Saturday, May 18, 2013

Flashback #4 - The aftermath

David came home and hid. All the kids had various forms of sniffles...Rachel was throwing up...I had mastitis and a cold. It was awful! But, I got the cleaning done, bought lots of sanitizer, David came home and never did get sick, praise God!

When he was released, they sent home a packet with all the care instructions. Boy, did we read them closely. One of the big points was that he was never supposed to be alone for two weeks after surgery. I was told to watch for changes in behavior, especially if he started "acting dumb." We believe this was an indication of bleeding in the brain, which of course is serious. David was also still dizzy and a bit unsteady on his feet, so needed to make sure that there were no falls. Thankfully I had friends who were willing to keep ferrying my girls to school every day, so I could be with David. He was supposed to keep his cut open and hats, no swimming, don't rub it in the shower. He could pour soap and water over it, but no scrubbing. Of course, David being the hypochondriac that he is...he kept not scrubbing for weeks, to the point that the neurosurgeon was like, seriously, you can clean this now...hahaha

  • It's great having David home! The days are pretty good but the nights have been tough again...he's having a hard time sleeping which is a bit discouraging. But he was able to come downstairs twice yesterday, once to watch the texans suck it up, lol, and also to eat dinner with us, which was really nice.

He was still on those steroids at this point...which made sleep elusive! They gave him a prescription for Ambien, which worked great! for four which point he'd pop up all perky and ready to start the day...ugh! I was SO tired! Of course, we were also emotional during this was really hard to start trying to adjust to our new reality. We did a lot of praying, reading the Bible, talking, and crying. There's nothing quite like being knocked on your butt to make you reevaluate your priorities!

After a couple more days being home, I had to bring Red One to the doctor. She had actually been complaining for a couple of weeks of her back hurting. I was totally unsympathetic (remember, she's my hypochondriac child)...I kept telling her, "you sound like an old lady, you're fine!" Of course, she failed to mention the rash all over her body...and it was the fall, so she was in long sleeves and pants...until one day she had a rash on her face, and the school nurse told me it looked like Lyme disease...are you kidding me?!?!?!? I was able to get her in to the pediatrician before they closed, and sure enough, she had the stereotypical bulleye rash ALL over!!! I'm so done at this point!

  • Under the category of it never rains but it pours....just found out today that Laela has Lyme Disease?!?!?!?!? Seriously????? Of all times, lol. She is now on 4 weeks of antibiotics, but the good news is she's NOT she can still be around Daddy, haha.
    Mary Catherine Woolley Yeah, those spots on her face were the last straw, I was able to sneak her in before they closed. 

Thank the Lord, Lyme Disease is not we didn't have to quarantine her. I kid, barely. She must have picked up a tick at my in-laws going for a hike before the weather got cold. Poor kid!

Of course, David is still freaking about CSF leaks...he kept smelling weird things like incense, his right arm was tingling...but nobody took it very seriously. They said it was probably just how his arm had been positioned during surgery...his sense of smell was probably off due to the loss of sense in one nostril. He even took a picture of a booger he coughed up because he was worried it was part of the sinus seal. Don't worry, I won't post it and put you through that particular trauma. Unfortunately, when he called the on-call neurosurgeon (not Dr Schwartz) he was very dismissive and not understanding at all...could tell he didn't really care, which was a shame. We did get some answers to these issues when we met with the oncologist. He never did have a CSF leak though :)

The next week, we had our follow up appointment with the neurosurgeon. He took out all of David's staples (and scrubbed his head of all the dried blood, lol). No more Frankenstein look. The cut was still super noticeable though...big ole scar crossing his head. He was a little self-conscious of it, but I told him it made him look tough!

The first part of the pathology report had come back...they knew what it was. Dr Schwartz broke the news that, as he had suspected, David's tumor was an Oligodendroglioma. (We affectionately referred to it as Ollie) Oligos are not common at all, I believe about 2% of brain tumors are oligos. The most common (40%) brain tumors are also the most deadly, so we were thankful it didn't fall under that category. Oligos are generally slow growing...the doctor believed that going by the bone erosion in David's skull, this one had been there are really long time, and finally ran out of room, causing the headaches and pain. The complete pathology was still processing...they were testing it for some deletions that could make it more susceptible to chemotherapy/radiation, but we wouldn't know for a bit.

At this point, Dr Schwartz was giving us all the information about Oligos. They are an invasive type, meaning that the cells are integrated with brain tissue, which practically speaking, means the doctors can't just cut it all out. I mean, I guess he could, but you probably wouldn't have much brain function left. This is what makes malignant brain tumors suck so much. If you have cancer in your arm, or whatever (unless of course it has spread), they just cut it out and as much around it as they think will help...but you can't do that in the brain. Thankfully our surgeon is very talented and was able to get as much out as he could safely without seeming to damage David at all. He also started giving us 5 year percentages, which I know is how they usually rank the cancer survival rates...but that was just super depressing. Nobody wants to hear that. I know it's his job, and he was very positive, but still, horrible!

  • soooo, David had his follow-up appt today with the all his staples out, hooray! ;) The pathology report is mostly back, we do know what the tumor is, it's called Oligodendroglioma (try saying that 10 times fast...or even just once, lol), it's a low-grade malignant tumor, which basically means it's slow growing, which we already knew.
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    • Mary Catherine Woolley He will definitely be having chemo and radiation. We meet with the Neuro-Oncologist tomorrow to come up with the actual treatment plan. Hopefully additional pathology results will be back which will help them know how the tumor responds to chemo/radiation/etc, so the plan can be tailored more specifically. Apparently this is one of the better brain cancers to have, if you must have one, so it's not the best news but not the worst either. This is something that will have to be monitored the rest of his life though, they say that they never call it cured, must be vigilant about it always. We cannot express how much we appreciate all the thoughts and prayers, and hope to continue to receive them in the future! Love you all!

Dr Schwartz was very insistent that we meet with the Neuro-Oncologist and had already set up an appointment for us the next day. He said that she was very talented and it would be good for us to get going on that. He basically released David so that he could begin treatment.

Here is David's take on this time period. He made this video in early December it's still a bit fresh ;)

Dunno why it's so big! whoa...oh long as it works, right? Next Flashback covering the start of our oncology visits soon...