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Mysterious Petechiae

Well, I got Spencer into the doctor yesterday and he has Palantine Petechiae.  I had never in my life heard of that but as soon as the PA looked in his throat, he knew what it was.  Spencer's platelets checked out normal thank goodness.  The PA said that Palantine Petechiae usually preceeds a big bacterial infection like Strep throat or Mono.  We started antibiotics yesterday but he is not feeling great.  He tried to go snow boarding today but ended up coming home after lunch. 

Upon further reading, the petechiae usually starts 3 days before the onset of symptoms.  I am pretty surprised we have never experienced this before. It amazes how many new things we learn each day about this disease. 

Hopefully, the antibiotics will cover anything that could crop up.

Almost...

The last few weeks have been sketchy as far as the kids' health is concerned.  I was glad that I could send them off to their dad's in relatively good shape.  Shelbie was still yawning chronically and nauseated more than not but no new symptoms, until today of course, Christmas Day!  We almost made it through Christmas without any problems!

Sam was doing well and other than some frost bite and wind burn on Spencer's nose from snowboarding a couple of days ago, he was okay too, until today of course! 

When the kids were here, Shelbie couldn't stop belching.  I'm talking about loud, obnoxious belching.  It's been happening all day and continues tonight.  In 19 years, I don't recall ever hearing her belch or burp really.  Maybe once or twice but today, she was doing it every few seconds just like the hiccups only it wasn't hiccups.  Even the boys were not impressed and you know boys, they think any bodily noise is hilarious.  Spencer said, "Mom, make…

Compassionate Care

Yesterday, I got a disturbing call from an Administrator at the hospital.  They had received a report that one of the nurses we had for Shelbie's infusion had started crying and that I slipped Shelbie something that had not been approved by the Physician. 

I was surprised that she was going here.  Our conversation lasted well over a half hour as I explained to her that yes, indeed a nurse we had a month ago, cried when she couldn't get the IV started after 3 tries and took her even 7 tries before she got it.  We had a nurse last week who also cried when she couldn't find a vein on the first try.  She left the room and sent in someone else to try.  Apparently another co-worker had filed a complaint against them. 

The Administrator was all over the place apologizing that they did not act professional.  I interrupted and said, "Hey, wait a minute.  We were not mad, we weren't even mildly annoyed in fact, both Shelbie and I were crying too!  It was a moment when we tr…

I gotta be honest...

I am looking towards the new year with a hint of trepidation and worry.  I know, it should be a time of hope and new beginnings.  I guess this year has just about drowned me and the effort it has taken to stay above the turmoil has been great. 

I am a little scared about what we will find in the coming year.  Yesterday, Spencer came home complaining that his arms were numb all day.  I just shake my head anymore and hope it goes away because lately, our doctors have been less than helpful.  I don't know what to do about numb arms.   Shelbie continues to yawn and feel nauseated all day, every day.  She is still weak and exhausted.  Sam is hanging in there, thank goodness! 

It is just so hard to watch my kids suffer so much at times.  It is often more than I think I can bear.  Sometimes, running away seems like a great idea but I would probably get no further than the mailbox and turn back.  They can't run away from this disease so I shouldn't be able to either.  Everytime …

The Weird and Wacky

Do you believe that history repeats itself?  I'm not sure but this week as I have been nursing Shelbie back to health, I recognized a new symptom.  Well, I guess it's an old symptom that has been gone for years but suddenly showed up again and boy, is it weird and wacky! 

Yawning.  Yep, chronic yawning.  She even yawns when she is sleeping. The yawning is continuous at times.  When it's happening, she is nauseated, dizzy and jittery.  When it first started earlier in the week, I didn't think much of it until yesterday when the yawning and nausea were out of control.  I gave her Zofran for the nausea but we just couldn't get ahead of it.  Heart palpitations started too.  Last night, I realized that this was the same thing Shelbie dealt with years ago from ages 6-10 off and on.  She would get so panicked when it happened saying that she felt like she couldn't breathe.  For the life of me, I can't remember what we did to fix it back then.  Actually, I don'…

Happy Anniversary

Today is Shelbie's last IVIG infusion for 2011.  It's hard to believe that we have been at this for just over a year.  Each month, it gets harder and harder for them to find a vein.  Today was just as hard.  It took two nurses numerous times before they could get the IV started.  I am hoping we can avoid a central line but her veins are so scarred and chemo therapy changed the size of them it may be our last resort.  I am glad that they got her in today.  She has been sick since last Saturday and really sick over the past 24 hours.  I was afraid I was going to have to take her up to the ER last night so this infusion is actually a relief of sorts.

