Three Unbelievable Years ...

February 22 2011 marks three years since we took Harry to the hospital. Three unbelievable years.

I wrote this story two years ago. But it is another one that I couldn't quite post. Here it is now.

Getting Sick In February

A year ago Henry went to India on February 4th, the day Harry turned 10 months old. That week Harry started displaying the first really overt signs that he was not well. Here is how I recorded the unfolding two weeks on Harry’s Baby Calendar.

Thursday February 7th, 2008 -  “Ugh, back to waking up two times at night. Started Friday to Sunday nights so far.”
Friday February 8th, 2008 - “Harry allergic to soy? Had tofu (first time) at lunch & really threw up at nap time.”
Saturday February 9th, 2008 - “Really missing Daddy? Does not want to be out of my sight. Cries if I leave for a second, wants to be held most of the time.”
Sunday February 10th, 2008 - “Threw up at lunch again. Sick? Seems very sad - missing Daddy or sick.”
Monday February 11th, 2008 - “Strange, Harry wouldn’t nurse at both naps. He nursed a very little then fell asleep in my arms.”
Tuesday February 12th, 2008 - “Harry very off” “Car accident, rear-ended at stop sign at Arlington Street.”
Wednesday February 13th, 2008 - “Kindermusik teacher noticed he is not his usual self. Vomited again at lunch, sweet corn casserole.”
Friday February 15th, 2008 - “Vomited at bedtime.”
Saturday February 16th, 2008 - “Vomited yoghurt.”
Sunday February 17th, 2008 - “Harry is really out of sorts. Not at all himself, cries / fusses all the time.”
Monday February 18th, 2008 - “Wants to be held all day by Mummy. Won’t play with toys. Rarely crawls or ... “ (con’t on 19th)
Tuesday February 19th, 2008 - ”... to walk. Doesn’t smile or laugh (or very rarely). Waking up crying hard ...” (con’t on 20th)
Wednesday February 20th, 2008 - “... multiple times in the night. Wakes up crying in the morning, exhausted at nap-time. Not eating well.”
Thursday February 21st, 2008 - “A very different baby. Something is wrong.”

And the last entry I made on his calendar, the day we took him to our family doctor’s, the day we went to the ER. Friday February 22, 2008,

“18-19lbs, 29-30” He has lots 2 pounds since January?”

I take some small comfort in his baby calendar. I struggle with a huge amount of guilt over the fact that I did not notice he was sick earlier. That nasty voice in my head tells me, “You are a horrible mother, the worst mother in the world, what kind of mother does not notice her son is slowly dying of cancer?” Noticing earlier may have made all the difference in the world. But I also have to always remind myself, or it might have made no difference whatsoever.

As Mona, our interior designer gently and wisely pointed out when I first met with her and told her a bit about our story, “Finding the cancer earlier may just have meant he would have been a sick baby sooner. This way, you had him as a ‘well and normal’ baby for as long as possible”. I am pretty sure I hired her solely based on that wonderful observation. I hope she is as good an interior designer as she is at knowing just what to say in a tender moment!

But I will always wonder. What if we had caught the cancer sooner? What if I had been more observant? What if I hadn’t been so bloody focused on defending my doctoral thesis? Would I have noticed in November or December that he was unwell.

But, I can with a small measure of comfort look back at his calendar in November and December. I recorded an observation nearly every day. Nothing startling or really out of the ordinary stands out. The only sign that there was perhaps something amiss was that in early December he started to refuse to eat his baby food. But it wasn’t that he didn’t want to eat at all. Rather, he wanted to eat what we were eating, especially what his big sister was eating.

For example, I had recorded, when Harry was just eight months old, over December 6-8th 2007, “Starting to refuse baby food - wants to eat what we eat. Especially loves mandarin oranges, apples, bananas, carrots to chew on. But can’t really chew or swallow great yet, a difficult time ...”.

And on the 9th, “Have to check when Lydia started finger foods, toast with liverwurst sandwiches.”

