Family in times of crisis

When I was just a baby, my older sister Michelle, being at the wise age of 2, decided that I was boring and informed my mother that this whole baby thing had been a bad idea. My mom was probably only slightly tired at the time (after all, she had been given the entire 2 week unpaid maternity leave from work which was all you got back then, and then had had to go back to teaching full time. How could that possibly tire you out?) She responded in a mildly annoyed way (I’m making this part up of course, I have no memory of this but I like to picture it this way): “Well, Michelle, what would you have me do, throw her in the garbage?” To which Michelle crossed her chubby little arms across her chest and dared my mom: “Well, yes, let’s throw the baby out.”

There are differing versions of this story depending on who tells it, but in Michelle’s version I am actually casually tossed into the garbage can, at which point my valiant and righteous sister quickly changes into her superman costume and rescues me. My mom claims she pretended to walk toward the garbage can while holding me and Michelle flipped out and begged her to change her mind.

Regardless of which version is correct, I somehow survived the brutal garbage canning of 1968, and went on to become a normal child (Michelle is snickering as she reads that.)

From that moment on though, Michelle has been rescuing people. I have a relationship crisis: Michelle drives 8 hours to be by my side. My brother Billy’s car accident: Michelle is the first to the hospital. Younger brother Martin needs help out West: Michelle gets on a plane. My mom’s surgeries: Michelle is there day and night. I move across an ocean: Michelle keeps showing up just because I get married or I have a baby or my baby gets cancer.

Ow that last one felt like a glass of cold water in the face. Let me re-group and re-cap: Michelle is the Family Social Worker, who is basically in charge of any Crisis Department. My family regularly has crises, so this keeps her quite busy. Never mind that she has a family of her own and a job… oh yeah, as a social worker.

Billy is the Strong Silent Type. I’m not sure why he’s always described like this because he’s not really that quiet. He did beat my son Jesse at arm wrestling last year, which I would not have bet on even slightly. So I guess that makes him Strong. He was pretty Silent during his coma for a couple months back then after the car accident, so maybe that counts.

Martin is the Black Sheep. This is only because he has dark hair and tans better than the rest of us.

And Julie is the Beautiful Young Princess of the family and gets to do whatever she wants. She will disagree with this when she reads this on her own laptop after watching tv while eating ice cream. Ask Michelle and Billy and I about desserts in our home when we were kids. Go on, just ask.

So why have I regaled you with descriptions of my family? Well, maybe to make you think of yours…

Family is what gets you through a crisis. For many of us, friends and extended family are included in that overall description of “family”. When you are dealt a cancer diagnosis, your family, whatever it’s form, is who shows up and closes ranks around you, a show of defiance in the face of an enemy attack. Together, we can fight off the attacker.

My family is a big one. I have… uh… a few cousins. (Shout out to my cousins here… just how many of us are there? I’ve lost count.) My dad comes from a family of 5 kids. My mom has 10 brothers. Yep, you read that right. And since they are all married and most have kids and most of their kids have kids… Let’s just say I’ve never had a reason to feel alone in the world.

When my grand-maman was still alive (she of the truck-caning incident) we had large family get-togethers, at Christmas, Thanksgiving, Easter, and sometimes just on Sundays, because, well, that’s what you do. But mostly in the summer, we would have the Family Reunion.

A Family Reunion in my family lasts three days. It also takes months of planning and strategizing, throwing together possible scenarios, location, theme, meals, wine to serve etc. To do the strategizing the family has to get together several times throughout the months leading up to summer, and eat and drink and debate anything debatable like the merits of whether to finally hold it out in Vancouver for once against the fact that no one feels like flying out there, and since none of the Vancouver relatives came to the meeting, they get outvoted. (Go on, Onc’Eugene, you know you need to comment on THAT!)  It is always finally decided to host it in a location where we can all pitch tents and make campfires and sing songs loudly late into the evening while sitting around the fire, the kids running around behind us in the black starry night. So usually somewhere not far from Ottawa or Montreal. Often it has been at my cousin Louis’ who is not allowed to ever sell his home by the water inAylmer. It’s actually been written into the family bylaws. (Has anyone told him this?)

