You can see how the spinal cord slowly starts to narrow at the bottom...it is supposed to appear skinny like that through the entire spine. Notice how much pressure was on mine. A miracle I hadn't any more symptoms. You cannot see the full size of the tumor and cyst in this picture but it give you a pretty good idea.
MRI from May 26, 2010
Day After Surgery
Black hole indicates where the tumor was. Doctor Dailey, based on this MRI, is confident they got it all. They also received Pathology reports back. It was an Ependymoma, a NON-CANCEROUS tumor. Blessings. He was, however, surprised to see something he had never seen before in this kind of tumor. He said that once they got in there they saw that my tumor had not only grown inside my spinal cord but had begun to grow out of my cord...bulging out, a little bit more cutting and manipulating my cord to get it out than if it had not. Another miracle that I wasn't having more symptoms.
X-RAY of Neck Hardware
May 26, 2010
This is the best picture we have of what the "plates" look like on the back of my neck where they removed and replaced my bone.
Kara was able to go to church today! They have a little chapel here on the second floor where they hold a sacrament meeting. Kara and I were able to attend the service, take the sacrament, sing hymns and listen to the talks. The service is only half an hour, so even our two year-old would have been able to last through the meeting. They have a little branch at the hospital with doctors and nurses making up the branch with their spouses and then patients and family can attend as well. If you are assigned to give a talk, you only have five minutes!
Before church this morning, physical therapy helped Kara get into a wheelchair. They worked with her moving from the bed to the wheelchair, and then we went down to the physical therapy gym and she did some therapy on the parallel bars. Kara was able to move herself down the hall in the wheelchair and with some help she was able to stand a few times while holding onto the parallel bars.
Kara was also able to get into her own clothes! Here in rehab you get dressed everyday and you don't wear hospital gowns, you wear your own clothes so that was another milestone today. After the rough day yesterday, Kara was able to sleep well last night and after physical therapy and church today she was worn out so she had another nap. She is looking good and slowing gaining strength.
The physical therapy here will be good for her progress even though it will be painful. She will receive 3-4 hours of physical therapy six days a week starting tomorrow. In therapy she will re-learn basic skills like getting dressed, cooking, standing, walking, etc.
We continue to pray that her feeling in her legs and feet will return so she can have full use of her legs and feet again. We are grateful for the many miracles so far and we are grateful for all of your thoughts and prayers; they make a difference.
Kara loves visitors, so if any of you happen to be in the area or are able to make it down to Salt Lake, she would love to see you. She also checks her phone for texts and the computer for emails and comments on the blog, so if you cannot see her in person, send her a message and she will respond as she is able to do so.
We love you all and appreciate all your love and support!
Today has been one of those down more than up days. Some pretty hard things happened, but I'll spare details until later when I"m feeling more up to it. Just please keep praying for feeling and the ability to use my lower body. Pray that my discouragement will be infused by hope.
I guess it's normal though now that I know what I am really up against. A crazy physical battle. Many have conquered before.
I'm not trying to be a total downer though so....The 3 highlights of a really hard depressing day were!
(1) My brother Ben bought me a webcam and hooked me up to Skype so I got to talk to Emily and Andrew live! Thanks for such an awesome gift Beener! I love you! Drive safely! (Love you too Erin! Thanks for your visits and smiles and flowers!)
Saying goodbye to Levi for a while.
(2) A very surprise visit from my dear sweet friend and "sister" Kathy Johnson from Idaho Falls.
(3) a LOVELY bouquet of flowers, happy balloons and treats from my Brother and Sister-in law and family.
I was also visited by Brian's Sister Kandis and her family! They brought me THE YUMMIEST Greek Gyro and we had such a great visit. I loved hugging and chit chatting with my niece Raygan! Love you guys!
Brian's parents also came down and shared some wonderful time with us and his Grandma Hansen! I received another blessing from Brian and his Dad...so thankful.
So...I'll continue to count my blessings and pray like crazy.
Good morning! After a good night sleep and some good news this morning I feel like blogging a bit!
Hasn't my sweet husband done a great job keeping this up for ? I love hm so much for it.
I am having to type one fingered because my right hand isn't quite that coordinated yet. But it is gaining strength. In fact I am really happy that my upper body, belly button up, is mostly normal and capable. I anticipate nothing but full use and recovery there and probably very quickly.
My lower body is another story. I have great motion and muscle use (so they tell me!). GOOD! I have discovered, however that being able to move my legs is great, but, when you can't feel what or how you're moving them it makes the process of doing anything on you own impossible. I have had two Physical Therapy visits. Each difficult and each painful and somewhat scary. When they do eventually get me up on my feet they have harness around my waist and attached to them and then they lift me up. They tell me I am using my muscles to hold me up but I can't feel that and I certainly don't feel like my feet are on the ground. I feel like I am literally floating in mid-air and upright. It is by far the weirdest thing I've ever felt. The 1st time they got me up my blood pressure dropped and I almost passed out. The other times I have been able to not feel that so much. When they sit me on the side of the bed before standing I can hold myself there...can't feel my rear but can hold myself anyway with someone spotting me close by. I have a bright yellow arm band that says "fall risk" on so everyone knows...HA!...I'm pretty sure they'll figure it out or I'll tell them before they get too far! So. Sometimes I feel nervous that it may not all return and that I am going to be a numb walker forever...but I am grateful for time and hope and the many priesthood blessings and prayers that give me confidence!
This weekend, upon quick enough insurance pre-approval, they will move me one floor down to in-patient rehabilitation where is will stay until they are confident i can be at home...with help from family. It could b e few days to a few weeks. It will all just depend. There I get 3 hours of PT a day on their different equipment and it's broken down into sessions so not too much at a time. My neuro doctors are all close by here too for help and they are well staffed with all of their doctors too. I am really hoping a private rehab room though...I heard there were some shared ones. I feel very uncomfortable about that. I will get to wear normal clothes...if we can get them on! I am still cathetered and bed panned (kind of humiliating!) Upon returning home I may still need a walker, chair or cain for a while...but it's all just time. I think it would have been much harder to wake up with less use of my upper than my lower body....I am so gratefully counting my blessings!
