Good boy Jonathan

We miss you.

Good Bye Jonathan!

I heard a sad news of his passing.

He is no longer with us. I remember surprised earlier this year seeing him again; a robust and active child. I stopped myself from thinking about his continual battle against the spread of cancer. I stole many glimpses of him at the family gathering and was amazed by him. If I were him, can I be that brave? It is humbling. He continued with the regimentation of surgeries and treatments. I think about all these children battling cancers.

He was a brave little boy who had pre-natal cancer. From my researches, his condition was not well understood but on the increasing trend. I read about pre-natal surgery to remove cancer of a fetus.

I am looking back and think that it is amazing he lived this long and with enormous energy. I will remember him, an amazing and brave boy. I am so amazed and moved by his life.

Sleepy bear

Bay Owl

Piper from Coney Island

Jamaica Bay turtle

Good wishes from Colorado

Hi Jonathan,

You are the bravest little boy we know. And we know you are strong enough to beat cancer. We can't wait until you get better so you can come out to visit us soon. Then we can go hiking and fishing and camping and swimming and climbing and hot air ballooning and all those other things you want to do.

Tell your mommy and daddy to keep hanging in there. And remember not to fight with your brother and sister so much.

We love you much,
Uncle Wes and Auntie Sook Hee

Bread Picture 1

Hi Jonathan

This is bread before baking. Fluffy and soft.

Good News

Hi Everyone,

The surgery to Jonathan's right lung went well. The doctor took out the 2 cancer nodules and the pathologist is determining if the cancer cells are alive or dead. I feel like Jonathan has gone through so much that my goodness, it's about time he gets a break. The cancer really has to be dead and scar tissue in his lungs. His oncology doctor has already told me that she really does not want to radiate his lungs because if they do the heart is in the way and they cannot avoid radiating his heart if they do the lungs. The combination of his chemo meds that he has taken and the radiation will most likely give him chronic heart problems going forward.

The recovery for Jonathan's lung operation is much more painful than the whipple procedure that he had 3 weeks ago. The reason for this is due to the position of his incisions. While I know that this is not funny, those of you who know Jonathan will understand why it made me smile and kind of laugh inside. Once Jonathan was moved to the recovery room he was in a lot of pain. He kept yelling that the pain was a 10 and that he was having a "heart attack". It is soooo Jonathan to surprise me with what he says. I didn't even know that he knew the word heart attack.

The nurses on the 4th floor all think that he is a genius. The other night a nurse named Rochelle came into the room and said, "Who's your friend there"? My girlfriend had bought him a stuffed puppy dog that day. Jonathan looked over to the nurse and said, "It's just a stuffed animal." The nurse said she almost peed in her pants when he said that.

Anyway, my son Jonathan still amazes me with his strength and wit. There's a lot to learn from little children!

Take care and hope to see everyone soon.

Lisa

Chalu thanks all.

Thank you for all your help. I hope Jonathan is coming around now...

We will have updates soon....


I owe you all big time...

Monday October 15 Update

Good Morning,

I just wanted to give you an update on Jonathan. He is doing well from his surgery from September 26th. He is eating a little bit and his stomache seems to be slowly working. We were hoping to get out of the hospital this week, but the doctors told me that they are going to operate on his lungs tomorrow to take out the cancer nodules.

The operation is set for tomorrow morning. Jonathan will be very upset that we are not going home, as I.

Please keep him in your thoughts.

I have very limited access to e-mail as the computer in the room is having some problems. I am using a computer in the hallway, but it does get used frequently so it's hard to get on it all the time other than wee-hours in the night or morning.

Hope to see everyone soon!

Lisa

Monica Leung

Hi Jonathan!

Stay strong and get well soon! =)

I finished the Mayor's Cup kayak race.

Hi Jonathan and Lisa

I did not think I could finish. My boat was not working correctly and it wanted to go to the right every time I paddled. Many times I wanted to quit, at least three times.

