Thursday, March 31, 2016

Heart Full

I've been trying not to whine today.  The struggle is real!  Just kidding.  Today hasn't been the worst day ever.  I've tried to invent some needs in people so I could do something beyond my own little world of hurt. It helps.

Let's see...a quick update.  Shelbie has been up and around some today!  Hooray for that!   She is still dealing with pain and itchy hives but she had a productive day. She is able to walk better. Emotionally, we are exhausted and our nerves are slightly frayed and it shows just a bit.  We try to keep the crazy tucked in but sometimes, it shows.  It takes a great deal of effort to pull it all back together.

She is experiencing some new pain in her legs and hands.  This is where it gets hard.  How do I know when I need to take her in, at least for symptom relief?  How will I know if this is just some passing thing or the disease advancing and worsening?  I feel like we have a bomb strapped to our chest.  It's feeling rather crazy.

Sam is doing better.

Spencer is not really doing much better.  He's working but sounds wretched and doesn't feel so hot either.  Another round of antibiotics is shredding the poor kid's gut.

The plan remains...a loose one.  Dr. Gundlapalli had given me his cell phone number so I could text him whenever I wanted.  He did instruct me to text him this morning so I did.  I wasn't exactly sure what I was suppose to say but low and behold, he texted me right back!  I couldn't believe it.  He reported that he has been working on her case since he saw us last week.  An hour later, I got a call from his nurse and got our next appointment scheduled at Huntsman in just over 2 weeks.  We will meet with our Oncologist and Dr. Gundlapalli.

At 8:00pm, I got a call from Dr. G.  He said, "I wanted to see how OUR girl was doing?"

Seriously?  This guy is working out of three different hospitals, has 3 medical degrees and a PhD and he is calling me at 8pm after what I'm sure was a long and busy day with sick people.   I've never known anyone like this.

He also had to let me know that our insurance denied the new plasma treatment.  Of course they did.  It's never going to be easy.  He said he is trying some other avenues and he thinks he has it worked out.  He said, "I want you to know that I am not treating  your daughter like a scientific experiment.  I am truly trying to help her.  I don't know that what I am suggesting is going to work.  I'm fearful it won't but I feel like we have to try, at least try to give her some quality to her life."

I replied that I trust him and believe that we need to try his suggestions as well and already, he has done more for us than anyone else around here has.
He said, "Oh, I am so humbled that you trust me.  I feel like it is my calling to help you; stay with  you on this journey."

Our interaction reminded me of how blessed we are.

I have seen so many great blessings the past few days.  I live in a community full of loving people.  Monday night, we spent two hours in a drive thru line at McDonalds.  They owner was donating all the profits for the day to help a family who was in a tragic car accident and the mother died.  She left behind her frail husband and special needs son.  I got a little emotional seeing the throngs of people who turned out to donate money.  They raised thousands and thousands of dollars.

Tuesday, I had to meet with a client I've been working with for a few months on various development projects and house plans. He is one of the area's most affluent people.  I love working with him because he's just straightforward and honest and he respects my talent and skills as a space planner.  We've done several spec homes together.   At the end of our meeting, he said, "This thing with your daughter, it's hard isn't it? You are struggling."
"Yes. It's the hardest thing I've ever done in my life.  Yes, I'm struggling."
With tears in his eyes, he said, "I feel like I want to help you pay for all her medical bills.  I can give you any amount of money you need so you don't have to worry."

I was so humbled by his concern and offer.  I refused his offer though.  Just the fact that he has trusted me with his projects and provides me with work is blessing enough.  It's just nice to know that people care.  Near strangers even! I was raised to be self sufficient and work hard and I try my hardest to live my life so I can support the kids and I.

Today, I had to meet with the Chief Officer of Operations at the hospital to go over some final furniture plans for the remodel I've been doing.  She has been so kind and when we were transported to Huntsman, called down to the COO of Huntsman to let him know her 'family' member was coming.  He actually came to see us last Wednesday.  He left me his number and told me that I could call him if we needed anything at all.  Again, she offered her help in our situation.  She has been so compassionate and caring.

It's amazing the kindness I have felt from people who hardly know me.  So...my heart is full this week as I see good in the world.

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Monday, March 28, 2016

Giraffe in a laundry basket

 I've never really seen a giraffe in a laundry basket but just imagine, its long, lanky legs all folded up with knobby knees poking through the holes in the side of the basket.  It's too big, the basket is too small, it overflows and spills out in an awkward way.

Physically, this is how I have felt.  Perhaps it's from living in a hospital room for nearly two weeks and sleeping in a chair for that long.  Last night, I was about to go crazy and had to move, do something physical.  It was threatening rain but I thought a quick walk and some fresh air would help me clear my mind.  When I announced my plans, Sam wanted to go and Shelbie didn't want to be left behind so she came too, in her wheelchair that Sam so graciously pushed the whole way.

It felt so good to move and stretch and feel like I had room to breathe.

It's been a hard weekend, one I wasn't expecting.  Spencer called me while I was on my way to the Women's Conference.  He started in the usual way, "Hey mom, so how's it going for you this weekend?"
"Alright. How about you?" I asked in return.
"Well, so, I was just wondering...is Shelbie still alive?"
"What?"

He went on to explain that the previous night, he woke up in a panic with the thought that Shelbie had died.  He was so disoriented, he couldn't figure out if it was a dream or real.  He tried to stay awake, waiting for a call from me to tell him she had died.  He drifted off here and there but he was sure I was about to call to tell him.  By the time he had to get ready for work that morning, he was getting anxious that I still hadn't called to tell him  his sister had died.  He went to work and every few minutes, kept checking his phone.  Later in the afternoon, I posted a picture to Instagram of our Easter egg dyeing project and he thought, surely mom isn't dyeing Easter eggs when Shelbie has died.  His dad had posted something as well but still, he couldn't figure out what was real and what was a bad dream.  He said he had been scared all day.  He was finally off work and decided to call.  After telling me about his hard day, he said, "Mom, if Shelbie dies, you will call me right?"

Man, that was like a sucker punch!  I haven't even started to process this with the boys yet.  It isn't that it didn't occur to me, but I can't even figure out how to start that conversation.

Later that night, a friend came over at 11pm.  She use to live here and was a great friend and influence on Shelbie during some rough teen years.  They became very close but then she moved away.  They've been gone 6 or 7 years but just moved back.   We just picked up where we left off so many years ago.

As we sat talking, she asked a series of questions, So, what is you need?  How can I help you? How do you want people to act?  I want to do something, I want to be helpful but I have no clue. How are you going to deal with this?  What happens now?"

I really appreciated her questions.  I appreciated that she wasn't afraid to ask the hard questions.  I appreciated that she wanted to hear my answers.  The answers reflected a giraffe in a laundry basket.

I don't know what I need.  I don't know what we need.  I don't know what Shelbie is feeling.  I don't what the boys are feeling.  I don't know how to help Shelbie in her suffering and I don't know how to help the boys in theirs.  I don't even know how to help myself.   We are all suffering in different ways. It all just feels so big.  I told her about Spencer's experience that day and then it was as if the news of this week hit me all at once.

This is bigger than me.  Bigger than I ever thought I would have to manage.   I don't know where to put it all.  I don't know how to act when I go out in public and our situation is known to more people.  I've been trying to act happy and cheerful but that seems odd in relation to what is happening and then Shelbie translates my happiness into 'I must not care that she is dying.'  I don't want to mope around in life either because that gets annoying.  I don't want to feel too much but I need to feel a little.  Basically, it's a giant size mess- a giraffe in a laundry basket. I have nowhere to put it all.

The only thing that really came out of the 4 hour conversation is that we are lost and confused.  Although, it did allow for Shelbie to start processing things.  She said things I hadn't even stopped to consider.  We made space for her to get angry, to feel sad and we witnessed her fear and tried to hold that for her.  Sam was sitting quietly and I'm sure his fall apart moment is coming soon.

Sunday was rough. Spencer ended up in the Urgent Care and he is really sick with Strep and bronchitis. It came on so quickly and he's been running a high fever with red hot joints that ache.

By evening, I was in a stupor.  I have never felt so exhausted and drained so I went to bed at 10.  Not even 30 minutes later, Shelbie came in crying and nearly hysterical because she has a huge knot under her incision and her leg is literally various shades of purple and grey, mixed with bright red hives.  I don't know what to do for her anymore.  All I can suggest are the basics, ibuprofen, ice, benedryl.  She wanted me to fix it.  I can't fix this. In that moment, I couldn't even come up with anything comforting to say.   She ended up leaving my room very upset and very anxious.  I laid there hating myself for not being able to bring her comfort.

We have some things to figure out.  Things I had no idea would be issues to address.

Today, I worked and Shelbie actually had a photo shoot.  When I got home, she wasn't doing much better but at least she wasn't angry with me anymore.  We were able to talk things out and we both think the swelling is more lymphatic fluid.  It can be pretty painful from what I've read.  We will try a few things today but if we don't find some answers, she will have to go back to surgery.



