Special Guest Posting #8
Hello dear friends,
Sorry I haven't blogged to fill you in on Thursday's visit to Jefferson Hospital. Joe and I met with a wonderful doctor, Matthew Carabasi. He was very kind and warm but of course had more bad news. Once again my genetics are to blame. Apparently I have a "suppressor" gene that will make the donor cells from my sister Pam partially ineffective. This ups the ante for an already extremely high risk procedure. The doctor said in a normal haploidentical stem cell transplant (SCT), survival rate is only 1 in 4. In my case, with such poor genetic factors, he was unable to predict how my case would go - other than to say it is extremely risky, but my only chance for survival. We left the office on Thursday with a scheduled admission directly to ICU for this Tuesday to begin the chemotherapy/irradiation process to prepare for the SCT. After further discussion and research, we decided to put off treatment for a week to see if there are other options available. As the doctors continue to remind us, time is of the essence and we can't delay much longer. Not to worry you all, but some of the symptoms I had prior to treatment in December are starting to return. I see Dr. Porter again on Tuesday. We have sent my chart to doctors at Johns Hopkins, Anderson, and Dana Farber and are hopeful they may provide us with alternatives.
In the mean time I have had a glorious weekend with Jessie, Walid, and Christian. This precious grandbaby lightens my soul and spirit. He's getting to be such a big boy. Speaking of big, Jessie looks wonderful but is HUGE! Another big baby on the way, just six more weeks to go. She looks much healthier this pregnancy but has that end of pregnancy waddle thing going.
Thank you everyone for the wonderful food. Bev, your paella is to die for. Mr. Smith, that chili of yours really is spectacular! Cathy Moore tells me she tries to make it for the shop and it's never quite the same. We enjoyed it immensly during the Super Bowl.
I don't know how to thank all of you for all of your continued support. Cards continue to arrive every day with the most heartfelt words of love and concern. I know I am loved and feel so blessed to have all of you. Words just don't seem adequate. Again, I'm sorry I haven't written until now, but for the first time I am really frightened and don't know how to move forward. I too now am hoping for a miracle. I will write again once we make a decision but I'm assuming more chemotherapy is around the corner. I hate the thought of returning to the hospital but know it's just a matter of time. Every minute with my family is a blessing and every conversation with friends is cherished. Thank you again a million times over.
Love,
Debbie
posted by Jessie @ 9:19 PM
53 Comments:
Joe and Deb,
I'm so glad you had such a wonderful weekend with Jessie, Walid and Christian. And, I know just how calming and therapeutic grandchildren are. When I'm with Alex, I can block out everything else and just thoroughly enjoy being with him. I was with him tonight, and he had to be the Mom and I had to be the kitty cat!!!I'm so glad everything is going so good for Jess and baby Emma.
I'm so sorry about the news from Jefferson. I know it's not what you wanted to hear, but I think we have to keep praying for a miracle and we'll get one for you. You are both constantly in our thoughts and prayers and if we can do anything at all, please give me a call.
Love you both,
Jeanne
Debbie:
As you know I have been waiting for this blog for a few days now. Rereading previous blogs to try and remember when your appt. was with Jefferson. I had to remind Mom today that Jessie, Walid and Christian were there for the weekend and we probably wouldn't hear from you till after they left.
Go ahead and admit that you are frightened. I am frightened too! I just can believe that the "glue" of all the cousins is being put to such a test. Mom and I hit church together today and every homily and reading now reminds me of you. Today another miracle was read and I can only pray and hope that you too will be that 25% of success that the SCT can offer you.
We continue to keep you in our thoughts daily and send you our blessing when we sit down for a family dinner. Keep your chin up! I know you can beat this!
Pennsylvania pulls another victory out today. That's when I remind folks that I am really from Penn.
Hugs and love to all, Eileen and family
Debbie: Just thought that I would put up another comment for you!..I know that everyone says that you are in their prayers and i will say it again. You are always in my prayers. Every night when we sit down to family dinner (which is about once a week between my work and brendans basketball and of course THE AUCTION)you are the first person that we all pray for. Every day my mom would go to check to see if there was a new blog. I really hope that these hospitals will have a good hope at helping you!.....I know that you can get through this because you are one of the toughest people I know. I remember when we were at the beach and REALLY early in the morning you would go for your walk while Joe ran.. I know that you were on vacation and you didn't want to do that but you got up and went...I wish i was more like you!...Well I better be getting to bed LUV YOU THIS________________________________ MUCH Meredith
Debbie, I AM PRAYING EVERY DAY FOR U I HOPE U GET BETTER AND WILL CONTINUE TO HOPE FOR THE BEST LOVE U UR FAVORITE 2ND COUSIN COLIN
Dear Debbie and Joe
I still can't believe this. You are going to pull through this. If there is anything I can do for you I will. I'll give you any part of my body if it would help you I know you are laughing. I know it's 79 years old, now I'm laughing.
