Half the Energy, Twice the Spunk

I just typed a far far too long and disjointed entry.

To save on time, I will be brief today. Should you want more details on any of it, pleas ask... Questions are always good. Especially when the come from the '12 and under crowd! Either email, or just leave a comment with a ? and I'll explain whatever you want.

GggyjQuestions are totally encouraged, and I'll answer any questions as best I can. Please encourage the kids in the family to express their questions... All in all the questions from kids tend to be the best ones.
;66
Alright... Here's a timeline that will bring us to today:

July - 5 cycles of plasmaphereskis followed by the IV rituximab (chemo drugj) every week for a month.

August - two admissions for uti/kidney infection/urosepsis.

September - inpatient again for urosepsis. At this point I was seeing benefits of the rituximab, and I was eating almost totally by mouth. The tunneled line was pulled before we got word on the cultures.

October was lovely. No TPN, no central line... It was a glorious month!

November was the start of the spiral. By late November I was losing weight , dizzy, my heart was a mess, I wasn't eating and more often than not I felt pretty crappy.

December was spent getting a new central line (I have a port a cath), starting the new drug, and getting a few cycles of IVIG. First cycle landed me inpatient for a weekend due to aseptic meningitis.

This past week has been a bad one. Too many bad days and far too few tolerable ones, never mind 'nice' days.

I chose today to postpone the next IVIG dose, as I've had a very sick week and needed a break.

A huge thank you to everyone, for the moral support, physical supports (my laundry gets taken care of)' and financial supports (6 months of no work after he got let go for missing too msuch work on account of what's going on, combined with the tremendous drop in income when he finally found work that allowed the flexibility we require... Add in the thousands of dollars we pay for insurance, meds, travel, parking, gas money, missed work to care for me on bad days throughout the year... It's been a challenge as the life we had was based on twice the income.
I'm reminding myself that I'm here, at home, with my family and that should be more than enough... But when we are constantly reminded that any attept to get ahead financially is usually tossed out the window (we spent two years pouring money into our adoption account. We managed to save up over four grand. In one swoop it was all gone, between insurance co pays (it's great that my wheelchair is 80% covered but that still leaves nearly a grand from us) and life in general.


Just a grumble... I always knew it was expensive stuff being sick, but I had no idea. At this point we have about $20,000 worth of equipment for Brandon and I waiting to be ordered (power assist wheels for my chair, a new chair for brandon, basic supplies for tube feeding, and a host of smaller things we have on that list) because we don't have the money or time to organize the orders.

Just sharing the realities most families like ours are faced with...


Well enough of me babbling. I'll try harder to update a bit more often.


Please pass this link to anyone else you think might want to stay updated.

K

Wow - I need to do some serious revival work on this blog!! Life is so hectic it's hard to remember to update!

It's been a good few months, and a pretty rough few as well. The boys are at school and loving it, taking the bus like big kids ( **sniff** ). Very healthy and growing like weed. :) Parents often report a bit of a honeymoon from the major mito stuff when kids are about 6 or 7 - the high energy demands of infancy are no longer in place, while there is growth and development happening, it's at a slower pace so it doesn't require as much energy from the body. We have definitely seen that - Between Brandon's feeding tube, and this plateau we are hanging out on at the moment, he's really just thriving. We know the next major hit (often a harder hit than the one children deal with in infancy) is expected to come with puberty, but we're hoping it's not too hard on him.

Dave has settled into his new job and is really enjoying the people there as well as the ability to come home at the end of the day. We're all happy to have him home!

Onto me

It's been a ride.

I'll do the 'nutshell' version just to cover all the bases:

January
Discharged in January '11
PICC infection, line pulled, tunneled line placed, days in the hospital.
Several doses of IV solumedrol, and high-dose prednisone orally.

February
High Dose Prednisone through the month
Noticeable improvement
LOTS of energy, jogging, feeling pretty great.

March
Steroids induced Type II Diabetes
Weight doubled to 165lbs in less than 3 weeks.
Off the steroids and start investigating chemo.

May
Line breaks - HSC repairs it
Severe sepsis blood & line (due to line repair)
Heart/Blood pressure goes down
Motility stops

June
Recovering at Moms
Preparing for Chemo (Rituximab)
Surgery (Vas Cath)
Plasmaphoresis

July
Weekly chemotherapy (rituxan)

August
2 week-long admissions for UTI/kidney/sepsis infection (Urosepsis)
Officially in remission mid August

September
another week-long admission for resistant Urosepsis.
Line pulled, TPN/Fluids stopped.