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Sunday, March 27, 2016

Miracle From Heaven

Happy Easter from us!

From cradle to cross...Everything he did was for our everlasting joy in life.   I too have known so many of his miracles.  I live with three of them. Jesus Christ's life, mission, purpose and atonement was God's work and glory.  Each of us, in our own little life and mission, is also a divine work, a sanctifying project, a reflection of God's glory.







My favorite artist is Liz Lemon Swindle I have many of her pieces in my home.  I added a new one to my collection and I can't wait for it to arrive.  

I have been distracted this year with the thought of angels.  It never occurred to me before, that when Christ suffered in Gethsemane, he was being watched over by an Angel.

In Luke 22:43, we read, "...there appeared an angel unto him from Heaven, strengthening Him."  Below is Liz Lemon Swindle's depiction of the moment when Christ was held up by an Angel.  Even Christ...as perfect as he was, even in his knowledge of the plan, had to lean in for Heavenly help.   It makes me feel better on the days when I really don't want to do this anymore. I know I too, will be held by angels, maybe many.
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We need this miracle from Heaven today and how grateful and indebted we are.

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Friday, March 25, 2016

Don't pluck the blackberries

We made it home last night.  We stopped off at an urgent care to see about Sam's "cringing" pain as he has referred to it all week.  I appreciate his patience this week while we've been consumed with Shelbie's issues.  His pains remain somewhat of a mystery.  The only symptom is the pain so until he starts running a fever, or more nausea than he has had off and on, we will wait and watch.  The story of our little life.

Wouldn't you know it, we get home and the stupid hives flare up again.  The IV meds work way better than oral meds do but..what's a mom to do?

So, today, I am feeling slightly hungover from the diet of adrenaline and fatigue I've been consuming for several days, actually since around 1994 I think, the day I decided it would be a good idea to start multiplying some horrendous genes.

This morning, in my effort to remain open and thoughtful, I read this quote from the poet Elizabeth Barrett Browning..."Earth's crammed with Heaven, and every common bush afire with God, But only he who sees takes off his shoes; The rest sit round it and pluck blackberries."

There's a lot to feast on in this simple quote.

Honestly, this morning, I woke up to the image I saw daily while at Huntsman, people hooked up to chemotherapy, their masks on, hats and head wraps and walked.  These people walk.  They don't just stroll, they walk with a purpose. Their yellow skin and sunken eyes are determined. They lapped around Shelbie's room for hours on end.  We were lucky to walk a few yards before fatigue was too much.

This morning with this image, I felt myself getting a little discouraged; a little woe to me.  These feelings may not be too abnormal given the situation we are in, but it's going to take some work to not dwell here.  The people we rubbed shoulders with this week cling to those IV poles as the hope that they will be healed.  Most of them will be.  Part of me aches that we don't get that chance too.

On the way home, before Shelbie fell asleep, we talked about where we go from here.  She is upset and scared the most poignant thing she said was, "I don't think I am ever going to feel any better than how I feel today and how am I going to run my business and work and accomplish anything feeling like this?  I want to get better."

I think she will feel slightly better someday soon, but she's right,  Things will progress and complicate her life and her days are numbered but that  number we know not.  These are not exciting conversations to have with your young adult child but my response to her was,

"So what?  So, what are you going to do about that?  Give up?  You could.  You could go to bed and never get out again and no one would fault you for that, you have major issues with the two most important organs in your body, your heart and lungs not to mention everything else falling apart. Or, you could do something to change the course of your life.  You could find your place and purpose.  You could get up every day and do one great thing with the gifts and talents God gave you.  You could be the person who inspires someone else.  You are much stronger than you think.  You can do this with the same graciousness you have lived your life so far."  That was my pep talk to her. And yes, I was taking notes myself since it's so easy for me to be a hypocrite.

"I just don't know if I AM that strong.  I'm scared." She responded.
"Yes you are...you are strong and you are scared. I understand."

This little quote from Browning was timely for today.  I guess you could even say it was my daily bread.  We might sit around today and just pluck some blackberries but I think we will also try to find a burning bush or two and when we do, we will take off our shoes and stand on the holy ground, knowing a loving Father in Heaven will make something good come out of this.

After all, it's Easter.  What a great time for a harrowing trial, a sacred suffering, a reminder that we are becoming more and more like our Savior, a little closer to becoming a disciple of Christ.

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Wednesday, March 23, 2016

Faith to not be healed

Last Saturday, I heard these words. "Do you have the faith to not be healed?" Just a 5 second sound clip from David A. Bednar, but I haven't stopped thinking about it. You know me, if something consumes my thoughts, I take it seriously.  In my sleeplessness over the past few days, I asked myself what that could possibly mean for us?

Yesterday, when we got the news that Shelbie does not have cancer, it became clear.  Do we have the faith to accept that healing is probably not going to be part of Shelbie's plan on earth?  Today, we are coming to terms with that idea.

This hospital stay is not going to bring any immediate answers.  The only thing it will have accomplished is stability in an acute infection of cellulitis and acute urticaria.  Tonight, the infection is controlled and easing up significantly.  The hives are not spreading as fast and in some areas, it is receding. They think that she will be discharged at some point tomorrow and we can complete the recovery from these complications, at home.

Today we've met with just about every specialty you can imagine.  I am learning a lot about the process here.  As a mom, I have a different agenda than specialists who are meeting her for the first time and facing an acute situation.  I have 23 years of worry and questions.  They have about 24 hours of worry and have a glaring situation to deal with.  I understand that better now.  Knowledge is power!  Education is everything, so I'm glad I figured that out.  It really has been amazing how they communicate so well with each other and these doctors are intelligent.  This is an amazing facility and my overwhelm has nothing to do with the treatment we have received here.  It's just my own ignorance and lack of experience.

Late this afternoon, we met the one guy we have put all our faith and hope and prayers into; Dr. Gundlapalli.  He is an immunologist.  Dr. Shami assured me that we would like him.  I love him!  Shelbie loves him.  It was such a relief when he came in the door of her room and said, "Is this the patient of the year?"

He explained that when Dr. Shami called him to see if he would consult with us, he received an email with some brief explanation of the situation we have faced this year.  He didn't think much of it until Dr. Shami called him yesterday to tell him that Shelbie was being transported here.  He immediately got a hold of her chart and as he read it, he felt horrified at everything she is facing that no one has addressed in the past year.  He is not only an Immunologist but he is also an Infectious Disease Doctor, and Allergist and an Academician.  He said that difficult and complicated cases like Shelbie's is his calling.  He said several times that he was honored and humbled to meet our family.

Honestly, that scared me.  He and Dr. Shami have never seen such a difficult situation in their 20 plus years of practicing.

With that said, he shed a lot of light on the biopsy.  It didn't show cancer but it showed some frightening things that possibly signal the progression to cancer.  Some of those same cells, are likely the cause of the nodules in her lungs.

He has officially diagnosed Shelbie with Common Variable Immune Deficiency.  I knew that was coming but it can be manageable, however, we have the more complicated variation.  Of course,  Coincidentally, I read a study last night, written by our Seattle Docs, Dr. Skoda-Smith and Dr. Shimamura about CVID often being one of the first things to present in Dyskeratosis Congenita. So, this diagnosis makes sense in light of things.

 However, it doesn't account for the enlarged lymph node situation.  He is headed in the direction of exploring Autoimmune Lymphoproliferative Disorder but honestly, he isn't sure.  Just a hunch, a place to start.  There is no cure for this disease.  It is rare and complicated and will progress.

He expressed his concern that he won't be able to provide healing for Shelbie.  We may be too advanced in this disease for him to do anything.  For now, he is going to take over her transfusions

 Because of her vasculitis and lack of veins anymore and the risk to place a port, he wants her to try a subcutaneous plasma that we will do at home, every week instead of once a month.  She needs to keep a more constant and continuous level of plasma.  He is very concerned, even worried that IVIG hasn't kept the lymph nodes from enlarging.  This process can happen in CVID but it's very rare and IVIG is the treatment...Shelbie isn't responding to treatment for the lymph node issue.

So, it's bad news.  In my heart, I already knew this was coming if it wasn't cancer.

Some interesting little acts of God occurred during our visit.  At first he was hesitant about keeping Shelbie on IVIG.  He said he wasn't convinced that the doctor made the right diagnosis that her immune system was abnormal.  When Shelbie was 5 we took her to an immunologist named Dr. Shigioka.  Back then, I was naive to the world of medicine.  She was nothing special to me.  She has since passed away but as soon as I told him about that visit and that she identified early on that Shelbie had immune issues, he got so excited.  Dr. Shigioka was one of the top Immunologists in the world and well respected.  Then, when I told him we had been receiving care at Seattle Children's he completely changed is mind and actually, is good friends with our Immunologist there, Dr. Torgerson.
He even said, "We are smart but not nearly as smart as specialists at Seattle Children's."  He loves Dr. Torgerson so he felt confident that he can take over from here since we have had top notch care from Seattle.  I always end up being amazed to see how God has carried us all along.  I feel humbled at this realization again.  And without a doubt, leaving our providers back home was absolutely the thing that had to happen.  If for no other reason, to feel cared about and receive the compassion and empathy of these amazing doctors.  It has given Shelbie such a new lease on life even though it was very bad news.  When he left, she actually got out of bed and took a wheelchair ride to the cafeteria to eat dinner as a family.  And, for the first time in a couple of weeks, ate half a grilled cheese sandwich.

