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Post hospital update

I know you all ave been waiting for an update on Kai.
The truth is he is not doing well.
After leaving the hospital last week he has had a pretty ruff time. We were only out one day but it felt like forever because he was so miserable. I was so worried about him, and I felt like our week inpatient gave us no answers. I actually couldn’t wait to get back to clinic Thursday morning.
Of course the plan was to bring him in see how he was doing since going home, and to give him his IV dose of Avastin. Seeing how bad he was the day before I really wasn’t sure giving him the chemo was the right thing to do. My plan was to go in so they could check him out but then tell them I wanted to hold the chemo.
After seeing him, his NP came to her own conclusion that he was not up for chemo. I don’t know if his team had already discussed all this before we came in but the conversation quickly went from holding off on today’s infusion to stopping ALL his chemo.
Honestly I had been thinking the same thing.
It’s obvious he has been in pain and it has been getting nothing but worse. The past few months each month he was worse than the month before, then we could we him declining each week. By Thursday He was doing worse than the day before.
He can hardly do anything these days. With all of the tests and meds they tried while we were in patient, we left worse than when we arrived.
The chemo isn’t helping him. Not just this new chemo, but the last chemo protocol and the one before that. At this point it is pretty obvious his tumor is not responding.
We are not giving up on Kai but it is most important to me that he is as comfortable as he can be right now, so we are shifting focus.
His team suggested we take a few weeks off chemo and see how he does. Keep on top of his pain and allow him to rest. If he somehow bounces back we can always start back up with treatment, but at this time it is just to much for his little body to take.
So what does all of this really mean???
It means that Kai has been able to spend the past few days visiting with family and friends and for the most part was comfortable and content. He had a little last minute birthday party for him, that he happily slept through held in someone’s arms all day.
It means we are working with the Pediatric Advanced Care Team on making sure he is comfortable and happy. We are continuing with his complementary care, acupuncture, massage, reiki, herbs, music, etc.
The past few days have been up and down, but today he is doing well. He is alert and comfortable, which is all we can ask for right now.

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6 thoughts on “Post hospital update

  1. Holding all of you close to our hearts and lifting Kai in prayer for his comfort, happiness, and peace for all of you. Hoping and praying that resting for awhile will then allow the continuation of chemo. Sending lots of positive thoughts!
    Always with hope,
    Melissa & family

  2. Dear Kerri,

    I just found out about all you and your family have been going through this past year. Although we haven’t been in touch lately, I think about you often and my thoughts and prayers are always with you, Marc, and little Kai (he’s beautiful by the way). I’m still local, here in Massachusetts so if you every need anything, anything at all, I’m here.

    Wishing you peace, hope and the biggest of hugs during this difficult time.

    Your Friend Always,
    Danielle Cassettari
    978-505-1893

  3. HAPPY BIRTHDAY KAI!! I knew you were turning two soon I just didn’t know how soon. I hope he had a special birthday. Kerri and Mark I will continue to pray for your beautiful boy and for the both of you. I pray for strength and for hope. Sending you all the love I can muster.
    Jen

  4. Kerri, I am thinking of you all and wishing Kai a very happy birthday. I can’t make sense out of all the hurt and pain you have all been going through, and I know beyond a doubt that your decision to press pause on treatment for now to let Kai’s body and your heart have a rest is the right one. I am sending you peace and lots and lots of love…hoping that everyday is a little bit better than the last.

    Love always- Allison

  5. Hey Kerri…I hope this break is just what Kai needs so that he can return rejuvenated and ready for the chemo protocol to continue.

    A big 2nd HAPPY BIRTHDAY to Kai!

    Always thinking of you guys,
    Shari Butler

  6. Happy 2nd birthday to the most precious of children. Kerri, may you continue to have the strength that you have had all along on this most difficult of journeys. You do truly amaze me. It is a mystery why some children must suffer. You are making the best decision right now for Kai and I will continue to pray for God’s healing miracle. My continued prayers and love to Kai, you, Mark and all of your families.
    Love,
    Susan R.

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