Monday, September 27, 2010

The Verdict is In...Sort of

I received an email from Dr. S this afternoon. She had the results of the genetic testing for SDS.  All three kids tested negative for the gene and mutations they have found thus far. So, what does this mean?  Well, as she put it, "This does not mean they do not have SDS.  At least one of your children presents with all the signs and symptoms of SDS to make a clinical diagnosis."  She explained when we were there in August that so many children who have all the symptoms never test positive for the gene.  Genetics on this disease is so brand new and they have less than 10 mutations so there is still plenty of genetic work to be done.  Cystic Fibrosis, the 'sister' disease if you will to SDS has over 1000 mutations that have been discovered over years of study and research. 

She would like us to return to Seattle for additional testing on the mitochondria  DNA sequence and 10 color flow cytometry as well as bone marrow biopsies.  Of course we will go.  I don't want to go but she feels like we need to rule out other bone marrow failure diseases and get a handle on things.  I asked if we could do the same testing here with our Oncologist under her direction but she said these tests are very difficult and specialized so Seattle would be better equipped to handle the situation.  Oh...big sigh.

This is a mixed bag.  I'm sure there are many who think I should be relieved but really these results mean nothing. She still believes they have some mutated form of SDS plus another disease that has been undiagnosed.  Now, we are hunting mitochondrial disease.  Just when you think things can't get any worse...it's no better than having SDS.  There is a growing group of children with SDS symptoms, negative SBDS gene and Mitochondrial disease as a secondary diagnosis, meaning, they are really sick kids!! I don't want this to be us! There is no treatment for mitochondrial disease.  The mitochondria is like scaffolding in each cell that converts protein to energy.  In mitochondrial disease, the scaffolding begins collapsing and nothing can be done to stop it.  It can cause neurological problems, bone marrow failure, chronic fatigue, and GI problems.  Really, it can affect every part of your body.

I just have to get the approval of the 'wasband' to move forward with this testing and we'll be off.  That could prove to be the hardest part of it all...sigh.  Well, it's going to take me a few days to digest this all, let it settle and prepare for a longer hospital stay than I wanted, in a city I am not familiar with.  I don't know yet what will be involved in tests but I know the gold standard for diagnosing mito disease is to take out a portion of the muscle from the leg or arm.  I have been told it is extremely painful and recovery is long. 

In the meantime, I have to focus on my kids.  Everyday, they ask if I have heard from Dr. S.  I couldn't lie.  The boys seem okay but Shelbie is really discouraged.  She cried and cried because she just wants someone to figure out what's wrong.  She wants a name, a plan, a cure.  We all want that.  I want that but that isn't what we are going to get.  Not yet at least. 

Friday, September 24, 2010

Waiting for news...

It's been 6 weeks since we went to Seattle.  6 weeks is how long the doctor said it would take for genetics to come back.  Once genetics are back, then we start all the specialist visits but most importantly bone marrow biopsies.  I can't wait for those to be scheduled and get the results back as well as the HLA typing on a bone marrow donor for all three kids.  The waiting kills me.  I feel like my whole life is in a stall wondering what will happen over the next few weeks.  I know what you're thinking,  "Why does it matter, get on with life."  It's hard to explain so I won't.  It just doesn't work that way. 

Oh, Spencer did see the surgeon this week for his follow up and he is doing well.  The biopsies came back normal!!!Yay!!  The pathology on the gallbladder showed that it was diseased so the test was accurate and taking it out was the right thing to do! Yay!! Spencer is doing much better although really tired still and has to take anti nausea meds still but he has gained one pound which I am very pleased about. 

For this post, I thought I might explain the pictures on the header of my blog.  Mostly, they are of the kids and our many hospital visits through the years.  All of them but the top left picture were taken in Boise at St. Lukes Hospital.  My favorite hospital of all time, rated number 1 according to me.  The best food, the best nurses, the best doctors the best atmosphere and most comfortable sleeping arrangements for moms!