January, we will start off the new year with another infusion and a new deductible.  Oh Joy!

So, getting to my point of this post, this week marks the 12th anniversary that my kids were diagnosed with Shwachman Diamond Syndrome. Not a 'happy' anniversary, just an anniversary. No matter how long I live, I will never forget t…

Rocco Baldelli

Have you heard about the Major League baseball player named Rocco Baldelli?  You can read about his story by following this link.
http://sports.yahoo.com/mlb/news?slug=ge-baldelli090808
Baldelli is a now, 29 year old with Mitochondrial Disease.  His story caught my attention on many levels.  I think the article is well written.  I hear lots of stories about kids dying from Mitochondrial disease but rarely do I read a story about someone living out their dream.  It's not been easy for Rocco and he has had to retire because of his health problems but what a great example he is of someone who didn't give up living. The multiple injuries he has sustained rang a bell for me as I think about my kids.  Spencer has had so many breaks that were a result of something so simple as kicking a soccer ball.  Sam, most recently rolled his ankles while running and he still has a hard time walking, even two weeks later.  They are easily injured and slow to heal.

The article does a good job of e…

The Butterfly Guild

I have some fabulous friends in Seattle.  We only met last year but have quickly become super good friends.  We email each other a couple of times a week.  Just over a year ago, they started a non profit organization called The Butterfly Guild and is associated with Seattle Children's Hospital. They raise money for Shwachman Diamond Syndrome Research.   We have been able to get involved a little bit to help in the fundraising and do some other things for the big dinner and auction they have annually.   For 2012, the dinner is happening on January 21.  If you would like more information or would like to donate to help this cause, check out their website HERE.     They have been working hard all year to plan this event.  I have been helping with the fundraising cause though I have discovered that it is not my strength and they are way better at it than I.  However, I have been able to help with some of the decorations even though we live so far away.  Today, I made 250 place cards …

On our own

Just a quick update, Spencer did okay snowboarding last weekend.  He was so excited to tell me that he reached speeds of 49.6 mph coming off the mountain.  Oh joy! I tried my best to be happy for him and I hope it was convincing but inside I felt sick.  He feels so accomplished I know I can't squelch that, especially after the year he's had.  It's been tough.  It is tough.  The fallout of that day did indeed come but not as bad as I thought it would be.  He is doing okay and for that I am glad. 

This week has been hard.  I felt more alone in dealing with the kids' problems than ever. I hate the feeling of being on my own in the care of my kids.  It's getting really complex and I feel overwhelmed most of the time.  Only one doctor ever emailed me back and that was our GI.  He suggested that possibly, Spencer had Botulism but after reading about that, I knew he didn't have that.  It's a mystery what caused such a dramatic change in him for nearly three weeks…

He's back, almost.

Yesterday, for the first time in over two weeks, I saw a glimmer of my old Spencer coming back!  I still haven't heard from any doctor about what to do to help him.  I'm bugged about it.  I wonder if doctors really know what parents of sick children feel like?  Do they know how helpless and terrifying this can feel?  Do they know what it feels like to hear your child say, "Do something!  Help me!  I think I am dying!"  I wonder if they really care or if an email entitled "Help" is just a signal to move on to other things.  Maybe they have way more important things to do, sicker kids to care for and of course, they do have families and I get that but it still feels very isolating when there is NO ONE to turn to.  I could take him to our regular doctor but they have already told me that problems like this are way out of their league. Our Oncologist emailed back and said he was on vacation.  I totally respect that but I can't help but feel a twinge of rese…
I have been avoiding this blog not because I am too busy but because I have been overwhelmed with what has been happening.  Spencer continues to struggle.  Struggle in ways I have never seen him struggle before and it's been scary to watch. 

