Tuesday, November 30, 2010

Pioneer Children

There is a song the kids use to sing when they were little in Primary at church.  It was called Pioneer Children.  I think that title is very fitting to use for the circumstance we find ourselves in. Just as the Pioneers walked long distances to create a better life for themselves and those generations to come, my kids are also part of an elite group of children living with SDS.  Allowing doctors to study them so that life will be better for those still to be diagnosed. 

 When I spoke to our doctor yesterday, he said the kids were in some ways, charting through new territories.  Of course lots of people have ITP and we are not the only ones with SDS and if it turns out the kids have mito disease, we won't be the first for that either.  The doctors are barely skimming the surfaces of these diseases as far as research goes.  Much has been learned but there are still so many missing pieces.  Unfortunately, we find ourselves stuck in that place where there is no sure treatment. We try one thing, hope for the best but if it doesn't work we move on to something else.  Everyday, is a day closer to finding those answers we long for.  For now, we just have to live the questions and the answers will find us in some distant day. 

It was interesting to listen to our Oncologist reason things out with me.  They aren't just planning for this week but for the future of my kids.  I was especially glad to hear that they are not only concerned with their physical well being but their emotional as well.

I guess as a parent and a mother, I too am learning to navigate through this barren land of chronic illness.  There are no markers or footsteps to follow of those gone before.  No defining borders and nothing to tell me I am on the right track. It can be a little overwhelming.   My kids too feel the weight of their responsibility to gracefully accept this life and find an element of 'normal' for themselves. 

I am proud of them everyday.  We have so much fun together despite the problems.  I can't express enough gratitude for all those who have offered prayers, visits, phone calls and warm thoughts.  That makes the journey all more peaceful.  We are really being watched over.

Monday, November 29, 2010

A Little Reprieve

Sunday ended up being a better day.  The headache was manageable and she had a couple of visitors as well.  It  perked her up and kept her spirits up.  One thing I can say about us, we still seem to find our humor even when things are pretty gloomy.  People hear what Shelbie is having to go through right now and I am sure they think the feeling here is pretty heavy and depressing.  It really isn't.  It's actually pretty upbeat and positive.  That's not to say we don't have our moments. Sometimes, I find myself wondering how the world can go on when we are stumbling so much.  It doesn't last long and hopefully, is normal. 

Today is pretty good so far as well.  Shelbie had signed up at the beginning of the month to work today and tomorrow.  She had a one hour project to do at Walmart for Crest, setting up a display and such and one to do tomorrow at Broulims.  Once you sign up for a project, it's pretty hard to get out of it.  We headed to the hospital first thing to get her daily CBC.  Her IV was not working properly so they had to pull it and stick her again. The poor girl is so beat up and bruised from blood tests and IV's.  Nurses are struggling to find a decent vein to use.  We got home after about an hour or so and she crashed until it was time to get ready for work.  She is still on pain meds and anti inflammatories for the headache so no driving for her.  I drove her to Walmart to complete her job at noon.

We have had a lot of little blessings and tender mercies already today.  Last night, when we were falling asleep, (I've been sleeping on her floor just in case she gets into trouble through the night) she said how much she just wanted a stuffed bear to hug while she is going through all this.  At the hospital this morning, the nurse brought in a great big stuffed monkey as a gift for Shelbie!  Not a bear but a really soft, cute monkey.  It was so kind of the nurses in short stay.  I have really been impressed with them this week.  I felt like that was an answer to prayers.  Even though it was small and insignificant really, I have always thought that if it's important to you, its important to God.  I pointed this out to Shelbie.  It was almost as if that monkey was a little heart message from God letting her know that he is near!  It's little things like that that truly make all the difference in this journey.

The second blessing we had was at her job.  The project today involved bringing boxes of Spin Brush toothbrushes out from the stock room and putting together a holiday display for Crest.  Oddly enough, Walmart had no stock left in the Spin Brushes! None on the shelves either.  The materials for the display were no where to be found.  Typically, if there isn't work to do then she is to stay for the allotted time straightening product or dusting the shelf of the product she is representing.  There was nothing to do so she was able to leave.    I was so glad.  I was torn this morning about calling the corporate office myself in California and cancelling for her but then I thought it would be important that we try to find our new 'normal' and get her back into a routine as much as possible.  I was hoping it would be a good distraction.  Just being in the store for 10 min was way too much for.  She was shaking and weak and ready to collapse.  Another tender mercy that by chance, there was nothing for her to do.  She will still get paid as if she did the job so another bonus for her.

The third blessing was that I was suppose to clean two houses today.  I cleaned the first one while Shelbie was napping this morning after the hospital.  The second one was suppose to start at noon, the same time Shelbie's was to start.  I didn't want to leave her alone at Walmart but didn't want to cancel cleaning either.  Just before we left, the lady I cleaned for called to tell me she had a kidney stone and wanted me to skip this week.  Whew!  I was relieved but sad that the lady has to feel so bad. 

I am really proud of the way Shelbie is handling things.  If you saw her today, other than being real pale, you would never know she had anything wrong with her.  I'm sure it makes people think we are making all this up!  I wish we were.  Oh, I guess I better mention the best part of the day...her platelets are at 72!  That is awesome.  I hope they continue to increase.  One thing about ITP is that it is very unpredictable.  One day it can be up, the next day rock bottom.  Our past experience with this, it has dragged on for months.  We don't want to go through this for months but if that is how it has to be then we are ready for it!  This will be a big week as we wait to see how long the IVIG will help the situation.  Though it is taking a huge toll on the rest of her body, it is nice to see that she is out of the danger zone for bleeding.  We will take whatever we can get at this point.  

Sunday, November 28, 2010

ID Tags

This week, being at the hospital so much, I have been intrigued with the nurses ID badges.  What is up with that?  No one, not one person showed any resemblance to their photo.  It was really weird, even the BYUI student paramedic we had last night.  His picture had him looking like a 90lb 15 year old but in reality he looked to be in his mid twenties and definitely not 90lbs. ha ha. 

