Address

So many of you have asked for our address. Oh, I forgot to mention we bought a house on Sunday. Nutty, right?! Our address at our rental is 1805 3rd ave., n

Seattle WA 98109

 We were finally able to close on the short sale Accross the street. It needs a lot of tlc but it's a great investment and it keeps the kids with their school and friends. 

Patience and hope

Yesterday I spent the day back and forth on the phone with UPenn and UW trying to figure out how to get an appointment.  UPenn was saying we didn't sign a records release form.  Paul said he took care of all of this while we were in the hospital.  After several phone calls we decided Paul could take the images they needed and the papers they needed to UW himself (he had them).  As the day went on and Paul had time to go through the huge stack of mail he found two requests for a records transfer fee of $15!!!!!!!!!!  This fee request has been sitting in Seattle for weeks and no one on the phone or at Penn ever mentioned this fee.  Our records could have been transferred a while ago.  This was incredibly frustrating to hear! Luckily he could pay the fee online.  The incredibly nice person on the phone at UW was so patient and kind as I talked to her at least 5 times yesterday!  When Paul got there with the CD's and papers they were waiting for him because I had talked to them so much! Now that they have the information I should be able to make an appointment in a day or two when the doctors review the case.  It might sound restrictive but it is important that the doctors are taking a case that is in their area of expertise and have the appropriate skills and experience to work with us.  I'm glad they are looking so carefully and that they choose to treat cases they feel competent to work with.  

I'm flying out this Friday or Saturday from Pennsylvania and of course I have mixed feelings.  I miss the kids and Paul so much already and it's only been a few days, but I love the feeling of being near to my family and friends here.  Of course, it does help that it was in the high 60s and sunny in Seattle yesterday while it snowed all day here in PA! I'm really looking forward to getting back to my walking lifestyle.  It feels so restrictive here to not be able to walk outside (because it's freezing!) and I can't go anywhere because I can't drive, so I'm really at the mercy of others.  

There have been a couple of big personal developments for me this week both physically and spiritually. 

When we were taking Paul to the airport I noticed that it was difficult for me to process a lot of choices (about who was driving, where to park, whether I would go in) and I couldn't mentally see all of the choices in my mind in the way that I used to.  It was really the first time that I noticed that I couldn't make decisions in the way that I used to.  

I talked to my visiting nurse about it yesterday and she said that even though I can't see it or compare I am a million times better at making decisions and remembering things than I was when I came home from the hospital.  She said my improvement has been remarkable.  All of those who have been with me through the process agreed, it's just that I didn't notice it before so it's striking to me.

The nurse encouraged me to do logic problems, to play memory with the kids, to play candy crush, words with friends and trivia games on my phone and said these things would all help me to put things back in perspective and sharpen my decision making skills.  

I'm still having some issues with things on my left side and have walked into most door frames on the left side.  Matt and Yaz were here making dinner one  evening and he was on my left and I just kept walking into him over and over!  I have to be very careful to look exactly where I'm going (which has never been a strong trait of mine!!!!!!!) I've also started to put my hands out a little bit to feel for something I might not be able to see directly.  The nurse said it can take 8 weeks for the swelling to go down on my brain and after the swelling is gone I might see some of those things improve.   Despite all of these things I feel very much myself and have had the energy to do some laundry and make coffee and organize my things a little.  I feel so blessed then when I laugh and talk with friends and family it feels normal and ordinary and cheerful. I was having some minor headaches but that seems to have subsided as well.  I'm not taking pain meds anymore and really I'm only down to one anti-seizure pill a day.   I have been working on putting the pieces of the last month back together as I don't remember much from the time I went to take a nap until I came home from the hospital.  I don't remember many of your visits and as I look through the incredibly thoughtul gifts and cards it reminds me of how many visitors I had!

