Dear family & friends,

Thanks for your patience as the blog/social media have not been updated recently. We know many are waiting on news – and we were also waiting in hopes to update with good news only. However, after watching the protein-related numbers increase since the surgery, it is with our hearts breaking to acknowledge that the disease has recurred and is attacking the transplanted kidney, Elliott (named by Arielle & Eliana).

Recent timeline-

July 15: Successful surgeries! We are blessed Arielle & Eliana came back to us with no immediate issues. It was anticipated that Arielle would be discharged after 48 hours but she actually needed about 4 days.  We anticipated that Eliana might be discharged after 7-10 days; however, it has been about 3 weeks and now advised it will be at least another 3-4 weeks before she can finally go home. We still don’t know the full plan once discharged, possibly back to the hospital every other day.

July 15- August 1: Eliana is on DAILY plasmapheresis (2.5-3 hours) to try and keep the disease under control/lower protein spilling. Arielle, PJ, Eliana, and Parker try to see each other every evening by meeting at the hospital (1.5-2 hr round trip) if only for a meal or snuggles.

July 23: Eliana had her 8th birthday at the hospital. The staff was great and let her have a private room to celebrate with family ???? Thanks to everyone who sent presents- they have been keeping Eliana busy during the extended hospital stay.

August 2: Eliana’s body ran out of energy multiple times from blood loss due to drawn blood for testing and plasmapheresis. (pic in post)

August 3 (midnight to 3 am): Eliana received her first blood transfusion. 

August 3 (afternoon): Eliana received an intravenous steroid infusion.

Although she has been through so much already and stays brave and strong, she was NOT happy about getting another IV. She threw her craft project across the room and started yelling. She is newly 8 years old and has already been through more in 2 years than most have or will in their entire life. I get it that she got so mad. She should be. I want to throw things and yell too. THIS IS NOT RIGHT- enough is enough already. This child needs a break. This family needs a break.