Archive for 2013

Holding Steady

Monday, October 21st, 2013

As October flies past, I’m looking back over the last few weeks with continued thanks that Gavin has been mostly well. His episodes have ratcheted down from daily to a few times a week. He manages them, having short lie-downs at school or home until they pass. I still have no idea what could be causing them, but with a clear MRI under his belt, our major worries are on the shelf.

October 7th found us in clinic, days which, as you know, usually leave me frustrated, anxious, or both. This time was no exception. One of the staff doctors in neuro-oncology has the special ability to instill fear and anxiety in me, partly due to painful memories, and partly due to the fact that I think he’s simply seen too much, and can no longer believe that everything will be alright, with anyone, ever. So though I should be leaving these appointments in a celebratory frame of mind, I often don’t, but feel the shadow of doubt cast over my certainty of Bean’s wellness.

Any cancer parent knows that our fears and doubts are our constant companions. We can choose to let them rule us, whispering in our ears day and night, or we can keep them in a small, quiet box,  firmly ordered to just STAY THERE where we can keep an eye on them, knowing if we open the lid even a crack, they will burst through and start scratching apart our joy.

To keep my joy intact I know I have to watch myself well, eat well, sleep well, go to yoga, visit the Buddhist temple a couple of times a week and breathe light. I need to surround myself with people who broadcast positivity and whole-hearted belief in Gavin. There’s just no room for anyone who does any less. There should never be room for anyone who does any less – but I consider myself blessed to have the most beautiful people in my life, family and friends both.

To remove one of those boxed-up fears permanently, we’re getting closer to an event that’s been on hold for the last 2.5 years. The week before last, I met with plastics to discuss Gav’s upcoming skull surgery.

To that end, Gav will have a CT scan this week to properly map the defect area. For anyone who’s wondering how we got here – you may remember that back in 2011 we discovered that Gavin’s shunt had been blocked for a very long time. (Can read here) The shunt blockage caused increased pressure, which was released in the small defect left behind from surgery. Over time, the pressure eroded Gav’s skull, which was eventually reabsorbed by his body, making a small hole into a very big hole.

Craig and I chose to wait until he turned 5 to address this, as we wanted to give his skull time to achieve its majority growth, which (apparently) it now has. The hope is that we will only have to do this surgery once, and it will probably happen sometime in early 2014 as it takes several months for the plastic plate to be ordered and delivered. I’ve also learned that if  we had to pay out of pocket for this device, it would cost us a cool $10,000, so once again give a cheer for Tommy Douglas and universal healthcare.

Once the surgery is done, I will have to adjust the way I parent Mr. Gavin. The past couple of years have been spent helicoptering him in a most spectacular way, and saying things like, Watch your head, Look out for that, and BE CAREFUL, over and over and over. I’ve removed sticks and sharp objects from other children’s hands when they’ve been a little too reckless with them, I’ve leaped across rooms to cushion his falls when he stumbled, I’ve spent $1,500 on protective helmets for his head (money well spent) and I’ve worried to have him out of my sight for even a minute, knowing that things going just slightly wrong could result in another traumatic brain injury for him.

Our meeting with Dr. Phillips of plastics at Sick Kids was brief – the surgery is not a difficult one for him and he actually did the exact same surgery last week. He doesn’t foresee any issues and the time in hospital will only be a couple of days if all goes well.

Let the countdown begin!

 

An aside about plastic surgeons:

If you’re like me, when you think plastic surgery you think big boobs and collagen lips and crazy Joan-Rivers-faces. I never really thought about what a pediatric plastic surgeon does – because obviously they don’t really do all that other stuff.  Here’s what they do: they repair holes in kids’ heads, they fix birth defects like cleft palates, they address vascular abnormalities and repair and rebuild what is not quite right, giving children a quality of life they would never have had without access to them. They do amazing work. Work that puts their nip/tucking counterparts to shame. It’s really wonderful to have so many teams of astounding surgeons doing work at Toronto’s Hospital for Sick Children, and as always, makes me grateful to live in its radius.

 

FIVE

Friday, September 27th, 2013

Gav's 5th Birthday1

 

On Labour Day weekend, the Gavinator blew out 5 candles on his Iron Man birthday cake.

His wish was fulfilled to celebrate his special day together with the family at my parents’ cottage in Muskoka. In keeping with tradition, there were many presents to be opened and fun to be had in the water on the last weekend of summer.