I've always said that God has perfect timing.   It's not our timing, but God knows what God is doing.  As I piece together these memories I feel so grateful and blessed for the way things happened on the 30th.  I thank God we were home, that I was in bed, that I wasn't at a restaurant or a store or driving.  I thank God that Paul's mom was here and had a calming presence, that Kelsey took the kids and cared for them.  There are so many things that could have been different and could have altered the outcome and I just get overwhelmed by the order of it all.  Thank you for all that you have done and continue to do for my family and I.  

Many of you have asked what you can pray for specifically.  And I know many of you might not be praying people.  

Earlier this week I was focused on read all the verses I could find on fear.  I wanted to hear all of the promises that I have no reason to fear and the verse in 1 John 4--  Perfect love casts out all fear kept coming to mind.  I just kept wondering about that and how to cast out fear of the unknown future.  

And as I was cleaning up the mess that my room has become I came accross a cookie that my sister in law got me for Christmas.  Wrapped in celophane was a simple sugar cookie she bought at a church function and in green gel icing was the word hope.  It took my breath away and reminded me that there is no value in focusing on fear because fear will do nothing for me.  Fear will trap me and separate me from the promises of love. 

Last night I wanted to learn more about 1 John 4 and Love casting out fear and so I watched an online video/sermon/testimony  from Joyce Meyers about fear and love and projected on to the screen was  Romans 12:12 (not the verse, just the citation.)

I read more in 1 John 4 and realized that a different section of the verse in a different translation was the verse Paul and I chose for our wedding -- Beloved let us love one another because love comes from God.  In a very round about and windy way I was brought back to the incredible love I have for my husband and for the incredible gratitude I have for all of the love I have known and know in this moment in my life.  

So this morning I was determined to focus on what scripture has to say about hope and the first listing in my concordance was Romans 12:12. 

Romans 12:12 --  Be joyful in hope, patient in affliction.  

In Genesis 18 Abraham shows us the first example in the bible of intercessory prayer --  pleading with God on behalf of another person.  And through this example we know that God hears Abraham and that God is willing to listen and act based on Abraham's pleas.  

So, though I believe in science (hello... I let people saw open my skull and operate on my brain!) I believe in miracles and I believe in prayer.  If you have asked me what to pray for... pray that fear does not take hold and that when it creeps in that I remember that hope and faith are stronger than fear. Pray that I can be patient through this process.  Patience has never been my strong suit but I believe that through this process my faith will grow and I will learn so much.  Pray that the tumors don't return.  

Even as we speak, our new community in Seattle is making Paul food, organizing play dates for the kids, helping with our cats, and offering acts of service and love.  I think my list of blessings has blown past 1,000!!!  

So, thanks for reading this really long post!!!!  And thanks for your love and support and care.  And for a million other reasons thank you!!!! 

The little things are really the big things

I have this enormous banner above me  here at Kelsey's house. First Pres made it for me and people signed it when this all started. It says We ❤️ you Stephanie.  When my visiting nurse first came she just stared at it and said "that's a LOT of signatures!

