Hi! I’m MaKenna. But that’s not important. What’s important is this: Jose has cancer. Brain cancer.

Let me back up and lay it all out if you're shocked. If you’re not shocked and knew about some of the things – scroll down to where it says, ‘WHAT?’ on March 15th, 2022 part 2, to get all of the updated information:

September 2019: Jose and I were out getting breakfast. Just a little morning date. We went to Woodchucks (IYKYN); I got a BLT, and he got some French toast and pancakes. We eat, we talk, all is merry and bright. We go to leave, and he rushes in front of me to hold the door because he’s a gentleman. Then he went white. The entire left side of his body went numb. He started to fall, and I caught him (this is why we lift) and sat him down by the door. His vision is weird; he’s a bit disoriented. I call 911 because this screamed stroke, and we don’t mess around when that is even a remote possibility. An ambulance is called. We go to Tallahassee Memorial Healthcare. ER doctor does some scans because that’s what you do when the brain decides it doesn’t want to do the things anymore. She comes back and says, “there’s a little blip on the scans; we are going to do some more scans and see what is going on.” Jose was in the hospital for three days. He had ALL of the doctors coming in and checking on him.

The most important ones were the neurologists and neurosurgeons. They tell him that he has a parietotemporal brain tumor right next to his motor cortexes. They admit that even a biopsy is dangerous due to its placement and the risk of permanent paralysis. We asked for a referral to someone for a second opinion – TMH neurosurgeon gave us a referral to Dr. Maryam Rahman at UF Shands Department of Neurosurgery. Her opinion is that leaving the tumor is less risky than removing it. She plans to monitor the tumor with scans and keep seizure activity at bay with meds. Cool. We can do this. At this point, everyone is saying benign mass. Slow growing/non-cancerous bundle of cells that don’t need to be too much cause for concern. Again, cool. That much we can handle. An MRI every few months and a neurologist to monitor seizures won't harm anything but the bank account.

June 2021: Everything has been smooth sailing up until this point. The tumor has done some rub-a-dub on the motor cortexes (less than ideal), and instead of assuming everything is fine, we go get it checked out because it’s a brain tumor – you get it checked out. ER doctor tells us that the seizures are increasing but that the tumor is still the same (how? Idk, I didn’t go to med school). SO, they increase his antiepileptics, and we go on our marry way loving each other and living our lives.

***The seizures are not grand-mal seizures (aka tonic-clonic seizures). They are focal seizures that do not cause permanent brain damage or intolerable levels of pain/discomfort***

December 21, 2021: We are back in the ER. Why? Because Jose’s seizures are happening every hour, almost on the hour, and not giving any indication of subsiding. So what do you do? You take a sweet, sweet ride in the wee-woo wagon to get the scans and the updates and immediate IV meds to mitigate potential damage to the brain (because seizures). Scans are taken, and a new doctor comes in (never a good sign). New doctor (on-call neuro guy) tells us that based on the scans he had previously seen (from June), the tumor has doubled in size in 5 months (not the behavior of a benign tumor). He sends the scans to Rahman. Rahman sets up an appointment, and we follow up with the neurologist because chronic seizures, even if they aren’t causing permanent damage, are not great. The neurologist says to up the anti-epileptics. Not the answers you want, but those were the answers we got.

February 2022: We meet with Rahman. She tells us that leaving the tumor now outweighs the risk of surgery, and we need to do the things. So we schedule the surgery for Spring Break 2022 – March 14th, 2022, to be exact. WOO! Let’s go. Who doesn’t love spending a spring break being operated on, AMIRIGHT?!

March 2022: We have a hella intense pre-op schedule. SO MANY SCANS. All of the blood, even a little pee. His family is there. My family is there. Boy is surrounded by love and good vibes. Despite the reality of what’s about to happen we are all happy and laughing and trying to make the most of it. Games, campfire, all of the made from scratch enchiladas, it’s a bittersweet time.

March 14th 2022: Day of we get a call time for surgery of 6 am. JOY. No one sleeps the night before, everyone is freaking out, we all hug and head to the hospital. It’s me, Jose, Jose’s dad, Jose’s cousin and his mom because covid means you aren’t allowed to monopolize a surgery waiting room with 40 people who love and support the love of your life. He goes back for pre-op. We all (the 4 of us allowed to be there), get a chance to see him and talk to him and say goodbye before he goes under. His surgery started at 8:30 am. He went into recovery at 6:00 pm. So 9 or so hours later, we find out he made it through with flying colors. He’s okay, he’s alive, he is anxiously awaiting the next moment he can actually eat because it’s been a MINUTE due to pre-op rules. He is awake, talking and WALKING within an hour of waking up from anesthesia. He’s told the entire tumor was removed. He’s told that he should make an excellent recovery, but he needs to spend the night in the hospital for observation because they chopped into his brain. It’s protocol.

