Continuing prayers for Piper

[Frank Lee]

Posted on FB by Arellia, Piper's mother.

Piper has surgery today to have her port placed for stem cell harvest. This is a temporary port different from her current port. The current one is semi-permanent. It stays under skin all the time and will only be removed when treatment is completed. T is a one way port. We either push things in or draw things out and not at the same time. This new port is anyway port that is temporary. She’ll have it placed today and be stitched to keep it in. Two tubes will stick out of her neck. Starting tomorrow, she’ll be hooked to a machine that draws blood out of one tube, runs it through the machine to separate the stem cells from the rest of the blood, and the non-stem cell blood will be pushed back in to her body through he other tube in her neck. This will last 4-5 hours per day for 4 days. Then, they’ll pull out there stitches, remove the port, and discharge her.

Piper is nervous to have a new port. The rest of us are nervous to see tubes sticking out of her neck.

Pray for a safe surgery, steady surgeon hands, and continued faith that God works through all things and walks ahead of us. I’ve been forgetting that easily. God is good.

 

[Helen]

Posted on FB by Arellia, Piper's mother.

Piper has surgery today to have her port placed for stem cell harvest. This is a temporary port different from her current port. The current one is semi-permanent. It stays under skin all the time and will only be removed when treatment is completed. T is a one way port. We either push things in or draw things out and not at the same time. This new port is anyway port that is temporary. She’ll have it placed today and be stitched to keep it in. Two tubes will stick out of her neck. Starting tomorrow, she’ll be hooked to a machine that draws blood out of one tube, runs it through the machine to separate the stem cells from the rest of the blood, and the non-stem cell blood will be pushed back in to her body through he other tube in her neck. This will last 4-5 hours per day for 4 days. Then, they’ll pull out there stitches, remove the port, and discharge her.

Piper is nervous to have a new port. The rest of us are nervous to see tubes sticking out of her neck.

Pray for a safe surgery, steady surgeon hands, and continued faith that God works through all things and walks ahead of us. I’ve been forgetting that easily. God is good.

Wow...what a weight of stress upon her.

Yes, praying for Father to send many angels in attendance and His healing hand upon her.
He is the God of the impossible!

 

[Heart2Soul]

Posted on FB by Arellia, Piper's mother.

Piper has surgery today to have her port placed for stem cell harvest. This is a temporary port different from her current port. The current one is semi-permanent. It stays under skin all the time and will only be removed when treatment is completed. T is a one way port. We either push things in or draw things out and not at the same time. This new port is anyway port that is temporary. She’ll have it placed today and be stitched to keep it in. Two tubes will stick out of her neck. Starting tomorrow, she’ll be hooked to a machine that draws blood out of one tube, runs it through the machine to separate the stem cells from the rest of the blood, and the non-stem cell blood will be pushed back in to her body through he other tube in her neck. This will last 4-5 hours per day for 4 days. Then, they’ll pull out there stitches, remove the port, and discharge her.

Piper is nervous to have a new port. The rest of us are nervous to see tubes sticking out of her neck.

Pray for a safe surgery, steady surgeon hands, and continued faith that God works through all things and walks ahead of us. I’ve been forgetting that easily. God is good.

Praying right now that she will have a positive outcome and a speedy recovery in Jesus Name!

 

[Nancy]

Posted on FB by Arellia, Piper's mother.

Piper has surgery today to have her port placed for stem cell harvest. This is a temporary port different from her current port. The current one is semi-permanent. It stays under skin all the time and will only be removed when treatment is completed. T is a one way port. We either push things in or draw things out and not at the same time. This new port is anyway port that is temporary. She’ll have it placed today and be stitched to keep it in. Two tubes will stick out of her neck. Starting tomorrow, she’ll be hooked to a machine that draws blood out of one tube, runs it through the machine to separate the stem cells from the rest of the blood, and the non-stem cell blood will be pushed back in to her body through he other tube in her neck. This will last 4-5 hours per day for 4 days. Then, they’ll pull out there stitches, remove the port, and discharge her.

Piper is nervous to have a new port. The rest of us are nervous to see tubes sticking out of her neck.