I was thinking a lot today about all of the amazing people I've been so blessed to have relationships with over the years.  I tried to mentally add up all of our communities.  I thought about the hundreds of teenagers that called Paul  and I mom and Dad at camp mensch Mill, our first church together at Bausman UCC in Wyomissing of about 300 people, almost all of whom were with us as we were married...baking our cake taking our pictures, decorating, singing, lifting us up. My first solo church in Maryland of around 100. Our time at Oxford Pres with another 300 or 400 people.  And then our community at First Presbyterian in West Chester, easily 1500 people but still with the feeling that we were and are all so close. Then, on top of all of this I thought of the small church that raised me where we were all related (almost literally), of our short time worshipping at Union in Seattle and just how for as long as we have known each other, church has been our home We were just telling the story of our engagement this week...we started the afternoon on the CROP walk to stop hunger and ended the day at the Wyomissing Diner with the Derr family right before Paul proposed. I  used to say to mothers and fathers when I baptized their babies that a church community is the blessing of extra grandparents and aunts and uncles to love your babies when they are driving you nutty  and to just extra hands and hearts to  wrap all of you in the embrace of a different kind of human and holy family.  I remember Anne Lamott saying in her book Traveling Mercies that she told her teenage son Sam that he had to go to church......... “The main reason is that I want to give him what I found in the world, which is to say a path and a little light to see by.  Most of the people I know who have what I want – which is to say purpose, heart, balance, gratitude, joy – are people with a deep sense of spirituality…They follow a light brighter than the glimmer of their own candle; they are part of something beautiful…Our funky little church is filled with people who are working for peace and freedom, who are out there on the streets and inside praying, and they are home writing letters, and they are at shelters with giant platters of food.  When I was at the end of my rope, the people at St. Andrew tied a knot in it for me and helped me to hold on.  The church became my home in the old meaning of home – that it’s where, when you show up, they have to let you in.  They let me in.  They even said, ‘You come back now.’ … Sam [her son] was welcomed and prayed for at St. Andrew seven months before he was born.  When I announced during worship that I was pregnant, people cheered.  All these old people, raised in Bible-thumping homes in the Deep South, clapped.  And then almost immediately they set about providing for us.  They brought clothes, they brought me casseroles to keep in the freezer, they brought me assurance that this baby was going to be a part of the family.  I'm fully aware that church hasn't been an awesome experience for many people and that truly breaks my heart. Actually I've spent most of my ministry trying desperately to help people find ways to see their faith as relevant and vital and life giving. Anne has been one of those candid authors who I've always enjoyed reading, but today another one of my favorites was lodged in my head. Many of you have probably heard me quote her so much you can guess but Ann Voskamp's 1000 gifts kept me smiling from ear to ear. In her book she encourages her readers to keep a simple list of blessings and see how quickly they add up. Her belief is that at table with his disciples when he knew he would die, Jesus gave thanks before he broke bread.  That this simple act redefines our lives and if we learn to give thanks we will be transformed.  This practice has always re-centered me when I'm off kilter. 

I've been feeling so much better the past few days. I'm having some strong headaches and some vision loss on my left side. I'm still a little dizzy and tired but I just feel more like myself. But today I got up and came downstairs and I made my kids lunch.  I made my kids lunch! I microwaved hot dogs and poured milk. And put ketchup on the plates all by myself. I was so thankful to be able to do this. It's been over three weeks since I have done anything like this. I took a nap and didn't do much else but then at night I laid with Maeve in bed and helped her read through 20 pages of Curious George. It felt so normal and so good and the little things stunned me today as the big things. This banner is such a huge reminder to me of 20 years of ministry and relationships and believe me when I say I feel your prayers. Thousands of them. Every card and note and message matters and reminds me of how amazing it is to be a part of this family. Thank you so much.... I know it's like this every day, paying attention and noticing moments of joy but I microwaved hot dogs today. 

Paul and the kids are heading home Sunday and I'm going to hang out a little bit longer. I was trying to get my doctors appointment set in Seattle first but they are still transferring information and putting me in the system at UW so we should be able to finalize an appointment in another day or two. We tried to get an appointment at HUP and they couldn't see us until February either.  We are eager to know more about treatment and plans and timing but we also feel confident that the doctors we are going to have are amazing.  So for now we hold on, get the kids back in a routine, keep praying and trusting and take note of ordinary blessings. 

Gobs of gratititude

It occurs to me that it might seem like an odd thing, but I just keep finding myself uttering the words, "I'm so grateful" under my breath all day long.  Tonight as Kelsey played board games with the kids, as Maeve plowed through a book full of words she has never pronounced before, as the kids played with lifelong friends, as I enjoyed ice cream cake Paul bought me just because....I have always been so keenly aware of the abundance of blessings in my life and I am so grateful for all of this. 

