Saturday, August 22, 2015

Monday is the Day



First of all I wanted to give a HUGE thank you to all the love and support we received throughout last week.  It was a huge sigh of relief this past week when I got the news that my MRI looked good and my tumor was stable.  It was probably an even bigger sigh of relief that Owen was so brave during his MRI this past Thursday.  One of my biggest concerns has been how Jamie and I will be able to stay strong and positive for Owen on Monday morning.  We KNOW what is going on and how serious this all is but we don't want to let Owen know we are nervous.  Seeing him be so brave at his last MRI gave me the boost I needed.  It just reminded me yet again of how amazing Owen is.  How his strength and adorable attitude will get us through this all.  It's not going to be a fun stay but we are praying it will lead to an easier life for Owen in the long run. 


I know we will have lots of people praying for him and thinking about him.  Wanted to get a post up that kind of outlined what this will all look like.  Our ultimate goal is to locate the exact spot Owen's seizures are coming from and to remove that portion of his brain.  That is what we are praying so very hard for. They have a general idea.... but you need to be VERY exact so you take out the smallest amount of brain possible.  We do know it's coming from the area on the left side of his brain that was damaged from his stroke/grade IV brain bleed in the NICU.  Now we need to dig further to pinpoint the spot and figure out if that area of the brain is being used for any of Owen's daily life. 

So here is the plan
We will check into Children's Hospital around 7:30am on Monday morning (i feel literally sick to my stomach this is a day and a half away).  There will be about an hour and a half of getting checked in, talking with everyone and Owen should be heading back to OR around 9am.  They will give him some gas to put him to sleep once he is taken from us and he will be totally asleep for the entire procedure. 

 They will first start a PICC line, which take about an hour.  This is basically a long term IV he will have in for the duration of his stay.  Once that is placed, the neurosurgeon will come in and begin the first surgery.  They will be drilling tiny holes into Owen's head and then inserting tiny wires with electrodes deep into his brain.  The placement has to be exact, he will actually have a metal cage screwed onto his head that will help guide the surgeoun in his placements.  It's a long process.  We were told Owen would head back to OR around 9am and it would be 6-8 hours until he was in ICU.  

Once the electrodes are placed, he will be taken for a quick 2 minute cat scan to make sure everything looks right.  From the cat scan he will be taken to ICU.  When he is stable, Jamie and I can finally see him.  We will spend the night with him in ICU, he will most likely be sleeping most of the time and nurses will obviously be in often to check on him.  His head will be wrapped up just like with a normal EEG and they have said their should not be any severe pain for him.  

At 9am on Tuesday morning the poor guy will be sedated again for an MRI.  This MRI will check to make sure everything looks good and there are no complications, bleeds, fluid, etc.  If everything looks as expected he will be taken up to the 7th floor EMU (epilepsy monitoring unit).  Over the course of the next few days we will wean his medicine and sleep deprive him to induce a seizure.  This could take 2 days, it could take a week.  There is no way to know when the seizure will come.  I have a feeling it may take awhile as he will have had so much sedation between Monday and Tuesday.  The closer we get to him having the seizure, the worse it will get.  Owen will be out of sorts from not having his medicine, he will be tired, you don't feel like yourself.  He will to be able to leave his bed at all, not even to go to the bathroom.  Not sure how that whole process will go over.  Once he has the seizure, there are basically three outcomes that could happen. 

1.  We see the seizures are coming from a part of his brain that we can NOT remove because it would greatly affect his quality of life.  He could lose his ability to speak, understand what people are saying, lose complete use of his right hand.  We REALLY hope this is not the outcome.  If it is, they remove the electrodes and we head home and continue doing what we are doing and try out new meds in hopes of helping him. 

2.  They may see the seizure and decide they still need to collect MORE data and more information.  If that is the case, Owen will go back to the OR where they will remove portions of his skull so they are able to put a mesh grid directly on the surface of his brain.  This will capture additional data as to where the seizures are coming from.  Once the grid is in place, they will wrap his head back up and we will go back to EMU and wait for another seizure.  Once they have all info from that, they will do the mapping (explained below) and if we decide to move forward.... he would go in for the resectioning surgery where they would remove the part or parts of his brain that are causing the seizure.

