Last Night in Hospital?

Tonight is Wren's last scheduled night at BC Children's Hospital. It could be the last night Wren spends in hospital for a very long while. Seems hard to believe after fifteen and a half months of treatment that we are nearing the end.

 

Wren has been feeling good and relatively energetic (these photos are from Round 4 which was a little more difficult). We expect that she will be discharged tomorrow morning and may even fly home tomorrow night.

Thank you for all of the supportive thoughts and wishes. They keep us strong.

Last Night in Hospital?

Tonight is Wren's last scheduled night at BC Children's Hospital. It could be the last night Wren spends in hospital for a very long while. Seems hard to believe after fifteen and a half months of treatment that we are nearing the end.

 

Wren has been feeling good and relatively energetic (these photos are from Round 4 which was a little more difficult). We expect that she will be discharged tomorrow morning and may even fly home tomorrow night.

Thank you for all of the supportive thoughts and wishes. They keep us strong.

Last Round of the Antibody Research Trial

Paula and Wren flew down to Vancouver tonight to begin the last round of the antibody research trial. They just phoned from the hospital to say that they have arrived and are getting settled into a shared room, which means that the cancer ward is full. As you may have read in an earlier post, it is difficult to rest at night as there are often many interruptions. With two patients' monitors beeping and bonging all night long, it will make sleeping nearly impossible for Paula. Wren will may get some rest owing to the sedatives that she will receive to reduce the pain caused by the antibody.

What an amazing day today. The sun's energy seemed particularly potent and the whole family soaked it in on the sun deck while chickadees scattered sunflower seeds an arm's length away.  Undeterred by two feet of snow remaining in the yard, the girls pleaded for rides in the swings.

We've been collecting sap from the maples in the forest near our house and making maple syrup. It takes a lot of work, about 6 or 7 hours to make one litre of syrup, but the end result is really quite delicious.  So far we've made nearly 3 litres of syrup from about 120 litres of sap. There is almost 200 litres of sap from 95 trees ready for the next firing of the evaporator in a few days time. The whole family is involved and we all head out to gather the sap every couple of days. Then the girls scrabble around the yard riding bikes or getting wet sticking their heads under the downspout of the eaves trough while I tend the evaporator.

If all goes well, Wren and Paula will be home next Saturday. About two and a half weeks later, we will return to Vancouver for Wren to get her central line removed. Her central line is a pair of tubes through her chest and into her veins that allow for blood work and I.V. medication without needles. She has had a central line for 15 month now, and she has not been able to submerge her body in water for that time. A few days after her central line is removed, the Make-a-Wish folks will fly us to Hawaii and Wren will be able to swim for the first time in a very, very long while.

Last Round of the Antibody Research Trial

Paula and Wren flew down to Vancouver tonight to begin the last round of the antibody research trial. They just phoned from the hospital to say that they have arrived and are getting settled into a shared room, which means that the cancer ward is full. As you may have read in an earlier post, it is difficult to rest at night as there are often many interruptions. With two patients' monitors beeping and bonging all night long, it will make sleeping nearly impossible for Paula. Wren will may get some rest owing to the sedatives that she will receive to reduce the pain caused by the antibody.

What an amazing day today. The sun's energy seemed particularly potent and the whole family soaked it in on the sun deck while chickadees scattered sunflower seeds an arm's length away.  Undeterred by two feet of snow remaining in the yard, the girls pleaded for rides in the swings.

We've been collecting sap from the maples in the forest near our house and making maple syrup. It takes a lot of work, about 6 or 7 hours to make one litre of syrup, but the end result is really quite delicious.  So far we've made nearly 3 litres of syrup from about 120 litres of sap. There is almost 200 litres of sap from 95 trees ready for the next firing of the evaporator in a few days time. The whole family is involved and we all head out to gather the sap every couple of days. Then the girls scrabble around the yard riding bikes or getting wet sticking their heads under the downspout of the eaves trough while I tend the evaporator.

If all goes well, Wren and Paula will be home next Saturday. About two and a half weeks later, we will return to Vancouver for Wren to get her central line removed. Her central line is a pair of tubes through her chest and into her veins that allow for blood work and I.V. medication without needles. She has had a central line for 15 month now, and she has not been able to submerge her body in water for that time. A few days after her central line is removed, the Make-a-Wish folks will fly us to Hawaii and Wren will be able to swim for the first time in a very, very long while.

