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Showing posts from November, 2011
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…


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 …


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…