Hemophilia History Made: Everest Summit!

Mountaineer Chris Bombardier

He did it! History made!  Chris
Bombardier, the young man from Denver, Colorado with hemophilia B, around 10 pm last night became the first person in history with hemophilia to summit Mt.
Everest! Everest alone is an incredible challenge due to the high altitude,
which kicks in on the nine-day trek to base camp at about 10,000 feet. Everest
is 29,029 ft. Chris has hemophilia,
and faces prolonged bleeding from injuries. He uses an extended half-life product,
which will help increase the length of time factor circulates in his blood. So
many have asked how he is protecting himself: factor, prophylaxis, oxygen
tanks, and great sherpas to help guide him. It takes a special kind of person
to dream of this, train for this, and take on this. And he is doing this not just for personal best record or even to make history, but to shine a spotlight on the huge disparity in care between hemophilia treatment in countries like the US and in countries like Nepal.

Read from his blog, Adventures of a Hemophiliac. What does a guy with hemophilia think
and feel before undertaking a history-making adventure?
Infusing on a rock!

TUESDAY May 16



I finished my last infusion at base camp and tomorrow morning
our team will begin our summit push. I’m not exactly sure how to describe the
feelings I am currently having. I’m excited, nervous, scared and hopeful all at
the same time. I know the next week of my life will be incredibly hard, full of
moments of questioning my sanity and of overwhelming joy. I’ll be able to
witness some of the most amazing views on this planet and also be more
exhausted than I have ever been.

Through the hard moments and the amazing moments I know that I have a family
that is supporting me no matter what. My beautiful and strong wife, my
incredible parents, aunts, uncles and friends will be with me ever step of the
way. I also know that I have my bleeding disorder family from all over the
globe cheering me on and that makes me feel strong.

As I pack my gear and put my boots on in the morning and walk into the [Khumbu]
icefall with only the light of my headlamp showing the way, I’ll think about
how fortunate I am to be able to choose this life and this adventure. Choose to
try and push myself farther than I could ever dream and step on the top of the
world. I’ll also think about all my blood brothers and sisters that aren’t able
to have that choice…. yet. I’ll remember that by standing on the summit and
by raising awareness about hemophilia and disparity in care, we can change that.

The hope is that we can summit on May 22. While I am challenging myself on the
mountain I want to challenge all of you. We already met the goal of finding
sponsors for every child on the Save One Life,
Inc.
 website. 55 kids have now been sponsored since I began
this adventure! Let’s not stop there!

The climbers promoting Save One Life
I would love to see the fundraising page for my Everest climb
reach $8,848, the amount of meters above
sea level the summit reaches. I won’t know if we’ve reached that goal until two
days after the summit and I reach basecamp but that would be icing on the cake.
Those funds will help those with hemophilia in Nepal continue to rebuild after
the earthquake. It will help them climb their own personal “Everest”
and work towards living the lives they choose. I would also urge you to reach
out to Save One Life and put your name on the waiting list to sponsor a child.
There will be more children added soon and they all could use our help.

Thank you all for the support and hopefully in few days no one will be able to
say someone with hemophilia can’t climb Everest. 

Navigating the Khumbu icefall: first steps to Everest

And thanks to Octapharma for sponsoring Chris’s historic
climb!
Visit our Gallery to see the trek to base camp!
Visit our Gallery to see our visit to Nepal’s hemophilia families
Read more about our Nepal trip here!
“Climbing, simply and joyfully, is the way I love the world.” Steph Davis, High Infactuation: A Climber’s Guide to Love and Gravity

Meeting the Mountain; Meeting Myself

Laurie Kelley en route to
Everest base camp

Everest Base Camp Journal Part 2

Why do people subject themselves to hardship and
even personal risk to climb a remote mountain, or in my case, just to gaze upon
one? I learned on the second part of the Everest base camp trek that when you
meet the mountain, you are meeting yourself. To get to base camp requires
suffering long before you start through hard core training, then the trek
itself with all its deprivations, illness and discomfort, and for what? It’s to
see a mountain that most will never see. But it’s also to see a side of
yourself you might never see. The mountain holds a mirror to you, showing you
inner parts that are not apparent unless pain and testing bring them forth.
Sometimes you are angry with yourself—you allowed yourself to be ill, fall
behind, complain. Sometimes, you are surprised: I did it! I climbed that baby!
Sometimes, you are amazed: not only did I overcome, but I did it with grace and
appreciation.
     These are the things you
learn by undertaking these journeys. But the mountain is only a metaphor,
because anything that unveils your deeper inner self involves risk and
suffering: being a parent, being in a relationship, going to school, trying for
a new job or career, getting healthy, overcoming a severe illness… a chronic
illness, like hemophilia. Pushing yourself into a new terrain, to learn, to
try, to even fail. When it is over, you know more about who you are, and what
you can do, and what is possible.
Chris Bombardier, a young man with hemophilia from Denver,
Colorado, is pushing his limits to see what he can do, not just
for himself but for all people with hemophilia; not so that everyone will climb
a mountain, but as a metaphor
for what is possible
, what can be overcome, and to find out who we are as
individuals.
            
                     
                     
                     
                     
     
Our rugged route for 9 days
Friday April 7, 2017
“… the climbers I know all love life and fight
furiously to hold on to it, and the same restless energy and enthusiasm helps
them overcome the problems of everyday life and is transmitted to those around
them.” Joe Tasker and
Chris Bonington, Savage
Arena
 
