Hey there! My name is Kristen & I am Lola's mother. Lola is 6 yrs old & is about to be activated on the transplant list for a new kidney after a grueling 2.5 yrs on Peritoneal Dialysis. Lola has End Stage Renal disease due to having Wilms Tumor cancer (diagnosed at 10 months old). Wilms Tumor Cancer is a type of Kidney cancer - for Lola it was bilateral tumors on her kidneys that filled her entire abdomen in less than a week. At 14 months old, she had surgery to remove the pound worth of tumors, but in doing so, they also took a third of her left kidney & all of her right kindney. She completed chemotherapy in January 2017 & has been in remission ever since!
Lola lived a medically stable life for 3 years with only two-thirds of 1 kidney until her partial kidney ultimately failed in September 2019. Shortly after, a dialysis catheter was surginally placed and Peritoneal Dialysis began in November 2019. She has been on dialysis for 2.5 years now and is finally nearing the day when she will be activated on the transplant list -May 23rd, 2022!
Because of Lola's age & this being her 1st transplant, she will be highly prioritized on the list. Her transplant team has told us to "be ready" because the call for a cadaver kidney is expected to be quick once activated.
When we get the call, Lola and I will have to have already packed bags and be ready to jump in the car & GOOOOO. The hospital where Lola goes to is 2 hours north from our home. Lola & I will spend a few weeks in St.Louis once we get "the call", leaving behind her father & 3 sisters. After Lola's kidney transplant and she is stable enough to come home, we will be going back for bloodwork 2x a week for several months. Lots and lots of trips back and forth to St.Louis for a while, which means mom will not be able to go back to work for who knows how long....and her father is disabled.
This is going to be a very tough time for us, financially & emotionall. We have been blown away at all the support from Lola's school, our own community, as well as family/friends all over the country who are proving to us & Lola that she is loved and cared for by so many.