You are in my prayers I love you all. BIG HUGS
Your Aunt Angie
Dear debbie,
I am always thinking about you and keeping you in my prayers. I hope your treatment goes well and you turn out to be fine, but you neer know. I am fine. School is going well. about half way through the school year. Sports- our baskettball team is doin pretty well this year. We only have 1 more game left but thats ok. Im looking forward to baseball this year.I havent played in about 7 years so im excited about that.Well thats about all u need to know about me. I hope you feel better. GET WELL SOON!!!
Love,
Bee
Busted! You probably thought those family dinners were every night. Well we hope for three a week. Mere may be right...right now but it's got to be more than once a week that we say grace together.
Take care...Eileen
Mrs Teklits,
Im glad your weekend with your cutiepie went well. Just wanted to stop by the site and send my love.. Missing you and saying lots of prayers!!!!!
Love Always,
Alli <3
Hey Deb,
Glad to hear that you had such a wonderful weekend with your family. It sounds like C. was great medicine.
We all will keep the prayers going and you keep doing what your doing. You are an inspiration to us all.
Love, hugs, and kisses.
Jean
Debbie,
I'm so glad you got to see Jessie and have a great weekend. 6 more weeks and there will be an amazing new addition to your already amazing family!!! I am so excited to see what the girl version of Christian is... beautiful I would imagine. Every time i think about you guys I can't help but be truely inspired. Always in my prayers... Meg Noon
Debby & Joe,
We were delighted to see a new posting in spite of the disappointing news from the medical "experts". We continue to pray for your recovery along with so many others. Grandchildren, & great-grandchildren have a way of immersing us in their play & forgetting the realities of the day. Keep your spirits high & keep hoping for the best, as we all do. You're always in our thoughts & prayers, Love, Mom & Dad
Dearest Debbie, I think of you many times throughout the day and always send a prayer to heaven. I know that from heaven there is visible a never-before seen illumination of love and prayers from our area that is all the talk among the heavenly bodies!! For I know how loved and cherished you are because I know how much of an impact you have had on my life, and you don't even realize it!! Take care of yourself, Debbie. I will continue to keep you in my thoughts and prayers with love and hope. God bless you and your family. "XOXO" Sue Leidy
Hi, Aunt Debbie. I keep checking the blog, hoping for some good news. I was happy to hear that you had a good visit with Jess and the family. I'm sure you've enjoyed your time home and aren't looking forward to going back to the hospital. Will you have to stay for an extended period of time again? Being unique is usually a good thing, but it's just not working out for you! I'm still hopeful that one of these other hospitals will come back to you with some other treatment options. Did you ever hear from the hospital in Houston?
I was hoping Jess would post some more updated photos for those of us who haven't seen you yet. Please put me on the waiting list for a visit!
You, Uncle Joe, Jessie, Joey, and Mikey are always in my prayers.
Love,
Lisa
Dear Sweet Debbala.. Bon-Bon calls you that too..did you realize?? You are just too dam cute to have anything more happen to you honey ...so continue having fun with Mr.C and the gang,and put your love and trust in Jesus. I know He will take care of you..He loves you so much...we all love you so much! So my dearest one,have heart ,have faith , have trust,..love:)Bev
Dear Sweet Debbala.. Bon-Bon calls you that too..did you realize?? You are just too dam cute to have anything more happen to you honey ...so continue having fun with Mr.C and the gang,and put your love and trust in Jesus. I know He will take care of you..He loves you so much...we all love you so much! So my dearest one,have heart ,have faith , have trust,..love:)Bev
Hey Tek. i wrote you earlier tonight but it got lost in the cyber wind i guess.. first of all , i had said, don't ever feel like you have to apologize to us! Holy Shit(sorry aunt angie) you are sharing a part of your life that alot of people would never share.. also, none of us can blame you for feeling scared!It seems like every road you've tried to take has had some sort of road block.. im sure that you will figure out which way to go once you are given all the options..Im hoping that one of these hospitals has some good options for you..
