Deja Vu All Over Again

Once again I am apologizing for the long break between posts, but when everything is going well, there's not much to write about. After all, who cares what we had for breakfast or that the kids had naps!

Before I detail the present, allow me to back-track a bit. Winter was absolutely horrid, in that we almost broke a 30-year record of just under 4m total snowfall for the season. Of course the kids loved it, especially Benjamin who had no recollection of snow what-so-ever. For him (to my constant horror) it was great fun to see what snow feels like in ungloved hands and in between bared toes!

Having booked a family trip to Florida for late April, we were determined to have Benjamin's Broviac removed so he could enjoy the sun, sea and sand. On the appointed day in March I brought Benjamin to the day surgery center at the hospital where he was prepped and changed into a gown, before the wait started. He had been fasting since the night before, but never complained. (I'm still amazed at how he takes these things in stride.) Hours later, before being taken into the operating room, one of the surgeons asked to take a quick peek under Benjamin's gown to check the Broviac site. To every one's amazement we could see that underneath the clear dressing, Benjamin had already pulled out most of the Broviac himself. So no surgery, no general anaesthetic, and no reason to have been fasting! Outside of the operating room, on an empty gurney in the waiting room (and probably to the horror of the other parents there) five surgeons crowded around Benjamin (one with a digital camera) to pull out the remaining two inches and put a bandage over the hole.

We had a wonderful time in Florida, at Club Med Sandpiper in Port Ste. Lucie. We were there with two other families, and the kids and adults all had a blast. The children were well taken care of at their respective clubs (Baby Club Med for Benjamin & Petit Club Med for Emily), which allowed the grown-ups to relax. Besides the obligatory pool-side lounging and daiquiris, Roger and I golfed, played tennis & tried archery. I even made a pathetic attempt at the trapeze. At the end of the week, the children put on little shows for us. Emily was the star of her show - probably because she was one of the older kids in her group and the only one to actually listen to instructions. All in all a great trip with good company and fun times - and well deserved, if I do say so myself.

But fate has a way biting you in the behind. On May 12th, nine days after returning from Florida, and 3 days after a routine remission check-up with no complications, Benjamin suddenly started having localized seizures involving only his left leg and arm. Roger rushed him to emergency, where an IV was put in for medication to control the seizures. Then at 2AM they performed a CT scan, where an "enhancement" was seen on the right side of his brain - explaining the seizures. Of course Ben was admitted, but not to the cushy surroundings and relative opulence of 8D. Rather, he was relegated to a 4-bed ward on the 6th floor. And then the tests started again.

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This time the first thing was an LP (lumbar puncture) and bone marrow biopsy to rule out relapse. The results were inconclusive, so a sample of the bone marrow was overnighted to a central lab in the states. Then came the EEG: let's hold the poor kid down to stick 26 electrodes around his head and then ask his mom to make him fall asleep! And when she finally succeeds, let's wake him up to flash strobe lights in his eyes. All brain activity was normal except for where the enhancement is. There the brain activity is consistent with seizure affected areas. Duh! This was followed the next day by an MRI, to get more details on the enhancement. All the while, Benjamin is having seizures regularly every evening lasting anywhere from 20 minutes to 1-1/2 hrs - they moved us from the ward to a semi-private room so as not to disrupt the other patients. Finally the verdict is in, both from the US lab and from the MRI: relapse. The only option is bone marrow transplant, which requires chemo treatments to bring the cancer to an acceptable level for transplant and radiation to kill off the last of Ben's marrow before the actual transplant.

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To fully explain what they saw on the MRI I will use a food analogy. In between the brain and the skull is a thin protective membrane, like the casing of a sausage. But on the front of the right hemisphere of Benjamin's brain and going down between the two hemispheres, this sausage casing is more like an orange peel. One doctor actually calls it a rind. It is not a tumor, or accumulating fluids, but rather more like the growths which exploded all over Benjamin before he was diagnosed the first time.

