Thursday, December 15, 2011

Here is to a fantastic 11 years!

Today is our official anniversary but thanks to Bryson having a great job and the fact that we still need cold hard cash, he is on business at the corporate headquarters in Minnesota. We had a great celebration on Monday at Christopher's Steak House in SLC. It was delicious and luxurious. Most importantly we talked about our wild year, the endless blessings we have received, and truly enjoyed every moment together!

It does not get much better then this! Ahhhh :)

Here is my lil face book post: Today is our 11th anniversary! I am so grateful to be married to my very best friend Bryson Perry! This year has been a true gift and I know now more then ever I could not make it without him. Thanks babe for being my nurse and taking on the load at home. You are the greatest husband and daddy in the world. Here is to forever and ever! Tonight I will snuggle with your hoodie and I'll be dreaming of you :)

Here is Bryson's post: My official 11th anniversary is Thursday the 15th but due to the fact that I am heading out of town later this week, I am celebrating it today. This year was shaping up to be one of the scariest in my life with Taylor having her second heart surgery. Summer was so amazing through it all and was a rock for our family even when I was a whimpering, broken, heap, wincing on the recliner, just adding to the mess. We made it through it all with her being the hot nurse every household needs, taking care of everything! I couldn't have imagined a more amazing, supportive, loving, wife and mother in all the world. It quickly became the scariest year by a long shot when on September 12th she was diagnosed with her brain tumor. I was up all night worrying about her and it continued for months as I imagined what would I do without her. Summer is doing amazing and is recovering quickly and I am so grateful that we were so blessed to have had the outcome we did. Summer, you are an amazing mother to our wonderful children, you are my best friend in the world and you are still as hot as can be. I love you and am so grateful you chose me. I am yours forever!

To me I have always thought that I was grateful for the gifts, but it is amazing at how much of a blessing every single moment is! The moment the drs discovered my brain tumor I knew life would never ever be the same. I knew I had a new out look on life and that I would deeply savor every single moment, gift and blessing. I always knew that I was supposed to find Bryson and that we were MFEO (made for each other!) But I had no idea how much closer we could grow. I know that we have sailed through hard times and that no matter the challenge we will make it through together. thank you for being my rock and best friend. You are my world!

Thursday, November 24, 2011

Gratitude is everything!

This year I wish I could simplify my emotion, but I am so eternally grateful for this year, I can hardly express myself. Looking back my family has been blessed and protected immensely, and I am sure that I will never ever forget this. Starting with Taylor having an extremely successful open heart surgery in June, she was a trooper and taught me so much about strength and positivity. Then exactly 2 weeks later watching Bryson crash in one of the worst bike race crashes I have ever seen (and I have watch many.) Myself, Myles, and Skyler were only 20 feet away and when I got to him I was just thrilled that he could talk, move and generally was going to be ok. A couple of broken ribs, a broken scapula, and a possible break in his pelvis (they were not sure if it was from a previous crash or not.) Bryson has always been amazing but having to take care of him helped me think about how important he is to me and how blessed I am to have him. Then the big shock, my seizure (which I know we were all protected as I was not able to get the car started.) Which led to finding a tumor in my speech center. This was a tough trial which I am still of course dealing with. But I am so grateful for all of it. GRATEFUL that myself and family were protected through the struggles. Grateful that they found the problem. Grateful that I was able to have an amazing medical team who gave me confidence and were able to fully remove my 2 tumors without damaging my speech. Grateful that I has zero worries about an awake tumor removal surgery (if that's not a blessing then I do not know what is) Grateful for the staff at Huntsman who didn't quite know what to do with me. I felt like crap and they just kept saying you are doing amazing. They would try to move me in bed and I would just stand up so they could adjust stuff, they were always shocked. Grateful for Bryson who stood by me side and took care of everything. I always knew I had the perfect man for me, but this trial truly put a deeper love in my heart. I love you Bryson so much and all i can say is THANK YOU! Grateful for friends and family who are there every step of the way. I knew my kids were safe and protected. I knew that if the bus was late a neighbor would pick them up. I am thankful for the greatest friends and family in the world and I know I will never take them for granted. I am grateful for the gift of health and healing. It has been a battle to stay at home and feel stagnant, but I will recover fully and that is a HUGE BLESSING!  Grateful for my strength and faith. This had been a humbling year in the best way possible. I have learned that we are in God's hands and he is here, he knows us, and is aware of us. Lastly I am grateful for everything, and grateful that I have a new view of life. Life is a gift. Happy Thanksgiving!

Thursday, November 10, 2011

My 30 day follow up appointment...

I know I have been a little slow on my updates but frankly I'm thrilled to be back to some of my normal chores and mother duties. I am generally still quite tired and lethargic! I know I was ready to be all better but my energy is so low. That being said everything is going well and better then expected, so for that I am grateful. Bryson and I met with Dr. Jensen On Tuesday for my 30 day follow up appointment. It was funny the nurse didn't know I had just had surgery she thought I was at a year follow up. She kept saying you just look so good I can't believe you just had surgery, apparently most people look like they have been hit by a truck? When Dr. Jensen came in I could tell he was happy kinda excited to see me and my progress. He expressed his sympathy for all the gloom and doom before the surgery and explained that it is his job to let us know all the possibilities. He then said how happy he was with the tumor removal and how smoothly it went. My mapping was perfect, which means the exact speech center was perfectly located (that is not always the case). He rubbed his finger across my incision and said that it looked great, no infection there. We discussed the pathology results more in depth and the particular tumor type is a stage who one. Meaning that this type of benign tumor does not return! So I will have a yearly MRI for a few years, then move to an MRI every two years, and finally every 5 years. Sounds great to me. We also discussed the sharp shooting pains in my head. Dr. Jensen said that they are probably sensors forming back together in my brain. They could last for 3-6 more months and that every ones body has their own way of healing and growing back together. He also told me that my numbness around my head, numb ear, and sore mouth is all normal and part of the recovery. that was reassuring also. It was funny to discuss the surgery with him because he laughed at how much I talked??? He said once he had the speech center located (which turned out to be close but not that dangerous to my tumor) he then asked the anesthesiologist to start talking to me. Some how we got into soccer, I think it started from my kids and his kids play also. And I got all opinionated about club teams versus independent teams, my time as a coach and what I'm choosing to do with my girls. He said it was pretty funny to hear me so with it and so clear. He also said that most people remember very little but he knew I would remember a lot because I was so clear throughout the surgery. Dr. Jensen also said that with most people they need a whole team of people to support them during the surgery because basically they are scared and nervous, but as soon as he met with me and talked to me he knew that I was ready and was going to breeze right through the procedure (that was comforting!) The most amazing part was to see the MRI scan during the tumor removal. There is my head, a small black hole from the tumor removal and the A HUGE SECTION OF MY SKULL AND SKIN TOTALLY REMOVED. Essentially it was like a drawing of a circle (my skull) that had been erased for 25% of it! It was wild and super amazing at the same time. Now I am still sleeping around 10 hours a night and taking naps during the day. I have to be very careful about how much I do and what events I go to. Truthfully I am sick of not feeling 100% but I know it will come and I know how grateful I am and how much I have been blessed. I can also feel words coming back slowly but surely and my spelling is also getting easier. Dr. Jensen said I'm way ahead of the game and not to worry at all. So I'm not worrying I'm loving the fun moments with my family and friends and I guarantee Thanksgiving is taking on a whole new meaning to me this year!