My day was fine.. it's been quite nice and warm here lately.. i've been opening the screen door and windows!Mark has been out practicing his baseball after school.Patrick did homework.. one of the boys in our class today shared that his "mommy got mad at his daddy cause he said a bad word!" another boy asked him "which bad word did he say" these are 5 year olds!
Glad you and jesse and your grandson are having a good time.. how is Joe doing? well, i will continue to send you my positive vibes.. love you, mdf
Hello Chizzie-
like mdf - I tried to post last night and got caught in the cyberwinds. When, oh when am I going to learn to click select all/copy before hitting the publish button??? (Note to self: Don't drink and blog. FOD's - you can heave a deep sigh of relief at being spared my champagne induced deep thoughts.)
Know that you are heading down to HUP today and just wanted you to know that I'm thinking about you.
Once again the Daily Word calls out your (and our) name:
Guidance
Divine love guides me in all my decisions. I am wise and confident.
Dear God, Your spirit of love within my soul is my best resource for spiritual understanding and guidance. In this moment of prayer and meditation, I invite You to guide me in all matters.
As I gently breathe in, I grow more attuned to Your guiding spirit. As I exhale, I release any preconceived notions of what should be or anxiety about what could be. Calm and confident, I am receptive to Your guidance.
Thank You, God, for guiding me through life thus far and for guiding me in days to come. Thank You for Your spirit of love that guides my loved ones, that inspires the leaders of the world, and that invites humanity to greater levels of understanding and harmony.
"Teach me to do your will,
for you are my God.
Let your good spirit lead me
on a level path." --Psalm 143:10
I love you honey.
K
Hi Deb,
Sorry the news once again is not very encouraging. I keep hoping with all of our prayers that God is using you to test our faith and that a miracle is just around the corner. Keep looking at everything thats out there for you to consider. I'm sure a positive answer is there somewhere.
I'm glad you had a great weekend with Jessie, Walid and Christain.
My love and prayers are with you guys
Love, Dick
Dear Deb,
I've had you in my thoughts and prayers since I saw you in the ER last year and you've been on the prayer list at church. Jill W. just filled me in on the latest. Just remember how many of us are out there pulling for you. Take care and say hello to Joe for me.
Love,
Trish S. (CMMC ER)
Hi Debbie:
The South Carolina clan is sending prayers to heaven for you! We are praying for a miracle.
I can't believe there isn't something that can be done.
Thanks for taking the time to post and hang in there......
Hugs, Love and Prayers..
Cindy, Keith, Dan and Andrew
Deb,
Just wanted you know that I have a really good feeling about what's ahead. After weeks (seemed like months) of praying Romans 8:26, I've suddenly been given a sense of assurance, no wait; more than that - optimism. Maybe God finally got tired of all our begging and pleading and tears and said, "Enough, already! Here's your miracle." Maybe it's something else, but I can generally trust my feelings.
On another note, all this grand-baby talk is making me jealous!! Matt's house is coming along. They 'need' more furniture, though, so they want to wait another 2 years or so. And we got the official word from Kate-she's moving out to Santa Barbara, probably this summer. Hopefully it'll only be for the 2-year stint and they'll move back east, but I have a feeling they're really gonna like it out there...
Blessings to you and your family. So glad you got to be together this weekend. Looking forward to hearing about many more weekends like it.
Lotsa love, Mussie
Just wanted to let you know that I am thinking about you! :) Cousin Eileen
Hey Deb (et al)
First, thanks you so much for the beautiful necklace and earrings (and yes, I do wear jewelry). You chose well and I will think of you everytime I put them on. You are too sweet to be thinking of me during your journey.
I am always amazed to read on your blog how many people adore you...you have touched and become friends with so many special people.
My thoughts are with you and again if you have any questions/concerns about any aspects of the treatement options, I would be thrilled to answer/share my opinions.
