Tuesday, August 30, 2011

I Stand Corrected

Well, I really didn't have a lot of hope about the appointment for Shelbie earlier today.  In fact, truth be told, not only was I negative and hopeless about the whole thing, I was nervous too.  Deep down, I didn't want to get back to life so soon after the couple of weeks I have spent with my head buried in the sand!

In case you were wondering, my head is no longer in the sand...blech!  I think I learned a few things about us while sitting in the doctor's office waiting, waiting and waiting.  Our nervous anxiety comes out in the most ridiculous joking and uncontrollable laughter.  All the waiting really got us out of control.  I was wishing we had a video camera with us to make a You Tube video...it was so funny but, you had to be there.  

When he finally walked in the room, I was red with laughter and blurted out, "Glad you could make it!"  then Shelbie said, "Thanks for joining us."  and we all laughed again.  Seriously, he was nearly 45 min. late just getting in the exam room.  We waited  20 minutes in the waiting room but the whole time, he was wandering around the reception area chatting and laughing with the receptionists and we were the only ones in the waiting room so being late didn't make sense.

He scoped Shelbie and saw that she has tons of swelling and inflammation and initially thought it was a viral infection.  As we spoke more about her history, he felt strongly we needed to look further for a fungal infection because none of the antibiotics, steriods, anti histamines, decongestants have done anything to make even a slight difference in two months.  He said a fungal infection would be stubborn to any of those treatments.  So, tomorrow, we will do the CT scan to rule out a fungal infection or more serious bacterial infection in her sinus cavity, behind her eyes or even in her bone.  Let's pray it's not a fungal infection.  The only treatment is surgery and trust me, we don't need surgery!

This doctor earned his place on my coveted pedestal.  It's getting harder and harder to make it to my pedestal of fame.  What did he do to earn that place you ask?  Well, he was the first doctor ever to acknowledge how hard this is on Shelbie, on me, on our family.  He didn't try to treat her like a 'regular' patient.  He considered deeply all the factors...no B Cells for instance and the role her crummy immune system might be playing.  He explained that her body may not show an immune response like most to an infection so she overdoes it.  Most of us, with a sinus infection would be laid up, fever, feel pretty crummy.  Since Shelbie has only had a low fever of 99, we, some doctors, assume it's nothing serious when it could actually be life threatening but her body doesn't recognize the seriousness of it. That was a paradigm shift for me.  It's hard, even for me to change gears and know how to take care of someone without an immune system.  It's actually very terrifying.

He went on to review what she has gone through in the past 4 months.  Chemo, bone marrow biopsy, iron infusions, plasma infusions...He said that the amount of energy her body is expending just to try to heal from those things...how it is taking all the energy to try to rebuild her bone marrow after chemo destroying it all, is staggering.  Then throw even a simple virus into the mix and it will overwhelm her system.  Wow!!  That is staggering and sobering!  Most doctors assume she is just depressed and that is the reason she is so tired...I will never look at her in the same way again.  How do you even be a parent in a situation like this?  My reference points for taking care of illness have been lost...I can't wait for a high fever to alert me to a problem...I can't let things like eye infections go for two months without being a louder squeak in the wheel. 

This is crazy...what is becoming of this beastly disease....it's hard.


A Little Sinister

I have had this gnawing feeling that waiting until Wednesday to take Shelbie into the Doctor was a bad idea.  I called first thing to get her into an Ear, Nose, Throat doctor this afternoon.  Her eyes just keep getting worse, her congestion but now her lethargy and her appetite.  She has hardly eaten in several days. 

I am not holding out hope that this doctor is going to have any idea what is going on or what to do for her and two months from now, I will still be writing about inflammed eyes!  I just want her fixed...apparently, that is too much to ask.  See, there is my sinister attitude coming out!  Bleh!  I am just so sick of doctors and sick of my kids not feeling normal.  It's really hard when they come to me with the usual problems of feeling sick or even new problems and I know that if I take the to the doctor's we will just hear those familiar words, 'Not sure what this means." It just gets so frustrating and hard to feel like a good mom. 

