Medical Updates Jan '10 - Jun '10

04-04-10 Happy Easter to All ~ what a night. Last night I met some amazing individuals that love My Brother very much. The pre-screening went great and for all of those that were fortunate enough to attend you were witnessing talent on screen and off with the "it" factor. Special thanks to Kevin & Evalena is under the Successful Events page.

After the show, Kurt Steinberg hosted the Wrap Party at the Sheraton Boston up on the 25th floor with a suite that spanned the width of the building. We had amazing views of Fenway Park, the Charles River and all of Boston. Kurt provided us with food fit for a king including lobster rolls, shrimp cocktail, roast beef, turkey, veggie rolls, cheese platter, dips, beers, red & white wines. The rooms were filled with a buzz and people were high off the show. We were blessed with a special guest appearance by Kim. His reactions to everyone were as great as theirs to him. It was a special night.

04-03-10 Heading to Dry Dock for the last time to shoot the Everybody's Brother T-shirts with Marina. I'll try not to let it go to my head! We will post them on the website as soon as the pix are ready. Then we are off to Serena and THE RATTS.
Unfortunately, I received the letter of thanks from Dana Faber letting me know that I was not an exact marrow match for the young patient. I can only hope that one of the others that were being tested were her match. Please consider registering as a donor.

03-28-10 enjoying his time away from the hospital and enjoying his family for the weekend.

03-27-10 they released Kim last night and he is home resting.

03-26-10 This is the last day of treatment for Round 4 and they may let Kim go home tonight or sleep the night and go home in the morning. He is doing well and is excited to be reunited with his girls.

03-25-10 I had the chance to visit Kim tonight and was able to surprise him with the Everybody's Brother T-Shirts. He was so excited and blown away. He loves the design and always the intent. We were joined by Richie & Amanda. Some good laughs and stories were told for hours. It always amazes me that when I meet "his" friends how similar we are and easily we are friends. We are all so similar inside it is simple to see how we all love him and he loves us. The t-shirts and visitors took him out of the funk that Misha's love left him in the night before. I love to make him smile.

03-24-10 He is counting down the days to go home. He had a visit from Marina and Misha today. Since Misha is under the age of 12 and his daughter, the hospital allows Kim to visit her in the solarium outside of the oncology ward. This is to reduce the risk of infection to the other cancer patients. Since Kim lives with her, he would be subject to the same germs once released from the hospital when his white cells would be at their lowest. It was a wonderful visit until it was time to say good-bye. Poor little Misha had a meltdown and did not want to leave him. She is extremely intelligent and is starting to understand what is going on and seeing the pattern of him going to the hospital and getting weaker each visit. Of course this broke Kim's heart to watch her cry, but at the same moment filled his heart with love as he does not want to be separated from either of them. This is beginning to be the front line of his battle emotionally. There is nothing we can do, other than visit him to keep his mind off of his home.

03-23-10 Spoke with Brotherman yesterday and he told me had visitors  that brought him smiles and laughter. The pain from the second PICC line has gone away and now it's just a waiting game until he can go home again. During the treatments he gets what is known as chemo brain, which is a condition where his short term memory lapses, which is typical especially since they are cumulative. Other than that, he is just losing energy. His motivation and spirit are still high.

