Prayers for Tolan's Surgery

If things are on schedule at the hospital (which they rarely are), Tolan should have been wheeled into surgery about 20 minutes ago. For those of you that read this post this morning, please join me and my family in prayers for him and the doctors and medical personnel. We have had enough medical drama lately, that we could really just use a "smooth sailing" no complications procedure today. He will be in recovery for a few hours afterwards, then will be released to begin recovery at home (he will be at his parents' home).

Tolan felt good this morning as he left for the procedure. I wish I could be there with him, but I am so grateful his mother is able to take care of him this weekend since I can't. Thanks again for all the support and prayers!

I will try to post again later with an update on him and any news from here. :)

Old News and New Realizations

Tolan and I are still on Cloud 9 after our positive appointment with Dr. Couldwell on Monday. The words "best case scenario" keep coming to my mind and I am so grateful that things are going as well as they are. Yesterday I became even more grateful as we visited with some friends who put a different perspective on things. My mom's friends from Hawaii (Kinghorns) were in town and stopped by to say hi. Ed Kinghorn is a professor at BYUH and though I don't remember his exact title, I know it is "Neuro" something, meaning his specialty is the brain. Though he told us that he never expressed this to my parents, he confided in his family the truth of my situation upon hearing it. When he found out where the tumor was and what it was affecting, he said to his wife, "She's toast" and explained there was no way I was going to be able to survive a tumor in that location.

And yet, here I am. Forgive me for continuing to express that I think miracles have happened, but each day I come to grips with the fact that my own mortality was truly hanging in the balance just a few weeks ago, and today I am a "best case scenario". After following my story, seeing me yesterday and hearing my doctor's updates, Ed Kinghorn said another profound statement, "Well, you had half the world praying for you, so you ought to be a miracle!"

I know that not every medical (or other crisis) ends in a miracle. Babies, children, teens, moms, dads and grandparents die everyday. I have felt the deep sadness surrounding these events. I know that these families suffer deeply and may not understand the "purpose" of the death of their loved one. They may question or blame God. Though I can understand the emotions, I can never question. I truly know God has a plan for each of us, and though we may not know where our road leads, He does. Sometimes I think He gives us miracles as a reminder that He really is there, loving us and looking out for us. It is the divinity of God and our Savior that allows us to experience miracles, feel a touch of heaven, and know that we have a chance to get back to live with them and our families again someday. How blessed I am for this knowledge!

So, no matter how "old" it may get for some to hear (especially my family who hears it all the time), I truly know that angels have been with me and my life is a blessing and miracle. I may have been to hell and back, but it was worth it to know of the blessings of God and our Savior. I know they love me and would have welcomed me home with open arms...I felt that peace, but it was not my time. It was a time for miracles instead. :) Thank you for being part of a miracle for me.

Post-Operation Update Miracles & Surgery for Tolan

Today it has been 2 months exactly since my first life-changing surgery. I had an appointment with Dr. Couldwell, a follow-up to check on my progress. My father-in-law, Larry, drove me there and my sister, Kristi, came along to visit. Tolan met us there, too. The visiting time with my loved ones has been such a nice, unexpected blessing!

When Tolan and I met with Dr. Couldwell, we were both pleased to hear that he feels like I am progressing as well as can be expected. Many of my restrictions have been lifted, and as my strength (and sight) allows, I can start trying to be more normal (ie, picking up my kids and other objects over 10 pounds, getting weaned off some of the strong drugs with yucky side effects, etc). I will still get worn out and need rests, but I am allowed to purposely push myself a "little" more now. Again, my challenge is always to learn how to push without overdoing it (I have never been good at finding that balance, I usually overdo it!).