In the hospital I was sharing with Amy and Erin some of my core values about theodicy.  In a book study I did a few years ago we read The Good and beautiful God by James Bryan Smith. I recommend the book as a worthwhile read, but it wasn't life changinging for me--- except one part. In the book Smith shares his own unimaginable loss-- that of a child. And though I don't have my copy with me, I don't need it to remember the words that will never leave me.  In Matthew 5:45 Jesus says" he causes his sun to rise on the evil and the good and sends rain on the righteous and the unrighteous.  Smith talks about plenty of circumstances all of humanity is familiar with and how we are often puzzled by circumstances where we notice what we see as moments in life thst appear unfair or unjust.  Scripture is clear... The rain falls everywhere and on every one. And though I don't have my book copy handy what i recall is what I believe to be a quote bySt. Augustine that the benefit and the joy of life as a Christian is not that we are without trial, but instead thain the trials we are not alone. Jesus is with us and loving us and comforting us and taking care of us.   The great benefit is that through it all we know Immanuel, god with us in a way that wipes the very concept of loneliness from our understanding.  

Im fully aware that I'm just at the beginning of this journey and I know there are going to be lots of tough days  ahead but I know that I am not alone and that I never will be.  I'm going to keep whispering  my gratitude because the mercies around me are miles of pages long and  I'm just so grateful. For all of you. And for Paul and for my amazing family and for everything that is already so perfectly in place and for the blessing that Jesus has always been in my life.  I can only hope that someone else will come to know this intimacy and love I know so dearly.  Good night...I love you!

The second wait is over

We had our followup visit today.  We are sorry it took us a while to post, we are still processing the information.  The doctors reviewed the pathology yesterday and we now have a good idea of what this is and generally how it will be treated.

It is a: Grade III mixed astrocytoma-oligodendroglioma

What does that mean?  

First, the grade: a grade 3 glioma is half way between being benign and malignant. It is slow growing and is very likely to recur in the future, potentially at a higher grade. 

Second, the type: mixed astrocytoma-oligodendroglioma.  The tumor is primarily made up of the olgodendroglioma cells. This type of tumor is rare, occurring in only 1% of tumors.  We originally thought it was only the olgodendroglioma type but  now we know it is mixed cells.   They are still waiting for some genetic marker test for the P1Q19 gene to see what exact treatment we will take. This  genetic marker can work in our favor as well for outcomes. 

Treatment:  this will likely be a combination of both radiation and chemotherapy. Once we return to Seattle, we will talk with a neuro-oncologist there to determine our exact course of action. 

Because of the likelihood of recurrence, this will be something we will be monitoring with doctors for the foreseeable future. However, due to its rarity and since we don't know when, if, where, or what it will be when it does recur, it is difficult if not impossible to predict what will happen in the future. 

The first MRI scans will begin a month after surgery.  The scans will keep a close eye on any new growth and tell us when and how things may change. The scans will inform the treatment.  At this point our doctor is recommending aggressive radiation to focus on the remaining  tumor cells in my brain. As we said before, brain tumor cells will not grow as different kinds of cells, only as brain tumors. There are various factors that influence the prognosis and treatment. One of the most positive markers is being less than 43 years old which works in our favor. We reviewed various outcomes and data from other cases with our doctor and we will continue to assess data as we receive it.

Our doctor recommended this site for looking up additional information:  American Brain Tumor Association. There is sooooo much information and it's hard to process and understand. As we grasp it we will try to keep you informed. 

We received clearance to fly sometime next week back  to Seattle.  The kids really need to get back to school and routine.  I can't drive for a while-- after I am cleared by the Washington Dept of transportation, perhaps up to 6 months. And of course Paul needs to get back to the office. I also can't dye my hair for 4-6 weeks---I'm so gray! It's killing me!

I also had the staples taken out today which really didn't hurt at all and I was very very nervous about that. 

I'm still incredibly exhausted and feel the need to rest a lot. The doctor encouraged me to listen to my body and let it heal but as soon as I feel able,  to resume my normal lifestyle.  I have no physical or travel restraints in any way after I go back.  

We cannot express how grateful we are for the amazing outpouring of love and prayer.  We know we are surrounded by your nurture and we feel it tangibly.  

