Monday, February 28, 2011

Today's Appointment

I didn't realize that today, we would only be able to see the Medical Assistant, not the PA or Doctor so don't know much about the liver stuff.  We did find out that her platelets have dropped from Saturday night.  She is at 50.  I'm not sure what this means.  I have to email the doctor and wait to find out what the next step is.  I am assuming it will be to place the Pic line then start chemotherapy. 
     The nurse called after we got home to inform me that her iron levels are extremely low.  No big surprise so now we will add a prescription iron med to her collection.  As far as steroid side effects goes, she is still in pain and still having problems working this out of her system.  Today, she has been dizzy all morning.  So dizzy, she stumbled down the stairs then fell after she got out of the car at the Doctor's.  We can't be doing this as her platelets continue to drop.  Hopefully by tomorrow, she will be back to just feeling crummy instead of steriod induced crummy. 
     I guess the most popular question we are asked is "How is Shelbie managing this?"  Well, she is managing.  We make a big effort everyday to be happy no matter what is going on.  Humor helps to keep the spirit light.  I'm glad we are able to do this.  Feeling anxious and stressed every minute of every day would be a really hard way to live.  When we left the office this morning, the secretary asked if we needed a follow up appointment and I said "no".  Of course Shelbie had just made some joke so we had been laughing.  The secretary replied, "Congratulations!" 
I replied, "For what?"
"Well, you're laughing and you don't need a follow up appointment so that must mean you got good news."
"No, there is nothing good about the news we got today in fact, she will probably be starting chemo soon.  Unfortunately, you haven't seen the last of us!"
"Oh....okay. Alright then, I guess we will see you soon."  She said with her face all twisted and confused. 
         It doesn't make sense how we are able to maintain our sanity through all this but somehow, we have been really blessed.  It's not always easy.

Sunday, February 27, 2011

Where to start

Today started out horribly, the middle, thanks to a lot of pain meds was ok and tonight...well, it totally sucked!  
     Last night, the crazy side effects of the stupid steroids were still really bad.  This morning, her entire body felt like one great big bruise.  She could hardly walk and couldn't even stand to have clothes touching her body.  I loaded her up with meds to try to get the pain under control.  We had planned to meet some out of town friends for lunch and Shelbie was able to make that appointment but as soon as we got home, she started getting a bad headache and rest of the pain got worse.  I gave her more pain meds but then a fever started!  Geeshhh! 
     Finally at about 9pm, I decided to take her up to the ER for evaluation.  It took forever and they ran all sorts of tests to determine the cause of all these weird symptoms.  It has been decided that the dose of steroids she was on was just way too strong for her body.  There is nothing they can do about what is happening now, she will just have to wait until it works out of her system which could take a couple more days. 
     On a good note, her platelets came up to 70!  We haven't seen a count like that for a couple of months.  On a bad note, there is something funky going on with her liver enzymes, blood calcium levels and low potassium.  We will have to wait until monday to find out what these new crappy developments mean. 
     This is killing me to watch my daughter go through this day in and day out.  Our Bishop came up to the ER tonight to see how things were going.  Shelbie and I were in our usual mood of making stupid jokes and laughing at nothing.  The Bishop joined in and we were enjoying the way we passed time.  I'm not sure how it all started but Shelbie was saying that she tries to always look happy and pulled together when she leaves the house so that people don't feel sad for her and the situation she is in.  She doesn't want anyone to be worried and scared.  It was a sobering moment and I will admit, a few tears escaped but I am really proud of her for trying to be so strong. 
      We are home now.  Shelbie said, "I am really worried so I think I will laugh...I've done enough crying and that doesn't help."  So, we are laying here, too tired to get to our beds and laughing at things that aren't even funny.  In between laughs she moans and groans in pain because any movement hurts.  There are so many incongruencies tonight between how we feel and how we are acting, it's a little surreal and actually, not funny at all...if you think about it.

Friday, February 25, 2011


This has been the longest day ever!!  Things just seemed to go from bad to worse.  After two calls to the On Call Doc, she was not doing better and in fact, things had gotten worse.  She started with a fever late afternoon which is why I called the second time.  It was around 5pm.  Her face was still super red and getting swollen.  Her breathing was better but she still felt incredibly weak. The On Call Doc had said that I could wait a bit or even split the dose up.  None of this was sitting well with me, I didn't feel good about giving her the second dose at all! 
      I tried to keep busy so I wasn't worrying and getting all worked up.  I made two loaves of banana bread, mini pizzas for the boys and then teriyaki chicken, steamed vegetables and rice, all within about 2 hours so, ya, a little insane. Meanwhile, Shelbie is restless and feeling horrible. 
      Surprisingly, at 6:30 the phone rang.  It was Dr. Shimamura from Seattle!  I about dropped the phone I was so surprised.   She said Shelbie had been on her mind all afternoon and wanted to check in on her before the weekend.  I explained what had been going on all day and she felt strongly that I needed to stop the medication for today.  Steroids can mask an infection and the fact that her white count is so low and she is running a fever is not a good sign.  That is not a typical response even with a high dose like she is on.  She also said that the flushing, patchy rash was suspicious and if it continued, I needed to take her to the ER.  I felt a little better after talking to her.  At least I felt like that was validation for me to not give her the second dose. 
      We did avoid the far.  Her fever has stayed pretty stable, her breathing is better. Her face is still pretty red but doesn't seem to be as bad and the swelling is down so I am taking the wait and see approach.  I hate moments like this when I have make hard decisions.  I just don't trust myself.  
      It's all so disappointing.  What else can I say.  I know chemo won't be any better and could very well be worse.  If we can't get her platelets up with the steroid, she won't be able to have the minor surgery to place the Pic line in order to start chemo....It's so hard.  I guess we will try again tomorrow if things have settled down. 


