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Showing posts from 2014

Settling in

I finally approached the Dyskeratosis Congenita support group late last night. I've been living in denial since May.

 I inquired about heart defects in DC.  I had some wonderful moms private message me that in fact, their sons heart look just like my son's.  Not only that, the pulmonary AVM is also something common.  One mom said, that that issue is going to be the thorn in our side.  It can not be fixed.

This is what the further testing will be looking at, to see if Sam has a pulmonary lesion or AVM.

Things just started feeling really complicated and overwhelming.

I didn't sleep at all last night.  I went to bed at 2am and at 3:15, I was awakened by Sam who was feeling pretty sick.  I drugged him up because there is nothing worse than vomiting!  Thank goodness we had some Zofran around.  At 4 am, he admitted to eating an obscene amount of Fiery Hot Cheetoes at the little party he hosted at our house last night.

Well...that'll do it when you have a pancreas that isn&…


Another unbelievable medical moment for us.

I called back to the pulmonary lab this morning and guess what?  Different people today than yesterday so I just casually said, "I just need to pick up copy of my son's cardiology report.  Could I have that by noon?"

It was that easy.

They didn't have it ready when I got there and when she realized that the doctor hadn't even signed his report yet, she hesitated.  I just prayed and prayed she was too busy to care and turns out she was.

I headed down through the corridor a bit, and read the report.  I didn't want to read it when I got back to the car because the kids were waiting for me.  I needed to buffer my feelings for just a minute.  On the way down there, I felt so terribly ill.  I don't remember a time I was so anxious I literally felt like I was going to be sick.

 I stood in a corner and couldn't even believe what I was reading.

     Aortic Insufficiency
     Mitral regurgitation
     Tricuspid regur…

Patience is a virtue

Patience is a virtue but only to a point.  I try, I really try to be patient but it's the kind of energy you can only keep up for so long and then snap!

Today proved to be that moment where my threshold for patience was met.

Sam's test results are sitting the desk of not one, but two doctors; the Cardiologist and the Pulmonologist.  The Pulmonologist has decided to take another week off from work without anyone covering for him so, we won't get results from him til sometime next week.  The Cardiologist who read the tests, won't tell me the results because technically, Sam isn't his patient and he felt the doctor who ordered the test should discuss the options, not him.  I explained the whole situation to several nurses today but they too, were lacking patience and understanding.

I called back to the lab and asked if they would fax me the results.  Nope.  Not going to happen through that avenue either.

So, I got this great idea to call our family …

Everyone will get use to it..

I've been doing some research in the areas of Lyme Disease and Lupus for a friend.  In all of my research, I came across and article in the New Yorker Magazine called, "What's wrong with me?"  It's an article written by a lady who has been plagued with autoimmune diseases.  She's pretty candid about her life and her feelings.  I could appreciate and connect with everything she said.

In one paragraph, she quotes a nineteenth century French writer, Alphonse Daudet in regards to his own suffering, "Pain is always new to the sufferer but loses its originality to those around you." and "Everyone will get use to it but me."

Those two statements really struck a chord with me, especially this week.

I have been walking around in a fog, probably due to lack of sleep, stress, worry and poor nutrition.  I have seen it affect me more and more.  Today, I had to go the urgent care because I've been having spasms in my back and neck since Thursday a…


Well, we made it through Christmas without a hospital trip!  Hooray!

Tuesday, Sam was at one facility getting his tests done and Shelbie was at another about an hour and half away.  So, it was a fun day!

The radiologist doing Sam's echocardiogram and bubble echo was so boring and borderline cranky.  Most radiologists will talk about what they are doing, what you are looking at on the screen, point out anatomy and even say if things 'looked' good.  I know they aren't doctors but surely, they do this day and day out, they have to know what they are looking at so they can flag it, measure it, test it, whatever.  I even asked him if he could tell us if he saw a hole and he said, "Not unless you are Bill Gates."

Whatever.  Lame.

When we left, he spouted something off that was so cryptic, it would take all the intelligence of this country to figure out what it meant!  Not even kidding.  We stood out in the hall analyzing it for several minutes.  If you aren't …

Christmas Day

Christmas day actually felt pretty normal!  No one was in pain, no one was sick, no one was scared, or at least they didn't show it, and Sam didn't lose his vision!  So, all in all it was a great blessing.

We woke up to a foot of snow which was beautiful and made for a lot of shoveling which, call me crazy, I really like to do! Except I wrecked my now I look like a dork in a brace.

 Sam got the coat he's been wanting for months and months!  I actually bought it clear back in October when we were in Seattle at the hospital.

