Update Aug. 20

Hello all. This post comes with the heaviest of hearts. Kenny health has continued to decline. He is no longer able to respond at any capacity and his breathing has become extemely labored. At the request of Kenny's family, Kenny will no longer be receiving visitors other than his immediate family. Prayers and kind, positive thoughts are always appreciated. Please allow the Ayles family to spend the remaining time with Kenny free from the distractions of texts, calls and emails.

August 16, 2014

Hello all...its been a very tough week, so I'm just trying to give everyone a brief update... On Monday, Ken suffered a seizure while at Masonicare, and was brought via ambulance to the ER. We spent most of the day there, where he was treated and released back to Masonicare. Later that night, he was having trouble swallowing his medications, etc and trouble breathing, so he was again transported to the ER around midnight. He ended up being admitted with asperation pneumonia, and was put in the "step down" unit (which is a notch below ICU). He is recieving IV antibiotics for the pneumonia, as well as iv fluids, etc. He stablized and was moved into a regular room on Thurs night. Although he is technically stable, the overall picture has declined significantly. Ken's ability to swallow is significantly impaired, and he is really no longer able to eat or drink. He going to remain here at the hospital on "comfort measures" which is basically the hospital's equivalent of Hospice. I am deferring inquiries for status updates to my friend Sally, who can be reached via phone/text at (203) 994-3668 or email at lpsocci@yahoo.com. Thanks everyone & "much love" to you all!

August 8, 2014

Ken has had a rough couple of weeks. The doctor at the rehab facility had changed some of his medications, and he seemed to have an adverse reaction to the new meds. After going several rounds with the "Medical Director" here, and having to get two outside doctors involved, she has finally agreed to discontinue the meds that she had prescribed. Unfortunately, we have now wasted almost two weeks of very valuable time, in which he was unable to enjoy his family or visitors, or partake in meaningful physical therapy. I am hopeful that once his body has adjusted to being off the meds, things will start to improve. In the meantime, I am sorry that I have had to turn some visitors away...hopefully the coming week will be better. Again, if you are thinking of visiting him, you are most welcome to do so...if you could try to message me ahead of time, I can let you know if he is up for visitors on that day. I can be reached at jenjayles@gmail.com, or via fb private message or my cell. It also helps me better plan my time, if I know that someone is going to be spending time with him. Thanks!!!!

July 29, 2014

As I went to (finally) post an update, I peeked at a calendar to check the date (I barely know what day of the week it is, much less the actual date anymore), and I realized that today marks the 6th anniversary of Ken's first brain surgery. One the one hand, it seems like yesterday...many of the details remain so vivid for me... on the other hand, it seems like a million years (two brain surgeries, two clinical trials, radiation, and many, many chemos) ago. July 29, 2008 - two days before our son's first birthday - marked our first step on this journey. Anyhow...an update on his current condition is due. Ken was released from the hospital on Wednesday, July 16th. Prior to his release, we discussed at length what his options were for his treatment and overall well being. Any improvement that was sought in treating him with Avastin has already been realized. He remains essentially paralysed on his left side. His cognitive functioning is somewhat impaired as well. In light of this, Ken has made the decision to discontinue chemotherapy. He had one last treatment of Avastin on the 16th, and then was moved into an inpatient rehab facility. There, he is much, much closer to home, and has been having daily (during the week) physical therapy, occupational therapy, and speech therapy. He has been working on getting from bed to a wheelchair without the use if a lift, and trying to regain some muscle strength. Once he is done with his therapy and is in his wheelchair, I am able to take him outside where he can enjoy some fresh air and feel the warm sun. The grounds have a beautiful pond that he likes to look over, and sometimes I am able to bring the kids over to enjoy being outside with him. He seems pretty happy to be there, and not at the hospital anymore. He has a nice, private room, the nurses seem to take good care of him, and, believe it or not, he likes the food! Everyone has been asking about the kids...they are doing as well as can be expected, I suppose. It has been difficult for them, to say the least. They seem to be getting somewhat accustomed to Ken being out of the house, although at times they miss him terribly. We are all just taking things day by day, and trying to be grateful for the moments that we have and the love that surrounds us. I truly believe that we live in the most amazing community and are surrounded each day by true examples of bravery and resiliency. I cannot begin to thank the friends and neighbors who have taken care of my kids, grocery shopped, delivered meals (thanks to Lori's Meal Train I have not had to cook a meal in six weeks! Seriously, not one!) filled my freezer, shown up with coffee and "just listened". More importantly, the friends and family who have taken the time to visit with Ken, and especially those who have arranged to sit with him and be there when I cannot. It means the world to both of us, and I cannot adequately express the gratitude that we both feel. Feel free to call or send me a message if you would like his address...he does enjoy having visitors! He has an oncology appointment tomorrow, so I will try to update if there is anything new. Good night, and as Ken would say, "much love".

