August 21st Update
Dear Fods,
It seems like I am always apologizing for not posting and I know that you all wonder how I am doing in between post, but unfortunately it has been a rough six weeks.
Round #3 of Vidaza left me extremely fatigued and again blood and platelet dependent. Meaning that I am at HUP every Tuesday and Friday for blood products. Somewhere in this time period, the back and foot pain came back with a vengence making it very difficult for me to walk. I had Round # 4 of Vidaza and ended up back in HUP last week with fevers and excruciating pain. Actually, I am running a fever every day, but the HUP fevers were north of 101. But luckily, no infections. It just means that the leukemia is out of control again.
Dr. Porter is away on a 6 month sabbatical doing research on stem cell transplants so I got a new doctor, Dr. Allison Loren. She is very compassionate and kind. I am sitting here at HUP getting 2 units of blood and 2 units of platelets with a low RBC and a high WBC, another indication that the leukemia is all "revved" up as they say at HUP. Heather has kept in contact with Dr. Porter and Dr. Loren and they think the next step is to try another clinical trial. I will see them on 8/31 and we will see what to do next, so long as things do not get too out of control.
I was able to spend the month of July, except for the week of chemo, at the shore with Jessie and the kids, although my beach time was pretty limited. I was able to color and play games with the kids at home in the AM and Jessie would take the kids to the beach in the PM so I could take a nap. Christian and Emma both boogie board and Christian is fearless in the water. I feel so blessed to have had this time with the kids, even though I am not very mobile. Joe is able to get me to the beach, but it is quite a chore. The 5 minute walk to the beach now takes 20 minutes, but the first look at the ocean once you pass the dunes still takes my breath away, even after all these years at the beach.
I think of you all often and hope that your summer is going well. Thank you for the cards I still receive every day and thanks for keeping in touch.
I love you all.
Debbie
posted by Joe @ 1:16 PM
16 Comments:
Debbie, sorry to hear that you are in pain. Sounds like you had a great time with the kids at the shore, there is no better medicine than the pure love of the grandkids!!! You stay strong. You continue to amaze me .... you never give up... you keep motoring along, showing your strength, your faith, your zest for life. You are my hero, Debbie, you give us all something to look up to, something to have faith in, something to admire. I hope that the docs have a clinical trial that will give you relief from pain. If I can do anything to help in any way, you just say the word. I love you!
Patty
Hi, Debbie! So happy you had time with the kids - you are a wonderful grandmother, just like you are a wonderful mother! I remember what a wonderful view and beach you have - I so wish I could have been there with you again. You gave me wonderful days there with you - your generosity was so appreciated. Another school year started at Carmel High School and it was my second summer to work year-round. But it was fine and such a fast-past job in the athletic department, that my days fly by (not really a great thing!). Jen and Thomas are on a Mediterranean Cruise and I think they may try to start trying to give me a grandchild soon! Shelly and Matt are so busy - crazy number of hours every week - she is in her last year of residency and will be finding a job for next year. Katy has one more year of school in Chicago and then an intern year and she will have her doctorate in psychology. I have been blessed with wonderful children and wonderful friends! And, I miss you so much and love you! Cheryl (Crone)
Hi Debbie,
Once again you seem to amaze me. I looked for you on the beach but I was rarely there. A total of 7 times this summer. I spent the rest of the time on the boat or staying out of the rain.Sorry to read you are having a tough time again. Jessie and the kids are lucky you were able to spend so much time with them this summer.
We are home today. The small craft advisory freed us up from the boat and the company. I'm making baked ziti for ethans third birthday. Tomorrow is a bridal shower for AJ's fiance' at her sisters in West Chester. I'm getting ready for the fall picture season which starts on Weds. I'm also crossing loads off my wedding "todos" list. The rain couldn't have come at a better time.
Take care of yourself. I hope all of your pain goes away and you can make the walk to the beach a little easier.
Oh Debbie, I thought since there were no post that you were too busy at the shore with your grandkids and having a good summer. I am so sorry you are in so much pain. I hope the pain subsides and you are feeling a little better to enjoy more time at the shore with the kids. You are a trooper - keep it up. Love shelly
Debbie,
I'm sorry I haven't written in a while. I've been busy training for my new job as Meal Coach for Wegmans! I'm the one you will see in the produce department behind the meal station making the menu item of the week. I get to wear a chef's coat too!
I'm in my third week and most of my training has been in the Harrisburg store. I'm not use to doing anything besides getting up to go potty at 4:30 a.m. then back to bed. But, I am quickly getting used to staying up and getting ready to leave by 6. Boy what a culture shock this has been.
But, I love the job. Our store (Collegeville) opens on Oct. 11. Until then, it's long hours but I am having fun meeting new people and learning new things.
