The Days Are Just Packed

It's funny how exhausted I am when you consider how I spend my days. I mean, when I'm at the hospital I spend all Benjamin's awake time trying to keep him stimulated, entertained and happy while simultaneously confining him to his crib or a 4'x4' foam mat on the floor. Should be a piece of cake, no? No.

As you can see, except for the feeding tube Benjamin does not look sick - and that came out this morning. He's eating real food again, although we're still working on the bottles of formula. His blood counts are already coming up again, and he stopped shedding. The chemo seems to have left his system. Which means that Benjamin is an essentially healthy boy (he's still very susceptible to infections) who's getting healthier by the day - and thus harder to control. I can't wait until they tell me that we can leave the room, even if it's just to go down the hall to the playroom. Hopefully that day will be very soon. At least when we're allowed out of his room, I can put him in the stroller and interact with some of the other "inmates". There are at least 3 other moms that I recognize from our last visit in June. Some families, like us, went home for a while and came back. Others haven't left yet. And we're all waiting, but we make the best of it. One older patient made cupcakes for everyone in the ward yesterday (Benjamin loved his). Once a week there's free cookies and coffee. And the parents with babies or toddlers in isolation (there's at least 3 of us) sneak out of their rooms when they can to gossip, check e-mail, eat, shower, do laundry, etc. while the children nap.

See, this forced isolation of Benjamin also becomes a forced isolation of his keeper. When he's awake we can't just leave him for 30 minutes to eat or take a shower. And eating in front of him is torture for both of us, because no matter what I'm eating and how wildly inappropriate it is for a baby's system, he wants some. (Have I mentioned Benjamin got his voice back?) I've started hoping that he naps around lunch and dinner, just so I can eat at somewhat normal times. And if I thought showers were a luxury before....

But that's all just whining and griping. The important thing is that Benjamin is getting better. And the faster he gets better, the faster they can start the next round of chemo, and we'll be that much closer to putting this all behind us. Now if I could just teach him how to use the PlayStation....

At Home in 8D

Well, we're out of the ICU and in 8D. They've had to temporarily put us in one of the bone marrow transplant (ie. bubble boy) rooms, but I'm not complaining because they are much bigger than a normal room.

To catch everybody up, Benjamin was taken off the ventilator on July 21st. By his birthday 2 days later he was off the sedatives enough that he was at least trying to play with the boxes and ribbons with which his toys came. As the weaning progressed, the "Christmas tree" of pumps and wires was cut back until, on his last day in the ICU, he only had 1 IV in his central line and the feeding tube. Benjamin was moved to 8D on July 25th, where he continues to progress with leaps and bounds. He is no longer on continuous feed, but is being given "meals" through his feeding tube every 4 hours. He can now sit up normally and has started rolling over again. He still can't quite push himself up to sitting, but that will come in short order. As Benjamin's strength and energy return so too does his smile. As you can see in the picture, he loves sitting on the window sill watching the traffic going up and down the mountain on Atwater. He is also enjoying all his birthday gifts and is babbling again, now that his voice is back. The doctor even said today that the nurses all want to be assigned to him.

Before I paint too rosy a picture, let me just say that we take these small pleasures where we can, because we know that this is temporary. Benjamin has started losing his beautiful soft baby hair. It is falling out not in clumps like I expected, but as an ongoing heavy shedding. Also, the chemo has reduces his appetite and altered his taste buds, giving everything a metallic taste (so the nurses and doctors say) so Benjamin has shown no interest in the bottle or in food (thus the feeding tube). He also gets periodically cranky, fussy and inconsolable, due to either the chemo or withdrawal. Finally, we know that the good days are numbered, since he'll hit rock bottom again with each of the next rounds. We are literally on a roller coaster, and right now we're slowly clickety-clacking our way to the highest point, knowing that soon we'll be barrelling down at break-neck speed, screaming all the way, clinging to the safety bar for dear life, with no way off until the very end.

"With no way off until the very end". Roger and I never even questioned what our "duties" as parents were when we found out how sick Benjamin was. The big question was (and will continue to be) how to keep Emily's life as normal as possible while we drop everything to take care of Benjamin. Sadly, we've learned that not all parents share this view. While in the ICU, Benjamin was in an isolated room with a window looking into the rest of the ICU. In a bed immediately under this window was a tiny but adorable 4 month old boy named Mark. He too was on a ventilator, and while he got plenty of attention from the medical staff, we never saw any family. Finally, one day seeing a hospital volunteer in her red apron sitting next to his bed, I asked a nurse about it. The poor wee baby had been abandoned here by his parents. Upon recovery and discharge he will go to a foster home. Roger also found out from Benjamin's night nurse that there is a girl Benjamin's age currently being treated for cancer in 8D who has also been abandoned - and that she's not the first and won't be the last. How anybody could even think to do such a thing is completely beyond me. I mean, these are innocent and helpless infants, not furniture to be discarded on moving day. And it's not like you have to pay for treatment here. Honestly, this kind of behaviour is just sickening. Mind you, I'd be willing to bet that little Mark's respiratory problems stem from his parents' alcohol and/or drug use. UGH! Still, I'm trying to figure out how I can help them while I take care of our own sick little guy. If anyone has any ideas, I'm open to suggestions.

