Up until early May of 2002. Sean was just another 6-year-old boy. He enjoyed playing sports, including basketball, baseball, and football. He loved riding his scooter and bike, and playing with his friends. One morning in early May, Sean came into our bedroom. He told us he had a headache and then layed down on our bed. A few minutes later, he ran to the bathroom and vomited. We initially thought this was some kind of bug and decided to just "keep an eye on him". The headaches continued to come and go over the next few days. He would sometimes vomit, other times not, and he always felt better after a little while.
Now, as a little background to this story, Sean had broken his left arm in a fall from the "monkey bars" a couple of weeks prior to being ill. His orthopedic decided a week after his cast was put on that it was not healing correctly and Sean would need surgery to correct it. We took him to a surgery center where an anesthesiologist put him under and the Dr. rebroke his arm in order to correct it. When Sean woke up he was very upset and we and two nurses had to hold him down so he couldnt get off the bed. He eventually calmed down but decided he did not like the Dr. to make him sleep. We wanted a second opinion to make sure this Dr. had reset Seans arm correctly and were told to see his pediatrician. We set up an appointment for the following week.
The weekend before Seans appt to see his pediatrician, Dr Kim, Sean vomited a couple times, but had no fever. We thought he might have the flu or a stomach virus so we weren't overly worried. On the day of his appointment, Thursday May 9th, Sean vomited again. When we saw Dr. Kim, we brought up the headaches and vomiting. Dr. Kim said it might be some kind of bug and to come back in a couple of days if it didn’t get better. We returned 4 days later, the following Monday, and he told us to give it a few days longer. Wednesday night, Sean happened to get a headache while Kelly was on the phone with her sister, a nursing student, who mentioned that headaches in children are not normal. She advised Kelly to take Sean back to the Dr. as headaches and nausea can be signs of a brain tumor. We did not think this was the case but knew something was wrong.
The next day, Thursday May 16th, we returned to Dr. Kim's office and he decided Sean needed a CT (Catscan). Now, I just want to let all of you know that we are very pleased with Dr. Kim, and his response to Sean's condition. Only 7 days passed from our first trip to the Dr.’s office to the CT scan. Some people think that was a long time. After hearing horror stories from parents in the hospital about 1 to 2 month waits for diagnosis, we are quite pleased with our Doctor!
We took Sean to his CT the same afternoon as the doctor's visit. The scan was performed at about 4:30 PM. While we were still driving home from the scan, Dr. Kim called our house and left a message to call him ASAP. I have to say that hearing Dr. Kim’s message scared me worse than anything in my life ever has. I called him back immediately. Dr. Kim informed me that Sean had a large "foreign mass" in his head. When I asked if it was a tumor, he said "yes". I can't begin to describe the panic I felt at that moment. Dr. Kim told me that the tumor was preventing his brain from draining fluid. Since the fluid couldn't drain, the pressure inside Sean's head was building, causing headaches and nausea. Dr. Kim told us to get to UCLA emergency room right away as the pressure in Sean's head could cause permanent damage or even death.
Needless to say, we didn't waist any time getting to UCLA. We had to stop and pick up the CT images, but we were at UCLA by about 8:00PM that night (Thur 05-16-02). We were admitted and screened and then waited for several hours while they decided what to do next. Sometime around midnight we were consulted by a group of doctors. They ordered an MRI to better see the tumor. Sean did very well in the MRI chamber. He surprised the doctors by laying still for the scan, even taking a nap. They originally wanted to put him under anesthetics to make sure he didn't move, but Sean did not want the Drs to make him sleep because he still remembered his first experience and chose to lay still. They did not beleive us that he could do it but we did not give in and to their surprise, Sean did great!
We didn't immediately see the results of the scan although we were told that Doctors were reviewing it. Meanwhile, Sean was taken to Mattel's Children’s Hospital on the third floor of the UCLA hospital building. He was placed in the ICU unit at around 3 AM.
On Friday morning (05-17-02), sometime around 8 AM, we met Dr. Jeorge Lazareff, the pediatric neurosurgeon who would be performing Sean's surgery. He showed us the MRI and told us he believed Sean had a Medulloblastoma tumor. He went on to explain a little more about the tumor saying it was located in the cerebellum portion of the brain, on top of the brain stem. Dr. Lazareff said he wanted to perform surgery to remove the tumor as soon as possible. Sean was prepped and rolling to the Operating Room by 10:00 AM.
I won't try to explain the emotions we all shared as Sean was wheeled away from us towards the O.R. I was so scared, and that is not an emotion I'm used to feeling! Kelly and I just clung to each other and cried as they wheeled him away. He cried too, and that was even harder to deal with. I can't really talk about it even still. It's just too hard to describe. I'm sure anyone with a child can put themselves in our position. We didn't want to think about losing our child, but just below the surface, we were scared to death that he might not come back.