Thursday, November 3, 2011

Through this process I have had the opportunity to meet many other cancer survivors. I again feel so blessed to be in my current situation and hope others can also be as blessed as me. I had an article sent to me and I figure if it helps anyone struggling or looking for support then it is worth it.

The Role Of Support Networks In The Fight Against Cancer

Cancer is a battle. In fact, it is the toughest battle most people will ever face. Cancer is a disease of aggression and isolation. But no one has to face the battle alone.

Support networks are important weapons in the fight against cancer. Numerous local, national, and global networks exist to support cancer patients every step of the way. Some of them are community groups, where members interact face-to-face. Others are online communities, where people communicate through blogs, email, and discussion boards.

Cancer patients, family members, and caregivers need a team of people to support them and help them fight the battle. Cancer support networks do just that, in a number of different ways. They are important resources whether someone has treatable skin cancer, mesothelioma rare mesothelioma or any other form of cancer.

Information And Practical Support

Support networks offer several services for cancer patients and others affected by the disease. People with cancer have a lot of questions, and support groups can provide the answers. Books, brochures, and online resources provide high-quality, current information on cancer types, screening tests, cancer treatments, life after cancer, and end-of-life challenges.

The financial costs of cancer are significant, but money worries are the last thing patients need in their fight against cancer. Many support groups offer financial support, advice, and resources. They may also provide information on government assistance and grant programs to offset medical expenses.

Social And Emotional Support

But the jewel of support networks is the opportunity to talk about cancer with people who understand. Doctors and other health professionals are part of a patient’s support system. So are family and friends, but they are usually struggling with their own emotions.

Other cancer survivors are the best place to go for information, support, and encouragement. It is hard for cancer patients to put words to their fears and feelings, but talking to somewhat outside the family can help -- especially if that someone has gone through a similar situation.

Groups like  The Cancer Support Community, which formed when The Wellness Community and Gilda’s Club joined forces, offer invaluable emotional and social support. Many also provide educational resources, counseling services, and healthy lifestyle programs.

Cancer support networks come in the form of local groups, too. They often meet in hospitals, community centers, schools, churches, and even member homes. Patients can talk to their oncologist, family doctor, or hospital personnel for the names and meeting times of cancer support groups in their area.

By: David Haas

Saturday, October 22, 2011

A day at Cross Out Cancer

Today was by far the best day I have had. Only 15 days in and I am healing everyday. I feel very manageable with the pain and can now tell when I'm over doing it! My pain level rides at about a 2-3. I have swelling and some sharp shooting pain, it's all very ok now! The biggest thing is the exhaustion but everyday I have a little more energy. Last night was the very first night I've slept all night since my seizure!!! Let me just tell you that it is a joy to just over do it a little! Sounds weird I know but I am positive that the hardest part is sitting on my duff and feeling like a bump on a log, while so many other people help me and my family.

Yesterday we got a quick call from Channel 2 News about hearing Bryson's sister Melissa and Matt putting on the fundraiser UTCX Cross Out Cancer. Who knew that this would hit so close to home and be a huge part of my life! None of us did. Luckily I had a shower and a lil makeup on. We were in Park City enjoying the gorgeous fall leaves (aka Bryson tries to get me out of the house everyday, thanks babe!) The news called us and ran up to PC. We did a quick interview with my family then Bryson and myself interviewed separately. We encouraged everyone to get out and supportUTCX CROS OUT CANCER helping Huntsman Cancer Institute and Live Strong. Also our amazing friend Billy did a quick interview to help with Cross Out Cancer and basically be the local hero/Nordic Combined Gold Medalist (he is the best, Skyler LOVED him for reals for ever!) I've got to say that I was of course happy to help the event and to get the word out but man it is not so kind to be swollen and way to close to my face on tv! Who knew that I ever cared about my appearance!

This morning Bryson ran over early to the Event to help then he came back to get me and the kids. We spent the afternoon at Wheeler farm at Cross Out Cancer. It was an AMAZING event! I was so happy to be there, to be outside and feel even 40% normal. All of my kids rode the ride. Myles crushed the strider bike category! The kid just kept going and going. He only needed to do 1 lap, he did at least 5 laps probably 6! He won for sure but who's counting (oh ya me!) He definitely had the eye of the tiger, he has wanted to win for a long time! Taylor and Skyler both raced the 8 and over race. It was a jumble of kids total chaos! Taylor started out ahead but Skyler quickly used her skills and risk and passed Taylor And luckily didn't hit any 2 yr olds. They both rocked and "unofficially" Skyler was in about 5th place and Taylor was in 6th place. They love to race and I love to watch them fly! SO MUCH FUN! Then Bryson got to race. Just this made me so happy! Bryson has been so amazing through this experience and I'm so happy that we are moving back to normal life. I knew how great Bryson was a long long time ago, but we have grown so much closer through this trial and he truly is the man of my dreams! Bryson raced great had a lil bike seat problem. He ended up in 6th place which considering everything we and he have been through we will take it. So here is to lots and lots of more cross races for Bryson!

The event did thrash me of course. But it was so nice to be outside, chat with great friends, WATCH MY KIDS and love life! I am so blessed in so many ways. I can only imagine how great I will feel in another 7 days!