That is the best word to describe Dexamethasone, the new drug Shelbie started yesterday.  Today she is feeling crummy and is just getting through a bad 'reaction'.  It was pretty scary so I called the 'on call' provider since the Oncologists office is closed on Fridays.  Her face got super red and blotchy with white patches.  She felt like an elephant was sitting on her lungs and she was having a hard time catching a breath.  Not only that, she could hardly move and was kind of out of it; dazed and confused.  I was afraid she was having an allergic reaction. 
     Apparently, this is just what steroids do to a person, makes them feel like they are dying!  Nice!  She is suppose to take another high dose this afternoon but that is really scary to think of adding more of this to her system.  It was going to be a really busy weekend.  I have a lot of commitments but it looks like that is going to change and I will have to stick around the house to keep an eye on her.  I would rather be safe than sorry.  I really hope she will be okay!  It is freaky enough, I almost just want to jump to chemo and skip this part.  I don't ever remember steroids being this bad. 
     Her platelets must be dropping as well.  She is covered in bruises and has purpura all over the roof of her mouth.  Poor girl!

Thursday, February 24, 2011

It's one thing...

      It's one thing to have to be a single mom, the 'gorilla glue' trying to keep everyone safe, healthy and mentally intact.  It's one thing to have to deal with unemployment.  It stinks and is taxing on your check book and your self esteem.  It's one thing to have your own degenerative disease that causes daily pain and fatigue.  It's one thing to have three children with the most annoying genetic problems ever!  Someone is sick or not feeling well every single day of every single week.  Someone is always questioning their existence, their safety and well being.  It can make you crazy.  It's one thing to have three teenagers, one at the prime age when the brain is stuck and the only thing that matters in the world is playing with obnoxious friends and they hate their family, and they remind you daily of how much they hate their family.  It's one thing to have a child so sick, chemo is the last resort. 

Unfortunately, it is not my luxury to be able to deal with just one thing anymore.  It's hard for me to remember when life was this hectic, well, not that hard to remember, it happens quite frequently but the difference is, there is usually a short break, a respite in between the crazy times.  There just hasn't been a break in months, going on years. 

Yesterday was a hard day!  I feel like I am stuck in a smokey haze with an undertow of fatigue.  I'm having a hard time keeping up on this treadmill of life.  I keep looking for an exit sign, I am ready to move on but alas, I know there is a reason for this rhyme and a method behind the madness so I will just keep on keepin on.  Sometimes though, I just wish it was one thing.

Wednesday, February 23, 2011

New Plan

I finally heard from our Doctor in Seattle.  Unfortunately, her mother passed away last week so was unable to get in touch with me.  That made me feel so sad for her!  I appreciate the time she has taken today to talk to our Oncologist here and get him on board with some different ideas and treatments. 
      Thankfully, Promacta, the new Thrombopoetin Agent is off the table!  The approach we will start tomorrow is a super high, 'pulse' dose of Steroids for 4 days.  In theory, it will raise the platelets and keep them raised.  If if doesn't work then she will for sure start chemotherapy.  Dr. S feels like we will be able to manage any possible infections before they overwhelm her. 
      I have felt okay about this treatment since it was first presented to us last Saturday night.  I know it will be really hard on her, especially since she has already done it before and knows how miserable it will be.  The steriods are no picnic either.  She has been on these lots of times before and never had much success with it.  I'm not expecting them to fail this time either but I am guarded in my expectations. The one positive thing about the chemo is that the drug they will use is the one they use to treat Lymphoma and some Leukemias so maybe, it will take care of some of those abnormal cells we have been watching over the last 5 months.  It is not likely that she will lose her hair, though it wasn't likely with the last chemo drug either but she did.  Hopefully this time, we will better know how to manage the nasty side effects and stay on top of them instead of being blindsided by them. 
       Maybe I'm getting ahead of myself.  I need to live in the moment, maybe the steroids will work out this time. 