I am not even sure I can describe what is happening to him.  At times, it's like watching someone have a stroke or blowing up a balloon then letting it zip at a furious speed until deflated within seconds.  This is literally happening to Spencer.  One minute he seems okay, not great but okay and without warning, he is completely deflated, no energy whatsoever.  I don't mean he is just tired but can barely move his limbs, lift his head.  It can last a few hours.  Tuesday, it was scary.  So scary even Sam and Shelbie were in shock to watch him.  His eyes seem to glaze over and it's like he's gone, a switch of light flipped off. 

I have no idea what is happening.  I have emailed several of our doctors but have not received a rep…

Fearless?

Yesterday, the kids and I watched a documentary called "A Day in the Life".  It was pretty random and consisted of just a bunch of random people and how they spend one Saturday in July.  It was both intriguing and boring but on Thanksgiving when half the family is sick, what else is there to do right?

Anyways, there was some guy talking about how he has battled cancer with his wife twice and won.  He said, "Nothing scares me anymore.  I am fearless."  Fearless?  What would life be like if you were fearless?  Does it take a showdown with death at high noon with tumble weed blowing by your rugged boots one dusty Saturday in the middle of a desolate, ghostly town?

I don't know but I can't get that thought out of my head.  I have had my own showdown or two with the threats of death or at least crippling disease and I am not fearless.  Two days ago, a good friend and her husband were in a head-on collision on the highway. Thankfully, their 10 children were not t…

Now what..

Well, the doctor was in bright and early this morning.  He has done a great job with Spencer and I really appreciate all the time he has put in to finding answers. 

The good news is that Spencer's brain scan for tumors, lesions or abnormalities in the lining of the nerve sheathing all came back normal!  Whew! That leaves the problem with his palate, disappearing gag reflex and throat pain more than likely mitochondrial or possibly autoimmune but the steroids haven't helped at all so that's not as likely.  So, we are back to no treatment, no cure.  Though it hasn't been confirmed by the Neurologist, it follows the pattern of mito problems.

The stomach and vomiting issues are another perplexing issue altogether.  The doctor said what Spencer has is not Gastroenteritis or 'stomach flu'.  He said that when his immuno compromised patients have to take high doses of steroids, it overwhelms their system and causes "malignant vomiting" which is what Spencer …

The Beast of Chronic Illness

I wasn't quite expecting the whirlwind of crazy and insane we are caught up in.  I've been keeping an eye on Spencer's throat and palate and that alone has been a cause for worry. The prednisone has taken it's toll on him.  One thing I totally forgot about was the fact that prednisone can suppress the immune system drastically. 

Yesterday, Spencer started throwing up.  It went on every 30 min for nearly 9 hours.  Sometime in all that, he developed a really bad pain in his abdomen and a high fever.  We brought him in to the ER thinking maybe a little fluid and some IV anti nausea meds were in order.  Instead, we ended up with CT scans, chest xrays, morphine, lots of fluid because he was severely dehydrated and blood cultures.  This is not your typical gastroenteritis but what is it? 

Well, we are sort of dealing with two seperate beasts.  The throat/cranial nerve problem and the stomach issue.   Part of the stomach problem is that he had 7 slices of pizza covered with…

It's Official

We got the official letter from Make A Wish on Wednesday and Spencer has passed all the requirements to be granted a wish!  The best part was seeing a smile creep across his face as he opened and read the letter.  It's been a long while since I saw my boy smile, a real smile. 

Now comes the arduous task of deciding on a wish.  There is no shortage of ideas and suggestions but I know Spencer and he is a deep thinker and will put alot of thought into the process.  He has to choose his top three wishes and then Make a Wish decides which one to grant him.

Think about what you would wish for?  It's so hard!  I have no idea what I would wish for.  It will be interesting to see what he decides.   Whatever it is, I just want him to be happy and be able to enjoy it. 

The steroids are taking a toll on him and it's hard to watch.  We are on the downside now and I was hoping there would be a change in his symptoms and pain but unfortunately, there is no change.  Still pain, still no…

Prednisone Sucks!

