Medical Updates Jul '10 - Dec '10

KEEP THE FAITH!

12-20-10 Recieved a call this morning from Kim who was quite excited about his dreams last night. All night long he dreamt that he was running. He was not running away, but running freely. He would wake up in the middle of the run, fall back asleep and begin running again. It was so real he could taste it.
His interpretation was accurate. He told me that he thought it was because we were finally beating this thing and it was coming to an end. That he will be free soon and able to enjoy life as it was before.
Dreaming of running has many interpretations. His description would lend itself to be a good sign. He was running, because that was one of his life's joys. It was an enjoyable event, not a struggle or panic. The interpretation here would be that he is on the right path or road.
This dream might be his conscience confirming that the bone marrow transplant is the right course of action. That he needs to follow this plan and he will come to the finish line on the other end a better man. After running his many marathons, each time Kim would say how exhausted he was, but full of life and energy. He would be sore for a short period, but would reap the benefits for the rest of his life with the memories that he would gather along the way.
Just as all of the marathoners have complete strangers cheering roadside from start to finish, so will Kim. He will have loved ones, acquaintances and strangers rooting for him from near and afar.

12-17-10 Kim had an awesome day with Dr. Joyce & Dr. Jamil. They administered Retuxin therapy and gave him a little pill to knock him out and tapped his hip. All he remembers is that it hurt, which is a good thing. Healthy marrow hurts when being extracted. The appointment was to review his CT Scan, his status and the next steps. They have reduced Kim from 4mg of steroids twice a day (day/night) down to 2mg every other day in the morning. The CT showed no signs of cancer. The marrow test will take it a step further and reconfirm this result. The big topic was the bone marrow transplant; when, where and what it will entail.
All cancers have names and thankfully all cancers have specialists, at least if you live in Boston (we really do not appreciate how lucky we are to live here!) Dr. Joyce explained that just as they referred Kim to New England Medical Center's Dr. Wu for the operation to remove the brain tumor, they were most likely going to send him to the best place to have the marrow transplant procedure at Mass General Hospital. The next topic was a shock to Kim and a little more of a reality. They discussed timeframes with him. He will be in quarantine for 30 days (+), once deemed healthy enough he can then be discharged into general population where for the next 100 (+) days he will have to wear a mask and latex gloves at all times. This is at best case scenario over one-third of a calendar year! This will take a tremendous amount of patience and virtue to keep within these restrictions. He will need encouragement from all of you not to stray from these orders. We all know Kim. He is a hugger and a kisser. He thrives off of touch and socialization. He promised me he was ready and going to do what needed to be done.
The neck and spine tap will not be administered for two weeks., then the marrow transplant will follow. This will place him beyond the Christmas and New Year's holidays and move him right into his one year anniversary of being diagnosed.

12-14-10 Dr. Joyce & Dr. Jamil have moved the tapping date to either Friday or Monday, so Kim is good for a few days.

12-12-10 We are not sure what today will bring for Kim. He was not sure how they were going to proceed. He had his CT Scan on Friday and the results were coming in today. Which could mean today will either be a day of just getting test results or he will undergo the neck and spine taps. We need to pray that he does not have the leakage that he had back on February 6th.

12-10-10 Kim met with Dr. Joyce & Dr. Jamil to discuss his future treatments. It was decided that on Monday he will undergo not only a spinal tap, but also a neck tap. They are moving forward with the bone marrow transplant full speed. The first choice is to utilized Kim's own marrow as it will be recieved the best by his body. That is why they are tapping him on Monday to make sure his marrow is 100% clean. No dates have been set and the parameters are still open as to when, how long he will be in the hospital, etc. It was discussed early on that if a bone marrow transplant was necessary that he would be in quarantine for 30 days. This is due to the process of bringing his immunity down to zero, inserting the new healthy marrow (hopefully his own) back into his bones and letting it slowly buildup and regain his full immunity. Once I have all of the rules and restrictions they will be posted.
For now, Kim is moving through life enjoying every minute. He is still feeling the tiredness side effect from the radiation treatments, but is thankful for the option and embracing the next steps.

11-30-10 As we close out the month of November and enter the final month of the year, Kim is closing in on his final steps of this phase of his life. His radiation therapy treatment will be determined by what is exposed on the next MRI, which has yet to be scheduled. He has one more treatment tomorrow and will be done at least for the week. He is feeling the affects of the radiation in the form of exhaustion. It is a similar feeling as to when you are at the beach all day in the full sun, without the benefit of sunblock, the ocean, the sandy beaches or bikinis. Instead he is in the basement of BIDM under a machine. But, while he is undergoing his treatment, his mind is wandering off to the not too distant future where all of those things will be a reality.
Slowly, but surely he is chipping away at getting rid of his parasite. He has fed it poison (chemotherapy), surgically removed it and now is radiating it. Through all of this he has remained positive, upbeat and handsome as ever. Let's see what December brings us. I know what I am wishing for Christmas. How about you?

11-29-10 Kim had his first radiation treatment today. They gave him a  little something to relax and he wandered off into a peaceful place during the 90 minute procedure. He told me he envisioned eating jelly donuts. Oh, how times have changed.
He is schedule to go in again tomorrow for his second treatment and the last on Wednesday for this cycle. Another MRI is waiting in the wings and we will see if there is any development.

11-25-10 What a wonderful Thanksgiving Day it turned out to be for all of us as we got to spend the holiday as it was meant to be sharing food, fun and laughter with friends and family. Mariposa and George cooked up a storm of food, Kim roasted a turkey, Hugh smoked a turkey and there were insane amounts of food accessories spread throughout the kitchen, dining and living rooms.
It was a come when you are ready, leave when you must event. It was great to see Kim enjoy himself so comfortably with friends outside of a hospital setting or studio.
Tomorrow he will start ramping up the steroids again, as the rescheduling of the radiation has the new start date on Monday. The steroids will reduce the amount of swelling in his brain from treatment. He had his face mask fitted last Monday and strangely enjoyed the process. The mask will protect sensitive areas that do not require treatment.
We also had the privilege of celebrating young Marco's birthday, so once again, Happy Birthday Marco!


11-23-10 Today's appointment consisted of another MRI and the fitting of Kim's mask, which will block the radiation from his handsome face. It was a long day and the decision came down to hold off until after the holiday week to begin the treatment. His first treatment will be Monday, November 29th.

11-22-10 The next phase of Kim's therapy begins today with his first radiation treatment scheduled for 9AM. He will learn his new schedule and what will be his routine for the upcoming weeks/months. Let's hope his treatment is completed by Christmas or the New Year and say goodbye to a 2010 that cannot end soon enough.

11-20-10 Strange week for Kim as the withdrawal process from the anti-seizure and steroids began causing his body to fight back. His muscles were incredibly sore. Much greater than after running a marathon. His mood swings have become more apparent, but understandable. His focus has become more and more on the now and today. Once his mind is set, then it is next to impossible to get him to alter his course.

11-15-10 Kim had his staples removed today. I am still unsure how that whole procedure goes down, but the thought of it gives me the chills. The incision has healed nicely and he now can continue with his war stories of how he saved a young surfer from a great white shark and during the struggle the shark had his head in his mouth, but don't worry...all were saved...including the shark after a Kennedy beat-down.
Back to reality, Kim starts his radiation therapy on Monday, November 22nd at Beth Israel Deaconess Medical hospital as an outpatient. We have not gone over the plan as of yet, but will update you as soon as it is explained to me.

