Remember When Summer Plans were Simple?

My heart is so heavy this morning as I ponder two texts that I received within minutes of each other.  Two dear friends of mine have family members with some very serious medical issues and I am feeling weak and helpless.  I know that prayer and faith sustain me - I worry that I am not strong enough at the moment to do all that I can to help sustain them.  Certainly I stopped everything to pray specifically for them to feel strength and peace, and to know what I can do.  I am not exactly at my strongest - my one little goal today was to work with the kids to clean the mudroom, and I knew that would be a good accomplishment... I look forward to times of strength when I have more to give.

I think it was a different Mom who
managed to put these things together!
I think that I would like her, someday
I will be her again!

I have been thinking about this lately - especially since my children have been asking, "Mom, when are you going to give us our summer plan?"
Yikes!  For many years I have had some sort of family plan for the summer - we set goals, fill out charts, earn prizes, etc...  This year my mind is blank.  Summer vacation began this week, so I pulled out our "school year plan" book that I made last fall.  We didn't do very well, so I was hoping that we could just change dates and use it for summer instead - the book I pulled out was Mark's.  His final "journal entry" said, "We got our results from Huntsman [Cancer Institute] today."

Wow - this looks great,
I had better get to work!!

That was mid-November and we have not even made an attempt to use our books since then.  I have neither looked at or even considered them.  This gave me insight into our lives - we haven't been doing as great as we think.  In November we learned about "something unusual in Natalie's brain", and a few things going on with Jackie that have still not addressed (liver, parotid gland).  We got through the holidays and it was the day after Christmas that the doctor called me from his vacation to say that they had somehow overlooked the large spinal tumor.  Sounds horrible, but I was thankful that we had gotten through the holidays without that worry hanging over us.
We simply cannot function well when our load gets heavy.  I am very aware that my load is nowhere near as heavy as others.  Within the last few weeks I have heard of two other young men who have had bone tumors similar to Greg's.  One lost his leg and the other lost his life.  I have heard of a friend's brother who had a chordoma like Jackie, and he passed away within the year.  My friend's daughter had a brain tumor a few months ago that will affect her for the rest of her life - and as I was preparing to leave the hospital I overheard a distraught mother on the phone saying, "I don't know what will happen... they say that it is a quarter the size of her brain."

I was intrigued to see that the
back of last summer's book
matches my blog background.
Life is a Journey!

I can only hope that all of these people have faith in their Savior and hope in his Atonement to give them the strength to which we all have access.
I write that I am feeling weak, and I write that I have strength - sometimes I feel that it is this strength (which is not my own) that gives me the ability to allow myself times of weakness.
Why have we been so blessed to have such positive outcomes so far?  I have believed it is to give my children experience to be strong and help others in their future.  I see that it also gives me empathy that I cannot gain any other way - I can be a more effective friend because of the things that I am learning now.  
One of life's best lessons - things can really seem bad - but we choose our response.  There is so much to be happy about, so much to be grateful for - and the sun will always rise.  Despite knowing that we can be happy - there are times of sorrow and discouragement - I figure these times are a blessing so that we recognize the difference when peace does come - and it takes time.

Sunday - Natalie wanted to go
to church - and we found out
her hair would cover her scar.

Obviously I really like Joshua 1:9 - Be strong and of a good courage - The Lord tells us what to do and then gives us a way to accomplish it.
I find myself writing the same things over and again - this is what is on my mind and they are important lessons... I will write it again, I am sure.

Public invited - Free!

