Saturday, April 30, 2011

Reality Check

This past weekend, we went to Yellowstone as a family. We had a great time even though the kids still had their usual struggles.   Going away is always a reality check for me.  I don't really notice all the medications the kids have to take just to get by each day, well, I notice when I leave the pharmacy with a large grocery sack instead of lunch bag size like everyone else but it's different when I have to pack it all up for a trip.

I load up each of their pill boxes once a week but then there is an assortment of medication that isn't just given in the morning or at night and there are some 'cocktails' I have to mix up so that gets packed in the regular bottles rather than the pill box.  It ends up being a lot...it takes one whole bag just for meds.



It's kind of crazy when I look at it all like this but they use it all.  The boys had a real hard time this weekend digesting their food and just pretty much felt sick when it came to meals.  They tried to muscle some food down but then just got sick afterwards.  I wish I could find something to make things better for them.  I am pretty sure Spencer is starting to lose weight.  He just can't keep much on his stomach anymore. Today, all they had to eat was a turkey sandwich and a little bit of white rice.  Not a substantial diet at all.  I can't see this changing in the near future so it's something I guess we are going to have to adjust to living with. 
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Friday, April 29, 2011

Interesting

Three years ago, when ITP raised its ugly head in our lives again, for the third time to be exact, I joined a Platelet Disorder Support Group.  I don't communicate with anyone on the list, I mostly just joined because they do a great job of their newsletter.  Each month I am able to read up on the latest news in the Immune Thrombocytopenic Purpura world.

I recently saw an article that discussed the role of Platelets.  Most people, including myself use to think that all platelets did was to clot your blood.  Of course that is a big job of the platelets but in this recent article, they stated that platelets are the first responder to wounds but also bacterias and viruses that attack the body.  They are one of the major components of the immune system.  Not only that, they help to regulate blood flow to major organs and also transport hormones and nutrients like Seratonin from the brain.  A person with low platelets is often exhausted and run down. 

As I learn more and more each day about ITP, a lot of the issues Shelbie deals with makes more sense.  Sometimes, the SDS symptoms and ITP symptoms overlap so that's hard but this knowledge is really helpful for me.  When I understand the science behind it, I can do things to keep her more comfortable and I don't freak out as fast...a real bonus! 


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Thursday, April 28, 2011

PICC Line Gone

Shelbie reached the end of her rope today with the PICC line.  Her arm this morning was red and swollen and super itchy and that is without any adhesive.  There was a lot of drainage from the entrance of the IV, worse than I've seen it. 

Home Health came and pulled it out.  Along with the tubing came some nasty looking 'debris', almost like she had scabs on the inside of her veins.  The nurse was a little perplexed but thinks everything will just flush through her system.  It was very strange.  Shelbie was pretty calm but then I think she went into a little bit of shock.  She was shaking and became kind of nauseated and weak.  I think she has been anxious about the blood clots for awhile now and she finally felt relieved. 

We have another week without chemotherapy treatments and then we have to decide if we do 4 more weeks of chemo or move on to have a spleenectomy.  Of course, there is a still a chance her platelets will jump back up to the normal range and we will truly see remission but I have decided that I am going to be neutral about that happening.  If it does, great, if not, then we move on.  I can't keep getting my hopes up, only to have them dashed so quickly.  It's better to be non judgemental about the whole thing.

So, that is all the excitement for today!  Shelbie can't wait to take a super long shower tonight and now I can start taking care of those hives better. 
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Tuesday, April 26, 2011

Houston...we have a problem!

Shelbie looks like she did in the good ol days when her platelets were hanging out at 5 or 10.  She has big broken blood vessels on her neck, her shoulders, her legs.  It's a sad reminder that this chapter of Immune Thrombocytopenia Purpura is not over yet. 

I probably should take her back in to the clinic but what can they possibly do now. I mean we've done it all with no success.  All we can do is wait this out and hope that somehow, her body will pull it together and get those platelets back into a safer range.  At this point, I'd be happy with 40 even if that's where she stayed for the rest of her life.

Spencer got back to school but I kept Sam home until he can be without a fever for 24 hours.  He seems a little better this afternoon. 

I am just feeling run down and tired.  This little family has been maintaining a ragged pace for so long.  I am hoping for a quiet, restful weekend, hiding out somewhere far from problems and worries although it looks like ITP will be joining us, hanging around just to keep me on my toes.  In my mind, I keep repeating the words of that famous little fish we love and adore....just keep swimming, just keep swimming.....
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Monday, April 25, 2011

On and On...

Wow, it's been an emotionally packed 24 hours.  I haven't quite had the time to process it all out yet. I didn't get to bed until 2:00am Monday morning the had to get up at 6:30 to start cleaning and I've been going strong all day long.   Church was particularly difficult, at least part of it so that kind of set this weird mood for the rest of the day.  Now, it doesn't help that I am tired and still on this up and down mood pattern. 

