Cole's update, Dec 11 - 16

Discussion in 'Countryside Families' started by Alice In TX/MO, Dec 11, 2006.

  1. Alice In TX/MO

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

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    Cole is being admitted to St. Jude's in Memphis today. Both parents are there now. Wendy rode with Cole on the air ambulance, and Nathan followed the next day.

    I'm in route with Nathan's truck. The first day, I made it from San Diego to Van Horn, the second day from Van Horn to our place in southern Missouri. Nathan said he doesn't need the truck till this afternoon, so I get to rest this morning and get on the road again after lunch.

    Wendy said that Cole loved the air ambulance ride. The air ambulance was a Leer jet that made the 2000 mile flight in under three hours. Whew! What a blessing and a treat for Cole, who loves flying things.

    What I'm expecting is that over the next few days, we will gradually learn a schedule of treatment and figure out what our roles as support persons for Cole will be. I must admit, that as a person who goes into "rescue mode" at the hint of crisis, backing off to just be "Gran" who is available - but not involved in the process or decisions - is very very difficult. If any of you have wisdom in this, please PM me or post here. I'm going to need guidance.

    Keep those prayers coming. We have seen them work wonders already. :)
     
  2. Melissa

    Melissa member

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    St. Jude's is a great place. Let us know when you arrive if you can.
     

  3. heather

    heather Well-Known Member

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    Oh Rose, it must be difficult, but WHAT A BLESSING! that you are able to be with your grandbaby & be involved & be able to help when they need you. They are blessed to have you & we will keep praying here for wisdom & peace & healing.........Take care
     
  4. olehippy

    olehippy Well-Known Member

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    I missed the original post and I am going to go search for it.
     
  5. MarleneS

    MarleneS Well-Known Member

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    Rose, from your first sharing you have shown yourself to have strengths, wisdom, and a heart of the hero you are, I think you're going to be just fine. As far as being part of the decision making process, I think if you continue to always keep in mind it's not so much what we say as it is how we say it your family will be happy to have your input. Go with your gut feeling, if you gut tells you to back off - listen to it :)

    It was great to hear that Cole got to have an exciting and fun jet ride :)

    Thanks again for keeping us all up to date, wish there was more we could do to help you on a daily basis.

    Hugs
    marlene
     
  6. Alice In TX/MO

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

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  7. davaseco

    davaseco HERE chickie-chick-chick

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    Being a "Gran" in this kind of situation is difficult. you have your own wisdom and experience from being a mother, BUT this is not your child. The decisions are left for Mom and Dad to make.

    Having been there...done that.... my own Mother dropped out of the picture just one month after finding out my DD had cancer. WHY? because she had no control over what was done to my DD. And I resented her for leaving me when my family was in crisis. My DD was hurt needed ME...but "I" was hurting too and needed my mother.

    I guess what I'm trying to point out is that you do not need to merely go back to being "just Gran", but try going back to being "mother" to your son and DIL. They will need someone to make sure they take care of themselves while caring for Cole. They are going to have their hand and plates full with schedules, appointments, demands etc. Be the "dinner maker" or "Dinner-go-getter", grocery shopping, take over laundry duties, pick up meds from the pharmacy. Cole will not always be in the hospital, these things will need to be done. Be creative and plan craft projects, or simple play time with Cole so DIL or son or both can take a nap. But most of all BE ACTIVE in what meds Cole is taking and how he takes them, his appointment schedule, who his doctors are and Talk, Talk, TALK to your son and DIL about everything that is going on, listen to their fears, concerns. Even if you "Know" in your heart that Cole will be OK, they may not be able to have that blind faith. Don't poo poo their feelings, they are very real and very scary. And above all, do this throughout his treatment.
    I know a lot of this only applies if you will be nearby all during this time. You didn't say if you would be going back to Mo.

    You will be surprised how many friends and family will disappear. Just stop calling or coming by. Most will not know what to say. Some will be afraid to see Cole..not knowing what he'll look like...some just can't handle the talk of childhood cancer..they have their own children and it scares them.

    Be there for them. Even if you feel like your doing nothing. This is ALOT for a parent(s) to handle, even worse if they feel "alone".
     
  8. Alice In TX/MO

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

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    I've delivered Nathan's truck to him here in Memphis, after three days on the road. The trip went well, but my ears still buzz like that diesel engine!

    Cole's looking good and walking better now that his biopsy incision and the hip bone aspiration punctures are healing. He's more than a bit tired and overwhelmed by all the new and threatening experiences.

    Wendy and Nathan are tired and sad. I heard one of the physician assistants tell them it was like being hit by a truck, and that's a very good analogy.

    They are feeling the need to circle their wagons and focus on Cole's treatment for now, and the staff at St. Jude's is tending to them wonderfully. I'm going back to our place in Missouri for a week or so, get the last of the cabin remodeling done so they can use it as a retreat if they want, and just generally stay available, but not hovering.

    I did ask Nathan to call or email once a day just to let us know the current status.

    This situation is so very incredibly odd and stressful. Please hug your children, your spouse, your mother in law, and smile at the checker at the grocery store. You never know who needs their day brightened.
     
  9. primroselane

    primroselane Well-Known Member

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    That's why God made sunshine.
     
  10. mama2littleman

    mama2littleman El Paso

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    Rose,

    We will continue to pray for Cole. I wish I knew that you were passing through this way, I could have offered you a place to lay your head down. If you need to come through this way again, don't hesitate to let me know.

    Nikki
     
  11. Alice In TX/MO

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

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    From Cole's dad....

    It has been a few days since I have been able to post an update. My mom has been able to pinch-hit for me, but I'll try to add a little more from the past few days.