This year, my family is planning the Family Reunion once again. I am picturing them in their “planning sessions”. They argue and they laugh. The kids who used to run and play in the starry night are grown, and have kids of their own.

I moved away from it all when I moved to Europe, and I miss it. Especially in times of crisis, you need your family around you.

And yet, somehow, magically, my family has managed to support me from across the ocean, throughout our cancer crisis. Cards, gifts, letters, emails. One uncle was so worried that he might miss Elliot’s birthday that he mailed the card priority, costing a small fortune, to show he cared. I have cousins who’s wives keep in touch with me even though we have yet to meet. Elliot feels he is part of one huge, extended family.

There is also my husband Martin’s side of the family who have been there for us right from the beginning, about whom I could write a whole blog article too. (Note to self: write blog about Martin’s family. Enquire through trusted sources (his mom and sister) about amusing anecdotes from his childhood to include in the story. Perhaps the time he was attacked by a monkey? Or that time he shot himself in the eye? There is definitely some material there.)

Cancer. It sucks, it scares, it robs of our innocence and our time together. But it doesn’t define us. Facing Cancer Together… Great name for what this battle is truly about.

A Day on the Chemo Ward, fourth and final part

 

So I’m sitting here in the chemo ward and starting to feel slightly depressed at the memory of the night Dr. Latour and Dr. Nelson gave us The Diagnosis. There doesn’t seem to be any new kid coming, and I can’t just sit here for the next three hours remaining of toxic chemicals being administered to my perfect little boy feeling down. I look at Martin, and he wisely feels my stare and looks up from his phone.

He smiles. I ask what he’s reading about on his phone. He excitedly starts to explain to me all about a new gadget that is coming on the market soon (possibly a mobile phone, but because he doesn’t use that expression for it and instead says the Android 4 point something I am left to wing it) and how it will be in Europe soon but the problem is they are already working on the next version so he is not sure if he should buy this one or wait for the next one. I’m smiling and nodding and trying to make appropriate comments. It’s a bit like our conversations about wine. He is European and has clearly not really noticed that I’m Canadian. You could give me some cough syrup and tell me it’s a vintage 1995 and I’d drink it. If it’s not beer, our whole country is just faking it. He actually knows a lot about wine, and in true Scandinavian form, he is willing to pay a lot for the good stuff. In true Canadian form I have trouble paying more than 50 dollars for anything that doesn’t come with an engine.

People have asked us how we are holding up, how our relationship is doing.   This type of crisis could easily cause a marriage to rupture at the seams, crack under all this pressure.

It’s strange though… This whole thing has actually made us stronger. I would have rated our relationship pretty high on the “gonna work” scale, (as opposed to the “doomed to self-destruct scale.) In any case, I think we have reached a new level in our marriage. We were lucky to already really happen to like each other basically just as we were. It’s actually possible that Martin sees right through my Canadian wine-and techno fake act, but keeps right on talking because he thinks I’ll see the light if he just keeps explaining the advantages of the Google Android line of product over the Apple religion…It’s true that when I start to ramble about literature or parenting or schooling he listens as if he actually shares my passion. So maybe he’s faking it a bit too.

In any case, my point is, we have actually gotten closer. So that is one to put on the list of Cancer Pros. We already know what’s on the Cancer Cons list, so there’s no point even writing it. The Pros list is much more interesting, and challenging to come up with. Like, for example, the shampoo savings! The close friendship I have developed with my pharmacist! The medical lingo I have acquired! The vomit stain removal expertise skills! The fact that little things don’t stress me anymore! The shared battle against this cancer I am fighting with my husband… no exclamation point.