October
Fungal skin and mouth infections (lots of antibiotics = lots of yeast)
heart/blood pressure deteriorating
GI deteriorating

November
Officially relapsed.
Prepping for a port-a-cath placement, starting fluids and TPN this week or next, and gearing up for some 'real' (nasty) chemotherapy.

Merry Christmas.


We are now looking at a very upside down holiday season once more.
The hope is that we can keep me home for the holidays this year - and with the speed my GI team is arranging stuff I think I might actually manage to stay home.

I'm discouraged, exhausted, scared, angry... the whole gammut. The first 3 relapses and 'starting over' that followed were awful. Now I'm there again, starting from a place where I am sick, weak, nauseas, in pain and a touch emotional and even thinking about the weeks and months that lie ahead leaves me completely befuddled.

I hate this disease - it 'gets better' with treatments just long enough for me to go 'wow! I'm actually better!' then it pulls the rug out from under me. Over and over again.

So yea - I'm totally overwhelmed at the moment. We are working on getting set up with a private nurse so I can stay home through infections when possible. Working on a Port date ( https://www.haemophilia.ie/uploaded/image/Port%20A%20Cath.jpg - this is a diagram of what a port is - if you want more info just google it - it's a central line that lives under my skin and is accessed with small needles daily - the perk is at the end of the day I can remove the needle, and not have anything at all on my skin!

I'm looking forward to being hydrated again - and not waking up miserably sick..

So that's us - I see Oncology on Monday to arrange Chemo and the TPN clinic is working on getting my line and tpn underway.

I'll keep the blog update better as we go.


K

Well my last fatigue driven blog entry was pretty flaky and disjointed, so I figured I'd just give the technical specs of things in this one.

Thursday morning I go to CancerCare for round 2 of the chemo we are attempting to control my immune system with. (and by control I mostly mean 'kick it in the butt so it stops making me sick - but hoping not to kick it so hard that it lets other garbage make me sick - yay tightrope walking).

Basically things went down like this:

March 30th - spent my birthday at CancerCare discussing our options. Options ranged from 'really crappy and scary' to 'even crappier and scarier'. We decided on the blander choice of really crappy and scary - decided to try a 3 month trial of Mycophenelate (MMF - an oral chemotherapy drug - also called CellCept). The upsides - it was oral and could be done at home. The downsides - it was a 'broad immunosuppressant' and would likely wipe out all my immune system. It also was slow - it would be 3 months + before we knew if it was going to work or not.

Most of April ticked by waiting for an appt to see my cardiologist and start the Mycophenalate trial. I was acceptably functional - almost completely NPO (nothing by mouth - no food or drinks) and doing OK on the TPN. The steroids packed a literal 65lbs of fluid on me over the winter, and much of March and April were spent watching that extra weight fall off me - it continues to do so.

May came along and kicked my butt. I can't remember specific dates but I wound up with a broken central line in mid-April sometime - the seal at the tip of the line (the part where the cap 'screws on' to the line) had given way. the nurses cut the line, and repaired it with a new end and basically a bunch of crazy glue. 2 weeks later, I had bloodwork done at the hospital through that line (first time I used that lumen since the repair). 2pm the nurse drew the blood and flushed the line. 7pm I was at home, septic, with a temp of over 105. It was unreal. I spent several days inpatient, on massive antibiotics, the line had to be pulled, placed a PICC line (central line that goes into the upper arm rather than the chest) and just overall got good and freaked at how horribly sick the infection (which was considered 'mild' for the organism they grew - and it was treated very fast... I cannot imagine a 'non-mild' version of this infection... the doc explained that the specific bug I had carried with it a 48-52% mortality rate. Scared me strait.

Fuelled by the terrifying sepsis ordeal and how close I realized I was walking to the edge while depending on TPN daily was a good kick in the butt. I called my oncologist and said I no longer want to trial anything - I want the most agressive, most likely to work treatment they could offer.

Within a week I had a vas cath (IV in the jugular that is the size of an HB pencil - i kid you not) and was starting a 14 day course of plasmapheresis (the treatment where the blood runs through a centrifuge and all my plasma is removed and replaced with donor products... 5 times over 2 weeks). Last Thursday I started my first round of IV chemotherapy drugs. These are the big guns and we are all very hopeful we will find some improvement with them.

