CONCLUSIVE UPDATE ON NICOLE GRACE

#1 · June 17, 2004, 8:15 am

Quote from Forum Archives on June 17, 2004, 8:15 am
Posted by: lifeunlimited <lifeunlimited@...>
Dear Friends, Family, In-Pact Partners, and Colleagues:

We finally have a definitive report on Nicole Grace's condition. Up to now it has been assumptions and probabilities without documentation, but now the documentation is in. Apart from a major miracle of God, Nicole Grace's tenure on this earth will be short. This is not part of the plan, but this is the way it is happening. It was our plan that Deanna would have a healthy and safe pregnancy resulting in the birth of another healthy little grand daughter. It was our plan that we would enjoy long years of being grandparents to twelve wonderful "Vnookie's" instead of eleven. It was our plan that our children and grand children would not have to carry the burden of pain, suffering, grief and sorrow, at least not at such an early age.

That is not what has happened. We will be blessed with twelve living grand children only for a short time; then it will be back to eleven.

Last week in my "Shoulder To Shoulder" letter, I wrote about God's "fingerprints". An amazing number of people wrote back in response. Even today we continue seeing God's fingerprints. For example, in an unexplainable and uncanny way, Jim and Deanna, along with the two of us, began to experience an unusual peace of heart over the situation at almost the very same time . . . . within hours or less of each other. We began to anticipate that the final report was not going to be a good one from our perspective. We were right.

While our praying continues unequivocally to be for healing and restoration, God has released us to also pray in much the same way as Jim has described below. It's not a matter of resignation, losing faith, or giving up. It's a matter of release into the reality of a sovereign purpose that is currently beyond our understanding. But, confident faith leads us through the twilights of not knowing and not understanding. Because God does not recklessly squander His personal resources, He bestows abundant faith and "giveth more grace" when the time is right and the need is there. This is the time, and this is the need, . . . . and He has lavishly supplied.

We ask you for your continued prayer at all cost. All of us need that now more than ever. As you pray for the things Jim and Deanna mention below, also pray . . .

+ That the two of us will be sustained,

+ That we will know what to do about when to return to the States,

+ That we will be able to continue an effective ministry here some 6,000 miles away from our kids,

+ That we will be able to sufficiently minister to our family back home, and

+ That God will see the entire family through this pilgrimage with ever increasing faith and increasingly abundant grace. Our four girls are very close to each other; our grandchildren are very close to each other as cousins. In many ways, our family characterizes the body of Christ ---- when one member rejoices, we all rejoice; when one member weeps, we all weep. We've had our share of both over the years.

Jo Ann and I hope that, in the process of reading these excerpts below, you will be awed and humbled by the spiritual strength and depth you discover in the lives of Jim and Deanna. Their faith is not superficial or sensational; it is rock solid and unwavering. You will wish you lived at that level of faith, if you do not.

On a side note before you read on, we cannot say enough about our missionary colleagues here on the field who have encouraged and loved us. They are blessings beyond description.

Also, we are progressing well with our dental work; Jo Ann is about done, and I've got several more appointments yet. As I write, I sit here with a very strange formation of a smile on my face.

Finally, you will be pleased to know that, from the IMB side, a final decision has been made regarding our future. We have been approved for an extension through December, 2005, maintaining a strong presence at the church as the transition to non-IMB pastoral personnel continues. I will also become Coordinator for Strategic Prayer Ministry for the city of Kiev and for Kiev Oblast. We will not be working with the university. We'll give more detail next week in our regular monthly report letter.

Now, please take time to read the excerpts from Jim's and Deanna's notes to us last night. If you so chose, there is a phone number where you could call. Again, their e-mail is prov2525@socket.net. Even if they don't know you, they'd love to hear from you. Just tell them who you are, and that you're part of our prayer team.

We love you all.

Bob and Jo Ann

--------------------------

From Jim:

The Final Genetics tests are back and they show Nicole has a condition called Mosaic Trisomy 18. 1 in 6000 children have this same condition; instead of having 2 #18 chromosomes in each cell (this is normal) Nicole has 3 in each cell. The Mosaic part means that not all of her cells are affected. The initial report said that 55% percent of her cells were affected. The final report reveals that 92% of her cells are affected.

