Shaken up
Have you every watched Moana? There is a scene where moana is after Maui. Well in the middle of the night as she is voyaging there is a storm, she ask the water to help. She wakes up ship wrecked on an island and is upset, because she believes she is off course. She realizes she landed on the island where Maui has been.
Well let me give you a better picture. The disciples sitting in a boat, and there is a bad storm. All the while Jesus is asleep. WHAT! The disciples in fear of drowning awoke Jesus.
“And they went and woke him, saying, "Save us, Lord; we are perishing." And he said to them, "Why are you afraid, O you of little faith?" Then he rose and rebuked the winds and the sea, and there was a great calm. And the men marveled, saying, "What sort of man is this, that even winds and sea obey him?"”
Matthew 8:25-27
Since Emerson was diagnosed I have held on to the fact that Jesus has been my anchor. I have allowed the storm of leukemia to toss and turn but for my faith in Jesus not to waiver. Well I have to be honest with you my anchor has been shaken up quite a bit today.
Elvin and I were asked to meet with Dr. V this morning. Now I don’t have to tell you that we were pretty nervous going into the clinic today.
I will do my best to explain the new development without it being too much.
✅Mac’s numbers are good, with no need for transfusion. The blast that I had mentioned in the previous post () were not present, at least not in the present count. We should have more information by end of day.
✅There was some specific testing done during Emerson relapse on his blood.
✳️Fluorescence in situ hybridization (FISH) is a test that “maps” the genetic material in a person's cells. This test can be used to visualize specific genes or portions of genes.
This was done when he was first diagnosed back in November 2019.
Remember in Mac’s last post, Dr. V had discussed with me how high risk Emerson leukemia is. I mean his presenting: eyes (@ birth), enlarged testicle (@5 weeks), groin mass (@4 months).
So today we learned that basically there were additional mutations found with FISH.
Not good ☹️ let me be honest and say that his AML has been high risk since the beginning.
At this time we have been given two options. Now before I dive into them, let me be clear in stating that these options will be based around a bone marrow biopsy.
WARNING: please pray before reading
(+) biopsy with presence of leukemia: not good. Mac just received chemo, pretty strong one that is given with relapse. Though he has done exceptional well despite the side effects of chemo in general.
Not much of an option for further chemo. Comfort care or hospice may be a choice.
✳️ Hospice care is a type of health care that focuses on the palliation of a terminally ill patient's pain and symptoms and attending to their emotional and spiritual needs at the end of life. Hospice care prioritizes comfort and quality of life by reducing pain and suffering.
(-) biopsy, or very small amount of leukemia. This is what we desire! This is what we pray for.
✳️Bon Marrow transplant. Now the change would be that I would be the donor. Reason for this is that there would be a need for two procedures, and Dr. V would much rather not put Manny through that. Prior to the transplant Emerson would have another round of chemo to condition his bone marrow. Basically wipe out his current cells so that the new bone marrow will incorporate itself into Mac’s immune system and mount a change that does not include any leukemic cells.
✳️Hospice, could still be an option. As with the complexity of his AML, the transplant may not work and he could still relapse.
Now take that in. Elvin and I still are. It’s hard to be given an option in which we as the parents have a decision to make that can alter Emerson’s life. The reality is, we do not desire to doubt anything once a decision has been made.
Our first thought was yes transplant, but as I have explained it all depends on the bone marrow.
Jesus, today has not been easy. The news we received was devastating to say the least. Though you have given us the ability to feel emotion, does not mean we do not trust in you. We love Emerson so much, but we know that you have loved him before we knew him. Lord may you be glorified through his life. We pray that the testing proves good results. We do not desire for any further suffering on Mac’s behalf. In Jesus name, Amen
So Father, we pray for a negative biopsy and for a successful bone marrow transplant and permanent remission. In JESUS'S name I pray. AMEN
ReplyDeletePrayers for good results and God's grace to get you through.
ReplyDeleteMaLou Rachal.
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ReplyDeleteJoining you all in prayer. I saw your story because we are friends of the Rices. This word has been on my heart today and I wanted to share it with you as an encouragement. "For God alone my soul waits in silence; from him comes my salvation. He alone is my rock and my salvation, my fortress; I shall not be greatly shaken.........On God rests my salvation and my glory; my mighty rock, my refuge is God. Trust in him at all times, O people; pour out your heart before him; God is a refuge for us." -Psalm 62:1-2 , 7-8
ReplyDeleteMy God in heaven, I pray that You move on Baby Mac 's behalf in a MIRACULOUS AND MIGHTY way as only You can. I pray that it is Your Will to heal this baby from the top of his head to the soles of his feet. Father, I pray that you continue to comfort, keep, and strengthen my sister and brother as that make the best decision that they can on how to proceed. I know that there IS POWER AND HEALING in the name of JESUS. I have witnessed this healing power time and time again. Father God I pray that you PLEASE REBUKE AND BIND this spirit of infimity that has affected so many of my family members. We will continue to TRUST YOU God and we will continue to SPEAK LIFE!!!!! Please hear our prayers Lord...AMEN!!!!!
ReplyDeletePraying for you and your family. God will guide you through this..... Praying daily for your baby...
ReplyDeletePraying for Emerson. God will give you strength and wisdom.
ReplyDeletePraying for you all from Knoxville. Praying for healing! Praying for that peace that passes allllll understanding.
ReplyDeletePraying Psalm 102:1-2
Hear my prayer, O Lord!
And let my cry for help come to You.
Do not hide Your face from me in the day of my distress;
Incline Your ear to me;
In the day when I call answer me quickly.
Psalms 73: (23) Nevertheless, I am always with you;
ReplyDeleteyou hold my right hand.
(24) You will guide me with your advice; and afterwards, you will receive me with honor.
Psalms 73: (25) Whom do I have in heaven but you?
ReplyDeleteAnd with you, I lack nothing on earth.
(26) My mind and body may fail; but God is the rock for my mind and my portion forever.
(27) Those who are far from you will perish; you destroy all who adulterously leave you.
(28) But for me, the nearness of God is my good;
I have made Adonai Elohim my refuge, so that I can tell of all your works.
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