Friday, July 29, 2011

Sometimes, the questions are hard

Well, the elephant didn't stay in the middle of the room for long.  At about 1 in the morning, it decided to have a seat on my bed.  I don't know if you've ever experienced an elephant sitting on your bed but it doesn't promote that quiet, sleepy feeling you long to have when the sky is dark and the crickets are keeping time outside your window. 

Yes, I was awakened by my sweet Shelbie last night.  She is not the elephant but she brought with her the elephant.  The sobbing, the shaking, "I can't sleep mom.  I need a sleeping pill."
She is so worried about the bone marrow biopsy results and the virus that is running rampant in her body. 

It use to be, when they were little, the questions were so easy or at least of little consequence to the deep matters of life; Why is the sky blue, Why does rain drop, Where do babies come from, Are we there yet?

Now, thanks to a host of defective genes, the questions are a lot harder and my answers are even more lame than trying to explain to a 3 year old where babies come from; that's the easy question to answer now.  Why don't I ever get a break? Why do I have to be sick so much?  Why don't other people have a hard life like us?  Why is everything a struggle? When will I be able to live without looking over my shoulder to see trouble chasing me?  Where is God, I can't find him in all this?  It's just not fair.

As hard as it was to hear those questions, to see her hurting so much, it was better to talk it out than pretend everything is rosy.  I didn't have answers for most of her questions but I do know that God is not far, He never is.  He may not always be where we think he should be but he is close by working on His plan for us. I tried to help her recognize all the things He has done for her this past month and she began to see more clearly that He is blessing her, teaching her and helping her become the kind of young woman He needs her to be and that process is going to hurt and it's going to be uncomfortable sometimes but in the end, it will be worth it. 

I don't know if she has the beginnings of leukemia.  I like to think everything is going to be okay and if it's not, that will be okay too.  Every trial we have prepares us for the next so in that process, we are never given anything that we haven't be given the tools to manage. 

She calmed down after awhile.  I offered to wake up Sam so we could have a PayDay marathon, watch old movies from the 90's all night and eat popcorn and drink Pepsi just to keep her mind in a different sphere than the dying one.  She decided that maybe she should try to sleep but we made a plan to stay extra busy today and this weekend so she has no time to worry.  That's going to be hard too but it's the only way to get through crappy stuff like this.
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Thursday, July 28, 2011

The Elephant

A few days ago, we had this amazing thunderstorm blow through.  It was the kind of storm that was preceded with a very eerie calm.  The sky was mottled with shades of yellow, blue, orange and grey.  The sun was shining but filtered by billowy , building clouds.  The air was cool and the smell of rain was prominent yet other than the strange colors in the sky it was hard to imagine that a storm of such force was about to unleash.  Not even 10 minutes later, the sky was pitch black and rain poured down from the claps of thunder and jags of lightening. 

That's what today has felt like, a big storm brewing!  We had a little fun before going to Shelbie's Oncology appointment but now the blue sky seems to be fading and there is a feeling of unsettling calm.  I'm not sure if I am having the 'mother's intuition' feelings or just getting worked up about nothing. 

For a little good news, Shelbie's platelets were way up!  220!  Up a 100 from the end of June.  Her white count is still high and so is her red count and hemoglobin.  At first, I wanted to cheer but that was quickly muted by the fact that since the day she was born, her white count has never been normal or even close to normal unless she was sick.  I asked the doc what his take was on it.  He asked a few questions but didn't really have an answer.  As the appointment went on and Shelbie talked about her daily nosebleeds that last for an hour or more, the extreme pain in her nose and sinuses, the ear aches, fatigue, heart pains and her list went on, it became apparent that she is not doing as well as it appears to you or me.  She is the master of disguise. 

So, the consensus is that the lousy eye virus she had nearly a month ago has spread to her sinuses.  He was saying that there are only two treatments for this because the danger is that it will continue to spread throughout her system and since she has no immune defenses, could become life threatening.  He told us of a patient awaiting transplant but had to be hospitalized in Salt Lake for the very same problem!  That wasn't comforting!  One of the treatments is IVIG which she has done plenty of times before but seems to be the lesser of the evil treatments.  The other option, which the lady in Salt Lake is getting has side effects that we are not willing to take on and she would have to be admitted to the hospital for a few days.