I think I have uttered these words before but it's true, Prednisone sucks!  I think it's killing poor Spencer.  Not literally but the poor kid.  Sheesh!

Tonight his face was super flushed and his body temperature has dropped to only 95.6!  His face is getting swollen, his appetite is huge which is a problem!  A problem only because all the food I bought over three weeks ago on my last grocery store run was food that is to make things from scratch so there are no 'grab and go' things in house.  I felt so bad for him tonight, he ransacked the kitchen trying to find anything he could eat right away.  I offered him grilled cheese, pancakes and eggs, nachos, tacos, toast with peanut butter, ice cream, chocolate chip cookies you get the picture.  He couldn't wait for me to make something, and it was nearly 11pm.  He finally let me make him some toast which I slathered with butter and peanut butter!  I know he went to bed starving.

Let's see, what else.  He's dizz…

Life in a box

I have been sticking pretty close to my online support groups for both Mitochondrial disease and Shwachman Diamond.  It's not that they solve any problems for me but there is a comfort knowing that all the flood of feelings I experience from one moment to the next are normal. 

One mom today,  wrote a message to someone else in the mito group.  She verbalized so well what I feel all the time.  She talked about how she keeps her life in 'boxes'.  The boxes contain emotion too overwhelming to deal with. 

I keep my own life compartmentalized.  I think it's the only way to manage everything.  I guess the perfect example is my blogging.  Three separate blogs with completely different content.  In addition to all these blogs, I have two or three different journals with even more thoughts and feelings, different from anything read in my online world.  It may seem strange but it helps.  It keeps the chaos controlled. 

When it's time to deal with one part of my fractured …

And....

Well, not good news from the Ear, Nose, Throat doctor yesterday.  Not good at all.  Spencer is not getting a cold, or tonsilitis, nor does he have strep throat.  He has a neuropathy.  What is a neuropathy?  As far as my simple mind understands, it is dying of the nerves.  The nerve that the doctor thinks is being damaged is the cranial nerve.

The cranial nerve is responsible for things like the gag reflex.  So, the million dollar question...what is causing the nerve damage?  He said it is one of two things.  One, it could be that there is an autoimmune process taking place that is attacking the nerve.  Two, it could be that the defective mitochondria is killing the nerve.  Theory one can be treated.  Theory two can not. 

We are trying the treatment for autoimmune/viral infections of the nerve which is a super, rockstar size dose of prednisone.  I hate prednisone!  It makes my kids turn into mean, angry people who feel sicker than before they started it.  We don't have a choice s…

Can I just hit Delete?

If I delete my last post, take back all I said about things being so great...can I turn back time and the nonsense today will cease to exist?  Blech!

Shelbie woke up sick!  I guess it makes sense since we are a week and a half from infusion even though it feels like the last one was more than 6 months ago!  Stress has a way of making time drag!  Last night, my kids had friends over who only finished throwing up 24 hours ago, others who have been around all kinds of sick people at work.  No matter how many times I try to tell them stay away from sick people, it never works.

Then there's Spencer.  He's been complaining of a sore throat for a few days now.  I figured it was a little cold but when I look in his throat, there is absolutely no redness whatsoever, no sign of infection, he doesn't have a fever, achiness or any other symptom of a cold or otherwise. The pain is inside and stabbing and he feels pressure and fulness in his throat.  Then a new symptom has developed, …

I hate to say it...

BUT...things have been pretty quiet around here from a health standpoint.  I hate to say it because it seems as soon as you mention how great things are, they turn to not so great very quickly. 

Last week, Shelbie stayed pretty healthy, all things considered.  I feel like her body is finally accepting the plasma better and all the treatments are starting to pay off.  It kind of gives me a false hope that she is 'cured' but I know it's not real.  Well, it's real but it's not her body doing any work, just the medicine.

Spencer had a few glitches in his week.  He broke his toe playing soccer in gym class, had the pneumonia shot which irked him some and continued with his daily nausea routine but he managed pretty well.  He got a job over the weekend so that is great but means he will be gone everyday after school for a few hours and I worry that it will be too much for him but we will see how it goes.  He's really excited and I am too.

