Anticancer

Last blog post

Tue, 26 Feb 2013 15:37:10 -0500

Thank you to those of you who came from near and far to celebrate Niko’s life together at the memorial on Saturday, and all of you whose love was felt from afar. It was a beautiful tribute and everyone who joined in made it truly special.

It’s now time for us to put this blog to bed. Over the years it has informed, galvanized support, communicated gratitude and shared the good and bad times that we’ve had. Even though we won’t be writing here anymore, we know that we have a loving community around us who will help us communicate those things each and every day from now on. Niko will live on through all of us, and our shared memories and love for him. He will be deeply missed and never forgotten.

To those who come across this blog who didn’t know Niko personally: we hope, despite the difficult times and sadness expressed in some of the posts, that the resilience, love, and determination of Niko and his community of supporters will be an inspiration to you and your loved ones in your struggle against cancer.

With love,

Eleni Sr, Eleni Jr, Kosta
February 26, 2013

This eulogy was read in tribute to Niko at the two memorial services we held.

Niko Harlan

August 21, 1979 – February 5, 2013

Niko was a good bowler, and a good man. He was one of us. He was a man who loved the outdoors, and bowling … and he loved a good awkward joke, like that quote from his favorite movie The Big Lebowski.

Many of us in this room came to love Niko and met him through his humor and his wit. Humor was an important way for Niko to connect with people, and he wasn’t afraid to use it to weather a solemn situation. His humor helped carry him through some of the most difficult periods in his life: for many people, the way Niko first introduced his cancer to them was through an inaugural blog post, titled “No news is good news. Unfortunately I have news”.

The fact that Niko felt able to diffuse the tension of such a difficult diagnosis with a joke says a lot about his attitude to life and his trust in the people around him. The memoir that Niko’s grandfather (and namesake) wrote frequently has the phrase “You could either laugh or cry” when describing scenes of devastation from World War II and the Greek Civil War. Niko loved that phrase, and when facing adversity, he often chose to laugh, but also shared his tears with those of us in this room.

Niko was born on August 21, 1979 in New Orleans. Being born in America, he was the only Harlan child eligible to run for the presidency, and that wasn’t the only reason he set the bar high for his younger siblings. At school, Niko was known as the brightest and smartest kid in the class, a spelling bee champion and a charmer of every teacher who met him. He had a love for learning and a thirst for knowledge that he carried throughout his life. Niko was always reading, and was never able to just leave avenues of enquiry unexplored. Anyone who introduced him to a new topic of conversation, or a new idea, had to be prepared to undergo a thorough grilling, as Niko made sure that he left none of his questions unanswered.

This was also his approach with people - any person he came across, he was interested in learning about them just for who they are, regardless of how or where he would meet them. It’s no surprise then that he met one of his best friends on his first day of college (Luke), and another randomly at a bar (Elizabeth). But he made connections with people in so many ways. Whether it was on the field playing pick up soccer, the lo-lai court on Duke’s campus, or coaching the Duke Women’s rugby team (which he said was “either a brilliant or terrible idea, only time will tell”), Niko made lasting connections with people who loved him and supported him throughout his life.

We didn’t want this eulogy to be all about Niko’s illness. But we wanted to say a few words about the difficulties he faced.

Niko started his fight against cancer on his own. When he was first diagnosed, he just wanted to live a normal life, and not let the tumor get in his way. It was only when people started questioning if he was on drugs because he wouldn’t drink at the bar, that slowly he started to share his diagnosis, treatments, and the symptoms he experienced with friends and family. This started with just a few close friends helping out, and ended with a community which the people in this room today represent. This was the beginning of a personal transformation for Niko and he blossomed over the next few years. He made a conscious decision to take everything in his stride, go out and meet new people and make new friends, and bring his family closer together.

Anyone who gets a diagnosis of cancer must be struck by the sense of injustice that they’ve been the one fated to suffer this horrible disease. Niko had his low points trying to come to terms with that, as any of us would. However, he displayed great strength and resoluteness when it came to taking treatments, participating in experimental therapies thousands of miles from home, and having life-altering surgery. He made every treatment decision with the hope of a better quality of life and of beating the disease. He knew dying was a possibility but he was determined to live, to be on the “tail end of the curve”. And in the end he was: he beat the odds many times over and outlasted the expectations of many doctors.

