Welcome to Kevin's Krew 

Kevin’s journey with Gorham-Stout Disease began on September 21, 2014 while hanging out with a friend. A simple bear hug of his buddy resulted in an ambulance ride to Children’s Memorial Hermann Hospital in Downtown Houston with a displaced broken femur. This began the mystery of how the strongest bone in our bodies snapped without trauma. Initially, doctors theorized a bone infection as the cause, but Kevin displayed no other symptoms. During his 2 week hospital stay, he was seen by orthopedics, infectious disease, oncology, vascular anomalies and pediatrics. All test came back normal and cultures came back negative for bone infection, so he underwent surgery. The femur started to heal and x-rays looked great initially.

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January 2015, we started to notice bruising and pockets of swelling. At that point we were referred to hematology, findings there showed anemia and low vitamin D, but no answers as to why the bruising was appearing. Cystic lesions were also forming under the skin causing "lumps" in right thigh, knee and back of thigh.

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February 2015, tests showed inflamed synovium and increased lymphocytes.

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March 2015 a battery of test were performed that ruled out rheumatological issues and metal allergies.

 

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April 2015, we started to notice changes in the x-rays of his femur. We were sent back to Hematology to follow up. Hematology then referred us to the vascular anomalies team at Children’s Memorial Herman. We met with that team on the 16th of April with no results. Fever started the following day, resulting in him being admitted into Children’s Memorial on April 18th. An MRI was completed that evening. Due to MRI findings, orthopedics removed his plate April 19th. Kevin remained in hospital due to being diagnosed with pneumonia. While I was holding Kevin's leg in shower, femur re-fractured on April 23rd. On the 24th of April, Kevin underwent surgery to stabilize femur with another external fixator, general surgery team also removed enlarged lymph nodes from his groin to send off for biopsy.

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May 2015, orthopedics referred us to Orthopedic Oncology for evaluation. They referred us to Texas Orthopedic Hospital where a bone biopsy was performed to look for infection again. Results were negative. The pin sites began blistering so orthopedics removed the external fixator and placed Kevin in a brace to help stabilize his leg.

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July 2015, we saw a pediatric dermatologist at Texas Children’s along with Hematology/ Oncology. They reviewed all imaging and slides from biopsy in May, where they were confident that Kevin did not have a bleeding disorder, cancer, or a vascular malformation. She referred us to Pediatric Infectious Disease. Infectious disease team believed Kevin may have an auto inflammatory condition causing his bone and knee findings. In mid-July, Kevin fell on his crutches and the femur fractured again, above the previous breaks. Kevin was put in a knee immobilizing brace to help keep his leg stable.

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August 2015, we were recommended to see the Co-Director of Vascular Anomalies, who ordered genetic testing. All results for periodic fever syndromes came back normal.

 

September 2015, we went back to Texas Children's to see the new chief of orthopedics. He reviewed previous imaging with his team and was confident of a Gorham Stout Lymphangiomatosis diagnosis. He recommended a DEXA bone scan and to consult with a professor in the department of molecular and human genetics at Baylor College of Medicine who also leads the Undiagnosed Disease Network. He agreed with the Gorham Stout diagnosis and ordered whole genome and exome sequencing, which we are still awaiting the results.

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January 2016, we met with Oncology at TCH-West Campus where Kevin was started on a treatment of Sirolimus tablets, Bactrum, and had an infusion of zoledronic acid. Kevin is responding well to these medications and we are hopeful for continued results. Due to all of the trauma and the amount of time that has passed, Kevin’s rehabilitation is requiring extensive aquatic therapy.

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May 2016, we met with Chief of orthopedics at Texas Children's and he gave us wonderful news! Comparing the x-rays from January to May, we have new bone growth! Not much, but anything is better than bone resorption!

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July 2016, Kevin had his second infusion of zoledronic acid with no side effects! His oncologist also order a leg length discrepancy x-ray to be done so that we could order a lift for Kevin's shoe. Results showed that his right leg is 5.8 cm shorter that the left. When we went in to order the lift the difference in Kevin's posture was pretty incredible. 

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August 2016, met with Dr. Dormans at TCH again. We are still seeing more growth! They have scheduled an MRI and DEXA (bone density test) for November. At that time we should be able to tell if we have a surgery coming up or not.  

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To be continued.....

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