Breathing In Good Biopsy Results...

After so many months of fear, doubt, hope being held onto with every bit of strength I had, my Dad and I got to hear the final biopsy report from 4/4/11 showed my leukemia blasts went from 15% prior to the first Donor Lymphocyte Infusion to 3% after the first DLI!!! My neutrophils went from .26 to .4, one small step in the right direction, and hopefully we'll see some some rising blood counts in a few weeks. So, still waiting, but with so much more hope than ever!

My next biopsy will be in 4 weeks, very exciting! I'm in the middle of a mental adjustment I wasn't expecting to have the pleasure of experiencing.

Back to last week, I had a great time being with Sherry(sis-in-law), walking, talking, shopping, cooking & all full of nurturing for me as well Daniel. There was also time off for Jaime to spend the day in Miami on business, while Sherry covered any IV's needed during that time.

Friday, just as my Donor Lymphocyte Infusion (DLI) ended, Susan appeared. I had been watched for an hour before they released me to make sure there were no immediate side effects, then off we went down where our driver, Jaime, was waiting to take us home to SRQ. Had a yummy dinner and Upwords was played and as per Aunt Natalie, Upwords/Upwards have been closely related! Saturday morning was a challange with my leg pain intensity just not wanting to cooperate even with the drugs, so at one point I just said "%$#@@$% it, let's go to the beach. We grabbed some supplies and off we went. Walked a bit in lots of pain, so back to our chairs where Susan faced her chair toward me, I put my feet up and slowly the pain went away and I was in heaven with an unbelievable breeze, yellow warning flags flying for swimmers and surfers, and it was just more than anyone could have expected for 11 in the morning! What great beach and sister time all in one! Susan did all kinds of cooking in the afternoon. For us, delicious yellow tail snapper coated in pecan meal and a veggie lasagna and for the carnivores, a meatloaf with veggies, then topping it off with chocolate covered special dessert to take to our Passover dinner.

Skipping ahead to Sunday morning, my donor was in the mood for a power walk, so Susan and I did a 4 mile walk in the beautiful morning air! A quick little shopping trip to Ellenton in the afternoon, and back in time for a most wonderful Passover dinner at Joyce and Dads's. We couldn't have have had a more perfect ending to Susan's trip! Thank you, Joyce, for your warmth, love and good cooking!

I am now awaiting the arrival of my cousin David from Seattle, who won't get to see the space shuttle launch as he planned, but I stayed in his plans. So yeah!! I'm getting ready to spend the next 24 hours laughing. More good medicine!

Thank you all who have been brave enough to continue calling and writing even during all my crabby days and hours. I am so happy to finally be able to give you all some good news!

Love to you all!

Carol

Approaching My Second Lymphocyte Infusion

Hi Everyone,

These have been a very trying couple of weeks due to the waiting and balancing pain in my legs, medication, weekly transfusions of platelets, and red cells. I feel pretty good when the pain is gone and I can, even for a short time, forget what's really going on.

Good news... yesterday while at Moffitt, my doctor visited us while I was having yet another transfusion, and said that although she only had preliminary results from the biopsy, still showing about 15% leukemia blasts, given that my GVHD has been kept to a minimum and and I've been able to stay fairly fever free, just low grade at times, she has scheduled me for this Friday for my next donor lymphocyte infusion. I'm ready. It's getting old, this statis quo. Of course I'm looking forward to some, even just a little positive results. The first one was positive in that I tolerated it well.

In the meantime, my April fun has already begun! Last Sunday while Aunt Brenda & Uncle Jerry were visiting at Dad & Joyce's, Frankie & Sandy made the 3+ hour drive from Boca so there was a small family reunion. So sweet for all of us. As I write, I am waiting for Sherry, my sis-in-law to knock on the door and spend the next three days doing everything we can. Friday, when we have our appointment at Moffitt, we will be picking up my sis, Susan, for a short but sweet visit til Sunday, then Cousin David, from Seattle will come for a 24 hour visit. He was supposed to be coming to see the shuttle launch, but, so much for plans.

I have been walking almost every day with my dear ole Dad and he has come up to my speed and even gone an extra mile without too much complaint! He is also perfectly accomdating when I need to be slow. It has been very good for both of us in many many ways and I am grateful that they are close enough that we can just pop out our doors at a moment's notice.

This past Sunday evening we met Donna & Joe at Turtle Beach for a most beautiful Sunset and even a bite to eat at the Thai Restaurant since it was late and no crowds to worry about. So great to finally see Joe and Donna after all their weeks of business travel!

Thank you to all of you who have called and visited, it's so wonderful for me just to feel your hugs and know you're still there supporting me. It has been a long long road and is still in motion. I so hope to be able to share good news with everyone very soon.

And one more little upcomimg visit, Alexia, Trevor & Bella will be arriving on Thursday, April 21st for spring break, which I am so grateful to be present for. Can't Wait, but, one day at a time.

Love to All,
Carol