Tuesday, November 24, 2015

What a Year...

Hi Everyone!  It's me, Maggie!!  I know that I haven't posted in a while but I thought today would be an appropriate day to start blogging again.  Two days from today will be one year since those terrifying words were spoken to me, "You have cancer."  Looking back at that day, I didn't think I could survive the rest of that week but here we are almost a year later and I am still smiling and enjoying everything about life!!!

This morning, I met with my oncologist and got the results to my most recent set of scans,which were yesterday.  Those pesky little tumors are still stable, they haven't gotten any smaller but they haven't gotten any bigger.  I don't know about you, but that is a huge win in my book.  I was relieved when he came in and said it, it has been a rough couple of sleepless weeks for me.  Ambien and I have become close friends :).  Since everything is still stable and I have pretty much plateaued with the current chemo regiment, VAC/IE, it was decided today that I would put the last two cycles I have left on the back burner (we will have them in our back pocket in the future if needed) and move on to the next phase of treatment.  Next Thursday, December 3rd, I will be meeting with one of the surgical oncologists that works with a lot of patients that have cancer in the abdominal area to see about having more surgery to try and get rid of these pesky tumors along with the lymph nodes they are living on.  I hope this can happen one way or another as I would like to get these ticking time bombs out of me :).  I will also be starting on a new oral chemo pill, hopefully in three weeks.  My oncologist's office has to get all of the paperwork into the insurance company so they can review and hopefully approve payment for this new drug called Votrient.  I am actually excited to start this one because my hair will grow back, it's really cold already and I am sick of my head freezing all of the time.  Also, I want my nose hairs back!!!  Having a consistent runny nose for the last year has not been all sunshine and roses let me tell you!!  I have learned a lot about taking things for granted this year, but I for one will never take nose hairs for granted ever again :).

I know since I haven't updated in a long while a lot of amazing and fun things have happened in our world.  In August, Don, his parents, the kids and I were fortunate enough to take the most amazing trip to Disney World.  We had the opportunity to stay at the most wonderful hotel and resort, The Hilton Bonnet Creek.  Let me tell you, if you are ever in Orlando and need a place to stay, please, please choose this hotel.  It was amazing and they were so amazing to us and took great care of my family while we were there.  I can't say enough good things and they also have this pool!!!

Image result for hilton bonnet creek pool

If this doesn't make you want to stay there than I don't know what will.  Disney World was so amazing and we had so much fun, but I really new that this trip was for Liam and for me to see him so excited to meet Mickey Mouse and have the most fun that a 3 and half year could ever have in his life.

This was his very first character encounter, I mean come on, look at his face.  That is pure joy and I know I got a little teary eyed.  I can tell you that this face and smile is burned into my brain for the rest of my life.  Liam and Sadie got to meet a ton more characters through out the week!!

 This little video was at the Disney Junior Live show at Hollywood Studios, Liam loved it as it had Mickey, Doc McStuffins, Jake and Neverland Pirates and Sofia the First.  He had a blast.  

 Meeting Chef Minnie!!!

 Chef Goofy!!!

 Chef Donald!!!

 None other than Chef Mickey!!!!

 Chef Pluto!!!

 Chef Mickey, located at the Contemporary Resort was well worth the money, great food and each of the characters spend a good amount of time at each table with the kids for autographs and pictures. 

 It's a Small World Grandma!!!

Sadie wasn't too sure of all of the little singing statues in It's a Small World


 I might make myself look like an idiot, but I learned something about Chip & Dale at Disney.  The only way to tell the two apart is that Chip has a nose that looks like a chocolate chip, hence his name.  Never knew that, however as you can see this is Dale, we never did find Chip that day!!

 We went to Storytime with Belle and the only way that you could meet Belle and get your picture taken with her is if you volunteered to be in the little play they put on, so me being the mother of the year, made crying Liam be in the play :).  Since he was so scared, I got to be in the play and the picture as well!!!  Thanks for the tip Stef!! :)

 The Haunted Mansion, watch out for those hitchhikers at Disney!!!

 Family Picture at Chef Mickey, not bad for 7am!!

 Goofy at Hollywood Studios!!

 The whole family on Main Street, USA at the Magic Kingdom!!

 This was about as close as we got that whole day, it was like 100 degrees with 90% humidity!!!

Headed into the jungle!!!

We made such amazing memories that whole week and had so much fun, we wish we could go there all of the time but alas, we had to return to the real world.  I do have to say that it was nice for at least a week to act like a normal, non-cancer family.  

In September, there was an amazing event that the Sarcoma Clinic at The James Cancer hospital put on called Steps for Sarcoma.  This event is held annually to benefit the doctors and researchers that work everyday at The James Sarcoma Clinic to find cures for all sarcomas.  I was fortunate for this event, like every day of the last year to be surrounded by everyone who loves me, whether they were near or far.  I am proud to say that my group Maggie's Madhatters raised $3,860 for the event.  We went into the walk 100 people strong and really showed sarcoma that it can suck it!!! :).  To this day, I still get comments from doctors, nurses and even other patients about how impressed they were with our group.  While we didn't get a whole group picture (which I am totally bummed about), here are some pictures from that amazing day!!!

These are only a few of what I assume were a ton of pictures taken that day.  I am still overwhelmed that so many people took the time to support me on that day, from near and far.  It was an amazing day for me to see such love come together not only for me but supporting all the patients that are going through the same battle as I am.  I love each and everyone one of you more than anything in the world and I couldn't ask for a better family or a better group of friends who are all like family to me.  I fully expect to make this a yearly event and I hope that all of you will too!!  

I want to leave each one of you with this, I never thought this year would go quite as well as it has.  I have read horror stories about my particular type of cancer but I know that because I am surrounded by each and everyone of you, with your love and support I can fight this with all the strength I have in my body.  Here is to hoping that this next year goes as well as the last!! :)