3.  The third thing, what we really want to happen... is that they capture ALL the information they need from his FIRST surgery with the deep electrodes.  If they are able to get all the info they need from that first seizure they will map his brain the following day.  Mapping is a process where they basically hook Owen's wires from his brain up to a little box and the doctors stimulate different parts of the brain.  One area may cause Owen to move his right hand or his leg.  They will test the areas and mark down what areas are serving what function.  They will already know the area of his brain they want to remove and this will hopefully allow them to see if that part of his brain is being used for any important functions.  The problem is you can't really map speech and language which is what we are most scared of being affected.  They are pretty sure it's near that area.  So many parts of the brain are responsible for speech and language you can't pin point it to one area.  Plus with the brain damage Owen has, his speech may be in a totally different place than it would normally be.  

So most likely we will be deciding whether or not we want to go ahead with the second surgery knowing that his speech and language MAY be affected.  It could be affected a tiny bit and it could be affected A LOT.  We are praying big time that it ends up being somewhere FAR AWAY from speech and language.  

If we decide to move ahead he will then be taken back probably the day after the mapping is done to have that portion of his brain taken out.  

Jamie and I are a huge ball of emotions.  Scared shitless, hopeful, sad Owen has to go through this, happy that this could really work for him, nervous for how Owen will take all this, thankful all the love and support we have.  

I hope this made sense.  I know a lot of people have been asking what exactly the procedure is.  Hopefully this makes sense and wasn't too detailed.  Words could never describe we have for Owen.  He is just SO happy and SO perfect and to think he is this amazing with all he has going on in his head.  

I have a huge fear this surgery is going to change Owen's personality.  Aside from any serious complications, my biggest fear is that he is going to come out of this a different kid.  He's beyond perfect the way he is.  Innocent, determined, kind, compassionate, silly, happy, resilient, confident, motivated, loving.... he's just Owen.  I can deal with set backs and having to really work to get his speech back to baseline but I just want Owen to be Owen.  The kid that only wants Mom to rub his butt each night at bed, the kid that insists on carrying the groceries into the house, the kid that loves to help dad grill, the kid that always has a smile on his face.   I just want to make sure that Owen stays the same.

I know he is NOT going to like this hospital stay.  It's so hard as he gets older and understands more.  The other day he tearfully asked why he has to wear braces on his legs and Jacob doesn't.  He is going to be really unhappy that his head will be shaved, I am guessing we may need to cover the mirrors at our house until it fills in a bit.  He will be stir crazy and antsy after a few days of not being able to leave a hospital bed.  Jamie and I will be running on fumes but we will get through this.  I know we will.





So please pray for Owen's doctors and nurses, please pray for Jamie and I to have the strength to get through this and most importantly pray for Owen.   



I will be updating via Facebook during our stay.  I will try to get a blog up every few days if time allows.  Thank you in advance for all the prayers. 




Tuesday, March 31, 2015

What's Next...

Well a HUGE thanks for all the support I received this last week as I finished my chemo.  I have had lots of big events in my life.  Lots that involved sports and then there is the birth of two children, watching Owen go through and accomplish some pretty big things but finishing up a full 12 months of chemo is pretty near the top of the list for my biggest accomplishments.  Last Monday was probably one of the biggest days of my life; so to everyone that reached out to me via a phone call, text, Facebook, etc THANK YOU! I felt like I was really celebrating with the entire army that has been behind me through this all.

So what's next you ask? 


Well hopefully my tumor stays stable for a long time.  There is really no knowing what will happen.  I will go in for MRIs every 2 months for at least another year or two and then they can get pushed out to every 3-6 months.  As long as everything stays stable.... we just keep monitoring.  The moment we see growth or a change we will have to come up with a new game plan, chemo again or hopefully there will be some new treatment available!  Please continue to send prayers our way that the tumor stays stable for as long as possible, like until I am 100 years old.


I am SO looking forward to getting some energy back. I have been told I should notice an improvement in my energy level within the next 6 months but it could take a full year to get back to 100%.  So in the meantime I have decided to start training for a half marathon.  Why not... I started training about 2 weeks ago.  I have been a runner my whole life and ran all through college.  I thought it would come back to me pretty quickly but it has been ROUGH!  Apparently I must have lost all the muscle in my legs because it feels like I am just running around with cement blocks attached to my feet!  I keep, thinking.. it will come ... it will come... Each day does get a little easier.  I do have to admit, it feels good to be out there, even when I am struggling, it feels nice to push myself and prove to myself that I can do this.  The half marathon in June 13th, fingers crossed I make it! Jamie was making fun of my playlist on my iPhone.  Apparently he doesn't understand why I think Brass Monkey by the Beastie Boys and You Shook Me All Night Long by AC/DC are good for running.  Brings me back to high school cross country days. 



