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Showing posts from November, 2010

Pioneer Children

There is a song the kids use to sing when they were little in Primary at church.  It was called Pioneer Children.  I think that title is very fitting to use for the circumstance we find ourselves in. Just as the Pioneers walked long distances to create a better life for themselves and those generations to come, my kids are also part of an elite group of children living with SDS.  Allowing doctors to study them so that life will be better for those still to be diagnosed. 

 When I spoke to our doctor yesterday, he said the kids were in some ways, charting through new territories.  Of course lots of people have ITP and we are not the only ones with SDS and if it turns out the kids have mito disease, we won't be the first for that either.  The doctors are barely skimming the surfaces of these diseases as far as research goes.  Much has been learned but there are still so many missing pieces.  Unfortunately, we find ourselves stuck in that place where there is no sure treatment. We try…

A Little Reprieve

Sunday ended up being a better day.  The headache was manageable and she had a couple of visitors as well.  It  perked her up and kept her spirits up.  One thing I can say about us, we still seem to find our humor even when things are pretty gloomy.  People hear what Shelbie is having to go through right now and I am sure they think the feeling here is pretty heavy and depressing.  It really isn't.  It's actually pretty upbeat and positive.  That's not to say we don't have our moments. Sometimes, I find myself wondering how the world can go on when we are stumbling so much.  It doesn't last long and hopefully, is normal. 

Today is pretty good so far as well.  Shelbie had signed up at the beginning of the month to work today and tomorrow.  She had a one hour project to do at Walmart for Crest, setting up a display and such and one to do tomorrow at Broulims.  Once you sign up for a project, it's pretty hard to get out of it.  We headed to the hospital first thi…

ID Tags

This week, being at the hospital so much, I have been intrigued with the nurses ID badges.  What is up with that?  No one, not one person showed any resemblance to their photo.  It was really weird, even the BYUI student paramedic we had last night.  His picture had him looking like a 90lb 15 year old but in reality he looked to be in his mid twenties and definitely not 90lbs. ha ha. 

Okay, just thought I'd throw that out there.  We had high hopes for yesterday, we really did but the headache kept getting worse throughout the day, the fever lingered and by evening the vomiting started.  Try throwing up when you already feel like your head is going to explode.   I've never done that myself but to watch Shelbie was less than entertaining.  My heart broke for her.  There was nothing more I could do and felt helpless so I took her up to the ER.  They started fluids immediately and morphine.  That helped her settle down and the pain eased up a bit.  She had two bags of fluids and …

Running out of snappy titles...

I am running out of snappy titles for these posts.  Suffice it to say, all the days lately are long, hard or tiring, disappointing and frustrating.  I have no idea what to call today's post, 'Headache from Hell'.  Shelbie-Sue was not lucky enough to avoid the worst headache of all time.  It isn't quite as bad as the last time she had IVIG but it's a 7 on the infamous pain scale.  Her platelets are coming up which is dandy.  She has a whopping 24 now!!  Not good at all but 23 better than 1!  Funny how what makes us happy shifts.  I use to be really happy with 100, even 50 didn't worry me too much but after living with 1 for a couple of days anything is a relief.

I am not enjoying the learning curve to all this.  Immune deficiency disease is not something I am very familar with at all.  It took me 18 years to get a handle on the ins and outs of the basic SDS disease.  I am part of an email support group and they have been helpful with information and ideas of wha…

Super Long Day

About 7 hours of infusion and we are done for today.  More tests tomorrow but that won't be a big deal, I hope.  The nurses today were terrific!  They were so happy, helpful and had a great sense of humor and treated Shelbie as if she were their own daughter.  That made all the difference in the world.  They took it nice and slow and loaded her up with benedryl and tylenol beforehand in hopes of avoiding the nasty side effects.  She spent all day with a low grade fever and pretty low blood pressure.  Not sure yet if those symptoms will prove to be a problem or not.  So far, no headache to speak of so we may not have to deal with aseptic meningitis. 

Her counts are still in the tank so she is far from out of the woods, especially the bleeding risks since she is still functioning on an insanely small number of platelets.  This is no immediate fix that's for sure but it's a start. 

Even though this last week has consumed my thoughts, still in the back of mind is the nagging…

The fun begins soon...

Half an hour and Shelbie starts the IVIG infusion, unless by some miracle her body kicked into gear and is now making platelets hand over fist!  It could happen, it's happened before but only time will tell. 

