The Verdict is In
We met with Dr. Porter yesterday afternoon and he explained Deb's prognosis. Unfortunately, it is not very good.
Deb is not in remission and about 20% of her cells are still leukemic. After two rounds of chemotherapy, this is not a good result. It is Dr. Porter's opinion and traditional chemotherapy will never get Debbie into remission. It may be helpful to keep the disease in check for a while, but it is a short term option. This outcome reminds me of the reading we did when we were awaiting the results of the chromosone analysis. When Deb's chromosone defect was identified, it said that it was "resistent to treatment." Amen to that!
Second, none of Debbie's siblings are a match. Pam is slightly better than a half match. Further, Dr. Porter said that Deb's DNA is unique -- something most of us already knew. However, of the over 5 million potential donors in the data base, only one is a potential match for Deb. When we told Dr. Porter that Deb was in the database, he concluded that the one potential match is most likely Deb herself!
Based upon what we have been told to date, there are no conventional options for us in the case of no remission with no matching donor, other than continued chemotherapy to hold the disease at bay.
Dr. Porter asked us to consider an "experimental" treatment called a haploidentical stem cell transplant, that is done at Jefferson. HUP does not do them. We are reading about the procedure and its consequences and we will meet with the people from Jeff next week. Presently, this does not look like something that we will undertake, but we will speak with them.
If we do nothing further, Dr. Porter said that Deb has between 3 - 18 months.
Deb sends her love to all.
posted by Joe @ 6:01 AM
33 Comments:
Debbie,
Just wanted to let you know that I'm thinking about you..always. Continuing my prayers for your recovery despite the discouraging news ( FOD's we'll need to step it up).
Love, Kim
Chizzie -
I love you. You are in my thoughts and prayers. Joe, Jess, Walid, Joey, Mike, Christian and Emma G and FOD's you are included.
Today's Daily Word seemed made for us today.
Dear one, my love for you is unending. You are always in my prayers and held in my gentle and kind thoughts. Whatever our separation in miles may be, we share an eternal connection of heart and spirit.
I hold you close in my heart, affirming that you are receiving perfect, loving care. My prayer is that you receive the best of attention and know that God's healing presence is active within you.
God guides your caregivers in ways of wisdom, alertness and willingness. Attuned to your desires and needs, they are understanding, available and supportive. Their thoughtful and thorough care fills your days and nights with peace and reassurance.
Fully content in God's presence, you rest in comfort and peace.
"But we were gentle among you, like a nurse tenderly caring for her own children."-1 Thessalonians 2:7
Hey since I am better then a half match I could get rid of the lukemia and the nupogen could raise your wbc then you would be better.
I LOVE YOU,
Pam
Debbie . . .you know how we all feel about you, we love you. We'll all continue the prayers and hope for miracles. You've always been everyone's strength in bad times, I only hope that we can give a little back to you when you need it. Please, please, explore other options in different places. I bet Jessie is already doing that for you.
I'm thinking about you constantly, call if you need anything at all.
Love,
Cathy
Deb, arent there times when you just want to scream out"the hell with what the doctors say!" biopsy, smiopsy!so sorry you didn't get the results we were all hoping and praying for...don't like time frames either..i'll keep sending all my positive vibes, polyana way of thinking, and hope that the meds will keep it at bay for a long time!! Keep up your faith, take the meds..and we will all just take this one day at a time for you!!lots of love to all of you,,,mdf
Debbie,
We all love you so very much that if our love alone could cure you, you would have been well long ago. Everyone is here for you praying for you night and day.
Love, Kay and Rob Gould
You will be in our constant thoughts and prayers. God's more powereful than chemo anyway!
Love- Kathy, Marc, and Taylor
Dear Debbie,
We send you our love, thoughts, and prayers. We will just have to increase our prayers, and "storm heaven" until God answers our prayers. Fortunately, God is not bound by any doctor's verdict.
Love, Mary Ann & Paul
Hi Deb,
I know this isn't the work we all wanted to hear, but there are other options that we will all look into and share with you. I still believe in miracles, and I don't know of anyone who deserves one more then you. My thoughts and prayers are with you all.
Love,
Dick
Debby & Joe,
We are stunned by the posting as is everyone else, but we think that we must intensify our prayers for your health. As difficult as it may seem at this time, we'd suggest that you continue hoping with the rest of us for the miracle of healing. You continue to be in our thoughts & prayers. Love mom and dad
Debbie, we all love you and are available for you 24/7
Luv
Kevin
Dear Deb and Joe
I've been thinking about you you are in my prayers. Love you all.BIG HUGS
Your Aunt Angie
Debbie:
I am on the phone with Rosemarie right now. Easton is rooting for you! Missouri is busting at the seams with the need to give you a big hug! Mere, Colin and Bee send you lots of X's & O's. Dave and I send our love and prayers. We will be waiting to hear more about the haploidentical transplant options. WE LOVE YOU DEB!
