A Bean’s Life

Yesterday marked one year since Gavin was released from his stint in the ICU and was able to begin the process of recovery. I remember walking beside his bed as we wheeled him back to his old room on 8B, which was packed to the ceiling with toys and gifts from the Gavinator fan-club.  In a very surreal moment, as we crossed the Atrium, a burst of music drifted up to us from the main floor, where a visiting steel drum band was playing Christmas music. Has there ever been an instrument so full of infectious joy as a steel drum?

On that day, I was content in the knowledge that everything was going to get better. I did not yet know what our path would be, but I had been standing on the edge of the cliff for weeks and weeks, waiting to be pushed off, and somehow, through some miracle, I was walking away from it, holding Gavin’s hand while the steel drum band played.

This year has been a year of healing. For all of us. But we are still trying to figure some things out. I sometimes have a hard time being exuberant about Gavin’s wellness, because I fear bringing ill-fate swinging towards me, and because, sadly, I know too well what a fickle and cruel disease this is.

And yet, I must continue to believe in Bean’s complete health and well-being. I have spent all of 2011 rebuilding it, and to be honest, he is looking pretty good. I was once told by another cancer mama that her son didn’t remember treatment at all, because he had been so young. I could hardly believe it, it barely seemed possible that one wouldn’t remember such a traumatic time. And yet, it is so. Gavin no longer remembers going through treatment at all. He knows that we stayed in the hospital for a time, and he still remembers being there in June for his shunt surgery, but he has no recollection of leaving the hospital last January. I wouldn’t have it any other way.

A couple of weeks ago, we got out the Christmas decorations, and found amongst them the “Christmas tree” that my sister Lauren and her (now) husband Adam made for Gavin last year. It is a flat folding tree with velcro ornaments to be stuck on. Gavin must have put those glittery balls and gingerbread men on 100 times, but when I brought it out, it was completely unfamiliar to him, and he was excited to play with it. I have to believe that if he doesn’t remember something that he loved so much, he would also have a hard time remembering the bad times.

As Christmas approaches, we are getting excited! We have been counting down the days on a beautiful, hand-made Advent calendar that Gavin’s Nana sent from Australia. Our tree is up and decorated, and Bean constantly says, Oh, isn’t our Christmas tree lovely?  We have had many talks about Santa. I have fielded 1,000 questions, and come up with some fairly creative answers too. (If you don’t have a chimney, Santa gets in with his magic key, which opens any door in the world.) Bean and I spent a good part of today making Christmas cookies, and the radio has been tuned to an all-Christmas station for the last few weeks. In light of what happened last year, we are determined to enjoy it this year.

I’m still trying to keep things in perspective. I refuse to get stressed out about Present Buying.  That is not to say that I haven’t got any gifts for Bean – I am looking forward to his shining face on Christmas morning! I just want to keep my eye on the prize, so to speak. The gifts I want for Christmas are: the continued blessing of good health, for Gavin and everyone else I love. Happiness, love, laughter, security, food and drink. Throw in a couple of chocolates and I’ll be satisfied!

Just one more note. I have been reflecting a lot of late on the incredible people who surrounded us and carried us through those horrible months that Gavin was in treatment. We could not have done it alone, we were supported by such selfless family and friends. I can never express enough how thankful I was, and continue to be, for all that you have done. Thank you, everyone!

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. (more…)

Gavin and I, and Bubby and Da went to hospital this afternoon to meet with the neuro-onc team about yesterday’s MRI. I am happy and relieved to report that the scans of his brain and spine came back clear! There is no better feeling than knowing that this cancer has not returned and that I can now shelve that terrible feeling of dread until January. I think the doctor on service was supposed to call me last night – at least, that’s what I understand from talking to our contact nurse. For every other scan, we’ve  heard from the team either by email or phone that the scan was clear, so I was terribly worried that they were bringing us in to deliver the bad news in person. Sigh of relief, all is well. It was a short two-hour visit to clinic, everyone is pleased with Gav and we celebrated with seasonal pumpkin lattes and cookies afterwards.

Such emotional turmoil. On the one hand, I want to believe, truly and with my heart, that all is well, because I know that negativity isn’t helpful. But, then on the flip side, I want to be prepared for the worst, so I can’t help running the various scenarios through my mind, how I will react, what I will say and do. I will be stoic. No, I will fall apart. No, we will fight again and win. Swinging back to positive thinking, I have no reason to believe that Gavin has suffered a relapse, he exhibits no symptoms of such and we are very watchful.

