Gray Skies and a Great Dad

Sleeping with the windows open is one of those small pleasures in life... like camping - but with a mattress and indoor plumbing.  I love to feel the cold air across my face, especially if I am covered by lots of warm blankets.  Springtime is the best - I get to hear two of my favorite sounds; birds chirping (they wake up very early) and rain falling.

Practically in our backyard!

I do like the rain - I always have.  Twenty years ago we told people that we were moving to the northwest.  They warned us about the rain... what's the big deal?  I love rain.  ...I had no idea what we were in for.   Growing up in the Rocky Mountains meant rain might come in the summer afternoon.  Beautiful, billowing clouds would roll in and produce wonderful a heavy rain complete with thunder and lightning (the best part!).  Then it would roll away and we could all go back outside, smell the clean air and enjoy our evening.
Here in the northwest faceless gray clouds slink in around mid-October and dissipate sometime in June... or July.  It wasn't so bad when we lived just west of Portland, but now... no matter the surrounding weather... our little community in the country seems to be forever sitting in a cloud bank.  The worst part?  No thunder and lightning!  Just gray skies and wetness....(seriously, we sometimes go 30+ days with NO sun).
I am NOT complaining - and here is the reason why... I decided that this year I would try to not complain.  I have developed a bad habit of grumbling about the grayness of winter - and most people have probably heard me do so this year, but I know that I have made huge strides forward.  My success can be attributed to the following two techniques:

It's worth the waterfalls!

1.  I fall back on the strategy I employed for many years - that winter it is all worth it, in order to enjoy those amazing summers in the most beautiful part of the country.  I love waterfalls and we have more than our fair share - how else could happen without all of this water?

Sometimes the trails
get a little wet...

2.  This one has been the most important and I have to begin with a story.  I grew up in many different western states and this meant driving "home to California" through the Mojave desert.  My parents moved back to California after high school and I went to college out of state.  Following my freshman year, my dad came to drive me and all of my paraphernalia back home for the summer.  As we drove through the Mojave desert I began to complain about how barren and ugly it was.  Dad is usually open to my ideas, but he wasn't going to let me get away with that one.  "Everyplace on Earth is beautiful, but sometimes you have to look at little harder," was his reply.  Undoubtedly I put up an argument, but he was right.  We discussed the Joshua trees and wide open spaces and I saw beauty I had never taken the time to notice.  That drive home has had such a positive affect on my life - and therefore the lives of my children.  As I opened my eyes to the beauty around me, beauty seemed to appear everywhere; sometimes grand vistas and sometimes in miniature such as rocks and leaves.  I have even been able to see beauty in southern Idaho!  (Actually my favorite part of southern Idaho is the 80 mph speed limit so that I can quickly get through that particular form of beauty.)
I do NOT love gray skies, but I have been working at appreciating my little area of the world and the unique winter sky that it provides.
While I am on the subject - during that same summer that I had learned to stop complaining about the desert - we were living in Atascadero, CA.  Here the heat can be almost unbearable and I said as much to my dad... Dad had grown up in Paso Robles - a town to the north.  He had lived on a ranch and had to work in the heat.  He told me that he had learned to just embrace it.  Rather than thinking about how miserable it was, he would just take a breath and say to himself, "Wow, I really love this heat."  Initially, I am sure I rolled my eyes - but I actually started to do this right away and it really helped.  I think that this lesson is harder to apply than the search for beauty and I often forget  - but when I remember to try; it works!

Dad was really teaching me to have a positive attitude.  Whining and complaining are far too easy and I think that the world has had just about enough.  I get

1980 - Love the hair!

With Dad and Tom on Grandpa's
Paso Robles Ranch

tired of it in other people, and I am ashamed when I hear it in myself.  It is no wonder we are supposed to honor our parents - there are so many great lessons that are just ingrained in our character because of their influence.  I began writing today in celebration of springtime birds and rainfall - and now I know that no celebration of nature is complete without a celebration of being raised by a father who showed me how!

Enormous Benefit and Entertainment

Cancer - I am getting tired of the subject... so this should be my last general cancer blog for awhile - I hope!  I have to write this - it is one of my most powerful lessons learned, but it is also quite personal to me.    "Enormous Benefit" is the title I have chosen because I heard the phrase today in church.   Our good friend, Jack, was speaking on the subject of the Atonement and trials--- he has certainly had more than his share (including stage 4 cancer).  He pointed out the enormous benefit that trials are in our lives... Can I just say that if we lived in the South I may have stood up and shouted Hallelujah Brother!!
Regarding the enormous benefit of trials, I am going to include what I wrote following Greg's treatments:

This is the experiment I have tried and found to be most helpful:  I knew that the trials in my life had proved to be some of the most positive experiences when they were over.   I was always most thankful for these times of life because I had become stronger and my relationship with the Lord was strengthened as well.  At some point during the first month or two I was thinking about this.  I was also aware that this experience would bless Greg's life in the future even more than mine.
  I wondered why should I wait until it was over to be thankful???  I decided to be thankful during the experience rather than waiting.  It was difficult at first, but soon changed my way of thinking and the way I viewed things.  
At the same time it cannot be denied that there are many, many difficult times involved... but why must difficult be so awful?  Isn't strength a good thing?  Another positive aspect of trials is to later to able to help a friend who is going through a similar experience.
One thing that I struggled with a time or two was watching Greg's friends and other teens have a fun school year while he lay in a hospital bed, even when he was at home he was sick so much of the time.  Sometimes I resented their freedom and wondered if they ever thought about Greg's great success at just being able to take a shower with the use of a shower chair.  These thoughts never lingered more than a couple minutes.  I just had to remind myself of the truth that I had uncovered - this was all making Greg into a stronger individual - and those negative thoughts would just go away.
I could have chosen to dwell on these things, but that is not the experience I had chosen for myself.

What I remember about that decision is this... I knew that the concept was a true concept and that I would find much to be grateful for over the years.  However, I felt it was important to be grateful as we went along.  That is one to realize and another thing to implement.  It took several tries before I could include the words "I thank thee for Greg's cancer" in my prayers.  I really did want to say this; and found myself unable to get the words out for three days.  Saying it, and meaning it, gave me strength.  I believe that we were one month into chemotherapy at the time.  Here is the miracle that I recognized later - when we learned that Jackie's tumor was malignant - I didn't want it, I didn't welcome it... but I was grateful in a very sincere way.  I just knew immediately that this was God's plan for her and I was thankful, even in the midst of my sorrow.  To someone who has not had this experience, it may seem strange, but I think it is beautiful.  I had been changed for the better.