03-22-10 Whew! This guy is amazing. We started off the day laughing and sipping coffee from Starbucks before he checked in for Round 4. It is calming to sit, chat and take it all in beforehand. It started like any other time we checked in. The nurses all greeted him with smiles and giggles. We checked him into room 773 on Feldberg at 9AM. We were like two buds on vacation. Even though the rooms have two beds, the other is always for emergency holdings only. Each oncology patient has the utmost privacy and respect at this amazing hospital. So, off go my shoes and up on the other bed I laid down and we were goofing about the weekend and how fun it was to see Misha all dressed up with her new (to her) rhinestone purse and sunglasses walking around in sweatpants thinking she is a movie-star. The next thing you know we are ordering lunch. His nurse came in several times to check on him and explained that the IV staff was backed up and so we continued about our business. Soon one of the staff came in to draw his blood to check his white/red cell blood count.  Recently, Kim had been poked and prodded so much that his veins were scarring and flattening out. The IV nurse was precise and succeeded on the first attempt. An hour later, the IV PICC line nurse came in and the procedure went as close to painless as possible considering the application. We both sighed in relief, because he was dreading the PICC line. It is extremely uncomfortable, messy and causes pain and inflammation. The line enters the arm at or around the elbow joint, follows up to the arm pit and down to just above the heart. The queazy feeling that was running through my body was incredible. I know he HAS to do it, but he does not have to be so graceful and pleasant. The nurses continue to compliment him on his personality and demeanor. The next step in the process is the Xray team comes down with a mobile machine and verifies the tubing is located close enough to the heart. Inside the tubing is a metal wire that snakes along the path to identify its location. She finished around 1:30PM. His nurse kept checking back in informing us that the IV team was backed up. This would be the nurse that would administer the chemotherapy IV bags into the PICC port. Four hours passed and a new team of PICC nurses came into the room. They informed us that the Xray determined the PICC line inside of his chest was 2" short and they needed to remove it and place a longer one inside. The silence was deafening. My heart was breaking for him. I am actually shaking writing this even now. He swallowed hard and said, "let's do it, I trust you guys." As soon as the nurse started to clean the area with the disinfectant it started to burn. She removed the shorter line, cleaned the area again and pushed the new line in place. His vein was throbbed like a beating heart and tried to resist the intruding line, but the nurse pushed onward, upward and then downward in place to just above his heart. The pain now radiated from his elbow all the way up to his shoulder. They placed him on 24 hour heat pack therapy to draw red blood cells to the area to provide oxygen and healing power to the area. Soon the Xray tech was taking another shot and then we waited again. We ordered dinner and I tried to keep his mind off of the pain. We returned to conversations of Marina, Misha, photography and scuba diving. How lucky he was to have everybody around him and what great things he was going to accomplish when he was all better. Around 6:30 we were informed the PICC was in the correct location and the chemotherapy IV nurse would be down shortly. Somewhere around 7PM Kim had a surprise visitor, Heidi B.  His doctor came in around 8PM, checked him over, talked about his treatment plan. He was followed by the IV nurse. She had hooked him up and receiving his miracle medicines by 9PM. Now the clock starts ticking. He has 5 days straight of the chemotherapy IV and then one day of observation. He will be there until Saturday sometime. He was thrilled to see Heidi. I cannot emphasize the importance of visitation from here on out. The mental warfare is taking its toll on him. If you are healthy and have a little free time, please drop in to say hello. Since this webpage is for all viewers, I am not going to post the videos taken during his procedures here. They are very graphic and should be viewed only by adults with strong stomachs. If you would like to see them, please visit the Hospital Procedures page.

03-20-10 tomorrow Kim enters Beth Israel Deaconess Hospital tomorrow for Round 4. This time is a little different. Normally he would go through the 24/7 chemotherapy drip for 5 days, be observed for 1 day and sent home only to return the day after for an outpatient day treatment of Retuxin (chemo). The doctors have decided to reverse the applications. Kim assures me this is not due to concerns, but their aggressive "out-of-the-box" treatment style. It essentially shakes things up and does not allow the cancer to observe routines and plan its attack. Check in is at 9AM. He will have the central line placed in and be tucked into his hotel bed by 12PM.

03-19-10 it has been a quiet week. Kim has only revealed the mental toll that the treatments are taking on him. His spirit is still strong, but definitely maturing to the realization of his experiences. Today we were together when he ran into an older beautiful woman that recognized "the look" and approached him. They chatted about their experiences and stories. It turned out she is a survivor of the same B-cell non-Hodgkins lymphoma. Her first battle was 15 years ago. Unfortunately she was infected again 2 years ago. Although it was a different type, it surfaced the mental scars that were tucked away so neatly in her memory. She is 72 years old now and has beaten cancer again. She was an inspiration to Kim. All survivors are. Just imagine the impact he will have on others when he can wear the title survivor.

