Friday, December 27, 2013

Had my doctor appointment this morning and have GOOD news to report... GOOD NEWS!!!!

We were hoping the tumor would have been a grade I benign but we got the second best results, a grade II tumor.  It's not benign but not cancerous either.  It has the chance to turn cancerous so it will be closely monitored my entire life.  
My neurosurgeon does not want to operate on the tumor at this point.  First and foremost, the tumor is too large and he would not be able to remove it all and he thinks the risks at this point of the surgery outweigh the benefits.  So our plan of attack is to go after it with radiation and medication.  I am ready to kick this things ass for sure!  

We can't start radiation until my head is completely healed as the radiation slows healing so I will most likely start radiation in late January or early February.  Radiation will probably be 6 full weeks, I will go in 5 days a week for a 5 minute radiation treatment that zaps the tumor in hopes of keeping it from growing any larger.  Most likely I will be pretty tired and worn out during the process but I could care less about that.  All that I heard him say was you get to go home and SPEND EVERY DAY ALL DAY BEING THE BEST MOM EVER TO OWEN AND JACOB FOR YEARS AND YEARS AND YEARS!!!!!  

I know we still have a long road in front of us and this tumor could turn into something ugly at any point in my life but for now, I am focusing on the good!  I will take the side effects of the radiation with a smile.  Here are a few other logisitcs we will be figuring out.

1. I still can't lift, push or pull anything over 15lbs for another 4 weeks ( in case you were wondering Jacob is 26 lbs)
2. No driving at all until late March
3. Still have meds to take daily but can wean myself from two to one steriods at night which will hopefully help me sleep.
4. No drinking any alcohol for at least 6 weeks, WHO cares!
5.  No blow drying my hair for 4 weeks, be ready for some crazy ass hair!
6. No product of any sort in my hair other than baby shampoo for 6 weeks.
7. Need to figure out my ride to the hospital five days a week for 6 weeks while I can't drive myself.

I feel like I can take on the world.  It's still INSANE to me that I have this huge tumor in my head but it's not taking me down, that is FOR SURE!  I feel like I am living a Lifetime Movie but one with a happy ending. 

We are hoping that my strength and balance is back up to par by mid January as Owen is scheduled to be admitted to Children's on Tuesday, January 14th for testing to see if he will be a good candidate for brain surgery to get rid of his epilepsy.  This was scheduled a month or so ago and Jamie and I are still struggling with whether or not we should do it  now or wait.  If we are going to go ahead we want to do it before i start radiation so I have the strength to be with him non stop during that week stay.  They will basically wean him off his seizure meds while he is constantly hooked up to the EEG in hopes of causing a seizure and documenting exactly what part of his brain is causing them.  If it's all coming from the damaged area from his stroke in the NICU he would be a good candidate to go in for surgery to have that entire section of his brain removed.  SCARY to say the least but after being on seizure meds for the past two weeks and seeing how terrible they make me feel it sure would be nice to allow Owen to live a life OFF the meds!  I feel so terrible that he has been on all these nasty meds for so long.  And to have the chance at eliminating his seizures all together would be amazing.  They are such a strain on his sweet little body.  
It is really surreal that we have been dealt with so much at once but honestly I feel stronger and more positive than ever!  I am going to be the absolute best mom to my children!  I love them so much, they are my world.  I want nothing more than to watch them grow old and give them a life full of the most amazing memories.  
Sorry if this was all over the place.  I can't even put into words how i feel right now.  Well I am off to the shower!!!!  Hope the drain is ready for this grease to rinse off my hair! :)
 This little pumpkin pie woke up with a 102 fever this morning.  Got a few extra snuggles in because of it. 


  1. ALISON! Amen! Our group prayers worked again! Still thinking and praying for your family and you. Sending love and hugs!

  2. Thinking of you daily, Alison! I'm glad to hear this news. Please keep us posted on your progress as well as Owen's!

  3. Hi my name is Maggie, I am 22 and was diagnosed with a grade II astrocytoma last spring. I did the 6 weeks of radiation, with oral chemo too, in March and April. I am also doing 12 rounds of oral chemo now, I have 5 left. I am from Milwaukee and go to Froedtert for treatment too. I am a student at UW-Madison, I withdrew last spring but am back now. I know you are crazy busy but I just happened across this blog today, which happens to be the year "anniversary" of my journey, and just had to leave a comment. Feel free to contact me if you ever want to. You and your family are in my thoughts and prayers. You got this!

  4. Please contact brother has a grade 2 astrocytoma..brain surgeon in madison Dr. Baskaya has made medical miracles...4th brain surgery and xoi g pretty xarn good..wNt to help u

  5. My sister was diagnosed with a grade 4 glioblastoma multiform brain cancer last august, 2013… since then we have rallied around her and started a foundation to fund research and find a CURE! i have just started reading your blog and am so inspired by your stories… my sister is a fighter and raising a 3 years old son as well, here is a link to our Facebook foundation page….

    1. Please see my reply below this comment

  6. Jenny Wolbank-you need to email a man at duke university named Matthias Gromier. I am a cancer researcher at Duke and I watched him give a talk about his research on glioblastoma multiforme. Typically this disease responds to treatment initially. He said it always always always returns and is universally fatal. The good news is his lab has engineered a therapy that has virtually cured two people. This is not for sure yet, but they are 22 plus months out with no apparent signs of tumor. This is the likely the only way your sister will survive so please please Google him and email or call him. He's a bit of a dick, but he's passionate. He might be better with patients than with fellow scientists. But who cares if he's a dick but gets you a cure?


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