 Natalie's update:  We came home last Thursday afternoon and she began sleeping.  She woke up Sunday morning and announced, "My brain is back!" and suddenly she was normal again.  We have to remind ourselves that she has activity limits and we need to be gentle with her - but she is functioning quite well.  Certainly she tires more easily, but it turns out the doctor was right, I would have been able to send her to school by today.  She is very excited to be attending a three-day youth conference.  There is a medical trailer that is available for her to rest as needed, and she needs to not engage is too much activity, but she is with her friends, learning, doing service projects and best of all - there will be a music festival on Saturday.  She was with the choir that performed several of the songs last fall and she has been incredibly excited about it ever since.  It has been upsetting to her when there have been friends who haven't had good attitudes - then when it looked like she might have to miss it... well, it was sad.  During the hospital stay last week, her one concern (after wanting to see her friends), was whether or not she would be able to participate (and it was looking like she wouldn't) - so this is a happy day!  Watching a performance with over 1,200 youth would brighten anyone's day!  In a society where so much is dark and negative - a perfect brightness of hope is much needed!
We saw our neurosurgeon yesterday.  He was pleased with her wound care. One more week until she can fully immerse her head in water - then six weeks of careful activity.  She can walk and hike now (non-strenuous) and then proceed to light jogging, etc.  No contact sports for three months which is when we will do our follow-up MRI.  Her tumor is called a DNET (Dysembryoplastic neuroepithelial tumor)
 It is benign - but it is usually associated with epilepsy/seizures.  Natalie has never had a seizure, so we are grateful to have it out before symptoms began.  Following her first surgery, the surgeon had told me that the "unusual" tissue he had removed appeared to resemble tissue associated with seizures - during her second surgery, when they removed the tumor, they also removed more of these unusual areas.  I am glad that they are out - perhaps this is why she needed to go twice?  It seems that after the tumor was removed that the pathologist said something about those areas being messed up due to the presence of the tumor (like scar tissue maybe).

I just remembered another "chordoma" story that I learned this spring.  Our neighbors said that their nephew had a chordoma just a few years ago - it had wrapped around his brainstem and was inoperable.  I think that he was 17.  Then... it was gone, completely.  They attribute it to a miracle and so do I.  There is no other explanation.  We go to different churches, but can we say that we are of different faiths?  I don't really believe so.  We pray to the same God and we are all his children.  My sweet niece, Camille,  is in Mexico preparing to serve as a missionary in Houston, TX.  Her most recent letter included this quote from Richard G. Scott regarding prayer, "You are His child! You can trustingly approach Him! He doesn´t care if your feelings are clumsily expressed, you´re His child! He wants to hear from you!¨

Puppies, Paint, Ping Pong & Pain Meds...and pretzels

Elaine Dalton is a marathon runner.  She tells of a time that she was training with her husband and they were running up a hill.  He was quite ahead of her and she knew she couldn't keep his pace, so she called out to him that she was going to go back down --he stopped, came back to her, and reminded her that she must never make decisions while she is going uphill.
Of course this is true because your judgement is impaired by the difficulty and exertion put forth.
As a family currently on an uphill course... here are a few decisions we have made lately...
Puppies:  Yes, there is a new puppy at our house.  We have been thinking of this for over a year, particularly the children.  We told them we would have to wait until summer because they needed to be home.... it just happens that we found a "good fit" on the same week that we had a couple of brain surgeries.  My sweet friend was here yesterday and just laughed because their family is also up to their eyeballs in serious medical situations - and yet they just got a puppy also.  "What are they thinking?" we both asked ourselves about the other family... together we determined that it is sometimes important to bring a little spark of joy/change to the home.  Something fresh to occupy our minds and our time (without dressing up and being in public).  Anyway, our little addition is named Shelby after Natalie's favorite PICU nurse.  (Should we tell her???)

... craving homemade pretzels

Paint:  I finally just went and bought a gallon of paint yesterday.  Natalie was stir crazy in the house and so I took her for a ride.  We went to a small paint store so that she could go inside and just like that I finally made a decision for my new family room wall color.  I have been looking at swatches for over a year and recently there have been smatterings of paint samples on different walls.  It is strange for me to take so long - I have a variety of colors all over my house and I can usually get the idea, find the paint and have it done in a short time... This has gone on and on - but something about having our minds emptied by being in the hospital must suddenly leave enough room for difficult decisions to be resolved.  Now I just need to find the energy to get it on the walls (or the charm to have Mark get it on the walls).
Ping Pong:  Another surprising decision.  Natalie has been sleeping up to 17 hours at night.  When she comes down she is more alert everyday, but we are still taking it easy.  Though we usually don't have to whisper anymore -  household noises such as crumpling paper, unloading the dishwasher, walking across the room... still bother her off and on.  Yesterday, after our excursion to the paint store, she determined that she wanted to play a game.  I found a quiet game for us to play which bored her after about thirty seconds.  She decided that she wanted to play ping pong... yeah, right.  That will be a nice, quiet thing to do.  Well, we did it - with that little ball ricocheting about the room - the noise didn't bother her at all and it was therapeutic for mom also.  While we were playing she said, "Mom, blog about this and call it puppies, ping pong and pain meds!"  She was excited to be up and about.  I threw in the part about paint.

