Tuesday, July 24, 2012

I will never get it

Finally got word back on the iron studies for the kids.  Shelbie will definitely be getting iron transfusions, IV style, Sam is going to try pills (which bugs me a bit) but his studies aren't a whole lot better than Shelbie's and Spencer, who's marrow is also nearly depleted of iron stores had normal  iron studies so he will not get pills or IV transfusion.

How the heck does that work?  I'm at a loss and surprisingly, so is the doctor.  Samuel never complains about having enough energy to do the things he likes to do.  Spencer lately has been dragging around so fatigued and for the past few months, he begs me to do something to give him his energy back.  I was sure that the iron was the problem and explanation for his crummy feelings.  Doesn't look like that is the case at all. 

When I told Spencer last night that he wouldn't be getting iron because he was 'normal' he got pretty upset.  "How can I be normal?  I feel like crap all the time!  This is just great, here I thought maybe life was going to get better for me but this has just been a lousy day!  I'm sick of this."  Then he walked out. 

That hurt. 

Spencer had a bad weekend.  He got sprayed by a skunk a couple of times.  A baby skunk had fallen into the window well at his dad's house so he had to go try to get it out.  Of course, the skunk didn't know he was just trying to rescue him and got pretty mad and puckered up!  I did a lot of laundry yesterday to get the smell out of his clothes. 

We are going home to Canada this week and I really hope everyone can hang in there long enough to get out of here and leave some troubles behind, hopefully leave them behind.  We are going without Shelbie's IVIG and that scares me a lot.  We don't have insurance that covers international hospital trips.  

For today, it's all about survival and trying to understand how the most complicated machine known to man, the human body, can appear to be doing so well on paper in one area while functioning at near 0 in another related area. 
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Sunday, July 22, 2012

Emma Smith - Never Had an Ordinary Day



I love this song and today I want to pay tribute to all the moms out there who carry the weight of the world on your shoulders.  All those moms who care for sick kids, who's children were taken to soon.  I dedicate this to my friends who are struggling, watching their husbands battle cancer, moms facing the end stages of cancer themselves with beautiful children they will leave behind, a friend with Cystic Fibrosis waiting for her second double lung transplant. 

This is for anyone who has anything but an ordinary life. 

Happy Sunday!
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Saturday, July 21, 2012

Psychologically Speaking

Wednesday was our day at the Psychiatrist's office.  We have to go every three months for medication regulation and refills.  Dr. Denny is one smart guy and gets along well with the kids. 

Psychologically speaking, it's been a tough month.  There's been alot going on medically and a lot in all the other areas of my life.  I've been burning the candle at both ends just trying to make things work.  Being tired and stressed is not a great combination. 

I've really struggled as I look for work, to think about leaving the kids for 40+ hours a week.  The reality is, I really need a flexible job.  Someone is sick every single week.  We rarely experience weeks when no one has to go in to the clinic.  Then there is the emotional side, the mother in me that is afraid to leave them in case something happens.  It sounds completely lame, illogical and a pointless.  It's not like they are 3 years old anymore.  I have two adult children and a teenager. 

I had a job interview this week and the only thing I couldn't accept were the hours of work.   I asked if I could work from home so I could be there for my kids a little more.  I'm sure he thought I had little ones and I'm certain when I told him their ages, he thought I was nutty but that's the way it is. 

It's a really hard concept for people to understand.  Dr. Denny has mentioned on previous occasions that kids with chronic illness are incredibly advanced and mature in some areas but in other areas, they are developmentally behind and in some cases even regress to when they were a child.  That may seem strange to some but to me, it makes total sense and I see that happen a lot. 

I asked him if the same sort of thing happens to parents of chronically ill children too.  I told him about my attachment issues and what he said gave me a lot of comfort.  Didn't fix anything but I am going to stop worrying about how dysfunctional I am. 

