*update* 5 donuts

Hi guys,

It's Sunday afternoon again... is this the weekend? I'm at the hospital in the leukemia computer room and David's a few doors down getting a platlet transfusion. This week was fairly uneventful overall. David's bood counts have been dropping all week which was expected (David created a model to predict his counts - surprise, surprise). As a result David's energy level has been very low and he's not able to get out much. A hemoglobin transfusion on Friday afternoon has perked him up considerably (amazing what blood can do) and he was even able to get out to see his UBC folks at Spanish Banks on Friday evening for a BBQ. A nice change after spending too much time sitting and thinking (a tough week mentally for both of us). He's still feeling pretty good today, although he did mention this morning that his bones felt dead - which I guess is true at the moment. Although we expected the appetite to disappear by now, David's dedicated to trying to maintain his weight. I just left him alone with 5 doughnuts... bet they're gone already.

Not much else to report. Expecting more of the same this week - David's immune system hit rock bottom today and he started a precautionary round of anti-biotic horse pills - so crossed fingers for no infections. We're not sure what comes next - for now trapped in Vancouver - dreaming of home.

Cindy

*update* 2nd round of chemo

Hi Folks,

I thought it might be time to set up email updates to let you know how David's doing. We are finding it very difficult to call/email/see everyone we'd like to and we don't want to leave you wondering how we are doing. I'm hoping to keep up with this update about once a week, but we'll see how it goes. Some of you I talked to recently, so this is kind of a review, but at least we'll all be on the same page from here out. For those of you out of the loop - we haven't forgotten about you! and we appreicate all the messages that keep coming even though we haven't reponded to say thanks.



Trip to the eye specialist to keep him from going blind.

 David's going through his second round of chemo now. They call it reconsolidation therapy. After a number of very difficult moments (stomach and eye infections, fevers, weight loss) during the first round, it was difficult to agree to a second but we know it's for the best. A second round is actually good news - it means the first round did the trick - David is considered in temporary remission now and if all goes well a bone marrow transplant will be in his future.

As for his current round, we expect the chemo to really kick in over the next week. He's currently on outpatient status which is great because it means he's not trapped in the hospital overnight and he can eat normal real food that doesn't look like it's been pre-digested (hospital food's not going to make anyone 'better'). We hope that he'll be able to stay on outpatient status for the full cycle (6 days chemo, 30 days no immune system, 7 days of bone marrow recovery) which will mean daily trips to the hospital for blood, medications, tests etc. If he starts to show sign of infection they'll take him back in - we're hoping to avoid this, but we know it might not be possible. Right now he's doing ok - a bit nauseated, slowly losing his appetite, napping a lot, but still up and around, walking when he can, playing a little rock band now and then :)

As for our last few weeks - David recovered well from round 1 of chemo and we were able to go home together for the first time since we left in January. We were home for almost a week and it was wonderful (ok, there were 3 trips back to VGH in that week, but we didn't mind). David relaxed and I desperately tried to get the yard and house into a more manageable 'away' state. I may just have to embrace blackberry jam this year. We even had Easter dinner at home in Nanaimo with my family, and David's mom flew in at the last minute as well. We definitely weren't expecting to have time at home so we were very happy that the doctors could rearrange David's treatment for a few days so that we could get a break. Mentally the trip back helped us a lot and we now feel like we have the energy to keep going.

So, a rough couple of months to say the least - but we're doing ok. We're very happy to have each other and we know that what we're going though will make us stronger eventually. Until then, thanks to all of you guys for pulling us through :)

Time for a glass of wine in the sun...

Cindy (and David)

*update* easter



View from ferry of UBC/Kits.

Hi guys,

Just wanted to send an update - we kind of lost touch for a while. David's out of the hosptial and doing really well. He was released somewhat unexpectedly just before Easter and we jumped at the doctor's offer to rearrange David's treatment so that we could go home for Easter weekend. David's mom flew in and my sis, brother-in-law and parents joined us in Nanaimo. We really needed to go home for a bit and it turned out to be a great weekend. David felt better and better every day and even regained his appetite. After watching someone struggle to keep anything in for so long, watching him eat and enjoy food was pretty good. Slept in our own bed, woke up to homemade coffee and battled the already out of control yard - what more could we ask for. We enjoyed every minute. David even pushed around the lawn mower a bit, which seem to entertain everyone - I think his mom took 14 pictures of the 'event'.   