Here are a few facts about IVIG
IVIG stands for Intravenous Immunoglobulin
It contains the antibody IgG that is extracted from the blood plasma
It can take up to 20,000 donors to get enough IgG for one treatment
Results can be seen in 24-48 hours though some may have to wait 3-4 weeks before seeing an improvement
Some may never see good results from this treatment.  After 3-4 sessions of infusion and no results, they
        abandon the course of treatment. 
If good results are seen, infusions can happen every week or every couple of weeks.
The cost of one treatment......$10,000.  Merry Christmas Shelbie!!  ( I'm just kidding of course)

This has been one expensive fall.  $40,000 for bone marrow biopsies and mitochondrial testing.  There is a shortage of platelets.  One…

The latest

It's hard getting sick over the holidays.  Not much could happen today.  Tomorrow morning we will head back into the hospital for an IVIG treatment.  Hopefully she won't have too many reactions from it and maybe by some great miracle her platelets are coming back on their own and in my perfect world, we won't have to do the infusion.  It never hurts to keep hoping. 

Today has been quiet but filled with lots of well wishes and warm thoughts.  So many kind people extending invitations for me to join their families.  I was able to take a good long nap and felt much better about things afterwards.  I really needed some quiet time when I could just let the feelings come without trying to hide them or put on a facade that everything is okay.  I felt bad saying no to such kindness but it was the needful thing. 

I will update more tomorrow.  Things change quickly in our little crazy world.  You really can't predict what will happen next even though we like to try.


How do you spell INSANITY

I will tell you how to spell insanity; R -E -D  C- R -O -S -S.  I hate to give them a bad rap but they seriously messed up today!  This morning, Shelbie was suppose to get her platelets at 8:00am.  We arrived early, ready to deal.  The platelets had not arrived as anticipated because of the storm that has been in the area for a few days.  Salt Lake had grounded flights last night.  No big deal, she said they tracked the package with Red Cross and the platelets had been irradiated and they had been put on the first flight out this morning so it would just be a couple of hours.  We left, went home and waited for them to call us back up.  The nurse called around 11:00 to say that they didn't make the flight as planned but they would be put on a later flight but would arrive at the hospital at 2:30.  We went back up at 2:00 to get the IV started, bloodwork done etc.  2:30 came and we were anxious to get things started.  Her platelets had now dropped to 1000.  Very dangerous at this po…

Who was I kidding? Ha, ha, ha!!!!

It's 11:35.  It's been a horribly long day with Shelbie in the hospital and waiting for Red Cross to find some intelligence.  Long story which I will report on next, in a different post entitled something like, "How do you spell INSANITY?"  Anyways, Shelbie is not out of the woods, not by a long shot and she is anxious about going to sleep so I will stay up through the night to be sure she doesn't have any bleeding issues, that means a lot of time to blog! I have to say, when I opened up my blog tonight, I realized that two days ago, I said how happy I was that this was going to be a quiet week "medically speaking" and was looking forward to a "happy, healthy" Thanksgiving.  How funny!!!  No really, it makes me can't blame a girl for hoping!  Medically speaking, it has been chaotic, bizarre and so overwhelming I don't even think I am living in the same plane as the rest of you and I am so sick of speaking in medical terms I…

Really tough day

Today came at us from out of nowhere.  I had an early morning doctor appointment and when I came home, Shelbie was up and announced that she had lots of petichae.  Petichae is basically broken blood vessels, in Shelbie's case, happens when her platelets are low or dropping.  I wasn't alarmed or even really that concerned but thought with the holiday week, we should at least get a CBC just to be sure she wasn't in any danger.  We went with the boys to shovel the driveway of a widow and then drove over to the oncologist's office.  We have had a huge storm in the area for a few days now and we arrived just as they were closing down.  Most of their patients cancelled and they wanted to get the staff home before things got worse.  I told them it would just be a quick CBC and didn't even need to see the doctor since I can pretty much decipher what all the counts mean. 

