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Showing posts from March, 2011

Small Problems

Shelbie has encountered some small problems over the last couple of days.  Yesterday, her skin started oozing all around her PICC line and the hives are really bad.  By this morning, she had soaked through the dressing with nasty fluids.  Her fear was that she had developed an infection but it turns out, it was those darn hives causing a lot of problems. 

We are sitting here at the clinic and her pre meds are done infusing and they just hung the Rituxan.  She is sleeping comfortably right now so I'm hoping it will be a quiet day with few events to report on.  The nurses cleaned up the site really well but it looks like she will not be able to use adhesive anymore so they will just have to keep it wrapped with sterile guaze and I will need to change it every day so she doesn't get an infection.  It will make her much more comfortable. 

On a positive note, her platelets have tripled after just one treatment!  Today they were at 99!  It's been a long, long time since we saw…


Distractions are good, especially this week.  Shelbie spent the weekend pretty down and that was sad to watch but so far, things are going better.  My parents rolled into town last night and we had a nice dinner with them and had our neighbor down to join us.  It was nice to sit around and visit after a busy day and busier weekend. 
    Today, she woke up early to help out a young girl who is living on her own and pregnant.  She needed to take her to a doctor's appointment in St. Anthony.  Anyways, the time was well spent in serving rather than worrying.
    Tomorrow, Home Health will stop by for a dressing change and then we will have to have a heart to heart to decide what she is going to do about Thursday's chemo appointment.  I think she is in a better place and will continue but I'm not sure.  It's been harder the second time around that's for sure.


Well, today has been a mixed bag for Shelbie.  She is feeling quite a bit better from the side effects but the hives and allergic reactions are still a problem, a big problem.  Yesterday, I ended up having to call Home Health to come over and redo the dressing and lay down a layer of skin barrier.  The nurse was really good.  When she was taking the dressing off, the tubing slid out about an inch or so but she just stuffed it back in her arm.  As she was doing that, Shelbie flinched cause it sort of hurt and scared her some.

The skin barrier gave her about an hours worth of relief but today it is just as bad if not worse.  Tonight she is really struggling emotionally.  Her kidneys are hurting, she is having some pressure in her chest and she is just having second thoughts about continuing this process.  It just dawned on her how much this has the potential to change her life but not for the better.  It is destroying parts of her immune system.  There's a good chance she will have …

If I Only Had a Brain

I mentioned earlier about Matt, a man that came to visit while Shelbie was receiving her infusion.  He has brain cancer and because of treatment, has lost the use of the right side of his body.  I tried to video tape his theme song, "If I Only Had a Brain".  It isn't very loud so you have to listen carefully and he is actually playing the guitar with just one hand!  It was so inspiring, I could hardly choke back the tears. I hope you enjoy it. And yes, it's a little random for the first 10 seconds because I was scrambling with Shelbie's phone and wasn't sure it was video taping...and let's be honest, I stink at technology!


We made it through the last 24 hours with fewer problems than we anticipated.  Whew!  The medications keep things pretty much under control and she is fairly comfortable, all things considered.  Of course she is really tired and feels flu-ish but that is to be expected.  This morning, her color looks way better so that is promising. 

I was hoping she might feel like getting out and about this afternoon but doesn't sound like that will happen.  Having this dog around is the best therapy!  It makes me think I really do need to invest in another 'best friend'. 

On Thursday morning, there was a brand new study released on the effects of low platelets on fatigue.  I think it came out from the National Institute of Health.  Their findings stated that the lower the platelets, the more extreme the fatigue.  It didn't have a lot to do with the duration of ITP but the level of the platelets.  This was a surprise to me actually.  I knew the platelets had a lot to do with the tr…


I could spend my time with this post telling all about how horrible chemotherapy was today.  I could tell you about the horrible nausea and vomiting that set in just an hour into it today.  I wouldn't leave out the fact that an hour after getting the nausea settled down, she was overcome with extreme joint pain and a severe headache.  Pain so bad, there was no relief to be had and all she could do was wince and thrash in the vinyl recliner that seemed to stick to her restless body.  Hours past beyond the 3 or 4 they told us it would take with little relief until they had no choice but to complete sedate her and push it through.