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That was a week ago. Since then Benjamin has had surgery to have a new Broviac inserted (his 4th!); he has has two more LPs, both with intrathecal (IT) injections of chemo directly into his spine. We've moved back to the Ritz (8D) and started chemotherapy on Tuesday. The doctors are using a new drug which is approved to be used only for relapses. It is very strong, and has made Benjamin very sick to the point that he is now on IV nutrition because he hasn't kept anything down for 4 days. It also threw his kidneys completely out of whack, so they suspended chemo on Wednesday to make sure his levels were OK.

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Thursday's chemo was better, but Benjamin was still lethargic and miserable, so they did another MRI on him this morning. There they could see that there was swelling around the rind, and that he would require radiation sooner than later to relieve the swelling. So the wheels were put in motion and by 6PM, Benjamin and I were in an Urgences Sante ambulance with an anaesthesiologist and her technician, going up the hill to the Montreal General Hospital for radiation. It sounds impressive, but this is common practice. Since the Childrens' Hospital does not have the equipment, all patients are transported up the hill and receive first-in-line treatment at the adult hospital. It's not a long ride, and we were back in our room within the hour, but there's one big reason to have the "Super-hospital".

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As you can imagine, we are still a bit shell-shocked. Benjamin's 4 months of remission were such a joy and went so well that it is hard to believe that within one week we've gone from trying to control a very rambunctious toddler hell-bent on causing himself bodily harm to worrying about the same child's cancer treatment AGAIN! That's deja vu for you.

The Year in Review (FINALLY!)

To any one still reading: I'm back! Sorry it's been so long, but Roger picked up my slack - thanks, Roger. After what I described in my last posting, I needed a break. And actually, Roger and I just came back from a weekend away from it all (including the kids). We spent a very nice weekend in Baie-Saint-Paul (on the north shore of the St. Laurence River, upriver from Quebec City) and went skiing at Le Massif. Having not skied in essentially three years, my fingers are pretty much the only part of me still functioning without pain, but it was absolutely beautiful, and much as we love our children dearly, we needed the break. So here I am, mentally if not physically refreshed.

I promised some moons ago a year in review post, so let's see what I remember. Even now, thinking back to what happened to Benjamin starting in May is like trying to remember a dream where you just get snippets and impressions with a few crystal clear memories. Thankfully we have this blog and as well as photos and video to document Benjamin's journey. But we also had a life outside the hospital, and that's what I want to remember and remind people of today.

In late spring, my parents took a dream vacation cruising the Caribbean and crossing the Atlantic into the Mediterranean Sea before traipsing through Italy, Germany and England visiting friends and relatives. In May, Roger and I celebrated out 5th wedding anniversary. In June Emily started taking swimming lessons alone without a parent. She also started riding her first bike with training wheels, and honing her soccer skills with a little baby net in the back yard (Daddy and Uncle Dan made sure she had the post-goal victory celebration down pat).

Over the summer we were kitchenless for two months as our kitchen from hell was replaced with our dream kitchen. Emily attended several birthday parties, whacking valiantly but fruitlessly at pinatas at each one (quite the sight, I am told). She was also introduced to face painting and those huge inflated obstacle course/slide thingies at the D.D.O. Family Fun Day. The fun continued at the Shriner's Circus, again Emily's first. The summer was also full of the usual barbecues and picnics, happily attended by whichever family members could make it.

Fall brought more firsts: Emily started pre-school three mornings a week (she loves it) and her first gym class without Mommy. Uncle Dan and Aunt Courtney took Emily to see Nemo in Ice, much to her delight - even if the whale was just a bit scary. Octoberfest was followed by a huge Halloween haul in Blainville by a little lion and her dear friend Batman. The seasons changed yet again and more fun was had at the St. Nikolaus Christmas party, the Westpark Pre-School Breakfast with Santa and the Leucan Christmas party. We also managed to have a very nice family Christmas.

All this to say that even though Benjamin, and by extension usually either Roger or I, was stuck in the hospital, we still found ways to have fun outside the hospital. Of course it helped that everything was going smoothly on 8D. Every day we were there I said to myself: "Thank God Benjamin just has AML!" (And if you would have told me six months ago that this would become my mantra, I would have snorted so hard that coffee would have come out my nose). Compared to many families on the floor, our time there was an absolute breeze. Yes, there were bumps in the road, but at the end of the day we walked out of this hospital for good with our boy alive and well.