 Shelbie got a sign for her bedroom.  It says, 'Don't let yesterday, use up too much of today."

Spencer...Shelbie and Sam figured out how to get all the technology talking to each other so we could see him on the big screen!  So much better than my phone!

Spencer Skyped with us in the afternoon and it was so great to see him.  He has lost a little more weight which I didn't love to see but he is doing fine.  I couldn't wai…

So, this is Christmas

Merry Christmas!

I've always loved the song...And so this is Christmas, and what have you done? Another year over, a new one just begun.

It's a great time to reflect on what you have done all year.  Have you been naughty? Or nice?

Yesterday, Christmas Eve, I didn't exactly reflect on what I had done all year but more about what I was going to do to save the Christmas spirit.

I had to work today.  I started at 6:30 am with a couple of hours of drafting, then headed out to clean two houses and an office building.  Shelbie had a big photo shoot booked for a large family and Sam went with her to help with props and such. They were gone most of the afternoon.

When I finished my cleaning, I went to find May so that I could give her a bag of gifts.  She was at her apartment and when I handed her the bag, she said, "Oh...not fair!  I didn't get you anything!"

"Don't worry!  I wasn't expecting a gift in return.  Really.  I just appreciate your friendship…

I don't even know...

What a roller coaster of what nots!

Last night, we ended up in the ER with Shelbie.  Not only was she having her IVIG reaction but she developed the biggest welts and hives all over. I don't have a clue where those came from or why.  We got home at 2am.

Today, Sam was the happiest he has been in months.  I was so grateful because I had to work and after getting only 3 hours of sleep, I just didn't have much energy to give him.

Missionary Monday was today.  We got a letter from Spencer and it was so discouraging.  It was like day and night from his past letters.  He seemed really upset.  I had told him, gently, about Sam because I think he would want the opportunity to pray for his brother.  He said that there are just so many problems with him, the whole mission and our family.  I know the mission has been through some crazy hard times but I thought he was taking it all in stride.  I just want to talk to him now.  I don't have one ounce of patience to wait until Thursda…

A Broken Christmas

"I just don't have the Christmas spirit." Shelbie said today. "I'm so worn out and tired."

I have worried the past few days, that all these setbacks are going to chase away the Christmas Spirit.

Every year, I work so hard to keep December calm and peaceful.  I have been lucky enough to master that the past several years.  I don't rush around and feel crazy with shopping, parties, baking...all to collapse on Christmas Eve and have it all lay in a heap 12 hours later.

But...I didn't really plan on this chasing away what I work so hard to do.

Maybe all is not lost. We may not be doing the traditional things to get and keep that Christmasy spirit but we are certainly focused on Christ and isn't that what it's all about?

There is nothing more we can do, than pray for resolve.  To trust in a Heavenly Father who surely gives good gifts to His children, is the most Christmasy thing that can be done.  To reflect on the life of Christ, His birth, His…

Cracked and Broken

I've been waiting for this moment since May.

I finally broke into the high wall that Sam has been so diligently building all year since he heard the news of his disease.  It was just a crack but enough of a crack to release some pressure...anger and very raw fear!

Sam came up to the hospital after school.  We walked down to the cafeteria and ran into some friends.  Danny works at the hospital as a Respiratory Therapist.  They asked Sam how he was doing and with a grin that spread across his face and eyes as big as the moon, said, " Great!"

"Are you lying?" Lori asked

With a bigger grin, Sam shook his head YES.

We got into it with them because I really wanted his opinion since he does Bubble Echo Studies everyday.  I explained the symptoms and he said something both scary but interesting.

He reminded me that a lot of kids end up dead before they know they have Atrial Septal Defect.  It's the active kids who drop on the football field, or soccer field or pla…

And Again...

It's been one crazy, messed up week!  Today was just about trying to survive.

I slept only 2.5 hours last night and had a full day of work today, in fact, I just got home!

So, life is interesting.

Well, enough small talk...where to start?

First off, it's been interesting to watch Shelbie and Sam today.  Shelbie has been very protective of Sam.  At our appointment yesterday, as soon as the doctor told us Sam was having mini strokes, Shelbie started crying.  The doctor said, "Why are you boobing?" It sounded kind of harsh at first but it really wasn't.  He was very gentle.  Shelbie told him that is was just too hard to hear that something is wrong with her brother.

Today, twice while they were out, people asked Sam about his heart.  Shelbie jumped in and said that nothing was wrong.  While that isn't entirely true, at all, she did it for Sam.  He has been in a very sad place for about the past 6 months.  Since getting pneumonia, it's gotten even worse.  …


I have really made a concerted effort to be strong.  I have really tried to take everything that happens to us in stride but today, I sort of fell off the proverbial wagon.