I think our house is finally healthy and getting back to normal too.  KNOCK ON WOOD!  Both Owen and Jacob were sick for almost 2 weeks straight.  Ear infection after ear infection, stomach bug after stomach bug.  Then my last round of chemo was actually pretty hard on me.  Usually it's not that bad but this last round I had two nights in a row where I was very nauseous and couldn't sleep all night.  I was VERY tired the week after too.  Like get the boys off to school and nap from 9:40-1pm tired.  Didn't help that Jamie was CRAZY busy with work last week too.  He was finishing up on a home he was building and the homeowners moved in on Friday.  So instead of being around to help when I was so worn down and the boys were sick, he was leaving the house by 6am and working super late to get the house ready for the homeowners to move in.  Anyone in the building industry knows how crazy that last week is, Jamie was running all sorts of errands, installing odd and ends hardware, finalizing all punchlist items, getting final occupancy.  I had to kind of fight through last week solo.  We all made it and this week is already a lot better.   

Now I just need to kind of figure out my game plan.  It's weird going through something like this.  My whole life revolved around doctor's appointments, MRIs, chemo, radiation, blood draws, etc.  Now it's like you are thrown back into your "old" life but you aren't the same person.  I am finding it hard to get back into the swing of things.  It's hard to explain but I just feel like my mind is all over the place.  I think I have gone out about 3 times in the last 4 days to get stuff to use to decorate our dining room table and I have NOTHING purchased.  I am just having a hard time planning and figuring things out.  This could just be from being tired, having two crazy kids, effects of my tumor or treatment, most likely it's all of these.  It's just kind of weird.  Usually after I put the kids to bed I sit at my computer and edit photos and now I am SO tired I just want to go to bed which is so not like me. 

I am trying to figure out this summer with the boys.  What camps do I want to send them too, do I need a babysitter one day a week for them, what kind of things do I need to be doing with Owen over the summer to help him stay on track with writing, acedemics, gross motor, fine motor.  I have so much guilt that Jacob has kind of been sitting on the sidelines for the past year.  So much energy has been placed on me and Owen that I haven't done ANY of the things I did with Owen when he Jacob's age.  I finally signed Jacob up for swimming lessons so I feel good about that but I need to carve out more one on one time with Jacob as well. 

Then I am trying to figure out how busy I want to be with my photography this summer.  I was crazy busy last summer and I am nervous that my energy level won't be able to do it again this summer.  I absolutely LOVE working with so many families but I think I may have to slow down a bit for at least this summer and limit the number of sessions I do each week.  I want to really focus on my family.  Lately I have been playing around with my camera with Owen and Jacob and trying to just be creative and get outside my normal photography style and it's been really nice.  So I want to allow time to be able to do more of that this summer.  Then of course I would LOVE to have time to help Jamie out with work.  I can't even put into words how hard he works and I would just LOVE to be able to help take a few things off his plate so that he doesn't have to work until 11pm or midnight every single night to stay afloat. 
 
Wow this post is really all over the place... see what I mean.  My mind is EVERYWHERE!  AHHH!!!!  I am looking forward to Easter vacation and especially looking forward to our trip to Disney in May!  I am also really excited that I bought a cute little beaded headband today and I think I might be able to pull it off.  Hair accessories.... how exciting!  I won't look like a 7 year old boy anymore!
 
Well I am off to lay on the couch and watch tv for a bit.  Thanks again for all the love and support.  I will leave you with a few recent photos. 
 
















 
Night! 

Monday, March 23, 2015

DONE!

Today's post is short and sweet.  

I am done with treatment!  

6 weeks straight of radiation, followed by a full 12 months of chemo treatment.... it's in the books!  I just took my last three pills of chemo.  I am done.

If I am being totally honest...
Yes... I did... I fucking did IT! 





I am going to try and get another blog up later this week. For now I am going to go watch some crap tv show and cry a few happy tears. 

Thanks to everyone that has encouraged our family throughout the last 15 months!  Love you all.




Sunday, February 22, 2015

Eleven Months


Can you count the fingers?
 I couldn't do my 11 month selfie alone (I don't have enough fingers) so I had the boys help me out.  Add up the fingers....tonight I finish my ELEVENTH month of chemo.  Only ONE more month to go!!!  How could a year possibly zip by so quickly!

I feel like I have turned a corner, that positive things are headed our way.  The feeling really started last week.  I had a MRI and doctor appointment last week Thursday.  Wednesday night I received a phone call from a relative with some pretty exciting and unexpected news.  My mom's cousin called to let me know that both he and his wife wanted to help us take a vacation this spring.  I was in shock and so extremely grateful.  Within five days of receiving that phone call, the four of us had airfare booked to Orlando and a Disney villa reserved for us.  I still can't believe it.  We will be spending just over a week at Disney World!!!!  The boys have no idea and are literally going to FREAK out!  I can't thank Bruce and Peggy enough for their unbelievable generosity.
 For some reason I feel like this trip will be like a reset button for us.  It's been a trying last 15 months and I can't even believe we will be getting to get away and spend time at Disney as a family.  May can't come soon enough! Thanks AGAIN to Bruce and Peggy!

