the end.

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April 14, 2006

in loving memory.

rest in peace, jonathan kang. my prayers are with you and your family. there's something i want you all to read as well. this is a journal entry from jon's brother, jack.

My Brother Jon
Hi everybody. Before everybody who already knows what happens gets too freaked out, let me just tell you that this is Jack, Jon's brother. As most of you know, Jon passed away last Saturday, April 8, at about 7:25pm. Jon was so detailed in writing down his thoughts and updates about his medical conditions that my parents and I agreed that Jon would have wished for somebody to bring this journal to a close, and not leave out the last few updates. I actually managed to figure out / reset his LiveJournal password a couple of days ago, but I could not bear to actually write this article until today. Even then, I've spent the good part of the last two hours doing idle tasks to put off this duty of writing. (Actually I wrote half of this article Monday night, but could not continue and actually finished it today)

My literary skill is nowhere near as good as Jonathan's, so you will have to excuse me. It was one in many skills in which he was better than me at, only he never knew it. I know that he looked up to me and never thought that he was as good as me in things, but I hope he has figured out now that he was much, much better than me in lots of the important things. I'll try to maintain as much of his style as I can, and provide the great details of the hospital and medical tools and Jon did so well.

I think that Jon's final entry took us to last Saturday. He was taking the AVN-944 every day like a Swiss watch. Jon was so on top of things that he was completely aware of how to schedule his breakfast and dinners so that he could eat the medicine at the same times each day. He kept a chart of when he took the medication, and kept it neat and organized. Despite this, however, the drug was not having the desired effect: Jon's white count kept rising. I think that Jon has explained this before, but in a healthy person, a person's white blood count ranges from 8-13 thousand per mL or something like that. I am not sure exactly what the unit of measurement is, but 8-13 is the baseline value. During chemotherapy, Jon's counts would be at 0.1 for extended periods of time, making him very susceptible to infection. The week of Spring break, Jon's counts were in the mid 20s most of the week. Pretty high, but not high enough to really bother him. The battle between the leukemia and his body was going on.

On a side note, I want to thank all of his friends who came during Spring break. Jon was very fortunate to have all of these friends, and he was soooo happy during that week. As luck would have it, his counts would really take off just as spring break ended. Thursday of spring break it grew to 42.4, and Friday it grew to 55.8. By Sunday, it had shot up to 78.5, with 86.5 on Monday, 97.5 on Tuesday. It was around Monday that Jon really began feeling tired, and some pain on his side. The pain was due to an enlarged spleen (the spleen tries to process all the white blood cells). It was causing him pain whenever he moved around. The doctors started Jon on a pill called hydroxysomething that was a form of chemo, to also help the AVN-944. While he was still at home the entire week, my mom did notice that Jon was a lot more tired, and didn't have his usual energy as often as he did before. He was probably still IMing like crazy though I bet.

Thursday night Jon spent at home watching the Sharks game. His spleen was causing him a lot of pain, but it did not prevent him from cheering wildly as the Sharks beat the Kings by a score of 5-0. He was so excited to watch them play that for a couple of hours it didn't matter what his counts were, or how big his spleen was, or how close he was (37.8) to developing the dreaded 38 degree fever (which would mean he'd have to go to the hospital)--he was just a kid watching his favorite teams win and jump into a playoff spot.

Friday morning, Jon had his regularly schedule trip to the ITA in the morning. He rode in a car with my parents, and along the way began to feel quite tired, and experiencing the typical effects of the low blood pressure / fever. It had happened again. When he got to the ITA, they tried to treat him there, but his condition quickly worsened and they decided they could not do enough for him there. They wanted to send him to the ICU, but there were no beds available at the time, so he had to go to the ER for the time being. At the ER, he was put into a pediatric room (again, lack of beds), and he was there for most of the morning/afternoon getting poked and prodded and tested. The pediatric rooms are just like the regular rooms, except the beds were a couple of inches too short for Jon. It was also much more decorated than the regular rooms, and there was even an Apple computer that the patient or patient's family could use to surf the web!

A room opened up for Jon in the afternoon, and he was moved up to the E-2 Intensive Care Unit (ICU). Once there, he was kept on two different drugs to keep his blood pressure up. The blood pressure, like it always was, was the big concern. Jon also received a bag of platelets that I had donated earlier in the week, as well as all his standard antibiotic drugs. The doctors figured that this episode was caused by an infection, and not by the leukemia itself. However, the fact that his white blood counts were SO high made it that much more difficult for the limited resources in his body to fight off the infection. Things were not looking too good.

I had actually been to the hospital earlier in the morning, as my scheduled platelet donation for Jonathan coincided with his unexpected trip to the ER and ICU. I talked to him a little bit in the morning, but I don't think he was completely aware of what I was saying at the time. I also spoke with the doctors regarding Jon. In the evening, after work, I arrived for the 8pm visiting slot. The nurse actually let me stay through the evening until my parents came and visited Jon as well at about 10. Jon asked me how the treatment was going and what the doctors had said. I told him that it appeared as if the AVN-944 was not having the desired effect. At the same time, it was not doing him any harm, so he could continue to take it until the doctors all met and discussed his next treatment options. I asked him how he would feel if he had to do chemo again, and for the first time I could sense some hope disappearing from his eyes as he answered in his typical "I dont know" fashion.

