It's Alive (& So Are We)!

I'm baaack! First of all, to all the people freaking out because I haven't been posting, Ben's OK. We're back home having been discharged (finally) on September 17th. It was a long haul (77 days straight), and Ben didn't make it any easier on himself, or on us for that matter. But our days in 8D are hopefully behind us. Now we just have to go to clinic on a regular basis (1-2 times a week) to check his blood and bio-chem levels, and Ben is still receiving IV immunoglobins over 4 hrs once a month. Most of Ben's nutrition, 8 different meds and most of his hydration is administered by us through his feeding tube - which Roger and I are now expert at replacing ourselves, as it has come out several times overnight. We've also become masters of the Kangaroo pump, through which his overnight feeds are run. So basically, our lives at home are back to normal.

But what, you ask, happened in the last four months? Well, besides the replacement of Ben's last Broviac, two bouts with C-Difficile, unexplained temperature fluctuations and vomiting, the death of a child on the floor, and the terminal relapse two more - not much. As you can imagine, even a superhuman person such as myself needs to step away and take a break every once in a while. Actually, not long after Ben's birthday, I started informal sessions with the floor psychologist just to talk and vent - stuff which I had previously only done through this blog. Having hashed through everything once, I didn't really need or want to do it again, especially since the only time I had to write was at night when I was completely exhausted and unmotivated anyway.

Early August, the doctors finally decided that Broviacs and Benjamin do not mix. Broviac #5 was removed and replaced by a port-a-cath, which is essentially a port nestled under Ben's skin by his left clavicle. It is accessed by poking a needle through the skin, which is then secured with gauze and a dressing. Right now Ben just gets accessed for his once-a-week blood "donation". But once that tapers off, we can go a month with zero maintenance on the thing.

Our weekly hospital visits are a bit of a drag - not that we're complaining. But because Ben is post-transplant, we have to stay in an isolation room in the back. And although we're just there for routine stuff, the visits tend to last minimum 3-4 hours, what with all the waiting involved. Now you try to keep a very active toddler occupied & distracted in a small room for that long.

After 3 months of only being fed through the feeding tube, Ben is finally starting to eat a bit again. Unfortunately, until he is completely off the immunosuppressant drugs he is on a restricted bacteria diet, which makes finding foods that he is allowed to eat and that he also likes a challenge. Right now we are being indulgent & Ben is on a diet made up entirely of Doritos, pickles, yogurt and Cheerios.

We are getting back into a normal routine however. We were able to take Benjamin trick-or-treating for Halloween this year, which was so much fun. Unfortunately, he will have to miss most of the Christmas parties, but he will be going to the biggest one hosted by Leucan, the regional childhood cancer support group. So all in all, life is good. We are taking it one step at a time, but I don't see how Ben can't be cured. He is simply exhausting. It takes all my energy and then some to keep up with him, especially since now he has an older sibling to emulate. God forbid that Emily try to do something without Benjamin trying too.

In other family news, I'm thrilled to announce that Emily & Ben will be cousins (& I'll be an aunt - yay!). My brother and sister-in-law are expecting their first child in late May. So far, everything has been fine, and we hope that trend continues for the duration of the pregnancy. Congrats, Dan & Courtney!

So that's it. We're all getting on with life, but the blog will not be abandoned. After all, Ben's not out of the woods yet. So please continue to check in periodically, & I'll try to post at least once a month.

Whoo-Hoo, Look Who's Two!

Here's to another milestone passed - on July 23rd, Benajmin turned 2! And what a miserable day it was. But more on that later. First I need to backtrack to the day after my last post.

You will remember from that post that I was complaining about the problems with Broviac #4 and how they were going to come to a head. Well, I should get a prize for foreseeing the future because less than 24 hours later it popped and that night Benjamin went for emergency surgery to replace it. That's right folks - no joke, Ben is now on Broviac #5. What happened was that with all Ben's moving around the inner tubing of the Broviac got hopelessly twisted and kinked underneath the outer lining. So even though the Broviac looked straight it kept on blocking and when they tried to unblock it the inner tubing burst. Roger was in Calgary on business, and his sister was supposed to stay with Benjamin that night so that Emily could come home with me. Instead we're off to the hospital so I can sign consent forms and Emily is shunted off to my parents' house for yet another sleep-over. It was a bad case of deja-vu right down to the surgical team, the same one from the New Year's Eve debacle. This time everything went smoothly, and Benjamin was back in his room at midnight.