Again thank you for all the love and help (broken record broken record.) But I just have to thank everyone for the love and help. Every message helps and touches my heart! Every note and gift give me a little burst of sunshine! I truly feel like one of the luckiest girls in the world! Oh life it is a wild ride but man is it good!

Tuesday, October 18, 2011

It's all good...

This morning Bryson woke me up at 9 am usually he knows that won't roll since I'm only sleeping 1-2 hours a night but this morning was very special. He was on the phone with Dr. Jensen and he had the final official pathology report of the tumor. It is 100% benign!!!! CAN"T YOU JUST HEAR ME SCREAMING FOR JOY!!! Bryson and I gave one another a big relief kiss during the call. The exact pathology is a very detailed long word that I don't have right now, he is emailing me. But the tumor is benign and completely removed. I will not need any further treatment. Seriously this is a huge relief and such a great gift, I am truly blessed!!!

I am going to wing off my seizure medication and steroids, In the next 5 days I should be medication FREE! Which hopefully gets rid of the metallic taste in my mouth and the nausea. Then once I am able to feel better I will have the ability to DRIVE! YES DRIVE! It may be another week or two but that is amazing!!! The light is there and man it is mighty BRIGHT! I follow up at the beginning of November just to see Dr. Jensen, check the incision and further update my health. Then I will have a yearly MRI to search for tumors. I am so relieved to be here in this place. And so blessed to be safe and to once again be nearing the road to health. The interesting thing will be if my migraines help or not? It's funny because it could be just one more miracle? I'll just have to wait and see! I still feel swelling, tingling, and pain but it is not unmanageable. The pain is more sporadic?

Everyday I do feel improvement and I can only imagine how great I could feel if I slept even 4-6 hours. I'm quite tired and mostly going crazy since I do nothing but I am excited to move forward and get every lil step closer to health. I am happy to report I now have the energy to bath my kids and sometimes help with homework. Seriously even laundry is going to at least make me contribute, so that's cool too (never thought I would say that!)

Monday, October 17, 2011

Just hollering a good old hello...

Everyday is slowly but surly getting better. I know why dr's do not tell you how long, hard and painful the long process is. Because I would have never ever signed up for it. That being said my pain is manageable and I am only on tylenol and ib profen, plus the original meds: keppra (seizure meds) and dexamethasone (steriod). I decided today to get off everything else, so all the yucky stomach and bowel meds are gone (sorry if it's tmi but that's my new life! ha ha!) I still have quite a bit of nausea and that is mainly what keeps me awake at night and during the day. But I am grateful to see daily improvement. It's been 9 days! Who knew 9 days could last so LONG! Not I! I feel like I should be up and jumping and that is so far from the truth. Seriously I could have given birth at least 3 times easier! I am sure part of it was the initial seizure really took all my independence away and then I had to wait for the surgery. So it was a long 3 weeks even before the surgery. I feel like I am getting STUPIDER by the second, I can't wait until the day when I no longer watch TV and even just reading a book which would be so amazing but it is way to strenuous on my brain.

We went to Huntsman Neuroscience and had my staples removed this morning. Not only did I wear jeans (heck yes!) but I felt a little normal for a little bit. Luckily Bryson took video!/summerhallperry so if you want to see it's on face book. It was not to bad just a couple of pokes. Bring it on! They continue to say that the incision looks great! Which I am grateful for! And the swelling is continuing to go down!

This has been a very challenging gift! I have had to rely on so many people and it has been such a huge adjustment to simply let Bryson, family, and friends take on all the grunt work. Let me promise you how grateful I will be for the simple things. Driving myself and others... HEAVEN! Running to the grocery store....AMAZING! And I'm not sure I can even dare to dream but going to the gym....STARGAZED! Yes I am sure I will never be the same. I am truly grateful for the blessing of discovering this tumor (2 tumors) and having kept my family safe and protected. I am grateful that all looks well and that I have been guided and protected throughout the whole process. I have been blessed so fully and have been encompassed by the Lord through out the whole path. Thank you to everyone for the notes, messages, help, love, food, kids... the list is endless. And I dare not even name names because there are SO MANY PEOPLE helping us! OUR CUPS RUNNETH OVER! K so do something for me... GO AND SQUEEZE THE ONES YOU LOVE AND KNOW THAT THEY ARE EVERYTHING!

Friday, October 14, 2011

Last night was good (yippie!!!)

This has been quite the little rough dirt road, don't get me wrong I love a hilly dusty path but some times I'm ready for a green meadow.

Last night was relatively good. My pain level is living at about a 5, which is good. I am trying to wing off the oxycodone and am trying to get off of the narcotics. Since I have stayed in about the same pain level with the narcotics I think it's safe to say I'll be off it soon. Which is such a relief because I feel crazy, and my stomach is so upset (all smells are horrible, and food is poison! Lovely I know!) Last night I was able to sleep about 5 hours and then sleep again this morning for another 4 hours, this is a big deal :) I am starting to feel the incision which is good because it is so much less pressure then the swelling on the brain. I feel the staples, tingling, and swelling. Next week I get the staples removed and I'm sure they should help with some of the pain also. My face swelling is going down and the exterior of my head is also getting less swollen.

So that's the big update, pretty lame but I feel like I am turning the corner and feeling slowly but surly better. I can not wait until I have the energy and hope to leave the house and even enjoy the outdoors, soon enough!

Wednesday, October 12, 2011

Hey guys it's me :)

K so I am sort of awake so hopefully this post makes sense! I have had severe pain since the surgery. The pain scale has never dropped below a 5 and is currently living at about an 8-9 pain level. So needless to say I have had a hard time. Seriously I have never had pain like this. Yesterday I was begging to return back to Huntsman Hospital. We have all been working very hard to help with the exact right meds. And the steroids are helping the most, so we have just doubled the steroid so hopefully the brain swelling will decrease and give me the comfort that I need. Dr. Randy Jensen just called us and told us basically all the same stuff. The pathology looks the same as he thought. He did remove all the tumors (yippie.) He is still leaning towards a benign tumor but the second pathology result is not yet in, so for a perfect result he will let us know later this week. He really just wants the second result.... so we wait but it all sounds good. Next week I get my staples removed, then I wait. I have more swelling in my face now then when I left the hospital? Super frustrating!