After hashing through all this, he decided he wanted to wait a couple of weeks and see if she will kick it soon.  Okay...I guess, but I'm not sure why we are waiting when it's been over a month of sickness for her and the last thing I want is for this to get out of control. 
He asked a few more random questions, we collected more prescriptions and were on our way.  Once we got in the car, Shelbie asked, "Do you think I have leukemia?" 
Oh good grief, I don't want to go here even though the thought has crossed my mind recently too. "I don't know."
"I think I have leukemia."  We let that heavy thought sink in uncomfortably deep and not another word has been said but it is definitely the elephant in the room, those eerie clouds just before the pouring rain.

Those strange questions he asked were in the hunt for leukemia. The fatigue, nosebleeds, excessive sweating, increased white count...but it could be a million other things too and jumping to conclusions does no one any good!  It could simply be this virus wreaking havoc on her fragile immune system.  Here we go, another weekend of waiting patiently, trying to keep happy thoughts afloat in the center of our minds while we dance around the elephant taking up way too much room in our lives.  I know I've said it before but I'm going to say it again...I hate this!
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Wednesday, July 27, 2011

A picture is worth a thousand words

Well, it arrived.  The Mito Cocktail came today, AWESOME...and by that I mean, CRAZY and by that I mean, SERIOUSLY? WHO BUYS MEDICATION BY THE CASE LOT?    Ahhhhh, we do, we do now!




You might be thinking this supply will last us a few months...try 5 weeks roughly.  Shelbie took her first dose just a bit ago, Sam, well, he is not a happy camper tonight.  After a big melt down of alligator tears and the standard rhetoric, I hate my life, I hate being sick, Why do I have to be sick?  When can I just be normal?  I'm not taking more pills, I don't care if it makes me better or not!

So, I did what any wise mother would do, I bribed him.  I hope the morning dosing will go better.  Sam has some unique challenges when it comes to helping him understand things like this.  It's really hard for him to process the 'why's' of it all. 

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Saturday, July 23, 2011

4 weeks

Well, it's been 4 weeks since the kids had their biopsies and no news! Thank goodness for distractions cause I am just now starting to get a little nervous in anticipation of the results.   I guess a quiet, slightly stressful weekend will do that to you. 

I guess the anxiety comes because this is not a typical length of time to wait so what does that mean?  Could it be that our doctor is just out of town enjoying Disney with her kids or is she working feverishly to figure out what to do now because the results were unfavorable?  Is it time to get serious about looking for donors, is there going to be a move in our near future...the speculation goes on and on. 

I know I need to practice what I preach and try to stay in the moment.  I saw a quote today that said, "If you are depressed, you are living in the past.  If you are anxious, you are living in the future.  If you are at peace, you are living in the moment."  I'm gonna say that I am all three this week and yes, I am spending a great deal of time in the past, worried about the future and I only catch glimpses of peace. 

While I'm stuck in the future, the Mito Cocktail starts Wednesday.  I am both overwhelmed to think about that and excited curious to see what effect, if any it has on the kids. It's shaping up to be an interesting week.

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Thursday, July 21, 2011

Hmmm...

Things have been quieter this week, only one trip to the doctor so far!  Happy about that so now I have some time to do a little thinking about things and believe me, there is no shortage of deep thoughts right now. 

I haven't been feeling awesome for the last several months and just before leaving for Seattle, found out that my body is just not functioning as it should be.  Mainly, my ovaries have given up their job to keep my hormones in check.  I'm sure that doesn't explain all the discomfort I continue to feel but it's a start. 

This news came at a very significant time.  When we met with the specialists in Seattle, I mentioned my current problems because they are doing a lot of research on our family and have instructed me to keep them up to date as changes in my health or family health occurs.  I let them peruse my lab reports and such.  I also gave them a little history on my family as well.  The neurologist was intrigued because ovarian failure, as he referred to it is often seen in the mother whose children have mitochondrial disease.  According to the Oncologist, it is a common sign of bone marrow failure too. 