Pray for a safe surgery, steady surgeon hands, and continued faith that God works through all things and walks ahead of us. I’ve been forgetting that easily. God is good.

That is an awful lot to go through. I pray that Piper, and you and fam. will remember that peace that surpasses all understanding...and that God will ease the discomfort of this procedure for Piper and find favor with the surgeons by blessing their efforts. Amen ♥

 

[amadeus]

Also praying!

 

[Frank Lee]

Update by Piper's mom, Arellia. 9/16/18

This week was long. We discharged yesterday - earlier than planned - because we could get enough stem cells. Based on how she’s been acting, we would thought it’d be a cinch to get more than enough. Instead, we couldn’t get enough for even one transfusion. Many times they get enough for 5 transfusions. So, they cut the process short, pulled out her new port and deaccessed the other, and sent us home.

This was disappointing, because the process is long and painful, and because it was an insurance policy. Stem cells weren’t going to cure her cancer. They would’ve been used to help her should chemo be working but her bone marrow couldn’t take anymore.

But, when I step away from the emotions surrounding it, there was no other time to do it. We couldn’t do it when we started, because the tumor was too aggressive. Not during the first protocol - it was already too hard on her body. And, we tried after the first round of this protocol, and it wasn’t working out. So, this was our time. We did or best and most logical, and now we keep going.

Added to this was the port pull out. T was awful. We have her some calm down meds before hand, but it didn’t matter. She screamed the entire time. And, while that in and of itself is very stressful, not knowing if your child is really in pain or if it’s just fear or what adds to it. I hate it for her. I dread access and deaccess like she does since I can’t do anything to help her. She doesn’t hardly listen anymore to hear my voice over the fear. And, it seems she doesn’t really believe me that breathing deeply helps her cope with the pain. It’s just rough.

Lastly, yesterday was our oncologist’s last day. I don’t know if Piper cares all that much. After all, those doctors are the ones mom has to talk to for so long so that Piper can’t get a word in . But, our doctor had been tremendous. I’m so glad she was over or care to begin with. God knew I needed someone like her as I transitioned to this life. And, while I wish her the best, and I understand the need to move on, I already miss her, and I’m trying not to be scared that she won’t be the lead in our case.

All that said, my mind continues to go back to the scripture Psalm 146:3-4

Psalm 146:3–4 (ESV): Put not your trust in princes [doctors],
in a son of man, in whom there is no salvation.
4 When his breath departs, he returns to the earth;
on that very day his plans perish.

This is a reminder that my doctor and the stem cell harvest process were never our salvation or cure. Of stem cells don’t come through, it is by His direction. If my doctor leaves, He is still directing this. It’s hard to say it and hard to feel it, but He is good. He knows best. I’ve learned that much this far.

However, please keep praying about the following:
1) healing
2) no mets - not in her lungs, her brain. Pray it peaks away from her spine and continues to die
3) the transition to a new doctor - change is hard, and I really avoid it, and I want to meet it with grace and faith. Pray for a good relationship with the new doctor and that the lead we’ve made this far won’t be lost.
4) Danny’s back - it went out a couple weeks ago. While it’s better enough not to have in bed for a week, it’s still fragile. It’s exhausting.
5) Stress Management - I can see in myself that the changes are taking a toll- insomnia, depression, anger, easily overwhelmed, impatience, disorganized, unfocused.
6) health for the rest of the family - our immediate family need to be healthy. But, we have close family members dealing with some large health problems.

Finally, my faith seems weak right now. I try to sing my songs and pray, and many times, it feels like the energy isn’t there and the faith. Many times, the faith is simply singing or praying His goodness. It doesn’t come from this feeling of faith if you will. It’s just saying it in an effort to continue trusting Him for her healing and our strength. So, I say in faith, He is good. I don’t have to see it to know it or believe it or say it. But keep praying anyway.

 

[Helen]

Oh wow...what words can a person use.
Praise God that we can allow the Holy Spirit to bypass our natural mind and natural reasonings... and pray in His language of the Spirit.