As far as the speech we think everything is good. I do occasionally have to really strain for a specific word and occasionally can not come up with the right word. But most people can not even notice. Plus I am HEAVILY drugged so that of course is not very clear in my head. I meet with Dr. Jensen in 3 weeks and we will further look into any speech therapy, but now it seems good. I am so grateful for this!!!

This has been an extremely hard week for me. It's funny because I pride myself on being tough, but I'm learning that tough is nothing. I have had to dig very deep and give every ounce of faith and prayer that I have. I am so grateful for the Lords help through this trial and could not imagine not being able to drop on my knees at any given moment. Bryson has been the most amazing rock ever. He has done everything for me and he is my world. This has really been the only time in my life where I have had to rely 100% on him. He has given me the greatest care, love, and help. He is the BEST!

Again thank you so much for all the love, notes, food, help, cleaning, yard work, rides.... I have been so blessed by this experience. You have all made such a special part in my heart and I am forever in debt. I am hoping that I will feel good enough in the next few days that I can have visitors. Thank you for giving me the recovery I have needed, just know I am so grateful for all of you!

An Update

This is Season, posting for Summer:

Summer is home from the hospital. She has been in a lot of pain. They are trying to manage her pain. We are all looking forward to getting the tumor analysis tonight. Hoping it is benign. They should get the results later tonight, however it could be as late as Friday. So please be patient. When Summer and her family find out, they will let everyone know.

Thanks for the love, prayers, and hope. And fancy fruit baskets. ;)

Saturday, October 8, 2011

A Pretty Good Night.

Hospitals have to be the hardest place to sleep in the entire world.  Alarms sounding all night long, nurses in and out constantly and beds that would be rejected at the homelless shelter.  That said, last night went pretty well.  We didn't sleep much but Summer is somehow felling much better. 

She passed on the morphin this morning and she has had her arterial line and cathiter removed. She walked to the bathroom on her own and the great news is  she will be moved from the Special care unit to the floor later today.  She says she is at a 5 on the pain scale now which is a far cry from the 9-10 of last night. 

Friday, October 7, 2011

Summer's all good.

Finally! Surgery is done! 

So this is pretty cool.  Summer was the first person at Huntsman to have a removal of a brain tumor while awake with use of the new portable MRI unit.   Because of the groundbreaking operation, it took a while to get it all set up (2 hrs).  That said, everything went very well during surgery. 

The night before the surgery, we gave Summer a blessing at the house.  I felt the spirit direct me to bless her with a surgery that would go well and that "All the Tumor would be removed". 

Initially I felt this was maybe just my desires so I skipped the word ALL but after skipping it I was immediatly prompted to add the word ALL so I listened.  I was at first concerned that I may be putting my will first but then had the impression that I needed to listen to the spirit and have faith that God would fulfill his promises. Afterwords, I told my dad about the impressions and he actually had a similar impression during the blessing.  Pretty cool. 

That said, I felt calm and at peace before the surgery and now I know why. The surgery went amazingly well and guess what.  All the tumor was removed and it all went very well.  The Dr. said Summer was even joking with the team during the operation.  Before the surgery really began the Dr. said I want you to make sure I don't hurt you so please let me know if it hurts.  Her reply:  "You can't hurt me."

The DR.  was optimistic that the tumor was benign once removed. They actually removed 2 tumors. One was the size of a pea and one the size of a grape. We are still waiting for the pathology report and should get that back on Wednesday next week. She will spend tonight in the ICU and then they expect to move her to the normal ward tomorrow.  She will be able to go home as soon as she feels ready according to the Dr.

She has been in a lot of pain today since the surgery but seems to be feeling much better tonight.  Thank goodness for Morphin and Percocet. 

Thank you for all of your prayers. They have been heard and answered.

Wednesday, October 5, 2011

here is the schedule...

Thursday I go into Huntsman for a pre operation meeting at 2:30. I will then know exactly what time my surgery is at on Friday (we have heard early am but getting bumped is always a possibility!) Then I have a MRI at University Hospital at 4:00. Then we plan to just have a fun normal night as a family! Surgery begins Friday morning and is expected to last about 5 1/2 hours. When Dr. Jensen comes out to tell Bryson the results he will know if they have been able to remove all of the tumor. Bryson will update the blog and link it on Face Book with my name, so that will be the easiest and best way to get info. Also just realize he is now doing everything so he will update when he can and when he feels it is necessary. I am looking forward to Friday, I wish it were here. Moving forward and upward is all that is on my mind!

Saturday, October 1, 2011

My favorite family pics ever!

Seriously these pics fill my soul with joy and gratitude!
I am one lucky girl!

Yep I have the greatest most fun family in the world!

Friday, September 30, 2011

The good, the bad, the ugly...

Well I have gotten a lot of feedback from everyone that I am so positive that there is no way I always feel like that. The whole truth is that 98% of the time I feel truly optimistic and grateful that we are able to deal with this newly discovered tumor. Seriously I do not say things that I do not mean, that's just not me! If I choose to say it then I entirely mean it! That being said last night was horrible. The most frustrating part is that yesterday I felt great, maybe looking back I over did it. But seriously it is hard to feel kinda ok and just sit on your rump. I SOOOOOO miss the gym, I so miss driving, I so miss going to my kids school... ok this could go on forever, I miss everything. So yesterday when I had a lil energy I cleaned, vacuumed, and even made a meal which made me nervous (just in the event that I do have a seizure and am holding something hot or glass in my hand? oh well) All of these very mundane motherly tasks I SOOOO enjoyed, you know just a bit of purpose is always good. Then Bryson and I laughed our way through the night while enjoying our favorite tv comedies! Then as soon as we jumped in bed I started to feel weird. At first I simply could not go to sleep, then I started to feel numbness and tingling in in my right cheek just below my eye! Then the blurred vision came to my right eye, and before I knew it I was up ALL NIGHT (lame!) This morning we checked with the dr and he again increased my anti seizure meds (keppra.) The funny thing is I have had this before about 2 years ago I was diagnosed with a sinus infection for the exact same thing? Pretty sure it was a sign of my tumor but it's impossible to tell when you have had previous CT Scans and MRI's and they saw/found nothing. And you struggle with migraine headaches which do give blurred vision? So the short story is that there were probably some early signs of a tumor? But I am grateful for where I am at now! The good news is that the steroid that I am on to help with the swelling on my brain is helping and my headaches are all but gone! AWESOME!