Tonight, I'm tired and sad.  I'm anxious to come home.  The question remains, do we have the faith to not be healed?  This conversation has yet to be had with Shelbie but I know she can handle it.  She is stronger than she looks. How will we move beyond this now?  How do you live when you know with certainty that they can not turn this around with the technology and knowledge available now?  All they can really do is support her and provide some quality of life.

When there are more questions than answers, you live what you know.  I know that we will continue to make the best of things.  We will continue to grow together as a family and we will be happy.  We will make sure that not one moment is wasted.  Like I wrote in the heading of this blog, we will exhaust the little moment.  There will be overwhelming moments that may feel suffocating but after this week, I know those moments will pass.

I can find no words to express my gratitude to the many prayers, the visits, the text messages, the blessings, the love.  Some dear friends even sent a check to Idaho to pay for the repairs on my car.  I haven't had a car for three weeks.  Through a series of ordering errors, parts weren't available.   As we were getting Shelbie ready to transport they called to tell me my car was ready and it had been paid for in full!  I was paralyzed with gratitude and humility.

I found out tonight that my niece in Canada who is Shelbie's age is going in for emergency surgery in the morning to take care of a bile duct block.  My sister was afraid to tell anyone because everyone has been concerned with Shelbie.  I  feel badly about that.  I had to call my parents to tell them about their struggles.  It's been a really hard two weeks for our family.  My dad had surgery last week, my niece had surgery two weeks and another one tomorrow and my other niece had a miscarriage last week.  So many difficult situations we have been dealing with.  But, we have a strong family.  We can do this!  We will do this.  So...til tomorrow.



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Journey On

Yesterday morning, Dr. Shami from Huntsman called me.  He reported that Shelbie's biopsy was negative for Lymphoma or any severe infection like Tuberculosis.  The most common reason for enlarged lymph nodes to the extent Shelbie has them, is cancer, of course.  The less common reason is massive infection.  Cancer and infection live on sugar so when the radiated sugar of the PET scan lit up most parts of her body, the assumption was cancer.  How could someone have in infection for a year and not know it?

I didn't really know what to say when he told me.  I think I may have said, 'Are you kidding me?' and he said something like, 'I know, but I'm not kidding you.'

I'm quite certain he has never before spoken to a mother disappointed with the news that her daughter didn't have cancer.  I'm quite certain he hasn't experienced that disappointed feeling himself, many times.  He was perplexed and very concerned.  Shelbie has all the symptoms of cancer, clinically.  Even the surgeon had doubts it was anything but cancer after she pulled that golf ball sized node out.

When our doctor came in the room, I asked him if he had spoken to Dr. Shami and he hadn't, so I told him she was negative for Lymphoma.  Even he was disappointed!  What the heck?  It's the strangest feeling in the world that the one disease all human kind fears, was the easy and preferred answer for us.  A hard and horrible answer but cancer comes with treatment.  It comes with all sorts of information, funding, research...answers.

We have no answers. No treatment.  Now, we face the reality that something is happening to Shelbie and her organs are taking the direct hit. In my finite mind, I don't understand how a human being can function when every organ but maybe one, is effected with disease and unknown lesions.

I'm not sure if I would call it denial, ignorance or something else but even I didn't understand the seriousness of this situation until we arrived at Huntsman.  It's been among the top 5 hardest things of my life. On the way down, I seriously thought that they would start a new med, the hives would be gone by morning and we would be home and back to our somewhat happy life by Thursday.

Her last IV infiltrated on the ride down, they took the coban off to flush it and her arm was hot, swollen and full of hives. (Although...we aren't entirely sure these are even hives anymore but something else called Cesearea Disease)  They pulled it but had to start another one.  As one nurse was searching for a viable option, the other asked about the filtered IV? HUH?  I've never heard of a filtered IV.  She went on to explain that since Shelbie has holes in her heart and lungs, she should never have an IV that isn't filtered because it can cause a stroke otherwise.  The more I sit here, the dumber I feel.  I can take no credit for keeping these kids alive for as long as they have lived.  I have obviously been missing some critical points to their care. A testimony to me that we all live out our numbered days.

Tomorrow, they are sending in the Pic Team to ultrasound her arms and possibly start a Pic line or they may have to resort to a Port.  I hate both options.

It's a difficult situation.  Our first two hours here were quick fire questions and a host of physicians, fellows, residents, nurses, pa's, aides, students...All coming to see the most unbelievable case of hives and infection many have ever seen.  Poor Shelbie.  This surgery was in a delicate and personal place.  Being the modest and shy family we are...this alone has been traumatic.  To be exposed to so many people, literally circling her bed.  I felt sick and at one moment wanted to scream and push them all out of the room.

I felt so strong driving down here, even had the most amazing moments with my Father in Heaven and it seemed to slip away so easily and swiftly.

But, despite the difficulty. we will journey on.  I am continually telling my kids to be open to the possibilities instead of placing our own judgments on something before God gives it meaning.  I need to listen to my own wisdom.  Without a doubt...God has led us along.  I can see more clearly the reason for each perplexing thing we have endured.  We will remain steadfast and instead of murmuring, we will cry out for divine help...and...it will come.  I know it will.

Now...if I could just stop being so emotional and human...it would really help.

I feel the need to end on a humorous note...My boys are shoppers.  They love their clothes.  They can spend hours shopping.  Shelbie and I don't like shopping.  We hate shopping. However, Sam came with me last night to find Shelbie some comfortable clothes to wear in the hospital since we forgot to pack her stuff! (I know, there goes mother of the year award! Duh!) We passed a store we both like and in frustration I said, "I just want to go in there and spend an obscene amount of money and not care.  I'm so tired of caring.  What do you say?  Let's do it Sam! It will be so much fun!" It was shear sarcasm.

He stopped and said, "MOM!  Stop talking like that. You need to be responsible with your money.  This is not an appropriate time for a shopping spree. Do you have any idea what this is going to cost you? More than we have! Gosh! "

So, Mr. Reasonable saved our budget.  Sam is no fun at a time like this.


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Tuesday, March 22, 2016

This will be short. At 11:00 this morning, it was decided that Shelbie needed to be transported to Utah, back to the Huntsman Cancer center.

This morning, Sam wasn't feeling well and admitted that he hasn't been feeling well for three days. He has an onery pain in his lower right side. This morning, he couldn't even make it to school. I talked to our doc at the hospital and he said to watch him close for appendicitis. When we found out Shelbie had to be transferred, I couldn't exactly watch him closely from another State so he came along.

Shelbie is not improving from surgery complications. Still. We are in the bone marrow transplant unit and the rules are strict. Only two people can be in the room. The room is pressurized and temp controlled so now I have a wrinkle in my plan. There is no internet and no phone service either.

I'm standing outside in the snow typing this because I know people are worried.

Shelbie is very upset and anxious. It's been horribly overwhelming. I feel completely in over my head. We've already seen 6 doctors all from different specialties. So far only two people we've met speak good English. I forgot my hearing aid so their accents, quiet demeanor, anxiety, and total commotion is not working out well for me. I'm a little lost and out of my element.

The nurse said, "you better get to sleep, tomorrow is going to overwhelm you and there will be a steady stream of doctors through here. It's going to be tough."

We had to leave so quickly I couldn't get everything packed for Shelbie. I thought she would be in a hospital gown so I didn't worry. Actually, they prefer you wear your own comfortable clothes. So, I've been out trying to buy her comfortable clothes to get her through a couple of days.

Tomorrow we consult with the Pic team because the third IV infiltrated on the way down. We didn't catch it until they unwrapped it. Infection, hives, phlebitis, swelling covers her left arm. They found a vein in her right arm to restart the IV but it seems we are losing that one too.

I'm not sure what could possibly go wrong next.  I'm really struggling. I've lost my footing here. I had no idea it would be like this. One nurse pulled me aside when I escaped the room and she said, "it's a lot. You're doing fine! Don't get lost in the chaos of this."

Right. Well, blogging on a cell phone stinks! I will try to write more when I find internet again and phone service.

Thank you for the many prayers.

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Monday, March 21, 2016

No improvements

I wish so badly that I could report that she made great strides through the night and we get to come home.  Things have only gotten worse.

We tried to wean off some of the IV meds through the night but this morning, everything exploded and has spread to the other side of her body now.  Her third IV site is failing quickly with what they call an infiltration.  Without an open, safe vein, she can't get her much needed antibiotics let alone any treatment that may be in her near future.

