Tuesday, May 29, 2018

Post Trauma

The past few days have been the typical, post trauma kind of days.  I find I do well throughout the crisis but not so well in the days afterwards when things have settled down somewhat. 

Sam is doing okay, although extremely tired.  We headed in a couple of days ago for another CBC as instructed by the Attending doc, for follow up.  All of his counts have dropped significantly again.  Not quite as bad as they were when he was admitted but they are nowhere close to 5000 which was the big bump he achieved with Neupogen and IVIG.  His white count is back down to 2 and his absolute neutrophil count just below 1000. 

Some of his bone marrow reports trickled in throughout the weekend as well as most of the tests they ran while he was inpatient.  I can't even imagine what this hospital stay cost...there were some incredibly expensive blood tests.  A solid week later, still nothing has cultured. 

There have been a few shocking results.  His T-Cells are so, so low.  When I saw this, I immediately texted our Immunologist and asked him how freaked out I should be.  His response was..."Ya, it's very worrisome."  There is really nothing we can do until all the bone marrow results are back and insurance determines if they will approve IVIG treatment for Samuel. 

So far, the marrow results are showing a very stressed marrow.  He has 75% hematogones which are a specific type of B-cell.  Though some hematogones can be normal, under 10%, you should not have more than that.  It's hard to say what it means at this point.  It can mean anything from a malignant disease such as Leukemia or an immune issues such as thrombocytopenia purpura or immune neutropenia.  On one report back, the pathologist noted, "Suspicious of an evolving bone marrow failure." And, sadly, he has some bi-nucleated white cells which isn't good at all.

I don't know what all this means but I know it's not favorable and has to be sorted out by someone who knows what they are doing.  That appointment will be on Thursday when we see our oncologist.   I am already anxious about this.

In Spencer news...it never ends with this kid.  On Thursday, he was helping his friend insulate a house and he was trying to pull a nail or something out from the ceiling and the hammer he was using gave way and landed in his head.  He had a huge gash in his head and sent me pictures, wondering if he should go for stitches.  By the time he had gotten back to his apartment and took a shower, and sent me the picture, it had stopped bleeding so I told him not to bother.  Turns out, it was a hard enough hit, he had a concussion and spent the weekend dizzy, confused and disoriented. 

Tonight...another call from Spence and he fell while skateboarding and he thinks he broke his elbow.  His friend sent me pictures and it certainly does look broken.  None of the urgent care clinics are open today and the only hospital that will accept our insurance is an hour away so...he will wait until tomorrow to get x-rays.  His new car is a stick shift so had to have a friend drive him home since he can't straighten his arm. 

I have no words... 

Wednesday, May 23, 2018

The Verdict

I received an unexpected call from our Immunologist late this afternoon.  He is such a compassionate man and has had so much concern for Samuel and this situation.  He has been able to review some additional test results and he has diagnosed Sam with Autoimmune Disease.  Specifically Autoimmune Neutropenia.

This is in line with CVID- Common Variable Immune Deficiency, the same disease that Shelbie has.  Sam is presenting in much the same way.  Shelbie's journey in this disease started with Immune Thrombocytopenia Purpura and she couldn't keep her platelets above 1.  For Sam, it appears that the antibodies are attacking all of his cell lines but especially the neutrophils.  His counts were showing no production of new white cells and one of the markers for platelet destruction continues to be high.  They know his marrow is capable of producing the cells since he got an amazing response with Neupogen which is good news.

He is also depleted in the immunoglobulins IgG and IgM.  which we have known for the past year but we wanted to try to get by with antibiotics before resorting to immunoglobulin replacement therapy.

CVID is this horrible umbrella of symptoms that includes autoimmune diseases, lack of immune proteins and granuloma growth...among other things.

I don't want it to be this for Sam!  It's such an incredibly life changing disease on top of Dyskeratosis Congenita, not to mention, horribly expensive- thousands and thousands of dollars a month for treatment- over $10,000 a month.

The treatment is IVIG (plasma) given intravenously at the hospital or Sub-cutaneous which I can do at home.   Our doctor is starting the paper work for insurance approval tomorrow.  The doctor wants to do a month or two at the hospital and then transition him to Sub cutaneous after that.  The plasma transfusions will quiet the immune system and will help to a certain degree to bounce his counts back up because the cells won't be getting destroyed faster than he can produce them, and it also protects him against infections so it's the gold standard of treatment.

I have known that we wouldn't be able to avoid this but it never occurred to me that part of the battle would an autoimmune disease destroying his blood cells.  I don't know why it didn't...That was such a horrible time with Shelbie, I've blocked it out of my mind. 

I asked him why he doesn't think it's a virus or bacteria that just acutely created a suppression of his marrow.  They tested him for 100 different viruses- all negative.  They cultured his blood twice and nothing has come of that. The fungal panel was negative. He's been on strong antibiotics for 6 days and no change in his condition. He still fevers at the same time every day.  That fact, is what they call a neutropenia fever.  If he had a virus or bacteria, he would get a fever and it would generally stay elevated.  With a neutropenia fever due to lack of neutrophils, the fever comes at the same time every day and comes and goes without any fever reducers.  However- today is the first day since last Tuesday, he's been almost normal- 99.3 so it's just ever so slightly elevated.  This is due to the IVIG more than likely.   By now, the Neupogen he received late Saturday, is on it's way out of his system.

I guess there is always a possibility that they will find abnormal cells in his marrow that might explain this situation, but that has never really felt right to me, but never say never.  We will get those results next week.

I had to break the news to Sam and he is obviously upset about it but Spencer was more upset.  The difficulty in having three kids with the same disease means they see what's coming by watching and suffering with each other.  That's rough.  Sam is more upset they won't let him stop the worst antibiotic known to man- Levaquin!  It's a horrible drug and makes him feel worse than the actual problem.  I told our doctor I had told Sam not to take it anymore because of the joint pain, burned looking skin, tremor and GI distress but he convinced me that would be a bad decision.  So, two more days of that for now and then hopefully switch to a different antibiotic until we can get insurance approval and plasma transfusions started. 

This all happened so fast...I can't believe it. 

Monday, May 21, 2018

No Change

Well, there is absolutely no change in Samuel's condition.  He can barely walk around the house without being completely exhausted.  The hives resolved but what is left is skin that looks sunburned and it's really itchy, but not raised like hives.  Benedryl does nothing for it, at least alone, so I added Zyrtec and Pepsid to the mix since they all work on different histamines.   That mix seemed to help. This morning, he woke up with a significant tremor in his hands. He is still running a low grade fever. Sam is a completely different kid from just 8 days ago.

I spent the better part of the afternoon coordinating appointments for Sam and Shelbie.  They will both see the Oncologist again next Thursday and Shelbie will have her biopsy on Friday as well as the last of the carcinoid syndrome testing. 

Over the few days we were inpatient, I kept reviewing the past 6 weeks with the doctors.  The acute kidney disease, high blood pressure, then high bilirubin.  I have a hard time thinking he has three or more different things going on with him.  It's all happened so close to each other, I feel like something is attacking his organs and marrow...Now, if the tremor isn't medication related then it's a new neurological problem.   One of the doctors agreed with me, he called it the Occam's Razor.  It's a theory in medicine that there is one cause for multiple symptoms.  I wish we could find that one cause.   For 6 weeks, Sam has been complaining about not being 'well'.  He keeps saying he isn't sure what is wrong but that he feels his body just needs a major tuneup.   It think this feeling is part of the whole issue going on. 

Anyways...that's the gist of life at home.   I solved one mystery while we were in the hospital...While we were waiting in the ER, I was able to see through the glass windows and into the receptionists desk area.  They had a notice up about the continuing outbreak of Hepatitis in the valley.  It's been increasing in severity since January.  I guess we know now how Spencer picked it up.  It's irritating the Hepatologist didn't mention this.  It is so difficult having three children who are immune compromised.  As much as I would like to keep them in a bubble and unexposed to the outside world, that isn't reasonable but the flipside is, they pick up everything out there.  This is no joke!

