I find it completely remarkable and overwhelming how support, encouragement, and prayer we’ve experienced this past week…and that’s really only the support we know about through texts, phone calls, emails, and social media. Much of it is from people we have never met, but all of it is from people who care.
It hasn’t even been 24 hours since the proverbial bomb was dropped. I know Aki and I have both gone to dark places and it’s amazing that every time we get pulled out by everybody fighting for Kai or by Kai himself.
Kai is doing well right now. We still need to wait for 2nd opinions. We have heard stories of 2nd opinions being life changing. We have heard of connections elsewhere in the country that can provide 3rd and 4th opinions and may have expertise specifically with ATRT. I even heard that there will be a prayer for Kai by the Priests at Mass at Notre Dame on Sunday.
Thank you, all!
And of course one of my favorite pics of Kai, Maya, and Aki. 🙂
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. 🙂
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.
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.
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 where 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.