Here is a quote I ran across yesterday:  "The Purpose of Trials - Our Heavenly Father, who gives us so much to delight in, also knows that we learn and grow and become stronger as we face and survive the trials through which we must pass.  ...Such difficulties allow us to change for the better, to rebuild our lives in the way Heavenly Father teaches us, and to become something different from what we were - better than we were, more understanding than we were, more empathetic than we were, with stronger testimonies than we had before."  Pres. Thomas S. Monson

Humor Helps!

If this is the last that I want to talk about cancer for awhile - I am going to finish up with one of my favorite stories.  I will try to find the picture of Greg in his mad scientist wig.  A little background - when Greg was diagnosed he made up this mind "to be a breath of fresh air around that place [the hospital]."  He really was too.  The nurses used to argue about who would get to be his nurse because he was always so pleasant.  Humor and happiness played a large part of his treatment.   Mornings in the hospital were always very busy with visits from nurses, nurse practitioners, CNAs doing vitals, the teacher, and a good sized team (or 2) of doctors with their medical students.   On this particular morning he woke up and put on his mad-scientist wig before anyone came in.  I helped him arrange the blankets to cover the gray hair so only the bald head was exposed and he turned away from the door.  The various health care worker entered his room, saw that he appeared to be asleep and tip-toed over to my side of the room to talk quietly.  When they were very near, I would say that he was just waking and he would pretend to wake up and stretch - slowly letting the blankets fall away.  It was so funny, we got some great reactions.  His nurse practitioner, Amy, came in before the team of doctors and she had a quite a laugh.  She then went to the doctors and asked them to look closely at Greg's forehead because she was concerned at something she had seen.  They came in and leaned right over before getting the shock.  They were all doubled over in giggles.  Amy brought in a few other people that morning...  she loved the joke.  Greg pulled it all off without even a grin, he acted totally normal.  I was probably the more amused than any of them.

Our favorite twins came every week!

Elvis sighting!

Watch With Me

I am about done writing about cancer for awhile.  For some time I have been wanting to blog about things I think about and have learned in my life... turns out that right now I think about cancer, and have a lot of lessons that I have learned in the past or am now learning.
Last week my sweet husband, Mark, shared a thought with me.  He was sitting in church (Jackie and I were still at the hospital) and pondering on the idea of Christ suffering in Gethsemane.  Christ asked his disciples to "watch with me."  
Then saith he unto them, My soul is exceeding sorrowful, even unto death: tarry ye here, and watch with me” (Matt. 26:38).
Christ did not go alone to the garden.  He brought trusted friends.  He had to face his agony alone, but he brought friends along to be with him beforehand.  When people ask how they can help our family, we are at a loss... it is hard to know what would help??  We have many things that we must do, things that must be faced.  Yet, the most wonderful thing is to know that we have friends "watching" with us - and most importantly, we see that we much "watch" with our friends.
I thought that the thought was beautiful and I am grateful to have a husband that takes the time to have deep thoughts.  This past week I have learned about a new trial some of our extended family members are undergoing and it seems almost beyond my comprehension.  We really do all have our own adventures here in life - and I will always choose my own.  But, I can watch with them.  I can pray that they have the same comfort that we have felt.
A week at home has gone by - I came home from the hospital with a day's worth of adrenaline left and I caught up on many things.  On Tuesday, I crashed.  My first inclination is to muscle through it - but I remembered past lessons learned and I just embraced it.  I sat with Jackie, read a book, took a nap - and did just enough work to keep the home running.  Wednesday I was limping.  Thursday and Friday the fog lifted and I thoroughly enjoyed several visits from good friends.  Yesterday we were outside as much as possible - and I worked as hard as I could and today I am sore, but feel great.  I loved the hard work, but I am also pleased that I let myself relax and heal earlier in the week.
Lessons learned... I am blogging about this so that I can re-read and remember in years to come.

Our pre-op date to
a Chinese Restaurant

As Greg completed chemotherapy I wrote down many of my thoughts - here are a few of them (condensed) regarding how we dealt with all of that - I expect that it will be helpful in many situations:

We decided early to be realistic about the stress that cancer would put on our relationship as a couple.  We know from the experience of others that it can draw you closer or tear you apart.  We chose to be closer.....
We also realized that  life would not be able to go on as normal, and we had to choose what to let go and what to keep.  It was important to let the other children keep some activities because their lives would be very disrupted and they would need to have things to look forward to....We had to limit the number of children in the house due to Greg's low immune system, but tried to have friends over as possible..... Also for the children - we tried to make this all an adventure that the family would have together.  Going to the hospital was fun..... 

We thought this "fortune"
was well timed.

To help Greg and the rest of the children forget our troubles, we included all of the children in doing small acts of kindness for people...  This included making baby blankets to be send around the world as well as making cookies for our neighbors.  Once we bought about 20 large Costco containers of Jelly Bellies just to brighten the day for our friends.  We knew that we were having a trial, but so are others - theirs just aren't always so apparent.

Back to the present.  My favorite lesson learned during the past few weeks has been the notion of Trust.  That word just filled my whole being as Jackie was in surgery and I had those hours by myself.   A few days ago I read this scripture:
...for I do know that whosoever shall put their trust in God, shall be supported in their trials, and their troubles, and their afflictions... Alma 36:3
Continuing to practice Trust - that would be a good daily goal so that I will be ready each time it needs to be truly put to the test.

ICU after the ventilator and other
machinery was removed.
Nice and Calm.

Now for our medical update - Jackie is 1.5 weeks postop.  She ventured outside yesterday to watch us work for one hour.  It completely wiped her out, but felt good.  Her pain is changing and getting worse in some ways as she moves around a bit more.  Tylenol handles it, so that it good.  She had her worse pain yet on Saturday as she woke from a nap with a sneeze - her first sneeze and she didn't have a moment to prepare.  Now there was truly some recovery time after that---yikes.  A milestone today - I left church early to come home and care for her... after her shower she decided it was time to put on a little mascara.  Yay!  Lounging about always seems that it would be appealing, but Jackie can attest to the fact that it gets very boring very quickly.  Our post-op visit isn't until the 31 of March.  Both our thoracic and orthopedic surgeons have families on spring break until then.  I am anxious to hear the pathology report, but I guess I will have to wait.  I have also heard from the neurosurgeon and Natalie will not be going in for an appointment until the 23 of April.  She isn't too pleased to have it pushed so far out, though I assure her that it is a good thing to not be rushed - it certainly helps my anxiety level.  I have been rushed before and it does not mean good news.

Flashbacks... can be helpful...