Both boys ended up home sick today.  I can't put my thumb on Spencer's issues.  Definitely still suffering with the effects of Strep throat but there are other things going on and all I can figure is that his pancreas is just not keeping up with his food intake and so he is pretty uncomfortable.  He's been on antibiotics for a week now so I'm sure that his chemotaxis is just making for a slow recovery.  Chemotaxis is when you have plenty of white cells but they are stupid and don't know how to do their job and fight infection.  That was a pretty lame definition but that's a doc explained it to me, so...there you go. I'm not sure what is worse, chemotaxis or neutropenia.

Sam, is running a fever, sore throat, cough and all the rest of the discomforts that come with being sick.  I kind of think it may be viral so I am taking the wait and see approach.  I haven't checked his blood counts so I'm really hoping he is not too neutropenic or else he is going to get into trouble  real fast.

Shelbie can't decide if she is getting sick or not.  One minute she feels horrible but then a few hours later, rallies and I think she is going to be okay, then the coughing starts so who knows.  I do know this though...today, she developed petechaie.  So sad... last week, I really thought a platelet count of 140 meant remission.  Obviously, with these latest signs, they are back down to pretty low numbers. I am not even going to take her for a CBC.  I just can't bring myself to see crappy numbers again.   Arghhhhh.  I really need to learn to stop counting my chickens before they hatch....putting the cart before the horse.... you get the picture.   Still not getting a blood return from the PICC so that's not a good sign either. 

That's today in a nut shell.  I'm beat! 
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Saturday, April 23, 2011

A Mother's Job

A Mother has a special job.  It can not be done from a distance, at least very effectively.  It can not be done by a friend, or a neighbor, neither can it's role be filled by a brother, a sister or even a dad. It's a special job that I was commissioned to do from the beginning of time so, when I can't do my job...I get really frustrated!

Sam is sick.  I can take care of my sick Sam but the only problem is, he isn't here with me.  He is at his dad's for the weekend.  This morning at 7:00 he texted me all his symptoms and begged for me to help him find relief.
"Well, you should check with dad, see what he thinks."
"He doesn't know, please tell me."
"Well, I'm not really sure because I'm not there and can't say for sure how sick you really are. Let me think about it for a minute."
"Mom, please think fast, I need to feel better!!!"

I threw out some basic, feel better ideas... drink lots of water, sip something warm, take ibuprofen and suck on throat drops but it's not the same.  I know that, and he knows that.  What he really wants is for me to make him a bed on the couch, tuck the blankets in tight around him, pour him a glass of 7 up, kiss him on the forehead and make him all better.  I won't be doing that this weekend even though I would love nothing more.  *sigh*
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Friday, April 22, 2011

Is that a problem?

I have alluded to the fact that my kids struggle with school.  It's been the age old problem in our house.  My solution for Shelbie's struggle was to home school through Junior High and some of High School, then she finished her senior year on home bound Studies.  It worked but wasn't easy for either one of us. 

Spencer is blowing it royally!  His GPA is probably around 2.2 but honestly, I'm afraid to look.  It could be higher, maybe lower.  I care, I really care but it's more complex than what meets the eye.  He is so smart but he is so tired of being sick, seeing Shelbie sick, and watching Sam with his struggles that he has a hard time understanding the importance of school right now.  He can't see beyond his disease.  He can't see that he might possibly have a very long life, longer than he is planning that's for sure.  I have tried everything to convey feelings of hope in his future.  He just isn't there yet and it's really sad to watch.  Then there's the fact that I am only one person and can only do so much and making sure he did his 4 pages of geometry is just not on my list of important things to do.  At the end of the day, I am only making sure he felt loved, made others feel loved, made good moral choices and finds something to be grateful for.

He has however, shown a great deal more spiritual maturity in the past few weeks than I have seen from him so maybe the trade off is okay.  He may stink at book work right now, but he his learning far more valuable things about life and God.  So, what's a mom to do?

Then there's Sam.  Bless his little tender heart.  Of all my kids, he struggles the most with school.  It doesn't help that he has a learning disability Dyscalculia.  Two months ago, he tested in the 99th percentile for perception yet below the 5th percentile for processing.  The Psychologist was perplexed at such a combination saying, "It must be very difficult to be Sam."  He was so excited tonight to play a new math game on the computer yet he didn't know any of the answers to the simple math facts.  I could tell he was trying so hard to know the answers but it just doesn't compute like it should but he stuck with it.  I am really worried about him starting Junior High in the fall.  The harder school work gets, the more he is going to fall behind and I don't want to see another one of my kids give up.

In this country, school is treated as the most important thing for a child to succeed at.  The success of their future depends on it.  There's more to life than solving mathematical problems.  Finding 'x' is important but it just so happens our 'x' to solve is different from most.  Is that a problem?
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What's become of my life?