Thursday the 12th was my MRI and doctor appointment.  My mom came along, she hasn't had the opportunity to see what my doctor's appointments involve so she was happy to be able to tag along.  I was a little worried she would stare at me like I was a sad little puppy or ask too many questions but she was very well behaved.  :)  Thanks Mom for coming along and hopefully we weren't too hard on you.  The best news of the day was that my tumor has DEFINITELY shrunk!  We had thought all along that it was shrinking every so slowly but we compared the MRI from that day to the MRI from the ones from December of 2014 and it's NOTICEABLY smaller.  It's hard to get exact measurements now as there is a bit of brain damage from my radiation treatments so it's hard to see where the tumor ends and where brain damage begins BUT it's smaller!  SMALLER!  We were told to just hope it would stay stable so knowing it has shrunk was pretty much the most amazing news EVER!  

In other great news... my hair continues to grow and a few times a week I am even able to style it so it looks half way decent. I feel like such a dork because I always work so hard to get a good angle on my selfies but it's for good reason.  The hair on the right side of my head that I don't show is SUPER thin and has missing patches from surgery.  Oh well, I will just keep the world on my left side.  :) Still trying to get Jamie to switch sides of the couch with me so he sees my good side but we've had the same seats for 11 years, we've tried sitting in each other spots and it just feels weird.  (or maybe we are weird)


I am really looking forward to finishing up chemo and getting on with life.  I can't wait to get energy back so I can really start giving my all to Owen again.  For those of you that know me, he has been my main focus since he was born.  This past year has been really hard for me because he started kindergarten and I really had to take a small step back from him and focus on getting myself healthy.  I know I was still a great mom but I also know there are a million things that I could be doing with him at home to help him but I just haven't had the energy to do much this school year.  I am so lucky his school is so amazing and he has an INCREDIBLE team working with him each and everyday.  We just had our big meeting with the school to discuss his new IEP and make plans for how we can help him thrive at school.  He also has some big evaluations coming up in March at Froedtert that might shed a little more light on ways to help him.  Owen just amazes us each and every day.  People don't realize how much he has overcome and all the obstacles he faces everyday.  He goes to school everyday and works his butt off and is SO happy to be there and so proud of his accomplishments.  School work is not coming easy to him but he never gives up and never stops smiling.  

And then we have our "spirited" Jacob.  Jacob very possibly could be the main reason I am so exhausted, it may be him and not the chemo!  Jacob and Owen are complete opposites.  Jamie and I just have to laugh sometimes.  I know my mom and dad laugh all the time because Jacob is so ME as a child.  I should have known I had it coming.  He's loud, sassy, stubborn, angry, silly.... he's Jacob and we love him to the moon and back.  I am also looking forward to having more energy for him!  This is a child that NEEDS to run and be crazy and have fun dance parties.  He is going to have a blast this summer being outside all day everyday and I can already picture him running around with his bleach blonde hair, dirty hands, scabbed over knees and that amazing tacky skin they get from the perfect combination of sunblock and sweat.  

Man I got lucky with two great kids!  I had to fight them both tonight to sleep in pjs so I could wash their superhero costumes. 





Well that's it for tonight.  Jacob is still awake in his bed for some reason, it's 9:40.  Need to go address that.  

We hope everyone has a great week.  Wish me luck as I start my training for the half marathon tomorrow.  I haven't run at all in like 4 years!  Thankfully my friend Liz is driving up from IL to run with me tomorrow!  Can't wait to see you Liz, drive safe! 


Tuesday, January 27, 2015

Ten Months of Chemo DONE!



 I have been meaning to post for awhile and have just been too run down and tired.  I have had a bit more energy these last few days so thought I would get my butt on here to write a blog and update everyone.

I finished month 9 of chemo right before Christmas.  Can you even believe I just have three more rounds to go?!

Here are a few photos from Christmas.  We had a great time.  Got to spend lots of time with my family and Jamie's family.  We are so lucky to have such a fun and supportive family.  Owen and Jacob were so cute this year.  I am really loving watching them become "friends".  Jacob is talking a ton now so the two of them have the funniest conversations.  Jamie and I will just sit and listen to them sometimes.  I can't believe how old they both seem already.  :(  What happened to my babies?!


