Thursday, December 30, 2010

Small World

I can't even describe how nice it was to be away from here but I learned alot about my life while I was gone.  I learned just how small my world is.   I don't know if I can explain this well enough for anyone else to understand but here goes. 
     I am reading a book right now called Room by Emma Donoghue.  It's about a girl who has been abducted and hidden away in a shed for 7 years.  9 months After an incident with her abductor, she has a baby who now lives with her hidden away in this shed that has no windows and a locked door.  It measures 11' square but he provides her with a flushing toilet,fridge,tv, table, bed and wardrobe.  He drops off food every now and again but only the essentials.  The story is how she tries to raise this boy creating a world that seems normal for him so he isn't scared and doesn't feel like he is being held captive.  The boy has no idea that any world exists beyond their tiny world in the room. 
     Sometimes, I feel like my world is like this, small and foreign.  Sometimes, I feel like I too am trying to live in a world that is not normal but I pretend it is.  If I don't know what I'm missing then it's really okay, I find my groove and there I stay.  I think my kids are totally normal until I see that all the pain and fatigue they experience is not what everyone else outside our world experiences.  Pain, nausea, fatigue are not things anyone else has to deal with everyday but it's our normal.  Activities that you don't even think about like shopping, working, eating, playing can become a real problem for my kids. 
    When I escape this world, like I did this past week, I think of how much I have isolated myself from the world.  Maybe it's all the sickness and disease we have no choice but to deal with that has made us transparent, even invisible at times.  I guess, it really does feel like we are being held captive when we see what a 'normal' life is like.   We become too big for the world, people get tired of hearing about all the problems that never go away and so I retreat to where it's safe in our little 11' x 11' room that we have become so familiar and comfortable with. 
     Tonight, the kids had to go to their dad's for the start of the New Year's holiday and here I am sitting home, the house is dead quiet, and it's a little lonely.  I think about all the things I haven't accomplished the past few years and talent I've wasted perhaps.  I think about the life I don't have when my kids are gone.  They are my life.   I worry that I need to do something to increase the size of my world but what...what would that be?
     So, I guess while I have some quiet time, I will try to figure some things out, contemplate a future that feels like it already has a ceiling on what I can or can't do.  There has to be more.  I had this talk with Shelbie, she feels the impact of her small world as well.  It's just one side effect of chronic illness that I hadn't anticipated or fully understood until now.  It's a little hard to think it through and I fear I am not doing as good a job as I did when the kids were younger and could hide their disease from them.  I never wanted SDS to define their life but in so many ways, it was sneaky and has taken so much from them already.

Sunday, December 26, 2010

Week One Post IVIG

Well, it's been just over a week since the last infusion.  Shelbie is still pretty tired and sleeps alot which is good.  We haven't done too much but play games and eat.  Last night, she was sick with stomach flu kinds of stuff but I loaded her up with Zofran and sent her to bed.  We were able to avoid anything too nasty and she was feeling better this morning. 
      Tomorrow will be our biggest day yet.  We will be going to the West Edmonton Mall again but this time to shop.  The kids received some gift cards and money so they are really excited.  Fashion here in Canada is a little different than Idaho and they have quite a few stores here that we don't have so that will be fun to break into a different style.  I will have to rent a wheelchair or scooter for Shelbie, I can't imagine there is anyway she will be able to get around otherwise. 
    I'm already getting depressed at the thought of coming back.  There are so many reasons why we need to get out of where we are at but so many reasons to stay.  I have come to realize on this trip just how small our world is.  I'm trying to decide if I like that or not.  At any rate, whether we want to come home or not, we will be leaving in two days...it just hasn't been long enough.

