Wow, I just realized it's been 8 days since I last posted......all is still going well and Ed has been home and infection free now for the longest period since February! He's been working some at the shop and puttering around with his toys a little, but I'm going to have to come up with a serious "honey do" list pretty quickly to fill in the gaps! He tires easily still but he's really looking so much better and is happy to be losing that "chemotherapy" look. He's got good color, his whiskers are coming back and his eyes are not so hollow. Getting all those chemicals out of his system has been a long process and he's getting better each day that he doesn't over exert himself.
We are still planning to go to the lake house for Labor Day, but Ed's been so anxious to see that beautiful scenery (bucolic bison and bursting bikinis - not necessarily in that order) that he decided to go up this weekend. He just left a couple of hours ago with his friend Tom to meet Ryan and some other friends up there. He's got plenty of sunscreen, sun protective clothing, a hat and strict instructions from me, which I'm sure he is gleefully shredding into little teeny bits of confetti that are going out the car window on the 101 as we speak! He is so anxious to get back to "normal" living......whatever in the heck THAT is......and he deserves to kick up his heels just a little. It would probably make me crazy and I'd hover too much, so I'm staying home for some rest, retail therapy and romping with my grandkids. It's a real leap of faith for me to leave him in charge of himself, but I gave him "the look" along with his list of do's and don'ts so I'm sure he'll be fine. That being said, how 'bout them Dodgers????
Be well, have a great weekend and TGIF!
Love,
Liz
Friday, August 19, 2011
Thursday, August 11, 2011
8 AM Thursday, August 11, 2011
Hi everyone..... all is well at the Engelker house so far this week. Dr. DeVos gave Ed a good review on Tuesday - blood counts are slowly creeping up, which is good and he appears to be right on track for the building back up process. He gave Ed the go ahead to start getting a little more active and pushing himself a little to build up some physical strength. No workouts and personal trainer yet, but more walking and activity to build stamina. He has a couple more days on the antibiotics and then we'll be done with those, thank goodness!
We're going to consult with an orthopaedist now to try and get to the bottom of the problems Ed has had with his arms and shoulders for several months now to determine if there is an injury, nerve damage, or just weekness that is causing the range of motion issues. Hopefully an MRI will reveal some answers. Ed is eating well and putting on a little weight slowly, which is good. He got a little too much sun last weekend and is suffering the consequences - viral lesions on his face that are caused by sun exposure, so I think he'll start to be more careful and keep hats and protective clothing on. No more baking on the boats for this guy!
Thanks for the delicious birthday cake that our friends John and Gail brought over and the cheesecake from Ronda and Kyle! It was a few days of yummy at our house!
That's it for now. Labor Day is drawing near and we're planning to go to the lake if we get clearance from the doctors. Our next appointment is August 23rd, so we're working to keep Ed healthy and strong to get the go-ahead.
Happy Wednesday to all! Chat soon! Liz
We're going to consult with an orthopaedist now to try and get to the bottom of the problems Ed has had with his arms and shoulders for several months now to determine if there is an injury, nerve damage, or just weekness that is causing the range of motion issues. Hopefully an MRI will reveal some answers. Ed is eating well and putting on a little weight slowly, which is good. He got a little too much sun last weekend and is suffering the consequences - viral lesions on his face that are caused by sun exposure, so I think he'll start to be more careful and keep hats and protective clothing on. No more baking on the boats for this guy!
Thanks for the delicious birthday cake that our friends John and Gail brought over and the cheesecake from Ronda and Kyle! It was a few days of yummy at our house!
That's it for now. Labor Day is drawing near and we're planning to go to the lake if we get clearance from the doctors. Our next appointment is August 23rd, so we're working to keep Ed healthy and strong to get the go-ahead.
Happy Wednesday to all! Chat soon! Liz
Monday, August 8, 2011
10 AM Monday August 8th, 2011
I know it's been a few days since an update.......please know that falls under the category of "no news is good news"!
Ed is doing well - no more infections, still on the antibiotics and his counts from last week's blood work were looking up. He is still feeling pretty weak, but with patience and more time without any infections, he will get stronger -- it's just a slow process. All of the procedures, chemos, medications and infections have certainly taken their toll, but his prognosis is good - certainly much, much better with the stem cell transplant behind him. Its not easy for him to be patient, and he expects so much from himself. He is really working hard at hardly working so his body can heal and recoup!
Thanks for all the birthday wishes, messages, texts, cards and calls. Ed especially wants each of you to know how much your constant contact means. He appreciates it all so very much. It was a quieter birthday than usual for Ed, but by next year, he'll be ready to paint the town again!
Ed has another doctor appointment on Tuesday the 9th and I'll let you know how that goes. We wish you all a good week ahead!