This morning, her doctor and I discussed options.  He said we are swiftly running out of options.  He asked us how we felt about placing a port in her chest that would be used to deliver her meds and draw blood from. She has very few good veins left and now with phlebitis in both arms and third site on her arm starting, they have nowhere else to put the next IV.  The medications she needs are extremely hard on her veins. Our major roadblock is the fact that she has Vasculitis- inflammation of her veins.  It's constant and other than a few episodes of Petechiae, we don't notice the effects of that.  Little did I know, that condition could cause the biggest problem for us now.

The advantages to a port is that she would be in less pain for all the IV's she has to have and the blood draws.  The port is in a larger vein within her body.  There are huge risks involved...Infection being the biggest.  The second biggest risk is that her body would reject it in the same way it reacted to surgery last Tuesday.  We are between a rock and a hard place.  There are no easy answers and the light at the end of the tunnel is fading somewhat on how to help her with this massive infection.

Last night, I got 4 hours of uninterrupted sleep once I got laundry and taxes done so my energy is up and I'm feeling a little more settled despite the gloomy view, once I got back here early this morning. I'm so glad, because Shelbie is definitely done.  She is extremely upset with her situation.

While the doctor was in talking to us, she went into a reaction.  It was a blessing that he was here to see it because she always puts on a brave front when nurses are around and downplays everything.  He felt so bad and took quick measures to stop things and get a handle on her pain.  He reiterated that we can't start weaning off IV meds and we will likely be here beyond Wednesday.

Our Hospitalist here will continue to keep close contact with our team at Huntsman.  As soon as pathology is back, he will bring us the news.  I suspect that will be today or tomorrow.  He is conferencing with them to see about surgery for the port today or tomorrow.

So, we wait.  We pray.  We hope.

Here are some very closely cropped in pictures because their really are no words to describe the pain she is in.

Cellulitis 24 hours after surgery

Cellulitis with hives on top, 3 days after surgery. Imagine this, twice the size and now across her abdomen and other leg.  The top picture is what her arms look like today from the IV infiltration.

The vein finder they have to use to find someplace to put the IV- this picture was taken two weeks ago.

This is my view this morning just before another bad reaction. 

Today, this quote is what will keep us going.  From Richard G. Scott

 "Don’t let the workings of adversity totally absorb your life. Try to understand what you can. Act where you are able; then let the matter rest with the Lord for a period while you give to others in worthy ways before you take on appropriate concern again.  Please learn that as you wrestle with a challenge and feel sadness because of it, you can simultaneously have peace and rejoicing. Yes, pain, disappointment, frustration, and anguish can be temporary scenes played out on the stage of life. Behind them there can be a background of peace and the positive assurance that a loving Father will keep His promises. You can qualify for those promises by a determination to accept His will, by understanding the plan of happiness, by receiving all of the ordinances, and by keeping the covenants made to assure their fulfillment."
I am doing all I can to make her comfortable.  I have shared all my knowledge with Dr. Bates that I have about her disease and what has worked in the past.  He is such an amazing team player.  I don't understand why things aren't getting better.  It makes no sense to me.  I feel confident that we are doing every possible thing.  She is in the Lord's hands.  I have had thoughts about the purpose of this but those thoughts may be too sacred to yet find words to express.  Just a feeling I have.  I can see in some small way, that this is how it has to be for now.  
I had been asked last week to offer some service for today which I think I will follow through on.  I realize it seems counter-intuitive to spend energy elsewhere but I have faith that by so doing, our own situation will improve.  I'm willing to do whatever it takes to do the will of my Father in Heaven and heal my daughter. 
As Elder Scott says, serving without complaint is the best way to find strength and understanding.  It will free you from the dead ends of your own reasoning. 
So...this will be the plan for today and probably tomorrow, just try to do what I can and hope for better understanding.  For now, I'm feeling settled but I feel the rumblings of more struggle and tears just around the corner and not far from my heart. 

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Sunday, March 20, 2016

Updates

For the most part, today has been a little better.  Shelbie has been able to rest most of the day without too much bother. It was a glimmer of hope we really needed.  The doctor has been happy that the spreading has slowed right down and the infection seems to be breaking up slightly.  I really thought the improvements would last.

Tonight, things are rough again.  She ended up with an IV infiltration early, early this morning and now has Phlebitis from that.  They switched her IV at around 3am and things were better but tonight, she infiltrated the second IV.  It was an effort to get a new IV started for a third time.  Now, there is infection and phlebitis starting again in the second site.

Her body is slammed with trying to process so many different things going on, it just can't keep up.  There is really nothing more we can do for her but let time heal.  I really thought we might be able to go home tomorrow, and maybe we will but she has yet to manage this with oral meds which means, we can't go anywhere.  They tried her on oral Benedryl for the hives but those doubled in sized and spread even more so it's back to IV Benedryl.

Tonight I asked the nurse to completely sedate her.  I want her halfway comatose so her body can put the energy where it's needed.  It isn't helpful for her to be agitated and upset.  It just takes energy she doesn't have.  The doctor had orders for that kind of thing but somehow, you get in your head that you just need to 'fight' your way back to health so we've avoided most of what is available to us.  I think there is wisdom in 'resting' your way back to health.

I foresee another surgery in our very near future, maybe even within the week.  There isn't a healthy vein in her body so a port is going to be necessary regardless of what happens this week.

Anyhow...We had a few visitors this afternoon which really helped break up the long and wearying day.  It helps to not feel completely alone.

Shelbie and I have had some good talks about the whys of it all.  She is really worried if she is ever going to survive this let alone anything else.  Without really thinking, I said, "Well, I think this is God's way of preparing you for what might be coming.  We know what isn't working in terms of coping tools and where we need to shore up our efforts."

She agreed and we talked about how we can work together better to get through these incredibly hard times.  We agreed we get to be honest.  She can say a million times that she wants to die and I don't get to argue with her but just help her hold that thought for as long as she needs to.  I get to cry whenever I feel like, over anything I want and that doesn't mean anything other than I feel like crying.  It freaks her out when I seem less than pulled together.

It's a start.

Tomorrow is going to be a better day.  I am getting the pattern down of falling apart and that makes just enough room to pull it together and get back in the arena for several more days.  It's strange how breaking apart actually makes you stronger.  I see that happening though, in very small ways. It's a glimmer of hope really...emotionally speaking.

In the morning, we will talk to our doctor here about the logistics of getting to Salt Lake on Tuesday.  I'm not sure it's all that reasonable to travel if she should still be here in the hospital.  We can have a conference call to get pathology results.  We'll see.  If I had concerns about the level of care we are getting at our little county hospital, I would have been gone by now but our care has been the best we've ever had.  

My Wasband is going to take over the night shift for tonight.  I don't necessarily get to go home to sleep.  I get to go home and finish my taxes so Greta from the IRS still wants to be my friend!  I'll be back before the sun comes up.

Thank you to all the prayers and thoughts that have been offered on our behalf.  I know the prayers are coming from far and wide.  It's amazing to see.  We are really blessed.


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Admitted

It's been another crazy day or two.  I ended up having to take Shelbie back to the ER Friday night.  This infection and hives are growing exponentially.  I have never seen anything like it before.  By midnight on Friday, the decision was made to admit her.

I was having a really hard time.  They sent her for x-rays and a 'shadow' showed up that made the radiologist wonder if something like MRSA was setting in.  That was the defining moment when we all knew being at home would be a mistake.  I was really anxious about another x ray, more radiation. I was also really worried that all the treatment they were suggesting was going to make whatever she had going on, go crazy and run wild in her body.

This morning, we met with the Hospitalist.  I love him!  He is the epitome of compassion.  Dr. Bates was wonderful and patient as I brought him up to speed on her history.  I asked him about doing more harm with all the things we were doing to try to slow this infection down.  He said it was a very good question and one that he was concerned about as well.  He said, "If she has cancer, then there are definitely things that can aggravate that so I am going to contact your team at Huntsman's and we will fine tune our plan."  He also said he would see if Pathology was back yet.

So, the plan is, they have her on three different antibiotics, a probiotic, a morphine pump, IV Benedryl,  IV Pepsid, IV Phenergan, Zofran, Toradol.   Still...the hives are spreading along with the cellulitis.

The night was long and exhausting.  Shelbie was up all night in pain and discomfort. By mid morning, things got out of hand.  She was extremely sick.  Right now, she can hardly walk due to the swelling and pain so it was a chore to get her from the hospital bed to the bathroom.  For over an hour, she cried in pain, nausea and vomiting.  After a while, she fell to the floor and just laid there on the cold tile beside the toilet shaking.  The nurse and I tried to get her up and back to bed but the pain was too much.  I haven't slept since Thursday so it all became too much.  The nurse had left to call the doctor and I went out to get a couple of warm blankets to put under her head and cover her up.

While I waited at the nurse's station, a nurse came by to see how we were doing.  I told her things weren't good.  She said, "Let me go in and see if I can help her."