Okay, just thought I'd throw that out there.  We had high hopes for yesterday, we really did but the headache kept getting worse throughout the day, the fever lingered and by evening the vomiting started.  Try throwing up when you already feel like your head is going to explode.   I've never done that myself but to watch Shelbie was less than entertaining.  My heart broke for her.  There was nothing more I could do and felt helpless so I took her up to the ER.  They started fluids immediately and morphine.  That helped her settle down and the pain eased up a bit.  She had two bags of fluids and a couple injections of morphine and sent us home with IV anti nausea meds.  The doctor felt admitting her could be beneficial but he wasn't opposed to letting her go home.  Shelbie chose to come home.  We were finished around 2am.  She has been sleeping well since then but I woke her up to take more pain meds at 7:00.  I'm hoping the pain doesn't get away from us.  They sent her home with the IV intact so she has an open line just in case.  I feel better about that. 

The excitement doesn't end there.  Just as we were walking out the door, Spencer was in an accident and his car is now undrivable.  He is okay but that was almost the straw to break my back.  Then I had to deal with attitude from my wasband....that was the last straw!

 As I walked with Shelbie into the emergency room, it felt like we had time traveled into the 1920's.  The snow was falling in slow motion from the illuminated night sky.  Across the parking lot, in the city park, a celebration was taking place.  The pavillion was festively decorated, people were bundled up and a tinny sounding Christmas carol played from the band.  I felt like I was stuck inside and old, old radio program.  The weirdest feeling ever.  I felt the whole world just spinning and nothing felt familar.  I turned to Shelbie and said, "Does this feel strange to you? The crazy sounding Christmas music, the onslaught of problems, coming to the hospital AGAIN? This can not be freakin real!"
She looked at me, even the way she looked at me seemed off, she stopped in her steps, shook her head and let out a grimacing chuckle, "Ya, your right, crazy".  I still hear that distant, old radio music playing in my head from the band in the park.

Saturday, November 27, 2010

Running out of snappy titles...

I am running out of snappy titles for these posts.  Suffice it to say, all the days lately are long, hard or tiring, disappointing and frustrating.  I have no idea what to call today's post, 'Headache from Hell'.  Shelbie-Sue was not lucky enough to avoid the worst headache of all time.  It isn't quite as bad as the last time she had IVIG but it's a 7 on the infamous pain scale.  Her platelets are coming up which is dandy.  She has a whopping 24 now!!  Not good at all but 23 better than 1!  Funny how what makes us happy shifts.  I use to be really happy with 100, even 50 didn't worry me too much but after living with 1 for a couple of days anything is a relief.

I am not enjoying the learning curve to all this.  Immune deficiency disease is not something I am very familar with at all.  It took me 18 years to get a handle on the ins and outs of the basic SDS disease.  I am part of an email support group and they have been helpful with information and ideas of what I need to be doing to keep her comfortable.  I still kind of exist in denial thinking this is just going to go away soon and everything will be back to normal.  The people who have SDS kids that also suffer with ITP do not make it sound like this is just a passing episode so it's a little scary.  They also can't believe she is at home and not in the hospital.   It's hard when doctors have the last say.  It is different looking at things from a professional point of view than the emotional and mental one that clouds our vision.  Somehow, you have to find a resolve, peace of mind that the doctor does know best.  I just wish I had more information.  We will now have to add Immunology to our list of specialists on board now.  Dr. Shimamura will set that up for us this coming May while we are there for bone marrow biopsies and mitochondrial clinic.  I would love to sit down with an Immunologist today and get my education started in that area so I can start asking intelligent questions and piecing the big picture together better.  Somehow, it all has to be connected.  Big sigh....

Friday, November 26, 2010

Super Long Day

Bad Photo, the room was really dark.  This is what IgG looks like.  The pharmaceutical company Grifols that manufactured this is in Spain but we have a Grifols plasma center in our very own little town, right on main street.  Funny they had to send it all the way from Spain!  God bless all those students who donate each day.  I wonder if they know they saved a life today?

Shelbie, not feeling on top of the world but graceful through it all.

The infusion from Shelbie's view.  Cool how you can see me sitting next to her in my pink, wool coat.

About 7 hours of infusion and we are done for today.  More tests tomorrow but that won't be a big deal, I hope.  The nurses today were terrific!  They were so happy, helpful and had a great sense of humor and treated Shelbie as if she were their own daughter.  That made all the difference in the world.  They took it nice and slow and loaded her up with benedryl and tylenol beforehand in hopes of avoiding the nasty side effects.  She spent all day with a low grade fever and pretty low blood pressure.  Not sure yet if those symptoms will prove to be a problem or not.  So far, no headache to speak of so we may not have to deal with aseptic meningitis. 

Her counts are still in the tank so she is far from out of the woods, especially the bleeding risks since she is still functioning on an insanely small number of platelets.  This is no immediate fix that's for sure but it's a start. 

Even though this last week has consumed my thoughts, still in the back of mind is the nagging reminder that mito tests are still pending and should be coming in days, maybe a week.  I don't imagine this white knuckle ride is over yet.  Until then, we will just keep hoping and praying.  I am really pleased with where we stand right now.  Of course it can always be better sometimes we have to take what we can get.

The fun begins soon...

Half an hour and Shelbie starts the IVIG infusion, unless by some miracle her body kicked into gear and is now making platelets hand over fist!  It could happen, it's happened before but only time will tell. 