I have to thank everyone for their love and support! I know I keep saying it but I am in good hands. It has been amazing how in the last week many many many people have shared with me their personal stories of brain surgery with Dr. Randy Jensen. Or even just how they have worked with him! Seriously people I have not seen or talked to in 10 plus years. It is so comforting to have so many people aware of me and my situation!

Countless people have helped us in so many ways and we are SO GRATEFUL! I have learned through this whole experience not to ever ignore a thought or impression to go and help someone. I have had people call or arrive at the perfect moment and I know it was meant to be. I know that personally I have ignored some of my impressions/inspirations because I did not want to bother that particular person in need. But I am here to testify that they are on purpose and that they do make a difference, even if you just stop by to visit. Just feeling loved and cared for is a huge gift and blessing!

The goal for tonight is to SLEEP! wish me luck :)

Thursday, September 29, 2011

Taylor Swift

Yesterday was most definitely the highlight of my month. I know considering my month that sounds super lame... It was my mom's bday and as a gift we all got to go to Taylor Swift. If you know my girls then you know that they LOVE swifty. We were front row just left of the stage so we saw everything happening backstage. Examples: the band coming out before they came out, the dancers, the dancers changing.............. it was the greatest! I could not imagine going to anything more exhilarating with my girls. We were about 7 Feet from Taylor at one time and were often next to the singers, dancers, and guitar players (yep I got a guitar pick, then gave one away to a girl who can't catch, turns out I can even catch w a brain tumor ha!) We ran into Skyler's best friend and took pics which one of them ended up on the big screen! Also I never had any thoughts of this silly tumor for a full night I felt like myself (miracle!) Unfortunately Bryson did not get to sit by us, poor boy he was on the floor! He touched Taylor (no worries I'm not jealous) and at one point when she was chatting away she said something kinda like "Uh hey dude!" specifically to Bryson. My girls thought it was their birthday and even said "this is so much better then Christmas!" I CAN NOT WAIT TO GO BACK!!!

Tuesday, September 27, 2011

could it be another good doctors appointment?

This morning Bryson and I met with Dr. Randy Jensen at The Huntsman Cancer Institute. We have been awaiting this appointment for some time. When we got there we were escorted by some nice gentleman just trying to help us out. That place is quite beautiful and spectacular SERIOUSLY. When we arrived at the drs office we were immediately escorted into a room, I then did all the standards weight height allergies... When Dr. Jensen came in he quickly scrolled through my paper work then said "You are the one I have been getting all the phone calls about!" Dr. Jensen is great. I am so pleased with our appointment. He was thorough, he worked through the MRI's with us and pointed out areas of speech activity in relation to my tumor. Everything he said is the same as what we have heard, probably a low grade benign tumor located close to the outside of my brain and should be removed. He did say that I am his worst case scenario patient. I'm healthy and have everything going for me, so the goal is not to screw anything up. Which we all ready knew. Dr. Jensen sat with us and talked out the whole process. He described the entire surgery process and how exactly they get to the tumor. He also helped adjust my medications, he thinks I have some swelling on the brain due to the tumor, which may have caused the seizure. And that I am continuing to have small seizures, I think so too. He also thinks that reducing the swelling will reduce my headaches? He sat with us for over an hour (when was the last time you had a dr do that?) He answered every question openly. And I really felt at peace as soon as he opened his mouth. Here is the short story. I have a surgery date October 7th at 7:30 am, he could have done it earlier but he will be out of town this week. He estimates the surgery will take around 5 1/2 hours. I should be in the hospital for 2-3 days just until I feel like myself and recover from anesthesia. Then I will be quite fatigued when I return home but will be able to fix a sandwich and walk to the mailbox. All of this is good news to me! My case will go to tumor Board tomorrow as Dr. Jensen is the head of Tumor Board and that is just how he does things. I will have an MRI Thursday night before surgery. I feel like I am in good hands. So now we have to just pray for the greatest outcome possible and leave it in the Lords hands. Again I am sure I sound like a broken record but thank you so much for the love, support, prayers, food, calls, texts, messages..... I am so grateful for it all. I wish everyone knew how truly loved they are!

Monday, September 26, 2011

Taylor's Cardiologist Appointment

This morning Taylor had her 3 month follow up cardiology appointment. We opted to take her to the new Riverton IHC Primary Children's Out Patient Clinic. If you need to go to Primary's and you have the possibility of going to Riverton then DO IT! It is the best, it seriously saved us 1-2 hours of waiting! It was a very simple visit. Height, weight, EKG, then meeting Dr. Puchelski (Taylor's AMAZING doctor!) He took a short listen to her heart. Asked if she noticed a difference from the surgery. Which she said that she had, and I added that her exact words are "I've never felt so alive!" Dr.P said that she sounds great, he asked about soccer and was happy that she was the fastest on the team. He then told us a magical sentence... "We will see you in a year!" Those are the golden words, as good as it gets! Then Bryson and I asked about future Echo cardiograms, he said "She will not need one for years." And in regards to MRI's, he said "Uh I don't know maybe 10 years!" SERIOUSLY it was such a great visit, so full of peace and happiness. I am so grateful that she gets to feel at peace, be a normal kid, and not have to worry about her heart. Oh Taylor how dearly and deeply I love you. You are such an example of strength, positivity, and joy! Thank you for bringing endless happiness to our family!

Sunday, September 25, 2011

the biggest thank you i've got!

thank you so much...
thank you for your love, support, prayers, and fasting!
i know they are and will make a difference!
i feel so blessed and so loved!
i truly am at peace and am ready for whatever road lies ahead!
i wish i had the words to express my appreciation but simply put

Saturday, September 24, 2011

Here is my current status...After a lil bit of a frustrating Thursday things are starting to move right along. I am going in to Huntsman to meet with Dr. Johnson on Tuesday. I have to keep all day open and available because they are just going to fit me in :) My doctor, Dr. Pingree went up and met with Dr. Johnson on Friday to talk about me. Dr. Johnson is the only one who does the awake surgeries in the state (there are very few dr's who do them in the country!) So I am excited to have at least the chance to meet him and to discuss further plans. I have been warned that my surgery is extremely rare ( I know I have said this over and over) but it is going to take a very specific team assembled for my surgery. There is only one anesthesiologist team that will be putting me to sleep then pulling me out of it. There is a therapist who will be talking with me and having me answer questions. There will be a number of neurosurgeons there... so it is complicated and they continue to reassure me that they are doing everything they can. And of course I want it done right.