Thursday, December 23, 2010

Much needed break

Coming to Edmonton has been just what the kids needed, especially Shelbie.  It has done wonders for her spirits.  She is really tired but hanging in there and enjoying the break from doctor appointments and worries.  She was able to have fun in the wave pool today but had to rest a lot because she is still really weak and runs out of steam.  She took at nap in a lounge chair by the pool then spent some time relaxing in one of the three hot tubs. 
     I will admit, going for bloodwork everyday is comforting.  It is nice to know where she stands so we can be proactive instead of feeling like we are blindsided all the time.  That's the only hard thing about being here.  We can't just run to the clinic or hospital to check on things.  I can always assume that the IVIG continues to work it's magic, dump the immune system but bring up the platelets. I know the first thing we will want to do when we get home is go for a blood check. 
     On the flight here, I had to be sure to take plenty of precautions for her poor immune system.  I packed anti bacterial wipes and we used them to wipe down the armrests, trays and anything else we came in contact with in hopes that no one, especially Shelbie would get sick.  It was disgusting to say the least the amount of crud that came off those armrests and trays with just one swipe!  If I didn't have OCD before, I have it now!  It started me thinking about all the things we touch on a daily basis that appear to be clean but lurking under that disguise of cleanliness is a mess of germs.  Ewwww!  So for now, everything is good...too good.  I don't ever want to come home.  I want to pretend that the last few months have just been a bad dream!

Tuesday, December 21, 2010

Update

Platelets are coming up today.  She is at 80 which is okay but still really low.  Good enough for us to go home for Christmas though.  We will have to take some precautions because her white count is super low and her hemoglobin is suffering too.  This means that she can hardly walk 20 ft without feeling winded and extreme fatigue.  We will have plenty of time to make our way through the airport and I have packed lots of antibacterial wipes, lotions and anything else that will keep her germ free.
      I feel so relieved that we can go.  It has been a busy afternoon trying to get ready.  I have people coming to stay the week at our house so the house can't just be clean but squeaky clean!  The kids are really looking forward to this trip.  Lately, the tension and fatigue has been choking us.  It feels like we are getting a pass out of jail. 
     I will continue to update and post from Canada.  Hopefully Shelbie won't have any problems while we are there.   It would be nice if we were going with better functioning bone marrow but that's life!  I hope I will be able to leave our worries here.  As soon as we get back we will be bombarded with hospitals again.  Shelbie will more than likely have surgery soon after we return to place a port or pic line, at least that is the talk now.  Spencer will undergo some very uncomfortable allergy testing, worse than last time and the following week, we head to Boise for a visit to our Gastroenterologist and St. Lukes Hospital.  Somewhere amongst all of that, there will be another infusion for Shelbie and unless we try something new, another bout with aseptic meningitis.  So, I really hope we get a lot of rest and recouperation out of the next 6 days.

Monday, December 20, 2010

A fun surprise!

Sunday, Shelbie had some visitors.  I have known them for a year or two but not really known them well. We mostly just say 'hi' when we see each other.  They have a daughter just younger than Shelbie who has had some rough health problems too.  We have gotten to know each other much better over the last few weeks.  She has come by on a couple of occasisions to visit and called to share well wishes for Shelbie. 
     She is a school teacher of a 4th grade class and had them color a big mural for Shelbie.  Sunday, she brought it over along with some tasty treats.  It was so fun to see the great artwork from such caring children who have never met Shelbie.  When they unrolled it, it stretched from our kitchen all the way to the back door.  It was such a sweet surprise and really cheered us up.  I appreciate her thoughtfulness a lot!


Big thanks to all those kids who shared their warm thoughts with us and to this great family who made it all happen!

Sunday, December 19, 2010

Second Verse...Same as the first

This time she brought some comforts from home.  Her happy little Sock Monkey slippers

