Most of you who visit my blog know that Charlie has a significant speech delay. His muscles for speech production just did not develop in a timely manner. Those of you who also know Laura realize that no grass grows under her feet....she is a wonderful advocate for him and she and Ken work tirelessly to help him. And Charlie works so hard too...when I see him practicing his words it brings tears to my eyes.
The best thing is that Charlie does not know he has a problem....thanks to his terrific school and teachers (and his parents, too).
So I ask that you read Laura's blog entry and consider helping Radcliffe Creek, the wonderful school that has helped Charlie so much. Thanks!
Below is the link to Laura's blog.
I am busy getting ready for the "big move" to our beach house. I took a small load of "stuff" down there last week when I made a 48 hour flying visit! On Friday, I will take a lot more and on the 17th will make the final trip (Isaac will move in then). It is easier on me if I do it this way and do not have too much to unload and unpack, and can take my time settling in gradually. I tire so easily, which is hard for me to accept.
This week includes a hair trim (I do not have enough hair to really cut it), a lunch with high school friends, and an oncologist appointment -- but no scans.
Saturday we went to Charlie's 4th birthday party at a kids' gym. It was great to watch 15 little ones running around and having so much fun.... and Charlie was so happy. Today he rode the THOMAS train.....what a great weekend.
Clara had fun too!
I got back from Laura and Ken's today and miss my babies already. The trees sure leafed out while I was there and look at that emerald-green grass:
Unfortunately, Clara had another seizure yesterday and was taken to the hospital. She is fine today but still running a fever, even with fever reducers every 3 hours. I was glad I was there to stay with Charlie. We managed to have a nice day....he is the sweetest boy.....calls me "Ammy". He was pretty nervous when he saw this:
I am at the "Little House in the Big Woods" (Laura and Ken's) for a visit, watching spring arrive. Each day the trees are a little fuzzier and more fields have been plowed (huge farms here). Every day is fun with the little ones!
I found these wood violets on the edge of the driveway
Every night after dinner, Charlie gets the Swiffer out of the closet LOL
Clara loves her Crocs (just like I love mine) - I cannot get the photo "upright"!
I find myself hurrying to do things before the next CT scan. I want to fit everything in and do it NOW......spending time with Charlie and Clara, cooking some of the recipes I found when I was in such terrible condition, seeing friends, driving myself, and getting the beach house ready to move into.
Everything I am able to do is a gift. Last week we had lunch with our friends Jean and Tom who are in town from CA and today I had lunch with Grace who is here from France. Tomorrow I am going to the grocery store with a LIST for the first time since August. I am thrilled that I can do all these things.
Yesterday we went out for Easter lunch on the Eastern Shore. It was a cold, gray, gloomy day on the bay, but these babies light up my life.
(Charlie doing his pirate face)
I am not better, but am doing better. (There is a huge difference!)
I have more energy and stamina.....a fraction of what I had before, but better than a month ago, for sure. I spent the entire day today cleaning out and organizing drawers, baskets, bureaus, cabinets, etc. The most difficult thing is pacing myself. I find that if I work for 10-15 minutes then rest for 5-10 minutes, I can handle it.
Bob and I went to the beach house this past weekend, just for 24 hours. The repairs done from the storm damage are finished....days and days of repair, mostly drywall. I wish that there was something to SHOW for all the money that we spent! I got about half of my closet cleaned out - I have to give ALL my clothes to Goodwill because everything is 3 sizes too large. I really look like a clown in my clothes. Debbie and I are riding back down to the beach on Friday - she has some contractors coming over to her house - and I will get more done. We will just stay a few hours. I am hoping to stop at a couple of stores and buy some clothes.
Best of all, last week I saw my new oncologist and found out that my CT scan was CLEAR!!!
I read this last week: "The problem with cancer is not that it grows too fast, but that it dies too slowly."
One of the worst things about these past few months has been my inability to focus and do much reading. So it was with great delight that I finished 3 novels in the last ten days.
No, this is not Isaac on the cover, but the book is partially narrated by a cat. It is a serious book, thought-provoking, and one of the best books I have read lately.
Another hit. I can see why it was named Amazon's book of the month. Wonderfully written and although it is a sad topic, it was not hard to read. I hated turning every page because it meant I was closer to finishing the book.
Just a lovely book. Not as much food talk as I had expected, but a good story. Some great writing.
On Monday I went to my new oncologist, Dr.Misleh. He is the same age as Laura! and is a medical oncologist, not a gynecological oncologist. Gyn oncs seem to be mainly interested in surgery and I am not. It was a good visit..he spent almost an hour talking to Bob and I --- very unusual. He asked a lot of questions, unlike Dr. B who barely acknowledged my existence. We talked about the future and my hobbies (oh, yeah, Dr. B barely knew my name!) and what I felt about my situation. I was very sick that day and he thought I was probably nervous about the visit...he was correct. I had blood work at 4 PM and HE called me with the results at 6. I almost dropped the phone - I often wondered if Dr. B even looked at my results. Good news....except for magnesium, all my levels were normal.
I started physical therapy two weeks ago and am determined to get better. I go three times a week and the exercises are very simple ones. It is amazing how tired I am at the end. My favorite thing is the NuStep machine. All the other exercises do not involve machines. One big goal is to be able to drive myself there.
I am at Laura's now...arrived on Wednesday afternoon and will stay for a week. My mental health is 100% better! I love these babies beyond reason. Sometimes I get tears in my eyes just watching them! They have a visitor, a big old chubby Golden named Maddie. Charlie calls her "Maddog"...LOL. Last night at 6:15 I told Laura that she needed to put Clara to bed because I was so tired from watching her antics- she never stops! Oh, and last night Charlie used the Swiffer on the wood floors....nice straight lines. He is such a good boy. And so funny....when he finishes school, he leaves his classroom and goes to Laura's office and keeps her company! He sits on an ugly pink sofa and uses his iPad for an hour.
After 17 days in the hospital due to gastrointestinal bleeding, I came home on Saturday. The platelet count which caused the bleeding is almost back to normal. I am very nervous that this could happen again. I had no warning. I had some great nurses who were very helpful and informative. I met a wonderful oncologist and have decided to change to his practice. We will see him in 2 weeks.
With the extensve research that I have done on cancer, I never realized that I could go to a medical oncologist ---- that I did not need a gynecological oncologist! DUH
I appreciate the cards, visits, and encouragement. I sadly missed my babies - they were sick and could not visit.
I start outpatient physical therapy on Friday and hope I can get some strength back. I want my old life back.