Flashbacks - that is what a friend from out of town told me yesterday.  She is right.  I began to tell her about my PTSD and she went right into the combat scenario that I had already blogged.  She explained that our mental state was because we were having "flashbacks" to 2011.  It makes so much sense.  I don't know that you can get to be our age without having some pretty "down days".  Certainly she could relate to what I was experiencing.  Therefore, my friend and I were able to laugh about how it feels to stare at a mess ...and care just enough to hope to have the energy necessary to step over or around it...  I love to laugh.
Beyond my bad day - it was a great reminder to me of what I know other moms are feeling right now.  The best part of getting through a trial is to be able to use your new information/experience to help people in a similar situation.

So young - so brave - such a handsome man!

I was married when I was 22 years old.  We were both full-time students and lived in a little basement apartment about a block from campus.  My sister lived in the dorms just a half-block away.  One night I sat and talked with her roommate about some sort of romantic trouble she was having.  I had been pretty good to avoid romantic drama - but I did have some experience...and my past now came in handy.  Instead of telling her to buck up, be strong, it doesn't matter - I could relate and share with her how I had dealt with similar issues.  That night I came home and I was able to identify three different times in about a year that I had been able to talk with and help others who were struggling.   I could help them only because I had gone through something similar.  I cannot remember what the other two situations were, but I remember that there were three.  I know I had very much disliked the three events of my own past, but suddenly I was so grateful that I had gone through them.  This was the first time I had looked at a trial as a positive opportunity.  I think I may blog about that soon, but for now I just keep thinking of how we are put in the path of people who can help us and people that we can help.

Only one of those basement
window was ours

Just a couple weeks before Jackie's surgery, a friend of mine had her beautiful, soft-spoken, 5 yr old daughter in the hospital for 12 days.  A brain tumor had been diagnosed and removed within two days and there were complications which will affect her always.  When I learned of this (the night before surgery), I could not sleep.  I didn't sleep well for several nights as I thought of my friend and how it feels to be a mother in a medical emergency.  The day after her surgery we learned of Jackie's diagnosis and I was rather distraught myself - I wish I had been in a position to help her more - thankfully she is in our same congregation and we have so much support.  Jackie is actually her daughter's piano teacher, and they both have rare tumors on the same scale of occurrence.  They both were blessed to find out these tumors had been "encased" by membranes, thus strengthening their prognosis.  We have both been the recipients of many prayers and much fasting.  We have been able to visit and text and share our stories and blessings.  When Jackie was preparing for surgery on Tuesday, my friend texted that she had been anxious - thinking about what was going on.  I said, "Welcome to Moms Who Know Too Much."   When Jackie's rescheduled surgery was happening on Thursday, my friend shared how this time she felt calm - and I felt that we were both members of the club called Moms Who Know about the Gifts of the Holy Ghost.  So now I am thinking... if I am having a bad day, she must be having a lot of bad days - and as soon as my fog lifts, I am going to think of some sort of sunshine to send her way...

Our basement bathroom -
you could sit on the toilet,
brush your teeth, and
wash your hair -
simultaneously

I have a handful of friends whose children/family members have suffered through serious medical difficulties.  I find that we have a special connection.  I guess we build relationships when we can relate to one another.  Of course there are a lot of people in my life that have very little in common with me, but I still care about them.  We also don't have to "relate" on a "sharing hard times" level.  I enjoy talking with mothers of large families.  I connect with people who like to travel with those large families...especially if they listen to audio books together while traveling.  I can relate to people who avoid fast food --yuck.  I have a great time laughing with couples who lived in little basement apartments as newlyweds... good times!
Life is interesting.  Our experiences are interesting.  We all have so much we can learn from one another...

Why Isn't Breakfast Green?

Jackie - Halloween 2000

"Why isn't breakfast green?" - a legitimate questions asked me by Kimberly.  After all, breakfast on St. Patricks Day has been green every other year of her life.  (Maybe not 2011 - I know we were in the hospital around that time because I remember decorating Greg's room green. )  All I can say when it comes to Green Eggs & Ham.... I would not, could not.... actually we do green pancakes and green milk.  Truth be told, I didn't even run upstairs to change into green clothes like I have done every other year since my children have been in school.
I am definitely not functioning too well.  I am not upset, or distressed, or worried, or anything like that.  I am just dragging about... so completely drained... and it is like I am right back in the middle of chemotherapy.
Here is something I wrote in January 2011:

A few days ago Mark and I attended a Candlelighters Family Support group.  It was really quite boring but they had free pizza... anyway, the topic was Post Traumatic Stress Disorder and we were rather surprised to see parents of cancer patients on the same short list with combat soldiers, natural disaster survivors, torture victims... obviously not as high on the scale, but it kind of validated the "traumatic stress" that we have.

The weekend after I learned that Jackie's tumor was malignant was hard.  I felt exactly as though I were being sent back into combat.  I was weak and just felt like pleading, "No, no, no!  Please don't make me go back in there... I know what it is like and I really, really don't want to do that again!"  Well, of course there is really no alternative, so we got right back into it.

Christmas Angels

 Counting on the idea that there will not be follow-up care, it seems that surgery/recovery/follow-up is a relatively easy event.  (The nearest proton-radiation facility is Seattle.)  However, Mark and I have expressed many time how we feel right back in the thick of Greg's cancer - same surgeon, same hospital - those are external similarities.  It is the mental part that is the worst... I have felt it more since I have been home.  Hitting snooze on the alarm (over and over), staring at tasks to be done as though they should have some sort of meaning to me but don't, snapping at the children to stop snapping at each other...  Haha.  This all sounds rather pathetic, and it isn't so bad... but I do have a headache.  And I didn't make green pancakes (though I did pull off Bangers & Mash for dinner, having previously purchased the bangers).
The interesting thing to me is how we fell right back into the heaviness of our previous cancer - I usually say "our cancer" or "when we had cancer" because it affects everyone.  During that time we were so happy to end our treatments, and then so dismayed that the following year was much worse than the year of treatment!!  It took real effort, many personal prayers, and a long time to get us all back to an acceptable level of functioning.  (I hope this is a short time!)  I learned a deep respect for trials - and patience.  I know we must have appeared relatively normal, and it makes me wonder just how others are doing.  What struggles do they have that we don't know about?
When I had my fourth child I thought that I would never have a full nights rest, a clean house, or a sane mind again.  That was tough!  Then I would go to church all dressed up, my kids would be dressed up (that was a struggle), and people would comment on how well I managed, etc. etc.  It was then that I began to realize that maybe all of those other "put-together-looking" moms were also having a hectic life also.  That changed me - maybe I became less intimidated, maybe I was more caring, maybe I learned new way to relate to people... I don't know... I just know life changed.
I am a happy person.  I have a happy life.  I should probably use the word "content"to describe myself.  I know that life can have some really tough times, and if I keep my relationship with the Lord intact; if I maintain a vital and joyful marriage; if I give the bulk of my time to family life...and eat right/exercise... then tough times can be happy times.
Now I wonder this... why is it easier to talk about tough times?   Maybe it is just because we can all better relate to our rough spots in life, we certainly all have them.  Maybe it is because giving service brings joy, and tough times provide opportunity for service?  Maybe it is because happiness takes a lot of effort and people don't want to be reminded of that?   I enjoy reading biographies of successful people (people who are successful in achieving the same type of goals as I have).  I like to learn from them.  
 This I do know - when times are tough we really need other people.  We need them to listen and to care and to pray and to drive children... picking up the pieces we drop.  I love my friends and family.  I am in awe of their support and kindness.  I want to be more like them.
Jackie is almost weaned from the walker.  She slept through the night without waking up for pain meds (though she wishes that she had).  She is cheerful and a very good sport.  On her first night home she tried to sit up at the table for dinner, but that won't be happening again soon.  We are taking things slowly and carefully, and she makes great improvement every day.