11-12-10 Last couple of days Kim has been fighting off a cold. He's not sure if reality has finally started to catch up with him or if it was just the cold, but he has been wiped out and resting. I am still unsure as to what the gasping of air is when he speaks, but I remember the chemotherapy used to do that to him when he was on high doses. His mood is great and his spirits are high.
He received a call from "Cyberknife" the radiation department over at Beth Israel Deaconess Medical to setup a consultation for planning out his new course of action with the targeted radiation. As usual, he is excited to begin his treatment, so he can end it and begin life without constant treatment and resume working on a daily basis. 
Kim is just looking to wake up and look at his day without worrying about what hospital he has to get a ride to for an appointment that either involves some form of treatment or a plan to save his life.

11-10-10 Another early morning call from Kim today. The steroids are keeping him from sleeping although even with sleep deprivation he is still in a cheery mood looking forward to the girls waking up. Now he sits with his computer and coffee trying to put finishing touches on photos. Misha will get up soon and peek in on him and shortly after they will be walking to school. It's a beautiful way to start the day.
Tomorrow will be the first day that the ween down process from the steroids will begin. The last attempt did not go as planned, but looking back we understand why with the tumor still growing and pressing on his brain. Now that it is removed, we are hoping and praying that there is not residual side effects caused by the pressure. They will slowly bring him down to zero. This will help with his bloating, ability to sleep and his ferocious appetite. For the meantime the Keppra, anti-seizure medicine, will still be administered daily as a precaution. As a casual observer, I would place a bet that Kim is more fearful of the seizures than the tumor. The seizure took control of his body, which is easy to type or to read, but to watch your own body move unwillingly in such a violent manner must be shocking. The tumor on the other hand was the "cause" of the "effect". The doctors had just beaten the cancer and he has all the faith in the world in them. He just wasn't sure about the seizures. Especially since they returned. I am sure he will have this at the front of his mind all day. Subtly he will glance down at his left hand and watch it unintentionally. 
Today will be a great day.

11-09-10 After all of his excitement from the incredible news and success of his surgery Kim finally figured out he was exhausted. He slept through the night and had a day of rest. A day of rest in the life of Kim Kennedy, that is.
The staples will be removed Monday, November 15th and he has his follow appointment with Dr. Wu on Friday, November 19th. The radiation sessions are being discussed behind the scenes and as information is released it will be posted.

11-08-10 Home Sweet Home - Kim was dismissed this afternoon from Tufts. Prior to his departure he had a post-op MRI, which showed no signs of any tumors. We all talked about theories and were imagining the road ahead. Kim will certainly always be thinking of these times and wondering what is in store for him. We kind of chuckled and relished in the fact that he will be looking back from the future, which is a good thing.
Next on the list is targeted radiation around the removed tumor site. He will recieve his treatment at BIDM and is waiting to hear from Dr. Joyce as to when the radiation therapy will begin. For now, he will enjoy the time away from the hospital with his family.

11-07-10 1:00PM Paul, Chris, Amanda and I got together with Kim and watched the Patriots game from his room. The game was on, but the conversation in the room took precedence and priority. Again, the leaps and bounds he has taken with the swelling cannot be overstated or exaggerated. He looks so good. He is down to a slender 185 lbs from 199.8 lbs, which is midway to his normal weight. He keeps repeating that he feels as though the he is in the beginning stages of the end of this part of his life. The weight of the tumor being removed (this is where he will reach towards the scar on his head, make a suction sound and shoot the tumor into an imaginary trash basket) has really given him new life. It has re-energized his fight and spark in his eyes.
Amanda took him for three laps around the floor before leaving. She needed to stay for a few more minutes  to catch her breath after trying to keep up with Speedy Gonzales.
Shortly Marina found her way through the maze of Tufts Medical to Kim's new room. This place is quite confusing and it seems like the more you visit, the more they move him around and the more confusing it gets. Within a few minutes Karen dropped in and we all started chatting maybe a little too loud as we were asked to move to another room. They moved him to the end of the hallway into room #568. It's a better room. Not really bigger, but there is no curtain divider to the common bathroom, which is kind of strange in the first place. As we entered Karen pointed out that he had a wet bar. I knew we forgot something for the game. Sorry Pats.
As you can tell, the report is light in nature. He is doing amazing. He finally has his Crackberry in hand, which didn't stop ringing with texts, emails and calls. He barely opened the computer other than to show us a photo or two, but I am sure when we left that he was on Facebook updating his status to Superman.
The MRI had not happened as of 7PM, but as Kim said, he is part of the captive audience and not going anywhere. They are open 24 hours a day and take outpatients first.
Jason dropped by to watch the next game and to keep Mr. Sweet-tooth company until he nodded off for the night.
It was a great day.
7:30AM waiting for Kim to wake up to hear his voice. Wow! Took forever to get through to him, but what incredible news. The doctors were so impressed with his strength and coordination that they removed the air casts from his legs (reduces chance of blood clots after surgery from not moving legs) so he could walk around the patient floor with no cane, no crutches, no walker and unassisted! He did two laps and is looking forward to more. Rest is still a huge part of his recovery so they do not want him over doing it. I told him I wasn't bringing in his Boston Marathon windbreaker anytime soon.
He really feels like this is over. He is so relieved that he able to move freely. He described his strength as if a tourniquet had been removed from his left side and he was set free.
Visitation is open. There are no set rules, but we were asked to wait until 11AM and to keep the other patients in mind. He has not special diet restrictions. The only precaution is if you have a cold or have been around anyone that has a cold. His immunity is low and is considered very susceptible to infection at this stage. You will find Kim in Proger North Building fifth floor room #561.
Tufts is accessible from the orange line. It literally stops at the hospital. Parking is across the street. This is not BIDM. Do not expect the same level of assistance or information from the non-medical staff. It's almost as if you are on your own here.


11-06-10 11:30AM We walked into the Intensive Care Unit to Kim's room and were shocked. Shocked. He was not only alert, but he was sitting up eating Thanksgiving dinner. His face and head swelling had gone way down by 30%. He looks better than when he had the brain biopsy in mid-August. There are two small bandages on the sides of his head where they secured his skull from moving during the procedure and one longer bandage around 3 -4 inches at the point of incision. His eyes were clear, normal shape and very little water coming from them. With all of the chemotherapy and other fluids being forced into his body he has looked as if he has had a slow steady tear coming from his eyes, but even that has slowed to a minimum. His smile was back to Kennedy glamour.
The most important thing we noticed was his swagger, confidence and sense of relief. He told us that this is the beginning of the end of this thing and he is ready to move on. Now these words can be misunderstood if read and not taken into context. He is referring to the end of the cancer treatment phase and the moving on was referring to resuming the new normal life that he will encounter. He understands that this is not over and truly will never be, but he feels as though The Docs (Joyce, Jamil, Wong & Wu) have gotten it under control where they will be able to manage this thing and allow him to lead a beautiful life.

6:00AM Checked in early with the nursing staff and Kim rested for long periods last night. He told Marjorie, his nurse, that he is excited to see his family this morning. He is also looking forward to having something to eat, but I did not want to put that in the same sentence seeing that the prior held a lot more weight than the latter.
All of his vitals were stable and he is feeling strong. By the time we left he was regaining his strength in his left side. The doctors and nurses were thrilled to see the progress in such a short period of time. There is no sign of bleeding on the brain, so it appears we have made it past the first critical hurdle. Now he needs to pass the infection stage.
The staff at Tufts haven't quite figured out who they are dealing with just yet. He is making them pause, laugh and smile. It is that baffled look of the BIDM staff when they first encountered Kim. They have no idea. His Doctor, Dr. Wu, has a great personality and is very warm. Marina and Kim have both taken to him and it is easy to see why.