Sunday, February 20, 2011

Wishful thinking

The hardest part about this blog is coming up with blog titles that aren't repetitive.  It seems that lately, we are living a real life "Groundhog Day" just like the movie with Bill Murray. 
     Anyways, I just had this feeling that maybe all this waiting around without answers was because she would go into spontaneous remission and no treatment would be necessary.  Well, that was not the case so it was a bit of bummer.  Her platelets are dropping fast.  She didn't get much of a bump anyways from the last infusion but now she is at 16.  Her white cells and red cells are low as well.  When all three blood lines drop it is called Pancytopenia.  It's not a good thing. 
     We continue to stay hopeful though it is work, really hard work and it's tiring as well.  Sometimes, the fear comes in waves and we just have to acknowledge it, feel it and move on.  So far this tactic is working.  The timing of all this is very interesting.  We just finished up the SDS video and video taped her talk for the big fundraiser this coming weekend in Seattle.  Shelbie and our Hematologist/Oncologist in Seattle are the guest speakers for the fundraiser.  It will be just another reminder to the doctors in attendance that lives are changed and deeply affected by diseases like SDS and ITP. 
      I can't imagine that it will be too much longer that we will have to wait to have a plan.  Her platelets will more than likely keep dropping and by mid week or weekend, she will be in single digits again.  We will be forced to make a decision.  In the meantime, I have been studying hard to find all the possible options I can for treatment plans.  I still hold on to the hope that she will go into remission before things get bad.  I don't see how I can't not hope for things to turn around but this kind of thinking does set me up for disappointment. 
     This week should prove to be quite interesting.  I am eager to see how things unfold, well, maybe anxious would better describe my feelings.

Saturday, February 19, 2011

Red Cross

This morning, Shelbie and I went to volunteer at a Red Cross Blood Drive.  I have never been to a blood drive before, I am not eligible for blood donation and of course Shelbie isn't either but this was an opportunity for us to "Pay it Forward".  Shelbie has been receiving blood products for 4 months now and everytime she receives them, I feel a great deal of gratitude to those people who took the time to donate.   It really does save lives!  I'm not sure the people who donate really understand the burden they lift from someone in a time of emergency. 
       Shelbie and I were in charge of checking people in.  I was really surprised at the restrictions they place on individuals.  You not only have to be physically healthy but morally clean as well.   It's scary to think how much the world is blurring the boundaries of right and wrong.  Drug abuse and immorality is out of control, even in our own little town.  Will these individual choices ultimately handicap the ability for us to save lives?  As people signed that they were eligible to give blood, I just wanted to hug them all and thank them personally for living in such a way that they could be there.  Then, I sat there nervously hoping and cheering that they weren't too scared and didn't pass out when they were through!  Everyone on my watch did just fine!
        Thanks Red Cross!

Friday, February 18, 2011

Good Gifts

Last night, as I pondered on the intensity of the past 4 months I have come to appreciate and recognize all the ways we have been blessed, guided, directed and have had people placed in our path for the very purpose of reminding me that God is giving us good gifts.
     It use to be that I prayed and prayed for God to make my kids better but that prayer was never answered and I was left feeling disappointed and burdened. It wasn't until three years ago when Sam was really sick and had spent nearly two weeks in the hospital with an intecesseption that I learned a valuable lesson.  His small bowel had started pulling itself back inside, like a sock twisted and turned inside out.  He needed emergency surgery to repair it and that created a huge and highly contagious infection.  It seemed that every time I prayed for him to get better, he got worse.  I finally realized that even though God was not where I wanted Him to be, He was busy orchestrating something better for us.  I came to see His work in more important places than where I thought he needed to be. 
    Thankfully, that is one lesson I actually learned from and have never forgotten.  Now I don't expect God to be anywhere I think he should be, instead, I keep an open mind and my spiritual eyes wide open and find Him in all sorts of unexpected places. 
     Each trial I have had prepared me for this trial.  I got new visiting teachers several months ago and they too have proven to be a great tender mercy for me.  One of the ladies who comes to visit lost her daughter a few years ago to a bad car accident.  She has been able to share so many comforting thoughts with me. I definitely feel like God sent her to teach and tutor me for some distant day in the future.  Sometimes, I hear from God in a song playing on the radio, in books, scriptures and those I meet everyday who offer some piece of wisdom and light in what they say.
     Shelbie spends a portion of her time reading conference talks and scriptures.  I know that she too is being taught and prepared at the hand of the Lord.  Yesterday, we found ourselves at Deseret bookstore and found that so many of the book titles inspired me to hang in there and know that God is leading us along.  One book was called Hard Times and Holy Places by Kris Belcher.  In the synopsis, it mentions that often the hard times we go through are holy places because we can be so close to the spirit and feel the atonement working in our lives.  I could totally relate to that idea.
      We are in a very holy place right now.  Inspiration, revelation, mercy and love comes in many forms, many times a day.  In this respect, it will be sad when we move on from this very, special time when we are closer than we have ever been as a family and life is so sweet!  It really is and there really can be peace amidst that chaos.  I have found it!