Today, we made our pilgrimage down to get Sam's final report from the Pulmonologist.  I was expecting a good report because why would I expect a bad one?  Shelbie was also scheduled to see the doc because she has decided to stop breathing several times a month and it's terrifying and since she has a history of Asthma, I felt it was a good idea to see this guy before he retires next Spring.  He's really great, and after watching him today, feel even more blessed that we got in contact with him again after 15 years!

Anyways, I was so prepared for a good report that we were carrying on like crazies in the waiting room.  It started when a man walked in and made some joke about all three of us sitting there on our phones.  I was sending work emails and Sam and Shelbie were playing games.  We all put our phon…

My Favorite Doctor

This year has not been our year for doctors up until now!  We have had a rough go of it with our team of docs.  They are burnt out on us which is so unfortunate because we really need their help.

Just last night, I read an article a doctor friend posted about the burn out rate of Doctors and what a hassle it is being a doctor.  I agree, that like all professions, there is a degree of hassle that comes with the job.  But, I still believe that you can either get sucked  into the fray and complain and get burnt out, or you can remember why you chose the profession in the first place and just worry about your patients and let the other things take care of themselves.  They will, they always do.

Back in September, I had the prompting to write a letter to one of our early doctors.  He was an amazing Doctor.  I had never had one quite like him before and have never experienced that since.  His name was Dr. Rammell.  He is amazing, just so happens he isn't our doctor anymore.  So, I wrot…

It's just a game

Tomorrow is the deadline for getting my health insurance on the exchange.

I've been trying to get this decided for the past 4 days, but my log in information isn't working.  I get an error message that says 'Authentication Failed'.  I finally called their help line.  After being on 'hold' for a total of 8.5 hours, longer if you count the time I had to wait overnight since they closed before it was my turn in the wait line, it was a lot longer.

I've come to the conclusion that dealing with the government is just a big game of Hide and Go Seek.  If you approach them with a fun and playful attitude, it really helps your mental stability.  Instead of wanting to go postal on them, you learn to just laugh.

For instance...The first person I talked to about the log in problem said, "Well, our website is having problems.  We will get it fixed and then everything will be fine."  Oh...Okay, the website is down!  of course it is!  Of course it wouldn't…


I'm sure you've heard me talk about my friend who has been homeless for over 25 years!

She has been without a car for 9 months now and back in town for about 3 months.  I have so enjoyed the past few weeks being able to spend more time with her.  Since she doesn't have a car, it's much easier to keep track of her and take care of her.

The double wide trailer was her home for a bit but last week, she was able to get an apartment that is subsidized by the government.  It's an okay place.  I've been going to visit her several times a week just to make sure she is doing okay and doesn't need anything.  On the weekends, I spend most the day Saturday with her.

Last weekend, we spent a couple of hours trying to find her a car.  I had mixed feelings about doing this.  For one thing, she doesn't have a valid driver's license and she is somewhat of a hazard on the road due to her hoarding disorder.  She has things piled to the roof that she can't see ou…

Christmas Carols that aren't

I've been doing a lot of Christmas music listening.  I spend so much time at the computer, I need something to keep my groove going so I turn on Pandora.  This time of year, I'm obviously hitting up the Christmas stations.  Every year, I hear the same old songs that are trying to pass themselves off as Christmas tunes.  Just because a song mentions snow, or Christmas doesn't mean it's a Christmas carol.  Here are my top 5 songs that shouldn't be played at Christmas.

Frozen...Anything from Frozen.  The movie has nothing to do with Christmas.  Just because they sing about building a snowman and fractals of whatever, doesn't mean we should add that to the repertoire.  Unless you are my favorite little 3 year old, I don't want to hear that song anymore.

It's The Most Wonderful Time of The Year-  Okay, this song isn't bad but what's up with the line, 'Scary Ghost Stories'?  And who roasts marshmallows in December, on Christmas? I would like to …

Kept by God

In keeping with our tradition of being weird and was another very weird day.

I received an email this morning from the Mission Office where Spencer is serving and someone broke in over the weekend and stole and vandalized and opened the majority of Christmas gifts that had been sent by families of the Sisters and Elders serving.  They assume the robbers were looking for money, gift cards and valuable items.  They asked each family to call and report what they had sent and the color of wrapping paper it was in.