He said that Fathers with chronically ill kids tend to just carry on with their life and don't expend too much energy on the facts of the illness and in many cases they leave the caring and nurturing to the mother.  (Disclaimer:  I know at least 3 fathers who are not checked out but are seriously involved with disease process and I'm sure there a more.) Mothers on the other hand are the ones who carried the child for 9 months and tried so hard to make sure she took her vitamins, ate the proper nutrients, stayed away from anything that might harm that child and then it's born with problems.  Mother's become riddled with guilt and anxiety that somehow, they are to blame for the health problems. Because of these feelings of inadequacy, they double their efforts to protect their kids from anymore problems but there is no way she can stop the disease and things get worse and she tries harder and harder and somewhere in the vicious circle, she gets to the point where she can't even let them out of her sight.  No one else is engaged in her family like she is so it creates this very isolating and scary situation.

Wow, he just described me!  He explained that all these thoughts happen sub consciously but come out in ways that make people around them go, "HUH?"  It was so good to finally have someone understand me and validate that I am not crazy...Shwachman Diamond Syndrome and Mitochondrial Disease are crazy! My kids were in the room as we talked about this and Shelbie admitted to times when she just wants to be a my little baby again and be held in my arms and rocked.  The boys on the other hand, their developing egos would have none of that.  Things may get a little harder as they are growing up and making the transition from being my child to an adult and there may be periods of regression when they can't make that step into the world.  It's just something we have to work through. 

I think now, when I quiz my kids with not 20 questions but 145 questions as they leave to be with friends, they understand that it is more about my fears and insecurities than it is about trust.  When we understand where someone is coming from, things tend to get easier. 

On this same thought, it didn't help that on Thursday, I decided to go up to Girls Camp for the evening and while I was gone, Sam was hit by a car!  I felt sick that I wasn't there.  He is okay and because of some quick thinking on his part was able to skid the back tire of his bike mostly out of the way but the left side of his body did broadside the car and he took out the guys mirror. The man who had given him the sign to cross somehow changed his mind and floored it.  Sam was already in motion and neither one were able to stop.  The guy continued to drive off and left Sam behind. So, now I'm on high alert until I calm down from what could have happened.  Yes, he was blessed, yes, everything turned out fine but this psychological component is really tricky.  Sadly, not many parents like to talk about this kind of thing. 

This family has a lot of tough stuff to work on.  
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Sunday, July 15, 2012

THANKFUL



It's really hard to keep your bearings in the world of Shwachman Diamond Syndrome and Mitochondrial Disease.  It's easy to trip up on the overgrowth and gnarly roots trying to find their place.  It's easy to get lost in the dark as the storms of chronic illness swirl around you. 

The journey becomes just trying to take that next step but joy just hasn't caught up yet and your only traveling companions are fear and its cousin hopelessness.  Sometimes a little light can be found filtering through the canopy of chronic illness. 

Oh, how I love those moments.  How I wish I could just bottle it up and save it for a day when the journey gets arduous. 

Tonight, a little light filtered into my life.  It doesn't take much really, just a flicker can reignite enough of your spirit, you can go on.  In the light, I could see that I haven't been thankful enough for my life, for the little mercies that make a difference.  Sometimes I'm too busy worrying to see the little things that really do make a difference. 

Spencer is my son that keeps his thoughts to himself.  I never quite know how he is feeling.  Tonight, after going to the Alex Boye concert with a friend, he came home to grab some medication he needed and he was so open and honest about his life.  He is having a hard time.  He's sick every day but wants so badly to pay for his mission by himself so he works hard everyday or he tries.  He keeps getting his hours cut and that is making him feel worried that he won't have money for his mission. His boss is so nice and knows how much Spencer struggles with his health so he is worried about overworking him.

We had such a great talk.  Sometimes the best communication with my kids happens after midnight. It was just me and him.  No amount of money could buy the kind of happiness I felt.  I could feel his heart and know his worries.  It makes me see that being a mom is really the greatest job on earth. 

The amount of faith these kids have was brought to the front of my mind again.  We are a struggling family.  We just want to do the right thing and be together but darn it, we are stuck in a world that requires money as the currency not faith, hope and prayer. Man, if that was the currency, we would be a Fortune 500 Family! 