Because of my friends, I was able to finish the race. Muriel and I were laughing on the way home. I owned none of gears I used. I borrowed your courage. I borrowed a great wing paddle and waterproof radio from Philippe Castagner. He is sick with the throat infection. I hope he gets well and sings for us. I borrowed the light boat from Joe Glickman. I borrowed the car we used from Keryn Lowry, a great nanny pro. I thank Raymond Fusco, the US Coast Guard and all those racers. I especially thank Cathy Hough of Massartre being understanding and supportive.

The night before the race, I decided to do my Jedi trick; make bread. I learned to make yeast bread that takes two stages. The first stage takes 14 hours for the yeast to change flour into more nutritious and protein dough. Yeast is what makes kimchi, bread, and delicious things. Why is this my Jedi trick? When I am mindful of rising dough, it frees me of my own anxiety. My troubles are in this case the kayak race. If I finish, I make bread. If I don't finish, I still make bread. Life goes on.

So, I made 30% wheat yeast dough and started the night before. Today, I folded it and let it rise another 4 hours and then bake for 1 1/2 hours. My home fills with the most delicious smell; baking bread. One day, we will make bread together.

Back to the race, it started as soon as I launched my boat. I paddle on the sea and this is different because it is partly a river; the great Hudson. My friend, Joe gave me lots of good advises. Just out of the gate, a big wave smacked me and I almost went over. I was ready to brace and scull out if I have to. I could hear racers oohing.

Right from the start, the boat wanted to go right and I would adjust it tapping wire. The wire controls rudder like fish fin. It helps you to right or left. After the race, I checked the rudder and the right wire was stuck. I think there may be rust or dirt letting it slide easily. The boat is designed so you can't get into the tail section.

I had difficult time paddling to the George Washington Bridge. Also, my forward strokes were off, perhaps because of the boat. It took me a long time to reach the bridge. I did see the forward group of the fast kayakers. They drove like a pack train whooshing by. They made a video, I am not the part of the pack but the first lone kayaker on their right in this video.

See the video

You could see my paddling is small not large like these other kayakers. That means trouble because I don't have enough power. But the water was flowing with me fast and I did not realize it.

After the Spuyten rotary bridge, the water went flat. Not even half way, I realized I was not going to make it. I worked with wire and the rudder. I had to grasp my paddle so that I can balance the boat going right. It took me awhile to reach half way point.

I almost quit then. I stopped at Peter J Sharp Boathouse and excused myself to restroom. I ate a few nutrient bars and taped the rudder so that I paddle without it. I set a new goal. If I can make it to Hell Gate, I can quit. I don't expect any miracle.

There are 10 bridges between the boathouse to Hell Gate. I paddled a bit and the boat being so light, without rudder, it was just going every direction. By now, I was one of the last paddlers and the Coast Guard stayed right behind me. They stayed all throughout to finish and saw how hard I struggled. I had to un-tape my rudder because I was not going straight. After awhile, I spotted a small rock on the side. I got close to it and got off. It must have been 5 feet by 2.5 feet. I used it to free rudder. I got back in and started again. The Coast Guard asked me some questions which I deflected and asked for "1 second". They were patient.

It took forever to pass 10 bridges. I resigned having to keep tapping left wire to correct boat course. I did remember Joe's comment about bumps. I learned how to use bumps to go fast. The water was already changing. I reached the 155th street, then the 110th and I was getting close to Hell Gate. Anything beyond Hell Gate is bonus and living on borrowed time. My muscles were clamping especially index fingers for I grabbed paddle hard. As I took rest between strokes, I noticed people on these bridges. Some were looking at me with curiosity. Suddenly, I became an accidental tourist on the water looking at people on land.

I said to myself at this point. I am not going to make it. I am not going to win anything. I have already impressed myself. I might as well take time and enjoy myself failing. Every bridge I passed, I kept saying BONUS.

I did reach Hell Gate. Different from the other day when I looked it from the walk, it was menacing. Water was boiling and chops were big. They were not particularly threatening. Just go with flow which I did. I slapped water with my paddle to find balancing moments with bracing. The water now was moving with me not against me like before. The Coast Guard helped to check a motor boat making wakes next to me.