The AT/RT community world-wide is small. I only really know about the children who are treated in North America, and I have been so saddened, of late, by the many relapses suffered by these little fighters. It seems almost weekly that I read of another child who has returned to treatment or succumbed to the disease. And unfortunately, in many cases, these children appeared to be entirely well just prior to discovering the renewed tumour growth. The problem with relapse and brain tumours, is that you very quickly run out of options. Surgery may not be possible again, due to the tumour’s location or size. If a child has received large amounts of chemo and radiation, it may not be possible to go down the same road again, as radiation is not a treatment that is always repeatable, nor is high-dose chemo.

When thinking of all of this starts to wear me down, I choose to focus on the kids who are doing very, very well, and continue to do so years out of treatment. I must remember too, that we are not truly an AT/RT family, we are in this extremely wee group of CRINET kiddos, so there’s not really a lot of data to say how this disease progresses. I must continue to believe that my Gavin will be well, that one day we will be standing proudly at his high school graduation, and university graduation, and raising glasses of champagne at his wedding.

For now, I tell him: You are such a strong and healthy boy. Your pictures looked great.

I love autumn. Flaming fall leaves, pumpkin pie, jack-o-lanterns. As blue skies and sunny days give way to chilly nights, we Canadians celebrate Thanksgiving on the second Monday in October. Like our American friends to the south, the holiday is mostly about stuffing ourselves with turkey and potatoes, minus the Pilgrims at Plymouth bit.

This year, Gavin, Craig and I celebrated Thanksgiving with our family at the cottage. Bubby and Da were there, plus the Vancouver contingent. It was a weekend of spectacular sun and record-breaking warm weather. We hiked through Hardy Lake, canoed, picnicked, and jetted around in the boat for the last ride of the season. And stuffed ourselves with turkey and trimmings. Bean busied himself playing with everyone and carving pumpkin tea-light holders with Bubby.

Flashback to one year ago. We spent our Thanksgiving weekend preparing to enter Gavin’s first round of high-dose, and checked into hospital on the Sunday night, full of fear but also thanks for how far we had made it. Then, as now, Bean proved all the doomsday predictions wrong by sailing through his first confinement in isolation with spirits high. Then, I was thankful for each day and did not look beyond each 24-hour period.

And now, still, I try to keep the meaning of Thanksgiving in my heart and mind every day. I say a prayer of gratitude for all the gifts I have, for the Earth that sustains us and gives us life, for my son and husband. I am so thankful to be a young, healthy woman. For family and friends. I am filled with gratitude to have been born in a country that gives me the freedom and power to vote, work, own property, drive, and wear a short skirt should I bloody well choose to. I am eternally, eternally grateful for universal healthcare. So thankful that never in the midst of our pain and suffering, did we ever have to think, how the eff are we going to pay for this? (A reminder to Canadian taxpayers, yes, we get walloped, but think about your contribution more in terms of saving children’s lives. Feel better?) I am thankful for what wealth we have, although in our culture, it is hard sometimes to feel that you have “enough.” I am even thankful for my mutant genes, for making me who I am, and for making Gavin who he is too.

I also want to thank all of you. The people who read this and continue to pray for us and hope with us. The friends, known and unknown, who have made the difference to us in this journey. In recognition of those who have helped us along the way, I’m starting a “We Thank You” page on the blog and will be adding people’s names as I think of them. I also want you to know that Gav’s MRI is tomorrow morning. He goes into the machine at 8:00. Join me in visualizing a clear and clean scan. I hope to add another thing to be thankful for to my list tomorrow evening.

What do you give thanks for every day?

G:  Hi, I’m back from the wedding!

Me:  Oh, that’s nice. Whose wedding was it?

G:  Mine, actually.

Me: Oh really? Who did you get married to?

G: Oh, I just married myself.

(With arm stuck down the side of the couch)

Help! The couch is eating my arm!! Somebody call the police!

A typical exchange between Gav and Daddy when Gavin is “fixing” something with his tools:

G: Thank you, I need the measuring tape! I’m going to measure it.

C:  Where do we need to make the cut? We want it to be about four inches.

G:  I’ll do the cut with my saw. There. And then I drilled it.

C:  Which tool do you need? I’ll put the screwdriver in your pocket.

G:  I think it’s not going to last. But I’m going to make sure. (Climbs ladder to “fix” something.) It’s not the right length again.

C:  Okay, we better cut it again.

