Mackenzie Rose's Care

For those of you who may not know, our sweet niece Mackenzie Rose Beach was recently hospitalized for hydrocephalus secondary to a malignant brain tumor.  Mackenzie was a healthy 8 month little girl at the time of diagnosis.  She was taken to the emergency room after she spent the morning of March 22 vomiting.  A CT Scan showed swelling of the ventricles and a collection of cerebral spinal fluid within her brain.  Mackenzie was transferred to Georgetown University Hospital Center, where a MRI identified a large tumor between her ventricles blocking the flow of spinal fluid.  A neurosurgeon completed her first emergency surgery on March 23.  This surgery involved placing an external ventricular drain to remove excess fluid, as well as a partial resection of the mass for biopsy.  Mackenzie was given six days to stabilize, prior to a second surgery on March 29 for a near total resection of the remaining tumor.

The pathology results returned as a malignant cancer, known as Atypical Teratoid Rhaboid Tumor (ATRT).  This is an extremely rare, aggressive cancer seen in only 3 children out of 1,000,000.  She remained in the PICU at Georgetown for 15 days before she was transferred to Children's National Medical Center to begin an intensive treatment with their oncology department.  Mackenzie has done well and has shown incredible strength since these two invasive surgeries.  She will continue to work with Speech, Physical, and Occupational Therapies to regain prior functioning.

The neuro-oncology team at Children's has identified an extensive treatment regimen to include an experimental drug as part of a study with St. Jude's to give Mackenzie her best chance for a good prognosis.  It will involve approximately 14 months of aggressive chemotherapy and focal radiation therapy .  The team has already explained that a significant amount of this treatment will require her to be inpatient.  The radiation therapy will include a specialized form that would be available to her in Boston.

There are several ways that you can help our little angel.  Your contribution no matter how large or small will mean so much to her and her family.  We are also requesting prayers for Mackenzie's healing and recovery, as big sister Madison has prayed to God asking "God please make Kenzie all better and make her come home."  As the chemotherapy begins, Mackenzie will require multiple infusions of blood and platelets.  We urge anyone that is interested to donate at the Blood Donor Center at Children's National Medical Center.  My sister has also indicated a desire to help other families going through this very difficult time, as she witnessed and continues to experience the pain these families endure with a sick child.  She has expressed an interest in giving back to local hospitals, by creating care packages for families with simple items to help them get through the initial "difficult time of living at a hospital."  Therefore, any monies remaining would go towards giving back and paying it forward.  Her goal of course is to have Mackenzie Rose be a part of visiting the hospitals to pass out these care packages.

Thank you for your prayers and any contributions.  May God bless you.

"God promises to make something good out of the storms that bring devastation to your life."  Romans 8:28

#kenziestrong