One of the psychologists here asked us how we kept such a positive attitude. Part of the answer is that it's easy to be positive when you never get any bad news. I mean even the diagnosis was a relief rather than a shock. Maybe I'm just a silver lining kind of person, but it seems to me to be easier to get through the days focusing on the good rather than the bad, what ever your situation is. It would be too depressing otherwise, and I don't do depressing very well. Besides, we took our cues from Benjamin, and he was such a little trooper. He really only complained when something was very wrong - there was no crying wolf with him.

So, as you can see, we actually had a pretty decent 2007, all things considered. It certainly wasn't ideal, but the worst parts were really the first admittance in June and the days before the diagnosis. We joke that Benjamin's treatment can be summed up as follows: two fevers and a stupid Broviac. Even Dr. Mitchell said that treatment of AML doesn't get any faster or better than Benjamin's. But don't get me wrong - I'm still happy to see 2007 gone, and don't need another year like that any time soon. I'm just saying that it could have been much, much, much worse.

My 2 Cents!

I guess everyone was expecting Micaela to write another beautiful blog on how the Skira clan is getting along these days. Her thoughts combined with the colourful use of the English language made her blog entries well worth reading, as well as giving everyone much food for thought! Well, this time it’s a little different - a WHOLE lot different! Dad will be making his first blog entry and I suspect it will probably be the last. I think there were a couple of reasons why I never posted a blog: 1) Micaela does such a good job so why I should I screw things up! 2) The blog site was and still is her method of therapy and 3) She was the one who spent the most time on 8D during Ben’s 6 month stay. She was the person who could best describe what life is like in the Haematology/Oncology unit of a children’s hospital. Since we are no longer staying at the Children’s, I decided that this would be a perfect time to make my first blog entry.
First, a few words on the person responsible for keeping this blog up to date – Micaela. I sure everyone realized how strong Micaela was through this time but I wanted to show everybody how tough she really is. When we first found out Ben was diagnosed with AML, I broke down. I couldn’t believe this was happening to Ben. My wife on the other hand kept it together and was already prepared to move on to the next step. When I asked Micaela how come she didn’t break down she replied “I carried Ben for 9 months and I gave birth to this child. He’s not going ANYWHERE!” I certainly wasn’t going to question her conviction. She was totally convinced from the beginning that everything was going to work out well. That’s been Micaela’s MO throughout this whole ordeal – unflappable confidence and 100% optimism that Ben will beat this terrible disease. I’m privileged and forever grateful to have a wife like Micaela. Now most of my friends would argue what did Micaela do to deserve a husband like me, but I guess we’ll keep that discussion for another day!
Between Emily, Micaela and myself, Emily had the toughest time dealing with Ben’s stay at the hospital. One moment we are all together having a great time and the next moment our lives are turned upside down and all our focus is on Benjamin. Emily went from playing with Benjamin and Mommy all day long to being shipped from one grandparent’s home to another and not able to see Mommy, Daddy and Ben all together. Even worse, as Benjamin began his road to recovery, she couldn’t understand why we were still in the hospital when he looked very healthy. You can’t explain to a 3-year old neutraphils, low CBC counts, leukemia etc. As much as we tried to explain what was going on with Ben (“his blood is sick and he has to stay here so the doctors can fix it”), she couldn’t understand it. However, 6 months flew by pretty quickly and at the end she did pretty well. Now she’s extremely happy that everyone is at home together. She doesn’t like it when Ben pulls her hair or pokes her bellybutton or grabs at her.
And now we get to the man of the hour, Benjamin. It’s been a month since he’s been home and he is doing great. On January 22nd Ben had a bone marrow aspirate and lumbar puncture to make sure he had no cancer cells. Two days later the doctor told us everything looks clean. He’s a healthy boy!
At home, Benjamin is active, energetic, loves to play with Emily, goes up and down the stairs at lightning speed, drinks well, eats healthy, eats a lot (like his old man!) and is extremely busy. On the flip side, Benjamin doesn’t listen, makes a mess of everything, makes a mess when he eats, cries when he doesn’t get his way, destroys everything in his path, tries to kill himself every chance he gets and he has both mom and dad completely exhausted by the end of the day. You know what: We wouldn’t want it any other way!
Happy Valentine Day’s everyone!