Ed is doing well - no more infections, still on the antibiotics and his counts from last week's blood work were looking up. He is still feeling pretty weak, but with patience and more time without any infections, he will get stronger -- it's just a slow process. All of the procedures, chemos, medications and infections have certainly taken their toll, but his prognosis is good - certainly much, much better with the stem cell transplant behind him. Its not easy for him to be patient, and he expects so much from himself. He is really working hard at hardly working so his body can heal and recoup!
Thanks for all the birthday wishes, messages, texts, cards and calls. Ed especially wants each of you to know how much your constant contact means. He appreciates it all so very much. It was a quieter birthday than usual for Ed, but by next year, he'll be ready to paint the town again!
Ed has another doctor appointment on Tuesday the 9th and I'll let you know how that goes. We wish you all a good week ahead!
Wednesday, August 3, 2011
3 PM Wednesday, August 3rd, 2011
Ed's Birthday Today! Certainly a celebration to have made it through everything to get to today! He came into the shop this morning and the entire staff sang Happy Birthday and shared breakfast followed by red velvet cake with candles and all. Tonight, Lou and the kids are joining us for a birthday dinner at King's Restaurant in Calabasas, where Ed loves the amazing bread!
Yesterday he had blood work done and we saw Dr. DeVos. His counts are doing great - on their way toward the normal range and everything looks good. He's still on the antibiotics, as they did identify 2 types of bacteria in his blood - Dr. DeVos felt they were from the chest port, so we're glad he doesn't need to have another one of those, EVER, if all goes well.
Ed is puttering around waiting for his hotrod to be finished and we're doing our best to keep him away from dirty things and places and keeping the hand sanitizer nearby. He's eating pretty well and hopefully will start to gain back his weight and strength quickly.
Happy Birthday to Ed and we hope to see much more of many of you in the coming months!
Liz
Yesterday he had blood work done and we saw Dr. DeVos. His counts are doing great - on their way toward the normal range and everything looks good. He's still on the antibiotics, as they did identify 2 types of bacteria in his blood - Dr. DeVos felt they were from the chest port, so we're glad he doesn't need to have another one of those, EVER, if all goes well.
Ed is puttering around waiting for his hotrod to be finished and we're doing our best to keep him away from dirty things and places and keeping the hand sanitizer nearby. He's eating pretty well and hopefully will start to gain back his weight and strength quickly.
Happy Birthday to Ed and we hope to see much more of many of you in the coming months!
Liz
Monday, August 1, 2011
9 AM Monday, August 1st, 2011
Okay, I can't believe its already August!!!! 2 more days until Ed's birthday.....a special one for sure given all he's been through this year. Blessings to have made it this far through all the chaos.
It was a great weekend......my grandsons' birthday party on Saturday was such a fantastic and fun day -- my daughter Stacy and her husband Gary are just rockstar parents and very creative with the kid parties! It was hot towards the end of the day out in Valencia and the party was at the park near their home, but a wonderful time was had by all! Lou spent most of the afternoon with Ed watching movies and sitting outside on the patio where it was much cooler in Thousand Oaks! She fed him minestrone soup from Octavio's Restaurant (he loves it!) and then Ed and I went and had pizza for dinner and watched another movie - "Harry Brown" with Michael Caine.
Sunday was heaven! Stayed in bed until almost 2 PM just lounging, watching the food channel, movies, dozing and drinking coffee. Had eggs and pastries in bed and then finally hoisted myself vertical so I could go get a manicure and pedicure and pick up some delicious food for dinner. Grilled steaks, baked potatoes, fresh green beans and parmesan crostini......yummy! Kristin and Pat came by and we had warm apple strudel and vanilla ice cream. We waddled back to our previous horizontal positions and Ed slept while I watched "The Blind Side" before falling asleep. All in all, a deservedly nice weekend without really any chaos.
Hope you all had a great weekend and will have a great week ahead. I take Ed back to UCLA clinic tomorrow for blood tests and exams. I'll report any news on the blog by Wednesday (the birthday boy's big day).
Liz
It was a great weekend......my grandsons' birthday party on Saturday was such a fantastic and fun day -- my daughter Stacy and her husband Gary are just rockstar parents and very creative with the kid parties! It was hot towards the end of the day out in Valencia and the party was at the park near their home, but a wonderful time was had by all! Lou spent most of the afternoon with Ed watching movies and sitting outside on the patio where it was much cooler in Thousand Oaks! She fed him minestrone soup from Octavio's Restaurant (he loves it!) and then Ed and I went and had pizza for dinner and watched another movie - "Harry Brown" with Michael Caine.
