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There and Back Again
After a couple weeks at home, we are back at UWMC. Steph's liver and kidney numbers have been on the rise again and they have decided to admit us today to keep a closer eye on her. The toxin buildup from the liver injury is causing some mild cognitive impairment; she has all the right answers - just a little slow. Unfortunately, I have been slacking on the updates here, so we have some catching up to do... hang on as this one is a bit of a roller coaster.
Liver Biopsy
Steph had a liver biopsy (PDF) and paracentesis procedure performed at UWMC on Friday. These were performed as outpatient procedures and the both went smoothly. They removed 3 liters of excess fluid from her abdomen which gave some nice relief. We are still awating the results of the liver biopsy and should be able to go over them tomorrow with the gastroenterology and transplant teams.
The team has been keeping a close eye on the liver and kidney numbers since our discharge. They where holding steady until the last week, which is when our team called for the liver biopsy to take a closer look.
We did just get word that they are going to start her back on the defibrotide treatment. I will share more on the specific plan after our meeting with the teams tomorrow. We know from our previous experiance that the treatment is a minimum of 7 days (but typically 21). That means we will be here at least one week, but we are in no rush to leave as we know it is beneficial to have the extra data and care that is provided by the amazing staff here at UWMC.
Bone Marrow Biopsy
We did have a planned bone marrow biopsy at the clinic following our discharge from the hospital a couple weeks ago. Unfortunatly the results show that there is still trace amounts of leukemia in the marrow and peripheral blood. While disappointing and a poor prognosis, the focus at this time remains on the health of the liver. The prayer is that once the immune suppression is backed off, the new stem cells will be able to attack the trace reamaing leukemia cells.
Community
We were able to make the long journey (one house down) to visit our community group from church on Thursday night. It was so good to see them and be surrounded physically with their support. Prayers were prayed, tears were shed, and we left encouraged and thankful for the reminder that we have not only their love and support, but all of yours reading this as well.
Back to school, back to work
The kids had their first week "back to school" and thier first day back to Renton Classical Conversations. They are excited to be back with friends and some structure and "normal" life.
I have been back to work (remotely) for a couple weeks and have been busy getting caught up on trainings and syncing with colleagues to help bring me up to speed on projects and changes.
Prayer Requests
For healing - Liver and kidneys specifically
Leukemia would disapear
Julie and Peter would adjust well to the new structure of school days
My mom's (Paulette) health as she supports us all and tries to keep up with the kids
I would be able to stay healthy and focused
Continued peace through this season.
Psalm 23
The Lord is my shepherd; I shall not want.
He makes me lie down in green pastures.
He leads me beside still waters.
He restores my soul.
He leads me in paths of righteousness
for his name’s sake.
Even though I walk through the valley of the shadow of death,
I will fear no evil,
for you are with me;
your rod and your staff,
they comfort me.
You prepare a table before me
in the presence of my enemies;
you anoint my head with oil;
my cup overflows.
Surely goodness and mercy shall follow me
all the days of my life,
and I shall dwell in the house of the Lord
forever.