This nurse went in to the bathroom and sat cross legged on the floor beside Shelbie and stroked her hair.  Shelbie was sobbing and saying that she just didn't want to fight anymore, she wanted to die.
I couldn't stand it.  I lost it and ran out of the room and fell onto the counter outside her room and cried myself.  Another nurse came and put her arm around me and just let me cry.  When I pulled it together, I went back into the bathroom and that sweet nurse was crying and while speaking softly to Shelbie, telling her that she could do this.  She could keep fighting.  It was the sweetest moment I have ever seen.  Real compassion!  Outstanding love from the nurses today.

The three of us sat in the bathroom crying for another half hour before Shelbie thought she could make it back to her bed.  This extreme pain and nausea continued until about 2pm.  It was then that she finally fell asleep and things were under control.  Her dad and Sam came up and I went home to shower and change.  I've been able to get a 10 minute nap now and again but it's been a ridiculously long day.

Tonight things continue to get worse.  The doctor is expecting this to be the case.  We have a hunch that Shelbie is allergic to the surgical glue they used on her incision and that may be what is causing the hive situation.  The infection is a mystery but given that this girl is low on Neutrophils, has abnormal Lymphocytes, no B Cells and very few T Cells...there is nothing left to her immune system to fight this.

Her leg is starting to turn a dark grey around her incision.  They are watching her carefully and her doctor has made a couple of extra trips in to check on Shelbie and make sure she is as comfortable as possible. I so appreciate his care and attention as well.

Until you sit on a bathroom floor watching someone you love give up, there is a new depth to the words heartbroken.  This week has been a little too much.  I have serious concerns about what this coming week is going to bring.  We are suppose to be in Utah on Wednesday to get the results of the biopsy.  I am still torn on whether this is cancer or not.  Something is destroying her body and I have great fear about what the future holds for us.

I hate going into what is surely going to be a hard week, already feeling beaten down, exhausted and incredibly discouraged.  We have been strong for three months through this process and now we are tired.  It stands to reason that things are only going to get harder and harder...trials typically don't become easier.  Praying that my sweet girl can rest tonight and that tomorrow, things will be significantly improved.
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Friday, March 18, 2016

Worse Again.

Not much to this post other than Shelbie is worse than she was yesterday.

Yesterday, the cellulitis infection was about 6" in diameter.  Hives began covering the area even over the infection.  This afternoon, the fiery hot redness is easily 8" or more in diameter.  You can no longer see the defining line of the infection for all the welts.  Welts on top of Welts. Welts from her waistline nearly down to her knees, every inch of her skin.

Imagine the worst diaper rash you've ever seen...bleeding, weeping diaper rash and that is what Shelbie's leg and abdomen looks like...only it's obviously not diaper rash.  Obviously.  Benedryl is about as effective as Smarties.  

On top of that, the lymph fluid is still building up and that adds to her discomfort.

She doesn't complain.  Shelbie sleeps about 21 hours a day.  She has zero energy or stamina.  When she is awake, her brain function is slow.  She isn't taking pain meds or anything else that would have the effect of sleeping.

I feel like her body is trying to process so many things right now, it is shutting down.  Not literally...because that would mean she is dying and she isn't dying but what energy she does have is being used for the most crucial functions right now like keeping her heart beating, respiration etc.  There is literally, no energy to spare. During the three hours she is awake, she feels too nauseous to eat anything but maybe a little ramen.

I'm at a loss as to how to help her.  I have no idea how she can sleep with what looks like an extremely painful situation. Even her clothes touching her skin from her waist down is painful.

Monday, we will see the surgeon again to see if they need to open her back up to seal off the lymph vessels.  Part of me wonders if I should drive back to Huntsman and take her to the ER.  I love our surgeon here and family doc but I worry that we are losing continuity of care.

It's worrying me immensely.  Shelbie has a condition called Dysautonomia.  Her body can't effectively regulate its own autonomic nervous system.  When things get revved up, she can't regulate it.  Hives fall into that category.  I think that because the surgery was so invasive, her autonomic nervous system was so shocked it reacted with hives. There was one time a few years ago that she had hives for more than 6 months! They covered her body.  That can't happen again, not on top of everything else.

I got a little sleep last night which helped.  I have only slept about 12 hours total all week long. I can do that if needed but emotionally, I'm done.  Yet, I can't be done.  Shelbie isn't done.  She is brave, so me whining about being a little tired hardly seems appropriate when her suffering is so much greater. She needs me to appear strong and in control of this situation.  She goes to sleep and trusts that I will be close to keep an eye on her, make sure she doesn't stop breathing.  It's heartbreaking and we haven't even gotten to the hard part yet!  However they decide to treat whatever is happening to her with the enlarged lymph nodes is going to be challenging to say the least.

Ugh.
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Thursday, March 17, 2016

And another...

Another incredibly hard day today.

Last night, I ended up taking Shelbie to the ER at around 1am. It wasn't because she was asking to go.  She has been more than patient with things.  I keep saying, "Let's see how it is in an hour."  or "Let's wait until morning, I'm sure it will get better." And she believed me.  She trusted me.

Close to midnight, I had this strong impression that we shouldn't wait until morning to be seen. Even with strong impressions, I tend to err on the side of conservative because I've been conditioned by doctors who have made me feel like I made mountains out of molehills.  So, instead of always feeling like a 'frantic mother' even though I never act like one, I always wait things out longer than I should.

Honestly, this disease embarrasses me!  I avoid regular tests and check ups that specialists have advised me to do because I can't stand people thinking I drag my kids from one doctor to another just because I seemingly have nothing better to do and 'want' them to find something else wrong.  While I know this is the farthest thing from the truth, the judgments I have lived with have been painful.

My kids have a joke among the three of them, "Don't bother telling mom you feel sick, she won't do anything about it anyways." It's not a joke at all...sadly, it's true.  It is something I have struggled with forever.

This experience with Shelbie, if nothing else, has taught me that I really could care less anymore what anyone thinks of me.  People/Doctors can judge all they want about the way I have chosen to raise my kids and take care of this impossibly rare disease.  They don't live here.  They go home at the end of the day to their comfortable life. So, I grabbed my coat and went to let Shelbie know that it was time to go to the hospital.

With that rant over...

Shelbie has a very serious tissue infection called Cellulitis. In someone immune-compromised, it can be life threatening and move quickly.  The ER doc also felt that she had a build up of lymph fluid from the trauma sustained from the surgery.  He asked that we have a surgical consult today to see if the area needed to be drained.  He also thought there was bleeding deep in the tissue causing a hematoma. So, they were quick to start IV antibiotics, morphine, toradol, and phenergan to calm things down.  He was so good with her!  I really liked the ER doc.  Of course, we always have a good experience with the nurses there.  We were there most of the night.

This afternoon, we spent our time at the surgeon's office.  Dr. H is our family surgeon.  I know, not many families can say they have a family surgeon.  About two hours before we saw him, Shelbie broke out into hives...everywhere!  Huge welts.  They even covered her cellulitis and incision area, stomach, down her legs.  The poor thing is miserable and her leg is on fire. It really altered the way the cellulitis looked.

He did an ultrasound and she does have fluid building up but he thinks her body is trying to manage it on its own.  He explained that there are all these tiny branches of lymph tissue that drain into the larger one that was removed.  The ends of these lymph branches are open now and the fluid has nowhere to channel to so it just builds up.  The body needs to create a 'lymph seal' to stop the build up.  If it doesn't, then he will need to go back in and surgically close the ends of each little branch.  He feels like that is slowly starting to happen on its own.

We will see him again on Monday.  On top of everything, Shelbie is struggling with discomfort and pain and simply exhausted.  So, we wait.  We wait and see what happens next.

It's just another hard day.  That's all.  Just plain hard.

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Wednesday, March 16, 2016

Post Surgery

Today has not been a good day for Shelbie.  As she said earlier, "This has been the most traumatic 36 hours of my life."

Last night, the area around her incision started getting really swollen and red/purple.  It had definitely doubled in size from a couple hours right after surgery.  She was frantic about it.  I couldn't tell if it was hot to the touch or not.  Nothing I tried would calm her down.  I finally convinced her to take something for anxiety and try to sleep.

By morning, it was the size of an orange so I called the nurse to see what we should do.  She had me send her a picture which I did.  After she consulted with two other nurses, and two Residents, they had no clue what was happening.  "Honestly, we haven't seen anything like this before."  She paged the surgeon and the consensus is there was a significant amount of damage to the surrounding tissue and it's likely deep bruising more than infection but if it continued to get worse we would need to take her to the ER.

Tonight, it is the size of a grapefruit.  You can see it bulging through her pants and she feels like she is feverish yet the thermometer reads normal.  But...my kids are notorious for not registering an increased temp even when really sick.  We may end up at the hospital after all except we are home now so it's going to be a giant headache to take care of it now.