hugs and positive energy
Patty (Nurse Patty)
Hi honey ..I know you saw Dr. Porter yesterday and I continue to pray that he gave you something positive to look forward to..I still hope that you will soon consider alternative therapies that are out there ( and let real people not just books help you) I will be off the blog for awhile but please know that my prayers and heart are with you..My visualization for evermore is you and Mr.C running on the lawn in your matching woolen snugly hats (too cute!!)stay strong, open your heart and mind to trust...it ain't easy but I think it works.. I love you :)Bev...for all the FOD's out there I need to have hip surgery, so I won't be blogging for awhile... just want you to know that I've come to love and care for you all ..this is truly a unique happening ..our hearts and souls coming together ..great unity of purpose, great power...I feel like a great and miraculous result is it's way..God bless you all thanx for the inspiration it's changed my life!!:)B
Hi honey ..I know you saw Dr. Porter yesterday and I continue to pray that he gave you something positive to look forward to..I still hope that you will soon consider alternative therapies that are out there ( and let real people not just books help you) I will be off the blog for awhile but please know that my prayers and heart are with you..My visualization for evermore is you and Mr.C running on the lawn in your matching woolen snugly hats (too cute!!)stay strong, open your heart and mind to trust...it ain't easy but I think it works.. I love you :)Bev...for all the FOD's out there I need to have hip surgery, so I won't be blogging for awhile... just want you to know that I've come to love and care for you all ..this is truly a unique happening ..our hearts and souls coming together ..great unity of purpose, great power...I feel like a great and miraculous result is it's way..God bless you all thanx for the inspiration it's changed my life!!:)B
Hey Tek, not much to say today cause i already got the scoop from mo about the outback and all.. glad your having fun with christian..know you have a lot on your mind(*understatement of the year!)wish i could be of some help, but know that my thoughts are with you!Say hi to Jessie and al for me..love you, mdf
Hey Tek, this blog cup is runneth over! You sure have alot of friends. i only have 4 out here(ha) ... school was fine today , the kindergardners were wound up.. tomorrow we are taking them on a field trip to the park.. it's been in the 70's still.. could we be in global warming??Finally got an email from Kim .. kind of a cheap thrill... she sounds great, and im sure she looks it also..haven't heard from mo today.. going thru a touch of withdrawls with that...
well deb.. hope your keeping your strength up for everything.. thinking about you..mdf
Hi Deb,
It was so wonderful to see you the other night. C. is such a wonderful little guy and Jess you are absolutely radiant.
Love, hugs, and prayers to your whole family.
jean
Deb,
I think I'm glad now that you never saw me pregnant... I'm afraid "beached whale" might have been the phrase you chose. =) In all seriousnes, you are an amazing person. All of us have something to learn from the way you're dealing with this situation. Please know than an incredible amount of positive energy and love is being channeled your way from Ohio. (And everywhere else from the sound of it.) We love you!
Kathy, Marc & Taylor
Hello Deb and Joe!
Just waiting for that next posting like an addict for a fix! (Bad analogy), but seriously, Joe we all got so used to your notes to us and we have not heard from you in quite a while. I,m sure it is not without good reason. The recent turn of events in Deb's journey has been a slap in the face for all of us. Deb I hope you are continuing to have good days. If you are, than the Good Lord is with you and answering all our prayers. If your not, well I know the Good Lord is still with you. You are not taking this walk alone. There is only one set of footprints in the sand and they are not yours Kiddo! :) Joe if you feel like sharing any thing, my friend, than just do so when your ready. :) We love you and are here for you. :) Meanwhile just keep hugging that wonderful lady and companion in life, you call your wife. Love her and be her rock! Let us know if we can do anything. Love Artie and Cathy
Hey Deb, hope you still have Jessie and the hurricane with you.Didn't realize that he is not even 2 yet!Tha will be nice to have them so close together jess.Well, need to go do my morning ritual of telling my son his shower is toooo long.. hope today is good for you.. Im still sending you those californian, episcopalian good vibes, thoughts and prayers.. love you, mdf
Debbie,
Just wanted to check in and see how you are doing... hope you're feeling great!
xoxoMegNoon
Hey Debbie:
Checking in after a long day of auction preparations. Tomorrow is the big event and none too soon as I am beginning to get a little edgy with people.
But through it all I have kept you in my thoughts throughout the day. Especiallly when peoples personalities start to get to me.
Know that I have you ever on my mind and will call you as soon as the weekend is over. I miss hearing your voice and need a Debbie fix.
Take care. Love to all. Eileen
Mrs Teklits,
Hope you are having a good day being snowed in with Jessie and Christian (who is the cutest baby in the world!!!)... Thank you for everything and letting me stay this weekend... I wish I was snowed in with you all today ! haha!
I will be praying for you and the decisions you have ahead!!! stay soo strong!!!