We all sat in the waiting room placing bets on what her platelet count would be.  The winner had to bu…

Daring to hope

With Thanksgiving this week, I am really hoping the kids stay healthy.  There are sick people all around us and it seems impossible that we might be so lucky as to dodge the strep or flu viruses but I am crossing my fingers and hoping.  Medically speaking, we should have a quiet week.  Tomorrow, I will spend a fair amount of time working with the National Shwachman Diamond Registry to get the kids, myself and extended family members registered.  They sent the large, overstuffed envelope of questions and procedures for me but it has to be filled out with a nurse from the registry so that will happen tomorrow.   I'm not exactly sure what being part of the registry means but it is something that our Oncologist deemed absolutely necessary so I suppose I will learn more tomorrow.  Other than one doctor appointment for Shelbie, Spencer and me, we have no other doctor visits planned. So, here's hoping for a healthy, happy holiday!

If I didn't have bad luck...

Wow, what a day!  Tuesday, we spent the afternoon at the Ear, Nose, Throat doctor.  I believe, I would rather see a dentist for a root canal than have someone messing with my ears, nose or throat.  I had anxiety just watching what Shelbie and Spencer had to go through; air pushed through their ears, plier like things up their nose and all sorts of poking and prodding.  Yuk! 

Spencer was there because he is still having problems with his soft palette in his mouth feeling swollen and enlarged. Back in April, he sneezed and seconds later, his uvula and palette were resting on his tongue.  No one could figure out what was going on and as a wild guess, threw out allergies as the possible problem.  Spencer complains about it alot so I decided it was time for a specialist to take a look. The doctor wanted to do a scope while we were there.  They put a tube up his nose then dropped it down his throat.  I felt so bad for him.  It looked horribly uncomfortable and he takes after me with a devi…

The Giant Awakes

It is interesting to me how easily I am tricked into this false sense of security.  Like being lulled to sleep on a gently rocking boat.  How easily I try to forget all the issues that come with chronic illness in hopes of eliminating stress.  Not just try to forget but actually compartmentalize it all so that it disappears somewhere in the back of my mind.  For awhile, I really believe we are normal as the most normal family could be.  From out of nowhere, the boat isn't rocking so gently anymore and I can't believe I've been duped again!  Perhaps it's a good thing but it feels like ripping a bandaid from freshly formed road rash that covers my leg. It stings. 

This week seems to have lasted forever and existed before time.  Results are a distant memory until the tiniest thing wakes up this giant of anxiety in me.  Spencer called tonight.  He is sick.  The symptoms are vague, no energy, extreme fatigue,nausea, no fever, no sore throat, nothing that would make me thin…

Silent Warriors

This has been a long week yet sped by at the same time.  Monday feels like forever ago.  The kids have been up and down with little viral annoyances or one thing or another most of which needed the attention of a doctor.  I took them all in on Wednesday afternoon.  Shelbie's platelets are running low again.  Not horribly low like we have seen in the past but they have dropped steadily since August, in fact dropped by 70,000 so now they are below normal.  I didn't really show much reaction while in the office but it was discouraging to hear. 

The following afternoon, when I completed my cleaning jobs, I headed to the library and ran some other errands.  It seemed that everywhere I went, I ran into other moms who have a child with cancer or who are going through chemo treatments with a child.  We know of each others struggles but don't really know each other.   We exchanged the international signal for mom's who take care of sick kids, a tender smile and a sympathetic n…

Baby Panda Sneezing

This is the cutest video.  I love how the mamma bear is just chillin' and then 'freaks' when her baby sneezes!  It's as if she is saying, "What the heck?!!"  SDS is like that sometimes,  things can be just fine and we are all chillin' and then out of the blue...someone sneezes!

Sufficient for the day

Yesterday, was a particularly difficult day and it sort of caught me off guard.  I guess after doing the mental and emotional calisthenics that we have been doing for an extended period of time, I was more exhausted than I realized.  I spent a lot of time just thinking about things and did some reading before going to bed at a very late hour. 

I read a passage in Matthew, a common phrase reminding me to 'consider the lillies'.  I've read that passage a million times, it has been a favorite since I was a teenager.  It starts out, "take no thought for your life, what ye shall eat, or what ye shall drink..for your Heavenly Father knoweth that ye have need for all these things."  It concludes by saying "take therefore no thought for the morrow; for the morrow shall take thought for the things of itself."  I really needed to be reminded of that.  I spent so much time worrying about a job, health insurance, financial issues, how I will pay for all these medi…


It's been an exhausting 31/2 weeks!  We finally got answers today!  Before I get to the results, I have a confession to make.  I wasn't going to say anything but told my kids today so now it's okay to blab it on a blog.  The Dr. called last Wednesday!  Ya, but I wasn't home.  Shelbie was though, looked at caller ID and it said 'Fred Hutchinson'.  She didn't know who Fred Hutchinson was so didn't answer it.  I checked caller ID and messages faithfully but I didn't recognize the name either.  I was so focused on looking for 'Seattle Children's' to show up.  Fred Hutchinson is the cancer hospital in Seattle where Dr. S does her research from!  For some reason, the message didn't show up until Saturday night.  She didn't give any results on the message, just that she needed to talk to me.  The rest of the weekend dragged and I only slept for 3 hours on Sunday night.  I was determined to swamp her with voicemails and messages until sh…

Wanna Help?

