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Showing posts from December, 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 …

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 wher…

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 t…


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 …

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!

Second Verse...Same as the first

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 t…

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 t…

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.…


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 unprepare…

...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 w…

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 alo…

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 …

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 g…

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 …

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 …

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…

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…