June 29, 2014

Kenny is STILL in the hospital. I think that this is day 20! His condition has remained about the same...he still has no use of his left arm, and only partial use of his left leg. He also still has some facial paralysis on the left side. The goal has been to try to get him placed in an outpatient rehab facility, as he still needs 24 hour care. However, none of the rehabs are willing to take him, due to the fact that he is currently receiving chemotherapy. Apparently, they must assume all expenses associated with his care, and the Chemo is too expensive and would cut into their profit margin. There seems to still be some hope that he will be accepted into the hospital's own rehab program. So far he's been declined by them twice, but is supposed to be re-evaluated tomorrow. Fingers crossed!!! Meanwhile, he has only been able to work with the physical therapists on the oncology floor, and they are somewhat limited in what they can do with him because they lack the proper equipment. Thankfully, on Thursday and Friday, they were able to get him up to the orthopedics floor and work with him on the parallel bars. When he has the bars for leverage, he has been able to pull himself up to a standing position and hold himself there for about a minute at a time. At least this is some progress, because I feel like the longer he is in bed, the more his muscles will atrophy, and the less likely it is for him to be rehabilitated. There also seems to be some disagreement between all of the doctors over his steroids. The Doctors had put him on a high dosage of Decadron in an effort to control the swelling in his brain until the Avastin kicked in. Now that he has had two doses of Avastin, the Docs at Sloan Kettering feel that he should be tapering down to a lower dose of Decadron. The Docs in Danbury, however, don't want to lower the dose for fear that the swelling will come back...even though the Decadron may be responsible for muscle weakness and confusion, and other ugly side effects. I am agreeing with the experts at Sloan Kettering, and I don't feel that he's being given a fair shot at recovery when the Decadron may actually be adding to his problems. So hopefully, the steroid issue will be resolved soon. I just wanted to say a huge, heartfelt Thank You to everyone who has so generously offered their time to visit Ken in the hospital, and bring us beautiful meals, and help out watching the kids. I cannot express how grateful we all are for your love and support.

June 19, 2014

Ken is still hospitalized for now. The weekend & beginning of the week were very tough, as he continued to decline. He had lost all of his left side, and was very tired and "out of it". However, the avastin & steroids seem to have kicked in, and he has improved dramatically. While still unable to get out of bed, he is now very alert and "with it", and now can puposefully move his left leg. The paralysis on the the left side of his face has improved tremendously, and he is able to feed himself. His sense of humor is returning as well, and he has been joking (flirting??) with his nurses. All good things!! I not sure when he will be released...as of now, they are saying that he will be here through the weekend and for his next dose of Avastin on Monday. Hoping for continued improvement in his mobility so he can come home!!

June 14, 2014

Hello, everyone. We have had another crazy couple of weeks. Unfortunately, Ken's MRI on May 30th showed additional tumor growth. The docs wanted to start him back on Avastin as soon as possible, to try to control both swelling and tumor growth. We had to get clearance from the surgeon (originally he was to wait 6 weeks after his hernia surgery to start Avastin) and insurance approval, etc. In the meantime, his motor skills had continued to decline. Fortunately, two of his brothers and their families had scheduled a visit over the weekend. We had a great time, and Ken really enjoyed himself! He finally received Avastin on Monday, June 9th. On tuesday, he suffered from a small seizure, and wound up being admitted to Danbury Hospital. The tumor & edema has continued to the point that he now has a "midline shift". His motor skills (and some cognitive functioning) have declined significantly. The Avastin can take 7-10 days to "kick in", so we remain very hopeful that this will bring some significant improvement. As of now, the plan is to get him out of the regular hospital (hopefully in the next few days) and moved into the rehab unit while we await improvement. Thanks to everyone for all of your calls & prayers. He does enjoy visitors, so anyone who is local and would like to visit is welcome...but please call or text me first just to be sure :)

catching everyone up...