03-12-10 this week has primarily been a good week. No real side effects to speak of with the exception of the cumulative effect which results in lower white blood cell count and lack of energy between chemotherapy sessions. The way it models is the first week he is discharged, by the 7th day both his white cells (defensive cells in the blood stream) and energy levels drop to the lowest level. As the next week progresses his white cells will bounce back along with his energy level. As he peaks again, it is time for another round of chemotherapy and the cycle begins again. Today his white cell count was low, so the doctor (angel) order another round of  Neupogen (filgrastim) which is a drug given to patients who have neutropenia (low neutrophil count). An injection of Neupogen stimulates white blood cell production. It is a clear liquid that is usually given as a shot (injection). The side effects are bone pain and fever.

03-10-10 no news, but good news to report. Kim had more blood work drawn and the doctors were yet again encouraged by the results. He has no headaches other than a stiff neck to contend with this time. He has lost a little energy, but is gaining more every day with the sunshine and signs of spring. His next session of chemotherapy has been tentatively set for March 22nd.

03-05-10 Kim was released last night from round 3 of chemotherapy and sent home. Today he went in for his outpatient dosage of Retuxin, which is takes a physical toll on the body and mind. The medicine is invasive and causes severe allergic reactions in a majority of patience, so the hospital administers an IV Benadryl drip as a preventative. But none of that made a difference today, because today was his little angle's birthday-Misha turned 5 years old. Kim and family celebrated together in their apartment with a homemade meal, cake and pie. He continually reminds me that he doesn't mind fighting this disease, because he feels he is taking the hit for someone that may not have been able to make it. He never loses focus of what he is living for and he was staring that focus right in the eyes today.

03-03-10 spent several hours with Brotherman today and witnessed the mental/emotional toll that the therapy is taking on him while alone. Even the greatest optimist dips into reality while tubes are sticking out of your arms and bags of fluorescent liquid are dripping into your veins. He perked right up when I entered the room. We talked for hours on end. We made each other laugh out loud. At one point, I thought the nursing staff or a family member from another patient room would actually ask us to keep it down, but then we got the nursing staff involved and the laughter resembled the wave at a football game swirling through the ward. We walked "the loop" a half dozen times, each pass brought us by the nurses station and the giggles started. The doctors look at him with joy and amazement about his enthusiasm to knock this thing out. It's very emotional to witness. He still gets choked up while reading the guestbook posts, Facebook, get well cards and when he hears the stories of planning for fundraising events. We really have relieved the financial burden from his volume of worries. He told me he is at peace now, which freaked me out, because I have always associated peace with passing, but he meant here on Earth. He cited that his work laptop went crashing to the floor while trying to place the computer into it's protective briefcase. Three months ago this would have placed him into a tailspin. He said he watched it fall, turned to his chemotherapy stand and his blood pressure never rose one degree. He's teaching us all even from the hospital. He loves that we are now all connected. He is truly all about Friends & Family.

03-02-10 Spoke with Kim and he is beginning to feel the effects of the chemotherapy in the form of exhaustion. As you can tell by Facebook, he still has energy to post, still answers every telephone call and tries to respond to every text and e-mail. He has a special friend assisting with Misha this week and sitting by his bed side.

02-28-10 We walked in today and this is what we saw...


yes, that is fried chicken and HOT SAUCE! Apparently Kim was celebrating the good news from his PET Scan results. A dear friend had brought him a home cooked meal and he was loving it. During our visit he received a surprise from another visitor that brought him in a copy of his last shoot, which made the cover of The Improper Bostonian. He instantly went into photographer mode and was explaining the lighting, make-up and the rest of the process. He truly loves what he does and totally forgets about the lines in his arm when he speaks of his family, friends and life's work.