Surrounded in her favorite feel good color- Zebra.  My good friend made the awesome pillowcase cover!  She rested much better with her own blanket and pillow and actually looks pretty good prior to the infusion.  Too bad she didn't continue to look so great!
Yup, another long weekend in the hospital.  Shelbie's infusion went well, Saturday morning went well.  Saturday night...not so well!  I had tried all day to keep the celebrex and loratab on board so that we could stay on top of any potential side effects but by 6:30 our luck had run out.  Still, I kept trying to avoid the hospital.  By 10:30 she was screaming at me in pain and then the nightmare began.  She had run out of patience and longsuffering and I was the only one to receive the fallout.  Even though I knew she was just exhausted and in so much pain, it was still hard to hear those all too familiar words, "You don't even care!"
       I do care, I care too much.  I cared so much that I kept trying to convince her and myself that this time would be different.  I spent too much time in denial and the pain got way out of control.  There goes that mother of the year award I was so hoping to achieve!  Oh well, there's always next year. 
      Anyways, we had the same nurse as last time in ER and she was very helpful.  One of our favorite family doctors was the ER doc, (there are 4 providers at the family clinic where we go and we love every one of them!) He is always really good with the kids and it felt nice to let someone else take over who actually knew what they were doing. 
      Today, Shelbie's platelets are up to 30 which is a nice improvement.  Staying on top of the pain here at home now and so far so good.  I am beat, in so many ways.  I haven't had but 4-5 hours of sleep since Friday night.  I am trying to get on top of laundry, packing the Christmas presents and clean the house before things get crazy around here.  We are still planning to leave this week to go home but I have arranged for some friends to stay at the house while we are gone so I need to get things shaped up for them.  Hopefully, Shelbie will steadily improve, the boys will stay healthy and I can shake this crazy virus that has settled in. 

Friday, December 17, 2010

Deep thoughts...

Well, didn't sleep hardly at all last night, tried but Shelbie has been so kind to share her rotten cold with me so that has been pleasant, then all the worrying about today, tomorrow, next week, next month, next year.....At some point, I need to get an emergency shut off switch in my head so I can just stop all the overtime spent in thinking. 

Last night, I was catching up on emails from the SDS group and other families I follow through their blogs.  Three SDS kids go to transplant the first part of January.  One sweet boy was suppose to start Dec. 20 but his donor was in a car accident so he will have to wait a little longer for his new marrow.  Hopefully, he will be able to stay strong until the donor has recovered enough to undergo the procedure. 

Another family I read about has a son with leukemia.  He has been battling it for a year now and has just under two years of chemo left to go.  I had all sorts of feelings and emotions come over me as I read about this family and their experience.  They go to the same Oncologist we do.  She was raving about how great the nurses are at the clinic and mentioned the nurse who I had my run in with earlier this week.  They are kind and patient and always doing fun things for this boy on chemo days.  To read her post and compare it to my post about the frustrations this week, you would have a hard time believing we were talking about the same person, same clinic...

At first I felt angry when I read it.  Why couldn't they just be nice to us?  Why is it that everytime I try to go through the right channels to talk to our doctor, we get the run around?  Then the most horrifying thought of all.  Maybe if my kids had cancer we would be treated better.   I know, it's an awful thought to even consider.  Of course I don't want my kids to have cancer but cancer is something everyone knows and hates!  The nurses at the clinic know cancer.  They know how it acts, they know how their patients feel, they know it is the most horrible thing in the world to have especially when it happens to a kid.  They know how the blood will react with each poisoning treatment of chemo.  They know cancer in and out.
        I just want someone to know my kids inside and out the way they know cancer.  Here in lies the problem and I guess it's my problem not the innocent nurse on the other end of the phone who was just trying to do her job regardless of how well I thought she did it.  It gets really lonely being the only one to advocate for my kids.  I guess I am a little tired of doing this all alone.  I am the one who has to stay on top of things, stay in step with the doctor so we don't miss anything. I feel like everyday is a fight and a worry.  Every sniffle, sneeze and strange ache has to be considered as a potential threat to the life of my kids.  No one else understands what this feels like, not even the best trained nurse who knows everything there is to know about cancer but we don't have cancer, we only have SDS.   I like to think that someday this will change and the voice on the other end of the phone will be compassionate and helpful and sometimes on rare occasions, it is.  But while I know SDS inside and out and hate it, no one else does so how can I really expect anything from anyone but to recognize that they are doing their best?
       In the meantime, here we sit in the hospital.  Shelbie's platelets are at 5 and the IVIG is streaming into her veins.  She is sleeping well, the premeds have knocked her out.  She has a low grade fever and her blood pressure is super low but other than that, no other side effects yet.  I am pretty tired, took a 10 min nap earlier this morning and that felt good.  So glad that Spencer is feeling well and is my big support at home.  I try not to give him too many responsibilities because I don't want to steal away his youth but I do appreciate him taking Sam to school, picking him up and running a few errands.  Sam has also tried to be patient with all this running around.  He is wired a little differently from the other two kids and anything that deviates from his regular schedule produces a lot of anxiety for him so I appreciate how hard this is on him too.  I have the sweetest kids, I wouldn't trade them for anything...not even cancer!