Post-op: Success! Dr. Wu came out with the good news and we had a mini-celebration. There is still much work to do, but every indication was that the procedure was a success. He is resting in the ICU and will be able to have limited visitors tomorrow from 11AM - 8PM. The next 12 hours are critical watch for blood leakage in the brain. The following 72 hours are the risk of infection period for the incision.
Please refrain from hugs and kisses. He is susceptible to germs and you will not be Purelling your mouth, shoulder and arms. Please limit the number of visitors to two at a time in the room while in ICU. You will need to get buzzed in, so the nurses will police the activity. Rest is extremely important at this stage, but you all know how much he feeds of seeing you. Lots more to write, but I want to absorb the great news and take it all in.

11-05-10 Today is the day that the tumor leaves physically Kim's head. Last night he had already mentally kicked it out. He's not renewing the lease. "We made the decision to make an incision", he said last night. "First and second time this little bugger snuck up on us, now we're going to sneak up on it and cut it out!"
We didn't speak long about the surgery or possible side effects. He focused on the day after and the day after that. He is already planning dive trips with Paul & I all over the world. There wasn't an ounce of sadness in his voice. It was all excitement.
We have all of our Angels in place watching over him during his surgery, everyone is writing to say they will be surrounding him with white light, positive thoughts and prayers. He is well armed for this battle.
Instincts are funny. For some reason we try to fight and ignore them. They are merely messages from places/people that know far more than we will until we join them. Embrace these gifts. Let people around you know that you are aware. Surround yourself and others with warmth today.
I will post as soon as he goes into the Recovery Room. We do not have any idea on timeline or restrictions of visitors. This information will all be posted as soon as it becomes available to me. Surgery has been moved ahead to 7:30AM.


11-04-10 Kim called around 4:20AM wide awake after only a few hours sleep. He is excited for his surgery. 
Yesterday, he received a surprise visit from his youngest brother Frank's wife whom he had not seen in years. He was thrilled. In 1990 Frank was involved in a diving accident in the Red Sea in Egypt. His body was not recovered. 
Liz will be taking Kim in today Tufts Medical Center in Boston for his pre-op screening and testing of blood labs, MRI and EKG.
It's a weird day. I am not sure if I am bit numb or just that confident of the outcome.  My gut is confident, my head agrees, but something still has me nervous and I am pretty sure that is just concern of the simple fact of surgery. Dr. Wu is The Man according to Kim. I take his word for it and look forward to shaking his hand tomorrow after a successful surgery.

11-03-10 The decision has been made to operate. The call came in around 11AM this morning. It has been kind of mind boggling not knowing and how many circles this last week has taken with decision going of into different direction.
The is to remove the tumor in its entirety and have it analyzed to determine exactly what it is, why it isn't responding to the Methotextrate and maybe what it will respond to, if any.
With brain surgery there are many limitations, one being the amount of material that can be removed due to the positioning of the tumor and whether or not it is wrapped around any other matter. We don't have any extra's up above, so whatever Nature gave us has to remain to perform its natural function.
There are so many questions and possibilities that speculation is unending and probably not a good idea. The best idea is to focus on a successful surgery, healing and recovery.

11-02-10 Kim & Marina met with Dr. Wu - brain surgeon at Tufts. They both got a really good feeling from this doctor and signed their consent forms to undergo surgery. He is excited and looking forward to meeting with Dr. Joyce on Friday at BIDM to get her blessing to move forward. The security of knowing there is a plan is very comforting to them both and all of us.

11-01-10 Counts were still low. They have temporarily stopped Temodar - pill form of chemotherapy until his counts rise again. His body and mind need the rest.

10-30-10 And in this corner weighing a slender 199.8 lbs is Kim Kennedy...? Wow! He told me he couldn't even touch his toes, because his legs were so bloated. Marina was going to buy him a pair of sweatpants today because his pants were not able to be buttoned. He doesn't want real pants, because this is only temporary and he is not settling in.
Misha was in rare form, as usual, answering the telephone pretending to be Kim. In her deepest voice she said, "Tommy, it's Kim". I was giggling and I said to her, "What's up Kim?" in a bravado type of way. She didn't know what to say. There was silence for a moment then she said, "I gotta go." Kim grabbed the phone laughing. During our call she was pulling and tugging on his legs and arms. He kept saying how strong she was getting. He mentioned that she was wrestling him to where she wanted him to go. He looked at her and said, "Do you want to wrestle Tommy?" She nodded yes. "Do you think you can beat Tommy?" She thought for a moment and nodded yes. Kim asked if she was ready and she nodded her head in the affirmative and hit the floor doing pushups getting all jacked up for our match. We set up a wrestling match between us for this weekend. I may be in trouble! Her internal fairy princess is in constant battle with her high level of Russian testosterone.
Lots of uncertainty this week with numerous appointments at different times and various locations. In the end it is Kim's decision after being presented with all options of care, risk and success rates. With each decision there are different risks and avenues that will lead to additional choices that must be made. It is overwhelming, but he is so focused on his family's well being that he will always make the choice that will provide the best benefit to them regardless of self. Lots of people should be watching this act of selflessness. It is amazing.


10-29-10 Special moment yesterday morning with Kim. He sent a text at 4:32AM letting me know big changes were in the air and he was concerned. We spoke for 45 minutes or so. Actually he spoke and I listened. I was thankful he was doing most of the talking because I could not control the tears from flowing endlessly out of my eyes. When we got off the phone I went up to shower and it was indistinguishable between the water and tears on my face. My body was shaking as if I had hyperthermia.
I forced myself to take a breath, then another one and then one more.  I forced myself to examine why I was crying? It dawned on me that I was just scared. I had forgotten who was in this fight.  It was Kim. My fears were brought on by this battle and not the war he been engaged in since January 4th. My pain was a simple manifestation of the unknown.
I thought about battles and how soldiers must feel going into them. It is not so dissimilar to sporting events. If you have faith in your leaders and you do as you are instructed you will be victorious, because you will focus on the task at hand and not the fear of the unknown. We cannot win the battle looking too far ahead. We must fight today's fight and tomorrow will bring another challenge. Line them up and knock them down, one by one.
Life always brings Kim and I back to the water. I started thinking about challenges and how we have found ourselves in some peculiar situations far from shore. We always rose to the challenge. Then I started thinking about some of the funny stories. Kim is a nut underwater refusing to believe that any lobster is too big or too far in a hole. He sticks his hand into holes that are small and winding where the lobster has the clear advantage. One time back in our earlier years of diving I spotted a lobster that at that time was the largest I had ever seen. Underwater objects appear 25% closer and 33% larger than on land due to refraction of the flat lens of a scuba mask. I pointed out the lobster to Kim and his face lit up. I witnessed him dive down, close his eyes, turn his head and jam not only his hand, but his arm all the way up to his shoulder into the hole after the lobster. He was blowing bubbles as if in distress. I thought the monster had him in his clutches. Immediately I started pulling on Kim's body to separate him and the lobster. With his free hand he started hitting me, pushing me off of him. He had the lobster right where he wanted him. Moments later, Kim pulled out a 20lb lobster clutching him with both hands.
It was his persistence, lack of fear and internal fight that he was able to accomplish wrangling this lobster. My body not only stopped shaking, but I was warm again and the edges of my mouth were pointed towards the ceiling. It was that simple. I was grounded and ready to take my position in a supporting role again.

This is the picture I sent him from my phone on my way to work:



These are Kim's scuba gloves. They were going into retirement at the end of this season. Now they are going into a frame and will sit above my fireplace to remind me never to question who is in the ring with the cancer cells.

The message read, "Do you know what this picture represents? A fighter!  These have brought fear into bugs all over Cape Cod Bay. We just changed challengers. Go get'em!"

Lobsters are referred to as bugs. Kim refers to cancer cells as bugs and visualizes them like the creatures on the Musinex commercials. Normally I would wish both fighters good luck, but not this time.