Sunday, May 20, 2018

The Black Sheep

We made it home tonight.  We actually got word around noon that Sam would be released but it took much longer before we actually walked out of the hospital.  We weren't even 15 minutes down the road and Sam broke out into massive hives.  They started on his stomach and then starting winding their way up and around his body.  I wasn't about to deal with throat issues from hives so I quickly found a pharmacy to drowned him in Benedryl.  It kept them from spreading but he is still having issues tonight. 

And...guess who is running a fever tonight...Ya, Sam.  I know he's not out of the woods but still.

The reason they let us leave, is because the Neupogen raised his neutrophils to 5000!  When the doctor told me that, I was shocked.  I actually said, "Is that even normal?  Isn't that way too high?"

Everyone in the room started laughing..."No, it's not too high, that is normal."
"Normal?  Never in my life, if I combined the neutrophil count of all three of my kids, on a good day, it still wouldn't equal 5000."  We are so use to living well below 'normal' and accepted that as okay.   Even this morning, they were running new tests, still trying to find the infection. 

The Attending doctor actually started to grow on me.  I quite like her but she still isn't as good as our regular Oncologist.  They still can't exactly determine if Sam's fever is simply a Neutropenic fever because his counts were so low, or if there really was 'something' attacking and suppressing his marrow.  She suggested that if he continued to have a fever, then it likely is caused from a bacteria, virus, etc...cancer, rather than neutropenia because he now has a normal number of Neutrophils.

The whole thing gets confusing and complicated.   I have so much to learn.  Anyways, we have some pretty strict rules for the next few weeks. No exercise- the antibiotic they sent him home on has a high risk of tendon ruptures so basically, nothing more than walking.  No sun exposure.  No exposure to sick people or people who have been around sick people.  Shoes off at the door.  Blood work every three days.  Follow up with our Immunologist and Oncologist next week.  By then, final cultures will be done, bone marrow results should be in.  The Attending said she looked at the slides and there wasn't anything terribly scary at first glance so that is hopeful. 

On top of all this...I need to get back to Shelbie's 24 hour urine test, get her bone marrow scheduled and follow up with Oncology about starting chemo for her granulomas.

The strange thing about the hospital is that you sleep when you can.  That doesn't always take place at night.  In fact, many nights, I sit there staring out into the dark night.  Last night, I wandered up to the non-denominational chapel and they had several books and pamphlets from all religions.  There was one called "The healing power of the 23rd Psalm."  I picked it up and read it.  It compared us in our trials, to the Shepherd's sheep. Maybe one of these posts, I will summarize it but there was one part that struck home.

"He Leadeth Me in the Paths of Righteousness..."  Sheep have very poor vision and no sense of direction. They have no internal compass.  They can see no further than 10 yards in front of them.  The fields of Palestine have many narrow, rocky paths and some lead to narrow precipice which could make the sheep fall to their death.  The sheep rely on the Shepherd to lead them to green pastures and still waters.

After reading this, I decided that my problem is that I am the black sheep.  I can see so far into tomorrow that I forget to follow the Shepherd today, thinking I know where I'm going and how to get there.  In complete shock and surprise, I find myself lost and not where I wanted to be. I'm nowhere close to green pastures and still waters.  I want my green pastures and still waters, I don't want to get there over the narrow rocky precipice. 

Sheep start out the day with a determined place in the fold, but at various times, each sheep will approach the Shepherd.  The Shepherd will scratch their ear, whisper gentle, reassuring words and the sheep returns to their place.  In a way, the Shepherd is reminding them to stop for a moment.  Stop struggling, stop wandering, stop hurrying, stop worrying.  A reminder that the Shepherd is with them. 

Lately, I have been so worked up in the struggle and my vision so limited, I've lost my way through these trials.   I haven't had time to stop and think about anything but the struggle and worry about how to navigate whatever is coming.  Maybe I don't quite want what the Shepherd wants.  I need to be more like the obedient sheep rather than the black sheep, so quick to stray from the plan, thinking I can see better than the Shepherd.  Actually, maybe it's not that I think I can see more clearly than the Shepherd, maybe I'm scared to go where I'm being led. I don't want to walk through the Valley of the Shadow of Death...Shepherd or no Shepherd, I don't want to go there.  I don't want to be on the valley floor, in the shadows, yet this is where we are.

 Henry Ward Beecher said, "The 23rd Psalm is the Nightingale of the Psalms.  The Nightingale sings its sweetest when the night is darkest."

We are home now, and maybe home is the sweet sound of the Nightingale on this dark night.  There was nothing sweeter than to have Sam home and walk in to the open arms of Shelbie and Spencer.

Saturday, May 19, 2018

Huntsman Day 3

There has not been a lot of change to report which is discouraging.  Three days on antibiotics and still spiking fevers. Tonight, he is still bouncing up to 103 degrees!  This morning, his counts took another dive, except his platelets, they are back up to 112,000.

Sam was watching a large group of guys hiking the hills behind us.  The tubes and pumps are growing ever larger in an attempt to make him better.
 They have successfully ruled out viruses, influenza of any kind, and pneumonia.  Blood cultures are still negative as well as fungi cultures.  The attending physician and her team of hematologists are perplexed.  With all the typical causes of infection not found, they start looking at the bigger, more serious things like cancer.  Specifically, Leukemia and Lymphoma.

This stupid 'L' word is following us around like a stalker.

It's fair to say I am completely out of my element.  I know nothing about serious Neutropenia.   None of my kids have ever before had such low counts.  Tonight Sam spiked a fever of 103 and they wouldn't give him Tylenol for 60 minutes so they could determine if it was a neutropenic fever.  This is what I really don't understand but she said if it was still 103 after an hour without meds, then they would draw another set of blood cultures.  If it was dropping at all, they would assume its a neutropenic fever.  She suspected it was a neutropenic fever because looking back over the past 4 days, there is a definite pattern to the spikes.   Sure enough, at 60 minutes, it was coming down.  His blood pressure was also coming down and his heart rate.

I don't know where we go from here...The bone marrow biopsy won't be back for another week or so.  Unless they know what they are treating, it's very hard for them to just let us leave, especially if he is still fevering.  I'm kind of pushing to leave as long as our local doctors understand the protocol for taking care of him back home.  I'm a little worried that this will change the whole game plan from immunology and he will need to start weekly plasma transfusions.

Shelbie and Spencer Facetimed Sam this afternoon and tonight, they had a box of chocolate chip cookies delivered to his room.  It was so helpful, it came at the perfect time when Sam was really struggling. 

To add to our worry today, we had to make some serious decisions.  The Attending wanted to start  Neupogen and IVIG to replace Sam's plasma.  The Neupogen stimulates the bone marrow to produce more cells.  This is risky not knowing exactly what we are dealing with because not only does it increase the good cells, it increases the bad cells too.  If we do nothing, who knows how much worse things will get because his marrow is so suppressed.   We chose to do the new medications. 

As is customary, Sam had a bad reaction to the IVIG just like Shelbie use to get, so they had to slow the rate way down but he was still so miserable.  It's hard to see him suffer through these high fevers without any relief and then all at once, he's drenched in sweat and we have to change his sheets, his clothes...it's miserable to watch.

They want Sam walking as much as possible but he's not allowed outside because of all the pollen, dust, and construction particles...and he's not allowed to be in the sun.  So, we wander the hospital.

This picture is worth a thousand words.  Sam's getting pretty worried and discouraged. 

I'm understanding more of God's timing for this situation.  I know that Sam is where he needs to be.  It's just so hard that we haven't had a decent break in our trials in over a year.  Looking ahead, I still haven't processed the idea that Shelbie may be starting chemotherapy again just to try to slow down her granuloma disease...and she still needs her bone marrow biopsy that was suppose to happen Friday...but again, this issue with Sam took precedence. The problems are stacking up for us and that is overwhelming.  For now...we just want to go home.

