Sanguine.

A Year in the Life

2011-08-05T00:16:00.000-07:00

It’s hard to explain but when I look back on this year, it feels like it's actually been 3 years. It felt like time was in slow motion. Maybe that’s how we were able to get through each difficult moment over the last 400 days.

Our daughter Catherine was married just 1 year ago.

It’s like a dream come true that our son Phillip moved here to Portland with his wife to start his new career.

It doesn’t seem possible that all of a sudden my ‘baby boy’ will be starting high school.

Our family will grow with 2 new ‘additions' in the next week.

And I never imagined that after all she has endured, Mary would be working so soon, be engaged to be married, and starting classes back at BYU in less than a month.

Each of us are a different person than we were just one year ago. We are better and stronger because of this past year together.

A Grand Son!

Phillip and Jessica will bring a son into the world any moment now! He will be our first grandchild. He truly represents a new beginning for all of us. We are so excited to meet him and welcome him into our family!

They live and work in Lake Oswego, OR which is a short drive from us. They both work for Precoa~the nations leading funeral planning insurance company. Phillip is their lead video and media specialist helping to expand the company through commercials, videos, and other media. Jessica does technical support and internal event planning.

They are the real life version of Jim and Pam from ‘The Office!’

Love and Other Drugs

Catherine and Kris have had a whirlwind newlywed year. They both graduated from BYU in April. Catherine graduated in Exercise Science, with emphasis on ‘Wellness’. She was hired right out of school by a pharmaceutical company called Meda Pharmaceuticals. She survived 2 months of intense training and is now a pharmaceutical sales rep, or as they say in the biz, a ‘Pharma.’ She calls on 8-10 doctors each day and loves it! Her territory is in Sacramento, CA and includes Stockton, the town I grew up in!

Kris graduated in finance and has been the top salesman in his summer Dish/Direct TV sales job. He is so supportive of Catherine’s new career and loves being back in his home state!

The Freshman

Thomas completed middle school and will be our 4^th and final student at Skyview High School. It has been a classic childhood dream to have all of our kids attend all 13 years of school within a mile of our home. Thomas will play freshman football and is the freshman representative for the Associated Student Body. He is following in each of his siblings footsteps and also making some new paths of his own!

Thomas just finished an authentic pioneer trek in the high desert of Washington with 150 youth. It was set in the 1800’s complete with his clothing and the food they cooked out on the range. He pushed his teams' handcart along with another boy for 23 long miles over the course of 3 days. Lifelong lessons were learned and he seemed to stand a little taller when he returned back to the comforts of home.

Last week he went to Boy Scout camp, inching closer to earning his Life and will spend next week on a 100 mile bike trip with his troop and his dad!

The Princess Bride

Mary’s real life fairy tale continues. She is engaged to Zane Curtis and will be married in the Portland, Oregon LDS temple on August 13. She has known that he was ‘the one’ from the day she woke up from her brain surgery in January. He was by her side then and he will continue to be as they begin their happy~forever~after.

Mary now works for BYU Independent Study in customer service and also heads up several special projects teams. She received a scholarship from BYU and will begin classes this fall.

We are so impressed with her sheer determination and strength.

Zane has 1 year left at BYU and then they will head off to begin his medical school. Mary is studying political science and will continue her schooling and work wherever they end up a year from now.

The Miracle Network

On June 19, 2011, we sat together as a family and reminisced about the milestone that Mary had reached on her 1 year anniversary. It was also Father’s Day and there was no place else that Mary would rather be on such a significant day in her life and in ours.

Mary suffered a massive brain hemorrhage on June 19, 2010.

Then through difficult research and weighted decision, she underwent a craniotomy to remove the AVM which had caused the hemorrhage. She received world renowned care at the hands of a highly skilled surgeon in San Francisco at UCSF.

The surgery was flawless! But it was an extremely difficult recovery that took a full 6 months. Mary will continue with some recovery over the next 6 months. But ultimately, she has come through this with beautiful results.

We sat there together on that first anniversary and shared our heartfelt gratitude. We acknowledged that there is no denying. There is no question. There is no doubt.

Mary is a miracle! She survived a hemorrhage that is usually fatal. Then she came through a risky surgery that invaded the Sylvian Fissure of her brain. The one place where most highly skilled vascular neurosurgeons will not go.

But Dr. Lawton was prepared. And he did go there. And she did recover. She got her life back~miraculously!

Leaving the Nest

So here I am~letting go~again. The summer after her freshman year at BYU, I had a pressing goal: grow closer to Mary and strengthen our love and friendship. I knew that the clock was ticking and I was determined to make that summer really matter.

Be careful what you wish for!

2 months after I set that goal, Mary’s AVM bled. In one year, we became closer than we ever were.

Mary’s example of courage and real life heroic strength, has made me dig deep and do all I can to be a better person. I witnessed her life hanging in the balance multiple times, and now I know what really matters.

Mary’s rapid recovery and the blessing of Zane in her life have given her the wings to fly. But it is bittersweet for me to let her go, again.

This trial gave me the rare chance to have a whole year with her and to be the mom that she really needed me to be.

And suddenly~time is moving much faster now. The slow motion has faded. Mary is ready and soon, she will fly away!

7 Weeks Later~She’s Cured!

2011-03-14T12:21:00.000-07:00

Dr. Lawton & Mary

Heroes

The first time I ever spoke to Dr. Lawton, he said, ‘Surgery is a good option for Mary. She could have her life back 7 weeks from the day we remove the AVM.’

Last Friday, March 11, was 7 weeks from her surgery at UCSF. We had a post op visit with Dr. Lawton the week before. Her surgery was a complete success with a perfect outcome. She has been cleared to resume all of her activities. Mary is cured!

What words can be said to the man who has spent his whole career perfecting his work in order to save my daughter? I tried to thank him that day without getting emotional. He smiled. He knows how grateful I am. He told us he loves his job! What a success story for him. What a blessing for Mary. For us.

We gave Dr. Lawton a special message from Catherine, ‘You are a real hero to our family.’

Mary Had a Little Lamb

In the middle of her senior year, Mary became determined to get a puppy. We already had a dog! Rosie our golden retriever. Mary would be leaving for college 8 months later. Why would we get a new dog?!

Then she got Thomas on board. They researched and scouted the local animal shelter every day. Then they found a white puppy. A lab/retriever mix. The only white one out of a mix of 6 black puppies.

Then they sent me pictures~I melted. Or as Brad would say, I caved!

The first year of training Maggie was a huge ordeal. She was a challenge. But she became invaluable in 1 short year. She is a great running partner. She is an alert watch dog.

But most important of all, she has been a blessing to Mary in her recovery.

From the first moment Mary came home from the hospital, Maggie was calm and gentle. She knew she needed to be careful around Mary. She would stand or lay near Mary and stand watch. Mary spent many hours with Maggie next to her~giving and receiving unconditional love.

Just like all of us, Maggie had changed. And like us, she was better!

Thomas

Be Prepared.

Our family is big on scouting. Brad was scoutmaster for 5 years and is an Eagle Scout Mentor in our council; Phillip and Kris are Eagle Scouts and Thomas is well on his way. My Dad was scoutmaster, and my brothers are scouts including an Eagle Scout.

Being prepared is not only the Boy Scout Motto, it is a way of life for our family.

I have evaluated myself over this past year. Could I have been better prepared to be the mom that Mary needed? There is no way you can prepare adequately for your family member to have a life changing illness. But I have learned so much this year:

~Staying out of debt will help you be prepared financially, in case you need to care for a loved one.

~Could you stop your current life to care for a family member full time, long term?

~Are you striving to have positive relationships with family and friends? It is key to have their support during any sort of personal trial.

~Are you keeping yourself healthy in case you have to help a family member in need?

~How is your faith? Are you striving to have a healthy spiritual life so that if you ever truly need to rely on prayer, you are already confident in your faith?

Therapy

There were a few simple pleasures that helped Mary survive many difficult hours~walks on our trail~Maggie~movies~kettle corn~The Office~music~The West Wing~fruit~texting~soft blankets~Burgerville…

But the immense pain that she endured both after the hemorrhage and after her brain surgery, called for some big therapy. In both situations, during many difficult hours, we would talk about Hawaii. It helped to distract Mary when we would talk about future plans to go there and how much she would love the sand, sun, and the blue water.

While she was suffering through so much pain after her surgery, she reminded us about our promise to go with her to Hawaii. Before we even left UCSF, we began to make plans for a celebration trip.

One month later, we were able to stay in a co-worker’s rental home on the north shore of Oahu for a week. Mary invited Zane because of the significant role he played in her choice of surgery and his commitment to her successful recovery.

There could not have been better therapy than being in paradise together! It was a motivator for Mary in the days and weeks leading up to it and it has been a cherished memory for all of since.

Second Chances

Imagine having the chance to take nearly a year to focus on your daughter. To stop everything in your life and take care of her. Spend every day with her. And really get to know her.

I had a choice: This was an opportunity that I could resent, or embrace. Mary’s difficult illness gave me the chance to be the best mom that I could be to her. We have become close friends. We have a trust and love for each other that could only come about through such a great challenge.

I regret all the pain and suffering she has endured. And the year of her life lost to recovery. But I am so grateful for the year I had to be her mom all over again.

Mary & Zane
Merry Happy

Mary is able to spend some time in Provo. Zane’s wonderful parents invited her to come stay in their home. He flew out here one way and then drove with Mary 800 miles back to Provo in Mary’s Honda.

This wonderful opportunity allows Mary to spend time with Zane and his family, Catherine and Kris, and begin to adjust being away from home after spending nearly a full year recovering here.

She is taking 2 classes online already! So she is keeping busy with those. She has become a great cook and loves trying out new healthy recipes. She can exercise and workout! She can drive!

The goal is that she will be living back in Provo for the spring term and possibly even have a part time job along with her online classes.

Has this road been easy? No. She has endured more than I would ever be comfortable to share here. But she is such an example of courage and bravery to all of us. She ‘wears’ her scar like a badge of honor!

Mary has been blessed with a perfect outcome from a deadly illness. She defied all the odds against her. She faced her greatest fears and arose a champion!

There is still hope in our world. There is still strength in numbers~through your combined faith, prayers, and love.

Mary is determined to live Happily Ever After!

I Left My AVM in San Francisco!

2011-02-01T10:32:00.000-08:00

“I Left My AVM~in San Francisco…” (To the tune of “I Left My Heart~in San Francisco…”)We had a sudden announcement from Mary’s doctors that she would be released. We could hardly believe it~she had barely eaten in 6 days. She could barely even sip through a straw. Her pain level was at a 9-10. She had just opened her eyes for the first time since Friday night. There was still nothing we could do that brought her comfort. But she was ‘stable’ so they felt she could recover just as easily at home.
So needless to say, we felt ill prepared to take our fragile Mary out of this safe place. Now we had some quick, big decisions to make. Mary wanted to go home. That was made clear. Dr. Lawton told us that the best place for her to recover is in her own home. So we took one night in a hotel to be sure.
By morning we felt sure of a decision. Taking her home would be a difficult journey for just a few hours, but the payoff would be great. So we made our way through TSA and all the tangles of security. Imagine a mom pleading with TSA officials to let her daughter not have to take off her jacket, shoes and hat. Imagine them still forcing her to make her way through the metal detector. Imagine how she felt with all those people around. Mary had only walked a short distance a few times since surgery! Her eyes still remained closed for much of the time because they are so sensitive to light.
Her head and entire body were still in great pain. This was yet another thing she had to endure.
But by the time we were picked up by Jessica at the Portland Airport, I could see Mary starting to warm up. She signed ‘Thank you, Mom’ to me in the car. She had a decent sleep that first night. Home felt much better than the constant beeping of I.V. alarms and continual nurse checks.
I’m so grateful that home is where Mary chose to be when she needed it most.

Xena~Warrior Princess
Mary is the bravest, most courageous person I know. I have sat in stadiums and watched her as she warmed up and prepared herself to run the powerful 400m countless times. I have watched her battle the toughest opponents head to head and toe to toe in hundreds of soccer games. I watched her sing, dance, act, night after night never missing a line~never cowering on stage.
But what Mary faced in choosing brain surgery was sheer terror. Knowing that you will put your life~your physical abilities~your future~in the hands of a man you barely know takes pure guts.
On the morning of surgery, Mary was afraid. She had held her head so high and so confidently all those weeks before, but this was the moment~this was her having to leave us and walk out onto that battlefield, alone. We held her and prayed with her and encouraged and reassured. But it was still her battle. She had to let go of our hands and go out to wage the fight of her life.
We couldn’t go with her~we couldn’t take her away~we couldn’t fight her battle. We could only wait on the sidelines and keep our faith and chins up.
Mary is a champion! She never had any complications the entire surgery. She had great vital signs. She came out strong and ready to continue to wage the new battle of recovery.
In such a humble way, her first words to us were, ‘Look what we did! Look what we did! I can use my hands~I am talking~look what we did!’
She never once took any credit for her courage. She was never a martyr. She continued to try and convince us that we fought this battle with her. That she didn’t do it alone. Of course, she’s right. She had all of our combined faith and prayers. She had angels surrounding her. She is so right. None of us are ever truly alone.
Mary is strong and brave and courageous. Mary is mighty. Mary is our miracle.
AmaZane
If you look up the name ‘Zane’ it means ‘Beloved; Gift from God.’ It’s true. He is both.
Zane gets Mary. He has the patience of a Saint and the wisdom of age. He loves Mary’s many strengths and understands her recent challenges.
Zane was not intimidated by Mary’s illness and the uncertain future she faced. He not only helped her make the decision to choose surgery, he stood by her side and held her hand as she went through every step of it.
He took time away from school to be with her at UCSF. He listened and learned firsthand from among the greatest surgeons in the country, in one of the best hospitals. *His professors should give him extra credit for all that he has learned and experienced with Mary’s rare AVM! It’s probably one of the best internships he could take on.
From the moment he saw Mary after surgery, he was completely comfortable with her. The first thing he did was go right to her incision. Even her strong Dad couldn’t do that! He loves her incision! He is so proud of her. He took care of her every moment along with us, and when he left on day 5, we weren’t as strong of a team without him.
He helped her transition to home. He knows just when and how to give Mary comfort with just the right touch. It wasn’t until Zane was with her, back here at home, that Mary really laughed and smiled. At that moment~in our kitchen~I knew Mary was ‘back!’
Zane is beloved. He is a gift to Mary. He is a real life hero in her miracle story.
It Ain’t Over Till the Fat Lady Sings
She’s home! She survived this ‘impossible’ surgery without complications! She has her sense of humor and her voice and her beauty!
But Mary still has a long road. Her eyes are still sensitive to light and to movement. The 9 hour surgery took place behind her left eye. Consequently, both eyes were swollen shut for 5 days.
In order to reach Mary’s AVM, they had to cut through a muscle in your left temple that affects your jaw movement. So speaking, chewing, biting, swallowing, talking~all still uncomfortable.
Food tastes bad again. And she still battles nausea. And she is still in pain. Not just in her head, but all over. The doctors said that with such a long surgery, it’s normal for her to hurt everywhere. Her pain could last 2-4 weeks.
She speaks quietly and so we try to listen carefully so we don’t have to make her take more energy and efforts to repeat herself. She likes the room dark and the noise level quiet. Her brain needs to rest and recover. The pattern of blood flow through her brain for her entire life has abruptly changed. It is working very hard to adjust to its new route.
The eloquent part of her brain was invaded by these life saving hands. It’s the area that controls her speech going out but also her understanding of speech. It also governs smell and taste. Her brain is compensating overtime to still manage all of these duties~and it’s doing a wonderful job! She really is still Mary in every way.
Because of these unique challenges and because we wish for Mary to complete her recovery with the greatest of success, we are asking for no visitors for a while. Mary needs to feel safe and comfortable and in control of something~her day to day environment. Home is quiet and predictable.
But Mary isn't taking all this laying down. Oh no. She was walking on the treadmill today. Today she cooked us a gourmet lunch of sauteed salmon and brown rice. She will soon begin an online class through BYU. Mary is the hardest working patient there is!
Oh. And she has 50 staples in her 8 inch long incision~from the center of her forehead hairline, across and down to where it almost touches her ear. Yes~50.
Don’t get me wrong~Mary is very proud of her incision! In fact, she doesn’t want the scar to fade. Someday, she wants to ‘show and tell’ her story.