It's a Mad, Mad, Mad, Mad World

Regular readers of the blog will remember my friend, the highly pregnant fellow inmate with the marital difficulties. Well she delivered a healthy child in the middle of a December snowstorm, and this morning lost another. Her little girl, just three weeks older than Benjamin, died suddenly this morning of cardiac arrest, a rare but long term side effect of the chemo. That's the thing about chemo: if the cancer doesn't get you, the chemo just might. And she had been doing so well recently; after months of disappointments and setbacks, the chemo was working and getting rid of her tumors.

Luckily, or unluckily as you would have it, we were in clinic today for Benjamin's last spinal tap and bone marrow biopsy (to officially declare remission), and then for an echo cardiogram (heart ultrasound). I was advised within a half hour of the passing that the family was still up in ICU so I abandoned Benjamin to the social worker and ran up to the ICU to offer what condolences and support I could. We held each other and cried, and then she was on the phone making arrangements while I ran back downstairs to rescue the poor social worker from Benjamin. This woman, this bereaved mother is an absolute rock, an amazing pillar of strength, and we know that she'll power herself and her family through this just because there is no other choice. But I don't even know what to write any more. I'm so sick and tired about writing about children dying. I'm sick and tired of having to break the news to other families who have children in the same boat. I'm sick and tired of wondering who's next. It's not fair, and it will never ever be fair, and I'm sick and tired of that too.

Needless to say it was an unsettling day, but back in Benjamin's world all his procedures went without a hitch, and we will find out the results in two days. In the meantime we will continue with weekly visits for maintenance on the Broviac until it comes out (hopefully within the next couple of weeks). The scary thing, especially in light of what happened this morning, is the echo - not because of the procedure itself, but because of what it represents. Benjamin was given enough drugs in a high enough dosage that his heart will be monitored on a regular basis for the rest of his life. Now I know that the little girl's family has a history of heart problems which probably put her in a higher risk category for heart failure as a side effect. But until now that particular side effect was an asterisk, one in a million, it will never happen to Benjamin kind of thing. Now we know that it can happen, and happen so suddenly and unexpectedly that even the doctors and nurses are shocked and in disbelief. So while we are physically free from 8D, the ties that bind continue to hold us fast, ensuring that we will never truly be free, even when we're in remission.

On a personal note, I got a job (and maybe two)! I'll be doing the bookkeeping for a home-based company 5 minutes from us a few days a month. As well, I offered my accounting expertise to a parent in the ward who has his own law firm, and it looks like he's taking me up on it. I'm excited, not for the paycheck, but for the sense of normalcy I hope it will bring, that things are falling back into place after being out of whack for so long. We'll see how that works!

FREEDOM!!

THANK YOU DR. MITCHELL!!!

So Sunday morning I'm pushing Emily around Costco in a shopping cart full of industrial sized diapers and detergent, when my cell phone rings. It's Roger at the hospital telling me to drop everything; we've been discharged! AACK! Not enough warning! I pay, dump everything at home, grab a bunch of empty bags, transfer Ben's car seat into my car, bring Emily to the in laws and rush to the hospital - all at lunch time. Luckily being discharged also means having to empty our shelf in the parents' fridge. So this is it - exactly six months and 2 days after Benjamin was diagnosed and chemo was started (186 days!), he's going home a healthy boy. The only thing left now is to check his bone marrow and spinal fluid one last time, and if his counts are high enough, remove the Broviac (that's all scheduled for Jan. 22nd). The only meds he is still on is an antibiotic which he will take 3 days a week for the next two months. And apart from that it will simply be monthly CBC blood tests for the first year to monitor his counts, and then annually.

The on-duty nurses threw a little farewell party for Benjamin, with a few parting gifts (a medical toy set, a teddy and a quilt) and plenty of hugs, while Roger made at least four trips to the car laden with Benjamin's "accumulated wealth". Right at the beginning I made a promise to myself that Benjamin would walk out of here. So, much to the joy of us and the nurses, and bundled up in snow suit, scarf and hat, Benjamin toddled down the hall from his room to the nurse's station and elevators to receive more hugs before being guided out the door.