We are still working through the information from today and we aren't ready to process it all. Instead we went to the Capitol Grille and had good wine and steak for lunch followed by a Target run for Legos and sweats!

Paul and I have always had the most awesome of bonds and we continue to praise God  for our relationship.   We spent the evening with family and we are snuggled by the fire while the kids are enjoying a sleepover.  We don't know exactly what's in store but we know we will need to lean on you through these months and we thank you in advance for your patience and prayer and for the times we might not be ready or able to share. We love you all so much! 

Paul & Stephanie

Call Backs

We received a call back from my surgeon this morning which gave us a a little bit more insight into what is going on.   He shared that it is a stage 3 glioma.  They were able to get 95% of the tumor and so what is left on my brain is really just loose particles in empty space.  The remaining matter will be treated with courses of radiation.  There really isn't a chance of the tumor growing or spreading elsewhere in my body which is great news.  We asked the doctor if this is cancer and he responded that that question is not really how we approach this as cancer is really a type of cell.  What he said is that we won't suddenly see bone cancer or lung cancer from this. What we will have is a discussion about how to treat what is remaining and how to stay on top of scans to see if there is any change or new growth.

And it looks like the wait continues

Many of you have said, "no news is good news."  Let's hope that is the case. I left a message with the doctors office yesterday but did not get a response. So, it looks like we will have to wait until next Thursday or Friday. 

We had the at home nurse stop by yesterday, and that went well.  A nurse will be here every Monday, Wednesday, and Friday to check on her.  Today a physical therapist will be coming to the house to work with Steph. I believe an occupational therapist will also be out to visit at some point. 

The plan continues to be to get Steph healthy and strong while we wait for the report from the doctors. 

God bless!

The second wait is the worst

And the longest. 

Well, it's now been a full day since we were discharged. However, we still have no news on the pathology. Maybe tomorrow, or maybe next week, not sure. All I know is that right now we have to focus on Steph's recuperation from surgery. 

I also know a LOT of people are very curious about the outcome as well. Trust me when I say there is no one more interested in the results than us. But, we all need to be patient and trust in God's plan. 

On another note, Steph did a lap in her new wheels around the house today, and her pain appears to be considerably less than before. Her spirits are higher and she is eating more too. This is great news for her healing process.

I've also started working again. I have a lot to do and get caught up on, and I have to do it all 3k miles from the office. 

I will be sure to post here again tomorrow news or no news. 

Out of the hospital

It's been a long week!  It will be nice not to sleep on a chair. It's funny though, looks like Steph prefers it :-)

Hopefully we get the final word on pathology tomorrow. Say a few more prayers for us!  The second wait is hopefully over soon. 

Day eight!

We are being discharged today!!  Just waiting on some paperwork and a shower for Steph. Yeah!!!

So, it seems the tumor team meets every thursday. The hope is they will discuss Steph's pathology report tomorrow and we will find out more then. But, if not, we have to wait until next Thursday :-( 

The pain medication she is on fully wipes her out as well. At this point, even if she was cleared to fly, I would not want her to do so by herself. So, we will see how things go on a day to day basis. 

Speaking of flying and Seattle, we have only been there for 6 months, and the community and support we have there already is amazing. One of my best friends from high school lives there and has been helping keep an eye on the house and cats. Plus, the friends we have made in the neighborhood and from the elementary school have started to rally and setup a Mealtrain!  I am floored!  Knowing that no matter which coast we are on, we have people to help us is not only amazing, but helps me to help Stephanie. I am so thankful for all of the wonderful people in our lives. 

Going home (not Seattle yet)!!!!

The PT talked with the doctors. The doctors gave a thumbs up as well after talking it over with then though, we all decided tomorrow morning would be best. The PT exhausted her and there is snow on the ground, so we will stay here one more night and leave in the morning!!

Yeah!!!!!!!