The first picture on the bottom left is of the boys waiting for their turn to get IV's started.  Sam, even when he was little was always happy and cheerful and watched intently as they poked him for blood draws or IV's. The nurses were always surprised.  Spencer was usually a tough poke so it was a little more traumatic for him.  The second picture on the bottom is Shelbie getting her bone marrow biopsy from an oncology nurse practitioner.  I never did know why she did all the biopsies instead of our doctor but we loved her and she was really good with the kids.  I liked the fact that the group in Boise knocks the kids out and let us stay to watch and be with them.  I don't like watching them be taken into the OR suite like we have to do now.  The third picture is of our favorite doc, Dr. Nichols.  He was actually head of pediatric cardiology and oversaw the PICU where the kids had their bone marrow biopsies done.  He was the kind of guy with a really dry bedside manner, a little cranky and crotchety.  Our first visit, we were all scared of him until we realized it was all a front.  We discovered he loved Krispy Kreme donuts and Cheetos.    The next time we went, he was there supervising and we brought him a dozen donuts and a huge bag of Cheetos...that's the way to a doctors heart!  He became so tender and loving with the kids each time we were there.  I always take lots of fun things to keep the kids occupied while waiting for surgery and one visit I took dollar store crowns and wands and all sorts of goofy stuff and Dr. Nichols had no problem walking around all day dressed like a fairy.  We found out he was into practical jokes.  One visit, he place a remote controlled farting machine just under the kids blankets and when they started waking up from sedation, he would make all these farting machines go off.  The kids freaked out because they each thought it was them being rude!  It was pretty funny.  He made each bone marrow biopsy emotionally manageable.  We also saw him when Shelbie spent an extended amount of time in the hospital and Spencer too.  He is now retired and we do biopsies here so our paths will not cross again.

The top picture on the left was last year at Madison.  I was glad they could keep the kids together in one room.  It made taking care of them a lot easier for me and the nurses.  It was a good experience and hopefully the upcoming one will go as smoothly.

Wednesday, September 22, 2010

Don't Let Me Forget....Part 2

(If you are going to read this through in one sitting, grab a snack...it's long...I'm just sayin....)
Thoughts have been teeming through my head today I could hardly wait to get them all down on paper and begin to parse through them all and form one cohesive message.  Sometimes, for me at least, this is how the Holy Ghost works.  A message in anagram form that I am then forced to work through.  I guess that's all part of the whole search, ponder and pray formula.  Someday, maybe in the near future, months or years from now, I am going to have to remember how I felt this morning.  I will need to find my way back to that moment when connections were made, and clarity reigned in my mind.  Sadly, it is only 16 hours later and already I have almost forgotten what it felt like.  The peace, the stillness, the aha...I get it moment as I sat in the temple. 

I arrived early for the session, 45 minutes early.  A couple of workers asked if I would like to do some other work before the session began.  I kind of hummed and hawed, she said she would see if they needed help then come back to let me know.  Sure enough, they had no one there and doing a few names would have helped them out.  Well, to my surprise, mostly because it felt like a selfish thing to do, I said, "no, I would rather not this morning. I will just sit in the chapel and wait."

I was looking forward to the time I could spend in silence from the stressors of my daily, grinding life.  I relished in the thoughts of 45 min. to do nothing, be nothing, say nothing, think nothing, feel nothing...well maybe the spirit and be alone! (I know, I hate being alone)  I sat down on the bench and immediately felt a steady exhale escaping, a long sigh and I felt lighter.  Simple, distinct thoughts began to settle around the frayed edges of my mind securing their raveled ends.  Thoughts I had never planned on stealing me away. 

