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Discussion in 'Prayer and Religion' started by clawmute, Jan 11, 2018.
Continued prayers for all of you!
Meant to post this picture but got distracted. Pipers little wagon.
Me too. Haven't forgot about her.
Piper update. Surely the Lord God will heal and deliver this child. The world is full of death and evil we pray oh Lord that you will in your mercy deliver this child kill this accursed cancer and give her her life. Amen
It’s about time for a long post isn’t it?
Round 16/25 of radiation is tomorrow at 630am. I spoke with the doctor last week, and the recommendation is for us to go ahead with round 5 chemo since radiation won’t end until the end of next week. Basically, just don’t give it a break. Go ahead with another round and get the scans after round 5 chemo sets in (first week of May I’m guessing).
After this, the doctors will have a conference again. This will be all oncologists and surgeons including adult surgeons (since you don’t want I do a surgery like this more than once) to review her scans and see what to do next.
If scans show tumor death, they’ll review surgery and see what risks we’re actually looking at. This will be a major surgery most likely through her abdomen. She’ll need her sacrum replaced completely. I don’t know what the plan is for her vertebrae that are pretty lacey at this point. They’ll be reviewing the risks involved including death, paralysis, or loss of bladder/bowel control among other things including the potential to actually get all of the tumor out.
If scans don’t show tumor death, surgery is still on the table, but obviously that would include additional risk.
Regardless of whether she has surgery after chemo and radiation, we’re still looking at another 3 rounds of chemo - either to encourage tumor death or to catch anything that wasn’t caught during a surgery.
Piper is still doing well though her appetite is still very poor. I think she’s lost some weight. Last week, we increased her appetite stimulant. We’ll see how things go this week.
She’s still in generally good moods. She’s not walking a whole lot, but she is doing a fair amount of self-initiated crawling.
I happened upon a picture of her back in October as compared to now, and there is a stark difference due to a growth spurt! This girl has gotten long! That does make her look thinner as well.
It’s difficult to see her thin with eyes sunken and dark circles. It’s hard to feel her little legs that have hardly any muscle tone and see her skin wrinkle sometimes when she moves because of it. She’s lost most her eyelashes from the daily chemo she takes. That’s a little hard but not as hard as it was to see her lose all her hair.
Basically, most days are our new normal, but some days are harder, because we see the details of the changes.
I’ve realized I haven’t really been praying or reading my Bible nearly as much as I thought. I think about her health all the time; I say little prayers of requests for healing all through the day, but really I worry. Without realizing it, I fell into this weird trap/lie of worrying which disguised itself as prayer? Thinking somehow I’m praying all day about the matter and trusting Him with it, but when I really stop and think about the day, I haven’t been. I’ve been worrying about it not meditating on His promises, not delving into His word to find more, not fully giving my worst fear over to the only One who can actually do anything about it! That seems ridiculous, but it’s not the first time I’ve done it!
All I can say is I have to do better. You know better so you do better. God is good, so He will guide me.
Please pray for the following:
1) tumor death
2) continued good response to chemo/radiation
3) organ protection (radiation and chemo both damage those little organs)
4) wisdom for what to do with surgery
5) discernment for us in all matters of healthy and family
6) rest (I’m so tired)
7) no skin damage from radiation (not darkening, no redness. It’s started a little and I want it gone!)
8)patience sometimes I even snip at piper
9) Lincoln to continue to cope well
10) strength and faith.
And on that last one, I need a lot of prayer. The longer I go, the less faith I feel I have. I don’t want that. I make a commitment to dwell on His promises more. And, I need help to believe them. I’ve said before I don’t believe name it and claim it. I feel like there is something I’m missing. I see the verses of “have faith like a mustard seed and move mountains” and “ask and you will receive” and “call the elders to pray over you so you mgt be healed”. They all seem so simple right?! But, then I look and see that Jesus asked for the cup to be taken from Him, and it wasn’t! It wasn’t! So, I am missing a piece of understanding . I don’t lack the faith that He is good. I don’t lack the faith that He is capable. I just lack a piece of the puzzle to know how to pray for my daughter. So, please pray for me. When I don’t have what I think is the right kind or the right amount of faith, I go back to God is good and that I believe He will give me the answer I need, the amount of faith I need or explanation I need to know how to believe or pray or trust or praise. I’m seeking it. He is good. Just please pray with me.