02-27-10 Kim is back in his "Hotel Room" for the week receiving Round 3 of chemotherapy. Today the uncomfortable procedure of placing the multi-port IV (PICC) Peripherally Inserted Central Catheter line, which serves as the entry point for all the chemotherapy fluid, IV, blood and other necessary medicines during his stay. Last session I brought him in and witnessed this procedure. It wasn't pretty and our friend was quite uncomfortable, but kept on making the nurse smile during the entire procedure with his funny stories. So, he has five days of treatment with 2 days of observation. I will be visiting several days this week and will keep you posted.

02-26-10 "REMARKABLE HOW THE CANCER IS RESPONDING TO THE CHEMOTHERAPY!" not verbatim, but what the doctor said to Kim regarding his PET Scan!!!! Keep the faith and positive energy all around him it IS working! Believe it or not, I am speechless.

02-25-10 We are still awaiting the results of the PET Scan. Kim goes back into Beth Israel Deaconess Hospital on Saturday, February 27th for the third round of chemotherapy. We are assuming that the results will be presented to him at that time. His headaches are now completely gone. He is feeling very energetic and ready to receive his next treatment.

02-20-10 Now we wait until Monday or Tuesday for the results of the PET Scan. Kim told me that while he was in the machine having the scan done they made him close his eyes. He said when he opened his eyes he couldn't see anything other than a ring of white light around him.

02-19-10 Today I am writing to ask all of you to think of Kim and surround him with positive energy as he is undergoing the most critical test to date.
The PET Scan - Positron Emission Tomography (PET) is a powerful imaging technique that holds great promise in the diagnosis and treatment of many diseases, particularly cancer. A non-invasive test, PET scans accurately image the cellular function of the human body. In a single PET scan your physician can examine your entire body. PET scanning provides a more complete picture, making it easier for your doctor to diagnose problems, determine the extent of disease, prescribe treatment, and track progress.
His appointment begins at 8:30 at Beth Israel Deaconess Hospital and will last for most of the day. What I am requesting is that we all surround him with positive energy. If you are religious, then pray for him. If you are spiritual, then surround him with healing white light. If you are atheist, then think positively about his recovery.
I would ask that we please remember to think of Marina and Misha during these times. The anxiety that they are undergoing today is immeasurable.
Thank you all.

2-12-10 Kim is back in BIDM for his 4th liter of Caffeine IV drip this week. Kim's brother-in-law, Obed Sullivan was the IBF Champion and now Kim has self-proclaimed the title -  "IV"F Champion. He sings songs like The Who's Pinball Wizard and changes the lyrics to "Pincushion Patient". The doctor agreed to delay the next procedure in hope's the last one may just be taking longer to heal the wound in the spine.

2-11-10 Visited Kim today. The headaches have not gone away. They increased his pain medicine, so he was able to eat, talk on the telephone and walk around a bit. Because of the headaches he was unable to eat and lost the weight he had gained back from the first round of chemotherapy. He has an appointment tomorrow (2-12-10) and they will perform another procedure if the headaches have not gone away or the level has not drastically been reduced. Looks like Tuesday or Wednesday for the PET Scan.

2-10-10 On Saturday, 2-6,  Kim had a spinal tap. He had an injection of Methotrexate, which is injected into the lower spinal column and travels to the brain. Methotrexate inhibits the metabolism of folic acid and is used to treat cancer in this region of the body. There is a 90% chance that patients receive no follow-up pain other than soreness injection site. Unfortunately, Kim fell into the 10% and has migraine headaches comparable to meningitis. If you spoke to him on the telephone he would muscle up a smile and try to joke with you, but I was watching the pain. He could not lift if head up. It has something to do with the equilibrium of the spinal/brain fluid being offset by the injection of the Methotrexate and the puncturing of the membrane around the spinal column leaking fluid. Tuesday, we went to Beth Israel for tests and caffeine pills for the headache. They doctor determined the symptoms to sever for pills and placed Kim on 2 Liters of caffeine IV. Each bag to an hour to empty and their hopes were that the headache would have reduced or been eliminated, but to no avail. Their sympathy for Kim is deep. They truly love him and are routing as hard for him and his family as all of us. Today, Kim went in and had a procedure where they injected a fluid mass outside of the spinal column to inhibit the leaking. He was there all day again. For the next 48 hours he needs to lie on his back or stomach as still as possible to allow the procedure to do its magic. More tests on Friday &  Sunday for red & white blood cell counts to determine his immune systems strength. Next week they will give him the PET Scan (see below 2-6-10 entry). Once they book the appointment I will be sending out an e-mail requesting everyone to simultaneously hold white light all around him during this test and until the results are back. This test will show the progress of the treatment and its affect on the cancer. Keep the Faith.