BTW, blogging from the hospital will be difficult, since a computer virus made them tighten access to outside websites. I'll have to e-mail posts to Roger so that he can copy and paste them into the blog, but I'll only see any comments when I use an outside computer.

These Arms of Mine

"These arms of mine, they are lonely, lonely and feeling blue.

These arms of mine, they are yearning...."

You get the idea. Fans of oldies (or the movie "Dirty Dancing") will recognise this Otis Redding classic. And that pretty much summed up how I felt, since I last held my baby on July 9th. Today, 12 days later, I finally got to hold Benjamin again. What a wonderful feeling to snuggle with him in a rocking chair supplied by the nurses, cradling his smooth head (no lumps!) and stroking his soft hair (it's not falling out yet) as he falls asleep.

Some of you might have already made the leap of logic that if I can hold Benjamin, he's no longer on the ventilator. He was extubated today, July 21st, around 11AM. See, the nurses started weaning Ben from his drugs yesterday, and so he is more active if not fully awake and aware. So the decision was made today to take out the tube before he ripped it out himself. He was a little wheezy at first and coughing up secretions, but he's much better already. He has no voice right now as his vocal cords are still stretched out of shape, but I've been assured that that will correct itself shortly. His cries are just mewling gasps and he was crying, either because he has a sore throat (ya think?), or from chemo side effects, or gas, or withdrawal. Lord knows Benjamin has any number of completely valid and justifiable reasons to cry.

At 3:30, after several hours of restlessness Benjamin finally fell asleep. And that's where we stand right now. He'll probably still get a tube for feedings if he doesn't take the bottle. But it looks like there's a very real chance that he'll be back in 8D for his birthday on Monday. So Mommy's decided to take these last nights at home easy, since when Benjamin goes to 8D, so does Mommy. I have to say that I feel like I got spoiled with Benjamin sedated and well taken care of by the wonderful nurses of the ICU. I actually got to sleep 6-8 hours a night uninterrupted in my own bed - something that hasn't happened since Benjamin was born. But the trade-off for these nights of sleep isn't worth it. There is no question that I'd rather be holding Benjamin in my arms at 3AM than being asleep at home while he's intubated and sedated in the ICU. And that brings this post full circle. Hopefully my next post will be from the computer in the playroom at 8D. As soon as we're settled we'll let everybody know.

Tubes

So Benjamin is intubated, sedated and undergoing chemo. He's being fed a combination of breast milk and formula through a feeding tube at a rate of 25 ml/hr. The lumps on his head and behind his eyes have disappeared. The puffiness (from liquid retention) is all gone, and he's back to his normal weight. Two of the 6 IV lines he had have been pulled. He's now down to the double port central line (remember the one that was removed on June 22nd - they had to re-insert a new one!) for chemo and a double port in his groin area. On paper everything sounds great. But go back and read the 5th word of this post. I could easily have replaced that word with "simultaneously fighting sedation with all his might and developing an addiction to the drugs being used to sedate him", but that would have made for a run-on sentence. However, it is a much more accurate picture of what's going on.

When Benjamin was intubated, his windpipe was so swollen that all they could fit was a size 3 tube. This is the 2nd smallest tube available, both in diameter and in length. In fact it is so small that it is usually only used on preemies. Now we all know that Benjamin is slightly larger than your average preemie. Because of that, he's had to be kept as quiet as possible so as to not dislodge or pull out this very fragile lifeline. In the 11 days that he's been intubated, the ICU nurses have had the unenviable job of keeping him quiet but not paralysed, a delicate balance. And as Benjamin's developed tolerances to the drugs given, this job has become harder. So, because of this and other medical considerations (it seemed that the swelling wasn't going down as expected), the doctors decided it would be best for Benjamin to receive a tracheostomy. At least that way, he would be awake - but breathing through a hole in his throat.

Benjamin was put on the emergency list for the operating room on July 19th and we waited, and waited, and waited. Finally, we received word that there was an opening around 8PM. So off goes Benjamin to the OR for the 5th time in his short life (the assistant anaesthetist has now seen Ben 3 times).

Meanwhile, I should explain leakage. Normally leaks are bad things (in your water pipes, tires, and inflatable pool toys). But when you are on a ventilator you want a leak to develop because that means that there is starting to be room in between the tube and the walls of the windpipe. We've been listening and watching for Benjamin to develop a leak since he was intubated, and there was never anything significant or permanent. But it's as if the little guy knows what we've planned for him. As soon as the doctors told us he needed the tracheostomy, Ben started to finally develop a leak.