He does amaze me. Like Elliot, he has shown a strength I can only admire. I know why he is talking about the phone now (it could actually be a tablet, now that I listen a bit more carefully). It isn’t because he is unaffected by where we are and what is happening. It’s because these things make him happy, and he needs to cling to anything that brings him close to feeling happy, even close to feeling ok. So I am thrilled to hear about the gadget thingy, and I wish I could just go out and buy it for him myself. That, by the way, would be counter productive, as apparently the search for the exact right gadget is part of the thrill, so if I bought it that would ruin the chase. Good thing he’s not a womanizer, or I might be in trouble. I don’t mind competing against Androids. Oh that totally came out sounding the wrong way.  Is it ok to giggle to yourself while you sit in the chemo ward with your child getting his dose? What are the odds someone will notice and think I’ve lost it? Ok here’s the real question, what are the odds I have?

Martin decides to go down to the coffee shop and get us some more coffee.  I ended up reading a book and playing a puzzle with Elliot after all (turns out I am actually competitive).  And now Elliot is back to watching a movie on the Ipad again. The Rude Mom’s daughter has fallen asleep, the mom is staring out the window. I consider talking to her, but I think she needs time. Talking to me would make her feel too much. Looking at Elliot would make her think about her daughter’s imminent hair loss. She is not ready to be part of the Cancer Moms social club yet. She stills holds onto that normalcy myth, and isn’t quite stepping into our world yet. Some people would call it denial. It’s really actually just part of acceptance.

The Smily Girl and her mom are getting ready to leave. Smily Girl has been in treatment since last summer, and “only” has another year or so to go.  The nurse comes in to remove the chemo needle. These are the bad times. The needle is sticking out of the port-a-cath, which is a small box inserted under the skin on the upper right chest. The port-a-cath is connected to a vein, so that the chemo can be administered easily. Most children receiving chemo have a port-a-cath, which is installed surgically before the treatment starts. It spares them the need to have an i.v. inserted in the fragile veins of the  arm or hand every time. Ah, the miracles of modern medicine. Before this, many cancer patients suffered terribly from the damage the chemo would do to their veins, or even, worse, from the chemo medicine spilling out onto their skin, and destroying large patches of it within seconds. The only thing is, a needle needs to be popped into the port-a-cath for each treatment, and removed after.

Apparently it doesn’t hurt much. The kids beg to differ. They all, universally, freak out when it’s time to insert or remove the needle.  So the nurse comes in, goes to their bed and cheerfully says it’s time to remove the needle, the chemo is done. Smily Girl freaks out. The nurse tries to reason with her. The mom tries to calm her. The tray of bandages and syringes the nurse was carrying almost goes flying, but she catches it in time and places it on the table. These nurses are pros. She never loses her smile. The mom holds her daughter’s legs and the nurse holds her arms with one hand, then somehow yanks the needle out with the other. Smily Girl’s screams reduce to a whimper. Mom releases legs. Nurse continues to smile and says something about how brave Smily Girl was, while quickly applying antiseptic and a bandage. The bad moment is over. The mom and I happen to exchange glances, and we start laughing, then nervously stop, feeling the inappropriateness. Smily Girl says she wants ice cream as soon as she gets home. Mom agrees breathlessly, running her hand over her daughter’ thin wisps of hair.

Parenting when your child has cancer is a whole new ballgame. All the rules are out the window. Forget all the ideas you had about chores, food, television watching, video games, bedtime, sleeping in their own bed, buying toys for no reason… It’s a free for all.  I’m not sure how we are ever going to get back to any kind of normal discipline or rules at our place.

For example, Elliot frequently eats while watching TV. That’s because they told us at the beginning to let him eat whatever he wants, whenever he wants, however he wants. They said he may have no appetite, may be tired a lot, may need special treatment…

Elliot heard all this, arrived home after the first week in the hospital, declared himself King and has been ruling with an iron fist ever since. It’s actually quite lucky that we never had junk food at home, so he doesn’t know about it,  because he basically eats whatever he wants, whenever he wants, however he wants… Non stop! I almost feel like putting in a complaint with the hospital, they told us his appetite would be reduced, and he’s still eating us out of house and home, just like the other two, who grumpily are not allowed to have breakfast while watching a movie. Of course, there are also those times when he just lies on the couch refusing most food, so we feel he is entitled to some freedom of choice the rest of the time.