10-28-10 Kim met with Dr. Joyce and they have decided to table Plan B and move to Plan C, which is the surgical option. There are lots of explanations and details, but I want to have everything right before releasing the details. They are continuing the pill form of chemotherapy next week and will consult with Kim at some point during the week to establish timelines, risks and rewards.

10-27-10 Marina called today with a trembly voice and I wasn't sure what was wrong, but I didn't get a bad feeling. She was apologizing for calling me at work, but she needed to talk to me. She met with Dr. Wong and he explained everything to her. He explained how the Methotextrate was a 70/30 chance. How the new plan they are devising for Kim is in the 90/10 chance and that they where looking for ways to increase those odds as a team. e reassured her that there was an option for Plan C even if Kim fell into the 10% chance. Dr. Wong put her feet back on the ground underneath her. She was reaching out to do the same for me, as hopefully I am for you.
Stopped by the hotel today and found George sitting by Kim's side having coffee as they were admiring the beautiful view of the New England foliage from Kim's window. We sat for an hour or so chatting prior to a surprise visit by Dr. Mahadeven from the Department of Radiation Oncology. He was a nice man that explained who he was, what his role would be and how they were going to "eradicate" the tumor and any other cancer cells hiding in Kim's brain. He promised to stop by again and will set up a meeting with Dr. Wong, Dr. Joyce and Dr. Jamil. With all this brain power the cancer doesn't stand a chance.
Kim reinforced his mindset of ready to battle. He described his big three - January 4th initial diagnosis, August 19th seizure/discover of brain tumor and October 26th the day the results proved the chemotherapy alone was not working and the feelings he had on each of those days. The feelings were actually similar, although very different. The initial onset was shock, denial and fear of having been diagnosed with cancer and its progressed stage. The seizure brought on another whole set of fears and shock, but denial played no part. He had reassurance that the chemotherapy had beat it once that it would beat it again, plus he had that massive distraction of the Lobster Party. The latest development didn't shock him. Disappointed him, but not shocking. It has placed him in a good place where he is ramping up for the fight. The failure of the chemotherapy has actually sparked his desire to focus on the obliteration of his cancer. He understands that the only way he will be a candidate for the stem cell transplant is if the cancer is eradicated and he is healthy enough to receive it. He is ready. He isn't putting on a show.
David showed up with his usual goodies for Kim, which always consist of coffee and Munchkin donuts. Kim goes after them like your children will go after their Halloween candy on Sunday. He must have had a half dozen before David was able to even have a seat. I left maybe half an hour after his arrival. I called back to check on a few things when I got home and the two of them were doing  laps around the ward walking off some of that water weight. Kim certainly has an awesome group of friends.

10-26-10 The MRI did not produce the results we were hoping for today. The tumor has no signs of shrinking despite all of the aggressive treatment Kim has had to endure up to today. The doctors and Kim are moving to Plan B, which will involve radiation therapy. Radiation is normally used to treat areas that are very specific, but Kim's condition is systemic and they will need to cover a large area. With all treatments there are risks, side effects and even the possibility of no results, as we just encountered.
They are confident that the radiation is the next best option. Kim agrees and understands the risks associated. His faith in the BIDM medical staff has actually grown stronger and he is fully behind any treatment that they offer him.
They have opted to continue the chemotherapy, steroids and anti-seizure medicine until he begins the radiation in two weeks. He is looking forward to getting started.


10-25-10 The day started as normal. Kim opened his eyes, yawned and thought about what he needed to bring with him to Beth Israel for the next round of treatment. Before getting out of bed his left hand started moving involuntarily. This caused the onset of panic, because it was how his seizures started. The movement of your body that is not under your control must be frightening, especially with the glimpse of what can come from it as an end result. This is where knowledge is dangerous, but extremely helpful. Marina noticed the movements of his hands and the fear in his eyes. She grabbed his hand firmly, but lovingly an held on until the tremors passed. Misha jumped in bed and rubbed his arm. This was all he needed. They movements stopped, but the love did not. They calmed each others fears and moved forward.
His doctors did not like the news and performed a series of test to see if there was any signs of damage or chance of another recurrence. All seemed to be normal. They ordered another MRI just to try to see if they could detect any growth or hopefully any shrinkage of the tumor. We are still waiting on the results.
I knew Kim was going in today and we planned that I would just show up after work. It was around 4PM, when Marina shot me off a text that he was heading down to have his MRI. She was not at all in a panic and did not offer a reason. At first I did not even question it. Then it dawned on me that he was not scheduled to have an MRI. Not until after at least Round 6. Why was he heading down to MRI? What had happened? So, I packed up and headed in.
By the time I arrived at BIDM, Kim was back in his room and Marina had left for the day. It's funny, because I see right past the bloating of his face, hands, stomach and feet. I cannot look past his eyes. It easily could have been concern and worry of the unknown, but it comes out and puts a strangle hold on me. It is a yearning for help. It's that same look you would see if someone were hanging off a cliff  or if they were struggling to stay afloat in the water and they were reaching out to you. There isn't a panic, but more of a longing to be rescued just patiently waiting. What I wouldn't do to have long enough arms to make this all go away.
We won't have results until later today. There may be a complete change of course. Kim may need radiation to get this tumor under control. He may not. Right now, he is waiting. Right now I am praying.

10-24-10 The Hockey Fights Cancer shoot was as amazing and inspiring as expected. The Kennedy crew went in with the intention of making the children forget they were in a life battle for just one moment in their brief lives. Each person on his crew knows intimately how each of the family members are on an emotional roller coaster, questioning their faith and blaming themselves every day for something that is clearly not their fault, but they need someone to blame. God, self and their partners are usually the target of their anger. Kim, however, sees the disease through the eyes of the children as they have a bond that will never be broken. They are part of an exclusive, ever expanding group that view life and moments differently than we ever will or have the ability.
There were a dozen or so families there. Each with a child that had a different type of cancer. They were from different cities and towns. They didn't know one another, but they were all together to raise awareness. Gathering in these groups is beneficial to the family members because they can talk amongst other families that are affected and share coping methods. But yesterday was different. It was a day where their children were running around with huge smiles on their little faces. Laughing and giggling at their new best friend as he makes funny faces at them to get them to smile.
It all started with introductions. Then the magic began. It started in their eyes, then turned into their smiles and then laughter. As you looked around the room, it was not only the children smiling. The parents were grinning ear to ear. The domino effect had began.
One little one actually yelled out, "THIS IS SO MUCH FUN!" I am sure this will ring in his parents ears for decades.
That is only one of the gifts that Kim blesses us with without any effort.
The Bruins organization treated everyone to be special guests at the game. The Bruins lost 3 - 2 after a poor first period, but nobody left that building a loser. They were all winners.
Kim was exhausted by game's end, but loved every minute of it. He enters BIDM tomorrow for Round 5. Again, this treatment will be aggressive, but he did amazing with Round 4, so let's keep it going and keep the faith.




10-23-10 Kim will be shooting the Hockey Fights Cancer benefit with the Boston Bruins today over at TD Banknorth Garden. I am sure it will be an emotional day for the children and for Kim and his assistants. The below link is where you can research this wonderful cause and donate if you choose:
http://www.nhl.com/ice/page.htm?id=25343

10-17-10 What a nice relaxing weekend. I have found a new morning buddy in Kim. He is getting up in the 5AM hour and reaching out. I love it. It is solid, uninterrupted talk time. He is so happy with his own progress, life, medical staff, family and friends - which at this point the latter three are melting into one.
This weekend Kim started the next phase of treatment, which is a 7 day on 7 day off program of Temodar - a pill form of chemotherapy. This will be in conjunction with the inpatient liquid Methotextrate 5 day cycles. On top of all of the chemotherapy medicines he is now swallowing large quantities of anti-nausea, anti-seizure, steroids and other pills. There is a risk with every pill and a benefit. He is taking so many pills with such a regimented schedule that I said to him, "wouldn't it be great that when this is all over and done that you will actually be organized?". He laughed for a minute and said, "not a chance, brother. You got me for the rest of my life."
The Boston Bruins have requested Kim to shoot the Hockey Fights Cancer benefit program with them. How fitting? He will shoot young children that were stricken by this awful disease. We chatted a long time about this and how it is only the tip of the generosity that is going around right now and will only spiral into something bigger. Every where we turn now we are hearing about someone else that has been touched by cancer, but within the same moment we hear of benefits, fundraisers and people going into remission. We cannot focus on the negative side of all of this. Kim certainly is not.