Here are a few facts about IVIG
IVIG stands for Intravenous Immunoglobulin
It contains the antibody IgG that is extracted from the blood plasma
It can take up to 20,000 donors to get enough IgG for one treatment
Results can be seen in 24-48 hours though some may have to wait 3-4 weeks before seeing an improvement
Some may never see good results from this treatment.  After 3-4 sessions of infusion and no results, they
        abandon the course of treatment. 
If good results are seen, infusions can happen every week or every couple of weeks.
The cost of one treatment......$10,000.  Merry Christmas Shelbie!!  ( I'm just kidding of course)

This has been one expensive fall.  $40,000 for bone marrow biopsies and mitochondrial testing.  There is a shortage of platelets.  One article I read said they can be upwards of $5000 for one transfusion of platelets, more if it's irradiated.  Now a $10,000 bill for IVIG.  The cost of the hospital and doctors still remains to be seen.  Whew, this is not a cheap disease to have.  Hopefully, I won't get stuck with too much of this.  We should be covered but time will tell. 

Thursday, November 25, 2010

The latest

It's hard getting sick over the holidays.  Not much could happen today.  Tomorrow morning we will head back into the hospital for an IVIG treatment.  Hopefully she won't have too many reactions from it and maybe by some great miracle her platelets are coming back on their own and in my perfect world, we won't have to do the infusion.  It never hurts to keep hoping. 

Today has been quiet but filled with lots of well wishes and warm thoughts.  So many kind people extending invitations for me to join their families.  I was able to take a good long nap and felt much better about things afterwards.  I really needed some quiet time when I could just let the feelings come without trying to hide them or put on a facade that everything is okay.  I felt bad saying no to such kindness but it was the needful thing. 

I will update more tomorrow.  Things change quickly in our little crazy world.  You really can't predict what will happen next even though we like to try. 

Platelets

Platelets

Dripping away

One very tired, emotionally spent, super brave young lady. 

How do you spell INSANITY

I will tell you how to spell insanity; R -E -D  C- R -O -S -S.  I hate to give them a bad rap but they seriously messed up today!  This morning, Shelbie was suppose to get her platelets at 8:00am.  We arrived early, ready to deal.  The platelets had not arrived as anticipated because of the storm that has been in the area for a few days.  Salt Lake had grounded flights last night.  No big deal, she said they tracked the package with Red Cross and the platelets had been irradiated and they had been put on the first flight out this morning so it would just be a couple of hours.  We left, went home and waited for them to call us back up.  The nurse called around 11:00 to say that they didn't make the flight as planned but they would be put on a later flight but would arrive at the hospital at 2:30.  We went back up at 2:00 to get the IV started, bloodwork done etc.  2:30 came and we were anxious to get things started.  Her platelets had now dropped to 1000.  Very dangerous at this point for hemorhaging spontaneously.  We tried to be patient.  Just after 3:00 the nurses came in with some bad news.  The blood had arrived but it wasn't for Shelbie.  They had mixed up the blood!  So, back on the phone with Red Cross, they promise it will be on the next flight.  At this point, I thinking two things: I could have driven down there myself, drove it home and had her transfused long before now and how many next flights can there possibly be?  Finally, at 5:30 the platelets had arrived safely and were ready for her. 

It's really hard to describe everything I was feeling the moment the nurse hung the IV bag of platelets.  You would have thought we just received a heart or a liver! Something more precious than life itself.  I felt so much gratitude for the one person who has dedicated themselves to giving blood every month.  Such an easy thing to them I'm sure but to us, it literally saved our daughter's life.  Shelbie can't have the typical donated blood because she is a high risk patient and potential transplant recipient.  We can't afford for her to get Myelofibrosis, it would complicate and compromise a successful transplant.  I wanted to cry but didn't.  I was sort of in shock as I watched her parched body gulp up those precious cells.  It took less than 5 min for her to drain those honey colored platelets.  Amazing!  In a half hour, her platelet count had gone from 1 to 55.  A tremendous blessing!  Far from normal, but we'll take it!

So, here is the run down of what the next few hours hold for us.  At 8:00am this morning, (Thursday) we will go back to the hospital for another CBC.  If she has crashed again, then they will diagnose her with autoimmune thrombocytopenia, ITP.  This disease means that her immune system is seeing her platelets as a bad thing and destroying them faster than she can make them.  It is difficult to treat and there is no long term cure as far as I know.  If the platelet count is still at 55 or higher, then they will make the diagnosis of aplastic anemia which is essentially bone marrow failure.  She has been in bone marrow failure for some time but there are degrees of failure.  Remember from the results two weeks ago, the doctor said she didn't know how much longer their bodies can continue to compensate for their lack of marrow.  Well, maybe her body has finally had it.  Tomorrow will tell.  There is a third possibility that she has both in which case I really don't know what happens. 

What becomes the treatment?  If she has ITP, then we start infusions of IVIG which sucks!  When she had this three years ago, she contracted aseptic meningitis which is a rare side effect.  She would have to have this weekly and usually involves a day or two in the hospital if there are no side effects.  If it is bone marrow failure then we will keep her going with transfusions until everything is in place for a bone marrow transplant.  That could be months down the road.  It's a lot of information. 

All in all, I am overwhelmed with the outpouring of love and prayers.  A great friend came by tonight to cheer Shelbie up and we enjoyed just laughing and letting go of the heavy day.  Another person called to say she would donate blood for Shelbie, they have the same rare blood type!  How awesome is that?  I am really touched.  It will be a great Thanksgiving no matter what happens!  We are so blessed and live a life of abundance!

Wednesday, November 24, 2010

Who was I kidding? Ha, ha, ha!!!!

It's 11:35.  It's been a horribly long day with Shelbie in the hospital and waiting for Red Cross to find some intelligence.  Long story which I will report on next, in a different post entitled something like, "How do you spell INSANITY?"  Anyways, Shelbie is not out of the woods, not by a long shot and she is anxious about going to sleep so I will stay up through the night to be sure she doesn't have any bleeding issues, that means a lot of time to blog! I have to say, when I opened up my blog tonight, I realized that two days ago, I said how happy I was that this was going to be a quiet week "medically speaking" and was looking forward to a "happy, healthy" Thanksgiving.  How funny!!!  No really, it makes me laugh...you can't blame a girl for hoping!  Medically speaking, it has been chaotic, bizarre and so overwhelming I don't even think I am living in the same plane as the rest of you and I am so sick of speaking in medical terms I want to YAK! Anyhow...

