Bentley’s Medical Care and Expenses

Hello Everyone my name is Meghan and I am the mom to an amazing 9 year old little boy named Bentley. I am trying to raise money for our trip to Boston Children’s Hospital and some of our bills while I am out of work. I am a single mom who has been trying to work and take care of my son and mom as well but unfortunately lately that hasn’t been the easiest with having to be in the hospital as well as other many other medical appointments and lab work that Bentley has had to have. So I am asking for a bit of help while I take him to Boston to try and get more answers figured out.

Here is a bit of a back story to Bentleys medical care and why we need to go to Boston Children’s Hospital. Bentley started having medical issues back in February of this year. I had noticed that his eyes and skin were starting to turn yellow so I called his doctors office and they advised us to go directly to the emergency department. We were then admitted to the hospital for a work up and further lab work. Bentleys liver and spleen were both enlarged and it was decided he would need further workup on his liver for his liver enzymes and bilirubin were very elevated and there wasn’t a definite answer as to why it was happening. Bentley was put on medication to help his liver out and was treated for the jaundice and we were discharged from the hospital. Unfortunately the following week his lab work was still concerning so they re admitted us to the hospital to complete an MRI under sedation and to complete even more lab work and testing and to start on IV medications. We had a four day stay with still no definite answers but his liver started responding to the medication so we were able to be discharged. The MRI did show narrowing in his bile duct in his liver but the medication was helping his liver and his lab work was also improving. Over the next few months we had kept repeating lab work and it was improving and it actually normalized at the end of March.

Come May when it was time to repeat lab work he started showing worsening in his liver enzymes again. Bentleys GI doctor wanted to have his MRI repeated but we were hopeful that we could wait until after school got done which we were able to do. In late June Bentleys MRI was repeated and it showed improvement in the bile duct that was seen before but worsening another bile duct. His lab work also started getting worse although this time his White Blood Cell count was low and so weren’t his platelets. July 3rd we were re admitted to the hospital for that day his White Blood cell count became very low and his platelets were at a critical point of being too low. Bentleys GI doctor had also contacted the oncology/hematology team to have their input and the decision was made that Bentley would need to have a liver and bone marrow biopsy during this hospital stay to start looking for answers. Bentley received two platelet transfusions one before his biopsies and one the day after before we were discharged. Bentley had much more lab work up during this stay and was discharged on a high dose steroid to help his immune system. It came back that he was negative for leukemia and non-Hodgkins lymphoma, so it was looking more like an autoimmune disorder. Within the next week his lab work started coming in and was diagnosed with a very rare autoimmune disorder called Evans syndrome.

Although this gave us some answers as to what was happening with his blood it didn’t give us any answers as to what was really going on with his liver. His GI doctor would like to diagnose him with autoimmune hepatitis but his liver biopsy didn’t show a specific cell that they usually see with this diagnosis so this leads us to going to see a team of liver specialists down at Bostons Children’s Hospital. I am told upon our visit to Boston that they would like to admit Bentley to complete another liver biopsy under their care and to possibly start Bentley on a immunosuppressant drug that needs to be started in a hospital setting. Due to all of this I am asking for a bit of help with funds while we are down in Boston for the week if not longer while we figure out more answers for Bentley. I appreciate any donation and if you can’t donate please share around!