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.