And I did check Lydia’s baby calendar. Here is what I wrote on August 4th-5th, just a few days after Lydia turned eight months old, “Lydia is getting to be a fussy eater. She does better when she has a spoon to hold, but often fights going into her chair. She doesn’t like much fruit, really only bananas. She seems to want more chunky food - what we’re having - but can’t chew it yet. So she gets frustrated.” I gave her liverwurst toast for the first time on August 11th.

So, coincidently, on December 11th, I gave Harry liverwurst toast for lunch for the first time and he ate it happily, despite only having two teeth at the time. The next day, December 12th, he really crawled forward for the first time.

Had I taken him to the doctors and complained, “He just doesn’t seem to be a great eater, he is a bit fussy sometimes” would that have made any difference? I imagine I would have been sent home with a comforting pat on the back, because, although the cancer had likely started growing in his liver at that time, I doubt the tumor would have been large enough yet to feel it.

Or maybe not. The three documented children that have survived from a diagnosis of a primary rhabdoid liver tumor were all diagnosed early, at a stage 2 or 3, before the cancer had metastasized. So catching this cancer early, any cancer really, is paramount to survival. This is something I have to figure out how to learn to live with.

We did not catch Harry’s cancer early.

When Harry first threw up on Friday February 8th, I figured he either had the flu or he was allergic to soy. We had visited with friends the previous weekend, and both their girls had just got over a wicked stomach bug that had them in bed for half of January. So I wondered if Harry just had contracted that bug. Alternatively, he had thrown up quite soon after eating the soy, and quite aggressively, which he had never done before. So I wondered if he was allergic to soy.

This was also the first time that Henry had taken a long business trip since Harry was born. As Harry was just at the age where separation anxiety can set in, I also was not sure how much of his crying and clinginess could be attributed to missing his Daddy. So that whole week from the 10th to the 16th, I was concerned, but just not sure what to think. Harry had never been sick before, and it was February in Winnipeg, so it was completely within the realm of possibility that he simply had a nasty case of the flu.

But I do remember that last Kindermusik class very clearly. We were in a class with several other children very close in age to Harry. One darling little boy was just about 8-10 weeks older than Harry. I remember suddenly being struck, at that class, just how healthy, strong and active he seemed compared to Harry. He was standing and nearly walking on his own. Harry looked so small and fragile, somehow, compared to him. And yet, there were two other little ones, a sweet, dainty little girl Rachel, born on April 1st and smiling Stephen born on either April 2nd or 3rd, neither of whom were walking on their own yet and both of whom were smaller like Harry. I just figured, “Sure, just Harry’s luck, with a Dad who is 6’3”, the only thing he’ll inherit from my family is *my* Dad’s short stature (he was 5’6” on tip-toes)!”

On Valentine’s Day, however, I became convinced there was something wrong. Toni, the mother of one of Lydia’s best friends at school, noticed it too. Lydia, Harry and I had made and iced a batch of heart-shaped sugar cookies to give out to her class. Harry and I came to class to deliver them. I realized when we arrived to the classroom that it would be best to wrap the cookies individually and place them in each child’s Valentine’s bag. So I handed Harry over to Toni, who was also staying for the morning, grabbed my coat and wallet, and ran across the street to the Kit Kat store to pick up some sandwich baggies. When I returned, Harry was in tears and beside himself with missing me. This was very odd, because he adored Toni and always reached to cuddle in her arms every morning when we dropped the girls off at school.

He had also had a massive and very smelly poop, which Toni had changed in the washroom, and which was unusual as well.

I quickly started depositing cookies in sandwich bags in Valentines’ bags, but Harry was so upset, Toni suggested I just take him home for his nap and she’d finish up for me.

So Harry and I headed home and he went down for a good long nap.

Later in the day, I took the last pictures of Harry at home before going to the hospital. When I look at those pictures now, I see a mostly healthy, but obviously sick little guy. But he looks like he has a bad case of the flu.

He does not look like a little boy, balancing on the knife-edge between life and death, his body about to be overwhelmed by the rarest and most aggressive childhood cancer known to man.