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Saturday, July 14, 2012

Couch time (aka...therapy)

This is strictly a cathartic post and it's going to be long...a mini novel. I am writing it just to sort things out for myself; vent... basically, I'm having a pity party for myself.  Maybe it's not exactly a pity party but I am pretty stressed out and tired tonight and I am so tired of everything in my life creating a bind of complication.  So, my inner turmoil probably won't be that interesting to anyone so feel free to wait for a more exciting post like iron infusions coming up. That will surely be exciting.

So, I hate Shwachman Diamond Syndrome.  I HATE it.  I hate that it has the gall to make me feel like I can never relax.  I always have to be on my game.  I hate that I have to keep everyone together emotionally and physically.  There is never a break. I hate that the threat of losing my kids is always, every single day of my life looming over my head.  If I'm not worrying about stupid bone marrow failure and the number of abnormal cells invading their innocent, unsuspecting bodies, I am worrying about the rafting trip; what if he drowns, what if he doesn't wear a life jacket.  The visit to the skate park to master a skateboard or bmx bike and see how high they can fly off a jump without a helmet because they that's not cool but apparently being a vegetable is.  I worry about the trip with friends to the city, a night camping, swimming, dating...you name it, these days I figure any activity has the potential to kill them. They hear me say "No", a lot but in the end, I give in because I know they are all activities that are part of being normal but the whole time they are gone, I can hardly concentrate on anything.

People ask me to do something and I often say 'I can't' if it means leaving my kids.  They think I have toddlers or something and when they ask and I tell them they are 20, 18 and 14, I know what they are thinking; "She can't leave a 20 year old alone?" 

It's hard for people looking in to appreciate what it really means for me to let them out of my sight.  They are my life.  They are the best part of my life and I don't want to waste one minute when I could be enjoying them because I don't know how much longer I will have with them.  I hope years, and years but what if it's not?  I can't get past the what ifs. I hate regret and don't want any part of it.

I don't know if it comes with the territory of chronic illness or if it's because I'm single and that makes me vulnerable to lonliness.  Who knows.  All I know is it's becoming harder and harder especially the more their bodies start wearing out. 

Today I had a job interview.  I was excited at the thought of being self sufficient again, to at least have enough to cover the bills and bare necessities.  The company loved me.  They loved my application answers.  When I arrived I had to take a proficiency test and I passed that with 100%.  The guy couldn't believe it.  In all the 9 years he has been doing this, only one other person passed with 100.  He offered me the job after a 2 hour interview. 

Before he got too far into it, he said the pay was only $8.00 an hour.  I can't live on that wage.  The first 81 hours of work would just pay for my health insurance.  The next 81 hours would cover my mortgage payment and that's a month's worth of work right there and I haven't been able to make my car payment, my car or house insurance, my phone bill or internet, medical bills not covered, food, gas and now I'm commuting an hour each day so that means a huge jump in gas expenses, clothing, Christmas presents....the list goes on.  Not only that, now I'm tied up 40 hours a week and if I have to take time off for doctor visits, transfusions, etc, then I'm hooped. 

I am overwhelmed when I think about leaving my kids for this amount of time.  I'm angry that I can't just be a mom! I'm angry that divorce does this to a person who just wants to be a mom.  It's not fair...oh ya, I forgot that my life has never reflected anything resembling fairness.  I am sick at the thought of having to juggle work and the kids health problems.  I will always be trying to make up the hours like I did when I had a real job.  I started work at 4:30 am just so I could take the time to get them to their appointments.  I would work at home until midnight and sleep for 3.5 hours and do it again.  I did this day in and day out for 4 years!  The thought of going back to this makes me want to...well, let's just say I can't even imagine it. 

I won't be able to continue with my physical therapy which has helped out so much.  It's made the pain from my arthritis bearable. 