Thursday, December 16, 2010

Infusions tomorrow

Well, our doctor called me tonight, he was able to get the information he needed on the pending tests and since her counts have dropped so quickly, she will be in the hospital tomorrow for IVIG.

 I felt so much better after talking to him.  Just to clarify things, I really like him and I think we work well together as  team.  He is always willing to explain things 50 different ways until I understand what is happening and I appreciate that quality in him. He is also happy to listen to my thoughts, worries, anxieties etc and we work through them together.  Just wanted to be clear that I have never had a complaint about him.   He tries to stay up on SDS which I also appreciate.   I hope my last post didn't reflect anything poorly about him, I will say that he still has some staffing issues to consider though.  So, we spoke briefly about the next few days and we will not do surgery before Christmas, it will more than likely take place after the holidays.  Relieved about that as well. 

Tomorrow will be a long day.  We will try doing IV fluids before the infusion and run it slow again to see if we can avoid the nasty side effects.  It's hard to predict what will happen, Shelbie is sick tonight, her cold has gotten much worse just in a couple of hours so hopefully that will not put her at a disadvantage.  In a sense, it's a big relief to get this taken care of before the weekend but I am still not looking forward to it.  Shelbie of course is handling it okay or at least seems to be.  I guess that is to be expected.  The patient always seems to cope better than the mom looking on, wishing so much I could stop this all from happening.  I can see that she feels better mentally knowing something will happen to get her out of the danger zone even if that something is not very pleasant.  So here we go again...deja vu!

Tuesday, December 14, 2010

Frustrations

Today has not been without it's frustrations.  I often think about all the things I think would be cool to do.  One of those things I would love to do is gather all the doctors in the country together and let them know what it feels like to be the patient or the mother of the patient.  The first thing I would tell them is that their Secretary will make or break them as a doctor and their practice.  Secondly, their nurses are the key factor in my decision to stick around as a patient or find somewhere else to go regardless of how great the doctor really is.  Third, some things can't not be discussed with a nurse or secretary so get on the phone and talk to me!

I have had to deal with all three nuisances today and it really irks me.  I know I should be more patient but I am tired.  A doctor generally has no idea what it's like to live our life.  They don't know what it's like to be the mom, trying to keep a sick kid calm.  They don't know how stupid and unprepared I feel because I only understand one third of all this stuff and if they get all medical on me, then we get lost and anxious because not knowing or not understanding something leaves me feeling powerless. Yes, knowledge is power.  Power in the sense that we have hope, something to hang our hat on, keep our feet grounded instead of our minds spinning things to the worst case scenario. 

After finding out Shelbie's platelets are dropping low again, well below normal, I called to our doctor's office.  I asked the secretary if she could have the doctor call me, and here is the run around I get.

" Well, he is busy all day, he won't have time to call you but maybe tomorrow." 
Don't speak for the doctor, give him the message and let him decide if he can or should call me back...."This is very important regarding Shelbie and her low platelets again, we need to know how to move forward with this."
Big annoyed sigh, "Well, I guess I can pass this along to a nurse."