The last movie I took of Harry before we knew he had cancer, I also took that afternoon. He was wearing a darling red Christmas / Valentines suit and he was walking around the house, pushing his ‘Hippo Car’. He had not missed any developmental milestones. He rolled over early at 3 months, sat on his own at 6, crawled at 9 months and very soon after started furniture cruising, and was very close to walking on his own at 10.5 months. Sure he was a little behind his big sister on these milestones. But Lydia was early at most of her milestones. I swore I would not be the kind of Mum who compared my kids and made one feel bad for not measuring up to the other. He was well within the normal range, in fact on the front edge of normal for physical development, so I was not worried. He was Harry, not Lydia, and he would do things when it was right for him, case closed.

But, I was fighting an increasing sense of panic by Valentine’s Day. I can’t recall if Henry came home from India on the 13th, 14th, or 15th. But I was so relieved to have him back at home. I wanted to see how Harry reacted to his Dad’s presence. I wanted to remove that variable of separation anxiety. He was definitely thrilled to see his Dad. But Henry had to concur. He just did not seem to be himself.

I wanted to take him to the doctor’s office on Saturday February 16th. It had now been a week since he had first vomited his lunch. If it was a flu bug, I would expect some improvement after seven days. But he didn’t seem to be getting better. So I thought it was time to see the doctor. However, as luck would have it, this was the inaugural weekend of the much debated ‘long weekend in February’, (that economists were worried would throw the Manitoba economy into a down-spiral, My God, losing one WHOLE DAY of productivity, how could we handle it???). So Monday was a holiday, “Louis Riel Day” and our doctor’s office, normally open on Saturday mornings, was closed for the long weekend until Tuesday morning.

So we sat tight with Harry. But first thing Tuesday morning I kept Lydia out of school, or maybe she was under the weather too. In any event, I bundled them both up and arrived at our doctor’s office at 9:00 am sharp.

This was on Tuesday February 19th 2008.

The receptionist told me I had a choice, I could wait at least an hour to see our family doctor, or alternatively, I could see one of the other doctor’s in the practice, who was presiding over the walk-in clinic that day, right away. Well, I took one look around the already crowded waiting room, one look at my two kids, one of whom was already sick, the second of whom was questionably sick, but most certainly would get sick if we spent too much time in the germ-infested waiting room, and opted to see the other doctor.

We got into his office right away. I described Harry’s general symptoms to him. I can’t recall how well he examined him. I do remember I had stripped Harry down to his onesy and diaper. But he simply cannot have properly felt his abdomen. He examined both children, re-assured me that he had seen many kids with the flu the past week, and sent me back home.

But the next two nights Harry was up every two hours to nurse and he was crying hard and really difficult to soothe back to sleep. I so clearly remember, in tears, holding him up right, sitting in the rocking chair in his dark room at 3:00 am, looking in his face, those big blue eyes locking with mine, and begging Harry, “Harry, love, tell Mummy what is wrong. I know something is wrong. Tell Mummy what is wrong.”

But he was only 10.5 months, so he couldn’t tell me exactly how he felt.

I just knew in the pit of my stomach something was really wrong with him. I just didn’t know what. I thought perhaps he had autism. I remember sitting in the living room while he napped one morning that week and googling autism to read the early symptoms. The sudden behavior changes, withdrawn, crying, could be early signs. I remember thinking, “Okay, so he has autism, I can handle that, we can work with that, not ideal, but we can manage”.

Thursday afternoon I called our family doctor’s office and made an appointment to see our family doctor at 16:00 the next day.

Friday morning. Friday February 22, 2008. The day I was supposed to be in Guelph, walking across the stage, receiving the doctoral degree I had dedicated eight years of my life to achieving.

Instead, Friday morning. Harry sat limp on my hip in his sling when I dropped Lydia off at school. I talked to Toni. I tried to convey the increasing sense of terror. Toni comforted me and agreed, Harry’s eyes just were not his eyes. He looked vacant and unfocused.

When I went home that morning I weighted myself and then myself and Harry on the bathroom scale. I knew for sure in that moment something was so wrong. I had, without noticing, lost nearly five pounds since Christmas and Harry and I together did not crack 140 lbs. I was somewhere between 117 and 118 lbs, which meant Harry was around 18-19 lbs. Once again, back to his baby calendar, where I had noted he weighted between 19-20 lbs at the beginning of January.