I think of you often and pray that you are ok.
Sending big hugs,
Boni
Hi Debbie! Thanks so much for taking the time to update us! So sorry to hear that the AML is raging again & that you are going through such a rough time. Dr. Loren is really a great doctor & very caring person, so you are in good hands there! So happy to hear that you got to spend some good quality time at the beach w/the grandkids this summer! Hang in there....as always, we're all thiking of you! You are an AMAZING woman Debbie:-)
Love,
Bridget
Dear Deb,
Sorry to hear you are having a tough time. As everyone has said previously, you are amazing. I have not had much of a summer, been working nearly 7 days a week for the past few months with a break here and there. Just been crazy. The spring was tied up with my brother David and his broken hip. The fall I am hoping to ease back into a normal zone.
I have been to cape may once this year over the 4th. I am hoping to make it down in October.
Keeping you in my heart and my prayers everyday. Take care.
love, hugs, and prayers, jean
YOu and Joe made Mo and her mom and Bob dinner!! Don't know how you do it with all going on. .but i could tell she was very thankful for it!!
.. I know you hurt.. and im so sorry about it.. and wish i could help you. only thing i can do is share things with you to take your nind off it for a minute...
Have been working for the last 2 weeks.. cant believe how early school is starting now. earlier next year im told..Mark is a senior and loving it..Patrick will be starting his 3rd year.. i heard that is how you say it. you dont say jr year cause they may not have all the credits.. anyways..3 year in college.. stayed down there and is still working as a chinese delivery boy.. ha
The class i work in is pretty busy this year,, only 7 kids so far.. but combine language skills, autism, bipolar, behavior and spanish speaking..and its busy.. thought i had everything under control today. .kids working on chicka chicka boom boom picture, when one boy is missing was in the bathroom.. turns out was running out of the bathroom to get rocks to fill the urinal up with!! ha. unfortunately.. a pretty typical day for me..
debbie. my prayers will continue. you've got some inner strengh!! keep it going.. love.. mdf
Thanks for the post... we do wonder about you all in between them. We were at the beach last week (Hilton Head), and it is an amazing sight! Not so much boogie boarding for us once we discovered the families of jelly fish that were sharing our waters with us. Taylor started Kindergarten today. You're in our prayers, stay strong!
Deb,
Thinking about you each and every morning when I start my day! Of course by the end of the day I am cooking and cleaning . . . at my age . . . shouldn't I be enjoying some sort of retirement by now. I called your house today just to let you know I love you. This summer was nothing like I expected - the place is like a revolving door and there are boxes everywhere. While you were at the beach enjoying your family (deservedly) I was scrambling for places to put all the stuff that the kids brought home. Sarah just moved to Delaware for graduate school and David is off to NYC in a week. And we are moving him . . . at my age!
But I miss you and hope that we can get together soon. Call me any time - day or night - I'd love to hear your voice. Let me know what I can do - I am available to drive you down to HUP if you need a ride.
I love you,
Susan
Debbie, just checking in to say hello. Hope you are enjoying the shore. Brian and I had a great visit with John & Sandra in Boston on Sunday and Monday. We also got to spend time with Brian's son Michael and my Aunt Laura and cousins Christina, Maria and Antonietta. A whirlwind weekend to say the least. Still very busy at the store, so no complaints there. Janet and the boys are doing well, they just had a great day at Hershey Park. Well gotta run, just wanted to let you know I was thinking of you. Love,
Patty
Debbie,
You look great even though you may not feel like it! And might I add... those chocolate cookies were SOOO good. I couldn't keep my hands off of them at Reen's. There goes my post pregnancy diet. Have fun at the shore with Jessie and the kids- get some Mack pizza for us!
XOXO MEG
Debbie, just checking in to say hello and see how you are doing. You are in my prayers constantly.... love, Patty
Debbie, just wanted to say hello and see how you were doing? Love you,
Patty
Hi Debbie,
Finally have a chance to write. Sorry to hear you're having a tough time again, I see that there is no new post, I hope that is a good thing. We're having another baby, Jeff and Missy are expecting a boy in Jan. Matt and his girlfriend are engaged and are planning a Nov. 2010 wedding. Rose is in her 5th year teaching and is still single.
Hope you are doing better, you are so amazing and such an inspiration to all.
God Bless
Pam K
Ms. Debbie,
Thinking of you today and hoping you are enjoying the weather. The leaves are falling and it's getting darker alittler earlier... is it really almost October ?!? Maggie is getting so big and Matthew is running around everywhere! I need a dog collar and rope for that kid! Ha. Hope you are well enough for your big Nurses Weekend up at Lee's!!! Tell all the girls we said hi and don't be too scandelous... we know how you girls like to party :0 !!!
<3 MEG
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