Dylan spent Thanksgiving in the hospital dealing with an internal bleed, and has now been moved even further toward the top of the transplant waiting list. Her red blood cell numbers are very low (which makes a person feel miserable), but they are holding fairly steady. She will be discharged when they are confident the active bleeding has stopped. Then she will need to stay in the Stanford area for another week or more as a precaution.

A bit of explanation might help with understanding her situation. Because of its job to “clean” the blood, the liver has major venous connections. Dylan’s tumor is strangling and eroding the vessels going the liver. This increases the pressure in this network (portal hypertension). That in turn causes varicose veins throughout parts of the gastrointestinal system. As the pressure builds, these “varices” can rupture and bleed, which is an emergency.

During a scoping procedure this week, doctors identified the varices in Dylan’s stomach that likely caused her bleed, as well as some dangerously bulging varices in her esophagus. They applied a band to close off one esophageal vessel, but they have to be cautious, because too much banding can make the pressure worse. This is one reason that her blood volume needs to remain on the low side, which makes her feel unwell.

Treating serious gastroesophageal varices is like playing whack-a-mole. The only real fix is to eliminate her continually worsening portal hypertension, and the only way that can be accomplished for Dylan is to give her a new liver. Because of the tumor’s characteristics, Dylan cannot receive a liver from a living donor.

Her transplant status has now been upgraded to a level reserved for pediatric patients at great risk. Only 1% of the adult and pediatric patients on the US transplant list are at this level or higher. That represents just a few dozen people nationwide at any given time, so we are hopeful that she will receive a liver soon.

While we are grateful for her position on the list, this is a sobering development. For someone who is sick in a different way than most liver transplant patients, the reality of Dylan’s upcoming transplant has sometimes seemed a bit distant. There are good times when it is (blessedly!) easy to forget her situation. And the next moment the gravity of her condition hangs heavy.

Dylan is a trouper, but to say this week has been a disappointment is a huge understatement. She was looking forward to spending time off school and had some exciting activities planned with her family and friends. Instead, she is far away from home and just wants to go home to see the people and do the things she is missing. She and her sister Jordyn are both having a really rough time with this right now.

Dylan was surrounded with love (and aunties) on Thanksgiving and was able to eat soft foods again, which was welcome.

Today and every day we are thankful for those we love, and those who love us. Thank you so much to everyone who has supported Dylan in any way. Your help and kindness mean so much to Dylan and her family, who will need your continued support to cope with what lies ahead.

Please consider donating to the Children’s Organ Transplant Association in Dylan’s name. 100% of each contribution to COTA for Dylan is available for her lifetime of transplant-related expenses. Feel free to subscribe for these updates.