Thursday, February 17, 2011

No News

No news yet.  In some ways it's been nice not to have to make a decision yet at the same time, a little unnerving.  With the weekend coming, a long weekend at that, I was really hoping to have a plan in place just in case things go South this weekend.  Everyday that goes by without a set plan is scary since everyday her platelets are dropping.  Tomorrow will be one week post IVIG.  Lately by day 9 post infusion, her platelets are all but destroyed. 
      During the day, I try to make money to support my little family and be a mom, and by night, after the kids are in bed, I become a Scientist, Doctor, Researcher and Philospher.  I have been doing so much research into other treatments, alternative methods even.  I have discovered some interesting things though I'm not sure if any of it is significant.  With each new piece of information, I add 5 more questions to my list. 
      I found something intriguing about people who are RH Positive and have refractory/chronic ITP.  They are to be taking IVRhIg, not IVIG.  Shelbie is RH Positive and yet she has been taking the IVIG instead of the gamma globulin for RH Positive people.  Could that be why the IVIG stopped working?  The literature suggests that IVRhIg be done with IV Steroids, alternating treatments for those who stop responding to other treatments.  I am wondering why this has never been an option for us?  Everyday seems more puzzling than the one before. 
      Today was definitely less emotional than other days.  Probably because we have slipped slightly into denial and the past week is merely a foggy memory. 

Wednesday, February 16, 2011

Hard day

Today was okay really, it was tonight that got a little harder.  Maybe it was because my kids kept asking me what was wrong over and over again.  Finally I inquired, "Why do you all keep asking me what's wrong?  I'm fine!"  Shelbie and Sam took my hands and led me to the bathroom mirror, "Have you looked in the mirror lately?  What's wrong with your eyes?"  Oh, then I saw the dark, shadowy circles dragging my face down.   The nerve of these kids!  Just kiddin'! I'll admit, I'm a little tired but what da ya do? 
      We had our usual ups and downs the dreaded conversations of life and death.  After I got home from YW, I took Spencer on a little drive to finally explain to him what is happening with his sister.  I tried really hard to spin it in a positive light but he didn't take it so well.  Of course he is scared, how could he not be.  We talked alot about preparing spiritually for whatever comes our way.  I don't know what the outcome of this will be.  We have been in stickier situations than this when catastrophe seemed to be lurking ever so close yet here we all are.  I like to think this is not the beginning of the end for Shelbie, I know this is going to turn around. 
      The job at hand is to teach the kids how to be spiritually prepared and strong so that when bad things happen they will only bend, not break. It was really nice to have that time with Spencer.  Boy do I have my work cut out for me!  There just aren't enough hours in the day to accomplish it all. 
      Thought I would wrap up this day with the lyrics to this song.  No matter what, God is good!

"Praise You In This Storm" by Casting Crowns

I was sure by now
God You would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say "Amen", and it's still raining

As the thunder rolls
I barely hear Your whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away

And I'll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
And every tear I've cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm

I remember when
I stumbled in the wind
You heard my cry to you
And you raised me up again
My strength is almost gone
How can I carry on
If I can't find You

But as the thunder rolls
I barely hear You whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away


I lift my eyes unto the hills
Where does my help come from?
My help comes from the Lord
The Maker of Heaven and Earth

Monday, February 14, 2011

Gotta love these pics

It's tradition to take pictures while we are on our hospital adventures.  I didn't take a lot because it was hard to find a moment when I felt like capturing the difficulties of the weekend.  I did try to get a picture of her petechiae. ( pronunced pe tee'kee i).  Petechiae is one of the first signs that tells me her platelets are dropping usually below 60.  They look like freckles or red measles but they are broken blood vessels and the blood starts pooling under the skin.  As the platelets drop even further, the petechiae becomes purpura.  Basically, larger freckles of blood.  Of course bruising becomes really bad too.  On Saturday, she developed huge bruises on her wrists just from the nurse taking her pulse.  Hard to believe that just resting your fingers on her arm caused such a bad bruise.  The pictures aren't great but hopefully will give an idea of what is going on. 

Barely see the bruise beginning

The large dot is purpura.  She had tons of these all over her back and neck.  All the other red splotchy marks are the petechiae.
bruises started forming just from bending her arm.  Spots of petechiae and purpura.

She had a nasty issue with bleeding, to be expected when your platelets are only 5.  This was from an IV that didn't work out. 

Her legs were covered.  She looked like one big freckle but it was petechiae and the shadowy areas are bruises.
This is what her wrists look like tonight, still pretty nasty though the petechiae is starting to fade.
I had emailed our doc in Seattle last night and I heard back from her today through email.  She told me not to get worried, she would find answers.  After she had a chance to talk to our doctor here, she would call me with some ideas.  I felt a lot better after reading her message, there just has to be a better way.   I really hope she has some awesome ideas, miraculous ones!  I expect I will hear from her tomorrow or Wednesday.  I told her that I was willing to come to Seattle for whatever length of time it took to help Shelbie into remission.  We'll see how things unfold but wouldn't it be great if she went into remission this weekend?  That would just be the best thing ever!!  Here's to hoping!!

What a girl!

