Tuesday, May 31, 2011

You're Never Too Old To Learn

On Sunday, someone at church said to me, "Kathy, when is it ever going to end for you?"
"Well, I guess when I figure out what I'm suppose to be learning and actually learn it."  Then I chuckled cordially and wandered down the hallway because, really, it was probably a rhetorical question and I'm quite certain she didn't have time to hear my real answer.

To be honest, I don't really have a good answer for her but as I have pondered on this question, I guess my sarcastic answer might not have been too far off. 

I learn something new about trials, God and how I respond to the various challenges we are faced with everyday.  Not a day goes by that I don't have some sort of 'ah ha' moment when something makes sense and a connection is made. I see why one trial or experience in the past prepared me for a situation now.  I see the big picture and I thrive in those moments...they are so energizing to me.   I'm not sure if I'm a slow learner or if this is typical. 

This morning, as I made Spencer's lunch and sent him off to work, I thought of how good he looks this morning.  He is getting some color back in his cheeks, his fever is gone and some energy is back.  His cough is much worse but that's to be expected I'm sure.  What I'm getting at, is that I heard the word pneumonia and all of a sudden thought the worse.  Long, drawn out nights of breathing treatments, high fevers and finally, an extended hospital stay.   While we did have to go through some of that, it really wasn't too bad and I recognize what a great blessing that is, especially for someone with such a broken immune system. 

I think we have so many preconceived notions about what a trial is going to be like before we even give us or God a chance to prove ourselves in that challenge.  I approach it with defeat and fear.  Not the best way but nevertheless, a human way.  I always tell myself after these moments of understanding and reflection that I will do better with the next trial and sometimes I do, sometimes I don't.  The fact of the matter is, I probably won't be done with these trials until I have learned all I need to learn and whether or not my learning curve is slow or fast, it makes no difference, it is what it is and I am probably right where I need to be for now.   Here's to more trials!  I know they're coming so I may as well buckle up for the ride.

Sunday, May 29, 2011

Better than imagined

Spencer is fairing much better than I had imagined.  Friday night was rough and I was wiped out this morning.  His fever is not spiking so high anymore which I am really glad for.  He is one of my kids that has always had problems with febrile seizures and even though it's been awhile since he had one, they are terrifying to watch and I always have this fear in the back of mind that it will happen again, especially with fevers as high as he has had with this pneumonia. 

He is really tired and his cough is getting worse but I think that is to be expected.  I really hope he continues to improve because Wednesday, he is scheduled to have his wisdom teeth pulled out.  This month is not going to be a good one for him to say the least.  Pneumonia, wisdom teeth extractions, a days worth of testing at the hospital sometime this week or next, then a bone marrow biospy the week after that!  Poor guy!  He seems to be taking things in stride.  The rest he has been able to get while being sick has actually been a good thing for him.

Friday, May 27, 2011

Never this...

Well, we have lived through meningitis, encephalitis, epstein barr and mono viruses, strep bacteria in the throat and in the joints and we have even dealt with the horrible C-diff bacteria that lasted for months, and months but we have never managed pneumonia before.  Well, until now.  Spencer's been battling what I thought was just a cold.  When he spiked a fever of nearly 103, I knew something not so good was up. 

Sure enough, he has pneumonia in his left lung.  Hopefully the Rocefin shot and oral antibiotics will take care of things since we seemingly caught it early.  Here's the scary thing about Spencer.  While Shelbie and Sam struggle to produce enough white cells to fight infection, Spencer produces enough but they don't know what to do with themselves when an infection strikes.  Chemotaxis is the proper term for what Spencer has going on with his white blood cells.  Only time will tell how his body will handle this latest set back. 

I always forget just how much something like this affects the other kids.  Shelbie was afraid Spencer was going to die because she has known people who have died from pneumonia and Sam is just scared he is going to get it so he is OCDing big time.  Even though it's not funny to see how worried he is, he is making my job easier when it comes to keeping germs off the rest of us.  He and Spence are playing a video game and each time they trade the controller, Sam washes his hands with antibacterial soap and a Clorox wipe then wipes down the controller with Clorox.  Bless his heart!

Looks like a weekend of movies and laying around...Oh and Clorox!


Pillar of Strength

I believe it was Hugh ONeil in his book A Man Called Daddy who said that often when the storms of life come, we want to be a pillar of strength but sometimes buoys are better.

This thought has come to mind a lot this week as I have felt more intensely, the erroding storms of Shwachmans.  I wanted to be a pillar of strength this week just like I always have been but I think I have finally come to realize that buoys really are better at sustaining life, at least my own life. 

