Half the Energy, Twice the Spunk

I am routinely surprised at how fast time just slips away when I'm not paying attention - It's been waay too long for an update, and there is indeed much to update.

I'm not really sure where to start, so I'll kick things off with kid-news. The boys are both doing very well - they are wrapping up school and are easily slipping into 'summer-mode' as the days warm up. Brandon has made friends with a little girl across the 'dandelion field' who routinely runs through the field that separates her back yard from my parent's. I can't tell you how it feels as mom to watch a little girl run across a field, just to come to the back door and ask if Brandon can come out and play. So many times I have worried and wondered how other kids will treat him, and whether he will be blessed with the same awesome freedom of imaginary play in the fields around my own home growing up... So much was learned and shared and so many memories were made by the completely natural acceptance that kids who live near one another fall into. I have found myself awake at night worrying about whether Brandon would have that joy, freedom and opportunity for growth that most other kids enjoy without a second thought. Last Sunday, disguised as a little blond haired, blue eyed girl who was so happy to find a friend across the field - one that was her age, and liked the same things and played the same games - and her one and only response to the fact that Brandon does not talk - "oh good! I know some sign language from school!"... and off they went. She has come to my mothers back door countless times in the past weeks, each time simply asking if Brandon can come out and play. And he can. And does. And my heart completely melts. And I am, once again, amazed at the complete acceptance, and the total dismissal of any of Brandon's perceived 'limits'. To her, he is just a boy across the field who likes to pick flowers and play make believe.

That just might be the single greatest gift I've been given in the past months. The reassurance not only in Brandon's ability to make and keep friends - but in the ability of the children around us to simply dismiss all the things we parents have worried and fretted over.

Throw in the little boy next door who has befriended both boys (mostly Tyler though as they are the same age) and I have had a lovely time watching all the 'normal' going on in my parent's back yard. Summer is shaping up to be lovely.


So that's the boys - both great - loving living at Ama and Grandpa's house, being spoiled by all the various caregivers that wander in and out of our days... and amazingly, resiliently, taking every bump, turn and hurdle in stride. And finding quiet moments to sneak in some 'mom' time wherever possible - be it stories, a movie together, a computer game together or simply googling how to grow peanuts or how many recipes we can find that include 'crickets' of any form...


On to the less 'fun' stuff. As you have likely gathered, we are living at my parent's place for the time being - I am useless without the nearly constant assistance from various family members, cousins, neighbours, friends, and other awesome kind-hearted people in our lives. Living at my parents means we are closer to the rest of my family (our home is about 15 minutes away from my parents home - and everyone in our 'support network' lives near my parents rather than us), and it means my parents are able to help with the day-to-day minutia that would leave me unable to function by mid-afternoon.

I am profoundly dependant on those around me - it is possibly the most difficult part of all of this. I have been so fiercely independent through even the most challenging stretches of time - but now I am done. I need help with everything. The kids care is heavily covered by family - feeding them, keeping on top of Brandon's meds, tube feeds, baths, school, etc - I can literally do nearly none of it.

I struggle daily with the reality that, even if I truly wanted to (which i do on many levels and absolutely don't on others), I could not move my family back home at this point. We've accepted that at this stage in the game (And we've learned through trials) I am unable to care for myself, never mind my children. I have no strength to do anything beyond park myself on the couch or lazyboy and read/carve wood/write/watch TV/ putter online (and online puttering has dropped drastically - the desire to draw comfort from those in similar predicaments has been overrun with the 'reality' many of those folks face. Realities sadly worse than our own - which is pretty dismal at times.

So yes - most of my day is spent on a couch, when I am not shuttling back and forth to the ER for more IV antibiotics (courtesy of an ill-timed kidney-infection-wanna-be), or to the city for chemo, appointments, procedures or any other exciting soiree at a random hospital.

The lack of strength, and inability to care for myself and my kids has been a hard pill to swallow.

The long term implications scare me.

We have alot of hope that once the chemo kicks in, I may well get back to a functional level - but we are also being logical and trying to lay some groundwork for long-term implications if things do not go as we hope they will.

Basically we will have to overhaul our life.... I cannot be alone for any stretch, with or without kids. I cannot drive (and will not in the forseeable future). I cannot clean or cook. I cannot tidy the kid's rooms/messes. I am, for all intents and purposes, more dependant than my kids in many ways. For anyone who knows me, they know THAT is the toughest pill of all for me.