Gav's 5th Birthday 2Emotions were running high after the failure of ICP monitoring and the immense stress Craig and I had been under after the previous few days in hospital.  But Bean took the whole episode in stride and was only concerned that he wouldn’t be able to try out the “Bongo” – the new water trampoline that Bubby had recently acquired. So although he had a fresh incision that wasn’t supposed to get wet, we solved that problem by wrapping his head in plastic wrap and topping it off with a hat. Bongo time!

Gav on dockBoys on Bongo

The rest of September has blasted past, making it hard to believe that the first month of school is now over. My most fervent wish for September 3rd was that Gav would be able to attend school and celebrate his  birthday and not be sick and enjoy all of it.

The first day of school he was off with cookies to share with friends and his new “spy-scope” to show the kids in Show and Share. For a 5-year-old, having your birthday on the 1st day of school is completely awesome. Not only is he now a “senior”, he got to be the Person of the Day!

Gav First Day of School 2013

The start of school this year was a bit chaotic due to the beginning of the Full Day Kindergarten program at Bean’s school, but the teachers took it all in stride and managed the arrival of 90 kindergarteners with grace.

I am immensely thankful that Gavin has the same teacher as last year, a lovely woman whom I know has helped him thrive at school. She is completely aware of his health issues and concerns, and has helped to put together a plan should he suffer any of his bouts of nausea at school. I’ve given her a yoga mat which can be rolled out in a quiet corner if he needs it. My hope is that I won’t be collecting him from school every other day – if he has a little lie-down, the feeling may pass.

On that note, it has been amazing that most of his episodes have occurred outside of school hours. We’ve had some in the early morning, which have dissipated at the very last minute, say 8:50, and have ended with me throwing Gav in the car and still making it to school on time. At other times, he’s felt sick in the evenings, still vomiting about once a week, but it is controlled with ondansetron and rest. Our absolute priority this year is to make sure that Gav misses as few days of school and activities as possible.

He is still having “the yucky feeling” daily, which means he has to lie down/be carried/avoid food. The problem here is that he is missing about a meal a day, so in the between time I am trying to stuff as many calories as possible into him. We are managing.

On Monday this week, Gavin had his regularly scheduled MRI of brain and spine. I didn’t have time to develop a huge bout of scanxiety, as the last scan was in August. Gav’s concern with MRI’s is that he still needs an IV to receive the contrast, and he really, really doesn’t want one. He may think that he is ready for it, and look as though he will soldier through, but when it comes down to it, it’s still very difficult for a little person to handle. It took some convincing to get him to hold out his arm for the poke, but we finally got there, after some tears and shouting. The next challenge was to lie still in the machine for well over an hour, but he super-starred it again. Once we were free and the IV out, he was satisfied with a cake pop and Batman balloon as consolation prizes, and I had him back at school by 11:00.

Usually, after a scan, I have to wait for neuro-onc to contact me with the results, but this time around I knew that I would be seeing our neurosurgeon Dr. Dirks the next day. Although I was certain the scans were good, it was still fairly nerve-wracking to have the doctor review them while I was sitting there behind him. He quickly assured me that there was no sign of tumour growth, and that everything else looks good except for Gav’s ventricles, which are very, very small.

He is not able to say what is contributing to Gav’s episodes, but the decision that we made was to go forward with the surgery to repair his skull. Having a large hole in your head just can’t be good for you, so I’ve set the wheels in motion for that surgery to happen soon, it will probably take place towards the end of the year. (Lord. Strength. Please.)

Otherwise, our only option is to start playing around with his shunt. Right now that doesn’t feel like the best choice – it’s an invasive surgery and he is not currently in any danger. If we were seeing signs of high pressure, it would be a very different story.

At the end of August, I couldn’t have predicted that we would get through September with Gav only missing about 2 days of school. I am so grateful. He is loving life!

 

 

 

The End of the Experiment

Friday, August 30th, 2013

I am trying my utmost right now to quash some very discouraged feelings I’m having.

The good news is that we were discharged from hospital today. The bad news is that we are no closer to understanding what it is that is plaguing Gavin.

The past two days in hospital passed quickly, and we were lucky enough to have visits from loads of friends. (Thank you, thank you, lovely people!!) Gav feels that he has really hit the jackpot as everyone who came brought fun presents, so he has been busy bragging about all of his new Lego. Despite being tethered to a monitor, he dealt with all of it well, and loved keeping the unit volunteers busy playing with him.