I heard the voices of many people, many loving people with good intentions say things like "Why are you so upset?"  "What surprises you about this news, you know your kids are sick?" "Well, this is nothing new for you, this is your life everyday, you'll be fine."  I remembered how sad it made me feel to hear those comments.  I remembered that just 3 weeks ago, I was beside myself in despair, fear, a tsunami of desolation and hopelessness that rendered me broken into a pool of tears most days.  As I sat there, I was ashamed of feeling so scared.  Where was my faith?  I have faith, I have strong faith that has been tested for 41 years.  I was born with trials and tribulations so no, this is not new to me but it is.  I prayed for forgiveness for not being strong and trusting more in God and then came these feelings I don't ever want to forget but I know I will...

Everything in my life has lead me to the trials I face today. I could clearly see each and every trial starting with my birth.  I was born with a congenital hip defect, doctors questioned if I would ever walk. I could see, each trial with a purpose, its meaning. I saw what I had learned from each one and how it equipped me to handle the next one.  God has brought me from one trial to the next in His loving, caring way, each one getting a little harder, demanding a few more tears,  requiring a little more hope, compelling a fragment more of faith and a substantial amount of time 'wrestling' with the spirit on my knees in prayer.  The Spirit was gentle as it reminded me that each trial is new, a place I've never been before.  It's okay to find it hard, it's suppose to be hard, it's going to be hard. It's okay to feel sadness and fear.  Remember? Line upon line...trials work that way too.  I felt forgiven.  I felt understood and even validated in the moments I didn't handle with graceful faith. I can't keep worrying about what other people think of me or my life. 

Then the part I hate but is just as important as the rest.  I felt an overwhelming presence of peace.  A knowing entered my whole being that I need to work hard over the next few days, weeks to prepare spiritually for what lies ahead.  Though I have only an idea of what that is going to be, I know this is the time for me to prepare myself and my kids for the next big trial. If there is one thing I have learned, never underestimate the trials God can give you.  Hearts will be stretched to the point of breaking, emotions will rift in overwhelm but God will be there, somewhere in the details of it all with a plan that I have to accept and the sooner I learn to want His will for me, the sooner I will find joy in the journey of whatever trial comes next.  I guess this is another tender mercy of the Lord.  There was no doubt that today I caught a glimpse of His eternal plan and he is setting things up for something great to learn.  I'm pretty sure I won't be too happy about it but whatever good it is for, it will be good for me.  I may want to utter the words, "Why do you hate me?"  but then I will remember this day, these moments and how important it will be to give up, give up the fear and keep the faith.

Tuesday, September 21, 2010

Don't Let Me Forget...Part 1

Sunday I listened to a fabulous talk by Elder Webb, a general authority in town to call a new Stake Presidency for our Stake.  I will be paraphrasing his talk of course and hopefully, I can do his thoughts justice.  This is part 1 of where this week is taking me in the world of chronic illness. By the end of the part 2, I hope my feelings have gelled with a little more clarity. 

       I don't ever want to forget this story....  He relates his experience as a Mission President in Venezuela some time ago.  In that country, the government dictates what job a person can get and is based on the amount of education a person has.  Many people are not well educated and are not able to get decent jobs because of this law.  Elder Webb had a missionary who was from Venezuela.  He was very bright and sharp but only had a junior high education.  This meant that the only job he would be able to get after his mission was digging ditches, with a shovel.  The thought of this broke Elder Webb's heart.  He prayed about how he could help this missionary so that when he returned home, he would be able to have a good job.  He discovered that there was a clause built into the law which stated that anyone who could speak a foreign language would qualify for a job in the travel and tourism industry.  Elder Webb decided to transfer this missionary, who only had 3 months left in his mission, to an english speaking branch in the mission.  He called the three other missionaries this young man would be serving with and forbade them to speak anything but english to this missionary.  Of course the missionary was discouraged and despaired.  He called Elder Webb to complain and Elder Webb would only speak english to this missionary.  It was the only way he knew of to teach this missionary english so he would be able to be gainfully employed after his mission.  The poor Venezuelian missionary was so upset with his new calling.  He called Elder Webb again and through tears said, "Why do you hate me President Webb?"
President Webb replied, also with tears in his eyes, "I don't hate you!" 
The young missionary couldn't understand that this transfer would be a blessing in his life. It would allow him to learn english so that his standard of living could be better.  It was all for his good but he could not see it at the time.  "How often" Elder Webb asked, "do we go to our Heavenly Father in the midst of a trial and say, 'Why do you hate me?" 
        I have never gone to the Lord and asked why he hated me or even asked "Why ME?"  I already know the answer to those questions but this story put it all in perspective for me.  A great reminder that there is a plan, a method to this maddness, a reason for all the rhymes of life. 