G: Okay! (Climbs down the ladder again and “cuts” the wood with his saw.)

I have spent a lot of time over the last year or so contemplating brains. There is something very circular in using the organ that creates thoughts to have thoughts about brains. Just think: these command centres of ours are in our heads, getting feedback from and sending messages to all the trillions of cells that make up our bodies. Moment to moment, our brains are processing information, making sense of our world, making judgements about everything we see, hear, smell, taste and touch. This is malodorous, this is beautiful, this taste is gag-worthy, this song thrills the very essence of me. The judgements we make are completely different from those that someone else makes. Our brains are all incredible, and incredibly unique.

This uniqueness gives us our gifts: one person has an excellent memory, another a true gift as a painter, another is a violin prodigy, another can tell a hilarious joke. You may be saying to yourself, I seem to have been overlooked in the gifted department. Yeah, well. Most of us have. Most of us will not be winning Olympic medals, directing Oscar-nominated films or hatching plots for world domination.  We are just normal folk, going about the daily business of our lives and largely ignoring our brains.

But if something should go wrong in the command centre – that’s when we suddenly pay attention. Our brains are so fragile. We are so vulnerable to head injury, strokes, chemicals, tumours. When I suspected, pre-diagnosis, in a very deep-rooted place, that something terrible was the cause of Gavin’s illness, the alarm bells that went off in my own system sent me into a panic. I have made a certain peace now with the fact that Bean has had a tumour. In the early days though, it was the fear of the unknown that ruled me. How would he fare post-op? Would he speak to us? Would he ever be the same? Would his chemo treatment have irreversible effects on cognition? The stats and information that we found were not cheering. In fact, they were downright dire. The medical team prepared us for the worst with pessimistic efficiency.

It would have been very helpful for me if, in those early days, there had been someone who had given me some hope for Gavin’s full recovery. Someone to help me understand just how adaptive and malleable the brain is. Oddly enough, the only person who gave me that hope was a reiki practitioner named Claudia, who urged me to consistently believe in Gavin’s complete wellness. I now believe, as do many in the medical community, in the neuroplasticity of the brain. This means that your neurons are not hard-wired for life. Our brains have an immense capacity to grow and evolve, even into old age. But like any other part of the body, if you want to strengthen your brain, you have to work at it.

I have been so personally inspired by a book called My Stroke of Insight by Dr. Jill Bolte Taylor. It tells of her long and successful struggle to recover the full function of her brain after a massive stroke that left her without the ability to speak, understand speech, read and walk. Through enormous effort and perseverance, and with the support of family and friends, she eventually made a complete recovery, although it took many years. She tells her story simply and without self-pity, as the experience revealed to her the fundamental natures of the hemispheres of our brains and left her with a lasting peace and feeling of connectivity. (Please watch Jill’s TED talk, it cannot fail to move you.) The book also details the best method of helping someone who has suffered a brain injury, it’s invaluable reading for the families of post-op or post-stroke patients.

Now. With our Bean, we were told that Gavin would most likely have learning disabilities, the severity of which were impossible to predict. The numbers and data we were given were enough to make Craig and I break down on many occasions, as we grieved what we thought had been lost. I feel I should mention that both my husband and I were smarty-pants kids in school who always did pretty well without making a massive effort. I am actually a bit dim but smart enough to hide my (math) deficiencies from the world.  I realize now, of course, that if Gavin should acquire learning disabilities, our world will not come crashing down around us. We have amazing resources at our fingertips in Toronto, and we as a family have worked hard with him every day to keep him on track and at the same level as his peers.

At the moment, we have no reason to be concerned about Gav’s cognitive development, but we are very watchful.  He can count, (except the number 15 for some reason) can identify all the letters of the alphabet and is learning to read. He has a vivid imagination and inner life. (All those hours of creative role-play in isolation, thanks to Bubby.) He loves books, painting and drawing, cooking and fixing things with tools. He is a very thoughtful and observant kid. Not much gets past him. Our work for his little brain is to help him make some more physical connections. He is much sturdier and more agile than he was after his most recent surgery in June, but he still needs to work hard, and needs constant encouragement to do so.

Further reading and resources:

The Brain That Changes Itself by Dr. Norman Doidge

http://www.arrowsmithschool.org/ – The organization founded by Barbara Arrowsmith Young, who discovered methods to overcome her own profound learning disabilities.

http://www.scilearn.com/

Bad Schwarzenegger jokes aside, the good news is that my MRI came back clear. Apparently, my brain looks normal. My spine looks alright too, except for a bulging disc in my back which is causing me absolutely no pain. I see a visit to a chiropractor somewhere in my future. Just glad that it’s not a neurosurgeon.