We had a good quick visit from one of the Resident doctors early this morning - he was in on the surgery. He said the xrays of the hardware in my neck look great and that the MRI looks good too! TUMOR is ALL GONE! No results from pathology yet. I've asked to see those pictures though ...I'd like my own before and after pictures to keep.
They also removed my bandage and the incision is very nice looking. They didn't have to shave any of my hair! WOO HOO! The haircut worked and, yes...I am being a little bit vain...wondering how I look!
I fully plan on running a marathon in a year! Better yet...playing soccer in the back yard with my babies!
I have been able to kiss and play with Levi a bit! So wonderful! Too much hospital time is hard on a baby. I'll be sad when he leaves for a time and can't come smile at me everyday. He brings me a lot of joy!
I have spoken to Emily and Andrew twice since surgery and it's been great and bitter sweet. The 1st time Andrew heard my voice he immediately started to cry and say, "Mommy, I want to come home." That was hard and broke my heart. He snapped out of it though, hugged his "Mommy hugs and kisses puppy" and went on to tell me the fun things they've been doing. They have been sending me a lot of picture texts of the kids throughout the days and I can see their cute faces each moment I request!
These first pictures are the night of the surgery when we first came in to see her once surgery was over. As you can see from the picture, she can move her hands! The left hand she could raise up and the right hand she could move, but not lift very high.
She was hooked up to a lot of monitoring equipment, but still able to smile. She really wanted me to take a picture and show it to her so she could she how she looked!
A Visit from WA friends!
We are now on day three and Kara is improving. She was able to get some sleep last night and she is gaining mobility in her right arm. She still does not have any feeling from the waist down, but we are confident that feeling will return with time. She can lift her left leg, but cannot really lift her right leg, but she can wiggle her toes. So we are hoping the right leg will continue to improve and gain mobility.
We are waiting for the physical therapy today and for the doctors to come in and give us an update as well. So we will try to give another update today. Thank you for all your thoughts and prayers. We are grateful for the many miracles and pray that Kara will continue to recover well.
Kara looks great this morning. She had a rough night with not much sleep and a lot of interruptions including what she called a Grey's Anatomy experience with a doctor and a bunch of students checking her over, but she is doing well. She was able to eat some breakfast this morning, and Dr. Dailey the neurosurgeon came in and talked with her and answered all of her questions about surgery. Mike, her brother, stayed the night, for which I was grateful so I could tend to Levi at the condo.
The actual tumor that they took out was about marble size in diameter and about an inch and a half in length, larger than we originally thought. The tumor is believed to be ependamoma (not sure on the spelling) and Dr. Daileybelieves that they were able to extract all of the tumor. We will know for sure in a few days once the results come back from pathology.
This morning the physical therapy group came in and helped Kara sit-up and then stand on her feet! She can move her feet, but as of right now, she does not have any feeling in her feet so when she stood up, she got a little woozy and had to sit back down. Considering surgery was less than 24 hours ago, that is still amazing she can stand even though her legs and feet are numb. She said she cannot feel anything from about the waist down and her right side (the side the tumor was on ) is the weakest, which is what the doctor told us a few weeks ago would happen after surgery. So we are counting are blessings and hoping and praying that the feeling will return to her lower body in the next few days as she recovers.
She is now getting X-rays so they can look at the hardware they put in during surgery and she will have an MRI later today so they can look and make sure they got all of the tumor out. She will also be moving to the Neuro Acute Care Unit this afternoon, which is a step-down from the Neuro Critical Care Unit, but still an intensive care unit. Once she moves the the Nuero Acute Care Unit, she will be able to see Levi and receive flowers, so she is excited for that!
She will probably be in the Neuro Acute Care Unit for another day or two and then move to a normal hospital room. By tomorrow, she should be ready for a few visitors other than immediate family if all continues to go well.
We appreciate everyone's love, prayers and concern. Hopefully this at least gives you an update on what is going on. Sorry for the late update last night, surgery went longer than expected and we were just waiting to hear from the doctors and see Kara, and it was well worth the wait.
Briefly, just to update everyone. The surgery is over and the surgeon said everything went really well. He was very positive that he got all of the tumor out and Kara responded well to the surgery. Once surgery was over, she was able to wiggle her fingers and toes just like she wanted too! We know this is a great miracle and we are so grateful for all of the prayers and fasting in Kara's behalf. We know they were heard and we know angels were and are watching over her for which we are so grateful. Surgery ended about 7:45 and we saw the surgeon about 8:15 p.m. and finally got to see Kara about 9:10 p.m.
She is in the Neuro Critical Care Unit and Michael her brother is staying the night with her tonight. She is in a lot of pain, but she can move and wiggle her feet, and move her arms. When we talked with her she was awake and alert and doing well other than the pain and soreness for surgery.
Thank you to all for all of your prayers and faith. We are not out of the woods, but we feel exceptionally blessed to have the miracle surgery behind us and on to recovery.
We love you all and will update tomorrow when we have more time.
One other update we received from the nurse who just came out after a shift change, they have located the tumor and they are in the process of taking it out. Kara is doing well and surgery is progressing well without any unexpected problems. The nurse told us that after surgery she will go to the Neurosurgical Critical Care Unit for a day or two to monitor her before she gets moved to a normal hospital room.
We should have another update in a few hours and maybe surgery will be done by 8:00 p.m. or so. We are counting our blessings!
Just a short update to let everyone know how things are progressing. We arrived at the hospital this morning about 11:40 and after a few minutes of waiting, Kara was called back to get ready for surgery. She thought she was going to have to say goodbye to everyone then and she was not quite ready. However, the nurse let a few people back into the room with her, including Levi, which was great and we just rotated in and out. Levi was the distraction for the next hour or two while we waited for surgery.