As long as I get a normal nights sleep I feel good. But if muscle twitches keep me up then I only sleep 1-3 hours and then a massive migraine comes on that lortab can't touch then I feel like garbage. But I am excited to be getting back to normal and to feel like I can in some small ways contribute to my family.

Also Taylor has a follow up appointment with her Cardiologist Dr. Puchelski at Primary's Monday morning. I think it is a very basic appointment. She is doing great and averaging a couple of goals every soccer game, we have no concerns or worries!

Thank you to everyone for the blog comments, emails, texts, visits, meals... They do mean a lot and are so helpful. I could not imagine going through a situation like this and feeling like I was all alone. I KNOW I AM NOT! This thing makes me just want to go to the hospital and befriend all those people who are alone :) seriously.

I feel completely at peace. I will get through this and as soon as I do I may live my life a little differently. I am no longer afraid of anything, what is the worst thing that could happen? Seriously!

Thursday, September 22, 2011

an update full of very little new news...

This morning we called Dr. Pingree's office. The receptionist had no news of the tumor board reviewing my case. But said that she would have Dr. Pingree call us as soon as he was out of operation. We waited until about 10:30 when the receptionist called us back. She told us that my Dr. had no knowledge of my Functional MRI being done?... I believed him but am bothered, at that point Bryson was also bothered (bothered is a nice word for how we really felt.)  Bryson then worked out a plan to pick up the MRI results from the University Hospital and deliver them to my dr. Otherwise it would take my dr's office days to receive them. When we dropped them off we were able to meet with my dr. He apologized for the confusion and basically blamed it on the large university program. He then told us that as soon as he heard I had the functional MRI he called the radiologist, who essentially agreed with everything he had seen in the first MRI. It appears the tumor is low grade, probably benign, slow growing. There is a possibility that it is not a tumor at all and could have been a congenital brain defect that I was born with. But they can not be sure unless they biopsy it and look at it, which takes around 2 days for the stain to fully sink in and for them to be sure of what it is. The tumor is around or near the speech center of my brain. They will not be 100% sure of location until surgery. It is not near the movement part, so no matter what I will be able to move my body and face (good news).

The current plan is... Dr.Pingree is going to call Dr. Johnson at the U (he is the only dr who does the awake surgeries, and don't worry there will be a full team there.) They will discuss if they still want to present my case to the tumor board or if a biopsy is best. If they do a biopsy then they will know exactly what the tumor is and how aggressive they need to remove it. They want to save my speech. I want to save my speech, so I am being as patient as needed. My dr explained it like this: I will still be able to think of the words and sentences but they will not process in my brain properly and will not come out the way i want. I will hear them and will know the words are not right and I will be super frustrated. I also may not be able to write them properly. His example was... I would want to say :"The pen is green." and I would end up saying "The apple is red" yep that would be frustrating. So we should know more possibly tomorrow. But we are again waiting and I beg all of you to be patient with me. There is no use if they drill into my skull and screw everything up.

Here are a few more good things. I no longer need to be baby sat/left alone, it is a good sign that I have not had a full fledged seizure since last Monday. I am having small muscle twitches, but the dr in unsure if they are small seizures or side effects of my medication. That being said I'm not sure Bryson is comfortable leaving me :) Also I asked him about my hair loss, he said he is a hair preserver and that infection has little to due with hair removal. Now he probably will not be my head surgeon but if it was him he would need to make a big question mark cut from the top of my forehead to my ear. He would then only shave around the ? incision. So will see, seriously I could care less and would just make my hair a fun crazy style and rock it! Also we asked him about how long until I could possibly drive. He GUESSED that after 1 month of recovery I could maybe drive. that sounds good to me :)

K I promise to update our blog when I have updates. LOVE YOU ALL, THANK YOU FOR ALL THE LOVE!

Monday, September 19, 2011

Functional MRI

I just barely got home from my Functional MRI. It was up at the University Research Park. I have a funny feeling I am going to get real used to that place. Basically a functional MRI is when they ask you to do or think specific things so they can more clearly understand exactly where the tumor is located. And by exactly I mean exactly. They want to have as much info before they go in as possible.

During the MRI I did things like think of as many words as I could that started with a specific letter then stop when they asked me to rest. I never spoke, the MRI machine only needs thoughts (interesting huh?) Then read a sentence and finish the last word (example: Put the dirty dishes in the ___________. ) The sentences cruised through and I just had to read them quickly then fill in the gaps with my thoughts. I also had to shut my eyes and let my mind wander for 10 minutes! That was brutal! And I had to squeeze my right hand on demand. I told the Dr. I wouldn't tell anyone (but no one reads this blog :) right?) during the MRI the screen that gave me the reading commands came crashing down, it was a lil scary. But I told him if he hurried up and worked through my functional scans that I wouldn't tell anyone ha ha.

So apparently the basic MRI scans are ready to be presented to The Huntsman Round Table Group, but the functional scans can take days to review and edit? So I tried to get the Dr. to finish ASAP because my mind might blow up not because of this tumor but because of waiting, I swear if it's one more week before Huntsman reviews it I might not be able to make it. He assured me he would do it as quickly as possible... ie the screen falling down! On a positive note they told me that I was one of the quickest functional MRI's to ever take place from the time of scheduling. Apparently it could take weeks to get in? He was extremely discreet about the info he could give me but did let me decide if I wanted to see the MRI. I got to see the tumor... which was in it's own way kinda cool? And so strange to think that I was looking at my own brain, it looked bigger then I expected and I asked him to measure how far in my brain it is. The rough measurement is 1.2 centimeters. Surprisingly far in, but he also did not want me using that as fact. So let's just say it's in there :)

Now we wait. I am so looking forward to having a surgery date and moving forward and on. I will face whatever I have to face, but waiting is killing me. Hopefully I will hear from my Dr. late Wednesday night or Thursday morning.