So often, we underestimate the challenges that can come our way.  One day, we're experts on making bread, the next it's all about what is happening to the T-cells and B-cells, neutropenia and thrombocytopenia.  Most parents ask their kids if they got their homework done, I ask how many bowel movements they had so I can estimate how many nutrients were lost and if the pancreatic enzymes are doing their job!  Never did I think medical terminology would be the focus of my day.   

As usual, today was filled with appointments for Shelbie.  Spencer is back at school, not really feeling better but not contagious either. Of course, he's behind, averaging 'D's and I am having a hard time really caring about that.  Shelbie's PICC line broke loose this morning from the stitches she had just two weeks ago.  That was traumatic to say the least.  When we went in for her CBC, they could not get a blood return from the PICC line.  They spent 15 minutes flushing it but it seemed a useless effort.  They can't decide if she has a clot or if the line has been misplaced and is up against a valve that blocks the tubing for any blood return.  It's only slightly unnerving.  On a good note though, her counts were good.  Well, her platelets at least were up to 140!  It's hard to remember when they were that good.  Her other counts are still struggling in the very low ranges.  This truly could be the beginning of remission for the ITP at least.

 What becomes of life now?  How do we shift gears after being stuck for so long on this white knuckle amusement ride that turned my stomach inside out?  How do I move beyond?  When do I stop looking for signs of internal bleeding or petechaie and trust that she is going to be okay or will I always be waiting for it to come back? Chemo only bought her time, not a cure.  It could come back on any day without warning in 3 months or 3 years.  There are no answers.  Rainer Maria Rilke said, "...have patience with everything unresolved in your heart and to try to love the questions themselves as if they were locked rooms or books written in a very foreign language. Don't search for the answers, which could not be given to you now, because you would not be able to live them. And the point is to live everything. Live the questions now. Perhaps then, someday far in the future, you will gradually, without even noticing it, live your way into the answer."

I cannot say that I love these questions and I hate locked rooms and foreign languages.  Somedays, it's paralyzing and maybe compounded slightly by the fact that I have to do it all alone.  At the end of the day, it's just me trying to figure it all out.  It's times like this a loving spouse would be a nice accessory to my life but that's not likely to happen.  I do know this, despite how hard it can be at times, it will all come together and make sense some day if I can just keep God in the driver's seat and hang on for the ride as wild as it may seem some days.

 
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Wednesday, April 20, 2011

What To Do

I'm not sure if I'm alone in this quandry, but it's hard to know how to address people who ask, "So, how are the kids?"

With chronic illness, that can sometimes be an embarrassing question because with three sick kids, there are only fleeting moments when they are all doing well at the same time.  I start feeling like a broken record if I really tell them the truth and honestly, I don't think the majority of people who ask really truly care.

I've tried it both ways, reporting things as they are and just sugar coating reality with a "Fine, they are all fine."  It seems that as soon as I sugar coat our life, our situation quickly spirals out of control and we find ourselves in a big bind.  Then the same people who I replied, fine, too are now scratching their heads because just 24 hours ago, we were fine!

I was reminded of this complex communication problem again last night as a few people asked me how the kids were.  I said that Shelbie is getting along and holding her own but Spencer was having some problems.  They wanted me to elaborate so I did but that was received with deep breaths, eye rolling and the most popular response, "Sorry we asked."  They weren't saying it to be rude, in fact, I knew they were genuinely sorry but it still feels awkward.  Actually, I was sorry they asked too.

I hate feeling like a burden, or that I am just some negative person trying to find problems.  I don't see myself as negative.  I have my days, that's for sure but even on the worst day, I try to find a morsel of goodness.  I hate that we overwhelm people.  I just want to be normal but normal is so far from my realm of understanding I know we will never fit in that catagory.  In fact, I'm pretty sure I could be the poster child for Crazy.  Oh well...such is life...in the fast lane of adversity!
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Monday, April 18, 2011

Home Away From Home

You'll never guess where we will be tomorrow?   Yes, the hospital...but it's not what you think and who you think it is concerning...

We have had an incredibly healthy winter...you know, all things considered.  So, I couldn't help but wonder when the bugs would arrive at our house.  No need to wonder anymore, today is the day the bugs arrived. 

Spencer has strep throat and an ear infection!  He also has a horrible cough and is running a nice fever.  The next logical point to ponder on...when will it hit Shelbie and how hard?  She is sitting with pretty low counts right now and with Spencer coughing all over the place, I can't imagine she will escape this...but maybe.  Stranger things have happened. 

While at the doctors, I went through my laundry list of things that have plagued Spencer for the last 6 months or more; the tremor in his hands, his soggy skin, constant nausea...these just kicked off my list.  I wrapped it all up with the most perplexing problem of all. When Spencer works out at the gym or plays hard like a day of snowboarding or skateboarding, he is completely wiped out and sick, flat out sick.  He worked out 3 weeks ago and can just barely start moving his muscles normally and without pain. 