We found this eulogy hard to write and it’s fitting that Niko, who always chose his words so carefully and eloquently, got there before us with the right words to say. Here is an excerpt from his first blog post that he wrote in December 2009 to tell people he was going to have brain surgery:

In dealing with this disease I’ve had a few epiphanies about my life. An important one was recognizing how important my friends are to me. In the midst of one sleepless night spent confronting my mortality I had a revelation. Of course I knew that everybody dies, but now it hit home that I would. Me! Not the guy in the hospital bed on TV. Me. Special, center of the universe me. I’ve found only one way of dealing with this terrible truth. Of course I will die. Everyone does. The cancer might kill me. I could be crossing the street and get hit by the proverbial bus. I just happen to have some extra information about the uncertainty we all share. Where does this leave us? I have a limited amount of time here; how can I best spend it? How can I make the most out of every single moment? I had to consider what is important to me. First, my day-to-day activities - work, hobbies, etc. Second, and of vastly greater significance, my friends and family. I’ve struggled and struggled for a way to articulate why and how this is, but without success. Someday I’ll be able to put it into words. For now the closest I’ve come to expressing this feeling has been hugs and tears, sorrowful and joyful.

All of us here know that Niko succeeded in expressing this feeling, and he knew it too. He put it into words and deeds that have changed all of our lives. We felt, and will feel, his love every day.

This poem was written by Miranda Cambanis, Niko’s “second mother” in Durham, and was read at both memorials.

Letter to Niko

In the late morning, over coffee and fresh bread,
you and I play tavli in Egina
basking in the blue warmth of Saronikos
you loved so very much.

With that enigmatic smile of yours,
you let me win
and we both laugh with delight
because that’s who you are,
a messenger of life, rooted in kindness.

But in the dying time,
our geography falters,
our dreams capitulate
and the secret compass we once invented
for our journey,
abruptly points to zero
like a pool of blood on the face of the moon.

In the middle of the night, my phone rings
and I know, I know the familiar, shuttering darkness.
The Achillean shield of love around you,
became thinner and thinner with each breath
until it gently surrendered to the intruder
you valiantly fought for so long.

In the now empty room,
everything orderly, almost intact,
yet, everything broken in millions of splinters of grief
beyond recognition of life.

Where do we go from here, how, where..

The harsh inevitability of your absence
coldly stares down on our rapid fingers
as we try to break the grey vault of pain
that seems impenetrable..

And yet, the music and the people you loved
are here, eternal tide and testament.
As long as we breathe, we will keep you from dying
the only real death:
that of being forgotten.

And so, today, I stand here in awe of everything that was you,
celebrating your defiant struggle
your long short life
your legacy
the immensity of your innocence
the brilliant transparency of your soul.

My heart stutters its farewell
through crystallized tears.

From here on, there has to be
more feather than stone,
lighter than air water or denial.
From here on, we must begin to heal
breaking pomegranates
in the centre of the wound.

- Miranda Cambanis, February 7, 2013

The following videos are of two of the songs performed at the Celebration of Life memorial for Niko.

California Stars

I’ll fly away

This is the obituary we wrote for Niko that was published in the Herald-Sun.

Niko Harlan

August 21, 1979 - February 5, 2013

DURHAM — Niko Harlan, 33, who lived in Durham the past 16 years, passed away at home in the early morning of February 5 after an 11 year struggle against brain cancer. His loved ones were at his side when he passed away.

Born of a Greek mother and American father in New Orleans, La., Niko grew up in Dhahran, Saudi Arabia. In school, Niko was known as the brightest and smartest kid in the class, a spelling bee champion and a charmer of every teacher who met him. He was a tough act to follow for his younger siblings! Niko attended Phillips Academy in Andover, Mass. for high school. He moved to Durham in 1997 to attend Duke University, graduating in 2001 with a bachelor’s degree in computer science, and worked for several years in the information technology sector in the Triangle. A fluent Greek speaker, he spent many summers at his family home in Greece, where he also hosted a number of close friends.

