Wednesday, November 16, 2011

Where do I begin...

Well it's been awhile since I've actually got a moment to sit down and write. Things have been quite busy and when I do have a moment to breathe I just want to sit in my pj's and watch trashy reality T.V. I know I know it's not the best T.V. but I'm addicted that's for sure. =)

So I guess I'll begin with Brandon completed 33 rounds of Proton Radiation Therapy. I have to say being at the hospital 5 days a week was exhausting, and I know for him having to be at the hospital everyday seeing other sick people was not his ideal of a good time. We did make great friends with a lot of the staff there and it started to feel like home towards the end. They were very accommodating to our kids they even let them in the radiation rooms to explain to them how the laser beam is getting rid of daddy's bug in his head. Aidan was the one with the most questions, he's our little cancer advocate these days. Everything he does or wants to do is to help people fight cancer. The other night he asked me when Brandon wasn't feeling so well due to chemo "Mom when will daddy's cancer be gone so we can play like we use too?". That moment right there tore my heart into million pieces. He's only 5 but knows so much as to what is going on. It's crazy how kids can sense when things are not right, they may be young but they do know when something is going on. I never tried to shield my children from knowing that daddy is sick. I think they should know to an extent about what he is going through and be able to ask us questions.

Now that Brandon is done with his radiation we have to wait about 3 more months to get an MRI to see if the tumor has shrank. If they did an MRI right now there is too much swelling and it would actually look worse than before. So we wait til January and cross our fingers that the tumor has shrunk or even better it's completely gone. As far as chemotherapy goes he will be on it for at least a year. He will have 5 days on and 23 days off, giving him a 28 day cycle. Our first round of chemo we did while he was doing radiation was going very well until about late August when his platelet count dropped really low, he had to stop chemo until they went back up. On labor day weekend we went to the horse races in Del Mar had a great time with our friends The Mills'. By the time we got home we noticed these red dots all up and down Brandon's leg. I thought that's really strange, I got out our cancer handbook from the hospital to look it up. That's when we realized he had Petichiae or Pikachu as Brandon calls it (you know the cute little yellow character from Pokemon). So we called the on-call oncologist who informed us to go to the ER. So there we waited for god knows how long before we were finally seen. They took his blood counts again to find out he was at a 12 for platelets. For those of you that don't know what a normal number should be, 150 to 400 is on the normal side. He's numbers were far from normal and the ER docs requested he be admitted and given a platelet transfusion. At least this hospital trip was only a couple days, and after the transfusion his number went up to a not so critical level and he was released to go home.


Since that day he took almost a month and half break from chemo to give his body time to heal and the ability to get his blood counts back up. About 3 weeks ago he started his maintenance chemo with the 5 days on 23 days off. They upped his dosage to almost 2x the amount they were giving him before. We asked the doc if his side effects would be much worse, he assured us that it wouldn't be. Well boy was he wrong, poor guy couldn't get out of bed for almost 7 days and didn't even eat. This was by far the worse I've seen him, not even after Brain surgery was he like this. I soon started to do some research and learned that this wasn't normal. At that point I decided that it may be in our best interest to see a new oncologist, one that specializes in Brain Cancer. That's where we found Dr. P at City of Hope. She is a brain cancer specialist and deals with cases like his everyday. She informed us that the dosage he was on for this round of chemo was just to high due to his past complications of having thrombocytopenia. The prognosis she gave us wasn't the best one, but like she said there isn't a lot of cases like Brandon to compare things too. They are going to treat this like it's a stage 4, that way we are aggressively treating it. So we hope for the absolute best outcomes and I just know in my heart that he will beat this. The kids and I need him around for a very very long time.