I was awake at 5 am in my lovely room at the
“Rivendell” tea house. I had a
fabulous night’s sleep but it was freezing in the room. The
extreme cold sapped my cell phone batteries, and I realized I needed to start
sleeping with all my batteries. I had scrambled eggs and two pieces of white
toast for breakfast. Not much, but I haven’t had an appetite.
            The
hiking wasn’t strenuous, but at this altitude, I still plodded. At times I
walked alone, at other times with Lhakpa,
the 29-year-old sherpa assigned
to accompany me as I tried to catch up with our group (I’m two days behind
everyone due to food poisoning). He carried my 44 lb. rucksack as well as his
own on his back the entire time. After two days, I finally caught up with
everyone in Dingbouche. Tashi, the lead sherpa, hugged me! I made it! “Many people get sick on
these treks,” he shared, “but not many recover to continue the
trek.” I felt instantly better hearing that.
Saturday April 8, 2017
“Snow mountains, more than sea or sky, serve as
a mirror to one’s own true being, utterly still, utterly clear, a void…”
Joe Trasker and Chris Bonington, Savage Arena
Climbers Memorial
Our group of nine climbers set out and the
walk was a switchback uphill for a while, which we all took slowly, with Ryan
in the lead. No one spoke for a long time. Up and up… the mountains were
stunning, the road dusty.
            Eventually
after two hours we came to the climbers’ memorial. These are cairns of stone,
erected in memory of those lost on Sagarmatha (Everest).
First I saw Rob Hall’s, which was plain; Hall was the guide portrayed in the
2015 movie “Everest.” Then Scott Fisher’s, which was colorful with
prayer flags and writing (he was also portrayed in the movie). Prayer flags
flapped in the wind above. The wind was cutting-cold and borderline
uncomfortable.
            After
paying our respects, we walked on, this time more downhill and soon came to a
lunch spot. I only had half of bowl of soup and one piece of toast. 
            Now
came the hard part: over an hour of plodding, up and up. Dust, wind, no air.
Yak caravans broke up the monotony now and then. One step at a time. Everyone
slowed to a crawl. There were a lot of people now on the trail. After an hour
we came to flatter surfaces with low scrub, big round boulders. The walking was
easier. We walked for another hour to hour and a half, and came to Lobouche at 16,000 ft. I felt great now.
No headaches. We crashed at the picnic tables inside, and had tea.
            I
watched Maria eat a Snickers bar and suddenly felt really well.
Jess took out chocolate covered pomegranates and I devoured a bunch.
            Tomorrow
we will hike and stop at Gorak Shep
at 17,000 feet. Monday we will arrive at base camp.
Sunday April 9, 2017
“… Charles Dickens, crossing the Atlantic in
1842, described his cabin as an ‘utterly impractical, thoroughly hopeless and
profoundly preposterous box.’” The Lost City of Z
It’s 7:30 pm and I’m already in my sleeping
bag. It’s. so. cold. My fingers are numb. But I paid
$3.50 for a little bowl of hot water and I washed my face and hands and it felt
excellent. I knelt before the bowl as though I worshiped it! It’s a tiny little
room, just plywood. 
Yet looking out the window,
I see stunning views of the Himalaya at night. The mountains are stark against
a clear, cold night. I can see the Big Dipper at my window, bright and
magnificent.
            We
started at Lobouche, hiked some
steep hills at times, switchbacks, some rough terrain. Yaks continued to pass
us, jangling their cow bells. Jess has severe sinus problems. We stopped along
the way to rest. A slow, easy trek about three hours. We arrived at Gorak Shep today at 11 am. It was a
surprisingly dirty place. We had lunch and then the group climbed a local hill
to see Everest, but I opted to stay behind and rest. When Chris and Rob
returned, even they looked cold and spent. 
Monday April 10, 2017
“This is at the bottom the only courage that is
demanded of us: to have the courage for the most strange, the most singular and
the most inexplicable that we may encounter.” Rainer Maria Rilke
I’m relaxing in my clean, spacious tent at
Everest base camp finally! We’ve all had lunch and it’s 2 pm. Everyone’s pretty
tired, but a good tired, from hard work.
            We
were up at 6 am after a wonderful night’s sleep despite the cold in the tiny,
plywood room. The room was freezing overnight! Everyone seems tired today, or
in their own little world. It was
windy and cold, and we started to ascend. It was a long morning. A two-hour
hike turned into a three-hour hike because we fell in behind a yak caravan and
we couldn’t pass. It was too dangerous as the trail was so narrow and high.
Large rocks bordered the path, keeping us from pitching over mountainsides. So
we plodded: the yaks, the sherpas,
our guides and me.
            My
fingers, grasping trekking poles, went numb from the cold. Luckily my toes were
warm and my core was fine, thanks to five layers of warmth. Rocks littered the
path; this was hard work. I could hardly lift my eyes to see the peaks anymore.
The wind kicked up and knocked me down onto a rock at one point. I didn’t know
it then but I had already lost four pounds.
            At
17,500 feet, we’re at 50% oxygen levels. My breathing was labored as I tried to
suck in as much oxygen as I could. Jess was feeling ill, and lagged behind. A
sherpa and Jess’s husband Chris helped her all the way to base camp.
First glimpse of Everest
            As
I trudged along, I looked up at one point and unexpectedly saw the tip of
Everest. Before it were triangular mountains with snow caps, looking almost
cheery, like ski slopes. Then behind them, a menacing black triangle jutted in
the middle—Everest—with a shroud of white mist swirling about it, like a black
sorcerer’s cap surrounded by ghostly conjurings.
            That
is Chris Bombardier’s prize:
Everest. Despite the strong wind and my frozen hands, I laid down my
poles, unclipped my backpack
and struggled to remove my digital SLR camera to capture this. I thought, It