Instead, I want to tell you about the unbreakable spirit in that room today.  I have always known that there are worse things in the world than Shwachman Diamond Syndrome and Immune Thrombocytopenia Purpura but my perspective changed a whole lot in the midst of our own little personal crisis. 

Finnian, a 4 year old boy just beginning treatment for Leukemi…

Chocolate Chip Cookies

Is there anything better than chocolate chip cookies?  No, there is nothing better than chocolate chip cookies. When chocolate chip cookies are around, they just make me feel like everything is right in the world.  Ahhhh, the power in a cookie!       When Spencer was 8 years old, he contracted encephalitis and was in the hospital in Boise for 3 weeks. He was having seizures non stop so they had to keep him sedated most of the time with Phenolbarbitol to rest his brain.  During that time, when he was awake, his vision was extremely poor and he had lost some hearing as well.  It was scary.  I hardly ever left his hospital room.  We did however, have a room at the Ronald McDonald House just across the street.  Every other day, volunteers would go to the RMH and make chocolate chip cookies.  The few times I left Spencer, to get some fresh air, I would walk in the Ronald McDonald House and the smell of those cookies was always so comforting.  It reminded me so much of home and I was so hom…

So it begins

Well, one day down, one more...or, maybe several more to go but one day is down!  I will post a couple of pics at the end.  If you have a queasy stomach, you may just want to shut er down before you get to the end.  They aren't horrible but it is a little freakish. 

Shelbie did okay.  She was more anxious about being awake and the different sensations of threading wires and tubes through your veins than she was of any pain.  She was a trooper though. (So was I ...just for the record...;-) In case you were wondering...) The nurses were great and had a super good sense of humor and that makes all the difference in the world really.  Gene, a male nurse was the one who did the actual threading, and Sue ran the ultrasound. 

It was very interesting to watch them guide it from her forearm all the way into her heart.  When they got up to her neck, the tube kept wanting to go up into her Jugular vein so that took a bit of coaxing to get it to move down so that it would reach her heart.  …

For today...

Sleep is overrated.  At least that's what I'm trying to convince myself of right now.  Between my arthritis pain, worrying about another dentist appointment this morning for Spencer, then Shelbie's procedure this afternoon, tossing and turning is where it's at. 

Everything happened so fast yesterday, I didn't have time to get my head wrapped around everything I need to do for Shelbie today.  She has been pretty anxious.  She tries to stay busy but you can feel this underlying agitation.  Last night, she tried to soak up as much water as she could- Her and Sam went swimming one last time, at least for awhile, then she came home and took a long, long shower.  With her PICC line, she won't be able to enjoy showers and swimming in the conventional way.  It won't be much different than having a cast on her arm.

So, for today, I have decided to hit her hard with my "Brain altering survival kit."  I've done a lot of studying and research on the brai…

I'll never learn...

Okay, so first off, I'm sorry I went off on the little errors that have been made between the doctor's office and the insurance company. I guess sometime between receiving the letter and this afternoon, things were happening unbeknownst to little old me.  What do I know right? 

I was shocked, floored in fact when I opened the garage door this afternoon to see Shelbie standing there waiting for me to come home.  The doctor's office had called and everything was cleared through insurance so they scheduled her for the PICC line procedure tomorrow afternoon and chemo will start on Thursday!  I guess if you are Facebook friends with Shelbie, then this is old news! 

I guess I'll never learn to stop judging!  I had really hoped that we were seeing remission.  I had really hoped that the reason everything was taking so long to get approved was because she wouldn't need it in the end.  I just need to chill and take what the moment hands me whatever it is.  It's too ha…

Amazing Body

I received word yesterday that we were not approved for the chemo drug because the doctor needs to provide more information.  I'm so glad that we have now wasted three weeks in this process.  It could be very maddening if I let it so I'm trying not to let it. 

Shelbie's counts are all over the place, up and down.  Not exactly a picture of remission but staying out of the hospital so that's a good deal I guess.  Yesterday, she had petechiae on her eyes and down her throat, it was a little disgusting.