Of course that was then, and a whole week has passed. Guess what! Broviac #5, which was so perfectly placed a week ago, has already started slipping. It got to the point where today the surgeons came to add another suture to try to keep it from slipping out more. Written like that it sounds like nothing, but think about it. A numbing cream was put on the site, and then with a nurse, a surgical student, my mother, and me holding Benjamin down a surgeon stitched the Broviac tight to his skin while the poor kid howled, but never moved. Now we have to keep it taped down and as free of tension as possible - tell that to Benjamin!

Back to Ben's birthday. It started auspiciously when he vomited all over himself in his bath, and the feeding tube came out at the same time. In fact, the tape on his face in these pictures are from that tube. And I think these pictures show him as happy as he got that day. Before a new feeding tube could be put in, he needed transfusions to bring his counts up. And when they finally went to do it the positioning of the tube was bad so they had to take it out and do it again. He's had diarrhea so bad that his entire diaper area was flaming red and super sensitive to the point that he's back on morphine just to make the diaper changes bearable. I'm told that when the nursing staff came to the window to sing "Happy Birthday" he was just crying "no, no, no". See I wasn't even able to be there the whole day because I was in the emergency room of another hospital trying to take care of myself. Just call me Miscarriage Mic or something. I go through pregnancies the way Benjamin goes through Broviacs (this one was #5). In a way it's just as well, since the timing was crappy. When they stick, I don't do the first trimester very well. It's constant nausea, no appetite and fatigue that renders me near comatose - the perfect recipe for looking after an active toddler confined to his room on a leash of multiple IV lines. Of course, the timing of the miscarriage was crappy too. A day earlier or later would have been fine, thank you very much.

Besides the Broviac and the birthday, overall Benjamin hasn't had a great week. All the classic signs of engraftment and the Graft vs. Host (GVH) disease are happening. Which means fevers and rashes among other things. The steroids Ben is being given have turned his terrible twos into a nightmare. A more contrary child I have never seen. He even cries "no, no, no" in his sleep. Roger said today that this week has been the worst since Ben's relapse, and it's true. All the doctors and nurses are pleased to see these things happening to Ben because it means that the stem cells are taking and starting to reproduce, but we fell like at this moment we've lost our little guy. But he'll be back and we're giving you all advance notice that this time next year we'll be throwing Benjamin the most rocking party a 3-year old ever had. AT HOME!

Feeding Tube Blues

This is an experiment in new technology for me. Roger took the digital camera to Calgary, where he is on a business trip. Left cameraless and wanting to post new pictures, I plugged in the webcam which comes with the laptop in the transplant room. These pictures are the result - not the best resolution and a little blurry, but they do the trick.

At least you can see that Benjamin is happy and won't stay still for anything. And he has a feeding tube. One of the first things they did Thursday morning post-transplant was put in the tube. A very common and totally expected side effect of the conditioning is mucositis - basically cold sores all the way from your mouth to your gut and possibly further. We escaped the worst of this with his first treatment, but got it bad now. The frustrating thing is that Ben hasn't lost his appetite - it's simply too painful to swallow even his own saliva. So his meals are now Pediasure Plus four times daily, as well as 12 hours continuous at a slow rate overnight to ensure he maintains his caloric intake. We were on a morphine pump, but that was removed today. And although Ben refuses to allow anybody to suction his mouth, he is quite adept at doing it himself. The feeding tube has an added bonus as it makes it possible for Benjamin to take his oral meds, but it is not without problems. There is always the risk that Ben pulls it out or throws it up, both of which happened on Sunday. While normally it is a simple procedure to insert a feeding tube, the worse the mucositis is, the more painful it is to insert the feeding tube.

Other than that, however, Benjamin has weathered his first week post-transplant remarkably well. Friday was his lowest point, and except for some up-chucking on Sunday with the tube, he's done great. As expected Ben has required several transfusions of blood and platelets. But his energy levels are just going up and up. I don't know what they are giving him, but I want some! I even called the doctor on it yesterday. He promised us fatigue and instead we get a Tasmanian devil attached to a Christmas tree IV pole with up to 6 separate lines and a feeding tube. You control that! You can see a bit of the X-mas tree behind Ben in the 2nd picture. He hasn't been this connected since his ICU days (exactly one year ago, by the way). And every pump on the tree except the one for his feeding tube has a line running into his Broviac. Which is a story unto itself.