Oolichan

Acting on a tip from friends, we decided to drive to Prince Rupert on Friday afternoon to see the oolichan run on the Skeena River. This four hour drive traverses spectacular scenery and covering this ground evokes an upwelling reverence, the land is so intensely wild and beautiful. It's the landscape of my youth, I recognize that I might be a little biased.

Oolichan, or candle fish, are small, sea-run smelt that are harvested by coastal First Nations. For generations people have rendered oil from these fish and traded this valuable food to interior nations along well-established trade routes called grease trails. Some of these trails are today's highways, and Highway 16 (that took us from Smithers to Prince Rupert) is probably one of those.

About 100 km west of Terrace we encountered thousands of sea birds and hundreds of eagles, a sure sign that the oolichan were in the river. Misty puffs of breath alerted us to the presence of Stellar sea lions drifting down stream, enormous and a little frightening. Seals were also in the river enjoying the feast.  It was a brilliant display of an amazing natural event, especially powerful in light of the progressive loss of oolichan runs all along the coast.

We enjoyed sun and warm weather in Prince Rupert and watched the sun setting over Digby Island from the hotel window.

In the morning we drove back to Smithers, stopping to watch some guys bring in nets of oolichan. We made a campfire and cooked hotdogs just east of Terrace, on a gravel bar just down from the confluence of the Copper and Skeena Rivers. My family used to camp near here when I was a kid. Wren and Chloe scrambled around on driftwood while Paula and I searched for the perfect rock(s).

The girls wanted to catch a fish, so I set them up with rods and they flailed the water for a while. Then we headed for home.

It was a great little trip, but Wren was glad to be home again. Once through the door, she embraced the door frame, giving the house a great big hug. She has been away too much and loves to be home. Alas, we head down to Vancouver on Thursday for tests, and the next round of treatment begins on Sunday night. This round is the last, or at least that is our hope. Of course, it is impossible to know.

We have recently learned that the Make-a-Wish Foundation has granted Wren a wish, and they will be sending us to Hawaii for a week in April. More on that and other stories soon.

Oolichan

Acting on a tip from friends, we decided to drive to Prince Rupert on Friday afternoon to see the oolichan run on the Skeena River. This four hour drive traverses spectacular scenery and covering this ground evokes an upwelling reverence, the land is so intensely wild and beautiful. It's the landscape of my youth, I recognize that I might be a little biased.

Oolichan, or candle fish, are small, sea-run smelt that are harvested by coastal First Nations. For generations people have rendered oil from these fish and traded this valuable food to interior nations along well-established trade routes called grease trails. Some of these trails are today's highways, and Highway 16 (that took us from Smithers to Prince Rupert) is probably one of those.

About 100 km west of Terrace we encountered thousands of sea birds and hundreds of eagles, a sure sign that the oolichan were in the river. Misty puffs of breath alerted us to the presence of Stellar sea lions drifting down stream, enormous and a little frightening. Seals were also in the river enjoying the feast.  It was a brilliant display of an amazing natural event, especially powerful in light of the progressive loss of oolichan runs all along the coast.

We enjoyed sun and warm weather in Prince Rupert and watched the sun setting over Digby Island from the hotel window.

In the morning we drove back to Smithers, stopping to watch some guys bring in nets of oolichan. We made a campfire and cooked hotdogs just east of Terrace, on a gravel bar just down from the confluence of the Copper and Skeena Rivers. My family used to camp near here when I was a kid. Wren and Chloe scrambled around on driftwood while Paula and I searched for the perfect rock(s).

The girls wanted to catch a fish, so I set them up with rods and they flailed the water for a while. Then we headed for home.

It was a great little trip, but Wren was glad to be home again. Once through the door, she embraced the door frame, giving the house a great big hug. She has been away too much and loves to be home. Alas, we head down to Vancouver on Thursday for tests, and the next round of treatment begins on Sunday night. This round is the last, or at least that is our hope. Of course, it is impossible to know.

We have recently learned that the Make-a-Wish Foundation has granted Wren a wish, and they will be sending us to Hawaii for a week in April. More on that and other stories soon.