The surgery took a total of about 7 hrs. The O.R nurse called about every hour to let us know how it was going. The actual tumor removal only took a little more than an hour. The rest of the time was taken up with prep time and closing him up after the procedure. Dr. Lazareff spoke with us after the surgery and told us he had removed 100% of the visible tumor. He explained that there was no way of telling if there were any tumor cells left and that Sean would need to follow up with Chemotherapy and Radiation treatments to kill any cells that were left.
Sean spent the next few days in the ICU and seemed to be making a great recovery. During this time he was visited by many family members and Pastor Dan from our church. The Doctors were very pleased with his recovery. They were monitoring the pressure level inside Sean's head and were hopeful that Sean would not need a "Shunt" (a permanent tube inside the skull to assist with drainage). Meanwhile Sean was receiving the best care from all of his nurses. We were very impressed with the professionalism of 99% of the nursing staff and were so grateful for the way they helped us.
About a week after surgery the Doctor's decided to remove the temporary shunt from Sean's head. The idea was that Sean's natural drainage system would take up the job of draining the fluid from Sean's skull. Sean was moved from the ICU to a regular room on the 3rd floor. It was nice to finally be able to sleep in the same room as Sean. Up till now, Kelly and I would take turns watching him while the other one slept in the "family" sleeping room in a chair-bed. It was a nice change from the ICU and we were grateful for the quiet time with Sean.
We weren’t able to enjoy the privacy for long. Sean started having headaches again. The symptoms were very similar to the tumor symptoms. Two days after leaving the ICU, the Doctors determined that Sean's brain fluid was building up again and that his internal drainage system wasn't keeping up. The Doctors said Sean would need an internal or permanent "shunt". The shunt would take the place of the drainage system, bypassing the area that was damaged by the tumor.
We were less than excited about another surgical procedure, but there was no choice. We arranged to have a "port-a-cath" put in since he was going to be in surgery anyway, and he was going to need one for his Chemotherapy treatments. The entire procedure took about 4 hrs and just emotionally wiped us out. Sean was taken to the ICU again for overnight observation and was moved to a private room on the floor the next day.
Over the next few days Sean continued to make progress on his recovery. We spoke to the Chemotherapy Oncologists and were given Sean's "Road-Map" for treatments. The pathology report came back and confirmed Dr Lazareff's belief. It was a Medulloblastoma. The doctors told us this form of tumor is very "treatable" and responds well to radiation. Sean was given a 60%-80% chance of recovery. We don't like to say survival although that’s what it really means.
Sean left the hospital on Thursday May 30th 2002 at about 5:00 PM. Two weeks from the day he went in. He wasn't walking well and continued to have headaches off and on (more often on than off). But we felt he would heal better at home. We were all so wiped from this whole experience that we just wanted to get home. I'm sure you're wiped just reading through this small novel, so you can imagine how we felt. I regret now not organizing a family gathering to celebrate his homecoming, but I think he may not have been up for it anyway.
So that's it! The condensed version (really!). I know I didn't mention God a lot in this narrative, but I would like to say that Kelly and I really feel that God has been looking out for us and we would really like to praise him and to thank him for all he has done and continues to do for us. We have many family and friends praying for Sean, and we would just really like to say thank you to all of them. We would also like to personally thank Pastor Dan and Pastor Joe from Christ Lutheran Church and all the wonderful people who have been praying for him.
We are now moving into the "treatment" phase. Sean will be receiving radiation treatments 5 days a week for 6 weeks. During that time he will be receiving a dose of chemotherapy called vincristine every Tuesday morning. The radiation will be directed at both his Brain and Spine at first. Later the focus will be the tumor bed itself. After the radiation, Sean will undergo a much more vigorous regimen of Chemotherapy. He will have to undergo eight 6 week cycles of chemo and will require an overnight stay in the hospital once each cycle. So it looks like we aren't quite done with UCLA Medical Center yet. The Chemotherapy phase should last about 48 weeks. At times during his chemotherapy he may require blood transfusions. Please check the updates section of the website for updates on this as we will at some point be asking for volunteers to donate!
Before we end this I would also like to thank our family and friends for being there for us throughout this ordeal. From the visits to the hospital, buying our food, watching our kids, cleaning our house etc... You have made this nightmare liveable and we love you all. Thank you again!
We have a long road ahead but we have faith in God that Sean will recover and live a happy and fulfilling life. Thank you for taking the time to read Sean's story and for your continued thoughts and prayers.