Benjamin’s Story

Site created on June 26, 2018

Welcome to our CaringBridge website. We are going to be using it to keep family and friends updated in one place. We have so appreciated everyones love, support, and prayers!


Benjamin's Story:
The day after Ben's 2nd birthday he was at the doctor for a routine well child check-up. He has always been a super healthy kid so we had no concerns or anything going into the appointment. During the visit, his doctor noticed that there seemed to be a lump in his liver. She asked a few more questions and ordered some more bloodwork to be done. She also thought it might be a good idea to see a G.I. doctor and also get an ultrasound to rule out anything it might be. We still were not worried at this point. Following his bloodwork, I got a call from his doctor saying some of his levels were off. She gave me a list of all the things that might be the issue, on the bottom of that list and least likely was that it would be a tumor. Then 4 days after Ben's doctors appointment, he had his ultrasound. We didn't hear anything abnormal leaving the appointment that Friday afternoon, but that evening I got a message from his doctor asking us to come back in on Monday morning to discuss the results. I still was expecting to be something like he is anemic or had celiac disease, and we would discuss how to change his diet. But then on Monday June 18, our lives were changed. At his appointment, his doctor comes in with a lot of papers and tells me that they found a tumor on the right side of his liver. It was 10cm big. She said we could go home to pack but then would need to go straight to the hospital.  I was in shock, I could barely control my emotions long enough to call Jeremy and tell him to come home. I called my mom (who had just drove home to Nebraska 2 days earlier, and she and my dad packed their bags and began the drive back to Texas). Over the next couple days in the hospital we find out that Ben has a rare liver cancer called metastatic hepatoblastoma. It usually affects children ages 3 and under. It is metastatic because it has spread to other areas in his body, but it is only a stage 2 (meaning that it is still operable, and hopefully will not require a liver transplant). He has already started chemo and will continue chemo treatments for around 3 months. Then they can do another MRI to see if the other spots are gone and if they will be able to successfully remove the tumor with surgery. The next several months are going to be long and hard, with lots of hospital stays, but we are so thankful for the doctors and nurses caring for our son and all the support we've received from our family and friends!




Newest Update

Journal entry by Stephanie Ray

Since February when I posted last, Ben has been doing so great! He has had three other AFP checks and each time the number has been good! He also had another sedated hearing test, MRI, and CT scan to check everything. His hearing test came back exactly the same as the last one- some moderate high-frequency hearing loss (they told us that his hearing can be affected for up to a year from being off of treatment, so we were glad that it hasn't gotten any worse). His scans also came back looking normal! 

He will have another clinic visit in June, then scans one more time in July. After his scans in July, he should be able to just to go the lab for monthly AFP draws- which will be much easier than going to the clinic every time for a visit! We will still go to the clinic, but just every few months instead of every month. 

Ben also started Kids Day Out a month ago! It's two days a week for a few hours and he is loving it! By the third day, he was walking straight into his classroom to go play and forgetting to tell me "goodbye!" I feel like he has grown so much these past couple months! He is such a wild, silly, stubborn, smart boy!

We are so thankful for how well Ben is doing, but there is still this little cloud over our heads of what could happen, of the cancer coming back. I would just encourage you all to continue to pray for families who have been affected by childhood cancer, to find ways to donate, and to get involved. There are a lot of really neat organizations out there. If you would like some resources on hepatoblastoma and how you can help and support those with it, here are some really great websites:

www.owlsforavery.org

www.addiesresearch.org
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