This day ... I can honestly say ... has been a life altering experience ... not only for Chris but for me too.
The support that we have gotten the last few days has been overwhelming and has felt like a 100,000 hugs - just what we needed. The news of Chris is the stuff that makes people believe in miracles.
On Wednesday, I spoke with Dr Mendez, the neuro specialist and neurosurgery division head, who is working with the neurosurgery team. He is a researcher in the head injury unit and very interested in stem cell work! In his career, to date, he said that he has seen over 700 cases like Chris' with a massive bleed out and Chris is 1 of the only 2 people who has survived! - He was very keen to show us the comparative CT scans: CT before surgery and after surgery. You could tell that he was practically giddy over Chris' case! Academics like him love things like this because he knows he can make our hope turn into the future.
The hemorrhage started from an episode of hypertension that Chris had during the 10km race. (Remember, I thought he looked flushed and he said “I was rather red”.) He thinks Chris’ BP was over 180 and this caused a bleed by the basal ganglia. The blood seeped into the surrounding tissue to the right temporal lobe and parietal lobe and at some point (early on) broke into the ventricle - this saved his life because it reduced the pressure immediately.
This is why the CT scan in Truro looked so bad. And yet the second CT scan done 12 hrs later didn't look any worse and actually a little better - this is when they realized that this was not an ordinary bleed - there WAS hope - the CT scan showed no anersyms or AV fistulas - so they went in and took out the blood clot (which is being sent for histopathology).
He is fighting so hard. Not only did he squeeze the nurses hand and follow directions, he flexed his LEFT leg and extended his LEFT arm!
The follow up CT showed a vacancy at the basal ganglia so there will be neuro deficits but he could function and stem cell therapy may be the long term answer. With basal ganglia damage we may expect movement changes, such as: involuntary movements, slowed movements, increased muscle tone, muscle spasms and muscle rigidity making it difficult to walk. Also: memory loss, problems finding words, tremor, uncontrollable, repeated movements, speech, or cries (tics).
From what I understand, the memory and speech, for most people are on the left basal ganglia (the dominant side) so with any luck, these functions will be intact. My mind is swimming with all the amazing news. Joy and fear make a whirlwind in my mind. What if Chris isn’t like “most people”. For those that know him, you know that in many ways, Chris isn’t like “most people”. He is right handed, but bats left (is that a natural talent? Or did he work hard at making it happen?) Chris’ father, Dick, is left handed – what if Chris has a special mind that is a jumble of right and left. He isn’t and will never be like most people as proven by the events of this week.
I am still scared. I think, I can see a way past motor control problems (rehab treatment, Annie, our large family dog, could be trained as a service dog to give him balance when walking – if he can walk and if he can’t; we will get chairs and I’m sure there are many devices that can help).
But if he has no memory and speech problems, the children are going to be lost. Children make so many memories seem clear, vivid and real. For me, all events, personal are tied to the children and their development. Their births, the first smile, the first sit up, the first crawl, walk and climb, the first tooth, first hair cut … All events worldly since 1999 are tied to the children. I know what year 9/11 was because, as I watch the events of that day unfold – I was pregnant with Quinn, and Tara was 18 months, by my side wondering why I was crying on such a beautiful sunny day. So much of us is about the memories.
Chris always prided himself on his memory. We have had many disputes where I said or did something and he says that I didn’t. These conflicts would usually end with me saying (but not really believing) that he was right and I was wrong. Those disputes used to annoy me – now I crave for it to happen – except now I would be thrilled to admit AND believe that he was right and I was wrong.
Wednesday morning, I found one of our family cats, Scroggins … collapsed on the bathroom floor. Oh No – what is happening – the children were there, they see it and comment with scared undertones that “It’s just like Daddy”. Without thinking, I scooped him up into my arms – he’s warm but very weak. I say to the children “he’s very sick and needs to be in the hospital – I’m going to rush him there where he’ll get the best care he can have.” Oh no, did I just say …best care he could have? … the familiar phrase race through my lips before I could think … That’s what I said when the children and I were at the hospital on Monday night – the surgery night … don’t worry, “Daddy is getting the best care”.
At the hospital, Chris went back into surgery - he was in pain and the intracranial pressure increased. Narcotic pain relief helped but to be sure - another CT was done - it indicated increased pressure was due to fluid and the Drs felt a drain would be a good precaution - the good news is the fluid that came out was clear cerebral spinal fluid - no blood.
Although in a lot of pain - he gave me a weak thumbs up with the right hand ... little signs - big hope.
Late in the day Scroggins died. He had a bowel rupture and peritonitis, very odd finding – no foreign body that did it, was it trauma? He did go outside, what if I found him sooner? It occurred to me that given the state of his peritonitis – it probably started about the some time Chris’ condition did. Was Scroggins a sacrifce for Chris in some round about werid way? Scroggins was a cool cat, He and Annie got along great – right from the start – they are about the same age. He would steal dish cloths and stash them by the litter box, once we came to an understanding about that thanks to a treated dish clothes with cajan spices, he moved to hand towels. That was last winter – he was an indoor cat –this spring he decided that he needed the outdoor life – that stopped the towel frettish.– Oh I can’t spend time on these thoughts – I have a race to run – for Chris – But what about the children … what do I tell them when they ask about Scroggins?
Thrus Sept 3,
Early this AM I have a dream, I see a image of Chris standing carefully, a little bent over and shaky, we hug – the hug feels a little different – but it feels good. He is talking – a regular chatterbox – like Tara is when she’s excited … GOD let this part be true.
