Skip to main content

Posts

Showing posts from June, 2011

It's better to look good...

I've always joked with people that 'It's better to look good than to feel good!'  Well, there is probably some truth to that but looking good when you feel lousy may not always be the best plan of attack.  Why?  Because it confuses people.

The Immunologist we saw this week has really known the kids on paper for the last year.  She has been involved in many a conference calls with Dr. Shimamura to discuss a variety of things going on with the kids.  When she finally met the kids, she was taken aback.

"You guys look awesome!  I am amazed because reading about you on paper, I was expecting a pretty sickly looking bunch of kids.  You are much sicker than you look that's for sure!"

This isn't the first time I have heard this.  We tend to always show up with bright, smiling faces. I remember a few months ago, as we left the Oncologist's office with a platelet count of 2, we were laughing so hard over a dumb joke I made and the receptionists said, "…

Immunology

Wow, what a way to end our 10 day tour in Hell!  Okay, perhaps I'm exaggerating slightly but it's been a tough week or so.  Many, many mixed emotions, it will take awhile to process it all out in my mind and come to a place of peace and normal again.

Today brought so much frustration!!!  We knew the chemo Shelbie just finished came with some risks.  That being said, when the chemo was done, no one bothered to do any further testing to see what the results of the chemo were so we have assumed that it fixed the ITP and we avoided the nasty risks. 

Well....sorely mistaken!  The chemo did exactly what they suspected it would, it destroyed her B-cells and Lymphocytes.  Lymphocytes are part of the White cells that fight the mean and nasty infections.  Shelbie's tests came back 'ND', not detectable.  None, nada, no lymphocytes and b cells.  Geeeshhh!  So, she starts some strong antibiotics which she will have to take daily for the next 3-6 months or more, maybe the rest …

A new way

I guess I am starting to see things in a new way...We did end up at the Pacific Science Center this afternoon but Shelbie was really tired and all the walking we did was hard on her.  Spencer had his stomach pain and nausea episodes so he had to take frequent breaks so he could sit down until the waves of nausea passed. There is a really cool Butterfly House there and we went in to see that but Samuel just about melted into the concrete.  The temperature inside the house was 85 degrees but with alot of humidity, just too much for Sam to take.

I realized after the afternoon dragged on, that this is our typical outing, someone always needs a break because of some random weakness, nausea or other illness.  In the past, I've dismissed it but now with the new mito player, I have a little more patience.   I wish I knew exactly what they were feeling.  I know it's frustrating for them.  I wish I could make a difference for them.  It will be interesting to see how the mito cocktail wi…

Sick

How ironic...Shelbie is sick.  She hasn't been feeling great the last few days but through the night, things got much worse for her.  She had a few nose bleeds which are perplexing but now has the congestion, sore throat, coughing and everything else that comes with a bad cold.  I thought it might be allergies.  The boys and I typically deal with allergies, not Shelbie and ours are pretty bad.  I have hoped that was all that was up with Shelbie so I kept feeding her allergy medicine but she never feels better like the rest of us do when we take it. 

Today was going to be our 'hospital free' day and for the most part, it will be but I will need to schlep back over there to pick up her super strong dose of antibiotics then hit up Walgreens for a supply of cold medications so she can be a little more comfortable.  The problem is, you can't just run in and run out of the hospital like we do back home.  There's a big parking garage to manuveur and anyone who enters the…

Sunday

Finally, Sunday!  Shelbie had to be at the hospital first thing this morning and as soon as we finished, we drove around to find a chapel so we could attend some meetings.  Though it wasn't quite like being home, it was nice to be spiritually fed. 

The talks were all about faith and hope, two topics that were timely for me.  They didn't offer any new information but great reminders and gave me just what I needed to get through the next few days.  We have a few more stressful days coming up.  I'm sure the immunologist on Tuesday will have a hay day with us. 

We did some walking around today after church and that gave me an interesting perspective.  We saw so many lost and lonely people, homeless people and many who were numb with drugs and alcohol.  After everything we have been through this week and all the disappointing and uncertain news, I felt like we had a more solid, sure foundation in life than just about anyone else we saw today.  No matter how sick the kids get,…

Making Plans

Today, the kids want to try to get out and do something.  It is our one of two days we have as a break from the hospital.  Shelbie will be back in tomorrow for another infusion. 