Friday, May 18, 2018

Huntsman Day 2

I'm still having a really hard time figuring out how we got from a regular clinic check up to this...

Day 2 inpatient and there really isn't much improvement to speak of. Sam's white count is just at 1 and his neutrophils crept up to 500 but his fever also stayed at 103 all day.  His platelets dropped to 90 but have made a slight bounce tonight. Tonight he has a pounding headache and is really uncomfortable.

In the ER at the University of Utah
 We've had doctors coming and going steadily all day.  I bet we've seen at least 9 different doctors and we haven't known a single one and each one zeros in on one issue and beats it to death.  One of the Residents came in and she was dressed horribly.  I don't know why that makes a difference to me but it does.  She looked like she just finished cleaning her basement, just so unprofessional and couldn't keep her attention on Sam but was intrigued with some commercial on TV.  In fact, she kept saying, "Sorry, that commercial is interesting."  Her thing was that Sam had ear wax in his ear, so she ordered ear drops to clean out the wax.  The nurse keeps asking if she can give Sam an ear wax treatment and he keeps saying no.  Finally, tonight, the evening nurse came in and Sam said, "Why are we caring about ear wax?  I don't want to do it.  My ears don't hurt."  She kind of laughed and thought it was silly as well.

In our room at Huntsman's Cancer Institute

A beautiful view of the terrace and Wasatch Mountains from Sam's room
Another Fellow, ordered blood thinner shots given in his stomach twice a day.  His platelets are low and a blood thinner on top of that made his nose gush blood all morning long.  It's crazy.  Tonight, Sam also refused the shot, explaining that his nose keeps bleeding.  The night nurse is great and she allowed him to skip it.

I know, I'm complaining but I just want to see our own doctors who know Sam and know his history.  The one thing I will never get use to with big hospitals like this is that you see everyone but your own docs.

He had his bone marrow biopsy mid morning.  It actually went well or better than either of us were expecting.  I am usually a few feet from the kids when it happens but I was bedside this time and that was hard.  The poor Hematologist who did it was struggling.  He had to keep stopping and rubbing his hands and fingers because he could not get the large needle through Sam's bone.  It made me cringe but Sam handled it very well.  The doctor kept saying,  "You will feel pressure but I don't want you to feel pain."  He gave Sam a little morphine and Ativan and it was much more effective than the Fentanyl Lollipop like Spencer had or even a Fentanyl drip Sam had with his last marrow biopsy.

Crazy how just 6 weeks ago, our doctor was so happy that Sam was doing so well, he said we could wait til Fall for another biopsy...I must have forgotten to knock on wood.  
I had to laugh, the doctor doing the biopsy said, "Dr. S warned me about Sam.  He said I shouldn't be surprised when what I read on paper doesn't match what I see.  He looks like a very sick boy on paper but like an Olympian in person...Dr. S was so right."  I'm glad that Dr. S has picked up on the fact that even when my kids are at their sickest, they still act relatively fine and that throws everyone off.

Some of the docs have said there's no reason to keep him here and one suggested I could take him home today.  Another said he would be here until Monday and I've also heard tomorrow...so who knows.

The viral panel is back and there is no evidence of a virus.  Bacterial cultures are still pending as well as the fungal panel.  No real symptoms other than a high fever and a pounding headache.

He has been in isolation all day.  Finally, tonight, they let him mask up and take a walk around the 4th floor.  I kind of broke the rules and took him up to the top floor and let him lay on a bench in the chapel while I played the piano for him.
Watching the sunset over the Salt Lake Valley from the top floor chapel. 

This is the terrace right outside Sam's window.  When he was able to drift off to sleep from the effects of morphine and ativan, I slipped out and fell asleep in the sun, right outside his window. 

I was checking in on Shelbie after Sam's bone marrow biopsy this morning and she reminded me that it was pretty amazing that our Immunologist suggested labs on Sam.  He wasn't going to get any blood work at first but then decided he had better.  It's also pretty amazing that he was still in the hospital waiting around for the results.  He actually works at the VA hospital and he is independent which means he has no staff to help him co ordinate things...so it's just him.  He sees us in clinic at the U in Infectious Disease Clinic.   If everything hadn't of fell into place the way it did, there's no telling what would have happened with Sam.  I've never had a child this neutropenic before.  I know both our Immunologist and our Oncologist were a little spooked at how fast Sam crashed.

I'm a little worried that none of the tests are coming back with the usual suspects of infection.  It leaves so many more questions and complications since the infection isn't found yet.  I am hoping that tomorrow, he turns a corner and can break the fever.  After 24 hours on IV Antibiotics, we usually see great improvements quickly.

It's been a struggle to keep a good perspective this week.  I know it's just because I am so tired and frustrated.  I lost two clients today because I've had to cancel so often over the past two weeks.  Even though I'm telling them the truth about having two kids in the hospital, it sounds more like excuses than truth.  I'm very worried that more people are going to bail on me and I'll be left without a business to support us.   It's hard to see how we are going to keep managing this life of ours.   I am finding that I can't do both...care for my kids and make a living.

My Wasband was back home today, so the kids packed up some clothes for Sam and I and my computer and files so I can start back to work tomorrow and at least work on some drawings while I sit here.  I met him out at the highway late tonight and got our things and hurried back up here.

So...who knows what is coming tomorrow...

Thursday, May 17, 2018


Last night, Sam spiked a fever and developed a headache. I was just headed to bed since we had to be up at 4 am to drive to Salt Lake. I gave him meds and went to bed. He seemed better this morning so off we went to our appointment.

Shelbie: he is pretty concerned about the new tumors and the old tumors getting bigger. He agrees that the risk to operate is not worth it. He would like to start two chemotherapy drugs in an attempt to slow the growth of the granulomas. It would be a short trial, maybe 3 months.  He wants to make sure our oncologist is on board. He also told Shelbie that she will never be able to stop the plasma transfusions. That didn’t go over very well with Shelbie. Since she had meningitis, he wants to give her body a 2 week break from the plasma since it can irritate the brain lining.  We will wait for him and our oncologist to create a care plan. 

Sam: the doctor is also concerned with the number of times Sam is sick but he doesn’t want to start transfusions too soon but his IgG levels have been steadily declining and he too has granulomas starting in his lungs.  However, he is starting the insurance process since it can take a few months for it to be approved. In the meantime, he will be on daily antibiotics. 

We wrapped up our visit but he wanted Sam to get labs drawn so we did that and left to meet Spencer for an early lunch and head home.  After we ate, shelbie wanted us to see this Museum she likes downtown.   We decided an hour to do that would be a much needed break from the latest stress. It wasn’t long before Sam got a call. It was our Immunologist. 

He informed Sam that his white count and neutrophils were critically low. His white count is barely at 1 and his neutrophils below 300.  He asked us to start heading back to the hospital while he called our oncologist. About 15 minutes later, our oncology nurse called and because of other labs, they wanted to put him in the hospital. All the beds were full at Huntsman and they were extremely worried Sam would go septic while waiting for a bed. So, they had us go straight to the U of U ER. 

The ER had a three hour waiting time!!! It was like a land mine of bacteria. I made Sam wait outside the entire time. The waiting room was packed with really sick people. I waited in the waiting room so we wouldn’t lose our place because they said they wouldn’t come outside to get us. Sure enough, 2.5 hours of standing, they got him back and moved really fast to get antibiotics going through an IV. We were there 4 hours and they said our team decided to take a bed at the U. I was fine with that, our team would still follow him there. Literally 20 minutes after they told us that, they came in and transported him up the hill to Huntsman. I didn’t ask questions, just rolled with it. 

So, thankfully we are at Huntsman. Sam’s fever is over 101, nothing is bringing it down. They will do a bone marrow biopsy early in the morning and our team should be in to see us.  Until then, I’m not sure what the plan is or how long we will be here. 