Unfortunately this makes moving home a challenging goal.

In many ways I am very eager to be at home, around my things, and books, and just 'home' with my family. I miss morning coffee on the deck and kiddy pools on the grass, and hours of 'play' outdoors for the boys. I want to cook for my family, and get the boys off to school in the morning. I want to sit on my couch in the afternoon when the boys are both at school and Dave is working and just revel in the alone/quiet time to read... instead the idea of that scenario fills me with panic.

The sepsis infection a month ago (April?? I can't remember now - we've lived with my parents ever since, first out of convenience, then necessity, now - fear?) scared the crap out of me. The morning I was at my worst I quite literally could not even give myself the advil and I'm fairly sure if Dave was not there things would have gone very very badly. That stole my confidence in being independant.

Thankfully my parent's place is and always has been 'home' for me and the kids (and Dave will reluctantly agree as well). And more thankfully my parents are awesome - as are my aunts, uncles, cousins and friends who have helped to ensure (and continue to) that I am not alone... They have made my newfound dependance on others a bit easier to adjust to, and the opportunity to get closer to so many family members and friends has been an unexpected blessing.

Because of this circle of family, I don't find myself alone, either at 'home' (my parents - which they have completely made 'home' for me and Dave and the boys) or at hospitals - Chemo days are filled with family (and this week board games with my cousin Becca!) - appt's are chances to catch up with aunts or uncles, and scary procedures that require I stay in the city overnight are a chance to stay with my brother and his family and catch up...

I have leaned heavily on my family these past months, and they have not failed to stand strong.

My hope is that with time I can lean less and less - but for now, I find comfort in their company and assistance... and I am continually blessed with this chance to truly get to see how tightly knit we really are. You are all amazing, and you all know who you are I'm sure.

It is 5am and I have yet to get any sleep - between the chemo side effects and Brandon's newfound fever (cold) I have pretty much dozed in and out tonight - but I"m not concerned because tommorrow (today? - in a few hours?) I know I still have lots of family to lean on to help... and a day with my boys on the couch lined up sounds just about right.

I'll try to update more - and hopefully more coherently - sleep deprivation and general chemo-crap feeling isn't making the words come easily this morning.

good night.

K

In spite of pretty sparse updates on my part, alot has indeed been happening.

I'll make this the short version...

In March Dave and I met with the oncologist/hematologist to discuss treatment options. We were given several choices, all with different sets of risks/side effects/effectiveness. As is usually the case, the more likely the option was to work, the worse/scarier the side effects were.

The decisions were basically 'drug A - with lots of scary side effects, and a 30% chance at working' or 'drug B with a 70% chance of working and even more/scarier side effects. All the choices were different types of Chemotherapy to supress my immune system and the irony of chemo is that while it can cure cancer, the side effects almost always have 'cancer' at the top of the list. So yea.

Initially we chose the less awful (and less likely to work) oral medication as it seemed a bit easier to wrap my head around. Unfortunately that option would take 13-15 weeks for me to see any improvements and it would wipe out my immune system completely.

We were comfortable with that choice and we were working at making it happen (perscriptions needed to be written and I had to have a cardiac assessment first as a baseline).

Unfortunately, while working on that, the end of one of my central line lumens broke, and I had to spend a day at the ER getting it repaired. It was pretty easy and really just took a day of inconvenience and life went on.

2 weeks after the fact, I went for my regular bloodowrk (drawn from the lumen dedicated to bloodwork - the one that had broken and hadn't been used since). 6 hours after the bloodwork and subsequent flushing of the repaired lumen, I was at the ER with a fever of 105 and bloodwork/a CBC looking strongly suspicious for a central line infection/sepsis.

The next few days were some of the sickest of my life. This bug was a doozy.

I've always been told that central line + fever = ER. I don't EVER get fevers unless I have a serious infection, so there was no 'I'll just wait it out a day and see if it passes' with me - any fever over 101 and it means I am a sick sick girl.

This was no exception - at 6pm I was feeling great - made the boys pizza for dinner, tidied a bit, had a good day and felt awesome. At 7pm my temperature was 104 and I was flat out. By 8 I was at the ER with my aunt (Dave stayed at home with the boys - thankfully it was his day off).