Supporting Cast

2011-01-30T16:04:00.001-08:00

Supporting Cast

Mary is resting and enduring tremendous pain. But like a battlefield warrior, she does not give up the fight and she barely complains. In quiet, calm words she will say, 'Is there anything you can do to help me? I'm in so much pain.' She has rated it a level 12 on the pain scale of 1-10.

I am not able to communicate with all of you during this critical time. My focus is on Mary. There are many things to share and so many loved ones and friends who are concerned and providing great support, but I don't even want to take the time to send a text because it takes me away from her.

The many hours of being in her quiet presence though, has allowed me to be mindful of the many loved ones who are making it possible for Brad and I to forget everything else and take care of Mary. Let me share how wonderful they are with you:

Our son Phillip and his wife Jessica~taking care of Thomas, his schedule, pet schedule, and our home.

My parents~Thomas, home, pets and communicating with all of you, for us.

Thomas~7+ months of patience and support, being the 'big brother' that Mary needs.

Catherine~Keeping all of you and the family informed during these critical days on our behalf, the temporary 'ghost writer' of our blog, my #1 cheerleader when I need a boost to keep going!

Kris~For loving Catherine and supporting her as she supports us.

Zane~For literally standing at Mary's side and leading her through this difficult path; sacrificing every part of his life to be with her.

Zane's Family~For supporting him in his efforts, rides to airport, storing Mary's Utah belongings, sending prayers and gifts to Mary.

Lauren~Taking shifts at the house with Thomas and our dogs; a true friend to Mary and all of us.

Brad's parents~At the ready to come here or to Vancouver to help us.

Our Bigelow family here in the bay area~Introduced us to wonderful Dr. Lawton and are nearby for anything we need.

Jessica's parents, The Witts~Loaned us a car for our entire stay and brought supplies to the hotel.

Our extended family, congregation and friends~helping and lending support, especially to Thomas

All of you, literally all around the world~praying, fasting, sending well~wishes.

I try to take a few minutes each day to read through my email or look at messages. I am always boosted and recharged as I read your encouraging words. In turn, that helps us to help Mary! We read her the messages and we remind her of how many people love and care about her. I am so grateful for your faith and the time you take to reach out to us.

I truly feel your love and your strength.

2011-01-26T16:09:00.000-08:00

The Man Who Saved Her Life

Today, Mary and I shook the hand of the man who saved her life. Dr. Lawton came into her room and it was the first time Mary has seen him since surgery. She asked him, "How did it go? What was it like?" He told her that it was long and difficult. She had a very large 'pipe' (artery) feeding the AVM. He dismantled that one during the mid-way point of the surgery. He was actually working on her for close to 8 hours.

Dr. Lawton- Mary's Surgeon

He said, "Mary, move forward with your life. It is done. I will see you for follow up in 6 weeks and then once more in 5 years for an angiogram to be sure it is gone. But for now, forget about it, it's done."

She thanked him. I thanked him. We smiled so much and he smiled. When he walked out of the room, I finally let go and cried in Mary's lap. After 7+ months, it was the first real relief I felt for her. She is cured. She will never deal with this again.

UCSF (to the right of the big tower, where we spoke with Dr. Lawton today)

Blinded Me with Science

We learned a few important things"

Her AVM will not go to 'waste.' Half of it was sent to pathology and half of it was sent to Neurosurgery Research Tissue Bank. They will study it. They are close to finding the gene that determines why AVM's bleed or not. Mary is so happy that the medical community will learn from her AVM experience and help other AVM patients in the future.

We also learned that UCSF has an AVM study group. We met with the head of it back in November and she came to see Mary again today. She told Mary that in 10 years of the AVM study, they have worked with 880 people from all over the world. She is number 801!

The first Saturday in May, they have the annual AVM/Aneurism Awareness Walk on the Golden Gate Bridge. Last year they had 300 AVM survivors participate along with their families and friends. Mary will be there this year!

Battle Wages On

Mary's pain level today is a 7 out of 10. But that's down from 11, 12 the last 3 days. Dr. Lawton said she should not have had the amount of swelling and pain that she has. But it will get better. Her eyes are in pain and she cannot look up. She can open them now though! Her swelling is down and she can shuffle to the bathroom. Hopefully we can find something that she will eat too!

She has many weeks of rest and recovery. We are so grateful for your continued prayers and faith. We will appreciate your patience and understanding that she will need quiet, private recovery for quite a while. But it is only good news and only better days ahead!

We were told with insistance that this was impossible. Don't ever tell us something cannot be done. We will ride to the challenge and prove otherwise.

He cares about more than just her brain

2011-01-25T15:02:00.000-08:00

We have experienced literally every emotion from Monday until now. Monday morning was very difficult for Mary. Her pain was at an all time high, more than any pain that she has felt (including the pain from her hemorrhage) and that is saying a lot. She needed our encouragement to carry on.

The team for the angiogram came many hours earlier than we were prepared for, but that was good. Because she was fasting for the procedure, we were glad to have it over with and not having to dwell on it all day.

The challenge of her having to move from her bed to the transport bed to the angiogram was daunting. Every bump and every touch to her body is painful. So you can try to imagine how strong Mary is. We held her hands and stayed at her side until they literally helped us out of the procedure room.

Mary was almost as fearful of this angiogram as she was the morning of the surgery. She was very concerned that something would go wrong. She felt like she was having to start over and face more challenges from it. They could not sedate her as much and so she had to endure a lot of discomfort and pain.

We waited about two hours and then she was brought back to her room. The neuro radiation doctor, Dr. Farid (from Persia) came to tell us the great news! That the AVM was gone. This is amazing news.

Dr. Farid is finishing up his fellowship here at UCSF. We have been as impressed with him as we are with Dr. Lawton. Dr. Farid has come to see Mary every day since he performed her first angiogram last Thursday. He even worked through the weekend. He has come twice a day since her surgery to see her. He even spent some time talking with Zane about his MCATS coming up and has become very personal with us. He knows Mary's goals in getting through this and as Zane says, "He cares about more than just her brain."

By early afternoon, we were all very concerned (including her nurse Rene) about why after 3 days, the pain meds were not making a dent in her discomfort. She is on amazing meds that work for 90% of similar patients. Rene did some detective work and discovered that there had been a huge oversight: they had not been giving her steroids! This is standard for the first 48-72 hours after brain surgery. It reduces swelling but also provides relief from the pressure and pain.

We had the head of the pharmacy and Dr. Lawton in Mary's room within a few hours and steroids were started. Needless to say, we were pretty upset with this disconnect and because of it, Mary had to suffer far too long.

Steroids brought relief along with a new oral pain med and we noticed that the pain is more tolerable. On a scale from 1-10 her pain has been a 12 since Sunday and now it is about a 9-10.

She enjoyed listening to the Bachelor tonight and imitated every voice on the show! It is ironic because the Bachelorette was on during her last hospital stay. Although she can barely walk to the bathroom and stand to wash her hands or even open her eyes, she is very independent and we are confident she will recover. She does not want us to help her find things, she wants to do it on her own.

She was able to talk with Zane for the first time since he left and she showed a little spunk with him! That was so encouraging.

I forced myself to leave her and stayed at the hotel alone. Brad stayed with her at the hospital. It was a long drive for me and a lonely walk to my room, but I needed to recharge and get some good sleep. I think it is good for her to be apart from me for this short time. It felt so much like the day I had to leave Thomas in the NICU as a preemie.

Of course, within a half-hour of me leaving, she opened both her eyes for the first time! She had an uneventful night with quiet sleep. Many rounds of doctors in the morning. They are urging

her to eat and to work on opening her eyes. She saw a nutritionist today to help with all of that.

Her thighs are very tender and stiff from the angiogram in each leg. And her eyes have been swollen shut since Saturday, which is why they are hard to open. Dr. Farid explained that her surgery was very long and that is why she feels pain all over her entire body.

As Phillip says, she is making 'baby steps-literally.'

Our faith is sustained and our resolve strengthened through your prayers and wishes. We are so grateful for all of you.

Swelling goes down, Spirits go up.

2011-01-24T20:45:00.000-08:00

This morning my sister had another angiogram to be sure that all of the AVM is gone. A team of 3 doctors came in to talk to her about the procedure. She did not have a good night last night and slept about 3 hours, feeling very uncomfortable. She has another excellent new nurse today and has been working hard to find the right meds that work for Mary.

The pain meds that work for most patients just like her are not nearly enough! But, although she is in pain most of the day, she still finds ways to make us smile.

My parents stayed with her until the last moment before she went in for her procedure. One of her Doctors, Dr. Farid held her hand, and was wonderful with Mary.

The machine that they use for the angiogram is huge. She was not completely out but had enough meds to keep her in less pain and discomfort. The procedure lasted for 2 hours and from the doctor's mouth, " The AVM is gone. No leaking. Looks very good." I cannot believe we got to hear those words.

Mary will have to return to SF in 6 months for another angiogram to be sure everything still looks great.

She is now on drugs that will help the swelling of her face and neck go down. She is 50 % better than she was earlier today and is happily enjoying listening to the Office/Bachelor tonight (her eyes are still swollen shut.)

Although her eyes are still swollen shut, her swelling is slowly going down and her spirits are going up.

Thank you again for all of your thoughts and prayers. So far, this could not have turned out any better and we are so, so grateful.

We love you Miracle Mary.

Miracles Happen Everyday

2011-01-23T20:54:00.000-08:00

Today Mary made more huge strides in her recovery process. Still in intense pain at random times during the day but cracking jokes, smiling and chatting with everyone she sees. Early this afternoon Mary was able to walk up and down the hallways of the hospital with someone on each side to help her along. Both of her eyes are swollen shut, but she was able to get a small glimpse out of her right eye to see out the windows of UCSF at the Golden Gate Bridge.

She has been in pretty good spirits all day and even got to see herself in the mirror for the first time today. We were worried that she would be sad or scared when she saw her swelling but being the Mary that she is, she simply had a good laugh. It is only temporary and was expected by her doctors, which makes things easier.

She had a rough patch this afternoon, intense pain in her head and body, but was good as new for a couple of hours with some heavy drugs:)
Mary's fave nurse, Brittany

Zane went back to Provo tonight, and it was bittersweet. He has been amazing with Mary. He is always by her side. Helping her eat, helping her to calm down when she is in pain, massaging her to make her feel more comfortable and listening whenever she wants to talk. She did not want him to go but they will see each other soon and a little of that "Zane Magic" will return!
Mary brushing her teeth for the first time:)

Today we saw Mary's personality come back and had fun joking, laughing and telling stories. Tonight she was able to talk to her siblings, and what a blessing that was. Catherine was able to video chat with Mary and Peggy for almost 2 hours and they had so much fun. Technology is truly amazing.Sister Catherine Brother Phil

Tomorrow she has another angiogram to triple check that they got all of the AVM out. We ask that you keep her in your prayers for tomorrow. We have continued faith and have been blessed so much in the past several months. We could not have imagined a better ending to one chapter and beautiful beginning to the next chapter of Mary's life. What a bright future she has ahead.

We love you Miracle Mary.

Continued Prayers

2011-01-22T22:27:00.000-08:00

Zane and Mary, she always has someone by her side.

Mary is doing really well today, considering what she has had done. This evening she was moved out of the neuro ICU and onto the neuro recovery floor. What an amazing thing. This means that she is completely stable, although on pain killers to keep her as comfortable as possible.

She has had major pain today but not more than expected. Any movement of her head or near her head is torture, so we stay close to her side and try not to make any sudden movements. Today she had a CT scan to verify that everything was removed and as far as that scan went, everything looks great. On Monday she will have another angiogram (where they go through the femoral artery and dye is shot through the vessels up to her brain) to triple check that all of the AVM was successfully removed.

Mary likes to have her hand held and just to have us near. Today she was very quiet, simply exhausted but she did whisper to us a little here and there.

We are so impressed with UCSF staff and hospital. They are amazing and treat us so well. Exactly what we need this week. They have 2 neuro ICU floors and an entire neuro wing for recovering neuro patients.

Mary is not the typical post-op patient-they treat her fabulously. They let us be with her in her room and have been very accommodating. This has been a huge relief for our family.

There are beautiful views out of every window and an amazing cafeteria (helping with the occasional Diet Coke need:)) She now is in her own, quiet, private room-which is a great blessing.

Today has been a difficult day. Lots of pain, which is expected but always hard to face. They are taking phenomenal care of Mary and are planning to get her up and out of bed within the next couple of days. She has made it this far and we expect that she makes great strides within the coming days.

Continued prayers are greatly appreciated. We love you all.

Miracle Mary

2011-01-22T15:12:00.000-08:00

Mary is sounds asleep... She did great for her CT scan today. She is very quiet and tired but the doctors are happy with her status. She is in the ICU today and we will find out soon if she will be moved out of the ICU to recover or will spend a few more days there.

Peggy and Brad are by her side constantly and are enjoying watching this amazing girl recover. Mary has had a rough past 8 months but yesterday we saw a glimpse into a very happy future for this girl.

Although there is a long road ahead, we know she can do anything!
Zane feeding her applesauce, only took 1.5 hours:)
Always close by.

More pictures and quotes from Miracle Mary to come!

AVM out.

2011-01-21T20:08:00.000-08:00

Today Mary's AVM was successfully removed! They closed her up around 5PM in San Francisco, and we are patiently waiting to see her. When Dr. Lawton came to give us the post op update he said, "All went well!" It was one of those moments we will never forget.

He thanked us for coming to him and San Francisco and said that all of the prayers helped.

We are so thankful for Dr. Lawton and his surgical team! In about 5 minutes we will get to see Mares and cannot wait. She is so strong, so brave and truly a miracle.

Here's to a successful recovery!

We love you Mares.

Below are some pictures from today.

Lots of waiting, here is a restaurant we went to to get our minds off of things

This is why we came to San Francisco

Zane and Brad waiting patiently

What a beautiful place

2011-01-21T13:22:00.000-08:00

For more information and posts as Mary is on this journey, check on her sister's blog:

thewillenbrechts.blogspot.com

<3

Here we go!

2011-01-21T11:53:00.000-08:00

In the pre-op room, ready to go!

At 9:15 this morning the first incisions were made. The surgeon guessed that the surgery would be 6 hours, but we are just focusing on the small updates that we get each hour.

Mare was very happy. She drifted off to sleep easily before these brilliant surgeons, nurses and anesthesiologists went to work.