Sunday was heaven! Stayed in bed until almost 2 PM just lounging, watching the food channel, movies, dozing and drinking coffee. Had eggs and pastries in bed and then finally hoisted myself vertical so I could go get a manicure and pedicure and pick up some delicious food for dinner. Grilled steaks, baked potatoes, fresh green beans and parmesan crostini......yummy! Kristin and Pat came by and we had warm apple strudel and vanilla ice cream. We waddled back to our previous horizontal positions and Ed slept while I watched "The Blind Side" before falling asleep. All in all, a deservedly nice weekend without really any chaos.
Hope you all had a great weekend and will have a great week ahead. I take Ed back to UCLA clinic tomorrow for blood tests and exams. I'll report any news on the blog by Wednesday (the birthday boy's big day).
Liz
Friday, July 29, 2011
4:45 PM Friday, July 29th, 2011
Just a quick note to let you all know that Ed is home!!!! I picked him up today and I'm off to the pharmacy for antibiotics. They let him come home without a PICC line and we're going to try oral antibiotics. He'll definately be taking it VERY easy this weekend........he's on orders to rest and NO DRIVING until we see the doctor on Tuesday morning back at UCLA. Wish me luck keeping him sufficiently restrained, especiallty with the summer weather! My size 6-1/2 foot doesn't feel nearly big enough to put down sometimes. I guess I'll have to dig deep into my girl scout days and try some half-hitch or monkey's fist knot tying!
Tomorrow is a birthday party for 2 of my grandsons, turning 5 and 2, so I'll be going out to Valencia. Any babysitting volunteers?????? Just kidding......I'm sure Lou or the kids will come by to visit and I'll make sure he's got a fresh stack of movies. (I'll leave a coil of rope behind his chair, just for emergencies!)
Have a great weekend!
Liz
Tomorrow is a birthday party for 2 of my grandsons, turning 5 and 2, so I'll be going out to Valencia. Any babysitting volunteers?????? Just kidding......I'm sure Lou or the kids will come by to visit and I'll make sure he's got a fresh stack of movies. (I'll leave a coil of rope behind his chair, just for emergencies!)
Have a great weekend!
Liz
Wednesday, July 27, 2011
5 PM Wednesday, July 27, 2011
I was hoping to have a better idea about when Ed will be coming home, but so far the doctors won't commit to anything. They did detect positive bacteria cultures in his blood and as of yesterday they were still waiting for the sub-strain tests to come back to try and narrow it down so they can treat with the appropriate antibiotic. Today they identified yet another group of bateria in his blood, so they are making changes to his medications, but his fever has been gone for about 24 hours now, so that's a good sign. His counts were down today but not all the way back at ground zero, so we're hoping he will at least be home by the weekend.
They removed his chest port on Monday afternoon when they finally got him out of ER and into a regular room. This is a routine thing when a fever develops because access lines are the most likely source for bateria to enter the body. He will likely need to have a new PICC line inserted before he goes home so we can continue with the IV antibiotics that will undoubtedly be needed, but it's not painful and he doesn't need anesthesia for it. We're really getting pretty good at this routine (unfortunately!) but at least we know what to expect and we're prepared. Ed's feeling much better today than he was over the weekend. He really didn't admit to me just how sick he was feeling until I got back in town. I stayed overnight on Monday and most of Tuesday, but today I'm getting caught up at the office and trying to unpack and get reorganized from being away. I'll be back down there tomorrow and try and get some more information and an idea about their plan for the rest of the week. Its hard to find out much on the phone -- there are so many people involved in the process and no one person seems to hold the ultimate decision on a day to day basis because of the teaching rotations, etc. Its a little frustrating, but just par for the course in that kind of environment.
Hope you are all well and I'll get back with more information as soon as I have it.
Liz
They removed his chest port on Monday afternoon when they finally got him out of ER and into a regular room. This is a routine thing when a fever develops because access lines are the most likely source for bateria to enter the body. He will likely need to have a new PICC line inserted before he goes home so we can continue with the IV antibiotics that will undoubtedly be needed, but it's not painful and he doesn't need anesthesia for it. We're really getting pretty good at this routine (unfortunately!) but at least we know what to expect and we're prepared. Ed's feeling much better today than he was over the weekend. He really didn't admit to me just how sick he was feeling until I got back in town. I stayed overnight on Monday and most of Tuesday, but today I'm getting caught up at the office and trying to unpack and get reorganized from being away. I'll be back down there tomorrow and try and get some more information and an idea about their plan for the rest of the week. Its hard to find out much on the phone -- there are so many people involved in the process and no one person seems to hold the ultimate decision on a day to day basis because of the teaching rotations, etc. Its a little frustrating, but just par for the course in that kind of environment.
Hope you are all well and I'll get back with more information as soon as I have it.
Liz
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