In hindsight, I've been told that 1) my paranoid freak-out-and-run-to-the-ER reaction and 2) The ER doc's overcautious reaction and immidiate Rocephin infusion (antibiotic) very likely saved my life. The bug that grew in my blood was a gut bug called Ent. Cloacae - one that carries up to a 52% mortality rate once it goes septic - particularly in those with compromised immune systems. Any 'silliness' that we felt around racing off to the ER 20 minutes after I spiked a fever is officially gone as it quite literally made the difference between feeling crappy for a few days and winding up in the ICU (or worse).

The experience fairly quickly got my priorities in order. Scarier side effects or not the treatment that is most likely to get me off TPN (and therefor off a central line) is the one we have to go with.

I saw Oncology on Monday, had my Vas Cath (large bore central line that goes into the jugular and hangs out of my neck) was placed on Wednesday and my first plasma exchange was on Thursday afternoon. I will do a full round (2 weeks) of the plasma exchanges, staying in the city with my brother and his family on treatment days, and trying to come home on the day in between. Once that is done I will start a 4 week course of chemotherapy. If all goes as we hope, the plasma exchange will put me in remission within about 10 days (this is the 4th round of Plasma exchanges and the past ones have always led to remission after 10 days or so), and the chemo will keep me there for up to (hopefully!) 18 months. At that point when symptoms return, we will once again do another round of the chemo.

This is a lifetime - nobody goes into remission forever. the average is 6-8 months, some are up to 18 months. If this works i will be in it for the long run.

It's scary as hell. The side effects are terrifying (seriously - and 'terrifying' from the perspective I'm at right now is pretty damn awful). There is still a chance that it won't work.

We have to try though - and we're working hard to be optomistic.

This weekend I am 'home' - at my parents - my home is too far from the ER for me to be comfortable with the Vas Cath in - it's a massive tube in my jugular that has a habit of occasionally bleeding - bleeding from the jugular is pretty much the definition of 'bad' and not the kind of thing you want happening when you are 15 minutes from a hospital. 'Home' is a few weeks away yet.
I'm enjoying my boys for the weekend then back to the hospital Monday morning.

Onward and Upward.

I talk often of the '2 hour black hole' we live our lives in - we can not plan anything concretely beyond the next 2 hours as things can change just that fast. Yesterday at dinner I was doing great, making pizza's for the boys, puttering around the kitchen, and then around 6pm I stumbled down that black hole. Suddenly started feeling tired and just totally overwhelmed with the idea of getting off the couch. my temp was fine but i felt like trash - figured I had done too much as I went shopping with Dave and did a lot of walking. By 7pm my temp was 102F (39C I think) and I felt like a bag of crap. By the time I was triaged at the ER I was at almost 40C (104F?). Not fun.

They got me in really fast (apparently 'central line' and 'fever' tends to earn one a room immediately) and did labs and cultures (from both arms and the line). My white cells were ok (good news) but there was a significant 'left shift' (some sort of calculation they do with numbers of different white cells - a strong left shift almost confirms a bacterial infection somewhere). He sent the cultures and started me on IV Rocephin (once a day IV antibiotic - the 'good' one when it comes to wanting to go home and just pop into the ER once a day for a dose) and suspected we could ride it out at home with the daily abx.

This morning I woke up feeling the sickest I have ever felt in my life - shaking chills, very high fever, just really really awful - Dave had get the advil, crush it, and put it through my feeding tube as I was too sick and shaking etc to even do that myself - it was really scary for both of us and I nearly went back into the ER right then. thankfully the advil worked well and I was feeling a bit better.

Dave had some lawns to mow and yards to cleanup so my aunt came over to hang out with me (im not allowed to be alone with a potential line infection). Parked my butt on the couch and planned to do nothing but watch TV all day.

Unfortunately my body had different plans - I fell asleep at 11am, and woke up at 1 to the phone ringing. It was the ER doctor having a bit of a panic attack. My line cultures had grown gram negative bacteria (haven't asked the do which bug specifically) in less than 12 hours (it's pretty rare for a blood culture to grow anything before the 24 hour mark I'm told). Anyways after stressing very much that I was to basically drop what I was doing and beeline for the ER I got my neighbour to drive me in - thankfully my Aunt was over (thanks Heather!!) and was happy to stay with the boys until Dave was done. Same deal tomorrow - Heather will come at 5am so dave can go to work, then she will take the boys to school and pick them up - Awesome luck she retired a few weeks ago and has her days to herself at the moment - major help.

