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No Scan

The doctors just rounded and allthough we are all curious they have decided that is not a good enough reason to put Kai through the scan….

Yesterday I was so conflicted about even doing the scan, for the same reasons the doctors talked about today. What will the results show us? It won’t change our course of action for Kai. Our priority is still to keep him comfortable…
But today when they said no I felt like I wanted to cry right there. I practically kicked the doctor out of our room..ok I did kick him out, jokingly

After all of these decisions they have forced me to make for Kai. After all the tests and procedures I went along with trusting them even when I wasn’t convinced. Now when I ask them for one little scan… It’s no longer up to me.

I feel like with Kai’s stability and no scan to prove otherwise we are right back where we were before we came in. He is stable. He is not getting better but he is NOT dying. And if we all can remember we were supposed to come I to the JFC that Monday to talk about treatment options, chemo, trials. In a way we are right back there again!

Now they are talking about trying some pedialite in his stomach to see if be can handle it. That way we can get his meds back to being given through his G-tube that way we can administer them at home…

I know no one has a crystal ball. I know there are no answers and obviously the doctors can’t fully predict how these things are going to go but I just don’t know what to think anymore.

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Crystal ball anyone???

31 thoughts on “No Scan

  1. I have been closely and tearfully reading for a week now. You are one of the strongest people I have ever heard of. Please know that you have so many people praying for you and your precious little Kai. I live in Milford and I run the Milford Moms group that you belong to. Anything at all that you need, we are right here just waiting to hear what we could possibly do. If you guys do end up going home everyone would be happy to bring meals or anything that would help. Please know that the entire group is praying.

  2. Praying so hard and hoping you will find comfort that even miracles take time. Sending many hugs and prayers for you all , especially for sweet Kai!

  3. Although I don’t personally know Kai and his family, I pray for him daily and that god is looking down on him and his family. I cannot imagine walking in your shoes and not knowing what each day will bring. We will keep Kai and his family in our thoughts and prayers.

  4. I disagree with the doctors and wish they gave Kai the scan, even if it just gave your more information for your decision. You have been through so much and I do not think the scan is too much to ask for. However no scan for now so you move forward. Soak up the extra time you have been given and keep trusting your intuition and keep loving that little angel. You are doing great.

  5. We all wish that we could give you the answers you desperately want and need. Our hearts are heavy and we are keeping you and Kai and all your loved ones close to them. You are all in our thoughts and prayers for peace, strength and healing. We will always believe in miracles. Take things 5 minutes at a time when you have to and remember to be kind to yourself and take care of you. You are such a wonderful mother and Kai’s best advocate. Sending you hope, love and hugs.
    Melissa

  6. I have been following kai’s story for a week or so now and keeping him and you in my daily prayers. My heart breaks knowing what Kai and you his wonderful mother are going through..wow you are such a wonderful mother and you are so strong..I am sure you are strong because of course there is just no other choice but just know that there are so many people here praying for you and Kai. Thank you so much for keeping this blog and updating us all on Kai as we continue to pray.
    Cherry

  7. Holding you all in prayer and thinking of you often. What a treasure this unexpected time feels like!! Hoping that Kai continues to feel pain free and you all continue to be able to bask in being together.

  8. Unfortunately we don’t have that crystal ball to tell the future but what it tells at the moment is how brave you all are and what an unbelievable job your doing as a parent.