Sam scared me this week b…

Learned a few things

Yesterday, I learned a few things.  Spencer had to get a Pneumonia vaccine because his most recent immunology tests showed that he had little resistance, in fact hardly any at all, to the Pneumonia bacteria.  In my mind, I just thought, Oh well, we will have to be extra careful he doesn't get pneumonia.  He had it just a few months ago but still, has not built up a resistance. 

While sitting in Short Stay at the hospital yesterday waiting for what was suppose to be a simple vaccine, the nurse handed me some literature on the Pneumovax vaccine.  I did not know that the Pneumonia bacteria is actually responsible for causing ear infections, strep throat, meningitis and a host of other problems!  Spencer has always been plagued with strep bacterias, ear infections and has had meningitis which turned into encephalitis. 

In four weeks, we have to have labs drawn to see if his body has formed any titers to the vaccine.  If he hasn't then, the doctor said he will most likely have to…

Anniversary

It is hard to believe that one year ago this month, Shelbie got sick with ITP.  Like everything that happens to us, I thought, surely this isn't going to last forever.   Well, it hasn't lasted forever but it has been one long year that at times, felt like forever. 

I remember clearly that wintery, spring day, staring out the large window in her hospital room hoping  the answer would be written in the glaring snow covered roof below.  The doctor had just left, announcing that all the treatments we had tried were no longer an option and presented three new alternatives. All three had a suck factor to them. 

One was a pill that would surely scar her bone marrow leaving her unable to be eligible for a transplant.  The second option was a spleenectomy.  The spleen is a vital organ of immunity.  Losing that would make her forever susceptible to infection and the odds of curing ITP were very slim.  Our third option was chemotherapy.  The kind of chemotherapy they suggested using, t…

Not ready for this!

I guess this is part two to the heartbreaker post.  This young man that came into Shelbie's life this week is really taken with Shelbie.  They have gone out three times and have had a great time.  He is kind to her and respectful and that is refreshing cause Shelbie has never been treated that well by boys. 

Last night, she decided since he was getting more serious, it was time to let him know that she is not your average girl.  Well, he didn't take it all that well.  I didn't take it all that well, and Shelbie didn't take it all that well.  It just sucks that reality has to be faced. 

Any guy that falls in love with Shelbie or girls that love my boys for that matter, have to know they are falling in love with disease.  This stupid disease that changes every day.  No two days are ever the same!  They are signing up for a life of financial strife!  That's a lot to take on and overwhelming to think about.  It's hard enough these days for a girl to find just a r…

A Heart Breaker

Some 12 years or so ago, I knew in my heart I needed to be prepared for a lifetime of health problems.  I did what I thought would prepare us for the ups and downs that Shwachman Diamond Syndrome would surely offer us.  I tried to stay vigilant with their medications, quarterly blood draws, semi annual appointments with specialists and nip whatever came as quickly as possible.  I kept the house and their hands as clean as possible, free from microscopic havoc.  I planned fun things, lasting memories.  I read books and articles, health journals and other mother's journals.  Their well being and happiness was my only concern.  It still is.

I was excited that Shelbie had been asked on a date last night.  I was excited that for one night, she would experience life as a normal 19 year old girl, bon fires and smores with a nice young man to share it with.   InI had visions of helping her get ready and sharing in the excitement then waiting anxiously for him to come to the door. 

Well, i…

Because I know

Would you want the ability to see into your future?  Would you want to be able to see the future of your children?  See the problems coming, the opportunities at each fork in the road?  If you had that knowledge, how would tomorrow look as opposed to yesterday?  What would change?

I have a little bit of knowledge, maybe more so than the average guy on the street as to the direction my life is going or at least the direction of my kids.   It's not the whole picture by any means but its enough information that it changes things.   It changes how I view the world, the choices I make.  Each decision is weighed heavily against my priorities and those priorities are set according to my prize possession- my kids. 