Unfortunately, we were unable to get any useful information from the ICP monitoring. We had hoped that he would, at some point, feel yucky, so that we could see what was happening on the monitor whilst he did. Would the numbers be too high? Indicating a blockage in the shunt, perhaps? Or would they be too low, showing that his shunt is over-draining? But he didn’t feel sick the entire time that he was hooked up. And that was the first 48-hour interval in many weeks.

The window to keep the wire in is 48 hours, and towards the end of the time this morning, Dr. Dirks made the decision to pull the wire, as there was no evidence of unusual intracranial pressure reads.

Once the decision was made, some doctors came in to remove the wire and the stitches. Having stitches pulled out of your scalp is very uncomfortable, but Gav handled it fairly well, although he did take a couple of breaks to shout at the doctors, Hands off! Just get away from me for a minute! Ah, if only we could all express ourselves as honestly as children do. The finally last tricky stitch was gouged out of his head – so he now has two very nice incision scars to go along with all the rest.

As soon as he was bandaged up, he was back to his old tricks, and was happy to have some playtime with our little buddies Charlotte and Zy.

The discharge papers were soon ready, so I packed everything up, and prepared to leave with a heavy heart. I just felt, instinctively, that although he had been well, it was not to be a lasting well, and that as soon as we got home, it would be business as usual with him feeling terrible.

Sadly, my negative predictions came true. He and I came home and found that a package was waiting for him at the post office. (An early birthday present from Aunty Meaghan and the gang.!) He wanted to walk over to the shops, so we went off together, him very high energy, and me full of anxiety that he would tumble and bang one of his gauze-wrapped incisions. That didn’t happen – thankful for small mercies.

Upon arriving home he wanted to watch a movie and demanded pasta for dinner. The moment that he sat down to eat it, he got “the feeling” again, for the first time since Wednesday. Back to the couch, and then quickly thereafter to bed without dinner, and straight to sleep.

Neurosurgery now feels that there is nothing wrong with his shunt. But there is no other good explanation for why he feels the way that he does. And now, having been effectively dismissed by neurosurge, I am back in the position of watching, waiting, managing, without any medical professional who can shed some light on his condition.

The cumulative stress of the last couple of months was enough for me to have my own major meltdown tonight. I felt (for a short time) that I simply cannot do anything more. All of the appointments, medications, experiments, and holistic therapies have done nothing but exhaust me. I am trying to tap into some hidden well of internal energy to just deal with our normal daily life.

Without an answer or any course of treatment to take, I just don’t know what to do next. The only positive I can take from this is that he doesn’t have to have another surgery soon.

Tonight, I sat with him for a few minutes before he went to sleep. He didn’t even want a story, he was completely exhausted. His little face was troubled. When I asked him if he was okay, he said, Yeah, I’m okay. I’m just worried. I asked him to elaborate, and he said, I just really want to go to the cottage tomorrow and I think I’m going to be too sick to go. I assured him that we would find a way to go, no matter what happened. That we would celebrate his birthday together with the family.

None of it will be perfect, but nothing ever is.

Wired

Wednesday, August 28th, 2013

All went well today. If by “well” you mean that there is now a wire poking out of the top of my son’s head. Despite how squeamish that makes me, we are handling it.

We hit the ground running at 9:30 this morning with a visit to the blood-work lab. I didn’t want Gav to get any more upset than he needed to, so we withheld that information until the last possible second. With every poke Gav gets from a Sick Kids phlebotomist, I radiate gratitude that they are so very slick and so very good at their jobs. That hardly hurt at all! said the relieved Bean.

We were soon upstairs changing Gav into his OR jammies, and then killed a good hour playing on the gaming console. He had one round of unwellness, but after lying down for a couple of minutes he was back at it.

All of this is somewhat familiar to us, but it has still been two years since the Bean has had any kind of surgical procedure. So for Bean, it is right outside his comfort zone. He doesn’t even really remember being sedated – as the last time he had that done in MRI was early 2012.

Yesterday, he and I talked about what to expect, and what would happen. I don’t want to do it at all. I wish tomorrow would never come, he told me. I feel like I’m gonna cry. We both shed a few tears together, and I did my best to reassure him that all would be well, that he wouldn’t be in pain, that we would let him know what was happening every step of the way.

The anaesthesiologist and I discussed how he would be put under. (Gav has a past history of bad reactions to some drugs) He agreed that I would be allowed to accompany Gav into the OR – so after donning a sterile suit, booties and cap, he and I were off.

