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. 

Nap time

I know that Moms everywhere understand the beauty of nap time for so many reasons. Kai has never been one who likes to nap or sleep (he even fought off the effects of the sedation drugs twice when we first tried getting his MRI) and rest is something his body just hasn’t been able to get much of lately and it’s what he needs to heal and allow his brain the space to reorganize and rebuild. But he’s sleeping peacefully right now and once again nap time is a beautiful thing 🙂 but now for such bigger reasons.  Thank you God for helping little guy get some rest.


Big Strides

After a pretty rough night for Kai dealing with some of the side effects of the steroids he is on that are helping him with managing the swelling and inflammation, Kai had an awesome day.Kai Out to see the Sun 03.12.14

Getting this wheelchair has given new life to Kai – I think we went on 6-7 “walks” in the hospital today. It was so windy today (up to 45 mph gusts) so we couldn’t go outside, but we’d go and see the sun in the windows and take his visitors for walks asking different people to push him in the wheelchair. Kai also got to finally take a shower after about a week and several days of Neosporin hair – contrary to popular belief, Neosporin not so great as a hairstyling product. He asked to put on his firetruck tshirt (thanks Nicco!) and his own pants and even brushed his teeth. I know this may sound cliche but holy moly, am I ever re-learning the lesson of how beautiful and life-changing he small things can be.

Kai first silly face 03.12.14

Kai made great strides with the occupational therapist too – he sat up on his own using his elbow and arms to help him up so he could do a puzzle and I think this gave him new confidence and he would try again and again if we could find good motivation such as when we just couldn’t figure out which car was Lightning McQueen or Mater or if Thomas the Train was red or blue.

Kai and his puzzle 03.12.14

We are so thankful for so many moments today and Kai had a peaceful nap today and right now he’s only moaned a little bit while trying to sleep which is amazing. Thank you God for a wonderful day with Kai monkey. I want to remember the way it felt to give him that hug when he sat up without pain and how he gave us high fives and made a “funny” face for Sheerin when she wanted to take his picture. I know that things are going to get a great deal more tangible (read: makes my stomach turn upside down) on learning what Kai will have to go through, but I want to try to see the life and love in these days – I know I’m going to struggle with this, I don’t want him to suffer anymore than he already has, but this is part of his story. And Kai’s story is one of life.

It has to be. Yay for Toothbrushes 03.12.14

He’s a little stinker and feisty and kind and thoughtful. And Lord please help Shawn and I and all those who care about him, walk with Kai in this so that he only feels lifted up, loved and comforted. Let Kai know that Love wins and that he can have that peace in his heart.

Thank you again so so much for all of your prayers and support today – you helped Kai make great great strides!

We’re mobile

Kai buddy had a somewhat restful night, even if it didn’t really start until midnight. The steroids he is on mess with his appetite and generally make him uncomfortable. Being in the neuro ward rather than the ICU is a big change. Nurses are only in every 4 hours rather than every 1-2 and it is substantially quieter.

This morning Kai has a lot more strength! He’s rolling around a bit on his own and is up to sitting more upright rather than laying down. The big deal for me was seeing him walk kai and his chair 3.12.14across the room to a wheelchair (which was baited with Starbucks pumpkin bread) with his PT! She pushed him around for a few minutes so that he could get the feeling of hallway air blowing through his hair. Aki missed it, but he’s already asked to go on a walk so we will hopefully make it to some sunshine today.