A Bean's Life

I’m still in slow recovery mode after a frightening 48-hour period.

It began on Sunday. (Mother’s Day, naturally.) We’d spent the night at Bubby and Da’s house and Gavin slept kind of poorly but woke up bright and cheery. He was fine until about 9:45, then said, I feel weird and wanted to lie down. He had a fever, but not too high, about 38.5. Pretty soon the vomiting began and was pretty consistent until evening. We spent the day pushing fluids only to have almost everything come back up.

When we got home, he perked up a bit and was chatty during his bath, but then had several barfing episodes in the night. We thought it had all cleared up by Monday morning when he requested his breakfast as usual, but a short time later he was lying down again, feverish and dozing in between vomiting sessions which were now taking place every ten minutes.

My dilemma in these situations is that I don’t know if I can chalk Bean’s illness up to a bug, or if shunt/tumour stuff is at play. I opted to take him to our pediatrician first instead of the ER, just to see what she had to say. Bubby came over to help me out and Gavin barfed a couple of more times on the way to the doctor’s office. He was starting to seem fairly listless, and I was getting really worried about hydration, as he had not been able to keep any liquids down that morning. Once Dr. Jain had a good look at him, she recommended that we head to Emerg. as we couldn’t take any chances that this was a shunt issue, and could also run some IV fluids into him.

Back in the car and we high-tailed it to Sick Kids, arriving there at around 11:45. We were fast-tracked into a room because of Gavin’s history and hoped to see a doctor shortly. The whole process then came to a screeching halt. A nurse came to see us and did vitals. A long, long, time later a medical student came in and took the history and did another check.  We didn’t see a doctor until around 4:00, so about four hours of waiting in that room, while Gavin dozed fitfully and was clearly not himself. He was not responding to my questions, but would shake his head or give me a terse nod.

I had already worked myself into a state of panic. Four hours is a long time to sit around and mull the worst. Craig had joined me and Bubby had headed home. The first doctor we saw was one of the ER fellows, and it was her opinion that a shunt series X-ray and also CT scan were definitely called for. She also told me that she couldn’t consider it “just a bug” because of how long it had gone on for and also because diarrhea was not present. This is when I felt everything spiraling out of control. We went to X-ray fairly quickly but were not given the results for several hours. At that point, the nurses had still not started an IV and we were under instructions to keep Gavin NPO. The reasons for this order were a bit fuzzy but I guess the thinking was that we might have to rush him into a shunt revision surgery?

As I simmered in a stew of my own anxiety, the ER fellow and staff doctor returned to inform me that they had consulted our neuro-onc. team, and Dr. Bartels was NOT of the opinion that a CT would be beneficial, and that they agreed to watch and wait. The plan was adjusted to get some fluids into him and then see how he reacted. At that point, it was past 5:00, and Gavin hadn’t actually had any vomiting since about 1:00, so there was a definite improvement there.

Shift-change. Ugh. Anyone who is familiar with hospital life knows that shift-changes in the midst of a crisis are the worst. The next docs and nurses up will directly contradict the orders of the previous shift, and that is exactly what happened. The neuro-surgery fellow came around and felt that a CT scan was absolutely necessary. The new ER staff doctor agreed with her, and the neuro-onc. fellow on call seemed to agree too. Actually, everyone agreed that an MRI would be the best possible solution, but there was no way that we could get Gavin into MRI last night. In the face of all this resolution, how could Craig and I say no? Although we had hoped to spare Beanie the extra radiation from a CT scan, we agreed to do it.

Finally, at around 6:00, we got an IV in – very traumatic for Gavin, and then FINALLY got some fluids running. Over six hours after I’d arrived at hospital with a dehydrated child. By the time we were taken to CT, it was getting on towards 8:00 at night. By that point, Gavin had got his fluids into him and was pretty chatty. He kept saying, I need something to entertain me, and I want to go home, I miss my toys. We tried to keep him distracted with a constant infusion of Treehouse and colouring, but he wasn’t buying it. Gavin has not had a hospital stay since his shunt revision last July. When he goes to MRI, they knock him out before putting an IV in and then take it out as soon has he wakes up, so all of this stuff was pretty freaky and unfamiliar for him. It was all too horribly familiar to us.

We went to CT and proved once again that small children can lie still if you just ask them to. The tech was wowed by Gavin’s three-year-old lying-still prowess. I paced the hall outside while the scan went on and vented to Bubby and Da on the phone. How familiar that stretch of hallway is to me – with its sea-animal motif and bench-radiator that I have curled up on countless times. Last night I huddled under my crappy hospital blanket and prayed with everything in my being.

Once back in the ER, the neuro-surgery fellow quickly looked at the results and let us know that there was absolutely no sign of shunt malfunction. That, and the fact that Gavin was now sitting up in bed saying, I’m starving, when can I have something to eat? was enough for the staff doctor to draw up the discharge papers straightaway and send us on our way.