I had my very last blood draw for 2014 on New Year's Eve.  Crazy to think how much time I sent at the Cancer Center in 2014.  After that we spent the night at a friends house and had a great night celebrating and hanging out with all the kids. 
 My hair is finally starting to get a little longer.  I am TERRIBLE at styling it.  I am always walking around with random pieces sticking up.  I feel like a girl version of Alfalfa but it's growing so I can't complain.  I am actually on the verge of having a real hair style and you can't see all the bald spots on the right side of my head, exciting!

(Don't mind the messy counters)

I just finished up month 10 of chemo last week.  TWO months left!  I can't believe that I have 10 months of chemo completed.  


I was really thinking (and hoping) that my last few months of chemo would be easy and that I would kind of finish strong with a big adrenaline rush from the excitement of being done.  That really hasn't been the case.  I am SO tired.  I wake up everyday between 6:30 and 7am and could literally nap EVERY single day by 9am.  Too bad that schedule doesn't work well with two little kids.  On the days that Jacob goes to daycare I will usually nap from 10-1.  I often end up falling asleep in the afternoon too.  TIRED!  I used to just be tired a few days the week after I completed my chemo.  Now I am tired almost all month long.  I usually have 5-7 days where my energy level is up and then I start the next round of chemo.  TWO more months to go!  I know I can do it. 

I thought I would be really excited to be done with chemo but as the end is almost here I am actually kind of sad and confused.  I had similar feelings when I finished radiation.  When I am taking my chemo meds I feel like I am actively FIGHTING the cancer, like I am being proactive.  When I am done with chemo I feel like I will just be waiting around for the tumor to wreak havoc on our lives again.  It will feel strange to do nothing even though I still have this large tumor in my head. I guess you just get used to it and hopefully as time passes you think about it less and less.  Although that is hard to do when I will still be getting MRIs every two months.  

The other thing I am really struggling with right now is how to go back to "normal" life.  I will be done with chemo in March and I am already wondering what my new normal will be like.  I just spent 15 months with my life revolving around doctor's appointments, MRI's, raidation, chemo, blood draws, planning things around the weeks I know I will have energy.  Now all of a sudden, most of that will be gone and I can go back to my normal life but I am not the same person as I was before all this happened.  It's very strange knowing that at some point in the future I will likely be sick again and could go through this whole process again.  I am just in this weird window of trying to live a normal life.  It's hard to explain.  I have always said that I don't want to know the statistics on my tumor but it's making it hard for me to figure out what I want to do as I move forward after chemo.  For those of you thinking, but why would you think about the tumor coming back, what if it doesn't come back?  That isn't really the case.  We have been told from the get go, I will do radiation and chemo to stabilize the tumor and keep it from growing and then we monitor it and pray the tumor stays stable as long as possible.  Could stay that way for 40 years or it could start growing and causing problems in two years.  We have always been told it's not and IF the tumor will grow again, it's WHEN.  I truly believe it will stay stable for a long time but there is always that what if in the back of your mind.  I guess as time passes you just get used to it and maybe don't think about it as much?  That is what I am hoping.  This isn't a cancer that goes into remission, I mean even if you do have a cancer that is in remission you still fear it coming back.  I am moving forward with basically the same size brain tumor as when we started, we just killed off any living growing cancer cells.  

So I have been thinking a lot about just want I want to do with myself this spring and summer.  Obviously I want to spend a ton of time with Owen and Jacob.  Last summer I was so pretty run down so I look forward to being super mom this summer and doing all sorts of fun things with them.  I am also really looking forward to getting back into my photography.   This is a passion of mine and has been a great escape for me.  I have also decided to get back into shape.  I have been an athlete my whole life (well more so before I met Jamie, love you Jamie) and I think I want to take some time to myself to get in shape.  I have decided to sign up for a half marathon in June!  AHH!!!   I announced it on here... now I really have to do it.  I am going to do the Rock'n'Sole half marathon.  I think my sister in law Niki is doing it as well as my dad and my sister Kim and her husband Adam.  Anyone else want to join us?  I am going to start training next month.  Yikes!

Well that's about it.  Sorry this was kind of all over the place. That is kind of how I feel lately.  One day I want to take on the world, the next day I am crabby and need to sleep all day.  Here's to hoping the last two months go smoothly and that my tumor stays stable for years and years and YEARS!!!!!!!

Thanks again for all the support!  One last photo of Jacob who is now potty trained.  His little butt is SO cute in his undies and one more of Jamie and I snuggling Owen.  


Good night!

