Support Sean’s fight against Cancer

Sean's Fight against Medulloblastoma;

Sean's Cancer came back,

After a year and a half of fighting Sean and myself thought he was in the clear. His final MRI showed more growths appearing. He is now in the process of IV chemotherapy and Intrathecal Chemotherapy and Oral Chemotherapy. Sean has made the decision to fight for as long as we continue to have a good outlook and we can tell that the new approach is actually doing something.

Reoccurring Medulloblastoma does not have a good prognosis especially in adults.

Please help and support his fight against this beast.

Approximately one year ago Sean was diagnosed with Medulloblastoma. I am going to try to describe his fight with this beast.

After diagnosis Sean was scheduled for surgery at the University of Miami. Dr Roberto Komotar was the surgeon that removed the tumor and after 6 days in ICU Sean was able to come home. That was a very difficult time for him, besides having the Craniotomy Sean had a cranial pressure tube inserted in his head to make sure that his brain and cerebellum was healing properly and no bleeders. This was the most difficult for Sean I believe. Because of the operation and coming down from anesthetic, this made Sean very disoriented and angry. He had episodes of outbursts and seizures for the first three days after surgery. (this is common for surgery of this kind). But every time this happened spinal fluid would start coming out the pressure tube which caused Sean great pain, and trying to calm him down to equalize pressure was sometimes difficult. At one point Sean had to be secured down to bed so as not to hurt himself. Sean made it through and was released to come home on the 8th day if I remember correctly. ( I was and still am by his side almost 24/7).

Once Sean was able to come we had to wait 10 days before his treatment schedule started. The plan of attack was 6 weeks of Proton therapy in combination of 5 individual doses of Vincristine Chemotherapy. The Proton therapy was all done at the University of Miami through the SCCC (Sylvester Comprehensive Cancer Center). This required travel from Boca Raton to Miami every single day of the week for 6 weeks, having weekends off.

The Proton therapy machine is a massive piece of equipment. The room Sean had to go into and be locked in was the best I can describe, walking into a 30x30 room surrounded by 8 foot thick concrete walls lined with lead and a door that appeared to be one that would be used for a nuclear attack. It was 4 foot thick lead and concrete on a roller system that sealed Sean by himself strapped down to a bed 1 inch thick and hard made out of a material that would let the protons through to achieve their target. Once locked in The treatment could be difficult, having to lay still for anywhere between 20 to 60 minutes while a large cylinder went around your head. Very similar to an MRI except 5 times as big at least. The technicians could direct beams of protons at infected areas in Seans cerebellum and spine that still showed areas of concern.

After 6 weeks of Proton Therapy Sean was ready to enter the second phase of treatment. Chemotherapy.

Sean’s Therapy Schedule was a 6 month journey of 3 different types of Chemo and continuous monitoring of body chemistry, physical therapy and hearing and optical monitoring.

The Chemotherapy schedule was the first week of each month we would drive to Miami., check into the hospital get Sean settled and start the IV. He had to have continuous IV fluids the entire time at the hospital. 8 hours before the first dose of Chemo (Cisplatin) followed by Vincristine then fluids each night was when chemo was administered. The second night was Cyclophosphamide and third was Cytoxan.

Sean did well the first cycle at first. We were released and went back home and all seemed ok. On the 8th day Sean had to receive another dose of Vincristine administered in Plantation Florida at the outpatient center located there. All was good at first and then all hell broke loose. Night after night of almost like clockwork every two to three hours

Sean was sick This went on for 2 weeks. The third week Sean was able to start keeping small amounts down but nothing heavy. As he ended the third week and entered the fourth week Sean started to need transfusions of blood and platelets. By the time his body started to recover he started the process again. The nausea got worse each cycle.

Besides the Chemo Sean was scheduled for three Spinal taps and 4 MRI’s during the chemo Cycle and after the cycles there was the final MRI before monitoring. All MRI’s and Spinal taps were looking great until. The last one.

The day everything changed April 1st this seems fitting God has played a joke on Sean. Sean had his final MRI or we thought before the monitoring phase. As we walked into the Doctor's office (Dr Gampell) I noticed three additional people in the room. My heart sank. I'm not sure if Sean noticed but I did. Dr Gampell told us both it was not good news. The MRI showed two small spots on his cerebellum that were suspect. Dr Gampell scheduled us to immediately talk to Dr Komotar that day and discuss options. Dr Komotar’s team informed us that the spots are too small for surgery and we needed to have another MRI in 4 weeks to determine growth or not. This was the longest 4 weeks.

April 23rd Sean had another MRI and then we waited. On Thursday of that week Dr Gampell’s office called and told us to be back on Monday to go over the results. I knew then something was not good. But keeping a happy face and not to bring Sean down I played it off. Monday came and we drove to Miami for the news. Myself and Sean walked into the office took vitals and sat and waited for Dr Gampell to enter. He came in greeted us and started to load MRI pictures on screen. Then the news. Recurring Medulloblastoma was the diagnosis. Options not many. We could try to enter a Clinical trail at 5 different hospitals spread across America basically all in phase one (basically a guinea pig) or stay at university and enter into a vigorous treatment of Metronomic and targeted Anti-Angiogenesis treatment. In short 5 different medications to include a Port designed to deliver another type of Chemo directly into Sean’s Cerebellum and starve the Cancer of oxygen and blast it with different Oral forms of Chemo to keep it from spreading.

Either way there is no 100% Survival rate from what i could determine is, Sean does nothing he could be gone within one year. I said Hell no. With the treatment There is not long term but 3-5 year survival is possible, with hopes of new treatments coming out each month each day things change.

This is ultimately Sean’s decision. As of today we/he is going to start treatment at the University of Miami and we will review every 6 months and reconsider options. Quality of life is our priority. I can not tell you how this tears me up inside even writing this. I am crying, knowing the Love of your life has been given this ultimatum at the age of 31.

Each day is a gift now every minute with him is a prized possession.

I am asking you to Help Sean, and help me help Sean With this battle Making our life a little easier by easing the financial burden that this beast has put upon him. I am his 24/7 caretaker which I would not trade for the world. The precious time we have together is a gift from God. Please help

#helpingsean, or #seanzahul