I was exhausted. I thought I will quit at the South Sea Port. With the boat problem, it was a miracle I came this far. I kept looking for visual cues of fast flowing ripples. I zig zag. I remembered a comment about the UN building and I used fast flowing current near the embankment. It was fast and I did not paddle but floated resting and stretching drinking water before my muscles start clamping Once muscles start clamping, it gets worse and an accident will happen. I don't know what kind of accident. But with like 5 knots fast flowing water and an exhausted paddler, anything can happen.

Water expands and contracts through turns. Large bodies of water were mixing. Some parts of the river go up and some go down. I want to be on the way down.

I see the Williamburg Bridge I used to live by. It is nothing like the bridge I know. It has transformed itself and looks massive and metallic. A bridge acts like a wing and shears winds downward and upward. This creates turbulences around the bridge.

I am already full of bonuses. The bridges are so beautiful. Passing the Manhattan bridge which I bicycle over and the Brooklyn bridge which was built by the father and son who graduated from my school, I thought about you. I became emotional. Fighting overwhelming feelings, I passed the South Sea port. I don't know but I got little courage and thought I may be able to finish the race.

I paddled on around the Staten Island ferry terminal carefully for these ships are huge and towering. As soon as I rounded the end of the Manhattan Island, the wind and waves picked up high and strong.

I kept going nervously. Waves were big and choppy. At few spots I noticed I was too close to the wall . I started out into the wave. Again I thought about people helping me along the way when I was just a beginning kayaker this year in May.

Then back into the Hudson river, I could see the marina. No problem I said. I was wrong. I sighted the marina I thought finishing line but it was further. In addition, the tide was going against; fast and furious.

At one point, I was paddling and look at the wall of the Battery Park promenade. After some minute or two, I looked. I was at the same spot. I was paddling hard and I did not make an inch of progress.

Wow, this is a breaking point. My hope and fate are in balance. Then water pushed me to right. The broken rudder did not matter any more at this point. Again it pulled to the right and got jammed permanently.

I ended in this little alcove with water churning around me like a whirlpool. The Coast Guard was getting really nervous because the tiny marina was tight and current was hard.

I spent some minutes orienting my boat and see how it reacts to my paddling. I adjusted paddle position so one side is longer. Washing machine waves and I hula dance. Then I went back into the current diagonally. I figured I can't go forward but will diagonally. My gamble worked. I am still a long way since water was moving fast. I had quarter of a mile but at 7 knots, it is like going a mile and half. It felt like that.

Then I felt. I fall here or in the middle of the river. I fall. What difference does it make? I reckoned. So, I took myself way out away and away from the wall and current . As I did that, waves were bigger but not faster. More hula dancing. I threw a quick glance at the wall. Around the wall of the Battery Park walk, the water looked like jet stream.

I was tired. Then, I said "back to the basics" and focused on using legs and torso. I focused on forward strokes. I gave up finishing the race. I gave it up for singular focus on forward stokes. I still had to go diagonally or zig zag.

As I got closer to the marina, I heard cheers. I blocked it out of my mind and keep paddling; leg first, dip paddle full, start rotation, think exit of blade around an axis, and keep that silent space between you and paddle.

A thought entered my mind. Relax. So I listened. I slapped the water with my paddle; check check. I start forward stroke. I don't know but menacing waves become bit friendlier. More relaxed hula dancing. It took forever to line myself along the marina since I could not go straight due to fast flow river.

Waves got even choppier as I got close. I saw a catamalan parallel to the marina working hard motoring up. I went up to it so it blocks waves and break water surface evenly so I can gain precious inches. I kept eye level with the catamalan and cheering crowd. Nervous catamalan man asked where I am going. I answered "to the party" and then took the cue and veered off surfing two large waves into the mouth of the marina. The band was playing.

A small commotion was ready to receive me. The Coast Guard radioed to check me after the Herculean effort; slow paddling indicates problems; hypothermia or heat exhaustion. My heart was in aerobic range of 165 and 142 per minute.