Oh well, it will be interesting to see where this afternoon takes us...

Sunday, August 28, 2011

What's the deal?

This is truly getting annoying...Shelbie woke up again this morning with bright red eyes, oozing green slime from them.  Not only that, her nose had been bleeding in the night and her teeth were caked in dried up blood.  Sorry, maybe a little graphic but true. 

I tried to flood her system this morning with histamines and antibiotics in an effort to bring her some relief.  This afternoon, her eyes have cleared up as far as the extreme redness goes but they are still goopy and slimy. 

I just don't understand what is plaguing her and how it can be hanging around for so long!  My gut tells me that this is not so much an eye problem as it is a sinus problem.  I am going to give it 3 days with this regimen I started with her today and if not, then I feel strongly that we need to get a CT scan of her sinuses to see what in the world is going on.

 She stayed in bed most of the weekend because she has felt so horrible.  This afternoon, I made her get dressed and pulled together and we went for a drive and stop by a friend's house to deliver some cookies.  Our house is blazing hot and the heat only adds to her discomfort.  It was good to  get out of the house and spend a little time in the coolness of the car. 

Welcome back to reality...This week, I will be following up with the Neurologist and Immunologist for test results still pending from June...Hard to believe some tests take this long to process.  Should be an interesting week.

Wednesday, August 24, 2011


It's been two weeks since Shelbie had her IVIG infusion.  She is doing better but not stellar.  She still has a mild cold but the nosebleeds, which are probably unrelated to the viruses she has had are still a big problem.  Her nose bleeds just about every single day and can last well over an hour.  We haven't done a platelet check in two weeks so it's hard to say if that is the problem or something else we have yet to figure out. 

I continue to avoid the list of things the doctor needed me to do.  I think we will get through this week then plan to be responsible next week. I know I can't put it off forever even though I wish I could.  I wish putting it off and pretending like everything is fine really did make everything fine!  Everyday, there is an ugly reminder that things are not fine.  Spencer is getting more and more nauseated no matter what he eats anymore.  We have to get to the bottom of that for sure... Oh well, til next week.

Sunday, August 21, 2011


  The kids have been gone since last Friday!  It has felt like a very long time but they will be home tomorrow and I am really looking forward to their safe arrival.

I have learned some valuable lessons this week that sort of caught me off guard.  I never realized before just how important respite is when dealing with a chronic illness.  There comes a point when you reach a level of information saturation.  It feels like all you accomplish in a day is getting to the next doctor appointment, sorting out the 60 or so pills for the day.  On top of all that, add in the phone calls from specialists summing up another defect they stumbled upon then before hanging up the phone, hearing their standard line, "Don't worry about any of this until we figure out exactly what it means."  Okay, sure thing, no problem... don't worry and then... someone asks when your going to finally find a job!

Sure it seems it all becomes part of the day, as common as doing the laundry.  I tuck the chronic worry in the back of my mind and try to move on.  Always moving on.  Always keeping a smile on my face because I can't allow all the chaos and confusion surrounding their health problems to suffocate us, worry the kids. I have become a champ at 'stuffing' the worry, the problems and moving on to make sure everyone is well adjusted and happy regardless of the toll it takes on me. When one of the kids breaks down and cries in undertones of worry and fear to ask if they are going to die, I carry a tender smile in my pocket, a reassuring voice, and a gentle touch that lets them know that everything is fine and I do all that while choking back my own tears of uncertainty.  It's hard but it's the only way to manage such powerful things.

This week, while the kids were gone, I felt a release from my role as mother and caregiver.  That doesn't happen very often and I was left wondering how I would survive without the two things that have defined me for so long!  I didn't have to be the shock absorber.  I didn't have to be sure to carry around my cheerful countenance. I guess in a way, you could say I lost my stuffing.  All those feelings I stuffed came out this week because they could, I was all alone.  I had lots of quiet time to come to terms with things, handle things I have had to put off and even go to the doctor to attend to some of my own health problems that had to take a back seat to the kids.  I took inventory of my mental and emotional health.  I discovered that lots of things need to change. 