looks like a minister, wrapped in his black robe, protected by his minions with
their blue capes with white fur tops
. And at their feet, and below me, was a
valley with moraines and glaciers…. A violent geological upheaval that happened
thousands of years ago. Rocks, boulders, ice blocks, all jumbled together in
chaotic form, a testament to the birth of the Himalaya and all the earthquakes
and avalanches there since.
           At last
from up on our ridge, I could see below tiny yellow tents in the distance, in a
valley of blue ice. Base camp! The camp grew closer, the tents more in focus.
The terrain became even more difficult to manage. I squeezed through some tight
rocks and wondered how on earth the yaks with their burdens squeezed through
these same places?
            Descending
into the valley, I finally hit level ground and saw the big rock decorated with
prayer flags and a sign: “Everest base camp 2017.” Ryan and the group were
there and Ryan offered a high five. He asked how I was feeling—how was my head?
I told him I felt great. We waited for Jess.
Everest base camp!
            It
was still another 20 minutes to our camp. The group pulled away again and I
actually got lost and confused at base camp. Where was our tent? So many tents
and groups all staked out their camps. I felt like a penguin chick who lost its
mother and faced a mob of others who were not terribly sympathetic. Finally I
saw Chris and Jess and waited to walk with them.
            Camp
is nice! Once there, we met in the mess tent, relaxing and having tea. Some
euphoria, and lots of fatigue. Leif confided he felt so much emotion at being
back. Eventually the sherpas served
a wonderful lunch. The table was covered with a cheery tablecloth, with
colorful plastic flowers that added a touch of home. There was tea, coffee and
cocoa set out with biscuits. My personal tent even had a welcome mat in front
of it!
            Our
camp sits right at the foot of the famous Khumbu ice
fall; I couldn’t believe that I was gazing on this natural wonder, this thing
of legends. I knew from all my readings of Everest and all the documentaries
and movies I’ve seen, that this was the start of the Everest summit hike. The
climbers must navigate this ravaged glacier, which has crumbled into a morass
of massive ice blocks, collapsed seracs and
endlessly deep crevasses. The climbers begin here and then can move on to
higher camps and eventually the summit. The ice fall would take them over six
hours to navigate; they’ll need to use ropes and up to 12 aluminum ladders over
the crevasses and up the sides of some glacier blocks. It’s a frightening
labyrinth. And here it was, first thing I could see when I unzipped my tent
door!
Tuesday April 11, 2017
The magnificent Khumbu ice fall from my tent!
I set up my tent yesterday, straightened out
everything for the next three days. It’s so cold! When the sun
goes down, wow. So I put in my sleeping bags my clean clothes for tomorrow. Tashi gave me a hot water bottle for my
bag, which was heavenly. I slept at 6:30 pm and woke up at 11:14 pm
absolutely freezing! It must have been 15° or lower. I could see my
breath. It’s hard to describe how the cold is; you take it personally that it
is trying to hurt you. I was awake till past 3:30 am. I heard avalanches, the
slow crashing of a mountainside, a roar that makes you wait and hold your
breath. Sometimes the wind barreled in, making it colder. My breath condensed
on my sleeping bag ridge near my mouth, forming little sheathes of ice. I
hardly drank any water all night, maybe a cupful as it was in the bag with me,
tied up in a dry bag. If the water spilled and my sleeping bag got wet, I’d be
in real trouble.
           I
drifted back to sleep a bit, and finally the morning came. I could only sit up
and pull on clean clothes, then get back into the safety of my sleeping bag. I
had to dash out of it to grab throat lozenges in the outer portion of the tent,
then Advil, then back under the covers. After 30 minutes, I got the courage to
pull on fleece pants. If you told me two hours later I’d be showering
in a tent, outside, I would have called you crazy! But I did it.
            The
sun started warming everything. At 8 am I ventured out for tea in the mess
tent. I had to climb over rocks and down makeshift steps to get to the mess
tent. I was actually feeling pretty good by then. Just light-headed from lack
of hydration, sleep and food. But the others had headaches too.
In front of camp: monstrous seracs
            The
shower was simple and good. Solar-heated hot water in a bag suspended overhead
inside a tent. I felt refreshed, clean and renewed. At 10:30 am we met all
the sherpas, and I realized how
much work they had done in the previous two weeks before our arrival to set up
this camp. 
Wednesday, April 12, 2017
I went to bed last night at 6:30 pm, taking no meds this time. I drifted in and out of
sleep, and despite temps dropping to a bone-chilling 1°, I slept beautifully.
            In
the morning, the sun came out and the temperature shot to about 40°. And I was
so relaxed, after a 12 hour sleep, that I started enjoying everything. Our camp
sits in a valley hemmed by stunning mountains, and strange glacial forms.
Before us, the Khumbu ice fall
waited. 
            After
breakfast was a gear check for Chris and the other climbers and then Tashi set up the aluminum ladder, and had
everyone cross it, including me! 
            The
weather was warm, the food good, the company nice. That day I stayed up till
8:30 pm and then went to bed. I had a bizarre experience in the night. I
woke up at 11 pm, absolutely gasping for air. It felt like someone was
strangling me. This happened throughout the night till about 3:30 am, when I
bolted out of the bag, into the grim, subfreezing air to grab a Diamox. I
had not taken any in 24 hours. Without it, I felt I was being asphyxiated. Kat,
one of the climbers, told me the next morning that this was “Cheyne-Stokes” syndrome. As we
sleep the brain registers it is not getting enough oxygen, and so causes a
reaction that wakes us up, feeling like we are drowning, so we gulp in more
air.