Dr. Couldwell also felt confident that my paralysis is temporary and reassured us that during the surgery they tested the nerves and they were in good working order (how you do that, I don't know). Though he couldn't put a time frame on it, he really believes I will be recovered from all the face/paralysis/skin/eye problems within a year or less! What wonderful news! My next appointment with him will be in 6 months, at which time another MRI will be done to exam the remains of the tumor. He said he believes the tumor may not re-grow because the pathology report on it showed that the tumor itself was nearly all removed. Though there are still some pieces of it on the brainstem, they do not believe these sections will be able to reproduce without the main "mass" of the tumor present. WOW! Best case scenario and truly one of the miracles we have been looking for.

So, despite originally being told I had an inoperable brain tumor in a very bad location, there is a good chance I will make a full recovery and still be able to live a long, healthy life without further brain tumor issues!! Miracles, miracles!

Though most of you have seen the photos of me in the days following my original surgery, I was quite shocked to see all of them when I got home. I was in tears when I saw how really sick I looked. (See the reminder photo below...rated PG and not nearly as disturbing as many of the photos we have on our computer.) I wondered how hard it must have been for my husband, parents, children, friends and loved ones to see me looking so frail and sick. I realize now it is much better that I didn't get to see the real "picture" of myself at the time...



In comparison to that, my life now is a piece of cake, with just a few crumbs missing. :)

So, the other piece of news is that Tolan is having surgery on Thursday, for a torn meniscus in his right knee. The truth is, he was in the process of doing all of this before I was diagnosed, but his plans were all put on hold when our lives suddenly turned upside down in April. His surgery has been rescheduled 4 times, each time thinking I would "be better" by the time the new date arrived. Well, I am still not all the way better, but he needs to have this done so he can start to get better, too.

Tolan will have surgery on Thursday at a specialty IHC facility in Salt Lake. My mom will stay with us through the weekend (she normally goes to her home to Orem on the weekends to recover a little) and Tolan will stay at his parents' house in Roy so Kay and Larry can take care of him. It is hard for us to feel like we are still a burden on our families and friends, but we truly appreciate all the help and support. Tolan is supposed to be "down" for 3-4 days, then can start to put pressure on his leg as he feels comfortable.

Please pray with us that he will NOT experience any complications (we are more skeptical these days!) and he will heal quickly and easily!

Thanks so much for all the continued support! We love you all and are still amazed by each of you!

Family, Angels and Dates

Sorry I haven't posted in a few days. Friday was a rough day for me. I was "on my own" for the first time, and I admit, it was tough. It was just a matter of schedules not working out quite right, but I was home with the kids alone that day and it turned out to be more challenging than I thought. My physical body is still not as strong as I would like, making it difficult to care for my kids. The other struggle I have are my headaches, which are often present, but usually tolerable -- until acted upon by loud noise (ie. music or kids playing or fighting), or sadly, even just little things like too much movement, etc. So, needless to say, I quickly found myself in a tricky situation.

This made me even more grateful for my mom, who has clearly been a "buffer" between me and my children in the 4 weeks (wow!) since I have been home. She has taken care of everything, from refereeing the fights, to putting kids down for naps. She is an angel and I become more grateful for her everyday.

Just when I was struggling, another angel, a good friend, showed up on my doorstep, feeling like she needed to check on me. Together we cried and she comforted me when I was down. Even though I told her I didn't "need" anything, she showed up a few hours later with homemade pizza for dinner that night. Belinda is a saint. Later that afternoon, Debbie Cox, another dear friend came to visit. These sweet ladies cannot imagine how much they helped me that day!

I "recovered" enough that Friday night, Tolan and I went out on our first "date" in months. It was wonderful to spend a little time alone together. :) I still need to learn my limits, because even sitting down in a movie theatre was too much for me by the end of the show, but what a blessing to get out and about with my wonderful spouse! I don't know how he keeps up the energy to keep everything going on the weekends when we are "alone" at home without help from parents. Amazing.

I also had a great visit the other day with Ryan and Jenny Rackham, just down the street from me. I continue to be amazed at the love I feel from such wonderful friends and neighbors. Tears of joy streamed down our faces as we shared stories and feelings. I am so blessed to have so many angels in my life.