Arrgghhhhhhh..... sit and wait....the nurse calls back....
"I understand your daughter has low platelets again.  The doctor is waiting for a test to come back so he isn't going to do anything until the results are in next Monday."
"What do those test results have to do with the fact her platelets are low other than it decides if she gets a port or not?  Regardless, she still needs an infusion and we are leaving the country next week so the sooner the better.  I already discussed this with the doctor last week."
"Well, he thinks there is something more serious going on so you will have to wait."
"Serious like what?  This is the first I've heard this."
"I don't know, that's just what he said.  I have had a lengthy discussion with him."
"If you had a lengthy discussion then what is he talking about?"
"Well, you'll have to talk to him about that."
"Okay, so when can I talk to him?"
"You'll have to wait until next Monday when the tests are back and then he will do the IVIG."
"We leave the country on Wednesday by plane.  I need to know that her counts are stable and she is over the meningitis side effects before Wednesday and that won't happen if the infusion doesn't even take place until Monday afternoon.  In the meantime, what are we suppose to do in a day when her platelets are at 1 or 0?"
"Well Ma'm, there is no way her platelets are going to drop to 1 or 0, that just doesn't happen. And aseptic meningitis is such a rare side effect, she will be fine."
About to blow my friggin top but trying really hard not to let this nurse have 42 years of  pent up anxiety and anger "In our world, it happens all the time!  It happened three weeks ago...1!  A platelet count of 1! It happened every other week 3 years ago and 5 years before that! And, every time she gets IVIG she has the meningitis side effects, EVERY TIME."
"I'm sure it wasn't exactly 1 but she isn't having symptoms so she's fine."
"Have you seen her?  She has broken blood vessels all over her stomach, that's not fine... Ya know, I have the doctors cell phone number so tomorrow when she is at 1, I will call him on that number.  Thanks so much for your help." Honestly, I was using my sweetest voice ever then quickly ran to the garage so I could scream in my car. Even now as I type this, I want to gnash my teeth to powder.

Seriously, life is hard enough without some know it all nurse who thinks she can guard the doctor like he's some Hollywood star.  He's just a guy with a degree.  Our world famous doc in Seattle is far more accessible than any local doc...just saying. It's not like I was calling to complain about a sore throat!   If he thought there was something more serious going on than what I have been led to believe then that is just wrong for me to find out from some nurse who we have never met and has no clue what is going on.

 It's the little things like this that really make this unbearable!  I am going to need a moment of zen, realign my chakras and do a lot of meditation to recover from two lousy hours today that could have been prevented with a little better communication.  I hate letting myself get so annoyed but I have reached the end of that proverbial rope!   screaming myself to sleep now.....

...Not Ready!

Mentally not ready for another weekend of infusions, meningitis, blah, blah, blah.  Shelbie opted out of blood work yesterday as we normally do and went in this morning instead.  We didn't even guess the counts which has become our traditional fun while we wait.  I actually had no idea what to expect.  I think I had probably convinced myself that they would still be in the normal range and we would not have to do this again.  Platelets are at 64.  She has another cold so her white cells are elevated to 3...still very low but elevated for her! 

So, now what, you ask?  Well, we are awaiting one test that will measure the levels of her Immunogamma Globulin.  If this is low, then we can expect surgery to place a catheter in a major vein just up from her heart with a port under her skin so that she will have an easier time getting the medications and testing she needs.  This also means that treatment will be every two to three weeks for a very long time...a very long time!  Everyday we go to the hospital is a nightmare anymore, she is running out of decent veins from which to draw from.  She looks like an addict, bruises all over her arms and now with low platelets again, it's worse.  At any rate, these tests won't be back until Monday so the doctor is debating what to do in the meantime. 

We have made plans to go home for Christmas but we will not be able to go if Shelbie is not somewhat stable.  Having the infusion sooner would be ideal so we can get the side effects taken care of before trying to get through 2-3 airports next week.  For today, we have to be patient.  Be patient, oh what fun that is.  I am so tired and never prepared for the inevitable but as in all trials we come upon, we will grin and bear it or at least front our way through it.

Sunday, December 12, 2010

Are you ready?

This week, I heard someone ask Shelbie if she was ready for whatever was coming her way?  She nodded yes.  I can't seem to get that question out of my mind.  What would my answer be if the question had of been asked of me?  I am afraid I would have had to say "no".  I try to be prepared for 'the worst case' but when the worst case happens, I always feel blindsided.  I'm not sure you can ever be prepared for all the emotion, fatigue, frustration and confusion that comes with any trial though we try to do our best.  When we leave the walls of our home, we try to front our way through but that can often be quite a disconnect from the wrestling that takes place with a situation on any given day inside our home and hearts.  It's just not that easy to be ready.

