Saturday, October 30, 2010

I guess I feel the need to write one last entry into Amy's blog.

Amy passed away Oct. 26, 2010 .
Her obituary can be seen at

Amy's service was touching and beautiful.
The day was a gorgeous autumn day.
The time with family and friends is something we will always remember.

Thank you to everyone who has followed her blog and supported us thoughout this journey.

Monday, October 25, 2010

This weekend went by quickly. Saturday Amy was still having pain in her left sinus area, so we contacted the nurse and she came over and upped the dosage the pain pump delivers. This seems to have worked and Amy is not having near as much pain as she was. The only problem with upping pain medicine is it makes Amy sleepier, but we will take her sleeping more over her having pain. We watched some football Saturday, and Greg and Amy played trivia games on sporcle Saturday night ( they do pretty good together - Amy gets the newer answers and Greg can answer most of the "oldies").

We have been amazed at the love and support shown to Amy. I hate to leave anyone out and in time I hope to thank everyone, but for now I do want to say a few Thank Yous :
Thank you Blair and Carol for the "happy " Bob Ross Paint Kit you sent, Amy was surprised and enjoyed receiving that -we hope to use it this week.
Thank you to our "only planned cousin in South Carolina" for the many wonderful care packages... nothing goes to waste in them :)
Thank you to Joleen, John, Teagan, Phyllis, Bucky, Wanda, Janice, Bonnie, James, Roberta, David, Gale, Jared, Webbs and Feazells.... everyone ...who worked, helped, ate, stopped by the Bean Supper held for Amy. Roberta has some pictures on her facebook page and it looks like everyone had plenty of good food and company. Wish we could have been there.
Thank you to everyone who's praying for Amy. We do feel strengthened by your love and encouraging words/thoughts sent our way.

love to all

Friday, October 22, 2010

Good Morning,

Amy has had a fairly good week. The main problem she is having now is pain/pressure in her left sinus and ear. The nurse is going to come by today to check on it and see what can be done to alleviate it. She is taking augmentin for any infection, but they may need to up her pain medication dosage to help with the pain she is experiencing.

Amy is very thankful for all the comments here and on her facebook page. The support, encouragement and love shown is amazing and helps boost spirits and comfort her. We feel so blessed to have such wonderful family and friends.

This week we have watched old movies, played games and Christmas shopped online.
Amy was able to get most of her Christmas shopping done. The FedEx, UPS and USPS guys will not like us very much over the next week with all the packages that will be coming. Amy's bed downstairs is right in front of the sliding glass doors and yesterday was so beautiful we opened the doors and let the autumn breeze come in . We also have pumpkins on the back deck, and I hope to get out this weekend and get some mums to add to the colors of the leaves changing. Isn't autumn a beautiful season!

We still might try our hand at painting next week. I will not paint a clown.. I cannot be the only one who finds clowns ( and the Burger King guy) really spooky :). Not sure what we will paint.. any suggestions?? (hey Blair, we may have to find some old footage of Bob Ross to inspire us :) )

Love and hugs to everyone,

Tuesday, October 19, 2010

Good morning,

Sunday was a long day. Sitting at the hospital waiting to get released seemed to take forever. So when we finally got out of the hospital around 2:30 it was so nice to get back home.

Amy loves having a bed downstairs so she does not "have" to go up the steps if she does not want to. The nurses, supervisors and even the delivery guys from Duke Hospice have all been extremely nice and caring. Amy is now hooked to a small pump (it is in a "fanny pack ") that delivers a constant dose of pain medication to her every hour, plus she can push a button and it delivers a "extra" dose if needed. This is really helping and she can give herself more if she is getting ready to eat, which helps with the mouth/throat pain.

Yesterday we were lazy. We watched TV and played games on the computer. We have become hooked on a website called Sporcle - it has hundreds of trivia quizzes in categories from literature, TV, movies, sports, etc... be warned if you try it, it can be addicting :) We had a good day and Amy is feeling pretty good. We have been going back and watching some of Amy's favorite movies as a child... "Return to Oz" (with a talking chicken, flying moose couch, some guy with a pumpkin head..I find rather disturbing :), Babes in Toyland, Seven Brides for Seven Brothers, ... and Christmas movies are on the agenda. I told Amy I might go buy canvases and we might even try our hand at painting (Michael is opting out of this one ).