Faithful readers might recall the problems we had with Broviac #2, which culminated in an emergency New Year's Eve trip to the operating room. Well this one, Broviac #4, is starting down the same path of destruction. The outer lining of the tubing has once again disconnected from the casing covering the split of the two lumens. A call has already been put in for the surgeons to come in and make an assessment. Since Benjamin is still awaiting engraftment of the donor stem cells and is very open to any infections (he's even given himself E coli), much greater care must be taken with the decisions made on #4 than the brush-offs we got with #2. Last time the issue was pushed aside for 2 months until there was no choice anymore. We'll see what happens this time. Maybe I should contact the manufacturer directly and ask them what they suggest for a recurring problem with one of their products: PRODUCT RECALL!

Anyways, time to change Ben's diaper, make up my bed, and get some shut-eye. After all, Ben doesn't care a hoot how much sleep I've gotten when he's up and ready to go at 6:30 AM.

The Bubble Boy Cometh, or the Sweet Smell of Success

Benjamin reeks. He is at this very moment exuding from his every pore an odor which I can only describe as a sickly sweet mix between rotting orange peels and formaldehyde. This is a common byproduct of stem cell transplant and comes from the preservatives which were used to store the cord blood. Apparently it is worse in bone marrow transplants because more preservatives are needed. But it will dissipate in 24 hours. Yes, faithful readers, the deed is done. At 11:44 this morning the stem cells were pushed into Benjamin's blood stream (that's them in the jumbo syringe in the picture). The entire process took all of 8 minutes, and by 12:15, as Roger and I were getting Ben ready for his nap, I was already wrinkling my nose in confusion. So far so good, as Ben is doing really well.

It will take 2-3 weeks for the stem cells to take. In that time Ben will be getting regular transfusions and shots of G-CSF, which stimulates the production of neutrophils, and he is supposed to start showing signs of fatigue. That hasn't happened yet - in fact Monday night he was up until 3AM! I gave up trying to deal with him at 12:30 and went to go sleep on the leather love seat in the parent's lounge - very comfortable! During the day, we have to spend most of the time chasing Ben with his IV pole as he travels around the room. The worst was this past weekend, because not was he trailing several IV lines, but he also had a catheter inserted Friday evening. And the line from diaper to collection bag is a lot shorter than his IV lines, and a lot less forgiving. Imagine running past the end of the leash when the leash isn't around your neck but stuck up your ... you get the picture.

Other than the catheter the conditioning process went well. We arrived at the hospital on July 2nd, and Benjamin officially became a bubble boy. He was not allowed out of his room except for the radiation trips and his daily bath, carefully timed for when housekeeping comes to clean his room. Only 5 people other than staff are authorized to enter his room, and only under strict sanitary conditions. He and Emily can now bang on the window separating them (which they do with great glee). The major incident during Ben's radiation treatments involved technical difficulties with a sticky stretcher outside the Montreal General. Luckily we were able to quickly commandeer an Urgences Sante ambulance to take us back down the hill. But otherwise, I got a couple of hours a day to work on the communal jig-saw puzzles set up in the radiation waiting room. In fact I developed a reputation with the regulars for having a very good eye for matching pieces. I was disappointed on the last day because I left after the morning treatment with only about 50 pieces to go, and by the time I returned 6 hours later the puzzle I had been working on the whole time was finished. Oh well, I started a new one for them.

I guess other than the transplant, the other "big" news is my hair. Yes, it's gone. Actually it's in a zip-lock bag in the mail. Some of you might know that I've been growing it out to donate it to Locks of Love, an organization which makes wigs for disadvantaged children with permanent "bad hair days". It's the 2nd time I've done it and it takes about 2 years for me to grow it long enough, but the timing was absolutely perfect, and I love it. It might not seem like much, but my hairdresser told me that each head of hair donated can make up to 3 wigs, and if you're cutting it anyways... For anyone interested I've added the link to the others already listed.

Two Parties and The Talk

June has just been packed! This has been the first time in the last couple of weeks that I've actually had the energy to want to blog. One of the reasons is that we are suddenly the parents of two children again. Last Thursday, as I was on my way home from work, my cell phone rang. It was the 8D receptionist advising me that Benjamin was ready to be discharged! Well! Since we were meeting Ben's primary doctor Friday morning for "The Talk" (more on that later), we asked that we only be discharged Friday. That bought us enough time to tidy the house and start emptying Ben's hospital room of the flotsam and jetsam which invariably accumulates over a 4 week stay. But all this to say that Ben has been home since last Friday, and will be readmitted to the hospital on July 2nd, when his "conditioning" starts. We are restricted in what we can do at home however. Even Emily has had to be isolated to a certain extent, and missed her first week of swimming lessons, to avoid bringing home any unwanted "guests".