So, they advised me that there seems to be a correlation between ovarian failure and breast cancer.  Well, I've already had three lumpectomies so I inquired about what my odds look like of getting cancer.  The doctor said that it would be likely but ..."it's not a big deal, usually not fatal so you just do the chemo, radiation and you'll be fine."

Seriously?  He was serious.  So, I wonder, do I really want to wait around for cancer to strike or cut to the chase, (no pun intended) and get rid of those malfunctioning parts sooner than later?  What would you do?

If I was alone, no kids, no one to worry about, I would just sit and wait but I'm not alone and I have a huge responsibility to take care of myself so I can be around to take care of my kids.  It's upsetting to them when I get sick, even a bad cold.  They worry, they wonder what will happen if I am ever gone from their lives.  I wonder too.  There is no one else. 

Obviously, I need to get some professional advice because it's a big decision to make alone but these are the kinds of things that fill my mind.  It really doesn't end.  Chronic illness creates a network of concerns even on the good days when everyone is feeling pretty good. 
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Tuesday, July 19, 2011

Ouch!

I find myself saying "Ouch" almost everyday.  First of all, my head is still killing me from where I slammed into the car door last week.  Turns out I mashed a nerve in my head and boy, is that painful.  When it isn't hurting, it feels like worms crawling around inside my skull and I have no feeling on my scalp from the forehead all the way to the back of my head.  Sometimes, I just get these shooting, paralyzing pains that make me want to put my head through a brick wall.  I know, it sounds drastic but it really hurts. This is the first time I have experienced nerve pain and hopefully the last.

So, compounding my already aching head is the bill I received last night from Seattle Children's.  Of course, insurance is still pending and it will take a bit to see how things shake out but the grand total just for one kid was....$26,000.  I have yet to receive the bills on the other two but I'm pretty sure they will read more of the same doom and gloom. Can you imagine?  How in the world can it all add up to so much?  When it's all said and done, we spent more money in 10 days than I have made in the last three years or more combined!   It kind of puts things in a discouraging perspective when I consider the jobs I am applying for only pay $12 an hour, maybe $14.  Huh....so much for the American dream!

In other news, it took a lot out of me this morning to finally order the Mito Cocktail.  I tried to buy the stuff we needed locally but couldn't find most of what I needed. I did buy one bottle that will last the kids just over a week and it was $25.  Thankfully, I found an online pharmacy with free shipping and discount coupons so I ordered from them.  I am expecting about 13 bottles of stuff to arrive early next week and that will last the kids not quite 6 weeks.

It took a lot out of me because it is just a monster size dose of reality I didn't want to swallow today.   I did receive some notes from our Neurologist/Mito doc and he does not paint a pretty picture in his review of our visit.  I learned a lot of things that he didn't mention while we were there so there is even more to process.  I will post more about results at a later time.  For now...just trying to take it all in without losing my mind.  
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Sunday, July 17, 2011

Surviving

I found myself drawn to this very interesting book called the Survivor's Club.  The author, Ben Sherwood explores the world of survivors; survivors who have beat the odds from a plane crash to being stabbed in the heart to some of the worst health crisis.  With the help of science, he tries to figure out who survives and thrives and who gives up and dies.  It's been a very intriguing read.

The author talks about some intense military training he was engaged in.  At one point, he was strapped into a metal contraption and dunked to the depths of a deep pool. After sinking to the bottom, he has to go through a series of tasks and find the escape door in order to reach the surface of the pool.  He talks about the panic he felt, the disorientation, the turmoil at trying to escape.  He remembers the rules he was given before the exercise in order to survive the test.  The military believes these rules will assist anyone in any trial to survive. 

The first two rules are as follows:
1. Maintain your reference point- if you keep your reference point, you will never be lost or confused.
2. Wait for all sudden and violent motion to stop


The military also states that no matter what the trial, survival is an action of mentality, how you think and perceive the situation.  Here's what they believe...
1. Crisis is inevitable and they anticipate adversity
2. When a challenge comes, they observe and analyze the situation, devise a plan and move decisively
3. If things go wrong, they adapt and improvise
4. If they get overwhelmed, they recover quickly
5. They know how to wait for the worst to end.  "They understand that even misfortune gets tired and needs a break"  Sometimes doing nothing can mean doing something.  Embrace the paradox.

