Cole's Thread for Dec 4 - 9

Discussion in 'Countryside Families' started by Alice In TX/MO, Dec 4, 2006.

  1. Alice In TX/MO

    Alice In TX/MO More dharma, less drama. Supporter

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    Hi, Homesteaders,
    I decided to do a thread that spans a few days to make things easier.

    Cole is back in his room after the biopsy and hip bone marrow aspiration. They did not do the other nuclear scan or put in the port for chemo. Don't know why about the scan, but they want to get the information about the cells before they decide which type of port to install.

    Cole's looking good. His color is good, and he's sleeping. He was aware enough that when the nurse was taking his vital signs, he was shaking his head, 'no no.' Didn't wake up or open his eyes, but he let his opinion be known.

    The doctor said that a preliminary look at the biopsied material showed that the cells of the tumor were small, round, and blue. If you are incorporating visualization in your prayers, now you know what they look like.

    We've had lots of support today. We've had folks come by from the squadron, from Wendy's YMCA exercise group, and lots of phone calls from friends and family. Even one of Nathan's college professors.

    The doctor said two days till we get the pathology report back, then we'll know more and which chemo he'll be getting.

    We are working on setting up a system for the folks who have asked how to send funds to help defray expenses for gasoline, etc. I'll let you know when that's been arranged.

    Keep praying; it's working.

    Thank you so much for your prayers and support.

    Rose
     
  2. Tricky Grama

    Tricky Grama Well-Known Member

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    Thanks so much Rose, for the update. Prayers are still w/all of you. We'll all be checking in.

    Patty
     

  3. Dixie

    Dixie Well-Known Member Supporter

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    Continued prayers for Cole and all your family. {{{hugs}}}
     
  4. countryheart

    countryheart Well-Known Member

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    I will continue to pray for Cole.


    Countryheart
     
  5. BasicLiving

    BasicLiving Well-Known Member

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    You, Cole and your family will stay in my thoughts and prayers.

    Penny
     
  6. Terri

    Terri Singletree & Weight Loss & Permaculture Moderator Staff Member Supporter

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    I am imagining NEEDLES poking those small blue cells! Right in the CENTER!

    It probably does not help, but, it can't hurt!

    Prayers said also!
     
  7. largentdepoche

    largentdepoche Well-Known Member

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    Thanks for the update! We're continuing to pray for the little one and your family too!

    Kat
     
  8. katlupe

    katlupe Off-The-Grid Homesteader Supporter

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    I'm praying for Cole and your family. You're not alone, we are all with you.

    katlupe
     
  9. momlaffsalot

    momlaffsalot Well-Known Member

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    Thank you for the update. You are all in our prayers daily.
     
  10. Alice In TX/MO

    Alice In TX/MO More dharma, less drama. Supporter

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    Good morning. I think I beat Moopups for early posts today. :)

    Cole is doing good. They are keeping him on morphine for a while, so he's resting peacefully after the biopsy. Color is good, temp good, BP good, heartbeat steady, respiration even. Can you tell we have a monitor now?

    We have had a bit of frustration with communication between the Navy doctors, Tri-West Insurance, and the doctors here at Children's Hospital San Diego. For a while we couldn't get the Balboa Hospital doctors on the phone, nobody seemed to know who could officially make decisions about where Cole would be treated, and the insurance folks didn't even know where he was, although Balboa Hospital assures us the paperwork was done before the transfer here. :shrug:

    I think we've jumped all those hurdles correctly and are moving ahead.

    We were also given some conflicting information and worst case scenarios by his oncologist. There seems to be some sort of unwritten rule that one doctor has to be that way. :nono:

    There's a possibility, depending on what the pathology report says, that we may be moving to St. Jude's in Memphis. This remains to be seen. St. Jude's is doing research on one of the kinds of cancer that it might be.

    We're hanging in here.
     