It's a hard thing to hear when someone puts a limit on your loved ones life. That day and week I cried for hours and hours. It took me awhile to tell myself I need to get these number out of my head, because if I let that define us he won't be here with us. Cancer is a horrible disease and to see how it breaks down the strongest of people is just crazy. I tell Brandon everyday you can't throw in the towel you have to fight even when your feeling horrible you have to push through and fight. I can't even imagine what he is going through mentally and physically. Everyday I wish I can take this pain away from him so he can go back to being his normal self. It's so hard to see someone you love this way. There are days I'm so mad that this has happened to us, but then I know things happen for a reason. People always tell me "God will never give you more than you can handle". Well if that's the case I think at times he's picked the wrong person cause my plate is beyond full and most days I feel like I'm at the verge of breaking to pieces. I know that I need to be strong for Brandon and the kids, but there are days I just want to hide and pretend cancer hasn't invaded our family.


Next week is Thanksgiving and wow did the holidays creep up fast this year. I'm already putting together recipes to make for turkey dinner. One thing I love to do is cook, I guess I find a sense of relaxation in it. I hope you all enjoy your time with your loved ones and don't take one minute for granted.

Looking great after 33 rounds of Radiation

A little set back to the ER =( 

 Transfusion Time, he looks just like Aidan here =) 

Thursday, August 4, 2011

The next chapter of our journey has begun...


So Brandon's journey into treatment has begun. The first few days weren't so bad I thought wow he's got this for sure, but then chemo and radiation reared there ugly head. The way Brandon explained to me the process of radiation seems like pure torture. Having your head strapped down to a table while a beam is shot between your eyes and one at the side of your head doesn't sound like anything I want to endure. I have to say he's been a champ through all of this. Even with the bouts of nausea and extreme sleepiness he still manages to make me laugh or smile everyday. When Old Brandon comes back even if it is for just one moment it makes me so unbelievably happy. I know he has to be going crazy just staying at home all day cause I know I sure would be. I try my hardest on the weekends to just get him out even if it's for a little bit so he can see someplace different besides our house or the hospital.

We spend 5 days out of the week at the hospital surrounded by doctors, nurses and other cancer patients. By the weeks end I'm tired of hearing about cancer and just want to hang out with my kids or go to dinner with friends. I know Brandon feels the same way he feels as if his life is just a schedule of appointments to see doctors, take meds and have beams shot at his head. I know I've been hard on him lately and he feels as if I'm always mad him. I tried to tell him that "I'm not mad at you I'm mad at the cancer". I'm mad that cancer has turned our world upside down, I'm mad that I have to argue with the insurance companies,HR depts and state disability to fight for things, I'm mad that we have to miss our son's football practice every night cause we're at the hospital. I miss my kids more than anything. Between being at work 8 hours a day and and the hospital at night I feel like we don't get to see them as much. I know this is all temporary but it's still hard.

A few weeks ago we had a charity poker tournament for my hubby. It was a great success, we had so many donations and prizes from friends and local companies. I wish I could of won some of those prizes who wouldn't want a free 5 days in a RV thanks to El Monte RV or a Brazilian Blow Out thanks to Kerri Huddleston, a surround sound speaker system from Mactus Integrations, a margarita party pack from Rocklin Packaging, and much much more. We have great friends and family that are willing to stand by our side through all of this. Everyday I thank God for them. If you don't have a great support system there's no way you could do this alone.

At the Grey 4 Gandy Poker Tournament

To all you caregivers out there I tip my hat to you. This is a job that runs 24 hours a day with no breaks. This job will drop you to your knees some days cause you just don't know how much more you can endure. There are some days I drive to work and tears constantly roll down my face cause I feel like I have to wear so many hats to make everyone happy. Last week my hubby started to lose his hair I tried to remain calm and tell him "it's ok, it's ok it will grow back", but I know he could see the fear and shock in my face. I do know in time it will grow back and I will see his beautiful head of hair again, it just angers me that Cancer is taking this away too. It like seriously haven't you taken enough already, all we want is a break. I want one morning for my hubby to wake up and not feel sick or extremely tired because of the Chemo or Radiation. I just want life back to normal, but I do know our only way there is to go through these steps. There is a light at the end of the tunnel I just haven't seen it yet. But when I do I will be running full speed towards it's.