For the last two weeks, I have been really thinking about the scripture in Matthew, Consider the lilies.  I realized that I can't change what is happening to us but if I have faith and believe then God will take care of us no matter what we face.  There is a beautiful song that shares the same subject and it's called Consider the Lilies.  Below are the lyrics.

Consider the lilies of the field,
How they grow, how they grow.
Consider the birds in the sky,
How they fly, how they fly.

He clothes the lilies of the field.
He feeds the birds in the sky.
And He will feed those who trust Him,
And guide them with His eye.

Consider the sheep of His fold,
How they follow where He leads.
Though the path may wind across the mountains,
He knows the meadows where they feed.

He clothes the lilies of the field.
He feeds the birds in the sky,
And He will feed those who trust Him,
And guide them with His eye.

Consider the sweet, tender children
Who must suffer on this earth.
The pains of all of them He carried
From the day of His birth.

He clothes the lilies of the field,
He feeds the lambs in His fold,
And He will heal those who trust Him,
And make their hearts as gold.

He clothes the lilies of the field,
He feeds the lambs in His fold,
And He will heal those who trust Him,
And make their hearts as gold.

Why is this important today?  Well, when we were finally able to leave the hospital tonight, the song playing on the radio was Consider the Lillies and the verse was the one "Consider the sweet, tender children who must suffer on this earth.  The pains of all of them He carried from the day of his birth."  I'm not going to lie, today has been so hard but insulating all this pain and sorrow is the fact that God is carrying us. He is carrying Shelbie, the boys and me.  All he asks of us is that we trust him and in return he will heal us and make our hearts as gold.  This shouldn't be hard; sometimes it is but what a return on a 100% safe, insured investment!

Tuesday, November 23, 2010

Really tough day

Today came at us from out of nowhere.  I had an early morning doctor appointment and when I came home, Shelbie was up and announced that she had lots of petichae.  Petichae is basically broken blood vessels, in Shelbie's case, happens when her platelets are low or dropping.  I wasn't alarmed or even really that concerned but thought with the holiday week, we should at least get a CBC just to be sure she wasn't in any danger.  We went with the boys to shovel the driveway of a widow and then drove over to the oncologist's office.  We have had a huge storm in the area for a few days now and we arrived just as they were closing down.  Most of their patients cancelled and they wanted to get the staff home before things got worse.  I told them it would just be a quick CBC and didn't even need to see the doctor since I can pretty much decipher what all the counts mean. 

We all sat in the waiting room placing bets on what her platelet count would be.  The winner had to buy lunch.  The guesses ranged from 115,000, 105,000 and 80,000.  Sam didn't want to play, I guess he was afraid he would win!  When they realized I said the winner had to buy lunch, Shelbie changed her guess to 2000.  Well, she was the winner.   What was suppose to be just a 10 min stop in the day, became a couple of hours of information overload.  Thankfully, we caught the doctor before he left for the day and we were able to conference call with Dr. Shimamura in Seattle. 

This is where we were three years ago.  Her counts were rock bottom; as they are today.  She ended up having chemotherapy for months.  Chemo is not an option this time.  After a lengthy discussion on what was causing the counts to crash, we all agreed that a platelet transfusion is what we will do.  That however, is not as easy as it sounds. 

She can only receive irradiated platelets.  Because she is a candidate for transplant, they have to remove any 'accidental' cells that get into the platelets from the donor.  They aren't a big deal for you and I, but can cause a lot of problems for an individual with Bone Marrow Failure Syndrome.  Not only that, instead of just taking any old pint of platelets from the bank which could be made up from many donors, they have to choose platelets that have come from only one source.  This means, that they need to find a donor who goes faithfully and regularly to give blood.  That sounds hard to me but apparently it is not as hard as it seems.  If they don't take these precautions and measures, then she could develop a secondary problem called Myelofibrosis. (I think I have the terminology right...don't quote me exactly though.  I will find out for sure tomorrow)  Essentially, this is when the bone marrow begins forming a spider web of scar tissue that could impede any chance of a successful transplant down the road, should one be needed. 

I am very grateful to these two great doctors who worked so well together and involved Shelbie and I in the decision making process.  It helped Shelbie feel a little more empowered.  Tomorrow morning, bright and early, Shelbie will receive a 'six-pack' of platelets at the hospital.  Throughout the day, they will check her blood and track what is happening to her new blood.  If the counts stay up all day, then the doctors will know that her drop in counts is caused from bone marrow failure.  If  by the evening, her counts have crashed again, then they know she has an autoimmune disease called Immune Thrombocytopenia or ITP.  I am glad that we are finally settling this debate once and for all.  Our Oncologist here believes that this is a case of ITP, I have always believed it is a case of bone marrow failure and have respectfully disagreed.  He knows I don't entirely agree and we have a good relationship about it still so that is good.  Neither one is something we want to have to deal with but at least knowing will allow the doctors to choose the right treatment for her instead of guessing. 

As you can imagine, this has been a really hard day to navigate.  I try to be positive and happy around the kids but tonight Shelbie said, "I'm sorry I am so upset.  Obviously this is no big deal, you don't even seemed bothered by it."  I explained to her that I can't just allow myself to fall apart or I would never put the pieces back together.  As soon I open the flood gate of sorrow and tears, it's anybody's guess if I will ever be able to turn it off.  I especially can't do that in front of my kids.  I am their anchor, their rock.  I have to present a strong front of hope and faith so that they have something to buoy them up.  I have all night, to let the tears escape and they are none the wiser that I spent the whole night trying to stitch my heart back together. 

Even though this has been a tough week, I still feel we have so much abundance, so much to be thankful for. God is good to us!

