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.
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
Monday, November 29, 2010
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~
Posted by Mommy & Mare at 1:08 PM
Friday, November 12, 2010
“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
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 2nd language returned.
The 2nd 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!
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
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!
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 20th!
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?!
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!
Peggy and the Goodwinfam
Posted by Mommy & Mare at 5:42 PM
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 19th 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.
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.
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 2nd 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.
‘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.
Peg and the Fam
Posted by Mommy & Mare at 5:36 PM
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
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
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 5th? No, it’s the 15th. 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!
Posted by Mommy & Mare at 5:28 PM