Day seven

Doing a little better. She had breakfast and went down for PT. She had to take a cognitive test from the occupational therapist which she scored a 22 out of 30. It is an ok score considering, but a 26 is considered normal. The areas she needs a little work on where recollective memory and drawing/patterns. She would kill me if I said this, but I think she might have always had problems with those areas :-). 

We just finished walking the furthest she's walked since she's been here. The PT went to get some steps to practice on as well. He said he told the docs that they have his blessing for a discharge!!!  Now it is just up to the docs to clear her medically!!

Oh, and she gave me permission to post a pic of here incision:

It's snowing in Philly

Room change, sort of

So, when we moved back into the step-down unit, we had a different room than with poor old Mary Jane. The new roommate was nice, even with all the snoring. However, she definitely had the better side of the room. Today, she moved out and we asked to be moved to her side with the window. Now we have a much better view. 

Steph has done great today. She has eaten at all 3 meals. PT came and she took a walk down the hall with them. She had to use a walker (she is 6 years younger than me :-) ). And she got up again with an occupational therapist later in the day. All in all, a really good day. 

Oh, and since we moved the room around, I get a better bed too. 

The blog

I don't normally post on Steph's blog. Hence, why I call it her blog. But, you guys must really love my writing!!  When I look at the page stats, one of articles I have written has over 1000 page views!

Entry	Pageviews
She's back in ICU ... Yeah Jan 2, 2015, 13 comments	1118
Back to the step-down floor Jan 3, 2015, 5 comments	739
It seemed to start as a cold ... Jan 1, 2015	705
The first wait ... Jan 2, 2015, 6 comments	649

I know it is not my prose that brings you here, but your love for my family and especially for my amazing wife Stephanie. 

We have prayers and support flowing I from all over the world, from Iceland to Japan to Sesttle and Philadelphia. I get a little choked up every time I read one of your comments of support. 

I know I have said thank you before, but I don't think I could ever do it enough that you all would fully understand. But, I will try .... Thank you!!

Day six

So, I hear people want to know what's going on ... Sorry for the slow down in posts :-P.  Not a lot has changed, which is why I have been silent. 

She had the PT and a occupational therapist come yesterday. She walked part way down the hall and had her sit in a chair in the room. She was a bit dizzy for it, but did pretty good. 

Her appetite is starting to come back as well. She had some pancakes and fruit this morning. She has also been up a lot more. However, today I'm actually sleepy and she wants to talk. I guess that's a good thing, but I'm exhausted. Oh well, it is good to see her getting better. 

The doctors removed her Hemovac today as well (it's a tube that goes under the wound with slight suction to draw away the fluids building up around from wound).  

The PT is back again today. They will likely hold her until tomorrow or Wednesday. So they can ensure it is safe to discharge her.   They have her walking down the hall with a walker!  She's doing awesome. 

As for timelines:

- Pathology report takes 5-10 days. I'm hoping for Friday, but might be next week

- She has a follow up in 2 weeks with the doctor to remove the staples. 

- At that 2 week appointment, they will assess when she will be able to fly back to Seattle

- The kids and I will likely stick around at least until we get the pathology report. Then, I need to get them back to school. Plus, we are in the process of trying to buy a house and the cats are still home. 

There are a lot of things out of our hands at this point, so much is just a day to day plan. 

Getting better

She still doesn't have much of an appetite and is on regular pain medication, but, she has gotten out of bed a couple of times and was even making jokes a bit last night. :-)

Even though they said she may leave as early as today, I don't think that will happen. But, she is getting better. I was able to have a conversation with her today without her falling back asleep. She ate a little food this morning and had some orange juice. Beyond that, I've just been sitting by her side trying to keep her comfortable. 

As for me, I need a shower today ... getting a little ripe. I had some friends stop by last night as well for dinner. It's nice to get out of the hospital every once in a while. 

Thanks for all of the continued prayers. They are helping!

Back to the step-down floor

The results of the MRI are in. The doc says it looks great. Right now it is hard to distinguish the tumor cells from the swelling/scarring, so other scans will be necessary. However, it is good enough for her to be transferred. 