I remember I phoned my sister, Sarah, in France, and told her I was so scared, I was sure there was something wrong with Harry. We had both lost weight. I was sure my body was doing all it could to pump as much into him through the breast milk. I pledged that I would not leave his doctor’s office this afternoon without him ordering blood tests at the very least.

I phoned Henry at work, could he please come with me to the doctor’s office? I didn’t want to be brushed off as an over-reactive mother. I knew something was wrong and I needed him to be there to back me up. Not many people say no to Henry.

It was a sunny and cold February day. I bundled Harry up in his snowsuit and then in the blue stroller bunty bag, reclined him so he would be comfy, and walked to the doctor’s office. A short fifteen minute walk from our house.

I remember pushing him. I can so clearly remember the walk. Just before we reach the doctor’s office we pass a halfway house of sorts. It has apparently been there for decades, a place where young women, “who have gotten themselves in trouble” as it used to be so unkindly put, were sent, especially from the country, to await their baby’s birth. After which, I imagine, they would be hushed back to their small town on the Prairie, their baby left with a family in the city. I remember thinking, well, when Harry is finished with some of his baby things I should put together a nice package and donate it to this centre. I made a mental list of all the things he would soon outgrow, that I might be able to give away.

I arrived with Harry to the doctors office and Henry arrived almost at the same time to meet us. We unbundled Harry from his little blue and red snow suit. He was wearing blue socks, his blue train robeez, navy blue pants and a blue and red ‘Joe-Fresh’ pull over top, with trains on the front I think. Henry held him as we waited for the receptionist to call our name.

In we went to the examination room, sat in the chairs, Henry directly beside the doctor’s desk / computer, me holding Harry now, in the chair next to Henry. I can see Dr. Van Rooyen walk in, greet us, as us what brought us in that day.

“Harry hasn’t been well for two weeks now” I said. “I brought him to see Dr. G on Tuesday and he thought it was just the flu, but I am sure something else is wrong.”

I pulled out a rumpled piece of paper upon which I had enumerated Harry’s various, but rapidly accumulating symptoms and read:

Always the good academic I had given it a title, “Health Issues for Hendrik Venema”

“Since Friday February 8th”
“Vomiting”
lunch Fri. Feb 8th (tofu)
lunch Sun. Feb 10
lunch Wed. Feb 13 (cheese? sweet corn casserole?)
dinner Friday Feb 15 (apple sauce & yoghurt)
lunch Sat. Feb 16 (yoghurt)

“Low grade fever, on and off”
“Runny nose”
“Night waking from 1x’s to 3x’s”
“Not nursing well”
“VERY fussy”
“Super separation anxiety”
“Cannot put down, clingy”
“Cries if I put down & can’t see me”
“Lethargic - puts head on my shoulder a lot”
“Doesn’t want to play, just be held”

“Not eating well”
“Chewing on hand a great deal during meals” - See vomiting above

“Minor car accident Tuesday” “Whiplash???)

“Father away for first time (2 weeks)”

“Virus?”
“Teething”
“Separation anxiety”
“Milk allergy?”
“Other?”

“Dehydration - how much should he be nursing? Can I give him 3% milk now if no milk allergy?”

“Nanny was sick, but he was already sick”

“Chokes & coughs a lot when eating. Dr. G asked about coughing and I said no, but not true when I think about it. He seems to choke and then cough to clear his throat, when I hear him wake up at night he does a big ‘choke/cough’ then wakes up crying hard”.

“Weightloss - 2-3lb? NOT growing, falling off charts”.

I knew something was wrong. I just didn’t know what yet. Henry backed me up and offered that Harry seemed unusually out-of-sorts since he had returned from India.

Dr. Van Rooyen listened carefully then said, “Okay, let’s check him out”. “Mum, can you undress him and we’ll take a look.”

I undressed Harry. I can’t remember if I undressed him right down to his diaper or if I left his onesey on. Henry is pretty sure he had his onesy off.