Sunday, September 19, 2010

Running

I woke up Saturday morning with the chills, a throbbing in my head and congestion that made my teeth ache.  I would have stayed in bed but my back felt like it had carried an elephant through the night.  I dragged myself over to the clubhouse thinking I could run from this virus, stay a few steps ahead of it.  Lately, it seems all I've been is sick.  I stopped exercising back in April when I had surgery.  I got sick that same week and have never been the same.  I think exercising keeps the stress to a manageable level and well, there is a lot to be stressed about these days.  Even though, I feel like I do okay each day, obviously, it is taking it's toll on my health so last Monday, I decided to get back to my daily routine of cardio and weights.  If I skipped now, before establishing this habit again, I would be defeated and I was not about to let that happen. 

I probably expended more energy complaining about my exercises yesterday than any other effort I made.  Each step was painful, my lungs could hardly expand and my nose was running faster than I was.
"Why on earth am I doing this?" Was the question that rolled through my mind like a wall street ticker tape.
Well, for one thing, my arthritis is petrifying me 1" of a joint at a time.  It progresses when I am sitting, standing or sleeping and that is all I've been doing lately, well , not sleeping but sitting and standing.  Second of all, it helps me stay caught up with my mind which would run amok if I let it. 

I am in limbo.  That undesirable place when you become uncomfortably flexible while waiting for the 'party' to begin.  There have been some false starts and over zealous plans, inklings of something big taking off but no, I'm still in limbo.  Looking for work, making plans and waiting for news on the kids.  I don't like the absence of concrete things.  Even bad things that are concrete are better than waiting and wondering what lurks behind each corner. 

It has been 5 weeks since the genetic tests were done on the kids.  It seems everything is hinging on the return of those tests.  We can't start GI work ups, immunology, pulmonology,endocrinology, oncology or any other ology until we have genetics.  The kids need their bone marrow biopsies done and I like to do those during spud harvest so they aren't missing school but again, we have to wait which means our window for scheduling that is getting smaller and smaller.  I am growing more and more impatient feeling like I can't even plan anything in my life until we know what we are dealing with and what doctors will need to be scheduled sooner than later. It's a crazy place to be. 

I feel like I have ADD.  I can't hardly sit still or concentrate on anything.  I sit down to do a task and within minutes, I am looking for another distraction.  I watch the clock and wait for the mailman to come. Even when I am cleaning, I don't stick to my usual pattern, I jump around and am really not very effective.  So, I need to continue to run everyday.  Hopefully, in doing so, I will get my health back, both physically and mentally.

Tuesday, September 14, 2010

Better Day

Today is definitely a better day for Spencer.  The anti nausea medicine has helped him to start eating solids and keep them down.  He is off pain meds as well though he still takes ibuprofen to keep the dull ache to just that, dull.  He has a long way to go to get his weight back on.  I am really glad to see glimpses of my 'old' Spencer coming back.  I hope he doesn't have to rely on the anti nausea meds for too long but if so, we will deal.  Now comes the hard part, getting him caught up on three weeks of homework!

Sunday, September 12, 2010

You Can't Play God!

You've heard it said that this is not a dress rehearsal, it's LIFE.  We all have a part to play, a part reserved just for us.  I can not play the part of God and neither can you! A no brainer right?  Then why, I wonder do I keep trying to take over HIS part?