Niko was an avid soccer player and his regular pick-up soccer group organized the Niko Cup Against Cancer for him in 2010 to raise funds for medical treatments. He also loved rugby, playing on Duke’s undergraduate and graduate teams, before moving to coaching the Duke Women’s Rugby team for four years. He was a loyal Duke Basketball fan and for a brief period worked the scorer’s table for the men’s and women’s games.

Another big part of Niko’s life in Durham was the local music scene, and he was a big supporter of local bands and musicians in the Triangle. Through local music shows he became part of a close knit community of musicians and music lovers alike. This community rallied behind Niko during his illness, raising awareness and funds for him. In 2011 his friend and local musician Jay Kutchma lead a music fundraiser for him in Durham.

Niko was diagnosed with brain cancer in 2001 and for the next 11 years, waged a tremendous struggle against his cancer. He displayed great strength and resoluteness when it came to taking treatments, participating in experimental therapies thousands of miles from home, and having brain surgery three times. He made every treatment decision with the hope of a better quality of life and beating the disease. He knew dying was a possibility but he was determined to live, to be on the “tail end of the curve”. And in the end he was: he beat the odds many times over and outlasted the expectations of many doctors.

Niko lived his life with humor, compassion and wit in the face of much suffering; the transformation he underwent in coming to terms with his disease and the changes he made to how he wanted to live his life were remarkable. During the 11 years he lived with a brain tumor, he made it his mission to live his life to the fullest and in the process touched many people’s lives. He will be remembered for his insatiable curiosity and thirst for life, knowledge, and understanding of the world.

Niko is survived by his loving family here in Durham, and in the hearts of so many people whose lives he touched.

A memorial in celebration of Niko’s rich life will be held at Motorco Music Hall in Durham on Saturday, February 23rd between 12 and 3:30 p.m., with a commemorative program starting at 12:30 p.m.

In lieu of flowers, memorial contributions in memory of Niko can be made to UNC Hospice and A Helping Hand, organizations which made an enormous impact on Niko’s quality of life; donations will be used to provide services to those without insurance or with low income.

Condolences may be sent via comments on Niko’s blog.

Celebration of Life Memorial on Feb 23

Wed, 13 Feb 2013 11:12:00 -0500

Dear friends,

We would like to invite you to a celebration of Niko’s life on Saturday, 23rd February at Motorco Music Hall in Durham (here is a map).

The event will start at 12pm and end at 3:30pm. The service will begin at 12:30pm. Black is not required but please dress your best for Niko.

We look forward to seeing many of you there to share stories and memories of Niko’s life. We’ll have a memory book that you are invited to write a story or message in, and you are welcome to bring photos that can be placed in the book as well.

We’ll have limited time during the event; if you would like to speak during the event, please let us know in advance so we can try to work it into the program.

With love,

Eleni Sr, Kosta and Eleni Jr.

Update: If you are planning to attend, please click here to RSVP. This will help us get an idea of the number of people we should expect.

Donations and flowers

Wed, 06 Feb 2013 15:28:20 -0500

Thank you to everyone who has reached out to us, we really appreciate the many loving messages, donations, food and flowers.

If you would like to donate, please consider giving to one of the organisations that have helped all of us along the way. If you make a donation please make it in memory of Niko Harlan.

UNC Hospice

UNC Hospice provided wonderful support and care to Niko and all of us in the last weeks of his life. They are a registered non-profit organisation and they use donations to provide care to people who don’t have insurance coverage, and also for their grief counselling programme which is provided free of charge.

http://www.unchealthcare.org/site/hospice/donations

A Helping Hand

This organisation provided companion care to Niko and us this past year free of charge. Our volunteer companion Jake has become a good friend and been a comforting presence in our lives.

http://ahelpinghandnc.org/charitablegiving/

Miracle Flights for Kids (and Niko)

This organisation provides free or subsidised flights to people who need to travel to receive medical treatment. They provided free flights for Niko and us to travel to LA many times so that Niko could take part in a clinical trial there.

http://www.miracleflights.org/

Mercy Medical Airlift

This organisation also provided free flights to Niko and us to travel to LA for clinical trial therapies.

http://mercymedical.org/

Continental Care Force

This is a one-man organisation, ex-pilot Bob makes a difference in so many people’s lives by getting them flights through airmiles donated to the programme. If you have Continental airmiles you would like to donate, call 281-261-6626.