Sunday, November 21, 2010

Daring to hope

 With Thanksgiving this week, I am really hoping the kids stay healthy.  There are sick people all around us and it seems impossible that we might be so lucky as to dodge the strep or flu viruses but I am crossing my fingers and hoping.  Medically speaking, we should have a quiet week.  Tomorrow, I will spend a fair amount of time working with the National Shwachman Diamond Registry to get the kids, myself and extended family members registered.  They sent the large, overstuffed envelope of questions and procedures for me but it has to be filled out with a nurse from the registry so that will happen tomorrow.   I'm not exactly sure what being part of the registry means but it is something that our Oncologist deemed absolutely necessary so I suppose I will learn more tomorrow.  Other than one doctor appointment for Shelbie, Spencer and me, we have no other doctor visits planned. So, here's hoping for a healthy, happy holiday!

Thursday, November 18, 2010

If I didn't have bad luck...

Wow, what a day!  Tuesday, we spent the afternoon at the Ear, Nose, Throat doctor.  I believe, I would rather see a dentist for a root canal than have someone messing with my ears, nose or throat.  I had anxiety just watching what Shelbie and Spencer had to go through; air pushed through their ears, plier like things up their nose and all sorts of poking and prodding.  Yuk! 

Spencer was there because he is still having problems with his soft palette in his mouth feeling swollen and enlarged. Back in April, he sneezed and seconds later, his uvula and palette were resting on his tongue.  No one could figure out what was going on and as a wild guess, threw out allergies as the possible problem.  Spencer complains about it alot so I decided it was time for a specialist to take a look. The doctor wanted to do a scope while we were there.  They put a tube up his nose then dropped it down his throat.  I felt so bad for him.  It looked horribly uncomfortable and he takes after me with a deviated septum so it was really tight and uncomfortable.  From that, it was decided that Spencer was suffering with allergies so today, we went for allergy testing and a hearing test for both Shelbie and Spencer.

The allergist was really nice.  Spencer was tested for something like 56 different things from weeds to shrimp.  The list of what he is NOT allergic to is much shorter than what he IS allergic to.  He is not allergic to dogs, dust, molds,mites,cockroaches (what a relief!ha ha), cattle, horses, feathers, milk, eggs, wheat or soybeans.  Too bad we aren't farmers, he's not allergic to farming!  So, all trees, including pine trees he is allergic to as well as all weeds, and cats.  But, get this, the boy is allergic to POTATOES!  Seriously?  We live in Idaho and he is allergic to potatoes!! Not just a little allergy to potatoes but a moderate one meaning, he may be banned from potatoes!  He also has a sensitivity to peanuts!  I was shocked to say the least.  We have a follow up with the ENT next week but this might explain his constant congestion, runny nose, swollen palette, maybe even some of the nausea we deal with daily.   Honestly, I couldn't believe it.  Now I want to get Sam in there because its a fight to keep that kid from drowning in mucus on a daily basis. 

While the kids were getting their hearing tests, I decided I may as well have mine tested too.  I know I have hearing loss, I was diagnosed with that problem well over 10 years ago.  Lately, I have been feeling like I am underwater when I talk or sing and even play the piano.  I feel like my ears are plugged and it's been annoying the last year.  I was not expecting any news other than, 'you have hearing loss'.  No such luck!  My hearing loss is so bad I need a hearing aid.  NOT only that, the pattern of hearing loss suggests either trauma to my head when I was younger or a progressive bone disease in my middle ear!!!! How does this happen to me?! Now, I have to go see the ENT.  The Audiologist said that eventually, those ear bones will have to be replaced with a prothesis but I may have a few years before this has to happen.  Even with the surgery, I will still need a hearing aid because they can't recoup what I have already lost.  This sucks!

Sunday, November 14, 2010

The Giant Awakes

It is interesting to me how easily I am tricked into this false sense of security.  Like being lulled to sleep on a gently rocking boat.  How easily I try to forget all the issues that come with chronic illness in hopes of eliminating stress.  Not just try to forget but actually compartmentalize it all so that it disappears somewhere in the back of my mind.  For awhile, I really believe we are normal as the most normal family could be.  From out of nowhere, the boat isn't rocking so gently anymore and I can't believe I've been duped again!  Perhaps it's a good thing but it feels like ripping a bandaid from freshly formed road rash that covers my leg. It stings. 

This week seems to have lasted forever and existed before time.  Results are a distant memory until the tiniest thing wakes up this giant of anxiety in me.  Spencer called tonight.  He is sick.  The symptoms are vague, no energy, extreme fatigue,nausea, no fever, no sore throat, nothing that would make me think it is just the common cold being tossed around when winter sets in.  He doesn't think he can go to school tomorrow.  We make plans for him to stay home again and I say goodnight.  I will see him in the morning when he comes home from his dad's.  My own stomach is turning and my head hurts now.  Butterflies play another round robin in my chest.  Dread is all I feel when I think of having to call the school again to excuse him for another day.  I am reminded that even a cold can be a disasterous event in the life of an SDS child and I realize that maybe I am not as normal as I like to think I am.  Not many other moms panic at the first sign of a sniffle or sneeze!

A couple of days ago, I ran into the mom of one of Spencer's friends.  He is about a year or so in remission from Leukemia.  This week, he goes for his second CT scan in the year to make sure he is still cancer free.  Many of the things she feels, are not much different from my own worries and that is somehow comforting.  She knows the rising concern when her son complains of an ache or discomfort.  "Could the cancer be back?" She knows how it feels to anticipate a test and then the agonizing days that follow waiting for results. She knows the criticism from folks who think she has fragilized her son. She knows how to love him deeply each day because she has stared down death and won't let go without a fight.  She is not crazy, maybe I'm not either.