As Friday night became Saturday morning, Jon improved. At about 5:30 am they were able to take him off of the blood pressure medication. For unknown reasons, Jon quickly got worse, developing a fever of 41 degrees (105.8), a very high heart rate of 180, and severe shortness of breath. Visiting hours are limited in the ICU, so the family was at home that night. (In the ICU, there is a single nurse that is there all the time with the patient). The nurse called the family at about 9:30 in the morning to tell us that we should go to the hospital asap. We all rushed there and arrived at about 10am. We probably arrived at the peak of Jon's condition, as he slowly got better after we arrived. His temperature began dropping very slowly, as did the heart rate. During this time, Jon was placed on an oxygen mask to help him breath.

There were two things that morning that stood out to me. Jon was very tired the entire day, and would only spend a few minutes awake followed by longer moments of sleep. Everybody could tell he was very tired. Right after we arrived, Jon managed to wake up, and the first thing he asked me was "What time do the sharks play again?!?" I told him it would be Sunday at 5, against the Dallas Stars. I never thought that we wouldn't be able to watch that game together.

The other thing that stood out was when he asked the nurse for his medication. Actually, asked is putting it too nicely. He quickly awoke out of his nap, and excitedly questioned the nurse as to where his medicine was. "Where's my medicine? I need to take my medicine now!" Like I said before, he was on top of his schedule like nobody else. The nurse assured him that one of the other nurses was bringing the pill soon, and he calmed back down. His pills are usually kept in the refrigerator, so they're somewhat cold when he takes them. This time, however, the nurse had taken the pills out before she started filling out all these forms for the medicine, so that 20 minutes had probably passed before Jon actually took it. When he did, the first thing he said was "HEY! THIS IS SUPPOSED TO BE COLD!" Jon was a fighter to the end...oh how much he wished to live and fight and defeat this illness.

Jon had not eaten anything for over two days now when he asked mom to get him an ice cream sandwich. I was surprised when he was able to finish eating it all. It was one of those Nestle kinds that come in the yellow packaging, with two cookies and vanilla ice cream in the middle. He was so cute when he was eating it--I had to place a napkin on his chest to catch the pieces that fell down.

By the afternoon Jon's temperature and heart rate had returned back to normal. The only concern was his breathing--it was very labored. He would often grab at his oxygen mask to hold it tighter in an effort to get more oxygen. The nurses compared it to running up a large hill. Your body is tired and is trying to get more oxygen. You could see the struggle in his chest with each breath that he took. The family and Jon had decided earlier that he did not with for a breathing tube to be put down his throat. The reason for the tube is to help people breathe artificially.

Typically, a tube is put down the throat to buy the doctors more time. In some cases, the person recovers well enough to be able to breath again without the tube. In other cases, the person does not, and the family has to make a very hard to decision as to when to remove the tube. Either way, while the tube is in, the patient cannot speak, and often times cannot communicate to the family either. The doctors had told us the decision was up to us, but that they were not going to have a treatment option for the underlying condition of the leukemia, so it would only prolong his suffering, in addition to the grief that would accompany any decision to take the tube out.

Saturday afternoon, Jon would have received the breathing tube had we not decided as a family to not put it in. His breathing deteriorated and he began coughing up some blood. At first it was just a slight cough and some blood, but it got worse as it went on. His lack of platelets probably contributed greatly to his body's inability to stop the bleeding. As fate would have it, some of Jonathan's favorite nurses from F ground had come to visit him. Two of them arrived earlier throughout the day, but 5 others showed up immediately after their shift had ended at 7pm. All of his old nurses, mom, dad, and I were with him every step of the way.

He kept coughing, and in between his hyperventilated breaths, he asked "why can't I calm down!?" The nurses gave him morphine and another medication to try to relax him. His breathing slowed down as the family continued to hold him and tell him how much we loved him, how proud we were of him, and how it was okay if he wanted to go. He could no longer talk, but was able to nod and respond to what we were saying.

Surrounded by love, his family, and his favorite nurses, Jon passed away at 7:30pm, April 8, 2006.

Memorial Services will be held on April 17, 2006, at the Alameda Funeral Home (12341 S. Saratoga-Sunnyvale Rd, Saratoga CA) at 10AM. Visitation will be held on Sunday the 16th, from 1pm to 5pm.

Jon, I love you, and I miss you, and I'll keep you in my thoughts forever.

Posted by Jeff at April 14, 2006 08:36 AM

Comments

Posted by: Oma_Travis at April 14, 2006 08:02 PM

Posted by: jcc at April 18, 2006 09:14 AM

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