One morning, I woke up and felt like the four walls of my room had closed in on me.  I felt like Alice in her wonderland of being oversized in ridiculously tight quarters.  My room is also my office.  The place where I pay bills or more accurately, stare at the bills to be paid.  Where Shelbie does her photo editing, where I blog.  It's the command central of our home.  I try to keep it organized but it still represents so much stress.  No wonder I don't sleep at night.  No wonder I can't focus or pay attention anymore.  I decided that was my first step in change. 

I emptied a closet in the hall, I dismantled my desk which was an antique door, I moved out the filing cabinets and the old rocking chair my ex husband had given me some time ago when my kids were babies.  I don't need reminders of him cluttering my life anymore either!  My project isn't done but already, I can see how much better this room is going to be.  My sanctuary!  My escape when I need a moment to catch my breath and reassure myself that everything is going to be okay.  It will become a place where I can meditate and be directed by God. 

With all these changes, and I will post pictures of my redesigned life soon, I am feeling rested.  I feel like I have worked a lot things out emotionally and I'm ready to be engaged again.  I didn't address one medical issue of the kids' this week.  I didn't talk to the insurance company like I was suppose to.  I didn't follow up with doctors, I didn't do one thing pertaining to my jobless status or the declining health of my kids.  Most importantly, I said 'no' to some things I knew would just add to my overwhelm this week.  That's a hard one for me.  Anways, to end this long story, I feel calmer as the kids come home and school starts up this week.  I haven't felt this way in forever I think...and though it may be fleeting, I am glad I experienced it.

Wednesday, August 17, 2011

Be Not Afraid

Be not afraid...this was the title of an email I received this morning in my inbox.  I get these "Thought for the day" newsletters from Oprah.  I don't remember requesting such a thing because I don't really like Oprah but I keep opening them because they are usually pretty good messages. 

The author suggests that there are 6 things we are afraid of but really don't need to be... Just so you know, the thoughts in italics are mine, not the author's.
1.   Burglars in the house  ( It could happen)
2.   Plunging off a bridge in your car and landing in the river below
3.   An elevator plummeting to the ground ( I never use to be afraid of this but now that it's been       brought to my attention as a possibility...)
4.   Drowning in quicksand (my personal favorite since I so often find myself surrounded by quicksand but now, thanks to this article, I don't need to be afraid of it anymore!  So relieved!)  Moving on...
5.   Being kidnapped and held for ransom (at least the kidnapper understands my great worth)
6.   A plane crash.  (I rarely fly so...not relevant, today at least.)

Hmmm, this article was not that helpful.  Are these really things we are afraid of in life?  These don't even come close to the things I am afraid of in life.  How about an article on things that are really scary like losing your job and never finding another one or finding a job that takes you away for 40+ hours a week from the one thing that brings you peace and joy, your kids.  Coming down with the 'awful' and 'terrible' which limits my capacity to be a mother and take care of my kids, that's a scary thought. Being afraid of Shwachmans, Mitochondrial disease, Dyskeratosis Congenita and any other orphan disease that carries a huge pricetag- the life of my children.

Then there are the little things that make me scared.  Scared I won't be able to absorb all the bad things so my kids can live a happy, sort of normal life.  Scared they will give up, scared they will lose hope, scared they will be scared...yes the list goes on and seems a little more in depth than the 6 important things listed in the article. 

The moral of the story?  Well, in this day and age, there is plenty to be scared of.  Fears can consume one's day but then what is left?  Ed and Deb Shapiro, who have written a lot of material on Fear, generated an acronym  for F.E.A.R- False Evidence Appearing Real. 

Since all the tumult last week, I realized I needed to chill...focus on what I know to be real and dwell with that for a bit.  That is where my efforts are this week but it's hard to stay in a place such as this.


Friday, August 12, 2011


The world of chronic illness is an interesting one.  I've mentioned before that I am part of an email support group.  I reported this morning the results of the kids bone marrow biopsy and the other news of abnormal telomere's and pancreas issues on the 'list'.  It's a good place where people understand the crazy parts, the discouraging parts, the sad parts and can celebrate the joys and milestones. 