Friday, November 12, 2010

Silent Warriors

This has been a long week yet sped by at the same time.  Monday feels like forever ago.  The kids have been up and down with little viral annoyances or one thing or another most of which needed the attention of a doctor.  I took them all in on Wednesday afternoon.  Shelbie's platelets are running low again.  Not horribly low like we have seen in the past but they have dropped steadily since August, in fact dropped by 70,000 so now they are below normal.  I didn't really show much reaction while in the office but it was discouraging to hear. 

The following afternoon, when I completed my cleaning jobs, I headed to the library and ran some other errands.  It seemed that everywhere I went, I ran into other moms who have a child with cancer or who are going through chemo treatments with a child.  We know of each others struggles but don't really know each other.   We exchanged the international signal for mom's who take care of sick kids, a tender smile and a sympathetic nod and carried on our way. 

So much can be said in a smile and a nod to a mom who struggles with a child who is chronically ill. Without words, you know how they feel, you know of their sorrow, worries and anxieties.  You know the wearying battle they fight each day and yet, here we are doing what needs to be done and all with a smile on our face and no one is any wiser.  We are all Silent Warriors, a secret pact, hearts that are held together with these little moments when one and the battle they face is acknowledged.

Thursday, November 11, 2010

Baby Panda Sneezing

This is the cutest video.  I love how the mamma bear is just chillin' and then 'freaks' when her baby sneezes!  It's as if she is saying, "What the heck?!!"  SDS is like that sometimes,  things can be just fine and we are all chillin' and then out of the blue...someone sneezes!

Wednesday, November 10, 2010

Sufficient for the day

Yesterday, was a particularly difficult day and it sort of caught me off guard.  I guess after doing the mental and emotional calisthenics that we have been doing for an extended period of time, I was more exhausted than I realized.  I spent a lot of time just thinking about things and did some reading before going to bed at a very late hour. 

I read a passage in Matthew, a common phrase reminding me to 'consider the lillies'.  I've read that passage a million times, it has been a favorite since I was a teenager.  It starts out, "take no thought for your life, what ye shall eat, or what ye shall drink..for your Heavenly Father knoweth that ye have need for all these things."  It concludes by saying "take therefore no thought for the morrow; for the morrow shall take thought for the things of itself."  I really needed to be reminded of that.  I spent so much time worrying about a job, health insurance, financial issues, how I will pay for all these medical expenses, keep everyone happy and sane I was getting overwhelmed. 

I don't know how everything is going to work out.  I'm not sure how I will work and still take care of the kids.  I don't know how the bills will get paid today.  To look at the situation on paper, it is impossible and hopeless and if I worked 80 hours a week, it would still not be enough.  I need to do only what is sufficient for today.  The lillies don't do anything but stand there and grow.  The birds don't sow and the birds don't reap yet, they are taken care of.  Today, I am going to do only what needs to be done for today.  Though it includes a list of chores and errands, I will be glad to get the trivial things done that have been nagging me for months.  Manage what I can, let everything else go. 

Monday, November 8, 2010

Results

It's been an exhausting 31/2 weeks!  We finally got answers today!  Before I get to the results, I have a confession to make.  I wasn't going to say anything but told my kids today so now it's okay to blab it on a blog.  The Dr. called last Wednesday!  Ya, but I wasn't home.  Shelbie was though, looked at caller ID and it said 'Fred Hutchinson'.  She didn't know who Fred Hutchinson was so didn't answer it.  I checked caller ID and messages faithfully but I didn't recognize the name either.  I was so focused on looking for 'Seattle Children's' to show up.  Fred Hutchinson is the cancer hospital in Seattle where Dr. S does her research from!  For some reason, the message didn't show up until Saturday night.  She didn't give any results on the message, just that she needed to talk to me.  The rest of the weekend dragged and I only slept for 3 hours on Sunday night.  I was determined to swamp her with voicemails and messages until she called today. 
    
      On to results.  She said all three children have "empty bone marrow" meaning it is producing very few blood cells but there is no sign of leukemia.  The abnormal cells that have shown up recently are still there but they have not increased in numbers which is good that they are at least stable.  What does all this mean?  Well, we will have to be more attentive to getting their blood checked more often, every three to four months to be sure we are not seeing an increase in the abnormal cells.  She wants to recheck the marrow with another study as soon as the kids are out of school for the summer.  She is also beginning to search for a donor for each of the kids from the World Book.  The World Book is an international search that is done initially to see how many possible matches there are.  It is a service that is free.  When it comes time for transplant, then we will have to pay the big money to do all the detailed HLA testing/typing. 
    
      In about 4 weeks, we should have results back on the Mitochondrial testing so the waiting game begins again! Whew!  Regardless of the results, we will be going to Mito clinic in May when we return to Seattle for the next round of bone marrow biopsies.  Mito clinic will establish what testing needs to be done next if the DNA mito test comes back negative or we will be started on the Mito Cocktail if the test is positive. 
     
      She also requested that Shelbie and Spencer get some additional GI testing done as soon as we can.  It will help clarify things from where she stands.  We will have to iron out the process for getting all that done.  They are overdue to see their GI but that means a trip to Boise.  It may be something we can do here but more research needs to be done before that decision can be made. 

      At the end of the day, I am so relieved that we are not facing anything emergent.  It doesn't sound good, I know, but the alternative is worse.  Once the joy of this moment wanes, the reality is that their immune system is so depleted, even the smallest infection could potentially overcome them. She was surprised that they really are doing as well as they are considering how 'empty' the marrow is.  It is hopeful that for now, their bodies are compensating for the decreases.  I just pray they continue to do well but I know it can all change without notice.  For now, I choose not to even consider those possibilities. I know there have been many people praying for the kids and showing an increase in faith.  I know that those prayers have been answered.  Science can not explain how it is that my kids are not sickly when considering the state of their marrow and in and out of the hospital.  I know we are being watched over, there's just no other explanation.