I've been asked by several people to post an update, and when I signed on this morning I see that I haven't updated since early March! So, while I have a little bit of time this morning I thought I would sit down at the computer with my coffee and bring everyone up to date. March was a very busy month for us. While Ken's scans remained stable, the toxic effects of the BCNU really begun to wreak a little bit of havoc on Ken's system. His platelets, which I believe are supposed to be anywhere from 150,000-450,000 to be within "normal" range, had really taken a nosedive...down to about 6,000 at one point. This dramatically increases the risk for bleeding (or I guess, more appropriately, not being able to stop bleeding. Thankfully, this did not coincide with when he fell and hit his head on the ice!). When his platelets were really low, he would just begin spontaneously bleeding (mostly from his gums) which would lead to a trip to the Hospital or ER for an infusion of fresh platelets. Eventually, his white blood cells also took a dive, and he woke up with a mild fever one day which landed him in the hospital for about a week. The hospital treated him with IV antibiotics, as well as another platelet infusion, and a red blood transfusion. After the transfusion, he felt so much better - that red blood is good stuff! They finally traced his fever to an infection from some sort of microbe that had probably entered though his gums when he had had the trouble with bleeding. Meanwhile, halfway through his hospital stay, the rest of our household came down with the stomach bug! I am so grateful that while I could not be with him at the hospital, he was very well taken care of and he did not catch our bug...it was UGLY! I also must mention my eternal gratitude to my friend Bridget, who showed up at my house with desperately needed Gatorade and laundry detergent! and flowers, too! Somewhere in this time period, Ken had woken one morning with severe vertigo, and was unable to even get out of bed for two days! Thanks to another friend, Lori, we discovered the Balance and Vestibular Center in Danbury. They were able to completely cure his vertigo (which they think had actually stemmed from his fall in February)! We elected to do his physical therapy there as well, since they specialize in balance issues. April was somewhat less chaotic...Ken had another stable MRI - in fact, he had been stable for so long that the doctors felt that his tumor was either dead or at least dormant. They had decided to give him a little break from chemotherapy to let his body recover, so that if a new growth should appear, he would stronger and better able to fight it. While we were both elated with the news, I have to confess that for some reason I still felt somewhat uneasy accepting such positive news. Our friend, Tim, has been accompanying us into the last few appointments, and we decided that the overall tone of this one was "cautiously optimistic". We were to follow up in one month. Ken had asked the CT doctor about having a hernia operated on that has been bothering him, and all doctors decided that it was a good time to do so, since he had already been off of the Avastin since February and he would need to be off for 6 weeks before and after surgery. Should the hernia ever become strangulated, it would mean emergency surgery, which if on the Avastin could be very complicated...so everyone was in agreement that it was better to have the surgery now when the conditions were controlled. Mother's Day, the night before his surgery, Ken had a small (focal) seizure. He did not want to go to the E.R. and he had remained conscious and alert...the seizure seemed to only involve his left forearm & hand. We notified the Surgeon & her team, and the surgery went on as scheduled. He did really well, but was in significant discomfort throughout the week. On the up-side, the drugs that they had given him made him exceedingly pleasant! Since the seizure, the use of his left hand had significantly decreased, so before he even had the MRI on May 16th, I knew it was back. The MRI showed some "swelling". I had asked if it was a new growth or the same tumor that had been "dormant" and it appears to be the same tumor. Also, Ken had an infection from the surgery, so they can not start any treatment until the infection is cleared. I spoke later in the week with Dr. Dellafuente (Dr. M's Fellow) who said that the MRI is only slightly different, so not "super concerning" but they need to get him started on treatment, and Avastin is out of the picture for a few weeks due to the surgery. So her feeling was that they would probably get him started on Carboplatinum (which he has taken in the past) and then add in the Avastin later. This week has been very trying for Ken, as he is left handed and has lost significant use of that hand, which is very frustrating. He also seems to be having increasing cognitive & memory issues. We are headed in to NYC tomorrow for another MRI and to make sure the infection is all cleared up before we start anything new. So that's what's been happening with us...most of you probably stopped reading after the first paragraph, but for those who want to know the nitty-gritty...that should bring you up to date! I will hopefully get to update again after tomorrow and keep everyone better informed.