I am probably the most guilty of this.  Well, actually, I try really hard to be patient and I have been learning through the years that I can not steer the river, cookies crumble, chips will fall where they may and spilled milk should not render me sunk in a pool of my own tears.  I try to see a half full glass of whatever drink is in front of me.  Maybe I am just kidding myself but I think I really do try.  Some days though, are harder than others to just GIVE UP! I mean, just give up trying to make everything okay, ya know? The old adage, let go and let God?  I really need to make a bigger effort in just giving up this coming week.  I allowed a few things the past few days get me wound around the axel and I need to let it go.  I was at the school this week and ran into one of our docs.  He hasn't heard from us about Seattle and wondered how it went.  He was there with his family and I despise talking 'doc' with one of our doctors when they are on leisure time.  He kept pressing the issue so I just generally said that the Seattle doc found alot of problems and some brewing in the kids' bone marrow that had her concerned.  He nodded his head.  I said, "Have you been aware of these problems?"  He replied that yes he was aware.  "Then why didn't I know about the problems last year when they first cropped up?  It's nearly a year later and we have yet to address them?" 

"What would it have mattered?  Unless there is something we can do about it, what does it matter? There's no point in worrying about it until there is something to worry about." Easy for him to say.  Not easy for me to hear.  It felt like a sucker punch to the gut. I shrugged my shoulders in defeat but what I really wanted to say was, "You don't get to be God!  You don't get to decide what I will worry about and what I won't."  I need to function on a base of knowledge not a series of surprises!  Maybe he didn't know that an SDS child just passed away because his doctors were unprepared.  They weren't prepared when he developed full blown leukemia. Maybe they too were waiting for something to worry about.  They had no donors lined up, they had no protocal in place.  He waited and waited for the lengthy process of finding a donor until his body could wait no longer. 

I am not going to play this game like that...but then I remember that all I have to do is fulfill the role I was placed here to play.  I don't get to be God either.  I don't even get to be the doctors who look over my children. I have no say in what the outcome of anything will be.  I only get to give up.  Let God keep the orchestra tuned and on the same page.  An easy concept to understand, a super hard concept to live. 

So, this is where I am this week, trying to give up.  I'm telling you now, what a challenge I face.  Spencer is still sick.  He is as sick today as he was on Tuesday and Wednesday.  The improvements are miniscule and if i look really carefully, I may be able to magnify a couple of them but otherwise it's tough to see any change for good.  It's frustrating. It was suppose to be easier than this, 'a piece of cake' I think I heard people say.  Tomorrow he will have to be placed on the homebound list at school.  He 's only attended 2 days of school this year. I was confident he would be back to school tomorrow but that will not happen. 

In conclusion, my challenge phrase for this week comes from the hymn How Gentle God's Command.  "Why should this anxious load press down your weary mind?  Haste to your Heavenly Father's throne and sweet refreshment find."  I'm going to make it a great week...

Thursday, September 9, 2010

Just another picture to add to our 'here we go' collection as in Here We Go Again...more hospitals, more tests, more trials.

Gall Bladder Surgery

Well, through all my doubt and fear the great and dreadful day is over! He was in surgery for just over two hours, a lot longer than I was anticipating.  The surgery itself was successful and the biopsies were done as well.  We did discover by early afternoon that he is allergic to demoral!  That was not fun and created all sorts of problems.  So much so that he was transported to the hospital from the surgery center.  NOTE TO SELF....Day surgery is a joke!!! I will never opt for that again unless it's to get a wart removed! Whoever thought you could take out a body part then head home 6 hours later was smokin something!! I felt relieved when the decision was made to keep him in the hospital.  I sat there for 6 hours watching his heartrate drop into the high 30's mixed in with episodes of apnea.  His oxygen was really low as well, at times dipping into the 70's.  I had no idea how I would manage all this at home. 