Unless God performs a miracle on a genetic level (and He could) this is, realistically, a terminal diagnosis --but no one can really tell us when. 30-50% of children with Trisomy 18 do not survive their first month. Only 10% survive their first year. Less than 1% survive much beyond that and suffer severe mental retardation.

The Genetic Doctor says, though, that if she survives long enough, she will recognize family members, smile, etc - like a normal kid would - but later in development for Nicole. However, she will not likely ever walk or talk and will likely always be small and suffer from numerous physical problems. She may have seizures and her heart defects and other physical abnormalities could pose problems. Children with Trisomy 18 are also especially prone to pneumonia and other infections.

So. in addition to dealing with the emotions of all this, we must make some decisions re: her future care. If she recovers sufficiently, do we take her home? What about Michael and JoyLinn. do we "subject" them to the stress of caring for her at home? (Seizures, resuscitations, CPR, the potential of her passing away in the house.) Would she be "safer" at the hospital? . . . . (doctors assured us this was not a big deal, that she would probably actually be safer at home!) Do we ask doctors to treat her heart condition, knowing that eventually something will likely catch up to her?

As you might imagine, we are quite overwhelmed at this moment. But, again, remarkably in my mind anyway, our faith won't move. We still serve a grand God who loves us and especially Nicole more than we can ever know this side of eternity. He still has the power to heal at a genetic level. His Word is true - my family is complete and His heart will be victorious through this. My emotions at the moment wonder how and why - but I refuse to hold the God I have known for 25 years and the God revealed by His Word "hostage" to this specific circumstance. We will Walk WITH Jesus even through this tremendous grief.

I'm not sure how to ask you to pray right now. [Jim then listed the following:]

+ We are grieving and need your support in that.

+ There are countless decisions to make - and we need His wisdom. . . .

+ Pray for as long a life as would be fruitful. . . .

+ The most current issues are: the heart and the liver. Her heart, of course, has defects - and the potential for heart failure is greatest for about the next week or two.

+ There is a new issue involving her liver; it is not functioning properly right now, but they don't know why.

+ There's also an issue with blood platelets that they don't yet understand.

+ Doctors here seem to believe that we MAY be able to take her home and have as normal a life as we can for as long as we can. with midnight feedings (albeit through a tube) and diaper changings and smiles and coos and drool and all that other good stuff. We want as many of those "fruitful" times as possible. So pray for that.

They assure us that MOST of the potentially life-threatening problems [that] she is likely to develop, over the course of however long her life is, will be gradual. . . .

And, as I mentioned earlier, God could still heal her on a genetic level . . . . "If You can." as a father said to Jesus of his own child, is not a big thing for us. Of
course He can. it's just a question of His will.

Once again, I find myself out of words.. for lots of reasons. We love you all.

Walk WITH Jesus,

Jim and Deanna
c/o Ronald McDonald House
3450 Park Avenue
Room 9
St. Louis, MO 63104
314-773-1100 x. 409 (and we have "voice mail" if we're not in the room)

---------------------------------

Deanna's Remarks:

Even heart failure would be gradual and can be treated initially with medication and/or surgery. Either option would be dependant on if we chose to prolong the
inevitable or not. There is nothing that we can do to extend her life beyond what her condition mandates. However, choosing not to put her through things like heart surgery, etc. would shorten her time - but give us more time with her at home rather than at the hospital. That's the type of hard decisions we'll have to make at some point. Right now, as long as she doesn't suffer heart failure in the next few weeks, then it could be several months before that is to happen. Basically, that's how trisomy 18 patients die - either eventual heart failure or pneumonia.

We're still at peace. We are choosing to celebrate and enjoy her life right now while we have her rather than grieving or mourning the loss somewhere in the future. We know there will be plenty of that in the future, but we don't want the future time of grieving to be filled with regret for not enjoying her while we can.