Spencer got his paycheck just before we left from the construction job he worked at so he wants to use it to buy his 'back to school' clothes.  There are some great stores here that we don't have back home and they are dirt cheap so it will be a good opportunity for him to do that. 

I am hoping the kids will have more energy and less pain today.  Last night after we ate dinner with our friends, my kids went up to watch a movie with my friends' two toddlers in their 'movie' room and my kids fell asleep!  On the way back to the hotel, they slept. 

Later this afternoon, we are taking the ferry over to Bremmerton where my friend from college lives with her family.  It's always fun to catch up with her.  I am glad we will be anywhere but at the hospital today. 

Infusions

Shelbie did end up starting infusions today and they went well.  She has an IV that will stay in until next week and I will just have to flush it every 8 hours.  Tomorrow we have a day off and then she will be back at the hospital for more infusions. 

We had a really nice time visiting with our friends who made us a really nice dinner tonight.  They grilled salmon, burgers, veggie kabobs and had some yummy salad and watermelon.  All the fresh food tasted so good. 

It's not very often we get the opportunity to make connections like this.  As we waited in the Hemotology waiting room this morning, we met another family who have a 16 year old son with SDS.  I was so shocked that in the whole waiting room that was quite full, she recognized me out of the crowd and came right over to say hi.  Her son had just finished his biopsy.

I am so tired so we are calling it a night.  It's kind of good that I am so tired because I have just had to let all the worry and concern from the last…

Recovery and other stuff

The kids have done better post procedure this time than any time ever!  I was really surprised.  They slept until just after 6pm last night and actually felt like getting up to walk.  There is a mall close by our hotel so we did some very slow walking through there for an hour and that was good for a change of scenery. 

I'm not sure yet how the day will unfold.  It was suppose to be a free day but they want Shelbie back at the hospital to have a series of infusions and those will start today.  These are infusions we have never done before so I have no idea what to expect. 

The kids have been really easy going on this trip.  They are content just chilling and aren't complaining that we can't do all the 'fun' things that Seattle has to offer.  When it isn't convenient to come back to our hotel to eat, they order less expensive meals on the menu, share entrees, and just get small things to hold them over until we get back to the room and then we make Easy Mac or…

Another day...done

Biopsies are done, we are back at the hotel and everyone is sleeping...thank goodness for pain meds that make everyone drowsy.  Even I took a 2 hour nap but I still feel I haven't slept in about 40 years.  I forced myself to wake up so that I will be able to sleep some tonight. 

Yesterday was brought to us by the letter 'D'; Disappointment, Discouragement and Dismay and today was brought to us by the letter "S'; Stupid, Scattered, Stumped and Stirred up.  Ugh!  After a 50 minute commute to the hospital that is only 10 miles away from our hotel, we were still early for our check in time but everyone else there was behind so we got a late start getting IV's started and all the prep done.  Our Doctor was on time but had to wait for everyone else to pull it together and everyone else was clearly frazzled with our presence which is always annoying to me. What's the difference of three patients from one family or three patients from three seperate families?  Th…

Bone Marrow Biopsy Day

This morning, there are alot of butterflies, an overabundance of anxiety, and enough quivering and shaking to set off the nearest Richter Scale...oh but the kids are doing fine, they are still sleeping... ;-)  Just kidding...well, not really, we're all nervous.  It's a big day.  Lots to talk about and I will be white knuckled and on edge until I see the last one of my kids being wheeled out from the biopsy, begin to wake up from the anesthesia, and the doctor says, "They did well and everything went fine!" then, I will breathe. 

