Wednesday, March 9, 2011

Beware of the monster blood cells

Well it's been awhile dear ol' blog, and I'm afraid I've been a neglectful blogger, but I will make it up to you starting now.

The last weekend has been a whirlwind to say the least.  Almost like getting married, and preparing for a wedding.  You spend so much time preparing, and combing over details, then the big day comes and it goes by so quickly that you're left standing there with tears in your eyes and a box full of cash in your hands.  Well maybe not everyone has that happen to them in that way, but that was my experience. 

Brinley's fund raiser was a HUGE success, and by HUGE I mean it totally blew my mind.  I cannot say enough how wonderful it is that so many people have rallied around us to raise money for our little family.  When it comes to my 8 hard working extraordinary friends, I don't have enough good things to say about them, they literally render me speechless.  I really hope they all understand how thankful I truly am to everything they have done, the time they have taken away from their own families and lives, and all of the effort them have put forth.  If only everyone had friends like mine...

I must say, part of me feels a bit bad.  Sometimes I feel that I try so hard to control my emotions that I come off like a cold stone wall.  I put so much effort into keeping my tears on lock down that I come across unemotional, or even ungrateful?  Here's my theory, and this is just the way I see it: I have control over so very little in my life right now, that I have to dig deep and control my feelings because I'm so afraid that if I don't I will fall the hell apart.  Yes I have my moments, where I sit down and cry my eyes out, but it's when I'm alone, whether it be in the car, or alone in our room.  I will sit down, face in hands and cry until I can't anymore.  I cry about the love and strength people have given me over the course of  months.  I cry about my son telling me that he misses the "old Brinley", and how he just wishes she would play with him again.  I cry about my daughters pain, and her attempt to over come the chemotherapy aftermath. I cry because I am terrified everyday.  So it's hugely important that I don't come across as a bitch when I don't cry in public because believe me, there are a lot of tears behind closed doors.

Speaking of my son, I had a very in depth conversation with him tonight, it all started off about how he misses Brinley. He says he misses his sister, and that he wants her to get better.  He said, "when Brinley is all better, it will be my turn to be sick" I told him I hope that never happens, and he says, "oh I don't want cancer, just a cold or something". We also discussed cancer, Carter wanted to know what it was, when I told him it was a disease, he wanted to know what that was! So we have a very long descriptive conversation about diseases, and how the body works together as a team, and sometimes a part of the team doesn't want to work properly, and it's a disease.  We talked about how Brinley's blood was sick, and how some of her blood cells are red and white, and the cancer cells are not good cells.  He said the cancer cells are green with teeth...right, ok green with teeth..."sharp teeth!" he says.  So Brin has green cells that are really monsters with sharp teeth and they hurt the red cells, which makes her body not play on the same team very well, and the chemo is the teacher and comes into her body and stomps on the green monster cells.  GOT IT.

OH and then we got into discussing air did I ever get so lucky to have that conversation?

We also chatted about aviation, and how "dad's daddy" knew all about air planes, and how Carter would like to know about air planes too. We talked about how grandpa Cary passed away "it wasn't cancer right?" and why "dad's mom" doesn't want to be in our family.  Here is where it gets very tricky.  I have a 5 year old boy who is insanely smart for his age, and he's getting family dynamic, and now I have to explain the crap shoot that it is.  I will not lie to him about it, I haven't lied about it yet, and I won't start now to spare anyone reputation.  But it's hard to explain such a thing to a 5 year old without them turning it into their fault, or having their feelings hurt. 

In other news, Brinley starts delayed intensification on the 24th of this month.  First she will have an echo cardiogram done on the 22nd, to they can get an image of what her heart looks like, then on the 24th she will start a new drug, doxorubicin, which effects the heart and causes several different problems with it.  She will also have another surgery on the 24th, and a RBC transfusion and will be given platelets too.  YIKES.  On the 28th she will have her PEG shots into her thighs, and then on the 30th she will have chemo again. It also appears that mid April she'll be hospitalized for 10 days to have her cytarabine everyday...and then...MAINTENANCE! least I hope!  We will also be meeting with Brinley's wish coordinator on the 26th so they can start on her wish.  It is the ONE thing she is excited about!

Brinley's beaded journey to date. Bome of the people that went
to the fund raiser brought her a bead. The big green bead
marks off the start of all the donated beads.
Well thats all for now, it's late and I need to get some sleep. Until next time.


  1. Wow, Brinley sure has alot coming up this month. She is one tough little girl from what i can see, and I think about her everyday hoping her pain and suffering shall not be too much to bear. I cant imagine how hard it is for her and you guys.
    What a great mom you are and I love how you explained all the cancer cells and such as a team. Great way to put it. You did good. I will continue to think about your family and I send positive energy your way.

  2. You are truly blessed with the ourpouring of love and support, that your friends surrounded your family with last weekend at the Brincess Ball~ I was very pleased to meet the AMAZING women that planned and ran the fun and successful fund raiser!I know it will help your family through this difficult time. I will also be eternaly gtateful to all the people who offered words of encouragement and prayers for Brin! I am so glad we came!!
    Morgan, don't ever be afraid to cry. Showing emotions show that you are emotionaly connected. We don't always have control of our emotions and that's a good thing! I know I too, can be brought to tears easily and can be found at any given moment crying and praying for this all to go away!! My heart aches for the pain you are all going through!
    Carter seems to be taking Brin's mood swings in stride and how she feels day to day. He knows things are different and wants to make things easier for all of you.. He is a very smart abd sensitive little guy and he is your little protector and always has been! Carter must find it very difficult to adjust because not only are Brinley's fun filled days gone, so are his.
    I know with your unique explainations, encouragement, and sense of humour you will all finish this journey intact!!
    Brin has some pretty intense and invasive treatment coming up soon. I will come as soon as I can. Love and prayers to you all!

  3. Your ears must have been burning last night, sitting at Auntie Marie's and talking about you all. Morgan somewhere the strength has come, I think it is a special maternal power women are given, such fierce protectors of our young. You are doing an amazing job with Carter as well, I just love the visualization he has, and how right that feels.

    I do hope you can cry with him as well, don't let him just be the brave boy, how wonderful to have such an understanding one for his young age. Cry Morgan when you must. Anywhere is fine, you need to let the emotions go, then a deep breath and take the next step. Don't hide behind closed doors, we cry with you, believe me.

    Now on to a difficult few weeks, my heart is with you, and many others
    are all egging you on, in fact that is a good word - Easter is coming at
    the end of April....hopefully you will be through the worst and hopefully
    able to look for Easter eggs with Blake and the kids, it doesn't matter where, maybe just use it as a goal. Love you girl, Auntie Pauline