Since we last wrote, we have continued to wrap our heads around the news of the growth on Teddi, Liviah’s new life saving liver. February hit us HARD, for aside from that news, the pokes, tests, and biopsy that came with it, Liviah was back in the hospital getting IV antibiotics for a possible infection and pneumonia. While we were in and out of the hospital, Jaxson had 2 bouts of illnesses- an ear infection and then a week later, adenovirus.
Basically, for the month of February, we were either in the hospital or disinfecting every inch of our house, worried that Liviah may pick something up that it would be a huge setback for her… BUT, we got through it!!
The Medical Stuff:
As March rolled in, we finally received the pathology report from Liviah’s biopsy. Apologies for not updating our blog, but if you follow us on Facebook you saw the great news that the lesion looked benign. That was the number one thing we had prayed for, and we are so thankful to have gotten that news!
Monthly monitoring of the lesion has continued, along with medication changes, and more frequent blood draws following that. For a little bit, Liviah’s ast and/or alt levels were wonky and one or the other was just out of range, but things seemed to get back where they needed to be. Currently she is not getting blood draws as often, and her medication dosage has stayed steady.
Aside from the lesion being benign, there is not a specific diagnosis as to what the growth is, and Liviah has continued with monthly ultrasounds and had an MRI/MRCP in April. The ultrasounds have shown some growth of the lesion, and at one point there was a new finding of common bile duct distention. Her doctor let us know that from the MRI/MRCP that her bile ducts are overall okay, and we continue to pray for her health and a favorable answer/path/solution to all of this.
Her imaging and pathology findings will be presented at an upcoming liver conference and other doctors, pathologists, radiologist, surgeons, ect. ect. will be weighing in on her situation.
We don’t know if this means that we’ll take a wait and see approach, if they’ll want to do another biopsy to gather more tissue from the lesion, or if they will think that a resection of her liver will be what’s best.
Clinically, Liviah looks and acts very well- she has energy, has fun with family and friends, and quite honestly, if you didn’t know about her journey, you’d not even guess that she had a “surprise” liver transplant just over 16 months ago. We thank God every day for her second chance at life!
The Fun Stuff:
On top of overcoming hospital visits and illnesses, and a positive pathology report, Jack and I were able to fulfill a Christmas present for the older 2 kiddos, and they got to see Carrie Underwood!
She’s continued gymnastics and has started a new spring soccer season. We got to partake in egg hunts, egg dying, and celebrated Easter.
We’ve already visited our local amusement park- multiple times.
Also, coming up, she’s taken the opportunity to be the pediatric LIVEr Champion for an upcoming American Liver Foundation Liver Life Walk! While partaking in the day, we will have an opportunity to share some of Liviah’s story and to hopefully bring more awareness to organ donation, for without it, our Sweet V wouldn’t be here!
We are doing our very best to continue to step into our purpose in all of this, and truly believe great things will (continue) to come from everything Liviah and our family goes through.
As my track record proves, I can’t promise that updates to her blog will be more frequent, even with summer break on the horizon. We are hoping for a joy-filled summer, great health for all, and lots of amazing memory making days.
We appreciate all the support, love, and prayers from those near and far for Liviah and her lifelong journey, and our family as a whole.
I don’t think Jack and I would be where we are if it weren’t for our village!
Love,
The Widders