Angel Day

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

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

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

The Week That Was

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

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

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

Luck of the Draw

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

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

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

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

Into The Woods

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

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

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

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

If We Took a Holiday...

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

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

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

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

I'm Ready to Go Home Now

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

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

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

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