  11. huzzyjr

    huzzyjr Well-Known Member

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    Howdy Ya'll

    Continued prayer's and good thought's.
    Carol
     
  12. mwhit

    mwhit Well-Known Member

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    Rose,

    Keep hanging in there! You and yours are in my thoughts and prayers. I highly suggest you push the doctors for a referral to St. Judes... great things are being done there. Also, St. Judes offers treatment regardless of insurance coverage so answering to the insurance company, pre-approval etc. will not be an issue. Not sure if you've seen this, but here is the St. Judes site. http://www.stjude.org/patientsandparents Please, do yourself and Cole a favor and educate yourself about neuroblastoma-- it will make it much easier to understand what the doctors are saying. I also can't stress enough that you need to find doctors that are knowledgeable regarding neuroblastoma and who are willing to help you understand the situation. Take care!
    Michelle
     
  13. A'sta at Hofstead

    A'sta at Hofstead Turkey Wrangler

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    Still praying Rose. I picture the pics you posted when I do.

    Asta & Family
     
  14. Alice In TX/MO

    Alice In TX/MO More dharma, less drama. Supporter

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    I've been browsing the St. Jude's web page. If the labs come back as neuroblastoma, that's for sure where we need to be. I hope the Navy and Tri-West will work with us.
     
  15. davaseco

    davaseco HERE chickie-chick-chick

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    Rose in our experience...
    1.parents/family are often demanding information before the doctors have enough to make informed statements, so some remarks may sound contradicting as more information comes in.
    2. Our oncologists told us the first day...I'm gonna give you the worst case senerio...then tell you my opinion. This way you know the worst, can hope for the best and you will never be severly disapointed and most often pleasantly surprised. We were always relieved when thing worked out much better than it could have and never had to deal with doctors who got our hopes up and then were wrong.

    St Jude's is a wonderful place. Please be informed that they do their own clinical trials as does Dana Farber... most ped oncology clinics are part of Children's Ongology Group (COG).

    Prayers are still being said.
    PM me when you get a chance.
     
  16. Alice In TX/MO

    Alice In TX/MO More dharma, less drama. Supporter

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    We are making arrangements to get to St. Jude's. One of the Navy wives is working with AngelFlight to find a jet to take Cole and his parents to Memphis over the weekend.

    I'm going to be driving Nathan's truck from San Deigo to Memphis. Luckily, my van is at our place in Missouri, only about 2 1/2 hours from there. I'll get someone from that area to follow me to Memphis in my van so that I can just leave Nathan his truck, but have my own car. Life is weird and wonderful.

    Just found out that my other daughter-in-law is related to Danny Thomas, founder of St. Jude's, and her grandparents were some of the founding members. Their names are on a brick at the hospital. Seems for us that the theory of 'six degrees of separation' is more like three or four.

    Keep those prayers, coming, please. We have already seen a miracle with his liver being clear. Turns out that he had to have a good liver to be accepted in the treatment protocol at St. Jude's, and his liver enzymes corrected themselves overnight. :angel:

    Pray for safe travels for all of us. Thank you for your caring and support!
     
  17. stars01

    stars01 Well-Known Member

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    Good news about his liver! I hope you are all hanging in there, I'm thinking of all of you.

    Best wishes from my family to yours.

    Paula
     
  18. ginnie5

    ginnie5 wife,mom,taxi driver,cook Supporter

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    I told my Wednesday night Bible study group about Cole last night and they are all praying for him too. I was wondering how things were going with him. Its strange but this morning a link came thru one of my homeschool groups on a family near here who is dealing with the same type of cancer in their 5yo.
    http://thesumralls.org/default.aspx
     
  19. Alice In TX/MO

    Alice In TX/MO More dharma, less drama. Supporter

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    Looks like Mercy Medical Air Ambulance is coming through for us. Nathan's working on the arrangements now. It was his tour in Iraq that made the difference and qualified the family for the flight; who'd have thought?

    Blessings come from the most amazing places.
     
  20. A'sta at Hofstead

    A'sta at Hofstead Turkey Wrangler

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    Sow the seeds of service and reap the rewards. It sounds like the parayers are working, we will continue to pray for Cole. I feel like I know the little trooper.