Celebration of Life

Wed, 06 Feb 2013 12:53:56 -0500

Dear friends and loved ones,

We are touched by the outpouring of support and love we have received from all of you.

We wanted to let you know that we will hold a Celebration of Life memorial service for Niko on the afternoon of Saturday February 23, in Durham. We will post again when we know the time and location.

With love,

Kosta, Eleni Jr, Eleni Sr and Tamara

Goodbye Niko

Tue, 05 Feb 2013 05:19:20 -0500

This morning at 1:40am Niko passed away, we were right by his side during the process.

We will write more in the next few days about a memorial service. In the meantime we are not ready for visitors. Please contact Elizabeth if you need to get in touch with us: 919-619-8688

Love,

Eleni Sr, Eleni Jr, Kosta, Tamara, Elizabeth, Miranda, Luke

Update on Niko

Mon, 04 Feb 2013 11:44:26 -0500

Hi all,

Since our last post Niko’s health has continued to decline rapidly. He is now entered his last stage of life. Niko is sleeping more and more, sometimes over 24 hours at a time, he’s not eating anymore and taking in a few drops of water each day. The hospice nurse thinks he may have a few days or maybe a week left to live.

Niko’s sleeping patterns are unpredictable but he’s had some really good visits over the last few weeks. If you do come over, short visits of 20-30 minutes are best for us. If you want to bring us food, simple vegetarian meals or soups, or just some fruits & vegetables, are appreciated.

Thanks for supporting us in this incredibly difficult time.

Kosta, Eleni Jr & Eleni Sr

Update

Wed, 23 Jan 2013 12:52:34 -0500

Hi everyone,

Things seem to be moving very quickly here. Since our last post, Niko has had one of these new types of seizures nearly every day. They usually last 2-3 hours. The good thing is that they do not seem to cause Niko any distress or discomfort. We usually get him into bed, then read to him for a while until he falls asleep. Sometimes he is able to communicate and sometimes he has difficulty doing so.

It’s almost certain that these new types of seizures are caused by tumor growth. Our understanding is that when the tumor presses against healthy brain tissue, the healthy tissue inflames and the seizures are the physical effect of that. It’s almost as if they are ‘shock waves’ rippling through Niko’s body.

Niko is also sleeping a lot more now. He is usually up for a couple hours in the day, and a couple more in the evening, 3 or 4 hours overall throughout the day. When he is awake, he is usually in a good mood though, and is engaged and sharp witted as ever. Sometimes he does get confused or is too weak to talk much though. He is also starting to experience some trouble swallowing so we are trying to have softer foods that are easier to swallow and digest. If you do want to bring us some food, the best thing is fresh fruit.

Visits

Niko and all of us still love having visitors. We try and keep a quiet and calm environment, keeping noise levels low. Please be sensitive to when he is sleeping as sound carries. When Niko is up though, it’s better to keep the visits short, like 10 or 15 minutes so he does not get too tired.

If he has a seizure while you are visiting, just stay calm and quiet while we get him into bed. You can then stay and read to him for a little bit if you want to. If there’s something you would like to read to Niko too, let us know and we can try to sort that out.

Thanks to everyone who has written, stopped by or called in the past weeks. We feel very supported by our community of friends in this tough time. We’ve also switched hospice providers to UNC Hospice, and they have been excellent, which is a big relief.

Hospice

Fri, 11 Jan 2013 10:40:31 -0500

Tough start to the new year. The January 1st ER visit and the 3rd week of the chemo cycle have really wiped Niko out. Over the past 10 days we’ve seen a steady decline in his strength and cognition, and a new unpleasant symptom, hallucinations.