Cousin Eileen
Debbie,
Oh geez, I just got off the phone with Reen and she told me that she gave you that lasagna that I made 2 months ago! She also said that YOU plan to eat it for dinner tonight. Ohhhhh noooooo, I thought. To go further on, that was the first lasagna that I have ever made and I am sure it is not the best- quite possibly the WORST. Being the polite person that you are, I am also sure that you will tell Reen that it was alright to eat. You can lie, Debbie! I am so embarrassed...
I hope your post-lasagna McDonalds afterwards did the trick, jk.
On a more serious note, I am very sorry to hear the news on your results. I feel horrible for what you and your family are going through. BUT, you are one of the MOST FABULOUS females that I know! You are the only person I know that is deserving of a FULL turn-around miracle! And with all of the current support that you have from family and friends the glass will start looking half full. (Reen said that you look amazing, and I'm so glad you feel okay, also)
You are NEVER far from my thoughts and/or prayers, Debbie. I love you!!!!
xoxo Meg Noon
Debbie,
I agree with Mom and Dad--we are all just stunned by the news and you so don't deserve it. But, I believe in miracles and if prayers are what will bring one, I'll be praying for you constantly. You are always in our thoughts and prayers and if I can do anything at all, just say the word.
Love,
Jeanne
Debbie: I know my mom has already said that we send you X and O's but I wanted to tell you personally how much i am praying for you. My mom told me about this blog as i was going to a friends house. On my way home i said a prayer, I told God that I have asked a lot of him before but if there was one thing in the whole world i would want him to do was to help you because you are the sweetest and nicest people in the world. you are always doing things for other people. I will pray extra hard before I go to bed tonight!...I SEND YOU MY BEST WISHES....GET BETTER LUV MEREDITH
Debbie,I love you and am floored at this news. I as you know , continue to pray for you and your beautiful family..as do we all ..fod's...a unique and wonderful group of loving individuals ,who continually amaze me with ther wit, love, and uncanny ability to always say just the right thing...Mo you slay me!!Please Debbie ,if I can do anything to help you...my prayers and hopes continue ..:(Bev
Dear Deb and Joe,
Although your news is discouraging, there is always room for HOPE. Let Jessie's research give you some Positive options. We love you Deb and you are unique and special and so you just have to take one day at a time.
Love, Lorraine and Bob
Debbie,
I hope you fell better soon. I am praying for you everyday to make sure you get better. I am fine, I just had my brithday which makes me 13. Tell everyone I said hi.
Love,
Brendan
Debbie,We hope u get better we need another beach bonding i love u and i hope bet well soon
I have read, and reread Joe's blog news and somehow it kind of reminds me of the "weight chart"..if 20% of your cells are leukemic, then doesn't that mean 80% aren't? Will/can the meds keep those 20% from getting stronger and taking over?When the weight chart says a woman 5"4 weighs 170 and they claim she is obese.. give me a break.. they have to look at bone structure, muscle, length and thickness of hair!! So my point being.. the rest of your body seems to be pretty strong deb.. can it withstand the barrage of leukemic cells threatening the 80% of good cells with meds??Am i just being ditsy about this??Lets pray that they do stand up to them, until you find that "next step " that will help... Day by Day Deb.. we love you also.. mdf
Deb,
I'm sorry to hear things arent going as well as wed hoped. Cant you go to a center?? I know Penn is good but there may be other big centersin the country.I have heard Seattle is a big bone marrow center and there may be others around.....
We are thinking about you in our house....and our prayers are with you
Rich Friedman
Deb:
Compulsive parent that I am had to proof the kids notes to you. I think Colin meant for you to "get well" not "bet well". :)
Thinking of you constantly! Eileen
This is a test...
Man - this ticks me off like you wouldn't believe. I just wrote this big long post, hit preview and then it went Poof! I really do hate it when that happens. Let's try this again.
Debbie. It was terrific talking to you today. Glad to hear that you were chillin with Mr. Joe, Joey, Miss Alli, Mikey and Derek.
It was such a beautiful day - hope you were able to get out and enjoy it. Man, there's nothing like nature to heal your soul IMHO.
It's good to hear the cough is better, the appetite is coming back and you are feeling perkier. As mdf would say, "baby steps" and we are with you every baby step of the way, Baby.
We were so busy babbling we forgot to talk figure skating so I don't know if you heard that Michelle Kwan made the Olympic team. Just in case you didn't, here's this from our local fishwrap:
"Kwan sealed the spot...She performed both her long and short programs in less than 12 minutes, a quick practice session, and did every one of her jumps except the triple loop."