Of course, beyond strep throat and the ear infection, the other symptoms are perplexing and probably some strange Shwachman Diamond anomoly, who knows.  We are notorious for making doctors scratch their heads in wonder.  At any rate, tomorrow we have to head up to the hospital for a battery of tests, blood work mostly but a nasty test too that our GI wants to have done. 

In other news...well, there really is no other news.  Shelbie is hanging in there...more on her Wednesday or Thursday when we have a CBC to see where things are sitting for this week.
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Saturday, April 16, 2011

The Drywaller, The Wells Fargo Man and God

What does a drywaller, a loan officer from Wells Fargo and God  all have in common?  I bet your dying to find out....

     They all worked hard this week, whether they know it or not, to create for us a little memorandum that God hasn't gotten sick of our whining yet and is reminding me that He's still around.

     This past Wednesday, I was conversing with a loan officer from Wells Fargo about stuff and I just kind of got befuddled, which I often do when it comes to interest rates, weighted averages, fixed maturity and all their fancy lingo. I told him his information was too much for me to take in cause I had a lot on my plate right now with unemployment and sick kids.  He began inquiring further about our health issues and as I was talking, I heard sniffling.  "Oh, sorry, I'm rambling...are you okay?"
"Ah...I get misty when I hear about young people struggling.  My daughter just got a bone marrow transplant and is finally in remission from Leukemia."  He elaborated on his life.

      Now, we're both 'misty' but before the conversation ends, he says, "Please don't give up hope.  I know there seems no way out from under your problems but there will be a way.  God is taking care of things."

     On Thursday at chemo, a couple sat beside us.  The husband has Mesothelioma from years of being a drywaller.  He and his son drywalled the entire I-Center on campus and the Manwaring remodel while going through a year of weekly chemotherapy infusions.  He has spent the last three months in remission but it's back in his lungs and he is now signed up for another year or more of chemo. 
 
      He wore a sun visor type cap with furry white fabric sewn into the top of it so he looked like a Sesame Street Monster.  It was hilarious!  To break the ice when they sat down, I said, "I like your hat!"
"Ya, it's my lucky chemo hat!  I'm so scared of losing my hair."  Just as I was about to say some warm words like...It will grow back soon, or, I'm sorry...he took off his hat to reveal an already, naturally bald head, then burst into a joyful chuckle.  Shelbie woke up at that point and for the next 70 minutes, we didn't stop laughing about one thing or another with this couple.  I think laughter is a tender mercy from God. 

     In spite of all the hassles this week, I can't let a post go by without acknowledging the ever present hand of God.  I know things can't always be simple and carefree and that's ok, at least if I keep saying it's okay...eventually, maybe it will be.  Have a blessed weekend.  Keep your family close.



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Friday, April 15, 2011

Ahhhh...

Last nights celebration was more of a big dose of reality than it was the celebration, I had imagined.  All three kids ended up getting sick and didn't hardly eat then spent the rest of the night rotating through the bathrooms.  I finally handed out the Zofran and put them to bed.  Ahhh...

It seems that one minute we are on cruise control, taking things in stride and the next, things are falling apart around us.  I hate the falling apart moments.  It's just no fun and zaps the energy from me and if the kids can't perceive my energy and hope then it's even harder for them. I guess you could call me the shock absorber.

If you've been reading my other blog, you could probably feel the contention in the last few posts.  I think what set me off was the Student Led conferences they had Thursday night at school.  Spencer was to present a portfolio of future plans.  It was so sad because clearly, he has a hard time visualizing his future.  No matter how much fun and joy I try to bring into the kids' lives, no matter how hopeful I feel or come across, it does not change the reality of life.  The Sophmores had to show a 10 year timeline.  Basically, his timeline for the future is...try to stay alive and then if he's lucky someday have a wife and kids but I know in his heart he doesn't think he will ever have children. He put stuff down to appease his advisor.  It was heartbreaking to watch him muddle through that presentation, making stuff up so instead of admitting my sadness in the moment, I found something to get mad about.  It's easier to say your mad than scared.

Sometimes I just wish there was more I could do to shelter my kids.  It's hard even for me to picture our future, to picture my future.  When Spencer teases me about being a 'lonely, old grandma', I can't help but think there may be some truth to that.  I can't even picture me having to work a 9-5 job when all I want to do to is spend all my time being a mom.  When I have to stop and think about all the things I have to do that have been thrust upon me because of a stupid divorce, it's hard to not be frustrated, even angry but I know that will get me nowhere.

This weekend, I am going to try really hard to find my focus again, only worry about what I have control over and let God work out the details of income, health and all the other things we need.
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Thursday, April 14, 2011

Trudging Day

Several months ago, my friend had suggested that I get some boots for trudging through these trials cause ya know, you gotta look good while trudging and let these trials know who the boss is!  I thought that was a fabulous idea so I got myself a pair of trudging boots.  Today, is a perfect day for wearing my trudging boots.