I guess I find some solace in remembering how I have handled the worst things that have happened so far.  I always thought the worst thing I would ever have to face was being divorced; single and all alone.  It felt hopeless for me to make a living and support my kids.  Nearly 6 years later, I'm not the best provider financially but I have survived and aside from moments, I have done pretty good for myself, in fact I have probably surprised a few people! 

Losing my job was the next worst thing I couldn't imagine surviving.  Ask a few close people how I handled that news and they will tell you I did not handle that first week with much grace.  It seemed impossible to handle and overwhelming to know how I could manage financially.  It's been almost 18 months and I am still trudging along...albeit very tired, but still trudging. 

So, now to our current situation of poor health and other personal things I haven't mentioned, it's hard to imagine being ready for anything worse though I'm pretty sure there is more to come and overcome.  No one these days will escape the worst thing I'm afraid.  I have learned one thing, each trial we go through, prepares us for the next one.  I guess that's where the preparation lies.  Whatever comes next, I have to believe I have already received all I will need to get us through. 

We are anticipating a big week.  I should hear on the kids' mitochondrial testing.  The results have been back for nearly two weeks but the doctor has been at Hematology conferences and she said the results were very complex and wanted to spend more time before discussing them.  This is week three of the IVIG infusion for Shelbie.  The medication generally lasts 3 weeks so we could see a crash of the platelets this week.  Her big problem the last few days has definitely been her hemoglobin.  It is so low that she can hardly do a thing.  One 1/2 hour outing sends her to bed for hours.  Her white count is nothing to speak of either so it's been challenging.  The third thing we are looking at this week is her IgG levels (immunoglobulin)  If that level is low, then the option becomes to place a 'port' in Shelbie and do IVIG infusions indefinitely, maybe the rest of her life.  The port would allow a less painful way to do the infusion and take blood but requires a surgery to place the catheter.  Lots happening this week, should prove to be very interesting...as if we can stand anymore interest in our life!  ;-)

Thursday, December 9, 2010

Ear, Nose and Throat

Just because one kid is sick, doesn't mean the others take time off.  We spent the afternoon at the Ear, Nose Throat doc.  Spencer has such intense allergies and so many things he is allergic to that he will need to undergo more specific testing before they can start the weekly injections to try to control his allergic reactions.  He is less than thrilled about this so we will wait until right after Christmas. The testing will involve a series of injections and last 3-4 hours and leave him feeling pretty sick so it won't be too fun.  On top of that, it will take place the day after we get back from GI testing in Boise.  I planned it then because he will already be missing a few days of school so what's one more that week?

Sam also saw the doctor but there is nothing they can do for him.  He suffers much like a CF kid does with a thick, stringy mucus that his body has a hard time managing.  It's not as bad as a CFer but still a nuisance for him.  I wasn't sure that SDS kids could have the same kind of struggles with mucus as those suffering with CF so that will be something I will have to look into.

Shelbie really needs to have her tonsils out but in light of the recent problems with her, the doctor won't touch her with a 10' pole.  Here is the rock and hard place for Shelbie.  Oncology says that each time she gets a virus or bacterial infection from here on out, it will aggrevate her ITP and cause her platelets to fall so, it's like she is a walking time bomb.  The ENT believes that she is colonizing bacteria in her huge tonsils and perpetuating infections, sore throats and colds.  All these issues are creating a vicious circle of illness.  It' just something that we will have to get use to yet try not to get all paranoid about it. 