-------------------------------

Bob Tolliver
IBC - Hope4Kyiv
lifeunlimited@pobox.com
Subscribe to "Hope4Kyiv" letter
  --  To unsubscribe, send ANY message to: hope4kyiv-unsubscribe@welovegod.org  

Posted by: lifeunlimited <lifeunlimited@...>

Dear Friends, Family, In-Pact Partners, and Colleagues:

We finally have a definitive report on Nicole Grace's condition. Up to now it has been assumptions and probabilities without documentation, but now the documentation is in. Apart from a major miracle of God, Nicole Grace's tenure on this earth will be short. This is not part of the plan, but this is the way it is happening. It was our plan that Deanna would have a healthy and safe pregnancy resulting in the birth of another healthy little grand daughter. It was our plan that we would enjoy long years of being grandparents to twelve wonderful "Vnookie's" instead of eleven. It was our plan that our children and grand children would not have to carry the burden of pain, suffering, grief and sorrow, at least not at such an early age.

That is not what has happened. We will be blessed with twelve living grand children only for a short time; then it will be back to eleven.

Last week in my "Shoulder To Shoulder" letter, I wrote about God's "fingerprints". An amazing number of people wrote back in response. Even today we continue seeing God's fingerprints. For example, in an unexplainable and uncanny way, Jim and Deanna, along with the two of us, began to experience an unusual peace of heart over the situation at almost the very same time . . . . within hours or less of each other. We began to anticipate that the final report was not going to be a good one from our perspective. We were right.

While our praying continues unequivocally to be for healing and restoration, God has released us to also pray in much the same way as Jim has described below. It's not a matter of resignation, losing faith, or giving up. It's a matter of release into the reality of a sovereign purpose that is currently beyond our understanding. But, confident faith leads us through the twilights of not knowing and not understanding. Because God does not recklessly squander His personal resources, He bestows abundant faith and "giveth more grace" when the time is right and the need is there. This is the time, and this is the need, . . . . and He has lavishly supplied.

We ask you for your continued prayer at all cost. All of us need that now more than ever. As you pray for the things Jim and Deanna mention below, also pray . . .

+ That the two of us will be sustained,

+ That we will know what to do about when to return to the States,

+ That we will be able to continue an effective ministry here some 6,000 miles away from our kids,

+ That we will be able to sufficiently minister to our family back home, and

+ That God will see the entire family through this pilgrimage with ever increasing faith and increasingly abundant grace. Our four girls are very close to each other; our grandchildren are very close to each other as cousins. In many ways, our family characterizes the body of Christ ---- when one member rejoices, we all rejoice; when one member weeps, we all weep. We've had our share of both over the years.

Jo Ann and I hope that, in the process of reading these excerpts below, you will be awed and humbled by the spiritual strength and depth you discover in the lives of Jim and Deanna. Their faith is not superficial or sensational; it is rock solid and unwavering. You will wish you lived at that level of faith, if you do not.

On a side note before you read on, we cannot say enough about our missionary colleagues here on the field who have encouraged and loved us. They are blessings beyond description.

Also, we are progressing well with our dental work; Jo Ann is about done, and I've got several more appointments yet. As I write, I sit here with a very strange formation of a smile on my face.

Finally, you will be pleased to know that, from the IMB side, a final decision has been made regarding our future. We have been approved for an extension through December, 2005, maintaining a strong presence at the church as the transition to non-IMB pastoral personnel continues. I will also become Coordinator for Strategic Prayer Ministry for the city of Kiev and for Kiev Oblast. We will not be working with the university. We'll give more detail next week in our regular monthly report letter.

Now, please take time to read the excerpts from Jim's and Deanna's notes to us last night. If you so chose, there is a phone number where you could call. Again, their e-mail is prov2525@socket.net. Even if they don't know you, they'd love to hear from you. Just tell them who you are, and that you're part of our prayer team.

We love you all.

Bob and Jo Ann

--------------------------

From Jim:

The Final Genetics tests are back and they show Nicole has a condition called Mosaic Trisomy 18. 1 in 6000 children have this same condition; instead of having 2 #18 chromosomes in each cell (this is normal) Nicole has 3 in each cell. The Mosaic part means that not all of her cells are affected. The initial report said that 55% percent of her cells were affected. The final report reveals that 92% of her cells are affected.