Sam is in full isolation. No visitors allowed.  Spencer took Shelbie home and they will pack some things for Sam and I and come back tomorrow.  All I have is my phone and the clothes on my back. I hope and pray they can find the cause of these serious problems. 

I’ll update more as I get details,

Wednesday, May 16, 2018

Truth Hurts

It's been such an emotional several days, we are all sort of feeling an adrenaline hangover and having a hard time finding our footing again.

Saturday night at the hospital was probably the hardest night.  We had a hard talk with our Doctor.  I really feel lost as to how to manage things.  I feel like all I do is take people for doctor appointments and doctors feel lost and overwhelmed, I feel like I'm losing my mind and the kids leave without a plan or hope to ever feel better.  Sometimes, I think people just look at me like I'm crazy or making all this up.  I spend the better part of each day second guessing myself and questioning my ability to take care of my kids anymore.

Our heart to heart with the doctor was a good chance to understand his perspective and to get some good advice.  I trust our docs and their feedback was valuable but I'm not going to lie, it was hard to hear but it needed to be said and heard.

For him and the Hospitalist to see the MRI for themselves, and the number of tumors was very validating.  They were overwhelmed to see all that.  I am unsure how to advocate for Shelbie moving forward.  I'm not sure if I should push for a biopsy so we know for sure if we are dealing with lymphoma, or if we should just not worry about things and retest is 4-6 months.  For the first time, and without mincing words, Shelbie heard from the doctor that her situation is very serious.  It isn't  a matter of 'if' she gets cancer, but when.  He made it clear that the clinical picture is not promising and he felt that I needed to be a little more aggressive in getting one of the tumors biopsied.  Our doctor admitted that he is typically very conservative and takes the wait and see road but he said if Shelbie were his daughter, he would be not be waiting around.

I brought up the concern of how difficult and invasive surgery could be and all the possible complications.  He countered that, with the point of view that what if they could catch the cancer early and treat it or put it in remission...why wouldn't surgery be worth that?  The longer we go without checking, the bigger the risk for a staged cancer that can not be treated effectively.

It's a tough call.  I was glad for the time he spent with us.  It made me feel validated and witnessed which is not something we get very often.  It was hard to hear though.  I spend so much time running from the truth of our situation, refusing to let the reality own any part of my mind.   Shelbie has struggled to hear that as well.  We haven't really talked about that much over the past couple of days.  I do what I do best...ignore it.

I did get a call from Immunology and they have made time to squeeze Shelbie and Sam in tomorrow morning.  I was surprised about that and not prepared for a Salt Lake trip this week.  In a way, I felt angry that they had an opening so fast.  I just don't think I have it in me for this but, I know it's for the best.  Sam is going because I think it's time to start plasma infusion therapy for him.  Our Immunologist was hoping to get a couple of years out before starting it but I don't think that is the right thing to do.  I think the sooner we can get on this with Sam, the better the odds of slowing down the disease process so he doesn't deteriorate as quickly as Shelbie has.  I don't know...we'll see.  I am happy that we will have another set of eyes on the granulomas and get his thoughts, since he is the one who follows the CVID.

The next few months are not going to be easy...shocker.

Tuesday, May 15, 2018

Mother's Day and Birthdays

Shelbie was able to come home from the hospital on Sunday afternoon.  It took me all afternoon to get her comfortable, pick up her prescriptions and get a week's worth of laundry done.

When we got home, Sam had bought us both a bouquet of flowers for Mother's Day and he helped me get things back in order.  He and I ate dinner in the backyard with the late afternoon sun.  I was able to talk to Spencer and he sent me a really nice text and a video.   It was just good to be home and enjoy a little quiet and order.

This is the video that Spencer sent me.  I stood in the laundry room, sobbing!

Monday, was Samuel's birthday!! 20 years old for this baby of mine.  It seems unreal that he could be so old already.  Since I had planned to do his birthday shopping last week, I took the day off from work and scrambled around trying to make sure he would have a day that made him feel special and loved.  I had to make some revisions because of time constraints so no cool cake this year.  I ordered a couple dozen of his favorite, blueberry cake donuts and made a donut bouquet for him in a vase of M&M's.

We tried to eat at a restaurant of his choosing but I had to take Shelbie on some serious medications and in the middle of dinner, Sam had to leave to get sick and his girlfriend came along so we were all sitting there trying to act like everything was fine!  Basically, she was the only one who ate, the rest of us pushed food around.   After dinner, we met all the cousins for a late showing of Avengers.  It's been a tradition that Marvel comes out with a movie the week of Sam's birthday so he goes to that with his dad.  Since his dad isn't here, I took over the tradition.   Sam and his girlfriend have spent the past three weeks watching every Marvel/Avengers movie made.  I have never in my life watched an Avengers or Marvel movie so I was pretty lost during the movie but the kids loved it!

For birthdays, I have been trying to give the kids 'experiences' rather than things.  I got Sam a punch card to the Idaho Art Lab so he can use the pottery wheel and kilns.  He loves throwing pottery so now he will be able to practice new techniques while he's off from school.  He was pretty excited about that.  If you are local and have a child who is into the arts, it's such a fun place to hang out.  They have so many different arts to learn, from lapidary to screen printing, woodworking etc.  You can take classes or just show up and use all of their equipment and supplies for a very small fee.

All in all, Sam felt loved and one year older.   I felt happy to be home instead of that isolation room at the hospital.

Saturday, May 12, 2018

Faith and Will

I have more time than I need, these days, to be frustrated and irritated and just plain weary and tired. 

When I can't think straight enough to work anymore, while sitting in this stale hospital room, I think about miracles and faith...and God's will.

From healing the blind, to raising the dead, Christ healed them and with each miraculous healing, he made a point to remind them that it was their faith that made them whole again.  Christ could calm a storm, walk on water, transform water into wine, feed thousands with a few measly loaves of bread and fish and wither a tree in the blink of an eye.  Over and over, he took his disciples, more than anyone else, on an adventure of faith. 

If you read about the miracles in order of how he performed them, you can see a pattern that applies to life with us today.  From the moment of birth, we embark on a journey of transformation, like the water to wine miracle, the first miracle Christ performed.  Though the process is much more tedious in us, it's miraculous all the same, if we endure the discomfort of it all. Throughout life, we feel the swells of our personal storms, scarcity of resources- food, money.  We experience disease and the slow death of our spirit and faith, at times.  We too know what it's like to be blind, unable to see what is next. 

What I find interesting, is never once, that I can find recorded, did Christ sit the recipient of the miracle down prior and say, "Your faith can make you whole but only if it's God's will."  I may be wrong, maybe he did do this, but it certainly isn't the first implied message from the scriptures...Faith comes first in all of the miracles Christ performed.

A few times, we can read when Christ begged and pleaded with God on behalf of the people in a request for special blessings, but even still, the lesson of God's Will was between him and his Father and included no one else, least of all the miracle receivers.  It's almost as if the lack of this lesson in tandem with the miracles, for the disciples, was by divine design.  It wasn't until the final day of Christ's life, that the lesson of God's will was taught, and taught in the most, striking, brutal, heart wrenching way in the beautiful Garden of Gethsemane. There, in that peaceful, solitary garden, Christ questioned the plan but of course, with all the perfect grace that only Christ has.

I wonder if Mary, ever privately questioned why Christ could heal and transform everyone else with mighty miracles, yet none were reserved for her own Son.  Clearly, she was above us all to be trusted, chosen, set apart and divine, in order to be the mother of Christ, but I know the plan too...the same plan Mary knew.

I have been chosen and set apart to take care of my children as well.   Though I may be lacking in divinity, I know the plan all the same.  Despite this knowledge and all my efforts of faith...the Will of God requires a different kind of understanding.  I'm just now feeling that. In my religious beliefs, we throw the words- 'if it be Thy will', around like all you need is to the utter the words and by some miracle...you surrender and, like the ease and brevity, which the people saw water become wine...we are transformed and on board with some higher plan, that at a distant day, will make more sense than our own plan and our own understanding for our life.