The chemo is done soon for us too. We get home late that day. As we pull off the highway at our exit Elliot looks outside and says in a surprised, innocent voice “Hey, I didn’t even get sick this time!”.  Martin and I are exhausted. Elliot decides to ride his bike from the car to the front door because his feet are “too tired to walk”. Once inside, he announces he will watch two tv shows and then play with his lego, and he would like a sandwich while watching tv please. Martin makes a b-line for the coffee machine and I get busy with the peanut butter and jam.

And so goes another day as a Cancer Mom. Is it really that bad? Yes and no. Yes, much more, and no, not as much as you think. This answer has become standard for me, but it actually can be applied to almost any major life question, especially when asked by a person who has no idea yet…

“Is childbirth really that hard and painful?”

“Is having a baby really that life-affirming and deeply meaningful?”

“Is parenting really so incredibly exhausting?”

“Is marriage really so easy when you meet the right person?”

“Are teenagers really that frustrating?”

“Is Madonna really older than me?”

“Is it really a bad idea to go on Facebook after a glass of wine?”

Yes, much more, and no, not as much as you think…

You get the picture. Yes, being a Cancer Mom is “that bad”. It has reduced me to a quivering mess, collapsing to the floor because my legs gave up trying to hold me steady. But no, it’s not “that bad”.  It forces you to see what’s important. To live in the moment. To appreciate. To slow down, and take a breath.  To realize that we are all on the same road, with the same destination. It’s just the length of our road that’s unknown.

People say they are impressed by how strong we are. I like the saying ” You never know how strong you are until being strong is the only choice you have.”

 

A month goes by, with more chemo ward trips, more doctor’s visits, more life.

Today is The Big Day. Elliot had a CT scan a little while ago and now we sit in the waiting room, waiting for our doctor to call us in for the results.  They do the scans every three months, to check for any signs of relapse.

This morning we were all kind of crazy. Picture your typical morning, maybe you have to get the kids ready for school and yourself ready for work, your husband also rushing around getting ready. So there is the normal morning madness as everyone struggles to get out the door in time (or as the parents struggle to get everyone else out the door). But to spice things up, in this case, both parents are kind of insane, the anxiety of the past month having built up to the point of almost drowning in it. We should almost install a video camera in our home and later watch the whole scene on fast forward, it would probably make us laugh till we cry. Or cry till we laugh.

Elliot did ok until we got to the hospital. Then he took one look at the CT scan machine, crossed his arms, and declared he would have no part of it. We remembered only then that he had actually been asleep for his first scan. Not an option this time. We beg. We bribe. We get angry. He holds firm. When asked by the patient-at-first-but-now-starting-to-lose-it technician why he won’t do it, he replies “because the machine looks like a big metal bagel and I don’t want to be squeezed through a big metal bagel”.

I swear I’m not making this stuff up.

Roughly 20 minutes later (or 5 years, depending on how you count stress-minutes) he finally caves. Deep down, even though he is only 5 years old, he knows this is important. Making a fuss is his only way to have some control over the situation.

 

And now we sit here and wait for the results. Martin is staring at his mobile phone, unblinking. Elliot is sitting next to him reading a book. I am pacing. Pacing has become my main form of exercise, I am pretty sure I have burned thousands of calories with this little known fitness regimen. I watch people come and go, the anxiety buzzing through my body like really loud tinnitus. I’m pretty sure if someone touched me right now I’d give off an electric shock.

I see a little bald girl run by, she looks vaguely familiar. I pace toward her. She has run into the chemo ward and I follow her in. I almost bump into her mom, who is now helping her onto the scale. It’s Rude Mom. She doesn’t move while the nurse waits for the scale to register the girl’s weight, both of us riveted by the red digital numbers. Then after the numbers settle, Rude Mom breathes out and looks up, recognizing me. She smiles and says hi. I ask how they are doing. She laughs and says fine, although the steroids her daughter is on has turned her into a little monster! Laughs again. We chat a bit. Another mom and child come in. We both say hi, but the mom doesn’t answer, just holds tightly to her long-haired boy’s hand and waits for the nurse to come back. They stand there, awkwardly, in the middle of the room together, like a little island surrounded by deep blue sea infested with sharks. Rude Mom and I look back at each other and both think “newbie”. We don’t say it, and yes, I can now read her mind. She has joined the Club.