  9. It’s Jen from Why Me again. I don’t know if u me my mother Margaret but I know that she us watching over you all. Minute by minute is all you can do. If there is anything I can do let me know, meals, comforting ear, right now your world is upside down but everyone is praying for you and here for you when you need them. Unfortunately there are no crystal balls I wish there were. I understand that you don’t want to put your baby through anymore, you are doing what your motherly instincts are telling you. If u ever want to talk. 7742146657

  10. Glad to hear Kai is staying strong figting this battle as hard as he can. Prayer is strong and miracles DO HAPPEN…. A lady commented on previous post that 1 year ago hospice was advised for her son and today he is still with her doing great… The body can do anything and children bounce back…. Kerri as a medical professional the best advice I can give is go with your gut, that motherly instinct… Keep talking to the docs and make your thoughts and questions heard…. You are Kais mother and being an advocate for him, fighting for him might just change ones mind into doing the Scan. He has fought long and hard and I am sure still has the fight in him…. Stay strong…

  11. Kerri,
    You are so strong. That is why Kai is not giving up! He sees it in you. I do believe that there are so many people praying and thinking constantly, that miracles are happening. Love is speaking through so many people, something must happen. Sometimes (in my experiance most of the time) doctors don’t know all the answers. I would trust what Kai is telling you & what is inside. Pray about it, put it out there, it soon will come. We are constantly thinking of you, your family & that amazing boy!
    Love

  12. Hi Kerri-
    I think about you and Kai, first thing in the morning and last thing at night, and many, many times in between. I am not religious but I wish and hope for you both with everything I’ve got.
    While I know it is not the same as getting better – I really really believe that he is doing as well as he is now as the result because of you, because of your snuggling, because of your ability to allow joy and laughter into this totally devastating situation and most of all because of your powerful love for him. He is a beautiful, strong boy and he is so lucky to have you as his mama.
    I have been so impressed with how you have managed the elements you can control when there is so much you cannot control. And to be honest I feel so foolish writing you things that I’m sure people who know you better are telling you every day but writing you is all I can think to do.
    I think you are doing the hardest, most important parenting job in the world right now. Please stay in the hospital if that makes it easier for others to make it easier for you And if you go home, and you need help, please let us know. We want to help so badly.
    Much love,
    Tamar

  13. Whatever you chose Kerri you will never be alone in this. We will come to your house, we will come to the hospital. Medical degrees are wonderful but honestly they do not take the place of a mother’s intuition. If you feel the need to fight then fight. If you feel comforted in the thought of being home and Kai can go then do that. Trust those feelings. Usually when it comes to moms the first instinct is the right one. There are no instruction manuals given to us when we first give birth to these wonderful little beings, but by trusting in ourselves and in the ones who love us we eventually become the “expert”. Remember when Kai was first born. You were probably so scared. You had no idea what to do and you probably thought you would “break” him. But guess what..you didn’t. By trusting in the fact that you knew above everything else that you loved this child with all you had gave you the strength to just do. We all make mistakes as parents, but if the decisions are based on Love we are always right.

    Jen

  14. Hi Kerri,
    It’s Sam from Why Me, Maggie’s mom. Lori from Why Me has been keeping me updated with what is going on with you and Kai since last Saturday. I started crying my eyes out for the decision you have too make…You are doing an amazing job and you are very strong person. Kai has an awesome mom. I am thinking of Kai, you and your hubby morning through night. I have the kids praying for you guys. I have a pray line out for you. I am sending kai Reiki, Integrated Energy Therapy (helps remove past traumas), God , St Jude(nothing is impossible-miracles) , Archangel Michael (gives strength when needed), Archangel Raphael (healer), Bear Spirit…Lots of good energy surrounding you and your family. Kerri, go with your intuition, if you want to do a scan, then do it. You are Kai’s only advocate… Please if you need anything, I will come and help. I will be glad to do some energy work on Kai if you like…Love you guys, thanks for keeping us updated while you are going through this. Love Sam

  15. You are Kai’s voice, his eyes and ears and you are doing an amazing job. I wish doctors would listen more. Listen to wishes, to concerns and to every other thing that a patient has to say. Sending you and Kai lots of strengths on this new path that was chosen for you.