We were able to get in a birthday party for her this past Saturday. We shipped Benjamin off to Nonna's house for the duration and welcomed 12 children and their families into our backyard. We set up the "big" pool, barbecued, and had a Disney Princess piñata. Emily had a blast, and she deserved it since last year her birthday celebrations were also curtailed by Benjamin's (then unknown) medical condition. We weren't going to let that happen two years in a row.

The week before (Father's Day weekend) we were in Ottawa for my brother's wedding to his long-time girlfriend. Emily took her role of flower girl very seriously - until about 1/2 way through the ceremony. But it was a beautiful weekend, and even though Benjamin wasn't with us, it was still nice to get away and take part in such a happy occasion. The bonus was that instead of a traditional reception they decided to treat their nearest and dearest to a night at the Chateau Montebello, including a swank dinner in the fabulous dining room. Since dinner was late and Emily had already partied hard the night before at the party after the rehearsal, we arranged through the hotel for a babysitter to stay with Emily after we put her to bed. This allowed Roger and I to relax and enjoy the evening.

.

"Yeah, yeah", you're all saying, "get on with it. What's up with Benjamin?" On Friday we had a two hour meeting with the doctor in which he spent the first minute expressing his optimism about the upcoming procedure, and then the next 119 minutes detailing the actual procedure and everything that could possibly go wrong with it, both short-term and long. Even knowing what we were getting into, I walked out of there shell-shocked and discouraged. It didn't help that after all this talk of potential relapse even after the transplant, one of the new patients on the floor was actually an old one. A boy who had undergone a bone marrow transplant this time last year (and who we know well), was admitted with fever and an infection, and wonky blood counts. As far as we now know everything is fine, but it was still a shock to see him on the floor again, a confirmation of future uncertainty.

.

The procedure starts with conditioning, which is a countdown to transplant day. On July 2nd (T -7) we are admitted and immediately start total body irradiation (TBI) twice a day for three days. On day T -4, Ben starts 3 days of chemo. On T -3, he also starts three days of antithymocyte globulin (ATG) to help with the suppression of his immune system. And on T -0 (July 9th), Ben gets stem cells pushed in by IV over about 10 minutes and it's done - except for the fun part! All we know about the donor cord is that it is from a girl in the southern US who was born on Oct. 30, 2002. Her blood type is B positive, which means that Benjamin's blood type will change from A pos to B pos. And Ben might grow up to really like shopping. No biggie - long term effects of all the radiation and chemo include almost certain sterility and possible stunted physical and mental development.

.

So on that note, we will enjoy this last weekend as a family together before the transplant, even in our semi-isolation. We will probably also have a family gathering to celebrate Ben's birthday in advance, since he will be behind glass when he turns two later in July. And if I don't post before we go in, Happy Canada Day everybody!

Gamma Rays Kill Hair

Let me start with some fantabulous news: we have several excellent cord blood matches for Benjamin! So that means that now we just have to wait for his counts to come back up to determine technical remission (i.e. blast cells under 5%). When the doctors know that the cancer is in check (hopefully in the next couple of weeks), the transplant process will start. That will involve visits around the hospital so that each specialist can sign off on Ben's overall good health, before a last blast of chemo followed by full body radiation to completely eradicate Ben's immune system. This is the point of no return, because at this point he will be completely defenceless until the transplant of the new immune system through the stem cells from the cord blood. And Benjamin will be living in almost total isolation, with only a handful of people allowed in his room ever - a classic case of bubble boy looking at the world through the window of his fish bowl.

But that's jumping the gun. On Wednesday afternoon last week we went back up to the General for "mapping", since it had been decided that some radiation specifically on the brain would be required before the transplant process. Basically Benjamin was knocked out (again!) so that they could do a CT scan to see exactly where to aim the radiation and a mask was made to hold his head in place during the planned radiation, with target marks on it. (Makes you wonder what they did during the emergency radiation.) This mask makes it look like all Benjamin is missing is his chainsaw - I'll see if I can get a picture of it.

Radiation therapy proper started Tuesday morning. Every morning at 7:30, Benjamin gets strapped to a stretcher and driven up the hill with a team of 4 people and either me or Roger. We know that this is just part of our routine, and there is nothing urgent or immediately life-threatening about it. But the sight of our little procession is quite startling to many people. After all, what would your reaction be to seeing a small child on a stretcher being wheeled through an adult hospital followed by people in scrubs. "How bad is it that he can't go to the Children's?" Benjamin loves the ride and is already calling out "Car? Car?" as he's being wheeled through the halls. Unfortunately, he's only awake for the ride up. But once we're there, and while we're waiting for the doctor to arrive, Ben starts flirting with the technicians. After only two treatments they are all already in love with him. And when he wakes up in recovery he's ready to go. Yesterday he tried to climb out of his bed and walk within five minutes of coming out from under. We hope that Ben will only need one week of radiation, and they are planning another MRI next week to see how things have progressed and a decision will be made then.

