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Showing posts from May, 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 lea…

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 sic…

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 …

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…

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,…

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'…


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…

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 disc…


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!�…

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 …

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 …

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 outsi…

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, ten…

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…

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 st…

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!

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 act…

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 abnormalit…

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'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 p…

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.…

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. WELCOME TO HOLLANDby
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 ve…

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 variet…