Because I know a little bit about how the health of my kids is going to deteriorate, I do everything in my power to make the most of each day.  I like to think I have more control than I do.  I like to think I can keep them in a bubble to preserve their health, keep them germ…

The Things We Do...

To be normal! 

I hate being abnormal.  I'm sure none of us really love being set apart from the mainstream of life.  We all want to fit in, hasn't it always been this way?  From the moment we set foot in kindergarten, we realize what it takes to be a part of the greater whole.  When we deviate, we quickly learn how to take the bullying or fall back into line and run with the crowd.

On the weekend, I had to make a trip to a neighboring town to the home of a family I know is struggling. Their struggles right now are pretty devastating.  Their family life is in a shambles but they don't know that I know.  Still, when I came to their front door, the facade of happiness was oozing from the hinges.  A smile with hollow eyes filled their faces. I left feeling very curious, wondering what is so hard about being honest. 

From Shelbie's seat in the car, she noticed the same uncomfortable emptiness and said, "Why are they trying so hard to look like everythings okay?"…

Deeper feelings

This week on the mitochondrial Facebook page which I am a groupie of, a member posted a link to an article written by a mom whose only child has a fatal genetic disease called Tay Sachs.  It is a beautifully written and touching memoir of motherhood and chronic illness.  If you want to read it, grab yourself a tissue or two and read it here.   I've read it three or four times and each time the connection I feel with this mother, Emily Rapp is amazing.  She verbalizes what I so often feel.

I sort of feel guilty even trying to compare myself to her.  I have had much more than 3 years with my kids and will probably have many more but lots of the feelings I have are an echo of hers.  I too have learned many lessons over the years, some the hard way.  I have learned how grief and sadness can change you into someone who loves deeper and cares more.  It's changed the way I see my children and myself.  We don't wait for tomorrow, we live for today.

Everyday brings with it a new set…

IVIG

Shelbie had her IVIG infusion on Thursday.  I am so happy to report it was by far the best infusion to date!!  I never thought I would see that.  We finally had a nurse that actually took into account my opinion and listened. 

I overheard the hospital pharmacist tell the nurse not to worry about titering the dose because she has had it so much.  He suggested she run it through in one hour.  That is lightening speed!!

When the nurse came in, I told her I didn't agree with the pharmacist and really wanted it to be run slow.  We had scheduled out the entire day and it's not like they had anywhere else to be for 12 hours so we ran it over 6.5 hours.  The nurse also suggested a different pre med schedule and so we went with that as well. 

For the first time ever, Shelbie didn't have any bad reactions during the infusion.  She never ran a fever like in the past and the nausea never really caused her any discomfort.   Tonight even, the side effects are not nearly as bad as they…

Another mixed bag

This week has been crammed with doctor appointments and hospital visits.  All things considered, every visit went well.  Hmmmm, where to start.   I guess with Boise. 

We arrived in Boise on Tuesday night.  We ate and then headed to our cheap hotel.  I was so tired.  I love staying in Hotels because it's one of the few times I know my kids have no reason to leave.  They can't hang out with friends or go on any outings so while they are chillin on the beds watching tv, I went to bed.  It was only 9:30 and I was so happy to have the chance to get more than 4 hours of sleep.  As my luck goes, I could not sleep to save my life.  I was so bummed when I 'woke' up more tired than when I went to bed. 

Anyways, I digress.  Our GI, Dr. Thompson is one of my favorite doctors.  He is the guy who started it all, made the final diagnosis on my kids almost 12 years ago.  He always spends so much time with the kids and gives them all sorts of good information they can use.  For inst…

Status Quo

This week, Shelbie continues to fight cellulitis, the skin infection on her stomach.  The antibiotics have helped and definitely kept her out of the hospital but as always, it's slow healing.  Another weird development that cropped up today was petechia! 

I'm not entirely sure what that means.  Could be nothing.  In the meantime, she is coming down with a cold this week and her eye infection is back again. 

For now, I'm not going to worry about this.  We are getting ready for a trip to St. Lukes this week.  The day after we get back, Shelbie will be at the hospital here for her IVIG infusion. 

My hope this week is that our GI doc in Boise will be able to find something to give relief to the boys and their recurrent and chronic nausea.  It is getting old! 