Once Kara got dressed in her gown, the nurse came in and gave us a brief overview of what was to happen. Then the doctor in charge of the nerve monitoring came and and explained how he would moniter her nerves. Levi laughed and played the whole time keeping the atmosphere in the room positive and uplifting. We waited for another hour and then had the nurse, the resident, the neurosurgeon, and the anesthesia doctors in and out explaining their portions of the surgery and allowing us to ask any questions. It was really nice to visit with each of them and talk with the neurosurgeon for a few minutes. They were all really positive and confident about the procedure.
Then it was time to say good-bye. We gave her hugs and shed a few tears and walked out while anesthesia gave her some medicine to help with the anxiety. Kara has been positive and we assured her that everything would be fine. Kara and I got to say a prayer together while we were waiting and she got some good time with Levi before he had to leave.
We left about 2:15 p.m. and they were taking her to the operating room after we left. The nurse said it would take about an hour to get her ready for the actual procedure and the surgery would be four to five hours. The surgeon assured us he would take his time and and take everything slow. It will probably be after 7:00 p.m. before she is out of surgery and she will spend the night in ICU according to the doctors and three days in the hospital before being moved to recovery.
The last update was that they had done the incision and she was doing just fine with the anesthesia. So we are grateful for the many miracles that have and will take place.
Thank you for all your prayers and support. We are grateful for every one of them.
We all woke up and enjoyed a calm morning. It was pouring down rain and snow this morning but Mom and I still put our rain jackets on and went for a nice walk. The rain didn't bother me...I loved it!
We went out for an early lunch before my Pre Op appointment and I got to visit Gateway mall for the 1st time. I have wanted to just walk around and see it and we did! No shopping...but we did stumble onto TUCANOS for lunch! Woo Hoo! One of my favorite places ever and I haven't eaten there in years (Lindsey & Chelsea!). Most of my family had never eaten there and it was a fun and really yummy Brazilian experience!
The Pre Op was fine. Brian already explained the details. Not too exciting. I was however happy to have a later surgery time. We'll have a calm morning...not rushed.
After the Pre Op I got to go to another 1st! We went to IKEA! I have heard so much about IKEA and my brother's wanted to go so we did! WOW! What a wonderland! I found some great ideas for the basement and truly enjoyed being amazed by how much they have and their good prices! A good distraction!
A good friend of mine brought my family a cooler full of food for the hospital waiting room - a survival kit! Thank you so much Jill! Love you!
Soon it was time to eat again! We ordered take out from PF Changs! (Yes, they are spoiling me!) The food, of course, was delicious ... but here is the best part!
MY FORTUNE COOKIE SAID!
"TOMORROW WILL BE LUCKY AND MEMORABLE FOR YOU!"
Well "MEMORABLE" - I knew it would be...but "LUCKY" is perfect! HOW FUN!
Brian laughed and said..."It's a good thing I didn't throw you the one I got!" Brian's fortune cookie said..."An alien of some sort will be appearing to you shortly!" HA! No joke! Has anyone ever had such an odd fortune cookie?
Anyway! I'll take my fortune!
I also got to watch the Finals for "Dancing with the Stars" much to the men's dismay of Brian, Dad and my brothers! I will be counting on someone letting me know who won!...(I've been cheering for Evan since Day 1!)
I am calm. I am okay. Tomorrow will come and go. As nervous as I am I feel like I have no other option than to just be brave, walk in, and do it. Putting it into the hands of the Lord...and the doctor too!
Thank you for your prayers, love and service. I don't feel alone.
Goodnight - I am tired! I am officially turning the blog over to Brian now. He will be posting surgery updates tomorrow and letting everyone know of my progress and when I am ready for phone calls, visits, etc...
Kara had her pre-operation visit today at 2:00 p.m. They took some blood, had her sign some papers, and she talked with those in charge of anesthesia. Surgery is scheduled for tomorrow, May 25th between 12:30 p.m. and 1:30 p.m. We have to be at the hospital at 11:30 a.m.
We appreciate all of your thoughts, prayers, and fasting. It has made a world of difference for our family, along with so many kind acts of service. We are hoping and praying for the best outcome possible and we are confident that everything will go well.
We will try to keep you updated as we get more information. Thank you for all of your love and support!
Saying goodbye to Emily and Andrew was just as hard as I thought. I tried not to cry in front of them. Andrew said, "I love you Mommy and I don't want you to go." Emily started to cry. I gave their puppies extra hugs and kisses and that was that.
I am here in Salt Lake surrounded by my family, Mom, Dad, Brothers, Brian and my baby Levi. It's so good to be with them. I am so grateful for all of the support.
Thanks for all of the prayers and messages! We'll let you know tomorrow what time surgery is scheduled for on Tuesday.
Here are some more jokes for you! Courtesy of the wonderful Lincoln 5th Ward girls!
Q: "When you mix a rat with a bee what are their children called?"
"Cow's don't Hoo. Cow's Moo!"
(LOVE THIS JOKE! I have always been a fan of cow jokes!)
I have been joking about this from the beginning, but I am now seriously considering doing this. I have said that I was going to get a picture of my 3 kids and put in on my forehead and my back so during surgery the doctors and people would KNOW that they were working on a mother of 3 little kids and that she needed to get back to them WHOLE.
So, here's my real idea. I am thinking of getting a permanent marker and writing across the top of my shoulders...
"Emily Eden 5 yrs, Andrew Paul 2 yrs and Levi David 5 mos"
Okay, so I am laughing even just thinking about how crazy that sounds...but REALLY...I want them to know that I am a MOMMY of 3 beautiful babies while they're in there!
Well, the night that I have been planning on came. The night when we would tell the kids what has been going on. They had already figured out some things, but we sat down and explained it to them. It was really very nice actually.