Saturday, September 17, 2011

A beautiful life

Do you remember the movie A Beautiful Life? Well it has been bouncing back and forth in my mind today. I remember going to see it on a date when I was in high school. I had no idea what type of movie it was and knew nothing about it. As it began I was like "Uh we are seriously watching a movie with captions?" To say the least I was not prepared for what was to come. The lead actor simply took the audience onto a train of inner thoughts, happiness, and beauty. HE WAS HE HAPPY. He helped others who were around him to be happy. When his son entered the Nazi concentration camp he continued to see life as a beautiful place. Straight up I realize my life is NOTHING like that, and please know I am not comparing. But I can not help but compare my mind to his. It has been such a powerful tool. I truly wish that every single person could experience the love I have felt without going through any struggles. I have felt the love, kindness, prayers, compassion, positivity, service and the plain old happiness of the world. I am here to tell you that it is such a GORGEOUS place encompassed in JOY! In five days I have learned a lot about myself and I can honestly say I am proud of the person that I am. And I'm sure I am going to grow so much from this little trial. It's funny because I have always prided myself of being the toughest girl I know :) But sometimes strength is shown is different ways, so for now I am going to focus on growing and becoming more refined. If there is one thing that "something scary" can do it is put life into true perspective. Only the big things matter and it's up to us to discern the big things.

My family and my friends are my world. And somehow it seems like people either show up at the perfect moment or send me the perfect message. Honestly feel free to just stop by. I have had so many requests and I can not respond to them all. But you are welcome and I would love to see old friends :) Also for all you cyclists please come and pick bryson up for a ride. we are going to need moments of normalcy to get through this and I have countless friends who can come and hang while Bryson gets a break :)

As for me I want to not only be positive but truthful so... I have great times where you would hopefully know nothing was wrong. I also have times where my headaches are so severe I can not even get out of bed or fall asleep. My migraines come on like lightening and have no warning. My muscle twitches are also making sleeping nearly impossible. I do have to think quite hard to sound normal and smart.  Last night Bryson and I went out on a date and it was AMAZING, for a brief time I felt like Summer and it was such a blessing. Unfortunately around 2 am everything turned and i felt like my head was going to explode. I am looking forward to having my case go to Huntsman and finally have some type of surgery schedule.

Thursday, September 15, 2011

no news is no big deal? right?

So one of the things my neurologist pounded into my head was to be patient. He kept focusing on the fact that this tumor is in a very rare location (the speech center of the brain) and that it is going to be a very complicated process even figuring out the right procedures for removal. So I have absolutely no news. My Dr did not present my case the the Huntsman Cancer Board Wednesday and has decided that he would like the results of a functional MRI to present. Thus I have an MRI scheduled on Monday afternoon where during the MRI I will talk, read, move, answer questions... Then my Dr will present my case to Huntsman. So Our best guess is that my surgery is anywhere from 1 to 2 weeks away. They are much more concerned with doing it right then doing it quickly. So Bryson and I are both doing our best to stay positive, calm, and patient :)

Just a lil status update. To my knowledge I do not think I have had another seizure. But I feel so strange it is unexplainable. I have had extreme muscle twitching which can even move a limb. My sense of balance is out of whack and is making walking difficult. The guess is that the medications may be causing this. I am also having to think 3 times as hard to sound smart (ha ha) and kinda have moments of blank thoughts. And it turns out that a seizure is harder on your body then any soccer game ever could be! Surprising I know!

I have to take a minute to thank the cutest guy I know. Bryson has taken on every single responsibility around here. He is amazing. I knew when I married him that he was my perfect match, and now after nearly 11 years of marriage I love him more then I ever knew I could. He is my world and has stood by my side through the good and the kinda ugly :) I am not allowed to be alone due to possible seizures so we are together, and it is so comforting to know he is here! Babe you are the greatest hubby in the world! LOVE YOU!

Also thank you to everyone for all the love, support and prayers! I wish people could feel this cared for without going through such a struggle! I know they are making a difference and I feel so blessed to be so cared for. I can honestly say I have cried more out of feeling loved then feeling sorry for myself. THANK YOU SO MUCH! LOVE YOU ALL! I so wish I could thank each one of you individually but I know I would leave someone out.

Wednesday, September 14, 2011

Sometimes life gives you lemons.... I am for sure making lemonade or even how about a lemon chiffon custard :)

I wanted to give a quick update of everything that happened to me and my family on Monday. I actually have been feeling quite bad for a week. I've had a severe headache and was concerned but just hoped it would go away. On Monday night I had loaded the kids in the car for soccer and was trying to put the keys into the ignition when I began seizing. I remember very small tidbits... shaking in the front seat, my brother Konnor at the door, and then the paramedics. So in a time span of 10 minutes i remember less then 3 seconds. But this is not normal for a seizure, normally you remember nothing and no not come out of it for 10 minutes and on.

I have to look back at the whole situation as a COMPLETE MIRACLE. Seriously what if I had been driving with all of my kids? My siblings Starr, Sharwan and Konnor had been staying at my house and all were home. I KNOW IT WAS BY DIVINE APPOINTMENT! I know that the Lords hand was in everything and helped everyone to be safe in the situation. I will be forever mindful of the Lords hand and of his love and concern for my family!

While I was seizing Taylor sent Skyler into the house to get help. Skyler ran into get help and yelled to Konnor "Something is happening to Mom!" They ran outside and Konnor ran to the car door then sent Sky to get Starr. Sharwan came out to the car followed by Starr.I was convulsing in the drivers seat. Starr and Konnor pulled me out and carried me to the back of the car, I began foaming at the mouth. Sharwan then called 911 and they realized the ambulance was coming so they did not need to drive me to the emergency room. They then layed me onto the grass. Then Konnor and Skyler ran to the neighbors to get help. When they got back my convulsing had stopped and I had passed out. I stayed passed out for about 1 to 1 1/2 minutes. When I woke up I was still very out of it and had extremely slurred speech. I demanded I get the kids to soccer and soccer pictures I fought Starr and pushed and started to stand up. Then Konnor grabbed me and made sure I could not stand up. From this point it took roughly 3 to 4 minutes until the paramedics arrived. At this time we had a lot of neighbors here to help. I remember talking to the woman paramedic who was giving me a choice to ride in the ambulance or get a ride from my family? How bizarre is that???????????????????????????????????????????????????????????????????????????????????????????  I must of sounded ok but I definitely was not all there. At that exact time Bryson had the impression to call . He was on a work trip in Minnesota and I was scheduled to go out for my first time on Thursday :( Sharwan returned Bryson's call and Bryson was able to take charge of the situation and tell them to take me directly to St. Marks. They decided on st. marks because of the cat scan/ mri/ and the specialists and the fact that it is closer the the University Hospital.

