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Showing posts from July, 2011

Sometimes, the questions are hard

Well, the elephant didn't stay in the middle of the room for long.  At about 1 in the morning, it decided to have a seat on my bed.  I don't know if you've ever experienced an elephant sitting on your bed but it doesn't promote that quiet, sleepy feeling you long to have when the sky is dark and the crickets are keeping time outside your window. 

Yes, I was awakened by my sweet Shelbie last night.  She is not the elephant but she brought with her the elephant.  The sobbing, the shaking, "I can't sleep mom.  I need a sleeping pill."
She is so worried about the bone marrow biopsy results and the virus that is running rampant in her body. 

It use to be, when they were little, the questions were so easy or at least of little consequence to the deep matters of life; Why is the sky blue, Why does rain drop, Where do babies come from, Are we there yet?

Now, thanks to a host of defective genes, the questions are a lot harder and my answers are even more lame th…

The Elephant

A few days ago, we had this amazing thunderstorm blow through.  It was the kind of storm that was preceded with a very eerie calm.  The sky was mottled with shades of yellow, blue, orange and grey.  The sun was shining but filtered by billowy , building clouds.  The air was cool and the smell of rain was prominent yet other than the strange colors in the sky it was hard to imagine that a storm of such force was about to unleash.  Not even 10 minutes later, the sky was pitch black and rain poured down from the claps of thunder and jags of lightening. 

That's what today has felt like, a big storm brewing!  We had a little fun before going to Shelbie's Oncology appointment but now the blue sky seems to be fading and there is a feeling of unsettling calm.  I'm not sure if I am having the 'mother's intuition' feelings or just getting worked up about nothing. 

For a little good news, Shelbie's platelets were way up!  220!  Up a 100 from the end of June.  Her wh…

A picture is worth a thousand words

Well, it arrived.  The Mito Cocktail came today, AWESOME...and by that I mean, CRAZY and by that I mean, SERIOUSLY? WHO BUYS MEDICATION BY THE CASE LOT?    Ahhhhh, we do, we do now!

You might be thinking this supply will last us a few months...try 5 weeks roughly.  Shelbie took her first dose just a bit ago, Sam, well, he is not a happy camper tonight.  After a big melt down of alligator tears and the standard rhetoric, I hate my life, I hate being sick, Why do I have to be sick?  When can I just be normal?  I'm not taking more pills, I don't care if it makes me better or not!
So, I did what any wise mother would do, I bribed him.  I hope the morning dosing will go better.  Sam has some unique challenges when it comes to helping him understand things like this.  It's really hard for him to process the 'why's' of it all. 

4 weeks

Well, it's been 4 weeks since the kids had their biopsies and no news! Thank goodness for distractions cause I am just now starting to get a little nervous in anticipation of the results.   I guess a quiet, slightly stressful weekend will do that to you. 

I guess the anxiety comes because this is not a typical length of time to wait so what does that mean?  Could it be that our doctor is just out of town enjoying Disney with her kids or is she working feverishly to figure out what to do now because the results were unfavorable?  Is it time to get serious about looking for donors, is there going to be a move in our near future...the speculation goes on and on. 

I know I need to practice what I preach and try to stay in the moment.  I saw a quote today that said, "If you are depressed, you are living in the past.  If you are anxious, you are living in the future.  If you are at peace, you are living in the moment."  I'm gonna say that I am all three this week and ye…


Things have been quieter this week, only one trip to the doctor so far!  Happy about that so now I have some time to do a little thinking about things and believe me, there is no shortage of deep thoughts right now. 

I haven't been feeling awesome for the last several months and just before leaving for Seattle, found out that my body is just not functioning as it should be.  Mainly, my ovaries have given up their job to keep my hormones in check.  I'm sure that doesn't explain all the discomfort I continue to feel but it's a start. 

This news came at a very significant time.  When we met with the specialists in Seattle, I mentioned my current problems because they are doing a lot of research on our family and have instructed me to keep them up to date as changes in my health or family health occurs.  I let them peruse my lab reports and such.  I also gave them a little history on my family as well.  The neurologist was intrigued because ovarian failure, as he referre…


I find myself saying "Ouch" almost everyday.  First of all, my head is still killing me from where I slammed into the car door last week.  Turns out I mashed a nerve in my head and boy, is that painful.  When it isn't hurting, it feels like worms crawling around inside my skull and I have no feeling on my scalp from the forehead all the way to the back of my head.  Sometimes, I just get these shooting, paralyzing pains that make me want to put my head through a brick wall.  I know, it sounds drastic but it really hurts. This is the first time I have experienced nerve pain and hopefully the last.

So, compounding my already aching head is the bill I received last night from Seattle Children's.  Of course, insurance is still pending and it will take a bit to see how things shake out but the grand total just for one kid was....$26,000.  I have yet to receive the bills on the other two but I'm pretty sure they will read more of the same doom and gloom. Can you imagin…


I found myself drawn to this very interesting book called the Survivor's Club.  The author, Ben Sherwood explores the world of survivors; survivors who have beat the odds from a plane crash to being stabbed in the heart to some of the worst health crisis.  With the help of science, he tries to figure out who survives and thrives and who gives up and dies.  It's been a very intriguing read.