We called it a Family Home Evening and Brian's parent's came down from Victor to be here with us. We started with a song and a prayer and that always calms the atmosphere and invites a peaceful feeling. I gave the "lesson." We talked about when I went to the hospital to have Levi and told them I would be going to back to the hospital. We told them that this time the doctors were going to help me get better because I was sick and that I would be gone for a much longer time. They didn't really seem to phased, which I figured would happen (they're only 5 and 2). I wasn't expecting tears and "No, Mommy...Don't GO"s! They were excited that they would be spending a lot of time with Grandmas and Grandpas and Aunts and Uncles! They squealed in excitement over that! I told them that when they said their prayers each night they needed to ask a special prayer for Mommy to recover quickly and a prayer for Mommy's doctors too. Emily asked a lot of questions, like "are you going to get shots?" etc... She was curious, but I didn't really want to go into too much detail. They just know that Mommy's going to be in the hospital for a long time.
Brian and his father then gave each of the children a Father's Blessing. They were beautiful, peaceful prayers through the hands of two of the most wonderful, faithful, Priesthood holders I know.
After the blessings I pulled out two extremely soft and cute stuffed puppy dogs! Pink for Emily and Brown for Andrew! I told them that they were their "Mommy Hugs and Kisses Puppies!" and before I let them have them I made them watch me LOAD those dogs with "MILLIONS and TRILLIONS of HUGS and KISSES!" They were each SO CUTE and SO EXCITED to get their puppies in their arms! They carried them around all night and they're in bed with them now! They understand that when they need hugs and kisses from Mommy that the puppies are loaded to the gills and they carry an unlimited supply of Mommy's kisses and hugs! (Brian and Grandma and Grandpa got to load them with kisses and hugs too...so they are super ready for the job!)
Emily and Andrew went down to watch a movie and I then received a blessing from Brian and his father. I am so grateful for the power of the Priesthood. I am so grateful for it in my home. I am so grateful to KNOW that it is real. Brian also received a tender Father's Blessing.
It has been a good day and a wonderful night.
The kids fell asleep watching their movie and Brian carried them upstairs. As I came to their bedroom to say goodnight, my emotions already high, I just fell on top of Andrew's sweet, soft, forehead with teary kisses and couldn't stop. I eventually had to wedge my big old body up beside him and just lay there for a while hugging him. Don't get me wrong, I know that I am going to get to be with them again, but it's still so very emotional for me to say goodbye to them. They will be my complete motivation in getting back to 100%. I just want to know that I will be holding them with my own two arms and on my own two feet. It would also help to know just how soon that will happen!
I went to a Day Spa today for the 1st time in my life! A Mother's Day gift from my husband! A few friends and I treated ourselves...the ironic thing is that we've had this planned for several weeks and it turned out to be perfect timing! A wonderful couple of hours with wonderful friends and a Peppermint Pedicure in a lovely massaging chair!
(Please ignore my veiny feet...just focus on the happy bright red toes!)
I finished my MOTIVATIONAL COLLAGE to take down with me! These are the faces that will give me the most strength and motivation. Soon I'll be able to hold them just as I am in these pictures!
I gave the Doctors a little help, since I'll be mostly shaved in the back anyway for surgery I thought I'd give them even less hair to get in the way. This will also speed up the "growing back in" phase of my up and coming hair do!
I received a wonderful gift from the Lincoln 5th Ward (my old ward) Activity Days Girls (8-11 year old girls) today. They made me a really darling paper flower bouquet, cookies and a whole stack of new jokes! So fun! So here are some of their jokes! They'll last me a while! WOO HOO! Thank you sweet girls (and your leaders!) for your service! Love you!
"What did the bug say when someone knocked on his door?"
"Don't bug me!"
"What is the difference between a train and a teacher?"
"A teacher says spit out your gum and a train says CHEW CHEW!"
"I don't know,"
"I don't know who?"
"I don't know what to say!" ( LOVE IT!)
And there's a lot more where that come from! Thanks again girls!
It's been an exhausting 2 days, I have run around more than I probably should trying to take care of things. Now........for some reason, Benadryl and all, I can't sleep. My left arm and leg are both aching and numb and that definitely doesn't help when I want to sleep. So, I'll blog a bit!
Today we said goodbye to my sweet Jane...
Right now she is on a plane somewhere between Salt Lake City and Paris, France. She'll be arriving in Berlin sometime in the morning. She has been such a blessing in our home, I loved being her "mom," I love her like a daughter and I think I always will. As we were driving around town today running a few last minute errands before she left she looked at me and said, "I feel weird, I don't feel anything." My only response was..."I know how you feel." In so many ways I know how she feels. She was happy to be going home, but so sad at the same time. I believe our spirits cope with that kind of feeling by just going numb for a time - I've been emotionally numb a lot lately. I hadn't really let myself cry a lot over her leaving - couldn't until today. I had to hug her every time I could and continually brush off the tears. The emotions fell at the airport - when I did finally have to say goodbye. I still can't believe she's gone. Tonight was strange not having her come up to fill her water bottle before bed or sit by me on the couch to just because or talk for a minute or two. Andrew was not sure what to make of her leaving, I don't think he gets it's yet. Emily, on the other hand did, and she stood hugged my leg and cried for several minutes after watching Jane disappear at the top of the stairs in the airport.
I love you and miss you Jane - please remember the life lessons you've learned here and remember that we'll always be praying for your happiness and success in life. You are a good girl, you've grown up so much these last 10 months and you have a amazing potential to bless the lives of many people in many good ways. You are forever part of our family.
My Emily graduated from Preschool today!...
Okay, so I have to admit that when I found out there was going to be a "Preschool Graduation" I thought it was a bit unnecessary. It's just "preschool!" However, when I was diagnosed with the spinal cord tumor and thought that I might miss my sweet Emily's Preschool Graduation I cried and felt so much pain - once again "life redefined." Now, the little "silly" thing became SO important to me - I couldn't bare the thought of missing it. To be there to support my sweet baby and see her proud face and hear all that she has learned meant more to me today than I could have imagined. I love you so much Emily, I am so proud of you! You are a loving, beautiful, smart, kind and amazing little girl. I hope I can be the Mommy you deserve! I am so happy that your teachers had a Graduation for you tonight! Thanks Holly and Misty - you made me eat my words!
In other news today....