As always, I was amazed by my little man’s curiosity and charisma. He chatted with the nurses, doctors and surgeons and made his usual astute observations. Then the mask was placed over his face, complete with “strawberry” scent, and he began breathing. After a minute he said his eyes felt all weird, like they’re looking everywhere. He then slipped into sleep, and I was escorted out.

It was over quickly – the whole thing took only an hour before one of the neurosurgery fellows had arrived to tell us we would soon be seeing Gavin in recovery.

If you have ever seen a loved one wake up from anaesthesia, you know it can sometimes be a bit bumpy. You expect grogginess, some confusion, but may also see agitation or downright anger. In the past, I saw Gav turn into a raging little beast, kicking his feet uncontrollably and screaming nonononono over and over. So I was ready for something similar, but luckily, he’s now old enough to express what’s bothering him, and he immediately launched in, Ow, ow, my IV hurts, it hurts SO much, ow, mama take your hands off me, they’re too cold, MAMA you’re supposed to wipe my tears away, oh my nose is itchy, rub it for me, NO not there, here. And then closed his eyes for a bit. And then, I’m totally bored here, this is so BORING, when can we LEAVE. I’m starving, when can I eat? I want a bagel with some butter.

It sounds bad, but it wasn’t. I knew my little guy was doing alright, and I’ll take the complaints over incoherent screaming any day. The nurses were with me – and we got out of there and into our room fairly quickly.

Upstairs, Gav demanded crafts, games and entertainment. And food. After inhaling a juice box he felt ready to eat, and then chastised Craig for not breaking his bagel into little bits properly.

The wire is hooked up to a monitor which gives  us some info about the pressure in his head – intracranial pressure. We are hoping to discover what his shunt is doing (or not doing) over the next couple of days. Gav will have to be fairly immobile but so far is handling all of it like a champ.

The biggest task will be to keep him entertained, but with some visits lined up and a bagful of craft supplies from Dollarama, I think we will do okay.

It isn’t great being back on the unit where we once suffered so many sleepless nights, and had so many vomit-inducing conversations with medical staff. I still feel a terrible jolt of anxiety when someone’s monitor beeps off, although I know it’s not my kid who is desatting or whose heart-rate has plummeted far below normal.

My intention now is for a smooth, smooth ride through all of this, with some sort of resolution at the end of it. We just need to know what it is that is at the root of this ongoing problem.

As always, my thanks to my friends and family for prayers, love, positive thoughts. It means so much to know that so many are with us. So many special people have given so generously to us, and for that I am filled with gratitude.

The Plan

Monday, August 26th, 2013

The Gavinator is watching Shrek. He is feeling most terribly yucky today.

We went to the hospital this morning, first to meet with neuro-onc., just cuz, and then for a 10:45 appointment with Dr. Dirks. I thought it a tad ambitious that our contact nurse booked us for a 10:00 meet with them, to supposedly have us downstairs 45 minutes later.

When I have never, ever, got out of cancer clinic in less than 2.5 hours. So I showed up half an hour early. And sat there for over an hour. And then left without seeing anyone to go to the appointment with Dr. Dirks.

The ineptitude and inefficiency of the onc.-clinic process is maddening, but if I allow them to push me over the edge then they win. So I fobbed my son off on a volunteer and sat there on Facebook for an hour. Ha, I win! 

Neurosurgery clinic is a different beast. They book very few patients per day, so you’ve got check-in, a short wait, put into a room, a brief meeting with a neurosurgery fellow and then about ten minutes of face-time with the doctor. Which is exactly how things went today.

So we have concocted a plan. Sort of. Dr. Dirks is not sure exactly what is happening with Gavin’s shunt or how he would like to fix it. Fixing it definitely means replacing it. In order to gather more data, he would like to do intra-cranial pressure monitoring. Ugh, complete ugh.

I am not Googling this type of monitoring because I don’t want to know. I really, really, don’t want to know the risks, the side-effects, all of it. The Internet has not been my friend over the years – there is just too much crazy information out there. I don’t want to have to do this to my son, but I understand the need to do it.

Deep breath, here goes: they need to drill a hole in Gav’s skull and insert a small wire into his brain. They will leave it there for 48 hours while we hang out on the unit. They will see what is happening with his pressure and (please) get some answers.

The question is, when is a good time to do it? Is now a good time, the last week of summer when we are supposed to be on holiday with my family at the cottage? Next week – when he is meant to be starting school? Or the week after, when his Nana and Pop are arriving from Australia!