Yesterday was also a special day for me. The Orgill side of the family had a cousin get together. We have all talked about this for a long time, now that we are all adults with our own families, but this was the first real gathering of its kind. We discussed this option at our Grandma's funeral in January, one of the few times all of us were together. I'd like to think that last night was the start of many more great events to come...somehow silently honoring the Grandmother that we all love who started it all. (Just wish I had pictures from the fun evening!!)

My cousins were a most welcome sight. I cried with each hug and every face I saw. These amazing family members did so much to buoy my spirits along the way and they will never know how much they mean to me.

Another bonus was that I got to see my siblings, Brandon, Scott and Kristi, before the gathering, and enjoyed the company of my sister and brother-in-law, Tami and Dave, while we were there. (The others had prior commitments.) My dad is also in town again and that is always a treat to see him. Every time I think of him, I am still amazed and honored that he sat by me in the hospital, day after day, hour after hour...such love and devotion I will never forget!

In Orem, I also visited with our dear friends, the Pimsakuls. These amazing people have been so supportive of my family, not only for the last few months, but for the last many years. They have been great neighbors and friends. Their strength, attitude and testimonies are blessings in all of our lives. (Not to mention their homemade egg rolls are the best around!!) We all love them dearly and are grateful for their family!

This week I am excited because my sister, Kristi (from Hawaii), will be joining my mom in helping out at our house. I am looking forward to the time we will have to spend together! More updates on this to come!

Healthcare in America CONTEST and Feeling New

I hear nearly every day on the news about the controversy over healthcare in the U.S. Critics say the cost is too high, the insurance system doesn't work, and the process simply isn't functioning properly. I'd like to provide an alternate view to those opinions.

Yes, the cost of healthcare can be high, but we are so blessed to be in a country where we have access to the very best medical technology in the world. I am sitting at my computer today because of this technology and the physicians who spent years of training to hone their skills and who are brave enough to try something new. We were told my brain tumor was "inoperable" by an entire team of specialists, before we found Dr. Couldwell. His specialty is listed as working on parts of "the brain previoulsy thought to be inoperable". He was "lured" here from back east to be part of the U of U and Huntsman Cancer Center Hospitals, where they are doing new and experimental, LIFE-SAVING procedures. Do I think his per hour fee is high? Yes, I do. Do I care? No, I don't. It because of people like him that I am alive!

CONTEST: It has been interesting to see the medical bills start to pile up. I decided some time ago to make this a fun process, rather than a painful one. So, here goes. We want all of you who read the blog (even if you haven't commented before) to submit your best "guess" as to my total hospital and dr. bills to date. The person who comes the closest to the actual amount will win a fabulous prize (still to be determined:). This is all in good fun and will hopefully help us appreciate how good our healthcare really is, even if it does cost a bit (thank goodness for insurance).

So, please base your "guess" on the following info:
* 2 MRIs to diagnose the tumor
* Multiple dr. apts. with specialists, neurosurgeons, ENTs, etc.
* 2 Full body CT scans and 2 more MRIs prior to suregery
* 2 Craniotomy surgeries, the first with 1 neurosurgeon and 1 Neuro ENT, the second with a Neurosurgeon (10 hours of surgery total)
* 2 Lumbar drains, inserted and removed
* 4 CT scans in the hospital
* 1 Brain surgery to seal the Euchstation tube, by a Neuro ENT (2.5 hours total)
* 34 days in the hospital, 28 days in the Neuro Acute Care Unit, 6 days in the Neuro Critical Care Unit
* 1 "Gold weight" eyelid surgery by an opthamologist
* 3 Follow-up apts (1 with each specialist)

So, give or take a few minor procedures and hundreds of shots and doses of medication, this is the basic list. GUESS AWAY!!! Oh, and I don't know the "correct" answer yet, as bills are still coming. We will determine the winner in about a month.