We decided to start hospice care for Niko a few days ago because we really didn’t want to go to ER again, and our GP said that would be the best way to avoid going. The hospice social worker and nurses have mainly been very good and it’s nice to have an extra level of support between the GP and the emergency room. We are also getting more help in the house with hospice.

Unfortunately Niko is continuing to decline and on Wednesday we went to ER for the 3rd time in a month after Niko started choking on a piece of cantaloup during dinner. The choking fit passed by the time we got to the hospital and the chest x-ray didn’t show it was lodged in his lungs, thankfully.

Yesterday Niko was understandably exhausted and after a very difficult day, the evening ended with Niko having a big seizure – same symptoms as January 1 so we were able to recognize it for what it was, give Niko some fast acting anti-seizure medicine, and avoid another ambulance trip to the hospital.

We’ve been really fortunate to have so many friends and loved ones supporting us during this time. Thank you to all of you who have stopped by, brought food, spent time with us, sent text messages or called; you’ve helped us so much.

Happy New YeER

Wed, 02 Jan 2013 21:28:56 -0500

We had a really nice time over the holidays, saw lots of friends and loved ones, spent time with family, played games, and enjoyed numerous sweets. But all good things have to come to an end, and on New Year’s Day, Eleni Jr. and Nick went back to London. (Eleni Jr. will be back in Durham in three weeks.)

A few hours after Eleni and Nick left, around 8:15pm, Niko started having a seizure. At the time we didn’t recognize it as one because the symptoms were different from seizures he’s had in the past. The doctors at the Brain Tumor Center worried he was having a stroke or brain bleed, and we were alarmed by the symptoms, so we called an ambulance and went to the ER. They did a CT scan and determined Niko wasn’t having a stroke, and at 2:30am we were discharged and went home.

Niko is better today, he was really exhausted, but glad to be back at home. And we are all thankful for the support we received from so many of you - thank you for being there for us, and especially to Tamara, Kara and David for coming to the ER and helping us there, and to Elizabeth and Julie for organizing help at the house while Eleni Jr. is away.

Here’s hoping the new year gets better from here!

Merry Xmas from all of us!

Tue, 25 Dec 2012 20:46:30 -0500

Merry Xmas from all of us!

Mostly stable

Thu, 13 Dec 2012 12:31:00 -0500

Earlier this week, Niko had a MRI. We were very relieved to hear that the scan looks ‘near identical’ to the last one, so he can continue with his current treatment. There is still a small amount of growth but it looks like the chemo has slowed it down for the time being, and we can look forward to enjoying the holidays.

We are really glad to hear that the treatment seems to be doing something. We had all certainly prepared for the worst, especially after Niko had a really big seizure the week before. Apart from that, Niko has had a lot of pain and he is trying out some strong pain meds to help with that. Hopefully it will help, but it may also make him very drowsy.

Niko’s next MRI will be at the end of January when he finishes the next chemo cycle. In the mean time we have reached another milestone- this time last year, Niko, Kosta and Eleni Sr flew to LA to start the Tocagen clinical trial. They flew back on Christmas eve. It’s a nice feeling to start the holiday season without any medical news this year.

Update: three hours after I wrote this, Niko had shortness of breath and we were on our way to ER to make sure he didn’t have a blood clot in his lungs. We are still here, 16 hrs later… I’m pretty sure I jinxed it with the last sentence of the post!

Update 2: We’re back home now, got out of the emergency room after an exhausting 20 hours. They couldn’t figure out why Niko had shortness of breath but we didn’t want to stick around any longer, since Niko was doing better.

Giving thanks

Fri, 30 Nov 2012 15:30:33 -0500

Last week, I (Eleni Jr) celebrated Thanksgiving for the first time since I was a young teenager. Since moving to the UK, I’ve always been amused when colleagues asked me if I was going to take the day off on a Thursday in November- yes, sitting at home and eating a whole turkey to myself and watching a sport I don’t understand, with no yanks around to explain it to me, didn’t sound worthwhile! So this year it was really special to get to be with my family- and I did indeed take the day off.