I cried tears of painful relief and tried to pull myself together after 11 solid hours in the ER, not eating, crying, trembling with sweeping waves of panic and anxiety. We quickly got in the car and Gavin talked the whole way home, as per usual. We put him to bed and he devoured a piece of toast with butter and Marmite. He passed out after that. Craig and I drank a glass of wine on the couch and tried to absorb the insanity of what had just happened.

So, yes, I’m relieved. But I’m also still anxious. Why? Because the doctors planted the seed of doubt. I mean, I was already anxious anyway, but the result of the CT tumour-wise is that they couldn’t really see anything but these scans are not accurate so they won’t say anything with any certainty. Doctors do not like making absolute statements, and certainly not ones that could lead to false hope. Hope, false or not, is all we’ve got. There are a lot of amazing people in our life who blindly and consistently believe that Gavin will never, ever suffer a relapse. These people are wonderful and I love them, because I, Gavin’s mum, have a really hard time truly believing it. It almost seems that the more time passes, the more anxious I get. I have days of crippling panic attacks as I watch him a little too closely and wonder what that weird facial expressions was, or why he’s rubbing his eyes, or why he’s being so bizarre, or why he fell over, or why he’s vomiting. And I’m sure the answer to all those questions is, “He’s 3.” It would be great if our doctors could say to us, “We can’t say this with any medical certainty, but we do personally believe that Gavin will continue well.”

This would be amazing because belief is powerful. Belief in whatever it is that offers us help and aid in our darkest moments is what helps us to survive. I want  to believe in Gavin’s wellness, but this afternoon it felt a little hard. Do I have any good reason to believe that there is another vicious tumour growing in Gavin’s brain? Do three vomiting bugs in two months indicate that or is that normal preschooler stuff? Does he seem lethargic, odd, unbalanced? Yes, at times, but don’t we all?

In reality, in the past month or so Gavin has made incredible leaps physically. He is at gymnastics, physio and Sportplay weekly and shows a huge improvement each week. He is racing around the neighbourhood on his balance bike, so fast that I have to run to keep up now.  He has finally started to take the stairs one a time, and has almost mastered hopping on one foot. He’s terribly funny and creative and is becoming so independent.

So his appetite was a bit poor today. Is that a good reason for me to think that he’s suffered a relapse? Otherwise he was totally energetic and I had to rein him in to prevent him from over-exerting himself.

The only way that I will know for sure that nothing is up is to take him to MRI. I called them today to harass them. I called our contact nurse to get her to harass them. They will not be harassed. They insist that there is nothing they can do and they will get us in whenever they can. They tell me they are booking for October. Our appointment was supposed to be end of April.

This has turned into a long rant. My thanks for your patience. My thanks for your belief and your prayers. Please join me in WILLING the MRI department to get us an appointment.

I’m going to go and work on believing in my son’s complete wellness a little more.

And, how many bugs have your kids had this year? And tell me something your preschooler does that is completely weird.

Clearly, I haven’t been blogging much of late. I’ve had my hands full with other ridiculous life challenges and I’ve been taking a break from blogging, correspondence and housekeeping.  Judging by the real and metaphorical dust bunnies around me, I’ve got some catching up to do.

But first I thought abeanslife readers might be entertained by some recent observations from the chatterbox. Every day he says something that amuses me, surprises me, or lances me straight through the heart. Enjoy.

MISPRONUNCIATIONS

Wow, I need to lie down. I’m completely gezhausted.

Quick! Stop them, they’re kescaping!

NEWLY MINTED

I have to carpent this wall. (Why isn’t there a verb for “carpentry?”)

I’m putting so many stickers on this… I’m making it completely decoful.

Look out! I’m holding a firematch and I’m going to  light it on fire!

JUST HILARIOUS

(This conversation was had between Bean and Daddy at a local ski hill.)

D:  Okay, we just have to go over here to catch the shuttle to the other base.

B: We’re taking a shuttle?

D: Yup, the stop is right here.

Long, thoughtful pause…

B: Does this shuttle go to the moon?

THINGS THAT HURT MY HEART

(Gav and I have been having a lot of conversations about when he was sick and in hospital. He doesn’t remember treatment and he doesn’t know that he had a brain tumour. Still, he is trying to make  sense of why he always has to go to the doctor and in for tests.)

B: So why did I have to go for an MRI?

Me: Well, the doctors wanted to take some pictures of your head to make sure that there is nothing wrong.

B: Okay. Yeah, I guess every kid has to go for an MRI sometimes, right?

(We have also been talking  a lot about the future and about when he grows up. He always wants to know when he’ll be able to drive a car or have his own house. )

B: When I grow up, I’m going to have my own house and my own kids, right?

(I hope so, my love.)

Me: Yes, of course. If you want to, you can. Are you going to get married, too?

B: No.

Me: Who is going to be your kids mum?

B: You are!