Shelbie has been in major pain and discomfort.  We stopped every hour on the way home so she could get out and walk so we don't have to deal with blood clots.  At one stop, she wouldn't get out of the car. "I know you are in pain but I promise you, a blood clot is not what you want right now so get out!"  Except...I said it with a smile on my face...which means it didn't have angry overtones to it. I think I may have actually been half laughing.  Still, she shot me a glare and under her breath said, "You are SATAN!"  But she got out of the car!  And someday, we will look back at that and laugh! I'm sure of it.

Shelbie is funny by nature and quick witted not to mention she can almost out play me with her sarcasm.  Even when she is feeling  her worst, she is making jokes, except the minute we all start laughing, she falls apart into uncontrollable crying and then we feel stupid and it's just sort of crazy.  So, that's how the day goes, laughing one minute, crying the next.  Everything is way out of scale and proportion.  Nothing makes sense.

Last night, she wanted to get out of the hotel and go somewhere for dinner so we took her in our new wheelchair I purchased a few weeks ago.  The whole meal was spent in conversation about cancer, dying, funerals...she just has to get these scary things out of her head so she can talk it out.  I know that having those thoughts outside of your head are way better than being alone with them inside of your head but it wasn't helping the boys any who are already freaked out about seeing this happen to their sister, knowing full well this could soon be their reality as well.  So, everyone was on edge and upset.  I keep it all inside and just focus on being one of the King's men who keeps everyone from falling to pieces.  It's hard.  It was frustrating.  I have never been so glad when everyone was finally sound asleep and unwound from the day.

We might actually be in Wonderland...in fact, I've been looking for Alice as we tumble down this rabbit hole we stumbled upon.

I can't even think straight anymore.  I'm tired.  People are asking about results and honestly, I hope we don't find out until next Wednesday when we meet with Dr. Shami.  I just want one more week to process what we have been through this week.  One more week to pretend this really can't be happening.  One more week to get my life in order, the laundry done, my friggin taxes done...find a better job I can do remotely...One more week to remain aloof and numb. One more week to laugh and cry simultaneously because that is more fun than running through a room scattered with Legos.

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Tuesday, March 15, 2016

Playing Possum

Ya know how they say, God doesn't give you more than you can handle?

Have you ever wondered what would happen if you just stopped handling things?

I did today.  I wondered what would happen if I threw myself down in the middle of the surgical suites and kicked and screamed and then just melted into a drooling mess of tears, crying UNCLE on the way down?  Then, just lay there with my face buried in some paper scrubs and then just peek out every now and again to see what God thought of that.

Do you think he would stand there and say, "Okay.  I guess that's more than you can handle.  FINE!  Enough is enough! Have it your way.  You win!  Are you happy now?"

And then...I would jump up and giggle and run down the hall clicking my heels.

Ya...probably not.  He probably doesn't fall for playing possum with how you handle things.

Actually...he would probably just stand there with his arms folded, tapping his foot and say, "Good grief, get up!  Stop playing around. You can handle this.  You ain't seen nothin yet!"
I seriously contemplated the first part though, the melting into a drooling mess of tears...

Today was almost too much!  But then, I had a good break down in the cafeteria at Huntsman, while trying to choose which banana to eat for breakfast.  I just mostly did it so Sam would put his arm  around me and give me a hug and tell me that he loved me and that we could do this. Playing possum.  I got this. Really!

No...I actually don't!

In case you are just joining this saga...today was surgery day.  It became crystal clear, very early on today why we had to wait a week for surgery; why we got bumped.  Clearly, we ended up with the most incredible surgeon.  She is a Complex Surgical Oncologist.  In fact, Shelbie had not one surgeon but three in the room with her.  She an entire team of specialists who all came in to examine her, talk to her, care for her.  It was the most incredible thing I have ever witnessed.  Truly, God was in these details.

Dr. S showed us the PET scan.  It was hard to finally see all the areas that are hot as can be.  Seeing is believing and things got real...real fast!  I had to leave the room for a minute to gather myself.  Up until a few minutes before surgery, they weren't sure where they were going to operate.  Three doctors couldn't feel any lymph nodes close to the surface.  Dr. Scaife laughed and said Shelbie was like the Easter Bunny, hiding those hot spots in the trickiest places.

They finally determined that the right side of her abdomen was going to be their first attempt. Surgery was nearly an hour and a half but she retrieved a golf ball size node that even stunned her.  They didn't look that big and ugly, even on the scan.  Prior to surgery, she told Shelbie that judging from the scan, she had about a 70% chance that this was cancer.  The other choice is a major infection/ inflammation.  I didn't ask her what she thought once she retrieved that mess.  I like to cling to denial...with the very tips of my fingernails.

So, we wait...3-5 more days for results.

I really wondered today if we could do this.  The hour before surgery, Shelbie struggled big time!  Poor thing!  It was heart wrenching.  When they unlocked the wheels to take her to the OR suite, I put my arm around her and kissed her on the forehead.  She buried her head in my arms and cried and cried, "I love you so much! Please, don't let me die today!"  With that, she was gone down the hall.


Well, this is hard.  Whatever comes of things, we will deal... Actually, after my little mishap trying to choose a banana, my attitude improved some.  Tonight, Shelbie is resting comfortably.  I am really surprised.  She has about a 3" incision and they had to dig deep so all things considered...it's going well.  Tomorrow, we will try to head home.  I have to stop every 45 min- an hour and make her walk.  They have been really concerned about the condition of her heart and lungs.  But...God is good.  He is watching over her and we will continue to do our best to handle things as they come.

As a side note...It's really hard to justify being upset about our lot in life.  Over the weekend, a small plane crashed, killing two couples from our area.  Both couples died and left behind their small children.  4 kids in one family and three in the other.  I can't even imagine the suffering.  What we are facing pales in comparison.  My heart and prayers go out to these families.
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Sunday, March 13, 2016

Holy Week

I have been pondering on the upcoming week of Easter.  With the trials we have been blessed to experience this year, I have come to know my Savior more than ever.  I have reflected daily, on his life and his mission.  Each day, regardless of my mood, I strive to picture him close to us.

It seems fitting that next week we commemorate his death, and over the next two weeks, we embark on the peak of this particular trial with Shelbie.  For weeks now, we have been anticipating surgery to move us closer to what we hope and pray will provide answers to her failing health.

Next Sunday is Palm Sunday. The day Jesus Christ entered the walls of Jerusalem.  He knew what the week would hold.  He knew of his divine mission.  He knew that the very people who would betray him, would be the ones he would carry their burden of sin for, as much as he would carry mine.  In the days leading up to Gethsemane, he would deliver some of his most moving and poignant lessons, even mighty miracles.  Simultaneously, in his preparation to make an atonement, he would suffer with lesser things; even small sifting holes that very well could have distracted even the Lamb of God.  He knew his mission, he pressed forward through the irritation of naysayers, false accusations; never swaying from his purpose and mission.

The entire week, he was surrounded by throngs of people.  People both for him and against him.  His mother was never far from his side.  I think of those who stood by the Savior, quietly administering to his needs.  I think of their suffering too as they watched the events of this week unfold.  I often wonder where Mary was, what Mary was doing when Jesus entered the gate of Gethsemane.

Gethsemane.  The place we will arrive at, some time on this mortal journey.  There is no way around the garden.  Christ entered those gates alone.  Gethsemane is a singular, solitary experience.  A moment when we must stand alone with only our devotion to God as our companion.

I don't assume that I know or even come close to understanding the depth and eternal significance of the final week of Christ's life.  I don't imagine that my discomforts of life, even my worst tribulation, hold a candle to what Christ suffered.  I know that it can't.  Yet, I feel a closeness to my Savior this week.  I feel I understand him better because of the Holy week He has placed ahead of us.

I will firmly place my hand in His and with my children in tow, we will walk a similar path this week, our own Holy week.   We will follow him as we have been commanded to do.

Make no mistake about it, I am very scared to embark on this week.  My insides have been shaking and quivering since Friday.  I am easily overcome with emotion both of fear and of faith.  It's a difficult thing to feel the power of both spirits working within me.

Without a doubt, as I strive to see this week with my spiritual eyes wide open, I will witness great miracles.  I will see angels and feel them.  I will count the blessings of the day and probably lose count of the blessings of the day. There will be profound lessons.  I'm sure, as is always the case, there will be exclamations of lesser things to irritate me.  At times, I know I will feel the stirrings of the Adversary, breaking down my resolve.

Tuesday will be significant for me.  Symbolically, I will be walking my dear Shelbie to the gates of  her own garden. I have stood by her side for 23 years.  I have taught her the best I could to know her Savior.  I have watched her sorrows and joys.  I will kiss her on the forehead and watch her walk away from me as she grapples with this very heavy, yet significant suffering with just the faith she has gathered along the way,  her devotion to her Father in Heaven and the mercy and love of her Savior and brother Jesus Christ.

I know that she can do this.  I know that she will come to her own terms of why she must suffer in this way.  I know that in this trial, she will find her purpose.

I don't know that I can do this.