My father and Muriel were there. He was hoarse from encouraging everyone for the last three hours. He enjoyed himself so much.

Still here in my comfortable kitchen thinking just yesterday, I went through a whirlpool of emotions. This is what I remember; people and especially you, Jonathan. Thinking of you gave me hearty boost.

Hang in there. We can make some bread and swim in the lake soon and have fun. Sometimes, in a race like yesterday, I see my whole life flashing by. Longer the flashing, the better I think.

I include my yeast bread in making here shortly.

Bill Wenrich

Hang in there Jonathan. You're` in the thoughts and prayers of many.

Stay strong, Bill

Erik Borgnes

Jonathon,

The video below is my son Finn. He is 5 years old. When you get
better, maybe you can go out and kayak, too.

http://www.youtube.com/watch?v=ZAEQMP7zVvs

Wishing you well,

Erik

Update

Hi Chalu Obba and Ray,

I am sorry but Jonathan and I will not be able to make it to the race tomorrow. We are both stuck at Children's Hospital of Philadelphia. We have been here since September 26 after they operated to remove his tumor (whipple operation). We will not be leaving until his stomach works properly to be able to digest meals and keep it down.

He is in good spirits though. Jonathan would have loved to have been there tomorrow, but keep him in mind and hopefully when we get out we will be able to meet everyone then.

Good luck!

Lisa

Uncle Chalu's Race

Hi Jonathan

About the race, I have told everyone at the race about you. It is happening tomorrow from the Battery Park in New York City. So everyone knows about you. There are some Olympic champions like the Hungarian "The White Hun" Zsolt and Joe Glee-ckman whose funny mugshot he sent. I am sure they love to meet you for you are a happy boy. Here is the course on Google Map.

The race goes around the island of Manhattan. Most people don't know they live on an island with amazing body of water. The island straddles between the great river, the Hudson, the Long Island sound and the Atlantic.

Because it is located between them, water moves in strong motions. The race is 30 plus miles. The top racers like Joe and Zsolt will finish in 3 hours and 20 minutes. A newbie like me, who knows?

After my knee injuries, I started kayaking as recovery. It turned out to be a gift. I learned about the ocean especially little place called Jamaica Bay; shallow bay where small young fish come and horseshoe crab spawn. I would like to take you one of these days.

I spent good few months learning and want to try longer paddle. This is a big test for me and my skills.

The difficulties of the race are; long distance, strong currents, terrain and vehicles. I can't stop and eat. So, I need to drink something like Gatorade and lots of it. Paddling constantly makes me hungry like you have a hole in your stomach. You sweat a lot too. If I don't eat, I will run out of energy.

Currents can help you or fight you. Even champs like Joe are respectful and afraid. They can lose and waste precious energy. So, we study currents. Currents change with the Moon. It can go from low tide to the high tide in matters of hours.

Terrain around the island is challenging. To make the island, many engineers built many things like bridges and tunnels and channels. Long time ago, people did not have cars. They used boats. To connect and tame rivers and water around the island, engineers dug and blasted channels. One of the challenges is called Hell Gate.

The name "Hell Gate" is a corruption of the Dutch phrase Hellegat, which could mean either "hell's gate" or "bright gate/passage", which was originally applied to the entirety of the East River.

Dutch is people from Holland. They discovered the New York (aka Manhattan Island) and sold it to us.

Vehicles are boats of all sizes; power boat, cigar boat, barges, sail boat. They make big waves as they drive by and waves could knock me and capsize me.

So, I need everything I learned in school taught by coaches of Sebago Canoe Club. I practiced on a lake north of New Jersey; Lake Sebago near a town called Sloatsburg. Next summer, we can all go and swim and kayak in this lake.

What I really need is; courage and confidence; mind over matter. It is going to be cold, wet, tiring, scary, painful, confusing, frightening. Sometimes, like that all at the same time. I feel confident to survive and difficulties don't scare me. I am scared of myself not believing in myself. So, I like to reward myself; pat on my shoulder like "You are doing great. Keep going."

