Medical expenses and Travel expenses for Sophia

January 4 th Update.

We have been in Boston and in the hospital for 26 days now. We are ready to be home. Sophia’s surgery went really well and they got out 98% of the tumor. She was in the ICU for 8 days and then on the Neurology floor until tomorrow.

The surgery wasn’t without risks and left her with a horse voice and a little trouble swallowing. They are hoping with time it gets better but for now it creates just a few challenges.

We are crossing our fingers we get discharged in time to catch our flight on Saturday the 6 th. We did find out that in a few weeks we will need to return to Boston for 6-8 weeks of radiation to take care of the tumor left behind. This will be a challenging trip but I really feel the worst is behind us.

Thank you all

so much for your continued love and support. We literally could not do this without you. I have to also commend Sophia who is struggling so much but gets up every day and chooses to smile and do the best she can with what she’s givin.

December 12 Update

We have made it to Boston. We’re all cozy in our hotel. Sophia has her preop appointment tomorrow at 11:30. Thank you for all your well wishes. We love you all.

Thank you for patiently waiting while we found out more information about the tumor, options, prognosis and best treatment plan. I had planned to update everyone shortly after our Boston trip; however, we did not have all the information and answers until today.

Following our trip out to Boston we received the biopsy results: the type of tumor Sophia has is a meningioma. While this is not a neoplastic (cancer-type) tumor, it is still invasive and where Sophia’s is located, if left untreated, will result in significant disability or worse.

The tumor is located high up in her neck and has eroded through base of her skull and wrapped itself around her right lower brain and brainstem. It has completely occluded (closed off) her right jugular vein (the vein that drains blood from her brain); it has pushed aside her internal carotid artery (main artery bringing blood to her right side of brain), and has grown into and around her brainstem, specifically attaching to a couple of cranial nerves on the right (specifically the nerves that are in charge of her speech and swallow). While a meningioma is a tumor that has “clean margins” it unfortunately is “sticky.” Its very extensive and we have been told at her age and the size it is, the only option is surgery. The goal is to try to remove as much (hopefully all) of the tumor, but there may be some concern with how aggressive they can be around some of the areas, specifically the cranial nerves without damaging them.

The surgery was tentatively planned for the end of the month, but orchestrating all the physicians and specific things needed for surgery was not an easy feat for them; thus the delay in providing further updates. Today I received a phone call that with how sick she has been lately, and difficulty controlling her intracranial pressure that they wanted to take her this Thursday, 12/14. We quickly scrambled and will be leaving Monday 12/12 to make our way out to Boston.

The surgery itself is expected to be 14-18 hours. During the surgery multiple specialists will be needed. Dr. Baier is the neurosurgeon who will be operating on the tumor, but an otoneurologist will enter to help protect the 8th cranial nerve as she gets close to that area; an otolaryngologist to help resect as they get near vital structures in her neck. As you can imagine, the potential complications are wide ranging but the biggest deficit after surgery, which we were told to expect, was problems with swallowing and speech. Speech therapy will already be on board and following her after surgery, and we are hoping to avoid any advanced feeding tubes or worst case scenario a possible tracheostomy (breathing tube through her neck) to help protect airway from oral secretions. We are estimated to be in the hospital 1 week. For the first 4-5 days or so she will have a drain in her lumbar spine (the lowest area in your back), continuously draining cerebrospinal fluid after surgery to reduce the pressure higher up and help allow the linings of her brain to form a tight seal and minimize the chance for future leaks.

We are filled with emotions. We are terrified. We are hopeful. We are also excited that this is one step closer to putting things in the rearview mirror. Most of all, we are grateful. We are grateful for the physicians taking care of Sophia, and grateful for the support, love and care from our friends, family, and even strangers.

I WILL update you all following Sophias surgery, even if it is brief. Please keep her in your prayers.

Finally, I want to conclude with this: you are your own best advocate. As a patient, if you don’t get the answers you need or understand, I strongly encourage you to consider a second opinion. Sophia’s first opinion was that they were going to just monitor the tumor with serial imaging and “wait until something more serious happened.” It was not until we went to Boston when we found out just what those “more serious” things were. Things would look very different for her if we had settled on the first route.

Thank you to everyone.

Sophia update.

Sophia, Natasha, and her dad are heading to. Boston Children’s Hospital on October 30 th- November 4 th. Sophia will be undergoing MRIs, CT’s, PET scans, bloodwork, and a biopsy of her tumor. Please send all the good thoughts. This is the first surgery that she will undergo for her tumor. The plan is to leave Boston with more answers as to a treatment plan for their next visit.

This is the latest update from Sophia’s mom :)

We got the great news that Sophia’s brain tumor is not cancerous. Along with this great news the tumor is still really dangerous for her. It is wrapped around her carotid artery,and the nerves that control her sight in the right eye, hearing in the right ear, the ability to speak, swallow, and the ability to control the right side of her face. We have great faith that her travels to Boston will be successful.

Hi, my name is Valerie and I am raising funds for this sweet 12 year old girl whose life was turned upside down over the summer.

 

Sophia is a normal 12-year-old girl who loves hanging out with her friends and has a fierce passion for dance. She is an amazing dancer and ever since I have known her, her entire life has revolved around dance. Unfortunately, shortly after returning home from dance nationals in July, she started having headaches followed by jaw pain and weight loss. After some initial imaging studies that were done locally, Sophia was urgently referred to Children’s Hospital in Milwaukee where her family was informed that Sophia has a large, skull-based brain tumor that unfortunately is intertwined with some critical structures in and around the brain. Since that time, the family has traveled back and forth to Milwaukee for extensive procedures and testing as well as meeting with numerous physicians to try to determine the best plan for treatment of this tumor. During this time, Sophia has tried to live as normal of a life as possible, but due to the increased intracranial pressure from the tumor, her headaches have been disabling. Sometimes they are so severe that she cannot sleep through the night, and at times she has a hard time keeping food down. Given how rare and complex this diagnosis is, her case was sent to Boston Children’s neurosurgery team to review. Yesterday we received the amazing news that they will accept her case and want to see Sophia ASAP. This is the absolute best news, there is not a better place for her to be with this condition.

 

With that being said, she and her parents will need to travel and arrange accommodations for her trips to Boston. This would be a significant financial strain for any family, and we want to help. For anyone who knows the Mordinis knows that they have been so generous to other families in need. Sophia’s mother, Natasha, is always the first to volunteer assistance or sign up to assist backstage at dance functions. She is always present at her children’s events with a smile and ready to jump in to help anyone who needs it. Sophia is only 12 and full of so much life and energy, full of love for her family and friends. She has learned from her mom the value of caring about others and volunteers in the youth dance classes and helps with teaching young kids dance.  No one deserves a diagnosis like this, but it is heart breaking to see it happen to such a wonderful and loving little girl and her family. Let’s help this sweet girl so she can get the very best medical care for her tumor. I know the family would never ask for donations, but they are very hard working and always supporting others in need. Now they need our support! Please consider sharing or donating to help this family get through this difficult time.