the school bus. And then the older kids would move on to high school and you'd be the new older kids repeating the cycle. Same thing here, except that not all the older kids move on at the same time. I'm happy for the families leaving here for the last time, but at the same time I feel like we've been held back, flunked, while the rest of our schoolmates move up a level.

Tomorrow, one of our "gang" is being released. I'm absolutely thrilled for them, because they have had a very long, hard year. But that makes Benjamin one of the veterans of long term care on this floor. There are three others who have been here as long if not longer than him, but all the other faces are new - or newer. Two weeks ago another veteran mom and I had a chuckle over a newbie who was frantic over her child's beeping IV pump. Since this happens on average 10-15 times a day, it's become incredibly routine for us. I've actually gotten to the point where the beeping doesn't wake me up instantly anymore. What struck me as sad afterwards was not the fact that we found this woman's panic amusing, but that we knew enough to know that there was nothing to panic about. This woman's reaction was perfectly normal and understandable for most people; we should all react like that. But we've lost our innocence. Fevers and loss of appetite and pumps beeping are our normal. Our vocabulary has been enriched with words that only medical staff should know - and we can actually use these words in complete sentences! And new parents are looked upon with sadness, because they will too soon loose the looks of panic, and replace them with looks of resignation.

Our little veteran Benjamin is doing great. On Sunday his counts stabilized, and are now finally starting to go up slowly. His energy levels are through the roof - we're having a hard time containing him in his tiny room. Every time the door opens when he's on the floor he makes a beeline for it. He's pulling himself up on everything, and taking his first cruising steps. This activity is not without problems. There is an issue with Benjamin's Broviac, a crack where the lumens split. Although there is no leakage, he will probably have to back to OR to have the Broviac replaced before his fourth course of chemo starts. They always told us that this line could last from 3-6 months, and it's been just under 3 months. We figure that in an older, less active (or more aware) child it would last longer. But Benjamin is constantly getting himself twisted and tangled. And his cord gets spun around so much that it looks like a telephone cord, and I have to hold him and spin on the spot until I'm dizzy to unravel the line.

Roger and I managed to go to the visitation for the little boy last week. We went with several other parents from the floor. I've now waited in line only three times to pay my respects: Pierre E. Trudeau, Maurice Richard, and this little boy. It was very difficult and heartbreaking, but necessary for us to show solidarity and support to a family who had become family to us in the short time we knew them. It also gave us the closure we needed to move on here in the ward. Among the hundreds of mourners were most of the nurses not on duty, as well as other staff and parents of children no longer needing the services of 8D: proof positive of how close people get here.

So it doesn't matter whether you are a newbie, a veteran or a graduate. By the end of the process we'll have been all three. But like elementary school, in the end it's not where you sit on the bus that's important. What's important is that by the time you get off that bus for the last time, you're ready for the next step. And if you're not ready, they'll hold you back until you are.