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Showing posts from August, 2011

I Stand Corrected

Well, I really didn't have a lot of hope about the appointment for Shelbie earlier today.  In fact, truth be told, not only was I negative and hopeless about the whole thing, I was nervous too.  Deep down, I didn't want to get back to life so soon after the couple of weeks I have spent with my head buried in the sand!

In case you were wondering, my head is no longer in the sand...blech!  I think I learned a few things about us while sitting in the doctor's office waiting, waiting and waiting.  Our nervous anxiety comes out in the most ridiculous joking and uncontrollable laughter.  All the waiting really got us out of control.  I was wishing we had a video camera with us to make a You Tube was so funny but, you had to be there.  

When he finally walked in the room, I was red with laughter and blurted out, "Glad you could make it!"  then Shelbie said, "Thanks for joining us."  and we all laughed again.  Seriously, he was nearly 45 min. late j…

A Little Sinister

I have had this gnawing feeling that waiting until Wednesday to take Shelbie into the Doctor was a bad idea.  I called first thing to get her into an Ear, Nose, Throat doctor this afternoon.  Her eyes just keep getting worse, her congestion but now her lethargy and her appetite.  She has hardly eaten in several days. 

I am not holding out hope that this doctor is going to have any idea what is going on or what to do for her and two months from now, I will still be writing about inflammed eyes!  I just want her fixed...apparently, that is too much to ask.  See, there is my sinister attitude coming out!  Bleh!  I am just so sick of doctors and sick of my kids not feeling normal.  It's really hard when they come to me with the usual problems of feeling sick or even new problems and I know that if I take the to the doctor's we will just hear those familiar words, 'Not sure what this means." It just gets so frustrating and hard to feel like a good mom. 

Oh well, it will …

What's the deal?

This is truly getting annoying...Shelbie woke up again this morning with bright red eyes, oozing green slime from them.  Not only that, her nose had been bleeding in the night and her teeth were caked in dried up blood.  Sorry, maybe a little graphic but true. 

I tried to flood her system this morning with histamines and antibiotics in an effort to bring her some relief.  This afternoon, her eyes have cleared up as far as the extreme redness goes but they are still goopy and slimy. 

I just don't understand what is plaguing her and how it can be hanging around for so long!  My gut tells me that this is not so much an eye problem as it is a sinus problem.  I am going to give it 3 days with this regimen I started with her today and if not, then I feel strongly that we need to get a CT scan of her sinuses to see what in the world is going on.

 She stayed in bed most of the weekend because she has felt so horrible.  This afternoon, I made her get dressed and pulled together and we wen…


It's been two weeks since Shelbie had her IVIG infusion.  She is doing better but not stellar.  She still has a mild cold but the nosebleeds, which are probably unrelated to the viruses she has had are still a big problem.  Her nose bleeds just about every single day and can last well over an hour.  We haven't done a platelet check in two weeks so it's hard to say if that is the problem or something else we have yet to figure out. 

I continue to avoid the list of things the doctor needed me to do.  I think we will get through this week then plan to be responsible next week. I know I can't put it off forever even though I wish I could.  I wish putting it off and pretending like everything is fine really did make everything fine!  Everyday, there is an ugly reminder that things are not fine.  Spencer is getting more and more nauseated no matter what he eats anymore.  We have to get to the bottom of that for sure... Oh well, til next week.


The kids have been gone since last Friday!  It has felt like a very long time but they will be home tomorrow and I am really looking forward to their safe arrival.

I have learned some valuable lessons this week that sort of caught me off guard.  I never realized before just how important respite is when dealing with a chronic illness.  There comes a point when you reach a level of information saturation.  It feels like all you accomplish in a day is getting to the next doctor appointment, sorting out the 60 or so pills for the day.  On top of all that, add in the phone calls from specialists summing up another defect they stumbled upon then before hanging up the phone, hearing their standard line, "Don't worry about any of this until we figure out exactly what it means."  Okay, sure thing, no problem... don't worry and then... someone asks when your going to finally find a job!

Sure it seems it all becomes part of the day, as common as doing the laundry.  I tuck th…

Be Not Afraid

Be not afraid...this was the title of an email I received this morning in my inbox.  I get these "Thought for the day" newsletters from Oprah.  I don't remember requesting such a thing because I don't really like Oprah but I keep opening them because they are usually pretty good messages. 