When I saw that I cried and cried and cried.  I worked so hard on a book I made for him.  I'm not really sure exactly why I was so upset.  I'm not the type to get attached to anything, especially stuff you can buy in a store.  And, it's not like I sent him a nice gift like a GoPro or anything like that.  I think I have just been so tired this year and it's kind of been a series of unfortunate events lately, I was just struck with feelings of overwhe…

We need a little Christmas

Tonight, starting my 6th job for the day, I decided to turn on Pandora, to the Pentatonix Holiday station, ya know, get a little Christmas  cheer going despite this hard kind of week.

I listened to the usual Christmas line up; I'll be home for Christmas, Mary's Lullaby, The first noel.  There were some contemporary tunes mixed in too.  Each note gently dropped a little memory of past Christmas experiences into the front of my mind.  I remembered all the ways we have been blessed.

Yesterday, while sitting at the hospital with Sam, the Wasband and I were discussing the insurance problem.  Shelbie and Sam were both there.  At one point, the conversation got a little emotional because it's just so overwhelming. It's big!  So many things are just big.  There aren't a lot of opportunities to talk with him face to face about our situation so this seemed as good as any.

Neither of us realized the impact this would have on our kids listening.  Eventually, Shelbie started c…

Dollars will fix your problem

Yesterday, I had a government worker ask me if I could make $10,000 before the end of the year.  Of course, how hard can that be?  Why haven't I thought of that before now?  Sure, I'm not doing anything between the hours of midnight and 5 am but lounging around, it would be a perfect time to get a job.  Another job. One of many jobs.

I think that's a perfectly great idea because you can never tell your kids too much, "I can't, I have to work."  They love hearing those words.  It makes them feel so special and important, and cared for.

Basically, this notion of making more money, came after a lengthy conversation with one of the chimps up the chain of command at Health and Welfare.  They should really change the name of that company to  Planning Your Demise.

I knew when the Government said, "If you like your plan, you can keep your plan." it was just blowing smoke.  I knew they didn't really mean it.  It's like telling the clerk at Maverick,…

Bone Marrow Biopsy Results

Bone Marrow Biopsy reports are in...I had to hunt them down because our doctor still hasn't called to tell me the results.  I really don't have the energy to deal with him.  He is apparently really busy and we aren't a big priority or something, so whatever.  I don't care anymore.

The report was a mixed bag really.

His cellularity is stable from last year, which means about the same amount of his marrow is functioning as last year so no loss there which is great.

They stated that in light of his condition, it appears that aplasia or aplastic anemia has begun.

There are no increases in Blasts, which are the early signs of leukemia

He continues to show signs of Neutropenia but now, another cell in the white blood cells starts to bite the dust.  That must be why he has had an increase in viruses and infections the past few months.

Finally, he had Megakaryocytes show up with unusual morphology. That can be a marker for Myelodysplasia.   They are coming o…


Shouldn't pneumonia start getting better after three days of IV antibiotics?  One would think.

I guess, considering his poorly functioning marrow and the rock bottom blood counts, it's going to take a little longer than the average person but today he is worse.  Much worse!

Makes me sad.  I made a joke on FB that I was waiting on him hand and foot but then said, 'Not really, I'm not that compassionate."  The truth is, I am trying to wait on him hand and foot but he suggests I find a hobby that doesn't involve taking care of him!

I hate to see him so uncomfortable so any little thing I can do, I want to do.

He is in more pain.  His cough isn't productive anymore, just tight and dry.  He still has a fever off and on.  His heart rate is still elevated as well as his blood pressure.  He has a lot of GI distress already from the antibiotics and I fear the C-diff has already started.  I can't be sure but I think.  I hope I am pleasantly surprised and we c…

The Story of Sam

Sam has pneumonia.

Sam said last Thursday, "Mom, I don't feel good.  I need to go to the hospital, I have pneumonia."
Mother said, "No, Sam, you do not have pneumonia, you have a bad cold like me.  Just try to enjoy Thanksgiving with your dad."

Sam said last Friday, "Mom, I don't feel good.  I need to go to the hospital, I have pneumonia."
Mother said, "No Sam, it's just a sore throat and congestion, not pneumonia.  Go have fun at the hot springs.  The mineral water will do you some good."

Sam said, last Saturday, "Mom, I don't feel good.  I need to go to the hospital, I have pneumonia."
Mother said, "No Sam, I'm sure you don't have pneumonia, maybe bronchitis, not pneumonia.  If you aren't better by Monday, we will take you to the doctor."  So, he laid there, quarantined by himself while everyone else went out for the day to have fun.

Sam said, last Sunday...nothing.  He just laid there, quaranti…