I am SOOOOO Tired!
Dear Fods,
Debbie's counts held today or went down slightly. Wbc is .3 and ANC is 240. No improvement today. We had meetings today with pain management to help Debbie control her abdominal pain. They have put her on a continuous dilaudid drip with a bolis that she can hit as needed. Her abdomen is still full of fluids even though the drain is continuing to drain. Debbie thinks that part of the problem now is with her kidney and liver functions. Her liver is now enlarged. She is still very uncomfortable and it is very painful for her to move at all. There were doctors with Debbie all day today and she is exhausted. She is sleeping now and has said her goodnight to the boys already. I have turned everything down or off so she can get some sleep.
Drs. Porter and Tsai approached Debbie today about beginning radiation/more chemo in order to start a second transplant procedure. They are of the view that the first engraftment failed because she was not immuno-supressed enough. We both find that too hard to believe. We discussed this previously and Debbie told them "NO WAY JOSE!!" Neither one of us believe that she could survive another round of chemo let alone now a round of radiation. Hopefully, her system will recover and we can go home -- whatever happens - happens.
Mike saw an orthopod this morning and had an MRI done today. He has a follow-on appointment on Thursday evening.
Debbie sends her love to all.
posted by Joe @ 5:12 PM
24 Comments:
Debbie & Joe,
We remain optimistic even though the "numbers" dropped slightly, or held "par". The medical staff should do their best to relieve Debbie of her pain, & hopefully there isn't any serious harm done to either the liver or kidneys. We believe that you'd have a majority vote against another attempt at a stem cell transplant. On what basis could the staff believe that Debbie wasn't adequately immunosuppressed? Let's hope that the pain subsides, Debbie can begin eating solids again, & that the "numbers" start climbing. Hopefully, Mike's injury isn't too serious, & that he's able to get around adequately. Love, Mom & Dad
Dear Debbie, How difficult this must be for you........wish there was something we could do to help. Of course, lots of love and prayers are always coming your way! Trying to think of some "fun" stuff to tell you. John and I went to clean the shore house this past weekend since the "renters" are finally out. He becomes a crazed person cleaning down there so we didn't even see the beach. Wish some of this energy was evident at this house! Then I was thinking how much you liked to clean!!!! The only thing missing down there was WINE GLASSES! Maybe left at the beach??? Or broken at a wild party!! Back to WalMart for more. Hope things start looking up for you SOON!!! Love, Trudy
hey deb,
thinking of you always.
love, kathi
Dearest Debbie,
shoot..darn, gosh golly (I'm actually translating from the nasty curse words I'm really using)..
You poor poor thing. We'll all notch up our prayers, know lots of love and prayers being sent your way.
Come on counts... keep climbing, keep draining that Guinness (always hated that stuff)...Sleep well tonight, Joe, hang in there, you too must be exhausted. I'm with listening to Debbie so far she has been way ahead of the Doctors...
Catch the biggest virtual hug... lots of love, Visitor Alison
Deb & Joe,
Hopefully they are doing all they can to relieve you of your pain and that your kidney and liver are ok. I hope they finally clear this up and your numbers start climbing and you can come home. We're thinking of you both always and you are in our prayers. And, I hope Mike is fine.
Love,
Jeanne
Deb I don't know what to say. I am praying for you. I really am hoping you catch a break here!! Keep thinking of coming home and hearing the crickets and looking out over your porch into the woods. XXOO Jenny
Dear Debs..you are a true wonder...I can just see you telling Doc Porter..."No way Jose"...I hope they know enough to listen to you now... you are never wrong!!!You definitely need a break right now ..you ARE strong ,but some fever free days, food and drink and "good" rest is what the Doc should really order...and if he dosen't then you just go right on ahead and write your own damn orders (like NPH -ICU) remember THOSE days????
GO GIRL!!! WE are still with you, I love you,and continue multitudes of prayers daily..Hugs and Kisses(Tobie and Dean send love and prayers too..just spoke with both of them)..REST..:)Bev
Deb:
I'm so sorry to hear you're having such pain, do push that button! Don't worry about tomorrow, just get through today.
Charlene Winters just called to ask about you, she's going to Italy this week and will say prayers for you at the Vatican. You know we all love you, Deb--just get better soon. Life just isn't the same without you around. So I'll put the kettle on now and hope those numbers climb through the night. Sleep well, sweetie.