Miss you
<3
Alli
Hi Tek, wow, sounds like you guys got royally dumped on with the snow!!Probably not the best time to share the beautiful weather we've been having here..don't really know why, but still in the upper 70's...kids are playing in shorts and t-shirts, some men are out running with just shorts on..but we will get our turn,usually in april just when the boys baseball season is in full swing...then all the games are postponed..
I have been checking the blog several times aday, but decided the heck with it, i'll write here in hopes that you do still check them..
Good luck in your next adventure, i am still constantly thinking about you,and talking about you,,love you, mdf ps..is jessie and family snowed in with you??
Hey Tek,it's me again!! This is getting kind of scarey..either everyone is really busy out there..or im starting to make conversations with a little box on the computer! but even as nutsy as i may have become, i'll still continue to write in hopes that you do still check on these...
Hope ths storm is done a nd the streets are getting plowed.. like i said earlier, we'll get our turn..its suppose to turn cool(in the 50's) and wet by the end of the week,,sort of figures,, mark has a baseball tournament next weekend. but today is still nice, so will enjoy at least another day of it...
Not too much else going on.. Patrick caught some of his "friends" starting to tp our house again last night..they only got one roll up in the tree,they (they were the wrestling team) apparently had 100 rolls in their cars!!so i guess we got off lucky..don'tlike being tp'd
Deb, hope jessie is still there,but if she had to go, then i hope she got home alright..Really hope your holding your own and feeling okay!Don't know what your next step is,but i will continue to send you strength,hope and prayers for it.. lots of love..mdf...
YOOOOOOOO WHOOOOOOOOOOOOO? are we all still blogging? where has everyone been??mdf
Hi Debbie:
Tomorrow I am going to attempt a call to you. I know that you may have your cell off for some much needed rest.
I can now relax. The auction is over. My kids were thrilled with a family dinner tonight even though it was my old standby of Chicken Tetrazzini. I have to work back into the parent role. Of course they didn't waste time racing out to the last regular season home game. Amazing how now I just say goodbye and they get there on their own. Time flies!
Spent some time with your Aunt Angie today. She is a hoot! She had hung some curtains that she got on-sale on-sale from Penneys for $16.00. Not sure if it was the price or the look that made her so happy. They actually were a much needed extra to her living room decor. She's only been in the condo for 4 years.
Dave is home in between cases as he is on call. One of the nice things about a small town but the small hospital sometimes is very slow in OR turnover and staffing is even more of a problem. It is a sore spot! He sends Valentine wishes to his favorite cousin in law.
So I am waiting on the next blog for an update. Where do you stand with the SCT an/or chemo? I attended two masses this weekend. One at the auction then Bee had a Sunday night game against our old priest's grade school in St. Louis Sunday night which included mass. It was easy to do the second one because Fr. Jack motivates me spiritually more than any other priest I have known. I cried during his homily. I am not sure if it was you, the message or his move to this parish a year ago that set me off. I would like to think it was a combination. I keep you close in my heart and mind always. I look forward to talking to you this week.
Lots of hugs and warm smiles your way! Love Cousin Eileen
Hi Deb,
I keep you in my prayers. I think of you always. Still sending good vibes your way.
MDF, yes we are here. I usally jump on at work for a few, but lately have barely had time to check in.
Take care to all,
jean
Hey Chizzie and FOD's
Just back from my stay in Ohio and thought I'd check in to see what was happening. Couldn't believe all the snow on the ground when I got back here in Jersey.
Also can't believe that the long and chatty post I posted before I left has evidently been scattered to the the cyberwinds. Don't ask me what the heck happened but it really ticks me off that it is now MIA.
Hope everyone is well and digging out from under the snow. Except for you, lucky mdf-kids running around in shorts! That sounds like a dream to me as I sit here in my thermal cuddle duds and multiple layers.
Chiz - you sounded teriffic when we spoke this weekend. Loved the thought of you and Christian frolicking in the snow. Hope all is still well and that you are moving forward with your treatment plan.
Has anybody heard how Bev is doing after her surgery?
Prayers and kisses, oh and Happy Valentine's Day sweetie - K
Here i am , talking to this little box again! Deb, i hope your v-day was okay, probably not as good as mine.. i got 15 spiderman valentines from the kids in the k classes,ha..don't kow your next step, but im sure you have all done alot of research on what is nextand will be making the best choices for now..... good luck with it.. know that we are all thinking good thoughts for you.. and kris.. its suppose to rain this weekend.. so the shorts might go back in the drawers(except my son patrick. he wears his year round!)love you deb,mdf
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