A special thanks to my good friend, Becky Sevy, who gave me a wonderful haircut and color this morning (and gave Lindi a darling haircut, too!!). When I saw the finished "product" in the mirror, I wanted to cry. My hair looks "normal", even if my face doesn't. :) You can't see the big patches of hair that are missing because of the wonderful style. I feel "new" and refreshed by this great change. Thank you, thank you! It may seem like a "little" thing, but feeling normal is very big to me! See the pics below of my new "do".

Eye Updates and Inspiration

(Warning, long post ahead:) Tuesday morning I had an eye appointment in Salt Lake. My good friend, Debbie Rhoads, was kind enough to drive me there. The long drives to appointments has turned out to be one of the blessings in this experience, as I have had much time to visit with people I love. :) The appointment itself was fast (amazing for doctors' office visits!) and Tolan (who met us there) and I were able to spend a good amount of time with the doctor. He looked at my eye, now 2 weeks after surgery, and gave us some good news and bad news.

* Good News: My cornea has healed nearly 90% from its pre-surgery condition. My vision has also improved (tremendously) in my right eye because my eye is no longer as dried out and irritated, and therefore better able to focus.
* Bad News: My lower eyelid is inverted, or turned inside out. The pink part (usually inside the eye) is sticking out because of the collagen implant that was placed there to build up the lower lid. The collagen was an actual implant and he had to choose the size of the implant for my condition; he went with a 7mm implant, which is not settling into place as nicely as it should. In hindsight, he would have gone with a 5mm, but there is no way to tell ahead of time.

So, what does all this mean? Well, my eye really doesn't work for me yet. Because of the exposed section, the eye is protecting itself by constantly producing lubrication to cover the "inside out" part of the lid. This means that my eye is nearly always filled with "goop" (think about a clogged tear duct in babies) and is sealed shut every day when I wake up. I can't see out of it well because the lubrication makes my vision blurry. This makes my depth perception and overall vision off, making it nearly impossible to drive and harder to walk around in areas where I don't know the "lay of the land". I also don't have good peripheral vision, and have been known to run into my little ones, not even realizing they were standing next to me. Oops. :) So, the difficult part is that we have to "be patient" (says the doctor) and wait it out, perhaps as long as 6 more weeks to see if the implant drops into place.

I've decided the being patient part and waiting is one of the many lessons I have to learn from this experience. It is hard for me to wait and it is very hard to think about several more weeks without use of my eye (and therefore no driving). Another little setback that can be discouraging at times, but still, a small thing in the scheme of things.

On to a happier note, over the weekend I had the chance to spend time with my good friend, Jodi Carlson, whom I wrote about in a couple of earlier posts, including a tribute to her before my surgery. We used to work together and became good friends back then. Today, we are the "Jodis" whose lives are totally changed, yet we have many similarities. Jodi C. had a stroke and I have my tumor, but we both now have facial paralysis on our right sides, we've both had the gold implant eyelid surgery, we both have crooked smiles, and we both have bright outlooks for the future.

Her husband, Robert, said we should take a picture of us, while we still have similar features, so we could remember this time when we look alike. (As each of us improves with the paralysis, our faces change as our muscles move our mouths, eyes, etc. back to their proper places.) My face had already changed much from it's original post-surgery state, suggesting that some of the paralysis was from the swelling in the brain, not nerve damage. Jodi C.'s face has also changed a great deal, but now more than 18 months after her stroke, improvements come a little slower than they used to.



So, before we began our wonderful visit, we took this picture. Jodi is still an inspiration to me and one of the few people who can really understand how I feel and what I have gone through. There are some things people just can't really "get" unless they have experienced it themselves. So, here's to my hero, and inspiration, Jodi Carlson, who keeps going, day after day, setback after setback, with a little progress here and there, and keeps fighting the good fight. Love you, Jodi, you are amazing!

Also, thanks to my wonderful neighbor, Cindy, whose visit yesterday brightened my day. Her gift to me is one that I will never forget. Thank you, Cindy, for sharing something so wonderful and personal with me. You are yet another blessing in my life! :)

If you made it through this whole post...wow. Thanks and love to all.