Surgery is still underway and they are studying now how they will proceed with the removal of Mary's AVM. But don't worry, Mary was telling all of the nurses she loved them and was trying to relax by starting to plan her next vacation to Freeport Bahamas:)

We Love You Mares.

Necklace that was given to Mary by Zane and they let her wear it into surgery.

See you soon Mares!

Peg and Brad taking a walk to distract themselves and getting hourly calls updating them on Mary's status!

Believe! Mary’s 7 month AVM Anniversary!

2011-01-19T02:21:00.001-08:00

On a Wing and a Prayer

I still have to pack myself but for the most part, we are ready to go! We have a team of eager helpers all set to care for Thomas, our dogs and our home. Tonight we were able to have a special evening at home with Phillip and Jessica. They and my parents will stay with Thomas during our first week away. It is not easy for me to leave Thomas for 2+ weeks under such serious circumstances. But imagine how grateful I am to have our family nearby. It is such a blessing that my film student son’s first job just happens to be 30 minutes from us. Amazing!

Thomas, Mary, Phillip, Jessica~the night before we fly to SF

After some routine appointments on Wednesday, we will try to make the best of Mary’s free night before she is admitted on Thursday. We’ll have dinner at a favorite spot, drive over the Golden Gate Bridge and take in some sights of the city.

While we are in San Francisco we have some wonderful support. Brad's company, Oracle, has allowed him time off to be with us and have given us great personal support. My cousins who referred us to Dr. Lawton, my aunt and uncle, and Jessica’s family all live in the bay area. Brad’s parents live in Placerville, about 2.5 hours away. All of this was important in our decision to choose a San Francisco surgeon vs. those surgeons in Dallas or Phoenix.

Mary and Zane

During that difficult decision process, Zane helped Mary to have the courage to choose surgery over Cyberknife, saving her life. He was with her the day she found out the date of her surgery. Even though he has a heavy load in school and is also preparing to take the MCAT’s, he has arranged his life in order to be with Mary as much as he can. It is important to both of them that he is with her before she goes into surgery and when she wakes up.

The visiting hours are much more restrictive at UCSF than the ICU here in Vancouver. But we plan to be with her every moment that we can. We anticipate she will be in the hospital for about 1 week. We will stay an additional week in the bay area in case there are any immediate complications. Dr. Lawton expects that we will then be able to fly back and Mary can recover at home for about 6 more weeks.

Mary and Peggy

Believe!

Just before Thanksgiving, we flew to San Francisco to meet with Dr. Lawton. I had so many concerns and mixed emotions as we sat in his office that day. From the moment we found out that Mary had a large AVM in her brain, we were told that surgery was not an option. We had learned everything we could about Cyberknife (radiation surgery) and Mary already had all of the preparatory tests completed. They even had made the special protective mask that she would wear.

Yet, there we sat~in a strange hospital~700 miles from home~with a surgeon we just met~telling us that this ‘impossible’ surgery could save Mary. He made every effort to be sure that we understood the risks and the benefits of surgery vs Cyberknife. He explained why he believes he can remove Mary’s AVM and why it is ultimately a much better option for her. He told us that he can give her a 90% or better chance for a full cure and complete recovery within 8 weeks!

In 2010, UCSF was ranked #1 in neurosurgery and neurology on the west coast. Dr. Lawton is one of the few vascular neurosurgeons in the US, qualified to remove Mary’s AVM. He will be her surgeon on Friday. Many students and specialists all over the country will learn from Mary’s AVM. UCSF has an AVM study group that will follow Mary’s case for the next 2 years. Mary and I are so excited about that!

Of the many people who read about Mary, I know that this audience is comprised of many different religions. Even though some of you do not believe in any religion or even in God, there is still a measure of hope and faith. Thank you to those who have prayed for Mary, even though you have not prayed for anything else for many years. Your combined good thoughts, well wishes and prayers on Mary’s behalf have made a difference in her life. I believe that we cannot get through this trial or any other trial without each other.

I believe that we have seen miracles through Mary. On June 19, 2010 Mary lived. Over the course of her critical condition in the ICU, she lived. 10 weeks later, she began classes at BYU. In 7 months, she has not been sick one time (an actual illness, not including nausea & headaches!). Mary’s AVM separated itself after the hemorrhage, ending up in the Sylvian Fissure, making surgery possible

No matter what you believe, miracles have happened to Mary this year. I believe that there are more miracles to come. Mary will have a successful surgery this Friday morning. She will fully recover and lead a full, happy, normal life!

Believe!

Mary Christmas

2010-12-25T21:38:00.000-08:00

Good Will Hunting
36 hours before Mary’s scheduled CyberKnife procedure (radiation surgery), we learned that brain surgery was a possible option. We had to make a quick decision to delay the procedure in order to pursue a second opinion.
We were clumsy and timid at first, but we grew confident in our search. We consulted with 5 different chief vascular neurosurgeons in 5 different states.
The prep work leading up to each consultation took about 2-3 days of our full time attention. Brad, Mary and I would listen to all of the details together. They were overwhelming, serious, and difficult things to hear. But we recorded audio, took notes and discussed all of it as a team.
The last surgeon we consulted gave us some great counsel on making our decision: take all of the information we had and set it aside for awhile. Usually within just a few days, the answer will come and we will know what is best for Mary.
The pressure and stress of all of this was almost too much for Mary to bear. We decided that she needed to escape and get away from it and from us! So she flew to Provo, UT for a long weekend with Catherine, Kris and close friends. That was the best decision we had made so far.
A Beautiful Mind
We learned so much about Mary’s AVM. It is specifically located in the ‘Sylvian Fissure.’ This is the area between the frontal and left temporal lobe, which is behind her left eye. Dr. Lawton at UCSF, told us that ‘Mary’s AVM has some really nice features. When it bled in June, it separated itself nicely from the brain, sitting in the fissure.’
The Sylvian Fissure is in the eloquent part of her brain. This consists of the areas of the brain that allow us to communicate, perceive, interact, and have movement. These regions of the brain regulate our senses, movement, and speech.
Her AVM has a massive volume of blood that rapidly flows through it. It is nearly 5cm long and 1 inch in diameter. It is a cluster of blood vessels and arteries all tangled together. With surgery, the tricky part is to stop that blood flow, choose the best vessels to tackle first, and avoid any damage to vital features in that area.
The surgery to remove an AVM in this location, is the most difficult surgery that a vascular neurosurgeon will ever do.

A Star is Born
Over that long weekend, Brad found a great diversion. Every Christmas for the past 10 years, he has hung a 25 foot star that he built in the sky above our house. It has become quite the symbol of Christmas for our little Felida community. It was even featured in The Columbian one year! If the star isn’t lit by Thanksgiving weekend, he starts receiving calls requesting it to be turned on as soon as possible! It is visible all the way across the Salmon Creek bridge and calls attention to all who pass by.
Last year, the star had too many technical difficulties and it was missed by all of Felida! Our grown kids said its absence really made a difference in their Christmas. So Brad took that quiet weekend to build a new and better star! The timing of its inauguration could not have been better.
On Monday, December 6, Mary returned from her getaway to Provo. While she was gone, Brad and I realized we had each come to a decision. We wondered if Mary would have the same answer as us. We decided to not talk about it until she had been home for 24 hours.
Mary spent a few minutes telling me about her weekend and in conclusion she said, ‘Mom~I’m not afraid anymore! I need to have surgery. That is my answer.’
I immediately fell into her arms with tears. After 18 extremely difficult days, we had an answer! But more importantly, all 3 of us had the same answer:
Mary will have surgery to remove her AVM on Friday, January 21 at 7:30am at UCSF in San Francisco. Dr. Michael Lawton will perform the surgery. She will begin pre-op appointments on the 19th and is expected to make a full recovery within 2-3 months.
Within a few moments of this amazing discovery, Brad asked us to come help him hang the giant star. Mary and I could hardly contain our excitement and relief, but we put that energy into pulling the ropes. It took our combined strength to hoist it up as Brad directed and kept the ropes from tangling.
Soon it was taller than the giant fir trees, back up in the sky for all to see its great message of peace, joy and hope! The star will be our symbol of this great Christmas gift for Mary.School of Rock
On December 15, Mary took her New Testament final exam online. It signified the completion of an impossible goal: to return to BYU for fall semester. It was a tough semester being so far from home so soon after into her recovery. But with strong support from Catherine, Kris, and very dedicated friends, she was able to live independently and complete her goal.
She began insisting to us the first week in the ICU, “I am going to BYU on August 30.” She never doubted that it could happen.
But there is an important reason that Mary was supposed to return to school. Delaying CyberKnife gave us the opportunity to learn that surgery was a better option for her full recovery.

Surprise gifts
Mary has given us more gifts than she realizes. Being close to her during this trial, we benefit from her strength and determination.
She gave Thomas the impossible chance to be a ‘big brother.’
Catherine said this year she has gained more knowledge than ever before.
Mary can still make Phillip laugh louder and with more joy than anyone else!
I have had the opportunity to become a better mother. But I am most grateful that Mary and I now have a stronger friendship.
Getting to the Heart of the Matter
These past several months, we have worried more about Mary than ever before. She has had to endure so many challenges and it began to weigh heavily on her heart. At times, discouragement crept in and she lost hope of her future. She wasn’t able to drive, run, or taste food~and then she even had to leave school. Not mention the fact that she was facing risky surgery of one kind or the other. She had a lot to be angry and frustrated about.
I am so thankful for a particular friend who stayed in touch with Mary this fall. Zane was sympathetic to her situation and listened carefully when she needed to vent. He didn’t give up on her when she had to abruptly pack up and leave school. In fact, we woke up that morning to find he had loaded all of her belongings into the truck for us.
All during the difficult surgery decision process, Zane helped to give Mary courage in what she faced ahead. Her sincere explanation is, ‘While everyone was so concerned about my head, Zane warmed my heart. He helped me to be brave enough to take the biggest risk so that I can have my life back. He saved me.’
City of Angels

‘When god can’t be there he sends an angel and when an angel can’t be there he sends your friends.’ Anonymous
Countless times I have endured a really tough moment because of one of you. You have been inspired in one way or another to reach out and show love and support to us. A simple text, email, card, call or encouraging words have often been what has boosted me to help Mary endure such a terrifying ordeal.
We continue to count on your sincere prayers for Mary and all those who will be a part of this surgery. Your faith will add to our faith. This surgery will work for Mary!
I want to be more like each of you and be the one to give solace and strength to others. This Christmas day, our family truly knows that our faith and love for each other are all that we need to carry on. This has been our most meaningful Christmas.Better Days

“And you asked me what I want this year
and I try to make this kind and clear
just a chance that maybe we'll find better days
'cause I don't need boxes wrapped in strings
and designer love and empty things
just a chance that maybe we'll find better days…”

by Goo Goo Dolls

Eat, Pray, Love~Mary’s Thanksgiving Update

2010-11-29T13:08:00.000-08:00

House, M.D.

We took an opportunity to get a second opinion on Mary’s case. Our family in the bay area referred us to an AVM specialist. After many days of researching his work online and several emails back and forth, we sent Mary’s films and scans to Dr. Lawton at the University of California at San Francisco Medical Center.

Late one evening he called after he had reviewed Mary’s case. He felt confident that surgery was an option to remove the AVM. Up until now, Cyberknife has been the only safe choice.

We don’t have a lot of time to make this decision. The scans, MRI and prep work that was done last week for Mary’s Cyberknife can hold and still apply for about 3 weeks. But the clock is ticking.

After many hours of discussing this together and a few more meetings with Mary’s Vancouver surgeons, we all agreed that we should go meet with Dr. Lawton and hear more about his perspective.

Dr. Lawton has been a vascular neurosurgeon for 20 years. He trained under another AVM specialist in Phoenix, AZ at the Barrows Neurological Institute. He has removed over 500 AVM’s in his career.

All of Mary’s doctors here and the UCSF doctor are respectful of each other and of the weight of this decision. The goal is for us to know as much information as we can so that we can make the best decision for Mary’s health both now and the future. Neither option is simple and they each have serious risks. But we are so grateful for this opportunity to learn even more about Mary’s beautiful brain!

Planes, Trains and Automobiles

We had our family Thanksgiving this past weekend. Catherine and Kris have to stay in Provo as the RA’s of their student apartments. So we celebrated early. We had a great weekend together and it was as if time stood still. We played games, watched movies, shopped in the city, ate and laughed a lot. It was heaven at home!

On Monday, with one day’s notice, we confirmed an appointment with the UCSF neurosurgeon, booked flights, hotel and a car. Phillip and Jessica stepped up again, and came to stay here with Thomas.

This quick trip was all about Mary’s health, but in a short 24 hours, we also had time for some family fun. We were able to see our cousins Brian and Audrey Bigelow and their beautiful children Ariel and Aiden for an evening. They came into the city to meet us for dinner and dessert. Mary loves kids and is always the one that kids can’t get enough of!

We had a great sleep and the next morning we made our way to the appointment with Dr. Lawton. UCSF is a huge campus on a hill with sweeping panoramic views of the whole bay. You can see the Golden Gate Bridge, the city skyline and Coit tower. We had 90 full minutes Dr. Lawton and his staff. He is so busy but he took the time we needed to answer all of our questions.

We drove back into the city and had a chance to meet up with Jessica’s family for some shopping and a quick visit. They live in the bay area and happened to be downtown for the day. It was great to give them hugs and we even saw Jessica’s grandparents.

That night our flight was delayed until after midnight, but it gave us some time to reflect and talk together about our significant meeting. We took the airport train into the terminal and made our way to the plane.

It was now technically Thanksgiving. After takeoff, the cabin was so dark and quiet. It seemed as though Mary and I were the only ones awake. The flight attendant brought us a beautiful snack of fresh veggies, warm spinach dip and breadsticks. *It’s important here to remember that Mary’s senses of taste and smell were affected by her hemorrhage back in June. Nothing tastes or smells like it should.

So I didn’t think anything of it when Mary started eating her snack. She always tries whatever food is in front of her. But at this moment~something was different. She was eating the snow peas and had a surprised look, ‘Mom! This tastes like it used to!’

Then she proceeded to eat all of the snow peas. And mine too! Then she moved on to the carrot sticks, celery, and the breadstick. One by one, they all tasted as they should! The last thing was the spinach dip. It was warm in a little ceramic dish. She held it up to her nose and kept inhaling the aroma. ‘Mom, I used to love this so much. Now I can smell it! It’s so good!’ Even her cranapple juice tasted good.

We sat there, in the dark, with smiles from ear to ear. Brad was sound asleep across the aisle.The flight attendant had no idea that she ‘handed’ Mary a Thanksgiving miracle that night. I sat wiping tears with my napkin, way up in the sky, so grateful for such a simple but important blessing.

Mary has not been able to taste, smell or enjoy food for over 5 months. So much of life is about food! It’s how we socialize and help others. We have to eat to live! On this day of all days~a holiday that is all about food and giving thanks, Mary was able to taste and smell again.

I am so grateful for the privilege and honor it is to be Mary’s mom. I learn so much every day that I spend with her.

Wishing you a wonderful Thanksgiving weekend with those you love~

The GoodwinFam

Mary’s 5 Month ‘Anniversary!'

2010-11-12T17:42:00.000-08:00

“A journey of a thousand miles begins with a single step.” Lao-tzu

From the earliest days of Mary’s recovery, she was so sure that she would return to BYU in the fall.