Humor in the Hallway

Within 24 hours of having the chest tube removed Jacqueline is improving by leaps and bounds.  That must have been such a source of pain!!  A complete lap of the cardiac ward this morning with physical therapy was a major milestone.  A couple of hours later she was ready to try it again and Kimberly and I were more than happy to accompany her.  Turning the corner, we met a little old man pushing his IV pole in the opposite direction who began a conversation that made me think of inmates; "How long until you get out?"  "What are you in for?"  He lives four or five hours away and has been here for three weeks waiting to get on a list for a heart transplant... then he looked at me and said, "And I am just your age!"  Uhhhh - I figured I wasn't looking my best... but a little old lady?  Turns out he is only 55- guess he wasn't looking his best either - but, uh, he still has me by 9 years.  Jackie had a good chuckle about that one.  This isn't really a good thing -- chuckling hurts!  Things improved  as we were leaving and her nurse expressed the right amount of surprise that we had six children (and mom is so young).
I have been thinking, though, of the changes that cancer has brought to our lives.  I know that I am not the same person I used to be.  Here is a simple example that has teased me all week.

A friend brought us dinner a week ago and we began to discuss her upcoming vacation to Illinois.  We laughed as the kids and I recalled our own trip to Illinois about 9 years ago.  Eight of us in a minivan hitting every major landmark between home and St. Louis.  We saw Yellowstone, Mt. Rushmore, Laura Ingalls sites, St. Louis, Nauvoo and then headed back west seeing every Church history site we could think of.  We were in the car for two weeks and we only ate out three times (once after the steam train left us off in the Black Hills for a few hours, once for Greg's birthday, and once about an hour from home).  I took our crock pot and frozen roasts, etc. and then made sure we stayed two nights in cabins and in places with kitchenettes.  Now I laugh, just wondering how I ever planned and pulled that off... the summer after Greg's chemo treatments I couldn't even imagine booking a hotel for the family.  We splurged and went on an Alaskan Cruise just to be alone for a week and not have to think about any meals at all.
I loved both vacations!

Cloud Break - and HOME!

The ninth floor of Doernbecher Children's Hospital is connected to OHSU by a short skybridge.  We like to walk here and see that Greg's photo is still in the display case.  While he was undergoing chemotherapy he created this layered-glass tile and wrote the following:

Cloud Break - This piece of art simulated the struggle between good and evil.  As waves pound on the rocks in the storm, lightning crack and water surges into the air.  Behind the dark billowing clouds, the sun is constantly shining, and as the waves are tearing, the clouds break and the sun shines through.  For a moment the wind and storm recede and the sun fills your view and the world seems calm once again.
This analogy is one that models my cancer treatment.  As nausea and sickness threaten my well-being, they are like the waves smashing against me.  But as the storm gathers, sunshine breaks through and lightens my life.  The sun comes in different forms; friends visiting, cards from well-wishers, and also the many helpful arts and crafts activities throughout the weeks.  It is through these that my mind can be occupied with new, creative and pleasant thoughts; and I can work with my hands to make beautiful things.

This was all done as a school assignment in the oncology ward.  They have a full time teacher employed to help the patients with their work.  She either works with their regular school teacher, or tutors them privately if they have had to drop out for the year.  Some kids simply miss an entire year for treatment and recovery, others just a few weeks.  Greg was taking classes full-time at Clark Community College in order to graduate from high school with his associates degree.  He had also done this his junior year so he had enough credits to graduate.  He began treatment in October, so we let him know he could just stop school altogether, and still be ready for BYU in the Fall.  He wanted to finish with the AA; mostly to say that he had finished what he started out to do.  He loved it when he was well enough to go and visit with the ladies at school.  Art was particularly stimulating and when he heard it may lose some funding, he wrote the little essay to go with the tile.  (Most of the art he did was with CHAP [Children's Healing Art Project] because they came at least once during our stay and would bring supplies to our room).
Chemotherapy for Greg lasted 29 weeks (Oct-May).  At first our schedule was:

CHAP

Week 1: 3-4 days inpatient stay
Week 2: 4-5 days inpatient stay
Week 3: 4-5 days inpatient stay
Week 4: Clinic visit only
Week 5: Clinic visit only
During the final three months we lost week five - this was tough because it took away a week of recovery. As treatment wore on, Greg's immune system was about wiped out and he was unable to be out and about. For several months his bed was in the family room and he had to use a wheelchair.  He made a very conscious effort to stay positive and  to better appreciate even the slightest amounts of "sunshine."

Greg's sunshine thoughts are sweet.  Our lives have so much rain, and waves and darkness... but then the sun breaks through and energizes and gives new perspective.  Trials are sometimes so large we cannot seem to see our way around them; sometimes they are just daily annoyances.  Sunshine will always come eventually. Sunshine, in Greg's mind, always centered around people and activity.  Sometimes we are in desperate need of sunshine, and at other times we need to be the sunshine for others.  Currently the rain is pouring down on our home, but our lives are both lighted up and warmed by the sunshine that comes to us through all of the meals, gifts, cards and especially prayers of so many people who care - some who don't even know us!
We are home!  Here is a photo of Kimberly with a wheelchair full of sunshine!

