Thursday, March 31, 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 levels that high!  It can only get better from here right? Right!!! I keep telling myself that. 

Tuesday, March 29, 2011

Distractions

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.

Sunday, March 27, 2011

Well...

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 to have IVIG for the rest of her life.

I don't really know how to support her right now.  I told her that it's never too late to back out of this.  I just don't have a good answer of what we can do for treatment options at this point.  This is about the last resort next to a splenectomy but that comes with it's own set of 'ick' factors.  So, things are a little emotional around here tonight.  I have no idea what to expect for this week as far as the next chemo infusion goes.  I trust that Shelbie will make the right decision. I know that she communicates with God and that means alot.  She's an adult now, it's her body and she has to be comfortable with the treatment that she is receiving.  I have to support her and make sure that she has all the correct information and faith to make the right choice.   I don't know what the answer is.  This treatment plan is scary, it is a good chance at remission but it's going to come with a price- so will any treatment.  It's that proverbial rock and hard place. 

Tomorrow's another day....maybe a good night rest will make all the difference in her outlook.  She has been so strong for so long and still puts on a happy face whenever anyone comes by to visit so it's not surprising that she is getting a little worn out with the fight she has been in for the last 6 months.  I feel bad and wish I could take it all away but that's just not part of the plan...She's going to be okay... that I know.

Saturday, March 26, 2011

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!


Update

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 transportation of Seratonin and other chemicals the body needs but I thought fatigue was more related to her low red cell count and the fact she has no iron stores.  So, I guess you learn something new everyday and explains why she sleeps for the majority of the day- like 18-20 hours of the day.

I think it will be a quiet day as far as health issues go.  The itching and hives will continue to be a problem and I may need to take her in just because her arm is so swollen and red with big hives.  The Benedryl pills and Caladryl lotion just don't seem to be doing a good job.  We'll see what transpire.... Here are some pics I am catching up on.
Shelbie's new best friend- Gizmo.  This dog loves her!

Infusion day- Spencer and their friend Debanie came by at lunch time for a visit.  This was during the pre-med phase and she was so groggy.

A  better view of her Power Picc- this was the end of the day- not looking quite as chipper as the picture above, before all the side effects blindsided her.

Shelbie is horribly allergic to any kind of adhesive, even BandAids so I made her some of these arm bands to try to cut back on the amount of tape we have to use. Of course, it had to be zebra striped. 

Thursday, March 24, 2011

Perspective

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 Leukemia greeted Shelbie with a shy smile and wish to get well.  Finnian and his mom went throughout the room handing out hand made hats and scarves to all those who took time out of their lives to battle cancer on a playground in Hell. 

Next walked in Matt.  Matt, a 40 something man fighting brain cancer along with an unexpected divorce when just diagnosed with cancer.  Not only that, Matt has lost the use of the right side of his body.  Today, he brought with him his mom and his guitar.  Yes, Matt travels around the area, cheering up people with his guitar skills and wonderful spirit and voice.  Don't forget, Matt can't use the right side of his body, he plays the guitar with one hand.  He has a favorite song that plays at each visit...'If I Only Had a Brain'.  I have never heard a more beautiful song nor seen a more beautiful thing.  The kicker was when Finnian climbed up beside him and put his little 4 year old hand on Matt's knee.  His final number was a song by Ricky Skaggs- Somebody's Praying.  Ya, there are worse things than SDS. 

Finally, we met Eula.  Eula has been in the trenches since 2003.  She is full of cancer but comes every week for chemo just like she has for the last 3 years.  Her husband died the year she found out she had cancer and has been alone all this time.  Eula is cheerful, happy and hopeful that this is not the end, after all, she is only 75 years old.  Eula and I fast became friends...even exchanged numbers.  I believe she will live for many more years, her spirit is strong. 

Today was a gift on so many levels.  I saw the hand print of God on the lives of each person there and each one is definitely God's favorite and He has His highest attention on them individually!  You and I are God's favorite too!  It was just what we needed to rev up our hopeful and happy attitude to get through what now seems an insignificant 4 week round of chemo.

Tonight, Shelbie is not doing well physically but mentally, she is taking it all in stride.  The medication is helping to keep her sedated and somewhat comfortable, at least so she can sleep.  Tomorrow may be more of the same but we will manage just fine.  She is running a fever of a 100 but as long as it stays below 100.5 I can take care of here at home and we won't have to make a trip to the ER.  I'm not too worried, tired, but not too worried.  The boys have been so terrific.  I could go to bed, but I wanted to hang out with them and give them a little well deserved attention.  We are just starting a late night movie so I better run....