As I thought about these rules, I kind of think there is some truth to them.  The only times I panic is when I let fear take over instead of faith.  In other words, I lose my point of reference.  I also find myself just trying harder and harder to change things I really have no control over instead of waiting for the chaos to stop, then devise a plan, a solid plan to work my faith. 

Seattle was a great example of things going wrong or at least not the way I wanted them to go.  I have spent the last three weeks trying to underwhelm my overwhelm!  Now, it's time to recover.  The violent emotions have stopped and I have spent the last week and a half doing nothing.  I need to make my plans and get some rest both physically and mentally.

This week starts the week of planning.  Shelbie needs to get in to see the Oncologist this week.  She has had a nose bleed every single day for the past 8 days or more.   She is still fighting some sort of virus and they need to change her antibiotic to something different than the one she is on and we need to decided if it's time to start the IVIG infusions AGAIN!  Yuck!

Spencer will also be seeing the doc this week since I am pretty sure he has torn his rotator cuff.  He was wakeboarding two weeks ago and doing all sorts of jumps and flips on the wakeboard and one jump didn't go so well and he got flipped around and roughed up.  He came home in pain but as the week as gone on, he loses his strength in his shoulder whenever he tries to lift things or twist his arm in certain ways.  If it is torn, I want the surgery done before school starts.

So...this week is shaping up to be a busy one but one that we will SURVIVE!! I also anticipate that I will hear from our Oncologist in Seattle on the kids' bone marrow biopsies.  I have really mixed feelings as I wait.  On one hand, I hope she says it's time for transplant because then maybe Shelbie would have a shot at a more normal life, that is if she survived transplant.  On the other hand, I don't ever want to have to watch my kids suffer through a transplant.  That may just be the straw that would break this ol' camel's back. 
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Friday, July 15, 2011

Bring on the Rain

Funny how the tiniest little thing, from out of the blue can set off a flood of memories that stops you in your tracks.  Has that ever happened to you? 

There I was in my kitchen, cleaning, cooking, the usual tasks and coming from the direction of the kitchen table, I hear 'our' song.  I stopped, turned to Shelbie and we both scrambled to close our gaping mouth.  It's been 8 years since I heard that song, Bring On The Rain, by JoDee Messina. It was a song my kids and I listened to every night.  The words described so well what life was like for us.  With the flood of memories came the flooding of tears.  What a year that was...8 years ago!  A year I hope to never experience again.  

Life was not easy then.  The kids were sick, I was sick and separated from my husband and it seemed that the problems would never end.  Somehow, the words to this song, held a promise of better days and so we held on to tomorrow, embraced the rain and kept fighting our battles. 

Bring On The Rain" Jo Dee Messina(feat. Tim McGraw)

Another day has almost come and gone
Can't imagine what else could go wrong
Sometimes I'd like to hide away somewhere and lock the door
A single battle lost but not the war ('cause)

Tomorrow's another day
And I'm thirsty anyway
So bring on the rain

It's almost like the hard times circle 'round
A couple drops and they all start coming down
Yeah, I might feel defeated,
And I might hang my head
I might be barely breathing - but I'm not dead, no ('cause)

Tomorrow's another day
And I'm thirsty anyway
So bring on the rain

I'm not gonna let it get me down
I'm not gonna cry
And I'm not gonna lose any sleep tonight ('cause)

Tomorrow's another day
And I am not afraid
So bring on the rain


It's been raining for awhile in this ol' life of ours and not much has changed but I have never forgotten that tomorrow is another day and somehow, it always works out. God figures out a way to make things work.

I've had a lot to keep me distracted this week and now that my house is quiet, the kids are all off in different directions doing their thing, I feel just a little lost, a little tired, a little lonely but, I'm breathing, not dead, and still...a lot blessed.  It's so weird to me how you can feel such an array of feelings all at the same time!

 
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Sunday, July 10, 2011

Brilliant Idea...