My Hubby's beautiful hair
The torture chamber called Proton Radiation


Thank you all for being there and supporting us on this journey. It's a long one but will be worth every minute of it in the end.

Thursday, June 30, 2011

Learning to Smile Again...

My sister sent me a message the other day while she was out. She told me "I'm finally learning to smile again". At that moment I didn't know what she meant so I sent her a message back stating "Huh". She said the last few months I've kind of been sad/depressed with everything that's been happening but now I'm learning to smile and be happy again. Then I thought to myself when was the last time I smiled cause I was really happy and I couldn't remember. When I'm around people lately I notice I do the fake smile or laugh just so no one knows that I'm really crying or upset inside. I know things these days aren't the easiest but I need to really find that "Place of yes" and learn to smile again. I feel my days are consumed with work, kids after school sports and constant phone calls to insurance companies and doctors offices. Running Brandon's health and medical needs is almost like having a 3rd job, but it's something I would not want anyone else to do. This way I know he's getting the best care possible, because if you know me I'm very hands on and aggressive when it comes to things like that. Trust me the poor nurses and medical assistants at the hospital know me very well, we're even on a first name basis. Hahaha

So my new resolution to myself is to take at least 1 hour a day to just breathe and relax. I'm go go go non stop til about midnight every night. I've noticed that I'm starting to get very run down and I will never find a happy place at this rate. I also suggest all you other mommy, daddy's, wives, husbands and everyone else do the same. Take a step back and learn to enjoy the simple things in life even if it's just watching your favorite TV show, reading a book or watching your kids play outside. Go and find that place that gives you peace and happiness.

A little update on Brandon a lot of you ask when his next post will be, hopefully soon. He's a talented and creative writer but I know with all the meds he's on his sleep schedule is far from normal. He can tell a story like no other and even when he rambles to me about programming or gaming I can still listen to him for hours even though I'm clueless what he's talking about. It's just because he makes everything so interesting. So as for now no more surgery until its deemed a necessity. Remember my whole Quality vs. Quantity post you'll understand more by reading that. I had a very hard time accepting Brandon's choice that day but in the end it is his choice and he has to be 100% ok with his decisions. I'm merely a sidekick going to root him on until we hear those words "Your in Remission". Next up is Proton Radiation and Chemotherapy. I hear great things about proton radiation and I have full faith Brandon will pull through a winner like always.

I hope you all a great and memorable 4th of July.

Here's some pics from the past of my babies in there red, white and blue.





Thursday, June 23, 2011

Father's Day

This pass Sunday was a day we spoiled and honor those men that helped make us the people we are today and raise us like we are there very own. I'm proud to say I have 3 great men in my life, My dad, my husband and father in law. A little unique fact about my husband and I is we were both raised by our step fathers. These are two great men that stepped up to the plate when our own biological father could not. I have to say they both have done an amazing job raising us and I thank God everyday for bringing them into our lives. Even though I was not able to spend Father's Day with my dad I want him to know I love him so very much and thank him for always being there when I needed advice or a shoulder to cry on. Also to my step father Doug for raising the most amazing father and husband I now have today.

This father's day we decided low key was better and we did a BBQ at our in laws house. We ate yummy Mexican food til I could no longer button my pants and had freshly made chocolate chip cookies and milk for dessert. We also watched movies, kids played Just Dance on Wii, and had some great conversations. I hope you all had a wonderful Father's Day as well and always remember to tell that father figure in your life you love them.

Here's a little video I made for my hubby, I hope you enjoy it.
P.S. if it makes you cry I'm sorry I bawled my eyes out for 3 days making it.