... anxious to be
back to normal...

Pain Meds:  What about pain meds?  We are not seeing too many of those lately.  Natalie has taken only Tylenol for a couple days now, and only once in awhile.  They also had her on a tapering-off of steroids so she is done with those today.  I thought that we would have a little pain-med-emergency last night... Natalie and I were sitting on the couch together and it was time for family prayer.  I slipped off the couch and down onto my knees.  After prayer, I slipped back onto the couch, fully unaware that Natalie had laid down and her head was now on my seat!  Yes, small nightmare, I sat on my daughter-recovering-from-brain-surgery's head!  Luckily I was just sliding back onto the couch... but I don't think I have ever sat on anyone's head before... strange time to begin.  She hurt and I think I hurt worse... until she started giggling at the absurdity of it.  I still held her for a long time.
Tylenol has also been sufficient pain medicine for my Jackie.  She is recovering from her wisdom teeth extraction.  She took it easy on Friday but was up and alert at 5:00 a.m. on Saturday to go to an early morning temple trip followed by regional choir practice.  My kids are so strong!
Natalie has been hoping for a couple days to be able to go to church today.  We all think that there would be too much commotion for her, but she talked us into letting her go to her Young Women meeting.  She was awake for several hours last night - so I thought she might sleep through church.  The rest of the family left and there she was out of bed.  She said she didn't sleep in the night because her brain woke up and wanted to stay awake.   She played with Shelby and showered on her own.  We are seeing great progress - it may be tough to keep her calm for six weeks.
Natalie asked me how it feels to not be growing tumors all the time.  I told her that a mom grows them along with her kids (and husband)... this puts me ahead of all of them.  She wasn't convinced, but all moms would know what I am talking about!

Laughter, the Best Medicine

We are back to whispering, but for the past few hours we witnessed such a transformation.  I have been very encouraged.
Natalie was, of course, not pleased to be staying in the hospital another night.  She was also beginning to think of all of the things she would be missing in the next few weeks because she could not be around any noise - even the ride home in a car was daunting because "cars can be so noisy".  In her discouragement she began to wonder why no one had come to visit???  I assured her that, not only was it still a school day for everyone else, she had just had back-to-back brain surgery and that is not really an open invitation to drop by.
As she drifted off to sleep I emailed my friend, Nina, to let her know she was welcome to come and bring Kandra (a good friend of Natalie's since birth who lives here in Oregon).  The hospital is between our two homes.  Natalie beamed when I told her, but worried because the girls like to laugh together and, just hours before, laughter had caused a great deal of pain.

She cannot see her scar in the
mirror so we had to take a photo.
She will be proud of this one!

Kandra came prepared to sit quietly beside Natalie and write notes back and forth.  Nina took me for a much-needed walk and when we returned... there sat Natalie and Kandra...laughing of course.  Apparently is was worth the pain that it was causing - the more it hurt the more funny it was.  We were quietly whispering on the parent bed/couch while the girls whispered and then...giggles and laughter.  As time went on and pain meds kicked in, the noise level rose to almost normal levels.  Our nurse was able to get Natalie out of bed without much trouble and said that she thought Natalie would be ready to go walk soon.  Natalie jumped at the chance and we all went walking - much farther than anticipated.  I was dumbfounded.  Her color was back and she was not at all the frail child I had been tiptoeing around all morning.  Night and day difference - Hooray!