On August 29, Mary and I began the 850 mile journey to Provo, UT by car. Class started at 10 am the next day, so we had to make the trip in one day.

In 1 week’s time, we were able to find an opening in an apartment very close to campus and close to Catherine and Kris. Lauren came and helped her pack until very late that night.

She was ready to go! We had a beautiful drive. It was exhilarating to see her realize such a lofty goal.

We arrived by 8pm and unpacked the car. She even was able to attend her ward prayer that night and meet her roommates.

There were skeptics of such an impossible dream. I will not suggest in any way that there have not been challenges with her being so far from us, this soon. But every week she has accomplished great things. She has inspired everyone she has met.

View from Mary's apartment

17 Again

No one ever wants to go back to high school. But have you ever wished you had a chance to drop everything and go back to college? Listen to great lectures, walk around a scenic campus set right against high mountains?

I stayed in Provo for 2 weeks with Mary. I had the privilege of attending classes with her. I found myself taking notes! I learned more in 2 weeks than I have in a decade. My goal was to shadow Mary, not to hover. I wanted to be sure that she could manage her schedule and independence.

She loves school! She is taking French 321. Most of the 20 other students in her class have served a 2 year French speaking mission or have completed study abroad. Mary has had many years of French in school and has been to France twice. But as you may recall from earlier posts, she lost most of her French after the hemorrhage. Gradually, over the summer her 2^nd language returned.

The 2^nd day of class, her professor come up to us and said, ‘Mary is using future tense. Most of these students aren’t able to do so yet. She will do fine in this class.’

Mary is also in New Testament. It not only focuses on the text, but also on the people in those lands at that time. There is a rich history to appreciate. Every class session I was able to appreciate more of the story of those who lived there, then.

I learned many lessons in these few weeks. I cannot imagine how much Mary is progressing and learning every day since I left her. I am inspired by her dedication to gaining more knowledge.

Both BYU girls!

Sliding Doors

That first week back at school was pretty crazy. I was helping to get Mary settled. Phillip and Jessica were packing their apartment and finishing their last week of Provo jobs. We were all able to help them load up and clean their apartment. Catherine and Kris were managing student apartments and Catherine had finals from her summer online classes. She also had a new job as a server in an upscale, busy restaurant.

And Lauren came for a surprise last minute visit to see all of us!

In order to give Mary more freedom, I had rented a hotel for the rest of that week. It worked out perfectly. Phillip and Jessica had a place to stay once they were packed up. Lauren and I were able to visit with them every night and catch up on the events of the day.

On Friday night, we said our goodbye’s to Phillip and Jessica. They headed off to their new life~finally done with school! Phillip started his job in Portland on that Monday.

I could see so many ‘doors’ opening for each of my kids. I cannot deny that in the middle of all of this chaos, I can also see so many blessings.

Thomas, Phillip & Jessica at Crown Point above Multnomah Falls

What Lies Beneath

I just sit back astonished at the pure gratitude Mary has for this experience. She tells us often that she is ‘grateful for her AVM.’ That it has made her a better and stronger person. That it has made her see the end from the beginning and love her life and her family far more than she could before.

A few weeks ago, she was asked to speak to a congregation of about 300 in her student ward. The topic was gratitude. Each speaker before her one by one, shared almost word for word what she had prepared all week! She had 7 minutes of notes and a well-rehearsed talk. But now she had a choice: either she would deliver a repetition of their words, or share her recent story of challenge and how grateful she is for it. She stood up and did just that. It was inspiring. She was a little baffled at why so many of her peers came up after to hug her and thank her for sharing her story.

I’m not surprised at all!

Mary's roommates~Marlena, Lizzi, and Courtney

Hell’s Kitchen

Imagine everything you love to eat, all of a sudden tasting really strange. Imagine almost everything you enjoyed before, now tasting like ‘soap and metal.’ Imagine feeling nausea every day~whenever you smell food and when you eat, you feel sick.

Now imagine this going on every single day for 5 months~having no satisfaction from the taste of any food. Sometime in early July, this happened to Mary.

Mary loved all kinds of food before! She is also a great cook. Being an athlete her whole life, she also knew how to eat well and food was her fuel. But now she doesn’t get to enjoy the taste of all the foods she once loved: pizza, salads, steak, ice cream, fruit!

After several months of this, it started to ware her down. It also became more difficult when she was out with others and there weren’t any options on the menu that she could handle eating. Sometimes people would lose patience with her situation and forget that this is a real challenge for Mary. She was losing weight faster and losing this battle.

But the timing of this crisis was good~she had a trip home already booked for a long weekend visit. The perfect opportunity for me to give her some relief and help her get some great rest, better food options, and new medicine to conquer the nausea.

Thank goodness for a doctor who really listened and heard our pleas for help. She not only had a restful week rebuilding her strength and convictions to return to school in great shape, but she also gained a few pounds!

Some doctors think that once the AVM is dissolved through surgery, her taste will return. Some say that one of her meds may be the culprit of her stolen taste. Time will tell. In the meantime, Mary is doing so much better and able to eat without feeling sick, most of the time. Taste is still a bummer, but Mary is gradually able to eat a few more foods every week.

Recently, Catherine made roast, veggies, and homemade rolls. She called so excited, ‘Mom! Mary filled her plate and ate the whole thing!’ It sure felt like Christmas to hear the great news!

Mary 'taking on' a big dessert!

Dream Team

I was able to go visit Mary and Catherine in October at BYU for Parent’s Weekend. It was perfect timing with Mary’s birthday too. Catherine and friend Jamie, had planned a big bash for her 20^th!

I was overwhelmed with how many friends and family came. Many drove from SLC an hour away just to wish her well. Erin drove down with a broken foot~cousin Lindsay came even though she only knew us~several other friends drove a long way. Some of Phillip’s longtime friends came to wish a little sister well. The room was filled with so much joy it boosted my resolve. She should be here! She should have this chance to make great friendships and live life to the fullest. When she blew out the candles, it was like it was the beginning of the first day of the rest of her life. And it was!

Just a few of the birthday bashers~so many amazing people in one small place!

Brad, Mary and I rely on this amazing team~Mary’s ‘Dream Team.’ Phillip and Jessica are here in the NW near us. They have been like 2nd parents to Thomas and sometimes to Mary. They give us joy and friendship and help to fill our quiet, empty house with love and laughter.

Catherine and Kris are our eyes, ears and hands for Mary so far from home. They have sacrificed time, sleep and their personal lives to be there for her. They have risen to the challenge again and again and Mary’s love for them is deep. Kris has only been in our family 6 months but already, he is a brother and son to us without question.

Kris & Catherine

Thomas has been the coolest kid I’ve ever known. He has never complained once that he lost the consistent attention of his mom 5 months ago. He has had to become instantly independent and has learned that he is part of a family and sometimes that means turning away from ourselves to help someone we love. And through it all, he gives me great comfort. His football championship was a wonderful treat for me this fall!

Thomas with the team's district championship trophy

Many close friends have been so good to Mary. Rides to get groceries, studying together, and comfort when a phone call from Mom would not do the trick.

Mary’s roommates are amazing gifts in her life. Marlena was also a track runner; Elizabeth is friends with Mary’s cousins, and is from the NW; and Courtney is studying speech therapy and knows a lot about Mary’s AVM! How could we have picked a better place for her to live?!

Braveheart

Mary was a tiny little girl. Big brown eyes, soft tanned skin, and so meek and quiet. She was a preemie and for the longest time, she was small for her age. But we first noticed her bravery when she was 18 months old. She would walk up to the neighbor’s huge dog without any fear. We joked that she would probably go up to a bear in the woods with no hesitation!

At age 5, her Nana got horses and Mary’s love for them grew. Again~huge animal~no fear. Nana was always impressed with Mary’s ease around her most grouchy, stubborn horse Sadie. Mary could ride her and handle her like a pro.

Mary faced stronger, faster opponents on the field and the track and never backed down~never gave less than her all. She could entertain an auditorium filled with people, singing and performing night after night and never have stage fright or forget a line.

Mary is the bravest person I know. I have watched her face this trial with great faith and courage. She is confident. She knows that soon, this will be behind her. She has been through the worst already. She has faced the ultimate opponent and won!

Yes it’s been difficult. It has changed her life and it has impacted those close around her. Imagine being 20 and not being able to drive. Imagine having been a sprinter your whole life and being told you can’t run! And on top of that, nothing tastes right!

But Mary doesn’t complain about those things. (She did mention recently that she can’t wait to run!) She does look forward to driving this winter. She knows that food will be her friend again soon…

Mary still had straight A’s in her classes at mid-term. She will complete this semester and come home to have her Cyberknife procedure right before Christmas. That will target the AVM that is still in her left temporal lobe. It will gradually dissolve over the next few months. She will have a long full life ahead of her with more horses to ride, more races to run and all the world will be her stage!

Mary this week at BYU

P.S. I Love You

At 'press time', we have a big update for you. Mary had a series of symptoms in class on Monday which led to a quick trip to the ER. Catherine and Kris handled everything beautifully until I could arrive by plane a few hours later. Remarkably, there were no changes in Mary's AVM. However, we had to make a very difficult decision: To bring Mary home now~just 4 weeks from finals and move forward sooner than planned with her Cyberknife treatment.

In 48 hours, we had Mary's things all packed up and stored; we met with her professors; consulted with neurosurgeons in 2 states; consulted with BYU administration; and had time left for Mary to say goodbye to so many wonderful friends.

Thank you to some amazing ‘angels’ who loaded the truck, stored boxes and stopped their important studies to make time for Mary.

*Mary will be able to finish one of her classes online!

I've been a mom for 25 years but walking off campus with Mary and Catherine, and then taking Mary on that long drive to the airport was the hardest thing I have had to do~ever.

If anyone believes that it was a mistake for Mary to have had these 3 months away at school, I will defend our decision without any doubts. Mary made an impact on so many more lives than if she had stayed home this fall. When she returns someday soon, the story will have come full circle. Those who saw her rise to these challenges will see her successful return. Otherwise, she would have been just another 1 of 30,000 students making their way through another semester.

It took a huge leap of faith to take her to school this fall, but I will tell you what~bringing her home early took all that I had to give. Especially because she looks and feels better than she has in many months! It seems like we should have come to the opposite conclusion.

Mary met with her surgeons for 4 hours yesterday in preparation for Cyberknife (radiation surgery).

We learned that Mary is very likely the only person in the United States who currently has what she has~a young adult female with an AVM of this size. Her doctor said that when he says the AVM is large, he means 'it is taking up at least 1/4 of her brain. Think of it as a grapefruit as opposed to a golf ball.' Most AVM's range from the size of a dime to a half dollar.

Remember, it is not a tumor~an AVM is a cluster of veins that is rich with blood but completely unnecessary. Adding to its massive size, Mary's AVM is in a very tricky location. There is no way to go in and remove it.

But Cyberknife will target radiation in only very specific areas of the AVM. They have to carefully avoid her carotid artery which runs right through it.

Mary will feel nothing! She will have her iPod on and just lay there. In fact, she shouldn't have any symptoms until about 1-2 weeks later when she may have some nausea or headaches short term.

It will take months for the AVM to die. Eventually it will shrivel up and no blood will flow through there. It will be gone and behind her and she will have a full and healthy life.

Mary has an MRI and CT scan on Monday November 15 and they will fit the mask that she wears during the treatment.

On November 19, 5 months exactly after the day her brain hemorrhaged, she will have her Cyberknife treatment. What an amazing anniversary!

If you could do one thing for us it would be to pray for Mary's doctors that they will be guided in all that they do and that Mary's AVM will respond well to the treatment. Mary's congregation at BYU is fasting and praying for her this Sunday.

More to come next week!

With Gratitude~

Peggy and the Goodwinfam

2 Months~9 weeks~72 days~1728 hours~103,680 minutes

2010-11-12T17:36:00.000-08:00

Mary’s friend Lauren and I were looking at pictures from late July. We all went to dessert at the girls’ favorite place in Portland, ‘Papa Haydn’s. It was a month ago. We both agreed, ‘That seems so long ago.’

In one summer we watched our son Phillip graduate from BYU, were blessed with Catherine and Kris’ wedding and I had a planned surgery on my leg.

2 weeks after I was cleared for all activity by my Doctor, Mary’s AVM bled.

It seems like a distant memory when I look at Phillip’s graduation photos. The disk of Catherine’s professional wedding photos was finally completed while Mary was in the hospital. I still haven’t had time to look through all of them yet. Sorry Cath!

But I would not trade this summer for any other! It ranks near the top. I have had the great privilege of spending nearly every hour at Mary’s side. We have actually had a lot of fun! Of course there have been many tears and many trials. But we have learned more about each other in these few months, than we have in 20 years.

Every day has felt like a full week. For the first time in my life, it seems as though we were granted more hours in a day.

I am so grateful for time.

Touched by an Angel

In the short weeks Mary had been home from BYU, I felt her sense of loss. She had finally started to enjoy being away at school and then the year ended. Her closest pal and sister Catherine, was now married and would be several states away all summer. She would be leaving the next day and I felt anxious for Mary.

36 hours before Mary was ill, we all went to dessert in Portland. Catherine was in town that week. Mary was a nanny for the Alders and so we took all of their kids with us! Catherine’s friend Lauren and cousin Allison joined us.

As we all hugged goodnight, I whispered into Lauren’s ear, ‘Will you please be Mary’s friend this summer?’ Lauren smiled and readily agreed. She and Mary made plans to spend the evening of June 19^th together.

That fateful Saturday, Lauren tried texting and calling Mary to firm up their plans. After no response, she called me to see why Mary wouldn’t respond.

I was in the kitchen with Mary. I had just found her at home~alone. She was confused, in pain and unable to communicate. Lauren was at our house within 10 minutes. She drove Mary and I to the ER.

From that night on, Lauren became an important part of our lives. She brought food, checked in daily, sat with us in the lobby and with Mary. After about 12 nights, Lauren proclaimed, ‘I’m ready to stay overnight with Mary.’ We were so grateful. We had all taken the night shifts. We were so grateful for this chance for her to stay with Mary, so that we could all sleep at home together.

Her devotion continues. She has spent her summer hanging with Mary and our family. She has made dinners, spent the night, and been like a sister to her.

Lauren will be a forever friend to Mary and our family.

Lauren & Mary

The Social Network

I was not a big fan of Facebook. I had a Facebook account, but only under pressure from my older kids. I have no clue how people manage to find so much time to spend online!

But now I have a new perspective on it. For almost all 500 million users, it’s just a fad. For Mary, it was the perfect tool to connect her with ‘regular life.’ All of her friends were just like her~away for summer. She was able to stay connected.

Facebook, saved Mary’s summer.

On July 3, Mary came home from the hospital. On July 5, we let her use her computer. The bright screen and overstimulation kept her on for just short segments.

The first time Mary logged on to Facebook that week, she had over 600 messages from well~wishers! She was determined to respond to each and every one. She worked on that for a few weeks. *She also hand wrote thank you notes to nearly everyone who sent a single card or brought something to her.

Phillip, Catherine, Mary~5th generation BYU Alum

Mission Impossible

From the first week that Mary really ‘woke up’, she had one goal and one goal only: return to BYU this fall.

I remember that first night in our 2^nd ER, we met Dr. Shanno. I asked him, ‘So you actually are a brain surgeon?’ Yes I am. ‘Will my daughter be able to return to college this fall?’ I hope so.