I especially liked this:
"Kwan curtsied to the committee when the sessions was over..."
How could you not love this girl? (Skating freak note - she knows she needs to nail the triple and is working on it.)
(Sorry Mo, I don't do tennis but I DO like to bitch about twerps from time to time! And I love, love, love Elizabeth George.)
FOD's - thinking that our new battle cry should be "PECKERS UP"
(hat tip to Mo for that one.)
And what about this? The Green Bay Packers have their "Cheese Heads". Jimmy Buffett has his "Parrot Heads." Should Debbie have her "PECKER HEADS"????
Love you honey. And all you Pecker heads too...
K
Dear Aunt Debbie, Uncle Joe, Jessie, Joey and Mikey,
I'm so sorry to hear this recent news. I've been checking the blog almost daily since you came home and I thought for sure that things were looking up when no further posts were made. I'll have to look up the suggested treatment as I've never heard of it, but there HAS to be something we can do. Can't we still get tested? Some of my friends at work asked if you would get a bone marrow transplant, so I'm not sure if this is an option available or not. You've been in my prayers daily and will remain there until you overcome this.
I hope you are enjoying being home and that the cough and rash are gone. I hope to be able to see you soon if you are accepting visitors.
Love,
Lisa
I think I get it...bone marrow transplants and stem cell transplants are the same thing. Anyway, I found this website and thought some might want to check it out.
www.haplo.org
Hi Deb! I had a real inspiration during Communion today and wanted to pass it along to you for whatever it's worth. I remembered that your parish, Corpus Christi, has a novena to St. Peregrine on the first and third Wednesday of every month. There have been some physical, emotional and spiritual healings there. I've covered them for the paper. The people there are great - a real strong support group. Also, on April 26 at 7:30, Fr. Pio (son of a couple in your parish who knew Padre Pio personally) will be concelebrating a healing Mass at Corpus Christi. Fr. Pio received his first communion from Padre Pio.
I'd be happy to go with you to any of these functions, Deb. You just call and I'll come get you! I'm praying for you daily. Love you much. Susie
Hi Deb, hope you had a good sunday!Is it still nice out there? We are starting to get blossoms on the trees here..makes our backyard a little more attractive than the wet mud that there now..
Not alot going on.. went to a 1 yo bday party today.. Mark had baseball conditioning yestersday.. and Patrick and 8 of his friends had fun last night.. first patrick's car(actually tims) got saran wrapped.. then there was a group of girls coming over at 11:30 to tp our house.. the boys heard about this, so they all hid , and when the girls showed up and started throwing the tp in the trees, Patrick set the sprinklers on!Told you,, "lets challenge the menopausal woman with teenagers!"but they all had fun
Are things still on for tuesday? I will hope and pray they have the answer you are all looking for! Tell Joe hi for me,, and Mo...I don't know why you got so upset about the tennis player leaving the match due to stomach problems.. come on.. have you ever tried to do physical activity with IBS? and in tennis whites!!!mdf
Debbie, Joe, and family,
My love to you all. As all have said already, my prayers are getting stepped up another notch. I have always believed in miracles.
Love, Jean
Deb:
We need to talk. Since you left the hosptial there hasn't been a update on how you are feeling. Should I call the house or your cell? I hate to bother you if you are resting.
Mere said she caught Joe online but just thinking about you while talking to Joe got her all upset.
When would be a good time for Aunt Angie and I to get to talk to you. What do you prefer?
Jessie is getting really close. She has to be less than 8 weeks out. I bet she is anxious. Our neighbor is having her 8th this week! Yikes. Can you imagine? What kind of shape would you be in after getting all 8 through the teen years. I would be dying my roots every 2 weeks instead of 4.
Dave is home from his meeting and really wants me to make a trip east before we head for Honduras in March....I as thinking I could stay in Easton and go back and forth. Much like going into St. Louis from here. Hate to be a nagging cousin but I need a hug too! Let me know what you prefer on contacting you and how you are feeling.
We are awaiting news on the HSCT...
We love you Deb and Joe...Eileen and Family...:)
Dear Deb and Family:
Just checked in on the blog and read your latest news--so sorry to hear that it was not what you were hoping.
Will continue to keep you and your family in my prayers. Also, prayers for the physicians and research teams that will provide a treatment for you.
Carolyn Stuart
Hey Cousin:
Need to hear your voice. I'll be calling soon. Love Leenie
Dear Debbie and Joe,
We have been praying and our prayer chain at church continues to pray and it sounds like you got your miracle! We will continue to pray for all the healing the universe can muster as we watch and listen.
Hope you do see the Franklin Exhibit, it is great and I lit it!
Pictures are great, you look fabulous Debbie, that doctor was right!
All our love,
Sandra, John, Briana and Meagan
Post a Comment
<< Home