It is not that easy.  It is not easy at all.  I think it may even be the loneliest, most difficult principle to learn and accept.  And as is customary for Christ to teach with established patterns from days gone by, this may be the last and great battle in our test of mortality just as it was Christ's last and final battle.  Faith is nothing compared to the surrender that can be required of us.  I'm guessing when I figure this out, I'm outta here!

It's not that I don't believe that God's will for me is better than any plan I could come up with, the problem is, it can make no earthly sense whatsoever and that is exhausting and perplexing and that is what is hard- to just sit in the middle of this higher plan and 'be okay' with it all. It's a completely foreign dialect of faith...There's a learning curve and intensity to Will that grows with faith experiences.

At any rate...we are struggling.  Shelbie has given up.  I think the thing keeping her in the hospital as much as anything physical is the fact she has lost her will to keep fighting.  I have seen her discouraged but I think that could officially be classified as despair now. 

The pain is now the hardest part and until that is manageable, we can't go home.  I will say over and over that our family docs are the best.  We see the two who are partners and they are equally good.  They are so patient and understanding that Shelbie has such a complex situation. 

Tonight, we saw Dr. G.  He took the time to go over all of the tests that have been done in Utah over the past year and compared the scans done this week, with what was done even 6 weeks ago.  Both of our doctors and the hospitalist seem to agree that the problem now, could be that because of all the inflammation and swelling in the meninges and the infection, the already large lymph nodes along her spine, aorta, lungs and everywhere else are also reacting and putting even more pressure on her spinal cord.  So, while the infection is managed, now we have this secondary problem. 

Her IV infiltrated this afternoon so they pulled it and we are going to go without for a bit and see what happens when we just do all the meds orally.  He also added some new medications in hopes of cutting down the swelling even more and lower down the spine.  The MRI actually shows her neck and thoracic spine to be compressing.  I went back through other scans she had in Utah and her spine was perfectly fine...so it's complicated and confusing.

So, maybe tomorrow we can go home if the new medications work better...of course, it's it's God's will.

The days are long

I don't know if we are going to get out of here today or not.  I've had high hopes, our doctor has had high hopes.  Until Shelbie can be completely independent of the IV meds, she can't go home.  She had a really good night, like a really good night! We actually got a 4 hour stretch of sleep but she still can't manage the pain with oral meds alone.

She's been confined to the room because of infection restrictions and these walls are closing in on us.  I really think she could feel better if I could get her up and walking and seeing the blossoming trees.  We have a big beautiful window but it looks out on the roof top of the hospital and the combination of rocks and HVAC equipment is lacking in the Zen department.  The longer we have to stay here, the more I start feeling we will never get back to normal...but then I roll my eyes to myself and remember that normal was pretty much gone a few months ago. 

I know that until I can learn to live in the chaos, I will never feel settled.   Funny, how the challenge is to feel settled in chaos...who does that?  How does one do that? 

Speaking of chaos, look at what happened to our Doctor's office!  A lady driving 50 mph down main street couldn't manage the turn onto the on-ramp, lost control, jumped a fence and drove through the side of the clinic wall and into an exam room.  The impact was so forceful, it moved the main wall of the hallway, 18".  Our doctor had all this to deal with but still came up to the hospital afterwards to check on Shelbie.   There was a patient and the PA in that room when the car came through the wall. Crazy stuff... 

 I guess there isn't much more to report...feeling conflicted and tired and anxious.

Thursday, May 10, 2018

More of the same

Today was more of the same kind of stuff.   They decided to do some more MRI's because the pain is radiating down her spine even more.  Of course the hospitalist was pretty concerned with what he saw because he saw, for the first time, all the tumors she has.  There are many close to her spine so he thinks these already large lymph nodes in addition to the rest of this mess, is certainly not helping the situation.  His comment to me was..."You have a pretty strong case for Lymphoma.  These granulomas and lymph nodes are not tiny things."

I just don't know.  I feel like we are stuck. Every doctor we have has a different opinion of how to move ahead and right at the moment...I have no direction and no clue how to move forward.  It doesn't help that I haven't slept more than 6 or 7 hours since Monday night. I was up most of last night because Shelbie wasn't at all comfortable.  She had drenching night sweats all night long and a low grade fever off and on today.  Everyone here is puzzled. They continued with two antibiotics and an antiviral as well as steroids and morphine.  Tonight they are starting to ween her off the IV stuff, the morphine pump and quit the steroids and switching to oral meds.  As soon as she can manage the pain with oral meds, we will be able to go home.  They have said maybe tomorrow but likely Saturday.

Her white count has been steadily increasing which is odd considering all the medication she is on but we will see what happens without the steroids since that could be making them rise...but then again, he said that usually only happens with longer term steroid treatment.  So, it's anyone's guess at this point.  We will watch and see what her body does as all the meds are decreased incrementally.  I am trying to get hard copies of all these tests so I can start connecting the dots and keep it all straight and the Hospitalist has arranged to get CD's sent to Utah of her MRI's.  Apparently, they can't just give us hard copies.  I have to pay for them and it takes 24 hours...sometimes I feel like we reverted back to the 90's.  It's right there on a computer screen beside her bed...but I had to sign a bunch of releases and wait 24 hours and pay $5.  Weird.

I had to work tonight so I left for a bit to get that done and take a quick shower and change out of my two day old outfit.  It was sad to leave her...she has been crying most of the afternoon because she just feels so miserable.  Her nurses have been so great with her and very compassionate.  I feel like tomorrow will be a better day, at least I'm hoping so. I don't imagine I will get any sleep tonight either.  Shelbie's up about every hour and by the time I get everything unplugged, the compression machine off her legs, the pain pump disconnected and her on her feet, it's an ordeal and she can't do it alone.

No point in whining.  It is what it is. 

Real Life

"Real Life.  Messy. 
What it means depends on how you look at it.
The only thing you've got to do is

Patrick Ness- More Than This

All. Day. Long.  I've had to consciously look at things differently. 

At 11:15 this morning (Wednesday), it was September 10, 2002 in my mind, with a clarity and urgency I have never experienced before.  In the very same hospital, fear paralyzed me, my legs gave way and I fell into the wall and slid to the floor in a puddle of frantic tears. On the other side of that door,  my little 9 year old, with red on the head, seized uncontrollably.  He was undergoing a spinal tap and all I could think was that it was the beginning of the end for him. 

What followed was a life flight trip to Boise and 5 weeks in the hospital. 

Today, Shelbie was on the other side of the door, undergoing a spinal tap for suspected Meningitis.  It was surprising how fast it all happened.  Her doctor appointment was at 10:20 and by 10:40, we were on our way to the hospital.  At 10:50, Shelbie lost most of her vision and her ability to walk very well.  

As they wheeled her down for the procedure, tears streamed down her face and in a quiet whisper and tight hold on my hand, she said, "Please mom!! Please promise me I won't die.  Please don't let me die." I promised her, I kissed her and the door closed.

I stood alone in the long hall leading to Radiology.  Completely alone.  No one was coming or going or had places to be.  It took all I had to hold it together.  I had been texting Sam to let him know where we were.  His shift ended at noon and he came right up to the hospital.  The automatic doors at the far end of the hallway opened and I saw him in the distance.  I ran to him. I wanted to be brave but I fell apart.  He grabbed me and hugged me..."Hey mom!  She's going to be okay.  You've got this.  We'll get through this."  I was so grateful for him and his words were enough to get me through that moment as I shifted from 2002 to 2018.  

Shelbie is in better shape than Spencer ever was and that is hopeful. 