Winter Wren

Winter Wren

This jumble of protein and water

Embodies October exhaustion—

Spawned out salmon,

Heap of moldering leaves—

Following months heavy with fear

Of losing you.

No winter reserves,

January brings more darkness

Than remembered,

Another test for tenuous bonds

Linking mud, water, air,

Cells, organs,

Families, communities.

A single wire too often bent,

Breaks.

These four woven strands

Are tempered by flames

From countless candles.

On the forest trail,

The flick of a tiny wing.

A messenger hides

In a tangle of branches

Smashed by recent wind.

Stillness.

Then long melodious trill.

Winter wren.

If you read this,

When you read this,

I will sleep.

Winter Wren

Winter Wren

This jumble of protein and water

Embodies October exhaustion—

Spawned out salmon,

Heap of moldering leaves—

Following months heavy with fear

Of losing you.

No winter reserves,

January brings more darkness

Than remembered,

Another test for tenuous bonds

Linking mud, water, air,

Cells, organs,

Families, communities.

A single wire too often bent,

Breaks.

These four woven strands

Are tempered by flames

From countless candles.

On the forest trail,

The flick of a tiny wing.

A messenger hides

In a tangle of branches

Smashed by recent wind.

Stillness.

Then long melodious trill.

Winter wren.

If you read this,

When you read this,

I will sleep.

Make a Wish

We just had a meeting with the good people at the Make-a-Wish Foundation. The kind fellow asked Wren what her wish would be.

We all held our breath.

Then came her answer: "My little pool with sand on sundeck."

She wanted us to fill her kiddy pool with sand and put it on the covered deck for her to play in.

So much for a trip to a warm tropical beach. Ah well. 

Yet another reminder to live in the moment and to enjoy life's simple pleasures, a sandbox on a snow-free sundeck.

ps. a trip to Hawaii may qualify as a second-best-wish.

Make a Wish

We just had a meeting with the good people at the Make-a-Wish Foundation. The kind fellow asked Wren what her wish would be.

We all held our breath.

Then came her answer: "My little pool with sand on sundeck."

She wanted us to fill her kiddy pool with sand and put it on the covered deck for her to play in.

So much for a trip to a warm tropical beach. Ah well. 

Yet another reminder to live in the moment and to enjoy life's simple pleasures, a sandbox on a snow-free sundeck.

ps. a trip to Hawaii may qualify as a second-best-wish.

Epic Journey Home

We are home again, after an ambitious journey involving all possible means of transportation and multiple low-hemoglobin melt-downs. I'll explain.

Yesterday morning we woke early at Grandma and Papa Georgio's house at Union Bay, Vancouver Island, so that Wren could eat breakfast six hours before her scheduled blood work. The blood work required a six hour fast, so we thought that if she ate early enough we would be okay. Then Grandma Carol drove us to the Departure Bay ferry terminal and we walked on to the Queen of Cowichan. Wren associates BC Ferries with hotdogs, so we endured 2 hours of pleading and crying for hotdogs, which effectively cleared our section of the ferry of other passengers (so much room!)

Next we got on the Horseshoe Bay Express, a big articulating bus that races along the Upper Levels Highway to downtown. The bus was packed, and I (with Wren on my lap) was fortunate to wedge onto half a seat next to a very large and extroverted world traveler who entertained the entire bus with his life story. The girls were temporarily quieted and Wren began to doze just as we arrived at the Choo-choo High Station (the Georgia Street Sky Train). With car seats, stroller, back packs, Dora and Tinkerbell suitcases, and various other baggages in tow, we elevatored and escalatored down into the earth and boarded a Choo-choo High for the King Edward Station, the one closest to the hospital.  Back in the sunshine, we trundled our impedimenta 1/2 km to the BC Children's Hospital and disgorged into the oncology clinic waiting area.

Wren's blood work showed low hemoglobin, which explained the rash of recent irrational outbursts, but was high enough for us to continue without a transfusion. After meeting with our doctor, we grabbed a cab and headed for the airport, with a stop-over at the Little House to retrieve our remaining items that were jettisoned for our "alpine style" excursion to Vancouver Island. It took several tries to find a configuration that would allow all four of us and our belongings into the Toyota Prius taxi.