Monday, December 15, 2014

ONE YEAR!

So today is the one year anniversary of my seizure and brain tumor diagnosis.  
Wow... what a year it has been for our family.

I don't want to get too emotional but the one year marker is kind of a big deal.  To think that one year ago today, our lives were flipped upside down.  Things still haven't really settled down for us.  I feel different every day, some days I feel great, other days I have no energy, no patience and feel like junk.  Jamie is still nervous a lot.  Just yesterday as Owen was in his room trying to fall asleep he ended up knocking over a nutcracker in his room.  I was sorting laundry in our room and Jamie heard a thud and jumped off the couch sprinting down the hall thinking something had happened to me.  It was only Owen's nutcracker but just to give you and idea of how we are still on edge all the time.  

I think the hardest part of the last year for me has been dealing with the fact that I don't have 100% of my energy.  I always feel like I could be doing more with Owen and Jacob, that I could be more supportive to Jamie.  I feel like this past year has been so much about me that Jamie has been on an island all by himself although he tells me that is not the case.  It's just very hard to feel like you aren't able to give your family 100%.  

Every year for Christmas I make Owen a photo book with all the photos from the past year.  He opens it on Christmas Eve and that is what we look through before he goes to bed that night.  I always wait until the last second and end up making the entire book in the few days before the cut off for Christmas delivery.  This year I told Jamie I just wanted to do it after New Year's because I was too tired.  Jamie said that was fine but gently pushed me to just sit down and get them done for Christmas.  He entertained the boys so I could spend almost two full days completing the books.  This year and last year it ended up being TWO books, both 100 pages long!  I am so grateful for Jamie encouraging me to do it.  Looking at all the photos from the last year made me realize that although I wasn't at 100% I was still a good mom and an okay wife.  Looking through the photos, you wouldn't even know everything that I was going through.  It kind of knocked down my negative thoughts of not being a good enough mom or wife and I could see in the photos that everyone was happy and having fun.  Kind of made it seem like we just had a normal year.  

Then I sat down to gather photos to include in this blog and it was a very quick reminder of just how much crap we went through.  It was hard looking back at some of the photos, I reread some of my first blog posts and it almost made me sick. 

Thinking of how scared Jamie and my family must have been as I was taken back for brain surgery.  I have never asked Jamie what that was like for him, I don't even think I would want to hear how scary that was for him. 

Prepped for surgery. 

 To think we went through last Christmas waiting for the results of my biopsy, not knowing if this was stage 4 brain cancer and I had months to live or if it was totally benign.  
 
Not being able to drive for 3 months because of my seizure.  Not being able to lift Jacob for 12 weeks because of my brain surgery.  I reread my blog about how terrified I was to walk into the Cancer Center for the first time. 


Going through 6 weeks of daily radiation


Looking back at how swollen my face was from all the steriods!  I gained over 30lbs!


Don't miss this moon face.  :) 

Oh the hair loss!!! 

Good Lord, what an awful photo! 

Last day of radiation!!!

Ringing the bell after my last session.

Leaving with my creepy mask.

Celebration lunch at The Harbor House after my final radiation in March.

Then I started with my chemo.  Some months were good, some were much harder.  I will be starting my 9th round any day now.  Just waiting to recover from my terrible cold.  It's just crazy to look back on everything that has happened over the last year.  On top of that, I have done my best to stay on top of everything for Owen.  We still went ahead with the week long hospital stay to see if he would be a candidate for brain surgery for HIS seizures.  He started kindergarten this year which meant getting his IEP in place at the new school, getting to know an entire new team of therapists,trying to stay on top of what was working for him at school and what wasn't.  Realizing that kindergarten was going to be much harder for him than we anticipated and working with his team to figure out ways to adapt things for him.  Fighting our insurance to cover his new taller leg braces.  Ugh, the time I spent on the phone with our insurance company this year... yuck! 

But even though there was so much going on..... there was still so many great things about this last year.  I look back through my photos and see so many great times and I am reminded of all the great people in my life.  I would have never made it through this year without all the love and support that I received.

Lindsey R.  
The amazing woman who stalked me down on Facebook so that she could help me have a good wig experience.  I have no doubt in my mind that Lindsey came into my life for a reason and she has been such a great support for me over the last year. 
Not only has Lindsey always been there for me as a shoulder to cry on (through Facebook messenger) but more than anything she has inspired me to be a better person.  I have never met anyone like her.  She lives her life to help others.  She sees someone in need and she ACTS on it.  She is the most passionate person I know, she had an idea of setting up some sort of non-profit to help provide wigs to people in need.  Within a day she had a company name, logo, fundraiser set up and she was off and running.  So many people have great ideas but just don't act on them.  Not Lindsey, every single day she puts her heart into helping others.  I know everyone that knows her would say the same thing.  She's amazing.
 