I did not escape the bad news today either.  I have had issues with hearing loss for some time now.  He diagnosed me today with Otosclerosis and possible Menieres disease.  Otosclerosis is a hardening and calcification of the bones in the inner ear.  It is progressive and leads to total deafness.  Surgery is an option but comes with risks and may leave you deaf anyways.  It is a genetic disease and is the leading cause of deafness in young adults.  Menieres disease doesn't have a cure either and causes dizziness, ringing in the ear and a fullness in the ear with pain.  I have all of these problems from time to time.  Our plan is to recheck my hearing in 6 months.  They will know by the hearing tests when it is time for surgery.  In the meantime, I get to buy myself a new ear....a hearing aid.  Merry Christmas to me!  That's just exactly what I've always wanted, a shiny black hearing aid with blue tooth!  They've come a long way.  I guess I better brush up on my sign language! ;-)

The more I get to know families who have children with SDS, the more I discover the problems the mothers have with their health.  I know a handful who have similar issues with arthritis and so on that I have.  I guess it makes sense, if I have passed on such horrific genes to my kids, then I must have some issues myself.  Genetics is so interesting.  I must have been the lucky one because my siblings are pretty healthy.  Oh well, better me than them.

Wednesday, December 8, 2010

On and on

A strange thing happens when we go through stuff like we have in the past few weeks.  I seem to manage just fine as we go through the worst of the crisis.  It must be adrenaline that kicks in and keeps me going because as soon as the initial worry passes, I drop off like a fly in November. 
     Today has been the hardest to get through yet; since Shelbie's counts dropped two weeks ago.  I feel like a balloon that has been deflated.  At 6pm I was ready to call it a night.  I don't often feel like this but it always happens after we get through something big.
     To update on Shelbie, her counts are still dropping in increments of 8000.  The IVIG has been in her system one week as of this Friday.  It is suppose to be effective for 2-3 weeks so it's too bad that we are already seeing the falling counts.  I have learned a lot about the auto immune process.  The biggest thing I have learned is that it is completely unpredictable.  No one can judge how long this is going to go on.  It could end as fast and as unexpected as it started.  It 's been really interesting to line up all her blood reports and chart out how the counts change with platelets, IVIG and nothing.  I think I am starting to see a pattern that might provide cues to what could happen in the future. 
      The hardest thing is waiting for the shoe to drop.  Of course we try to live a normal existence but it's hard always wondering what will happen next and when it will happen.  I have tried to get her to plan one thing to do each day so she has a purpose to get up in the morning but it's really important that she doesn't overexert herself and that's hard to find the balancing point.  We are still trying to get that right.
      

Monday, December 6, 2010

It was nice while it lasted

Well, just got back from the hospital.  The falling trend of the platelets has begun.  It was really nice enjoying high counts for a week.  As it looks right now, depending on how fast they fall, she will have another infusion sometime towards the end of the week or first part of next week.  We will see the doctor tomorrow and make a plan.  My plan is that when we do another infusion, I want her admitted so that it can run slower than last time and have lots of fluids on board as well.  Taking more time to do it might eliminate a lot of the side effects.  We will also discuss the option of a pic line or port so she doesn't have to get stuck so much.  Today was really tough for them to find a vein.  The chemo she had three years ago has changed the size of her veins and they are really small now.  Couple that with the fact she is covered in bruises and some scar tissue is beginning to form, blood draws are no longer that simple.   We will have a couple of busy days in the next few with lots of appt. planned; Ear Nose Throat, Family Doc and Oncology...

It's amazing to me just how fast ones mind can take a crummy situation and put it in a bubble so that you can move forward each day in something that resembles normal without really thinking about the pending doom.  That is pretty much how the last week has felt.  Lots of people at church asked about Shelbie and what the future holds.  I just rattle off some facts like they really don't matter.  I feel immune from being sad or overwhelmed which is good but creates a bit of a disconnect for other people who are clearly worried and distressed on our behalf.  Then we see results like today and the bubble bursts and we are reminded that this isn't going to just go away on its own.  A wise philosopher once said that we should be like a little kid who plays with bubbles, they don't cry when one bursts, they just set out to blow another one.  Today, we will just have to work on that new bubble to insulate us from the intensities that will surely come. 

Friday, December 3, 2010

Whaa hoooo!