Within 30 minutes of my post, I had two phone calls from mom's who are in the exact same 'limbo' we are in and whose children have also tested positive for abnormally short telomeres.  One lady even called me while she was boarding a plane.  She happens to be the Vice President of the Dyskeratosis Congenita (DC) Outreach Registry.  We were able to talk for about 15 minutes but she crammed a lot of information into that short amount of time.

Her daughter hasn't had the genetic testing of the disease but is being treated as a clinical DC patient because of the signs and symptoms she has.  Her daughter was diagnosed by the same doctor that we see in Seattle only this family lives in Texas!  Once again, there is no doubt in my mind that finding Dr. Shimamura was no coincidence but rather a miracle.  Her daughter is the 56th person to be diagnosed in the United States.  Dyskeratosis Congenita is an 'Orphan' disease because it is so rare, only one in 2 million births.  There are less than 200 DC patients in the world!

When I stop to consider the odds, I think it's impossible that all three of my kids have this.  On the other hand, when I read the symptoms of it, I think it's impossible that they don't have it!  It's so confusing and discouraging.  The bottom line is, the kids definitely fall somewhere between SDS, Mito and DC and who knows what else.  There are only a handful of diseases with shortened Telomeres so I feel we are getting close.

So, now comes the hard part.  I have to find a way to get the genetic tests financed that our doctor wants in order to move ahead.  If we don't do the genetic testing, we remain stuck, just putting out fires instead of being proactive.  One of the mom's who called me today told me about a program at the National Institute of Health in Bethesda that will pay for the genetic testing if we can somehow be invited into their study of DC.  Incidently, I met the Hematologist at NIH 11 years ago.  She is a world famous Hematologist and when we met, she was so intrigued with my kids, she invited us to be in her Bone Marrow Failure Studies so we have been with her for all these years, sending blood samples every so often and filling out questionaires yearly and phone interviews periodically.  Dr. Alter at NIH is also heading up the DC study and is good friends with Dr. Shimamura in Seattle so this may just work out in our favor.  I understand though that we would be required to travel to Maryland if we are accepted unless we can work it all out through Seattle. 

No rest for the weary...I wonder what it is going to feel like when a doctor looks me in the eye and says with 100% confidence, "Your children have...." 


Thursday, August 11, 2011

Results are in...

I finally heard from our doc in Seattle this afternoon.  After 7 long weeks of waiting and wondering we have another mixed bag of fun.  Where to start, the good news or the bad...

The good news is that all three kids' bone marrow is stable from 6 months ago.  The bad cells are still there in the same quantity, the cellularity is the same which means their marrow is basically empty of producing even a minimum number of cells.  Depending on where you stand this is either good news or bad news.  From my vantage point this is good news.  Of course I would have rather heard that things looked better but I will gladly take stable too!  So, we breathe for another 6 months and do it all over again!

The bad news...She ran some specialized tests on Shelbie which I was actually unaware of and those came back very abnormal.  It was to test her telomeres.  Hers are abnormally shortened.  A telomere's job is to protect the ends of the chromosone from deterioration.  Hmmm...so now what.  Well, she is unsure of what to do with this information at this point. She wants to test for another genetic disease called Dyskeratosis Congenito.  Interestingly enough, this disease is very rare and can look an awful lot like bone marrow failure, shwachman diamond syndrome and even mitochondrial disease.   I am speechless! 

She also did additional testing on the kids' pancreas and Shelbie and Spencer tested borderline for pancreatic insufficiency even though their fecal fat testing came back normal. 

Now what?  We continue to live in limbo I guess.  She had no idea what to do to help Shelbie with the infections we can't seem to shake but she has had two meetings already with the immunologists to discuss our kids and she had another later this afternoon.  She said they are getting closer to a plan and the Immunologist will be calling soon with results and a game plan...I can hardly wait!

In the meantime, Shelbie is hanging in there post IVIG.  The actual infusion was bad.  She had so many side effects but they tried a new drug to counteract that a few hours into it and she was able to get relief.  I'm hoping those effects will keep the headaches at least manageable.  She currently has a bad one along with nausea but I think we will be able to handle it at home instead of the ER.