10-15-10 It was 5:32AM when I noticed I had missed a call on my personal cell. I leave it on vibrate at night so that I won't be woken up by a wrong number of someone out celebrating a little too hard. I looked to see who it was....it was from Kim's cell. My heart stopped briefly. It was clearly pounding out of my chest. I was afraid to listen to the voice mail, but was compelled. The process of actually accessing the message seemed like eternity. Finally the message started and it was Kim. He wanted to wish me a good day and tell me how happy he was to be alive and lucky to have us in his life. He got released yesterday around 3PM. He weighed over 190 lbs! He went upstairs and fell asleep until 5:30AM. He lost 10lbs overnight. It was going to be a good day.

10-14-10 Amazing! Just four days after being admitted for his most aggressive treatment he was released. When visiting him I observed him drinking water like he had never seen it before. He managed to flush the toxins out of his system in record time. His kidney function is normal and that is huge while under Methotextrate treatment. Dialysis is still not out of the picture, but knock on wood that it will remain that way.

10-13-10 With this being Kim's third day in the hospital the nurses decided to allow him to shower. He was bloated as could be and really needed to be freshened up after the massive amounts of chemotherapy and diluting fluids being forced into him. They unplugged the chemotherapy from his port. They waited for him to stand and regain his balance to walk. As he moved forwarded the nurses started laughing and telling him to stop. Kim did not know why. He had inadvertently grab his chemotherapy tree and was taking it for the walk. He was not longer hooked up! After his shower he did a few loops around the ward to try to stretch his legs and bend his joints. The bloating has him really restricted. He had a good night.

10-12-10 There was a great cast of visitors today in a steady stream. He had cousin Chuck and mom, Karen, and Enid a friend that got him into the fashion business many many years ago stop by in the morning. I will post the picture as soon as he sends it to me of all of them together smiling in his room. His room, 1187, is the "penthouse" of rooms. What a view. Last night as the sub was going down we had an amazing light reflection show, which sent my mind into reflection of how everything is going to work out. It may not be right in front of us, but we can see the beauty in it if we look at the right angle. The sunset was hope.
Shortly after cheeseburgers and mac n' cheese we were visited by Matt, his fiance, his sister and Santa Claus. You may be thinking, ok, he's lost it or was he tapping into Kim's medicines, but seriously....he was there, even with a few ho ho's. Just another sign that a time of celebration is coming down the road. This year's gift will be amazing.
We chatted about inspiration and how it spreads happiness to so many people on so many levels. I noticed we were smiling a lot more. It was a nice way to say goodnight.

10-11-10 All is going as planned. They were hooking him up with his chemotherapy cocktails while we spoke on my ride home. He had David in visiting and Heidi coming to vist after work. They have him in room #1187 for the week.
His head is in a much better place today after spending all day with Misha & Marina. I guess Marina is not the only one who needs grounding from time to time. It's nice to hear the smile in his voice.

10-10-10 Kim snuck in a very productive, but tiring week between treatments. He managed a trip to New York with Rob and then made it to Rhode Island to reunite with Mariposa, David, Catherine & Jason.
Having spoken to Kim several times during the week, he was consistently calling himself fat and bloated. Having known him for as long as I have it was impossible for me to envision. He has always been so fit. What is making him think that way?
We pulled up on location and scurried across the street to see all. He made his announcement of our arrival and introduced us as necessary and the hugs, kisses and knuckles were flying. At first I saw nothing but my friend doing what he loves. He is so natural behind the camera. Then I noticed something different. It was how uncomfortable he was in his own skin. He didn't have that placid state about him. I looked further and saw things in his eyes that still give me goose bumps and I am keeping them to myself. Doubt has no place here. Maybe I am wrong. I am altering the energy that I received to insecurity with the unknown and nothing more. Today I will be silent and focus my energy to channel everything I can on positive, healing energy. He is clearly scared this week with the aggressive treatment ahead of him. All I can offer is to sit by his side, make him laugh and smile through it all.
We were exchanging voicemail and text messages this week and I was referring to him as Alvin. As we said goodnight he bounced back a goodnight Theodore. I am smiling now thinking back at this, but will not call him names anymore. There is no way he doesn't understand the love that I have for him, but I saw how his bloating affects him.
At the end of the shoot we all went to LJ's BBQ in Pawtucket. It was a treat for a hungry appetite that would satisfy any pallet. Kim was really excited to celebrate and feast. He chose to ride with us. Along the way, we were chatting and he was saying how much he loves Marina and Misha. It was nothing new. I had heard it before and have always believed it. What came out of the next few comments really got me, though. He mentioned how everyone keeps telling him how lucky he is to be alive and the doctors saved his life. He doesn't disagree with the statement, but people walking the streets in a drug induced coma are alive. He is happy they kept him alive long enough to have the self-realization of how truly lucky and blessed his life has been, how much he loves his family and friends. He just wishes they would understand the difference.
Tomorrow is check-in at 10AM. This cycle will include another chemotherapy, over double the Methotextrate, steroid and Keppra. He is entering a heavy-weight fight and will be battered around for the week. Next week's recovery will be challenging and short. He will be right back in again. He is very thankful for the opportunity to work this week.

9-30-10 Home sweet home. Spoke with him earlier and he was out walking Misha with Margaret enjoying his freedom. Lots of fun talk and a little about next round. Dr. Jamil & Co are going to increase his Methotextrate from 350ml to 800ml, which is the maximum and also double his steroid. There was mention of adding another chemotherapy cocktail in conjunction with the Metho, bit I did not write the name down. Kim plans to rest this weekend and spend as much time with Misha and Marina as possible. The folks over at Kenneth Cole hired him for a shoot on Monday and luckily with his treatment schedule it worked out. Also, not as a sidebar, but he is lucky enough to have a great assistant and friend, Q, who will be driving him to NYC for the day. I am still smiling from last night's "party" in 1166.   

09-29-10  I went in to talk to Kim about some difficult topics, but ones that need to be discussed regardless of how uncomfortable it made us. I walked in and his temporary roommate Matt and his lovely girlfriend we deep in discussion and swapping stories. Matt was feeling a little down and God presented him Kim for the day. Matt was being discharged last night, but commented before I left that he was going to request Kim as his roommate everytime he comes into BIDM. We have to remember that Kim is not the only one going through this, that others are out there. I think between the two of them they had taken four units of blood today. Needless to say, we did not discuss the tender topics. By the time I left, the room was filled with friends and he was in his glory. I wish for the others that they had his love and support. Maybe through osmosis they can receive some benefit.
What a difference with a boost in steroids and Keppra and lots of love and attention. He rebounded back from yesterday remarkably. His resilience is unparalleled. The doctors originally wanted to perform an MRI and other specific tests to analyze the tumor, but decided against it after his trembling went away. They did perform the normal battery of blood testing, neurological exams and even a CT scan. The soft tissue around the tumor has significantly reduced in size. The tumor outline was undeterminable at this time, but that is exactly what they expected. It is simply too early for measurement. 
The doctors did mention that rounds 4 & 5 were going to be brutal on Kim. They intention is to bring the Methotextrate to the maximum level. This will require additional days of flushing the chemo out of his system and longer recovery between treatments. Kim sees it as a necessary evil and is mentally preparing for it in the background. My take is that Marina will need the most support during the two treatments. It is hopeless feeling as a wife to sit and watch while your husband undergoes these aggressive treatments. She cannot even lie beside him to hold him. He stoicism is that of legend.