           
Thursday April 13, 2017
“… as a mountaineer the essence of life is in
the struggle, the contest against great odds…” Joe Tasker and Chris Bonington, Savage Arena
I’m sitting in the noisy but very warm and
stuffy, rustic dining room in Lobouche tea
house, where Jess, Lhakpa and
I stopped around 6 pm, after the return-from-base-camp trek from hell, unable
to proceed any further. We were lucky enough to get one room, the last one
left, and we claimed it, even though it was like sleeping in a meat locker
overnight.
Priorities: the sherpas erect
a small stupa for prayer

            I
awoke this morning, our last day at base camp, cold and shivering. I’d be
leaving base camp, and after a three-day trek, be back in Lukla. Jess has been absolutely suffering with
a massive sinus infection and constant headaches for four days. By 10 am, I
noticed three huge cloud formations in the direction we would be leaving. The
sun, always so welcome and warming the air by 30 degrees, disappeared this
morning and a damp cold settled in. I was concerned; we had a five-hour hike
ahead of us through rough terrain in very cold weather with bad weather
apparently on the way and a sick hiker. Jess and I should have started our journey right after breakfast, when
it was warmest and when it gave us time. But we started out at 1:15, very late.

            Why?
Well, there was the puja ceremony,
a necessary ritual to bless the climbers. The llama came at 10 am, sat on the
ground in front of the makeshift stupa and
chanted. Safety concerns overrode my desire to participate or celebrate. I
snapped photos but also ducked into the mess tent to escape the cold. It was
hard to enjoy the ceremony with this trek hanging over my head.
            The
ceremony lasted two hours. Eating, incense, chanting, rice throwing. Then came
Sherpa singing and then dancing, which was fun. At the foot of the Khumbu ice fall we all did the Sherpa
dance, stamping our feet, arms about one another in a circle.
Chris Bombardier practicing on ladder
            After
lunch, I said my goodbyes to the climbers: Maria and Frederick, Leif and Tona, Kat and Meretta. We hugged good bye
and I blew kisses, with Maria tearing up. I was amazed at this daring group of
people from Norway, Sweden and France, all hardcore mountaineers.
            But my
favorite mountaineer was outside: Chris
and Jess had a hard time parting. Both were sobbing, with Rob catching it all
on film. I hugged Tashi good
bye and said good bye to all the sherpas.
Then we were off. My parting look at Chris was of him sitting on the ground at
the edge of the little glacial pool, mournfully looking away, tears in his
eyes, with Rob filming him. He and Jess would not see one another for 5
weeks or more.
The puja: to bless the climbers
            The
trek was really tough. We forged uphill, at a snail’s pace. Rocks were
everywhere, endangering our steps. It took 45 minutes to one hour just to exit
base camp and get on the trail leading out, which went up and down continually.
The ascents are hard due to the altitude; just a few steps up leaves you
gasping for air, your quads burned out. You wait to replenish the oxygen in
your system and try again. We passed climbers coming in, trekkers, yaks and
mules and porters. Jess was hurting still. Eventually we walked two hours in
this dusty, rocky, geological mess, at times not able to see anything—not even
other trekkers—except rocks, boulders, mountains, grey and old, solid and
unforgiving. We came at last to Gorak Shep.
We stopped only for tea; the place was so dirty and cold even we didn’t want to
stay, tired as we felt. As soon as we sat down at a table in the dining room,
Jess curled up in a ball to sleep. I wasn’t at my best either, coughing
constantly and cold. 
        The trail was a wild, rocky mess. I was bundled up with six layers on top, but just hiking pants
below, a hat, buff and great hood. My feet were fine. My fingers went numb as I
was wearing only glove liners and not my ski gloves, which were in the rucksack. My nose
ran constantly, into the buff. I steamed up my glasses, so I couldn’t see where
I was going. Now and then I paused to see my surroundings: moraines, ice hoodoos, piles and piles of rocks of all
sizes and types—some as big as houses. The stunning, massive Himalaya, which
now looked dark and foreboding. The cloud cover was extremely low, as if to
blind and oppress the mountains. The wind blew at a clip, chilling us. I kept
thinking, It could always be worse, so be glad. Just put one foot in
front of the other. This day will eventually end. You know that much.
            The
wind picked up and it started to snow. Jess was getting worse. Lhakpa had to support her and she slumped
to the ground whenever we stopped. Other times she coughed so much she
moaned. Lhakpa held her
head. 
            What
if this gets worse? The cold air, the lack of nourishment, the constant
walking. We asked a Sherpa who passed us about hiring a donkey. But the idea of
Jess on a donkey for another two days was absurd. This was a tourist road; we
had options.
            What
about a helicopter? I asked Lhakpa and
he explained the costs. We made it somehow, the next 30-60 minutes to Lobouche, where there was literally one room
left at the tea house. 
            We
got an unheated room with three beds. Lhakpa fussed
with Jess, taking excellent care of her. He put her in the bed, in a room so
cold we could see our breaths. He brought her hot soup and a thermos of hot
water to sip through the night. He also brought a hot water bottle, which Jess
clutched to her as a mother would a baby. I finally told Jess I was ordering a
helicopter. The chopper would come at 6 am, and it would take 7 minutes, not
two days, to get to Lukla!
Friday April 14, 2017
The night was long and fitful, sleeping in a sub-freezing
room. Jess awoke at 3:30 am, coughing and moaning. Lhakpa was right there to offer hot water, and to compress
her head, which helped. After about 15 minutes, he went back to bed, singing.
The next day I asked what he was singing, and he told me, “A prayer.” What an
endearing young man. Jess and I tipped him well as he offered to us compassion
and help that cannot be feigned or bought.
Rescue!
            The
helicopter arrived around 6:20 am. We were easily up, dressed, packed. Skipping
breakfast or even hot tea, we walked out to the landing site, just the top of a
slight hill, and waited. The red rescue Fishtail helicopter thwacked its way to
us and we boarded. Truly about 10 minutes later we had bypassed all the rugged
trails, the dust, the yaks, the tea houses, and flew over this mountainous and
beautiful country, and landed in Lukla,
high on a hill, the starting point of our trek two weeks ago. The chopper
landed right next to the mountain top clinic, and we went inside. A kindly
British doctor was there, who checked Jess over, gave her prescriptions for
antibiotics, pain killers and decongestant, and in about an hour, a second
helicopter came to take us to Kathmandu.
            It
was here in Lukla that we said
good-bye to Lhakpa, who cared for
me for two straight days after my food poisoning, and who cared for Jess on her
difficult journey. We would truly miss him. We could express our appreciation
in words and in a huge tip, worth two months salary for him. His life is hard.
What would he do when trekking season is over? “Work on our family farm,” he
said. Maybe pick up odd jobs for trekkers or visitors. He has no steady income
and like most in Nepal, is poor.
         