Where's the meaning...

"What does all this mean?  There has to be some good that comes from such a crappy life."  This was the question posed to me by an aquaintance I met at the cafeteria in the hospital yesterday.  She has nine kids but her youngest two have had a summer of health problems, nothing but hospitals and trauma. In the midst of all this, she lost her job.  A job she worked at for 30 years and when she asked for time off to take care of her son for a few days, they told her she couldn't have it off and they didn't really care if she quit or not.

Her story was so familiar to me in many aspects and I wanted to tell her how relatable I thought she was, I wanted to tell her she is not alone but I found myself trying to keep a safe emotional distance.  I don't know why, it wasn't really fair but sometimes, it just feels like I am barely cobbled together too.

Even still, I left with a tender place in my heart for her.  As we said goodbye, she implored me to call her and in her final words to me she said, "Really, there has to be good things come out of all this suffering. I want to find the good.  I want to make these struggles worth the effort.  I want to share a hope and love for others ya know?"

I do know what she means.  There was a time when I wanted so badly to find the reasons, the purpose, the good in the struggles but lately it just feels like I am so worn down to do anything but just survive, get through one long, tedious day that melds into the next.  I haven't questioned WHY in forever, maybe never and I don't plan of questioning the whys now but perhaps its time to ask the WHATS of our situation.

What good can come from this?  What can I do to make a difference for other's who struggle?  What can I do to change the world, foster more love and gratitude?  What more can I do for my kids?  What can I do to share what I've learned to help others along the path? I guess the biggest question of all...Why haven't I done anything worthwhile with my life but just get by?  Lots of food for thought...


Wednesday, August 10, 2011

Feels uncomfortably familiar

 Same room, same nurses, same antiseptic smells and even the same episode of CSI playing on the tv and the same old feeling that some things never change.  Shelbie's been premedicated and the first bottle of plasma is dripping through her veins.  
 IVIG that was planned for yesterday is actually happening today.  Yesterday turned out to be an exercise in patience. With confusion from the hospital, doctor's office and the insurance company, people just couldn't get it together in the timely manner it has happened in the past.  I guess it was for the best.  I was able to dash into the city to get a couple gifts for Shelbie's birthday, start her cake, do the laundry, pay bills and all those tasks that were waiting for me to handle. 

I really hope this is the answer to finally beating this stubborn virus.  It's really weird that last week while she had the stomach flu, her eyes were totally back to normal.  No inflammation at all but just a couple days after the flu, they started getting nasty again and this morning when she woke up, they were all glued shut and yucky with infection.  Go figure. I guess time will tell.

The rest of the week is going to be hard.  We are expecting the rotten side effects like she has experienced all the other times with IVIG but will be pleasantly surprised if by some chance she is spared the misery.  It will be really hard to let the kids go on Saturday with their dad on vacation.  I'm not sure what I will do with myself without them for more than a week. At some point during the next two days, I really want to be able to celebrate Shelbie's 19th birthday and hope she is feeling up to that.  I can't believe she is 19 already!!


Monday, August 8, 2011

Taking the good...taking the bad.

Unfortunately, all good things must come to an end and all bad things must begin.  We will be home for just a few short hours before Shelbie will have to be in the hospital for the dreaded IVIG infusions!  She is just not kicking these viruses, surely as a result of the chemo that killed her B Cells and immunity.  Hopefully, the IVIG will give her the help her body needs to get on top of these illnesses she has.  Too bad she will have to get much sicker before she will begin to feel better.

IVIG, as we are all painfully aware, causes aseptic meningitis so I am gearing up for that on Wednesday and Thursday and then hopefully she will be well enough to celebrate her Saturday birthday on Friday because Saturday, the kids have to leave to vacation with their dad for several days.  As you might guess, that is just another cause for me to be stressed but I won't go into that now.

So, here we go again...Deja Vu!