March 2, 2014

Hello, everyone! I guess I haven't posted in a while...thankfully, there really hasn't been much news to post! Ken turned 50 last week! Unfortunately, the day before his birthday, as he was walking the kids out to the bus, he fell on the ice and ended up with 21 staples in his head. Nothing like a head injury to celebrate a milestone!! We were able to have some fun anyway...two of his brothers made a surprise visit for the weekend, and Ken celebrated his 50th surrounded by friends and family and ended up having a wonderful weekend. This past Friday, he had an his bi-monthly MRI & Dr. visit at Sloan-Kettering. The MRI showed no visible signs of tumor growth. He has undergone 6 infusions of BCNU (in addition to bi-weekly Avastin infusions), which seems to be taking a bit of a toll on him as far as side effects. While the tumor seems to be responding to the treatments, the toxicity also seems to increase with each treatment, leaving him more and more nauseous and exhausted for longer periods of time. With that in mind, Ken is going to see a couple of specialists (in hopes of alleviating some of his symptoms) and then follow up with his doctor prior to the next treatment, and may possibly need to take a break from the BCNU. Thank you all for all of your love & support over the past few months!

September 6, 2013

Another great day in NYC! Ken's MRI remains stable! The majority of his symptoms can be attributed to side effects from the chemotherapy and the steroids. We enjoyed a wonderful summer in which we were able to to take many small trips (a great weekend in R.I. culminating with a Whale Whatching "adventure"!), and hang out at home with great friends (hours well spent!). The highlight of our summer was spending a week in Pennsylvannia with ALL of Ken's brothers - a rare occurrence - during which he also got to visit his and spend some time with her. Many precious memories were created!! Now we are settling into the school routine...looking forward to all of the usual fall activities. Ken's next MRI is scheduled for November 1st.

July 19, 2013

We have been having a very fun and busy summer! Ken received his first infusion of BCNU about 6 weeks ago. He tolerated the new drug very well, and his symptoms seem to have subsided quite a bit. He continues to receive Avastin every other week, which is now done locally at Danbury Hospital with Dr. Rella. This is working out quite well for both of us as it is so much more convenient than traveling all the way into the city for a 20 minute infusion! In between treatments, we have been taking advantage of his renewed strength and have enjoyed wonderful weekend travels to Rhode Island and New Hampshire, as well as trying to spend as much time as possible simply having fun with friends and family. We both truly treasure these times and are so greatful to everyone for making them all possible! Today, we returned to New York for his MRI & appointment with Dr. Mellinghoff. I am happy to report that his scan was stable, and even shows a slight improvement over the last one!! Unfortunately, his white blood cells were too low for him to receive the BCNU today...he did get the Avastin, and we will try again for the BCNU next Friday. Overall, though, we were both relieved and happy with today's results! The next MRI is scheduled for September 6th!