We shall never know all the good that
a simple smile can do.  Mother Teresa

Eventually the pain meds wore off and she quieted down, but not like before.  I think she got a glimpse of recovery and has hope that things may return to normal again.  We are finally out of PICU and up on the neuro-surgical floor.  It is very quiet, we have a solid wood door, she can see out the window, her bed is more comfortable, vitals are only taken every 4 hours and... we have our own shower.  Our unit is 10 North - our old oncology unit was 10 South and this is just a mirror image. When the family came to visit everyone felt right at home. It took no time at all before the other children were in the family lounge making hot chocolate - an old favorite pasttime.  We shouldn't be so comfortable/familiar here... When we arrived at Doernbecher on Monday morning, Mark used some of the hospital hand sanitizer.  Natalie said that she liked the smell... it seems so "homey".  Hmmmm - well, way back when Mark and I realized what a long haul it would be as we fought Greg's cancer - we had determined that we would make it an adventure for the family... as positive as it could be.  I guess we were successful.  This is, however, an adventure I am not anxious to repeat too soon.
Tonight - she ate a little dinner, a piece of cheesecake and some pizza brought from home. She dozed for awhile, then did three laps around the unit, back to bed and (even with company here) feel immediately asleep.  Poor girl is completely exhausted.  She hasn't budged for over an hour - I think she will sleep very well tonight... and surely she will be in her own bed tomorrow.

A QUIET Morning in PICU

It seems that staying an extra night in the hospital is more discouraging than undergoing an extra brain surgery.  Natalie is not at all pleased with the prospect of another night here, though we will be up on the floor rather than the PICU.  I think it will be better than she thinks - here they have to wake her up every hour through the night and there is a pole between her and the window so that her bed actually faces away from it.
She cannot go home because she has not yet been out of bed and is not eating well yet.  So far she has managed 7 Saltine crackers, 1.5 apple juice containers, half an oreo and a Reeses peanut butter cup.  I just ordered her a variety of soft food for breakfast.  None of it sounded good to her, but we shall see...
The pain in her head is seriously exacerbated by noise... any noise.  We all must whisper - and only for a very short time.  Natalie lays quite still.  She whispers very quietly and only if she must.  We keep her door shut, but the voices in the hall are also painful.  This morning a resident popped in to do a neuro check - she is the only one that has placed her hand on the side of Natalie's head and asked her to push against it... she hadn't thought through the fact that there is an incision/tenderness running down the side of her head.  About an hour later Natalie whispered to me, "That Asian lady hurt my head..(long pause)...but I am not mad at her."
The other thing that hurts is to smile - there hasn't been much risk of that, until this morning.  She has a darling nurse who cannot help but be funny.  The three of us were having a pretty good laugh at various aspects of hospital/nursing care today... all trying to whisper-laugh while poor Natalie tried to support the pain in the side of her head.  It was one of those fun times when you just keep laughing at the fact that you are all laughing.  I found it quite therapeutic and I think Natalie did also, though it was painful.  She has subsequently needed more pain meds than usual, but I think it was worth it.
Natalie has charmed her nurses with her politeness, particularly when groggy.  Natalie was barely talking when her night nurse came on shift - the same on as the night before.  She was doing the neuro check and asking a lot of questions because Natalie kept saying that David was Nathan (David is getting tall).   The nurse asked if Natalie remembered her - she said, "Yes, you are Shelby, you are my best friend."  She had labeled her as the best friend because Shelby had taken out several of her "lines" the night before.
The MRI last night confirmed that the second surgery was successful.  Preliminary pathology reports list the tumor as benign and we will have final reports next week (I think).  Hooray!

2011 - Bossier Than Cancer
(Missing Nathan in the Philippines)

A few hours have passed and Natalie has begun to eat - a pudding, a bowl of strawberries and a yogurt parfait.  They disconnected her IV to encourage her to drink.  The pain meds have kicked in and she is more pleasant - currently watching I Love Lucy.  We are still whispering.

Alone - But Not For Long -

Yesterday I had Jackie and Mark to keep me company during surgery.  We ate lunch together and then sat together in the waiting room on chairs that are only comfortable for about 45 minutes.  Today I am on my own - I discovered the PICU public shower rooms, ate lunch alone with my book and now have my own private room in which to wait.   It probably isn't quite right to feel so at home here - but it is essentially the same bed and the same view I had while Greg lived here.  The window etchings on the 10th floor deal with sea life and these all have to do with trees.  The oncology unit also has individual showers in each room.  Nice perk, but after Natalie's nausea last night, I am reminded how very much I pray that this tumor is benign.  Sitting with a child undergoing (suffering through) chemotherapy is hard.   