As her illness grew more serious and our lives came to a halt, I never asked the question again. It wasn’t my #1 goal. But as Mary grew stronger, it was her only goal. She would tell us over and over again, ‘I am supposed to go back to BYU this fall.’ Many times a day~for many weeks.

We would listen and be supportive without giving any definite opinion or input. I would not let myself look beyond the goals of a single day. But I would not take away her faith and hope in that possibility.

A few weeks ago, Mary and I were in the car and a song came on that seems to be her theme song, ‘Just the Way You Are’ by Bruno Mars. I almost held my breath with this thought: ‘Why can’t we find some creative way for Mary to return to school?’ It seems that we hear all the time about universities rising to the challenge to help students reach for their dreams.

And so the chain of events began. Her recovery was in hyper speed. We watched her progress leaps and bounds within a single day. Her therapists began to see that school could be possible. Her surgeons said that it would be good for Mary to have an opportunity to get back to her normal routine and life at school.

After several days of discussion and support from BYU, Mary will be returning to class this fall. 2 classes to be exact! It will be a trial run of how well she can manage.

I will go along and stay for a few weeks to shadow her and observe. Catherine and Kris will live close by as well as Erik. Her cousin Lindsay is only a few minutes away.

I will have my phone with me 24/7, and I’m sure my heart will jump whenever it rings. I may not sleep or relax for a while until I feel that she has successfully adjusted back to her independence.

This is a big leap of faith for me. Mary knew that she was going back to school all along. Her faith and courage has taught and inspired me to believe in the impossible.

Refiner’s Fire

‘I’m a different person. Do you believe me? I really am different than I was before.’

Those were the first words Mary spoke to us and she repeated them for many days. She still reminds us. But we know Mary now, as the ‘New Mary.’

She is more loving. She is more comfortable sharing her feelings. She is happier : ) My best friend Sharon said about this early on in Mary’s recovery, ‘…to see your sweetness, vulnerability, strength and humility come out from that private place you keep inside your brain is wonderful and inspiring.’

A friend said to us a few weeks ago, ‘When you face death~it changes you.’ Mary’s life was abruptly interrupted. We all had an opportunity to regroup and look at our priorities. Our family had a singular goal and each of us rose to the challenge!

Thomas was our last miracle around here. Born 7.5 weeks premature at only 2 lbs. 4 oz., it was a refining time for me as a mother and as a person. I would sit holding him trying to get him to eat for hours, days and months at a time. I convinced myself to learn one thing~patience. I knew I needed to be a more patient person.

I guess I was ready for another crash course! I needed to be reminded to live my life focusing on the ‘who,’ not the ‘why’ or ‘when.’

I needed to develop a stronger relationship with Mary. I kept feeling for many years that I was failing at really getting to know her and to truly love everything about her. She was almost 20 and it felt like time was running out.

I needed a great opportunity to be a better Mother to Mary.

Be careful what you wish for! Mary and I have not been apart except for a few hours, since June 19. We have talked about every possible aspect of our lives. We have laughed and been silly; sometimes we have cried and been pretty upset.

But Mary’s determination to get well and to triumph over this ordeal, was inspiring to me.

Now I can be in a stressful situation and I won’t get frazzled. I can face disappointment and try to see the silver lining. I can have concern and fears, but try to get through it with faith and hope.

‘I am a different person, Mary! I really am different than I was before. Do you believe me?’

Mary’s new motto

Left scan~AVM is the upper right cluster (4-5cm by 2cm in diameter)

Right scan~Mary’s brain with AVM (large upper right white spot)

“All I Want For Christmas is…”

Mary still has to have Cyberknife surgery to ‘kill’ the AVM, which caused her hemorrhage. The plan is to do the procedure as soon as finals are done, around mid-December. She will have a CT angiogram and an MRI to give the surgeons a 3-D visual of the AVM. They will view it in full detail and will discover exactly how much radiation to deliver.

Our hope is that it will only take one low-dose procedure. She will then be able to rest at home with only minor discomfort for 1-2 weeks. If all goes well, she should be able to return to BYU for winter semester.

They will do another CT scan or MRI at the 6 month mark to see if it is shriveling up. Eventually it will become scar tissue and she will be free from any future risks from the AVM.

Her greatest challenge continues to be the loss of taste and a regular appetite. These are controlled in the left temporal lobe. It should improve over time. She tries to stick with bland foods including rice, mashed potatoes, cereal, some fruit and protein drinks. Also thank goodness for Jamba juice!

Mary is a walking miracle. Would it be too much to hope for her to be able to enjoy food again, someday soon? She is living proof that anything is possible.

Always grateful,

Peg and the Fam

Mary~7 weeks out

2010-11-12T17:28:00.001-08:00

Sympathy Pains

Phillip texted us, and asked, ‘Has Mary had some pretty bad pain the last hour?’ We gave each other that look~Whoa. Yes! She had been struggling that whole day with pain. Meds wouldn’t dent it. She couldn’t sleep. Phillip said, ‘I’ve had a bad headache for the last hour. I kept thinking Mary might be in pain too.’

When Mary was in tremendous pain for many days without relief, a friend sent this wonderful idea:

“I wish we could all take shifts to absorb pain for you... I'd sign up now if it was possible.”

All of you did take some of her burden on your shoulders and in your hearts. In so many ways. Tears~prayers~texts~emails~cards~packages~messages. Mary is still amazed even today, to hear about how many people were and are still cheering her on.

My Summer Vacation

One Sunday afternoon while Mary was in the ICU, Brad and the girls took over the 'Mary shifts.’ I came home with my sons, Phillip and Thomas. It was a beautiful summer day! Perfect blue skies with a few white, puffy, ‘Toy Story’ clouds. The boys took me out our backyard gate onto Salmon Creek. They took me on a long leisurely canoe ride. Thomas paddled in front and Phillip in the back. I sat in the middle of my 2 strong sons and had the best 90 minutes of my entire summer! It was so peaceful. There was no one in sight. We had relaxed, fun conversations. They showed me all kinds of great scenes along the creek. It felt so refreshing to have personal time with them, in such a beautiful place. We looked up at the house from the water and Phillip said, “I love being home, Mom!”

My sons might not realize how secure they made me feel that day. I felt as though all my cares and worries were gone. I felt as though I had a real vacation, far away.

view of our home from the water

Phillip

Thomas

Parenthood

Mary’s Nana and Grandpa wanted to come up the day we called about Mary. They slept with their suitcase at the foot of their bed for that whole week. Painfully, we put them off until a week in July. I knew that I would need full time help when Brad and Thomas would be away at scout camp. I was right! Nana slept right in the room next to Mary's. I got some great sleep that week! She was also with us when Mary had some disappointing news from the Dr. She truly needed both Nana and myself to help her get through it.

Three years ago, my parents moved less than a mile from our house. Brilliant move! They have been here watering plants, bringing food, doing errands and checking in. Sometimes, they follow a prompting and just stop by. One such day last week, they came in from watering. Mary started a difficult conversation about the looming possibility of not returning to BYU this fall. I usually am the only one with Mary when this topic heats up. But this time, I slipped away to rotate laundry and let her grandparents help her through the painful conversation.

It is such a blessing that Mary has 4 grandparents alive and well. They are here to guide, direct and love her along with us. Brad recently summed it all up with his parents, ‘This has been the toughest parenting we’ve done so far.’

A house needs a grandma in it. ~Louisa May Alcott

Thomas, Nana & Mary

Mary & Grandpa Bigelow

Mary & Grandma Bigelow

Patience is a Virtue

Today we were about to pull away from a parking spot when my drink spilled in the new car on the shifter and into my lap. It was a ‘hole in the wall’ place with no cars waiting nearby. Mary hopped out to get a towel from the trunk. I guess our pause to clean up was too long. An impatient Jeep driver laid on his horn and revved his engine as if to say ‘Move it or I’m running you over!’ He had 30 feet of exit space and no one behind him! Seriously? Wow.

I have been striving to encourage Mary to have patience with herself and every step of this ordeal. But ultimately, I am learning of it’s value just as much as she is. Mary had a really tough 10 days during the ‘earthquake vision’ cycle. Two inspired men from church gave her a blessing one night when Brad was away at scout camp.

In it, Mary was counseled to practice patience. As she does, she will look back and see great progress made. Many times that next week, I would need to remind her of that promise and encourage her to be patient. The more patient she became, the more progress she made. A close friend gave Mary an article about this when she needed it most:

‘The lessons we learn from patience will cultivate our character, lift our lives and heighten our happiness.’ Dieter F. Uchtdorf

When E.F. Hutton speaks, everyone listens!

When Mary says, ‘Mom~there is something I have to tell you’---I listen! She is so in tune with everything right now. It doesn’t matter if it’s a reflection on what happened the day before, something she has finally understood, or what sounds good to eat! I am all ears. *I keep telling her that if she has any great stock tips, please, let me know!

That whole week when she was struggling with vision, heartburn, no appetite and other hemorrhage induced symptoms, she was never more sincere. She would consistently let me know that she was sure that even though this was tough, it was all a good sign. She felt so strongly that when she had her next CT scan it would show her hemorrhage was all gone.

It had only been 28 days. I listened and I wondered if it could be true? The night before her next CT scan she insisted again, ‘Mom, I have to tell you something. My blood clot~is gone.’ You know what? I believed her.

If you want some insight about yourself or anything else, for that matter, spend some time around Mary Goodwin!

Mary at home

Spoiler Alert!

I have learned that my #1 job until Mary is 100% recovered, is to be her advocate. Everything else has to wait. I had to become ‘Mother Bear’ to get some needed attention for our brain trauma patient stuck here at home. Once Dr. Shanno found out how long she had endured this latest round of symptoms, he called us. It was the same night she received that blessing here at home. He asked us to come see him in the morning and ordered a CT scan.

Mary was so excited! She could hardly wait for the results. When Dr. Shanno walked in the room he calmly declared, ‘The blood clot is nearly gone.’ Mary practically jumped up with joy and tears! Nana and I were in disbelief! He put the scan up on the board. It was unbelievable.

Mary said, ‘Does this mean I can have the CyberKnife surgery sooner?’ ‘Yes it does.’ You would have thought we were on our way to Hawaii. Pure joy. As we walked out to the car, Mary declared, ‘I am on cloud 12!’

Day 33 on the left (hemorrhage is nearly gone) Day 7 on the right (massive hemorrhage takes up space; mid-line of brain is off center) *CT is a view from base of skull up; hemorrhage is actually in the left temporal lobe

What are the odds?

Dr. Shanno has been more blunt with me lately giving me the plain truth about what Mary has been through.

An AVM is flat out super rare. Less than 1% of the population is born with an AVM. Less than 1% of those people ever have that AVM bleed. *Brad and Phillip did the math and came up with some crazy statistic. Ask them!

When an AVM bleeds, 10% of those people die. 30% are left with a permanent disability.

Mary had a massive hemorrhage in her left temporal lobe, due to an AVM bleed. Mary could have died. Mary could have slipped into a coma.

On day 3, Mary ‘woke up’ and spoke for 7 hours straight. She came home on day 14. Her hemorrhage was resorbed by day 33. She only has a headache about once every other day now. For the past 2 weeks, she rarely has shaky vision. She has beat some very impressive odds! Maybe she should buy a lottery ticket…

Hot Tub Time Machine

I am so grateful that Mary had this in the United States, with health insurance, and with the incredible technology and skilled physicians of today. They let me be in the room with Mary last week during her CT Angiogram. They put the weighted protective apron on me and I stood near her feet. She had an IV in her arm and they administered about 1 cup of contrast dye into the vein. This special scan will give the CyberKnife surgeon a 3-D film of her brain and AVM.

The giant scan machine looked like a hot tub, on its side. The round center was hollow. Mary was on a narrow bed like a diving board into the up-ended ‘hot tub.’ Because they take pictures that view the brain in segments, like slices of bread, the bed she was on would move. It would take turns moving her in to the center of the machine or out. It lasted about 4 minutes. For the last few seconds, she was told to not breathe or swallow. She was super calm and relaxed.

It was the coolest thing ever! I wanted so bad to snap a photo, but I refrained. Her technician has done this for 20 years. She marveled at Mary’s condition considering what she has been through.

Days are like weeks and weeks are like days…

I was filling out a form and I asked the cashier, Is it July 5^th? No, it’s the 15^th. What?! Mary and I both cannot believe how much has happened in 6 weeks. Mary says, ‘Mom it seems like it all happened so many months ago.’

I feel no pressure regarding time or the calendar. I have felt peace and confidence that Mary will fully heal at the rate that is meant for her. This has helped me to be patient and allowed her to feel confident.

Mary continues to meet with her speech therapist working on all kinds of cool cognitive exercises. I take notes, but I also try to follow along and do the exercises in my head and I can’t!

*Ask her to recite a 12 word sentence backwards. Or do a 3 digit multiplication problem out loud, with no paper! Or translate a random paragraph into French. Repeat 4 sets of 2 digit numbers and then list them backwards.

Mary was finally given the ok to return to cardio workouts at the gym. Happy girl! I guess that means I get to work out too...

She meets her CyberKnife surgeon, Dr. Modha, on August 12. Until then, we will practice more patience!

New Moon~1 month anniversary!

2010-11-12T17:22:00.000-08:00

Think About a Thank You

Imagine having your daughter’s doctor also be her Bishop. Talk about efficient care! Mary has had great personal care from her doctor. We had the additional blessing that the neurosurgeon who specializes in her illness was on call that late Saturday night. These experts spent years preparing to save people like Mary.

My goal was to record every nurse's name that worked with Mary. I cannot say enough about how wonderful her nurses and CNA's were. Amazing. Most of them helped Mary through some very dark times. Some made the difference between peace and anxiety for not only Mary, but for each of us.

Kudos!

Denise--1st Legacy Triage nurse; David (ambulance tech on route with Mary and I) who stayed with us for an hour; Tad--Mary's 1st nurse 3 nights in a row.

Cindy, Cate, Kay, Jayde, Barbara, Andrea, Andy, Dan, Yelena, Olya, Amber, Amy...I'm forgetting a few.

Some nurses gave me great advice in those first days when they could see ahead for me: 'get your sleep, let others help you...'

The CNA's, who are paid far below their value, were often the most comforting to Mary:

Rachel, Kimmy, Kim, Whitney, Sofie, Virgi, Vladimir, Alesya, Dixie...brushing her hair, held her hand, laughed with her, helped her get in and out of bed, fix her lines, clean her messes, change her bedding.

It is quite unfortunate to hear that the ICU has lost the CNA staff. Starting the week after Mary was discharged, they are no longer assigned to the ICU patients. There has got to be a smarter way to save a buck.

Kimmy & Mary, ICU CNA

Mary & Rachel, ICU CNA

Mary & Cindy, ICU RN

Super Computer

Brad graduated in computer science. He used to tell me about Super Computers and how they would fill entire rooms. In just a short decade, nearly all of technology has rapidly adjusted from huge to minute. What used to fill an entire room to run complicated systems, can now fit in your palm. There still are Super Computers, but nearly all of technology has adapted, improved and excelled with time.

Mary’s brain is a ‘Super Computer.’ We started seeing little signs of it when she was much younger. Her soccer coach at age 5 told us that Mary is left-footed. She’s right handed, but to be left-footed (along with super fast!) in soccer is a huge advantage. Age 8 she began learning French in the mornings at her school. She has spoken French ever since. During her high school years, we realized she may be close to having a photographic memory. She had the lead role in 3 school plays. After 2 weeks, as we would review the script with her, we realized she not only had her part memorized, but every other part!