Last night for FHE, we went to the museum to see the Bodies! These are real humans that have been specially preserved.  I have been waiting for this for so long.  I love the human body and as we walked through the amazing exhibit, how can one not believe that there is a God who orchestrated all the fine, inner workings of these bodies we drag through all sorts of life experiences?  They have a section that shows every artery and vein in your body.  Through some very specifi…

Can't help but wonder

I can't help but wonder if Shelbie is headed towards remission of the ITP.  Her petechiae is fading and though she had a big episode this morning with bleeding gums, it would seem her platelets are raising even higher than 30.  We will probably do another check tomorrow or maybe Tuesday.  I guess we are still daring to dream.

What would be really nice is if the whole nine yards would retreat into submission, the bone marrow failure and all the other problems she and the boys face day to day.  Even if one problem, the ITP is gone, it doesn't change the fact that she is still so depleted in all the other areas of her bone marrow.  We have to keep looking for the good and watching out for the continued blessings.  Remission or not, we will keep on keeping on...Life never ceases to be interesting or hard.


Limbo, in case you didn't know, is part of a theological term. It's a place where people go when they die but their fate has not yet been determined, hell and damnation or heaven. Though I am not referring to Limbo in religious terms it definitely feels like we are there right now as far as ITP goes. 

You know, one minute, you are minding your own life, doing what needs to be done and the next you are being tossed around with uncertainty brimming all around with no escape.  You become well acquainted with this even comfortable as you begin to realize that this is your new life to mind.  Acceptance becomes the name of the game and everything starts to click, you shift gears and move on.  It's not fun but it's fine.  It's at least better than Limbo. 

So here we are, welcome to no man's land.  Shelbie's platelets are holding steady at 30.  Good right? Ya it is better than 10 but miles away from normal and what does it mean?  I kind of feel like she might be …

Easy to forget

I just finished reading a great book called Left To Tell by Immaculee Ilibagiza.  It is a true story, a memoir of this young girl and how she survived the Rwanda genocide that took place in 1994.   Immaculee says, "Life was so good it was sometimes easy to forget that there was a war going on while other times, it was impossible to forget."

This statement resonated with me.  I guess everyone faces a different kind of war at one time or another in their life whether it be an actual war with weapons of mass destruction or a war within ourselves fighting addictions, demons from the past or health issues.  At times, life can feel pretty normal and we are able to forget about the broken genes and chromosomes.  Other times, it can not be forgotten.  Whether feeling normal or beaten by the ravages of war, I am always in a state of being hyper alert; on guard for what could happen next.

Monday night, Spencer casually informed me that he had a lot of petechiae on his legs.  My heart…

The rollar coaster continues

Shelbie continues to feel drained of energy and sleeps alot!  This afternoon, she had another CBC (Complete Blood Count).  To our surprise, her platelets took an unexpected jump to 30.  You would think we would be happy and excited about this.  Well, not to be a 'debbie downer' but it's hard to process this kind of change.  Do we get happy and excited because maybe this is the start of spontaneous remission?  Do we just be glad for the good news today but not get too excited because they will probably drop tomorrow?  That doesn't feel very hopeful yet to expect a continued improvement is hard.  We have been tricked into feeling that all too often only to have our hopes dashed with another blood transfusion.  That's really hard.  I guess I am guarded in my happiness.  It at least gets her into a little bit of a safer zone while the insurance company and doctor still try to figure things out with the chemo med.  This disease really does a number on your head that'…

Still Waiting

We are still sitting around waiting for something to happen.  You gotta love the suspense right?  Shelbie has been overly tired today.  I wish I could understand better how she feels when her platelets drop, her white count drops etc.  It's really hard to put myself in her shoes and sometimes that makes me a little less than patient, not that I haven't been patient but some days I just wish I knew better how to help her or console her.  She went to bed Sunday night at 11pm and didn't wake up until Monday at 1:30pm.  She was awake for just an hour, then went back to sleep until 4pm.  That's a lot of sleeping and that was without any medication that would make her sleepy.  