The author suggests that there are 6 things we are afraid of but really don't need to be... Just so you know, the thoughts in italics are mine, not the author's.
1.   Burglars in the house  ( It could happen)
2.   Plunging off a bridge in your car and landing in the river below
3.   An elevator plummeting to the ground ( I never use to be afraid of this but now that it's been       brought to my attention as a possibility...)
4.   Drowning in quicksand (my personal favorite since I so often find myself surrounded by quicksand but now, thanks to this article, I don't need to be afraid of it anymore!  So relieved!)  Moving on...
5.   Being kidnapped and held for ran…


The world of chronic illness is an interesting one.  I've mentioned before that I am part of an email support group.  I reported this morning the results of the kids bone marrow biopsy and the other news of abnormal telomere's and pancreas issues on the 'list'.  It's a good place where people understand the crazy parts, the discouraging parts, the sad parts and can celebrate the joys and milestones. 

Within 30 minutes of my post, I had two phone calls from mom's who are in the exact same 'limbo' we are in and whose children have also tested positive for abnormally short telomeres.  One lady even called me while she was boarding a plane.  She happens to be the Vice President of the Dyskeratosis Congenita (DC) Outreach Registry.  We were able to talk for about 15 minutes but she crammed a lot of information into that short amount of time.

Her daughter hasn't had the genetic testing of the disease but is being treated as a clinical DC patient because …

Results are in...

I finally heard from our doc in Seattle this afternoon.  After 7 long weeks of waiting and wondering we have another mixed bag of fun.  Where to start, the good news or the bad...

The good news is that all three kids' bone marrow is stable from 6 months ago.  The bad cells are still there in the same quantity, the cellularity is the same which means their marrow is basically empty of producing even a minimum number of cells.  Depending on where you stand this is either good news or bad news.  From my vantage point this is good news.  Of course I would have rather heard that things looked better but I will gladly take stable too!  So, we breathe for another 6 months and do it all over again!

The bad news...She ran some specialized tests on Shelbie which I was actually unaware of and those came back very abnormal.  It was to test her telomeres.  Hers are abnormally shortened.  A telomere's job is to protect the ends of the chromosone from deterioration. now what.  Wel…

Where's the meaning...

"What does all this mean?  There has to be some good that comes from such a crappy life."  This was the question posed to me by an aquaintance I met at the cafeteria in the hospital yesterday.  She has nine kids but her youngest two have had a summer of health problems, nothing but hospitals and trauma. In the midst of all this, she lost her job.  A job she worked at for 30 years and when she asked for time off to take care of her son for a few days, they told her she couldn't have it off and they didn't really care if she quit or not.

Her story was so familiar to me in many aspects and I wanted to tell her how relatable I thought she was, I wanted to tell her she is not alone but I found myself trying to keep a safe emotional distance.  I don't know why, it wasn't really fair but sometimes, it just feels like I am barely cobbled together too.

Even still, I left with a tender place in my heart for her.  As we said goodbye, she implored me to call her and in …

Feels uncomfortably familiar

Same room, same nurses, same antiseptic smells and even the same episode of CSI playing on the tv and the same old feeling that some things never change.  Shelbie's been premedicated and the first bottle of plasma is dripping through her veins.  
 IVIG that was planned for yesterday is actually happening today.  Yesterday turned out to be an exercise in patience. With confusion from the hospital, doctor's office and the insurance company, people just couldn't get it together in the timely manner it has happened in the past.  I guess it was for the best.  I was able to dash into the city to get a couple gifts for Shelbie's birthday, start her cake, do the laundry, pay bills and all those tasks that were waiting for me to handle. 

I really hope this is the answer to finally beating this stubborn virus.  It's really weird that last week while she had the stomach flu, her eyes were totally back to normal.  No inflammation at all but just a couple days after the flu,…

Taking the good...taking the bad.

Unfortunately, all good things must come to an end and all bad things must begin.  We will be home for just a few short hours before Shelbie will have to be in the hospital for the dreaded IVIG infusions!  She is just not kicking these viruses, surely as a result of the chemo that killed her B Cells and immunity.  Hopefully, the IVIG will give her the help her body needs to get on top of these illnesses she has.  Too bad she will have to get much sicker before she will begin to feel better.