This last semester at BYU she was struggling with her political science class. The professor gave each student a copy of the previous semester’s final exam to prepare for the final. Mary called me: ‘Mom! We get to study the previous final! This is perfect for me. I will just memorize the whole thing.’ 225 questions~memorized~in 2 days. She got a 92% on the final.

Because Mary was born with an AVM in her left temporal lobe, her Dr thinks that her brain had to adjust from the beginning. This AVM took up space and so the other sections of her brain may have taken on some of the temporal lobe’s functions. This may be the reason why Mary was able to speak so well, so quickly. He reminds us that this was a ‘significant bleed and the blood clot is still large.’

Her brain is a Super Computer. It has adapted and adjusted to the AVM for the past 20 years. While the temporal lobe heals, the rest of her brain is helping to perform those functions. That’s the science of it.

Or...in other words, it’s a miracle.

Non-Fiction

Once upon a time, there were 2 young boys, ages 5 & 6. They grew up together in the same town, attending the same schools and church. They shared all the same interests. They both became high school drum majors. They attended the same university. Their wives became friends. After college, they all ended up living a few minutes apart in the bay area of CA. They had their first babies, who spent years enjoying the same parks together. Their next babies were born in the same hospital a month apart. Then they had career changes and moved apart, 1000 miles from each other. But the friendship continued as best it could. 19 years later, those 2 girls born so close together, would become best friends. They were accepted to the same university that their fathers and mothers attended. They shared the same whacky sense of humor that their fathers also share. They helped each other have a fun first year 800 miles away from their homes. And then Mary came home for the summer. And then came June 19, and 30 more life changing days.

Imagine how happy Mary was to see Hannah, on her front porch last weekend! What a wonderful surprise. There is no better ‘medicine’ than a friend. This challenging week really did have a happy ending for Mary.

Mary & Hannah

Head Games

There is an unsung hero hanging around here. He has been in the shadows for much of the past month. He was ‘passed’ around from family to family. He didn’t see much of us or Mary in the first few weeks. But he has become a vital part of Mary’s healing process.

Thomas is only 13, but he has taken on some important roles. Mary has weekly speech therapy and one assignment is for her to do 30 minutes of online therapy work everyday. Thomas is her coach! He helps her understand the process and answers questions. He reports to us and to her therapist on her progress and struggles, if any. This allows one thing to be off of my ‘plate.’ But more important, they’re getting closer as they work together. Sibling rivalry became teamwork. Problem solved!

Think you’re so ‘smart?’ Try these:

http://www.lumosity.com/

http://www.happy-neuron.com/profile/

Mary & Thomas therapy

New Moon

Mary is doing great. Let me start there. Everyday we remind each other of how many wonderful blessings there have been from the very first day. She beat tough odds. It could have been much worse!

But, this past week brought new challenges. Several episodes a day of ‘shaky’ vision: ‘Mom. There’s an earthquake goin’ on with my eyes.’ More pain but pain meds not working for a full dose. Increase in heartburn: ‘Be honest. Am I going to throw up?’ Feeling exhausted, but not being able to fall asleep. So we adjust. We get creative. We find new ways to give relief and still have some fun. It is not hard to have fun with Mary!

She is working hard to get well. Sometimes ‘working hard’ means she has to nap. Or choose eating over talking. Or get to bed at the early hour of 11pm! Or eat when she is not hungry. Or miss church~again. Or have to cancel a visit because ‘there’s an earthquake in my eyes!’

But Mary will get well. She will beat this. Did you ever see her on stage? Did you ever see her play soccer or run a race? Have you ever joined her in a debate? Just watch her! She’ll be the ‘Female, age 19; less than 1% of the population with an AVM; less than 1% of those, who survived a significant bleed in the left temporal lobe; and not only lived but recovered 100%.’

“Go Mary! Go Mary! Go Mary!”

Mary Day 26~July 14, 2010

2010-11-12T17:11:00.000-08:00

‘Mom. It feels like June 19 all over again.’

We all thought Mary would be ready to attend church this past Sunday. On the way to church, she, Phillip and Jessica even joked about her condition. As we walked in, she expressed a little nervousness about seeing a lot of people. We ‘flanked’ her on all sides and quickly found a pew.

If you know Mary, she can be a good ‘actress.’ She tried to tough it out the whole meeting. I watched her every move. She closed her eyes a lot. (Turns out she was praying to feel better in those moments). She was having vision problems~it seemed like everything was bouncing around. She was in pain. She could not focus on any of the words. She doesn’t remember anything that was said.

After 40 minutes, we moved to the quiet foyer. But after a few visits with passersby, she had her head in hands, some anxious tears and she could not speak correctly. A friend raced us home. The florescent lighting, the loud noises, music, speakers, pressure to greet and visit, all were too much, too soon. Also, it could have simply been just a random 'bad hour.'

It’s about time!

Now we find ourselves in the part of recovery that I worried about the most. The ICU was actually predictable, self contained, and felt safe. Now that Mary is home, we face new challenges and we sometimes feel pretty vulnerable. She has ups and downs several times in one day. She will be fine and feeling great and within a few minutes, she has intense pain. Even with her excellent pain medicine, it takes 30-60 minutes for it to kick in. She could have headaches for up to several more months. This will improve over time. Mary’s brain trauma has affected her appetite. She feels full all the time. Nothing is as appealing as it was before. Much of my energy in a day goes toward her calorie intake. This too will improve over time.

One reason we don’t have a lot of visitors yet, is that Mary feels the need to ‘entertain’ when people are around. She won’t stop talking. She may not even realize she is in pain or that she needs to eat or drink. She gets tired more quickly when she talks to people. If you arrange a time to visit with Mary, keep it to about 30 minutes. Be flexible in case she doesn’t feel well. Try to find ways to be the one doing most of the talking, and let her listen.

‘I’m fine!’ Or in others words, ‘Are we there yet?’

Mary loves to text, email, write thank you notes, and be on Facebook. These are all excellent tools for Mary and they help her to pass the long hours at home. Be aware that looks can be deceiving though. So can Facebook posts. Of course she can’t drive, work or even be alone at all yet. But she really does feel pretty good much of the time now. It’s the 3-4 times a day she doesn’t feel ‘fine’, that you may not be aware of.

If you broke your leg, you would have a clear path of the healing process. Get an xray; get a cast; X number of weeks to heal; get another xray; cast removed; yeah! Go swimming! All better. The brain does not heal so quickly nor in such a precise way. The left temporal lobe controls many important qualities: spoken language, processing of language, comprehension, any foreign language, reasoning, logic, and cognitive skills.

Mary really is doing remarkable. But she is still healing. She is on a road to recovery. One big challenge is that no one knows for sure the exact end to all of this. She would like to know when that day will come. She told Dr. Shanno last week, ‘I would like to know the day and time that this will all be done.’ So would we Mary! So would we…

What are your plans this summer?

Mary & Maggie

Mary is encouraged to go on long walks. We walk every morning, 6 days a week, 3-5 miles. She can go lay out at the pool and get in the water (with someone!). We have gone to a movie. We have gone out to eat. We try to do 1 thing fun each day!

In early August, she has another CT scan to see if the blood clot has completely dissolved. We meet with her surgeon. When it’s all clear, she will have a procedure called ‘Cyber Knife’ which will ‘kill' the AVM that caused this bleed in the first place. Then every 6 months for 2 years, she will have a scan to track it’s progress. After about 2 years, the AVM should be ‘dead’. In the meantime, most of her symptoms should gradually improve. Her speech and cognitive abilities should also be almost at 100% within the next few months.

Lights! Camera! Action!

Our family loves movies. I can tell you the first movie each of my kids saw from oldest to youngest: ‘Ghostbusters’, ‘Little Mermaid’, ‘Beauty and the Beast’, James Bond’s ‘Tomorrow Never Dies’. Many of the sub-titles in these email updates have a movie theme! Eventually, Phillip would like to make a short film about this amazing event in Mary’s life. She will play herself!

Phillip just graduated from film school. He loves to relate life to running a film set. While he was here these last few weeks, he said, ‘Mom, you are like the Director and you need us to be the Assistants to the Director.’ And so, everyone ‘plays a part’ and the scenes are still unfolding.

As the credits roll by, no one part has been too small. Each of you has had an important role:

Emails~flowers~cards~prayers~fasting~calls~treats~texts~helping with Thomas~helping with dogs~weeding our yard~watering flowers~ packages~traveling long distances to help us~teaching my Sunday class~errands~helping Brad car shop~loaning cars~cleaning my house~laundry~Costco runs~and the credits continue on…

Phillip & Jessica, BYU graduation April 2010

Above and Beyond
Can you imagine such young people dropping everything in their lives to be here and help us for so many weeks?

Lauren is a close friend of Catherine and Mary. She drove Mary and I to the ER June 19 and has seen all of this with wide eyes and supportive arms for such a young woman. She even took a night shift at the hospital so we could have a night at home together. She has also been our 'Nordstrom Spokesperson' for Mary, hoping to bridge the gap until she is able to work again.

Catherine, Lauren and Mary 2 days prior to Mary’s hemorrhage

Catherine was back here on a plane 48 hours after having just visited us. She left her newlywed husband, Kris, and life in CA, came up here, and did not leave my side for 96 hours. Day and night. She helped me to sleep. She loved Mary like a mom. She managed my cell-calls and texts. She gave updates to friends and family. Kris was able to be with us for a weekend, and was happy to share Catherine with us for 9 wonderful days.

Mary & Catherine, May 1

Phillip and Jessica left their jobs for nearly 3 weeks to be here. They took night shifts, met with surgeons, read CT scans, did 40 loads of laundry, 20 loads of dishes, cleaned the whole house, tracked Mary’s progress and worked as long as I did each and every day. They even took Thomas for a long weekend to Jessica’s work retreat. It was at a private ranch in eastern Oregon. He had a blast chasing cows in the money grab, watching live rodeo and demolition cars, and camping. It will have been a highlight for Thomas in this unexpected summer.

Phillip & Thomas

Phillip & Jessica

My sister April is a charge nurse at SWMC. She was able to provide us with knowledge and comfort over and over. She stayed overnight several times with Mary to give us a break. She even stayed overnight with us for Mary’s first night home. She was a familiar professional face to the staff, which
sometimes gave Mary more than ‘just another patient’ status.

Peggy's sister, April

Each one of you has had an impact on our family and on Mary in some way. We are so grateful for your love, support and kindness toward us. This whole event has shown us what we are made of and where we stand. It has brought us closer together than we ever were. We are different than we were June 18. I hope you feel the same, even in some small, simple way.

More to come~

Peg and the Fam

May 1, 2010 The Goodwin Family

Day 14~AKA ‘Milestone’ July 4, 2010

2010-11-12T17:06:00.000-08:00

Wait--What happened?

Mary finished her freshman year at BYU in Provo, UT and was eager to land a great job for the summer. She needed to save enough money to augment a part time job in the fall, and to prepare for study abroad in France next spring. Not a great year to find a summer job. But Mary was persistent. After 2 interviews and a month of patience, she was hired to work at Nordstrom. Not too shabby! Great hourly rate and commission on top of that. She was so excited! She has also been a nanny for several families in our area and with both jobs, she would be able to reach her goals.

Friday June 18 9pm~Mary finished up a 72 hour nanny job. She watched a movie here with us. We hugged at midnight and looked forward to her first day at Nordstrom in the morning.

Saturday June 19 9am~Brad and I left for the day. I had a reunion. Brad had to prepare our trailer for our upcoming reunion in CA and had a lighting director assignment for a concert in Portland.

9:20am I talked to Mary on the phone: ‘Mom I have to hurry. I’m late.’

9:30am Mary printed off a map and directions to her Nordstrom training in Portland.

9:31am Mary had sudden extreme pain in her left temple area. She could barely stand up. She went back to lay down in bed.

4:45pm I arrived home and saw her car still in the garage. Odd…maybe she came home early? Maybe she lost the job? I found her sound asleep in her sister’s bed. I stood at her side and looked at her. She was out. I decided to run 1 quick errand for Father’s Day.

5:35pm I texted Mary and reminded her we had 2 graduation parties to attend.

5:45pm Mary called me: ‘Mommy. I threw up. Will you help me?’ I had a lot of questions including ‘What about your job? Did you go today? Did you call them?

6:00pm I arrived home and found Mary, head in hands in the kitchen. She could not communicate except for, ‘Shhh Mommy. Shhh.’ I was unaware that there was a serious problem for 10 minutes.

6:10pm I had a strong feeling that I should stop and listen to her. Ask her some questions: Mary. Where do we live? ‘Vancouver.’ What is your dog’s name? ‘2.’ What holiday is tomorrow? Fourth of July. Ah-oh! Something was very wrong.

6:15pm I called Brad and he didn’t recognize my hysterical voice. He said to get her to the ER.

6:20pm Our friend and Bishop, who happens to be Mary’s primary care physician, arrived at our house. (He lives 2 minutes away and Brad called him.) We couldn’t figure out what was wrong but it appeared she was either sedated or having a major migraine. She mixed up words ie: ‘I don’t want to go to the library!’ (hospital). Mary started to fade away.

6:30pm We headed to Legacy Salmon Creek ER. My dad met us in the waiting room.

7pm After confirming that she was not a teenager who has OD’d, the ER Dr ordered a CT scan.

7:30pm As the scan came up on the monitors, I could see a large oval shape on the left side of Mary’s brain. Not good. One tech says to the other ‘Do you see that?’ He nodded. I asked, ‘You can’t say anything to me, correct?’ ‘No, but I will tell you that she will be transferred to another hospital for sure.’

8pm the ER Dr ran to the room before we arrived back with Mary. She grabbed my shoulders and said: ‘Things are going to get really crazy now. Mary has an AVM. Just remember it sound’s like ‘ATM’. It is a cluster of unnecessary blood vessels in her brain. She was born with it. One of the vessels has burst and she has a large blood clot there now too. The only surgeon who specializes in this is at SWMC. You are so lucky! He is on call tonight and he will meet you in the ER when you arrive. Also, the ambulance will have on sirens and lights so they take you right in without delay.’

11pm we arrived at SWMC ER. There was a huge team of doctors and techs. The ambulance techs stayed with us and Mary for an hour. Brad and my family arrived. While they worked to stabilize Mary, we saw a friend standing near the room next door. He had a church friend in there who had just suffered a heart attack. Age 35. On Father’s Day. We sadly learned later, he passed away about the time Mary was stablized.

12pm. We met Dr. Shanno, her neurosurgeon who had just finished another surgery. He explained a plan and promised to meet with us in the ICU the next morning.

1am Mary was in her room at the ICU. I stayed the night. Brad and family headed home.

It’s not brain surgery!

~Mary was born with an AVM (arteriovenous malformation) in her left temporal lobe. We had no idea she had this. You usually don’t know you have it unless it bleeds. It is not genetic.

~One of the vessels in the AVM bled for approximately 10 seconds and immediately formed a clot the size of a business card. This could have been fatal.

~Because of the location of the AVM, after her angiogram, they discovered that surgery is not an option. The carotid artery goes right through there as well as other vital blood vessels. Surgery would be far too risky and can only be a last resort.

~Mary spent 12 days in the ICU and 2 days on the floor. Managing her pain and keeping her vitals stable were the goals.