Angels and Accommodations

Waking up at home this morning with no place to rush to... what a luxury.  The night in ICU turned out to be not quite as bad as anticipated.  The nurse saw me and my blankets and offered to go and find a better chair.  She found one that flattens out to a bed; it took us both awhile to figure it out.  Luckily I had seen David operate a similar one on the oncology ward three years ago.  It wasn't too bad - about 8 inches too short and similar to being on an airpad while camping...a broken one with leaking air.  Exhaustion beat out over any sort of need for comfort and I was very happy to lay flat.  Besides, I was up to stretch every hour or so; as Jackie needed her foot massaged and her elbow gave her all sorts of trouble.  For some reason they had to take out the arterial lines about 30 minutes the lights went out (some of the lights) and then the catheter came out at 2 a.m.???  The funny thing was that I was only a couple feet from Jackie's bed so that everyone that entered the room to help her also hovered over me.  That was lovely.  Then the icing on the cake -- in order to stand up I had to scoot toward the end of the bed (past armrests) and get up quickly before it totally folded up on me.  I learned to climb up over the armrests - just a step more dignified than the folding action.  Good memories.
We were up and going by 5.  Jackie's blood pressure had dropped quite low so that when they tried to get her on her feet, her vision went black.  Luckily she had her central line so they could empty an IV bag quickly - It worked rather well because it gave her a couple more hours before having to get out of bed again.  Mark came to spend the day with Jackie around 9:30.  By the time I was home he had texted to tell me that her central line was out and she had been transferred to the floor.  I had some nice hours at home to shower, take a nap and enjoy some homemade pretzels that David made.  Nap and shower were amazing, but mostly I enjoyed those pretzels - he asks me to make them often and now I see he can do it on his own.  Yummy.  We got through afternoon driving and were able to pick up Natalie from tennis and head back to hospital for a little family party.  We bought the new Thor movie, but it isn't very exciting on the small screen so we resorted to our favorite hospital family activity -- playing in wheelchairs through the now deserted hallways.  Well, not the whole family.  I tend to stay behind.  It is a little unnerving that we know so many back hallways, nooks and crannies around OHSU/Doernbecher hospitals.  We spent so many holidays and late nights here with Greg... Mark always knows how to entertain the children.
He also volunteered to take the night shift - thus my nice morning waking up at home.  Kimberly asked if she could join me today/tonight.  This has been fun - I like to have a friend while Jackie sleeps.  We enjoyed exploring the OHSU campus outdoors in the sunshine.  This new room is very nice.  Plenty of space, two large windows with a great view, a recliner that lays back for Kimberly and a padded bench that should make a decent bed tonight.
Medical update is all positive.  Jackie has her chest tube removed this morning and it has made all the difference.  I guess those things are just incredibly uncomfortable - a large, rather stiff tube with about  8-10 inches inside her chest.  UGH!  Her comfort level has greatly improved.  Our doctor gave us great news today when he predicted that she should be able to go home tomorrow!  Hooray!  This is a couple days earlier than I anticipated and I hope that he is right!

Mt. Hood in Background

Our room has a nice, wide window ledge.  While Mark and I overlapped our hospital time today, I gathered her gifts and decorations and placed them all on the ledge to enhance Jackie's view.  It looks cute - and gave Mark something to laugh about because he spends his time gathering things and putting them out of the way.  He did mention that I should maybe rethink putting the chocolates in the window - in case they will melt.  I assured him they would be fine because he has the temperature in the room turned down so low.  When the doctor came to visit he chatted with us about the nice room (I had implored him to let us recover at Doernbecher with the nice accomodations); and he admired Jackie's decorations.  As he left he warned us that the chocolates in the window might melt.  Mark's response ---"I knew I liked that guy!"  Seven hours later - the chocolates never melted.
The main reason I stayed in bed enjoying home-life this morning was that I had woken up pondering the idea of guardian angels.  I believe in them wholeheartedly, but don't think of them often. When I do, I am intrigued - seriously one of my favorite things to think about.  I think that they must be individuals who know us; family members I mean.  I only know a small handful of people who have passed, but there must be countless numbers who know us.  On Tuesday, after the doctors had talked to us, we were once again sitting in the family waiting area and Mark must have been thinking the same kind of thoughts because he said, "If my dad could be in there helping... I am wondering what sort of help he could be.  He certainly doesn't know how to perform thoracic surgery.  But then I thought that I could see him saying, 'Stop, let's not go any farther.  You are all done for the day.'"  Something like that.  I had to smile. It totally fits.  Mark's dad was almost always in some sort of leadership position, when he spoke everyone listened.  His was a soft, lovable type of authority and I appreciate the image of him being here helping us.  Not today though, today he should be spending some time watching his sweetheart celebrate her 80th birthday with all of her sons (minus one) who have flown in for the occasion.  Family ---another of my favorite subjects.

Run Over By a Car

Mark has gone home to spend time with the children.  Jackie asked that I stay with her for the night, so I am prepared to make the most of these lovely chairs.  One has been replaced with a high backed chair that has some sort of spring in it.  Not bad.  Not good.  I am glad that I am allowed to stay with her at all.
She has been sleeping peacefully for some time now.  Here are the first three things that I remember her saying.  1. "Mom, may I please have a foot massage?"  2. "I think I have been run over by a car! You can put that on my Facebook."    3. "I woke up without a tube in my mouth!"
Her nurse just came in and told me that once we are past the first 4 or 5 hours post-op that we can all relax quite a bit. We have past that. I sit here and watch her and listen to her breathing so peacefully and all on her own.  I know that she has been cut open and is going to be very sore, but Tuesday night was so much worse.  The noise of the ventilator and all of the doctors and respiratory therapists coming in and out.  There was so much more stress and concern.  Wednesday it was just enjoyable to hang out together - no worries and no responsibilities.  Today has been calm and hearing such a good surgical report seems to have tricked my mind into thinking it is all over.  I want to be able to take her home and get back to normal.  I need to work on this patience thing... obviously since I keep having opportunities presented to me. Besides, right now this is our normal and quite frankly, it just isn't too bad.  All of the other ICU patients near us are so much worse off than we are.  We can hear enough and see so much more action going on in their rooms.  This keeps everything in perspective and I am so grateful that we have such good health.  Jackie agrees. During her first night here alone the man across the hall was confused and yelling, "Murder! Murder!"  Bless his heart... Bless her heart... that was a long night.
Sometimes I think I am too nostalgic, sometimes not enough.  If I could go back and capture a moment in life what would it be?  I usually long for those weekend mornings when we would sleep a little longer and end up with six little children climbing into bed with us - cuddly at first, and then so wiggly that Mark would be forced to get up and get away.  I would try to hold on to the memory, knowing (but not comprehending) that they would soon not all fit in the bed and (horror) eventually begin to leave home.  Their wiggles could always hold out longer than my sentimentality and soon I was begging to have them let me out.  They would cheer in triumph over their conquest of our bed and then proceed to do whatever children do to blankets, sheets and pillows until our room would match theirs.  They could then run, play, climb, fight, jump, --all day ---with chaos in their wake.  Hmmm, maybe my nostalgia is cured; but I did really, really love those cuddly times.  Perhaps that is what I am trying to capture as I sit here watching Jackie.  I want her to be young enough to hold her on my lap and try to make her pain go away with kisses.
In reality I wouldn't go back.  I loved and adored my children when they were little.  I love and adore them even more as they grow, probably because I know them better.  This is one of the reasons I like to think of life as a journey.  We do see and experience wonderful things, but we don't stop and stay because the road ahead is filled with new adventure.  Adventures like a night in a chair in ICU...