Poor, tired Wren was outraged about the seating arrangement and screamed for the entire trip to the airport, ensuring that the driver fully earned his $45 fare. "Goodbye Little Troublesome One" he said upon departing.

Then the flight, which went mercifully well with only a few minor outbursts. Nadina Mountain peaked through a foamy sea of cloud and we knew that we were nearly home. Finally we reached the Smithers airport where our old Rav 4 was waiting for us, and shortly we were home again, girls squealing with the excitement of rediscovery. I could barely stand, worn down by the day's many trials, as we tucked two tired little ones in bed. They soon fell asleep. Paula and I were not far behind.

It is great to be home.

Epic Journey Home

We are home again, after an ambitious journey involving all possible means of transportation and multiple low-hemoglobin melt-downs. I'll explain.

Yesterday morning we woke early at Grandma and Papa Georgio's house at Union Bay, Vancouver Island, so that Wren could eat breakfast six hours before her scheduled blood work. The blood work required a six hour fast, so we thought that if she ate early enough we would be okay. Then Grandma Carol drove us to the Departure Bay ferry terminal and we walked on to the Queen of Cowichan. Wren associates BC Ferries with hotdogs, so we endured 2 hours of pleading and crying for hotdogs, which effectively cleared our section of the ferry of other passengers (so much room!)

Next we got on the Horseshoe Bay Express, a big articulating bus that races along the Upper Levels Highway to downtown. The bus was packed, and I (with Wren on my lap) was fortunate to wedge onto half a seat next to a very large and extroverted world traveler who entertained the entire bus with his life story. The girls were temporarily quieted and Wren began to doze just as we arrived at the Choo-choo High Station (the Georgia Street Sky Train). With car seats, stroller, back packs, Dora and Tinkerbell suitcases, and various other baggages in tow, we elevatored and escalatored down into the earth and boarded a Choo-choo High for the King Edward Station, the one closest to the hospital.  Back in the sunshine, we trundled our impedimenta 1/2 km to the BC Children's Hospital and disgorged into the oncology clinic waiting area.

Wren's blood work showed low hemoglobin, which explained the rash of recent irrational outbursts, but was high enough for us to continue without a transfusion. After meeting with our doctor, we grabbed a cab and headed for the airport, with a stop-over at the Little House to retrieve our remaining items that were jettisoned for our "alpine style" excursion to Vancouver Island. It took several tries to find a configuration that would allow all four of us and our belongings into the Toyota Prius taxi.

Poor, tired Wren was outraged about the seating arrangement and screamed for the entire trip to the airport, ensuring that the driver fully earned his $45 fare. "Goodbye Little Troublesome One" he said upon departing.

Then the flight, which went mercifully well with only a few minor outbursts. Nadina Mountain peaked through a foamy sea of cloud and we knew that we were nearly home. Finally we reached the Smithers airport where our old Rav 4 was waiting for us, and shortly we were home again, girls squealing with the excitement of rediscovery. I could barely stand, worn down by the day's many trials, as we tucked two tired little ones in bed. They soon fell asleep. Paula and I were not far behind.

It is great to be home.

Discharged!

Wren was discharged today at 1:00 pm. Even though we were hopeful that this would come to pass, it is always a great relief when it actually happens. Expectations have been too frequently quashed.

Hurray. We are very happily muddling about in the Little House.

Discharged!

Wren was discharged today at 1:00 pm. Even though we were hopeful that this would come to pass, it is always a great relief when it actually happens. Expectations have been too frequently quashed.

Hurray. We are very happily muddling about in the Little House.

A Night in the BC Children's Hospital Cancer Ward

Tonight I will describe for you what it is like to spend a night on the cancer ward at BC Children's Hospital. Last night I dutifully recorded what happened right through the night, recognizing that few readers have shared this experience, and that I will probably forget much of this over time.

March 2, 2011, 10:00 pm
Humidified oxygen is bubbling from a vent on the wall, an intervention that seems control Wren's dry cough, which is a response to the antibody. She is sleeping and the antibody has run its course for the day. She is doing well and it is time to rest. We are in good hands tonight and the prospects for sleep are not too bad. As usual, I am wiped.