I know that so many people have spent months, maybe even decades praying for us and I know some feel helpless but prayers change things.  Maybe they don't change the physical features of a trial but they do change a spirit to something impervious to despair and that is worth so much.

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 homesick for home and Shelbie and Samuel. 
   
      Ever since then, chocolate chip cookies have become my comfort food when anyone is sick, sad, lonely or suffering with any other trial that comes upon in life.  This morning, I got up early to make a batch of my favorite cookies.  The infusion room at the clinic is a sad place to be all day.  There are some really sick people there and some really sad and tired people too.  It's awkward because everyone just sits there staring at each other and pretty much keeps to themselves.  I figure a basket of chocolate chip cookies will lighten the mood in that room today.  It will be a good ice breaker for us to get to know our neighbors and maybe lift the moods of everyone there, including the nurses.  I think it will be a good day...
 
      I couldn't help but think through the night...wouldn't that be just amazing if we got there and her platelets were at 100!  Wow, that would really be something...a little crazy...but something!  I like to dream big...hope big.... It's all good.

Wednesday, March 23, 2011

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.  That was the part when Shelbie got a little more anxious because she could feel it bumping around.  When they injected it with saline and heparin, she could feel it squirting through her heart.  Yuck....

It took about an hour and a half to get it done so that wasn't too bad.  Tomorrow will be a busy day.  Home Health is coming to train me on taking care of the PICC and will change the dressing.  Immediately following that, she will have her Rituxin infusion.  I started reading about the drug and side effects last night but promptly decided that that wasn't a good idea so I turned off the computer.  We are really going into this without any expectations or knowledge.  I haven't decided if that's a good thing or not.  Sometimes knowledge is power, helps you feel more in control of things but in the end, it's God who has to worry about all that.  So, an adventure is about to begin....  Okay....now for the pictures....just warning you.

Picture quality isn't great, sorry.  Spencer took it with his phone.  Getting ready to thread the tubing through. 

This should actually be the first picture in the series.  They were placing the guide wire first.

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 brain and how to tap into brain waves that will lower the heart rate, respiration rate and manage pain receptors.  I will also be doing guided imagry with her along with color therapy.  Hopefully, all these tools will allow her to stay calm and relaxed while they guide an IV line from her arm to her heart with the help of ultrasound.  Last time she had this done, she was asleep for it.  This hospital doesn't put you asleep.  I've seen a lot of procedures in my day and I will be honest, this one freaked me out the most.  I got to watch it last time and it was nerve wracking to watch.  Too bad I will have to be awake for it too... ;-)

Here is what is in my "Brain altering survival kit"...

Neuroacoustical music to lower her brain waves and slow her heart and respiration rate.  She will listen to this while I take her through some guided imagery to a place where she will hopefully be calm and detached from the pain

My trusty red Sony Diskman...or I could you use my old Ipod but this is classic and perfect for listening to mind altering music. This has been on many hospital trips....many healing experiences.

A little good humor.  I'm going to have to crank it up today...as my secret weapon, I am bringing Spencer with us.  He might be too nervous to contribute any great humor but I'm hoping he will be okay.  He will still have his face numb from the dentist- that oughta be good for a laugh....

Shelbie's favorite drink for afterwards...if she's a good girl!

If all else fails, I will promise her tator tots at TacoTime for dinner!  I am not not afraid to stoop to such low levels of bribery!
I will also be including a blue blanket and a super bright pink blanket.  When they begin the procedure, I will have her covered in the bright pink, it will knock the energy out of her muscles so she will feel too weak to tense up.  After about 10 minutes of that, I will switch out to the blue one to keep her heart rate and respiration rate relaxed....Interesting day....Not totally excited but ready for whatever comes.

Tuesday, March 22, 2011

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 hard to live with the good news, then the bad news, it's too hard at make assumptions and judgments only to find out you were so far off base.  Oh well, it never hurts to hope right?   The funny thing is, as I say this, or type this, my head is already spinning off into never never land wondering what it's all going to be like.  How sick will she get? Will she lose her hair?  How will this change the rest of her life?  How...what...when...why.....the questions, the judgments...it never ends.....bleh!  It's a horrible way to live so, I'm not going to live that way. 

