Monday, March 3, 2014

Prayers for Owen tomorrow

Well Auntie Abi, Uncle Jordan and Piper flew back to Phoenix today.  It was sad to see them go but we had a really great visit.  Feel so lucky that Abi was able to come home for eleven full days. It was so nice to get so much time with Abi, even though we were both tired and stressed we were able to vent to each other, laugh and cry.  I SO wish they lived closer, actually maybe I wish I lived closer to them and their amazing weather!  We sent poor Piper home with a bad cold that she most likely caught from Owen and Jacob.  :(  Hopefully she was good on their flight home!  Love you Abi, Jordan and Piper and miss you already!

 Sisters plus Piper and Jacob

A few more photos I took over the weekend, man if felt SO good to get back to my photography.

As much as we loved having them it was also nice that after Owen got home from school today it was just me the boys.  Can't even remember the last time we had a good chunk of time just me, Owen and Jacob.  A new super hero book came in the mail today that I had ordered online so Owen was really excited to see that.  Then all of a sudden the book and Jacob were missing, we found Jacob all cuddled up in Owen's bed WITH the book so Owen and I jumped in and we all read it together.  In case you were picturing a sweet vision of the three of us sitting snuggled together reading this book in a picture perfect way, that would be WRONG.  It entailed me fighting with Owen to take him shoes off before getting into bed, the boys fighting over who sat where, me literally PREYING the book out of Jacob's hands and then having to give Jacob about 20 other books to stop him from screaming about the fact that I took the new super hero book.  BUT then we all got situated and read the book and snuggled for a bit.  Then Jacob got off the bed and proceeded to dump out an entire tupperware container of Playmobile stuff, anyone that knows the Playmobil stuff knows there is about 8 million teeny tiny pieces.  But it will still a perfect little afternoon.  The boys actually played well together for a few minutes and I can tell Owen is definitely trying to be extra patient with Jacob.  Here is a photo of them today, popcorn party while watching Frozen.  Jacob looks very concerned that I am coming to steal his popcorn.  :)

