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.
.
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.
.
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.
.
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.

.

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.

.

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.

.

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.

.

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.

.

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.

.

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.

.

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.

Angel Day

Angel day is a term Roger found when surfing the net for information on childhood cancers. It is the day that an afflicted child becomes an angel, and that happened early this morning for the little boy two doors down from Benjamin. It seems the right terminology, especially for a boy who's family always referred to him as an angel anyways. Saying that he's not suffering anymore and that he's in a better place is easy, and hollow. I can't begin to imagine what that family is feeling. They've spent the last six weeks preparing themselves emotionally for this moment, and I wouldn't be surprised if all that planning went out the window along with his little soul this morning. The only comparison I can make is an inadequate one but when I tried parachuting, all the hours of training and drills were shoved out of my brain by the sheer terror of free fall, until the parachute opening literally jerked me back to reality. Unfortunately for this family, their reality has been permanently altered to contain a gaping hole in the space their baby once physically occupied. Over the past weeks I've gone from pitying them to being impressed by their courage and strength in facing this head on. There was no denial, only acceptance and gratitude that they were loaned an angel for almost 20 months.

And now they have to move forward without him, and us without them. It's funny how everybody becomes like family in this little section of the hospital. But there's no reason for one branch of our family to be there anymore, and it feels weird. These are people that we didn't know three months ago, but we've wandered the halls together, shared a kitchen and bathroom, and talked late into the night about anything and everything. And now because their son/grandson is gone, so are they. Although we've commiserated with them, we didn't get to say goodbye.

.

So I'm saying it now. Happy Angel Day, M.; I'm sure the wings are more comfortable than the wires and tubes. And good-bye to your wonderful loving family. May they find the road ahead not too difficult to navigate.

The Week That Was

I know it's been a while, but Benjamin has put us through a mini heck in the past week. He was fine on Tuesday, and then hit the chemo wall on Wednesday. Finally, after three courses of chemo, Benjamin got a fever. All day Wednesday he was lethargic to the point of non-responsiveness. Every bodily fluid they could harvest was sent out for tests: blood, urine, stool. The night was rough, and Thursday was more of the same. Thursday night was a little scary because we thought that Ben would have to be transferred up to ICU because of low blood pressure. He wasn't in any immediate danger, but the meds to control the blood pressure require constant supervision and attention - thus the ICU. Luckily Benjamin never reached that bottom cut-off level and we stayed in 8D. However, we slept very little, because he was being tested every hour for most of the night. I finally got into my PJs at 3AM, after the doctor left for the last time. From that point on, Ben's pressure was only tested every 2 hours, but they had attached him to an archaic heart monitor (yay, three more wires to watch out for) which lit the entire room with an eerie green glow. Friday was horrible, because neither of us had slept much. Cranky baby and cranky mom - not a good combination. The only good thing is that Benjamin got a blood transfusion on Friday. My mom came in to spend the night and I went home and slept 10 hours. Of course, Benjamin slept the night too, and was on the road to being his normal self on Saturday. Lucky me, that he saves his most dramatic performances for me. On Friday they also started Benjamin on TPN, which is IV nutrition, since he stopped eating and drinking anything significant. He's received platelet transfusions on Saturday and today, Monday.

Benjamin still is running a fever, but is quite the happy camper none-the-less. In fact today he drove me nuts, sleeping less than two hours and wanting to be on the floor constantly. He can now pull himself up to standing in his crib and bang on the dome. The heart monitor wires are gone, as are all the IV lines except the TPN. We're waiting for his numbers to bottom out. When that happens (hopefully this week) it will be at least another two weeks before we're able to get him out of here for the next mini-vacation. The doctors warned us about this period. One called it "thumb-twiddling time". That doesn't make it any easier, especially when Benjamin is running fevers for no reason.

But right now, I'm going to call it a night, because it was a long day. I apologize for the terseness of this post, but lately I've had neither the time or brain power to think "deep thoughts". I just put Benjamin down an hour ago and walked out of the room. Hopefully when I go back, he'll FINALLY be asleep. And then it'll be time for me to get the shut-eye I so desperately need.

Luck of the Draw

Benjamin's 3rd course of chemo finished Sunday afternoon and now we're just waiting for his counts to first hit bottom and then eventually go up again. We've been really lucky so far in that Benjamin has tolerated the treatments amazingly well so far (as I knock frantically on wood). He was very restless last night and was scratching and rubbing all over his scalp and especially around his ears, where he had broken out in hives. They ended up having to give him Benadryl, but they have no idea what brought this on. The Broviac scar on his neck is also being treated with Polysporin because it hasn't been healing as it should. And this time he's drinking but not eating. But compared to the troubles some of the other patients have, this is a walk in the park.