Without actually hearing it I sense we are now being summoned into our doctor’s office, so I speed back out into the hall where Martin is standing up and staring at me with that look on his face that is panic mixed with his “everything is going to be alright” expression.

Dr Latour is the one who escorts us into the office, but as we walk in I see Dr. Winters sitting behind the desk too. Oh my, a double date, we must be pretty special. A moment of panic while I hope we are special for all the good reasons, not the bad ones which might be interesting for an oncologist.

Dr. Winters is staring at the computer, his hand scrolling the mouse, but looks up when we walk in.

“It’s really good news”. He says.

I don’t remember much after that.

 

A Day on The Chemo Ward, Part 3

Elliot stopped watching a movie for a while and has eaten his lunch. I’m so glad he is eating well, but I am also calculating how hard it will be to wash the car seat if he’s sick on the way home later. It’s important to choose food colour wisely.

 

He really is handling this all so well. He amazes us. But then again, we amaze us too. We are really coping with this well. We are past the terrified-beyond-belief point, and have settled into nervous acceptance. People say cancer makes you stronger. I guess so. But really, what choice do we have? I can’t exactly just curl up in bed under a heavy blanket and come out in 6 months, can I?  (Oh how I wish sometimes I could…The doctor gave me some anxiety meds to help me “cope” but I never used them. I really wish there was a “six months under heavy blanket” prescription. By the way, I never thought I would be someone who said “meds”. And now there you go, I’ve gone and written it. Probably all those omega 3s from the salmon sandwiches making my brain all light and fuzzy.)

 

The thing we didn’t know, going into this, is that Elliot will continue to be a real boy, and that we will continue to have to be real parents. He’s not acting like a patient. It’s funny, at the beginning he got a lot of get well soon cards.  It didn’t make sense to him. He feels fine, always has. Only when he has the nausea, which is only for a few days after the more intense chemo treatments, but even then he still manages to stay cheerful. To him this whole cancer thing has been very intangible. He never felt wrong even before diagnosis, and for that I suppose we should be eternally grateful. We got lucky to have found it when we did. I noticed the lump sticking out of the side of his belly after his bath one morning, and since I’m a worrier, I brought him to the pediatrician the same day. Felt foolish. Actually said to her when we arrived that I was probably wasting her time. But the look on her face when she examined him… Fast forward 8 months and here were are. Lump gone. Kidney it grew on too. Chemo successfully destroying all the baby lumps that had grown all over his lungs. Radiation therapy having zapped the empty space where the main tumour used to be to make sure no little stray cells decide to make trouble.

 

But other than the fact that our child has cancer (there’s a great opening line), our life goes on like everyone else, with the same issues as everyone else. We have jobs and school and chores and all the millions of things normal parents juggle every day. We try to make time for the two older kids so they don’t feel abandoned, we try to make time for each other so that our relationship thrives. By that I mean of course that we all watch tv together. Ok we also have loud indulgent family suppers together, not every night since our family of 5 not surprisingly has 5 different schedules. But we are surviving this together, all of us holding on to the fact that medicine is probably going to keep us together for quite a while, not really needing to talk about how close to the precipice we have come.

 

As I sit here in the chemo ward, I think about my two older boys and feel a wave of motherly love combined with a sudden desire to text the oldest and ask if he really did remember to take the garbage out this morning when he left. Parenting is all about balance.

 

Suddenly the doctor comes in to check on us. All the parents drop what they’re doing and sit up. The Rude Mom even stands (such a newbie! Never appear so desperate in front of the doctor! It’s like dating, you have to make them come to you). Martin puts his phone down. It’s Dr. Latour, and she scares the crap out of me. I spend my time whenever she’s around half terrified and half furious. I have no valid reason for this, she is actually much shorter than me, I could take her. Ha ha. No, the reason I am angry and scared is because she was The One. It was her who gave us to official diagnosis. “Your son has cancer. It is very advanced. His odds are 50%. But we will cure him.”

