Sunday, January 30, 2011

Supporting Cast

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.

Wednesday, January 26, 2011


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.






Tuesday, January 25, 2011

He cares about more than just her brain


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.










Monday, January 24, 2011

Swelling goes down, Spirits go up.


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.

Sunday, January 23, 2011

Miracles Happen Everyday

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 CatherineBrother 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.


Saturday, January 22, 2011

Continued Prayers


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




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!

Friday, January 21, 2011

AVM out.



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

thewillenbrechts.blogspot.com

<3

Here we go!


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!

Wednesday, January 19, 2011

Believe! Mary’s 7 month AVM Anniversary!

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!


Read more about Mary’s story at:

sanguineaubergine.blogspot.com