We cannot say it enough..thank you. We are still amazed at the care, love and support being shown to Amy. It means more than we can express in words.
love to all

Sunday, October 17, 2010

Good morning.

Thank you, to everyone, for your prayers, love and support when it was needed so much.

Amy will be getting out of the hospital today (Sunday). After many prayers and much thought, Amy will be moving on to hospice care. Amy biggest complaint right now is her terrible "stuffy" nose.

Even with all that has been going on the last few days, it has been a good weekend.
Our visit with Mary Beth and Genie has been very nice. The four of us sat in the hospital room yesterday and talked , laughed and drove Amy a bit crazy with the three of us" hoovering" over her, but it was very special and Amy put up with us well.

Hope everyone is able to get out and enjoy the wonderful autumn weather. We love the cooler temperature.

love to all

Friday, October 15, 2010

Today started off bad.

As I was driving Amy to clinic this morning, she was telling me she did not feel right. Just as she was saying the words she began to have a seizure. Thankfully I was able to get off the main road on to a side road , stop the car and get around to her fairly quickly. The seizure probably did not last that long, but seemed like an eternity. After it was over, she was confused and looked up at me and ask what in the world I was doing? The last thing she remembered was me driving then all of a sudden I'm standing beside her on the passenger's side of the car. I am so thankful she does not remember any of it. We proceeded to the clinic, and I called them to report what had happened and as I pulled in front of the clinic several nurses and a doctor were there to help me. The staff at the ABMT Clinic is amazing and I have grown to love and respect them all. The staff checked Amy over and decided to admit her to the hospital. Amy has not had any more seizure activity and has rested well and feels okay. Its nice that they are giving her IV medications which keeps her pain under control. Michael brought her some of her favorite banana popsicles to the hospital, we watched a few Law and Order reruns and had a great visit with my sister Mary Beth (my other sister Genie comes tomorrow :). Thankfully the day ended better than it began.
*We would like to ask for prayers - there are some very tough decisions to be made.
Like Amy has said, we cannot thank you enough for all the thoughts, prayers, emails, cards, letters, phone calls, visits, support, ... over the 19 months.
Thank you,

Wednesday, October 13, 2010

Warning: not a good update

Apologies, apologies for not updating sooner. It's been a hard week and a half with good days and bad days. My mouth sores were seeming to get better last week then Friday they started getting worse. Another sore popped up in my throat yesterday but it has felt better today. They switched my antibiotics around , so that may have been the reason for the sores to get worse, so we've switched medications back and again upped my pain medications so hopefully it will get taken care of.

As I said last time the Revlimid didn't have an effect on my leukemia. However, going back on the Hydrea has brought my white count down again into the single digits. This is good but we do not know how long the Hydrea will continue to work.

We had a talk with Therese and Dr. Rizzieri and they really feel any more treatments would cause more harm than good to my quality of life. So we're focusing on keeping my energy level up with red blood cell transfusions, controlling pain, and praying that the Hydrea works for a good amount of time.

Right now mom and I are having fun watching movies and Law and Order reruns. My aunts (Mary Beth and Genie) are coming this weekend so that will be nice.

Today has been a good day and I'm sure tomorrow will be too! Thank you all for your support through the last year and half - I cannot express that enough.


Monday, October 4, 2010

Hi everyone! I'm happy to report that things are getting a lot better as far as my mouth sores/throat. I'm able to eat a lot more food but things still don't taste like they should (but as long as I can eat different things I'm not going to complain).

On the other hand the Revlimid did not work in lowering my white count. In fact, it shot up to 30! (normal is 3.2 - 9.8). So this must not be the drug for me. Dr. Rizzieri put me back on Hydrea hoping to get this count down again. Like I said in my last post there is a drug he wants to put me on which is similar to the STA-9090 (a protein inhibitor) that I was on at the beginning of this year. However, it will require a weeks stay in the hospital. This doesn't totally depress me because I know all the nurses and like the 9200 unit but a week away from my bed is not appealing. It also makes it harder on Michael and Mom when I'm in the hospital. (I'm a very spoiled in that I do not like hospital food and so mom or Michael bring me my meals plus I still don't like staying there by myself at night.)

My only other problem right now is just being incredibly weak. My legs have very little strength and I am having trouble with balance when I walk. Mom and Michael make me hold on to them whenever we walk anywhere.

Hope you all have a wonderful week,