Being a pillar of strength is admirable.  A pillar looks strong and supportive yet we never see what is happening below the surface of the swirling water and before you know it, that pillar begins to topple.  Buoys on the other hand, they just bob along, not trying to withstand the waves but going along with them just above the surface.  They never get swept under like a crashing pillar would do when it's foundation of strength is erroded away. Buoys ride out the storm, they are constant and can carry a weight, supporting way more than it appears possible. 

I really think I want to be a buoy.  Pillars of strength can be all too confusing.  How can one maintain such a rigid posture when churning chaos is all around?  Only Superman could manage a task like that.  I am no Super hero, just a mom trying to do my best to keep my kids as healthy as possible. There are times when I dip below the crashing waves for a minute or two until I find my footing again and that's no fun, let me tell you!  So, ya, buoys are where it's at, hold on tight and ride it out. 

Sometimes, I just wonder how in the world we got to this place of chronic illness... it's just so chronic!


Tuesday, May 24, 2011

Dropping us now?

Well, this post contains my biggest fear in life...perhaps I should say my biggest fear this year in my life cause I have lots of fears.  I just found out that our secondary medical insurance is dropping us.  That has been my biggest fear!  The insurance I have left is crummy.  A $12,000 deductible and prescription coverage that only covers $3000.00 a year in medication. 

Maybe not bad if you are a person who hardly gets sick but that isn't us.  (Just thought I would mention that in case you just stumbled upon this blog.)   No, the boys alone each have a prescription that costs me $700 a month...each, then add to that the remaining 15-18 prescriptions we get each month.  $3000.00 is spent withing the first two months of the year and I have to pay for the remaining.  My second insurance covered what my primary didn't. It's a long story why I lost it and even after spending an hour and a half fighting for it, it's a no go!

What happens now?  Well, I do a lot of praying, a lot of hoping and a lot of trusting that God is working out the details of this small problem.  Still gainfully unemployed and even with a full time job, it will make covering these medical bills slightly difficult, if not impossible. 

There is a silver lining, at least I'm going to make one up cause I just can't be down anymore.  The kids are scheduled for their bone marrow biopsies and a bazillion other tests and procedures the third week in June so some of the biggest burdens in the near future will be covered.

In the meantime, and in between time, I have to remain detached from the reality of this latest development and remember that God hasn't carried us this far to drop us now!  The insurance company might have decided to bail but I know that God won't!  I do know that...for sure!


Sunday, May 22, 2011

Yadda yadda

It's been a really strange week in our world of chronic illness.  Lots going on.  Topping the emotional roller coaster this week was my friend's funeral.  Ya, know I have never been through an experience quite like this one.  I usually attend funerals in which I heard through a phone call or the newspaper that the person had died.  This is the first time I have been through the entire dying process from beginning to end and then the planning of the funeral and so on. 

Truly, it tops my list of sacred experiences.  Never before have I really felt the presence of a life after this one but there is no denying it.  I use to believe it but now I know that life exists after this.  It takes a lot of the fear out of dying but at the same time, it makes me miss her even more. 

I can't tell you how many times I heard at her funeral, "She is in a better place.", "We should be happy for her."  I'm usually the one echoing those words but this time, I didn't want to listen to it because I'm not happy.  I'm not happy that I have to drive by her house and know that it is empty.  I will not hear her jokes, her laughter, her words of wisdom.  Whenever I left her for the day, she would say to me, "Remember, you are the chosen one."; referring to the fact that I need to remember that my kids chose me to be their mother and I chose them so I shouldn't let any intended or unintended criticism get me down. 

Last week was busy still helping to wrap things up, this week, there will just be a void.  Thankfully, I am going to be super busy.  Tomorrow is my day for blood donation.  Yes, I will be getting my blood drawn for the purpose of scientific research.  In the preliminary questions she asked us during the conference call, I already know I've failed and passed along some bad stuff to my kids.  I kept asking our doctor, "Is that bad?" in reference to my answers and she said, "Well, it's very interesting."  Hmmmm...can't wait to hear about the results...well, on second thought, maybe I can.  I just hope we find answers, not more questions.

Friday, May 20, 2011


I'm telling you...this month has about done me in.  It has been so emotional with so much going on and I have to say, I'll be glad when things settle down just a bit. 