The author talks about some intense military training he was engaged in.  At one point, he was strapped into a metal contraption and dunked to the depths of a deep pool. After sinking to the bottom, he has to go through a series of tasks and find the escape door in order to reach the surface of the pool.  He talks about the panic he felt, the disorientation, the turmoil at trying to escape.  He remembers the rules he was given before the exercise in order to survive the test.  The military believes these rules will assist anyone in any trial to survive. 

The first two rules are as follows:

Bring on the Rain

Funny how the tiniest little thing, from out of the blue can set off a flood of memories that stops you in your tracks.  Has that ever happened to you? 

There I was in my kitchen, cleaning, cooking, the usual tasks and coming from the direction of the kitchen table, I hear 'our' song.  I stopped, turned to Shelbie and we both scrambled to close our gaping mouth.  It's been 8 years since I heard that song, Bring On The Rain, by JoDee Messina. It was a song my kids and I listened to every night.  The words described so well what life was like for us.  With the flood of memories came the flooding of tears.  What a year that was...8 years ago!  A year I hope to never experience again.  

Life was not easy then.  The kids were sick, I was sick and separated from my husband and it seemed that the problems would never end.  Somehow, the words to this song, held a promise of better days and so we held on to tomorrow, embraced the rain and kept fighting our battles. 

Bring On The …

Brilliant Idea...

This week, Sam leaves for Scout Camp.  I'm not entirely thrilled about him being gone for 6 days but for the first time in a long time, he is excited to go.  Of course, I will be home worrying about what he's doing, how he's feeling, if he remembered to take his meds and then all the 'What ifs'...

It was a chore to get all his meds together and ready to go.  I didn't have a pill box big enough to hold everything and besides, pill boxes don't travel well.  Inevitably, by the time the gear lands at the campsite, the lids have flipped opened and pills are laying in the bottom of the duffel bag.

I had a brilliant idea to package them with my food saver.  It was a little more time consuming but I love how it turned out.  Sam will only have to worry about grabbing two packs for his morning meds, one for lunchtime meds, one for dinner meds and one for bedtime meds and one pack that contains his 'as needed' meds.  The best part is, they are also waterproof…


It's been really interesting to watch Spencer these days.  He seems tired, somewhat depressed, bored, not feeling well but at the same time, very proactive.  It's has caught me a bit off guard.  Not the tired, depressed, sick parts but the proactive parts.

Our appointments were long, very long and sometimes our meetings with the doctors would last up to three hours.  After about the first 15 minutes, I figured the kids were not paying attention anymore, just playing on their Ipods.  Turns out, Spencer was paying attention.

His friends and his friends' parents have been asking him over and over what was wrong with him, what the doctors found out and so he has been sharing information.  Every night, he brings up ideas on how he can feel better, ways he can take better care of himself and vitamins and stuff he thinks might be of good use to him.  Tonight, he said he met a guy who claims he can reverse the damage done by Ankylosing Spondylitis, the disease that I have and the …

Being home

It's been a crazy whirlwind of activity since being home.  I have watched the kids take their turns at having little meltdowns.  I think since we are out of the 'pressure cooker' of doctors and testing, they are letting off a little steam and frustration.  Well, maybe I should correct that, we are sort of out of the pressure cooker. 

The week has been pretty much just as I thought it would be, lots of distractions that just keep me from processing anything very well.  Some of the distractions have been along the lines of mundane like laundry, paying bills with money I like to pretend I have, running to the pharmacy, running to the doctor, running back to the pharmacy, get the picture. 

Shelbie's eyes continue to be a problem of sorts.  I finally took her in to see an Ophthalmologist yesterday and we finally have a name for the crazy eye infection- Epidemic Keratoconjunctivitis.  You never want to see the word 'Epidemic' in front of an illness y…

No such luck

Well, I was hoping that this week at my parents would allow us to just chill and take a load off from the last two weeks but it seems that will not be our luck. 

Shelbie continues to suffer immensely with this stupid eye infection.  Yesterday was so bad.  It was not only the discomfort she was feeling from day three of her eyes swollen and glued shut with infection but her anxiety was rising too and that complicated the day. 

Finally, at about 10:00pm last night, I got the hairbrain idea to call the after hours on call Oncologist back at Seattle Childrens.  The doc was so nice and looked up Shelbie's past labs and notes from last week and then instructed me to take her to the nearest ER.  He called ahead and gave the ER docs here her history and a detailed protocol of how they should treat her and then the docs here in Coeur D Alene were to report back to Seattle all the findings and results.  It worked like a charm and I felt relieved that Seattle did that for me.

The hospital …

Abracadabra...Hocus Pocus....

To freak or not to freak...that is the question.  Who knew the craziness of no immune system would happen so soon? 

The day we leave Seattle, Shelbie gets Pink Eye!  While on the highway driving to my parents, I could tell it was going to be a bad one so I called to our clinic at home to see if one of the docs could just call something in that I could pick up at a Walgreens by my parents' house.  They are awesome...and they did.  We started it right away.

Yesterday, the infection looked to be headed out of control and I was getting pretty worried.  It had spread to both eyes and they were nearly swollen shut with infection and inflammation.  I have never seen a case of pink eye this bad and we use to deal with it alot when the kids were younger. It was getting worse despite the heavy dose of antibiotics Seattle put her on and the antibiotic drops we had already started so, I decided to freak and I took her into an Urgent Care here in Northern Idaho.  Mind you, I was only freaking…