Half the Energy, Twice the Spunk

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