Wednesday, April 9, 2014


This may come as a shock to you, but...I am actually very torn and sad that so many people have found a new chance in life thru finding Dr.Spetler thru this blog...  

It makes me cry, every time...  Simply because I am so heartbroken to meet more and more people that were just sent home to deal with seeing themself, or watching someone they deeply love, become more and more disable, until their brain basically bleeds to death. I want Dr.Spetzler, and any other qualified brainstem neurosurgeons, to be known, right away, easily. It breaks my heart that it is so hard to find them.... yet I am thankful that so many people have found answer thru this page.  I am truly humbled by this. Nobody even knew I had this until all hell  broke loose and I ended up in the hospital, more than a Year after I was diagnosed. I was private, and didn't understand that people do care, and want to pray and support you. I didn't want pity, or come across as wanting attention, so I didn't say anything... I was wrong.   The support I received from so many people the minute I shared my struggles was and still is overwhelming.  Sharing my struggles, educating myself in this illness, and annoying people on forums and support page by insisting that it is NOT "Inoperable" have made people mad, but have helped more.  

This brings me to Drew.

I know what you are thinking... 2 people??  In one day??

YES!!   Not because I think you can, or I can, but because I know that God can!

Drew is a smart, handsome and athletic 15yo boy. His mother contacted me last month thru this blog. She too, had find my blog, that then led her to Dr.Spetzler.  See what I was saying? Why couldn't she just google up "Brainstem surgery" and have Dr.Spetzler pop up, why? Why did she have to dig for my blog?  That is what I am telling you people, I don't have any  merit on this, These people who find me, ARE the Hero!!!

When she first emailed me, Drew's mother shared with me that he has had 2 bleed in 9 months, and even the local hospital have offered to do the surgery.  That to me, was the key information to encourage her to pursue surgery with Dr.Spetzler.  Neurosurgeons just do NOT offer this surgery. Its always "inoperable" until the last resort.  Drew is doing fine right now. He recovered from his bleeds, just as I did the first 2 times, but 2 bleeds in 9 months, we all know that a third bleed is inevitable, and that is why he was offered the surgery locally .      

Are you ready for this? In her email, Drew's mother told me where they lived, without knowing exactly where I live.  They are right here, in Cincinnati, Ohio!!    We were able to meet in person 3 days after exchanging emails. What a blessing. We talked for 2 hours and it went by like 2 min. I am so thankful to be right here to offer support to this family.     Are you ready for more?  Drew's surgery was scheduled for... Friday, April 11th, at 9am!!  Same day as Crystal!!!  

Now, if you guys are confused as to how is it possible for Dr.Spetzler to perform 2, 5 to12hours long surgery, within 3
hours from each other?  This answer will answer another question as of why is Dr.Spetzler the best at removing these brainstem tumors? Because that is the ONLY thing he does!!!   Dr.Spetzler  can have as many as 5 O.R opened at the same time, at an interval spaced out perfectly enough for his teams to do all the work , just enough to let him do the most complicated part. He will spend 1-2 hours doing just that, then leave his team to "close", which allow him to move on the next OR to repeat the hard part again. That is ALL he does!!!  Surgeons here put him down to me, calling him a clown... saying "what is this, a drive-thru brainstem surgery?" and you know what? they can call it how they want, it works, and he saves lives all over the world, while they tell people to go home to die.  So there!!!  I was amazed that Drew and Crystal are the same day.. since they both live at different  part of the country, both found him thru this blog... They will also meet and be able to support each other. Oh I wish I could be right there with them!!!   However, I will be right here for Drew and his family and support them in any way they need.

Drew is a healthy 15yo.  Unlike all of us adults that chose to have this surgery now in order to avoid severe handicap or death later, Drew is just a boy and could not make that decision!  He is a healthy boy that loves to play sports, play video games and hang out with friends.   He is too young to totally go into this completely ready for it, but too old to be totally innocent.   I have NO doubts that this is the best decision, as I would do the same for my own child, but my eyes still fill up with tears and my heart worries at the thought.  I KNOW he will be fine and recover, but I also know how challenging it is, for him, and his family!