So, after going through with this prospective employer all the reasons I might just be a big pain of an employee because of needing time off to take care of the kids, he still wants me.  He loves me and to be honest, I have never really felt that valued by anyone before.  I felt proud of myself that I passed that stupid proficiency test.  It felt good to think that a total stranger saw a purpose in me.  My self esteem has taken some huge hits this decade and contrary to how I may act at times, I really can't see any value in myself.   It would be such an interesting job and even exciting maybe.  I would be their online marketing person and work in the test kitchen trying out new recipes for their food mixes.  The owner of the company and the others I met today were so kind and had high morals and integrity. 

I also found out today that the CEO of the hospital has been so impressed with my work so far on the labor and delivery remodel and infusion therapy that she mentioned that she wouldn't mind hiring me there.  It's all sort of hearsay at this point but I think I would love that.  Space planning and designing makes me so happy!  I could do it all day long.  I love it, it energizes me and that's important.  I've been trying to build my design business and it would be sad to give up what I love just because I need a job. 

So, I have no idea what I will do.  The employer from my interview today is calling me in the morning for an answer and I have no idea what to say.  It's tearing me apart. Ugh...SDS just makes everything harder.
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Sunday, July 8, 2012

It's back

Sam's been getting by pretty good since his surgery a few months ago but last night was the end of that.  His inflammatory bowel disease has flared up again and he is back to the nasty, mucus and blood filled stools.  I debated taking him to the ER last night but decided we will try to get through the weekend.  We will be at the oncologist's tomorrow morning so hopefully it won't get any worse until then.

Poor kid, it is really scary for him when this happens.  I can't imagine how hard that would be.  We really need to get to Boise to see our GI doc but it's hard to find a time when we can go and paying for another trip makes me sick.  Maybe they can make an adjustment in his meds and things will turn around. 

You never know when things are going to turn for us, for good or for bad.  It happens when we least expect it.  I thought this medicine the boys were on for IBD would keep them out of harms way but I guess not, unless something else is going on.  It's a guessing game.  Here's to another week of white knuckles.
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Friday, July 6, 2012

When they were little

When the kids were little, it was way easier to lie to them and I was a great liar.  I didn't have to do it very often because they were busy being kids and not really worried about what was going on in their life from a health standpoint.  We went through a great period of time when everyone was pretty healthy. 

Now that they are older and more mature, they realize that there is more to life than what exists in the backyard.  Doctors speak to them and speak in ways they mostly understand.  They have mastered the art of Googling just about anything they want to know more about.  That means, they can read a blood test and pretty much figure out what is going on. 

Earlier this week, I announced that bone marrow biopsies were in and everything was fine.  I was hoping that would appease them and they would become occupied with something else in life.  It's not easy having these conversations with your kids.  At dinner on Tuesday night, Spencer said, "I want to know what your biopsy results were."
"I told you it was fine."
"I want details of the report, it didn't just say 'Fine' and if you lie to me..."
"Well, you know, there were some changes that are not entirely favorable but it's okay."
"Mom, when you buy a new car off the lot, does it keep getting newer and newer the more you drive it?  We aren't stupid, we know we aren't suddenly going to be miraculously better.  Give it to us straight up."

I gave in and shared the details with Shelbie and Spencer, things I haven't even really shared here in depth.  In a nutshell, there are more changes towards myelodysplasia.  We got the FISH (a specific test using dyes and complicated things I have never understood)  studies back which they were only going to do if the cytogenetics looks suspicious.  Well, they had to do them because of the new abnormalities. 

The doctor called me earlier this week and said he wants to do further testing and studies on all three so that is set up for Monday.  Once those tests come back, then some new things will start.   Shelbie will have to have an infusion of iron.  They have to use a special iron and give it IV over the course of a week which means everyday at the hospital for a few hours each day.  I suspect that Spencer will have to do the same thing but I think Sam will be able to take a pill form.  We shall see.  Not looking forward to that. 

