After our late night operation we knew we had further tests to figure out what was causing the extra fluid building up in Kai’s head. A CT scan showed the surgery last night was successful however Kai was not making the turn around they expected so we had another MRI late this afternoon.
The results of this MRI show that in just a little over a week the cancer has metastasized in the back of his brain which is most likely causing him the pain and lethargy. It is difficult to describe what it feels like to see that change. Tomorrow we will talk about options for treatment but the truth is, on paper it’s not going to look good at all. We are faces with deciding what will be the next course of action.
Our son is in pain and seeing how much disease is in his brain and how much he must be feeling, I am blown away by what a tough kiddo he is. And as Shawn wrote the kid is as sharp as a tack – his spirit is in there beneath this broken body. And the kindness he showed to the nurses last night and today – such a sweet sweet soul.. With a dry sense of humor 🙂
I literally collapsed on the floor of the entry to the OR last night just asking why does this have to happen to this innocent boy or really to anyone. No one deserves this. but the truth is several things happened last night that showed me that God is absolutely doing something here I just have no idea what and I hate that it is hurting Kai so much.
I’ve had trouble with gathering my faith in this as I wonder how we can all endure more but today I was convicted that God can absolutely heal Kai. I don’t know if that is his plan but I know he can. So today we celebrated life – Kai was in and out but he wanted to read books so we read lots of books and he even had one of his teachers Ms.Kathy read to him. He asked me to sing songs so now Dell children’s hospital staff in many areas have a story to tell about a deaf mom singing over a CT scan and we talked about all the things he wanted to do. He’s still here. But he is really sick and getting worse. I am having faith that God is wrapping him up in the most perfect hug ever. And yes I am praying for a miracle.
We are so thankful for the staff here and their compassion and all of you who are supporting us every single hour of the day. We need you now more than ever – for Kai. Thank you God for everything be near to us. So so near.
27 Comments on Test Results
Comments are closed.
Aki, I have faith that God is with him every step of the way. He is with all of you. I pray for a miracle and that Kai gets better. Sending millions of hugs and prayers your way. Love you all so much.
Praying praying praying
Praying with you for Kai’s complete healing and all that God is doing through this situation! May He be your strength day and night. Praying peaceful sleep for sweet Kai tonight.
Aki, I just left bible study where I asked the 7 faithful women in my study to cover Kai in prayer. I hate to hear he is in so much pain. What a treasure to read about Kai’s gentle, compassionate spirit. Praying for peace, comfort and wisdom for you all. I prayed the exact same thing for you guys tonight…that God would be so very NEAR to you all in this difficult time. Praying you feel his presence more now than ever.
Everyone is praying for a miracle for precious Kai! Your strength continues to amaze me….and I am praying for you and Shawn to continue to have strength for this fight. I know you must be emotionally exhausted. I love that you have been celebrating his life, and I love that you sang to him during the CT. What a wonderful mother you are! We are here if you need anything at all.
I am furiously praying for your Kai
Aki and Shawn, we are thinking of you, and praying so hard and so often for you all to find peaceful moments.
Praying for a miracle. Praying your precious little guy gets the rest and healing he needs tonight. A million hugs and kisses from Ohio.
I will be praying for a miracle for your sweet boy… Thank you for keeping us updated so that we know how to pray. Sending love, hugs, & prayers. May God comfort you.
Aki and Shawn: I stopped listening to the radio for Lent and how that relates to you is I have spent my time in the car for the last several days praying for you all and for Kai specifically. I pray for healing, comfort, wisdom, cessation of pain, peace, hope, faith. Anything God brings to mind for you all. As you said, God can heal. I don’t know if that is the plan either. I hope so. But as I prayed for Kai today, as I was driving around, I saw him in the hospital in Jesus arms. Your words, “wrapping him up in the most perfect hug ever” was exactly what I saw. I cried when i saw it. I believe Jesus is with him and talking to him and holding him. Kai’s room is filled with Jesus. As you have described, Kai sounds amazing, strong, kind, courageous, and beautiful. And he has a friend with him who is giving him strength. I hope you can continue to feel God’s presence and know that God loves Kai, even though he is allowing this pain.
When we are at our weakest we are closest to God. In the name of Jesus I ask for him to heal Kai. I ask him to give you strength. I ask for him to bring all your family peace. To comfort you. Praying so much for your family!
Praying for your entire family and for healing and peace in Jesus name.
Aki and Shawn your strength is truly one of a kind. Kai is a fighter and such a brave angel. I love you guys very much and am sending hugs your way. You are in my thoughts and prayers constantly….
Praying for your sweet baby. Praying for peace for you and your family abd wisdom as you make decisions for his care. Believing God for a great miracle
we are praying for little Kai.
Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. (Philippians 4:6, 7 NIV)
Your line about God wrapping him up in the most perfect hug ever is beautiful! Big, warm hugs to all of you! Sending love and prayers.
We are smothering you all with God’s love and goodness.
What an amazing boy and what am amazing family – each and every day, you are all in our thoughts and prayers
Sending love and praying for healing and comfort.
Keeping you in my prayers
“I am having faith that God is wrapping him up in the most perfect hug ever.” Amen.
This post is so painful to read but I’m encouraged by your continued fight and your ability as parents to just keep loving the heck out of this kid. We all love him so much. I’m praying it’s all a setup for the biggest miracle ever. We don’t need God in the POSSIBLE. God specializes in the “IMPOSSIBLE”
I haven’t had the joy of meeting Kai in person, but my Mom and I are praying for him! God loves him and has surrounded him by family, friends and others that do, too!
God is using you in such mighty ways, Aki. You probably don’t remember me, we’ve only met once at a park and in the parking lot at Babies R Us. I can’t tell you how your faith is so encouraging to me. How you can truly see God in this is a miracle – but I know that is what we are to do but seeing a real life example is so tremendous. Thank you for inviting us into this painful journey, and know that people you barely know or people you have never met, are praying for a miracle for your son. God bless you, sweet sister.
I’m so sorry! You’re faith in God is strong and will help you during this difficult trial. I think the hardest part of trials is turning our will over to God’s. His is not always the same as ours. I’m glad you can recognize God’s hand, even in the most difficult of circumstances. We will continue to pray for Kai, you, Shawn, Maya and your families during this hard time! I pray you can have His peace with you all!
We hear your hurting hearts, and ours are torn apart, also. But we won’t give up in praying that God will keep one of His most precious promises to you, Shawn and Aki:
“My God will supply ALL your needs according to His riches in Christ Jesus.”
Or, as I like to think of it:
“In Christ, I have everything that I need to live through this terror-filled time and come out victorious on the other side…eventually.
Isn’t it great to have…EVERYTHING?!”
May God do as you’ve begged Him: to stay “close, so so close.” He hears you, and He will do as you’ve asked.
Love in Christ,
Bob and Susan Phillips
I am amazed at the power of prayer and how God responds. Right before you are to write this, Katy Rae’s mom prayed for you to know God’s presence with you and for Him to reveal to you His plan. Then to read you post where you thanked God for being there with you and that He is his doing something! You talked about knowing His plan and knowing He can heal Kai.
God IS listening and feels your pain and Knows your suffering. He is with you now and always. Be strong.
we are here waiting for good news and no pain!