Finishing up the Spinal Tap

We got word early this evening that the meningitis is viral but they hadn't yet determined the underlying cause.  It is expected that they will have that sorted out in the morning.  It's a crap shoot which one is 'better', bacterial or viral.  In my mind, bacterial can be treated with antibiotics.  In viral, your immune system is on it's own and Shelbie just doesn't have an immune system to speak of.  

She ran into so many problems late this afternoon and evening with medications and getting on top of the pain. She had a pretty rough allergic reaction to what they decided was Ampicilin.  In addition to three different IV antibiotics, they have added throughout the evening, IV steroids for the inflammation in her spine and brain, and IV Benedryl. 

Finally, close to 11pm, she is comfortable and even talking like her old healthy self.  The pain is well controlled with a morphine pump now, her swelling is down significantly and she is resting.  My Home teacher was so kind to come right up after work to give her a blessing and I think that made all the difference in how we both handled the rest of the night.  Our Bishop and his wife came up shortly after our Home teacher.  It was helpful keep our perspective in the moment.

Tuesday night, before we went to the ER, her head was so squishy.  It felt like 1/4" of fluid on it and it dented in when I pressed on it.  I wish now, I had of mentioned that to the ER doc but Meningitis wasn't even on my radar. I don't know why. 

Anyways, we will be here at least three days.  

Our doctor has been absolutely amazing in every way!  I've never experienced him in a crisis like this but he has been so patient and so thoughtful. He's researched, asked questions, listened and more than anything has been so gentle and compassionate....Everything a good doctor should be.  He has been able to visit with our Oncologist and our Immunologist and they gave him their blessing for the way things are being handled here.  The nurses are top notch.  My kids are incredibly complicated and her underlying issues create a precarious situation. 

Tonight, I'm finally seeing some significant improvement and I am hopeful this trend will continue.  I know prayers and combined Faith as well as capable doctors and nurses have all been for our good. 

This afternoon, Sam went to see our doctor about why he is looking so terrible and feeling worse.  He was working this morning when I took Shelbie but while I was there with Shelbie, I was able to talk about my concerns for Sam and brief him on the issues.  Another reason he's such a great doctor. 

I was right, Sam's bilirubin is elevated which explains his yellowish eyes. He needs to start another antibiotic because the Vancomycin hasn't quite finished getting rid of the C-diff.  I will try to break away tomorrow to pick that up.  His blood pressure is still creeping up but now his creatinine is too low.  I don't understand why his kidneys and liver are struggling so much.  My first call will be with the Immunologist and then the Nephrologist.  Spencer is scheduled to see the Liver doc next week so I may see if I can swap kids and take Sam instead.  He also sees his cardiologist next week and we will look into the enlarging left side of his heart and see if that is now causing problems. 

Ya know...this is tough.  I don't understand why things are happening the way they are. I'm trying so hard to look at this with the right perspective but that takes work!  It's the hardest thing in the world to watch the suffering of my kids and be completely helpless and make promises I know I can't keep because I can't keep them alive anymore.  They are totally immersed in the hands of God and all I can do is let them go and stop aggravating His plan for them.  That is both a hopeful yet terrifying feeling.  Why is that, I wonder?   The God who created the universe, who knows each of us by name, who works miracles, has never let me down, ever...is so hard to trust at times. 

In some small way, between the bursts of anxiety and despair, I feel calm, almost detached, as I watch this unfold.  I have a very strong feeling that this episode of meningitis is not some random, bad luck event but rather, meant for a higher purpose and I am watching closely to see what God is doing with this and how it will lead us along. 

Ahhh, for some good news.  Spencer got a hair cut today!  Thank goodness for answered prayers! He looks like my clean cut boy again.  He was trying to grow out his beautiful, curly hair but I think he has been so sick his hair is in terrible shape.  Not only that but he was hired by Madilyn Paige a vocalist from The Voice to shoot a music video for her a week ago.   She loved working with him so much, she hired him to shoot another one today.  It's a song she wrote called, United and the video will debut in China in two days as she kicks off a tour there, tomorrow.  

And....as if it couldn't get any better.  He went on a date tonight!  It felt like a breath of fresh air to actually hear some happiness in Spencer's voice that for the first time in forever, he is experiencing some success in life instead of just being sick and unemployed. 

He has a big project coming up next week that he is 100% in charge of and he said, "K, Mom!  I really need your faith and prayers.  This could be my big break but I can't do it without some serious prayers." 

"Seriously Spencer?  Perhaps you have forgotten that the opposite of everything I pray for happens.  Are you sure you want me involved in this?  Maybe just ask your Atheist friends, I bet God will be so excited to hear from them, you'll actually get somewhere."  Just kidding.  I didn't say that but I sure thought that. 

Okay...well enough of today's messy day...I am so excited to see what's coming tomorrow I don't think I'll be able to even sleep.  

Tuesday, May 8, 2018

Name that kid

I was thinking maybe we should have a little contest...Name that kid...

You guess what kid is in the hospital this week and...if you guess the hospital then you get bonus points!  I'm not sure what you win yet but I'll think it over.

Tonight, I am blogging from Madison Memorial with Shelbie this week!  It's a full house up here tonight but props to the ER doc and our amazing nurse for getting down to business and getting her some relief. 

Her heart rate spiked to 135 and stayed there and her blood pressure is 130/93 so something is up.  She's been running her usual fever too but probably unrelated.  So, here I sit.  She is finally sleeping and things are calming down.

Yesterday, we had a pretty good day.  Everyone was in good spirits and it was as if nothing new was happening.  Today, it's been the complete opposite.  Sam went to work this morning as usual and one of the kids he works with came up to him and said, "Hey man, are you okay? You don't look okay, I think something is wrong with you."  That's a weird thing for a 20 year old kid to say but the truth is Sam doesn't look good and he has been laying down all afternoon and hardly ate dinner.

He is almost done with his treatment for C-diff but he said he feels like nothing has changed.  His blood pressure is back up to really high and his eyes are still a pale yellow.  This week is the week we report back to the Nephrologist what his blood pressure readings have been and he will determine the course we should go in treating Sam's kidneys and blood pressure.  Before I do that, I'm going to have our family doc do some blood work so I can see what his liver enzymes, kidney and blood counts are doing.  I'm guessing his bilirubin is back up.

Our Oncology nurse called late this afternoon to get Shelbie's next round of testing scheduled but I was helping a neighbor and missed the call and by the time I had a chance to call back, it was after 5.

At work tonight, I found out that I will likely be laid off at the end of the month, though nothing is official quite yet.  That's kind of what happens when the people you work for have all sorts of kids of their own who need summer jobs.  I didn't like hearing that one bit. 

I've become friends with the HR person and her husband is dying of Multiple Myeloma.  She had a meeting with the cancer doctors today and they will be telling him the news in two weeks after the last round of radiation, that they have exhausted any treatments that will stop the cancer and then Hospice will start.  I wanted to be emotionally available to her but I find that I'm having a hard time regulating my own emotions and feelings.  I realized as I listened to her that I am completely unprepared for this next phase of our chronic journey.  Even coming to the hospital, a normally 'easy' thing for me to do, filled me with all sorts of anxiety.  We don't really have a good explanation for what is happening to Shelbie yet, until they sort out a few more things.

On the short drive to the ER, I couldn't help but feel a little scared...Is this from the medication?  Are the granulomas in her brain causing problems?  Is this a complex partial seizure?  Does she have an underlying infection? I've always had a pretty good handle on things and an expectation of how it goes but I feel lost in our changing terrain.  Honestly, I have felt lost for the past two years.  Everything is getting so much more complicated than I ever imagined.

Well, labs just came back and she definitely has a bacterial infection so blood cultures, chest x rays, Rocefin and IV Narcotics for the stiff neck and pain...Please don't let this be some kind of meningitis or encephalitis.  Ugh.  It's almost midnight. We will head home in a couple of hours and I think I will start her plasma transfusion tonight and get some fresh immunity in her sooner than in two days when we are scheduled to do it. These are the nighmarish scenarios in an immune compromised person.  I guess we will handle what comes.