  16. I AM SO SORRY THAT YOU ARE GOING THUR THIS ,DOCTOR SOMETIMES CAN BE SO HEARTLESS ! I UNDERSTAND THAT YOU WANT SOMETHING ELSE DONE ! THAT IS YOUR BEAUTIFUL SON AND YOU ARE WATCHING HIM SLIP AWAY ! YOU ARE A GREAT MOM AND KAI IS LUCK TO GET TO SPEND THIS TIME WITH YOU AND YOU WITH HIM ! THERE ARE NO GOOD ANSWERS TO ALL OF THIS ,BUT I PRAY THAT KAI IS PAIN FREE AND YOU GET TO BE WITH HIM AND LOVE HIM AND HOLD HIM ! IT BREAKS MY HEART ! YOU HAVE TOUCH ALOT OF PEOPLES LIFE WITH THIS EMOTIONAL JOURNEY WITH YOU AND KAI ! JUST KNOW WE LOVE YOU AND KAI AND I PRAY FOR PEACE AND AND JOY FOR YOU AND KAI ! HUGS AND KISSES FOR YOU BOTH ! GOD BLESS

  17. What a trooper he is!!! Someone called him a warrior and that sounds very fitting. I hope and pray every day for you and Kai and your family.

  18. I have been following Kai story for a while now and I feel like he is part of my life . I don’t know him in person but I love him like he is mine …. To Kai mom … U r an incredibly strong person than you so much for sharing his story with the world . U r in my prayers every night so is Kai . I am so glad that things look a little better and deep down in my heart I hope that miracle will happen and the tumor will be gone one day and Kai will live long and happy life … I have cried many times when I read ur blog but I also smiled too . I live seeming u happy with Kai and live seeing him close to u … I pray God will give all the strength and even we don’t know each other my heart is with u guys every day and night xoxoxoxox

  19. Kerri

    From the moment I met you and Kai in the Camp Sunshine nursery I have felt the strong bond between you, Kai and Gigi. The ability to laugh in the moment, to be in the moment and to be strong in the moment is evident in every move you make. That is whether You and or Kai were having a good or bad moment. It is incredible what you and Kai have had to endure. My thoughts to you are to cherish every moment you have together (not that you don’t) as Kai’s gift to you. I know that I have cherished the fact that I have been blessed to know Kai.

    Two PPs’s for you ,,,,,, 23 years ago doctors gave my then 17 year old daughter a death sentence, fortunately she is a 40 year old work in progress

    ,,,,,,, 2 days ago I went to the doctors with a list of symptom. …….. his answer ” I have no idea what the problem is”

    My thoughts and prayers are with you.

    Susan October session

  20. I want you to know that regardless of what may be going on inside or out, the things we can control are what count. They are the things we focus on when our hope has dwindled and all fear takes over. Stay strong and you’ll be held by our Lord and savior just like you are holding your baby. Look at him and see a miracle in all the pain you go through. Your relationship is so precious with your son. Think of the sweet moments you’ll never, ever take forgranted. Think of the other mothers and fathers holding their babies tighter knowing its so real and inportant to make each moment count. The way it should be.

  21. Your strength is admirable and although they decided no scan, I hope you can find happiness in knowing you have more time to spend with Kai. Lots of prayers for you and your family.

  22. Follow your mom’s instinct. I deeply believe in the impact that our collective prayers, thoughts and energy are having on Kai. He is clearly fighting. Follow your heart. Follow your primal feeling of deep knowing….With so many of us thinking of Kai and you everyday, I believe, I believe….

  23. Trust yourself, you know what is best and what to do. Your love is amazing. Praying for Kai, you and your family, and believing.

  24. YOU DO WHATEVER YOU FEEL IS THE BEST FOR KAI ! I KNOW THIS HARD ON YOU BUT YOU ARE STRONG . YOU HAVE SO MANY PEOPLE PRAYING FOR YOU AND KAI ! I PRAY FOR PEACE AND FOR GOD TO BLESS KAI AND TO HELP YOU DURING THIS TIME ! WE LOVE YOU BOTH ,BIG HUGS

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