True to no tradition whatsoever, we had a fantastic slow cooked BBQ brisket (thanks to our friend Tony for the inspiration) and lots of other lovely things. Here’s a picture of us gathered around the dinner table, with our friend Deb:

Three months ago I decided to temporarily leave my home in London to spend some quality time with my family. I have a lot to be thankful for, to all the people that have made this possible, including my partner, my employer, my family and my friends. They have all made things a little bit easier for me and for our family.

The day after Thanksgiving I flew back to London for a short trip home, thanks to two good friends who used their airmiles to buy me the ticket. I’m lucky to have two homes, both alike in being full of wonderful people.

CCNU round 2

Fri, 02 Nov 2012 11:31:05 -0400

Earlier this week Niko had a MRI and yesterday we had the results from the Brain Tumor Center.

Although the tumor hasn’t spread much, it does look more enhanced in the area where it already was. His oncologist described it as more of a qualitative than quantitative change- while the tumor is larger (about 25%), it isn’t dramatically so, but the brightness on the scan is much more prominent.

Niko has been steadily declining with his physical strength on his left side over the last two months. But in terms of mental sharpness and energy, he is actually doing okay and seems better than he was 2-3 months ago.

Niko wants to continue with another cycle of CCNU starting this week. He took his first dose 6 weeks ago, which was a half-dose, which he tolerated quite well. This time it will be at 75% strength.

In other news, we have had some lovely visits from friends brightening up our days, including a private rock concert from Red Collar. Apparently, it isn’t the weirdest venue they’ve played- we’ll take that as a compliment!

Run, Mimi, Run!

Sat, 20 Oct 2012 11:58:26 -0400

We’re honored and touched that our friend Mimi is dedicating her running a half-marathon this weekend to Niko. The half-marathon, Ramblin’ Rose, is to raise funds for the Duke Cancer Institute.

Mimi wrote a very moving post on her fundraising page, here is an excerpt:

The Ramblin’ Rose race in Durham on 10/21 is to benefit the Duke Cancer Institute. Duke is known as a leader in both cancer treatment and research.

Unfortunately too many of my friends have had to learn about Duke’s excellent services first-hand. Cancer is a brutal, non-discriminatory disease. I wish it were permanently gone from our list of enemies. Researchers like those at Duke are trying to make that happen.

Let me tell you about my friend Niko. I met Niko about 5 years ago. I met him through the music scene. He is an avid live music fan, and loves many of the same bands and musicians as I do. We share many friends and experiences. Niko is very intelligent and one of the wittiest jokesters I know. We share a common love of the pun, and would sit and laugh at eachother’s stupid attempts to out-cornify each other.

Niko has battled a brain tumor for the entire time I’ve known him. He has undergone innumerable rounds of chemo, radiation, surgeries, scans, appointments, pills, and risky never-been-tried before treatments, flying across the country for the chance to perhaps beat this ravaging disease. I have been inspired by his courage, tenacity, and general unwillingness to give up when most would.

I am dedicating this run to my friend Niko and his family. I will think of you all as I run and walk this race, and send intentions of peace and well-being for the Harlan’s. You are all an inspiration to me.

Please visit Mimi’s fundraising page and support her in this run.

Thank you as well to our friend Mike who ran a 5K last weekend, also in honor of Niko, and to raise funds for cancer research at UNC.

We are inspired by the community of support around us and are thankful for all that you do to keep us going. We’ve been very fortunate to have so many friends and loved ones visiting on a daily basis and we want to let you all know that we appreciate you!

Kosta and Eleni Sr.

CCNU

Tue, 18 Sep 2012 21:34:00 -0400

Hi friends,

Sorry for the radio silence the past weeks. The bottom line is that tomorrow Niko will start a new chemotherapy, with the hope that it will give him a few extra months of good quality of life and halt the tumor temporarily.

Here are the details…

Since our last post, we have been having a lot of discussion with doctors and amongst family and friends about what to do now. Two weeks ago we met with Niko’s neuro-oncologist at Duke, who talked to Niko about what options he has at this point. The doctor felt that surgery and radiation are not options because of where the new tumor growth is (the new growth is about 3cm x 2.8cm located in the corpus callosum, the part that links the left and right hemispheres). He also thought Niko should stop the chemo and Avastin he was taking, as the tumor progressed while he was doing these treatments. He offered a few chemotherapy options, and that it depends on how aggressive Niko wants to be at this point. Another option would be to stop treatment and just enjoy the time left.