  By 10 am we had flown back to Kathmandu, and were in our hotel.
What a contrast: clean, hot water, soft beds. It seemed surreal.
          And I was
besieged by “climber’s guilt.” I could enjoy for the next few days
all the comforts and luxuries of a modern hotel while Chris and the climbers
slept every night in that bitter cold, had to climb up to Everest, camp by
camp, further into the thin air. But that’s what separates mountaineers from
the rest of us. They are focused, impervious to so much hardship, welcome it in
fact, push themselves to the extreme.
       Chris Bombardier
is poised to make history as the first person with hemophilia to summit Everest. 
In
fact, he already has made history as the first to attempt it. With what
I have seen of his fortitude and courage, he will make it. I’m honored to have
spent the days on the road with him, seeing him in action, sharing a little of
the hardships they faced and will face, to understand the sacrifices they make,
which are huge. He had asked me if we could do a base camp trek with others
with hemophilia, and I replied count me out! But after two days, yeah. I can do
it. I learned a lot about myself and how I respond to this hostile environment.
I knew more about it and myself. I can apply that and push the envelope
further. Yes, I would do it again.
www.saveonelife.net
        And it was a
wonderful World Hemophilia Day in Kathmandu with the Nepal Hemophilia Society
where we praised Chris for doing this, because he highlights the disparity in
treatment between countries like the US and countries like Nepal. I reminded
the crowd on April 17 that the first summit of Mt. Everest was not Sir Edmund
Hillary of New Zealand, it was Hillary and Tenzing Norgay, a sherpa from
Nepal. Together they conquered the tallest mountain on earth. Together we will
conquer the disparity in hemophilia care one day.

Thanks again to Chris, and to Octapharma for full sponsorship of this climb. Follow Chris at Adventures of a Hemophiliac on Facebook. Please consider helping those in Nepal at Save One Life!

Hard good-bye: Chris and Jess Bombardier

Laurie Kelley and Jessica Bombardier:
cleaned up and ready for home!

Searching for a Stone and Unexpected Luck


Thursday
March 30, 2017
This was easily our best day in Nepal, packed
with adventure, home visits and a deep appreciation of Nepal, its people and
the Nepal Hemophilia Society. Manil showed up with two vans: the production
team of Believe Ltd—Patrick James Lynch (director), David Beede (sound), Josh
Bragg (video) and Rob Bradford (photography)—pile onto one van, but first, they
tape a GoPro to the front of the van to capture the frantic, physics-defying
Kathmandu traffic. Chris, Jess, Manil and I get into the other van and off we
go. We leave the capital area and venture into the countryside, where the urban
concrete jungle turns to trees and farms, cattle and hay. We’re on our way to
see Bibesh, a 19-year-old with hemophilia and a beneficiary of Save One Life. It
rained last night and while creeping uphill on a dirt road, our van gets stuck
in a muddy washout. The production vans zips by while the guys laugh at us and
disappear around a hill. We all have to get out. We grab our bags and the bags
with gifts and start to walk. Around the hill? The production van, also stuck.

Manil tells us it’s about a half hour walk to
Bibesh’s home. The guys are carrying in total about 130 pounds of equipment:
cameras, batteries, cases, microphones. Josh props his enormous video camera on
his shoulder practically the entire walk. As we walk, the Believe crew
interview Chris and Mani. Jess and I hang together as we walk. The road is
thick with mud, and luckily we are all wearing our hiking boots. But it’s
pleasant: the air is moist and refreshing, and the view is stunning. Tilled,
green hills, brick cottages, cows. The valley stretches before us, decorated
with trees and crops. Somewhere far away we can hear music, and strangely, a
cuckoo!

Now we walk down a hill, slipping in the mud.
It’s here that Mani tells us he will need to wait while we go on. He is
limping, and his arm is in a sling. I’m sure he must feel pain but he doesn’t
complain. After we slip down the hill, we stroll out
into a huge green field, following a trail. We’re in the middle of nowhere it
seems as the village we just went through recedes. Down the trail, we have to
cross a stream, and the only means is to balance on a plank. Yes, a plank!
Patrick goes first, then me, then Jess, who clowns around. Then up a hill, very
steep, and it leaves us huffing and sweating. We come to a cottage, but it’s
not Bibesh’s so on we go. It’s getting to be surreal, that this young man has
to overcome roots, vines, mud, hills and a very long walk, just to get to a
bus, that would then take him another hour to get to the hospital to treat a
bleed. And none of them complain, or curse their fate. Ever. They hope—hope
that we can help them, and they ask. But they don’t demand, argue or get
vengeful.

At last we reach Bibesh’s home, high on the
hill. It’s made of brick, but has obvious cracks in it from the earthquake. The
porch is propped up with poles. All around is dusty earth. In fact, they don’t
live in the house but live in a shed, and are building another home up another
hill. The guys get their cameras and sound gear ready. Bibesh is 19, and
actually just had a birthday yesterday. His mother Uma is present, and his
81-year-old grandmother, Bed Kumari, who is as frail as a little sparrow, with
deep set eyes, skin the texture of leather, with many deep creases. Her face is
remarkable, and I photograph her. The lines are like chapters in a book, and
she has a long, amazing story to tell, if only she could. We have a shocking
moment when the great-grandmother appears! She’s a bit wild, with grizzly hair,
missing teeth, rail-thin body, and darting eyes. She speaks in Nepalese very
loudly, and the family motions that she’s hard of hearing. We all get a kick
out of her.

The family is very poor. The father works in
a shop, and earns about $180 a month. The sponsorship he gets through Save One
Life is $24, so it definitely helps. They own their home, which is good, but it
is in bad shape now.
Bibesh himself is a handsome young man, well
dressed and soft-spoken. He speaks English pretty well. He gives us a tour of
the property. We go inside the condemned house, which is more narrow inside
than it looks. We have to duck; the stairs are creaky and threaten to give out.
It’s dusty and damp, with a concrete floor, no screens in the windows. Chris
goes upstairs where the bedrooms are, and Bibesh shows us how the main beams in
the house split under the stress of the quake. Cracks appeared in many of the
bricks too. Outside, we take a short trip up the hill some more and see the new
house under construction. While they use bricks, the mortar seems inadequate to
keep the bricks together. The family is proud to show us a beautiful brick
temple they are also building.
The mother kindly brings out refreshments,
and as I take one with my hand I burn it—ouch, I shout! Hot tea!

Later, I sit near the grandmother, who
watches me, and we hug and she nestles into my arms. She is so thin—you can
feel all her spine and shoulder bones. Such a lovely old woman. I wonder what
she makes of all this: cameras, strangers, interviews.