In here it can be hard to keep stuff in perspective, since everything seems so unreal anyways. Walking into the kitchen and interrupting a family choosing floral arrangements for the funeral of their (still breathing) child, you think that you must be dreaming because it can't be real. But that's reality for you: in the world of make-believe no-one gets cancer and everybody lives happily ever after, but in reality cancer exists and it does not play favorites. So reality puts people into unreal situations, and it's the luck of the draw as to who gets picked.

I read today on a news website (CBC? CTV? I can't remember) that there is a theory that cancer is genetic. That's not to say that you are born with a cancer gene, but rather that certain combinations of genes lead to a higher risk of cancer. So mom and dad are fine, but how their genes are combined in the child is dynamite. So according to this theory, Benjamin will be justified when he yells that age-old teen-age refrain at us when he's sixteen: "I hate you; my life stinks and it's all you're fault".

Ultimately, it doesn't matter to me where the cancer came from. It's the end result that counts. The grandfather of the child two paragraphs up summed it up last night when I asked how it was going: "He had no chance". To what, live, love, jump, swim, ride a unicycle? You can end that sentence a million ways and they would all be true. But Benjamin has a chance, a very good one. And thanks to modern medicine, so do most of the kids on this floor. No matter how badly I feel for that family (and my heart aches for them), I can't help but be thankful that it's not us and pray that it never will be. That's the luck of the draw.

Into The Woods

People will sometimes qualify certain situations by saying "but we're not out of the woods yet". I wonder where that expression came from, and it insinuates that you somehow stumbled into the woods in the first place. In terms of literary references good, or should I say, normal things rarely happen in the woods. The classic example would be Shakespeare's "A Midsummer's Night Dream". And look at where Little Red Riding Hood met the wolf. Even Steven Sondheim (of West Side Story fame) wrote a musical called "Into The Woods", in which a cross-section of fairy tale characters find out that "happily ever after" doesn't really exist.

So to get out of the woods you must first be in them, and here in 8D we are all in our own personal woods. Some forests are larger than others, and so take longer to go through. Others are denser so it's hard to see where to go, and changes in direction are needed. Some families will never find their way out of their woods, while others will find unexpected paths out. I would describe our forest as large but easy to navigate, with occasional clearings - one of which we've just left behind.

All this to say that we're back in the hospital. Benjamin started his third course of chemo on Tuesday. He also had a bone marrow aspirate and they had 2 goes at a spinal tap. But because they kept on hitting a vein, he was put on the OR waiting list and went today. That was just great, because I was only informed this morning, and by then it was too late to feed him anything. By the time they got him up in OR, poor Benjamin had been over 18 hours without food or drink. But once he was back in his room he sucked back 2 bottles in 10 minutes. The results of the bone marrow are good, in that the doctors could not see any leukemic cells. That doesn't mean that they are all gone, but just that there are so few left that this sample didn't catch any. Essentially, we're back to where we were when Benjamin was first admitted in June. So we're not out of the woods yet, but we're getting there.

By the way, I'm blogging from the hospital. They seem to have lifted the restrictions off certain sites, so hopefully I will be able to continue. I'll post as often as I can from here, and periodically add pictures from home.

If We Took a Holiday...

No, we haven't dropped off the face of the earth. Benjamin was released from the hospital on Labor Day Monday, and only has to return for his bone marrow aspirate, spinal tap & next course of chemo on September 11th. So we've been on holiday this week. Benjamin has had the run of the house, and is truly enjoying his freedom. He's also eating non-stop whatever edible comes within his reach, except bananas. One bite and his eyebrows shot up and his face screwed up like he'd bitten into a lemon - classic baby what-the-heck-was-that? face.

It took a couple of nights for Benjamin to get used to sleeping in his crib, but now he goes down for naps no problem. I just hope we can carry that habit back to the hospital. The difference is that here he's only in his crib to sleep, but in the hospital he's in his crib much more often, especially when he's confined to his room and I have to step out.

Benjamin's next course of treatment is really going to take it's toll on all of us, I think. This course is actually called "intensification", and is 5 days of chemo (3 different drugs). 24 hours a day. Do the math, that's 120 straight hours of chemo. Just the thought of it, and of the side effects which will certainly follow, sends shivers down my spine. The first two courses were walks in the park compared to what is coming up. It breaks my heart knowing that our little guy, who is just unstoppable and the picture of perfect health right now, will be deliberately brought to the brink, and be made absolutely miserable in the process. But that's the only way to make sure that the cancer is permanently eradicated, and I know he'll bounce back eventually.