Wren is presently attached to eight I.V. pumps, though not all are running right now. There are also heart rate, respiration rate, and oxygen saturation monitors. A separate machine records her blood pressure--it has been used frequently and her skin has become so sensitive that sores encircle both arms. She is tethered to a large, forked candelabra by a spaghetti of tubes and wires. Lights from the screens of the pumps and monitors are bright enough to illuminate the words in my notebook.

Ours is a large room with a window into the playroom. This is frustrating for Wren because she is not able to leave the bed owing to the number of instruments that are attached. A peripheral I.V. was removed today because of localized swelling. It was moved to the other hand, though it took two tries without freezing to get the new line started. Now her right hand is receiving medicine while the left slowly deflates. I held her close as she cried for Mama.

But Wren has just fallen asleep and a feeling of peace has settled in. The oxygen is providing plenty of white noise and I imagine that I can taste its sweetness. Time for me to crawl into the cot and close my eyes. It is now 10:30 pm.

11:00 pm. The nurse tries to encourage sleeping Wren to accept an oral dose of Tylenol without luck. My efforts are equally rebuffed. I must have fallen asleep. Before 11:00? Wonderful!

12:00 am. Recording blood pressure and temperature (vital signs) necessitates (?) a familiar series of beeps and bongs. I've slept for the past hour. Wren too. So far so good.

1:20 am. Another visit from the nurse. Wren calls out in her dreams. It is too warm. The hiss of oxygen is missing.

1:30 am. The oxygen monitor bongs as her saturation momentarily drops to 86 (normal is in the 90s). In a dream, Wren wimpers. Then everything returns to normal.

2:15 am. Wren's heart rate climbs above 185 bpm and her breathing is over 40, which sends the monitors bonging again. Her heart rate has been as high as 215 bpm during our most anxious days many months ago, so this doesn't phase me. I try to give Wren the Tylenol, which should settle her down, but she still refuses, so I put a cool cloth on her forehead. A pump alarms and small green letters repeat "SYRINGE EMPTY". I get up and ring the call bell and then change Wren's diaper. She is shivering and has a temperature of 39°C. She needs the Tylenol to bring down the fever, and finally she agrees to take it. Within a few minutes her heart rate and respiration drop by 10. How is it that I've become comfortable when her resting pulse is 175 bpm, more than three times my own?

Wren decides that she would like to go potty, so I go and get the plastic tray that we have been using (note, no potties in the Children's Hospital...a bit odd, no?). I take off her diaper and carefully lower her onto the flimsy tray. The tangle of wires must come as well, but the procedure causes one of the heart rate leads to come off and the oxygen sensor to temporarily fail, setting off a series of alarms. I spend a few minutes sorting this out and then try to settle Wren back into bed without kicking over the tray of pee. She is restless and coughing again. 3:00 am approaches and the requests begin. First it is to lie beside her, then to read a story, then she asks me to get Mama (who is at the Little House), then to blow bubbles with her, then a dry diaper. The requests continue. Some I fulfill, others I cannot. The oxygen is turned back on. It is 4:00 am and Wren would like to play with pretend cupcakes. Her eyes are closing and soon she rolls onto to her side, curls up, and falls back asleep.

5:20 am. An alarm signals the completion of another medicine. I have slept for another hour!

6:00 am. Wren is startled when her temperature is taken. She wakes crying.

6:30 am. "SYRINGE EMPTY" and its accompanying sound effects.

7:45 am. Wren wakes and asks for my hand while the nurse checks her blood pressure and temperature. My day begins. I change Wren's diaper, find her some new pants to wear, fold and tuck away the cot, and check the wall clock to see if it is too early to phone Paula back at the Little House.

This is a typical night in the hospital, better than many, and there have been many.

If all goes well, Wren will be discharged tomorrow and we will spend a night all together at the Little House. Then we will go to Union Bay to visit with Paula's family before returning to Smithers on Monday night.

Sleep well.

A Night in the BC Children's Hospital Cancer Ward

Tonight I will describe for you what it is like to spend a night on the cancer ward at BC Children's Hospital. Last night I dutifully recorded what happened right through the night, recognizing that few readers have shared this experience, and that I will probably forget much of this over time.