Starting now, I am making my 175th attempt this year to stop placing judgment on things, especially when it involves God.  He can do anything right?  I've heard he can move mountains, part the seas and a host of other miracles so surely, he can get us through this right?  It's so trivial compared to other things he has done around this earth.  Why not?  I could feel guilty for getting a little discouraged or I can let it go and move on.  My favorite saying is, "It's better to stumble down the right road than to run down the wrong one."  I'm not perfect at anything but I'm good at trying over and over to get it right!  I guess that's just part of the process in becoming perfect. Ouch!

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.

One of the Bodies displays.  Check out all
those veins and arteries!  So cool!
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 specific preservation, you are able to see the finest capillaries and details of how blood is transported through your lungs and other organs.  It is amazing and perplexing to see and even more stunning to think of all that could go wrong but doesn't!  It was intriguing to see what cancer looks like in various parts of the body.  It is so incongruent because it doesn't seem so scary when seeing it all petrified.  In most cases, cancer is so tiny and hard to believe it wreaks such havoc.

The network of veins and arteries truly made me stop and think how blessed Shelbie has been that she hasn't hemorrhaged yet.  I mean, those cell walls are so thin and seem so fragile and when there aren't enough platelets to keep those walls strong it can cause devastating damage.  Sometimes, it doesn't feel like the hundreds of thousand prayers being offered are being answered but they really are.  My perspective changed a whole lot last night.  Things could be so much worse but God is preserving her body and her life each and every day!  Really, we should all be more grateful for a body that continues to function and fight even in the grimmest of situations like bad genes and chromosomes, even cancer!  It was awe inspiring!  I can't wait to go back again.  It feels like a holy place.  I know that sounds funny but to be able to see inside the most amazing design straight from God is awesome.  I am jealous of surgeons who get to see the live workings day in and day out!  Pretty cool!  Pretty cool that my kids are still around despite all the parts that refuse to work properly.

Sunday, March 20, 2011

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.

Friday, March 18, 2011

Limbo

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 taking baby steps toward remission of the ITP.  I say that cautiously and quietly.... The only reason I think this is because her Mean Platelet Volume is the lowest it's been since last October.  A low mean platelet volume can be an indication that there are fewer platelets being produced.  This is a good thing, in a sense, because when they are being destroyed, the marrow freaks out and cranks out thousands more to replace the ones being lost so the platelet volume goes sky high!  On the other hand, it can also be a bad thing, maybe her marrow is finally giving up?  You see what I mean...Limbo.  Stinks to be here, in fact, it's been downright discouraging.  It's not remission but it's high enough that the doctors put all the treatment plans on hold so we just sit and wait for something to happen. In fact, in chronic and refractory ITP, they won't even treat a patient if their platelets stay forever at only 50! Easy for them to say that 50 is safe.  It is still terrifying when you are the one living with it.  Here I am talking like I am the one living with it, really it's Shelbie but I feel her pain. Anyways,  I hate sitting and waiting, in fact it makes me crazy!  Seriously crazy!  I feel like I am sitting on a ticking bomb with no idea when it all goes KABOOMMM....AGAIN!!  I feel fidgety all over....you've never seen fidgeting like this....

  My whole life, Shelbie's whole life, the boys' whole life took a major detour over the last 5 months and it feels like we are just stuck...a little unnerving.  I feel like we accepted these challenges with as much grace as we could muster but I hate these feelings of being lost.  If she is on her way to remission, any virus of any degree or bacteria could very well start the cycle all over again...crazy place to be. 

Wednesday, March 16, 2011

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 sank and those words left a bitter taste in my mouth and an ache in my ears.  Honestly, it was hard to know how to respond.  He immediately tried to justify why they are there, trying to account for activities he has been doing that may have broken some blood vessels.  None of them were logical though it was a good try, he was probably responding to the panic setting in my eyes.   He has definitely cycled before with his platelets dropping as low as 75 but it isn't a prolonged drop and he gets back up into the 130 range or even higher.  Initially, I was tempted to drag him up to the hospital in a panic but once I was able to tone down the hyper feelings of anxiety, I decided to wait and see if they begin to fade or he gets more.  So far, there really isn't a change in how they look but he doesn't have any more so that is good.  It's really hard to describe just how crazy this can feel at times.

Tuesday, March 15, 2011

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's for sure!

Tomorrow's another day.  Hopefully Shelbie will be in less pain tomorrow and will sleep through the day like she has the last two.  I have to be with Sam at a marathon dental appointment and I hate to leave Shelbie if she is awake and sick.  It will all work out, it always does and I do have to remember that afterall, she's a big girl now!!