Shelbie has been really strong through all this.  She has her moments of course but really, to visit with her, see her, you would never imagine the turmoil and problems she faces.  This morning, I was trying to keep the mood light so of course was being crazy, dancing around the living room with heart garland trailing in her face and she interrupted my fun with some of her own deep thoughts. 
     She said, "Maybe healing isn't about making me better.  Maybe healing is preparing my spirit so that I can go home.  I need to be ready when it's time to go."  It may seem that this is a sad and horrible thing to hear but there was so much peace in the words she said.  We all need to be healed.  We all need to have more faith, more hope and none of us can really afford to waste anytime with things that will not matter an eternity from now. 
      I am really proud of her!  Today has been a really good day.  We are sucking the life out of every moment we have and that makes me happy!

Sunday, February 13, 2011

The Saga Continues

Overwhelmed!  That word is often overused by me, so in my effort to be creative, I guess you could also say I am crushed, conquered, defeated, deluged, engulfed, overcome, smothered, submerged and swamped!  Pick one, it will accurately describe the last 24 hours of our life. 
       After the long discussion, we felt resolved that Shelbie would start the chemotherapy agent Rituxamin to help bring her ITP into remission.  As of this morning, things have taken a complete opposite direction and we are back to square one!  Rituxamin was taken off the table for now because no one took into consideration what that would do to her immune system that is already very sick.  The doctor this morning said that "If she gets any kind of infection while on Rituxamin, she will die."  Now we are back to choosing between one crappy option and a crappier option.  Sorry about the fabulous english.  "Crappy" was a better alternative to other word choices I can think of.
       I don't know what the answer is but as I stood in my thinking place this morning, the shower, I was flooded with all sorts of thoughts.   Experiences came to my mind of ways we have been prepared over the last 8 months for this very moment.  Blessings and tender mercies abound but I have been so consumed with fatigue, fear and even moments of despair that I couldn't see them.   We are so blessed or, I guess you could say we are favored, fortunate, joyful, lucky, content, beautified, rewarded and saved.  Shelbie, Spencer and Samuel will be saved regardless of how their bodies break down, our family will be saved. 
      Almost a year ago, I became involved with our neighbors, an older couple.  I have always been friends with them but that friendship became much deeper as I served them and helped them with the difficulties of their life and they served me back.  I have always felt like their presence in my life was a blessing but that blessing appeared even brighter this morning.  The wife of this special couple passed away last week, I have mentioned that already in previous posts.  At her funeral, they spoke of a heart condition she had had some time ago.  Because of her other health conditions, they could not operate to remove the blockage.  All she could do was receive a priesthood blessing and have faith. Somehow, her body created new paths for the blood to move.   I don't know how long ago that was but she was able to accomplish great things in her life before moving on to eternity.  That thought brought me so much peace this morning.  Maybe it doesn't matter which treatment we choose.  Regardless of the consequences of each option, God will make things right until it is her time to die.
      I think what is more important than making the right choice, we need to have faith and hope in our choice, not look back, seize the moments that bring us joy and move forward into the darkest of dark times. I have also learned that every person we meet on this journey, everything we experience is there for our learning and our good.  I can see now that everything is as it should be except the chaos.  I need to focus on keeping the despair and fear at bay so that God can put His meaning on the work He is doing in our lives.

Saturday, February 12, 2011


Nothing is worse than having to choose between one bad choice or another bad choice.  Those were our options we were faced with this afternoon as it became apparent that IVIG is no longer an option for Shelbie.  Just having the nurse check her pulse has left her with big bruises on her hand. It really is unbelievable.  We had a really good talk with our Oncologist's partner who was on call.  She is still in the hospital since the headaches and nausea have struck.  We have decided that the next step is to start the drug Rituximab.  It is in the chemo drug family and is commonly used to treat lymphoma or leukemia.  Shelbie is deeply saddened by this and so am I.  It's not going to be easy.  She will have infusions once a week for 4 months then move to a maintenance schedule.  This is as I understand the plan to be.  Things can change in a second these days but this is our plan today!  Our regular doc will be in tomorrow and we will work out the details.  This means that she will need a pic line or port. Just hearing the doctor come to this conclusion sent fear flooding through us both.  Her last nightmare with the chemo drug VinCristine was enough to do her in and it's just so hard to face it a second time.  Needless to say this afternoon has been filled with a lot of tears.      
          In some ways, the tears are out of relief that hard decisions have been made and a new plan will soon be underway.  I hope I never regret this decision.  I feel a certain amount of peace even though it is scary so now we just have to move forward, work the plan and have faith and hope that God will make it good.  Of course, I am filled with all sorts of other concerns that are mostly financial.  I just can't imagine how I will balance all this.  Now it really seems impossible that I will be able to work, even my cleaning jobs seem so overwhelming to consider right now.  With all this being so long term, I wonder how I will keep everyone decompressed, sane and pay my bills.  I feel quite a burden yet in the back of my mind, I know that God will take care of us.  He hasn't brought us this far to drop us now!  I truly believe that!  The work comes in keeping fear and despair at bay and just concentrate on the moment.  I'm afraid some of those moments will include jags of crying, out of control laughter and moments filled with peace and contentment.  What a ride we are about to take.  The thought just hit me that I will now be able to post about this part of the journey since I totally tried to skip out on it in 2007.  Interesting how life works!  Bad karma sucks! ha ha

It's Better to Know...