I've kind of felt a balloon that was once full of air, bouncing along doin' what balloons do until along comes a mean, frowny clown and lets the air out.  It just falls to the ground in a wrinkly, cold, stretched out blob of rubber.  That's me this week.  My mind is mushy and tired from over thinking and over worrying and I feel deflated. 

I've been chatting with my niece via email and we were discussing some not so fun things she has gone through recently and she said something that made me stop and think.  It was very inspiring and I was glad for her bit of wisdom.  She said, "It's either science or God so why worry?"  What an interesting thought!

It's not like that's a completely new concept for me but hearing it in the way she said it, made me pay more attention.  There really is nothing I can do, nothing I can predict and nothing that will change our circumstances right now and all the worry in the world is not going to get me anywhere.  Why is it so much easier to say than to do?

I think I'm getting my second wind back so maybe that means you won't have to hear my whining anymore.  You can only hope...although, school is out next week...Ugh!  How to keep these kids busy?

Wednesday, May 18, 2011

Seriously?...Part 2

The strange week continues.  My Wasband and I had a conference call with Dr. Shimamura in Seattle last night.  We were going over the genetic studies that we have to send our blood for and signing the consent forms with her.  There is alot of paperwork to do and still to be done.  We also made sure the scheduling was being co ordinated for the kids bone marrow biopsies in June. 

She began going over the schedule for the week that we will be in Seattle but there were changes from what we had originally talked about and planned on.  Originally, we were to meet with the Biochemical Geneticists who diagnose and treat Mitochondrial disease.  My kids were diagnosed with a mitochondrial mutation this past February so meeting with these docs face to face was a time for us to get some education and see if there is any treatment we can do to prevent any future problems.

Ironically and out of the clear blue, we are no longer seeing the mito docs.  The moment she said those words, I felt so discouraged but what followed caught me really off guard.  She had a meeting with the Biochemical Geneticist and they feel that we need to meet with Neurology instead because the mutations of the mitochondria my kids have are in the nerves.  Hmmm...Neurology?

I told her of the events that unfolded this week with Spencer's continued problems and meeting my sister's friend and that her son's diagnosis was made by Neurologists because it is a nerve/muscle problem.  She too was stunned at how things have fallen into place.  We are both a little perplexed. 

In addition to our Oncology visits, we will see Neurology, Immunology and Endocrinology.  I might add that these visits are not because we need things to do in Seattle but because the kids are having so many issues that have yet to be resolved. 

On a side note, Shelbie has been so cranky today!  I know she's been depressed this weekend but she just seems to be sinking deeper and deeper into a sadness.  She wouldn't tell me what was bothering her until finally after doing what I do best...poking and prodding she confessed that she has petechaie.  Ahhhh, what now?  I thought about taking her in for a CBC but we decided to just keep an eye on it.  Her hands are still swollen so maybe the leaky vessel problem caused from the chemo is causing more problems than we think...Poor girl. 

I know we have to go through this, I just really hope that all this turmoil and worry brings answers in June. I can deal with anything but the unknown. 

Tuesday, May 17, 2011


This rarely happens to me but last night, it's as if my life just caught up to me and slapped me square across the cheek!  I didn't even see it coming and now I'm sitting here in a daze and thinking, Is this really my life? I mean, seriously?

We just seem to jump from one health crisis to another!  Wow!  I'm kind of tired.  I'm still in shock from running into my sister's friend at the grocery store (well, she's my friend now, I just hi-jacked their friendship).  There is so much to do, so much to think about and yet, I can't believe this is happening...all these similarities with Spencer and his friend and screwed up muscles. It's so surreal!  Maybe it's nothing but maybe it all points to something.

What next?  I just wish they could figure out once and for all what is causing all these problems for my kids, give us a magic pill or even two magic pills and VOILA...all better and they lived happily ever after...end of story...end of this blog! 

And as if all this is not enough, I have to bother with stupid, trivial things like trying to make a living, cleaning stupid houses, painting and doing all sorts of other meaningless jobs that steal away the time I want to have with my kids!  Argghhhhh...does all this whining make me look fat?  It probably will because I think the only thing that will bring any degree of relief to this week will be a big vat of frozen custard and good long cry!  Anyone want to join in my misery?

This too shall pass.....right? RIGHT??!!!  Of course it will...don't be ridiculous...it always does and we come out the other side with only a few bumps and bruises.  I just hate the bumps.


Monday, May 16, 2011

Strange Coincidence

Hmmm, so where do you stand on the whole issue of coincidence?  Do you think most things are just that, coincidence or just a random incidence with no meaning at all?  Happenstance? 

