The Leukemia & Lymphoma Society - Fighting Blood Cancers
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  • 285. Re: Got room for another newbie?
    FRAN641 Registered Users
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    Ed, I am amazed at your loving care of your wife.  I  keep all of you in my prayers and hope this phase of her problems pass quickly. 

     

    xo Fran

  • 286. Re: Got room for another newbie?
    moogaw Registered Users
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    We met with the Dr from Pallative Care this morning, and after evaluating Cindy, he felt like we were beyond Pallative care and should probably be looking at Hospice Care at this point. He felt like it might be a matter of weeks right now. The methotrexate treatment has not appeared to improve her neurological functions and her physical condition has continued to deteriorate.  He felt like we had exhausted all of the treatment options and they were just not effective against this second tumor in the brain.  He felt like trying to go to MD Anderson for treatment would be a long shot, and honestly with the way she's deteriorated over the last week, I'm not sure she could make the trip.

     

    We saw Dr Murphy also, and he agreed that we're at the point where further treatment is not an option and our focus should now be on her comfort.  He did a referral to hospice and I talked with them this afternoon.  They're going to start managing her care from now on out, unless of course things do change for the better. 

     

    This has been a long, and at times very difficult, journey but there have also been some great times along the way.  God has drawn us both closer to Him and to each other as we've walked this road together.  We've learned to make the most of each moment, knowing now that there are no guarantees for tomorrow.  Our faith in God has never waivered and throughout we've done our best to bring Him glory. 

     

    Steve and Annie Chapman had a song out long ago that said "Things are looking right for a miracle" and that's our hope, but we also know that may not happen.  That will be OK too, because His grace is sufficient in ALL things. 

     

    I appreciate all of you that have followed us, and especially walked with us along this journey, which appears to be coming to and end.  You have blessed us richly.  Many of you have written back, and I apologize for not answering your posts, but know that I read them all and was greatly encouraged by them.

     

    Ed

  • 287. Re: Got room for another newbie?
    kgirl Registered Users
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    Sorry is such a completely inadequate word  for the struggle, fight, courage and heartbreak these past months have brought to both you and Cindy.  I am once again awed and inspired by your combined faith and ability to draw close around you the memories of the good times shared amidst the turmoil and setbacks.  The decision to bring Cindy comfort, both earthly and divine, free of pain and disappointments is to my mind the offering of the most unselfish gift wrapped in  love complete.

     

    I thank you Ed, for allowing us to walk this journey with you, Your insight and grace spoken, "Things are looking right for a miracle" followed by His grace is sufficient in ALL things,  leaves me with a bit of peace within the pain.

     

    God bless you both, may angels guide your path.

     

    Barb

     


     


     

     

  • 288. Re: Got room for another newbie?
    FRAN641 Registered Users
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    Ed, we understand why you can't answer us but I am so grateful for the way you  have allowed us to pray and send our best wishes to you and the family.  Cindy is so blessed to have you by her side..  Know that we are here for you all the time.  Give Cindy a squeeze from me. 

     

    xo Fran

  • 289. Re: Got room for another newbie?
    jgold Registered Users
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    Ed:

     

    G_D bless Cindy, G_D bless you.

     

    We will always be here for you.

     

    Jim

  • 290. Re: Got room for another newbie?
    JudyColorado Registered Users
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    Cindy is such a positive person.  Would she be upset with our tears?  I went back and read all her posts ~ and she makes me smile.  I'm sure God will take care of you both - your faith inspires and comforts me as well. Sincerely - Judy

  • 291. Re: Got room for another newbie?
    mcee Registered Users
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    Oh Ed, Cindy is such a bright and lovely soul, and yes, things are looking right for a miracle.

     

    May our Lord bless you both, keeping you under his protective wing.

     

    mcee

  • 292. Re: Got room for another newbie?
    moogaw Registered Users
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    Hi Judy.  I don't think she be upset with tears, because I've certainly shed a river of them.  But the sadness is for those who are left after she passes.  We know that she is secure in Christ and will be fine, but those that remain here, that know and love her, will have a tremendous hole in our lives when she's no longer present physically with us. 

     

    I know a lot of these posts may seem discouraging, but we know physical death will not be the end, but the beginning of her life in glory.  She's looking forward to seeing so many of our friends from the past that have gone on before, and also our two grandchildren who never took their first breath.  She has lived out the example of Paul when he said "For me to live is Christ, and to die is gain."

     

    So tears are good, and healthy. and necessary, as long as their not tears of despair. 

     

    I wish we had know about you being from Grand Junction, because it would have been very cool to have met and talked with you in person.  Who knows, we may still be able to do that.  I'm not counting her out yet.  She's a fighter, and if God wills, there will be many more years and many more trips to take.