Sunday, May 6, 2018

Wandering. Complaining...

Today in Sunday School, the lesson continued on the Children of Israel and their life, once they made it through the dry bed miracle of the Red Sea that was mercifully provided for them.   The conversation was about how they kept complaining, many couldn't do the simple things that were required of them...like the 'look and live' kinds of simple things.  They wished for the 'easier' times when they were in bondage, at least they had food.  There's always an "At Least" we can make mention of.  They complained at every turn as if no miracle had been witnessed along their journey.

It's so easy to read their story and assume that they were simply, ungrateful people because of their murmuring.  How could God in His wisdom choose these people to be the CHOSEN ones?  It takes no effort to pick apart the way they handled their wandering trials in the desert...the trials that lasted not just a few days...but many, many years!  Years of struggle.  YEARS!!  We can do anything for a few days, maybe even a few weeks, but what do we do when it goes beyond that?  Probably complain.

I've thought about the Children of Israel many times as I circle around my own trials that go on without end or relief.

There is no doubt we have been blessed beyond measure.
There is no doubt we have witnessed miracle, after miracle.  Daily, there are miracles.  The fact we even get up day after day and approach the needful things are miracles!
There is no doubt we are being led along and that God is in the tiny, hardly noticeable details of the day.


Does that mean, when I murmur or complain that I am ungrateful? Does it mean that I have forgotten the dry bed of my own Red Sea parting?  Does it imply that I am doubting God, that He can never do enough for me?

Somehow...I think that is the take away lesson we have been taught or heard.  The only acceptable way to handle our testing and trials is with complete, humble, patient, careful surrender to God.   We no longer allow people the privilege of feeling the sad, heartbreaking, sting of the trial so they can feel the calm and healing balm that follows, even if it is only briefly.  Remember the fruit debacle in the Garden of Eden?  Ya...heartbreak is part of the plan...Good and Evil.  Virtue and Vice.  Joy...Despair...these are the essence of discipleship I daresay.

There is much to be learned in the wrestle, that can be learned in no other way or time.  From a couple of posts ago, remember that God is a relentless teacher and giver of experiences.  I can testify, that without apology, He places his disciples in impossible situations so that they can see and witness the wonder that He is in charge.  For us to change from water to wine, as he intends, it is not going to be comfortable, nor will it be easy.  How can he possibly expect us to make that change without a little questioning.  A little doubt. A little murmuring.

The more I listened to the comments in class today, the more compassion I had for the Children of Israel.  The more I appreciated and respected the hardships they passed through as a chosen people.  The most chosen throughout history had moments of doubt or as we like to point out...complaining.

Perhaps the Children of Israel were not doubting God but themselves.  Perhaps they couldn't see how they how much longer the trial would be.  Perhaps they were just tired.

I think being reminded of this today and the added insight I received was a tender mercy.  I have spent more time than I should have, complaining to God this weekend.  I have been sad and depressed like I've never been before.  I have all but thrown in the towel because I can't do this trial perfectly, the way I feel I am suppose to.  It's hard and I'm tired.  I'm so tired and I wish I knew when it would end.  How it would end.  I can't imagine waking up in the morning to the same struggles I left in yesterday...but they will still be there and I will be surprised that everything isn't magically better and the miracle complete.

Yet, there is more for me to learn, I imagine.  The miracle of changing me from water to wine , one of God's greatest and earliest miracles, is not yet complete and the pace is ever so slow.  Without a doubt, I am in the midst of impossible situations so there will be no confusion in the moments when we see the hand of God because man can do no more for us and I have exhausted my resources and reached my human limits.  As we come to terms with this thought, and wander on our way to some promised end where joy awaits,  I think God is okay with me not being okay.  Maybe.  I hope so anyways because this isn't okay but it is where God circled on a map and Christ awaits...ever waiting for us to catch up, watching with love and mercy at every wandering, complaining, turn...


Friday, May 4, 2018

Questions and Answers

I got the long awaited call this morning.  Finally!

Let me start by saying I am so over my life.

Nothing, and by nothing, I mean NOTHING is ever simple or easy or expected.  Nothing.  Nothing at all.  Never, do we have an ordinary day, an ordinary experience. Never.  This may actually be the last post I ever write. I feel like this blog is losing credibility because there is no way, half the things I write can possibly be true, let alone happen to one family!  It's impossible, yet here we are.  I feel like I spend everyday, just clawing my way to the end of it, only to experience shear exhaustion and do it again the next day..emotionally, physically, and mentally.  It's ridiculous.

Let's start with Spencer.  He has some areas of concern- his thyroid, parathyroid and liver.  They are enlarged and inflamed and his parathyroid has a few tumors growing.  His thyroid and parathyroid seem to be functioning okay, his calcium levels are in check so it will be a future of surveillance for him.  Except, we still have no answers on his declining health.

Shelbie...Well, Huntsman ran the wrong PET scan on Shelbie!  They used the same tracers used to detect Carcinoma syndrome which is what they used for Spencer, because he does have all the symptoms of Carcinoma Syndrome.   The orders were written to use the tracers to detect Lymphoma but they screwed that up!   It never fails, we experience more medical mistakes because we are family of three.  I don't understand, just because two people have the same last name, they screw it all up.

However, she tested positive for Carcinoma Syndrome markers, yet has no symptoms.  So, that was unexpected.  To further investigate this new situation, she has to do a 24 hour urine test to look for a certain protein that carcinoma cancer produces.  That's the only way to confirm the findings since there isn't always a solid tumor in Carcinoma Syndrome.

So, because they did the wrong test, we don't have accurate information regarding the possibility of  lymphoma.   I have heard many of the same comments over the past two weeks that basically sound like this...
      "Well, either it's lymphoma or it's not. I don't understand why they can't just say."

       "It shouldn't be that hard to diagnose."
        "I don't think you need to be as worried as you are."
        "It didn't take my (Insert...aunt, uncle, dad, cousin...) this long to be diagnosed with lymphoma, so she must not have it."

They are well meant comments but another confirmation to me that we don't belong in this world where everyone expects 'normal' and we are far from it.

This is why it isn't so easy to make this call...
      1.  They did the wrong test.
      2.  Shelbie has CVID- Common Variable Immune Disease.  Her particular variation includes granulomatous disease.  Granuloma tumors grow throughout her body but especially her lungs.  Granulomas look identical to Lymphoma on a PET scan or CT scan.  They metabolize the radioactive tracers the same way cancer does.   The only way to differentiate between the two diseases is to biopsy the tumors. The PET scan allows doctors to see growth and metabolic activity.
     3.  They aren't very excited to biopsy the tumors because they are in her lungs, wrapped around her aorta, in between her organs, and behind her heart.  There are no tumors that are close to the surface that they can go after.
     4.  Her body basically acts like the granulomas are cancerous even though they may not be.  She has had a fever for two months now, night sweats, daily nausea, weakness and fatigue.  So, we can't even rely on the clinical picture of symptoms because again, they mimic cancer.

Here is the plan...
     1.  In two months they will rescan her, this time using the correct radioactive tracers.
     2.  Theoretically,  she will have a bone marrow biopsy next week to make sure the abnormal cells seen on the blood smears 6 weeks ago weren't the start of Myelodysplasia or Lymphoma that is in her marrow.
     3.  Collect the 24 hour urine.
     4.  Our Oncologist is consulting with a surgeon and they will review the scans again to see if there are any of the tumors in question that could possibly be surgically removed without being too invasive or too dangerous to retrieve.

All of this may still leave us without answers  in which case, we continue to watch for increasing symptoms and scans every few months to watch for steady growth of these tumors since granuloma disease and CVID typically develop into cancer as the natural disease progression.

Finally, if they decide it isn't cancer, then the problem we have is that CVID is progressing at a rapid rate, since she has so many more new tumors in her lungs and abdomen than 2 years ago, and the initial tumors that are still there have grown significantly.   There may be a treatment I am unaware of but we will check in with our Immunologist who follows the CVID to see if he has any other tricks up his sleeve to manage the disease.