 

I have replayed that conversation over and over in my mind so many times it’s like an old movie now. I’ve tried to logic my way through it. How could she say the odds are 50% but in the same conversation, say “we will cure him”. Those statements don’t go together. Did she mean that statistics say 50%, but their treatment will work better than that? Or did she mean we will “try” to cure him? But she said it twice that night. “We will cure him”.

 

The conversation goes around and around in my head like a merry go round, making me dizzy. “Odds are 50%. We will cure him. 50%. Cure.”

 

I would ask her for clarification if I wasn’t so damn scared of her. Also it is unlikely she would remember our exact conversation of eight months ago word for word as she probably hasn’t been replaying it over and over in her head like a maniac.

 

My fear and anger do not come from anything about her personality, or her treatment of Elliot, or how she treats us. In fact she is very kind and patient. She obviously really cares, when Elliot told her he wanted Santa to bring him a toy hospital for Christmas she sighed and hugged him.

 

It’s because it was her who gave us the bad news, and because of that every time I see her my body and soul go back to that moment, and I am shaking with fear and fury. Inside only, of course, on the outside I act just like all the other moms, which is that I try to make sure she likes my child and me best.

 

She does the rounds, stopping at each bedside and talking with the parents, going to Rude Mom last (See? Too desperate.) She doesn’t really stay long, each of us had a private meeting with her before our chemo dose today, where our child was thoroughly checked over and our questions answered, the treatment plan discussed. She’s just here now to make sure everything is running smoothly.

 

When she checked Elliot earlier I felt a wave of fear overtake me as usual when he was lying on his back on the examining table, shirt off, and she started to feel around his belly. She always starts on the left side, where he still has a kidney, and presses into his stomach like she’s kneading bread. I wonder if she realizes how much the parents are holding their breath during those moments.  Waiting for her to be done, watching to see if she is acting normal or concerned. Does she realize how we watch her face for the slightest hint that something is wrong? To her, this is routine, she could be thinking of something completely different while examining him, and we are on the edge of our chairs, holding our breaths. She could suddenly remember that she forgot to return her library books, and a look of concern could flash momentarily across her face, and we would die. I’ve already died a hundred deaths that way.

 

There’s another doctor we see sometimes, Dr Winters, who is one of the head honchos. He is older than Dr. Latour, and is always smiling and relaxed. I wonder how you get years of experience in pediatric oncology and still manage to not drown every now and then. They must see some awful things. They live it too; they all, without a doubt, want to cure our kids. The nurses too. How do they keep smiling? Then again, how do I?

 

Dr. Winters always has a good expression on his face while he’s examining Elliot. By that I mean, if you happen to be a parent sitting there analyzing facial expressions with the hope of determining whether your child will live, he fills you with hope. He’s just always so casual and relaxed around us. I fear he’s like that with everyone. I would like to believe it’s because he is so pleased with how well Elliot is responding to the treatment and is completely unconcerned about his recovery, but there is a part of me that believes this is just his normal personality. He could actually be telling you multiple new tumours have been discovered in your child’s entire body from the tip of his nose to the smallest toe, and you would smile dazedly and think everything is great.

 

It was Dr. Winters who gave us the results of the second CT scan, the one done after 6 weeks of chemo. He started by saying it was good news, as soon as we entered the room, before we even sat down. That set the scene. We hardly listened to anything after that. At one point I remember asking if it meant that a second operation on any lung tumours was definitely ruled out, and he casually scrolled the mouse while gazing at the CT images on the computer and said “hmmm… well… I can’t completely rule out the possibility of a second operation…” He said it in the same cheerful, casual way he always sounds… Like, he could have been looking over the dinner menu and said “hmmm… I can’t completely rule out the possibility of dessert…”

 

So ok I guess I have trust issues. I don’t completely trust the doctors. I analyze everything they say, every way they act. And yet they are truly amazing people. Dr. Latour, for example, was the one who met us and admitted Elliot to the hospital pediatric oncology floor (It’s a whole FLOOR), eight months ago, before we knew exactly what this was Elliot had in his abdomen. She greeted us at 8:30am with another doctor, Dr. Nelson. They both examined Elliot, discussed with us what they would do that day (blood tests, CT scan for which they would have to put him to sleep, results later in the day).

