On the evening of June 15 Joseph asked me to take him to the ER after a few days of increased difficulty breathing and some developing chest pressure. We thought he was having an asthma/heart attack. Due to his connective tissue disorder (Loeys-Dietz Syndrome) CT imaging was performed to rule out aneurisms – a common complication in patients with LDS.
The images identified a mass above his bladder and the presence of ascites (fluid collection in the abdominal cavity). The ER doctor informed us this meant advanced cancer and Joseph was admitted to the hospital. Over the next few days, he received a paracentesis (a procedure to drain the fluid) and some oxygen. He was referred to the cancer center and released a few days later.
Over the past two weeks Joseph has undergone additional paracentesis procedures (to keep the fluid down, which makes him much more comfortable) and tests/biopsies/PET scan. We also took some time to let this news sink in and then share with our children and families.
This past week (on his 40th birthday) the diagnosis of urachal cancer/adenocarcinoma was confirmed.
This coming week Joseph will have an additional paracentesis and get a port placed. He will then begin his first round of chemo on Friday, July 9th.
Because this type of cancer is so rare and his LDS/ other health complications, we will also be seeking a second opinion from Froedtert in Milwaukee.
Our family already faces many health struggles in our daily lives, and we often keep the health updates we share more general or even completely private. We do not want to let our struggles define us, but rather shape us as we grow. We prefer to focus on the positive and are grateful for each and every day we have together as a family. This life is a gift, and it has always been our family goal to treat it as such.
Joseph’s cancer diagnosis came as a shock to us. We have had some time to connect with our families, pray with our children, cry, snuggle and tackle a few things on our to-do list before treatment begins. Humbling as it may be, it is now time to reach out to our community. We believe in the power of prayer and are asking for you to lift us up at this time. We do not know or understand why challenges and suffering arise – but we trust good will come out of this experience in some way.
While we plan to use this site as a place to update everyone on Joseph’s cancer, we also plan to share our hearts and our family’s experience here in the hopes that others may share their struggles with us, so that we can offer up our own fear and uncertainty for the intentions of you: our family, friends and community.
Joseph has chosen to pray for the intercession of:
St. Joseph - patron saint of fathers
St. John Paul II - whose prolonged suffering at the end of his life continues to have a distinct impact on Joseph
We are called to community – and thank you for being ours. Our family is wealthy beyond measure due to the love and witness that surrounds us each day.