Sun's out, Kai's Out – Page 12

19
Mar
2014

Out of surgery

categories: Kai's ATRT Journey, Posts by Shawn

Kai’s surgery is over and he’s been moved back over to the PICU. The neurosurgeon was able to place a more permanent shunt as a pressure relief valve. The pediatric surgeon was able to install a port-a-cath. This is a permanent access point with a catheter into a vein near Kai’s heart. This will alleviate all of the needle sticks as IV’s should hopefully no longer be necessary.

He looks so peaceful right now. Actually sleeping (thanks to anastesia) and occasionally stretching out his arms. Amazingly, I don’t remember the last time I’ve seen him do that. Something that basic. We love seeing it now.

I don’t think we were necessarily worried about the surgery. Strange that it seems minor now. While waiting we were crying. I think about Kai’s future and I cry. I think about him here and I cry. I think about everything we’ve done since he came into our lives and I cry. The one thing I was sure of, though, is that as soon I saw him I would be smiling. Kai buddy always makes me smile.

19
Mar
2014

Surgery #3

categories: Kai's ATRT Journey, Posts by Shawn

Kai will be taken off to surgery in an hour or so. I’m amazed that such a little body can go through three neuro surgeries in less than two weeks. The surgeries themselves don’t seem to bother him all that much, either bc he is not aware they are happening or bc it is masked by the general discomfort that he is feeling.

Not really sure what to write but wanted to let you know that the surgery is soon. It’s supposedly relatively routine and nowhere near as major as the original tumor resection.

Last night was rough. Kai started having shallow breathing so he couldn’t have any pain meds. I couldn’t even bring myself to stand at his bedside. Aki stayed with him and sat in his bed all night – comforting him and reading comments that you all have left on this site. That’s beautiful.

For whatever reason Kai had been clinging onto a granola bar that Sheerin had given him last Sunday before coming to the ER. He has not let that thing go. He hadn’t eaten anything in 2 days, choosing to hold onto his food rather than eat it. Last night, out of the blue, we heard the wrapper start crinkling. He had started digging into his snack! Why he chose to hold on to that bar for so long and why he decided at that moment to finally take a bite I guess we can’t know. It seems like Kai, though – stubbornness to keep things ordered knowing that he fully intended to take advantage when the right time came. This simple act cracked me up and made me smile. Of course he wouldn’t let that bar go, he was going to eat it…eventually!

We are hoping and praying that this surgery will be able to alleviate the fluid build up in Kai’s head, better than the external drain anyway. No matter what, it’s a necessary step to getting back home and recovering there rather than in the hospital.

At home Kai can get back to teaching his little sister at an early age how to navigate the maze of videos on YouTube, identifying those few videos that he can watch on an endless loop. 🙂

We love you, Buddy!

18
Mar
2014

Kai

categories: Kai's ATRT Journey

I didn’t really know what to title this entry but just “Kai” seemed appropriate because his name means more than just his name. We met with the oncologist today. The version of this disease he has is more than aggressive. It’s almost unfathomable how fast it’s spreading in just the past ten days. We were told of our option that could possibly slow it down to help us give Kai some better quality of life for a little while but it’s not certain how long, they say maybe a few months. We were told this disease will take our child’s life. I think I now know what they mean when they say you that you feel just numb. The decisions to make – how does one even do this?

Shawn and I haven’t made any decisions. Tomorrow morning, Kai will have surgery to place a shunt in his head to divert the fluid from his head to his little belly where it can be better absorbed and lessen the pressure. He currently has a drain in place but he can not leave the hospital with that drain and this shunt will allow him to go home.

I’m not sure what to think. But, while I was feeding our daughter tonight I felt that I was supposed to let you all know the news. And I am being pushed to tell you to not despair. I am being pushed to speak Life. I really do not know what the heck is going on here. I have no idea what is going to happen. But I’m being pushed to speak and say do NOT think of death. We must speak of life.

Do not be discouraged by this post. Please. Believe in life. Jesus is life. God we’re willing and we believe, will you please perform this miracle and heal our Kai for your glory? Yesterday I wrote about how Kai and I spent our day. Kai was just as in and out of it as he was today, but yesterday I was supported by God to speak life and so I spent the day with Kai and not the disease. Today was harder and the disease and the darkness crept over my eyes and anger and frustration rose up and made me want to act against the staff against our friends/family and against anything over any stupid thing because I was succumbing to the dark. I do not know what will happen to Kai. I am praying so hard and believing in a miracle that will show God’s power and work. But regardless of what happens, I do not want to remember any of the days I have with Kai as days with the disease. I want to remember them as days with Kai and his full of life spirit. Oh, I love this boy. I wasn’t one who always wanted to have kids. I was actually thinking I’d never have them. But my heart was changed by God and I was blessed to be given the privilege of being Kai and Maya’s mom. God, please guide us. God, please keep holding our Kai tight and loving him more perfectly that we could ever do. God, I still ask you if you will please heal Kai.

If you’re feeling lost and the darkness is there, I thought you might like these pictures of Kai that I feel give a good glimpse of the huge life that is inside this boy. God created Kai, God is light, and God is love and his light and life and love are in little Kai. Believe with me, hope with me, and together we will pray for Kai.

We will never be able to thank all of you out there, friends, family, those we don’t even know for all of the things you’ve been doing that we know about and don’t know about and I wish we could personally thank each of you, so please know from the bottom of our hearts the deep, deep gratitude we have.

17
Mar
2014

Test Results

categories: Kai's ATRT Journey

After our late night operation we knew we had further tests to figure out what was causing the extra fluid building up in Kai’s head. A CT scan showed the surgery last night was successful however Kai was not making the turn around they expected so we had another MRI late this afternoon.

The results of this MRI show that in just a little over a week the cancer has metastasized in the back of his brain which is most likely causing him the pain and lethargy. It is difficult to describe what it feels like to see that change. Tomorrow we will talk about options for treatment but the truth is, on paper it’s not going to look good at all. We are faces with deciding what will be the next course of action.

Our son is in pain and seeing how much disease is in his brain and how much he must be feeling, I am blown away by what a tough kiddo he is. And as Shawn wrote the kid is as sharp as a tack – his spirit is in there beneath this broken body. And the kindness he showed to the nurses last night and today – such a sweet sweet soul.. With a dry sense of humor 🙂

I literally collapsed on the floor of the entry to the OR last night just asking why does this have to happen to this innocent boy or really to anyone. No one deserves this. but the truth is several things happened last night that showed me that God is absolutely doing something here I just have no idea what and I hate that it is hurting Kai so much.

I’ve had trouble with gathering my faith in this as I wonder how we can all endure more but today I was convicted that God can absolutely heal Kai. I don’t know if that is his plan but I know he can. So today we celebrated life – Kai was in and out but he wanted to read books so we read lots of books and he even had one of his teachers Ms.Kathy read to him. He asked me to sing songs so now Dell children’s hospital staff in many areas have a story to tell about a deaf mom singing over a CT scan and we talked about all the things he wanted to do. He’s still here. But he is really sick and getting worse. I am having faith that God is wrapping him up in the most perfect hug ever. And yes I am praying for a miracle.

We are so thankful for the staff here and their compassion and all of you who are supporting us every single hour of the day. We need you now more than ever – for Kai. Thank you God for everything be near to us. So so near.