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 and dozens of sugar cookies then took them to some very dear friends of ours who are widowers.  We spent over two hours visiting, separately of course, with these wonderful gentlemen all in their 70's.  We wrapped up the evening with a quick soak in the hot tub.  The best days for us are the days when we are together making a best day for someone else. 

Sunday, March 13, 2011

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.

Saturday, March 12, 2011

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.  The risk of hemorrhaging becomes great.  So far though, she has not had any bleeding other than petechiae and a few purpura, we'll live with that!

Friday, March 11, 2011

Why?

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 why.  It seems like instead of just admitting these things, it's easier to walk around getting upset and frustrated with all sorts of dumb things in order to avoid the real things.  We've been doing that alot around here lately.  I haven't been myself lately, just feeling the effects of being the family shock absorber.  Instead of being honest with my kids about how I am feeling, I let the volume of the tv set me off because that makes sense right? 

So, I don't know all the answers to the why's and really I don't need to know all the answers.  I do know that next week, I am going to try to focus the entire week on better communication, better ways and safer ways to vent our frustrations and anxieties and teach my kids and me to be real.

Wednesday, March 9, 2011

Technology...blehhh

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 numbers and specialize in studying large groups of people with similar symptoms and use this information to discover new diseases.  At least this is how I understand it so don't quote me.  They use the DNA from these large groups to assess similarities in their genetic makeup.  Dr. King, our new Biochemical Geneticist believes that she can utilize her methods of research to study very small groups, like our family.  After some serious consideration and with the help of Dr. Shimamura, Dr. King has consented to study our little family.  Not only that, but she has offered to make us her first priority and is going to do it all at no cost to us or our insurance company!   Without the generousity of these great doctors, there is no way we would ever in this life or the next be able to afford this kind of help. 

Over the next couple of weeks, the kids' dad and myself will need to send our DNA and then the work will begin.   They already have the kids samples.  I am excited but nervous too.  I'm afraid of all the genetic problems they are going to discover in me yet it will help find better and safer treatments for my kids.

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 70's I'm guessing and since 2003 we have been meeting for lunch every now and then and going to quilt shows.  The past year, we have only seen each other at conferences or funerals.  She was so excited to see me and invited me for lunch.  I was excited to see her and didn't have the heart to tell her I was sick so I went for lunch with her but didn't dare eat much, mostly pushed food around.  I love having older, wiser friends!  She adds so much to my life and it was nice to just catch up with her.  I love her and the afternoon went a little better.
     Another friend invited our family to her condo in West Yellowstone.  That just felt unreal!  What an awesome gift!  We are going to plan to go in celebration of Shelbie finishing her first installment of chemo!  It will be something really great to look forward to!  I am so excited and can't believe the kindness- well, I can, they are a terrific, loving family!
      Tonight, a knock came at the door and there stood the RS President with boxes of sugar cookies, frosting and decorations!  She also had this super cool game!  A few weeks ago, she pleaded me to give her some idea of how people could help us.  So many people have wanted to help but how?  I love to have fun with my kids, I love to be silly, crazy and spontaneous.  I am running out of crazy fun things to do so suggested if anyone had any ideas of fun games or things they do with their own kids to bring everyone closer together to let me know.  It's really important to me!  Two sisters in our ward, who I don't even know that well, made dozens and dozens of St. Patrick Day and Easter sugar cookies, frosting and decorations!  It was better than Christmas!!! I'm serious!!  For now, I put them in the freezer but next week for FHE we are going to decorate those cookies then take them around to the nursing homes and sing!!! I can hardly wait!  We will also take some on the first day of chemo to brighten the other people that Shelbie will be spending the day with in the infusion room!  It was a great idea...I love it and love that they were so generous and kind!
      Finally, I went over to visit my neighbor and get an update on her brother.  We had such a great talk.  She asked me a funny question, if I was angry?  She explained that when her husband died, she went through the cycle of grief and anger was always hard to deal with.  I almost started crying all over again.  There was a huge connection and I felt understood.  Yes, I am angry.  I think the last two weeks I've been stuck in angry mode.  I'm not angry with God, I've never been angry with God.  I'm angry that my kids just can't experience 'normal'.  I get angry that time seems to go so fast. I am angry that I have to worry about 100 other things besides spending time with my kids. I am angry that I am angry....the list goes on.  When I think about it further, anger is just an expression of something deeper...fear.  I'm scared.  Let's be honest, it's easier to be angry than to admit fear.  That just feels weak and I don't want to be weak but sometimes, I am. 
     After all this rambling...it was a day full of blessings.  I am grateful for all that God did for me today cause he knew it was a tough day.
    