See how happy I am with my fancy wig!


Owen's Therapists

We were SO beyond blessed to work with the most amazing women for 2 full years while Owen was in 4K.  Emily, Pat and Cathy will forever have a very special place in my heart.  I adored them LONG before my health issues but what they did for us after my diagnosis was above and beyond.  When Owen started school again after my hospital stay and MINE, it was NOT easy.  He was scared to leave me, he still wasn't himself physically or emotionally.  As a mother it breaks your heart to see your child struggle.  Emily, Pat and Cathy did everything they could to help not only Owen but me as well.  Emily showed up early so that she could help Owen ease into school in a room with just the two of them.  They would send me text updates letting me know he was okay.  They offered me endless words of encouragement.  Pat visited Owen while he was in the hospital, they created sticker charts for him for a long  day of procedures to help him not be so scared.  Emily actually went with him for a long scary procedure where they put half of Owen's brain to sleep to see if he was able to speak using only the right side of his brain.  To see Emily walk back into the room with him, she was dressed in head to toe surgical clothing and with a team of about 15 doctors.  To know that Owen had a familiar face in the room with him is something we could never thank Emily enough for.  

I had the honor of photographing Emily's wedding this past summer.  I was having the best time, getting to know Pat and Cathy's husbands, meeting Emily's AMAZING family... it was a great day.  Then during the reception it came time for the Jake (the groom to dance with his mom) I was on the dance floor snapping photos of them when all of a sudden I became overcome with emotion.  I was suddenly wondering if I would ever have the chance to dance with Owen and Jacob at their weddings.  I was literally sobbing behind my camera praying no one noticed.  When the dance was over I walked over behind the DJ and pretended to be digging through my camera bag but really I was just wiping my tears and trying to compose myself.  I finally pulled myself together and got back out on the dance floor to keep taking photos.  Well not even 5 minutes later the DJ played Timber, Emily ran up to me, grabbed my camera out of my hands, set it on the table and pulled me onto the dance floor and me, Emily, Pat and Cathy all danced and sang the song at the top of our lungs.  That 3 minutes of dancing and singing was one of the highlights of my year.  Being able to sing and dance with the women that had been there for me when I needed it most.



My Family
A huge thanks to my family and Jamie's family.  I know this has been a long year for them too.  I know they wish I would call and actually talk more.  I have tended to shut people out over the last year and both families have been very patient and understanding.  They would patiently wait for blog updates to see what I was feeling or thinking.  They were always a phone call away if we wanted to talk or if we needed help with anything at all.  They helped keep the year as easy for us as possible.  I know a lot them wish they could do more but their love and support has meant the world to us over the past year.  






Friends and Family
A huge thank you to all of you that have sent cards, texts, emails etc with words of encouragement.  I can't tell you how much it has meant to have such an army making this journey with me.  I have never felt alone.  It seemed like anytime I would have a bad day I would get a text or an email at just the right moment.  Just last week I was starting to get kind of depressed about my photography.  I wasn't able to fit in all the people who had contacted me for photos this fall.  Some of the families I have worked with for numerous years and I just didn't have the energy and had to say no.  I was so sad, I LOVE what I do.  I LOVE photographing families and giving them photos they will cherish for years.  I was really contemplating if I should continue with it next year.  As much as I love it, do I have the energy to continue it?  Then the next day I received this email from a client that I photographed a full year ago. 
Hi Alison,

I've wanted to send this message so many times over the last year and am finally getting to it just as you approach the one-year mark of an event that changed your life forever.

Just weeks before, our family had the great opportunity of meeting you and working with you as you captured the best pictures of us. We were thrilled to touch base with you (through a mutual friend - Heather T.) and grab one of your "mini sessions" - what a steal!! It was so cold (the day after Thanksgiving 2013), but you were so cute, so funny, and our kids responded to you so wonderfully. One year later, my daughter still remembers you saying, "Oh Yeah" over and over. Both kids thought you sounded just like Vector from Despicable Me. And they're right . . . you did!! So funny.

We became FB friends so that you could share our photos and I've been so thankful for that. Alison, I talk about you more than I talk about my actual friends. As I watched your story unfold on FB, I told all my coworkers. I told the band that I sing in at church. I told our prayer chain at church. I told all of my family. Anyone that commented on our beautiful Christmas card last year (and people still talk about it!) - I told them your story too.

