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Showing posts from December, 2011

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.


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.
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…