09-28-10 It was a restless night for Kim. He was very uncomfortable mentally, spiritually and physically. There wasn't a position or thought that seemed to comfort him last night. It is definitely evident in his voice when we speak. Turns out that his left hand started to twitch on him this morning. All present took quick notice and the nursing staff went into action placing him on high alert and precaution. His anti-seizure medicine, Keppra and steroid dosage have been increased to reduce the likelihood of another seizure. They have placed him under padded bed siding again. He will tell you he is in a puppy crate.
Marina was up visiting all day. As you can imagine she is down in the dumps wondering when Kim will be healed? When will he come home and not have to keep going back to this place? These are questions that none of us have an answer. All we can do is hope and pray that it is sooner than later and under the best of circumstances.
It's easy to smile when things are going great. The test is how you perform when you are battling through tough times. Where do would you be in his bed? If you do not find inspiration in this man and woman, then you are not paying attention. Marina and Kim have all of the resolve in the world to win this battle. I love them more than I could ever put in words.

09-27-10 Round three - checked in for the first time with the port. He eagerly anticipated getting started right away with the chemotherapy, but quickly found out that all of the testing still needed to take place prior to even order the cocktail. They have placed him up on the 11th floor on Reisman #1166 next to the neurological ward. He met with Dr. Jamil in the afternoon and Kim's new nickname is the butt-doctor...you ask, I'm not writing it.

09-21-10 The Kennedy's went on a field trip today down to BIMD. Kim had blood drawn via stick not port and had instant results. Marina of course cringed, but Kim smiled and made a joke and had the nurse laughing. He recieved good results from this weeks tests and Dr. Jamil was happy with his progress. He was warned that more Neupogen shots may be in the future, but are not required now. If you haven't seen Kim since this last round, then you may not understand why he is humming the tune to Puff the Magic Dragon. He bloated up and gained 16 pounds of water weight. At least we are calling it water weight. Spirits are high.

09-19-10 Richie and I got to watch the Patriots game with Kim on Sunday. It was great. We had wings, rice pilaf and lots of laughs and cheers...at least the first half. Misha was showered with My Little Pony gifts and couldn't have been happier. She danced around the apartment like it was Christmas. I had the honor of meeting Marina's mom who is staying with the Kennedy's for 6 months to assist with Misha and help Kim get around while out of the apartment. We take it for granted, but he cannot drive for 6 months or walk outside unaccompanied without an adult.

09-16-10 They relocated Kim to room #1170 - same building 11th floor. The nurses on 11 must have won a bet or something or threaten to strike.

09-15-10 After a mental recoup trip to NYC over the weekend to Fashion Week Kim checked back into Beth Israel for his second treatment. His trip was an amazing emotional uplift for his spirit and gave him energy to undergo this next round. Good thing, because there already have been complications. They were unable to extract blood from his veins due to the beating they have taken over the last nine months. He/they finally gave in and have surgically implanted a port into his chest above his heart. The Super PICC line was becoming painful and next to impossible to insert. He fought the port throughout the first round of treatment when initially diagnosed back in January. It was a hurdle for him, because the port stays with him when he goes home whereas the PICC line stays at the hospital. The flip-side is the port gets inserted once and there is no more pain. easy choice for me, but I am not lying in the bed to make that decision. I am thrilled we have no more PICC's.
Mr. Optimism is front and center asking if I need anything? How am I? How about Chrissy? I love it. There isn't a single pity cell in his body. His concern for others is an example to us all.
We have no medical updates as far as progression or reduction in mass size. The next image screen will not be for a few cycles to make sure the chemotherapy is working.
So, in short, the pool is open. Come visit. He will be here all week long. He's in room #732. If you cannot find it, then look for the crowd or the room full of laughter.

09-08-10 Today involved more meetings at BIDM, blood counts and a dose of Retuxin. This is the chemotherapy that most patients tend to have an allergic type reaction, so they administer liquid Benadryl into his IV to reduce his the chances, but it knocks him out. All went well and he rested throughout the night. The next round of inpatient chemotherapy starts on Monday.

09-06-10 It's Labor Day. Kim enjoyed a wonderful weekend with his family despite threats of hurricane Earl. He walked slowly around Amory Playground (the infamous site of his seizure) with Marina's mom (Evgeniay Filipovna) and Misha. I am not sure if they discussed it, but I am sure all of them were thinking of the last time he was down here, especially Misha. Kim told me that he has spoken to "his 911 angel" - his neighbor knew who she was and put them in touch.
As we all head off to picnics and family functions, Kim will be at BIDM getting blood drawn, giving urine samples, consulting with oncologists and having neurological testing performed to establish brain function baselines. This will be life for the Kennedy's for the near future and some of the distant. It appears that this disease will be with Kim for the rest of his life in some form or fashion. He has come to terms with it and mentally beat his drum each day to prepare for battle.
We chatted yesterday and got onto the topic of scuba diving. Towards the end of the conversation we ended up back on his battle. Not sure if he has mentioned the story about the little red crabs down in P-Town. They are about 4 inches wide and have a mad case of Napoleon's disease. As Kim & I float past them, they ready themselves for battle with the large alien beasts (Kim & I). We hover over them, not intentionally, but in passing as we approach our goal (the lobsters). The little crabs stand on their hind legs and swipe at us with their best effort in defense, but it is really offense. I liken Kim's tumor to the little red crabs. The cells will try their best to claw at Kim, but in the end when he is ready he will crush them at his will. He just needs us to watch his back and BIDM to provide him with his fight strategy ...and plenty of fluids.

09-03-10 This was a long week. Although the chemotherapy was completed on Saturday night, the concentration is so high and powerful that Kim needs to undergo a flushing period of IV bag after IV bag. The typical timeframe is 3 - 4 days to obtain a safe level in his blood and urine before he is released. This time it took him 6 days. With the super-concentrated chemotherapy the risk of organ failure goes way up. It can shut down the kidneys, liver and or bladder.
Although not a painful procedure it is still hospital time. Sitting in his bed with lines sticking out his arms, away from his family, looking out his window like a prisoner. Now, I am not saying he feels like he is in jail, it's just that he does not get any sunshine time in the yard like the rest of us.
Last week's procedure involved a Power PICC insertion, which was inserted under radiology care in order to eliminate some of the complications from the treatments he received fighting his last bout earlier this year. The chemotherapy path chosen was the tried and true Methotextrate, which has a track record of killing brain tumors. It also has a track record of possible side effects, but we have no choice. Let's take care of one thing at a time.
The time frames have not been set for the frequency or duration of his treatments, but ballparks have been thrown out there as inpatient for 5 - 6 days with a week home and then back in again. This is all dependent upon his blood and urine levels and his recovery period.
He may or may not lose his hair. He may or may not be able eat raw vegetables or fruit. He will definitely get "chemo brain". He cannot drive due to the seizures for six months. He will absolutely get better!


08-29-10 In preparation of and the thought of the party actually made me lose sleep, albeit only a few hours per night as it is, due to an internal conflict that was burning inside of me. Many issues, but the largest being that Kim would  not be present. I could not control my mind from wandering off into the negative and the possibility of how it would be in years to come if he really  was not there. I felt anger, deep sadness and emotionally unsettled. It was feeling like it was a pre-funeral reception and I was not, nor am I now, ready to accept that possibility. I struggled and struggled and tried to come up with a scenario where I would not be able to attend. Something that nobody would be able to question. Something....something...something.