I may not of been worried to wake up not being able to move, paralysed, barely being able to see or hear, and feeling like I was floating or majorly drunk all the time (You can laugh that's ok)  but I am an adult, and I knew it was coming.  The fact that Drew recovered SO well from his previous bleed is SO encouraging. I am very confident that he will not have any permanent deficits. I have learned thru this that the better shape you go in, the better shape you come out.  They are even making studies on this.  For years and years, they have been waiting for patients to be on the verge of death, already disabled, to have this surgery done. They are finding more and more that people recover so much better if they are not already disabled!  

Drew is healthy, but he has what is called "Low Factor 7".  Factor 7 is your ability to clot blood.  He is a little low, which means that his blood doesn't clot like it should. This also means that he may need medicine to help clot the blood, but this puts him at a higher risk for blood clots! The Doctors at their local hospital suggested having the medicine handy, just in case he needs it. They flew out to Phoenix this past Monday, and had a second opinion appointment at St.Joseph, in Phoenix, and their opinion contradicts what they were told locally. They want to give him the medicine, and not wait to see if he needs it.  They will ask Dr.Spetzler more about it Tomorrow at Pre-Op.    Contradicting opinions is the worse!!  

For Drew, I am asking to pray for many things.  Or course, pray that his Low Factor 7 will not be of any issues and that the surgery is a complete success at removing ALL the cavernoma and no new permanent deficits!!  Also Pray that he uses that teenager's boy mind they all have to be strong and stubborn into this recovery! Pray that he does not have ANY paralysis, on any part of his body, legs, arms, one sided, face, anything!!!  Pray that whatever it is that his body decides he will have to recover from, it will be done steadily quick, so he can keep his Spirit good, positive and happy. I do not want Drew to experience any long "low" and slow period. I want him to be full of encouragement and progress, so he will have NO doubts that he will be back to normal!   That's what I want to pray now for Drew.  I think sometimes, it is ok to give God some orders.  Right?

Don't even correct me if I'm wrong. :) After all, he does show up at surgeries :)

When told that a lot of people were praying for him during performing a surgery
Dr.Spetzler said : "I know, I could feel it" 


  1. Thank you for sharing ask if these stories. Finding your blog was a blessing that I believe God led me directly to. I know you struggle at times with the new you but from my perspective you are a hero. You should be so proud. God is truly using you add an angel on earth. I will pray everyday for Drew and Crystal and all the others.

    1. Thank you so much for your heartwarming words Jamie. I am so very grateful for people to find hope, and amazing surgeon thru my blog, but at the same time, the more people I meet, the harder my heart hurts. I wish this was not needed! I guess its a double sword!!

  2. Hello I found your blog today whilst floating around on the Norwegian Sea - on a seismic exploration vessel with 52 guys - and I was operated on by Dr Spetzler in 2005 - after having a CVM in the right posterior thalamus. Drew has all my best wishes - he's fit, young and he's got a lot of people supporting him that he doesn't even know about, as do you and everyone you mention in your blogs. Some of us are lucky - I was very lucky! Dr Spetzler fixed me. My deficits are perithesis in my left side and some wonky vision from time to time. Ha - what's that! I have had some testing times particularly the first two years of recovery but I am testament that Dr Spetzler can truly fix people, and Drew and many other people can have a full live again - do whatever it is you want to do. I ride motorbikes, work at sea for 5 weeks at a time, I even learned to paraglide (slightly deranged I know). All the best to you, to Drew and to all who read your blog. Get well soon. x

    1. Thank you so much Gillian :) I LOVE hearing about other people' stories! It would be awesome if you shared more with me and I could feature it on this blog in the "success stories" section!!! Let me know! You can email me at
      Paraglide sounds awesome actually!! I am glad that you got your life back and living it to the fullest!!