It's been a really long day.  I think in the last four days, I have only gotten about 9 hours of sleep. Last night, I slept from 4:30 am until 5:30 am.  I am far beyond tired now.  Shelbie and I just sort of sit here in a vegetative state staring at the TV but not really paying attention to what's on. At some point this afternoon, this commercial caught my attention.   It made me laugh cause I feel like the guy being thrown around by the little spider.  I'm sure Shelbie feels the same way!  Gotta keep up the humor in times like this.  It is better to know what is coming next...I just wish that was possible!

Upside Down and Inside Out

Tonight's news is not good, neither is it sideways.  It is upside down, inside out and just plain bad!  Shelbie has gotten into big trouble tonight.  She began bleeding under her skin and gums around 3:30 this afternoon.  Tonight, I took her up to the hospital.  I figured we would do the lab work first and if it was bad then we would check into the ER.  So, here we are in a nice room with a big window overlooking mechanical equipment and drifts of snow with a parking lot below!  Yup, she was admitted.  Her platelets were only at 5!  The bleeding got worse and this is really our first experience with that!  Her hemoglobin is dropping like a rock because of the blood loss.  I really wasn't sure what to expect.  I sort of thought they would send us home until Monday when the Doctor's office is open. 
      It took quite some time to get all the meds checked in, IV started and then pre med.  They started the IVIG infusion about an hour ago.  The nurses are great here!  I am really happy with everything so far.  They have been much more informative than what we have experienced in Short Stay, though those nurses were super nice too.  Last week, Shelbie had a hard time breathing at one point and couldn't stop coughing.  The nurses at the time had no idea what to do and didn't know what was causing the weird symptoms.  Tonight, they brought in a consent form to receive blood products and it listed all the possible side effects.   Coughing and difficulty breathing were on the top of the list for less common problems.  Good to know! 
     They also started her on a new drug that stops bleeding in emergency situations like we find ourselves in.  The only drawback is she had to take 12 pills all at once and will take another 12 in 6 hours.  So far, she is stable, physically at least.
     Emotionally, it has been a hard two weeks.  She is still really scared even though she is in the hospital and her nurse is checking on her every 15 min and is sitting literally at her door with a portable computer.  She has refused to sleep until just a few minutes ago.  I assured her that I would stay up to watch her and the nurse would continue to be attentive.  I can't imagine how she feels to be going through this.  She also wanted to leave the light on in the room and the tv going.  I'm sure the nurse thinks I am the one who wants the tv going and the lights on!
       I have lots of thoughts tonight as I sit here.  Trying really hard to not let fear take over my thoughts.  Fear of what the outcome of this will be and fear for the boys.  Sam is not doing well tonight and Spencer is up in the mountains with a friend's family snowmobiling.  I just pray that he doesn't get buried in an avalanche or something horrific like that.  He promised he would ride "gently" so he doesn't re injure his back.  Ughhhh! Our luck doesn't seem the greatest lately and we tend to have one problem on top of another!
      Once Shelbie was settled in her room, I had to run home to get all her meds and some other things. When I got in the car, the song Consider The Lilies was playing on the radio.  I love that song but love the last verse most of all....
"Consider the sweet, tender children
Who must suffer on this earth...
The pains of all of them he carried
From the day of his birth.
He clothes the lilies of the field,
He feeds the lambs in His fold,
And he will heal those who trust him,
And make their hearts as gold."
       Tomorrow morning our doctor will be here.  I know there will be some hard decisions to make.  I don't know what to do but God does know what will be best for His daughter.  I hope I am able to trust the answers that come. 


Friday, February 11, 2011

These are the moments

I wanted to let that last bit of good news simmer in my mind for a couple of days before jangling it all up with a little more "sideways" news.  It's been an emotional week.  We spent all day at my friends funeral yesterday first attending the funeral then working in the kitchen for the family meal.  It was a long and tiring day but at the same time very inspiring.  The talks at the service were awesome.  Her children all spoke of fond memories they had.  All the talks reminded me that nothing and no one should ever be taken for granted.   My friend had MS and some heart problems.  She knew what it was like to suffer yet she was always trying to make the best of things and having fun in the midst of pain and discomfort.  During one of the talks, Shelbie leaned over and said, "Their family is crazy like ours!"  Crazy fun!  We really try hard to keep our sense of humor in an effort to keep our wits about us even if we come off crazy to those around us. 
       Shelbie is getting more photography business each week so we headed into town to find some more props for her.  She hasn't felt well all week and yesterday was too much for her but we shopped anyways. We had some great moments while browsing through antique and thrift shops.  We laughed a lot even though we were both draggin!  It seemed like everything we looked at left us in stitches.  One thrift store we went into had tons of work out equipment like the Ab Lounger, Ab Rocker, and some wanna be treadmills and elipticals that existed long before my time.  We tried out each piece and were laughing so hard.  People around us were serious thrift shoppers and not impressed with our frivolity. 
      After finding nothing, we went for lunch at Taco Bell for a .69 taco.  It seems that it's always over food when I have the best talks with my kids.  We talked about so many different things, heartfelt things.  I couldn't help but think that these are the moments that really matter. I know Shelbie is so scared of the future and though it's hard to hear her talk about her fears, I felt so rich and blessed to have felt a part of her heart that is so young and tender still.
      At the funeral, they talked of regrets and how they had none.  Though I have plenty of regrets, like wishing my kids didn't have to be part of a tattered family, wishing I was married to someone loving and kind, I have no regrets when it comes to my kids.  We have loved each other deeply and shared the good, the bad and the ugly and are stronger and closer because of that!  I wouldn't trade the life we have with anyone!