So, I'm glad that the worst of the week is behind us.  I am even happier to report that his gall bladder really was diseased!  I know, it sounds crazy to say I am happy he had a problem.  It's just that the GI wasn't convinced and he gave some compelling reasons not to have it taken out.  Spencer's liver enzymes were normal and he didn't present like a typical patient with gall bladder problems.  In the end, it came down to what I felt was best.  It was a tough position to be in.  If we took out the gall bladder and discovered that it was fine, then we just created some possible problems for him and his already messed up GI system.  If we waited like the GI doc wanted, and it really was a bad gall bladder then we are compounding his problems and creating new ones.  Spencer will have some hurdles to cross over the next few weeks as we wait and see how his body will compensate without a gall bladder.  For most people, they have to eat a diet low in fat.  For Spencer and his poorly functioning pancreas, he needs to be on a high fat diet.  He has a hard time gaining weight because of his pancreatic malabsorption problems.  So, now what do we do?  As of Tuesday before surgery, he had lost 8 pounds.  I'm sure he will lose much more before he recovers fully.  Again, I am in the unappealing position of having to decide how to feed this kid as far as fat goes.  I have consulted a couple of docs and a dietician but no one seems to be able to know how to handle this.  The SDS community is saying stick to high fat....hopefully those mother instincts will kick in soon and I will 'know' what the right thing is. 

Today, he tried his first solid food since last week, a piece of toast.  He did fine with it and was really confused when he didn't feel sick while eating it.  He stopped in the middle of his feast.  I said, "What's wrong, are you sick, are you full, are you done?" 
"No, I'm just noticing that I don't feel sick.  The first time all year I think I can finish this."
I am so glad for him!  He is still struggling with pain.  Bleeding was a real issue for him after surgery.  Of course the only time we needed his platelets to be up in the normal range and they were the lowest they have ever been for him!  They weren't crazy low like Shelbie can get but did create some difficulties.  Dr. H commented that he bled a lot more than any other patient he has had. 

That's all to report on for this event!  I am very grateful to all those who prayed and offered support to us during this crazy week.   Prayers do make a difference.  I think I had mentioned in an earlier post that I was dreading this week of surgery but I actually wasn't nervous at all while he was in surgery.  I felt oddly calm, calmer than I have in over a month so I know I was being taken care of and blessed.

Monday, September 6, 2010

LIFE. Un-defined

I have a life...it's not always the best life but it is certainly full of variety.  It annoys me when people confuse me with someone who defines their life by the trials they 'keep', so to speak.  For instance, I have never understood how people with addictions define their life by their addiction.  An alcoholic will always introduce themself as an alcoholic or a recovering alcoholic even though they have been sober for 25 years! I don't get that. Why would you want to hang on to that ugly part of your life.  I realize it was once a big part of them and a bigger deal to overcome the addiction but how about an introduction like, "I have been a happy person for 25 years." or better yet, "My name is Fred."

So, what am I getting at....hmmmmm.  Well, lately, things have been really tough.  We have had a mountain of uncertainties pile upon us at once it seems and I've sometimes been lost in the distress of it all but I have never become my problems.  Even on our worst days, we find a way to smile, someone to serve and prayer of gratitude to offer.  Unfortunately, if someone calls or stops by in the middle of a moment, all they see is the broken down me and then I tend to get labeled.  In reality though, I am human.  I have not lost all hope nor is my faith dwindling.  It just happened to be one moment in many that was not my best. 

This is the main reason I decided to start this new blog.  To keep the medical messes separate from the regular comings and goings of life.  Yes, my kids have Shwachman Diamond Syndrome but they only have it, they are not IT.  I am a single mom but even that does not define who I am.  I would rather be un-defined.  A mystery.  A person who will surprise you with moments of strength to overcome the darkest storm, trying moments when tenderness triumphs and yes, even those unbecoming moments when laying in bed all day is the best option (though I have not experienced that yet)!