We're trying not to think about the coming week too much, but to enjoy this precious time together with our little family all together. We only hope that Benjamin's stair climbing escapades don't send us to the ER for reasons other than leukemia. (He's getting the hang of going up the stairs, but when he's had enough or wants to go down he just sits down with his bum hanging off the step and pushes off with his feet against the riser.) What I've really noticed is that Emily finally has some sort of sisterly feelings towards Benjamin. Before, except when she was singing her songs to him, she just tolerated him until he invaded her personal space. She is definitely more patient with him, although it's still far from perfect (we caught her "pushing" him away from her with her foot today). I think Emily's realizing that Benjamin adores her, and mimics her as much as he can. When she laughs, do does he. When she raises her arms above her head or claps, so does he. So maybe she's just on a power trip, but she will spontaneously hug him or kiss him now. These snippets of true affection give me hope that a real caring relationship between siblings might one day develop. In the meantime, I should go and enjoy my holiday while it lasts.

I'm Ready to Go Home Now

We've been waiting for almost a week for Benjamin's nutriphils to come back up. All his other numbers are already back to normal, but those darned nutriphils are driving us nuts. Why are they so important, you ask? Nutriphils make up about 65% of your white blood cells, and are necessary to fight off infections, so we kind of need them in Benjamin before he'll even be allowed out of his room. The good news is that once they start coming in, they really skyrocket. Yesterday, Benjamin was at 20 and this morning he was at 210, which means that hopefully he can come home for a little holiday by tomorrow at the latest. Here's hoping.

I think we're all going a little stir crazy in here, especially Benjamin, who, until today, could only look out of his window at the rest of the ward. After all, there's only so much exploring even a 13 month-old can do in the same room for 3 weeks. Right now, every time I put Benjamin on the floor, he makes a bee-line for the door. And he's figured out how to pull himself up and swing his leg over the crib rail when it's not totally raised. It's like he's planning and practising his escape. Next thing you know we're going to discover a rope made of blankets tied together hanging out of the crib, and a rough sketch of the hospital floor plan tucked under his mattress. So even if we only get 2 days home, it will still be better than nothing. And if the weather cooperates, we could even get some quality time outside before it gets too cold.

At least today, Benjamin was allowed out of his room, as long as he stayed away from the other "inmates". But it was just such a joy to be able to eat in the kitchen as he sat in his stroller gnawing at a bread stick. And after his initial confusion due to his being on the other side of his door (like Alice in Through the Looking Glass), he enjoyed it as well.

It's pretty much given that the 3rd course of chemo will start this week. This time it's "only" going to be 5 days, but they will be pretty full days, and it will probably hit Benjamin hard. This isn't something that you get used to, either as a patient, or as a parent watching. Everybody tell me that this is the best age, because he won't remember any of this. And as we always say, he might not remember, but we'll never let him forget (we've got pictures, video and this blog). Although, we might find twenty years from now that Benjamin has deathly phobias towards blue gloves and yellow paper gowns. But by then I'll probably be in therapy anyways dealing with everything I'm currently suppressing or masking with my ridiculously fabulous wit and humor. Do you think therapists give BOGO deals?

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.

.

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.

.

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!!

.

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.

.

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.

.

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!

.

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.

.

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!"

.

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.)

The Days Are Just Packed

It's funny how exhausted I am when you consider how I spend my days. I mean, when I'm at the hospital I spend all Benjamin's awake time trying to keep him stimulated, entertained and happy while simultaneously confining him to his crib or a 4'x4' foam mat on the floor. Should be a piece of cake, no? No.

As you can see, except for the feeding tube Benjamin does not look sick - and that came out this morning. He's eating real food again, although we're still working on the bottles of formula. His blood counts are already coming up again, and he stopped shedding. The chemo seems to have left his system. Which means that Benjamin is an essentially healthy boy (he's still very susceptible to infections) who's getting healthier by the day - and thus harder to control. I can't wait until they tell me that we can leave the room, even if it's just to go down the hall to the playroom. Hopefully that day will be very soon. At least when we're allowed out of his room, I can put him in the stroller and interact with some of the other "inmates". There are at least 3 other moms that I recognize from our last visit in June. Some families, like us, went home for a while and came back. Others haven't left yet. And we're all waiting, but we make the best of it. One older patient made cupcakes for everyone in the ward yesterday (Benjamin loved his). Once a week there's free cookies and coffee. And the parents with babies or toddlers in isolation (there's at least 3 of us) sneak out of their rooms when they can to gossip, check e-mail, eat, shower, do laundry, etc. while the children nap.

See, this forced isolation of Benjamin also becomes a forced isolation of his keeper. When he's awake we can't just leave him for 30 minutes to eat or take a shower. And eating in front of him is torture for both of us, because no matter what I'm eating and how wildly inappropriate it is for a baby's system, he wants some. (Have I mentioned Benjamin got his voice back?) I've started hoping that he naps around lunch and dinner, just so I can eat at somewhat normal times. And if I thought showers were a luxury before....

But that's all just whining and griping. The important thing is that Benjamin is getting better. And the faster he gets better, the faster they can start the next round of chemo, and we'll be that much closer to putting this all behind us. Now if I could just teach him how to use the PlayStation....