Over the summer of 2018, Lavender started having some distressing symptoms. We saw her pediatrician, who referred us to a number of specialists. After 3 months of testing and visits with at least 7 different specialists (everything from ENT to Hematology), she was referred to Stanford, where she was diagnosed with a cluster of autoimmune diseases; Autoimmune Hepatitis, Inflammatory Bowel Disease - Unspecified, and Erythema elevatum diutinum (EED). That was October 2018. At the time, we were told that it was possible she would need a liver transplant in 3-5 years, but it depended on how well she responded to treatment, and the level of scarring (cirrhosis) in her liver.
Since then, she has been carefully monitored, and taking all her medications (it's a lot!). Part of her treatment results in immune suppression, and with Covid that means that she has had very little interaction with people who don't live with us.
This fall, as part of the normal monitoring of her condition, her doctors discovered that she was experiencing a complication of advanced cirrhosis of the liver known as Portal Hypertension. This is where her liver is so scarred that it can not keep up with the flow of blood, causing essentially a "traffic jam" or back pressure in her circulatory system. As a result, she developed 4 esophageal varices, basically varicose veins in her esophagus. This is a very concerning complication, as the varices could burst, causing internal bleeding that could be life threatening.
On September 30th, Lavender had a procedure known as "banding" where a rubberband is placed around the varices to hopefully obliterate them. She will be returning for a follow up procedure to see if the banding was successful in 2 weeks.
In discussing the amount of portal hypertension and the degree and amount of varices that Lavender has developed, her doctor at UCSF, Dr. Burgis, said that we have reached the point where we need to meet with the Liver Transplant team, as that is the path that we are on.
I am creating this site to have one place to update everyone, as this is going to be a complicated journey, and I don't want people to feel left out if they aren't notified of developments as they happen.
Thank you for visiting. We appreciate your love and concern.
Thank you for your support up to this point! At this time, we have decided to partner with the Children’s Organ Transplant Association (COTA), a nonprofit dedicated to raising funds in honor of patients like Lavender to assist with transplant-related expenses. COTA’s services are free, so 100% of every donation made in honor of Lavender will assist with a lifetime of transplant-related expenses. We are suspending this CaringBridge page, so please continue to follow Lavender’s journey at https://cota.org/campaigns/COTAforLavender
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