I spoke with Dr. Dailey's nurse on the phone today. She reported back to me that after having met with the other neurosurgeons in Dr. Dailey's group of 6 there at the hospital they all agreed with his original approach to my surgery. They will be entering through the back of my neck and removing the "bridge" of my C5, C6 & C7 vertebrae. That will then give them the "window" to my spinal cord and then, hopefully, the tumor. They will replace the bone of my vertebrae that they remove and re-attach them with some type of plates on either end. They will biopsy the tumor right away. They do not anticipate me needing any time in the ICU after surgery so they plan to move me to the Neuroscience 3rd floor immediately after. That is where I will most likely stay for the remainder of my 1st week. After surgery the rehabilitation team will assess me and then a decision will be made as to my in-patient rehabilitation location and plan. There are still so many unknowns.
We are trying our best to prepare everything else, home and family wise, in the meantime. I have a large list of things I would like to do before I leave and now...my "long wait" seems like it's over. I have 3 more days and then we head to Utah.
Anyone want to run away to Jamaica with me instead?
- I have decided to get a short haircut because they will be shaving the better part of the back of my head anyway. I don't have long enough hair right now to dream of covering it up with something from the top, so it's getting chopped tomorrow - I'm thinking "pixie"! This way the shaved stuff will catch up to the style faster!
-Brian and I are going to record ourselves reading "bedtime" stories to Emily and Andrew and put them on a CD for them to have for bedtime each night when we're away. I don't know if this will comfort them or make them more sad, but either way, they will have it and our family who's caring for them can determine if it helps or hurts.
- I am also going to be getting them each a teddy bear and load it with millions of Mommy "hugs and kisses" so that they can get their "hugs and kisses" throughout the days.
-On and On...lots to do!
We have continued to receive many kind acts of service, prayer and love and so yet again I need to say
As for my book hunt...I have received the books I asked for! I'll have plenty of good reading to do, I just hope I actually get to!
on a more Spiritual note...
This has already been an amazing journey, Spiritually speaking. As I admitted earlier, I have felt a lot of emotional, mental and spiritual numbness (I think that is just a survival skill) to get through each day. But, when the walls of numbness break down and I start feeling despair, pain and fear...I have felt Heaven and Earth collide. I have felt the arms of a Loving Heavenly Father wrap me and comfort me and I have heard His message to me. He has made it very clear to me, on more that one very specific occasion, that He is here with me and He knows the desires of my heart.
Many of you have suggested that you will be fasting the day of surgery...thank you. I know there have already been many of you who have fasted for me...thank you. Words cannot express how overwhelming it has been to feel so much love. I feel so very unworthy and inadequate. Knowing of your fasting and prayers on this day will bring me the greatest amount of comfort and security as I enter that room. I know it works, I just know it. I know that because of the fasting, prayers and faith given by so many that the Doctor's hands will be guided and led moved in only the best ways.
To my husband...
I am going to "publicly" tell you all that I have an amazing husband and I love him so much.
Brian, thank you for loving me so much and for putting up with my many, many faults and my continual craziness - I know I am not easy to be married to. I am so grateful that you are mine and that for some reason you love me as much as you do. I am trying to be the best wife for you and mother for our children. I know that this experience is part of the "refiners fire" for our life ahead and I am looking forward to becoming more and more polished through our forever journey of ups and downs together.
Please keep Brian, my children and others in my family in your thoughts and prayers just as much as me, if not more. They will be carrying all different types of burdens, sadness and difficulties these next few weeks and I feel so bad for being the cause of it. Brian, especially, will have a heavy load to bare.
I am so happy to be able to recognize the perfect moments throughout all of this, many things in my life now seem so much sweeter. This morning is a perfect moment! The sun is shining and beautiful! Brian got out for an early morning run and I have had time to sit by my window with the sun shining in to read my scriptures in a beautiful peaceful moment (felt awesome to read the words found in Mosiah 27:14-15;22-23)!
Drum Roll Please!.................................................................. ...
SLEPT THROUGH THE NIGHT!
His new diet of formula and oatmeal right before bed has made a huge difference! This will make tending him a lot less tiring for everyone! Just 2 weeks ago he was waking up still 4 times a night, I was going to nip it in the bud soon but hadn't done it yet.
Yesterday Andrew fell asleep while eating his afternoon snack! Another perfect moment!
Emily and Andrew smiling, hugging with messy chocolate faces! Another perfect moment!
Here's an Idaho Potato Joke from my Oregon friend!
"Why wouldn't the reporter leave the mashed potatoes alone? "
I have a lot thoughts running around my brain right now and I thought I would take some time to share.
1st - I wanted to let you all know that because of our new situation and circumstances Jane - our lovely German exchange student has decided to leave us earlier than anticipated. She was going to be heading home to Germany on June 8th after her full year with us. Because of everything going on here she has opted now to go home this Wednesday, the 19th of May. Her flight leaves Idaho Falls at about 3 p.m. This is a hard thing to handle all together. I feel guilty and sad that she is leaving early because of me. I was so looking forward to spending these last few weeks with her doing things that we hadn't yet been able to do. I was looking forward to running a few community races with her and playing outside in the sun with her and the kids - now that the sun is finally here. Jane is such a good girl, I have had so much fun being her "mom" for a year. I have watched her grow in so many ways and I regret now that I am so emotionally spent that I have little left to give as I say goodbye to her on Wednesday. She is happy and sad to be leaving, she has a positive attitude and I don't think she is leaving with any regrets. We will miss her and I am sure when all is said and done in several months I will turn around and wish she was still here. Any of you who know her and would like to stop by to say goodbye and wish her luck I am sure she would be so happy to see you. She wanted to say goodbye to everyone at church today but it turned out to be Stake Conference. I love my Jane and I will miss her.
2nd - While our life has been changed quite dramatically over the last few days I am always aware that there are still others struggling even more. I have a dear friend, "another mother" of mine - if you will - who is currently in the ICU in a Utah hospital and has been struggling for the past several nights. Last night was especially scary. My prayers and thoughts are continually with you. I love you Vickey, I love you Andrea and family and you are in my thoughts and prayers continually. Hang in there, you are one of the "rock examples" that is helping me find the faith to get through my own trial.
