• MaxPK

Dads Update: 10-30-2016


which we knew was going to be tough, but nobody could be prepared for what was said, especially for parents when concerning your child. Just so you know how serious this is, if nothing is done we dont even have 6 months. That being said to do surgery it was explained that its not like the tumor is yellow and the brain red, when they go in it is not distinguishable, so they cut out the area. Which takes good with the bad. We were basically being given a quality vs quantity choice. Whatever the surgeon does is irreversible. I did pose the question, what would you do? He said if i’m Jacob, I don’t do it, if i’m the parent I’ve got some thinking to do.


It was only by Gods grace we were being held together. As the doctor is handing Kathy a tissue, and I’m trying my best to choke out discernible questions. We are both screaming out to God in our heads for Him to help us, we cannot make this decision. I ask if there is anyway we can talk to the neuro-oncologist while we are here. (as we are in LA, which was about 2 and ½ hour drive). Its then we start seeing God show up as the doctor says, “I can see you are hesitant for the surgery”. We are able to get squeezed in between a full schedule. After waiting a bit, getting called in, the doctor says, “I didn’t know how bad this would be, I’m not a surgeon, but you made the right decision not to do the surgery”. To be honest I don’t think that Jacob, Kathy or myself gave any inclination one way or the other, but then thats God, thats how He rolls. He made it for us, Thank You Lord. This talk was much more hopeful we go from, expect worse this is the best he will ever be, to this can be beatable. We have appointments next week 11-1 and 11-2 in LA to consult for radiation, planning and CT. Which they are also providing an apartment for the night so we don’t have to drive back and forth for those. We don’t have a start date on the radiation yet only that it will be 6 weeks of 5 treatments a week, then a follow up and review for chemo. We then try and make the ultrasound appointment we are over an hour late for, (still in LA), which they fit us in. Then find out he has a blood clot in his neck from the line they put in during the biopsy. We go from there to urgent care, to ER, then get admitted. They start him on thinners and we get into a (shared, another story), room at 2:30 am. After not much sleep we get released around 8:30 pm 10-27. He now has daily shots at home w/thinners for 3 months to let his body break the clot. The biopsy is being sent to Germany for testing, we are praying for it to be either WNT or Sonic hedgehog, as those are the most treatable types of medulloblastoma with the most promising results.


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