Right now, both her and her father are in the room sleeping. She will be in here at least tonight. The one doc said it could be as early as tomorrow for a discharge, but the nurse said the PT won't likely be here until Monday. 

So, we will wait to see.  This is only a minor wait though, the big one is much longer with bigger implications. Everyone seems so optimistic though ... I'm siding with them. 

My guess is she is going to sleep most of today, not a real fun visitation day, but that is up to whomever wants to say hi. She just might not say hi back, but I can speak on her behalf ... I'll be here. 

The day after

Yesterday in the ICU was primarily about keeping Steph comfortable. She had a good amount of pain, which is understandable as she just had her skull pried open. There was also the nausea from the anesthesia. She has never done well with anesthesia so this was no surprise either. 

At about 1am, she ate some applesauce and drank some ginger ale. For myself, I finally went to sleep. 

I woke up about 30 minutes ago. The doctors were doing their rounds. They gave her the typical neurological exam that everyone does when they greet her (what's you name?, where are you?, what year isn't?, squeeze my fingers, push on them, pull on them, smile, stick out you tongue, etc etc). They told me things are looking good. She has an MRI scheduled (they are taking her as I write), and will likely be moved back to the step-down unit. The physical therapists will then visit. She could be discharged as early as Sunday!!!

While I was sleeping the nurse removed her head dress so the wound can be expose to the air. Her arterial line was removed as well as her catheter. 

I have only been up for 30 minutes, but this has been a pretty good day so far!!

(Oh, and I just counted, she has 28 staples in her head)

She's back in ICU ... Yeah

After a 4 hour surgery, she is now backbin the ICU. They were able to remove about 95% of the tumor. There was a "finger" that was too close to the area of her brain that controls the motor functions of her left leg. So, instead of risking her ability to walk, they left some small pieces in. 

She is in the ICU, currently sedated due to the fact that she has some nausea and pain from the anesthesia and surgery. However, her initial motor skills tests and cognitive tests were all good!!!

Once the morphine wears off, they likely do some more tests, and then onto the 2nd wait ...

The first wait ...

She is now fully in their hands, and His. 

The OR is booked for her until 12:30. So, I'm sitting at Starbucks, avoiding cafeteria food. I've got my triple grande vanilla latte and a whole wheat bagel w/ cream cheese. I could use something a little stronger though I think ... Wonder if any bars are open this early within walking distance :-P. 

I call this the first wait, because when the surgeons are done, we start the second wait ... pathology. That's the longer and more stressful wait. That's the one that really has Steph worried. Pray that once she gets through today, the good Lord will have seen fit to fully remove this from our lives so that we can enjoy a long and happy life with Stephanie. 

Poor Mary Jane

Last night was rough ... Not for me, but the poor little old lady sharing the room with us. I don't know exactly what happened to her, but she has started getting worse. She pulls out her IV all the time (even with nuts on) and has some major neurological issues. Needless to say, I didn't sleep well either. 

The just took Steph to ore-op. I'm in the waiting room so I can see her one last time before she goes into surgery. 

God, please be with my wife today. Keep her strong and guide her surgeon's hands. Allow me to grow old with her, like we promised each other 10 years ago this May. Let her know that I will always love her.  Keep her embraced in you loving arms, and allow all of the prayers and love of our friends and family fill her and help her and strengthen her. 

God, also please be with Mary Jane. She has been mostly alone since I've known her, and hope that you will help her heal and return to her family. 

Amen. 

It seemed to start as a cold ...

Our family has been home from Seattle for the holidays. We have been staying with our good friend Kelsey while we are visiting everyone in PA. Monday night, Stephanie came home and said she started feeling a cold coming on. We went to bed, and when she woke, she said she felt worse. I got her some toast and some tea, and she stayed in bed. Around lunchtime, she asked for some more food. My mom came down to visit us, and she, the kids and I went out to run some errands and get some lunch. We left Steph home to sleep and try and feel better.  The kids were a little rammy, so on our return to the house, I had them run 10 laps around it's perimeter. On Noah's 4th lap (Maeve's 3rd), Kelsey came out and said Steph was sitting up and crying in her bed.