~Her Dr’s said ‘Once she gets to day 14, we will breathe easy.’

~She still has the AVM, the blood clot and swollen tissue. It will take up to 6 more weeks for the blood clot to resorb. The swelling reached it’s peak around day 13 and has began to subside.

~She will have another CT scan in about 6 weeks. When the clot is gone, she will have Cyber Knife radio surgery (sounds like a Star Wars procedure…) It is all exterior and will ‘kill’ the AVM. If this procedure appears successful, they will also perform an embolization to the area which will prevent any bleeds of the AVM. Even after the radio surgery, it will take up to 3 years for the AVM to ‘die.’ There is a 4% chance of another bleed every year until the AVM is gone.

*With most brain AVM’s, the surgeon is able to surgically remove the AVM and the blood clot. This was not an option for Mary.

Hallowed ground

When you walk into Mary’s hospital room, you immediately can sense that you are in a special place. Even when she has been in agony, she almost always finds a loving or complimentary thing to say: ‘You are so beautiful. You are amazing. Your skin looks so good. I love you~do you believe me? That I love you?’

Even today, spend just 15 minutes with Mary and you will walk away a happier, better person. You will laugh and you will feel ‘verklempt’ at least once. Mary is now sweet, innocent and without guile. She has experienced a sort of 'hell' in this ordeal and came back to us angelic.

Selective Memory

The location of Mary’s AVM and blood clot controls all of her language skills. It has been a wonder to us how Mary does not remember certain words or people’s names, yet she can still entertain us with impersonations and recall actor’s names and details of movies. We were quietly discussing a new release in her room and she perked up and said, ‘Oh! Knight and Day. That movie was just released a few days ago.’

She still has trouble with vocabulary and some names. Today she couldn’t remember ‘pillow’ or ‘deck’, ‘text’ or ‘gum’ (‘You know, the small shape you put in your mouth and go ‘chomp-chomp’?) And yet…in the throws of agony, once when I was desperate for any way to give her some comfort, we tried to help her visualize someplace beautiful and relaxing. Hawaii. I was weak and told her that when she is all better, we will take her to Hawaii to celebrate. She reminds me of that every day!

Miracles On ICU

I do not profess loudly. I am quite discreet (publicly) about my political and religious opinions and viewpoints. However, I would be a hypocrite if I did not tell you that we have witnessed 2 miracles within 2 weeks.

Mary should not have survived her AVM bleed. Her doctors would say, ‘We look at these scans and we look at her. As bad as she is, she does not even come close to the severity of the situation. She should not even be conscious, let alone able to speak.’

Mary has almost total recall of not only what happened the day of the bleed (any neurosurgeons interested in amazing details of an AVM bleed?!) but also of her life before. Certain words and some cognitive abilities are not clear yet, but with therapy and time, they expect a full recovery. Mary survived!

A few days ago, Brad called me and said, ‘I’m OK…’ Not the words you want to hear when your life has already been turned upside down. He had been rear ended by an SUV going 45mph on Hwy 14. He was pushed to the concrete Jersey barrier and went on 2 wheels along that. He then went 100 feet, pushed under the rear of a small pickup truck. She was uninsured. Brad survived! Not even a sore neck. “Miracles happen everyday, change your perception of what a miracle is and you'll see them all around you.”

There’s no place like home…There’s no place like home…

Wednesday night Mary slept more than a few hours, for the first time. Thursday Mary got up and walked a few laps of the 7^th floor. Friday afternoon, her Dr’s recommended discharge to home instead of ‘in house rehab.’ She is high level functioning: she can walk, climb stairs, brush her teeth, get dressed, feed herself…etc.

What she does need is out patient therapy for speech and cognitive skills. Her doctors want her to rest, sleep, nap and thrive in her own home.

In a recent post, we asked you to continue to pray for Mary to just have relief of her pain. Mary’s pain began to decrease once she was able to get some sleep. She can go several hours longer than before without a pain pill.

Friday July 2, (Also known as Day 14)

3:00pm~With 2 nurses at her sides, Brad and I asked Mary: ‘If you could go anywhere right now-anywhere you wish-where would that be?’ ‘Home.’ ‘Okay! Wish granted! We’re going home right now!’

With sincere thanks to all of you~Peggy and the Fam

*Mary will begin out patient therapy this coming week and meet with her Dr.

Lucky Day 13~July 2, 2010

2010-11-12T17:01:00.000-08:00

Groundhog Day...

Every morning I wake up and for a few seconds, I have that groggy feeling of, 'Wait--did that really happen? Oh yeah. Mary is in the hospital.'

Within a single day, we seem to have similar patterns of ups and downs, laughter, tears, intense pain, and periods of calm where Mary is able to converse, watch a show, or eat. One of us will have a great shift with her and another will be exhausted from no relief. Neuro checks are every 1-2 hours (‘What is your name? Where are you? What is the date? Why are you here? Raise your arms. Smile. Squeeze my hand. Release...’) Shift changes are every 12 hours...and so on.

Since June 19, it's been some version of this. Every day.

It's like 'Groundhog Day'--over and over again…

sym·bi·o·sis

About a week ago Mary first began conversing with us and was actually joyful. I felt joyful! Friday she went downhill quickly, went back to the ICU~she lost her spark. I was scared.

For many hours she has suffered and asked ‘Why? Why? Why’. (I have so many questions it wears me out too, Mary.)

Mary got angry for the first time this past weekend. She had not shown any anger through all this pain. But she was mad! Her tone was sharp.

That night as Brad and I crossed the quiet, cavernous lobby to exit for home, I let myself go. I told him my list of frustrations and concerns: New doctor; back in the ICU; pain worse; still no sleep; seizures; I felt angry.

When we got home, we could hear Catherine weeping in her room. She feels as close as I do with Mary. It has been so hard for her to watch Mary suffer. They are only 19 months apart~‘CC and Mimi’.

The next morning as I lay awake, analyzing all of this~I realized that we are symbiotic with Mary. We mirror how she is feeling. Mary! Hang in there! We will ride these waves together.

Sleeping Beauty

7:15am yesterday, my sister April, charge nurse on 3 South at SWMC, checked on Jessica and Mary after her shift. She texted: ‘Peggy-you awake? Both girls are sound asleep!’

Mary had not slept more than 90 minutes at a time since June 18. On day 11, Dr. Le told us she has sleep deprivation and ICU delirium. He said that if any healthy person had not slept like that, they would have similar complications. She needs sleep! But her brain won’t let her sleep deeply; the staff must do neuro checks to track her swelling; and the pain has been far too great for her to sleep.

Tuesday night she slept 8 hours straight!

Movin’ On Up

In the first decade of our marriage, Brad and I moved 9 times.

In 13 days, Mary has been in 2 hospitals, 2 ER’s, the ICU, and 5 different patient rooms. Ask my kids~we are getting really good at packing up the cart and moving our patient!

Yesterday we moved Mary out of the ICU onto ‘The Floor’ (regular surgical patient floor).

Mary with clean, braided hair! (Jacqueline Shirley braided Mary's hair)

A New Mary!

She took her first shower in 13 days! (Try not to dwell on that…) She washed her own hair as I stood outside the curtain. ‘I will do it myself, Mommy.’ I made her talk to me the whole time to make sure she was upright and conscious. Remember, she hasn’t stood up or walked more than a few steps for almost 2 weeks!

She had a 10-minute warm shower and is now a very clean girl.

Mary has very meekly and sweetly told us many times in some of those difficult hours, ‘I am a new person. I am not who I was before. I am going to treat you better than I have. Do you know that I love you? I love you all so much.’

Will she ever realize that we are better because we have witnessed her go through this trial with such grace and strength? Amazing girl.

My Right Hand Man

Catherine was able to come home and visit us for 5 days in June. Kris had training back east so she came to be with us. Mary and I had a lot of fun ‘girl time’ with her! I’m so grateful for that week. She departed Friday evening. 12 hours later, Mary had her brain bleed. 48 hours later, Catherine was back on a plane to be with us again.

She didn’t leave my side for 4 days and nights. She slept where I slept. She listened to the doctors with us. She understands more than we do because of her pre-med studies.

She was able to be here for 8 days. We feel her absence this week and realize how invaluable she has been to Mary’s well being and to us!

Loss of Words

Words seem so shallow sometimes. How can we express the overwhelming gratitude we feel toward each of you? How can we help Mary to realize how much love, support and concern 100’s of people have shared with us~for her?

So many prayers~many of you fasting on her behalf~ emails~cards~beautiful flowers~stuffed animals~text messages~putting Mary’s name on prayer rolls~dinners to the hospital~milkshakes & treats for Mary~rides~Thomas care~priesthood blessings for Mary~sitting with Mary so we can take a break~lunches~care packages for us~facebook posts~phone calls~support from Oracle~helping our dogs~watering our gardens~weeding our yard~loaning us cars!~offers to help~hospital visits to us~taking care of our church callings for us~

We hear, see and read all of your kind words and sentiments. They sustain us. We are given a boost through these simple gestures. We don’t take them for granted.

Sometimes, when I have a few quiet moments, I look through my emails. I read my text messages. Tears fall. I laugh & smile too : )

With gratitude and love~

Peg and The Fam

*We realize many of you would like to see Mary! She is still on limited visitors. She is only just today beginning to take some steps. When she has had consistent sleep and managed pain, we will invite you to visit her! There will also likely be many weeks at home where you will have opportunities to help Mary fully recover through visits and therapy.

Mary Week 2~June 28, 2010

2010-11-12T16:59:00.000-08:00

Phillip, Mary, Catherine ICU Wednesday, June 23
False Start

In all the races that Mary ran, she never had a false start. Mary had the 400m race down to a science. But she was always trying to improve and perform better. If you know track, you either love the 400 or you dread it. It’s tough. Mary learned over time that you begin the race with a strong start. Hold back during the first curve~even though everyone else is pushing ahead. Pick up your stride on the first straight away but don’t give it your full speed yet. As you head into the final curve, kick up your heels and give it 100%! This is where you can almost see the ‘pianos falling’ on the other runners’ backs. They gave it all they had, too soon! They didn’t leave enough steam for the toughest part of the race. On the final stretch kick it up even more and finish strong!
We didn’t have this last ‘run’ quite figured out yet. Mary’s ‘team’ probably pushed her too soon, too fast and she wasn’t quite ready to go into the next ‘curve.’ The most frustrating part is that we are all realizing that instead of the 400, this is actually much closer to a marathon. And don't tell Mary, but we are not even out of the starting blocks yet…
Bonjour ICU!
From the first day that Mary was out of the ICU and on a regular floor, she started to gradually go downhill. We were hopeful at first~she even had a few visitors and ate some real food. Her nurses didn’t need to make their neuro checks as often and she was off of all IVs.
Catherine stayed the first night and it was difficult. Mary struggled with pain, increasing dramatically and by late afternoon she was in agony. We had seen her in pain all week but not to this degree. We took 90-minute shifts due to pure exhaustion. Every minute with her, still, is devoted to reducing pain and agitation. We try cold, heat, ice, massage, music, reading aloud…
On day 2, we escalated our concerns and we were heard. She had a new CT scan. She had a few mild seizures and her heart rate dropped a few times. She was looking worse to us in every way. During that sleepless night with Phillip and Jessica, she was transferred back to the ICU where the nurses could keep a closer watch.
Sixth Sense
A characteristic that is highly sensitized for Mary during this time is her honesty and intuition. Be prepared! She will tell you exactly what she thinks without any filter or sensors on! Sometimes we prepare people and sometimes we just cross our fingers that she won’t embarrass or offend anyone! She is also able to 'read' a person within 3 minutes of them entering her room. And guess what? She is almost always right on! She can sense it by how they interact with her, and even by their simple mannerisms. By the end of a shift, we realize~wow! She was so right!
Fortunately, Mary has truly had amazing care. She is loved by all of the staff. We now can’t walk the halls without a warm greeting and concern for Mary.
We have to be careful about how we are with her too. If she senses for even a moment that we are sad, discouraged, or upset~she senses it and calls us on it.
‘Mom! What is wrong? What is wrong?
‘Oh nothing ~I just have something in my eye...’

Rules! Guards! Fools! OH MY!
Sorry to be blunt, but we all hit a wall yesterday.
20% of my stress every hour of every day in the ICU, is actually trying to simply enter the ICU. There is a desk that is similar to a ‘guard hut’ at a campus or military base. You must check in there. Then put a sticker with your patient’s room number on it. Then the volunteer (bless their aging hearts) calls the ICU nurse. Then they ask for approval for you, the mother who has been here for 8 agonizing days, to enter the gates to go be with her daughter! “And please turn off your cell phone.” Yeah right.
Are you feeling stress in your forehead yet?
Then after they get an answer, they slowly walk around, use their key card, the doors open, and they walk you to the room. AHHHHHHHH!
So imagine if you’ve been in her ICU room for hours and have to use the bathroom, make a call, get a drink or eat? Is it really worth that process above? Just ‘hold it’ as long as you can.
50% of my stress each day happens twice: the ‘changing of the guards.’ Shift change is between 6:30-7:30 AM and again from 6-7PM. Every day. She gets a new nurse and new CNA every shift. Sometimes, we are lucky and have a repeat of a nurse that she has loved before. Sometimes~not. I anticipate it every shift. I anxiously wait to meet them and see how she interacts with them. She will ‘tell us’ within a few minutes if it’s going to be a good shift~or not.
During one of Mary’s most difficult hours of the last 24, she couldn’t be relieved. She didn’t recognize her dad. She was in tough shape. She pushed the ‘Nurse’ button. After a few minutes, some random staff member appeared at the door, hands on hips, ‘Uh—We are in the middle of a shift change here, sooooo…’ (Don’t bother us.)
Really? Really. Here’s a hint: don’t ever tell a 19 year old with a blood clot, AVM, and brain swelling on day 8 in the ICU, ‘We’re busy.’ Especially in front of her dad.

Reboot
Mary’s doctors are amazing. I wish it were not inappropriate, because I would hug them. Someday I will. They are saving her life. They are communicating and teaching us more everyday about what Mary has and why it is causing so much pain and what challenges lie ahead.
We can now tell you more about the brain than you may care to know. But it really does help to get inside her head! Literally.
She continues to have a gradual increase in swelling (this will peak at day 14). But no new bleeding. We just have to wait for time to pass. Doctor said today, her brain needs to sort of ‘shut down’ and hibernate and have some time to heal itself. The blood clot will shrink in about 6 weeks. The AVM will be dealt with in August with Cyber Knife radio surgery.

‘Not here. Or here, so much. But right in here.’
If you can pray for one thing for Mary, it is for her pain to decrease so that she can sleep and be more comfortable. She gets really frustrated with the pain. She says it’s like the strongest throbbing migraine you’ve ever had. 24/7. This could be long term.
It’s because her brain is swelling so much that it has shifted off center to make impossible room for that blood clot and swollen tissue. This massive pressure causes her extreme, constant pain. They can’t mask it with too strong of pain meds because they will lose the ability to check her for alertness and neuro responses~which are the only measurements they have to make sure that she is not declining.

‘I love you so much.’
Every hour we spend with Mary, we realize just how meek and humble she is. She shows gratitude to every person in her room. She compliments every person who comes close to her. She asks her doctors, ‘Now--how are you doing?’
She had difficulty sharing her feelings with others before June 19. She rarely said ‘I love you.’ Now, she tells us frequently!
Mary is a new person! But really, she’s changing all of us.
Love Always~
Peggy and The Fam
*I am very sorry but because of Mary’s discomfort and critical status, we are holding off on visitors until she is much more improved. Please text, email or send a card. We love to read all messages and hear of well wishes. None will go unnoticed.