As the testing continued with no results, the visits got more and more frequent and our alone time became more sullen, more "what if" focused with lots of emotions and as many tears and trembling lip conversations. It is not easy to hug a grown man while his body is shaking from the uncertainty of his fate. It is an empowering feeling of connection, but can truly throw your entire mental focus off of the trail of healing.

The whole last week I sat there talking and smiling about a party that I had no intention of attending. I watched as his excitement grew as the day approached, while my stomach turned. How could he be so excited about an event he was not going to attend? It was like watching Pay-per-View?! I just didn't get it. Almost to the point where I wanted to question his mental acuity. Each night I would get a telephone call and a report of the who's who club that hit him on Facebook, called or sent smoke signals relaying that they were coming to the party. Each person that entered the room, even by mistake, got a personal invitation from the remote host. The party was growing bigger and faster each day.

Thursday night I visited  The party was a living part of Kim and he explained that the cancer was doing enough to take away from his life right now that if we canceled the party it would take even more away from him. He pleaded that we give it our all and promise him that we would party like he was right next to us. He kept reinforcing that he would be there, that he is there. After that speech I was infected with his spirit. The show must go on.

Friday night we got news that was equivalent to a Mike Tyson punch right in the gut that temporarily took our breath away. The results had finally come in, the results we had been anxious to hear for two weeks now. Then we wished we didn't hear it at all. The mass turned out to be a lymphoma related to the non-Hodgkin's that he just beat in his blood had now found it's way to his brain. we knew this was a possibility, and actually the most likely, but it just does something when you hear those words again. He was surrounded by loved ones and it was an emotional time. I got word later that night, but not from Kim. Now the nightmares began playing out again in my head and I was angry at myself for sending out the invite for the party, for placing party music on the website for letting my guard down. I just kept telling myself that I knew, I knew something was wrong! Why was this happening?

Saturday morning a devastated Kim Kennedy called before 7AM. I braced myself as I answered the call from a man that had just received this kind of news. Within moments I heard myself saying I will be right there. I slid my coffee cup across the table and off to Boston I drove. When I got there I went to Starbuck's to see if I could cheer him up with some sweets and a cup of french roasted coffee. By the time I got into his room he had seemed to calm down, but I could still sense the uncertainty in his voice and mannerisms. The conversation offered topics of treatment options, doctor's and scientist's opinions and what he felt the right approach would be best for him and his family. His family is never far from his mind.

As the conversation drifted into more casual chatter the stream of daily visitors started to stream into his room. It was just after 12:30 and I decided to bid him farewell. I gave him a hug and told him we would speak tonight at the party. As I left the room I heard him telling stories and reliving the experience of how he ended up here, but more importantly to him how the party was going to be great and how lucky he was to have such great friends in his life. The attitude was amazing how grateful he was in the condition he was in. As I drove home I smiled knowing I was coming back with a surprise that should make him feel like he was at the party.

Now that I was home, the rush was on. I had purchase Kim two enormous lobsters - one for him and one for the nursing staff to enjoy as they watched the party via Skype from his hospital room. My sister let me cook the lobster at her house , which is located within 20 minutes from BIDM. That way the lobsters would be steaming hot and delicious. On the ride-in a sad Kim called once again. Reality was bearing down hard on him and he just needed to talk. He went on for 15 minutes before I cut him off and told it would be alright and that I would talk to him later, that I was on my way to the party. What he didn't know was that I was pulling into the parking garage and did not want to tip him off as to my whereabouts. 

As I walked onto the floor I noticed his door was closed. I assumed he was having an exam or private conversation with one of his doctors. As I made the loop around the nurses station I could hear him yelling. I opened the door and there he was on Skype talking with Marina and Misha and lots of friends. The excitement was like watching a child come down the stairs seeing all of the presents under the Christmas tree for the first time. It was a sight to behold. His happiness was contagious and I was infected within seconds. It all hit me like a ton of bricks. This party really was for him. He really did need this party. It was medicine for his soul. I went to town cracking open the lobsters and watched as onlookers gazed into the room in disbelief that an oncology patient was yelling into a computer chatting with 200+ of his closest friends while having fresh lobster served bedside. It was a sight to see. Soon Evalena and Kevin entered and it became a party. Hugs and kisses were shared and the laughter and amazement began. It was a party within itself.

There was one other thing I needed to take care of, so off I went. Driving down 95S I couldn't help but wonder how the next surprise was going to go over. It was top secret and I had only one other person in on it. That way if it got leaked, then I would know the source.  Before leaving I had texted Kim a picture of the surprise that was located in the back of my truck. I knew he wouldn't understand and was too busy to even read a text at that point. My secret surprise was safe. By the time I arrived, night had fallen, the music got loud and the party got rockin'. I entered the party and was greeted with many hugs and kisses. Everyone was feeling good and the energy was alive. I knew he was feeding off of it and I could not help but wonder why I had questioned his desire in the first place. Having progressed six feet from the entry point I was soon carted off to the Skype laptop as Kim was calling out for me. We goofed around asking if he was missing me yet and had light hearted chat in front of everyone. He kept telling me that he loved me and I returned the feeling. I also told him that he wasn't too sharp and that he need to step up his game. My statement confused him and I am sure the people around me. I asked him to look at the text picture again with Evalena and Kevin's help. They broke out into cheers. It was a picture of one of the two coolers full of lobsters that were now sitting up on the grilling deck waiting to be steamed for everyone to enjoy. One last love you's and off I went.

All night long as I had the opportunity to talk with people and I couldn't help but think of how I almost robbed him of this amazing party. That I was the nay-sayer and wanted to shut down. Thank God I did not get my way. It's not just me, but his doctors and nurses have told me that his attitude and strength have grown since the party. He is focused on beating this and trying to figure out his next great accomplishment. We spoke today and he confided in me his thoughts on life...."it seems that most people spend their lives planning for retirement and death...I am too busy figuring out a way to live."

 How can one man be this strong?

MEET MAX HEADROOM

KEVIN & EVALENA EMBRACE KIM AND WATCH via SKYPE THROUGHOUT THE NIGHT~ GOOD PEOPLE..GREAT FRIENDS!


08-25-10 11:45AM - The biopsy procedure went well. Kim is resting comfortably now in recovery. The preliminary result is lymphoma, but further testing is required. The mass has grown since his last MRI. He is scheduled to have a follow up MRI on the AM to make sure there are no hidden complications with the brain bleeding.
From here, Oncology takes over from a medical standpoint. We will continue our fight from the cheering section and support Kim & his family with all of our hearts and souls. Check back later and I will have a followup once he is out of recovery and alert enough to talk. (Notice the gold font. I am coming at this from all angles!)
Kim looked and felt great post-op. He was cracking jokes, telling stories, making us all smile and repeatedly telling us how lucky he was to have us all.

The lab analysis should be in today, but latest Friday. They are 99% sure it is lymphoma, but the 1% chance of something else prevents them from commencing the chemotherapy treatment. Kim is excited and ready for the challenge to conquer cancer twice in a year. Visitors are welcomed and encouraged, just be mindful that he did just have brain surgery and may nod off or need to do so. If you have a cold, then use commonsense and call him in lieu of visiting. I have to quote him, because he keeps saying this over and over like a mantra, "I'm psyched, Brother."