So, Shelbie and I made our daily trip up to the hospital for bloodwork this morning.  Her platelets are at 158!  Awesome!!  We were so excited to see that number!  It was nice to feel the relief of a normal count.
Everyday, we have a little contest with the nurses to see who can come closest to guessing the platelet count. I have won twice this week.  I was only two away today and two away on Wednesday.  Do I know my kid or what?!
      On the downside though, her white count has dropped again to well below normal and her monocyte count is through the roof.  Neither one of those is a good thing but there is not much we can do.  In fixing one thing, we created a host of other problems.  As long as I can keep her virus and bacteria free, she should be okay.  It is promising to see such good counts one week after IVIG.  After speaking to the doc, he explained that the IVIG should stay in her system for 2-3 weeks.  After that time, it is likely that her counts will tank again and we will do another infusion, get sick for a week, have a week or two of feeling okay then do it all over again.  This is a chronic problem rather than an acute one which comes on fast and ends quickly. Of course this is just one scenario, the one we have been familiar all of her life.  It is always possible that God has something different in store for her like stable counts that last for months and no more IVIG for a long while.  It's nothing we can predict...

Thursday, December 2, 2010

I Just Realized...

It is strange when the very realities of life really couldn't be seen before but from nowhere wake you up like a call at 3:00am.  I just realized that Shelbie really is sick.  For the last couple of years, she has become more and more tired, run down and never seems to feel well.  For the last couple of years, I have tried to coax her into finding a life worth living.  I have done that again this week.  In my mind, I think if I can just get her back into a new routine of 'normal' then she will fair better or if she gets off the couch she lays on all day and does something, then she will feel better.  I made her go to work for an hour on Monday and Tuesday.  Tonight I convinced her that going to Idaho Falls with us would be a nice break from the house.  Spencer wanted to find a snow board jacket and I had some returns to make.  It's fun to hang out with my kids shopping.  She decided that was a good idea. 

We all headed in and not even 10 min. into our first store, she is done.  Her head hurts, she's dizzy, she feels sick to her stomach and like she just ran a marathon.  I got really frustrated because I guess deep down, I don't want to see her sick.  I push her so hard because somehow, I think if she is 'doing' something than everything is okay. I have never wanted my children to define themselves by the illnesses they keep.  They are bigger than that! 

By the third stop, she was crying.  "You just don't get it do you?  I am sick.  I feel sick all the time, I can't do the things you want me to do.  I can't walk around these stores.  I just can't but you don't seem to care."
I care but I don't want to accept that she really is sick and she may not get any better than this.  I like to pretend that things are going to get better but maybe it's time to face reality.  I need to stop making things better.  I can't make things better.  I guess that's what hurts the most.  I use to be able to kiss it all away.  I just want to see my kids without the accessory of suffering. 

Wednesday, December 1, 2010

Why Me?

This has been an interesting couple of weeks.  We have had a lot of problems compressed into a short amount of time.  There were moments when I was so exhausted I didn't think I would even make it one more minute but then there were other times, when I have felt more energy than ever before.  So many people have offered their prayers, warm thoughts and I know I have mentioned it before but I can't hardly express my gratitude to everyone. 

Some people have wondered why we have to go through what we do.  There is no easy answer.  It's just one of those things.  We were sent her to be tested, to see if we can truly become a disciple of Christ.  For some, that isn't always an acceptable answer.  There have been a few who suggested we just give up on Christ, get mad.  I personally don't feel like that is the answer.  I just know that by having faith and trusting that God has a bigger and better plan for us, we are blessed beyond measure.  Shelbie asked me the other day what she should say to people who think she should turn her back on God.  I told her she needed to figure that out on her own. 

A couple of nights ago after I was done playing the kids their bedtime songs on the piano and kissing them goodnight, Shelbie said to me, "I was thinking.  If I blame God for my problems then shouldn't I also blame God for the good things that happen and be mad that He is blessing me?"  That is a very profound thought!  If we turn our back on God when things are tough then how can we expect him to bless us when we haven't even tried to trust Him?  Whether we are facing horrible trials or blessings that overflow in our lives, both need to be approached with gratitude, faith and happiness.  I think I finally understand what it feels like to find peace in His rest.  When we yoke ourselves with Him, the burden really is lighter.  I don't know how it happens but it really does.  It takes work to maintain our place in His peace but it is so worth the effort.