I was emotionally overwhelmed. In my mind I had for some reason picked January 15th as our "check-out" date, and was mentally and physically preparing for that. But to be "kicked out" on a Sunday, when you haven't said your farewells and thanks to various people who only work weekdays, or nights or who are coming back on duty! The suddenness of it all made it feel a bit like I was expelled from school or fired and escorted by security to the door so I wouldn't steal office supplies. I know it is hard to believe, but even though it was difficult to live in 8D, it came to feel like home, with the nurses and other families becoming our extended family. Leaving this all behind to (hopefully) never come back as a patient really feels like a graduation. There is such joy at knowing that a chapter of our lives is finally and permanently behind us, and that we can now look to the future once again. This finality also brings sadness thinking about the people left behind, both staff and other families, who have helped and supported us. I've often joked that when we leave I'll come back looking for a job, but now it doesn't feel like a joke anymore. One thing's for sure - when the kids are finally settled in school I'm going to start volunteering one day at the hospital. It seems the very least I can do to pay back what they have done for us.

Even though our time living at the hospital is over, our journey in the world of leukemia is not. I will continue to blog not just our progress, but my ramblings and musings, for all who still wish to follow them. This blog has been an incredible outlet for me these last six months and you, the readers, have been my therapists, supportive and non-judgemental, allowing me to vent and rant when needed. I feel that there is still much to say and many more pages to fill, and now that we're home hopefully I'll find the time to do this on a more regular basis. In the meantime, WE'RE HOME! Please feel free to call.

Chaos: Part 2 and Another Passing

OK, so where was I? At the end of the previous post Benjamin was being drugged with Gravol to prevent him from standing up, thus preserving his two precious IV lines in his feet. Thankfully (and right in the middle of my New Year's Day Concert from Vienna) surgery came to get consent to insert a new Broviac early the next day. So less than 48 hours after the first surgery, Benjamin was back under the knife. Again this was not without complications. It turns out that while inserting the new Broviac, they accidentally punctured an artery. A longer observation time in the recovery ward and a few extra X-rays ensured that there was no internal bleeding. With that Benjamin and his new Broviac (this time on the left side of his body) were given the green light, and the IVs in his feet were removed. Within hours, although decidedly shaky and unsteady, he was back up on his feet.

The one side effect of all these days of surgery which I had never even considered, was the return of Benjamin's dread of nurses. Over the last six months our little guy has become quite the favorite with the nurses because he so patiently goes along with all they ask of him. He opens his mouth eagerly for his medications, he holds his arm out for the blood pressure cuff and tries to take his own temperature. He laughs when his dressings are being changed, and says "uh-oh" and points to the call button when his pump starts beeping. But for a couple of days after these procedures, until he realized that the 8D nurses weren't out to get him, he screamed bloody murder any time any of them got close. Luckily that phase is now behind us again, but some kids are like that all the time (we know - we hear them). I don't know how the nurses do it.

Now while all of our drama is unfolding, there is more drama on the floor. I think I've mentioned the child who returned to the ward after only three weeks of remission. She passed away last Friday (Jan. 4th) after fighting valiantly until the bitter end. It was not a surprise, and her extended family was holding vigil in the days prior, just waiting. This was another case of ugly, ugly tumors. Essentially, the tumors in her lungs just grew and grew until ... well, you know. I spoke briefly with her mother late one night near the end, and she told me "She's fighting for her life, but every breath she takes breaks my heart". That brought me back six months to the day when we watched Benjamin struggle to breathe until they decided to intubate him. But at least we had a way out - one that kept our child with us. This family had no choice but to watch their little girl fade away.

The visitation was this past Monday, with the funeral mass the next day. Roger and I got to the funeral home early and had paid our respects and were on the way back to the hospital within 45 minutes. Later on in the evening, the line snaked back and forth at least four times, with upwards of 300 people waiting over an hour to offer their condolences. And the next day it was standing room only at the church. A proper and fitting send-off for a child who fought her illness long and hard before succumbing. May her family one day find the same peace she now has.