Love,
Cathy
Deb,
Just want you to know that I am thinking of you. I try to imagine how things are going for you, how you must be feeling, and what you are thinking. It is impossible!
If there is anything I can do for your family during all this stuff, please let me know. If Jesse needs anything when she comes up with the kids, say the word.
BIG HUGS and KISSES
Susan
Oh honey,
I am so sorry for your troubles today!
But I second our FOD Bev when I say I can hear and see you saying, "no way, Jose! to the Docs." You know how you feel, Chizzie.
Praying that you can take a few days to work through this immediate situation and THEN focus on longer term solutions. Until then, rest, hit the bolus when you need and continue to heal.
One step at a time, honey lamb.
I love you, my prayers are with you and like FOD Jenny says, think of looking out over your porch into the back yard and listening to the crickets.
Extra special prayers going up tonight - Love you -K
Aunt Debbie and Uncle Joe,
I'm sorry to hear that the pain and bloating are still there. I was hoping it would go away quickly once the drain was put in. You don't deserve to go through all of this pain and I don't blame you for not wanting to go through it all over again. I hope the docs are able to control the pain and make you comfortable. Let's look on the positive side...at least your counts have improved and aren't still at zero. I think Uncle Joe said you needed 500, so that'll be our new goal. You continue to be in my thoughts and prayers.
Lisa
Debbie and Joe:
Just home from Colin's JV football game. They won 33-6.
I read the blog as soon as I got home hoping to hear of more improvement but the news seems to remain the same. About Porter and Tsai...what are they thinking? Can't they tell that you are physically overwhelmed?
My heart aches to see you in such pain. I pray that you can get the numbers up so you can head back to Tennis Way for some real R&R.
Deb...keep the faith...I know it must be terribly difficult. Know that we are keeping you in all our prayers and sending you lots of Chalk hugs.
Much love...COD Eileen
Dear Deb Joe and family;
I am so sorry for the pain you have. I feel so helpless , hopefully our prayers will be answered and you will be back in Tennis way real soon.
Lotsa of love to all the family
BIG HUGS
Your Aunt Angie
Good morning Chizzie-
Just checking in to tell you I love you and to let you know I am thinking of you. Hope today is a day for feeling better and improving numbers.
Not much happening here Chiz - just the usual stuff. Mr. Hal heads to Kansas this afternoon, he will be gone til Friday. Thursday is another open house so you know what that means - clean, clean, clean. Ha-ha. Talked to Karen, Mimi and Krissy yesterday - they all send their love and want you to know that they are praying for you. And you know me, always hitting that Daily Word. Thought this would be a good one to share. Lighting the candles and praying extra special hard for some inner peace and inner healing for you today, Chiz.
Today's Daily Word - Tuesday, September 19, 2006
Inner Peace
God is my refuge and my strength. Always in God's care, I am serene.
No matter what is taking place in my life or in the world around me, I know that God is the source of peace that soothes my soul.
Knowing that God is my refuge in any challenge of the mind or heart, I don't let doubt or fear get in the way of me making wise and beneficial decisions.
The peace of God within me is more powerful than any situation in life. I can and do experience true serenity as I retreat to the sanctuary of peace within. Here in this sacred retreat is where I gather my thoughts and am renewed in mind and body.
God is my strength, a very real help in times of challenge and opportunity. Knowing that I am always in God's care, I am relaxed and at peace. I am serene.
"God is our refuge and strength, a very present help in trouble." --Psalm 46:1
May God be your strength today, honey.
Love you - K
Morning Debbie ~
I'm sitting here having a nice cup of tea and thinking about you.
No shore this weekend. Stayed home to celebrate Kevin's birthday with the girls. On saturday we went to the movies "invinceable". One of thoses great movies you just wanted to stand up and cheer for the main charater at the end of the show!
Saturday night we had a wonderful dinner at the Dilworthtown Inn. We'll have to go there when you are ready to travel. One of Kevin's bithday gifts was a beach chair with "West Catholic" monogramed on the back cover of the chair. He loved it!
Take care, we love you.
Miss Donna
Mrs Teklits,
Thinking about you & hoping for another rise in your counts so that you will be home soon!!!!!
all my love <3
alli
A little boy goes to his father and asks "Daddy, how was I born?"