March 2, 2011, 10:00 pm
Humidified oxygen is bubbling from a vent on the wall, an intervention that seems control Wren's dry cough, which is a response to the antibody. She is sleeping and the antibody has run its course for the day. She is doing well and it is time to rest. We are in good hands tonight and the prospects for sleep are not too bad. As usual, I am wiped.

Wren is presently attached to eight I.V. pumps, though not all are running right now. There are also heart rate, respiration rate, and oxygen saturation monitors. A separate machine records her blood pressure--it has been used frequently and her skin has become so sensitive that sores encircle both arms. She is tethered to a large, forked candelabra by a spaghetti of tubes and wires. Lights from the screens of the pumps and monitors are bright enough to illuminate the words in my notebook.

Ours is a large room with a window into the playroom. This is frustrating for Wren because she is not able to leave the bed owing to the number of instruments that are attached. A peripheral I.V. was removed today because of localized swelling. It was moved to the other hand, though it took two tries without freezing to get the new line started. Now her right hand is receiving medicine while the left slowly deflates. I held her close as she cried for Mama.

But Wren has just fallen asleep and a feeling of peace has settled in. The oxygen is providing plenty of white noise and I imagine that I can taste its sweetness. Time for me to crawl into the cot and close my eyes. It is now 10:30 pm.

11:00 pm. The nurse tries to encourage sleeping Wren to accept an oral dose of Tylenol without luck. My efforts are equally rebuffed. I must have fallen asleep. Before 11:00? Wonderful!

12:00 am. Recording blood pressure and temperature (vital signs) necessitates (?) a familiar series of beeps and bongs. I've slept for the past hour. Wren too. So far so good.

1:20 am. Another visit from the nurse. Wren calls out in her dreams. It is too warm. The hiss of oxygen is missing.

1:30 am. The oxygen monitor bongs as her saturation momentarily drops to 86 (normal is in the 90s). In a dream, Wren wimpers. Then everything returns to normal.

2:15 am. Wren's heart rate climbs above 185 bpm and her breathing is over 40, which sends the monitors bonging again. Her heart rate has been as high as 215 bpm during our most anxious days many months ago, so this doesn't phase me. I try to give Wren the Tylenol, which should settle her down, but she still refuses, so I put a cool cloth on her forehead. A pump alarms and small green letters repeat "SYRINGE EMPTY". I get up and ring the call bell and then change Wren's diaper. She is shivering and has a temperature of 39°C. She needs the Tylenol to bring down the fever, and finally she agrees to take it. Within a few minutes her heart rate and respiration drop by 10. How is it that I've become comfortable when her resting pulse is 175 bpm, more than three times my own?

Wren decides that she would like to go potty, so I go and get the plastic tray that we have been using (note, no potties in the Children's Hospital...a bit odd, no?). I take off her diaper and carefully lower her onto the flimsy tray. The tangle of wires must come as well, but the procedure causes one of the heart rate leads to come off and the oxygen sensor to temporarily fail, setting off a series of alarms. I spend a few minutes sorting this out and then try to settle Wren back into bed without kicking over the tray of pee. She is restless and coughing again. 3:00 am approaches and the requests begin. First it is to lie beside her, then to read a story, then she asks me to get Mama (who is at the Little House), then to blow bubbles with her, then a dry diaper. The requests continue. Some I fulfill, others I cannot. The oxygen is turned back on. It is 4:00 am and Wren would like to play with pretend cupcakes. Her eyes are closing and soon she rolls onto to her side, curls up, and falls back asleep.

5:20 am. An alarm signals the completion of another medicine. I have slept for another hour!

6:00 am. Wren is startled when her temperature is taken. She wakes crying.

6:30 am. "SYRINGE EMPTY" and its accompanying sound effects.

7:45 am. Wren wakes and asks for my hand while the nurse checks her blood pressure and temperature. My day begins. I change Wren's diaper, find her some new pants to wear, fold and tuck away the cot, and check the wall clock to see if it is too early to phone Paula back at the Little House.

This is a typical night in the hospital, better than many, and there have been many.

If all goes well, Wren will be discharged tomorrow and we will spend a night all together at the Little House. Then we will go to Union Bay to visit with Paula's family before returning to Smithers on Monday night.

Sleep well.