Tag: Hospital

posts from when kai was in the hospital

Hope and Joy and Faith

Ok let’s be honest here. I’m in need of some hope and faith. To be very honest I just prayed to God over Kai that He would carry Kai on this journey and I wanted to give up all selfishness in wanting to keep him here on Earth because I do not want him to suffer and if He is to take him soon that He please do it peacefully. And the truth is, after this prayer and I guess giving Kai to God, I felt some hope. But I need your help. Kai is sleeping really peacefully right now – this is amazing. There is that verse that talks about faith as small as a mustard seed – and I have been struggling to have that these past days especially after yesterday’s diagnosis. So let’s hear it for faith, joy and hope! I want to believe, I really really do. Because I do know God can heal. I remembered this one video that I thought I’d share as good inspiration…. Kai thinks he’s hilarious and somewhere in his head he’s told himself THE best joke ever.

thank you for helping us have faith – you are being the Body of Christ to us and it is amazing.

and as I’m finishing this – Kai is awake and he is hungry and he got off the couch and took my hand so I could help me walk over to the refrigerator to show me what he wanted. He also stuck his finger in my ear to tickle me. These are good signs I think. 🙂

Diagnosis part two

A number of you have offered to connect to resources or people you know who may have ideas for treatment so let me share the very little we know about the cancer. He has been diagnosed with Atypical Teratoid Rhaboid Tumor (ATRT). It is very rare and occurs most often in children younger than 3. Given that is so rare, there is not a standard treatment for it but rather the best luck is often found in clinical trials. But truth be told, the success rate is nothing to discuss. In addition, the fact that it is so aggressive and Kai’s has already spread throughout his brain and his spinal cord means that any treatment would have to be widespread and just as aggressive and this would be to maybe extend his life by some months. We are seeking out what experimental or clinical trials may be out there because we need to make an informed decision but I wanted to let you know what we are having to consider.

It is wonderful having Kai home, but he is still very sick. He rested the best he has in a while but he still can not sleep very long and this morning he’s struggling quite a bit. And as silly as it sounds, I hate medicine time – he’s not really eating/drinking much today so it’s hard to get it down and we have to restrain him and force it and to be honest I’m a little nervous if we’ve even been able to get the right dosage in him. I can’t imagine what this is going to be like for him to suffer more. We don’t know what to do. We’d give both our lives for him not to suffer. I ask for your prayers for peace for him and joy and for strength and wisdom to make the right.

And as you’re praying I’d like for you think of the life this little boy has. Yesterday when we told him we could go home, we said we can go home with Daddy and Mommy. And then Kai said “and Maya too” … Kai loves his little sister. He is such a kind and caring big brother and Maya lights up when she sees him. Maya’s little squeaks were one of the only things that can sometimes get him to open an eye or two. So I’d like to share some pictures of these joyful two little nuggets. Kai this morning told me that Maya wanted her owl to play with and that she needs her water cup – he’s always looking out for someone. Kai and Maya from Nov 2013

Kai checking out Maya toy Dec 2013

Siblings being silly January 2014

Thank you again so much for your help, prayers, connections and countless other things – we are so blown away and humbled by your generosity and overwhelming kindness.

Home, Sweet Home

It was chaotic getting out of the hospital and it was a quiet ride home, but it is SO good to be home. Kai is already doing better! He’s even smiled. 🙂 He has eaten a bit and really hasn’t stopped talking. He’s the only one thinking straight as far as I’m concerned. He had to tell us 532252caab28b9e263b132e6where to find his James train (and tell is that it is #5). He also had to tell us where to find his Hand, Hand, Fingers, Thumb book (thanks Rajiv!). Truly a remarkable kid.

I love this kid. His little bit of energy now is so encouraging. I love his mom. She has a ton of strength that she gets from God, friends, and family…her strength is something that I will forever draw from.


Diagnosis – Brief Update

This post won’t have many details because we need time to process, but we met with the oncologist this afternoon who gave us the results of the pathology test. I won’t write the name right now because truthfully I don’t know where the sheet of paper is and the truth is it doesn’t matter. He has a very rare type of cancer and the treatment currently available is more about prolonging life rather than surviving. We only have the diagnosis right now and a brief summary of the type of treatment he would have to endure (chemo + radiation + transplant + possibly more). The medical team here is awesome and we’re seeking out all kinds of opinions and research and see anything and everything that is out there but the truth is with this diagnosis we will also need to consider the option of no treatment and his quality of life with/without treatment. 

For now, the neuro-surgical team has given us the clearance that we can go home today. We’ve taken that option and will be getting Kai ready to go home. 

Please pray for God to heal Kai. Please pray for a miracle. Please pray that God will give Shawn and I the guidance on what the best next step for Kai is regarding treatment. Please pray for joy for Kai. 

Thank you so so much for your support. This fight isn’t over. This fight is for life.