Wednesday, February 9, 2011

Good News!!

I heard from our Boise Doc late yesterday and Spencer's tests for his pancreas came back and he no longer has to take enzymes!!  Wha Hoo!!  That will save us over $600.00 a month and 9 pills a day!!  I am so glad for him that that part of the disease is doing better.  It is not uncommon for SDS kids to do better when it comes to the pancreas as they get older.  I am so happy!!
      There was however some "Sideways" news as our doctor likes to say.  All three kids are very depleted in Vitamin D.  They will be on a prescription strength medication and will have to take 50,000 mg every day, for three months to get them back on track!  That's going to be a lot of pills to swallow and I'm sure it won't be cheap but, at least there is an easy fix, unlike the other stuff we deal with!

Tuesday, February 8, 2011

Random Thoughts

Lately, I've really been feeling overwhelmed with all that is going on.  It seems like every time we turn around, there is a new problem to deal with.  I have been thinking how much easier it would be to live under a rock and not have to face people.  I think that is where the biggest stress is for me.
     As I'm out in the world, especially my world, I see people I know everywhere I go.  There is always that inevitable question, "How are the kids doing?"  That question sends my mind racing.  Do I tell them how things really are or just glaze over it all and pretend like we are fine?  Do they really care how we are or is it just a moment of cordial thought?  I usually try to gloss things over and that works until from nowhere,  a really big problem comes up and then people are left wondering what in the heck happened because I am always saying things are fine!
     It gets embarrassing to have to admit what we face in any given week.  People look at me with shock and awe and I hate that look, that feeling.  I realized that the way I view my life and the way others view my life are two polar opposites.  I see that we are dealing with a chronic disease.  It is not going to go away, there is no miraculous drink, pills, potions or magic berries grown in the Amazon forest that is going to change what is happening, though there are some who believe those kinds of things exist...believe me, I've been hit up to try everything!  Other people see us as a normal family with real bizarre things going on, hence, it is overwhelming and unbelievable to hear about our lives. 
      Looking at this in the context of 'NORMAL' then ya, we are messed up and this life of ours  is CRAZY!!!  Looking at it in the context of Chronic Illness then we really become quite normal.  The reality is, the body that my children were given are not functioning, and are in fact deteriorating.  There is going to be a breakdown of certain functions that the rest of us take for granted but it's normal in the process of disease.
      I guess what I'm trying to say is, we really aren't that strange and we really are use to this crazy life.  Most of those who read this blog are only catching the last 6 months of our journey and it seems out of control but this is the same journey we have been on for nearly 19 years.  19 years of this!  Some years were better than others, I'll admit but really this is nothing new for us.  Truthfully, it has become more complex and more organs suffer and I worry more about losing my kids to this disease before they can find a cure but still, it is what it has always been. 
      I think the more I can remember this concept, the more comfortable I will feel sharing our life with others in public.  I hope others we meet along the way will not be so scared of us and so overwhelmed with our story.  It's our normal! I have more thoughts on this and will post as I sort them all out.  For now, it's time to take Shelbie to the hospital.  She just had a bleeding episode and petichae is showing up...praying her platelets haven't crashed already!  sigh.....

Monday, February 7, 2011

Some Results

Well, not everything is back yet but Shelbie's vitamin levels are back and they are low.  Her vitamin D specifically is low.  Low vitamin levels is one of the hallmark features of SDS so these results are interesting.  It is also intriguing to know that Vitamin D does more than just strengthen your bones.  It also helps control your weight, something Shelbie has been struggling with for awhile now.  She tries so hard to watch what she eats and exercise when she can.  Maybe starting a vit D therapy will help boost her efforts.  Low Vitamin D can also cause muscle pain and bone pain, something all the kids struggle with!  It's too bad they have to take more pills but hopefully it will make a difference in so many ways.

