Thursday, August 7, 2014


We got good news!!!!

Had my MRI this morning.  For some reason I was really nervous about this MRI.  My past ones I always went into with confidence but this one was different.  I had been dreading it all week and just had a bad feeling about it.  I don't know if it is because we leave for vacation next week and I was scared of getting bad results before leaving or the fact that things had been going so well lately that I felt like we were due for something bad but I just had a bad feeling.  

 For those that aren't all caught up on my story, in December I woke up in the middle of the night with a numb foot, within a few minutes I suffered a grand mal seizure and was taken by ambulance to the hospital where I was diagnosed with a very large brain tumor.  My sister Kim and Jamie (my husband) immediatly had me transported to froedtert where I underwent brain surgery the very next day so they could get a good sample of my tumor for a biopsy.  My tumor was first labeled a grade 2 and was later labeled a grade 3, there is still some questions about which grade it truly is but treatment for either is the same so I decided I did not want to know the definite answer.  Since then I have undergone 6 weeks of radiation and 4 months of chemo.  I am currently getting MRIs every 2 months to monitor the tumor.  This morning was another MRI day.

I had to go to the Cancer Center for bloodwork and my MRI first thing this morning.  Jamie stayed home and got the boys dropped off at summer camp and then met me before we met with my neuro oncologist for my results.  She walked into the room and immediately said "scans look GREAT!".  I can't even put into words the relief and happiness I felt.  Most of the time I can almost forget I have a brain tumor.  Other than the fact that I take chemo five days a week and have to take seizure meds twice a day, I am just a normal stay at home mom.  My days consist of taking care of my boys and they keep me BUSY.  BUT the days leading up to scans are filled with anxiety, fear, tears and stress.  I am not even sure I can explain it.  I have made the choice and made it clear to all my doctors that I do NOT want to know the expected life span of someone with my diagnosis.  I HATE thinking about dying, leaving my boys, not being the one to hug them good morning and kiss them good night every day.  I hardly EVER think this way, I don't allow my mind to go there but the days leading up to tests are different.  It's virtually impossible NOT to think about it.  No matter how hard I try, watching Owen brush his teeth, something so simple is enough to make me sob wondering how many more time I will be able to watch him do it.  It sounds crazy but it's like this about every little thing you see your kids do makes you wonder how long you will be there for them.  Will this week be the week you get the news that your tumor has become aggressive and it's all downhill?  Will I be getting really sick, become scary to my kids? I could go on and on but now I am crying again so I will stop!

Then you get the news that the scan looks good.... it's like a million pounds being lifted off your feel like you can take on the can do want to run and grab your kids and hug them for a really long time.  It's just a high that I have never felt.  We were told going into radiation and chemo the goal was to keep the tumor stable. We were told that we should not expect it to shrink, our goal was simply to keep it from growing.  WELL today's scans confirmed what we kind of thought the previous scans were showing... that the tumor is VERY slowly but surely SHRINKING!  You read that right, it is shrinking!  When we look back to January scans and compare to today's scans the tumor is every so slightly, but NOTICEABLY smaller!  This is literally the best thing I could have heard today.  That the tumor is responding to chemo!!!  That I am kicking this things ass... I GOT THIS!  

  I want to thank everyone a million times over for all the love and support we have received since December.  It has helped us through some really dark times.  I am just so beyond happy right not I can't even express it enough.  I can breath for a few months, relax, enjoy my family without having crazy thoughts.  I can now focus on getting Owen ready for kindergarten.  We are currently trying to decide what kind of braces he needs, his current ones are too small and we are thinking we might want to get taller ones.  He goes into the cerebral palsy clinic at Children's next week and hopefully they can help us decide.  I need to get him back in for another round of neuro psych testing and need to circle back up with his neurologist to talk more about testing he underwent earlier this year.  I can also focus on NORMAL mom stuff, getting some cute new school clothes for Owen, stressing over the pinterest lunches I will pin but never make him, getting school supplies.  Even though I will miss Owen as he goes to school five days a week, I am really looking forward to one on one time with Jacob.  It's going to a be a GREAT rest of 2014!

I am so thankful for all the support.  I am SO SO SO thankful for great results we got today.  Some people question why I don't want to know 100% if it's actually cancer or what my life expectancy is but honestly, having a bit of unknown is what keeps me sane, lets me know I am still LIVING!  If I knew exactly when this tumor would take over I know I wouldn't be freaking out over each and every test BUT I also would NOT experience the feeling of relief and happiness I did today.  I don't mind a few days of depressing thoughts to experience a high like I had today, a high that Jamie had today, that so many of my family and friends had today when they heard the scans looked good.  That is truly what life is about... highs, lows, being there for each other in the worst and best of times.  Life for the most part of boring filled with these peaks and valleys.  I feel we maybe have hit a few more of these valleys in the last few years than most but we have learned so much and I am so grateful.  When I got the boys home from summer camp I held Owen in my lap and hugged him. He has no idea what mommy is going through.  I hugged him and just thanked God for everything.  Then Owen looked at me and said "mom... i have something for you" and then he farted on me and ran away.  It was really the perfect reminder, my number #1 job is being a mom to my silly boys.  I can have some days of sadness but then I need to snap out of it and appreciate the two goof balls I get to spend my days with. Days are filled with lots of different emotions but you can't take anything to seriously, live life, have fun, love those around you, help those who need it, allow yourself sad days but really appreciate the good ones and the most important STAY POSITIVE!

I am off to bed!  Thanks again!

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