So, many more questions and very few answers.  Hopefully, this explains why it has been so difficult to make the call...it's virtually impossible to decide what to do since both diseases are extremely serious and mimic one another.  I know our doctor is terribly conflicted.  He has been so good to consult with other physicians since we are a rare and complicated case.  I appreciate his efforts for sure. It's not easy and it's frustrating.

Wednesday, May 2, 2018

While We Wait

Still waiting.  If there was a soundtrack for my life it would be that terrible music you hear when a government agency puts you on a 'brief hold'. 

We are still on a brief hold...just waiting for the worst news of my life.  Okay, that might be an exaggeration.  Maybe it will be fine and I'm just over reacting.  But fine never took two weeks or more of deliberation.

At any rate, let me ramble whilst we wait...

On Sunday, I was talking to a church leader in my Sunday School class.  He is always genuine in our brief exchanges of conversation and his words are inspirational.  He and his wife are no strangers to difficult trials.  He asked if he could send me something he wrote when his father was gravely ill.  Of course, I was looking forward to receiving it.

I have read it over and over, literally over 15 times. When I read it, it feels like it poured from his thoughts a stream of consciousness, effortless poetic words about God, "...our great and relentless Pedagogue".  I don't have permission to post it, but here are a few of the lines that stilled my heart. 

 "Thou Giver of life and of death,
 Thou Giver of joy and of grief,
 Our Father God, thou great relentless Pedagogue,
 Help us to learn our lessons,
 Help us ever to choose Thee."

I love the perspective that God is a giver of life and a giver of death.  He gives us joy and he gives us grief.  He doesn't carelessly thrust these difficult things upon us, he gives them to us...an offering; a gift. 

In another part of the poem, I loved this string of words...

"Lord God of the still, small voice,
Lord God of the scream in the night,"

And this passage...

"Our great God of light and of peace,
Our great God of our unanswered pleas for relief,"

It was such a beautiful poem and there was so much for me to learn from it.   I haven't been that familiar with the term 'Pedagogue' so I looked up the origins of the word.  It means an especially strict teacher.   Interestingly enough, in Greek terms, Paidagogos, denotes a slave who accompanies a child to school. 

Clearly, we are children of a God who relentlessly teaches us the great and terrible lessons of life, for which, at certain times along the path, we feel their holy purposes, with gratitude even.  At other times, all we can feel are the terrible parts of the great plan.  I can see, after reading his poem, that both responses, the holy grateful and terrible despair are inherent and necessary in the Great plan we often call, happiness.

Maybe the weeping and the wailing, distress and grief, are just as meaningful in our wrestle to gain the title of true discipleship.  Maybe they are feelings even more important than a quiet resolve, we are misled to believe is the only acceptable way to embark and travel through a trial, regardless of  its advancing difficulties. Yet, we feel so much shame in admitting we feel these negative, overpowering feelings more than we should.  Could it be that these feelings are exactly part of the experience God intended for us to have?

Our trials are meant to be seen as gifts, given with the same love, that accompanies blessings. There are great lessons to be learned in trials, and holy moments to rest inside of.  I admit, like the root of the word pedagogue, I often feel enslaved to the trials, being dragged into the lessons, the constant testing and trying, the fatigue, the despair, the angst.  Perspective and remembrance of a loving God, giving the trials as an offering, is lost on me as I slave away in the suffering; and learning, purpose and meaning, vanishes.  We can either be a slave or a student.

While we wait...we learn and we weep and wail and wonder at the slow pace of this trial.


Tuesday, May 1, 2018

Remember What You Know

We just survived the longest weekend in the history of weekends. 

Still no news from Oncology but that may not be the most shocking news of all in the past 12 hours. 

Spencer got in another car accident!!  I'm not even kidding.  Not one bit.  It was the call of shame I had to make to my insurance company..."Hey, ya know that really nice rental car you provided for my son?  The brand new Toyota Camry?  The beautiful navy blue that sparkled?  Ya, that one...the front bumper might be missing and the doors...they aren't so sparkly anymore."  

Oh. My. Gosh...What is happening to my life? 

Spencer was on his way to return the rental car and pick up his 'new' car but he made one stop at the bank to get the money for the car.  While the car was parked, a man, not paying attention in his big work truck, turned too sharp and nailed the rental.  Tore the front bumper off and scraped his truck down the side of the car.   

He didn't speak good English but Spencer was able to determine he didn't have any insurance and before he could call the Police, the man took off.  Unbelievable.  So, I'm stuck with another claim!! Another deductible!! I can't even believe it.  I'm still in utter and complete shock. 

Wait...there's more. 

I saw my Nephrologist.  A new one actually but in the same practice.  I didn't hit it off with the first guy I saw so I did my follow up with someone else.  He was pretty amazing.  He doesn't think we need to resort to a Kidney biopsy just yet.  My kidney function is actually improving but the red blood cells still showing up is a concern.  He listed 5 possible things it could be, all of them relatively uncommon but one is an immune dysfunction of the IgA antibodies.  He doesn't think it's Lupus. 

He was intrigued with the cyst in my left kidney and he asked, "Has anyone been worried about the fact your left kidney is nearly half the size as your right?" 

Huh??  NO!  What the heck.  That kind of seems like an important thing to mention. At least 4 doctors have looked at the exact same set of scans and never said a word-  including two Radiologists.  I'm so bugged by that.  Anyways, long story short, because I recently finished three weeks of Prednisone and had two injections in my hips two weeks ago, he wants to see what happens as all of that works out of my system and then do a CT Scan with contrast.  He and I both question if the cyst is really a cyst because of where it is located.  He is a little concerned that I have a problem with the renal arteries and my left kidney isn't getting enough blood flow.   The CT scan will be done in August.  He made me feel totally comfortable waiting three months but of course, if things go down hill, we will schedule it sooner.  My blood pressure has never been so low, my cholesterol is greatly improved as well.  So, I guess all the supplements and stuff has been helping some and maybe the prednisone as well.  Time will tell. 

I did call our Oncology nurse to get an update.  She was understanding that I am so overwhelmed and anxious but reported that our doctor was obtaining opinions from a few more specialists and would call as soon as he had answers for me.  This has trouble written all over it.  

I've spent a lot of time this afternoon trying to keep myself in a place that doesn't involve the worst case scenario.  A thought came to my mind that I think I heard from Jeffrey R. Holland.  He said something to the effect, when there are no answers to the questions you face, remember what you know for certain.  

I think that has been my Hail Mary today.   I know without question that our Oncologist has been prepared to take care of my children and we were led to him.  I have been able to experience his expertise many times before but the experience that comes to mind was when we had just left Salt Lake from an appointment after one of Shelbie's strokes.  We were about an hour out of town and he called us back to admit Shelbie for 10 days while he did a bunch of testing and introduced us to our Neuro Immunologist.  I know he is thorough in his work.  Not only is he a doctor but he is a scientist and he has pioneered several new treatments for Leukemia, Myelodysplasia and Lymphoma.  He has an amazing new study that he was just recognized for this month.  I know if he doesn't understand what is going on, he will go to the ends of the earth to find someone who does.  He is humble in every way.  I know he cares about my kids and he takes our situation seriously and carefully. 

As hard as the waiting is, all I can do is trust that God is guiding him to make the correct diagnosis with the most effective treatment plan...that treatment plan may be that there is nothing more they can do to stop the tumors from spreading and growing and we will have to come to terms with that. But still...I'm a basket case.   Without a doubt, there is going to be some post trauma to answer to. 

Our difficulties continue and while I don't understand the whys of it all...I will hold on to what I know for sure.  

It's the Most Wonderful Time of the Year!!

29 gifts!  My traditional way to start the new year...give away 29 acts of service in 29 days is back in my life and week one is done! Eve...