This week, Sam leaves for Scout Camp.  I'm not entirely thrilled about him being gone for 6 days but for the first time in a long time, he is excited to go.  Of course, I will be home worrying about what he's doing, how he's feeling, if he remembered to take his meds and then all the 'What ifs'...

It was a chore to get all his meds together and ready to go.  I didn't have a pill box big enough to hold everything and besides, pill boxes don't travel well.  Inevitably, by the time the gear lands at the campsite, the lids have flipped opened and pills are laying in the bottom of the duffel bag.

I had a brilliant idea to package them with my food saver.  It was a little more time consuming but I love how it turned out.  Sam will only have to worry about grabbing two packs for his morning meds, one for lunchtime meds, one for dinner meds and one for bedtime meds and one pack that contains his 'as needed' meds.  The best part is, they are also waterproof!  I think I may do this for trips too... Now I just pray he remembers to take everything when he is suppose to so that old body of his keeps on ticking this week like a well oiled machine.


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Friday, July 8, 2011

Spencer

It's been really interesting to watch Spencer these days.  He seems tired, somewhat depressed, bored, not feeling well but at the same time, very proactive.  It's has caught me a bit off guard.  Not the tired, depressed, sick parts but the proactive parts.

Our appointments were long, very long and sometimes our meetings with the doctors would last up to three hours.  After about the first 15 minutes, I figured the kids were not paying attention anymore, just playing on their Ipods.  Turns out, Spencer was paying attention.

His friends and his friends' parents have been asking him over and over what was wrong with him, what the doctors found out and so he has been sharing information.  Every night, he brings up ideas on how he can feel better, ways he can take better care of himself and vitamins and stuff he thinks might be of good use to him.  Tonight, he said he met a guy who claims he can reverse the damage done by Ankylosing Spondylitis, the disease that I have and the same one Spencer most likely has.  He was really excited to share this information with me, his whole face lit up. 

I'm really happy that he is taking an interest in his health and trying to find ways to help himself feel better but deep down, I know he is still a little worried about his future and that has me alot worried!   I'm glad the doctors had a promising tone in their voices and spoke directly to each one of the kids urging them to not get bogged down in all the problems but to realize all these diagnosis' means they will be able to help their quality of life improve.

So, why am I still worried about him?  Well, he has been more down than usual and he has been taking a lot more chances lately when it comes to his activities like skateboarding, biking and now wake boarding.  He went with a friend wake boarding a couple of days ago and was practicing flips and all sorts of crazy tricks.  I just worry that he will be a little too reckless and get in a serious accident but he is sick of hearing me harp on him.  He's already informed me that next week, he is staying with a group of friends at a cabin in Island Park and they will be water skiing all weekend.  Yikes....7 boys 17-19 in age...there's going to be a lot of competition and peer pressure to be 'cool' out there on the water.  I cringe every time Spencer tells me he is not going to live life being safe.  If he is going to die sooner than most, he wants to die doing something he loves rather than from his diseases. 
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Being home

It's been a crazy whirlwind of activity since being home.  I have watched the kids take their turns at having little meltdowns.  I think since we are out of the 'pressure cooker' of doctors and testing, they are letting off a little steam and frustration.  Well, maybe I should correct that, we are sort of out of the pressure cooker. 

The week has been pretty much just as I thought it would be, lots of distractions that just keep me from processing anything very well.  Some of the distractions have been along the lines of mundane like laundry, paying bills with money I like to pretend I have, running to the pharmacy, running to the doctor, running back to the pharmacy, running....you get the picture. 

Shelbie's eyes continue to be a problem of sorts.  I finally took her in to see an Ophthalmologist yesterday and we finally have a name for the crazy eye infection- Epidemic Keratoconjunctivitis.  You never want to see the word 'Epidemic' in front of an illness your kid has.   It is a virus that is super bad and super contagious.  It typically lasts more than week.  Her vision loss that has continued to get worse is due to the white cells chewing up her cornea.  Sounds totally miserable!  Her vision should resolve sometime after the virus is gone.  The silver lining in all of this is that the rest of us have not caught it from her. 

