I apologize for the delay in updating the current status of Kadence, many of you have reached out, sent lots of love, support, and prayers! Believe me they have been felt, used as fuel to navigate a disease that shows no mercy and a system that often makes no sense!
The beauty in all of this is the work of so many continues to lead into additional support, we didn’t even know we needed! Kadence kidney function has declined to approximately 14-15%, total! This is a number the team at Children’s Mercy has tried to keep him away from for as long as possible. As you can imagine it is problematic with a disease that has no treatment or cure, you throw everything in the arsenal you can in hopes that it gives Kadence more time and strength to get the transplant! If that sounds dramatic, it is, I struggle to find the exact words to describe it because everyday is different, yet the same! I will say this we have learned so much about Kadence, how strong mentally and physically he is. Rockhurst has been so supportive, allowing Kadence to finish the semester and remain home! Physically he does not have the stamina to make it through even a partial day of in person school! We will have to make some tough decisions 2nd semester but with our Rock family we will get through it!
With that said, I have reached out to the KU Living Donor Team to determine if they can give us any indication if someone is being tested that may be a match to Kadence! Due to HIPPA laws they are unable to tell me if anyone is a match at this time or even how many people are being tested! If you are waiting on or want to be test, have questions of any kind please contact Liz McKinney or Darris Strickland from the KU Living Donor Team. I appreciate all of you for you willingness to help Kadence!
Liz McKinney, RN
Living Donor Nurse Coordinator
The University of Kansas Health System | The Center for Transplantation
Phone 913-588-0266 | Fax 913-945-7846 |
lmckinney4@kumc.edu <mailto:lmckinney4@kumc.edu>
Darris Strickland
Kidney Living Donor Admin Coordinator| Center for Transplant
Phone | 913-945-6929 Fax 913-945-7846
dstrickland@kumc.edu <mailto:dstrickland@kumc.edu>
Kadence is activated and incurring points on the “deceased donor list”, he is not listed on the National Kidney Registry through Children’s Mercy, yep you read that right! This is ALL determined by a pre approval process with my health insurance and the “center” you choose for the transplant. There are so many caveats, I am learning something new everyday. Those of you that know me well know even on my darkest days I refuse to let a broken system of any kind destroy my faith, hope, determination, fight, you get the gist! My willingness to do WHATEVER it takes to save my son is a strength sent straight from Lord!