Unless God performs a miracle on a genetic level (and He could) this is, realistically, a terminal diagnosis --but no one can really tell us when. 30-50% of children with Trisomy 18 do not survive their first month. Only 10% survive their first year. Less than 1% survive much beyond that and suffer severe mental retardation.

The Genetic Doctor says, though, that if she survives long enough, she will recognize family members, smile, etc - like a normal kid would - but later in development for Nicole. However, she will not likely ever walk or talk and will likely always be small and suffer from numerous physical problems. She may have seizures and her heart defects and other physical abnormalities could pose problems. Children with Trisomy 18 are also especially prone to pneumonia and other infections.

So. in addition to dealing with the emotions of all this, we must make some decisions re: her future care. If she recovers sufficiently, do we take her home? What about Michael and JoyLinn. do we "subject" them to the stress of caring for her at home? (Seizures, resuscitations, CPR, the potential of her passing away in the house.) Would she be "safer" at the hospital? . . . . (doctors assured us this was not a big deal, that she would probably actually be safer at home!) Do we ask doctors to treat her heart condition, knowing that eventually something will likely catch up to her?

As you might imagine, we are quite overwhelmed at this moment. But, again, remarkably in my mind anyway, our faith won't move. We still serve a grand God who loves us and especially Nicole more than we can ever know this side of eternity. He still has the power to heal at a genetic level. His Word is true - my family is complete and His heart will be victorious through this. My emotions at the moment wonder how and why - but I refuse to hold the God I have known for 25 years and the God revealed by His Word "hostage" to this specific circumstance. We will Walk WITH Jesus even through this tremendous grief.

I'm not sure how to ask you to pray right now. [Jim then listed the following:]

+ We are grieving and need your support in that.

+ There are countless decisions to make - and we need His wisdom. . . .

+ Pray for as long a life as would be fruitful. . . .

+ The most current issues are: the heart and the liver. Her heart, of course, has defects - and the potential for heart failure is greatest for about the next week or two.

+ There is a new issue involving her liver; it is not functioning properly right now, but they don't know why.

+ There's also an issue with blood platelets that they don't yet understand.

+ Doctors here seem to believe that we MAY be able to take her home and have as normal a life as we can for as long as we can. with midnight feedings (albeit through a tube) and diaper changings and smiles and coos and drool and all that other good stuff. We want as many of those "fruitful" times as possible. So pray for that.

They assure us that MOST of the potentially life-threatening problems [that] she is likely to develop, over the course of however long her life is, will be gradual. . . .

And, as I mentioned earlier, God could still heal her on a genetic level . . . . "If You can." as a father said to Jesus of his own child, is not a big thing for us. Of
course He can. it's just a question of His will.

Once again, I find myself out of words.. for lots of reasons. We love you all.

Walk WITH Jesus,

Jim and Deanna
c/o Ronald McDonald House
3450 Park Avenue
Room 9
St. Louis, MO 63104
314-773-1100 x. 409 (and we have "voice mail" if we're not in the room)

---------------------------------

Deanna's Remarks:

Even heart failure would be gradual and can be treated initially with medication and/or surgery. Either option would be dependant on if we chose to prolong the
inevitable or not. There is nothing that we can do to extend her life beyond what her condition mandates. However, choosing not to put her through things like heart surgery, etc. would shorten her time - but give us more time with her at home rather than at the hospital. That's the type of hard decisions we'll have to make at some point. Right now, as long as she doesn't suffer heart failure in the next few weeks, then it could be several months before that is to happen. Basically, that's how trisomy 18 patients die - either eventual heart failure or pneumonia.

We're still at peace. We are choosing to celebrate and enjoy her life right now while we have her rather than grieving or mourning the loss somewhere in the future. We know there will be plenty of that in the future, but we don't want the future time of grieving to be filled with regret for not enjoying her while we can.

-------------------------------

Bob Tolliver
IBC - Hope4Kyiv
lifeunlimited@pobox.com
Subscribe to "Hope4Kyiv" letter

  --  To unsubscribe, send ANY message to: hope4kyiv-unsubscribe@welovegod.org