May 30, 2013

Hello, everyone...I am sorry it took me so long to post an update, but sometimes I have a hard time believing that anyone actually reads this blog until someone asks why I haven't posted! Ken had his MRI and appointment with Dr.M. on Thurseday. The MRI results are a bit complicated, so the following is my attempt at an explanation. The Avastin affects the blood vessels in the tumor, so it absorbs less contrast during the MRI. This makes it appear differently on the scan...actually, when you look at the scan (compared to the previous month's scan) the tumor almost looks like it's dissappeared. In fact, the official read from radiology shows no significant increase in size. However, the reading is somewhat misleading, and in reality the tumor may have actually grown slightly. Due to the new growth, coupled with the fact that Ken is now beginning to show some symptoms, Dr. M. has decided to change his chemotherapy regimen. He will continue to recieve the Avastin every two weeks (which will now be administered locally), but he will now be receiving BCNU (instead of Carboplatin) every 6-8 weeks. The tumor seems to be growing into the Occipital Lobe, which explains some of his symptoms (some of his balance issues may be related to a deficit in his visual field). He also has been having some headaches as well as some tingling and shakiness along his left side. Other han that, he is feeling pretty well, and continues to enjoy volunteering at the kid's school - for some reason, all of the kids there treat him like some sort of rock star! We are both looking forward to spending a few days away as a family in either Cape Cod or Rhode Island in the near future!

April 29, 2013

I realized today that I haven't posted an update in a while...it seems that the past few weeks have just been crazy busy! Ken had his first round of chemo on April 11th. He received two drugs: Avastin (which he will receive every two weeks) and Carboplatin (which he will receive every 4 weeks). So far, he seems to be tolerating the drugs pretty well. The Carboplatin is the harder of the two drugs to tolerate and has more side effects, so he has to increase the steriods and take nausea meds before and for a few days after recieving the drug. The first weekend he was nauseous, and extremely tired, but his symptoms seemed to subside within about 4 days. He's had a few other minor issues, but nothing too terrible so far. He had his second round of Avastin today, which he seems to have breezed right through. The biggest side effect of the Avastin is an increase in blood pressure, and his blood pressure has remained stable thus far. In other news, his latest MRI results were good, his tumor is "stable" when compared to the March 19th MRI, and shows no significant change. His headaches and tremor seem to have subsided as well, and Dr. M. is starting to decrease his daily steroid, which makes me happy. Hoping the rest of the month continues to go well!

Starting Chemo...

After many phone calls & discussions with various medical professionals, Ken will be starting Chemotherapy tomorrow. We traveled back to Dana Farber, whose doctors concur with the surgeon's decision not to operate. Apparently, the tumor has grown quite a bit (especially between February and March) and is too "fluffy"...meaning ill-defined and invasive, so they won't be able to remove a significant enough amount to justify the risk of surgery. There are no clinical trials available at either Sloan-Kettering or Dana Farber at this time - or anywhere else within a reasonable distance from home. I have also checked several cancer centers, including M.D. Anderson and the Mayo Clinic (all locations), both of whom offer some interesting trials, none of which Ken seems to qualify for - either due to tumor grade, size, or operability. Due to the agressive nature of the tumor, Dr. M. Does not want to delay treatment any further, so Ken begins Avastin tomorrow, to be combined with a second drug at some point (I think tomorrow is only the Avastin). We met with a local oncologist today - because the Avastin is a "protocol" drug, he can eventually recieve his infusions here in CT and cut down on our commute to NYC. That's all I know for now...he has an MRI scheduled for Tuesday, and a visit with Dr. M. The following week.

April 1, 2013

Dr. Gutin has decided that surgery would not be beneficial. That's all I know for now.

March 29, 2013

We were back to NYC today for a meeting with Dr. Mellinghoff, to discuss what our next steps may be. Since the last scan at MSKCC in November (the baseline scan done at Dana Farber at the start of the clinical trial in December is not in their system yet), his tumor has grown from approximately 6-7.5 mm to an estimated 5 or 6 Centimeters. It is already bigger than the one that they removed last March. It is possibly a grade 4, but still likely to be a grade 3. He is having some symptoms...a "pulsing" sensation in his head, as well as increased tremors in his left arm. The doctors believe that these tremors are actually focal seizures. He also seems to have a weakening in his left hand/arm. The first treatment option is surgery. Dr. Mellinghoff is going to speak with Dr. Gutin (his neurosurgeon) on Monday to see if surgery is a viable option. If so, it will probably take place within the next month. Beyond surgery, there is the option of another clinical trial (if one is available and he qualifies for it), some forms of chemotherapy, re-radiation &/or avastin. The doctor put him on a course of Decadron for the weekend, to see if it alleviates any of his symptoms, and he is no longer able to drive. We are scheduled to return to Dana Farber on Tuesday for bloodwork, etc. to complete the study, and will inquire with them on any other available trials up there. We will speak with Dr. M. again mid-week to discuss our findings in Boston and his meeting with Dr. Gutin. The next several months are promising to be tough times...we will do our very best to remain positive and hopeful, and thank you all in advance for your support.