Anyways - the bug they grew is apparently just not possible to eradicate from the line so they are popping me in an ambulance, and taking me to HSC to have my line pulled in the morning. Not sure what the long term 'keep-keely-from-drying-up-and-starving' plan is but if we can at least get fluids through an arm IV I am hopeful I can go home in between doses etc. We'll see how the night goes.

Well I'm falling asleep at the computer here so I should wrap this up…

I'll update when/if anything changes - in the meantime well wishes/prayers/etc are always welcome. Anyone local that wants to give us a hand in the coming weeks (I'm going to be pretty useless for the next few weeks as I recover - blood infections are not quick 'bounce back' type of illnesses) please either email me, or (likely better) call Dave or my mom and they can let you know if we need anything at the moment - one thing we will likely need is rides into Selkirk a few times a day - I am hopeful we can find a few people willing to help with this so no one person has to drive too often - if you're able and willing to offer rides, please just facebook/email me and let me know what days/times you are available and I or Dave or my mom will get in touch with you as we are going to try to put a 'schedule' of sorts together.

Thank you for all the support and help - we appreciate everyone, even if all you're able to do is send me an email - just chatting and keeping in touch makes such a difference!

I'll try to update tommorrow - I will be at the city hospital in the morning to have the line pulled and we will make some decisions there about longer term plans.

Maybe it's because I 'missed' the fall time completely - or rather enjoyed watching the colors change from my 6th floor window at the hospital - but i am just feeling like it can't possibly be spring already!

Our lives have changed SO much in the past year... 2 long hospital admissions for myself, and now I am muddling along on TPN with central lines, and feeding tubes, and all the necessary medical 'stuff' that comes with all that. Between Brandon and I, our med schedule, and the IV and central line care I feel like a full time nurse most of the time.

But - we have hit a pretty decent 'plateau'... I am weaning off the steroids slowly as the side effects were too severe to stay on them - and I am feeling the lower doses... my gut, which could handle small amounts of a handful of foods has mostly just stopped again completely... I can put meds through my J tube (So thankful for that - I can put narcotics or nausea medication through it, and it goes directly into my intesting, and is absorbed in minutes so the relief is very fast - if I were to swallow the medicine, it could sit in my stomach for hours before it was finally moved along to the intestines and absorbed... I only use the J tube for meds but it is sooo worth having.) But any attempts to eat food result in pain, nausea, and me looking 8 months pregnant...

That said - if I behave and avoid food, I feel pretty good and I'm home with my family so I won't complain.

Part of my effort to avoid food has involved me learning how to use the tools in Dave's shop, and making pretty things out of wood! I am going to set up a table at some craft shows over the spring/summer to sell said pretty things - I'm really having a BLAST out there - I've been making trucks of all sorts for the boys (much to their delight!) and boxes, necklace holders, and other random fun things... using up scrap wood and having lots of fun doing it :)

Brandon is doing GREAT. I cannot state that enough... he is in such an awesome place medically right now - strong, healthy, happy, smart, and stubborn as ever (we encourage this - he will need it in the long run... though it can test my patience... LOL!)

Tyler too is doing wonderfully - he adores kindergarden and as of last week he can read!! It's slow work and he has to sound stuff out carefully but he can do it!!! Brandon is SO close - we will be very excited when we have 2 readers on our hands - I don't have to explain how Brandon's life will be transformed by the ability to read and write to us... I am very eager to 'read' what he has to say... :)

Well that's our spring update... I will attempt to be more consistent with updates... usually no news is good news!

I wanted to share quickly my cousins blog adress.

http://hurrybeforeweallcometooursenses.blogspot.com/

Karli is my young, amazing, brave, awesome cousin who just returned to South Africa for the second year to volunteer at an orphanage. (after months of coming here and helping us with the boys and my hospital admission etc

She is amazing, her stories are amazing, what she is doing is amazing, and I'm excited to read of her impending adventures.

Karli you always inspire me to do better - to look around me, and do what I can to make the world a little bit better. At home or in Africa - you are doing your best to make this a better place in teh way your heart is telling you to. Thank you for being so awesome my friend!

Keely

I can't believe how fast this year is going by already!

The past 2 weeks have been good ones.