I don't think that things just happen because...  I think every circumstance, every person you meet is orchestrated with a higher purpose in mind.  Maybe I'm wrong.  Maybe I am overthinking what happened to us this afternoon. 

It has been a long a very emotional day with the funeral of my friend.  Finally, after rushing home to greet the kids after school, I grabbed Spencer and headed to the grocery store.  Our purpose in the trip was to get some protein powder for Spencer who is still having problems with his muscles.  We have been to the doctors countless times over the past three years about the same problem and no one can seem to grasp what is going on.  He works out at the gym and then can't use his muscles for weeks afterwards.  The pain is excruciating.  He worked out on Saturday and today, he can't straighten his arms, no exaggeration.  We were thinking that maybe some extra protein would help him recover faster.

As soon as we get in the door of the store, I see my sister's best friend.  They moved down here from Calgary a couple of years ago and I see her off and on and we say "Hi".  Well, today she was telling me that they will probably have to move back to Canada because her son who is Spencer's age is in the process of being diagnosed with a genetic muscle problem and the medical bills will be too big to manage down here. 

I inquired about the problems her son was having, how they found a doctor to make the diagnosis so quickly.  Her son just had a muscle biopsy a week ago to confirm the diagnosis.  I was telling her about Spencer's muscle problems and their stories are nearly identical!!  I was floored, speechless, scared.  Her son's issues just recently progressed to paralysis in his limbs that comes and goes.  Spencer isn't to that point yet and maybe it's not the same thing at all but that would be some amazing coincidence!  Everything else is the same, weakness and pain after exertion that lasts for weeks at a time and then subsides.  Feeling weaker instead of stronger when working out...it's all the same stuff we've been complaining to doctors about.  Her son even had the exact same blood test our doctor ran on Spencer just three weeks ago!!!

 His levels came back astonishingly high and Spencer's were normal but she said that they tested him when he was having the muscle pain but when they retested when the pain from working out was gone, it was normal.  That is what happens with the disease her son possibly has, it comes and goes.  Spencer's test was done two days after the pain had subsided and it was within normal limits. 

I feel strongly that this meeting was totally orchestrated by God and it is just the information I need to get Spencer to the right specialist and make sure we aren't missing anything.  He is definitely not normal and it's been eating away at me for so long but now I just sound like a complainer and the doctors probably think I'm nuts but I just can't let this go, not now!

Oh and get this....Her daughter had ITP!  So, their doctors are hunting genetic, autoimmune problems.  It's quite possible that her son's muscle problem is autoimmune and I can't help but think there are some connections to be made!  It would make sense that if in fact Spencer has the same disease or something similar that it is an immune function.

I'm sure I will not be shutting my brain off from this for days!  I am both terrified at what could be but relieved that I am not crazy and another boy, Spencer's friend, has suffered with the exact same problems but neither of them knew the other was in so much pain.  Here I thought I was going to get a little break from health issues...no such luck.  Looks like it's Spencer's turn.  The sad thing is, until we get to some specialists, I have to watch him in pain.  Well, this is a long post...but there will be more to come as I put the pieces of the past into this strange little puzzle of life!  What a day!!!

Sunday, May 15, 2011

All set and scary

I heard from Dr. S in Seattle yesterday and the bone marrow biopsies for the kids have been booked!  I am relieved to have a date but nervous at the same time. 

It has only been 6 months since their last biopsy but because the last one showed some abnormal cells that can develop into Leukemia or Myelodysplasia we need to reassess the situation closely to make sure they aren't getting into trouble.  They all had 'empty' marrow too so I'm a little worried that it will be worse and we will be just that much closer to Aplastic Anemia. 

I know there is no point in worrying about something still a few weeks away but it's really hard to not let my mind get the best of me so I am really trying to stay in the moment and stay busy.  While we are there, we will also be seeing Immunologists and Biochemical Geneticists and possibly Endocrinologists so it will be a busy time. 

I also got word that the Geneticist is ready to go on studying our family and needs my DNA.  I will need to get that done early this week so we can make the deadline for the next 'batch' run.  The study is done in such a way that they will be able to counsel with me on any abnormalities they find and mutations. Most genetic research projects do not allow communication to take place because it is strictly for scientific purposes.  This is a huge deal for me, my family and generations still to come.  I could find out some pretty scary things so I am anxious to see what happens.  There's lots to do in order to get ready for this big week.


Saturday, May 14, 2011

Which of these boys is not like the other?

