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Showing posts from October, 2010

Not my plan

As is customary, things are not going according to plan, at least my plan.  I did not want to go through the weekend without getting bmb results but here we are.  No news is, well, no news!  Maybe Monday or maybe I should just stop waiting for things to go according to my plans, what do I know?

I continue to stay busy and actually had a full Friday night and Saturday.  The kids and I have committed to be part of a great service project that the Sullenger's have co ordinated.  They are a young couple whose daughter drowned in a canal this past August.  She was only 2 years old.  This December 17th, she would have celebrated her 3 birthday.  In honor of her, they are planning a service project to put together 200 tote bags for the Primary Children's Medical Center PICU filled with essentials that parents may need if they have  arrived at the unit in an emergency situation.  Their daughter was life flighted and they had little time to prepare for the hospital stay.  These totes w…

Slowly going crazy

I want to be completely honest...because this blog is all about being honest, the cold, hard, desolate truth of living with chronic illness.  So, as I thought about what the update for today should be, the words of a song I often heard my sister sing, when she is trying to make light of a stressful,crazy situation, came to my mind.  She would always sing it with a smile on her face, trying not to lose her sense of humor in the moment.  Picture me singing this song, still trying to keep my humor intact!!
I am slowly goingcrazy
1,2,3,4,5,6 switch.....
Crazygoingslowly am I    
6,5,4,3,2,1, switch.....

Still no word from Seattle.  What will truly be hard is if we have to go another weekend not knowing!  Being patient stinks!!!

The Nature of God

This has been a challenging week and it's only Tuesday!  This is the week we expect to hear from the Doctor on the bone marrow biopsies.  We could get nothing but good news and that would be wonderful.  I have noticed that the past six months I have been slowly drowning in life, pain and suffering, at times surfacing in a chaotic dog paddle to regroup, gulp some air and begin another decent to the bottom.  All the while, trying to remember that God is in charge and he has a plan for my happiness and the happiness of my children. 

Last year, I became very involved in a book called A Course in Miracles.  I was captivated, mesmerized by what I learned in this very spiritual book though not a book belonging to any religion.  I spent every day, all day at work, plugged in to Itunes so I could listen to 34 podcasts that spoke in depth about the Course. Some I would listen to over and over.  I learned so much.  I was on a spiritual high for months.  I felt invincible.  I felt that no ch…

While we wait

I am so glad this week flew by.  I dread waiting for test results.  Even when the kids were absolutely stable and 'normal' for them, it was hard to wait.  This time is a bit different of course.  I have really tried to stay busy this week doing a little of everything and a lot of nothing.  I say that because I am seriously tired today but when I look at the week and what I have accomplished, I don't really have much to show for it. 

We should really hold a lottery for stuff like this, the odds of guessing what the outcome will be are about as unlikely as guessing the powerball winner!  When I am having a good day, I convince myself that all the abnormal, dysplastic cells will be gone and we will be back to normal, whatever that has become.  On the days when the kids are having a little more pain and new aches than normal, I am just sure that the marrow will show great declines and that is discouraging.  I wish I could just be neutral but I haven't figured out how to d…

Ha Right Plan!

HRP, the acronym which spells out the nuts and bolts of our health insurance plan.  The insurance company tells me that the letters H.R.P stands for High Risk Pool.  They tell me it means that they understand we have exceptionally astronomical healthcare needs and they will be there every step of the way to keep us insured, protected and healthy. 

If you ask me, however, H.R.P really stands for if we are going to PAY for that!  The real nuts and bolts of the plan are that we pay a small fortune each month and in return for this minor monetary sacrifice, receive in addition to a healthy $6000.00 deductible, a large amount of nothing! 

A couple of days ago, I found myself at the pharmacy with 7 refills.  It would be an understatement to say I left very frustrated, empty handed, because some oaf in the conference room of the insurance company decided to change their policy on the drugs we happen to use.  He probably got a sweet pay raise for this grand idea! They wouldn…

A good omen

This is what the kids refer to as the 'flower of hope'.  It just began growing in between the concrete joints in the backyard.  I didn't plant it, obviously, I have no idea where it came from.  I haven't even watered any of the bushes or grass in more than 6 weeks.  When we went to Seattle in August, everything pretty much got scorched because I wasn't there to water and tend to things so I haven't invested anymore effort into the backyard.  The lilies have faded, the burning bush leaves have about blown away, even the grass where the duck pen use to be is struggling to come back even months after the duck flew away. 

Now we have this beautiful little flower flourishing on the threshold of winter.  It doesn't seem bothered by the shortened days and near freezing nights or the lack of water and tender care.  I guess this little flower of hope reminds me that though at times we may be clinging to brighter days like the last leaves of fall, we can still be br…

Keeping busy

Things have been really busy since being home.  I left Seattle with a pinched nerve in my neck and it is still giving me some grief which not only makes me cranky because I have had a headache since Wednesday but makes it hard to get things done with any amount of efficiency.  The kids are healing up nicely.  They still have some pain, especially when they bend down.  Today, Shelbie bumped up against the counter top and that created a shooting pain at her biopsy site but other than that, no infections so that is great.

