Kai has needed to use this full BiPAP mask because her ND tube was disrupting the other mask. This new mask has helped, she has desatted less & I can hold her while she wears this mask. She is still on the BiPAP 24/7. It hurts my heart to see her with the mask and stuck in her bed, but I want her to have all the time she needs to recover, of course. The teams are still trying to coordinate which day she will be having her trach & g-tube surgeries. We do know that the surgeries will happen next week. It’s sounding like they will be scheduled for the 21st- The day before Kai’s birthday. I’ve decided that we will celebrate Kai’s birthday once she has recovered enough from her surgeries. Kai is still my little stoic lady. Words can’t express how I’m in constant awe of her. Her entire life has been an immense struggle, she doesn’t know anything else but this life. She hasn’t complained once about the changes that have made things increasingly difficult for her. She just continues to make the most of what she has. 

#overcome #kaicanmovemountains #fightforacure #atrt #gogold #proton #radiation (at Building Hope- Seattle Children’s New Building)

Kai has needed to use this full BiPAP mask because her ND tube was disrupting the other mask. This new mask has helped, she has desatted less & I can hold her while she wears this mask. She is still on the BiPAP 24/7. It hurts my heart to see her with the mask and stuck in her bed, but I want her to have all the time she needs to recover, of course. The teams are still trying to coordinate which day she will be having her trach & g-tube surgeries. We do know that the surgeries will happen next week. It’s sounding like they will be scheduled for the 21st- The day before Kai’s birthday. I’ve decided that we will celebrate Kai’s birthday once she has recovered enough from her surgeries. Kai is still my little stoic lady. Words can’t express how I’m in constant awe of her. Her entire life has been an immense struggle, she doesn’t know anything else but this life. She hasn’t complained once about the changes that have made things increasingly difficult for her. She just continues to make the most of what she has.

#overcome #kaicanmovemountains #fightforacure #atrt #gogold #proton #radiation (at Building Hope- Seattle Children’s New Building)

There’s about to be #Kai #spam. Because. ❀️ #love 
She will be 2 on the 22nd. We will be celebrating her birthday here in the PICU @seattlechildrens. I’m sad that this birthday will not be the one I had promised her, but I’m going to do my best to make it grand for her. 

#kaicanmovemountains  (at Building Hope- Seattle Children’s New Building)

There’s about to be #Kai #spam. Because. ❀️ #love
She will be 2 on the 22nd. We will be celebrating her birthday here in the PICU @seattlechildrens. I’m sad that this birthday will not be the one I had promised her, but I’m going to do my best to make it grand for her.

#kaicanmovemountains (at Building Hope- Seattle Children’s New Building)

Over the last few days, I’ve noticed several comments that were concerning to me. I want it to be clear that Kai is stable, she just has a lot going on right now. She is stable enough to not be in the PICU, but she needs a nurse one to one right now as we work out her oxygen needs. I know all of the machines are intimidating to see. It’s very difficult for me that I can’t even pick her up because it makes it harder for her to breathe. I hate seeing her stuck in her crib. I know that it is scary that Kai was sleeping for days. You would sleep too if you hadn’t in months. You would sleep if you were hooked up to machines that alarm and beep all day & night, if you were poked at every hour of the night, & had dozens of medical personnel in your room at every hour talking about your care. You would sleep as much as you could after a year of harsh treatment that consisted of the most toxic chemotherapy drugs, immunotherapy, proton radiation, brain surgeries, numerous other surgeries, transplants, several blood & platelet transfusions a week, & so on. You would sleep if you have fought your entire life for your life. You would sleep after beating stage 4 brain cancer. You would sleep & dream up grand adventures of the day that you won’t be confined in a hospital room. Kai slept for a few days, but she has been much more active & responsive the last few days. She smiles & giggles when she hears my voice. She has wanted to listen to music, be read to, & to hang out with Ritz. Kai has defied the odds time and time again. Even golden warriors need rest & time to heal, too. 

#kaicanmovemountains #throwback  (at Building Hope- Seattle Children’s New Building)

Over the last few days, I’ve noticed several comments that were concerning to me. I want it to be clear that Kai is stable, she just has a lot going on right now. She is stable enough to not be in the PICU, but she needs a nurse one to one right now as we work out her oxygen needs. I know all of the machines are intimidating to see. It’s very difficult for me that I can’t even pick her up because it makes it harder for her to breathe. I hate seeing her stuck in her crib. I know that it is scary that Kai was sleeping for days. You would sleep too if you hadn’t in months. You would sleep if you were hooked up to machines that alarm and beep all day & night, if you were poked at every hour of the night, & had dozens of medical personnel in your room at every hour talking about your care. You would sleep as much as you could after a year of harsh treatment that consisted of the most toxic chemotherapy drugs, immunotherapy, proton radiation, brain surgeries, numerous other surgeries, transplants, several blood & platelet transfusions a week, & so on. You would sleep if you have fought your entire life for your life. You would sleep after beating stage 4 brain cancer. You would sleep & dream up grand adventures of the day that you won’t be confined in a hospital room. Kai slept for a few days, but she has been much more active & responsive the last few days. She smiles & giggles when she hears my voice. She has wanted to listen to music, be read to, & to hang out with Ritz. Kai has defied the odds time and time again. Even golden warriors need rest & time to heal, too.

#kaicanmovemountains #throwback (at Building Hope- Seattle Children’s New Building)

The good news is that the Avastin is working, the necrosis spot is shrinking, & Kai has had improvement since starting Avastin. The symptoms from #necrosis can be improved, so Kai’s current state could be temporary, though it will take time to recover. It’s hard to predict the future, but I believe Kai will walk one day. And now her medical teams do too. We believe that Kai will return to the Kai that was dancing in her crib, no matter the situation. 

#throwback #kaicanmovemountains #gogold #fightforacure #atrt  (at Building Hope- Seattle Children’s New Building)

The good news is that the Avastin is working, the necrosis spot is shrinking, & Kai has had improvement since starting Avastin. The symptoms from #necrosis can be improved, so Kai’s current state could be temporary, though it will take time to recover. It’s hard to predict the future, but I believe Kai will walk one day. And now her medical teams do too. We believe that Kai will return to the Kai that was dancing in her crib, no matter the situation.

#throwback #kaicanmovemountains #gogold #fightforacure #atrt (at Building Hope- Seattle Children’s New Building)