IVIG, as we are all painfully aware, causes aseptic meningitis so I am gearing up for that on Wednesday and Thursday and then hopefully she will be well enough to celebrate her Saturday birthday on Friday because Saturday, the kids have to leave to vacation with their dad for several days.  As you might guess, that is just another cause for me to be stressed but I won't go into that now.

So, here we go again...Deja Vu!

Promises to keep

"We have promises to keep and miles to go before we sleep" Robert Frost
This quote has been on my mind alot this past year.  It has kept me going when I felt too tired to go on.  I never anticipated how much harder life would become with Shwachman Diamond as the kids' got older. 

I guess that's probably a common reaction; adversity strikes, you find a different rhythm and life becomes a new variety of normal.  The problem comes when you assume it will never change again but then it does.  It seems your way is hedged and finding that rhythm and a normal you can live with becomes more challenging. 

This year, SDS has felt so big.  So big there has been no way over it, no way under it and no way around it.  It has stalled life, kept me sputtering and spinning and it feels like I have accomplished nothing in over a year but just trying to keep us all above the level of the drowning waters. 

In reality, there isn't time to deal with distress and as much as I would …

Less than patient

Things have sort of gone from bad to worse on this 'fun' little getaway.  Tuesday, Shelbie started throwing up...throwing up like crazy, every hour all evening and all night.  Yesterday, she stayed in bed all day with nausea and pain but her eyes seem a little better.  I was going nuts trying to keep clorox on anything she touched so that it doesn't just spread through the whole house.

Last night, Sam was feeling sick and I lost my patience.  I felt really bad because they thought I was mad that they were sick.  I wasn't mad that they were sick, I am just so sick of never having a day without worry or complaint.  It's just getting so old.  I seriously can't remember the last time we just had a fun time without anyone being sick, without being poor...It's so frustrating.

I think Sam had heat stroke.  He played all afternoon on the river and it's super hot here.  By 9:00pm his face was still flushed and hot and he was weak and exhausted.  It took me ove…

Second Verse...Same as the first

Did you hear all that screaming last night?  It was me because guess who has a raging eye infection?  YUP, none other than my dear Shelbie!  What the What?!!!  Unbelievable!!! Better than the eye infection...we are at a family reunion!  Oh joy!

I talked to our doc and I guess he is done 'waiting' to see if she kicks it and wants her in the hospital for infusuions ASAR- As Soon As its Reasonable.  So, now I am in the unlucky position to try to decide if we call it a day and get back in the next day to get her to the hospital, take her to the hospital here or continue with our plans and do it when we get back.  I don't know what to do. 

I have tried to get her to make the decision but she is torn.  She really wants to be here and spend time with my family that we don't see from Canada very often but she also doesn't want to end up in trouble with a massive infection that overtakes her body.  Aggghhhh.  Is it too much to ask to just have a break?  Just one week of …

Facing your fears

At every stage in my life, there's been something to worry about.  When I was a teenager, my best friend was really sick.  I always worried about what I would do, what I would become if I lost her.  Well, one day, I did lose her.  I had convinced myself that I would never survive without her.

When I got married, I worried for a moment that it wouldn't last.  I remember the morning of my wedding, I said to my soon to be husband..."Are you in this for forever cause if you have the smallest doubt, tell me now cause I'm in it for eternity."  Well, forever ended up being 14 years and I had convinced myself that I would never survive.

Two years ago, the economy tanked in our little town and my biggest fear then was losing my job.  I remember telling a friend, "Surely, if layoffs happen, they won't lay off the single mom." Well, they did and I had convinced myself I would never survive. 

After a half a lifetime of experiences and trials I had convinced my…


Thank goodness for internet support groups!  I sent a ranting, rambling, sad and depressing message to the email support group for Shwachman's that I belong to over the weekend.  I got a lot of supportive messages but one message really saved my life. 

The day after the kids' bone marrow biopsies, we met another SDS family in the waiting room while we were waiting to start Shelbie's infusion.  Their son had just completed his biopsy.  His mom emailed me tonight to let me know that our doctor has been gone on vacation this past week and won't be back until next week!  She was also concerned about her son's results and after going through a few nurses and some red tape, was able to get another doctor to sign off on the results and send her hard copies and turns out his news wasn't as good as they were hoping for.  

It brings me a little relief, a little breathing room to know that she is out of town but it doesn't make this waiting any easier.  I find that …