When we leave, Josh gets the drone ready to
take aerial photography. It sounds like a huge bee buzzing overhead. Going down
the hill proves to be just as challenging as going up. We slip and slide our
way down the hill, back to the stream. Chris and Bibesh chat as they descend,
with Josh filming.

Manil waits for us by the roadside; on to the
next home!

It’s a one hour ride to see Om Krishna, a
17-year-old. We stare out the window and see miles and miles of concrete
bricks. Made right from the mud, the bricks are formed, stacked and then
carried on the backs of men, to make long walls of stacked bricks to be sold.

Beyond the brick-making farms, we approach Om
Krishna’s town. The neighborhood is pretty, with some big homes. Om Krishna’s
home is also big, but uninhabitable—earthquake. The family moved from it into a
shed, something we would use to store gardening tools. It really seems wrong
that they should be living there, especially so long after the quake. Not only
does the whole family turn out but the whole neighborhood! Children spring from
nowhere and smile shyly and hide behind adults. Patrick and team waste no time but get right
to work setting up the equipment and proper places to film.
While they interview, I hang out with the
adorable little cousins. Jess and I brought school supplies from Colorado, and
puzzles and punching balls donated from the New England Hemophilia Association.
These were all big hits! Om Krishna is a handsome young man, who speaks English
almost perfectly. He’s a good student. He confides in me after the interview
that he worries about continuing school, as his father is a driver and doesn’t
earn much.

One thing Om Krishna is rich in is family.
It’s obvious he is surrounded by love: a beautiful, elegant mother, who,
despite their struggling status, walks with dignity and grace, her sari gently
flowing. She beams at her son. So does the grandmother, with a face etched with
years but with a warm smile for this special young man. 

Sadly, Om Krishna’s little brother died of an
untreated gastrointestinal bleed. He still has a hard time talking about it.
This is difficult in some cultures. When you have one child with a disability,
it’s considered unfortunate. Two? That’s a curse. The family could risk being
ostracized from the neighbors for something like this.

After our visit and interview we pile back
into the vans and head to the last house of the day: the Rajbchak
family. After another hour long drive (poor Jess kept feeling car sick), we
arrived, and pulled up alongside a roadside shop I know well. Behind the front
counter was Jagatman (age 26), a Save One Life success story. Jagatman owns
his own mobile repair shop, after receiving training funded by Save One Life,
and then a microenterprise grant.

When I stepped out of the van and up to his shop, he smiled broadly
and we both said namaste. He looks great! Confident, strong, which is
remarkable as he has an artificial leg, also a gift from Project SHARE. The
shop is perched at a cross roads and has an open front that displays watches,
toys, picture frames and candy. Soon his brother Jagatlal, who goes by the
nickname “Monsoon,” appeared. We hugged each other (after all, we are friends on Facebook now). Monsoon speaks English fluently and translated for us.
Again, Patrick and the Believe team got right to work and right there, in the
middle of the street, after pulling up chairs, began interviewing Jagatman. A
crowd gathered. Patrick asks excellent questions and gently guided Jagatman and
Monsoon through what is it like to have hemophilia in a developing country.

Because the shop is in a prime place, a bus stop, there was all kinds
of noises emanating from the street: motorbikes, cars and a really loud three
wheeled motorcycle that had metal pipes on it that obviously rattled and banged
each other while it took the corner near the shop. Patrick almost packed it in
then!
After the interview, we walked down the streets, with Josh, Rob and
Dave filming. Somewhere electronic music from a dance club was playing, so
loud! It’s a wonder they could even film.
The boys’ house was completely destroyed in the quake. It’s now just a
pile of bricks. The family lives across the street in a shed as well, much
bigger than the others I saw. Outside the entrance of the shed, the boys’
mother waits, ready to offer us hot tea. So nice! We filmed it all and finally
had to call it a night. It was pitch black now, and we still had an hour ride
ahead to get back to the Shanker Hotel.

Going back to the street corner
store, we said goodbye to Jagatman. The boys’ father bought a fresh yogurt
drink from the store next door. It was refreshingly delicious. The Nepalese hospitality
and civility never fail to amaze me. Here’s a family with two boys with
hemophilia, one who lost his leg, and a family that lost it’s entire house, and
they are buying us yogurt drinks!

We are
thoroughly exhausted when we drive back. Jess is the first to fall asleep in
the van, then Chris. It’s emotionally draining to visit, view and hear the
stories of loss, and wonder how these families find the faith, will and
reserves to continue.

But I got
one piece of good news that day: the 4 million IU donation of factor just got an
upgrade. 5 million IU, the largest single donation in Nepal’s history. Thank you
Octapharma. Just made my night.

“To find god while searching for a stone.” This Nepalese proverb is used to describe unexpected luck.

Aim to Fly and Touch the Moon

Udeshya ke linu, udi chhunu chandra ek. Aim to fly and touch the moon together.

Nepalese proverb

I’m back in
Kathmandu, Nepal after 18 months, and still there are so many signs of the massive earthquake that rattled the country on April 25, 2015.
The
air quality remains poor: my throat feels raw and my eyes water. Our team wears filter
masks strapped to our faces, to protect our lungs. The city at night pulsates like a
living being: through the streets motorbikes, cars, rickshaws, trucks flow,
belching out waste, laced overhead by a gnarly grey network of telephone wires
and cables at each street corner.