Since Easter we've been able to go back to Nanaimo again and spend a few almost normal days. Apparently it's hockey playoff time which kept David busy while project blackberry obliteration and project repaint bathroom occupied my time. The time at home has been a bit bittersweet because David's next round of chemo starts tomorrow - so that means 40 days in Vancouver - 6 days of chemo and about 30 days of monitoring and blood tranfusions. We're hoping the yard doesn't swallow the house up in that time :)

David asked me last night if we were prepared for battle - and I think we are - another round of chemo is hard to think about, but we know it's for the best. David's despertley trying to pack on the pounds (most recently a Big Mac, McChicken, large fries, chocolate milkshake - and I think it was 11 am), but the effort is futile, the chemo will likely cause even more weight loss. Back to meal replacment drinks and toast probably. Good news is that the doctors are going to try and keep him on outpatient status for the chemo, so this would mean daily trips to VGH rather than 24 hours a day trapped in VGH. It'll be hard without the constant care of the hospital, but we hope that David will remain infection free through this round.

After this round we expect a bone marrow transplant will be necessary in mid-June. They are still struggling to find a donor - if you are interested go to www.onematch.ca - but you ca't just be tested to match David - you have to be willing to give to any Jo'shmo. It's a crazy thing - you get a big q-tip thing in the mail - rub it on your cheek - return it in the mail - then into the database you go. They don't even take a blood sample. (I'm not pushing this on anyone, but I get asked lots of questions about how people can sign up to be matched with David)  

Ok, that's it for now. Ski season's over, our cat's disowned us, and we got stuck in a classic Vancouver traffic detour for an hour today - but it doesn't matter. My new skis can wait till next year, the cat will love us again when we feed him and while everyone else in the traffic mess freaked out did u-turns, we enjoyed the sun, commented on how pretty the trees looked and laughed at this crazy world.

Hope to see you, talk to you, email you soon,

Cindy (and David)    

*update* new look

Hi guys,

Thought you'd enjoy a picutre of the new David. Newly out of isolation and now accepting visitors!

If you want to stop by please do. Still at VGH. Still on the 15th floor. Room 460. Phone 604-875-5400 ext 60645. Don't be shy, David's still David. Just a smaller, tireder version.

A few visitng requests:

- If you feel even a bit sick please don't visit. His immune system is still at zero.
- Don't be too shocked - David looks like Gandhi.
- Please keep visits short. 5-10 minutes is more than enough to exhaust the poor boy.
- And, if you can, try to keep the questions about what's next for David to a minimum. As you can imagine, repeating the same thing to friends, family and coworkers is exhausting.

To help with my last request and because I know everyone is curious and concerned, I'll share with you guys everything we know about 'the plan'. Apparently David's treatment is analygous to removing weeds from your front lawn (doctor's analogy, not mine). Anyway, pretend his bone marrow grows grass normally, and that the leukemia is weeds. The chemo is pesticide. So basically the chemo has done it's job and killed the weeds and the grass. Now we are waiting for the grass to grow back, hopefully without weeds. If David's bone marrow produces grass, no weeds, David's in remission.

If he gets to a stage of remission the docs will consider a bone marrow transplant, but that's not on the table yet. We did find out a few days ago that David's brother is not a match, so the doctors are currently searching for an unrelated donor. When I say this I usually get a bunch of questions about getting tested to see if you are a match - it's probably pretty unlikely - but if you are interested go onematch.ca for more info. The site has a lot of info on bone marrow donation, and no, you can't be tested specifically for David. If you decide to go through with it you have to be okay with the idea of some stranger walking around with a bit of your DNA, if you ever match someone.

Protected from everything on the way to the eye doctor.

So bottom line, right now we just have to wait and be patient. Keep sane in this crazy hospital and try to get some weight back on David.

In the meantime we appreciate all the support, positive thoughts, messages, emails, videos, picutres, phone calls that you've sent our way. We read and are enertained by everything, we just haven't been able to respond and thank you all yet!