     Of course the kids are relieved but it is hard to get too excited when they know that it was just one moment of victory.  There will be many more hurdles to jump and fights to win, that's just how it is with a disease that is chronic, rare and continues to have a mind of it's own.  Each one of those battles will be taken on as they come so tonight, they are guarded but happy!

Sunday, November 7, 2010

Wanna Help?

I know I have posted before about the Sullenger family.  I don't know them personally but have been interested in them since their only child died this past August.  They are in the middle of this awesome project to honor their daughter Preslee on her third birthday which would have been in December.  They are making tote bags for Primary Children's Medical Center PICU for parents who arrive in an emergency situation and need some essentials. You can visit the blog they have set up for this event here.  Once on their blog, you will see a list of things they are still in need of.  I just thought with the holidays just around the corner, you may be looking for a family service project to do and I think this is a great one!  Wanted to pass along a little cheer!

Saturday, November 6, 2010

Homeless Shelter





Last night we spent the afternoon and evening at The City of Refuge, a men's homeless shelter in Idaho Falls.  It was the best way to end a busy week.  I spent the day cooking and baking.  We arrived at 4:00 and got busy setting up chairs, filling water pitchers and getting all the food set out and warmed back up.  I was so proud of my kids!  They all jumped right in to work and didn't even have to be told what to do.  They even organized themselves for the assembly line of filling up the plates.  It was such a great feeling to be lost in helping other people.  We were all happy and enjoyed getting to know the director of the facility and some of the men who had been checked in for the week.  It is a very humble place, as you can tell from the pictures, they don't have much but boy, there was such a great feeling there.  God is watching over these people even though they are struggling through hard times. 

People started coming in around 5:30pm, dinner wasn't served until 6:00.  We couldn't feed anyone early because the director likes to start dinner with a prayer.  By 6:00, only a couple of chairs were empty and you could tell they were hungry!  There was a quite a mix of people, 4 women were there and the rest were men of all ages, the youngest one looked to be about 18 or 19.  One gentleman was excited to let us know that he had just gotten a construction job in Boise and would be moving there next week.  We spoke to another lady about her job doing laundry at the Shilo. Two men were completely deaf, didn't know American Sign Language so we were communicating with them in 'charade' form.  That was fun and I think they had fun with us too.  They kept coming up to the counter where we stood with big toothless grins and two 'thumbs up'!

The funniest part of the night came from Sam.  Bless his heart!  He kind of struggles sometimes when our usual schedule is altered so going down and being in a different atmosphere was a little difficult for him.  He was really stressed about putting potato chips on the plates.  He was nervous before it started and began feeling sick.  He asked me over and over again how to 'do' his assigned job.  I kept trying to reassure him that there was no way he could mess up.  Just before the prayer, he said to us, "Ahhhh! Ughh! this is so complicated, I know now why lunch ladies are so cranky everyday!"  When we got in the car, he said, "Well, that was fun but I know I don't want to be a lunch person when I grow up."

As we drove away, it was sad to see some of the people we had served walking alone on the dark streets, headed to who knows where.  I wished that I had a house a big enough to take them all home.  It was an awesome experience.  I want to thank my friend too, Kristi, who helped out with baking cookies to take, they were delicious and the guys loved them!  The kids want to go back again.  They think it would be cool to serve pizza because homeless people probably don't get to taste pizza too much.  I think we will save up to do just that!

Friday, November 5, 2010

It's not like I'm going to die, right?

No one has ever died from waiting have they?  Just checking...cause I feel like I may be dying, not sure though, could be the crawling out of my skin feeling, or the fact that I want to throw a chair out my front window!  Stick a fork in me cause I am DONE!  Done waiting, done being patient.  Seriously? Another weekend without knowing what is happening to my kids? 

Maybe today wouldn't have started out so rough had I not checked my email to find out that a friend who has a child with SDS and Mito was just told last night that her son has Myelodysplasia but because of the Mito cannot go to transplant!  Never in my life have I used the word 'unfair' but today, I think I will.  It's unfair that this single mother, whose husband has passed away, now watches her only child struggle with bone marrow failure, mito, and a heart condition along with failing eyesight.  He is 15 years old, and it's unfair.

Thursday, November 4, 2010

And then....I tripped

So, I continue on with my strong week plan.  Today, I felt like a boxer in the ring, getting ready for the final championship.  I stood in my corner, a spring in my step, my muscles were loose and pliable, I felt confident, ready for the challenge of the day and came out of my corner swinging.  A productive, positive outlooked dripped as energy spilled all out around me.  It was going to be a good day and then...I tripped.

That's right, fell flat on my face tonight!  Life crept from behind and delivered a quick jab to the heart of the matter leaving me on the ropes.

Last week, the kids had heard about a fundraising dinner that Red Robin was hosting to raise funds for a family whose son was just diagnosed with Mitochondrial disease.  They suggested we should attend to show our financial support.  That seemed to be a great idea and fit right in with my 'good deed a day' plan for this week to keep us occupied instead of wondering why we haven't received any results.  It was sort of a hassle getting there, the kids' homework took a lot longer than we planned.  It was nearly 7 before we even left but no big deal, figured we would get a table, eat, head home.  Never once did it occur to me that the family would be there.  Well, they were there.

As we walked to the door of the restaurant, the father approached us explaining that tonight, the proceeds would be going to his family to help pay for their son's mito treatment.  I said, "Yes, I read the advertisement, that is our reason for coming in tonight.  We are awaiting news on mitochondrial disease as well."
"Wow, let me get my wife, this is so amazing!"  He motioned for his wife, about my age, "Honey, a family going through mito testing!" 
We introduced ourselves and briefly explained the situation we are in.  We shared our Seattle experiences, they are seeing the same docs we are in Seattle. I shared where we are in the whole process.  She asked about insurance, income, symptoms.  It felt surreal, a duplicate life of ours.  Their insurance company dropped them when their son was diagnosed.  The medication is outrageously expensive.  We talked about my current jobless status and what that means.  The first person I have met who totally understood my quandry.  If I get a full time job, who stays home to take care of my kids and lately, that alone has become a full time job.  How will I pay for medication for three kids (assuming they all have it which I realize remains to be seen)?  She is doing what I assume I will have to do, start my own business of some sort so I can take care of me kids.  She confirmed that it is really hard to do that too.  The woman was truly amazing.  She is meeting with an Ombudsman of Regence to advocate for families who are struggling with mito disease to get affordable coverage.  She is meeting with fortune 500 companies like Melaleuca  next week to see if they will provide some vital minerals at a discounted cost. 