Bless their hearts..yes..we lift them up to The One who sees and knows ALL. ✟

 

[Nancy]

Update by Piper's mom, Arellia. 9/16/18

This week was long. We discharged yesterday - earlier than planned - because we could get enough stem cells. Based on how she’s been acting, we would thought it’d be a cinch to get more than enough. Instead, we couldn’t get enough for even one transfusion. Many times they get enough for 5 transfusions. So, they cut the process short, pulled out her new port and deaccessed the other, and sent us home.

This was disappointing, because the process is long and painful, and because it was an insurance policy. Stem cells weren’t going to cure her cancer. They would’ve been used to help her should chemo be working but her bone marrow couldn’t take anymore.

But, when I step away from the emotions surrounding it, there was no other time to do it. We couldn’t do it when we started, because the tumor was too aggressive. Not during the first protocol - it was already too hard on her body. And, we tried after the first round of this protocol, and it wasn’t working out. So, this was our time. We did or best and most logical, and now we keep going.

Added to this was the port pull out. T was awful. We have her some calm down meds before hand, but it didn’t matter. She screamed the entire time. And, while that in and of itself is very stressful, not knowing if your child is really in pain or if it’s just fear or what adds to it. I hate it for her. I dread access and deaccess like she does since I can’t do anything to help her. She doesn’t hardly listen anymore to hear my voice over the fear. And, it seems she doesn’t really believe me that breathing deeply helps her cope with the pain. It’s just rough.

Lastly, yesterday was our oncologist’s last day. I don’t know if Piper cares all that much. After all, those doctors are the ones mom has to talk to for so long so that Piper can’t get a word in . But, our doctor had been tremendous. I’m so glad she was over or care to begin with. God knew I needed someone like her as I transitioned to this life. And, while I wish her the best, and I understand the need to move on, I already miss her, and I’m trying not to be scared that she won’t be the lead in our case.

All that said, my mind continues to go back to the scripture Psalm 146:3-4

Psalm 146:3–4 (ESV): Put not your trust in princes [doctors],
in a son of man, in whom there is no salvation.
4 When his breath departs, he returns to the earth;
on that very day his plans perish.

This is a reminder that my doctor and the stem cell harvest process were never our salvation or cure. Of stem cells don’t come through, it is by His direction. If my doctor leaves, He is still directing this. It’s hard to say it and hard to feel it, but He is good. He knows best. I’ve learned that much this far.

However, please keep praying about the following:
1) healing
2) no mets - not in her lungs, her brain. Pray it peaks away from her spine and continues to die
3) the transition to a new doctor - change is hard, and I really avoid it, and I want to meet it with grace and faith. Pray for a good relationship with the new doctor and that the lead we’ve made this far won’t be lost.
4) Danny’s back - it went out a couple weeks ago. While it’s better enough not to have in bed for a week, it’s still fragile. It’s exhausting.
5) Stress Management - I can see in myself that the changes are taking a toll- insomnia, depression, anger, easily overwhelmed, impatience, disorganized, unfocused.
6) health for the rest of the family - our immediate family need to be healthy. But, we have close family members dealing with some large health problems.

Finally, my faith seems weak right now. I try to sing my songs and pray, and many times, it feels like the energy isn’t there and the faith. Many times, the faith is simply singing or praying His goodness. It doesn’t come from this feeling of faith if you will. It’s just saying it in an effort to continue trusting Him for her healing and our strength. So, I say in faith, He is good. I don’t have to see it to know it or believe it or say it. But keep praying anyway.

Prayers for peace, strength, comfort for all involved. Prayers for Piper that she will be delivered from pain or discomfort. God IS good, always.
God Bless you and your family.
"And he spake a parable unto them to this end, that men ought always to pray, and not to faint..." Luke 18:1

 

[Frank Lee]

We wept over this today, prayed. I'm simple and can't understand why the little ones are so afflicted. God knows.

 

[amadeus]

@Frank Lee
I am continuing to pray for everyone affected by this situation that God will grant each one what is needed to go through what must be gone through. I pray that God give each of you strength in Him.

Give God the glory in any case.

 

[Mayflower]

Keeping y'all in prayer.

 

[Frank Lee]

Piper's mom shared this video on Facebook.

Pray for Piper