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eaglei

Urgent Prayer Request for DS

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Sending positive thoughts for the best of all outcomes for your child and for peace of mind for all.

 

Regards,

Kareni

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Praying for you all.

 

My sister is 2.5 years post transplant now, and while she does have some graft vs. host issues, she enjoys each and every day of her life. A guy from our church is almost 2 years post transplant and doing great. Praying for remission, a great match, and a complete cure for your son. It's such a tough road; praying you find all of the support you need to see you through.

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I am so sorry to hear your news and am praying right now. I have a friend who has had 2 bone marrow transplants--they suck, but the first one gave him around 10 years and the second one was I think about 5 years ago and no sign of recurrence.

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Yesterday was a very difficult day as we were apprised of the options.  There are two:  1)  bone marrow transplant, no guarantees; 2) death, weeks to two months.  We are feeling a lot of things, and praying that ds opts for the transplant, that the required pre-chemo will put him in necessary remission and he'll remain there till transplant happens, that a donor can be found, that the transplant is successful - and that he lives long enough for all that to happen.

 

Thank you all for your prayers, thoughts, etc.  We need them . . .  Our hope holds in the only One Who has all power . . .

 

 

Can I please add a public service announcement on behalf of your son? 

 

Please, add you name to the list of potential Bone Marrow Donors. It is absolutely painless to be tested. A mere cheek swab! 

 

A friend of ours was notified that he was a match. He was terrified of needles but bolstered his courage to prepare for the harvest and it went off without a hitch. How amazing to be able to save someone's life like that!  Please register!

 

Prayers that he would find the perfect donor and live a long and blessed life!

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May you rest in the knowledge that the God of all peace and comfort is holding you and yours tightly.  I'm so very sorry that you all are walking this path.  Your son must be an incredibly strong young man and you are a very strong momma.  We will be praying for you and your family as you make these decisions.

 

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Praying here!!!

 

  :grouphug:  :grouphug:  :grouphug:  :grouphug: :grouphug:  :grouphug:  :grouphug:  :grouphug:  :grouphug:  :grouphug:  

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eaglei,  thanks for your updates.  they serve as a good reminder to pray.  praying here for that "match". 

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Can I please add a public service announcement on behalf of your son?

 

Please, add you name to the list of potential Bone Marrow Donors. It is absolutely painless to be tested. A mere cheek swab!

 

A friend of ours was notified that he was a match. He was terrified of needles but bolstered his courage to prepare for the harvest and it went off without a hitch. How amazing to be able to save someone's life like that! Please register!

 

Prayers that he would find the perfect donor and live a long and blessed life!

I was just thinking about this. I registered years ago (I think I was 18), but obviously, all of my contact info has changed 10 times over, and I never updated it. I wonder if it would be easier to just re register.

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Can I please add a public service announcement on behalf of your son? 

 

Please, add you name to the list of potential Bone Marrow Donors. It is absolutely painless to be tested. A mere cheek swab! 

 

Do you know who you contact to do this?

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Can I please add a public service announcement on behalf of your son? 

 

Please, add you name to the list of potential Bone Marrow Donors. It is absolutely painless to be tested. A mere cheek swab! 

 

Thanks for the reminder. I have had my own medical problems that preclude me from donating, but my DH is very regular with blood donations. I'll get him to test for this.

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Btw, folks, if you are not already on the bone marrow registry list & are interested in it: http://bethematch.org/

Just wanted to say that you have to be 44 or under. So the more seasoned member of the WTM community won't qualify. But you spring chickens should check it out!

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I am so, so sorry to hear this update. Many positive hopes going out for you, your son and family. I wish I had magic.

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:grouphug:

 

I can only imagine how hard this must be for you to reenter this space you'd hoped had been left far, far behind.

and to walk this path with an adult child is, I imagine, its own complication... to be there for him, but to let him make his own journey, to be supportive, to meet your own needs for information...