Cindy

*update* 1st round of chemo



While he still has hair.

First, sorry for the delay in updates. I appreciate the privacy that everyone has given us. This has been a difficult month. As you may be aware, David was rediagnosed with acute luekemia and was treated with an intense 6 day round of chemotherapy 5 weeks ago. The chemotherapy hit David hard and wiped out his immune system, as expected. As a result he unfortunately picked up very serious stomach, eye and skin infections which he has been battling for the past three weeks. They are starting to clear up and he's feeling a bit better now, but he's still very weak. He's started to eat a bit in the past few days, but he's lost about 30 pounds, plus his hair. Considering what's he's been through, his spirit is still strong.

His immune system is still extremely low, but the doctors expect it to recovery slowly. Once his immune system recovers a bit, he may get a small break from the hospital. After so long in the hospital, you can imagine how much he is looking forward to a few breaths of fresh air.

I'm sure there are lots of questions about what's next. We wish we knew. Becasue of the great deal of uncertainty, we really don't know what the future holds right now. Although David had chemo, the battle is far from over. We are currently waiting to see if the luekemia will return. If it doesn't he may be a candidate for bone marrow transplant. Right now we're focusing on day to day battles trying to make sure David gets sleep, eats a bit and walks a few steps.

Thinking of everyone in the office and thanks to those that have emailed. We read everything, we just haven't been up to responding recently.

Hope to see everyone soon,

Cindy

Fresh air. Out there.

the nightmare

Usually I wake up in time. You know the time... when you wake up seconds before it happens. But not tonight. I am awake now, really awake, drenched in sweat, one of his old t-shirts I sleep in clinging to my damp skin. The clock bears 5:40 in that echo of electric green. I can make out basic shapes in the room. A pile of dirty laundry overflowing from the basket. The fish tank, long forgotten but somehow still inhabited with three tiny fish that seem to thrive in the self-sustaining ecosystem I created for them, or more acurately, that they created for themselves. The house is still but not silent. From the bedroom I can barely make out the whirr of the cat fountain that I never remember to fill and that the cat refuses to drink out of anyway. Outside the wind nudges the house, teasing it to lean. I pull the blankets closer around me and flip myself over to the other side of the bed. Reach my arm out to feel for the cat. He's there curled in his bed beside my bed. I'm not alone. I curse the clock. This always seems to happen around 5:40. Too early to get up and too late to salvage a good sleep. I toss and turn finally giving in and getting up to pee. The inky dark of the lowest part of the night seeps into the house, into my bones. I get nervous and rush back to the safety of the warm blankets. Curled under the covers I remember my nightmare. He's gone. And I am here. I stare desperately at the clock... 5:42. The minutes slowing as my life seems to disappear out from beneath me. I don't want to remember anymore.

what's for lunch?

It’s two days later.

An interruption. Spell your name? D-A-V-I-D G-A-U-M-O-N-T hyphen G-U-A-Y. Birthdate? Septembertenthnineteenseventytwo. Ok.

One nurse leaves and the I glance over to watch the other attach a bag of what I think looks like orange juice –orange juice with pulp- to David’s plastic and metal tree of medical equipment . The tree of life? I guess so, kind of. Plump bags are hung like ripe fruit for the picking. A mysterious blend of nectar draining perpetually into his veins to be distributed by his heart. The orange juice obviously isn’t juice, but instead the sticky bits of the blood. I glace up at the write on run off calendar on the wall and notice today’s numbers. The platelets were at 7 this morning. So he needs them



Finally the nosebleed stops.

 I flash back to a month ago when he endured a 6 hour nosebleed. They transfused platlets into him for 4 hours before the bleeding finally stopped and the garbage bin full of bloody soaked gauze and Kleenex stopped increasing in size. That was the first time in my life that I thought I might pass out. The blood just wouldn’t stop and the second David released the latest gauze from his nose a stream of blood would escape making it’s way efficiently down his chin, chasing gravity.