"Lucky" to Be Alive, minor side effects & fireflies

Today was yet another doctor's appointment...but this time, it wasn't for me! We had to take Trenden in and I saw his doctor for the first time since before my big "adventure". When he saw me, he immediately asked what had happened, if maybe I had gotten Bells Palsy or something. When I told him a very brief version of the story, he looked right at me and said, "You're lucky to be alive!" I have been thinking about that all evening. I've decided he is wrong. I am not lucky, I am blessed...my life was always in God's hands and I am blessed to know that He allowed me to stay here to be with my family and loved ones. :) Thanks again for the many prayers that are still being offered for us, they are still making a difference each day.

I did find out a few things today that are minor side effects from all my surgeries and complications. While at the doctor for Trenden, the dermatologist told me that there is a 50/50 chance that I may lose my hair in the coming weeks and/or months, due to the trauma and stress my body has been through. (Anyone who has been pregnant/had a baby knows that this can happen on a small or large scale with body and hormonal changes, too.) I am not too worried about this, but if it does happen, I think I will use it as an opportunity to try out a few new hair styles (wigs). :)

Another side effect is one that has already happened. My skin has been breaking out in horrible acne "rashes" all over my face and neck. The doctor told me this is because of the damage to my nerves from the craniotomies, causing my body to "forget" how to regulate the production of hormones, oils, etc. Interesting. Had no idea the nerves would be related to this condition, I thought it was just stress. So, he gave me some things to try and said they can also do laser treatments that are effective in managing nerve-damage related skin issues. Good to know. Hopefully my "sample" products will help!

Tonight we did something totally "normal" as a family and went to Baskin Robbins and got ice cream, then went to Weber State and fed the ducks at the duck pond. My mom had never seen the campus, so we took a little time and walked around. I walked around the campus...such a "small" thing that is really not small at all. I am getting stronger every day and again, I realize that I am blessed for each "miracle" that happens in my life every day.

Friends and loved ones continue to show support and we are so grateful. A really fun "package" arrived in the mail over the weekend...it was a 2-liter bottle filled with fireflies! Tolan's sisters (Mindy and Lisa and their families) live in Indiana and are lucky enough to have these fun little bugs around. So, they decided they would share the joy and they sent some to us for the 4th of July. My kids were amazed and a few of the fireflie have even stuck around, as we saw one last night in the front yard. What a fun and creative way to share some fun!

My love and thanks to all for your continued support. :)

Independence Day

After a talk with my dad the other day, I've given a lot of thought to the word independence and the new meaning it suddenly has for me. How grateful I am for the indepedence of our country. I live by an Air Force base and I feel blessed and very patriotic every time I see (or hear) the F-16, F-22 or A-10 jets go by. I am grateful for the many blessings of living in this free country.

Now independence is also something I strive for personally...looking forward to that time when my body will be like my country, free and able to do what I want to do. :) I am getting better everyday, so I continue to hope and pray that my independence day will be soon.

I was blessed to feel well enough to go to church for a short time today. What a blessing to see so many beloved faces! I was totally worn out, but it was worth it. Afterall, I still feel like it is all of YOU, including my many friends at church who helped me get through these last few months. Thanks again.

So, Happy Independence Day (weekend) to everyone...let's all be grateful for our blessings and ALL the freedoms we enjoy, both big and small.

Tribute to a Caregiver -- Happy Birthday, Mom

Today is my mother's birthday. I have always loved her and admired her, and I've been lucky enough that we've always gotten along. But, now, more than ever I am so appreciative of ALL that she does. She truly amazes me. In the last 3 months, she has gone from being my mother and my kids' grandma, to being a live-in care-giver for me and second mom to my kids. When my dad and husband were at the hospital with me, she was at my house, cooking, cleaning and taking care of my family, because I couldn't.