Mary with Grandma Bigelow Thursday June 24, 7th Floor room
Kris and Mary Saturday, June 26 ICU

Mary’s 7th Day~June 25, 2010

2010-11-12T16:56:00.001-08:00

Family Reunion~Rearranged

For the last year, Brad's parents have planned the first ever 'Goodwin Family Reunion.' It was to be this week in Placerville, CA. Family from Hawaii, Utah, California and Washington would spend this week together. It was a year long feat to get all the flights and work schedules arranged and we were all very excited!

Sunday evening, the day after Mary’s hemorrhage, Nana and Grandpa decided to postpone the reunion. At first we felt really disappointed and ached for them because this was such a special event. But within a few days, we could see the Lord's hand in even this situation. Because of the reunion plans, Brad and our young married kids who have internships, college, and new careers were open and available to be here with Mary and with us.

Even more amazing is that Phillip was offered a freelance film job~in Portland~that starts on Monday. He and Jessica will be here until July 11. What a memorable reunion we will have here!

9.5 on the pain scale

I think my updates have given a false impression of

‘Mary's back! And in just a few days, she'll be home and good as new.' There’s a fine line between sharing the facts and not scaring anyone or sounding discouraged. We posted a video on facebook of Mary that was very optimistic, and we love those moments, but they are quite rare at this point.

Mary has had severe trauma to her brain. The brain is amazing! It has great adaptive and healing qualities, but at the same time it affects everything about our bodies. The blood clot and other swelling are causing great pressure on the surrounding cells. Since the blood gathered over her left temporal lobe, Mary's speech and consciousness are greatly affected. Dr. Shanno expects that it will take up to 6 weeks for the blood clot to dissipate and the swelling to be gone. Even after that, it may take months for Mary to fully recover.

Sometimes an IV and pain meds don't even make a dent in her agony.

Yesterday she said to Dr. Shanno:

'Ok so is there anything you can do about this part right here?' (pointing to her left forehead)

'I will give you $1500 if you will please, please fix it right now. Just take it out~do it right now!'

Catherine took the night shift and this early morning, Mary was in the most pain we've been aware of so far. Nothing was working. After 30 minutes of direct powerful pain meds, she pointed to the pain level chart and was still at 9.5 on a scale of 1-10.

We are very hopeful for a full recovery for Mary, but as of now~it's a long road ahead...

'I have 2 sisters.'

What a blessing to have 4 adult children, including spouses, to help Mary right now.

~Phillip has been able bring out Mary's humorous side that they share together. (Yesterday she did a perfect impression of 'Tracy…' from YouTube~classic Mare)

~Jessica gave Mary a head massage yesterday and Mary said, 'This is the best thing anyone has done for me since Saturday.' When the nurses asked about her family she said, 'I have 2 sisters~Catherine and this one here, Jessica.'

~Catherine has barely left the hospital since she arrived Sunday. It's hard to separate her from Mary. She has been my rock.

Mary said, 'I want to be you, Catherine.’

~Kris arrives Friday, from CA for the weekend. He has so patiently shared Catherine with us. They are newlyweds from just last month!

'Wait a minute, people know I am here?'

Yesterday, Mary was so amazed that people are aware of her and she is so touched when we tell her someone called or prayed for her.

'Wait-they prayed for me? How do they know I'm here?!'

We have been so grateful for the love and prayers offered for Mary. Even though we are happy Mary is out of the ICU, yesterday was hard for her. She loves to visit with people and her memory of people is intact, but we can see the exhausting toll that it takes on her.

*So for the time being, we'd love to welcome visitors to see Mary from 4-6 p.m. at the hospital. She does best when she visits with people for about 15 minutes. If she is with her Doctor, Nurse, Therapists or in pain, we will have to make adjustments.

This will allow Mary to spend the rest of the day sleeping, healing, and working to recover.

Here is a nice greeting from Mary. She is looking forward to being 'done' in a couple days, but we know that it will take longer. She has been so happy and optimistic and hardly frustrated with her hospital stay.

Thanks for all of your love and support, we feel those blessings every day.

Love,

The Goodwin Fam

Au Revoir ICU! Mary~June 24, 2010 Day 6

2010-11-12T16:55:00.000-08:00

Au Revoir ICU!

June 24, 2010 Day 6

Chatty Mary

Brad took the night shift and let us all go home and sleep in our beds. Sleep never felt so good! We all thought we would watch a show together before bed and we kept dozing off!

In the morning we were trying to get the house and ourselves in order and got word from Brad that Mary was talking--a lot!

Her words were sometimes mixed up but she usually will notice it and either correct it or ask for help. She talked non-stop to Brad and the nurses for 7.5 hours!

By the time we arrived, Brad looked completely exhausted. We did not have a full understanding of how this could be, but after a few hours, we got it. It is exhilarating to talk with her.

She is so passionate about what she is saying and also needs word search. She is very repetitive and wants to make sure that you believe what she is telling you.

We laugh and cry and look at each other and hug and pray and say to each other 'this is a wild ride!'

'I am a 100% completely different person.'

Mary has always been very confident in what she believes. She has had to defend her religion all throughout her life, but has done so with class and confidence. She has had a more difficult time expressing her emotions to others or expressing to others sorrow, regret or whatever she needs to improve in herself.

If you are able to visit Mary while she is recovering, I am confident she will tell you what she tells us: 'I am a 100% completely different person. Do you believe me?'

Yes Mary! We believe that you are more amazing than ever.

Gain a blood clot--lose a few pounds!

Some of Mary's interests and focus are super intensified right now. She has always been an athlete and very health conscious. She has been working out regularly since she came home from BYU this summer and she and I had a goal for the summer of losing a few pounds and getting more fit.

Yesterday, she asked her nurse:

'Do you have a measurer? A measure thing--that tells how big you are? Oh a scale--do you have that? Can we find out if I lost any money? (pounds)

Her high tech futuristic hospital bed can do almost anything, including weigh her! In the bed! It takes the bedding into account. It has a digital readout and knows how much she weighs since she arrived through today!

'Ok, so is it better if I lay really flat? Will I weigh less?'

(she lay so still and was like a kid about to receive a great surprise)

She lost 8 lbs in 82 hours.

'Are you being serious with me? I lost 8 pounds??!! Oh my gosh!! That is the best thing that has happened to me all week!'

Simple pleasures are the best : )

'I have never loved anyone more in my entire life.'

Have you seen Mary's room this summer? It is OUT OF CONTROL! We don't know how she has functioned, but in her defense, she has been keeping really busy with odd jobs and has had many Nanny jobs since Catherine’s wedding in May. Sometimes she had several jobs at the same time. Consequently, she had not one spot of carpet to step on or one inch of space on her bed!

Yesterday, Jessica began the feat of getting Mary’s room clean. When Phillip told Mary that Jessica is cleaning her room, she said, 'She is cleaning my room?! I have never loved anyone more in my life!'

The Invention of Lying.

For now, Mary does not have the 'sensor' button working completely, in her speech. She will be completely honest with you. It is very beautiful, but at the same time it is a roller coaster as we prepare ourselves for what she will say next!!

The wonderful part though, is she tells each of us how much she loves us many times. She is so sincere and she says:

'Do you believe me? This is me--I am being very serious right now. I love you so much.'

Most of us have not ever heard Mary tell us these words--it is such a blessing.

She is full of joy and she is very positive. She says she wants to be better from now on and she feels that she was not the person she should have been. We reassure her that she is wonderful and please don't worry.

She also is complimentary to every single person she interacts with.

'You are so hot!' 'Mom your skin looks so good.' 'You are in such good shape-you are all so beautiful.'

Au Revoir ICU

Last hour, Mary graduated to the 7th floor!! She is progressing along slowly, but her doctor says she has many days left here.

She will have a physical therapist and a speech therapist very soon.

We are so excited for the next step!

Feeling Helpless?

We are overwhelmed with the outpouring of love, prayers and concern for Mary. It gives us great strength and it helps us to carry on. Words are so shallow and meaningless for us to use as our expression of gratitude to you! We cannot really fully comprehend just how blessed Mary is to have so many people who are praying and wishing her well, all over the globe.

Please know that every card, text, and email are being read. Mary loves to read the cards she receives. We hang them up in her room and she is remembering every person so far!

Even though you may feel helpless, your prayers are actually helping us the most! And within the next week, there will begin to be many other opportunities to help Mary. She will likely benefit from visits and other occupational and speech therapy activities.

Brain experts

If you would like to learn more about what happened to Mary, please go to this link below: (Thanks to Elisa Ho!)

http://en.wikipedia.org/wiki/Cerebral_arteriovenous_malformation

Learn it ! Live it! Love it!

Peg and the Fam

Miracle Mary

2010-10-20T19:37:00.000-07:00

June 23, 2010 Day 5

“Did I tell you what happened?”
As I clicked ‘send’ on yesterday’s morning update, I received a text from Brad: ‘Amazing miracle. Mary is awake, conversant and 100% clear with a near perfect memory of everything.’ Thankfully, he videotaped the entire 6 minutes with his iPhone because Catherine and I had spent the night at home.

Mary proceeded to tell Brad what happened Saturday morning, June 19, 2010. This was comforting to us because we have been so upset knowing that Mary was alone from 9am-5:45 pm, when I found her at home, in this state.

‘Dad! Did I tell you what happened? I woke up and was getting ready for work. All of a sudden I had the most horrible headache in my entire life. I really thought I was going to die. It felt like the worst headache I had ever felt and then BOOM, a vein or something burst in my head. It was like a nail or broken glass broke in there.'

‘And then Mom came home and she was freaking out and then she said ‘Uh-Oh! Something’s wrong.’ And then Bishop Williams came over-he's my Dr too!--and then I remember going on the ambulance. I threw up in this building here, but it wasn’t a big deal.’

This window of ‘awake Mary’ continued for 90 minutes. Catherine and I got to see the tail end of it. When she saw Catherine she asked, ‘Did you come here just for me?! I love you Cath.’

‘Je parle Francais.’

Dr. Shanno told us on Monday that it is not uncommon for patients like Mary to lose entirely any secondary languages they have learned. We were so disheartened! Mary is nearly fluent in French. She is in 300 level classes at BYU, tutored at a Provo elementary school, and is set to go to France next spring for study abroad.

During her ‘awake’ period yesterday, Catherine asked, ‘Mary, do you remember how to speak French?’

‘Je parle Francais.’

Catherine: ‘How do you say, I love you?’

‘Je t’aime.’

I said ‘Je t’dore Mary.’ She quietly replied, ‘Je t’adore.’

Miracle!

The next several hours, Mary slept completely sound. We are sure the morning wore her out. For the rest of the day, her neurological tests were not as great. She was almost always jumbled in her speech . But we were assured that there will be highs and lows. She still was excellent in her physical responses: ‘Mary squeeze my hand-now let go…Mary raise your left foot-now your right...’ All crucial responses~all correct.

Later, she was not answering some of the questions correctly and the nurse kept asking them. So after the 4th question, her answer was, ‘That’s gonna cost you more money.’

Buck Up Mary!

Some of Mary’s closest friends in high school were the guy athletes. She was a 2 sport Varsity athlete; soccer and ran state track all 4 years. She is a fierce competitor and pushed herself just as hard as she would push her teammates.

Mary’s good friend Sam Beck from track, and church, is in Africa on a 2 year mission. Sam’s mom told us yesterday that he emailed his family and said ‘Tell Mary to buck up! She can do this! If I can handle Africa~she can handle this!’

Mary is up for any challenge!

Always a missionary~even semi-conscious!

Mary’s Dr was checking on her and explaining her current status to me. He had thankfully seen Mary that morning as well, during her ‘awake’ time and said ‘This is a very different Mary than I’ve seen so far!’

When he was finished, I asked Mary, ‘Do you have any questions for your Doctor, Mary?’

‘What religion are you?’, Mary asked sincerely.

‘I am Presbyterian. But I haven’t been to church in many years.’, he replied with a smile.

‘What religion are you, Mary?’, he asked her.

‘I believe—in Jesus Christ, Joe…---it’s been a long time---and faith, lots of faith.’

‘My brain hurts so, so bad.’

Mary had very strong pain in her head for the rest of the day. She asked many times, ‘Why did this happen? My brain hurts so, so bad.’

The Doctor showed all of us the CT scans on the computer and explained everything about the AVM and the blood clot. It was so cool to see video and film of her brain! It was sobering to see the size of the clot~it is the size of a business card!

The Doctor said he is not at all surprised with the level of pain Mary has and that her speech is jumbled and that she is so sleepy. In fact, he would expect her to be in much worse condition for the size of the clot she has.

‘Are you staying at our house?’

Phillip and Jessica arrived last evening. She immediately knew them by name.

When she saw Phillip she asked if they are staying at our house.

‘Oh good. It’s soooo comfortable there.’

They were able to see Mary’s scans, and meet the Doctor.

After our amazing tutorial on Mary’s brain, Phillip said to Dr. Shanno,

‘Just don’t forget~you cut open people’s brains and save their lives.’

What can you say to someone who is truly working days and nights to save such a precious girl?

‘Please pray for me.’

It is truly humbling to be with Mary-even for a few minutes. She is so faithful. She asks all of us to pray for her or with her many times a day.

‘Phil I need you to fray. Fray so much. Wait--am I saying that right?

‘It’s ‘pray’ with a P’, Phillip answered.

‘Oh yeah. Pray. Please pray that tonight they’ll fix it. And in the morning--when I wake up, I can get this out of here and go home.’

Miracles really do happen every day!

With love and gratitude~

Peggy and the Fam

Mary, Jessica, Peggy

Gerbera daisies from the Dunn Family

First real smile we've seen so far!

Mary ~ Day 3

2010-10-19T15:27:00.000-07:00

Mary's pretty toes are always sticking out from the covers

June 21, 2010

Mary had a very good night last night with quiet, still sleep. When she first saw me this morning she said 'I want french fries-please Mom? Why can't I have them?'

She was awake and lucid for about 2 minutes and so we tried asking her questions about the 19th~the day of her hemorrhage~she was alone until I found her~9 hours later.

She was so concerned about 'What is wrong and when can I go home?'

She has great care-she has had the same nurse, Tad, both nights and he returns tonight. Brad says he looks like a young Ray Liotta. We are so impressed with how efficient he is with Mary's care. And he works so quietly. He brought in another cot for Catherine so she could stay here with Mary and I.

Mary will have 2 procedures this afternoon~an angiogram and an embolization. They will seal off any further bleeding and give the surgeon a clear 'photo' of what the options will be, down the road, to remove the AVM and remove the clot. Dr. George Shanno is her neurosurgeon and is specialized in this condition.

She is expected to be here for 1 week.

Small victories are keeping us going. Today the nurse asked her what the date is and she said,'The 21st or 22nd.' We almost cheered!

We are so appreciative of the many outpourings of love for Mary. She will be amazed when she learns of how many people have reached out to her.

If you want to know more about what an AVM is, just go to google.com and search AVM. The best definition is the first one.

We'll keep you posted!

Much Love-Peggy and the Fam

*Mary’s quote from last night to her nurse: 'Sir will you please help me find the restaurant?'

(We are keeping a list of everything funny that she says!)