There is, however, something special about caring for my child in a hospital.  Much like getting up with a newborn baby night after night - it is not my number one choice of activities, but it is a special time.  I am so glad that I can be here with Natalie.  I am more aware of all of this because of the quilt that is here on the bed.  I am recently acquainted with an incredibly sweet woman.  She made this quilt and gave it to me in anticipation of Natalie's hospitalization.  She has been a mother-in-the-hospital much more often than I have and reached out to me during Jackie's surgery - particularly in regard to angels watching over us.  She knows what she is talking about - and on this quilt there are angels, with words such as Guard, Protect, Guide & Shelter.  Her card said that she wanted to make sure that I would never again be cold as I nurtured my children in the hospital.  (In reference to the cold and uncomfortable ICU stay with Jackie -- Doernbecher is much better for parents.)  I thought that was a beautiful sentiment and I am happy to report that as I slept last night, I was very aware of angels, seen and unseen, that are watching over our family.

I just had a nice surprise as Bob, a longtime family friend, dropped by our room.  His son had an appointment at Doernbecher today.  What a nice break to have some conversation - I was glad he came and we laughed and agreed that Natalie would be glad she missed him.  Good timing.

I have otherwise been alone with my thoughts --as I blogged this morning I was wondering why?  Not why like "why me?" or "why us?"  Just contemplating - I wonder what the significance of all of this will be.  It seems unusual - whose life will be touched?  

On Sunday I was trying to distract myself and write about some seemingly random high school events - a boy I didn't like saying words I didn't like; and a boy I liked saying words I liked - both had such a positive effect on my life to this day!  Neither of them know, but I do.  So how often do we interact with people, have a positive effect, and never know?  The events of today changed our plans, but also the plans of many others - there may be a ripple effect that we will never know.  

In March, Jackie's surgery was postponed after two hours in surgery by the emergency resuscitation event and the doctors'unanimous decision that they all needed to begin fresh in two days.  The doctors expressed gratitude  to us then (as well as at post-op visits) for our calm support of their decision.  Apparently this had happened before but the family had been very upset.  Maybe our calm response can help them deal with future situations... who knows?  I know how that event touched us deeply - but I think that there were ripples also. 

Ok - Dr. Selden just came in.  He said that they are closing the wound and all went great.  Definite tumor tissue and it has been looked at by their top pathologist who said it looks like a low grade tumor.  He said they are thinking it is just a ----- (I thought I caught the name but when I tried to look it up, it didn't exist).  That's ok, it is all so preliminary that I should not be reporting such details. They are still wondering about the unusual cortex that surrounds the tumor.  I asked about the part of the brain that that was removed yesterday - he said it would have come out anyway because it was on the path to the tumor, they simply didn't go deep enough.  He said it was unusual and even if the computer had been correct, he would have sent that tissue to pathology.  

Dr. Selden also reported that when they started the computer once again showed that the tumor should be gone - somehow her brain "sagged" and so the readings are off.  He was essentially on his own but since the latest MRI showed the "path" taken yesterday as well as the tumor, he was able to go right to it.  This has been an unusual and frustrating case for him. Yet somehow it has been important to more than one person involved --but how???  This is what I'm talking about...

 I wonder what we would all find out about our brains if someone went digging around in there?  For the past couple of years I have been thinking that if I could start my schooling/career again I would like to have focused on brain research (especially if I were born 20 years later).  However, what about all of those positive experiences that I had as a surgical nurse?  Those friends made in nursing school?  The effect that my career has had on my family and in other situations... So, I guess I would not want to change.  Even when I consider poor decisions that I have made - I usually don't want to change them because I am grateful for lessons learned from them --- this is what I am talking about ...

Life intrigues me.

Now I will put this away so that I can be ready for Natalie to return. She had a bad experience yesterday when I stepped out of PICU (no cell phones allowed) to call home and she couldn't reach the call light.  She has requested that I stay very near and accessible - good time to put away the computer.

Groundhog Day

"Has Natalie had anything to eat or drink this morning?"
One of the doctors popped his head in this morning to inquire after Natalie's nutritional intake.  She has not been able to keep any food down - with the exception of two crackers last night.  I informed him of her status and he said, "Ok, make sure she doesn't eat or drink anything and I will be back to talk to you."