That's the latest and greatest.  I am getting worried about Spencer.  He has been getting really dizzy and light-headed and has almost blacked out several times.  It's been going on well over a month now.  Last night, he was helping me drive back from Utah and it hit him hard.  We had to pull over immediately and switch back.  That would have been so scary if he had of passed out at the wheel.  I hope we aren't getting into sugar issues.  Diabetes is the last thing I want to deal with but it can be a common thing in Shwachman kids.  He will be at the doctor next week for that too.
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Tuesday, July 3, 2012

Can you imagine?

Can you even imagine what it would be like raising these kids?  Can you even imagine what a month of medical bills in this family looks like?  Can you imagine how hard it is to have at least one person sick every week?  Can you imagine what it's like watching yet another procedure, another set back?  Can you imagine how it feels to know that there is a high probability that you will live longer than your kids?  Can you imagine doing this all by yourself?

Can you even imagine what it feels like to live in this family?  I'll tell you...it is humbling. 

I never imagined that I would be the kind of person who would be dealt this deal.  Me, the little girl who screamed hysterically when she heard a siren.  The little girl who wasn't allowed to go see my sister when she got her tonsils out or my other sister when she had a hernia repaired because she just couldn't stop crying, it made her so sad.  Now look at me.  I am pretty comfortable in the hospital, it's like my home away from home and the tears don't come quite as easily. 

Can you imagine or even believe that living in this family is pretty darn cool.  No matter what the problem or trial, we laugh.  I would say that we spend more time laughing at the situation than we do crying.  Would you believe me if I said, I wouldn't trade this life for anything?  I wouldn't.

Sure, things are really hard and I would be lying if I said it wasn't sad at times but the lessons we have learned could not have been taught in any other way.  Tonight, I felt an overwhelming feeling of love for my kids.  They are amazing spirits to me.  I just can't believe that I was blessed with such strong kids.  I seriously feel spoiled.  They are my best friends.  There is no one else I would rather spend time with.  Through their trials, they have learned patience and perseverance.  They have learned to trust in God even when it seems that He is no where to be found.  They never stop trusting and hoping.  They have learned to serve and give.  They are grateful for even the smallest improvement, the tiniest gift, a listening ear.  They never ask for too much, they hardly ask for anything.  They never use their illness as a crutch in life, in fact, most days, if you see them out and about, working even, you would never know just how sick and weak they really are.  They just want to be normal, like you.  Can you imagine raising kids like this?  It's pretty amazing. 

Let me share with you just a couple of things that have turned me into a mushy mess of gratitude
 recently.  We finished our basement.  Well, it's almost finished.  Shelbie paid for most of it.  She has been working hard.  At first, we were just going to finish a studio for her but she wanted to finish it all.  As a family, we worked together on all the things we could and had a great time helping this dream come true for Shelbie. It's beautiful and wonderful knowing the sacrifice she made.

Samuel has loved the time he can spend at the gym learning more about his favorite sport, parkour.  It's really expensive.  He has given up a lot of things, you know the creature comforts of an average 14 year old so that he can continue with his classes.  He is always so good to help out in extra ways around the house.  When he sees someone in need, he jumps in to help.  He has really needed new socks.  I haven't had any extra money to buy him new socks.  I felt bad telling him that but he said, "It's okay, I'll just make it work."  We did a lot of washing (I did finally buy some new socks this week and what a smile that brought to his face.)

Both the boys have grown out of their Sunday suits.  Spencer hasn't had a suit for three years, he just wears some dress pants but they don't really fit him.  If I can't even buy socks, suits are totally out of the question.  I have been trying to alter one of Spencer's old suits to fit Samuel but that has been an epic fail.  I think Sam's trousers come up to his knees, it's sort of embarrassing but Sam says, "It's okay, I'll make it work."  Today, when I got home from house cleaning, Spencer said, "Hey, I'm going to go pick up Sam (he was at a friend's house)."
"Where are you going?" I asked.
"It's none of your business." and he left. 
A little while later, Spencer came home.  He had taken his brother to the suit shop to buy him a new Sunday suit.   A brand new Sunday suit!  With his own money. 