I am still praying for Piper & her family...& will continue to.
Just prayed for that sweet family and that brave little girl!
You got it Frank!
Round 5 of chemo finished up last night. We'll head home today. Final round of radiation is tomorrow - woo hoo!
Piper is in a good mood and has been asking to go around the hospital, which is an improvement for a girl who didn't even want to leave her room.
Please pray for:
1) tumor death
2) blood electrolyte balance - we added potassium to her fluids. You can take potassium in pill form, but it's rough on the stomach.
3) protection against infection since neutrophils are on their way down
4) organ protection from chemo/radiation
Scans will happen in 2-3 weeks, and we'll go from there on round 6 chemo or surgery. Thanks everyone for praying!
Bless her heart. Bless all your family. Strength is found through Our Savior. My prayers are with all of y’all
Love the wagon!!
Praying for that sweet girl.
Still praying for this little girl, & her family.
Praying every day for Piper and her family.
I wanted to post this update From Piper's mom.
From Arellia Spencer Williams (Pipers mother)
Looking for any doctors who have performed a replacement of a sacrum. This is highly specialized and not many have been done. Please share this post. It has been done, but as far as I can tell, it’s only been in adults. We’re looking for a doctor who has performed it in a child or who has performed it in an adult and thinks s/he might be able to do it on a child.
Replacing the sacrum is very risky, and we’re hoping to do it without sacrificing her ability to walk. Any help is appreciated.
PLEASE SHARE!! Anyone can contact me through this page or personally (Arellia Spencer Williams)
PS: from Frank,
a triangular bone in the lower back formed from fused vertebrae and situated between the two hipbones of the pelvis.
I found a diagram of the area involved so am adding it.
I pray the Lord Jesus heal Piper and speak death to this cancerous invasion of her little body. Life and wholeness and complete restoration to Piper who is not even a mile down the road of life yet.
Berean Study Bible
But Jesus said, "Let the little children come to Me, and do not hinder them! For the kingdom of heaven belongs to such as these.
Berean Study Bible
22A synagogue leader named Jairus arrived, and seeing Jesus, he fell at His feet
23and pleaded with Him urgently, “My little daughter is near death. Please come and place Your hands on her, so that she will be healed and live.”
Pipers mom Arellia posted some good news in today's update.
MRI FINDING . . .
"Compared to the previous study there has been SIGNIFICANT DECREASE IN EXTENT AND VOLUME of the tumor which is now extremely heterogeneous [which means "diverse in character or content"] and T2 hyperintense [a term to indicate the MRIs measurement of water within the tumor] consistent with decreasing solid tumor as well as ongoing tumor necrosis (which means TUMOR DEATH)."
I'm word picky, so I can't bring myself to simply pull a section out of the report. But in summary, there is SIGNIFICANT DECREASE IN THE TUMOR! AND, THE SCANS SHOW A TUMOR THAT LOOKS LIKE IT'S DYING!!!
Also, CT of the lungs is clear! (In sarcomas that spread, 90% of the time, they spread to the lungs. Piper's has not spread to her lungs!)
Praise God this morning! Praise Him! Praise Him!
However, please keep praying. The last note says this:
"Still noted is nerve root enhancement in the cauda equina [bundle of nerves that control lower extremities and pelvic organs] a which could be treatment related or possibly leptomeningeal tumor."
On the last MRI, they saw this nerve root enhancement and took it to mean inflammation and not metastases. But, the fact that they put in 'leptomeningeal tumor' as a possibility is concerning. This would be cancer "that has spread from the original tumor to the meninges, the thin layers of tissue that cover and protect the brain and spinal cord, causing the meninges to become inflamed." PRAY AGAINST THIS!
I am so grateful today. So so grateful. I was starting to feel hopeful the last couple weeks, but I was afraid to, because I'm afraid of disappointment. I'm still afraid of that. I'm not one to show excitement about much for fear it's not as good as what I think. But, today, I'm excited and so so humbled and grateful. God is good, as always."
Very glad to hear this report. Still praying for Piper's healing & for her family's strength & faith.