Calm before the storm

I should know by now that it's better to just let the peaceful moments roll on by without me 'noticing' because whenever I mention how happy I am with the little break from stress, we get slammed!  Isn't that a law of Murphy or Confucious or something. 

About a bazillion things happened today to test my patience and my faith.  Last week, Shelbie developed this little pin dot of a pimple or something on her stomach.  I didn't think a thing of it.  Over the weekend, it got bigger and bigger and now covers a large portion of her stomach.  I ran her into the doctor and it was on the verge of cellulitis. 

What is cellulitis you ask?  It is not the dimply, dents women tend to get on their legs.  It's an infection.  A serious bacterial infection of the skin.  Without treatment, it can spread quickly to the blood.  In an immune compromised person like Shelbie, it is very, very serious. 

She started a high dose of oral antibiotics and topical antibiotics but if ther…

A moment of peace

It is amazing the night and day difference that IVIG makes for Shelbie.  Once she gets passed the awful side effects, she does much better.  Of course she is still really tired and feels run down but the colds and viruses are essentially gone. 

Unfortunately, it only stays in her system for about 21 days.  We are coming up on the 21 days so it will be interesting to see what she comes down with next.  Her B-Cells have still not returned which to me is neither good nor bad. 

Here's why.  As soon has her B Cells return that signals her immune system to rev up.  That revved up immune system begins destroying her platelets and we start the whole nightmare of Immune Thrombocytopenia Purpura all over again.  Our doctors have already made it clear that they will not approve any other treatment besides the chemo agent Rituxan so she gets signed up for another two months of that.  Her immune system will die, the platelets will come back and so will all the viruses and bacterias.  IVIG w…

My Holland

A little while ago, I posted one of my favorite stories called, Welcome To Holland.  If you missed it, go here to read it.  I think about 'Holland' nearly every day.   Yesterday as I waited in the car pool lane, I thought about all the things I actually like about My Holland. I'll admit, at first it was really hard to think about what I like about all this, in fact even the word like used in reference to our life with Shwachmans and all the other problems seems to be an oxymoron.

I dug around in my distant thoughts and came up with a short list of things I like about Holland.
I really like that since I lost my job, I have been able to be home with my kids again and take care of them and nurture them like I was meant to do.  I can't do it all, I don't want to do it all, I just want to be a mom. My vocabulary has grown.  I no longer stutter when I say Immune Thrombocytopenia Purpura and I can spell it too!I have become freakishly interested in the status of my kids&#…

The Path

"When you are on the path you will know it, when you are not on it, you will know it."  Tao of Lao Tze.  I have no idea who this guy is but I like what he says.  He goes on to say, "The process of living life allows you to feel as if you have found the path."

I like these thoughts.  I know that right now in this period of my life, I am not on the Path. Well, I am on A path but not the path I want to be on.  I'm on the 'crazy' path.   Incidently, did you know the word Tao means 'path'?  I believe we find our path because of our life situations.  Some of life's experiences are energizing, moving us effortlessly along, sometimes we find ourselves half dragging down the path. 

Dragging myself down some path is what feels familiar these days.  I have allowed myself to be consumed with the hard things this summer has dished out.  I realize that while I may not be depressed in the traditional sense of the word, I am definitely distracted by ever…

It finally hit me

While I sat by Shelbie's bedside on Thursday, once she fell asleep from the loading dose of pain meds they gave her to control the side effects, I did some thinking. Deep thinking.

When I was engaged, I read lots of books on marriage.  I wanted to be well prepared for what I was committing to.  When I got pregnant, I bought the bible for pregant women, What to expect when you're expecting.   I'm sure if you have kids, you know the book too.  When the first baby was born I bought the sequel, What to expect the first year.  I think I highlighted every page.  I read that book faithfully along with plenty of other companion books.  When they got a little older, I read books on teaching kids value, teaching kids to work, teaching kid the birds and the bees.  When my first experience with the misguided, brain malfunction teenage years began, I read books on raising teenagers.  When those tactics failed, I read books on the biggest mistakes parents make.  When diseases started c…