The father answers: "Well son, I guess one day you will need to find out anyway."
Your mom and I first got together in a chat room on Yahoo. Then I set up a date via e-mail with your mom and we met at a cyber-cafe.
We sneaked into a secluded room, where your mother agreed to a download from my hard drive. As soon as I was ready to upload, we discovered that neither one of us had used a firewall, and since it was too late to hit the delete button, nine months later a little pop-up appeared that said:
"You've got male!"
Hey, did i miss something here? Did the doctors get the bmb results back and that special blood test for the engraftment? Are they speculating? or know for sure that it didn't take?
Im still hoping and praying that the reason your cts aren't all the way up yet is because they still are fighting all these infections!!
Deb, i hope you got some pain free sleep last night! Will keep up my hope and faith that the results will be good today.. love, mdf
Dear Deb, Joe, and family,
I have you all in my prayers. We know that Deb does things the hard way. I am praying that her break comes soon. You all are so wonderful. Keep strong. Deb, I have your picture with Joe on the beach in my office. Every time I look at it I say a prayer for you both to be in the same place next year looking just a happy.
Love, hugs, and prayers,
jean
Hello Deb,
I read your daily posts with anticipation and hope. I saw our friend, Kathy, yesterday and we rejoiced over the news of your counts coming back.
I have to keep reminding you, I had 0 neutrophils going into my radiation and chemotherapy.
I try to think of stories from my journey that can encourage you without being trite. Before my transplant, they found a large "mass" on my ovary. Mass + ovary = not so good.
Of course they couldn't operate (sound familiar?). They did an MRI and decided it could wait until after the transplant.
"Probably" isn't cancer, but that is waiting for me someday.
Sara Groves is my favorite Christian singer. I listened to her constantly before my trip to Seattle. I thought of you when I heard this song again this morning:
It's going to be alright. It's going to be alright. I can tell by your eyes that you're not getting any sleep. And you try to rise above it, but feel you're sinking in too deep. Oh, I believe, I believe that It's going to be alright. It's going to be alright. I believe you'll outlive this pain in your heart. And you'll gain such strength from what is tearing you apart. Oh, I believe. I believe that. It's going to be alright. It's going to be alright. When some time has past us, and the story can be told. It will mirrow the strength and the courage of your soul. I believe. I believe I did not come here to offer you cliche's. I will not pretend to know of all your pain. Just when you cannot, then I will hold out faith for you. It's going to be alright. It's going to be alright.
"Let him have all your worries and cares for he is always thinking about you." 1 Peter 5:7
Praying for you, Linda M
Dear Debbie,
What to say... there is nothing to say that we all have not said before, but we will keep saying prayers, thinking of you sending all our love and strength your way.
At the Christening some folks who had been on the cruise on the Hudson were also with us on Sunday. They reminded me that not only did we sing "This little light of mine" on the boat, but apparently I had everyone singing it at 3 seperate locations that evening! One girl said she woke up with a blister on her thumb wondering where she got it and she said oooh yeah I burnt my thumb and used all the gas in my lighter for Alison's friend who needs our prayers! So 5 of us left the Christening at 5pm to light our lighters and sing for you...(we didn't want to appear like the loud Irish drunks at the Italian-Irish Christening so we were discrete!).
Pennys from heaven have been everywhere since Friday.. FODs et al, I believe that pennys are "put" in places for us to find as a sign from spirits who want us to know everything is going to be OK, a gentle reminder that they are watching over us. I know here in the US folks think it's good luck to find them heads up.. I believe every penny no matter what side up is a blessing. Well they have been practically hitting me over the head lately. Not just on the ground.. but in the middle of a floor that's just been vacummed, on a kitchen counter just wiped... falling out of dry cleaned clothes!.. as a fellow fod said there are no coinky dinks!
Dearest Debbie, here is a song I always sang to my son when he was little, I'll sing it to you when we meet...
Five Pennys
This little penny is to dream on, and dream of the things you can do.
This little penny is to wish on and make all your wishes come true.
This little penny is a dancing penny, see how it glistens and it glows,
As bright as a whistle, light as a thistle, quick, quick as a wick upon it's twinkling toes..
And this little penny is to laugh on, to see that tears never fall,
This little penny is the last little penny and most important of all...