I suppose you could say his African American friend but the correct answer is, Sam.  There are very few physical signs of Shwachman Diamond Syndrome but this picture shows one of the big issues we deal with.  Look closely at Sam's face. This was taken just the other night at his birthday party and they had just completed an hour of laser tag.  The other boys look like they didn't exert one ounce of energy but Sam is so flushed.  

I have never been able to get a straight answer on the dysfunction that causes my kids to overheat when they do anything more than just walking around but I know it's a common problem among SDS kids.  Sam has had moments when it has gotten pretty scary.  5 years ago, we went to a concert in the city and the auditorium was old and not air conditioned so it was warm but not unbearable.  For Sam, it was unbearable.  He got so red and hot and eventually became somewhat unresponsive.  His eyes glazed over and he was limp and floppy.  I rushed him outside and they called for a nurse that happened to be standing by in case someone in the crowd needed help.  We soaked his neck and head in cold cloths, got ice to cool him down and stripped his clothes off him.  It took a long time to get him cooled down.

The same sort of thing happens every summer.  He plays outside on most days and has to stop several times and sit inside with popsicles and ice just to keep his temperature down.  Summers are really hard on the kids.

It's funny because I don't really notice these kinds of things until I see Sam in a large group of 'normal' kids and then I see the differences.   

Friday, May 13, 2011

Could it be?

My good friend who I have mentioned over the last few days, passed away last night at about 6:30pm.  Just one week and two days after receiving a diagnosis of Leukemia. I was not at her bedside, though I could have been.  I chose not to go.  In my mind, her spirit was already leaving on Monday and gone by Wednesday night when I saw her. She was just a shell to me.  The light in her eyes was gone, carried away to some distant land.  It was so hard to sit and watch her body struggle to find the oxygen needed to move through her fluid filled body and sustain her tired organs.

 She was surrounded by best friends from many years past and I have only been a part of her life for the last year so I felt a little 'unworthy' to occupy space in her room.  Not only that, it is so easy for me to take on the grief and sadness of others, I just wasn't sure I could handle the weight of the loss those ladies were feeling.  I am kind of a private crier too, I rarely breakdown in public, tending to keep those uncharted emotions for my pillow at 2:00 in the morning when the house is still and the kids are sleeping. 

I can't help but wonder about one thing.  Last Wednesday, I took Shelbie over to say hello.  Carolyn held her hand and said, "Listen, when I get to Heaven, I am going to sort a few things out for you ok?  I'll see what I can do to make things better for you."  That really touched Shelbie and we stood there in awe at her faith and strength.  Could it be that as Carolyn drifted between worlds, she was working on pulling some favors for Shelbie?  I just wonder since her platelets were so high yesterday.  Probably not, I'm sure it doesn't really work that way.  God's plan is underway, not under revision but it's still a nice thought. 

I am so glad that she does not have to suffer anymore but at the same time,  a little selfish that she is gone.  I'm sure I will feel a little lost over the next few days as I wander in and out of her house, helping to pack things up and she will not be there with a funny joke, sarcastic remark, encouraging word or a reminder that I was chosen long ago to bear these children and their burdens and I can do this!  She will be dearly missed. 

A little good news

I never thought I would be able to truly post this message, at least for a long time, but I'm going to say it....
Shelbie is in remission from Immune Thrombocytopenic Purpura or ITP!!  Yes, it was made official yesterday when we went for her visit to the oncology clinic.  Her platelets were at 200! 

It was hard for both of us to believe.  As we were walking in, Shelbie said, "I just want to hear one word today, REMISSION!"  So, we basked in the joy of knowing that she will not bleed to death anytime soon and said 'So long' to chemotherapy!

Another piece of the puzzle became a little more clear to us as well.  Last Summer, Shelbie developed a strange lump in her neck.  I took her to three different specialists and no one could say for sure what it was other than a lymph node that was really swollen.  She was also sick every couple of weeks with one virus or another and then the ITP hit in November.  A couple of months ago, our doctor in Seattle suggested we start testing Shelbie for Myloproliferative diseases such as lymphoma.  I hesitated to do that, mostly because I didn't want to be yanked from my safe place in denial.  Last week, the lumps just started getting smaller and smaller and this week they are totally gone!  I'm sure it was the chemotherapy that resolved whatever was going on and part of me wonders if the lymph nodes were players in the ITP in some round about way. 