I’m here with the crew from Believe Ltd, who will be filming hemophilia B patient Chris Bombardier as he meets with the Save One Life program partner, the Nepal Hemophilia Society (NHS), and patients, and prepares for his Everest attempt. Chris’s wife Jessica accompanied him and will trek with us to base camp. She and I will stay two nights, then come back to Kathmandu while Chris stays another month, acclimating for the big climb. Should Chris summit, he will be the first person in history with hemophilia to conquer Everest. With
all the camera equipment, and Rob Bradford (photography), Jess, Chris and I in another, so Rob can
film. I enjoy their wide-eyed first look at Nepal with all its helter-skelter traffic
and humanity.
First stop today, Tuesday, March 28, is the Bir Hospital, where I’ve been three times
previously. I first came to Nepal in 1999 for an assessment visit, then returned in 2000, when my company funded a medical conference. I was so impressed with the NHS then. And more so now. The NHS became our second program partner for Save One Life solely based on their ability to get the job done right, and fast. They are a crackerjack team and work hard to help their patients. 
It’s different
traveling with a film crew this time. I’m used to moving fast and ducking in and out. But
with about 200 pounds of camera and sound equipment, we have to move carefully
and cautiously. The hospital is still in disarray following the earthquake. It’s dark and uninviting. But the hemophilia treatment ward is brightly lit,
clean and orderly. No patients are there at first, and while the crew films,
we chat with the two lovely nurses.
I learn there are 573 registered patients out of an estimated 2,500.
A high number registered! About 200 make regular visits to the HTC, also a
high number. The center is now open 24 hours a day, which is excellent. They have a small
fridge, under lock and key, for factor. Inside is the Biogen/WFH donation of
Alprolix and Eloctate. This donation is absolutely revolutionizing care,
because it provides consistent product availability, which allows for planning, which leads to a
changed mindset. (I will write more about this in the August issue of PEN).
The nurses slipped silk scarves about our necks and greeted us with
“Namste!” as we each entered. The ward was upgraded! Freshly painted, with new
offices for factor storage and for the nurses’ office; it looks excellent. A freezer held
fresh-frozen plasma, something you never see in the US; this is for patients
with rarer factor deficiencies, or for when there is no factor.

Then a patient walked in: 18-year-old Bibek, a handsome, tall young man,
slender, with an apparent elbow bleed. Despite what must be searing pain, he
smiled broadly, was calm and accepting, gracious. It’s how the Nepalese are:
deeply ingrained in each seems to be a gentle approach to life, respect for
all, and profound civility. They have much to teach the world about how to get
along with others.

We chatted with him and learned he had to travel 3 hours to reach the
HTC for one injection of 1,000 IU, not even enough for his lanky frame. And the
elbow bleed started the day before. He didn’t put ice on it because there is
none where he lives. Still he smiles; his face is placid and open, inviting.
His English is excellent.
Patrick asks us to redo the entire visit for the documentary! We have to regroup in the
hallway, then enter again, replay every conversation and act. We joke it’s
Bollywood and we should sing and dance our way in. Think the ending of Slumdog Millionaire! So we comply and redo the entire entry, greeting,
conversation. I ask them to include the photo of the mom who died in the
earthquake, while she was assisting in blood donations. She’s a true hero.
I chat with another young man there, who I had met in 2015:
Ashrit. I regret that I didn’t recognize him at first. We chatted, and he
lifted his leather jacket sleeve to reveal a clawed hand: Volkman’s
contracture. Repeated bleeds for four years have left his left hand useless,
and in a permanent grasp. The saddest part is that he loves to play guitar. I
ask who his favorite guitar player is and he rattles off a long list: Jimmy
Page, Angus Young, Jimi Hendrix… “Slash?” I ask. Oh yes! He’s amazing! So we
share stories of guitar players and music, and he knows how to play Sweet Child
O’ Mine (one of my favorites). He even learned to play with one hand and had Jess and me listen to a
recording on his phone. It’s beautiful. He has talent. He also shows artwork, a
pencil sketch of a child, which is beautiful and haunting.

To lighten the conversation, I ask (on camera) do you… ride a
motorcycle? And I picked at his leather jacket. He started laughing, and I said
I know you Nepalese boys and your motorbikes! He said he used to but not any
longer. Such a sweetheart. He needs surgery. The
main problem? He has an inhibitor. Life has dealt this young man a double blow
but still he smiles and has dreams. I want to help him get surgery.

After
the Bir Hospital we drove to the Nepal Hemophilia Society office, in the
residential district. Some wiry teens were playing cricket in the street; birds
chirped, the sky was overcast and the air cool. Inside was crowded. They had
built out the office, including a new cold room, to store the donations from
Biogen; this means they could easily handle our proposed 4 million IU donation.
Manil Shrestha (also a patient) and his team are doing a great job. We asked questions, Believe Ltd. filmed… all good material for the documentary.


Mani suggests we go to “KFC,” which
we all think means Kentucky Fried Chicken. We scuffed across the dusty street,
to the main street, with cars, motorbikes and trucks bulleting past us. It’s
very dangerous to cross. Up the high curb (we have to help one another) and
into KFC: Kwik Food Café. I’ve eaten here before. The bathroom sported a squat
toilet, which is actually hard for patients with hemophilia to use–just think about it. Nepalese food is excellent and we down dumplings (called momo),
French fries, noodles, vegetables and Cokes. The talk is happy and light, and
everyone has a good time.
On the way back I witnessed a tender moment seeing Patrick
chat with Beda Raj, a board member and also patient, and hold hands, which is the custom here among close male friends. Patrick is a rising star in our community: driven, ambitious, articulate, with a kind heart and compassionate soul. He
lost his 18-year-old brother Adam and it has impacted him greatly. Afterward,
we head for the Shanker hotel, and have dinner together at 7 pm. Everyone has Everest
beer and I have wine, and we share stories from the day.
Wednesday
March 29, 2017
Today was filming at the temple day.
It was rainy, which was disappointing, but then the air was remarkably cleaner
and easier to inhale. We start our day in the dining room together, and I enjoy
a breakfast of eggs, croissants, muselix (delicious), fresh watermelon and
mango, and steamy masala tea. Everyone is obsessed with their photos and we compare them.

Then off to Swayambhu, the “Monkey Temple,” close
by. We draw a crowd because of all the camera equipment. The focus is entirely on Chris; making a pilgrimage to this most famous of temples, in preparation for his climb. I feel very much at peace in Swayambhu. The colorful prayer flags
dance in the wind around the stupas with the painted eyes of Buddha watching. Stray
dogs, their tails eternally curly, strut about in the rain or sleep at the base
of the stupas or even inside the arch of the little temples to escape the rain. Bold macaque monkeys leap and swing overhead, fighting with one another, scanning
for food. They are a rough lot; some are missing patches of fur, and one is
actually missing a nose. One baby has a mangled leg he drags about. Birds chirp
and somewhere a cuckoo chimes.