3rd- Today we were at Stake Conference and I found myself in an utter fog. Many of you asked me how I was doing, what I was feeling and offered your love and service - Thank You! I left feeling like I didn't know what to say to anyone and that I hadn't said enough. I apologize if I felt unpersonable or "out to lunch."
The past 11 days have been so full of ups, downs and all-arounds that I guess I am just numb to my senses emotionally. Physically and emotionally I struggle off and on throughout the day, but mostly I am just "here." I realize that the physical struggles I have now in caring for myself and my family are not near what they may be when on my road to recovery after surgery. That is hard for me understand - physically, today I am "mostly" okay and I keep asking myself how I am going to through this surgery and have the strength to get back to "mostly" okay. The uncertain outcome of the surgery also has me a bit worried - (1) what is the tumor? (2) what permanent damage, if any, will my spinal cord sustain? I try to keep positive and for the most part I believe that all will be okay, but it's kind of hard not to at least think about it.
I am learning that I DO NOT LIKE the idea of letting go of my family at all - it's so hard for me. It is my nature to want to make sure EVERY little detail is planned out while I am gone and that everything will go as I have arranged. It's too much for everyone to handle. I have been putting too much pressure on my dear extended family, I am sorry. I know they will be in good, loving hands while I am gone!
I have 3 beautiful, wonderful and amazing reasons to motivate me to get through recovery as quickly and perfectly as possible. They ARE my life and my work and my joy!
I have an amazing husband by my side who loves me unconditionally. He has a huge burden to bear and I worry about him. I look forward to getting back to him quickly and continuing the rest of our journey together!
What I know is that there have been so many blessings from this experience already. The life lessons I have felt and learned in the quiet moments will be with me forever and I pray that I will be a good student!
We just wanted to thank everyone for all of their service, love and support. We have been overwhelmed by the acts of service, the cards, phone calls, visits, and the prayers that we have received over the last ten days. We are truly grateful to have so many friends and we want you all to know how much you have helped us as a family during this difficult time.
Today we are enjoying the beautiful weather and some precious time with our children. Kara is teaching me how to post so we can update you while she is in recovery. The entries may be short and sweet, but hopefully you will at least know what is going on.
We are grateful for all your love and support. You truly have showed us Christlike love!
Our situations are very different, nevertheless, my friend brought this to my attention. I am grateful for the example and strength of this great woman who loves being a Mommy too - despite her trials!
We received the phone call we've been waiting for.
Tuesday, May 25th is our date for surgery.
This is hard for me to swallow right now. I am not exactly pleased, but it is what it is. There is good and there is bad but either way I have to now just get my head around being here and trying to maintain normalcy for my kids while continuing to work through the physical, emotional and mental fatigue.
For some it may not seem like 12 days is a lot, but the past 7 have been so long since diagnosis and days up to diagnosis were long and scary too. Sorry, I am just venting.
My mom will be heading back to Washington tomorrow. We have no way of knowing just how long I will need her here post-op and it's only right that she gets a little bit more time home, at work and with her husband, until then.
During the expected 3 week duration of my recovery and rehabilitation there will always be someone from my family in the Salt Lake area. We are looking for a condo or apartment to rent that is furnished and as close to the hospital as we can get.
If any of you have any ideas we would be so grateful to find somewhere for them to have as a hub to come and go from throughout the next weeks. Two bedrooms would be nice and we will work out payment arrangements.
Monday morning we met with Dr. Dailey for my consultation. Yesterday was another whirlwind day and we are all trying to gather ourselves and catch our breath - sorry, I didn't post this sooner.
We are back in Idaho Falls for now. Today (Tuesday) or tomorrow we will hear from Dr. Dailey's office with an operation date. He is going to be clearing his schedule for a time next week for my procedure.
Here are the facts:
The procedure should take anywhere from 4-6 hours, but he said he's going to take 8 if he needs it. They won't know until they get in there.
They expect I will be in SLC for at least 3 weeks if everything goes well. 1 week at the hospital post surgery and 2 weeks in an in-house rehabilitation.
There is a 20% chance of some type of permanent damage to my nervous system, from slight numbness in a part of my body for the rest of my life to lack of movement of something to total paralysis (he did say that paralysis is "not an option" though). 20% is a number I can deal with. 80% is much better odds!
Their technologies have improved so much over the years that they can monitor every single one of my nerve endings through the procedures and their systems will tell them when to stop and when to go according to how my nerves are reacting.
These types of tumors are very rare in the neck. In the United States they see about 200 a year and this doctor here says he gets about 10 of them. Still, pretty good numbers.
There is some good news. While my tumor was originally expected to be all tumor with a little bit of fluid, the Dr believes it is not the case. My C3-C7 Vertebrae are still affected but it is a combination of tumor and a cyst that has formed around the tumor and is filled with spinal fluid that has been trapped there. This means they will not have to open up as many of my vertebrae, only 2 or 3 and then once the tumor is out they will make sure the cyst drains completely too.
My mom came home with us for now and will be here until we figure out the surgery date and plans from here forward. She may go home for a short time if the surgery is prolonged into the later part of next week. For now the Dr said I could take Benadryl to help me sleep and he gave me some pain meds.
Right now we are focusing on the kids and hoping that I will be able to spend some good quality (feeling good) time with them over the next few days to come.
Thank you for your thoughts, prayers and fasting. I have felt so much love and while at times it feels dark and scary I have had moments of pure peace where I have felt the overwhelming comfort of the prayers and angels sent in my behalf. Love to you all!
Okay, so reality struck as I said goodbye to Emily and Andrew this afternoon. I go from numb to nervous. The drive down wasn't as painful and long as I had feared. A Blessing. I did however have a little bit more of a breakdown than I had previously had. It comes and goes, I expect it to be somewhat normal. Tomorrow will answer a lot of questions and we will fill you all in as soon as we can.