I went upstairs and Steph up and walking around, though speaking gibberish. I tried to talk to her, but it agitated her. She could not walk right and was falling over as well. I didn't know what was wrong but knew she needed to go to the hospital. I eventually got her into the hall, sat her down at the steps and had her slide down on her bottom to get downstairs. She was screaming and talking gibberish the entire time and continued to do so once downstairs. I thought if I could get her to the car, I could get her to the hospital myself faster than calling an ambulance. However, that's when she had her first seizure. My mom was there, which I am grateful for, as she was the calm one. I called 911 while my mom comforted Steph and placed a pillow under her head. 

The ambulance arrived, and Steph was once again fighting us and screaming. It took 3 EMTs to get her on the stretcher and tied down. I grabbed some things from the house and followed the ambulance to the hospital. On the way, it stopped on the side of the road!  I was freaking out. They started again, and then pulled over on 322. I was losing it. They eventually told me the truck was having problems and a new one was on the way to continue Steph's journey.  Once they moved her to the new truck, we were again on our way. 

I made it to the hospital and waited in the ER waiting room for them to let me in the back ....  Once there, Steph was actually talking normally and was calm, but something was off. She still thought we lived in Romansville, forgot about Seattle and generally seemed to have lost all short term memory. I also found out from the nurses that she had had another seizure while in the ambulance.  The sent her back for a CT scan, as I started contacting family about what was going on. A little while later, the the doctor told me that the scan indicated swelling on the brain, but not being a neurologist, he could not draw any more conclusions, and recommended a transfer to the Hospital at the University of Pennsylvania (HUP).  After a few hours, the transfer vehicle arrived and we were on the road again. I drove myself and found a place to park. Then another place to park, and then finally on the third try, I found the correct parking garage (one would think the hospital could afford better signage for parking :-). 

The previous hospital had given me the room to go to, so I headed there to find Steph already in her bed, fast asleep. An MRI had been scheduled for the next day and the neurologist had been given the CT scan for his review. I slept in her room in the ICU that night (Tuesday).

In the morning, I met her neurologist. He said the scan showed a lesion in the spot near where the pressure was indicated, but could not fully determine what it was without the MRI. Steph continued to stabilize, and they decided to am transfer her to the step-down unit after her MRI. 

We didn't get the results of the MRI until later that day. The doctor said she likely had a 3.5cm grade 2 glioma on the right side of her brain (a tumor the size of a golf ball). He said it was at the surface, making it easier to operate on. However, he could not say exactly why it is until a biopsy was done. 

Since we don't live in PA anymore, we had a decision to make: surgery here or in Seattle. Weighing the pros and cons, and the possible risk of another seizure mid-flight, we decided to have it here. 

So, now our trip to PA has been extended slightly, and we are spending our third night in the hospital, awaiting surgery tomorrow at 7am (Friday). We are told the prep time will be about 1 to 1.5 hours, and then the surgery another 2-6 hours. After that, she will have to come down from the anesthesia. So, the whole process could take most of the day tomorrow. We will then spend the night in the ICU again, then the step-down unit again for the 2nd night after surgery. At that point, it will be up to the docs and the physical therapists to decide when and where we will be discharged. 

The tumor will be sent to pathology once removed. It will take 5-10 days for us to know exactly what the tumor is and its makeup. That will also help the team of doctors determine further course of action. 

While all of the above happened, and wonderful group of friends and family have been praying and supporting us. Thank you all so very much. Thank you for watching our children while I watched out for their mother. Thank you for he kind words of love and tenderness. And thank God for His perfect timing, allowing us to be in PA with all of you during this difficult time. 

We love you deeply!

I will post more as we move through the surgery and into recovery.