March 19, 2013

Ken had his MRI & PET Scan in Boston today...long story short, his tumor grew again this month, and has now surpassed the 25% growth allowed for on the trial. In light of the continued growth, the Dr.'s feel that the trial drug is ineffective, and are removing him from the clinical trial. We are not sure yet what the next step will be, the tumor is not "exploding" in growth yet, so we have some time to figure things out, and will most likely return to Dr. Mellinghoff in NYC to explore our options. I will update when I have further details.

February 19, 2013

The latest MRI results show that the tumor is "stable" and Ken will be able to stay on the trial for another month!! There seems to be some question on whether or not there has been any growth...last month we were told that his tumor had grown 15% since his baseline MRI in December. Today they informed us that the actual growth last month had been 19%. The radiologist today determined that this latest scan showed no significant change, and was still at 19% since baseline. The doctor from the trial said that there may be a tiny bit of growth, but not enough to discontinue the trial...and actually the discrepancy may be in how the tumor was actually measured (due to its irregular shape) rather than the tumor actually growing. Ken's blood counts are good, and some of the "issues" he was having seem to have resolved themselves. His CPK has also gone from 350 to 320, and Ken said the EKG that they did this afternoon was fine. All good news, and a great birthday present for Ken!

January 23, 2013

Yesterday, Ken had his first MRI since he began the clinical trial. Unfortunately, the results were not quite as good as we had hoped for...his tumor did grow slightly. However, the study allows for up to a 25% growth in the first month, and Ken's tumor grew about 15%. So, he will be allowed to continue the trial for at least another month. Since it does take a while for the drug to really take effect, the growth may have occurred in the first few weeks of the trial, before the drug had a chance to build up in his bloodstream. The doctor said that this is not the first time that this has happened to someone in this study, so it is not unreasonable to attribute the growth to that. However, if the next MRI also shows growth, then that would mean that the tumor is not responding to the drug and Ken will not be able to continue on with the trial. While yesterday's news was not great; it was not terrible, either...the next MRI should be around February 19th, and we are hopeful the results will be better!

December 26, 2012

Hello, everyone! I am sorry that I haven't posted an earlier update... needless to say its been a long, stressful, extremely emotional couple of weeks. As far as Ken is concerned, he is doing well. He actually received his first dose of the study drug on Tuesday,Dec. 18th. Due to the horrific events in our town, we ended up having to bring the children with us to Boston for the first few days last week. Our dear friend Laura was kind enough to travel from Rhode Island to Boston to spend the day with our kids, so that I could be with Ken at the hospital for "day 1" of the clinical trial. He had to be closely monitored for several days, so once we knew he didn't appear to have any adverse reaction, I returned home with the kids so that they could get back to school, which was in itself an emotional experience. Later in the week, Ken's EKG's were abnormal, and indicated a possible heart attack. On Friday, they performed an echocardiogram and blood tests. The bloodwork indicated some possible damage to the heart muscle, but the echocardiogram was normal, and repeat EKG's were normal. They sent him home for the weekend, with a promise to return on Christmas Eve day. On the 24th, he recieved the study drug and again had an abnormal EKG, then they switched EKG machines and got a normal reading. All very confusing and frustrating. So tonight we are back in Boston...we met with a cardiologist today, who said that he is not concerned. While the EKG may have indicated a cardiac event, his tryponin (?) levels and echocardiogram are commpletely normal. He does have some thickening of the heart muscle, but the cardiologist claims that it is not something to worry about, and he sees no reason to take him off of the study drug. So, he is now on a daily dose...scheduled to return next week for more tests. Hoping you all had a safe and peaceful holiday, and wishing you all a happy new year.