I know I have posted before about the Sullenger family.  I don't know them personally but have been interested in them since their only child died this past August.  They are in the middle of this awesome project to honor their daughter Preslee on her third birthday which would have been in December.  They are making tote bags for Primary Children's Medical Center PICU for parents who arrive in an emergency situation and need some essentials. You can visit the blog they have set up for this event here.  Once on their blog, you will see a list of things they are still in need of.  I just thought with the holidays just around the corner, you may be looking for a family service project to do and I think this is a great one!  Wanted to pass along a little cheer!

Homeless Shelter

Last night we spent the afternoon and evening at The City of Refuge, a men's homeless shelter in Idaho Falls.  It was the best way to end a busy week.  I spent the day cooking and baking.  We arrived at 4:00 and got busy setting up chairs, filling water pitchers and getting all the food set out and warmed back up.  I was so proud of my kids!  They all jumped right in to work and didn't even have to be told what to do.  They even organized themselves for the assembly line of filling up the plates.  It was such a great feeling to be lost in helping other people.  We were all happy and enjoyed getting to know the director of the facility and some of the men who had been checked in for the week.  It is a very humble place, as you can tell from the pictures, they don't have much but boy, there was such a great feeling there.  God is watching over these people even though they are struggling through hard times. 

People started coming in around 5:30pm, dinner wasn't served u…

It's not like I'm going to die, right?

No one has ever died from waiting have they?  Just checking...cause I feel like I may be dying, not sure though, could be the crawling out of my skin feeling, or the fact that I want to throw a chair out my front window!  Stick a fork in me cause I am DONE!  Done waiting, done being patient.  Seriously? Another weekend without knowing what is happening to my kids? 

Maybe today wouldn't have started out so rough had I not checked my email to find out that a friend who has a child with SDS and Mito was just told last night that her son has Myelodysplasia but because of the Mito cannot go to transplant!  Never in my life have I used the word 'unfair' but today, I think I will.  It's unfair that this single mother, whose husband has passed away, now watches her only child struggle with bone marrow failure, mito, and a heart condition along with failing eyesight.  He is 15 years old, and it's unfair.

And then....I tripped

So, I continue on with my strong week plan.  Today, I felt like a boxer in the ring, getting ready for the final championship.  I stood in my corner, a spring in my step, my muscles were loose and pliable, I felt confident, ready for the challenge of the day and came out of my corner swinging.  A productive, positive outlooked dripped as energy spilled all out around me.  It was going to be a good day and then...I tripped.

That's right, fell flat on my face tonight!  Life crept from behind and delivered a quick jab to the heart of the matter leaving me on the ropes.

Last week, the kids had heard about a fundraising dinner that Red Robin was hosting to raise funds for a family whose son was just diagnosed with Mitochondrial disease.  They suggested we should attend to show our financial support.  That seemed to be a great idea and fit right in with my 'good deed a day' plan for this week to keep us occupied instead of wondering why we haven't received any results.  It w…

Planning a strong week

As tempting as it is to hide out, lay low and prevent crazy from setting in because we are still waiting for results, I am reminded of a talk I heard once from Marcus Buckingham.  He suggested we need to "Plan a strong week. It isn't just going to happen on it's own"  What he meant by this is to build into the week things that will energize and strengthen you.  So how do you know what to plan that will strengthen your week?  If you look forward to something and time speeds up, then it's a strength.  If you can't concentrate on a project or job than it's a weakness.

I have tried to do just that.  Aside from the usual cleaning I have to do for people, I have planned one service activity each day for myself and the kids to do. Helping other people is something that energizes me. It is true, the best cure of stress and anxiety is to get out and help someone else be happy, accomplish their goals, feel loved and taken care of.  It's one of the great 's…