I should probably give credit to Sam, my little germa-phob for keeping me and the intense cleaning of everything she touches to it's maximum so that the rest of us are 'epidemic' free.  Props to the Ophthalmologist too.  As I gave him a little history he was very knowledgeable on every issue we have going on, including the mitochondrial issue of the mutation for Leber Hereditary Optic Neuropathy.  He has even seen patients with that disease! One smart cookie and he's right here just a few blocks away.

Looks like a promising weekend of more adjustments. 




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Saturday, July 2, 2011

No such luck

Well, I was hoping that this week at my parents would allow us to just chill and take a load off from the last two weeks but it seems that will not be our luck. 

Shelbie continues to suffer immensely with this stupid eye infection.  Yesterday was so bad.  It was not only the discomfort she was feeling from day three of her eyes swollen and glued shut with infection but her anxiety was rising too and that complicated the day. 

Finally, at about 10:00pm last night, I got the hairbrain idea to call the after hours on call Oncologist back at Seattle Childrens.  The doc was so nice and looked up Shelbie's past labs and notes from last week and then instructed me to take her to the nearest ER.  He called ahead and gave the ER docs here her history and a detailed protocol of how they should treat her and then the docs here in Coeur D Alene were to report back to Seattle all the findings and results.  It worked like a charm and I felt relieved that Seattle did that for me.

The hospital here was amazing!  We had two doctors since the shift was changing and they were both wonderful.  Had the nicest personalities and great bedside manner.  They made Shelbie laugh and really put her mind to rest.  The nurses were all male and they were great too.

Turns out she has a pretty bad infection, likely to be a Strep bacteria in her eyes.  They did a bunch of Opthalmology testing and her cornea and pressure were fine but the back of her eyes were full of infection and inflammation.  They started her on more antibiotics but if things don't turn around in the next 24 hours, she will have to be hospitalized. 

It was interesting how much ones perspective matters.  The doc here said her white count was normal so the infection couldn't be that bad.  True her white count was normal for a normal person but Shelbie's normal is only 2 or below so her count was actually more than triple what is 'normal' for her.  A triple count for you or me would have doctors tripping over themselves to find the infection source.  Interesting.

So, no rest for the wicked...the chaos continues. 
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Friday, July 1, 2011

Abracadabra...Hocus Pocus....

To freak or not to freak...that is the question.  Who knew the craziness of no immune system would happen so soon? 

The day we leave Seattle, Shelbie gets Pink Eye!  While on the highway driving to my parents, I could tell it was going to be a bad one so I called to our clinic at home to see if one of the docs could just call something in that I could pick up at a Walgreens by my parents' house.  They are awesome...and they did.  We started it right away.

Yesterday, the infection looked to be headed out of control and I was getting pretty worried.  It had spread to both eyes and they were nearly swollen shut with infection and inflammation.  I have never seen a case of pink eye this bad and we use to deal with it alot when the kids were younger. It was getting worse despite the heavy dose of antibiotics Seattle put her on and the antibiotic drops we had already started so, I decided to freak and I took her into an Urgent Care here in Northern Idaho.  Mind you, I was only freaking out under the surface...Appear Calm and Carry on was my mantra!

The doctor and nurse were super nice.  It was pretty overwhelming to have to go through her latest medical history though.  The doctor was an older man in his mid to late 60's and he put his arm around Shelbie's shoulders and said, "I am so sorry young lady!  What a horrible road you have to travel...I am just so sorry!"  He almost made me cry...so sweet!

He added some steroid drops and more antibiotics along with decongestants and antihistamines.  I am still pretty nervous and I can clearly see that this is just the beginning of the potential problems that may come. 

I usually take the 'wait and see' approach when my kids get sick.  I don't generally run them to the doctor at the first sign of a sniffle or low grade fever but now, all that changes.  At what point do I panic, how do I know the best way to treat an infection when it comes, what if I don't notice a problem brewing soon enough and it gets out of hand?  I guess for the next little while, we will be at the doctors alot, at least until we come to grips with having no immune system and life settles down...Crazy...this really does feel crazy!! 

What's worse...I have misplaced my magic wand to make this all better...Abracadabra, Hocus Pocus, We Need Lymphocytes to Focus!!!
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