I am really looking forward to the couple of hours we will have to spend with Dr. Shimamura before the procedures, she brings a calming feeling into our muddled world.  The kids are scared but their fear comes out in nervous laughter and teasing each other.  I look at them while they are sleeping and I am overwhelmed at the strength they have to carry such big burdens and live through these trials with such grace and humility.  They have sho…

The verdict is in

Well, it has been an emotional day and a long day.  We spent hours with our new Mito/Neurological doctor Dr. Saneto.  I have never met such an amazing doctor.  He had every single quality I love in a doctor.  He was super friendly, had a great sense of humor and was patient and answered every single one of my questions.  He used a lot of analogies to help the kids understand what all this mito stuff is about along with pictures on a big white board.  The kids were very attentive and could grasp what he was saying...at first anyways...after several hours, their focus had waned.

There is no question in his mind that my kids have mitochondrial disease in addition to Shwachman Diamond Syndrome.  This explains Spencer's muscle problems that he has been plagued with, the fainting spells, extreme fatigue, his gallbladder failure last fall and strange things dating back to the first two weeks of his life on earth including his seizures, and his underdeveloped larynx.  It explains why She…

Mito/Neurology Day

Have you ever been awakened by a team of butterflies pitching your stomach from side to side and using your lungs as bases and your heart as home plate?  Really? You haven't?  That's what I woke up to at 4 this morning and they still aren't even to the second inning!

I was up until 2am just trying to get my homework done that Dr. Shimamura gave me to do yesterday.  I still have a little more which I will finish up this morning. 

I lay here wondering how in the world I ended up at this point in my life.  All I wanted was a quiet, little life in the country, a picket fence, laundry drying on the line, floating through the gentle breeze, my husband and I, his arm around me, sipping lemonade on the covered porch watching the kids run playfully through the clover. (I don't know where that clover came from...it sounded idyllic, whatever, you get the picture.) 

You'll notice that mitochondrial, neurological and bone marrow failure problems were not mentioned in my littl…

ALL ABOARD???

Consider yourself blessed that you missed this train...The CrAzY TrAIn!!!  It hasn't even been 24 hours and I want off!  What a day! 

I have always hated rollercoasters in fact, I remember my first rollercoaster ride.  It was at Disneyland, I was probably around 9 or 10 years old and I was sharing a cart with my dad.  Seared in the cells of my body is that slow, trudging start of the rollercoaster cart, after a series of teaser twists and turns, up the steep incline.  I can hear the grinding of the metal wheels against the steel track, clicking and clacking it's way up.  I remember the panic that struck me as I suddenly decided I couldn't go through with it.  I knew that within seconds, my stomach would be somewhere up in my throat and my own screams would break through my ear drums.  I remember turning to my dad with pleading tears streaming down my face..."I changed my mind, I don't want to do this, please get me offff......!!!!!" within a split second, we…

Never thought it would happen

This has probably been the busiest week on record or maybe it's just because I have been more exhausted than usual that it seems like a lot more to do.  Finally, I think we are ready for the big trip.  On Friday, I wasn't really sure it would happen.

As I finished up the last of the 'to do' list, I couldn't help but feel like this is a much harder trip to get ready for physically and mentally than the ones in the past.  Perhaps it's because this one holds potentially more answers, more diagnosis.  My response when people say, "Wow, that's a big thing you guys are going to have to do." has always been, "Oh, we are use to it, it's just the way it's always been." 

As I uttered those words, today in fact, I knew in my heart I was lying.  I never get use to this.  I never find pleasure or joy in this and it takes every ounce of mental effort I have to get through it.  One person even said, "Well, have a good trip, sounds like l…

Plans...Not sure what they are but...

All afternoon, this verse has been going through my mind...


I will admit, today has been peppered with feelings of hopelessness but when I started feeling overcome with insurmountable problems and feelings, I remembered this verse and it felt like I had received a memo from God.  I really felt his presence a lot today letting me know things really will be okay. 

It was really upsetting to lose one of my side jobs today.  I have relied so much on that job just to buy groceries, gas and cover some other small bills.  But as I did the needful thing today, I couldn't help but think that it is probably a blessing that I am no longer doing that job.  It was getting hard for me to do physically and I have a feeling that God is clearing my schedule for something more important.  Maybe it's another job, maybe it's not, maybe I will need to spend even more time taking care of my kids.  I have no idea and don't dare guess or judge because God never ceases to amaze me with the tri…

SNAP!