We had a great afternoon and evening.  We went over to a friends house after the boys got home from school and assembled 4 gift baskets for the fundraiser this weekend.  After that, we ran to a doctors appointment for Spencer then came home to eat a quick dinner.  After dinner, we decorated dozens an…

No expectations

Not too sure what to expect this week.  Tonight, Shelbie has a new development.  She is getting all sorts of canker sores in her mouth and throat.  I suspect that her white count has dropped and she is probably neutropenic.  Neutropenia is when the neutrophils drop to low levels.  The neutrophils are the young white cells that are called up to fight infections.  For some reason, this drop in neutrophils will cause mouth sores.  I don't think they would start chemo if she is neutropenic but I'm not sure.  At any rate, with all the insurance conumdrums who knows what will take place this week.  Something will have to be done but what?

I'm actually ok about it. Go figure. I am in a better place the last couple of days than I have been the last couple of weeks.  There's a reason for everything, that is one thing I have learned from all these trials.  We just have to be patient and wait for things to unfold.  Should be interesting.

In the air

A treatment plan...that is what is in the air.  We have been waiting for pre-authorization of the chemo meds.  I received a letter Friday afternoon stating that we had been denied authorization!  As I read the letter again, I realized it said we had been denied for the IVIG infusion which she has already been doing since last November!

Now, I'm a little perplexed.  How did this happen?  It seems that whoever was responsible for sending in pre-authorizations at the doctor's office, made a mistake.  An unfortunate mistake because tonight, I took Shelbie up to the hospital and her platelets are only at 12.  This feels a little like being up a creek without a paddle...

I don't know what's next.  Sadly, Shelbie needs to get these treatments started but I'm guessing we will have to start the whole process over again, this time authorizing the correct medication.  That could take another week, maybe more.  It will be a hard week if she has to hang out with counts below 10…


I heard a very long time ago, that you should never ask God why?  God will turn His back on a question like that because it just means you are wanting to start an argument.  I took that to heart so many years ago, I think I was only 13 or 14, not very old to be thinking let alone remembering such deep thoughts.  It has proven to be something I have needed as I go through these trials. 

I don't know why things have happened in my life the way they have.  I don't know why bad things happen nor do I understand why I am deserving of so many wonderful blessings.  Some days, I don't know why I haven't given up!  Well, I actually do know why...I am being tested and prepared for something awesome and I can hardly wait to pass this test to see what is waiting behind the next closed door. 

There is a 'why' that I really don't understand.  Why is it so hard to admit that things are hard?  Why is it so hard to admit to a moment or two of weakness?  I don't know w…


I really wanted to post Shelbie's talk that she recorded for the Butterfly Guild Fundraiser that took place in Seattle February 26th but I can not get it to upload.  I guess it's my dumb computer, of course it's not me, I'm so smart when it comes to this kind of stuff! ha, ha.  I will keep trying to figure that out.
In other news, today was a better day.  I am feeling better on all fronts.  I made it to the temple tonight and a 45 min. workout so I am a happy camper.  I was also spoiled by another friend today who provided pizza for dinner.  I don't know where I would be without all the caring friends, all the prayers and all the people who love us!
I had a lengthy conference call with Dr. Shimamura this afternoon and my 'wasband' (I don't like the term 'ex-husband') Dr. S has arranged for our family to be number one priority with one of the Nation's top Biochemical Geneticists.  Ya, this is a big deal! Biochemical Geneticists are few in numb…

From Bummer to Blessed

I hesitate to talk about the bad days because I really don't want any attention or pity or people to think I am falling apart cause I'm not, there are just sometimes bad days.  I guess if I don't talk about it, then I'm not really being honest about this journey.
     The last couple of weeks have left me in a funk.  Today was particularly rough probably because I was up the entire night trying not to get sick!  I think I cried off and on from 9:00am until noon.  I just felt so overwhelmed with my life.  I tried to pull myself together long enough to get to Walmart for essentials so I could finish the laundry before our company arrived. I cried all the way to Walmart and was even trying to dry my eyes up as I walked through the sliding doors.  I dragged myself through the aisles and probably looked wretched!
      I ran into a dear, dear friend of mine.  Of course, you always see people you know when you are not looking your best!  This friend is older, in her early 7…