I eventually walk up to the next
level, where the gift shops are. The rain is pelting but I have an umbrella and
water-proof camera. I’ve been here twice before and so just enjoy it all. Other
trekkers are here, maybe German. I’m intrigued as always by the Hindu masks on
display. Jess and I meet up and I film her spinning the prayer wheels. 
Chris is a little self-conscious with a crowd staring, cameras in his face and a boom mike over his head, but who
wouldn’t be? He didn’t set out to make a documentary, only to climb the Seven Summits
for a cause–Save One Life. Shy by nature,  he comes across as
authentic, humble, and people will be drawn to that. So soft-spoken but a core of steel!
I watch the Nepalese light incense
at the temple, and candles at another temple. A monkey bolts up, grabs an
offering of food meant for the gods, and scoots away. They are fast and mischievous. There’s still
earthquake damage, manifested in cracks in the buildings and piles of bricks which is so sad at this ancient of sites. The rain came and went, as we walked about. It took a while to get the tickets, and we stood on a street corner watching all the people walking by. Women with lined faces and colorful but damp saris tried hard to sell us trinkets: bracelets, necklaces, purses. “Good price I give you,” “Madame for you?”

Finally, Patrick, always with a smile and optimistic air, has our tickets and we enter. Old, beaten, the square is a relic of palaces and princes from long ago. Piles of bricks mark the way, old woman sit on wet rugs to sell souvenirs, and hundreds of pigeons swarm one small square. Rob is fascinated with them and takes excellent shots. A massive stone carving of Kali Bhairav dominates anther square, and it’s stunning. Bhairava is called a protector, as he guards the eight directions of the universe. In all Hindu temples, there will be a Bhairava idol. The Hindu faith is very complicated with gods taking all sorts of forms; but the stories are beautiful and the god manifestations are so interesting.
Despite all our differences in culture, religion, ethnicity, location, we have one major uniting thing: hemophilia. Chris, as a person with hemophilia from the US, represents the ultimate life that the Nepalese could one day have: freedom from disability, life with factor available, hope to accomplish their dreams, which could be as basic as just going to school or university. Chris’s dream is to reach the summit of Everest and eventually finish the Seven Summits. I think he embodies the Nepalese proverb “Aim to fly and touch the moon together”, or in this case the summit of Everest!

Off to Nepal.. and Everest

I’m sitting at Gate 11, Terminal E, waiting for my flight to Nepal, and just remembered I didn’t lock either of my checked bags. I never forget something like that. I’m a bit distracted: my head’s on the upcoming climb to Everest base camp. Everything else is packed: climbing gear, boots, trekking poles, layers and layers of clothing (base layer, mid-layers, outer shells), medicine to cover all typical ailments including altitude sickness and bronchial infections, expedition sunglasses, hats, bandanas, gloves and liners… somehow it all fit into the North Face Base Camp bag with room to spare. I filled that room with donated stuffed animals for the kids in Nepal. hopefully it will all be there when I arrive in Kathmandu!

How are the kids in Nepal? We have about 100 of them registered with Save One Life and track their progress through our program. Nepal is one of the world’s poorest countries, and yet it has a stellar Nepal Hemophilia Society run by people with hemophilia. For the beneficiaries of Save One Life, we check to see if they have enough income, are in school, and whether they get treatment for their hemophilia. We have many prominent sponsors in our community who fund these families.
Laurie Kelley with Youth Group, Nepal Hemophilia Society
September 2015
The country suffered a devastating earthquake on April 25, 2015; several members of the hemophilia community died. The hospital was damaged; homes left in piles of bricks. I toured the earthquake damage when I was there in September 2015, and realized in the global hemophilia community there is no emergency response protocol or team. It doesn’t happen often, but in earthquake prone areas like Nepal, it would be a good program to establish.
See my trip to Nepal 6 months after the earthquake here. 
I’m looking forward this coming week to meeting our kids again, seeing what the needs are, how they have managed. We raised funds shortly after the earthquake with the massive help of the Mary Gooley Center in Rochester, New York, to help with housing and necessities. Patrick James Lynch and his team at Believe Ltd. is coming on this trip as well to make a documentary about life in developing countries, through the eyes of Chris Bombardier, a young man with hemophilia B from Denver, Colorado, who will be the first person with hemophilia to attempt to summit Everest!
I’ll be with Chris this week as we tour homes and the hospital, and visit the earthquake areas. Then Chris, his wife Jess, photographer Rob Bradford and I all head out for Everest base camp on April 2 with renowned guide Ryan Waters of Mountain Professionals. Ryan has accompanied Chris on four of his Seven Summits. Everest will be Chris’s sixth summit… and that would leave Mt. Vinson in Antarctica.
Chris infusing on a summit!
Chris would have summited Vinson by now, but he was denied access! Why?

Because he has hemophilia–a “disability.” Huh. Chris has a few things to show the guys in Antarctica. 

Chris also has a few things to show his peers in developing countries. The mountain is a metaphor for overcoming any challenge. You can’t get anywhere in life unless you first set your sights on a summit; get the right equipment; train, train, train–success is hard work; map your route; get a guide; then go.
Waiting to see this on Everest!
Go Chris! We wish you success and safety, and everyone thanks you for your heroic efforts on behalf of people with hemophilia everywhere!
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From the bottom of our hearts and hiking boots we wish to thank Octapharma for completely funding Chris’s climb, and Believe Ltd.’s documentary. While there is no amount of money that can compensate Chris for his time and personal risks, none of this adventure and effort would be possible without Octapharma’s generous support and more importantly, its belief in Chris and Save One Life. Chairman Wolfgang Marguerre has been one of Save One Life’s biggest supporter and sponsor of children with hemophilia in developing countries. He truly believes in our mission. Thank you Mr. Marguerre and all your colleagues, including Flemming Neilsen and Carl Trenz, for your help and support!

If you would like to sponsor a chid in need, visit www.SaveOneLife.net to learn more. Together we are improving lives with hemophilia…one at a time.