I am relieved that Shelbie made it this far.  Sitting in the hospital just two months ago, the only options our doctor gave us were not hopeful and his response when I asked him about the chemo drug was, "That's fine if you want her to die!"  He was so against it but I couldn't deny the feeling I had that it was what we needed to do.  I stuck to my guns and though it was hard and awkward and eventually had to bring in our Hematologist from Seattle to convince him, he consented to start the chemo.  Yesterday was my payday as a mother, knowing that trusting in God and listening to the Spirit does keep us in his tender loving care. 

As we left the appointment yesterday, I said to our Doctor, "So, do you think we did the right thing?"
"YES! It was the right thing."
"And she isn't going to die from the chemo?"
"No, she is going to be okay."

That's all I wanted to hear.  Of course, we are not out of the woods.  Chemo did cause a few side effects that may or may not resolve.  She now has leaky vessels and is causing water from her blood to spill out into her other cells so she has been dealing with a lot of puffiness but it's manageable.  It's too soon to tell if she will need IVIG to support her new immune system but we can handle that. 

Her other counts are not looking good but that's a tale for another post!  For now, we are giving thanks for God's mercy and enjoying a little breathing room.  I think I actually feel my shoulders sinking and relaxing instead of strangling my ears!

Wednesday, May 11, 2011

Thoughts on death

I know it's kind of a dark subject to be addressing but I have observed some interesting things about death and the dying process over the last week as I sit by my friend's bed and help her to find some comfort and peace. 

I can think of no holier place to be than by the side of a dying person. There are sweet moments when the world of spirits beyond meshes with ours.  You can feel it.  You can feel a stillness in the room that is engulfing.  You can see a distance and light in the eyes of one moving on.  Reverence abounds and you hardly want to move or blink your eye for fear of dulling the moment.  You want to lean over and whisper in her ear, "It's okay, just go, they're waiting for you and we will see you in no time." But instead, you watch the physical body take a natural course of action to close down for this lifetime. 

The shutting down part is not pleasant.  It is a helpless feeling and there is not enough morphine in the world to take away that struggle; the strain and distress that takes place because of the tugging of two worlds.  She drifts back and forth and in awe, you watch this dance that could only be orchestrated by God. 

I hope when I die, when my kids die, it will be a sacred experience, meditative, without worry or fear.  I hope I will be prepared whether I go first or my kids.  I hope I will be prepared to leave this earth for greater adventures. I know my friend is ready, just waiting for her body to catch up and complete it's process so she can go. 

Tuesday, May 10, 2011

Eat your veggies

Today, a mom from the internet support group that I am a part of for Shwachman Diamond Syndrome, reported that she had a doctor recently who suggested that the reason her child wasn't getting better from SDS was because he wasn't eating enough vegetables!  Seriously? 

I think all of us mothers agreed that if it was that simple we would be stuffing our children with rutabagas and parsnips along with brusselsprouts and yams!  If only... Sometimes the ignorance makes me laugh...I needed a good laugh today!

Monday, May 9, 2011

It's all in your tone

Sometimes, I hesitate to speak poorly about doctors because, well I have many friends who are medical providers and not all doctors are annoying and for the most part, I am very happy with all the providers we currently have and I have a good working relationship with them most of the time.  There is one that I sometimes butt heads with but we are learning each other's 'style' so it's coming. 

Yesterday, my friend had some "critical questions" to ask her Oncologist and wanted to see him and though she didn't tell me exactly what her questions were, I am pretty sure she wanted the reassurance that her pending death would happen swiftly and pain free.  I think she is a little scared as well and just needs to know what the final hour will be like.  I discussed the dilemma with her two best friends and decided that we needed to call the after hours number and get in touch with her doctor to let him know of her request.  I was delegated to do that since I actually know him. 

I made the call and explained that she had some critical questions for him and had requested that he come to the home to visit with her.  Apparently, the two are very good friends.  She made a comment earlier in the week that at every office visit, he would give her a kiss on the cheek because he thought of her as his mother.  Sweet, but after my conversation with him, I couldn't feel of his caring regard for her. 

He said he just didn't have time and "what's her biggest problem?"
"Her biggest problem?  It could be the fact that she can't breathe well, has had a nosebleed for 30 hours, she has a horrible cough...really, the biggest problem is that she is dying."
"Well, it's an ugly, ugly, ugly cancer, what do you want me to do about that?"
"I don't know, I'm just making the call because she doesn't have the energy or breath to speak to you herself on the phone and she has some concerns."
"Well, I'm pretty busy and maybe sometime next week I can make time for her."
"She won't be here next week. Thanks anyways."  then I slammed the phone down and all the ladies in the room fixed their eyes upon mine.