Quick Update

It has been a nasty 24 hours as the stomach bug has found me but I have anti nausea meds so instead of just getting sick and getting it over with,  I am prolonging it and feel totally crummy but I have lots of committments today. 
     Anyhow, the process has begun for preauthorization with the insurance company and chemotherapy treatments.  As soon as they give us their blessing that they will pay their portion, Shelbie will be scheduled.  Right before that, they will place a PICC line, a more permanent IV so the infusions will be more comfortable as well as the frequent blood draws.  Strangely enough, Shelbie is allergic to tape, bandaids, anything sticky so I'm not sure how that is going to work out.  She was funny a few weeks ago, she said, "If God knew I was going to be going through all this why did he make me allergic to tape and bandaids?"  Who knows?  
     Today, I am trying to stay vertical, not puke and get my list of chores done.  Shelbie has not been doin…

Reigning in the Chaos

I succumbed to a little nap late this afternoon. Those who know me, know that I just don't nap.  I have a lot of reasons for not taking naps, mostly because it's hard for me to have down time.  Once I get into bed, I'm afraid I would never get out and that could potentially create more problems for me that I just don't need, plus I tend to thrive as a manic.
       With that said, it was good for me to have that hour or so to just rest my brain and my body.  I woke up with a lot more clarity than I've had all week.  I do need to get my head back in the game.  I need to do those things that will keep me energized and strengthened.  In a lot of ways, managing my kids health is like a full time job.  They are my employer and I have been slacking.  I don't want to use the words 'giving up' but I have certainly been not just physically fatigued but emotionally too.  I haven't been too patient this week, too attentive or too productive. 
       My hope …

I'm avoiding life

Truthfully, I haven't posted here in a couple of days which is really a long time for me mostly because it has been such a hard week!  I have always wanted my posts to be authentic as we carry on through each day but I have struggled with the concepts of editing and censoring.   I have been prone this week to censoring what I say to protect the innocent...I guess. ;-)  (The innocent being those who take the time to read this)
       What can I say that everyone hasn't already heard?  Shelbie's platelets are below 20 now and as far as a concrete date to start the next 'thing' goes, we don't have one.  I am guessing that this week, she will be back to low teens, even single digits, we will either end up in the hospital or at the doctor's office then schedule the minor procedure to place a pic line, then start chemotherapy. 
       I heard it said, "Never underestimate the trials God can give you." I don't know who said that but boy, were they r…
I guess we find ourselves in a holding pattern of sorts.  Shelbie's platelets have been dropping slowly and each day she seems to be feeling a little better from the steroids.  Yesterday, she had to work for a bit and that wore her out for the rest of the day.  I went out for an hour last night and when I got home, she had a fever, chills, and was still dizzy. 
     Today, she seems to be hanging in there.  These periods of time in between treatment are harder than one might think.  I am the type of person that can really pull it together under periods of stress, like when her platelets drop and she starts bleeding.  I am usually able to handle anything during that period of time.  It's hard, but somehow, I have this extra energy, and an extra capacity for managing things.  When we have a week right after treatment when things are not great but not bad either, it's tough.  I am able to get out of 'crisis' mode for a bit but then the life drains out of me.  It'…


I've been thinking a lot lately about stories.  Everyone has a story, chronicles from their daily interactions with life.  Stories can be full of adventure, drama, comedy and even tragedy.  It is in these compelling commentaries that we connect with one another and learn about ourselves.  Sometimes, we find a strength we didn't know was in us. Each story we tell, stamps the pages of our passport and tells the world we lived, loved, experienced and conquered.        Shwachman Diamond Syndrome has added an extra element to our story I never planned on telling.  Through sharing our life, witnessing the lives and struggles of others, our journey has been enriched. Though it's an adventure, it's not always fun and exciting.  Sometimes, it's a struggle, something that simply must be endured.  Whatever it becomes, it's a story, our story.        Shelbie had an opportunity to share parts of her story for the Butterfly Guild/ Seattle Children's Hospital fundrai…