2-7-10 The nurses in Stoneman building released Kim with sadness as his next session will begin in approximately two weeks and he will be back with the original nursing staff in the Feldberg building. They threatened to do everything in their power to get him back in their ward for selfish reasons. I am telling  you this guy is a Rock Star! Some of his special treatments may seem silly to us on the outside, but are huge privileges to him. Saturday one of the nurses made him a freshly made peanut butter & jelly sandwich with a chocolate frappe to wash it down. It was one of the best meals he has ever eaten. K-squared was rooting for the underdog Saints to win...almost in parallel to his battle, but he is not the underdog in this fight. With all of the talent on his side this will be a lopsided victory.

2-6-10 Kim completed round 2 of his chemotherapy treatments with positive energy all around him. He again has all of the nursing staff under his Kennedy spell. It's hilarious. He is now waiting for his PET Scan - Positron Emission Tomography (PET) is a powerful imaging technique that holds great promise in the diagnosis and treatment of many diseases, particularly cancer. A non-invasive test, PET scans accurately image the cellular function of the human body. In a single PET scan your physician can examine your entire body. PET scanning provides a more complete picture, making it easier for your doctor to diagnose problems, determine the extent of disease, prescribe treatment, and track progress. This will most likely happen Friday in order for the latest treatment to take its course. 

2-5-10 his voice was much stronger today. He was back to the positive jovial nut as he is known. Once again planning our dive trips to hunt the elusive New England lobster and fresh sea scallop. His promises of a bigger and better Lobster Bash this summer are growing each day as he defeats the cancer slowly, but surely. Watch out, this is going to be some party.

2-4-10 today Kim received a blood transfusion. His red blood cells were low and he sounded weak while speaking with him over the telephone. He was told that this was par for the course and that the transfusion would allow his body to fight better.

2-2-10 today Kim started round 2 of his recovery medicine. We walked through the halls of the Beth Israel Hospital and you would have thought it was a rock concert with all of the doctors, nurses and cleaning staff glowing with smiles and adornment for our brother. It never ceases to amaze me how quickly he can touch someone's life. He was very brave and confided in me that these were his Angels and they were going to make him better, so he could personally thank each and every one of You for your love and support. He is truly overwhelmed with joy and gratitude that he actually tears up and cries, because he just cannot fathom the love that is surrounding him. Let's keep our finger's crossed, as Misha does with Kim, and pray that the healing juice running through his body will eradicate this monster and free our brother of this illness, soon.

1-29-10 had the chance to visit Kim at home today. He was in great spirits as usual. 
His next chemotherapy session begins Sunday, January 29th. He will be in the hospital for 5 days of 24 hour slow drip chemo and several days of observation. Once deemed healthy enough the Doctors will release him back to Marina's care at home. During the two week period he is home recuperating from the chemo, Kim will have to go in for several day treatments and to deal with whatever the next side effect may be in store for him.
This will be life for Kim, Marina and Misha - a.k.a. Snacee (snAY-C) for the next 6 months or greater. Please find it in your heart to visit the "How Can I Help" page and donate as often as possible. We will be his frontline of financial support. In typical Kim fashion, he is not worried about himself, he is worried about his family. Please help alleviate the worries and donate today.

KEEP THE FAITH!