Friday, August 5, 2011

Promises to keep

"We have promises to keep and miles to go before we sleep" Robert Frost 
This quote has been on my mind alot this past year.  It has kept me going when I felt too tired to go on.  I never anticipated how much harder life would become with Shwachman Diamond as the kids' got older. 

I guess that's probably a common reaction; adversity strikes, you find a different rhythm and life becomes a new variety of normal.  The problem comes when you assume it will never change again but then it does.  It seems your way is hedged and finding that rhythm and a normal you can live with becomes more challenging. 

This year, SDS has felt so big.  So big there has been no way over it, no way under it and no way around it.  It has stalled life, kept me sputtering and spinning and it feels like I have accomplished nothing in over a year but just trying to keep us all above the level of the drowning waters. 

In reality, there isn't time to deal with distress and as much as I would like to just park myself and give up, I have made promises.  Promises to my kids to create the best possible life for them, promises to myself that I would not let my kids down but most of all, promises to my God that I would keep on keepin on and do everything I could to get us all home safely.  I intend to do that but some days it's harder than others.  I have enjoyed the few hours of respite we have had today.  I am trying to suck in all the healing balm of peace I can and bottle it up for rougher days that are sure to come. Ahhh.

Thursday, August 4, 2011

Less than patient

Things have sort of gone from bad to worse on this 'fun' little getaway.  Tuesday, Shelbie started throwing up...throwing up like crazy, every hour all evening and all night.  Yesterday, she stayed in bed all day with nausea and pain but her eyes seem a little better.  I was going nuts trying to keep clorox on anything she touched so that it doesn't just spread through the whole house.

Last night, Sam was feeling sick and I lost my patience.  I felt really bad because they thought I was mad that they were sick.  I wasn't mad that they were sick, I am just so sick of never having a day without worry or complaint.  It's just getting so old.  I seriously can't remember the last time we just had a fun time without anyone being sick, without being poor...It's so frustrating.

I think Sam had heat stroke.  He played all afternoon on the river and it's super hot here.  By 9:00pm his face was still flushed and hot and he was weak and exhausted.  It took me over an hour to get the two kids comfortable so they could hopefully sleep. 

Today, maybe we can get through without any problems but to be honest, I am sort of done expecting good things to happen. I think it may be better to just expect problems and if things turn out differently then great.

Tuesday, August 2, 2011

Second Verse...Same as the first

 Did you hear all that screaming last night?  It was me because guess who has a raging eye infection?  YUP, none other than my dear Shelbie!  What the What?!!!  Unbelievable!!! Better than the eye infection...we are at a family reunion!  Oh joy!

I talked to our doc and I guess he is done 'waiting' to see if she kicks it and wants her in the hospital for infusuions ASAR- As Soon As its Reasonable.  So, now I am in the unlucky position to try to decide if we call it a day and get back in the next day to get her to the hospital, take her to the hospital here or continue with our plans and do it when we get back.  I don't know what to do. 

I have tried to get her to make the decision but she is torn.  She really wants to be here and spend time with my family that we don't see from Canada very often but she also doesn't want to end up in trouble with a massive infection that overtakes her body.  Aggghhhh.  Is it too much to ask to just have a break?  Just one week of doing something fun when everyone is healthy enough to enjoy it.  It's kind of getting sad.

Her eyes are almost exactly as bad as they were a month ago only they haven't started bleeding yet.  This afternoon, she started noticing that her vision is blurring, a sign that her cornea is being chewed up again.  This was suppose to be our 'family fun vacation' no doctors, no hospitals. So much for that and...here comes some big time whining...(If you don't want to read my whining, then consider this post done.  See ya tomorrow.)  they have to leave to go on vacation with their dad and step family next weekend and will be gone more than week so as always, I get stuck doing the dirty work...hospitals and sickness on my time with the kids and he just gets to show up when everyone is healthy and actually enjoy the fun things he planned.  Totally sucks!

Monday, August 1, 2011

Facing your fears

At every stage in my life, there's been something to worry about.  When I was a teenager, my best friend was really sick.  I always worried about what I would do, what I would become if I lost her.  Well, one day, I did lose her.  I had convinced myself that I would never survive without her.