We saw them come and go, passing in the hallway outside our room throughout the day, as our worry slowly increased and we started to wake up to the fact that we were possibly in this for the long term… We still were so innocent then. I saw Dr. Nelson running down the hall late in the afternoon toward another child’s room. I remember thinking, “oh, he looks worried, and he’s running. Something serious is happening!  I hope nobody’s kid is desperately sick!” Not realizing how close my own child was to needing a doctor to run to his room…

They had a few emergencies during the afternoon, and we were only finally summoned to a private meeting room with him and Dr. Latour at 8:30pm, to be given the results of the CT scan. They asked us to come alone, and they arranged for a nurse to sit with Elliot. That’s when my heart started stopping.

 

I won’t go over the details, it is still too hard. But my point was, notice the time frame. Those two doctors were already there before we arrived at 8:30am, they were still there to give us the results patiently at 8:30pm… and they didn’t leave even after that. Dr. Latour stopped by our room some time later (the clock actually stopped for me at 8:30pm that night, so I have no idea how much later it was… I can tell you roughly how many tears later it was, and how many punch the wall moments later it was…) Their dedication to their job, and to curing our kids, is remarkable.

So trust is what I have to do. It’s all I have. She said they would cure him, and it seems to be happening. It’s late, the house is quiet again, and time to sleep.  More later.

Advice to Adults With Cancer from a 5 year old

Here’s a light-hearted look at cancer from the point of view of my son Elliot, who was only 4 and a half when diagnosed. I know many of the adults I am in touch with who have cancer, or who are helping a person with cancer through this journey, will relate!

Advice to adults with cancer from a 5 year old

1. It is perfectly acceptable to have a complete tantrum and throw your shoes around just before leaving for the hospital.
2. You always deserve a present after chemo.
3. If you feel like showing more respect and politeness to the hospital clown than your oncologist, that’s ok.
4. If you manage to grab the syringe of medicine from the nurse, it’s their loss and you are then allowed to squirt its’ entire content around the room.
5. You are allowed to complain loudly about any smells like perfume, but you are also allowed to fart freely whenever and wherever you want.
6. Anyone who says “this one tastes like syrup” better be not be lying or they can expect to catch some spit.
7. You are allowed to worry about life and death, but only to the same extent that you worry about whether Santa Claus will be able enter your home if you don’t have a chimney.
8. Speaking of worry, you are not allowed to worry about anything that is not going to happen today or tomorrow.
9. Any bad thing that happened in the past should be quickly erased from your mind using ice cream.
10. It’s ok to throw up directly on your caregiver instead of into the bucket they are holding. It will create warm and funny memories for them once this is all over.
11. Good friends may stare when they first see you without any hair, but they are quickly more interested in all your new toys. So make sure you have lots of new toys around all the time.
12. It is the right thing to do to jump off the examining table if the doctor’s hands are too cold.
13. A popsicle for breakfast is a good idea and goes well with bacon.
14. If someone rubs your bald head and says you’re cute you should stare at them in complete boredom until they stop.
15. Always believe that scars are badges of courage and make you look like a pirate or a superhero.
16. Jumping on the bed is a perfectly acceptable form of exercise.
17. Someone should always be available to carry you if you don’t feel like walking anymore and they will be grateful if you look at them lovingly and say “You’re my slave.”
18. It’s a good idea to frequently press the little button next to the bed that makes the nurse come running, because she might be lonely and bored, and enjoys picking your crayon up from the floor.
19. The only part of hospital food you should eat is the desert. The rest is not really food anyway.
20. Make having fun your priority, all the time, no matter where you are or what’s going to happen next.