The chemotherapy options all offer about a 20% chance of slowing down the tumor growth, but not killing it. A best case scenario would be stabilising the tumor for a few months, before it grows again. A worst case scenario is the tumor could end his life in a few months.

After many difficult discussions, Niko weighed the pros and cons and very clearly felt he is not ready to give up, he wants to keep fighting. So he will start a new chemo tomorrow, called CCNU. It is just one pill every six weeks, so it must be one hell of a pill. The main side effect is that it hits your blood counts three weeks in which could make Niko very fatigued and vulnerable to infections. But the doctors all feel this would give Niko the best shot at prolonging his life and not affect the quality of his life too much.

We have had some lovely visits from friends that have been so wonderful both for taking our minds off these difficult subjects, but also helping us find ways to discuss them. Thanks to those of you who have taken the time to brighten up our days and show us some much needed support.

Niko has been doing quite well cognitively as of late, and has more energy since he hasn’t been doing treatment the last 5 weeks, so the next few weeks is a good time to visit and spend time with him (unless you are sick in which case please wait until you are better), we’d love to see you all!

- Eleni Jr, Eleni Sr, Kosta

Bad news

Sat, 01 Sep 2012 10:43:00 -0400

Yesterday morning Niko went in to the Cancer Center for an MRI. Late yesterday afternoon we received an e-mail from Niko’s oncologist at the Duke Brain Tumor Center:

Kosta, The MRI shows tumor growth that has extended across the middle of the brain. We should stop the Avastin and the etoposide. He has already been on many of the medicines we use in this setting. I will review his record and try and come up with something we could use.

We are upset by this news and still trying to get our bearings. We had noticed some increased left-side weakness and other neurological problems over the last few weeks, but this still came as a complete shock to us.

At our appointment on Tuesday we will see the scan and find out how much growth there has been, and if there are any treatments we could try. Unfortunately when we last discussed alternative treatments a few months ago, there were not any.

Eleni Jr. is coming into town on Monday and will be here for at least a few weeks, we are really looking forward to her visit.

In the past month we’ve had a lot of people come by to visit with Niko for his birthday month (including a wonderful weekend with the same cast of characters from the June reunion), it’s been so nice for Niko to see and talk with you all. The next few weeks will undoubtedly be difficult as we adjust to a new phase in fighting this horrible disease, so your support is more important than ever - please stop by for a short visit if you can, it would mean a lot to Niko and us.

- Kosta & Eleni Sr.

Niko's birthday month!

Mon, 13 Aug 2012 11:51:02 -0400

Dear friends,

Niko’s birthday is this month (21st Aug), as most of you already know.

Although Niko loves seeing his friends, it has been more and more difficult for Niko to be in a large group setting.

So we thought that we would try to celebrate his “birthday month” this year, by having 1-2 people at a time visit with us.

Please let us know when would you like to visit, evening between 6.30 - 8.30pm seems to be best.

The only days when Niko will not be available will be 21st and 22nd August.

Love,

Eleni

Join our support team!

Thu, 02 Aug 2012 09:42:29 -0400

Over the years we’ve had a lot of support from friends both near and far. The last few months, though, the core caregiver team has become pretty stretched. So we are trying to find things that can help us so we can take better care of Niko.

A friend gave us a recommendation for the Support Teams at Project Compassion. From their website, support teams:

offer practical, emotional and spiritual support for people living with illness and caregiving
create meaningful community for people living with challenging health conditions
empower individuals to remain in their own homes longer
engage community members of all ages in caregiving support as part of living meaningful lives and creating livable communities

The idea is that the caregivers come up with a list of 6–12 people (the support team) and pass that on to Project Compassion. They’ll provide an orientation meeting for the support team, which will be about 1.5 hours long, and act as “coaches” for coordinating care and support for Niko and the caregivers. Things like scheduling days when people will stop by to visit, or bring dinner by, or help out with gardening or some house cleaning, and so on. Then each month there will be a meeting for the support team where they’ll evaluate how things are going, and make adjustments to the support schedule (you can phone in to this meeting if you can’t attend in person).