We arrived just after my mom did and giving her that hug on Mother's day was sweet! I only wish it wasn't for this. It seems, however, that there are SO many blessings disguised into this trial. I am glad to be able to have the tender mercies!
I am so grateful to be a Mommy! This for me has been one of the most tender parts of this experience. I have 3 beautiful and amazing children who are quietly and not so quietly all struggling in their own way as they sense the intensity of what has been happening here the last few days. I am going to HATE leaving Emily and Andrew today but there is no sense in bringing them to SLC for this consultation. Levi will be coming with us and if we end up staying through surgery I will be having someone bring Emily and Andrew to me before I go in. The road between Idaho Falls and Salt Lake City will be well traveled by our family over these next days and weeks.
I will, however, be blessed to hug my own Mom today when we pick her up at the airport in Salt Lake tonight. She will be here with us indefinitely.
Motherhood is such a blessing no matter which way you look at it, as a mother and as a child I am so blessed and so humbled to be given so much.
I just wanted to take make sure that you all knew how much your phone calls, visits, comments, thoughts and prayers mean to my family and I. Sorry if I have not replied to or called all of you back. I want to but time is so stretched. Please keep calling or stopping in, if we can talk we would love to for sure!
It has been a whirlwind. We only found out on Thursday and here we are packing to go to SLC and we have no idea what will happen from here. Actually, it's 6:30 a.m. and I haven't started packing...I think I'm trying to avoid it in my own sort of denial.
You have all helped so much, we have found strength, courage and faith in talking and crying through it will many of you. Thank you!
Some nights are better than others and last night ranked fairly poorly.
For the past few nights sleeping on my back seemed to be the best position for comfort and good sleep. Last night I was up for hours feeling what felt like my entire body falling asleep. It kept me up a lot. I finally listened to the promptings that I had received a few times and turned to my side (a position that had previously really hurt). As soon as I turned to one side I got the feeling back in most places. Phew! I guess I was putting too much pressure on my neck or something. It's weird trying to figure it all out.
Levi likes to eat every 2 1/2 hours. Even though he is now a 100% formula fed baby, Brian and I are trying to help each other by taking turns. I don't mind being up with the kids...it brings me comfort to know that I can be. We are not bottle experts so we are not as quick as Levi would like us to be and it's hard on him.
Andrew's little cough got him up just after I laid back in bed after Levi's 4 a.m. feeding. I got up with him for 45 minutes to read him stories while he did a breathing treatment. Once again, I totally don't mind. These moments are the ones I am cherishing most right now.
After my time with Andrew, I noticed the sun beginning to rise, I got back in bed with my heating pad on my legs and laid there, fairly comfortable, but awake. My thoughts led to prayer and pleading for several tender minutes.
The sun is up now and I'm feeling pretty good. Brian and I have plans to go to the Idaho Falls Temple this morning for a couple hours. I need to be there with him. He is being so loving and great and strong. At times I look at him, however, and I see it in his face, the overwhelming weight that he is trying to bare right now...keeping his kids happy and playing with them (like nothing has changed), the house duties that I can't do, his work, having time with me, having time to rest and sleep. Please pray for Brian, our kids and the rest of our family too...
Our life has definitely been "Redefined." Strange how things can change so much and so quickly.
I have a dear friend (co-worker with the exchange student program) who suggested that while she didn't know what she could to for me she could be a good listener and she could certainly share a few good "Knock Knock" Jokes. So, I put her in charge of the daily joke - it is so important to enjoy the journey how we can...(feel free to send me your jokes and I'll add them as we go!
Up until this point I have just tried to explain things in as much detail as possible so that everyone can grasp how it happened and what exactly it is.
Even though we have not yet met with the Dr for the consultation I am not naive to the risks involved. There have been many tears and yes, this is scary. My whole family is kind of reeling with what to do and how to be together, how to make sure the kids are well taken care of and how to ensure that their world doesn't feel totally blown away. We still have A LOT of unanswered questions and many more decisions to make.
Everyone has told me they can come and take my kids to give me some time, but my only thought is that I want to be with my kids. I really want to be with my kids and my family. I don't want to be alone, I go through my little spells and I feel so crazy and while we believe the tumor has been growing for a really long time these symptoms have come on very fast and I don't trust myself alone with my babies right now.
There have been moments of fear, moments of pain, moments of anxiety, moments of anguish, moments of calmness, moments of comfort, moments of laughter and moments of peace. It is what it is. Our Life is Redefined.
I keep thinking about the long list of things I should be doing right now. I am a 29 year old wife and mother of 3. Brian is just now done with tax season and last Saturday was his 1st Saturday at home in months (after our wonderful family vacation to Disneyland). I would be planting trees and shrubs in my yard! Finally - years of waiting. I would be spring cleaning...I was going do my whole house this year. I would be training for my 1/2 marathon in June and my triathlon in August. I would be organizing my house the way I have been dreaming of. I would be going to the zoo with my kids. I would be couponing. I would be enjoying the spring weather and all of the greatness that comes with it. I would be blogging about other things and working on my Disneyland scrapbook. I would be trying to have as much fun with Jane (our German exchange student) as we can until she leaves on June 8th. I would be placing exchange students for the upcoming year and saying goodbye to those that are leaving. I would be loving having my husband around more and enjoying working on projects with him. I would be planning the details of when and what to do with our vegetable garden. On and on.
I don't know if it's healthy to think about what I would be doing, but the fact is I am not feeling up to doing most of these things. My time before surgery could be just a matter of days or a matter of weeks. We don't know. Beyond that we don't know what kind of recovery time I will have, are we talking days, weeks or months.
Spring to me is a symbol of life, a symbol of hope in darkness, symbol of God's magnificent powers to create and make things once dead alive. If He can do that, He can certainly bless all of us through this trial.