I don't know what I am suppose to do while I wait for her.  The fear of losing my children has been a dread I have stowed away since the day they were born. Not only that, I dread that this surgery will still leave us without answers.  I dread that it will be a cancer that can not be treated.  I dread that it will not be cancer but something worse. I dread that she will die sooner than later.  I dread that she won't.  It's being caught in the paradox of what ifs and maybes that will surely erode my faith if I'm not careful.

At the same time I dread, I am deliberate in my faith and testimony.  We will do this.  We will put our trust in a God of lasting miracles and allow him to create in us, perfection.

We will become.

We will face our Father.

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Saturday, March 12, 2016

A visit from the IRS

Yes, you read that right.  THE IRS. The Internal Revenue Society...or whatever the 'S' stands for.

Remember back in 2014 and my $8000.00 tax bill?  Ahhh...well, I filed for a tax compromise because it was a little far fetched that someone with an income of $33,000.00 should have a tax bill of $8000.  I haven't heard a thing from them since I filed that a year ago.  I got a letter every now and again saying they were still deciding if they would accept my offer and I did not need to do anything. So, I haven't done anything about it.

Well, Thursday afternoon, they caught up to me.

Greta called.  Yep.  Greta from Memphis, Tennessee. Greta, with her big, deep, Southern voice that was very hard to understand...not a timid, shy, Scandinavian Greta as one might think just from the origins of the name, 'Greta'.

Now, granted, I have been a little disconnected, spacey, lost in life, lately but I do try to learn from my day to day experiences.  So, as my heart was skipping along with the very sound of the most terrifying acronym in the United States,  I remembered how great my insurance company woman was at diffusing my would be anger, so I zeroed in on some happy communication to catch her off guard.

It went like this...

"Oh, Hi!  I've been expecting your call!  What great things are happening for you today at the IRS?"
"For me?"
"Yes."
"Say what?"

She was tripping over her words.  I can only imagine that she doesn't deal with many happy people in a day.

It was actually a beneficial conversation and we went over several issues I am having with paying 900% self employment taxes when I make less than $40,000 a year and have extenuating circumstances with health issues.

I just want to shed a little reality on this situation...In 2014- My mortgage, Health insurance premiums and deductibles added up to $26,000.  Go figure...It's pretty hard to set aside 900% self employment tax when these kids of mine expect so much like Mac and Cheese  and Pancakes...every night!!  I finally had to tell them we had to cut back and have ramen with hot sauce a couple of nights a week to off set their expensive taste! Not to mention their complaints about wanting to be sedated for bone marrow biopsies which cost me so much more because insurance refused to pay for that part.  Some kids are so entitled.

Greta was great!  ha ha...I've got so many financial messes to clean up but she really was pleasant and helpful.

She ended the conversation by saying, "Now listen, I just really want to see you succeed and you can if you promise to communicate with me.  I'm not out to create trouble for you."

We have another phone date on the 24th of March which I am so looking forward to.  I think I'm going to send her some flowers and a box of chocolates.  I have a dream that this might actually be the start of a really nice friendship.  Greta and I.  Pen Pals.

I think I could get use to this new form of communication.  It's proven very effective.  I'm going to have to send my lady at the insurance company a little something for her wise HR skills.  You get to practice being cheerful, but at the same time, pepper in a little sarcasm, just enough to make your own little twisted need to be cranky feel fed and satisfied.

In all seriousness, I wasn't trying to get away with anything and I was glad to know where I stand as opposed to being thrown in prison for Tax fraud or evasion or whatever they call people who don't pay their taxes. Although, now that I think about it, it may be a great opportunity to get a little nap, a little quiet, solitary moment to myself instead of all this running myself ragged taking care of dying kids.  Maybe it's time for a little vacation...and, I really don't mind the color orange...and prison really does streamline your wardrobe and simplifies life.  Maybe I'll rethink my friendship with Greta...she just might be making my life harder than it needs to be.  Hummmm....

I'm sure you get the feeling I'm a little incompetent in life...I am.  Let's just be honest.  It's the little things that create insanity in me...and avoidance.  I like to wait until they become tragic, huge things!  
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Friday, March 11, 2016

Never have I ever


...had such a strange week.  Two phones call this week I never dreamed I would have ever had to have.  I had the shear pleasure of talking to the IRS yesterday, in a not so fun conversation and today, I had a conference call with the nurse of our new surgeon.  Never, have I ever thought I would be adding a Complex Surgical Oncologist to our team of doctors.

Now, I understand a little more why we had to wait a week.  The surgeon who we were going to be scheduled with is just a general surgeon.  They switched us to a Complex Surgeon, specializing in Oncology.  I guess I'm grateful for that but at the same time, it worries me.  Of course, my mind is having a hay-day trying to read into the change.  I feel like they know more than they are telling us.

The weight of our situation is starting to settle in and it is quickly becoming a nail biting experience.  Getting through the weekend is going to be tough.  The nurse said that Shelbie can't take anything other than Tylenol between now and Wednesday.  She had her transfusion today so that means it could be a rough weekend in and out of the ER for pain relief with something that won't thin her blood.   I hope I will be pleasantly surprised.  Shelbie has amazing friends right now and they have been so helpful to keep her occupied these past few weeks so she doesn't have a lot of alone time, especially on the weekends.  They have some things planned for tomorrow if Shelbie can manage. Keeping busy will help I think.

I find myself becoming quite anxious.  I am so scared that someone is going to get sick, get in an accident; something tragic will happen that will prevent the surgery from taking place.  I'm really nervous.

Well, other than that, infusion today went well.  They have a new 'toy' at the hospital we got to experiment with; a vein finder.  We are moving up in the world here...


This weekend is going to be all about trying to keep our wits about us.  Wish us luck! 
 

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Thursday, March 10, 2016

It's better to stumble.

On a forum today for Shwachman Diamond Syndrome, one young mother commented that I was her Yoda.  She is just one year into raising her little son with SDS.  He has already had so many difficult problems.

I am nobody's Yoda I can promise you that.  As I responded to her, I remembered our family mantra some time ago; "It's better to stumble down the right road, than to run down the wrong one."  This was my response to her.

"I feel like I spend more time dusting off my knees and wiping dirt from my face for all the stumbling I've done rather than being confident in any part of this, let alone 'doing it right', whatever that is."

This week, I have spent more time feeling beaten down and even trodden upon as I stumbled to find my footing.  It's hard being so human.

Monday was something else!  We managed to salvage the day but not without some scrapes and bruises to our earnest desire to be trusting, courageous and hopeful.

Tuesday, I was dusting off my knees and finding my shoe that flew off from the impact of Monday, and things were looking up ever so slightly until I got a call from my dear boy in Utah!  Spencer has been having an equally hard week.  It was 45 minutes of him telling me all the different ways he is a loser, a screw up, a poor excuse for an adult...let's see, what was the other condescending word he used?  A failure!  That was it.  He is just an all 'round failure to humanity.

A wise doctor is teaching me the importance of acknowledgement as opposed to approval.  So, I just let him unpack his very heavy luggage. It took nearly an hour and I acknowledge the difficult circumstances he finds himself in. "So?" he asked,

For another 45 minutes, we talked about the choices we make.  Most were made with the best of intentions in the wisest of ways or so we thought.  We have tried our best to live a good life with a disease that promises anything but that.  Now, we can both see there may have been better choices.

He had to be home schooled for the last half of his senior year in high school due to his very poor health.  During that time, I had two other kids pretty sick and Sam had missed the majority of his semester too.  School wasn't big on my list of priorities.  I had to decide where to put my energy and time.  I put it into teaching them service, hope, trusting in God and of course, trying to get better.   There were times, in my short sighted view of life through the lens of fatigue, I wasn't even sure they would live through the year.  We lived moment to moment and though we talked about the future like it would happen, we didn't really invest in the future.  We had no energy to put there; we were stumbling, as it was through each hour.

Now, he is lost in life.  He can't focus on anything but surviving the day because that is what he learned.  That is how life has always been.  That's good enough when you are a child and your every need is being met and it even feels like a healthy way of dealing with life...it's not good enough when you have to ADULT.   In some ways, I feel like this is my fault.

After a two hour conversation with him, I felt a little defeated so naturally, I took it out on Sam!

Sam is finding himself in his last semester of school trying to catch up from the 9 weeks of school he missed when he was in 9th grade.  I forgot about it until last year but then we were trying to figure out his heart and lung issues and catch up work had to take a back seat.  Now, he has an English class and a Seminary semester to make up in two short months and a mom who is spread thin.  Again, I have a really hard time worrying about additional school work at a time like this.

Sam is exhausted.  I didn't realize until last night that he sleeps a lot.  His eyes are always sunken and dark and he is completely run down.  In addition, he is worried about Shelbie's situation because naturally, he fears this will soon become his destiny too.  So...here we are stumbling just to get through a day.  I don't know how he will get all this school work done.

He sadly received a mini lecture on focusing, making plans, setting goals and priorities to get caught up, all in an effort to make myself feel better. That didn't end well...