It is hard to realize that I can't take care of my family and home the way I once could, but my mom has been absolutely wonderful in doing what needs to be done. She doesn't act like it is a burden, but that it is a priviledge to be able to do what she can to help. She helps me push myself, without "pushing" too hard or being too protective. She listens to me when I cry, complain and feel frustrated with myself. She cuddles my kids when they cry, cooks the meals, does the laundry, cleans the house, goes to the grocery store and generally runs everything...and I contribute a little here and there as I can. Yet, she praises me for each of my "little" accomplishments and allows me time to rest when I am tired from making my bed and dusting my room. How can I express thanks for all of this??? I can't, I've tried, but words are not sufficient.

The life of a caregiver is harder than that of those being cared for and I am soooo grateful for the "caregivers" in my life. My husband and mom are truly amazing.

So, Happy Birthday, Mom. I love you. I am grateful for you and all you have done for my family. Wish I could be with you today on your special day, but know that I will be with you in spirit!

Girls Camp, Picnics and Headaches

On Tuesday evening I had the chance to go visit the 12-18 year old girls from church that I work with at their week-long camp. Normally I would have been there with them all week, but I am just glad I got to visit with them at all. What a choice and wonderful experience this was! We shared so many wonderful, happy tears in seeing each other. In most cases, this was the first time I have seen the girls since leaving for the hospital in May. Some of them have come to visit me, so they were more prepared to see the "new" me.

I can only imagine what it must have been like for the girls to see me, my face half paralyzed, not walking well, my eye puffy and red... But regardless of what I must have looked like to them, they were truly amazing in their show of love to me! The hugs and tears are unforgettable. They also helped me at dinner time, as I attempted to eat without drooling or spilling my drink. They accepted me 100% and seemed honestly grateful I was there. What a blessing this was for me! If they only knew how much I love them!!


Visiting with Emilie and Lisa at Girls Camp!


"My" girls helping me walk around the campground. Without them I could have ended up in the firepit! I'll see if I can get more pics from other leaders. :)

Word spread quickly that I was visiting camp and before long, many good friends started appearing at the campsite (from neighboring sites where other wards were camping). Each of these little reunions brought me to tears and I tried to express my thanks for all the love and support these wonderful people have shown me. But how can I really say thank you for what all of YOU have done?? I simply can't. Just know you all have my unending love and gratitude.

Yesterday I pushed myself to see if I could make more progress. I made my kids lunch for the first time (it was only macaroni, but I did it!!). I also helped my mom clean Lindi's room and worked around the house a bit. As a reward for all our hard work, my mom packed us all a wonderful picnic and we went to Fort Buenaventura and had dinner in a great spot by the river. It was a super evening and I was so thankful to spend fun time with my family and mom. My mom is the most amazing woman...she packs a picnic better than anyone I've ever seen! We loved the time together in the woods!

We went on a drive in the mountains afterwards, which was also beautiful. It was challenging for me, as the altitude (I think it was the altitude that did it) caused me to have severe head pain. Since the surgery on my ear/brain, I haven't really experienced pressure changes, so it is hard to say if this was the real culprit. Still, it was worth it for the views and the company!

Today I have been suffering with headaches again. These are normal, both for the tumor, and for my recovery, but some days are tougher than others. I think I may have worn myself out a bit the last few days, so I am still working on finding that balance between pushing myself to progress and not over-doing it. I rested and took some painkiller this morning and am feeling a bit better now. I am so glad, since Janene Bennett is coming over to watch the kids so I can "take" my mom to lunch for her birthday (on the 3rd). She deserves far more than lunch, but it will be wonderful to spend a little time alone with her, just to celebrate!! LOVE YOU MOM!!

Enjoy some pictures from our family night out last night. Thanks to the Bennetts for all their help this week (and always!).


All of us enjoying our picnic!


My mom is sooo amazing! She does the best picnics and helps bring lots of smiles to little (and big) faces!


So many smiles. My mom especially loves picnics and being in the mountains (perhaps that's why I love it so much too!!