I started week FIVE of radiation today!  My final week!  Jamie had to drop me off an hour before my radiation today so he could get to work so I just found a nice place to sit in the Bistro in the sun and caught up on emails.  Strange how the building seems so scary at first but then it becomes so familiar and home like. So crazy to think that I just have this week and next!  It will be SO weird not to be going there everyday.  It's crazy how quickly this whole process became our new normal.  From the original news of the brain tumor on December 15th and the scary thought that I would be going to the Cancer Center, it just all came so naturally.  I can't even remember what life was like before.  I have to say, I was really scared for radiation, scared for how I would handle it, how large of a toll it would take on me and my family but it hasn't been that bad.  I mean I am tired and I think I still shed a few tears 6 nights out of 7 when I look at myself in the mirror before I go to bed (man I wish I looked good with no hair) but I still feel strong, like myself, I am still positive and I know I still GOT THIS!
It will be so nice to be done with radiation next Friday though and then next weekend I can DRIVE too, March 16th to be exact!  I am SO looking forward to being able to drive Owen to school and pick him up everyday, I know he is going to love that!  I can't wait to see that big smile from him every afternoon as he runs out of the classroom to hug me.  I have been so fortunate to have so many great people that have helped give Owen rides home but I am SO excited to be the one waiting outside his classroom door for him every afternoon!  You never realize how much you love that little moment of your day until it's taken away from you.  For those of you with kids in school/daycare really take in that moment tomorrow.  The moment they see you are there to pick them up, the smile they give you, the hug, how they hold your hand as you walk out, isn't it the best?  I long to have that again every day.  
Tomorrow is actually a really big day for us and would appreciate calming vibes for Owen.  Tomorrow he has his MRI at 10am.  This should be the last step in his workup to see if he is a candiate for brain surgery to get rid of his epilepsy.  From our 6 day hospital stay in January where they induced the seizure they were able to locate the area of his brain that the seizures are starting in.  The goal would be to remove that part of his brain so he no longer needs his daily seizure medicine and stays seizure free.  So tomorrow the goal is to have him AWAKE for the MRI.  The doctors will ask him to speak and move around so they can see if the part of the brain they want to remove is doing anything while he is talking and moving.  They are hopeful that this part of his brain is probably not responsible for much as it's on the left side of his brain that was damaged during his stroke in the NICU and a lot of stuff has been rerouted over to the right side of his brain.  We are REALLY nervous for the MRI.  That last hospital stay really traumatized Owen and just last weekend when we had to go in for a blood draw he freaked out when we were about a mile and a half from the hospital as he realized where we were going.  :(  So our plan for tomorrow is to take a totally different route, I actually have radiation at 9am so Jamie, Owen and I will park at the Froedtert instead of Children's Hospital and go to my treatment, Jamie and Owen will just stay in the waiting room.  His neurolgist did prescribe us something to give Owen about 30 minutes before his MRI to help him relax so fingers crossed that works.  THEN after my radiation we will take the underground hallway that connects Froedtert to Children's.  This hallways leads right to the MRI department.  We are hoping that between taking a different route on the drive there, entering the hospital from Froedtert AND the meds we can give him that it will go okay. If he doesn't cooperate they have to sedate him and I can tell you right now he will be SO upset about that.  So please pray that is brave and is able to stay awake inside that huge loud MRI machine and follow instructions.  My heart is already breaking for him, that machine is big and loud and scary.  Hoping that we can keep him calm and keep ourselves together to get him through it.  Jamie and I should be able to stay in the room with him so hopefully that will help and he can watch a movie while inside the machine.  Fingers crossed and prayers said that it goes well!
After they get the results from the MRI we will hear back as to their recommendation, whether it be continue with his medicine or go ahead with the surgery.  We will also talk to my doctor Wednesday to learn more about whether I will be starting chemo or not.  So basically the next few weeks will tell us if we will be just wrapping up radiation, continuing on Owen's meds and resuming a normal life OR heading into probably the most challenging few months we have ever faced with chemo for me and brain surgery for Owen.  It's a lot to process, a lot to even think about.  I am so hopeful that Owen will be a good candidate for surgery.  I have heard so many success stories of kids that have had it and come out functioning even better than before the surgery as they are out of the medicine fog they have been in for years but talking about removing part of your child's brain is just something that is hard to stomach and then add on the fact that I may be doing chemo at the same time, yikes! His last 6 day hospital stay really pushed us beyond anything we have ever been through and this will be probably a two week hospital stay and even more challenging BUT if this would given Owen the best life, the best future well then it's something we have to do for him.  If we can eliminate his seizures, his medicine, the terrible times he has to go through adjusting to new meds or new dosages then that is what we will do because Owen deserves the best.
I often wonder how it is that we have so much on our plate right now, like real serious stuff that we have to deal with.  I honestly still feel like I am 18 years old.  I mean, I know I just turned 33 but I still feel like a kid, like I am definitely NOT old enough to be dealing with all this serious stuff but there really isn't much you can do other than take it all on and fight as hard as you can and you might as while smile while you are at it.  We have had some really hard times with Owen, we have been through a LOT with that child but I wouldn't change it.  He is the most amazing kid ever and has taught me so much, he is a fighter and has overcome so much already and I know he will continue to do so through out his whole life.  I will always be his #1 supporter and he is a perfect role model for me as I fight my battle.  Sure he's young and so he doesn't understand everything but he takes on every obstacle that comes his way and he tackles it and he is ALWAYS smiling and always positive and that is the same attitude I have taken on while fighting this brain tumor.  I have NO doubt that my positive attitude and refusal to think negative thoughts is what has helped me sail through radiation so far and will help me continue my fight.  I have my down times, just like Owen has bad days but we both wake up the next morning smiling and ready for another day.  Jamie, Owen, Jacob and I will be each other biggest supporters , cheering each other one while we tackle obstacles, picking each other up when we are crumbled and crying, we are strong family with one HUGE support system of extended family, friends and strangers!  We will find our way through this and come out with an even deeper love and appreciation for each other, I just know it!  
Me and my Owen!  <3
 Hope everyone has a great night!  Say a prayer for Owen tomorrow that his MRI goes well and that he is calm and relaxed and not scared.  And if it doesn't go well, maybe be at our house with some strong cocktails for Jamie and I when we get back, we should be home around noon.  :) 

Thanks for all the love and support! 

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