On the eve of Spencer's surgery, I thought I had had a pretty good day until I started breaking it down.  I quickly realized that I used one of my favorite coping mechanisms, go manic.  Do a million things to keep a frantic pace of busy-ness, forget to sleep the night before, forget to eat, forget to drink, forget that tomorrow will come and I will be sitting alone at the surgery center waiting for my son to come out of the anesthesia and surgery safely.  I can do hard things....

Friday, September 3, 2010

We have a plan

It's been a long day but after a lot of time spent with the surgeon, Spencer will have his gall bladder removed on Tuesday along with a scope and several biopsies.  I just pray we are doing the right thing.  Most anyone without a gall bladder does just fine but Spencer is not just anyone.  He is a boy with a complex set of other problems including malabsorption and a liver and pancreas that have been known to struggle at times.  I don't fully understand what the consequeces of this will be but I know this is only the beginning of a long road. I really need to find a way to increase my faith and trust in my decision without looking back, worrying about the what if's.  I asked Spencer as we left the office of the Surgeon what he was feeling.  He said in all the wisdom of an almost 16 year old, "Mom, this is the right thing to do.  Please don't worry, I'm not worried. It's going to be okay."  Inside I'm screaming while grinding my teeth to fine powder, "Ahhhhhh, I don't want to be the one to make all these hard decisions!" 

When I got home, I had a message waiting for me that a young boy with SDS passed away last night waiting for a bone marrow match.  So sad.  I wish this didn't feel so real and so heavy.  I even wish we had never gone to Seattle.  None of these emotions would be so close to the surface and whirling about with such confusion.  I would still be living in la la land, happy that everything was just FINE! 

The other weird thing is is that I feel like I am living totally separate lives.  I have this life full of fear and worry yet another life I lead that is so calm knowing full well that God has a plan and I will not frustrate that plan and all things will be as they should be in the moment they are.  At the same time these two lives are colliding, I have yet another that is still laughing and having fun with her kids as if there is nothing wrong.  Each of these parts has a different depth and dimension.  It is so strange to be me.

Thursday, September 2, 2010

I hate rollercoasters


I hate rollercoasters.  I really hate rollercoasters. Funny how the one thing in life I really hate is the one thing I am subjected to each and every day lately!  My life is a rollercoaster.  If it were to win an award, it would be for the highest climb, longest, sharpest drops, the most twists and turns in a short amount of time and the most precarious because on my ride, you hang from the very ends of your fingertips with no recognizable safety harness.  Sound fun? 

I spoke to the nurse at our doctor's office this morning and things are, were, all set up for Spencer.  I asked her to fax copies of the report to our GI in Boise so that he would be in the loop.  Later this morning, I received an email for the GI saying, "Don't take out his gall bladder. That is not the problem.  I will call your surgeon and talk to him."  Now what?   I guess we will find out tomorrow what the surgeon has to say.  I hate the fact that doctors can't agree on things such as this.  Our GI believes that the hida scan, the test done to see the effectiveness of the gall bladder is not a reliable test.  So, what is a reliable test?  There isn't another one, it is the gold standard!  I really feel lost. 

I also received today, notes from Dr. S on our visit to Seattle.  Notes for Spencer and Samuel.  Shelbie's are still pending.  Still no news on genetics, these were just her summaries of the visit and results from the blood work.  She noted that Spencer has abnormal neutrophils according to stains that she did herself.  She doesn't go into a lot of detail about those abnormalities but enough that I think I will be losing sleep until he has his bone marrow biopsy done. 