As he left I realized what this might mean.... 

Here we go again!

It was confirmed when Dr. Selden came to greet me a few minutes afterward.  He asked about Natalie and then asked me to come with him to look at her MRI scans that we had done at midnight last night.  Sure enough, there is her tumor - turns out they had only skimmed the edges.  No wonder the area around it looked abnormal.  He had talked to us about this risk - but in the 14 years as Chief of Pediatric Neurosurgery this has never happened.  Apparently her brain shifted (I cannot recall the word that he used.)  He also told me about his hard hat and shovel that he has ready for a groundbreaking this week as our Doernbecher Hospital becomes the only facility north of Los Angeles and East of Ann Arbor, MI to have an interoperative MRI for pediatric neurosurgery.  Natalie's surgery was just too early to take advantage of that...
So she is headed back to surgery today.  We will either go in a couple hours as second case, or this afternoon as third...  the scheduled second case child has a fever so they may have to wait.  Through the night I worried about her nausea, but it has turned out to be a blessing - her body is ready for surgery.  Today will be easier and shorter - we are very fortunate that we are not coming back in a couple of weeks.  Today they need only pop open the stitches and the bone plug - no scar tissue has developed and they will be able to get right where they need to be.  Her anesthetic will be lighter and they should not have to use an arterial line today.  When Natalie heard the news about surgery she accepted it gracefully and managed a smile when she heard they could proceed without an arterial line - she was so pleased when it came out last night.
We will be back in PICU tonight, but with the light anesthetic they are still hopeful to send us home tomorrow.
How strange that both of my daughters have had to do back-to-back surgeries for such unusual reasons.
In the movie, Groundhog Day, the hero learns to take advantage of his time to learn new things and develop new talents... I wonder what I am supposed to be learning and developing during my extra time?

Yesterday they marked the surgical site

I don't think they can miss it today!

Awake and Responding to Commands...

It is 3:20 - Natalie is still in surgery - they called us about an hour ago and told us to expect another hour.  I have been well distracted by remembering that Jackie needs to register for classes tomorrow.  When Nathan was a freshman we forgot to register and he ended up with classes like Ancient Greek - yikes.  It took us quite awhile to log in because we couldn't remember her password and didn't want to change it - our home computers have it "memorized" - I know how to help navigate the BYU website but we are still figuring out the BYUI registration process....
I forgot to mention earlier that Dr. Selden felt that her tumor had "plumped up" a bit.  The radiologist, however, felt that the measurements were the same as last time.  We are all hoping that the radiologist is correct.  Dr. Selden said he was secretly hoping that it would show shrinkage and therefore not even be a tumor - that didn't happen.
I am now going to go back to helping Jackie with her class schedule - suddenly writing about Natalie is bringing O.R. images that I would rather not have...

4:10 - still in surgery.  The color code chart has changed from green to yellow which means that they are "nearing completion"
I am thinking that all four children will be missing tonight's piano recital.  Mark thought he and Jackie would be on their way home by now.  The other children took their piano books and nice clothes to their friends' house in preparation.  I am afraid that we have not done well in our piano practice lately, so their teacher may just be as relieved as the children!
Let's see... this morning they asked Natalie to fill out a questionnaire for her chart so that her caregivers to know her better.  Here are a few of the questions with her answers:
I am comforted by:   Positive attitudes!
Things I like to talk about:  Anything to makes me smile
When I am anxious or upset, this is what helps:  You NOT being anxious or upset
When I am hurting, this is what I do or words I say: ...ouch...it hurts??
The most important thing to me (or my family) today is:  me not dying
That about wraps it all up...
...It is 4:24...
4:30 - Dr. Selden just came.  Natalie is waking up and responding to commands.  He said that what he was seeing through microscope corresponded with the computer readings so he is confident that they got it all.  He definitely saw tissue that was abnormal compared to the surrounding cortex.  He also took some of the cortex that he felt was not quite normal.  The frozen section didn't tell them much, he hadn't expected it to.  He said that if the lab doesn't have conclusive findings he will have it sent to San Francisco, or wherever he feels that there is a Li Fraumeni specialist that can look at it more closely. If she is eating well she will be able to go home tomorrow.  We are just waiting for a chance to be called to recovery to see her...