One of many uneaten hospital dinners

A few minutes ago I set off on a journey to select something for lunch that my stomach would accept. I toured around the cafeteria, poked at a few of the sandwiches and debated the option of a tuna salad sandwich with grapes and walnuts. I scanned the ingredients. Tuna, grapes, cherry tomatoes, hard boiled eggs. Wait a second, hard boiled eggs? In a tuna sandwich, with grapes and tomatoes. Um, I don’t think so. Notice I didn’t even comment on the walnuts. Some things just aren’t worth the effort to try and decipher. I continued my search cringing at the idea biting into a sandwich with such ingredients. I stopped briefly at the pre-packaged sushi wondering if the trend towards using brown rice instead of white would catch on. Come on, really, if brown rice sushi makes you feel better about yourself you’ve got bigger issues in life that you should probably be dealing with.

So my options are limited. I walked briskly past the pad thai – only denying it because it was too big, too much food, and I liked it so much I’s eat it all and feel sick for the rest of the day. The Chinese stir fry received the same pass for the same reason and the grill special looked greasy and unappetizing as usual. So, in mid-stride I did an about face. Pushed the up button on the elevator and escaped back into the room. I had a triscuit and consider eating cheesecake that Paul dropped off yesterday for lunch. But I won’t. Bet it would taste great though.

vancouver on pause

Out the window, in the distance I notice a sign. Sandman. It’s green. Beckoning. But I’ve never noticed it before. In my head a phrase repeats. Mr. Sandman take me away. I beg you to. Take me, take us away.

It’s 3am. I’m sitting, perched really, on the edge of the bed, my eyes blurred with sleep. Outside the city seems to be on pause. Still. Shiny and sparkling in the darkness. I search for signs of life, movement, but nothing, not even a car on one of the many bridges that connect a peninsulated downtown to the rest of the world. The city on pause for a moment – a strange thought. While beside me David writhes in sickness. He’s vomiting now.

Still.

I reach over and put my hand on his shoulder and silently encourage my arm to move, to rub his back, to provide him with some sort of comfort. As I whisper – it will be ok – I realize these words seem false and lifeless, but I have to believe, I want him to believe. I say it again. This time to convince myself.

He’s sitting on the opposite side of the bed from me, doubled over, a cytotoxic bucket clutched in his hands. From my vantage point his shoulders blades protrude precariously from beneath the hospital gown. I as I will my arm down his back I can’t help but notice the skin stretched so thinly over ever rib and bone. I resist the urge to run, to throw up, myself. I feel sorry for him, not because he’s sick, not even because he’s violently vomiting in front of me, but because I know he despises the idea of throwing up. The man that never throws up struggling to keep his insides from being expelled into a bucket of toxic waste. This is our reality now. The life we left behind seems distant, a memory too painful to engage. We’ve been here for two months now. Or has it been two years? I’m not sure. Time moves differently here. Moments that I used to categorize into minutes and days used to all line up in a row. But now it’s like moving through time in a haze. Like I show I saw once on driving in the fog. Apparently it’s difficult to judge your speed when your brain can’t disseminate passing objects. Trees, houses, invisible, coated and camouflaged under a wet blanket made up of billions of tiny suspended droplets of water. You rush forward blindly into whiteness with no sense of when you might reach your destination and what you could be missing on the way.

*update* acute leukemia

Hi Folks,

Things are no going well for us. David's disease has rapidly progressed to acute leukemia. He starts chemo today for 6 days. They're going to try and knock the disease down a bit - if it works there may be more options to think about, but right now it's too hard to think any farther than the next 6 days. I know lots of people are wondering how he's doing. I wish I had better news.

His spirits are ok. We're coping ok. We're trying to make the best of every moment, but it's very difficult.

We request no visitors or phone calls. I will not be providing update emails would prefer that a mass email is not send out. I will answer individual emails when I can.

Cindy 

*update* back in hospital

David was admitted back into the hospital on Tuesday morning. It's been a rough couple of days. Lots of tests without answers. He's in surgery now for a lymph node biopsy. We're still hoping the latest is all related to a severe infection that will resolve itself with time.

Trying hard to be positive, but it's more difficult this time. We're also keeping a bit more to ourselves right now - trying not to spread the word that David's back in the hospital - of course this means we have less support - which is harder, but we'll manage. We miss home a lot these days.