Today is Shelbie's last chemo day in this cycle.  Tomorrow, starts the 4 week break and the dreaded waiting time to see if this is going to work and put her in remission.  So far, infusion is going well.  It's a quiet day at the clinic today, there are only two of us. 

Her platelets are back up- hooray but her hemoglobin is super low, one point away from being scary low, blood transfusion low so that is now our big worry.  Her white count is even lower than last week, she is more neutropenic than last week.  It seems that more problems are being created as her immune system and bone marrow take a hit with this chemo.  Alas...we will not freak out yet!  It feels so good to have higher platelet numbers and that is something to cheer about! 

I think tonight we will celebrate.  We have to celebrate!  It's a tradition to celebrate at the conclusion of hard things, reaching milestones or just because today, we were brave and courageous.  There are never a shortage of disappointments so it's important to sniff out the tiniest, best part of the day and celebrate!  I think silly string, glitter confetti and pizza is in order!

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Wednesday, April 13, 2011

Not exempt...


I couldn't find a "get out of your problems" card
so I made my own!  I feel so much better about things!
  Feel free to copy this and get out of your problems too! 
We should all be problem free!  ;-)
 A couple of months ago, while I was having a perplexing moment at the doctor's office, complaining about some random problem Shelbie was having, our good doctor said, "Kathy, remember that normal things will still happen even when dealing with abnormal circumstances." 
"Oh...really?"  Hmmmm why hadn't I thought of that concept before?  Yes, colds and flus and other minor irritations still happen.  ITP, Chemotherapy, Blood Transfusions, IVIG Infusions do not give us a pass on the normal discomforts of life. 

In addition to this thought, I was reminded last night that just because we are on the front lines with Shelbie, doesn't mean the other two will magically be healthy and happy through all this.  I have searched and searched for some rule stating you only have to manage one sick kid at a time.  I could not find that rule!  The Universe can surely see how busy you are with one kid and so will reserve other problems for a later date and time...right?

Wrongo, Bongo...!  Sam has been struggling the last several months with a fungal infection on his nose and then it started on his stomach.  I dutifully took him in, got some prescription creams for him, instructed the use of those creams then assumed it would all take care of itself.  Last night, he showed me his stomach...holy cow...it has spread far and wide and looks horrible!!! I was shocked.  Fungal infections are right up there with viruses and bacterias...they can wreak havoc with an SDS kid.

I have noticed that Spencer has been sick alot when it's time to eat or right after he eats.  In February, he seemed to pass some GI tests that indicated his pancreas was keeping up now and so the Doc took him off his pancreatic enzymes.  He said last night that he's been sick since he stopped taking those pills.  Ughhh, I am thinking we got some false negatives or something so we are back to the drawing board with him which means another trip to Boise to see the Gastroenterologist and sort that out.  This morning while eating breakfast, I noticed his hands were shaking as he lifted the fork to his mouth.  I inquired about that and wondered if he was just nervous for ISATS today.  He said he's been shaking for the last 6 months.  When he got up from the table and carried his plate over to the sink, he about passed out and was overcome with a wave of nausea.  Something's not quite right...but what could it be now?  Pancreas, bone marrow...hmmmm.

So, let the fun begin.  Now, I try to get appointments made with the right kind of doctor, watching their blank stares, hearing the same old broken monologue,'We don't see this very often...'.  Hopefully the boys can hang in there until next week.  The rest of this week has my time consumed with Shelbie's little stitching procedure this afternoon, chemo tomorrow, sick on Friday ....blah, blah, blah.
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Tuesday, April 12, 2011

Whew!!!

Okay, I know I've said this before, probably a million and one times before but I am sooooo sick of taking care of the PICC line.  I know I should have more patience than I show at times but it is so anxiety producing and I just don't need anything more to worry about in my life. 

Last night, Shelbie accidently caught her PICC line arm on something and the whole contraption, all 300 layers of sterile gauze slid down her arm, including the IV line!  It was pulled out a good 2 inches!! Oh my goodness...if that didn't get my heart pumpin, and Shelbie's too.  Of course, I can't cry and quiver, I'm the freakin mom!  I am suppose to know how to remain calm in a crisis! Try telling my insides that...but I did keep myself cool, calm and collected.  So much so, Shelbie asked why I didn't seem to care.  Oh, if she only knows what I go through in my head each day. 

I had no choice but to thread the IV back through her vein...blahhh.  I have done and seen a lot of medical procedures in my day but that gave me the heebie jeebies!  The horrible thing is, I had no more sterile gloves!!  Home Health was here in the morning but I wasn't and they didn't leave me enough supplies and I had run out of sterile gloves.  At the late hour, I couldn't just run to the medical supply store for more so I did what I thought was the best thing.  I grabbed the IV tube with an alcohol pad as I slid it back up her arm. 

About 1:00am this morning, after just barely getting to sleep, I woke in a cold sweat and panic that not only did I thread the IV in but sent with it all kinds of bacteria that would turn into a raging blood infection and she would die!  Oh my gosh, it was a horrible night!  I can only pray God will make a miracle out of my lousy nursing skills. 