Aidan playing Just Dance.
video

Daddy and his Mini Me

Daddy and his Princess

Friday, June 10, 2011

Quality vs. Quantity

This has been an ongoing debate in our household since we found out about Brandon's Brain Cancer. This is a debate I wish we could of gone our whole lives without having, but now that we are in this position it's a much needed discussion. My views on everything have been more of a selfish one. I want him here next to me until were old and grey and he has to change my depends lol. I've done lots of endless research and spent many nights not sleeping trying to figure out the best course of treatment for this type of cancer. What many doctors and hospitals suggest is to remove as much of the tumor as possible. This gives radiation and chemotherapy the best chances at killing what tumor cells are left, but in Brandon's case this is a hard one. His tumor lies in such a high real estate area where he could potentially never speak again and may have weakness on the right side of his body. Dr. S discussed that he wants to try a new procedure to keep him awake during surgery so there is a lesser chance of this happening. As you may know they tried to do an awake surgery the last time but there were issues with the intubation tube and the anatomy of Brandon's neck. This time around he won't have an intubation tube down his throat but will be given 2 different medications to perform this and wake him up when it's time. Next week they will be performing a Functional MRI to see exactly where and what parts of the brain the tumor is affecting. This is one thing I'm really looking forward to, since it will give us all a better picture of what is really going on.

So back to our debate. I have to say in my heart I want the functional MRI to come back and say they have a good chance of resecting part of the tumor. But on the other hand I know my hubby is not fond of the fact of having surgery again, being there's a chance he will not be able to speak. His aspect on everything has been Quality of life. If they say he only has 5 years then he wants to be able to at least speak to his kids and tell them everything they need to know in that 5 years. Instead of having 10 years of not being able to tell his story. I have been the selfish one wanting the most time I can have with him, but I understand exactly where he is coming from. I guess as a mother I would want all the time in the world to be with my family, but it would be hard not to speak to them and tell them what life has to offer and how to become the most amazing adults I know they will be one day. Brandon always tells me "You may say you would want the surgery now cause your not the one who has the tumor". And he's right I do say that, but would I feel the same way if I were in his shoes. I don't know, that's the hard part. So now we wait for our next chapter in the journey to start. I know Brandon feels very anxious to get all of this started and so do I. I just want him to have the best chances of fighting this beast and kicking it's ASS. Hopefully next week we will have more answers for all of you. Keep those prayers and good thoughts coming our way cause we need every single one of them.

P.S. we had an amazing time in the east coast. It was so nice to see my family and spend time with some amazing friends over there as well. For that one week it felt like cancer wasn't around and we got back to our normal lives. Let me tell you we ate so much good food it was worth the extra pounds I put on. And if your ever in NYC make sure you to stop at Five Napkins, those burgers, fries, taquitos and S'mores Shakes are to die for.

For those of you wanting to purchase t-shirts click here. Thanks to those of you that have purchased them already. I will be shipping those out later this week.

XOXOXO,

Momo
The loves of my life
My mini me
My amazing parents..Thank you again for making our trip one to remember
My hubby looks hot..me not so much with my fro lol
Our little family

Oh and BTW cancer after were done kicking your ass we will be going here. Make sure our cabana boy or girl has my umbrella drink waiting for me as soon as I hit the sand. =)

Bora Bora..my dream destination


Wednesday, May 25, 2011

Wearing Grey 4 Gandy



Hi ya'all our great friends the Pfutz's have created a shirt to support Brandon and the proceeds will go to help with Medical Bills.

There are 2 designs to choose from or a donation link at the bottom of the page. One is Brandon's journey with brain cancer and the other is F*ck Cancer.

Thank you all for your continued Love and Support towards our family and throughout Brandon's Battle. WE WILL FIGHT THIS!




















Shirt Options
Sizes
Colors
Shipping/Pickup?






If you need to view spec sizes of the T-Shirts here are the links:

The Tank Tops will be made with American Apparel shirts so this is why they cost a little more.
Here is the website for the specs on that shirt:







Monday, May 23, 2011

Graduations, Birthdays, Doctors and more


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 2glioma 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.