So far the chemo is making me profoundly tired (told to expect that) but not horribly 'sick' like I expected, so that is a bonus. I spent the weekend once again shuttling back and forth to the ER for IV antibiotics for what was quickly evolving into a kidney infection - but again we nipped it early and only needed a few days of Rocephin.

My opinion of my local ER has grown immensely - the docs I have seen there lately have been fantastic, and the nurses are beyond awesome.

I have 3 courses of chemo left, and then we wait.

We are all hopeful it will work.

If it doesn't, we have other options... bigger, scarier and more sickening types of chemo, or (last resort) plasmapheresis forever (this poses serious and unique access issues - a small central line in the chest or arm is fine long term - a vas cath is massive, and has always led to signs of infection for me (high sed rate/ESR, left shift, elevated white counts, etc etc) - while I've never gone septic from one they have also never been in long enough to do much long range damage. Having a vas cath of any kind in one's body long term is a serious serious risk.

But - it's an option... and one that beats the alternative at least.

So we have lots of options yet - lots of hope - and several weeks to wait and hope that this current trial works.

I will very quietly say that my appetite is dramatically improved - I am eating small meals all day long and while they do hurt/make me sick, it's manageable - which it hasn't been since September - so this is a huge 'upside' - but we're told to expect it to get worse again as the plasma wears off - then slowly improve once more as the chemo works....

so roller coaster time.

Sadly we are in the process of trying to find a loving home for our 2 wonderful cats. because of the type of chemo im on, and cats knack of carrying/contracting/spreading otherwise harmless germs that could kill or maim an immunosuppressed person very rapidly, we have been forced to make the choice to find them new homes. We're all very sad. the boys are crushed. I'm very upset about it. But - it needs to be done. Life will go on.

Just one last stupid thing we have to 'lose' in order to try and 'live'.

Upside - everyone is fairly 'well' at the moment.

Chemo is going well.

My family is fantastic.

I'm beat and recognize how lucky I am to have a bed, in a warm house, with my loved ones, waiting for me to sleep in. Focusing on that.

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

Sorry for the lack of updates, getting back into the home groove really eats up the time!

I was discharged in early January with a PICC line (a central line that starts in the arm and threads to the heart) after I lost my chest line to infection.

The PICC worked alright with a bit of trouble that required daily dressing changes, but the TPN end of things was going very well.

Unfortunately a week ago it became apparent that the skin around my PICC dressing was no longer just irritated, but very infected.

Last Sunday I was started on 2 IV antibiotics, requiring 3 ER trips daily at about 2 hours a time. the alternative was admission and we all preferred me not being admitted.

So we limped along on this schedule until Thursday when it was decided that the infection was not improving, and I was also clearly allergic to 2 of the last 'big gun' IV antibiotics left to work with (clyndamycin and gentamycin).

Thursday night saw me in the City at the ER, my PICC was pulled, I was given a monster dose of solumedrol, and put on high dose prednisone to try and wrestle the allergic reaction down.

In a long, stressful and rediculous way I found myself racing through a snowstorm on the highway on Friday morning to try and get to the hospital in time for a cancelled spot on the surgical list to get a tunneled central line put back in my chest. Without that surgery I was going to have to be readmitted for the week until they could get a permenant line in me again.

But - in a bizarre twist of luck and fate, by noon on Friday I had my line in my chest, and was home that night with no hospital admissions.

I was put on an antbiotic I'm NOT allergic to, and that along with round the clock benadryl and high dose prednisone and I'm finally on the med - the infection on my arm has cleared up and I am getting to feel a scootch more human. my new antibiotic require only 1 infusion a day too which is awesome.


Now for the roller coaster part (yea - that was only one aspect of our rediculous week)

Both the boys are sick. Brandon tonight spiked a high fever after finally going 2 days without one... it's a nasty bug that has been hanging around for a week now. It's wearing him down pretty hard.

As we limp along on the 55% income that is provided by EI (for which we are VERY grateful) not surprisingly things start breaking. Expensive things.

Bills come in because of mixups on the phone companies end (they have admitted this and are in the process of correcting it) that randomly take 1100$ out of our bank account.

On top of all this we are all waiting on egg shells to find out just when I will be getting my appointment at Mayo, and all the general discouragement that comes with facing the reality that I am very sick and there is not magical cure in site.

Up and Down.

Hopefully tommorrow will be more up.