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TeamCoben Fighting Childhood Cancer

"Mrs. Swanson... Do you understand what I'm showing you? These are the results of your son's blood tests. As you can see we measure the red cells, the white cells, the platelets and the 'other' (lights in the room suddenly seem very bright, and the temperatures are very cold, I have chills... Not because I do not understand what I am looking at but because of all the white coats gathering around me, I am certain that this is NOT good news) "As you can see, the 'other' category is currently making up 96% of your son's blood count. I am sorry to tell you that Coben has L e u k e m i a a a h h h h   Do you have someone you can call to be with you? We need to move your son upstairs immediately, he is in critical condition" So how did we get here? Monday, November 9th, our son Coben appeared to have what we thought was the flu. With an overall weakness and slight fever I had him get ready for his day at school but as we arrived I realized he was in no condition to make it through the day so I took him to my office where he ended up vomiting, reinforcing my day's diagnosis. After a week off, we made an attempt to start school the following week but when I picked him up on Monday November 16th, I could see his skin lacked any color, he had dark circles under his eyes, swollen lymph nodes and he had started to complain of some leg pain. After picking him up I took him directly to his Dr. where I was questioned about the amount of bruises on his body, told he was fine and to just take him home for rest. Tuesday, November 17th, I went in to wake him up for school and he wouldn't put his feet on the floor because his legs hurt. Knowing how much Coben loves school I knew he wasn't faking being sick, but it didn't make sense that his legs would hurt for no reason. I helped him get dressed with a feeling in my gut like something wasn't right. I got both kids into the car and as I drove towards work I started to configure a plan where I would drop little sister off at school and just swing him by an urgent care specifically for kids, somewhere that could maybe help him pinpoint where the pain was coming from. We sat in the ER of CHOC Children's Hospital for about 2 hours where Coben assured me he was tired of waiting and I even contemplated just leaving once or twice, but figured I would still be without answers so let's just wait it out. After getting checked into a room, Coben was met with an amazing nurse named Nik who walked him through the blood draw process and started asking Coben questions about the source of his pain and I immediately knew I was in the right place. He was able to get an IV into Coben's hand and we also had some X-rays taken of the mysterious leg pain and just for precaution, a chest X-ray. We spent some time reiterating the same symptoms we had just described the day prior, and we were told there would be some tests they'd like to run... only for 30 minutes to pass, the test needed to be run again... and then shortly, AGAIN! As my phone was running out of battery I started sending out messages that something didn't seem right, asking my little sister to pick up Saffryn from school and meet me at Children's Hospital and calling Jon to let him know I think he needed to be here... and very quickly. By 6 pm Coben was admitted to the PICU (Pediatric Intensive Care Unit) and family had started to arrive to Room 618 of CHOC where we would immediately be put to the test. It was certain that Coben had cancer, his white cell blood counts were at 996. (Typical white cell counts are about 3 to 5) Coben's blood was so toxic that it was amazing he was conscious let alone alive and Dr's worked though the night to try and clean his blood by sifting out the excess leukemia ridden white cells as Jon and I sat helpless on the small blue couch all through the night, unsure of what to do or say. November 20th, with all the attempts to clean Coben's blood the unimaginable and least expected result happened... he had what is being called a "spontaneous brain bleed" where his brain started bleeding and now lacked the ability to clot or stop bleeding, resulting in his skull being filled with blood causing him to loose consciousness, resulting in a whole new level of treatment and worries. We sat shaking all night as Dr's and nurses aimed to steady him for an urgent brain surgery to alleviate the pressure and reduce the possibility of permanent brain damage and paralysis. Because of his inability to clot, only a drain could be inserted until a few days later when the pressure could no longer be controlled via drainage and an urgent craniectomy became necessary at the risk of him losing his life. We have now been residing in CHOC childrens hospital for more than 2 months where Coben has taken many steps forward, but almost as many back. WHAT WE NEED? While so many have reached out to offer assistance, and with Coben's Collegewood Community offering moral, financial, physical and spiritual support... we were hoping to hold off on 'asking' for assistance until we were sure what we would need. Unfortunately we have run through our resources while we still have another month or two to overcome before we can contemplate taking Coben home. It has become clear I will be unable to return to work as caring for Coben is, and will continue to be, a full time job. Being trapped in a hospital room we have not had the luxury to be thrifty or frugal with even basics such as parking and food. We've unfortunately had to pay for convenience, Including months of rent and utilities for a home we have not been living in. Our goal is to pay off as many bills as possible in advance so we won't have to worry about those stresses once we're able to take Coben home. While there is not a specific number on paper since it will be MONTHS before we will see any hospital bills, we'd like to pay off our van so we can be well equipped to transport Coben in a wheelchair. We have to consider things like diapers, rent and utilities, help for schooling, rehabilitation equipment and if there is any extra funding on-hand it will go to establishing our #TeamCoben Foundation in an effort to help give back to families who fall into circumstances just like ours. While we have a minimum of three years of treatment ahead for us, I know this will not be the only time we will need assistance, but I hope until we get into a safer place where I can put my brain and skills to use we need to rely on our extended family, friends and community to help us reach that plateau. It takes a village to raise a child, or so the saying goes... so what does it take I wonder to raise a child who has to start over? We offer an overwhelming amount of thanks and gratitude in advance for any and all assistance.     
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Donations 

  • William Fusselbaugh
    • $200 
    • 5 yrs
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Organizer

Brittany Joiner Swanson
Organizer
Yorba Linda, CA

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