     

    Ed

  • 293. Re: Got room for another newbie?
    moogaw Registered Users
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    Cindy has begun eating  and drinking again, which could be a good sign.  She's had a couple of good mornings yesterday and today, where we could communicate and share things.  As the day goes on, it seems her mind gets more confused and I think it could be related to her physical stamina.  I plan on talking with the Hospice nurse tomorrow about the changes we've seen the past couple of days and see what they think.  I'm wondering if the things we were seeing since Thurs could be related to the after-effects of the chemo treatment.  She was worse than this after the first time she had it earlier this year. 

     

    This morning she decided she did not want the hospice bed anymore and wanted me to take it down.  I said I could not do that, but I asked if she wanted to go upstairs and take a shower today, and she did.  She also said she wants to sleep in her own bed tonight, so we're going to try that. 

     

    I was hoping she'd be much better today than yesterday, but I can't say with certainty that's the case.  She did have a lot of clarity, but she also slept quite a bit.  On the positive side, she ate a pretty good breakfast, very good at lunch, and then also wanted more food for dinner. 

    We're still praying that God would bring complete healing to Cindy physically and that He would accomplish His whole purpose in this trial we've been walking through.  We're still not sure what that means, but we're still trusting and following Him in all things.

     

    Ed

  • 294. Re: Got room for another newbie?
    ellieas Registered Users
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    Hi Ed-I have been away fromposting for awhile,but I have been keeping up with all of you guys.I am so sorry for what you and Cindy are going through-she has been such a fighter and gone through so much.

    My love is with both of you.Please take care of yourself,too,Ed! I am thinking of you.

    Hugs,

    Lesley

  • 295. Re: Got room for another newbie?
    JudyColorado Registered Users
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    I do believe Cindy is enjoying her time at home ~ nothing quite like good food, a shower, and bed!  Did that myself Saturday night.  Thank you Ed and Cindy, for the updates and inspiration you both provide.  It helps us to remember how God is a part of our lives - in everything.  Prayers are still coming your way - Judy

  • 296. Re: Got room for another newbie?
    moogaw Registered Users
    Currently Being Moderated

    I'm continuing to see some improvement in Cindy's physical condition as days go by.  This morning, she was able to get dressed by herself, and we went out to breakfast together.  Still though, as the day goes on, mentally she gets less and less responsive, and is not able to communicate very well.  I'm still hoping to see improvement daily through the weekend and into next week.

     

    I've been able to reduce the dosage of steroids down to 6 mg / day from 16 and I have not given her any ativan for two days now.  Reducing the steroids should help her get her strength back, and also help her skin sores to go away.  The downside is that if the swelling flares up again, she'll fall back into more permanent confusion.  She's still on anti-seizure medicine, and back on blood pressure and potassium supplements.  She's also getting the minimum dose of halydol - two per day.  Her agitation has all but disappeared, so there's been no need to give her additional doses.

     

    She's able to recognize people who come to see her, and even if it's late in the day, the next morning she remembers who was there the day before.  So there are some promising signs, but not to the degree where I think the chemo reduced the tumor.  Even so, we're continuing to pray for a healing touch from God's hand, in His time, and in accordance with His plan and purpose.  We're taking each day as it comes, thankful for the times when we can really communicate, and relying on His grace for the times when it seems she's distant.

     

    We appreciate all those who are walking with us on this path, and who have helped in so many ways.

     

    Ed

  • 297. Re: Got room for another newbie?
    ellieas Registered Users
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    Ed- I am glad that you see glimpses of improvement at times.Be grateful for thse(I know that you are).You are being the best husband that Cindy could ask for.She is lucky to have you.Try to get some down time for yourself.You are important too!.

    Praying for you.

     

    Hugs,

    Lesley

  • 298. Re: Got room for another newbie?
    moogaw Registered Users
    Currently Being Moderated

    Hi Fran,

     

    Cindy wanted to let you know that she's sorry she can't reply to your posts herself.... yet... but she appreciates the comments you post and is hoping to get well enough to begin writing again.  She also went for a manicure/pedicure this morning and had a wonderful time.  She even bought a new "heart" ring for herself.  I continue to see improvements each day.

     

    Ed

  • 299. Re: Got room for another newbie?
    moogaw Registered Users
    Currently Being Moderated

    Hi Jim,

     

    Cindy wanted to let you know she appreciates the comments you post, even though she can't reply herself... yet.  She's glad you're such a strong voice in the message boards.  (She's trying to dictate to me )   Someday, she hopes to be able to write again herself.  I'm hoping the same thing.  She had some "fun" things today which helped brighten the day for her.

     

    Ed

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