Wednesday, July 28, 2010

Hi Everyone - again I have been inattentive in posting an update and I apologize. Over the last week I've had good days and not so good days - mouth sores and a cough have been the downside. However, these seem to be clearing up. For a while I was eating fruity pebbles, the broth from soup, and of course banana popsicles because of the pain but I have gotten to experience a little bit of real food the last two days - it's been wonderful!

I even got "out" a few times this week - once to a get together at Michael's professor's house and then last night we went to see the movie Inception - way over my head!!! That's all I have to say about that. Going out is kind of bittersweet. It is enjoyable but makes me miss my "normal" life.

Okay, medically we met with Dr. Rizzieri today and his PA Therese and they have decided to start me on a low dose of cytarabine (a chemo) on Friday. I will get this low dose every Monday, Wednesday, and Friday (outpatient). They are also applying for me to get another drug to take in addition to the cytarabine. I had become a little frustrated with them because I think their goal was prolonging my life when I still want to save my life. I let them know today that I will go through whatever, take chances, etc. because my goal is still remission. Also on a positive note, my white blood cell count continues to be controlled by the Hydrea.

I have a long road ahead and can't thank you enough for your support, especially in prayer,

Wednesday, July 21, 2010

Good evening,

Good : Amy's balance is almost back to normal, the mental confusion has cleared up
and she is feeling better than she was a few weeks ago.
Bad: Amy still has a bad cough, a sore throat/mouth and because of the soreness she
is having difficulty finding things she can eat that are also filling. She really wants
"normal" food, but they are too hard for her to eat. We are trying everything from Baby Foods to Ensure Milkshakes. Right now her favorite food is banana Popsicles.

The clinic is trying to give Amy two days off between appointments which is nice. She had an appointment Monday and we go back tomorrow (Thursday). We are so grateful for all those who have made their way south ( or north for the "planned one" from SC :)....) for a visit. Thank you to everyone who has sent cards - Amy had a huge stack of cards in the mail yesterday. Thank you to all the people who are praying for Amy.
Love and hugs to all...

Tuesday, July 13, 2010

Hi Everyone! I apologize for not updating sooner. Simple tasks seemed to be so hard to do - like mom said tying my shoes or anything requiring fine motor skills were and still are difficult. Even typing is somewhat of a challenge. I am still very weak and have to have help walking anywhere due to my lack of balance (my mother is very diligent about making sure someone is with me everywhere I walk). I can't say that my mouth sores are better, but we're managing my foods fairly well. I'm at one of those points where you eat to live instead of "living to eat".

In good news, we did get the weekend off and had some great company. My White Blood Cell count was 5.7 (down from 8.3ish) so at least we're still going in the right direction even without the oral chemotherapy pills.

Keep the love and keep praying, that is all I can ask for at this point, Amy

Tuesday, July 6, 2010

Good evening,

Just a brief note to let everyone know that Amy is not doing well at this time.
She is experiencing a lot of confusion, balance problems, lung issues, a bad cough, and fevers off/on. The clinic did draw blood to culture and one came back positive for infection, but the staff feels the leukemia is creating most of her problems. We will continue to go to the clinic daily and she will get IV antibiotics and blood products.

Thank you for your continued support, prayers, love and kindness.

Saturday, July 3, 2010

Hi everyone, hope you all had a good week. Unfortunately I cannot say we had the best of weeks. My mouth sores worsened and worsened to the point where swallowing was painful. I have also had a temperature since about Wednesday but they hope these two things are related. They took me off the oral chemo for now and will decide Monday where to go from here. Dr. Rizzieri said he knew of a few chemos that would not affect my mouth.

Some good news is that the chemo pill and and the Hydrea were keeping my white count down. Yesterday my white blood count with 8.7, which is very good. Pray that it doesn't take a sharp turn around though!

In non-health related news I actually have worn my wigs ! It helps that it has been cooler this week. This is a vanity thing having a wig out it public makes me me feel more normal.

Hope you all have a fun and safe 4th of July,