08-22-10 The weekend had many twists and turns for Kim with preparations for CT scans and MRI, drinking barium solutions and then being delayed or cancelled. With the diagnosis of the mass being the highest priority this was a stressful situation, not just for Kim, but for Marina thus for Misha. Finally on Sunday around 4PM they came and took him for his MRI. It lasted about two hours from the time he left the room until he returned. MRI's are not painful, but can cause a panic sensation in some people being alone cramped in tight quarters in a cold room with a machine surrounding your body and loud sounds of magnets bashing into one another rotating around at incredible speeds just inches from your head. He said he did fine, that he imaged we were diving. When he came out he told the technician that he caught a bunch of "bugs" for him. Bugs are a divers term for lobsters. The technician wanted to wheel him straight to the psych ward.
Over the weekend Dr. Wong presented two scenarios to Kim regarding treatment of the recurrent primary central nervous system (CNS) lymphoma. One would be to go the traditional route with Methotrexate, which would require a very similar series comparable to the pattern of the last chemotherapy program that he just completed. The other option presented is a clinical trial of Premetrexed (Altima), which would be on an outpatient basis with heavy monitoring of blood, urine and neurological testing in between doses. 
There are side effects of both treatments, as there are with all medicines and procedures. The program he just completed was a trial version and it saved his life. He is looking to return the favor to someone else and wants to choose the clinical trial, Premetrexed.
Dr. Jamil will be in today to help Kim weigh the options. Being a long time friend I have my opinion, but know better than to offer it. This is a life threatening choice and I certainly have no background in medicine to offer an educated opinion. It would be one made out of fear. A fear that I do not completely grasp from the outside. I would ask everyone to support his decision, because ultimately it is his to make and to live with for the rest of his life.


08-20-10 Last night was emotionally draining and questioned our faith for a micro-second. My sleep was peaceful with no dreams. There was no anxiety, no tears. Today we start fresh and clean. Kim & I spoke early and he told me how he had two seizures yesterday. I was shocked, because the Keppra (anti-seizure) should have prevented that from happening. When? What time? Where you sleeping, awake, standing, what? No, no he said. The first one was in the park with Misha and then another while in the ER?.......there was a long silence from my end....I was there all day with him. How could he not remember this? I asked anyway. He simply said, "oh, yeah". Of course Dr. Jamil and I discussed this and speculated that he is repeating the story over and over to everyone on the phone and that enters the room - including the staff members that ask over and over again, that he may have been on auto-repeat. He has not done that since.
Today he received a battery of tests. First test was at 6AM and the last was one was around 6:15PM. They ranged from ophthalmology to CAT Scan with barium. He saw specialists in the neurological field and others that are part of his diagnostic team.
As of right now, the mass on his brain is still unidentified. We are all eager to hear a treatment plan and get started. However, there are possibilities that this is not cancer and could be an infection. It would be rare, but is still a possibility. Even so, they need to identify the cancer in order to focus their efforts and to quote Kim, "Knock it out for sure."
For those of you wondering, although there is a strong probability that it is the same lymphoma, the treatment he received was the best in the world. Their plan was sharp and they executed beyond their expectations. Chances are Kim will not only have artwork in a museum someday, but also become a case study for his cancer. The medicines he recieved during treatment are incompatible with the brain. We have a natural defense for our brains called the brain-blood barrier and it protects us from foreign matter entering the system. With modern science they have developed a medicine that the brain accepts. Kim will most likely be taking part of another clinical trial medicine that is supposed to be the next super chemotherapy for lymphoma on the brain. He is really excited about it. You may be wondering how the cancer got there if the brain-blood barrier was there to protect us. It's sad, but true, that cancer is a very smart and worthy adversary. It can morph and divide at alarming rate confusing our bodies natural defense and it only take one rouge cell to make it on the other side. On the flip side, it only takes one strong individual with an enormous supporting cast to kick it's butt back into the stone ages.
Last night before I left Margaret was sitting bed side with Kim. Today I arrived and Dave H was there making him laugh. Soon after Jason, T, Walter & Ian showed up and it was a party in room #782 on Feldberg 7. I can't express enough how much the visiting does for Kim. He feeds off of the visitors like a vampire without the scars. If you are unable to visit, please write on the Guestbook, as he checks it every day. Watch, when you walk up you will hear one of the songs playing from his computer.
Marina and Misha are doing well. I guess yesterday she started to act out a little, but it is understandable. We must not forget these two in this equation. Ears and shoulders need to be extended. Play dates, children's museums, beach trips, lunch, sitting and listening at the park with Maxie running around in his wheelchair...



08-19-10 I got a call from Marina in a panic early AM today. While playing with Misha (daughter) and Max (dog) Kim had suffered a seizure while jogging in the park down the street from his apartment in Brookline. There was a lovely angel in the park that witnessed the entire event and called an ambulance while comforting him by rubbing his sweaty face telling him over and over again that everything was going to be alright. They arrived on site in moments and rushed him to the Emergency Room at the Clinic Center on the West Campus of Beth Israel Deaconess Medical Center.

During his evaluation Kim suffered a stronger seizure. They gave him two shots of Ativan (anti-anxiety) and one Keppra (anti-seizure) medicines to control his involuntary movements. By the time I arrived he was alone, Marina needed to leave with Misha to comfort her and take her from the hospital setting. Kim was rolled on his side staring off into the drawn curtain separating him from the next patient. We embraced and he just opened up. They had done a preliminary scan and they discovered a mass on his brain, which explains the seizures.
We were reliving all of the experiences from the initial cancer diagnosis and treatment. He was definitely scared, shocked and wondering why this was happening? His voice was weak and his spirit was wounded. He cried more yesterday than he did going through the entire treatment period. Who can blame him?
During our conversations he would nod off for quick naps in mid sentence, sometimes while on the cell phone. His eyes would roll around behind his lids. His left side was considerably weaker as expected. I was observing everything. The MRI process took us into the late afternoon. As we were being brought up for ambulance transport to the oncology ward on the Feldberg Building of the East Campus we were greeted by Mariolga. Kim felt whole again and they rode off together as I walked and gathered my thought sending texts and returning calls.
As he arrived on the oncology floor the nurses, aids and staff all greeted him with open arms, positive attitudes and smiles ready to take on whatever was necessary to support him with this next battle. It was kind of like a reception in a sense. Staff member after staff member would come and hug him, listen to his story and offer their assistance. Some time had passed and Dr. Jamil came in to give us his preliminary game-plan. Diagnose the mass, develop a treatment plan and execute. Kim wanted answers with a series of what if's? Dr. Jamil promised he would do everything, but answer what if's. There are too many scenarios and not enough answers. It would be unfair to everyone to guess in the dark.
There was a team of doctors ranging from neurologists to oncologists to MRI specialists trying to identify this mass/tumor. There is a slight chance that it could be an infection of some sort, but it didn't seem likely. They were working diligently to determine the identification and a game-plan. All we had to do is wait. I gave Kim all of my strength as did Mariolga. We embraced a lot and said many, many I love you's. He offered conversations that discussed taking care of Marina and Misha and I told him to do it himself, that I was too busy taking care of a friend that has a temporary setback on his way to full recovery.
Marina showed up right after work to see Kim and meet with the doctors. Misha is not allowed into the oncology ward due to her age, so we ended up in the Kid's Play Room. After play fighting and games of what's that, she asked me to read her a book. Oblivious to my settings, she hands me her selection and I froze. It was a book on cancer patients and chemotherapy treatments written for children. I thought I was going to read about Winnie the Pooh or something. I went into immediate ad lib and told her a wonderful story of about how good little children clean up their rooms to  make their mommies happy and how they smiled all the time. She looked at a picture and wanted to know why the woman was sad while she was holding her son in her lap. I told her it was because he was apologizing to his mommy since he forgot to clean his room...that he loved her very much and wanted to admit he made a mistake. That he loved everyone. She asked me if I loved everyone? I replied yes. She gestured with a shoulder roll and a negative nod that she did not. I asked who was excluded? She said did not love this hospital. It makes her sad and it makes her mommy cry. I couldn't breath.

KEEP THE FAITH!