So. Big sigh of relief, no news is good news, and on we go.

A huge milestone last weekend. On Saturday, September 3rd, Gavin celebrated his champagne birthday and turned 3. To say that we are happy is somewhat of an understatement. I am, as always joyful and grateful for the presence of my little boy in this life.

The celebration was quiet and low-key, with just the five of us at the cottage, Bean, Craig and I, Bubby and Da. I spent a large part of the day sweating over a “construction site cake” that I’d decided to bake in a moment of delusional insanity. Baking and cooking are not amongst my natural skill set. I almost lost it when my whipped cream icing refused to whip and started oozing liquid for some mysterious reason, but eventually triumphed and produced an edible result.

Bean spent the day opening prezzies and playing with them, with each new gift obliterating the memory of the last one. Craig and I, (with help from Nan and Pop) bought him a very cool balance bike, which unfortunately was over-shadowed by the arrival of a new digger from Bubby. When I asked him later on what he got for his birthday, he shouted with glee, I got a digger!!!  I kind of thought the bike would be the main event, but there you go. Most of the gifts were construction themed, as that is the general theme of  our lives lately. We spend a lot of time at “the building site” (giant reno project) across the street watching the Bobcat do its thing. A couple of weeks ago a roller appeared on our street for a patch job and I thought Gavin would explode with excitement.

For the last couple of months, I have had this amazing strategy in place whenever Gavin chucks a fit asking for something at a toy store, etc. I kept a small notebook handy, and then added his requests to “the birthday list.” This has been pure gold. The act of writing it down completely appeases him, and we all walk away happy. And he forgets half the stuff he asked for. The main items though, were: digger, crane, roller, green dump truck, cement mixer and Curious George books. He ended up with most of those things, as he will be terribly spoiled for the rest of his life.

Although we had a great day, I have to admit that the birthday celebrations were dampened somewhat for me by a vague feeling of anxiety. I am always vigilant about Gav’s health. Any slightly higher temp or runny nose sends me in to a tailspin. We got a higher than average (but not feverish) temp read on Friday night just before leaving for the cottage, and I started to mentally go through the checklist that could indicate shunt failure. Nausea, no. Lethargy, no. Irritability, no. We are still in the six-month grace period in which shunt infection is a very real possibility, and every cell in my body screams out against it. I cannot stand to see him knocked down again, especially when he is doing so very well right now and has made such huge strides. So no obvious symptoms apart from the fact that his shunt incision looked quite red, but it faded again a day or so later. He was cheery and seemed fine, but I couldn’t shake the sense that something was wrong. I know that feeling this way is normal for mothers who have been down this road, we have a hard time reacting in an appropriate fashion when something happens to our kids. But we have been in a place where a minor fall could be fatal, bruising means a transfusion, a tickly cough can send you to the ICU. Those memories and experiences are clearly effecting the way that I operate, but I acknowledge that and am doing my best to get past those hurdles.

On a cheerier note, Bean started a preschool program this week. On the recommendation of a couple of friends, we visited this little school which is called The Artful Child. The program is arts-based, (obviously) and is only mornings for the days that you prefer. To start we will be doing two days a week. I was nervous to leave him on the first day, but we had talked about what he could expect ahead of time. Their process is to have new parents sit on the couch and disengage from their kids while they explore. It worked like a charm – Bean was so busy checking out the painting table and toys that he completely ignored me. When I told him I was leaving he just gave me a hug and kiss and did not shed a single tear! Brave boy. Today worked just as beautifully and I found myself alone for awhile in the house for the first time in ages.

I am now experiencing at the three year mark what most Canadian mums feel when they go back to work after their year of mat leave and put their children in daycare. Your kid is now out there, having his own experiences and interactions of which you have no knowledge. I love getting the after-school report: We had milk and cookies or We sang songs and we sang everybody’s names or I didn’t do any gluing today but I made a painting. My big boy.

Ah, Camping. Waking up to a brilliant sunrise. Finding the perfect marshmallow stick. Swimming in a waterfall. Kicking around fashionably in sandals with socks. Not to mention, reeking of campfire, eating foods which may or may not contain dead bugs, and having to deal with rowdy neighbours who want to part-ay like they were you fifteen years ago. Like everything in life, highs and lows. (more…)