Anyways, I heard back from our great Doc this morning and they will stitch it to her arm!  I am so relieved.  Sometimes, it's the little things that throw you over the edge...not chemo, not bone marrow failure but a stupid PICC line!
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Monday, April 11, 2011

Sometimes

Sometimes, do you ever feel that if you hear one more piece of bad news you might just gnash your teeth to powder?  Sometimes it can get so overwhelming for me to hear the trials and hardships of others no matter what they are, health problems or otherwise.  Sometimes, I just wish no one had to suffer but then I remember that sometimes, the best lessons I have learned came from suffering.  Sometimes, I remember that the most holiest place to dwell is that place when all you can do is wait upon the Lord for something good to come along...and it always does with perfect timing.   Sometimes the good doesn't always come in the form we expected or were watching for.  Sometimes...no all the time, the gifts from God are better than we could have even imagined for ourselves or thought of asking for.  Sometimes, even when I know I can't save everyone, I still like to try.  Sometimes even though I know that God has a plan, a great plan and I know that peace can and does exist even at ground '0', it doesn't make the suffering I see any easier. 

I have been waiting anxiously for my friend's baby to be born and he finally arrived, a little early, by two weeks but he is here!  I was so excited to hear from my friend tonight but it was sad news and I could hardly contain the little bits of my heart that were crushed by her news.  Ya see, my friend has two daughters and one was diagnosed with Shwachman Diamond Syndrome just a few short years ago, she is now 6.  Not only is Shwachman's a genetic mishap in her family but so is Hemophilia.  Their son developed pneumonia just hours after being born and has a rapid heartbeat.  They tested him for both Hemophilia and Shwachman Diamond.  Sadly, he has Haemophilia.  The genetics on SDS are still pending.

I don't think chocolate chip cookies are going to fix the sadness my friend and her husband are feeling.  I don't know what will fix the sadness.  I hope they can weather the storms just up ahead.  I hope I can think of one measly thing to help them feel better and find the hope that they so desperately need.  I really hope they don't have to deal with SDS and their new baby boy!  Sometimes...it's just so hard.
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Saturday, April 9, 2011

End of the rope

I think we have reached the proverbial rope that has no end...not even a frayed bit to hold on to anymore, or so it feels.  The blisters and hives are so bad and we have exhausted everything we can think of to do to get things under control but nothing seems to be working.  They are beginning to ooze a nasty thick yellow yuck and the sterile guaze sticks to it so when I change the dressing I have to soak the guaze with sterile saline to get the mess cleaned up.  I have even had to change the dressing twice a day because it leaks through.  The whole situation is just exposing her to too much infection risk.  So, Monday morning, I am going to get the ball rolling to meet with a surgeon next week and have the PICC line stitched in to her arm.  I am told by several nurses that this seems to work for people with bad allergies.  Here's hopin'.

I didn't report on the rest of her counts from Thursday.  Her white count is quite low- 2.9 and she is neutropenic.  Her red count is also well below normal.  Oh, did I mention she has petechiae!  Blech!  I am watching her close and hoping she doesn't get sick.  She had to do a wedding photo shoot all day today so I hope she doesn't pick anything up from that.  Church is out of the question for tomorrow and that's too bad because she hasn't been able to go for so long. 

We are still trying to make the best of things around here.  So many have helped by giving us great ideas for fun and that has been wonderful!  We cooked up a little silliness on our own as we prepared for a second dressing change yesterday...
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Friday, April 8, 2011

Somebody's Praying

Since I keep referring to a song that I had never heard before until we started hanging out at Teton Oncology, I thought I would post the YouTube video of Ricky Skaggs performance.  It's a nice song but nicer when someone who is battling brain cancer sings it. 


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Thursday, April 7, 2011

Tough Day

Today was a tough infusion day!  I had I high hopes, I mean really high hopes that chemo today would go off without a hitch.  They did tell us that each time it should get better and faster as her body receives the medication more willingly. I also had high hopes that last weeks over the top counts meant remission and we would continue to see great, untethered progress.  Unfortunately, that was not the case today.  What was I thinking anyways?  My kids never stick to what the textbook says and things are never really as they seem.  My next tactic is to buy those darn textbooks and make them read each wordy page so they will know how to behave next time!  I will have them write out a hundred times, "I will be a textbook!" (just kidding...)

So, Shelbie had weird reactions today.  The IV Benedryl that they give her as a pre med didn't knock her out like it was suppose to and always has, it caused her to have violent, involuntary jerking motions.  It was scary and funny all at the same time.  There was nothing they could do to make her comfortable.  The other medications like Zofran and Ativan made her so sleepy but the adverse reaction she was having to Benedryl left her in this strange stooper, super groggy but revved up at the same time.  Because she couldn't sleep through it today and in fact was up and down all morning from the recliner, she had to suffer through the nausea, pain, congestion, and everything else she felt the first time. To top it all off, her platelets took a huge drop from the 100 we have been seeing.  She is treading back in the danger zone so that was an enormous disappointment!  I can't even tell you how sad I felt.