Can you imagine what it's like raising these kids?  Can you imagine a month of wonderful experiences that money can't buy?  Can you imagine how great it is to see them supporting each other when one of them is sick?  Can you imagine the number of blessings we receive through all the procedures and set backs?  Can you imagine how a life like this makes every moment we have together so much sweeter?  I can only imagine, it doesn't get much better than this!


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Monday, July 2, 2012

The verdict

What a horrible day!  I feel like I ate a big bowl of crazy for breakfast this morning.  Nothing sets me off more than money problems.  Second to that is the fact that I've been fighting with my insurance company to cover some of Shelbie's bills and my arthritis doctor bill that was over $1500.00.  Then, I cleaned a bunch of houses today and all but one person had an excuse why they couldn't pay me today.  It's so frustrating and I am down to nothing in my bank account which means no bills are getting paid until I get paid.  So, most of the day has been spent in a panic trying to figure my way out of this mess. 

I came home, after a mega sized melt down in my car on the way home from my last cleaning job, to find the kids' bone marrow results in my inbox.  Ughhh.  It's going to be really hard to explain but here goes. 

First off, all the kids had neutropenia, Shelbie and Sam had Leukopenia in addition to a low number of neutrophils.  Neutrophils are immature white cells that fight infection and they don't have very many of those right now.  Not a surprise, they are almost always neutropenic these days and it shows in their blood counts.  I was surprised that they had leukopenia or an overall drop in all their white cells.  None of the kids have any trace of iron in their body!  We keep trying to supplement with iron pills, high iron foods but for some reason, they just don't absorb it and keep it.  We are trying to decide between a special iron pill or doing an iron infusion for all three.  How much fun will that be, three kids up at the hospital getting an iron infusion?  We have to be careful because if they get the wrong kind of iron, it will affect future transplants or red cell transfusions. 

All three have 'empty' marrow meaning they just aren't producing enough of the three important cell lines, white cells, red cells and platelets. I was pretty much expecting this but thank goodness, they aren't to the Aplastic Anemia stage so that is a blessing.

There are a few more abnormal changes that I wasn't expecting at all and in fact have been really caught off guard by.  Sam has dyserythropoiesis. This is an abnormality in the red blood cells and can develop into something very serious.  In one article I read, it said that it can sometimes cause vision loss.  That caught my eye since Sam has been having weird episodes of losing his vision in his left eye. 

It's a lot to take in.  Of course the doctor has his own perspective and calls this 'normal' as far as it relates to the kids and their normal. He tells me not to worry about it. For me, it is not normal because I compare it to what a healthy marrow should be and I am a mom.  I don't want my kids to be sick.  I don't want their cells to start changing and causing more serious problems than what we already have. 

All in all, it's been a really disappointing day and honestly, I am trying to stay positive and hopeful that things are going to turn around for us.  Seriously, it's been one hard thing after another and it's really getting hard to believe that we aren't due for some good news soon but it never seems to come.  I know that God doesn't come to our rescue at the first sign of trouble; He likes to see us work at our problems, have a little faith and trust in Him and then at the last moment, the moment of great despair, He swoops in to help.   Sometimes, I wish I wasn't so strong and stubborn to keep thinking everything is going to be okay because I keep prolonging the great despair moment and quite frankly, I've had enough.  Maybe if I just gave up and quit trying to be so strong, then help would come.  Who knows.  I'm done trying to guess what is going to happen next.  I will say this, I came pretty close to a great despair moment earlier today.  It's not a fun place to be. 

Tonight, we are going to try to enjoy a movie in our new 'family room'.  I made a make shift room in the basement and we are going to set up our cheap projector and eat ourselves into a senseless frenzy.  Sounds like a good time if you ask me and hopefully those bills will have paid themselves, the kids marrow will repair itself, an awesome job offer will be sitting on the step and all will be well when I emerge from a mountain of Oreos and hills of cheesy Doritos sometime after the 4th of July!  Cheers.
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