Let me preface by saying, I know doctors are busy, especially this doctor and I know that he probably doesn't have time to be making house calls but surely there could have been a better way of addressing this phone call than what he did.  He could have said, "I am so sorry, she is struggling.  This is going to get so much more difficult and I wish I could make it easier but we don't have many options left.  She is such a sweet lady and it's such a sad situation.  I am sure she has so many concerns, let me look at my schedule on Monday and see when I could work this out.  Perhaps I could call the Hospice nurse tonight and give her some ideas of making her more comfortable." but he didn't. Instead, he was basically obnoxious.

We all would have been grateful for a response like that.  Sometimes, it's how you say something that makes all the difference.  To him, this is just another text book cancer.  He knows all about it, he knows how it will end.  She just wants to be heard yet that seems like too much to ask after my conversation with her doctor. 

Somehow, some doctors have become calloused, uncaring and uncommunicative.  It's a frustrating problem and it seems harder and harder to find good doctors with old fashioned values.

Sunday, May 8, 2011

Waits for nothing

Shwachman Diamond Syndrome waits for nothing. It doesn't wait to cause it's ugly little problems when things are going well or less busy, no, the problems with this disease never take a rest, at least that's what it feels like. 

This week I will be slammed with Doctor appointments and other medical tasks for the kids.  Samuel has a couple of doctor appointments this week to check up on a couple of issues.  Spencer needs to complete some tests at the hospital and Shelbie goes in for her check up and to see if we need to sign her up for another 4 weeks of chemo.  Aside from that, we should hear back this week on our schedule for Seattle the first week or second of June. 

It's hard to believe 6 months has already passed and it's time once again for bone marrow biopsies!  Yuk!  That will be done in Seattle in June along with visits to Oncology, Immunology and the most important ones, Mitochondrial and the Biochemical Geneticist.  We know that the kids have abnormalities in all these areas of specialty but we don't know the extent so it will be good to know what else we are dealing with so we can correct the problems with more effective treatments if that is even possible. 

A couple of months ago, the kids were diagnosed with a mutated genetic sequence in the Mitochondrial chain.  To read more about that diagnosis, you can go here.  Part of the question now is if the kids need to undergo a muscle biospy to see if there are more sequencing problems in their mitochondria and to see if it's time to start the Mito Cocktail.  One of the only things that can help control the symptoms of mito disease though there is no cure and it is a progressive problem.  The mitochondria is like the scaffolding in our cells.  In people with mito disease, that scaffolding begins to crumble resulting in organ and cell failure.  It's extremely serious and something I am anxious to get resolved.

Finally, this week, I have to complete a mountain of paperwork in order to get help in paying for Shelbie's horrendous medical bills.  The help we have been getting runs out in two months then we will be on our own to cover the $12,000 to $18,000 in medical expenses each month.  That only creates a little bit of stress for me...sigh.  Finally, I will continue to do the needful things in assisting with the care of my friend.  So, it will be a busy time but it's good to be busy or at least anxiously engaged as they say.


Saturday, May 7, 2011

All These Things

I have missed my daily posts but I'm back...for a minute at least.  I have been swamped with dying.  I know, sounds bad doesn't it?  It is and it isn't. 

I mentioned a few posts ago that my dear friend was diagnosed with leukemia on Tuesday night of this week and was only given 2-4 weeks to live.  How does this happen?  One day she has an ear infection, the next day, quite literally, it's cancer?  It's been a really sad week and I have not been to bed since I woke up on Thursday morning...it's now early Saturday morning and things are already looking to be quite busy. 

I have been in charge of taking care of my friend during the night shifts but yesterday, the night ended up being all day long and into Friday night.  It is not likely that she will last 2-4 weeks, maybe more like 2-4 days.  Yesterday she was really bad and the Hospice nurse told us we had just a few lucid hours left with her to get legal tasks accomplished like revising her will, signing the power of attorney, selecting executors, and then wrapping up the other little details that are necessary for a 'move' like this.  Her other two friends and I scrambled yesterday to find all this information but the hours we needed dwindled away and by 9:00 last night, we still had not accomplished our tasks.  I've spent the better part of the night, taking care of her and getting some more paperwork done for today.

As the week has unfolded, I can't help but think of the experience I am having and question a little bit as to its purpose.  Do you ever go through something hard and horrible and have a breakthrough moment when you realize the purpose of the trial?  That is what has happened this week as I have watched the process of leukemia unfold and observed the nature of a human life shutting down, preparing the spirit to move on.