Tuesday, March 8, 2011

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 doing too well yesterday and today.  She can hardly catch her breath and just feels weak and shaky.  I'm not sure what that's all about.  I am about to take her for a blood pressure check, that might explain why she feels so dizzy and weak.  Her best friend in the entire world is flying in late tonight to spend the week here so that has given her something to look forward to.  I just hope she can hang in there.  I'm not sure what her platelets are at but she has some broken blood vessels on her eyelids and eyes so I'm sure they are pretty low.  The next few days before chemo will be interesting.

Sunday, March 6, 2011

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 for this week is that I will be able to face whatever comes with a positive attitude, an accepting attitude and just deal with it head on instead of using all my favorite tactics of avoidance.  A long time ago, I read a book entitled, Feel the Fear and Face it Anyways.  That's what I'm going to do this week.  I feel like I am ready to re-engage in the process.
   
   

Saturday, March 5, 2011

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 right!  In between all the conflict going on for me right now, I am thinking about what the next few weeks have in store for Shelbie.  I fear we are experiencing the calm before the storm.  Boy, I remember like it was yesterday, the first day of chemotherapy in 2007.  This week has also been trying to avoid what is coming.  Once she has her first dose of chemo, the rest of her life will change regardless of remission or not.  Chemo for Shelbie will be the difference between sending a Principal into a rowdy classroom to quiet everyone down, put some trouble makers in the corner or the Principal removing the troublemakers and kicking them out of school forever.  Everything we have tried up until now has been sending in the Principal but that hasn't worked too well.  Chemo will remove the troublemakers and they will never return.  The troublemakers are her immune system.  Hers is already missing some players so taking out more can only mean that for the rest of her life, she will need to be supplemented with IVIG once a month.  That is expensive and exhausting but it is what it is.  This is the 'suck' factor for choosing this option. 
      Once it has been confirmed that chemo needs to start and the date has been scheduled, we just can't look back.  Any 'what ifs' and 'maybes' will only be an exercise in futility.

Thursday, March 3, 2011

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's during this time that I have to catch up on all the things that were neglected the week before and it's overwhelming.  I have time to gather my thoughts and it's harder to stay in the moment.  I start worrying about all the other things that cause me stress in life and see no way out and that just creates a lot of fatigue. 
     This week has been particularly hard.  I have a lot of huge things going on besides the usual stressors I write here and it's taken a toll.  I don't feel grounded and really, I feel just a little lost in life.  I am not one to panic in life, I pretty much try to believe that things are going to work out but Tuesday, I had my first full blown moment of panic, well maybe it was more than one moment.  I think the last 6 years just finally started catching up to my conscious mind.  It's pretty much sucked.  I know that the sooner I just let the feelings come, acknowledge them then move on, things will get better. 
     So, until the next phase of Shelbie's treatment begins, which will more than likely be chemo, we will be hanging out trying to be patient with this process.  Fun!

Tuesday, March 1, 2011

Stories

       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 fundraiser that took place this past Saturday in Seattle.  Many lives were touched and connections made.  It was a time for her journey, her place in this world of chronic illness to be witnessed and much good will come of it.  Many people donated so much this weekend to help a great cause.  Over $36,000 was raised in just a couple of hours.   I will never be able to personally thank all those who gave so freely so that, in the end, my kids and many others will have a quality of life that is better than what they experience now.  It's exciting to consider all the possibilities.  Those possibilities lie within each one of us, each story that we live and share. 
      The blogging world has been a big part of my life.  I am able to connect with total strangers, learn from them as they post their own stories of tragedy and triumph, who aren't afraid to be real and honest.  I love what Christopher Robin once said to Pooh Bear, "If ever there is tomorrow when we're not together, there is something you must always remember. You are braver than you believe, stronger than you seem, and smarter than you think. But the most important thing is, even if we're apart, I'll always be with you."
      Never in my scariest nightmares did I think I would be watching my kids suffer the way they are.  As we hold on to each other through the good times and the bad, I can see how brave, strong, smart and loving they are.  What a blessing to know that we will always have that to hold on to as we continue to live our stories.