    On Saturday, Wendy and Cole took a private jet from San Diego to Memphis. Their total travel time was 3 hours and 15 minutes. The company, Compassion Air America, has a grant to provide air ambulance service to Veterans of Operation Iraqi Freedom and their famalies. My time in Iraq in 2005 qualified us for the transport. What a wonderful blessing it was.

    I flew out on Sunday, and took the flight schedule that Cole would have had to go on if the private flight did not work up. I was up at 4:30 to catch a 6:30 flight, had an hour layover and did not get to Memphis until 2:30 in the afternoon. It took another hour to get to the hospital where we are. That schedule would have wiped Cole out. Instead, he was taking a nice nap when I got here, and was feeling good when he woke up.

    Monday was a really long day at the hospital. We had a lot of visits with doctors, and a lot of orientation stuff. We were there from 8:00 in the morning until well after 4:00 in the evening. That's a long day for me, really long for a sick kid.

    My mom was right on time getting my truck out here after we got done with the hospital. We got her tucked into a hotel room and I came back to the hospital.

    About 9:00 monday night, I got really ill with food poisioning. I spent pretty much the entire night in the bathroom, and am still not feeling 100%, but I am better. I was able to keep all my food down today, but veggie soup is the most I have even tried.

    Cole started his chemo-therapy yesterday. The program he is on has a 2 month "up-front treatment window" where he is going to be on a low dose chemo along with a drug to shrink the tumor. Pre-clinical trials have shown that these 2 drugs (both used against nueroblastoma, but not together) have "synergy" against the tumor when used in lab mice. They are very optomistic about this course of therapy, and think that this method will be the future of nueroblastoma treatment. The plan is to shrink the tumor, then remove it by surgery, then do high dose chemo to get rid of what the surgeons can't get. It is going to be a long treatment process, probably close to a year.

    I will make sure to keep everyone here updated, and I hope that you all join me in wearing my knees out with prayers. This is going to be a very tough time for Cole, and his parents. The prayers give us strength though, we can really feel the power of everyone lifting us up.
     
  12. tinetine'sgoat

    tinetine'sgoat Luvin' my family in MO

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    Still praying for all of you. Keep us posted. (((Hugs!!!)))
     
  13. stars01

    stars01 Well-Known Member

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    My thoughts are with all of you, thank you for taking the time to update.

    Paula
     
  14. jessin

    jessin Well-Known Member

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    Thanks for the update. I will continue to pray for your family. God bless
     
  15. Tricky Grama

    Tricky Grama Well-Known Member

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    You are wonderful to provide us w/updates. Praying & thinking good thoughts for all of you.

    Visualize that tumor S H R I N K I N G...

    Patty
     
  16. Becca65

    Becca65 Well-Known Member

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    Sending thoughts and prayers!! thanks for keeping us updated!
     
  17. Alice In TX/MO

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

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    From Wendy, Cole's mom...
    December 14, 2006 at 11:41 AM CST

    REMEMBER THE LITTLE THINGS

    Dear Self,
    I am writing this to remind you that you have a tendency to be overwhelmed by your circumstances sometimes. I am writing this to remind you that sometimes you overlook the simple pleasures. I am writing this to remind you to remember the little things.

    Remember that God is present all around you every day whispering sweet blessings over your shoulder. Oftentimes, we learn best from our children because they take time to hear God’s whispers. Our children remind us to stop and remember the little things that we neglect to embrace as we get older. Stop and listen when you hear the rustle of the leaves, the rippling of water puddles, and the buzzing of bees. When your son wants to stop and rescue the snail underfoot, stop with him and encourage him for being so astute and compassionate. Stop and smell the freshness that the winter air provides and the clarity of the morning sun.

    Remember the warmth that you feel deep inside whenever you hear a child laugh. Remember the pride that you feel when your son first learns to draw a circle or wipe his mouth or wash his hair by himself. Remember the wisdom that you glean from being a mother. Despite all the education and job experience, your greatest accomplishment is the delicate balance that you maintain between being a mother and wife. This is the ultimate project management experience. Remember the joy that your son exudes every day is a reflection on his happiness that you have provided to him as a mother. Remember that his most comfortable position is curled up under your chin, and the most beautiful sight is a sleeping child. Remember that your hearts beat in unison and your emotions coincide.

    Remember too that no matter how irritating your other half can be, he is just that—your complement. Remember that your head fits perfectly in the grooves of his chest and the lock of his arms. Remember that God matched you together so you could provide each other strength and love, especially on days when you are scared to open your eyes. Remember how close you feel just by holding hands or locking stares. Those are the simple pleasures that give you words when you are unable to speak.

    Remember that this too shall pass. Remember those times in the past that brought you so close to the fire you could taste the ashes and cinder, and then remind yourself that your vulnerabilities will be the source of your strengths. The only difference between stumbling blocks and stepping stones is the way we use them. So remember that the sun will still rise tomorrow and the rain clouds will blow through. Remember that one of the greatest blessings is winter because it allows us to experience spring. Remember those around you who walk these battles with you everyday and their constant prayers help provide your support. Remember to give thanks for the little things and you will inadvertently find a lot.

    Keep praying and you will find peace. Keep seeking and you will remember the little things—the whispers God tells us every day.

    With all my heart,
    Wendy
     
  18. momlaffsalot

    momlaffsalot Well-Known Member

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    :Bawling: My heart and my prayers go out to all of you :Bawling:
     
  19. jen74145

    jen74145 Well-Known Member Supporter

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    Oh, I'll be praying for this baby... :Bawling:
     
  20. MarleneS

    MarleneS Well-Known Member

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    You are one amazing person Wendy :) Thanks for being you.

    marlene