I’m woken from the dream by a banging downstairs. It’s 6 am and Marion (Chris’ Mum, but the kids and I call her Dee Dee) is trying to open the sliding door for other cat, Himmy. (Chris always kept it jammed with a stick – He always wanted our home to be safe).
This cat, Chris befriended single-handedly using food – lots of food – I think Himmy (as Chris called him) was the best-fed cat in Truro. Himmy was befriended by Scroggins first – scroggins brought him home and that’s when Chris befriended Himmy. Himmy was very nervous of people, but slowly over the winter Chris made friends and now he sleeps indoors and bosses Annie about. Thank God it wasn’t Himmy that died.
Marion is up at 6 am, The hours she is keeping are going to take their toll. I fear the outcome. I know she’s a mother and understand her distress. Rationally, I know I have to pace myself. She is sprinting ahead in the marathon – she’ll hit “the wall” and then she won’t be able to be there when Chris most needs her. (Oh please, Give her the strength to endure and the wisdom to slow down.)
It’s the first day of school, Quinn is still asleep – I’ll let him sleep – he can go in when he is ready – he always needed more sleep the Tara. Tara spent the night at her best friend’s, Madeline, house. She took the bus to school. I walked to the school by myself – it helped clear my head. Wow – the circle of support was evident before I walked in – people asking after Chris – what’s the news? Hugs, hugs and more hugs.
I check on Tara in her class, it’s started already. I interrupt and told Tara I needed a hug, she gave me one and I joke to the class that it was fun to embarrass her in front of her class.
I talk to the school psychologist, I tell him or the events of the week to date and about Scroggins and my worries about what do I say if the children ask about him. I share with him my plan – I don’t trust my instincts now – I need validation – don’t let the kids connect the two events any more then possible. Try to stall telling them about the death until after school on Friday, that will separate the two events so the connection seems less obvious. OK now I have a plan – I can do that.
I walk home, feeling a little better about the situation – plans empower me. Quinn is up and feed and dressed and eager to get to school. He’s happy and sings a crazy song as we walk to the school. As we get closer, his mood slowly changes. He says, “I’m a little nervous about going to school”. I ask what is he worried about – he doesn’t know – I probe deeper – He had met his new teacher on Wed and really liked her, and he has many friends in the class. What is it Quinn? – “It’s my journal – it’s too long”.
Last June his grade 1 teacher gave him a journal to keep over the summer to document the summer vacation. He dedicated himself to the journal, it traveled to Newfoundland, Cape Breton, Moncton and a few beaches. He had 16 pages in his journal. (His goal was to get 29 pages – Chris’ favorite number). On Sunday he was working on the 17th page. “I am playing with my uncle and my Daddy is sick…” the sentence is not finished. I realized the journal is really not TOO long – it’s not long enough – he needs to finish it.
I get Quinn into his class and set off to Halifax – the visit is good – Chris is in an induce coma (heavily sedated) to allow the brain swelling to go down. The pressure is good and no bleeding for the drain – Thank God. I’m relaxed in the room – My sister, Fran and brother-in-law, Luiz came with me. I don’t trust myself to drive (since moving into town in 2005 – I have become much less of a driver – more of a walker and biker – with the erratic sleep I know my limits …I think.) Watching the numbers on the machine give me comfort the numbers are good: BP is good, intracranial pressure is great and Chris slow heart beats away at it’s usual 45-50 beats a minute. I feel comfort. He is unconscoius. The nurse is monitoring his pupils only – no thumbs up today but that’s OK he is not in pain and I know it will take time – sedation is the best thing.
Fran tells me about the Hope Run set for Friday at 6:30 at the Centennial Pool ( this was where Sundays race began and finished) - The touched tears flow - Fran and I hold each other.
I start thinking about Chris and his running. He had a running streak going for many years – he ran every day. He ran through rain, snow and hurricanes. He ran through shoulder surgery, hernia repair (he’d argue this point – because technically he walked for a few days after the hernia surgery and on the day of the first run after his surgery – he started counting again at 1). He ran on the days Tara and Quinn were born. He is a running addict.
I know, he could be healed if he know people ran for him. Especially, if people took the challenge to run for him every day of his convalescence. If we could do this for him starting tomorrow – I KNOW it will inspire him to overcome the challenges that lay before him.
Tara asks about Scroggins, I stall and tell her that Scroggins is still at the hospital and there is a problem with his gut – a very different problem then Daddy’s brain. I didn’t lie – I just didn’t give full disclosure – I think that’s OK – it’s like when you are asked about the tooth fairy or Santa Claus – Are they real? – YES they are real if you believe in them.
Tonight after dinner, Chris’ family spent some quality time writing messages of love on a cloth that we will attach to the Magic blanket. This was Tara’s suggestion. She felt we should not write directly on the blanket because Daddy wouldn’t like it – and she is probably right. She felt in some small way, writing on the blanket may affect the magic. Magic is a Mysterious thing – You don’t mess with it.
The marathon continues. Deep breath – be strong.
These are the Doctors looking after Chris – Please sent them positive thoughts – to inspire their minds to help Chris.
G Ivar Mendez, MD, PhD, FRCSC, FACS
Professor & Division Head
Dan McNeely, MD, FRCSC Surgeon
Assistant Professor & Program Director
Simon Walling, MBChB, FRCSC Surgeon