 

I wish you peace of heart, clarity of mind, and a clear sense of G-d's presence as you work through this unbearable challenge - and that you know that there are folks here, and I hope IRL, who want to help carry some of your load, or to lighten it with our love and prayers, though we'd welcome something more tangible to do too!

 

...but I wish, too, that you didn't have to do this.  That one could just shout "No!" and turn away such nightmares.  That we could sign a petition to undo this - to banish cancer, to ensure that no mother (or father) had to help their child through such fear and suffering.

 

:grouphug: :grouphug: :grouphug:

 

 

 

 

 

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I want to thank you all for your continued prayers, thoughts, etc., and for the personal messages you have sent.  Each message has touched our hearts and seems to come at just the right time.


 


God is hearing your prayers.  PLEASE keep praying!


 


As you can imagine, these past few months have been very difficult.  It’s been a roller-coaster with changing information and then that awful news of relapse and the limited options.


 


According to the doctors, there is only one course of action without the bone marrow transplant and that is steady decline.  They gave ds up to two months - mid-April.  By now, we should have called hospice.  That hasn’t happened.  As far as choosing the transplant, ds has been in much prayer over it and was about to answer the doctors last week, but that decision ended up on hiatus again.


 


When he went last week for his check-up and potentially for a transfusion (which he did get - blood and platelets), ALL the staff AND doctors did a double-take and exclaimed at how good he looked.  They were clearly astounded and told us that shouldn’t be.  They expected him to look very bad and basically for us to be helping him in.


 


Over the last two weeks or so, here is what has happened with ds.  His appetite has picked up.  While he is not eating three square meals a day or even six mini meals, he IS eating more each day.  His strength is improving.  His voice is once again strong.  He is more active.  For example, whereas he previously was barely able to make it to church but insisted on going, and could barely walk to and from the vehicle and to and from the church - now, he stands (STANDS!) after church fellowshiping with friends!  This past Sunday, he stood outside for over half an hour visiting - and it was cold and windy.  He stood firm and strong.  Later, he walked across a mall parking lot to a store we were going to, walked around the store, and back to the car.  Then, a few blocks from home, he asked to be let out so he could walk the rest of the way, part of it uphill.  He was worn when he got in and took a nap, but he couldn’t walk like that a few weeks ago.  (He’s been going out other places, too, when a few weeks ago he was basically finding it hard to even get up, much less walk).


 


Additionally, we’ve had two big snow storms during this time.  He was outside shoveling snow both times!  About forty minutes this last time.  The doctors basically said no way and looked at us for confirmation.  They have clearly stated that none of this should be happening.


 


Ds asked last week if a second bone marrow aspiration might be in order as he was requesting one - the doctors said yes and scheduled him for tomorrow.


 


We don’t know if we are seeing a healing in progress, or God’s keeping hand until a transplant can be arranged, or ???  All we know is that SOMETHING is happening, it is good, it is confounding the doctors, and God is still on the throne.


 


We humbly ask that you keep praying for us.  I have no words to say how hard this all has been - nor how relieved we have been to see this progress.


 


Still holding on to the only One Who has all power . . .

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I was just thinking about this. I registered years ago (I think I was 18), but obviously, all of my contact info has changed 10 times over, and I never updated it. I wonder if it would be easier to just re register.

I had registered years and years ago. Recently, when a friend came down with a blood disease my church held a drive, the be the match person was able to retrieve my info and update my address. He also told me (according to the records) that 5 years earlier, I had been a match for someone but they couldn't locate me as we had moved (a few times). You have no idea how badly I feel about this. Hopefully that person had another match.

 

For anyone who signs up, please remember if you move, when you are filling out all your changes of address to update your info with Be the Match.

 

To eaglei, I am praying for your ds.

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Wow, eaglei. Thank you for your post & many continued wishes for the amazing recovery & improvements your son seems to be making. All of you continue to be in my thoughts.

 

:grouphug: :grouphug: :grouphug:

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More prayers for your son and your family.  I hope the bone marrow results are encouraging!

 

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