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Showing posts from February, 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 induc…

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 …

Indescribable

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 surpris…

Nasty

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 w…

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…

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 time…

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 vi…

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 th…

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 …

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.  T…

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 ou…

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. 







I had emailed our doc in Seattle last night and I heard back from her today through email.  She…

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 make…

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&…

Choices

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…

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 r…

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. 
       S…

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!

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 an…

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.

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 ma…

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 …

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 st…