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 =)