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.

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"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.

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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.

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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.