I need to go through it like passing through an open window. Keep going believing in myself. I don't know how long it will take me. I do like open ended challenges because I will feel and learn something valuable about myself and the world.

Jonathan, I will be thinking of you and your courage during the race. Hopefully, I will make it through. Think of me and my race.

If Jonathan is not tired by now,

About little boats we paddle, New York Mayor's Race. The race involves human-powered boats; single kayak, double kayak and outrigger.

Kayak means hunting in Inuit language. It is actually Qajaq. Inuit and Greenland people live by hunting since there is no growing season. If you can't hunt, you can't live. They eat delicious raw meat, seal and whale meat a lot like sushi.



His qajaq is made of seal skin sewn together and cured by peeing as a way of preservative. Paddle is called Greendland paddle and the Olympic paddle comes from it. The stick next to is a harpoon with the walrus spear tip. When you harpoon a whale or seal, it will drag you so fast and so hard. You could be pulled into the water.

The water is so cold that you can't stay longer than minutes. The cloth he is wearing is called tuiliq, a form of anorak fitted so water does not come in. But you tip over and capsize, you need to roll back up.

Jonathan, I must have Inuit genes because I learned to roll so easily on both sides and different styles. If I were an Inuit, I could be on the water. I don't know yet if I can hunt a whale. I think that would be hard.

Kayak design evolved some 5,000 years. In modern times, it rapidly evolved in boats designed with newest materials; carbon fiber, new paddle design, shapes and sizes.

Outrigger is another boat but comes from the Pacifics. There are many deep traditional communities around outrigger racing. It is not a race but gathering of tribes.

A six-person outrigger canoe

Pancreatoblastoma

It sounds like a rare form of infantile cancer.

Pancreatoblastoma or infantile adenocarcinoma is an unusual non-functional tumor of the pancreas; it is generally encapsulated, presents organoid pattern containing globular structures with elongate cells (squamoid corpuscles) and acinar or ductal cells or both⁴. It contains both epithelial and mesenchymal elements²⁰. Horie has subclassified them into two groups: ventral type, occurring in the head, and dorsal type occurring in body and tail with relatively immature histology and poor prognosis⁷.

Pancreatoblastoma is a curable tumor. Examination of serum AFP levels may be useful for diagnosis and to follow the course of the disease. Complete resection is the treatment of choice. However, tumor is often unresectable at diagnosis and preoperative chemotherapy is needed to reduce tumor volume. We suggest a regimen that include cisplatin and doxorubicin. In patients with incompletely resected disease, postoperative radiation may be indicated.

We are looking at class V cancer and there are only four classes. From what we gather is this is a difficult case.

From further reading, this cancer seems to be occur in children even as fetus.

Erik

Hi Jonathon,

My name is Erik and I am a doctor in Wisconsin. I have seen many
boys and girls in the hospital and they don't like being there,
either. Keep smiling, try to be happy, and you will get to leave one
day soon. I hope that you can get outside to play before it gets too
cold. I will be paddling my boat on the river this weekend. Maybe
one day when you are feeling better, you can try a kayak, too.

Wishing you well,

Erik

Sound card from Beverly Gillia

Click on this sound card.

Regina Thomas

Jonathan your names means "God has given; gift of God" regardless of the religion. You are special because you are gift. I will keep you in my prayers and know that you are a leader and many will follow. To the family, stay strong in mind and heart because it looks like in the pictures, Jonathan has a positive attitude - follow his lead.

Be Blessed! - thank you for sharing

Regina Thomas

Lisa - Jonathan's Mother

Hi Chalu Obba,

First, I just wanted to say "Thank You" for taking the time to make the website for Jonathan. He is taking a nap right now, but as soon as he wakes up I plan on showing him all the messages that he's already received.