As I drove all the way to St. Marks I was all there and the paramedic talked tome all about seizures and explained tidbits of why my seizure was not "normal". I remembered small mili-seconds of it and I came out of it and started communicating. This was also the reason they wanted to "look for something else". Sweet Starr followed in her car and I could see her the whole drive.

I had tremendous treatment and care while in the ER. They took blood and did a CT scan and saw a mass so they then did an MRI. I knew something was up when the MRI tech asked me a million questions about what happened, so i was slightly prepared for some type of news. My father in law Tom and my parents quickly came and entertained me :) When the results of of the MRI came in my er Dr came in and turned off the TV and backed up to the wall, clearly she had news and it was not that good. she very simply said she had seen a mass probably a tumor in my brain and that she would let the Neurologist come in and explain further. We waited about 30 minutes for the neurologist and it was clear he was not on duty when he came in. He explaining out of all the tumors to have this was a very good one. It does not appear to be cancerous and is the size of a quarter or smaller. I may have had this for years or longer? They will not know for sure of if it is cancerous until it is removed. It is in the left side of my brain about 2 inches above my ear. This is in the speech center of my brain, which is the bummer. So they need to do a lot more tests to verify it is in the speech center and if they are correct (which I am sure it is because words are not coming out that easily) the operation will be will me awake so I can communicate as they touch different parts of the brain and they nay not be able to remove the entire tumor? To me that is the only scary part :) Today my neurologist is presenting my case to the Huntsman Tumor Board and he is assuming they will agree with him (he was at Huntsman for 10 years) and have my operation at Huntsman Cancer Institute. He is going to need to research and as he said "get all his ducks in a row" for my surgery. This is quite rare and his estimate is I will have surgery in 2-3 weeks. He has asked me to be patient, which I will try to be.

There was actually 2 earlier little seizure episodes but they only occurred verbally. Roughly 4 months ago I said a prayer and the correct words simply could not come out of my mouth, once I said amen I made sense again. But I was scared by it and joked that I had had a brain aneurysm and after Taylor's surgery I said something to bryson that did not make sense but knew it did not make sense and would not repeat it. The Dr guesses that this was a seizure but only in my brain. The one good thing is that I now know I was not loosing my mind haha!

I was only in the hospital for 1 day. And since I am on anti seizure medicine I have not had any physical seizures. But I am still having them in my brain. Which means a loss of words or absent of thoughts or even kinda zoning out for a few seconds. It is super strange to not feel like myself and even a little frightening. I feel quite horrible. My body is thrashed, worst then any sporting event. My muscles and joints kill and are super soar. I am able to walk am supposed to get my body back but I can not be left alone. I am not allowed to drive obviously. And I can not lift anything heavy/myles :(

Another true miracle occurred while I was at the hospital. A dear long time friend of ours is a Dr at st marks Greg Anderson he stopped in to visit me and then pulled my parents into the hall. President Thomas S. Monson (the prophet of the LDS church) was scheduled to visit him in another location earlier that day but had to cancel and was going to try and stop by st marks later. Greg had told President Monson about me and we hoped I would get to see him. I was released and President Monson was visiting Dr Greg so I waited in Greg's private office with my parents and every sibling but Season (we miss you but know you were there in spirit). President Monson came in shook each of our hands and then sat next to me. He talked and told lots of funny stories. He thought my name was humerous and kept joking "Where is winter?" He then rubbed my hand for ten minutes as he talked. After 25-30 minutes he gave me a blessing. I will remember the spirit I felt for the rest of my life. He left my healing in god's hands but said he would be on my left side and my right side. He then said that he was sent there specifically for me. Once the blessing was over he said I was pretty, then said I should not say that but I'm an old Navy boy :) and he kissed my hand. I WILL NEVER EVER FORGET THE LORDS TENDER MERCIES AND THAT HE KNOWS ME AND IS AWARE OF ME!

My kids have been amazing truly inspirations. I'm sure we will all go through our own moments but they are strong and we are going to be positive through everything. Bryson is such a great pillar of strength I am so blessed to have him! He hoped on a flight home from Minnesota as soon as he could to get home to be with me. And now for the first time ever he gets to totally take care of me :) he is ready to be hot nurse! I am choosing to only have positive thoughts and words. I will be just fine. I WILL MAKE IT THROUGH THIS and be back to the same old summer soon. I know I have been blessed, guided and even supported by Heavenly Father every step of the way. He has been on my right hand and on my left! And I am so grateful for his love and support!

I have to thank everyone for all the help love and support. there is truly no way I would name names. My family has taken over. I have received endless texts, emails, phone calls, visits of love and support. And they have meant the world to me.

I am a strong girl with endless faith and I am positive that I will make it through this. Maybe I'm just being turned into a diamond and that is going to take some serious work :)

Thursday, August 25, 2011

It's official

Myles is now the official rider of a two wheel bike! Bryson walked in the door and said "Myles is going to learn to ride his bike!" He has been cruising on a push bike for about 4 months and he rocks. Bryson put him up on the bike, he has the balance thing down. The pedals are a little foreign, but he pedaled on his first try and biked the distance of the house and the neighbors house! Way to go Nyny at 2 1/2 you can ride your bike! Can't wait to see you race!

Thursday, July 7, 2011

A good deed does not go unnoticed (especially when it involves cutting off 12 inches of hair!)

Sweet Taylor noticed some of the girls her age did not have hair while she was at Primary Children's Hospital this summer. Especially when she played in the Forever Young Zone there was a girl about her age who wore a hat to cover her head. Ever since she learned of  Locks of  Love she has been obsessed with cutting her hair to donate. She has been begging and nagging me every possible second. 

Taylor's exact words for donating her hair are "This summer I went to the hospital for surgery I saw some girls my age who had cancer and did not have hair. I wanted to help. I hope my hair helps other girls feel better!"

 So we cut off 12 full inches!!!! I'm sure it will be back in 2 years, wish my hair grew that fast!
I'm so proud of her for being such a great sensitive kid! She is such an example to me, how blessed am I to have her as my daughter!!!

 So then Skyler decided she wanted to look exactly like Taylor? Funny she LOVES being mistaken for twins! So she cut her hair and hopes it will help a little girl but mostly wans to be just like Taylor :)

 Bye bye 10 inches!

 I love their new hair, they look so cute. To bad no more pony tails!