Dr. Van Rooyen checked his eyes, ears, nose, throat, all looked good.
Then he felt his abdomen. I was standing at the foot of the exam table, Dr. Van Rooyen on Harry’s left side. He tapped his two fingers over Harry’s lower abdomen and said, “Oh Mum, do you hear that, that isn’t right”.

My heart sank to the floor.

He tapped again. The room began to spin.

Its supposed to sound hollow and it didn’t, or maybe it was the other way around. He showed me again. It didn’t really matter. What mattered was what he said next. He said, “You need to get right up to Children’s Hospital and have an ultrasound of his liver”.

What? What? What?

I picked Harry up, disbelief and incomprehension already starting to wash over me.

“Is it serious?”, Henry asked. “What do you think it is?”

No answer.

“I don’t know,” Dr. Van Rooyen said, opening the door to his office that separates his two examination rooms. With his back now turned to us, picking up the phone, he dialed  the emergency desk at Children’s Hospital. Waiting for them to pick up on the other end he repeated, “You need to have an ultrasound of his liver right away”. Then, in hushed tones, he explained to the receptionist on the other end, “I’m sending over a patient of mine right away, Hendrik Venema, H-E-N-D-R-I-K V-E-N-E-M-A, he needs an ultrasound of his liver right away. You’ll be expecting him?”

Henry and I looked at each other and at Harry with a growing sense of panic and disbelief. I had been ready to fight, to insist that we weren’t leaving without a blood test. Never, never, in my wildest dreams, did I expect the Doctor to be sending us up to Children’s Hospital for an ultrasound of Harry’s liver.

“Do we have time to go home?” Henry asked. “We walked here.”

“Our daughter is at a play date” I added, lamely, as if that had some relevance.

“Don’t rush. You have time to get home. Pick up some things. Then go to the hospital”.

There was nothing more to say. Stunned, absolutely stunned, we dressed Harry and left the office.

I remember the walk home. Henry and I felt so confused, anxious, terrified. How could this be? His liver? But he just had the flu.

We phone Toni to find out if Lydia might be able to extend her playdate with Natalie into her first sleep over. We explained that we had to take Harry to the hospital, we were not sure what was wrong. Could Toni keep Lydia for the night? We’d bring her pjs and sleeping things.

We made it home. I packed some diapers for Harry, grabbed his lovie Benjamin the Giraffe, grabbed Lydia’s sleep sack, lovie, pjs and sleep things and we strapped Harry into his car seat.

I don’t remember driving to Children’s Hospital or where we parked. We had never been there before. We couldn’t figure out how to get into the Emergency Room. I think it took us three tries to find the right door, although it is very clearly marked with a very big sign. I remember running in the dark, cold, February night. Trying to find the entrance, we HAVE to get in.

We walked right up to the triage desk.

“We’re here with Hendrik Venema, our Dr. called. Dr. Van Rooyen, to say we’d be coming. Harry needs an ultrasound of his liver.”

The triage nurse took Harry’s information and pointed us to the waiting room filled with snooty, coughing but mostly reasonably healthy looking children.

I held Harry. We tried to sit. I couldn’t sit. I stood, held Harry so close. Fighting to keep calm, not to cry. I looked around the waiting room. Wondered what other people were there for. I wonder what we looked like to them. A mother and father, both of their arms wrapped so protectively around their son. Terror so clearly written across our faces.

Did they know, could they tell, how terribly something was wrong?

I was always so thankful that we had been to our family doctor’s first. We might have waited for hours and hours on end in the Emergency waiting room, had we simply presented as yet another family who thought their child had a bad case of the flu. Instead, we waited for no more than 20 minutes. Our name was called and we were admitted into the Children’s Hospital Emergency, somewhere between 19:00 - 20:00 on Friday, February 22, 2008.

That is when the story-telling started. Again and again, every doctor, nurse, intern, specialist we met over the next 72 hours, always the same opening question, “Tell me what brings you here tonight”.

And so we began to tell our story, over and over. I know why they ask it so many times. With each retelling, a new detail, something new to remember, comes up. A thought that had been folded and put away, pushes back up to the surface, to be plucked out and remembered. Slowly they piece together the story and then they begin their tests, quantitative data to try to unpack, unravel, verify or falsify the qualitative story.