Good News!

Our surgeon just came looking for us - at first I felt a deja-vu and a stomach drop, but this time he was wearing a big smile.  Surgery ended earlier than expected and was quite successful.  Let's see what I can remember...

They expected a large incision running from front to back and instead made two smaller incisions - one on the side and one along the spine.  The muscles in this area run up and down so they didn't have to cut through them.  This will help recovery They expected to remove a rib and instead spread the ribs on the side and removed a couple inches of three ribs right as they attach to the spinal column.  They worried about the way the tumor was pressing on the aorta - and found that the pleura covering the lungs was completely unaffected and the tumor was between it and the pleura on the chest wall side --I think I am getting that right.  It means that it was enclosed...protected...and everything was protected from it!  There were only a few small vessels coming from the aorta into the tumor which they were able to close off.  Otherwise it became a non-issue.  Let's see--- they used some sort of special instrument to take away small amounts of the three vertebrae that were affected until the margins came back clean.  Not very much bone was removed and she did not need any sort of stabilization.  This news was some of the best because it means no metal of any kind and she will be able to have nice, clear MRIs for follow-up care.  He said they even took the time to remove the little clamps off of those blood vessels and stitch them  - all for future MRIs.  He also had something that he could use to run over the surface of all the bones and essentially cauterize them - killing any sort of malignant cell that might have been left behind.  Her lung inflated and she is doing much better than expected.  They told us that she would probably be on the ventilator overnight - but are already thinking that the breathing tube can come out during recovery.  She will be so happy about that!  She was mentally preparing for the panic of the tube and being restrained again.  They do want her to stay in ICU for another night to monitor her, then a couple days on the floor.  He is quite certain she is not going to need radiation and is prepared to state a strong case to the "tumor board".  Chordomas rarely metastasize, but they do have of history of recurrence.  He says the risk of recurrence is preferable to the risks involved with radiation in a Li-Fraumeni patient.  It would be amazing if we could end this adventure with surgical recovery and no further treatment!  I know prayers have been heard and answered.  

They suggested we go get some lunch since it will be awhile before we can see her.  We are both smiling!

He Makes Me Smile

He Makes Me Smile

Well, this is a kind of fun and interesting moment in my day.  Here is am sitting next to Mark in the family waiting area and he is reading my blog for the first time.  I think he is about the last of all my friends (and he is my best friend) to read it.  He is chuckling and I am trying to think of what I have written that is so amusing.  I wonder if his ears are burning while I type about him.
Hmmm, I am thinking that I should plan to devote a lot of blog posts to him over the years because he is my favorite subject.  If this blog is about my life and all of the wonderful things that happen to me - he tops the list.  I know my morning was going well, but when he arrived and sat beside me it all got just a little brighter.  I want to get this little blog post published before he is done reading...

addendum - well, good thing I said all of those nice things, because he is now editing for me.  I really don't mind because I am constantly finding typos that other people make and it drives me crazy... so I have gone back and fixed them as he shows them to me --Now, he knows how much I just love to be corrected, so he is being very diplomatic--- luckily we both know that I would be correcting him in a heartbeat (and without so much diplomacy). He does promise to not suggest ways to "reword" it - I told him that is good because this is just me talking. So I am smiling.  We both are.  (Otherwise I wouldn't mention it.)

Good Morning - Literally

As Jackie and her nurse waited to the elevator to go downstairs surgery, I chose to take the stairs up to the waiting area.  There is a little window in the stairwell and I saw the most amazing sunrise!  I hurried to get to the sky bridge between OHSU and the VA Hospital to get a better view before it faded.

Sunrise in Portland - Matches My Feelings

Skybridge to VA

 It was magnificent and I felt that it was made just for me. (Obviously my phone is inadequate to capture it, but I am glad to preserve the memory. I also snapped a photo of the skybridge which was uncharacteristically empty.  I loved the moment of solitude and beauty - like a little gift at the start of my day.  My day had begun several hours before of course.  Because Jackie has been so comfortable in the hospital, I have been able to go home and sleep for several hours.  Our home is about 45 minutes away (with no traffic) and it is worth the drive to get off those chairs.  Today I was back by 5:30, just in time to help her with her pre-op "bath" and they let me wash her hair with a nifty"shampoo cap".  I had never seen one and thought they would be just the thing for backpacking.  I really liked it because it was kept in the heater and gave my hands a chance to warm up.
The past two mornings I have made the early morning drive to the hospital by myself and have been intrigued both mornings by the things I have listened to. (Note:  Mark didn't come this morning because agreed it would be best to have a parent home to get the other children to school.  He is with me now.)  Anyway, as I drove yesterday I listened to "The Mormon Channel" which is an internet radio station.  It was broadcasting the last 15 minutes of an hour long interview with Richard G. Scott;  he was being asked about the challenges that the world and individuals face at this time in history.  He focused his comments on ...some really good advice that I absolutely cannot recall.  I am not going to delete my last lines even though I am blank because the part that sticks out to me is to trust the Lord.  I just remember the word Trust leaping into my heart.  The intriguing thing was that when the interview ended, it went to commercial and then started right up again at the exact place that I had begun to listen 15 minutes before.  The other strange thing is that when I looked at my phone, it still said it was trying to load.  I was happy to listen again.  It ended again and went to commercial.  What a surprise when the same segment began to play again.  I parked the car as the interview ended.  My phone was still spooling withe message that it was trying to load.  The idea of "Trust" played through my mind all day yesterday, especially when I considered the "event" and decisions made in the operating room on Tuesday.  I just continue to feel so good about that.  On Tuesday there was such a "shock" that I didn't really recover until I had rested.
This morning at the top of the 5:00 hour there was a very short segment wherein some lady discussed a 16 year-old girl who is diagnosed with a terminal cancer involving her spinal cord.  The girl said she spent the first night (after getting the prognosis) praying and has been peaceful every since.  She says it doesn't matter if she lives or dies because she trusts that it is God's plan for her.  She hopes her situation will help at least one individual come to Christ and that is all that matters.  The idea of Trust came back to me, I saw it in the sunrise and I felt it envelop me while I ate my little bowl of steel-cut oats in the cafeteria and the sun came through the window. (I was sitting at the window with a view similar to that which I just included.)  Anyone who has lived in the Pacific Northwest knows the power of sunshine in March and I found myself sitting there longer than intended just to capture the moment.  I realized Jackie had been gone for over an hour and my morning was completely calm.  I wasn't having to fight back images of the OR or distract myself at all.  What a beautiful morning.
I am writing because I want to, but I  know for the moment I have readers who want me to stop rambling and give some updates... They took Jackie to surgery at 7:15 and the incision was made at 8:26.  They are hoping to be done around 2:30.  I was glad to see there was such a short amount of time spent putting in the arterial line, etc.  The OR nurse called at 9:45 just to let me know that they were working away and everything was going well.