One very real side effect of the radiation is hair loss. In fact it looks like Benjamin has a receding hairline due to the radiation being concentrated there. I'm not ready to lose his beautiful hair again, and since the chemo didn't seem to be doing anything, I was hopeful that we would keep it. Instead I'm bringing in the trimmer again, even though I'm in denial. I guess that even though I accept the situation we're in, I just don't like the tangible proof. Last Thursday I decided to return the outfit and shoes I had bought (ironically on the same day that Ben's seizures started) for Ben to wear at my brother's wedding. I had been putting it off because of the finality of that gesture. By returning the stuff I was giving in to the reality that Benjamin would not be able to take part in this special day. But there's still a teeny part of me harboring the hope that a miracle will happen in the next week and his counts will come up high enough to get a day pass to at least make the ceremony. (Reality check - the doctors would never allow us to take him to Ottawa!) Just as well - he'd probably be completely uncontrollable and cause a scene. At least in his hospital room we can contain him - somewhat.

Details, Details!

I think that I can honestly say that the last post was the most difficult one I've ever had to write. And not because of the situation itself, but because of a completely irrational feeling that we've disappointed people. I can hear you all screaming that I'm being an idiot, but a part of me can't help thinking that with all this massive support we've had behind us since day one, we should have done better. And we've already taken everybody on this emotional roller coaster of cancer; it's not fair to ask it of you again.

In earlier posts I wrote of the fear of relapse and how other families were dealing with it, and how I had no idea how I would handle it if it came to that. Well now I know - but I still don't really. We were so sure that Benjamin was finally out of the woods that we were planning camping and road trips for the summer. Benjamin was finally going to get his much-longed-for pool time (boy, did he love that in Florida), and many bike rides sitting high behind Daddy (another new and exciting experience). But as soon as he collapsed on the grass in our backyard, I knew there was something very wrong, bigger than just a seizure. That night as I waited for Roger to call with news from the hospital I cried, probably more in those hours than in the entire length of the previous treatment.

But life goes on, and the next day was Emily's special day at preschool. So, once again I switched to coping mode (the new default in my automatic pilot), and tried to ensure that Emily still had fun. And that's where we are right now. We're still trying to come up with a routine which will not disrupt Emily's life more than it already has. The difficulty is in getting her to understand why Benjamin can't come home again, and why we can't always be there for her. I feel so sorry for her, because she certainly doesn't deserve this. She's such a trouper, but even troupers have their limits. If I could clone myself to be in two places at once, I'd do it in a heartbeat. (Emily, if you're reading this years from now: we're sorry, it wasn't your fault or any body's & we did the best we could.) And it's only going to get worse. Once Benjamin is in transplant, the siblings will only be able to communicate through a window and phone (just like in a jail). Besides staff, only Roger and I, and one or two designated alternates will be allowed into his room.

Which bring me to the initial point of this post: details. Benjamin has already finished his chemotherapy, and his counts have already dropped. When they go back up to normal or near-normal levels (in about 2-3 weeks), the doctors will re-assess the level of remaining cancer through another bone marrow aspirate. In this time, Benjamin's HLA typing should have been completed and a search will have started through the registries to find a compatible donor. The doctors are confident that a match will be found either through the cord blood bank or the donor registry, so I'm not putting out a call to arms yet. But for anyone interested, I've posted a link to the Hema-Quebec website at left; they go into much more detail about the actual process. A decision will also have to be made with regards to the rind on Benjamin's brain if the chemo has not removed it. Radiation therapy is a part of the preparation for stem cell transplant, but some extra radiation might be required. In fact, if everything goes well from here on in and a match is found quickly, we could be in the transplant process within the next month. Here's hoping.

But in the mean time, tonight I've got to make lunches, pay bills, do the recycling, and get some sleep. In three weeks, within three days of each other, we have my brother's wedding in Ottawa, Father's Day and Emily's birthday, all of which require some sort of attention. At this rate I'll be dealing with my emotions on Ben's relapse in 2012. Life most certainly goes on.

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.

.

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.

.

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.

.

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.

.

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".

.

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.