All told, each person on the support team will probably put in a couple hours of their time each month to make this happen. Commitment is flexible and depends on what you feel you can contribute.

Having an organized support team would be a really big help to us right now. If you’re interested in joining our support team, please drop us a line and let us know. And if you have questions about time commitment or more about what’s involved please let us know that too.

Thank you

Fri, 20 Jul 2012 09:41:32 -0400

Thank you to everyone who responded to our last post requesting help with fundraising. Because of your donations, we were able to move forward with widening the bathroom door so that we can walk in easily with Niko, or move the wheelchair through if need be.

We’re grateful to have so many friends coming by to visit, and the wonderful dinners you all have prepared and meals that you’ve shared with us.

Eleni Jr. left on Tuesday so we are adjusting to the situation without her again but looking forward to another visit from her soon. It was a wonderful visit from Eleni. It’s easy to get caught up in a routine of appointments and treatments and medication schedules – and that continued – but we also made time for many special moments together as a family, looking at old photos and telling stories. It’s something we are trying to be more conscious of, how to schedule “quality time” along with the routine of not-so-fun medical essentials.

In treatment related news, Niko started another round of the Tocagen clinical trial drug, 5-FC, and when he is done with that in 5 days he’ll move on to his next cycle of chemotherapy. We’ll keep you posted on the blog, in the meantime, please keep the visits and messages coming - you can e-mail or text Niko directly or you can send them to Kosta or Eleni Sr.

-Kosta

Ever onwards

Fri, 13 Jul 2012 23:40:18 -0400

Niko had a MRI scan this week. The scan came back looking about the same as the last one, but what is more of an indication is how Niko is doing physically and cognitively. So we did have a conversation with his oncologist about how he thinks Niko is doing clinically.

It is impossible to tell what will happen in the next six to twelve months, but we are at a juncture where even if Niko does not deteriorate more, he is unlikely to get better either. The most likely thing would be that Niko will continue to decline but the pace of decline is unknown. There is also a possibility the cancer could be terminal in the next six months.

These are not easy things to hear, and less so to talk about. It is dawning on us that we need more help and more professional support particularly in the home. We are trying to find a good primary care doctor (GP) who can take an overview in how Niko is doing and coordinate with his cancer care team. Only now that we are looking do we realise that it’s quite odd that we have gone this long without a GP involved. It’s going to be challenging for them to jump in at this stage so we are looking for someone who has that time to devote to Niko and really be involved. So if any Durham folks have recommendations let us know!

We are also trying to get some help in the home. We need help with Niko but also to support Eleni Sr and Kosta too. We are looking to get some housekeeping support and also a care assistant a few times a week. Apart from the cost, it is difficult to determine how many hours and how many times a week would be best, but we are going to give something a try and see how it goes from there.

The occupational therapist also recommended we adapt the bathroom to make it easier for Niko to get in and out of there. We need to widen the doorway and replace the door with a sliding door or similar to open up the space. Again, we would welcome recommendations if you know someone who could help!

There are going to be a lot of costs associated with these new things. We have thought about it a lot though and we feel these would make a big difference to Niko’s (and all of our) quality of life in the next six months. Here are some ways you can help us too:

- donate $20 a month for the next six months. This will go towards our increased medical costs and support services, and help us plan ahead.

- commit to a regular weekly, biweekly or monthly visit. Early evening or late afternoon are the best times, or around lunchtime. Call Eleni (919-448-5557) to set a date. Bring some fruit or just yourselves. One or two people at a time is best and short visits of an hour or two.

- we have enjoyed lovely dinners folks have brought over too, so please keep offering this if you would like to. I doesn’t have to be a meal either- if you have some veggies from your garden or the market, or some fresh eggs we can always make use of those. Tuesdays are clinic days and usually pretty long, so dinners on Tuesdays are always helpful.

It’s been a very hard time for all of us. We can’t thank our friends enough for making it that little bit easier.

Onwards,

Eleni jr.