I do not see this as a punishment for me or for anyone else. Life is full of trials, some big, some small, but all make us stronger and I know that I have already been blessed to find greater strength. I find strength in all of those who have already expressed so much love, faith and concern. I feel loved, I don't feel alone. My prayer, of course, is the same as all of yours, full and complete recovery, I want to be here to raise my children, love my friends and family and I feel like I have so many more good things to do in my life. We need to pray for the Doctor's hands that they will be steady and sure.
After the long wait in the morning and the nervous anticipation I got to spend 2 1/2 hours in the MRI tube. Believe it or not it was very relaxing (even with all the noise!). My wonderful mother-in-law came down that morning and stayed with the kids. We had to put my little sweet Levi on a bottle and we knew at that point that I would not be able to nurse him for at least 24 hours after the MRI. He's not a bottle baby at all. (Now we know that we're totally done nursing and Levi has been completely blessed to be able to adjust with very few complaints up to this point. Okay, that was a tangent....)
After the MRI we headed to the Dr's office to get the results. Because the test was so lengthy we had a good wait ahead of us and the Dr said we could wait or come home and he'd call. We decided to come home to be with the kids. We were here for about 45 minutes and his nurse called to say that he did want to talk to us in his office. When we sat down he immediately drew us a picture:
There is no option with this tumor but to operate. Given the location and the complexity of it being surrounded by several small neck vertebrae and my nervous system they won't go in to biopsy. They will only go in to remove. Their best educated guess is that it is a benign tumor. However we won't know that until after the surgery and the biopsy.
The doctors here will not touch such a tumor. I am going to Salt Lake to the University of Utah Hospital. They a top notch hospital. Monday morning Brian and I will be down there for a consultation with Dr. Dailey, the surgeon. At that point they will walk us through everything, including the risks involved, we'll get to see the pictures of the tumor, date of surgery, time expected for a recovery, etc...
I know that many of you had no idea that I was even struggling with my health and you might be asking "where did this come from?" Well, the truth is, I didn't know I was struggling until about 2 weeks ago. As soon as Brian's tax season was over we enjoyed a WONDERFUL 10 day family vacation! We spent time in St. George with my Grandparents and my Aunt, Uncle and Cousins. We then spent 5 very fun and happy days in Disneyland with our 3 sweet kids.
On day 5 in Disneyland a pain that I had been having in my right inner thigh intensified and my chest started to feel tight. I was a little concerned about it because of my previous history with blood clots so I uttered several prayers asking my Father in Heaven to allow me to finish up my vacation and I promised that as soon as we returned I would visit my doctor. He answered my prayers and besides a little added numbness in my fingers and toes we enjoyed the rest of our trip.
I kept my promise and 1st thing Monday morning, after our return I called my doctor. He scheduled me for a pulmonary CT scan and an ultrasound of my two legs. The objective was to look for a blood clot. Good news! No blood clots! I was happy there were no clots but frustrated all the same because I was still in pain. The next couple of days went on the same. No big changes, I even ran 3 miles on Tuesday for a workout!
I started to feel a few more pains here and there, all in random places in my body, all with the same kind of stinging feeling. Things turned south Friday afternoon when I started feeling tingly all over, numbness and dizziness on top of my already mentioned pain. Unfortunately my doctors office wasn't open so I headed to the local Urgent Care to have them just check my vitals (blood pressure, oxygen, etc). While there they drew blood and did several different studies for things like anemia, infection and thyroid problems. Everything came back normal! Yay...I am a healthy person! I took Saturday slow and easy. That didn't stop me from working on a few of my projects (organizing my kids' closets) and laundry. By they time the evening had come my left arm was in a lot of pain and felt completely numb from my shoulder to fingers. Brian and I said goodnight and soon after I laid my head on my pillow I felt the scariest feeling, I felt someone was pouring icy hot through my head and entire body. This feeling popped me right out of bed, I started shaking uncontrollably and literally having a panic attack. Brian gave me a priesthood blessing and tried to calm me down by rubbing on my back. We debated going to the ER or not. I was eventually calm enough, after my blessing and an hour or more of processing and calming down, to fall asleep. Later that night, after Levi had awoken me for a feeding my left leg was completely asleep and pained at the hip and everything started all over again. I got through that one, took a hot bath and eventually was able to fall back asleep for 1/2 and hour before the kids woke up. Sunday I felt okay and we all got ready for church. I was okay until I sat down on the pews at church and another one of my "attacks" came on. I spent the rest of church pacing the halls and trying to get through it. I had one more "attack" that night and once again considered going to the hospital, but we worked through it.
Monday morning, now a week since I 1st went in for the CT and Ultrasound, I called my Dr again. He was booked Monday and I was able to get in Tuesday morning. At that appointment he was considering that I might have MS. He thought it was a long shot, but nonetheless he felt we needed to get an MRI of my brain. Needless to say I was emotional and a little bit fretful of the implications of having MS. I was able to find enough strength and sense of mind to know that I wasn't diagnosed yet and there was no reason to worry. I was done with my MRI at about 3 on Wednesday, after picking up my kids and visiting at my dear friend Christy's house I headed home for just a second to pick up a coupon and go get some pizza. When I got home there was a message from my Dr. "Kara this is Dr Morton, I got your MRI results and I need you come in tomorrow for a followup MRI and I need you to call my cell phone right away." HELLOOO...how often does a Dr give you is personal cell phone number?" I called him right away.
Dr Morton explained to me that there was no concern with my brain. But, when you get an MRI of your brain you also happen to catch a glimpse of the very top part of your cervical spine (neck). He explained to me that there was something very concerning on the top of my spine and that he would have to get a better idea of how big it was by doing the MRIs of my spine.
Well, Wednesday was our 1st dose of reality and I'll let your imaginations decide how that might have felt. At this point we knew there was something and that the Drs were very concerned and felt urgency. We didn't know what it was...
After another Priesthood blessing by my husband and our home teacher Brother McCracken I was once again able to eventually calm down and get through the night. My anxiety had reached an all time high and I slept about 3 hours that night, I had stopped being able to eat because of it, to add to it Andrew woke up with a fever of 103 and a Croupy cough.