It is apparent to me that I will need this information, experience and knowledge for some distant day in the future.  In a lot of ways, it's been a scary thought.  A lot of things I have been able to do to care for my friend, I learned from the experiences I have had of raising my kids with Shwachman Diamond Syndrome.  It's the circle of life, the whole line upon line thing but I hate to think I am being prepared for greater challenges so I can grow even more. 

Wednesday, May 4, 2011

Here we go...

Life is not easy...duh!  It is especially hard this week!  Our own little struggles right now, though worrisome, seem to pale in comparison to what some special friends are facing. So for the next few days whether you are a religious person or not and regardless of your faith and beliefs, if you think about it, send a few prayers up to heaven on behalf on some very special people if you could. 

The Shwachman Diamond Syndrome world recently had a couple of children earn their angel wings.  For one family, this is their second child, I believe, that they have lost to the disease.  There are a few more children that have recently had bone marrow transplants or are just beginning the process.  One young man underwent a transplant last year but it failed so will need a second one in the coming month.  It's heartbreaking but I continue to hold out hope that these kids will pull through with flying colors.

A little closer to home, my dearest friend was confirmed to have Acute Leukemia.  She has refused treatment and has probably only a few days left to live.  I have been busy meeting with Hospice along with her other two friends so that we can assist her and help to keep her comfortable in her final days as she prepares to go home.  Even though she is at peace with the process of dying, it doesn't make it any easier for those of us left behind with a great void in our lives. 

Next week, a special young man who has been fighting bone cancer will be having his leg amputated and a special procedure done called rotationplasty.  A interesting procedure where they rotate and attach his ankle to become a new knee joint.  That is the simple, lay person description but it's really more intense than I just made it sound.  He is a brave young man with a super strong and loving family but what a trial they have had to face! 

I would never want to trade my trials for any that I see my friends having to face!  They are such strong people and so inspiring.  The hardest thing in the world for me to do is watch the suffering of others.  I wish I could make it all better for everyone but I guess it's through the struggle and adversity that we grow.  I hope as you go about your life in the coming days...remember these special people in your prayers.  Prayer does make a difference...it really does. 


Tuesday, May 3, 2011

Welcome to Holland

I posted this essay some time ago on my other blog but it's one of my favorite essays.  Emily Perl Kingsley does such a great job of putting all the feelings I have had at one time or another into such a great piece of writing.  Life doesn't always turn out the way we were hoping whether it's because of catastrophic health problems or something else that creates disappointment in our lives.


Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reservedI am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.


Sometimes... I get it.

I try, I really do try to maintain a positive attitude, to make the best of what we have to work with in this life.  Sometimes, it's just a white knuckle ride and all I can do, after I have done everything else to find peace is just hold on and wait for the light to come.  The last few weeks has honestly been a situation of just holding on until the sun comes up. 

Sometimes though, I get it.  I have a moment of clarity and understand why I have been given the trials I have, what I'm suppose to be learning from them and that seems to get me through the harder times that can feel so dark and overwhelming. 

Tonight, it became more clear to me what I have learned and how that knowledge can work not only for my good but the good of others.  A dear, friend of mine is laying in a hospital bed tonight with what the Doctor is saying, "Could turn out to be a pretty bad thing."  He's referring to things like Lymphoma, Bone Marrow Cancer, Stomach Cancer or any other varieties of cancer.  My friend is an older single woman, no family in the area and has never been married so there are no kids to be by her side.  As soon as I got word that she had been taken to the hospital, I went up to see how I could help. 

They were preparing her for a blood transfusion tonight and bone marrow biopsy tomorrow.  She was worried about her blood counts and what they could mean and concerned about her procedure tomorrow.  I was able to go over her blood tests with her and explain the function of each blood line and also share some insights on her bone marrow biopsy tomorrow.  Ya know, help her with some things to alleviate the anxiety beforehand and the pain afterwards.

As difficult as our life has been, I was so grateful tonight for the knowledge I have gained, that I was able to be with my friend for a few hours to make sure she was comfortable and taken care of.  I was grateful to my kids who could understand what she must be going through and were patient as I was gone from them for so long tonight so that I could help her.  I am grateful for the energy I had today...here it is after midnight and I have two more loads of laundry to finish before morning and while I could be grumpy about it, I am glad that I spent my time in better ways, serving my friend, coming home to serve my kids and learning more about why I have been given the trials I have.  It's always a good day when you can feel like you really made a difference to someone else.