Dr. Dirks issued instructions to decide when and whizzed out of the room. Craig and I discussed the issue. This week, next week, the week after? Can he hold on that long? I didn’t want to commit to possibly spoiling Gavin’s birthday (8 days away!) or his visit with his grandparents. I thought maybe we could hold on a couple more weeks, and said so. Fine. Craig went back to work and I dragged Bean back up to clinic.

Most of the time, if Gav stays flat he feels okay, but I forgot the stroller and had to carry him upright for awhile. A few minutes after arriving upstairs, we were dashing to the bathroom to barf. The second he was finished, they called him in to clinic. Timing.

We saw the neuro-onc. fellow, he and I chatted while Gav lay palely on the table. I asked to see the staff doctor, only to be told she had gone off on rounds and would be back in an hour or so. Perfect. So we left.

I managed to slowly carry Gavin all the way back to the elevators and down to the car, and hoisted up him to barf in a garbage can in the parking lot. Someone getting on the elevator asked, “Is everything okay?” I almost laughed (or cried, it’s hard to tell which sometimes) but the true answer to that question is so long and complicated that we would’ve been there all day, so I just said, “Yes, it’s fine.”

We arrived home and put Gav back on the couch. He vomited again. I gave him a dose of ondansetron and he went to sleep for a couple of hours.

Somewhere in all of this, I changed my mind about the monitoring. We need to do it now. As soon as we can. I called Dr. Dirks’ office and booked him in for Wednesday, so we will be back on the neurosurgery unit for a few days this week.

Yes, it is not ideal that we will miss our week at the cottage, and his birthday celebration may not be quite as we envisioned. The first day of school may be out too. But we are making the best decision we can given some fairly awful choices.

 

 

Some Answers

Thursday, August 22nd, 2013

This morning started off as it usually does, with my son wandering into my room around 7:00 and jumping into bed with me for a snuggle. As always, I was barely coherent, kicking my way to the surface of consciousness as I got the report on his night’s sleep. His “awesome” dreams, his nightmares, his thoughts. Eventually, he dragged me out of bed and we made our way downstairs for breakfast.

Lately, he has made it through the morning meal feeling okay, has eaten and then is ready to face the day. Today, after he finished his Cheerios, he immediately made his way to the couch and lay down. I feel so sleepy, I need to lie down. I feel like if I walk around I’m going to fall and clunk my head. Words that spiral fear and dread into me. (more…)

Summer of the Mystery Illness

Monday, August 19th, 2013

With the golden light of August streaming through the windows and jacketed cool mornings, yes, we know summer is making its way to the door. There are a few scant weeks left before school is back in full swing, with Gav celebrating his 5th birthday on the very first day.

If it weren’t for the 5-day holiday we’ve just returned from, I’m not sure if I would feel that summer has happened at all. (more…)

Hermits

Thursday, July 18th, 2013

My son and I are being hermits today. We are getting pretty good at it, with Gav lying on the couch and me restlessly prowling around the house.

I can’t say that his health has improved much since my last post. If anything, in some ways, things have taken a definite downward turn.

He did make it to the last day of school, and then had a blissful almost event-free 10 days. Then a bout of motion sickness in the boat at the cottage, a fall and a cranial collision with his cousin, and the next day, a little over a week ago, the arrival of some frightening new symptoms. (more…)

Ups, Downs, Ins and Outs

Tuesday, June 25th, 2013

Here is one thing I’ve learned: when you are asking yourself the question, “Should I go to the hospital?”, 99% of the time the answer is YES. I’m sure there are many doctors who would disagree with me, having had their time wasted by too many kooky hypochondriacs, but in general only good can come from making the decision to go.

So. I’ve had to make the decision to go twice  in a 24-hour period.

Our Three Year Celebration was not quite as I’d envisioned. We went to the cottage for the weekend, and on Saturday Gavin was out-of-sorts and a bit moody. Sunday morning dawned and all was well, but by 11:00 he was sitting on the couch, and the barfing began. (more…)

1, 095

Thursday, June 20th, 2013

Is the number of days that have passed since D-day.

Good days, bad days, awesome days, terribly awfully crappy days. Mediocre days that were completely ho-hum. Hospital days. Days of sunny skies and days of ridiculous freezing Canadian weather. Laughs and fights and fun and learning so many new things. Family, friends, and the wonderfulness of holidays and ordinary kicking-around-the-yard days.  Lying face-down on the bed weeping and wanting to scream from a mountain-top, “WHY ME?” days. Incredible days basking in the wondrous beauty that is our world. Days of feeling so blessed for all the lovely people who love me – yes, you. (more…)