I sometimes question how I will remain calm over the next few months.  I'm sure people look at me and think I'm nuts.  I can go from calm to full blown panic mode in a matter of split seconds.  My kids are my life.  I love them with a fierce kind of love and when my attachments to them feel threatened, I get a little overwhelmed.  I often wonder if I would be this way if they were all normal. Probably not because I wouldn't have cause to ponder on such things.  Never before has life with Shwachmans been so hard.  Not only is the physical part hard but the emotional part is harder.  Feeling misunderstood is just the beginning.  I think I will explore this part a little more and post at a future date.  Until then, I pray all the powers that be can come to some reasonable conclusion about how to treat Spencer.  I hope that I recognize the spirit and know for myself what needs to happen.  Tomorrow will be a big day but I fear bigger days are not far off.  I can do hard things....I can do hard things....

Wednesday, September 1, 2010

The Rest of the Story

Well, our awesome docs called tonight but I actually saw one of our doctors who is actually in our ward and is my home teacher and gave me the news in person.  Spencer will need his gall bladder out.  It is not even functioning!  I am relieved that they have found the cause of his nausea but I feel bad that I let it go on so long just thinking it was an adjustment needed in his enzymes.  I think everyone of the doctors watching over Spencer was surprised by the news. 

     It's hard to say how Spencer feels about all this news.  He is really good at keeping it all inside.  I can tell he is bummed that he will be down for his birthday since the surgery will most likely take place the first part of next week.  At the same time though, waiting a week will still put him down for his birthday since he is so sick. 

     I am tired, really tired.  When I think about going through this next week it makes me feel like I just spent 8 hours at Chuck A Rama and am now boarding the worlds craziest rollercoaster!  I do not want to do this.  I do not want to feel my stomach flopping around like a dead fish while I wait for him to get out of surgery.  In about 6 weeks, we will be doing it all over again as all three kids will be having their bone marrow biopsies. 

     Again, I just feel stupid because I know this isn't brain surgery and I shouldn't even be bothered by it but everything that happens to a chronically ill child is magnified by a billion whether good or bad.  There are so many other questions now that will have to be answered.  For instance, what happens now when he already struggles to process fat?  Without a gall bladder, I can just imagine the complications that could arise.  This is where I need to focus on the moment and not go off on my future tangents.  sigh.....
 
     On a different sort of note...I have a good friend, she is 15 years old and was just diagnosed with Breast Cancer.  A very rare and aggressive form.  If you have a moment, maybe remember her in your thoughts and prayers.  Let's just call her Sage, Heavenly Father will know who she is.  She loved hanging out with us when she would come to town to visit her dad and step brother and step mom and always asked if I would 'adopt' her.  She even called me 'mom'.  I told her if she was going to be my daughter, she would have to change her name to an 'S' name.  Well she always wanted to be named Sage so that is what we call her.  Today she started radiation and chemotherapy.   It can always be worse......at least a gall bladder problem will be gone soon.

Today's Events


This was our morning at MM Hospital.  Spencer had to lay still like this for just over 2 hours.  They were injecting contrasts and dyes and then some horrible substance that made him feel really sick and get super hot.  He was able to watch as the contrast worked through his liver, gallbladder, and all the major ducts.  We won't know much until tomorrow probably, maybe even Friday. 

    There were two students attending this procedure and the radiologist was giving them a play by play of what she was doing and then discussed with them the amount of radiation Spencer would be receiving. She was going on about how important it was that they protected themselves from the radiation by staying behind the lead glass panel she had moved between Spencer and her desk.  She got out some radiation detector tucked in the top drawer and showed us all how radioactive Spencer was compared to other parts of the room.  When she set it beside him, the lights were flashing and a rapid alarm began blaring but behind the lead panel, the detector was quiet.  On and on she went but the funny thing was after making such a big deal about radiation and cancer, she brings in a chair and sets it beside Spencer for me to sit in!  "Hey, where's my lead glass panel?"  I had to laugh!  It was even funnier to see these students all trying to crowd in behind the panel.  One girl kept lining her back up with the edge of  the lead glass, trying really hard to make sure it didn't extend into the  'danger' zone!  I pretended to read my Nook as I laughed under my breath!