So, at the end of the day, Benjamin did not get the tracheostomy. The doctor said that his windpipe was actually less swollen now than it was when he was admitted. They did do a bronchoscopy and a biopsy of the growth which is still protruding a little bit. They also put in a one size larger tube, which should be coming out in the next couple of days. The problem now is that our little fighter has to be slowly weaned from his sedation drugs otherwise he'll go into full withdrawal. I'm telling you - if it's not one thing then it's another.

Mother's Intuition, or How It All Started

Hi all, and welcome to Ben's blog. Many of you know how this all started, so you can scroll down a couple of pages, but for the rest of you let's play catch up.


In mid-May Benjamin just started to act "off" - less energy, less active, a lingering cough, general whininess. I took him to the clinic, but we didn't really have anything to work with, even though the doctor wasn't discounting my feelings. So we went home with a plan to treat him for constipation (I never got around to that - he pooed 5 times that day) and put oil in his ears to loosen up the ear wax.


The next Sunday, Benjamin's cough got worse so we brought him back to the clinic. With no fever present, the doctor said that it was just bronchitis and that the cough could linger. Of course that night Benjamin developed a fever. On the Tuesday, we were back at the clinic since the fever hadn't abated yet. But he was responding well so we weren't worried. Wednesday afternoon, he did not respond to the fever meds and was completely non-responsive, even in his favorite place in the world, the bath tub. So off I raced to the ER of the Montreal Children's Hospital, after a phone chat with a CLSC nurse. X-rays led to a diagnosis of pneumonia and a prescription for antibiotics. These worked until Sunday June 3, when Benjamin woke up with fever and bloody discharge from his ear and nose.


Back in the ER, the Dr. wanted to IV some antibiotics, but they had a very difficult time finding a vein that wouldn't "blow". 5 pricks and much crying later, it was in and blood was also sent for tests. The results of the tests were suggestive of leukemia, with very low platelets and red & white blood cells. This led to Benjamin being admitted into 8D (Hematology / Oncology). Long story short: in the 6 days we were there the possible diagnosis travelled from ALL leukemia to aplastic anemia to myelodisplacia (spelling?) to a viral bone marrow suppression. In the end we were released to the cleanliness of the Skira's house (as our kitchen was being renovated), with Benjamin's only physical reminders of the ordeal being a Broviac central line sticking out of his chest just above his right nipple and an unexplained lump the size of a raisin on his head.


Weekly checkups confirmed what we were seeing: that Benjamin was well on his way to being a normal, very active little boy. And on June 22nd, the central line was removed. A week later Dr. David Mitchell, Ben's hematologist, gave him a clean bill of health.


That same afternoon, we noticed Benjamin was favoring his left arm, not putting any weight on it at all. So, Saturday we're back in ER for X-rays and eventually a cast from the palm to just below his shoulder. Yay! During the following week Benjamin caught a back cold and started cutting 4 teeth. So, surprise, surprise, Thursday evening he started a fever. We saw Dr. Katz on Friday, and he asked to see Ben again on Saturday, as he had some concerns about Ben's swelling left eye and the nasty cough. On Saturday, Dr. Katz sent us to our home away from home, the ER, for more chest X-rays. Once there Ben was treated for croup with an epi mask and an oral dose of steroids (insert roid-rage jokes here), and after 4 hours of observation was sent home.


Sunday, July 8th, Benjamin had a good morning, but woke up from a long nap wheezing. Off we went to the ER in what is by now an all to familiar routine. Ben was given the same meds as the previous day, but did not respond as well. His throat was scoped by an ear, nose and throat specialist (ENT) who saw a 50% blockage of the windpipe. Ben was admitted to 6C-2 for observation.

Monday saw Benjamin's breathing becoming more and more labored no matter what treatment was given. Another scope saw the windpipe 75% shut. At this point it was decided that Benjamin would be intubated and put on a ventilator in the ICU. This sounds scary, but we were just happy to have him sedated and breathing easy on a machine as opposed to watching him exhaust himself desperately trying to breathe on his own.

Tuesday and Wednesday brought a parade of specialists and their diagnostic tools. Remember the lump on Ben's head? There were now many lumps and his eye was swelling more and more. And his liver and spleen were both enlarged. He was seen by the hematologist, the oncologist, the cardiologist, the immunologist, gastrointerologist, the ENT and the infectious diseases doctor. He has ultrasounds of his heart and abdominal cavity, a CT-scan of his head, throat and chest, countless X-rays, blood work, and another bone marrow aspiration & biopsy. This last proved to be the kicker. The hematologist, Dr. Mitchell was this time able to diagnose with complete certainty AML, a form of leukemia. The CT-scan confirmed that the swelling behind his eyes as well as the lumps on his head were all tumors caused by the AML. In fact, the windpipe swelling and the "broken" arm (which they now say was never broken) are probably also due to growths from the AML.

In any case, within 5 hours of diagnosis, Benjamin had already started his first round on chemo treatments. He's been responding great. The lumps are gone and the swelling behind his eyes is significantly reduced. He's still intubated, but we hope to get him off the ventilator (and out of the ICU) for his birthday. We'll continue to post updates (and pictures) as they come.