It was just an off day at chemo.  Everyone having infusions today went through crying jags and I tell you, my heart broke into a million pieces, a million times over.  I HATE seeing people sad, scared, hurt, worried, lonely, anxious....ughhh, I can't handle it, it makes me crazy inside!  Matt, the gentleman with brain cancer was back to today to sing and play his guitar and the whole room wept when he sang his song by Ricky Skaggs- Somebody's Praying.

As I looked around at the women sitting there,(they were all women today) and set my gaze upon their faces I couldn't help but wonder if they were crying because they feel alone, as if no one is praying for them or if they knew that so many people really are hoping and praying.  I hope they were feeling some love and peace from God and could feel that at that moment, I was praying for them, each one of them.  I was praying for Shelbie, Spencer and Sam...I guess I was praying for me too.... Life is hard sometimes isn't it?  It's hard but it goes on no matter what and God is good! 


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Wednesday, April 6, 2011

Chemo Week 3

We are gearing up for round 3 of chemo.  I have mixed feelings on this eve.  Part of me feels hopeful that her counts continue to raise but there is also a part that is nervous that they have dropped.  Obviously, there is no point in worrying, only 12 hours until it all starts again.  I think things will be the same as last week.  They will just sedate her as soon as we get there and she will probably sleep until Friday sometime so that's a good thing if she can sleep through the nasty side effects.  They did mention that with each infusion she should be able to manage things better because her body won't be fighting so hard against the foreign substance being pumped into her body.  Here's hoping that is the case.

Shelbie has had a pretty good week.  She still runs a fever off and on for unexplained reasons along with a nagging headache and discomfort in her arm.  We have eliminated all adhesive- everything but still she has hives so I have no idea what is going on.  I really don't think that she will be able to keep this PICC in for the full 97 days.  I think we will have to pull it after her last treatment.  Her arm is in such bad shape and no amount of Benedryl or Xyzal gives her relief anymore.  A sweet friend crocheted a 'bandage' that wraps tightly around her arm so that has been helpful to keep things snug.  We will just have to keep trying things to bring as much relief as possible. 

Tuesday, April 5, 2011

Shwachman Surprise

For the most part, we sail along in life feeling pretty normal, ya know, all things considered, when I'm not reflecting or thinking too hard.  Anywhoooooo, yesterday, we were working on our little Christmas in April project, tying a quilt and making some other little things.  We had another great family join us and the kids divided up amongst the two projects. 

Spencer, because he is so awesome, joined my friend and I at the quilt.  It was tough getting those needles in and out of the fabric.  For Spencer, it was nearly impossible!  He actually knows how to quilt, the kids and I have made several of them in days gone by but things have changed I didn't realize it until last night.

One common problem for SDS kids is that they don't regulate their body temperature very well.  This can cause overheating problems which can get serious.  All of my kids have gone through these periods especially when they were younger that their faces would get so red and flushed, beat red!  Sam is in that phase right now.  He can't sweat and in the summer when he is playing outside, he has to be really careful to take lots of breaks to try to cool down.  It seems that when that phase subsides, they become soggy!  They have an over abundance of moisture on their skin even in the dead of winter when all they have on are shorts. 

That was Spencer's issue last night, too soggy.  His hands were so full of moisture he couldn't grasp the needle to get it down through the fabric or back up.  It was one of those moments when inside, my heart did flip flops as it sunk to the bottom of my stomach. We both knew as we looked at each other that SDS was wreaking havoc again!!!  He felt bad and later in the night, apologized for not doing a good job.  He did an awesome job and I felt bad that he felt bad.  He never complained and made a really big effort to be helpful.  I think he was partly embarrassed as well. 

It's weird how random things can really weigh you down when you aren't expecting it. 

Monday, April 4, 2011

Looking Ahead

It's been an interesting few months.  I have spent the last few nights reflecting on where we have been and where we are now.  We have milled around some very foreign places and wondered if it would become our new 'home'.  We have been stuck in some pretty tight corners with little room for escape.  I am speaking of course of the health challenges the kids have been faced with. 

I haven't had a lot to do with other people who face chronic health problems but of the few I have communicated with there is a common theme that seems to materialize.  It's really hard to maintain your individuality.  The disease redefines the borders of your life and you end up feeling like you are always in flux, trying to maintain the cadence of chronic illness.  Adjusting your thoughts, feelings and actions to accommodate the ever changing landscape of the day.  It's a hard way to live even when there is not a crisis at hand. 

You end up with two choices really.  You can choose to be bitter and angry, complain that life is just not fair or embrace the daily shifts and become a nomad of sorts.  Each day brings a new lesson to be learned. 