When I got married, I worried for a moment that it wouldn't last.  I remember the morning of my wedding, I said to my soon to be husband..."Are you in this for forever cause if you have the smallest doubt, tell me now cause I'm in it for eternity."  Well, forever ended up being 14 years and I had convinced myself that I would never survive.

Two years ago, the economy tanked in our little town and my biggest fear then was losing my job.  I remember telling a friend, "Surely, if layoffs happen, they won't lay off the single mom." Well, they did and I had convinced myself I would never survive. 

After a half a lifetime of experiences and trials I had convinced myself I would never survive, here I am and I have survived.  Not always an easy thing to do and I have had my moments of dark despair but here we are.  In the end, I was so glad when my biggest fear was finally being realized because the anticipation of the bad thing was way worse than the actual event.  Divorce was horrible but not as horrible as I had made it out in my mind to be.  Losing my job was devasting but in the devastation, I found strength and resources I never knew I had.  Having sick kids is something every mother fears, especially pregnant ones but I conquered that one too. 

Now, my biggest fear is cancer.  Cancer in one of my kids.  Though it's admittedly a twisted way to think, I sometimes just wish it would hurry up and happen so I can stop worrying about it and realize that it's not as bad as I have made out to be in my mind.  I know mothers ,who right now, are fighting for the life of their child who battles cancer at a young and tender age and I don't know how they do it.  I stand in awe of them, their courage, their faith cause right now, it's my worse nightmare!

  It seems like cancer has threatened us so many times, I'm sick of the threats, the anticipation of dealing with it and then find out it was a false alarm!  All these false alarms are worse I think than just dealing with the real thing...does any of this make sense?!!  But then, I don't want that either!  I guess what I'm really asking for is to not have to be scared anymore... Perhaps that's more an issue of the mind than in the circumstances of life.  I just wish I had a better mind to wrap around all this!


Thank goodness for internet support groups!  I sent a ranting, rambling, sad and depressing message to the email support group for Shwachman's that I belong to over the weekend.  I got a lot of supportive messages but one message really saved my life. 

The day after the kids' bone marrow biopsies, we met another SDS family in the waiting room while we were waiting to start Shelbie's infusion.  Their son had just completed his biopsy.  His mom emailed me tonight to let me know that our doctor has been gone on vacation this past week and won't be back until next week!  She was also concerned about her son's results and after going through a few nurses and some red tape, was able to get another doctor to sign off on the results and send her hard copies and turns out his news wasn't as good as they were hoping for.  

It brings me a little relief, a little breathing room to know that she is out of town but it doesn't make this waiting any easier.  I find that I can become very selfish when I'm waiting for test results like this.  I forget that doctors have a family, spouses, a life outside of the hospital and I am not the center of their Universe.  I know...it sounds very shallow but that's how I feel sometimes.  I just wonder if they have ever been the parent of a sick child or in my case, sick children who worry all the day long about the damage done everyday by a disease that no one can seem to slow down or stop.  Waiting 6 weeks or more for results is kind of unfair and compound that with a virus that won't go away and we are...well, going NUTS!

We made it through the weekend but it was busy and tiring.  I always think I am handling things okay until I start having wacky dreams and that's how I know the stress is getting to me.  Last night, I had a dream that my hair just started dropping out in big patches.  I looked up the meaning of that and it means that I am dealing with situations that are completely out of my control!  Wow...pretty accurate!  I found myself, throughout the day getting all choked up and emotional just out of the blue.  When I think about living through more and more years of declining health in my kids, it becomes more overwhelming than it use to be.   I always thought things would get easier as they got older but boy was I wrong!

Even though this is my blog, my thoughts, I still feel bad for being a downer lately and feel like I need to apologize.  I am still not feeling 100% so that makes it even more difficult to handle little setbacks like we've experienced this week.  On a happier note...We get to see Spencer tomorrow!!! I can hardly wait!  I've missed that boy of mine!  He has been vacationing up in Canada with his friend's family and has been gone over a week!  I can hardly wait to give him a big hug and kiss.  That will for sure cheer us all up.