He and I often have quite amazing conversations in the car while we are driving from point A to point B. He is full of intriguing questions like, Why is bird poo white? and What is a beast? We talk about babies, laws, school, growing up, and animals. On some days he wants to be a doctor, and on others he wants to be a builder. He often tells me extremely long-winded stories with no real point, and I have to laugh hearing my own phrases echoed by his little voice. Yes, unfortunately, the house fell down he tells me, or Apparently, they are working on a new project.

So THREE and so grown-up at the same time.

The results are in and Gavin’s MRI from today looks great. We are busy celebrating at home while Gavin has a well-deserved rest after a busy day.

As ever, many thanks to our family and friends for your never-ending support and love. We feel incredibly lucky tonight!

Cancer. The big C.

Tumours, chemo, radiation, side-effects. All of it is inexpressibly ugly and sad. We spend our lives fleeing it, and living in fear of it. And yet it touches all of us – we all have known someone who has succumbed to a cancer of some sort. We also all know someone who has survived, sometimes for many long and healthy years of life. When it touches the people closest to us, our children, our parents, our brothers and sisters and best friends, it wounds us. When it invades our own bodies, it’s a betrayal of the highest order. We think, how? How could my body be doing this to me?

We laymen tend to think of cancer as one disease, but truly it is not. It is just easier for us to use this one word than to get into more technical jargon. I remember meeting with neurosurgery before Gavin’s tumour resection. Craig, my father, and I,  were shell-shocked and teary, but trying to absorb the information we were being told. I can’t remember who, but one of us asked, Is it cancerous? The doctor smiled and gently explained that the word “cancer” doesn’t mean much to neurosurgeons, they tend to think more in terms of scales of malignancy. And yes, Gavin’s tumour was extremely malignant, a nasty, tooth-gnashing monster.

These monsters need to be beaten back with the weapons we have at our disposal, with chemo, with radiation, with stem-cell rescue. If we mothers had swords to injure these beasts, we would fight them until our last breath was breathed, we would chase them down, and destroy them if we could. If only we could.

We can’t. So we must allow our children to be poisoned in the hope of saving them. We must watch them lose function in their organs, lose their hearing, lose their sight. Brain tumours take from them the ability to walk, to talk, to eat, to hear and see. And yet, if they live, it is a triumph.

Gavin is still triumphant. Yes, he has suffered losses, but they don’t impinge upon his daily life. He is joyous, he runs and jumps and goes to preschool and enjoys an occasional brownie. He loves reading and art and cooking and games and playing. Knowing this, I know how lucky we are. How blessed I have been. Sometimes, when we get into a big debate about bedtime or the amount of DVD-watching that has gone on, I have to check my irritated voice and remember how lucky I am.

Gavin does not yet know that he had “cancer.” We have talked about the fact that he was sick and in hospital, and I’ve told him he had to take a lot of strong medications and now he is better. There will come a time when we need to talk more about what that has meant, as Gavin cannot hide his history. The opening in his skull, his sparse hair, and his impacted swallow reflex all indicate a health crisis of some sort, but the majority of people cannot identify what it is, as collectively we imagine kids with cancer as these bald, brave little tykes pushing their IV stands as they go. Gavin was once one of those. But now, he is his hilarious and energetic self, scripting play story-lines, creating beautiful works of art and demanding attention 24-7.

And yet, despite all of Gavin’s great gains, I can’t banish the voice of fear that murmurs at me, about relapse, about what if? On Boxing Day, we had a scare, as Gavin complained about pain in his ear. We are not yet in a place that we could put that down to the cold that he has, it must be relapse, right? But going over all the symptoms, we had to conclude that all is well. He is not lethargic, vomiting, acting oddly. I examine him closely every day, and ask Are you okay? on at least an hourly basis.

MRI is coming soon. We are waiting to get in on a cancellation appointment some time this month. Every day that passes without a call from MRI is painful. I want to pass this hurdle and bask in the glow of post-MRI time, when all is well, when you know that you have won another reprieve and can try to live life as normally as possible. At least for the next three months.

That is life as a cancer mama. Moving from scan to scan and praying that each time you will have won yet again. And having no way of knowing if you have, but having to blindly believe that all will be well.

I believe. Many of you do too. All will be well.

Gav wasn’t an early walker, but nor was he late.  He took his first solo steps in a hotel room in San Francisco a few weeks after his first birthday. He then spent a long flight to Sydney tottering up and down the aisles of the plane. A few months later, he was walking all the time, but not stable. I was concerned enough to take him to our pediatrician to note that he seemed unbalanced in some way. She didn’t see anything alarming in his gait, so we decided to see if things improved, and they did. Several months after that, there was a quick deterioration and we found ourselves in the ER one June evening learning the worst news of our lives. I was later told by neurosurgery and neuro-onc that it was not likely that my earlier fears were due to tumour growth. Gav’s tumour was fast and aggressive, and probably grew to the size that it did in about three weeks. Continue reading “Jumping Bean”