Phewww this has been a crazy few days. I don't think I even had 5 mins to just breathe and relax. It was go go go all day long. Last week was filled with back to back birthdays, graduations and doctors appointments. I was hoping this week would be a bit more quiet but I'm out of luck there.
So let's get this story started. Friday, May 20th was a jammed packed day from 7am til 3am the next day. The day started off by my little boy graduating Pre-Kindergarten. Who the heck knew that they even had a graduation for this grade but I guess they do. He was so very excited to wear his nice outfit and sing his heart out on stage with his class. The last few weeks I have heard God Bless America at least 100x, I think I know it word for word now. So as we were sitting there waiting for the graduation to begin they handed out brochures listing each kids name and what they wanted to be when they grow up. We had the standard Police Officers, Teachers, Mommies, and Fire Fighters listed down for most of the kids. So I search for my sons name and low and behold my son puts down he wants to be a NINJA. Seriously my son wants to be a ninja we he grows up, he has played one to many video games. I couldn't help but laugh and also be proud of him for not conforming to the norm and thinking outside the box. So when it came time for them to announce Aidan's name and list his future occupation I did what any proud parent would do. Yell and scream with happiness at the top of my lungs. I have to say he did get biggest round of applause and laughs from the audience. After graduation we went to a local pizza parlor and enjoyed some pizza, ice cream cake, cupcakes and a edible arrangements sent by my momma from Jersey. Wowza I was completely stuffed after that.
Cute little Baby Meghan..love the bows
The boy cuzzy's
Aidan and Mrs. Laura
My little Princess cheering her brother on
Aidan and his silly grad glasses
Next up was my hubby's follow up doctor appointment with the neurosurgeon at Loma Linda. A lot of you have asked what happened at this appointment. Many of those questions were answered in
Brandon's Blog. But I will go into a little more depth of what went on. Since I carry this handy dandy notebook Sheila gave me since she went through the same thing with her husband. Which I have to say is the best piece of advice I have gotten from someone on this journey. That notebook goes everywhere with me. I log all of Brandon's seizures down in it, questions for the doctors, meds and much more. We went into the appointment wanting to get some general questions answered by him. But I think we left with more questions than we came with. So the one of questions we had was why the first surgery did not go as planned. We learned that the anatomy of his neck makes its difficult to get an intubation tube down with a little cup on the end of it. So they had to scratch the awake surgery and just do a biopsy. With most surgeons they only do a biopsy on one or two areas, but he took 12 samples so they could get the best possible results as to what type of cancer this is. So it is a Stage 2
glioma or
diffuse astrocytoma. The pathology report does state they can not rule out Stage 3 but for now it does look like it's a Stage 2.
We are now given two options to proceed with, Surgery or No Surgery. First we had thought surgery was off the table since they could not get him awake and how the tumor is very deep within the brain. But we have now learned that there are other options to get him to remain awake without an intubation tube. The reason the surgeon wants to try surgery again is to remove at least half the tumor so when Brandon does Chemotherapy/Proton Radiation it's fighting a much smaller tumor. Our ultimate goal is to not have this turn into a Stage 3 or Stage 4 which is much harder to fight. Like with any surgery there are risk. The biggest risk involved here is the ability to speak again. If they could get him awake during the surgery there is a better chance of not harming the broca area, but if for some reason they can not the chance is much much greater. The other option is to watch the tumor like a hawk. Constant MRI's every few weeks, then every couple months. This is also coupled with Chemotherapy and Radiation at the same time to try and shrink this tumor. If at any time the tumor continues to grow he would have to have surgery. We have a little over 3 weeks to make this decision. We can not start radiation until the decision has been made. This is since radiation leaves scar tissue and it will be a lot harder of a surgery once this has been done. He also wants Brandon to talk about all of the options with family and friends, and make the best decision possible.
So here we stand wondering what route to take next. Like I've told Brandon he ultimately has to be the one that is 100% ok with which route we take. In my heart of hearts I would want him to do surgery now, so that we have the best chances at fighting this demon. But on the other hand do I want to take that risk of my husband never speaking again, NO of course not. So I'm torn on what is our best course of action to take and I can't even imagine what Brandon is feeling at this point. These past few days have been rough on him. With the changing of seizure meds, weaning off dexamethsone (which is now called the devil drug) and taking pain pills for the side effects, his sleeping patterns are far from normal. I know depression sets in every once in awhile with him and sleep seems to be the only place he feels normal again. It breaks my heart to see him like this. I haven't had much time to deal with sadness or any sort of depression at this point. My days are filled with working 8 hours, taking Aidan to school, constant calls from doctors, P.A., nurses. case workers, social workers, arguing with the local pharmacy and insurance company, tae kwon do practice, making dinner, bathing kids, putting kids to beds, and making sure Brandon has taken all of his meds for the day. By the time the day has ended I'm beyond exhausted. I can barely keep my eyes open to watch my favorite reality TV. My poor house looks like a tornado ran through it. One day I will be able to clean it again. For now it's making sure everyone is taken care of and that Brandon is receiving the best care out there.
Ok enough complaining let's talk about my birthday party Old Lady style. Some of my closest friends joined me for sushi at my favorite spot. I ate yummy yummy sushi til I couldn't eat any more. Then it was off to the local casino for Bingo and Penny slots. Ok let me say this playing Bingo with people who have never played before has to be the most hilarious thing ever. First rule of Bingo is when they call B-5 you only look down the B row not across the whole damn card. Then we had the Bingo caller with the sex hot line voice, oh and we can't forget when Brad thought he had Bingo but really didn't. I was in tears laughing the majority of the night. Next up was Penny slots it was so packed here it was hard to find a good machine. But we finally found one of our favorites Wizard of Oz and I won one of the progressive hands which was only $53.89 but hell that was $53.00 more than I had. Then Alia was another winner winner with her Bonus round making her a $100.00 richer. With all of our hootin and hollarin we had a huge crowd around us for our little winnings. You would of thought we won million dollars. But that's how we roll at the casino. By the time 2:30am came around this momma was a little tipsy and ready for bed.
In the elevator in route for BINGO
Brad showing us his non-Winning Card
My sissy and I playing penny slots
All my girly's except for my preggo pop Crystal
The boys
The next day I was up bright and early to sign Aidan up for Pop Warner Football and run more errands. That night we had another birthday to celebrate at the W hotel in Westwood. It was nice to get dressed up and have a few hours out with my hot hubby. But beware when you drink in LA it will cost you an arm and a leg. I had 1 Bellini and ordered 4 small shots for us girls and it cost me $80.00 I almost fell out of my chair and closed out my bar tab as fast as I could. I think I like being the DD most of the time it's a lot cheaper. By the time Sunday came around I was ready for a Mickey Mouse fix an away we went. The happiest place on earth always makes you feel better and so does their churros. The kids, my sis and I had a blast riding rides and eating lots of junk food. I'm pretty certain all of the walking and carrying kids worked it off, or at least I hope it did.
In a few days we leave for NYC/Jersey and we all really need this time away from here to just relax and enjoy one another. Cancer is a topic that will always be on our minds but maybe for a few days we can pretend it's not there. Since when we get back decision have to be made and treatment will begin. We will be seeing lots of doctors and hospital walls but the memories we will make while on the East Coast will keep us smiling for awhile. So ta ta for now. I'll blog some more after our visit at the proton center on Thursday. It's a 3-4 hour appointment and we're bound to learn a lot more about this journey.