Chaos Reigns Supreme

I had a wonderful introspective look back on 2007: The Year That Was planned as my next blog post, but fate decided to intervene not once but in several separate ways. I will get to that entry eventually, but right now there is much updating to be done.


Unfortunately the Internet security settings at the hospital have been tightened once again, so I am no longer able to blog from there (talk about writer's block - literally!). That means that blogging will have to be squeezed into my already hectic time at home, but I will continue to do my best.


Christmas was very enjoyable and relaxed in 8D. This is the first holiday season where we weren't the ones rushing from place to place, and it was nice to have family come to us instead of vice-versa. Of course, there was a fair amount of driving to and fro with Emily, but other than that it was quite fun. Both children got spoiled with gifts, and everybody had a blast. Leucan hosted a brunch for the 8D families on Christmas day, and two days later a caterer treated the floor to a gourmet lunch buffet. On the 28th, the Fassinas had their traditional Christmas fondue and gift exchange, and the Skira turkey lunch and gift exchange was on the 30th. And although we did have to give the Charlow turkey dinner a miss this year, the left-overs delivered to us were delicious.


Of course we can't expect everything to go smoothly, and so Benjamin decided to throw us a curve ball - or at least his Broviac (the central line) did. On December 29th, after almost 6 months of use (the last two months of which it was securely taped to Benjamin in a futile attempt to prolong it's life), one of the lines on the Broviac started leaking fluids through hairline cracks. The offending line was immediately clamped with large rubber tipped surgical clamps - a temporary fix, especially since we had to tape the clamp to Benjamin's chest to prevent it from hanging down between his knees. They finally decided to try to either fix or replace the Broviac on New Year's Eve, so with less than 9 hours til the new year Benjamin was in the operating room.


Before I go into what happened next, I just want to explain the Broviac a little more. It is a central line or catheter which is threaded under the skin and into an artery (ideally under the clavicle, but otherwise in the neck). It is not a needle, but rather a length of flexible thin plastic tubing, and to insert it (or repair it) you require a length of wire to be threaded through this tubing to give temporary rigidity. Once in place the wire is removed from the tubing, and the insertion scar is stitched closed. Now, Benjamin's Broviac was hell bent on ruining as many New Year's Eves party as possible. The wire was inserted into the existing tubing and got caught on something within the tubing. This caused the tubing to separate completely from the rest of the Broviac, and be pushed further down the artery towards the heart, with the wire still stuck in the tubing. Pulling back got nowhere as swelling was preventing any backwards movement. So a team from cardiology had to be assembled to insert a tube into Benjamin's femoral vein (in his groin), which would then run up through his heart and out the other side so that a teeny tiny lasso could catch this delinquent piece of tubing and pull it out through his groin. Just assembling the team took a good couple of hours as the on-call cardiologist was not qualified to do this procedure, and there seemed to be some problem finding one who was willing to sacrifice his evening.


Benjamin was transported from the 10th to the 3rd floor (where the special angioplasty rooms are), and more than 4 hours after he went into OR the tubing and the wire were removed - not by the cardiologist however. The plan was for the surgeon to pull out the wire from the top and for the cardiologist to lasso the tubing from below. My theory is that in all that waiting for the necessary staff to be assembled, the swelling around the wire and tubing subsided. Because the wire and tubing were well stuck together, when the surgeon finally pulled on the wire to allow the cardiologist to do his thing, he pulled out the tubing too! Roger and I knew that they had removed the piece when we heard roars of laughter from the OR and shouts of "Good job!" By 11:00 Benjamin was finally back in his room, and I was able to dash off to my parents' house in time for a quick midnight toast before collapsing.

But after all of this Benjamin now had no more central line and needed the 2 IV lines which had been put in his feet. And that meant that until a new central line was put in, we needed to keep him off his feet to save those lines. Luckily New Year's Day, he was in no shape to even try to stand until late evening, and then Gravol was all that was needed to keep him down and put him to sleep.

We will continue this story in another post, but now we have to go to the visitation for a patient who passed away on Friday night. That's another post too.