"Can't you see I'm freaking out too?  I am overwhelmed and I can't do this anymore? I feel like an idiot when all my friends are home studying for the ACT and I didn't even realize I was suppose to sign up"

So...we stumble.  It's the side of effect of a life like this.  We will get there.  I know without a doubt, as long as we keep trying, things will work out.  And really...today is feeling much better.  Spencer had a few great opportunities yesterday to get outside of himself and serve,  and we did too.  That makes everything more manageable.

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Monday, March 7, 2016

Worst. Day. Ever.

Anytime Shelbie sees me getting frustrated, upset, or stressed, she says, "Mom, relax.  Stress causes cancer."  I don't think she's really trying to be funny.  I think she is genuinely worried about the levels of stress we can feel around here at times.

Today...the levels were toxic.

11:00 am, I made a few calls to the surgeon who I was told would be doing Shelbie's surgery just to see if they had a date yet.  Left a message.

11:10 am, got a call from a nurse saying she had a date for Shelbie's surgery- tomorrow!  Tomorrow, bright and early in Salt Lake.  I panicked.  I puked...and then I made a million phone calls to cancel my work schedule for the week.  The nurse was from a different surgeon's office than the one I had been calling.  I asked why they had changed our surgeon and she said this doctor was a better fit for the case.

12:15 pm, I pulled it together.  Focused.  Prioritized what remained of the day.  I had committed to make two birthday cakes today for two different people that had to be finished by 5pm. so there was no time to waste.

1:00pm, I got a phone call from the same nurse.  Apologetic this time.  She had to bump us.  A more serious case came up that would require the surgeon.  Our appointment is now next Tuesday.  ONE MORE WEEK OF WAITING...!  Is this real life?  How can this be happening to us?
I puked...again.  I made a million phone calls, rescheduling my work for Tuesday.  Trying to be happy that at least we would see the doctor on Wednesday to get results from the Cytogenetics and Flow Cytometry on her abnormal Lymphocytes.

1:45pm, Another phone call.  Dr. appointment Wednesday cancelled for two more weeks.  He wants to wait until biopsy results are back.  They will take a week...give or take.  It makes sense but honestly...I told the nurse that this was feeling a little overwhelming to be told our chance of having cancer is nearly 100% yet we wait...more than 8 weeks we've been waiting with this possibility sitting like an elephant on our poor, tired hearts.   She said, "I understand and I am so very sorry.  This must be an extremely complicated case. It's not usually like this. I had to schedule the surgery and I haven't scheduled such a complicated biopsy in a very long time.  It's almost unheard of. It's just going to take time to get the results."  So...two more weeks of this intense craziness.

Honestly.  I feel dead.  If stress causes cancer...I'm already dead inside.

We have been trying so hard.  Sooooooo hardddddd.....to be positive; hopeful.  I'm not going to lie, this is going to take some super kind of faith and patience to work through; to understand.  This may be the first time I look Heavenward and have to wonder what I am to learn from this.

I know it will become clear.  I know that.  I know this is all part of our learning and growing but still there must be another reason but it is beyond my realm of wonder.

I feel worse for Shelbie.  She has been amazing through this.  I hardly recognize her.  The struggle she is working through is phenomenal yet she keeps going!  I got home a little early from work this morning, before these phone calls started and she dropped to the floor in pain.  Still this nagging, sharp pain under her lungs...still the pain I assume is coming from her spleen but who knows...I'm not a doctor.  She laid on the kitchen floor for a couple of minutes.  I stood there and stared.  I don't know what to do anymore.  I'm completely helpless.

But a few minutes later, the pain passes and she is up, on her way to finish buying decorations for the surprise party she threw for her dad tonight.  I feel a deep reverence for her as I witness what she is living with but the sadness runs deep as well.  She is definitely earning her place in eternity...me?  Not so much.  Not after today. I was a big disappointment. I should have handled things better.

Oh well, tomorrow is another day to try again.  Hopefully, it won't involve puking because I would rather staple my lips shut than puke and besides, the kind of stress that makes you puke, also causes cancer and we wouldn't want that!    

Not to end on a sour note...Here are the cakes I made this afternoon.  The Life Alert Cake was for her dad.  No, I wasn't being mean...He turns 50 on Wednesday and since we were going to be in Salt Lake, she had planned a big "Older than dirt" surprise party tonight with all his nieces and nephews that are here going to school.   It was her cousin's birthday today so I made him a cake too.  She had asked me to do this for her last week and she picked out the designs.  It was actually the thing that got me through the rest of this day and her dad was so happy!  She was so happy!  That made it all worth it.

The Life Alert cake and the Stack of Pancakes cake.  I'm not that great at cake making...but I find it kind of fun. 




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Small Sifting Holes

On Sundays, I try to take some time to refuel my spirit.  Part of that exercise is to read something helpful or uplifting.  Lately, I've been reading a Neal Maxwell book, If Thou Endure It Well.  He is by far, one of my favorite writers.  He is poetic in the words he chooses and I love that.

He says that irritation often precedes instruction..."If we aren't careful, small things become the small sifting holes through which our resolve trickles away."

I love that reminder.  I have been dealing with a lot of small, sifting holes that do nothing but irritate and frustrate me.

For example- the darn, stinking car of mine!  It's just an irritation more than anything but the fact that it keeps having stupid issues puts me over the proverbial edge.  It's been in the shop now since Thursday and I think, this repair place actually knows what they are doing.  In fact, shout out to the Pro Shop...The front end girl Ashley has been amazing.  She has been so sweet and compassionate.  I called, she said they were backed up and they couldn't even get to it until sometime next week.  I hummed and hawed, trying to figure out what I would do without a car for our trip and then she said, "Did you need it sooner?"
"Well, I have business to do in Salt Lake next week but I can figure something else out."
"Is it a fun trip?"
"No, my daughter is sick and we are going to the hospital there."
"Okay, enough said!  I will make sure they look at this week!"

She called back a couple of hours later and said it would be done Friday.  She also said, "I don't even know you but is it okay if I pray for your daughter?"  I thought that was so sweet!  Turns out they found bigger problems after the smaller problems so I'm not sure when I will have the car back but those sifting holes were plugged with her sweet spirit.

Another sifting hole I deal with constantly is money or lack thereof.  Friday, instead of working on my projects for work,  I tackled the mountain of medical bills.  Remember the stack I had from last November?  I finally faced that.  Before you think I am completely irresponsible, I have been paying a small amount to each doctor, clinic, hospital, lab etc.  But, the totals weren't going down very fast and some were the final notice before collections.

In total, they amounted to more than $8000.  I couldn't even make sense of it and some of the clinics have a lousy billing system.  I called my insurance company to yell at them because it didn't make sense that I have a $3000 out of pocket family max but was stuck with $8000 as my responsibility.  Granted, a lot of these were for Utah providers who weren't in my Network from back in our Salmonella days.

As the phone rang for my insurance company, my blood pressure was rising and I was ready with fighting words...small sifting holes where mean words could safely escape.

Instead, the lady answered the phone and asked my name.  I told her and she said, "While I'm pulling up your account, tell one thing that made this week a great one!"  She was very cheerful and in that moment, I had no desire to argue with this woman. A little kindness goes a long way with me.  After some small talk, she asked how she could help me.  I explained that I'm a loser and couldn't make sense of all my bills.  She took so much time to go over each EOB and she found several errors on their side and the clinic side.  My growing debt went from $8000 to just over a $1500 for last year, in addition to what I have already paid out.  I was so relieved.  It's better than $8000.

That woman's cheerful manner was the plug to the my small sifting holes of resolve.  I learned a lot from her about how to deal with people...even tired worn out, grumpy people like me...at times.

Wow, Friday was a big day because I also got a call from the Temple that the girl who was sharing my shift needed to take two months off because she is getting married and needed every waking moment to work on wedding plans.  Now, I admit...I had a million, negative thoughts go through my head when I heard the reason.  The biggest one, Are you kidding me?  She can't take three hours a month to play the organ at the Temple?  Every second planning a wedding?  What a crummy excuse! She has no clue what real problems are.

Then, I heard my own list of reasons why covering her shift was going to be impossible.  I'm a single mom working two part time jobs that I am falling miserably behind on and my employers are going to fire me if I don't pull it together and I am running my own busy business and I have a sick kid and two more waiting in the wings with some dreadful thing I know is just around the corner and I never sleep and my house is a wreck and I don't have time for managing someone else's responsibility at the Temple. 

Followed by...
Are you kidding me?  YOU can't take 5 hours a month to play the organ at the Temple?  Every second taking care of sick kids, work and sleep?  What a crummy excuse! You have no clue what real problems you could have. 

Small sifting holes where resolve escapes.  I have my full shift back at the temple and I'm happy about that.  I am glad that I learned these valuable lessons this week.

Finally- a quote for this Monday.

"In the process of developing the precious quality of empathy, would we trade some earlier relief today for the enlarged empathy to be used in so many endless tomorrows?"  Neal Maxwell.

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