I feel like perhaps as far as ITP goes, we are on the horizon of remission or at least a period of stability.  My heart tells me the chemo treatments will work and we are on the right path.  That feels great but it also leaves me feeling a little lost, wondering what is next for us.  How do I make that change from every other day hospital trips, long nights, the staring contests with mortality, preparing to say goodbye sooner than later and the list goes on.  I think we will have a whole new set of challenges.  ITP will never be gone and it will never be forgotten.  It will become more like a sleeping giant and no one can predict when it will raise it's ugly head again. 

In the meantime, it's back to accepting this life of chronic illness and realizing once and for all that this is who we are and all our hopes to become just normal, regular people is not going to happen.  I have wanted so much for all these problems and worries to just go away but perhaps like the quote below suggests, Shwachman Diamond has made my family what it is today; we are loving and close and pretty cool if I do say so myself.  I guess it's time to just live it and learn from it. 

Do not free a camel of the burden of his hump; you may be freeing him from being a camel.  ~Gilbert Keith Chesterton, Orthodoxy, 1909

Having said that, I still reserve the right to live in denial when necessary and allow myself appropriate moments of sadness because no matter how many words I use to convince myself life is the way it is meant to be, it's still hard- a much harder life than I ever imagined for myself and my kids.   

Saturday, April 2, 2011

Home Health

 Home Health has quite literally become taking care of things here at home.  Because of the serious allergy that Shelbie has developed to adhesive, they had to stop putting the large adhesive coverings over her PICC line because the huge welts were starting to 'weep' and bleed.  This is not a great thing because now all that is covering the PICC line which goes directly to her heart are a few layers of sterile guaze. 

The Nurses on Thursday wanted the dressing changed every day or every other day at the most.  When we got home from the infusion, I called Home Health to let them know of the dressing changes.  Well, of course that would unleash Hell on Earth, why wouldn't it?  When it comes to insurance coverage, it's all a game of politics and how much money they can save.  The soonest Home Health would come is Monday afternoon and she said it's not likely they will be able to come everyday because of insurance issues.  So, that really puts me in a big bind. 

Shelbie was not happy about this and really I wasn't either.  By yesterday afternoon, the PICC line was exposed because the sterile guaze was sliding down her arm.  Taking matters into my own hands, I went to the medical supply store to stock up on sterile dressings.  That was an hours worth of shopping just to get the things I needed for the weekend alone!

It's critical that the site where the IV enters her arm does not get exposed to air for very long and especially not exposed to human breath so Shelbie and I both have to wear sterile masks.  I start with two 2x2 sterile pads, then a sterile 3x3, then 2 sterile 4x4 then wrap her whole arm in sterile sponge wrap to keep the smaller pieces intact.  After that we put on a cotton stocking wrap then a bandage wrap called Coban.  After it is safely wrapped, I flush the IV with Sterile Saline and Heparin.  The whole dressing change process takes about 45 min and this stuff though it's cheap, adds up quickly.  She still has to have a little bit of adhesive touching her skin because there is a plastic piece that keeps the tubing snapped down to her arm so she is still going crazy and yesterday, there was a lot of drainage coming from that site but there isn't much we can do about it.  It's going to be a long 87 days with this thing. 



Friday, April 1, 2011

Freaks Me Out

Hanging out in that infusion room is starting to freak me out.  My already anxious mind is even more anxious when I talk to all these people who have such horrible cancer stories to tell!  I'm beginning to think I am going to go see a surgeon and just have him take out all the parts I don't need anymore!  I'm serious!

Today, we met a lady who is 88 years old.  Today was her first day of chemo for Ovarian cancer!  Ovarian cancer at 88!!!  I didn't ask but I'm pretty sure she didn't see that coming!  Her daughter was telling me that she has a tumor on her ovaries the size of a volleyball.  This elderly lady was such a tiny thing; tiny frame and so thin except for this ball protruding from her abdomen.  She is the 4th or 5th woman I've met there that has ovarian cancer and all of them are way past child bearing years and menopause.  Those ovaries were just sitting there doing nothing and now they are infested with cancer that has spread throughout her other organs and at 88 has a quite a fight on her hands.  Makes me so sad, you have no idea!

It's not worth it to me.  I have had enough scares in my life, I am done messing around!  I'm all about prevention.  I had to have a hysterectomy when I was only 35 years old because of all sorts of problems and complicating issues.  They left my ovaries but as soon as I am done with those, as in menopause comes and goes, I am getting them yanked out! What else could I do without.....hmmmmm.  Ovarian cancer seems like the worst because there are very few signs and symptoms to alert you and by the time you do find out, it has already gone too far.  There aren't good screenings either to watch for ovarian cancer to start.  Blech...

I guess there's no point in worrying about what may come in the future but still, it's hard when you see so many people suffering every week.  I was not cut out for this world, I'm way too sensitive and wish I could make it all better for EVERYONE!!! I hate suffering!  I pray my new friend will be a tough soldier and live to see her 100th birthday.