While still standing in the parking lot, her oldest son arrived who also has mito disease.  We were introduced to him.  A young man in his early 20's I think she said.  He was very nice, very shy and his symptoms sounded so familiar.  It was shocking to me. They may as well have been talking about my kids, Shelbie especially. 

Mito isn't just a big word I can read about on a website I stumbled upon through Google.  It's a face, a human, a family, financial devastation, a burden and heartache, a thief robbing children of any sense of well being and security.  A father working hard to provide for his family, a mother doing all she can to save her children, fighting for care, fighting for rights.  Mito became more than just a big word tonight, it feels bigger than life itself!

We exchanged personal information then went into the restaurant to wait. The lobby was crowded of course.  I felt like I was on a merry go round from hell.  The voices became abstract, strange and unfamiliar sounds that boomed through my head. I tried to get my focus but the room was spinning, I no longer felt as strong as I did this morning.  This is life, this could be our life and it just slapped me senseless!  Shelbie turned to me, tears streaming down her face, panic set on her jaw. "MOM, that's me!"  She turned and made her way through the crowd to the bathroom.  I couldn't hold my tears, they escaped without permission and there I stood, surrounded by people but more alone than I have been in my life. A wave of worry consumed me...my thoughts were scattered, how will I handle the news, how will I pay for treatment, what will happen if I can't find a job, what if I do find a job, how can I leave my children, how do I do this when I am all alone? Ughhhh...I never would have come if I had known it would be so hard.  The sad thing was, I couldn't be strong anymore.  I couldn't make everything okay anymore for my kids.  There was no pep talk to cheer them up with so, we stood, the four of us in our own world I no longer recognized.  A heavy, sad moment.

Of course, I composed myself, found my happy face and conversation turned to lighter topics like onion rings and bottomless fries.  I wish life could always be about onion rings and bottomless fries and the biggest decision to make?  Which dipping sauce to try, bbq or marinara!

We did find a way to enjoy ourselves.  That's the tender mercy I guess.  We have really bad, pitiful moments of grief but quickly turn our frowns...upside down and make the best of things.  Halfway through our meal, a different waiter came over, knelt down beside Shelbie and said to her, "Are you doing okay?"
"Ummmm, ya, I'm fine." and then I butted in, "Do you guys know each other?" Shelbie looked like a deer in the headlights, like it was some friend she was surprise to see and I was a little confused.
The waiter replied, "No, we don't know each other but when the most beautiful girl in the restaurant is crying, I need to make sure she is okay."
"Thank you, that was so thoughtful."
So......was he just being nice or trying to make a move on my daughter? Hmmmmmm......
It didn't take long to realize he was hitting on my daughter!  Yup!  When we left, he put his tray of food down, walked across the dining room, told her again how beautiful she was and asked how old she was.  At least he was careful to make sure she was over 18!!  He then asked if she would consider calling him and gave her his name and number.  Okay....get me out of the twilight zone! Unbelievable night in so many ways!  I bet you're jealous your life isn't as dramatic and exciting as mine?  Who needs reality tv when I provide all the insane entertainment one could possibly want?

Tuesday, November 2, 2010

Planning a strong week

As tempting as it is to hide out, lay low and prevent crazy from setting in because we are still waiting for results, I am reminded of a talk I heard once from Marcus Buckingham.  He suggested we need to "Plan a strong week. It isn't just going to happen on it's own"  What he meant by this is to build into the week things that will energize and strengthen you.  So how do you know what to plan that will strengthen your week?  If you look forward to something and time speeds up, then it's a strength.  If you can't concentrate on a project or job than it's a weakness.

I have tried to do just that.  Aside from the usual cleaning I have to do for people, I have planned one service activity each day for myself and the kids to do. Helping other people is something that energizes me. It is true, the best cure of stress and anxiety is to get out and help someone else be happy, accomplish their goals, feel loved and taken care of.  It's one of the great 'spiritual laws', if you want to get something, give it.  It keeps abundance circulating.  There is a lot I want in life which requires me to give a lot more and that is energizing to see this law come full circle. 

Even though I am planning a strong week for myself and pulling the kids along with me, they are struggling and I don't know how else to help them but get them into the thick of serving.  I found out last night that all the while I have been praying for things to be okay with the kids, one of my children has been praying that they are sick!  Try hearing that from your child! I'll admit it was a struggle to not shut them down immediately because sometimes, I just don't want to hear it but instead I tried to understand what that meant.  Even I don't realize how crummy they feel.  When all they want to do is sleep, I sometimes get tired of seeing them so lethargic and think if I prod them and make them get up to do something, they will feel better.  That doesn't work, the only one that feels better is me because if they are up and doing something than they must be okay, a little trick I play on myself so I don't worry.   No one, not even doctors really understand just how tired and sick they feel everyday either so having something like cancer, puts a name to the pain, then it's acceptable to rest all day but without a name, a diagnosis, they are just 'lazy'.  I guess I can see how they would feel that way but it's still hard to know what to do as a parent and even harder to see the despair settled in their quivering brow as they try to hold back the tears and be strong. I know that even people who associate with us on a daily basis only see a strong front and everyone seems okay but it's only a facade.  

I guess I need to be a little more patient and realize that this is just as hard, if not harder on them than it is on me.  There is definitely a learning curve to all this, not fun.