For this penny is to love on, and where love is, heaven is there,
So with just 5 pennys if they are these 5 pennys you will be a millionaire, you'll be a millionaire.
Debbie, I know you are a millionaire surrounded by love & heaven on earth. May you continue to find the strength to fight this battle, you deserve every break. Lots of love, visitor alison.
Can you believe this!! Todays news on Italian Irish connections lol!
DUBLIN (Reuters) - Prisoners in Ireland and Italy have embraced the world of opera for an innovative project which will see sets and costumes designed and made by them used in a full-scale commercial production of Puccini's "La Boheme."
The scheme originated in 2004 at the high-security Maiano jail in Perugia and has involved collaboration between Maiano and Dublin's Mountjoy Prison where inmates have spent six months working from designs drawn up by their Italian counterparts.
Opera Ireland plans to use the finished products in its staging of Puccini'a most famous work in mid-November.
"It's an absolutely amazing project," said Opera Ireland's Conleth Teevan ahead of the launch of the company's winter program Monday.
"They're all very proud of the work they're doing in Mountjoy and they're learning new skills which they can use when they leave prison."
Around 25 of the prison's 500-strong population were working on the project -- the male prisoners on carpentry and the female inmates taking care of dress-making, he said.
A number of prisoners would apply for temporary release to attend the opera, he said, while the remainder would have the chance to see the production later on video.
A documentary, entitled "Boheme al carcere di Maiano," has been made about the Italian side of the endeavor.
Debbie & Joe:
I have many thoughts, but feelings of frustration & saddnes prevail. I wish to carry this burdon for you in some way. I believe how tired you all must be. If love & prayers provide strength, you are both being carried. I know this doesn't help much when you're in pain. Love you & praying for comfort for you, Lee
Hello Debbie dear,
And you are so dear to me...hope you know that already. I'm thinking of you constantly...just said a little 5pm vigil prayer and will be working the beads later. Just wanted to tell you that I'm going to be doing the LIGHT THE NIGHT walk too. I e-mailed practically everybody in our address book about this. Meg said she thought another FOD mentioned it too, but I must've missed it. What FOD is doing the walk??? I know Jess is going to do it in D.C. as it is a national event. I'm going to copy and paste the letter I sent out w/ my e-mail explaining more about it. As I say in there, I know we all feel so frustrated and helpless, and want to do something for our darlin Deb...well, here is our chance. And Alison, we get to carry illuminated balloons, so we'll also be glowing as we walk and sing this little light of mine.
This is the letter I sent out today:
I'm forwarding a message from my niece Megan. She is doing a walk called LIGHT THE NIGHT to raise funds for the Leuk./lymphoma Society, and I wanted to pass this along to as many people as I could. I'm going to walk also, probably at Gwyn. Mercy College on 10/14. There's a link in the e-mail that takes you right to their site to register, and if you can't walk but want to contribute you can do that too. Just click on SEARCH FOR A PARTICIPANT and type in MEGAN NOON. Her page will come up and you can donate to her walk. Megan is walking in Bobs' and Deb Teklits' name. I haven't registered yet, but you will also be able to donate under my name when I do. If you wish to walk you can do so individually or as a team. They also have corporate sponsorship programs w/ employees raising funds as a team and the corporation matched it. That's pretty involved for me to get involved with right now, but I can walk. The pace is casual, length varies from 2-3 miles and generally takes 30-45 minutes. The "light" part comes in the form of an illuminated balloon...red for supporters, white for survivors.
Bob is doing fine right now, but waiting for a match with a stem cell donor for a transplant that will take place sometime in late Oct./early November.
And as most of you already know, our dear friend Deb Teklits, has been at HUP for 6 weeks.She is in the midst of a courageous fight following her own stem-cell transplant.
I know a lot of you share my frustration at not being able to do something concrete to help Deb at this critical point in her life. So here's our chance to put our proverbial " money where our mouths are." The LLS is a dedicated and caring organization. You can read for yourselves what they do on their website, but it is truly a worthy cause.
Thank you all. If anyone has any questions/comments don't hesitate to write back, if I can help in any way. This is our chance to put our love and good wishes for Deb and Bob into action. Let's make it a winner!
Love, Mo
The address is:
www.lightthenight.org
Sorry for taking up so much space.
Deb I hope today was a better one. Waiting anxiously to hear how you are. Love ya' honey.
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