I'm in a place where things are stable, pain is managed, symptoms are under control, and my energy levels are fantastic (apparently getting enough calories makes a person feel really really good!).

I'm on pretty heavy doses of narcotics and antinauseants to BE in that place, but that's a small price to pay.

Right now I'm still getting about 80% of my nutrition via IV TPN, and almost ALL my fluids that way. I hook up in the evening to 1L of saline with sugar in it, run that in over 2 hours, then switch to the TPN (nutrition) for 12 hours.
Most mornings I'm supposed to hook up to 1 more litre of saline with sugar, but i've been skipping the morning litre as I am drinking some during the day, and by the AM I just want to be 'untied'.

The boys are doing fabulously, so I'm very greatful for that!!

This week we will be making some decisions around the 'next step'. We should have had this sorted out weeks ago, but i have been letting things slide as I'm really enjoying just 'being' for a while.

But - it's time to start moving forward - I have been 'coasting' on high dose steroids for a while now, and my body is suffering for it - the doc diagnosed me with 'steroid induced diabetes' this week, and I'm very swollen from the prednisone - it's time to start looking at other options. I suspect the next step will be Rituximab - a chemotherapy drug - which is a bit scary, but can work wonders for some people.

fingers crossed!

I'll update when I have news!

K

Wow it's been way too long since I've updated this!

The past several weeks have been a roller coaster but we are now on day 10 of a pretty quiet streak.

In a nutshell I have spent far too much time in ER's and OR's on account of severe allergies to the antiseptics they had me using on my central line - lost my PICC line, had a tunneled line placed in my chest again and now that we are using the right tapes and the right antiseptics (Iodine - the downside is my chest is dark orange all the time now - but at least it's sterile and not hivey!) things have settled down nicely.

I have gained a bit of weight (yay!! mostly fluids - but there is some 'real' weight in there too we think!), and the massive doses of IV steroids they had to use to treat the allergic reactions (basically it would start as a few red marks around the dressing, and within hours I was completely covered in hives and my mouth was going numb - it was dramatic!!) have actually stirred my gut up a bit and I've been able to tolerate some tube feeds, and some oral food! Nowhere near enough to go off TPN or even really cut back much, and I cannot drink enough to stay hydrated, but it's a very small improvement - after nothing but decline, a very small improvement is welcome.

All that said - I am still totally dependant on having people around. I cannot drive more than up the block to the school and back - and even that has to be carefully timed with my meds. I am on lots of narcotics and antinauseants just to be able to function, so my ability to think rationally and stay focused etc is limited - While it's hard financially and emotionally to need Dave home full time right now, it is necessary.

We have been doing odd jobs (making perogies for family, knitting, sewing, Dave is clearing snow, shovelling roofs, odd jobs etc) when I'm well enough to prop up our income - but at this point Dave is on the hunt for full time employment that is flexible enough to have him here when I need him. A tall order it turns out.

That aside - I am doing well.

I am hopeful. The fact that the IV steroids (and massive doses of oral prednisone I'm continuing on) did anything is extremely encouraging for future improvement.

My GI appointment this week was a positive and negative one - but we are focusing on the positive (that there is hope for some improvement, and that right now, the TPN and fluids are keeping me strong, giving me energy, and keeping me at HOME). The downside is it's clear my gut is not happy. I start the day out look somewhat OK, and by dinner time I look 6 months pregnant. No exaggeration - I am in my maternity pants and was asked when I was due the other day. It's shocking really. The GI said he has no idea if or how much things will improve but he told me to stay hopeful. So I will.

We have a few 'next steps' for my treatment.

1. Pulse Steroids (IV massive doses, every few weeks) is one option - good: it works. Bad: LOTS of side effects (bad ones)

2. Rituximab is another option - it's a Chemotherapy drug, and it is also brutal - but can be miraculous for my condition sometimes.

3. Mayo Clinic - at this point Mayo is more for academics sake - we have local docs willing to treat my autoimmune condition, using protocols developed at Mayo. The Mayo neuro team is booking about 5 months away so I wont be seeing them anytime soon - but my local docs are going to go forward with treatment trials and hope for the best.

4. My family and friends have been nothing short of amazing. You all know who you are, and you all need to know I am humbled and proud to know you and call you family.


Right now, Today, I had a good day. My family is going to bed under one roof tonight, and for that I'm thankful.

Thanks for checking,

K