Now I could have stopped watching your story online, but I didn't - I couldn't. I see the photos of my family in my home and at the office every single day! I always love looking at them. And a split second after I admire my family, I think of you, Alison. How awesome is that!?! I think of you every single day - for a whole year - every single day. I don't think of my sister (who is my best friend and amazing) that often!

Every day I get to remember you and the gift you left with our family. In 20 minutes, outside in the freezing cold, you captured the very best thing in my life - my husband and my kids - my family!! You've done this for so many families and I have to imagine, the same thing happens to each of them. They admire their family for just a moment and then imagine, for a second, the woman behind the lens that froze time for them.

I have been praying for you and your family for all of this past year (almost year). I've loved watching your children grow over FB and hearing about their accomplishments. I've felt privileged to read your story. I love the way you lift up your husband Jamie, yet maintain privacy for him. And I am not the only silent prayer warrior you have out there, I know that!! Because of what you do, many people see their photos and then see you!

Anyway, that's it. That's what I've wanted to say for so long. I won't stop seeing you everyday as I glance at my family settled by that beautiful red train car. And I think that's pretty cool!!

All my love and continued prayers as you prepare your heart and home for Christmas.
S.T.


It was like a sign that I needed to get out of my funk. 

This is the kind of encouragement I have received over the last year from family, friends, strangers... I mean how fortunate can I be?


And my biggest thank you goes to.... JAMIE

Oh what in the world would I do without Jamie?  He has been my rock each and every day.  From the moment he caught me on December, 15th 2013 as I was falling to the floor with a grand mal seizure to last night when I was crying about my hair.... he has been there for me.  This man works non-stop to keep up with work, cooks 90% of our meals, does 90% of the grocery shopping, will drop off and pick up the boys at school if I am sick or need to rest.  When I am exhausted he will give the boys baths and put them to bed.  He worries about me non-stop.  Yells at me if I don't answer my phone because he gets so nervous when I am home alone. He lets me cry when I need to, he knows when I need space and when I need a hug.  He does it all and never complains, never says he's tired or that HE needs a break.  Over the last year, I have had girls nights, massages, pedicures, days of rest.  Jamie very rarely gets a break and you would never know.  He is such an amazing man and I am so proud that Owen and Jacob get to see the example he is setting for them each and every day.  I have no doubt that they will both grow up to be compassionate and selfless men.  They will be helpful husbands who know how to cook, do laundry, love their wife and would do anything for them because that is exactly what Jamie is teaching them.  

Last night Jamie and I were sitting on the couch and trying to remember the night of my seizure and my hospital stay.  I have very little memory of any of it.  Jamie filled me in on some of the details.  He told me how when he laid me on the wood floor in our bedroom while I was seizing so he could grab his phone and call 911 he thought I was dying.  He had to leave me in our room to quickly open the door and turn on the outside light for the paramedics.  He glanced at me before he left the room and didn't think I was breathing.  When the paramedics arrived I started to come to but I couldn't talk and was looking at Jamie like I had no idea who he was.  Jamie was terrified that I had a stroke and major brain damage.  As they took me away in the ambulance he had no idea if I was going to speak, if I would know who he was.... SO terrible.  Then we talked about the hospital stay and my surgery and how crazy it all was.  How we had to spend Christmas last year trying to stay positive as we waited for the biopsy results.  Then we were just kind of quiet for a few minutes and I started laughing.  Jamie asked why I was laughing and I said "wow, what a year... and let's not forget that I was robbed at gunpoint in May".  That is NOT a laughing matter at all but REALLY.... what in the hell?!  With all the shit that we had going on in 2014.... did I really need that too?  I mean, if I was writing a book people would think I was making that up!   


And my final thank you goes to everyone at the Cancer Center.  From Maggie in Small Stones who is so sweet, to Dr. Connelly who is kicking butt with her chemo regime, the entire radiation team including Dr. Siker, everyone who draws my blood each week, all the people that have done my MRIs.  Literally every single person I have dealt with over there has been positive and amazing.  I never wanted to step foot in that Cancer Center but I can tell you that it's actually a really nice place to be.   

So I have officially known about a twinkie sized tumor in my head for 365 days.  2014 wasn't the best year of my life so I am ready to (as the boys say) "give it the boot".  





Bring on 2015.  
Bring on my last four rounds of chemo.  
Bring on more stable MRIs.
Bring back my energy.
Bring on fast hair growth.
Bring on a busy year of photography.
Bring on a year of fun with the three amazing guys in my life. 

If you made it through this FOREVER long post, thanks!

Thanks again for all the love and support!  

MERRY CHRISTMAS!