You Are My Sunshine

The sun is shining in the Pacific Northwest and we were actually able to enjoy it, just a bit!  Our nurse was only too happy to ask permission to unhook Jackie from her monitors and take us for a little walk through the hospital and out to a veranda.  It was so clear that we were able to see Mt. Hood, Mt. St. Helens, and just the tip of Mt. Adams.  All beautiful, snowcapped volcanoes.  What a fantastic place we live!
So - there really wasn't too much to unhook by this afternoon.  Her room is nice and quiet without the noise of the ventilator and suction.  They removed her arterial line this morning.  It will need to go back into the femoral artery tomorrow.  Usually they don't have a problem placing an arterial line, but we counted 18 puncture marks on her wrists this morning.  We asked the anesthesiologist when he visited today.  He said they were able to hit the arteries a couple times, but then couldn't thread the tubing.  They even had ultrasound come in for placement - here they saw that her anatomy is just a bit unusual.  Really?  What a shock?!  Anyway, with that out she could sit in a chair.

unhooked??!!

Her central line is unhooked, her two IVs are unhooked, the catheter was removed... so it was only the EKG and blood pressure cuff that needed to come off.  Walking through the busy hospital in a gown with yesterday's braid and tubes sticking out of your neck may not be that appealing to most 17 year old girls.. but this girl was all over it!  Our ICU room is one of the only ones without a window - really like a cave (especially with the overactive air conditioner).  We went on a second walk this afternoon and almost pushed people off the elevator in our eagerness for fresh air. Ahh, I love the great outdoors (you take what you can get)!

hugs and kisses

We have had some visitors who have truly brightened our day and contributed generously to our snack supply, with plenty of chocolate... exactly what two ladies living in a cave need to survive!  We have had our other children entertained, transported, and even tutored.  Our freezer is stocked up with meals for the coming week.  The prayers of countless friends... and friends of friends... have blessed our lives with contentment.  We are quite at peace and we have not had a worry for tomorrow.  Jackie continues to be in good spirits; she is courageous and calm. I am happy today because I wore a sweatshirt and brought a blanket to combat the cold.  Mark is happy because he had a quiet house to himself and was able to take advantage and catch up on work.  We are excited for him to bring the kids tonight for a visit.

Yesterday's episode has only confirmed to us that we are in the Lord's care.  All support and encouragemenbt confirms the same.

Questioning Fingers

It is just after 9:00 - what a day.  Still not sure what the night will bring.  They have been trying to determine when they are going to be able to take out her breathing tube.
They decreased her sedation about an hour ago to see if she was able to breathe on her own.  She can. No more Darth Vader which is what her breathing machine sounded like to me.  Everything looks good but they are still concerned that there may be too much swelling in her throat which means it might close up if the tube is gone.
Without sedation she is starting to communicate with us.  She has noticed that her face is covered with tape. Her arms have restraints on them which she just discovered and isn't too thrilled about.  She is able, however, to spell in the air with her fingers and ask us questions about what is going on... like the tape.  She just wiggled her fingers to let us know she had a few more questions - she wondered if she had her surgery done.  We have told her several times that they didn't, but she has forgotten.  She answers us with her eyes, and at this news she was quite expressive.  What a bummer to have to gear up for it again.
The ICU is certainly not the Marriott.  For Jackie her bed is straight and angled so that her head is up.  She cannot bend at the waist because they had to give her a femoral arterial line - I guess the wrists didn't work out too well.  For Mark and I there are two hard little chairs to sit on.  If they take the tube out one of us will stay with her tonight.  A few nights in these chairs will be exciting - there is a waiting room down the hall with padded chairs.  If the tube stayed in we were both going to go home, but she is not in any shape to be alone for awhile.
A doctor just came in and said he had put in the orders to get the tube out - what a relief.
As one of the anesthesiologists came to visit us in ICU he explained a little more clearly what the difficulty had been.  He said, "It is as though the Lord said to stop and not go any farther.  Like the writing was on the wall."
He said that he had another assignment for Thursday so he would not be in her surgery, but he wanted to be able to come and visit her.  He said they had all been touched by her; her story and her situation.  So are we.   ...and the tube just came out...

A Heart Stopping Moment

Mark and I just experienced a true heart stopping moment.  Jackie had been in surgery for a couple hours - at least she had left us a couple hours ago... we went walking outside (the sun is shining today!) and then got some lunch.  We went on another walk before finally going to sit in the family waiting area - they were all saying about 8 hours so we didn't want to be there too long... we had just settled in and were pulling out our books, etc. when we heard our name.  There was our surgeon asking the concierge for us - we knew that the anesthesia portion of the surgery would take quite awhile, so I naturally assumed he was just checking in with us to let us know they were underway.  We stepped out in the hallway to meet him the conference room and there were four other doctors - three surgeons and two anesthesiologists!  They all were looking very serious.
Stepping into that room and taking a chair, and having to look up and face them - wondering what in the world was going on and not wanting to wonder... and all those many thoughts that race through your mind even though it seems to be working in slow motion...  Anyway, they were all quick to assure us that Jackie is fine.  Hmmm - how often do five doctors leave an operating room to let the family know their daughter is fine?
I am not sure that we  understand exactly what happened - but first let me explain as best I can why the anesthesia portion was taking so long in the first place... Her left lung needs to be collapsed in order to have room in the chest cavity to access the tumor.  This is a pretty big deal - So they started her arterial line in order to monitor blood gases and other IVs - I don't know how many.  They said her intubation went smoothly, but since she would be using only one lung they had to also use a tube that branches and goes down into her bronchial tubes.
I am not explaining this well - but my mind is still in a whirl...
Apparently her body didn't handle the stress of this well.  Her O2 sats dropped suddenly and though they said they only dropped to about 60, there was some recovery time.  This team of doctors had certainly undergone a deal of stress - you could read it in the faces and manners.  So we are not exactly sure of all
 that happened - the short story is that none of them are comfortable proceeding at this time.  They needed to ask our permission to stop for now and begin fresh on Thursday.  Jackie will be in the ICU until that time.
She will be fine - but they can monitor her and her body will have a chance to gain some strength before they proceed.
As Mark and I sat down again in the waiting room,  he looked at me and said, "This is why we have all been praying that the doctors would know what to do."  It is so true!  After such a long delay today it would have been easier for them to continue and just get it done, but Jackie is at higher risk.