I have been trying to stay busy and not dwell too much on the future.  I really thought I was doing well until I opened my e mail this afternoon and saw that there was a message from Dr. S in Seattle.  All of a sudden I felt sick and dizzy.  A real physical reaction and I didn't even know what the message was about.  Turns out it was just a form I need to sign so that Children's hospital can store the kids' DNA.  I was really surprised at my reaction.  Stres…

The Butterfly Guild

While we were in Seattle, we had the great pleasure of meeting with a fellow SDS mom.  She has two children but her youngest who is 2 was just diagnosed a year ago with SDS.  We have been in touch this year through the email support group I belong to.  They live in Seattle so when she found out we were coming, arranged her schedule so that we could meet.  We hit it off right away.  Her and her husband have started a non profit organization to raise money for research in the area of Shwachman Diamond Syndrome.  I am a lousy fundraiser but am looking forward to helping her when I can.  If you would like to know more about the Butterfly Guild, you can visit her website at  If you want, you can also make a donation there. 
She was so sweet to the kids.  On Tuesday afternoon, a cookie bouquet was delivered to our hotel room from her and the family and was such a kind gesture.  We look forward to staying in close touch with her. It is always great to visit wi…

Bone Marrow Biopsies

 Well, this was the week we traveled to Seattle for bone marrow biopsies.  It has been a long week and I feel like we spent more time in the car than we did out of the car.  Things went okay, each of the kids had to give up about three times more marrow and bone samples this time than they have in times before so recovery has been slightly more difficult.  We met with a different Oncologist before the procedures because our other Oncologist whom we met in August was at the Fred Hutchinson Cancer hospital doing her research work.  We really liked Dr. Pollard as well, she is young and had a good sense of humor.  The kids were anxious and all that anxiety came out in teasing each other and cracking silly jokes.  We were able to spend a lot of time talking about what the possible outcomes would be. 

While in the consults with the doctor beforehand, she had said that only Sam would be tested for Mitochondrial disease stating that Dr. S had felt his marrow was responding in ways a…

Can I let this experience just be?

That's a line from an article I stumbled upon tonight written by Ezra Bayda, "Can I let this experience just be?...  When your mind is reeling in confusion, breathe deeply into the center of your chest.  Connecting to the core of your being this way extends loving kindness to yourself even when there's none in sight."  A timely message for a difficult week. 

I have been flattened this week by criticism about taking the kids to Seattle.  They don't think I am being logical, I've lost my mind, I'm traumatizing the kids.  It's maddening and seriously, I want to close the blinds, lock the door, turn out the lights and ignore the world and speak to no one!   I asked the doctor over and over if there was any way we could stay here to do it but the answer is no.  I know we are doing the right thing but I can't stand the critics.  It has put me in a real place of confusion that's for sure. 

The other difficult part to the week is that the kids are n…

A course in miracles

Besides being a great book, my life this week, and always, has been a course in miracles. I have been trying extra hard to not worry about Seattle and how I am going to pay for hotels, gas, food all the things to get there and back.  I have been trying to live in the moment.  I shouldn't be surprised when God blesses us so abundantly because afterall, He is God and can do the impossible but I am gratefully surprised. 

Additional work this week has just fallen into my hands through no effort of my own.  When I went to retrieve the mail today, there was a profit sharing check from my former employer for $100.  I had no idea I would ever see something like that!  I have a little extra work to do this weekend and one of my cleaning clients gave me a large tip today.  I have been doing some drafting on a kitchen remodel for our Vet and in doing that will not have to worry about paying for the dog to board. 

These blessings have come at just the right time, I know, I shouldn't be s…

The schedule is what?

Well, I heard from the Doctor in Seattle and her scheduling nurse today.  The kids have been scheduled for their bone marrow biopsies and mitochondrial testing.  Since this is a public blog and I tend to play more in the arena of cautious and paranoid, I won't advertise when we will be gone but it will be before the end of the month. 

I had no idea I would have such an array of emotions and feelings.  I am relieved that we can get this over with sooner than later.  The kids are relieved too but all of us are feeling this anxiety that comes from doing something new.  Of course, BMB are not new but the hospital and city are.  We had grown comfortable with St.Lukes in Boise.  All the nurses remembered us from year to year, we knew the protocal and felt secure with our doctors and his assistants.  When we began doing them here in town, even though it was a different venue, we were still fairly comfortable because we knew most of the nurses at the hospital so that helped. 

Now, we ar…

They don't look sick

This is a piece a wrote 8 years ago in my journal.  I wanted it to be part of the journey I am posting here in cyber land...

'It's 2:00pm, the kids tumble through the front door after school bringing with them renewed energy and empty tummys.  After a quick and less than nourishing snack, we pile ino the car to tackle the chores.  It's difficult to blend into the crowds with 3 active kids, one of whom as bright orange hair!  We can always count on two or three remarks about the hair, inquiries as to its origin, followed by "Do you ever have your hands full."  My standard reply, "You have no idea!" and I feel my insides cringe with anxiety at this exaggerated understatement. 

Occasionally, the conversation will then focus on their size.  Such tiny compact frames which so obviously disagrees with their calendar age.  In a moment of weakness, I tell them of the genetic disease which has found a home within their non-consenting bodies.  They want to know m…

What happens next?

Last night, I got to thinking about the road we have been on the last 18 years.  Sam and I went to the pool last night late.  As I sat in the hot tub and watched him splashing, diving and swimming as fast as he could from one end of the pool to the other, I was amazed that this little guy so much smaller than his chronological age, who has had more challenges and struggles in 12 years than my 41 years could have so much energy at 10:00 at night.  It's hard to believe that he suffers from bone marrow failure, it's hard to believe that there is some uninvited guest messing with his body that seems so strong. 

I remember clearly that day 14 years ago when we headed down to Salt Lake for yet another doctor visit.  The situation was strange.  Shelbie was being sent to University of Utah to see an immunologist and Spencer was seeing a gastroenterologist at Primary Children's.  Their visits were only 20 minutes apart which meant I stayed with one and my husband went with the oth…