March 15th 2022: He’s recovering. Doctors in and out. Nurses in and out. Machines beeping. Pain and the need to pee after 5 liters of fluids were given to him over a 9 hour surgery (hydration is important, kids). Daytime nurse comes in and says he can go home. SWEET. Less than 24 hours after an extensive surgery must mean he’s doing amazing, right? Daytime nurse says specialties are doing their rounds and we just have to wait until everyone who has to come in and see him, comes in and sees him. Fine. I’ll get him some food, we’ll wait for the doctors, we’ll get out of here.

March 15th 2022 part 2: WHAT!?!? I come back from the cafeteria and there is a new doctor in the room. His name is Ashley Ghiaseddin, he’s a neurooncologist. And he’s speaking to Jose (now Jose and me), about some things. He says that due to the tumors rapid changing and growing (it had grown even more in just the time since the pre-op scans), and the fact that it infiltrated and decimated a blood vessel in the brain AND that there was evidence of possible diffusion in the T2 sequence of his post-op MRI – he thinks that this is a grade 3 APXA. Anaplastic Pleomorphic Xanthroastrocytoma (try and say that 10 times fast). He says that if this is an APXA, it is an aggressive, high grade malignancy. I almost vomited and potentially crushed Jose’s hand while dude was talking. He started saying that his approach would be chemo pills and radiation. He didn’t care where the radiation was done but he wanted the scans to be done at UF so he could keep a close eye. He said we will schedule an appointment with you in April because we need some time to test the tumor that was removed in order to find out the molecular makeup so that the treatment options are more targeted to his specific genetic needs. He also said that even though the tumor was removed, the potential for diffusion (think of it like little tiny tentacles coming out of the tumor and infiltrating surrounding brain tissue – impossible to remove because no one wants to be a potato, and the aggressiveness means it spreads far and fast), means that treatment needs to happen quickly to mitigate problems. He then goes on to say that if it ends up being a grade 2 PXA (same type of tumor but without the tentacles) – he would opt to monitor with scans so that when (not if, when) it changes, he can intervene quickly. Gotta love meeting new people. You learn so much!

April 13th 2022: D-day. A day that will live in infamy. The worst. Our fears were confirmed. The pathology came back with at least a WHO Grade 3 anaplastic pleomorphic xanthoastrocytoma, or a Grade 4 Epithelioid Glioblastoma. From there...everything started moving very quickly. They needed to start treatment as soon as possible, and they needed to be aggressive. Six weeks of chemo and radiation followed by 12 months of 28-day chemo cycles. We had 24 hours to decide where the treatment for the radiation would take place: Tallahassee or Gainesville. I had one question, “Is there evidence to support better outcomes for patients who receive treatment here at UF instead of off-site?” – the answer was a resounding yes. Because we choose life, we worked with the social work department to figure out temporary lodging for the fight of Jose’s life.

On April 25th, Jose started treatment. Chemo every day for 42 days and targeted radiation therapy to the brain every weekday. So far, he’s tolerating treatment well. We keep logs of all his symptoms, questions, everything to communicate with his oncology team. We’re doing everything we can. Even bought some glow-in-the-dark Kan Jam to avoid people (extreme immunosuppression is no joke) and the sun (he doesn’t need more radiation exposure) and still get a chance to play with some frisbees. We are terrified, but we are staying as positive as possible. Jose's oncology team is one of the best in the nation. We have every confidence in them. We just need some help.

Thank you for battling through my anxious ramblings if you have made it this far. I feel like transparency about the scary situations in life makes it easier to communicate how people can be supportive of you in your times of need. That being said, brain cancer treatment costs an insane amount of money. It’s not just the chemo and the radiation. It’s the scans, the labs, the visits with his radiation oncologist, the visits with his neuro-oncologist, physical therapy, occupational therapy, durable medical equipment, the travel, the supplies to help mitigate the effects of the toxic chemicals rampaging his body…everything.

If you are in a position where you can, please donate to Jose’s cancer treatment fund and spread this link as far and wide as possible.

Anything you can think of to do to help is appreciated.

Love,

MaKenna & Jose