It was bound to happen sooner or later...I snapped!  Ughhh.   It feels horrible to lose it like I did, but worse when you hurt the feelings of some unsuspecting person who just happened to be in the wrong place at the wrong time. 

I have been trying so hard to get the insurance company to approve lodging reimbursements.  I started the whole process two weeks ago.  Well, today, I called them to see if they had approved it or not and they claim they never received the paperwork.  The guy was nice and said he would look into things and call me back. 

The call back came from a girl who told me that since they just received the paperwork today, it would take a minimum of 48 business hours before they would make a judgment on the request.  I knew for a fact that the paperwork was faxed back on the 8th so I told her that...nicely. 
"We did not receive it, I'm sorry so there is nothing we can do at this point.  Furthermore, since you are requesting to see doctors in Seattle you ca…

Unraveling- Warning LONG POST!!!

Ohhhh, it begins and so does my headache and rising blood pressure....the kids are unraveling. 

The boys have been suffering badly with allergies.  Sam has had a really bad sore throat for days because of the drainage and he seems to be drowning in mucus.  I haven't been feeling so hot for the last couple of months so yesterday, I packed everyone up and took them to the doctors, including me. 

When the nurse took my blood pressure, temperature, etc, Sam said, "Wait, why are you doing that? Are you sick?"
"Well, I haven't been feeling too well so I'm just going to be checked out too."
"MOM!! You can't be sick!  Who is going to take care of us if you are sick? It's not serious right?"
The nurse starts howling in laughter, "Ya MOM, you can't be sick!"  and she chortles her way out the door.  I was laughing too but now, I can see it was not meant to be funny, he was really upset.

By the time we got home, it was too late to…

Affirmations

This week, it's important for me to stay focused and positive, so here is another daily affirmation that brings good vibes into my life.  Hopefully, it will do the same for you!


If this is true... 

Then, I'm guessing he knows what he's doing and I just need to chill....

Really...it will be alright.

Even though I have my days when everything I hear is bad news, worrisome news, stressful news or no news, I do believe this...



At times, it's really hard to believe that things will ever be anything but chaos but I know better than believe that kind of doom and gloom.  Things will be better someday, just not this day. 
I think part of why things are so tumultuous and overwhelming right now is because in so many areas, the kids' care has been lacking.  I guess a lot of that is because I haven't been a very good advocate for my kids in the past.  Shwachman Diamond is such a rare syndrome that historically, it's been hard to find doctors who knew about the disease let alone understood how it progressed so I only focused my attention on the basics and let some of the other 'weird' things slide because I really had no idea where to turn.  Now that we have specialists who are becoming well trained in the area of SDS, I can see that so many things are not normal.
Last …

What To Do?

I have about two days to decide what to do about the infusions that Shelbie is suppose to be getting.  They wanted to schedule them the second week in May but knowing that bone marrow biopsies were coming up in June, I have been dragging my feet.  I am concerned that doing the infusions before the biopsies will mask problems with the marrow and make it look better than it really is. 

The cost of waiting could potentially be high.  Shelbie has such a hard time doing anything, it just wipes her out.  She did some things this morning for a couple of hours and came  home and slept for more than 4 hours.  I don't want to cause more problems for her but I also want a clear and accurate picture of her bone marrow.  The whole point to doing the kids' biopsies just 6 months after the last one is because they have many abnormal cells that have worried the doctors. 

I am hoping I get a surge of inspiration and will know the right thing to do soon. 


A Different Perspective

It's really hard raising a child with SDS in the United States where medicine is accessible, sometimes for a price but nevertheless, accessible.  I just read about a family in Turkey whose baby was just diagnosed with Shwachman Diamond.  She just joined the email support group I belong to.  To hear her story is a little sobering and makes me extra grateful that I have access to some of the top doctors in the world and they are only 13 hours away from me, not on another continent!

Right now they live in Istanbula and was a miracle that the doctors there could even diagnose SDS but now they aren't sure how to treat her and they don't really have great resources.  This family moves around alot for the husband's job.  They just escaped out of Libya due to the war there but he is now being transferred to another third world country filled with disease- the Maldives.  The doctors don't want them to take their baby because of the infection risks. 

