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.

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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.