Jonathan is 5 years old and was born on May 21, 2002 the year of the white stallion. He is definitely a very smart special boy who has a laugh that is soooo contagious that nurses and doctors have said that we should bottle it and sell it. He is the 2nd of my three children. His brother Justin is 6 1/ years old and his younger sister Jena is 3 years old. Jonathan loves Thomas the Train, Bugs, and Insects. He wants to be a bug doctor when he gets big.

Jonathan was diagnosed with Stage 4, Pancreatoblastoma, a very rare type of pancreatic cancer in March, 2007. The cancer is so rare that there are only 200 cases reported and there is no protocol or roadmap like other cancers. Children's Hospital of Philadelphia which is the #1 pediatric cancer center for children sees about 700 pediatric cancer patients per year. Of this 700 they will only see 1 Pancreatoblastoma patient about every 2 years.

His tumor which started in the pancreas spread into a tumor in his abdomen. The tumor encased all his major blood vessels that connected the liver, stomache, pancreas, and gall bladder. The doctors could not remove his tumor in the beginning because of the danger in position. Jonathan has received 6 months of chemotherapy and the tumor shrunk enough so that they were able to resect the tumor. On September 26, 2007 surgery was performed and the tumor was resected. However, after the pathologists reviewed the tumor, they do not believe that they were able to get all the cancer cells in his abdomen area. To make things worse, Jonathan also has cancer in his lungs.

Currently he is going to be starting radiation at The University of Pennsylvania Hospital. The radiation will be done on a daily basis for a period of 5 weeks. The doctors have not yet decided what they are going to do about the cancer in his lungs.

I do also have another idea that I have been working on and if it does go through, I was wondering if you could help me with another website. I am trying to raise money to find a cure for pediatric cancer. I'm thinking about calling it Bill of Hope.....Even if Jonathan's cancer is cured, Pancreatoblastoma has a very high recurrence rate. There was a trial done and the average expectancy of a Pancreatoblastoma patient is somewhere between 2-5 years. Therefore, even if Jonathan does beat this cancer, I am running against time to find a cure before another recurrence may occur. Would you be able to maybe help me with this website?

Thank you.

Lisa

PS. Sorry folks. I thought he was younger. You know that Asian thing. They look younger. He fooled me. Obba means old brother. We are all related. Are we not related?

I lost a cousin to leukemia. My parents' generation did not have cancer just high blood pressure. My grand father is 97 years old on my mother's side. When Chul Kyung passed away, it was a private matter. I think differently this time. All the best - Chalu the webmaster.

Lyndsay Miller

Jonathan,

Just wanted to drop in quickly and let you know that I was thinking of you. I heard your story from a co-worker and wanted to send my best wishes.

Get well soon!!

-Lyndsay Miller

Renee

Hi Jonathon,

I am thinking about you and rootin’ for ya! Get well soon! You are in my thoughts and prayers...you WILL pull through this! J

Sincerely,

Renee

J5

The world needs fighters like you!

All my best,

J5

Mark Ceconi

Dear Jonathan,

As a dad, as a kayak racer, as a friend of many who have battled cancer, I'm sending you warm thoughts and energy. You should know that everyone is very proud of you, so very brave for such a young boy. As we race on Sunday, I will be thinking of you.

Many warm smiles your way,

Mark Ceconi

Dorit and Cheche

Shalom Johnathan,

My name is Dorit and I am Chalu's friend (wow almost know him more than 14 years). I have a funny dog his name is Che and he is 8 years old. He is a labrador, really beautiful, happy. smart and funny one. Che and me want to wish you good health, and hope you will feel better soon. We invite you to come and visit Che and play with him. Meanwhile I attach few photos of him.

Shalom,

Dorit and Cheche

Jeremy

Get well my friend and come surfing soon!

www.eastendsurf.com

aloha

jeremy

Justin Michel

Jonathan,

I am humbled by your courage at this time in your life. Keep positive. Stay strong. Eat your green beans.

Get well!

Sincerely,

Justin Michel

Joe Glickman

Jonathan,

paddling around manhattan is a great journey and you will be in our minds and hearts as inspiration. thank you for that brave little man.

joe