Saturday, February 5, 2011

SDS and other news

Tonight I've been working on the SDS movie for the big fundraiser coming up on February 26 that The Butterfly Guild and Seattle Children's hospital is hosting.  It is has been cathartic in some ways to sort through almost 75 pictures of kids all suffering with SDS.  They are so sweet and some of these kids have been through the most challenging of problems yet they always seem to be smiling.  I really hope that I can get permission from everyone when the movie is done to post it here.  It's pretty moving. 
     I had a surprise phone call from Dr. S in Seattle.  I was surprised by it because normally, we end up playing phone tag but this time she got me on the first try.  I was also just expecting an email, not a phone call.  She has done lots of research for me on this new drug and gave me some interesting things to think about. 
     If Shelbie starts this new drug, she will have to have a bone marrow biopsy every two months to track the changes that it makes to her marrow.  If it starts causing problems, there's a chance those problems will be irreversible.  Right there was enough to convince me that this is not the avenue we want to take.  So, I will meet with our local Oncologist to discuss where we stand.  I know it will be a tough meeting but I am the only one who is advocating for my children so I just have to do it!
     She offered some other disturbing news and I am choosing to ignore it for now at least.  She thinks it's time to test Shelbie for Lymphoproliferative disorders.  Obviously, she is not a standard ITP case and there needs to be more work ups done to determine what else is going on in her body.  This disorder she is referring to is basically a series of separate diseases that they group into one disorder. The diseases are ones like Lymphoma, Leukemia, etc....I just can't go there right now.  I don't feel like we are dealing with any of this yet so I am going to hold off....I think.  I guess I will talk to our doctor about it next week but it just doesn't feel like there are any glaring symptoms to bring up this kind of stress.  So, for now, I will do with this information what I usually do, keep it in the back of my mind to retrieve at a later date and try not to let it worry me. 
      It's crazy because logically, I know that these kinds of bad things are potentially coming but when anyone even makes mention of it, my anxiety flies off the charts if I can't dismiss it quickly from my mind and sink safely back into my ignorance and denial!

Wednesday, February 2, 2011

Rocks and Hard Places

Last night, as I tried to console Shelbie and convince her that she wasn't going to die, I thought of all the hard things she has had to do in her life.  Now, it seems that we are to that difficult point, a rock and a hard place.  No longer are the doctors thinking that this episode of ITP was just a passing hiccup.  We have now moved to the chronic list and there is really no end in sight.  This may very well be her new normal. 
    It was so hard to see her sad eyes, lips quivering as she asked me for the 100th time if she was going to die.  I don't think she is going to die.  Not this week at least!  I just don't think God is done with her yet.  We had a nice talk about the realities of life, disease and all that.  I don't think she felt any better about her situation though.  Finally, at about midnight, she asked if the boys would sleep with her so if she died she wouldn't die alone.  The boys had just barely fallen asleep but I woke them up and dragged their mattresses onto her floor beside her bed.  They were so happy to help our their sister and I love that my kids love each other so much!  None of the kids have frames for their beds so it was kind of fun to see all three of them side by side, on the floor, filling the room.  I would have taken a picture but I'm sure that would have started a pillow fight and mayhem.  They don't like pictures on a good day when they are wide awake and feeling fine!
      This morning, she is emotionally better though the pressure is building in her head.  They called off school today so they are all laying in the living room watching a movie.  It's nice the boys can be home today.
        It's been sort of a stressful week.  Our sweet neighbor died on Monday and that shook us all up.  The kids and I have been really close to them and I was blessed with the opportunity to spend Monday morning with her.  I was also able to be with them right after she passed away. I hurried home to make dinner for the husband and some of their grown children who were starting to arrive.  It was after 6 when I got home and the boys got straight to work peeling potatoes, running to store for supplies and doing whatever needed to be done.  Shelbie was sick but helped a little too.  They were a huge help and I was able to have the meal ready just after 7 when the mortuary left.   It is so sad and I think maybe losing her is contributing to Shelbie's set back.  I am always glad for the opportunities every day we have to serve.  It really helps keep us sane around here.  I'm proud that my kids are learning that principle as well.

Tuesday, February 1, 2011

Infusion done

It's been a tiring, long day!  The infusion is done and it went about the same as it always does, low blood pressure, fever and then at one point this afternoon when they increased the rate of infusion, it started getting hard for her to breathe and couldn't stop coughing.  Who knows what was happening!  They backed off and slowed things down for the last 3 hours and she improved somewhat. 
      I am not looking forward to hashing out a care plan with our doctor.  I heard back from Seattle, they agreed that the new drug would not be a good option for Shelbie but the lab who was part of the studies and manufacturing I guess is in Seattle so our doc there was going to check right at the source and get back to me after they give her their opinion.  What isn't in Seattle?  It's amazing to me the kind of resources they have medically speaking in that town!  Dr. S has certainly been a gold mine of information.
     While sitting around the hospital, I got the recording studio booked for Saturday.  Shelbie will be recording a song for the movie I am putting together for the Butterfly Guild.  The young men that will be working the studio that day are so nice and I think I will be able to pay them in cookies!  That's even better!  The talk is written so I just have to get the video put together and Shelbie will need to read her talk while being taped so we should be ready to send it all off next week!  I'm not sure if I will be able to post the movie since that would mean getting permission from lots of families to post their children on my blog.  I will see how it all works out though.  If nothing else, I will post Shelbie's song.

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