I can't even imagin…

Is It Better To Know?

So, these are my thoughts over the last 12 hours.  Is it better to know what you are dealing with and will be dealing with in the future or is ignorance really the blissful state we like to pretend it is?

I'm really torn on what is best.  I want to know what is causing all the rare problems my kids deal with on a daily basis that just seem to get worse but yesterday was so overwhelming.  I spent a total of about 3 hours conferencing with nurses and Social Workers in Seattle just making sure everything is co ordinated and they are ready for three sick kids and one frazzled mother to ascend upon their quiet little exam rooms at Seattle Children's. 

By the time I finished all the co ordination, reality was, well,  REAL!!  I was spent emotionally.  I can see the pieces that they are all trying to fit together and it's a scary picture.  The Mitochondrial nurse and doctor asked so many questions about me and my mom.  She alluded to the fact that I will need to begin the mito te…

Get over it...

Tonight, I began thinking more seriously about my pending job interview.  It's not exactly a job interview, I'm actually trying to convince this employer that he needs to create a position for me.  Anyways, that's another story altogether but the truth is, I'm freaking out!

As much as I like to pretend Shwachman Diamond Syndrome doesn't exist, that's nearly impossible because it is a huge part of my life, a very big, intruding part of my life.  It very well could stand between me and this job, or any job for that matter.  There will come a point in the interview when I will have to disclose the fact that I may need to have flexible hours and more time off than usual to handle the health issues that continually come.  I may have to talk about our crazy life, the visits to doctors, hospitals, pretend everything's fine and do it all with a care free sort of attitude so I don't freak the prospective employer out!  I will pull it off without a problem then g…

Pretty quiet

Things have been pretty quiet around here as far as health issues go and it's been a long time since I could say that!.  I almost hate to utter those words for fear I jinx us.  I am slightly superstitious, paranoid, whatever you want to call it. 

Spencer continues to recover from the wisdom teeth extraction and is still not able to eat solid foods but aside from that, he is doing okay and making the best of things as he always does.

I really can't complain, in fact I am enjoying the little respite we have before Seattle.  The appointments are being scheduled and it is going to be more gruelling than I thought it would be.  As it turns out, we will be seeing the Mitochondrial doctors, not just the Neurologist so that's an interesting development and I'm not sure what changed to bring all that about.

I have lots to do before we leave.  I need to update medication charts for each one of the kids then begin compiling my list of questions for each specialist.  Getting in t…

It takes a lot of pudding

Wow, it takes a lot of pudding to fill a 17 year old up when that's all they can eat!  Spencer had his wisdom teeth pulled today.  Actually, 'pulled' is probably not an accurate word to describe what they had to do.  It was more like digging, prying...you get the picture. 

The teeth were so far up in his gums, they had to do an IV Sedation for the procedure which meant he had to be fasting so by 4:00 this afternoon when the sedation finally wore off, he was starving.  I made him milkshakes, smoothies, puddings but still he was hungry.  I made some cheesy mashed potatoes, then some soup.  He is still starving and I am out of fresh ideas of things to feed him. 

He is feeling miserable and in a lot of pain as one would expect but in the long run, it's good that we were able to get this done.  Spencer's been begging for months to have them taken out because he has been so uncomfortable.   Hopefully just another day or two of pain and he will be back to himself.  In th…

It's not always the obvious

Last night,  I had to be involved with a youth hike for our church.  I thought it was just going to be more of a 'stroll' or walk, not an all out hike up a mountain kind of thing so I encouraged Shelbie to come along.  I figured the exercise and fresh air would do her some good. 

It had already been a horrible day for her.  She had found out that her Counselor is moving to Wyoming so now she has to start all over and find another one.  We went through several just to find one she liked and didn't cry when they heard her SDS story.

We arrive at the bottom of the 'mountain' and really, we aren't talking about a Rocky Mountain here, just a local very large, rugged hill.  It doesn't look too bad but it didn't take more than 20 steps or so to figure out that the incline was much steeper than it looked and Shelbie was already struggling to keep up let alone put one foot in front of the other.  With a low red blood cell count and a very low hemoglobin, there …