A little about Jacob



Life hasn't exactly been easy for Jacob Kay up until this point, yet he's never been one to complain. Quick with a smile, Jake has often been the source of laughter and silliness in our family. Always one I could count on to stay up with me into the wee hours of the morning, chatting my ear off while I worked long after everyone else went to bed. Lover of technology, computers, VR, video games and incredibly talented at designing models and doing all the technological things.... the pandemic and online schooling wasn't easy, and this summer we found out why Jacob always felt so tired...all the time. In August Jacob was diagnosed with stage 3 osteosarcoma of the jaw (a very rare cancer for kids his age).



The New Normal



Jacob was really looking forward to finally going back to school at Newport Harbor High School with his friends after 1.5 years of dreaded online schooling. Looking forward to all the senior year of high school events and activities and just gearing up to head back - when the diagnosis came through and his whole world turned upside down. That smile that has lit up our lives will never be quite the same.



And so it begins





Instead of reuniting with his friends and registering for classes, Jake spent August and September undergoing all sorts of tests, biopsies, scans, etc. Because of his young age it was determined that he be given the strongest chemo drugs available (and not to be used on adults) and because of this he spends 1-2 weeks in the hospital for each round of chemo. The drugs also come with really severe side effects, including the obvious hair loss, nausea, vomiting, lack of appetite, weakness, and also decreased liver and kidney function. So far Jacob has undergone 3 rounds of chemotherapy to shrink the tumor and earlier this week had major surgery to remove the rest (hopefully).



Removing the cancer





The surgery itself consisted of several procedures including: Total right maxiliectomy Right neck dissection Fibula Free-Flap Septoplasty Tracheotomy Basically during a 12-13 hour surgery they had 3 surgical teams - one to remove most of his jaw/teeth/maxilla/roof of his mouth/under his nose, etc completely.

Another team then came in and removed his fibula and reshaped that into a replacement for his jaw and facial structures and a 3rd team worked on his neck and lymph nodes.



complications and recovery





While the surgery went about as well as could be expected there have been a series of complications that have made recovery very difficult. Post-op things haven’t been going great. Last night he had a lot of bleeding from his nose and mouth and some blood pressure spikes. And a fever that started as well that hasn’t been responsive to Tyelenol, hovering around 101 F. Today the fever has hovered around 103.5 most of the day in spite of antibiotics, tylenol and multiple ice baths. They’ve sent cultures to the lab to check for infections. The bleeding increased (or at least didn’t abate), requiring a blood transfusion, and he also begain having some heart arythmias. They also did a chest x-ray because they suspect he may have the beginning of pneumonia - for sure he at least has Atelectasis (collapse of the lung which then fills with fluids). He’s also been really struggling to breathe - they think something happened while one of the residents was cleaning out his trach to cause a lot of inflammation, but they’ve got the respiratory specialist involved and hopefully that will be resolved soon. But the hardest part (for me) is that his pain has been very difficult to manage, so they’ve been trying some new things. All in all - not the easiest recovery.



the long road ahead



There have already been several weeks in the hospital and there look to be several more. At this point Jacob has a tracheostomy breathe and an NG tube for nutrition - he is going to have to re-learn how to breath, talk, and eat again once he heals. Until then he needs help with all of those things. He also has more rounds of chemo to undergo once he is strong enough and has recovered from his surgery.



24.12.2016



YOUR HELP IS SO GREATLY APPRECIATED. HERE'S WHY.



As you can imagine, the costs of all of these hospital stays and treatments have been immense. While Jacob does have decent insurance, there are so many out of pocket expenses and co-pays, it is quite overwhelming. Jacob's father is disabled and essentially bedridden requiring his own caregivers and has not been able to work at all in the last six years. His mom has already been maxed with other medical hardships such as another son with lissencephaly, another very rare condition that is extremely disabling and also terminal. Both his mom's and dad's family have been stressed to the max prior to Jacob's cancer diagnosis and any help that can be offered will be so greatly appreciated. We understand as much as anyone how hard-earned dollars can be hard to come by - and difficult to part with. So we also appreciate any and all prayers, sharing this gofundme and donations of any size! We all want to see Jacob restored to health and a chance at life! If you'd like to see other ways you can help Jacob Beat Cancer please visit www.jakebeatscancer.com