Natalie & Jackie - Simpler Times

We told them they had our full support and that this surgery is very big deal to us.  They assured us this is a big deal of a surgery to them also and with all of the natural risks they didn't feel that they should try to proceed.  Two of them assured us afterward that they would definitely wait if it was their own family member also.
I am feeling rather shaky - that was rather shocking.  I am anxious to see Jackie.  They are not sure when they will be removing the breathing tube, but they said they would be bringing her up carefully so that she will not feel a panic.  I hope that she doesn't!  Mark and I have had enough of a panic to last for awhile.

No Germ Could Survive

Well no germ would survive here in the  6th floor pre-op waiting area.  It is so cold!  We have been sitting here for six hours. The rest of the morning crowd left hours ago and we are as far from the nurse's station as we can be, so we just hunkered down and made ourselves comfortable. Mark and I finally took turns going to eat breakfast. Luckily my friend, Dawn, had posted a video from a comedienne on Facebook.  Jeanne Robertson kept us entertained with her clean comedy for over an hour. I am sure all of that laughing has been therapeutic.  If only they turned up the heat, we may never want to leave.

Blogs and Burdens

I have never been very anxious to blog - people have encouraged me many times and I just think, "No Way!"   I have kept journals off-and-on since I was twelve and I like the privacy, but I don't really like the pattern I set of writing before bed because too often, I am too tired and much is lost.

In reality, I have many thoughts swirling through my head, and I always want to write them down.  I always plan to write them down.  Occasionally I do write them down, but then I cannot find them.  This came to my notice at some time last year when I was talking with friends about people who don't wave back when driving.  My friend, Jack, said that they always chuckle when they pass me because I am one of those people!?!  I had no idea.  Actually I had no memory of ever passing them, hmmm - so what was I up to?  He said I look deep in thought... and that's it!  I started to pay attention to myself, and driving children around seems to be my most quiet time of day when I have so many thoughts in my head that I don't wave to my friends.

I have written only a small handful of posts, but what a relief to get these ideas and images out of my head and into print... I haven't thought of them since.  I have one last cancer thought that keeps nagging at me...

Bossier Than Cancer

I was recently reading in the scriptures about the Lord's ability to make our burdens light.  It hit me that he does not always remove the burden - it is still there.  However, he makes it so that we can handle it.  The first time Mark and I went to the City of Hope in LA to discuss Li-Fraumeni syndrome they were so surprised that we had six children and none had been diagnosed with cancer (8-9 years ago).  I was horrified that it could be that much of a reality in our future; and I just knew it was something I would not be able to handle.  Now here I am handling it - with a great deal of happiness and hope.  Obviously the Lord is guiding us through all of this.  The thing I found interesting as I read this time is the idea that the burden is not removed.  We do have to go through it - and carrying it will strengthen us.  I do feel the effects on my body as I am very tired and physically weak.  Our home life is certainly disrupted.

Immediately following Greg's treatments I wrote this:
We worked hard to have positive attitudes and allow our Faith to bring us peace.  However, though our spirits were at peace, our bodies were still subject to a high level of stress.  I spent a month or more with a neck to ankle rash and then both parents began to gain weight.  Even with regular exercise and watching what we ate it just kept coming.  Luckily we recognized that we were doing what we could and would wait until later to deal with it because we continually felt that we couldn't take on any extra "project".

Ugh, I also remember that my fingernails began splitting in all directions.  That took about a year to go away.
I certainly believe that one reason we are given divine help is so that we will witness of it to others, and I do join my personal witness to that of countless thousands that suffer -  the Lord can preserve us in our trials - it is all like that "Footprints" poem.  I know that cancer is a big deal, but I often feel humbled that we are blessed to have a trial that we can talk about openly and receive so much support from friends.  I am very aware that many other families have trials with their children that are not so easily discussed or "fixed" with surgery.  I am writing my experiences and feelings in a more public forum with the anticipation that it may touch someone who is struggling; and provide hope that there is a possibility for peace in the midst of affliction!

The Rest of the Story

More and more people have asked us how we found Jackie's tumor.  I have told so many people so many parts of the story.... Let's see if I can put it all in one spot so that I can remember.

It was the day after Christmas and I received a phone call from the oncologist at The Huntsman Cancer Institute.  He was calling me from his family vacation in Florida - on his wife's cell phone because he didn't want to wait for his to charge.  Hmmm, this cannot be good.  At the end of our call he asked what time it was in Washington.  It was 4:30 p.m.  "Good," he said, "You have time to call your surgeon out there and get her in for a biopsy."  

Backing up.. last fall three more of my children were diagnosed with Li Fraumeni Syndrome.  I will explain that another time, but it essentially means that they are much less equipped to fight cancerous cells than the rest of the population.  The Huntsman Cancer Institute has a great genetics program, and a team that focuses specifically on Li Fraumeni Syndrome.  We learned about this because Mark recently changed oncologists and ended up with a doctor whose wife and children also have Li Fraumeni Syndrome... what are the chances??  It is quite rare.  He encouraged us to get involved at Huntsman and on November 11 we took these three kids for genetic counseling and MRI screenings. They called us a few days later to let us know that there were a few concerns with both girls, but David was clear for now.  

Several weeks went by and we were busy with Thanksgiving, etc. so I didn't realize that we hadn't received our hardcopy reports.  I called in December and they were surprised to find out it had been set aside and not picked back up.  When they were preparing to send it, they found the report on this spinal mass that they had not seen before.  They were anxious, I was anxious, but trying to get in to our specialist at OHSU is a process, and it took much longer than I thought it should.  Jackie is our fourth family member to be treated by this doctor, but the others have been referred by local doctors with firm diagnoses, so the waiting was something new.  

Anyway, when we were finally  in the system we needed a new and more specific MRI and a biopsy with dr. visits in between.  The biopsy results took three weeks.  Aside from being called the day after Christmas, all of the other delays had helped us to feel secure that this was no big deal.  I thought I would have to do some convincing for them to do the surgery as quickly as spring break at the end of March.  Even benign tumors should be removed from Li-Fraumeni patients, because it can all turn bad.  Not a fun surprise to get the call that it is a chordoma.  A surprise is the right word to use, however, because  these are very rare - estimated 300/year diagnosed.   Of those cases only 1/20 occurs in ages younger than 20. Jackie's tumor is also in a very unusual spot - they usually occur at either end of the spine, then in the lumbar region.  Hers is in the thoracic region - T6, T7, & T8 (I think).  It is fist-sized and is pushing against the aorta.  It was hard to me to imagine how they would reach it...but I am pretty sure I have already explained that in an earlier blog.  Now I try not to imagine it.

Less than 24 hours and we will be in the thick of it...