What the * just happened?

In my last post, already 3 weeks ago, we were all coming along fine, DD1 was looking fine, and Purl and I were riding high (ok still in the parking lot, but coming along just fine!).

Then wham, the world just tilted out from under our feet. DD1's little virus that had kicked her back a wee notch went from bad to worse and turned into a pneumonia like bad-boy with attitude, and the next thing we knew she was in major trouble. A 3a.m. transfer from the heamatology ward to the ICU shook us badly and I spent the first week watching as my baby struggled to breathe without being intibated. The only way to explain it was as if she was running, flat out, for about 4 days straight. Normal breathing is about 15-20 breaths per minute - she was breathing at over 50 breaths per minute at some points, like running a marathon for days. The body simply cannot do this for very long, and and at some point usually gives up and emergancy intibation is required.

This is not an experience any parent should go through. I spent several 24 hour sleepless days at her bedside, preparing for whatever might happen. As it was, everytime the doctors thought they might have intibate, I would go and talk to her, gently caressing her like when she was a fussy infant, and slowly she would come back from the edge bringing her heart rate down just enough and her breathing back enough from the danger zone, and over 5 days she was able to avoid the worst interventions. Never under estimate the powerful un-spoken connections between a mother and child.

After a week of ICU she came back to the ward, but was unable to walk or breathe without oxygen. It has taken about 7 days for her to start walking and only yesterday did she start breathing without her oxygen for a few hours at a time. Everyday we have been bundling her up and getting outside for some fresh air which has done her a world of good and today she will get a pass for a family event which we are all so excited about.

So what happend? Was it a virus? Well maybe yes, maybe no - nothing ever came back conclusive from the tests in ICU. However, it was the "it-looks-like-she's-having-a-heart-attack" and another 3 a.m. CT scan last Thursday night and subsequent diagnosis last Friday that tilted our universe on its arse - as if the Hodgkin's wasn't enough, DD1 has a new disease called Pulmonary Hypertension. This is devastating news and it has taken us a week to just get used to the idea. I never in the the last 2 years of her Hodgkin's battle thought she wouldn't make it, but last week, for the first time ever, I really wasn't sure, and I, indeed all of us, was very, very scared.

Our initial research scared the crap out of us, I can tell you, as up until a mere 10 years ago there was no cure and a life expentancy of only 2 years. Now there is still no cure, but better long term management of the disease has changed the forecast and there are more and more reports of people living productive and longer lives with the newer medications avialable today. Still, it is very telling that there is no discussion about her long term prognosis as yet.

What does it mean for DD1's future? That remains to be determined. Only time will tell. First we will watch to see how well she recovers from this incident, as she is very doing well by all standards, better than expected - does't she always! and is expected to come home with support this week. And she will begin one of the newest and most promising medications on the market today, Tracleer,  one of the latest wonder drugs to help people with this disease. She and I have spent many long afternoons this past week in the hospital park, DD1 all bundled up in her wheelchair, talking about how this will change her life, even more so than the Hodgkin's battle did, and how it will change all of us. What will her life be like, what will she do, how will she be. All questions I cannot, for the first time in 30 years of being a parent, come up with an answer for.

Have I done some knitting throughout this? Yes, when I could get my head to work right - a crocheted cotton hat for DD1, a second knitted one on its way, and I'm on the second of a pair of socks for myself. And in between, Purl and I continue our lessons with our most patient instructor Peter, who says I will be out and about for a nice back country ride very soon. This week we are practicing tight turns from a stop and controlled start. Apparently I have issues turning left, sigh.....

Knit on.....

That's a whole lotta horsepower, baby!

Last weekend was motorcycle class - 2 nine hour days of nothing but motorcycling - pushing motorcycles, lifting motorcycles, riding motorcycles, and lots of sitting around on motorcycles! I can tell you I was never so tired as I was by Sunday evening! Motorcycle boot camp is more like it! Thank goodness I have been hitting the gym a few times a weeks ince March and dropped 30 pounds since last year - I would have never made it otherwise - it was without a doubt the hardest thing I have done physically in many, many years!.

By Saturday night I was fit to be tied, almost in tears, and really thought I had bitten off more than I could chew! I was struggling to master that damn clutch, having never in my life used one, and couldn't for love nor money stop stalling the bike whenever Ian, my instructor, spoke to me! By the end of the day we were both very frustrated with my lack of progress and my definite last in class status.

So that evening I made some calls to my biker friends and received a myriad of ideas, including two which seemd to make the most difference - one, change back from my full face helmet to my half helmet so I could actually hear the little 250cc engine (since hearing is the next best thing to feeling the clutch, and I didn't have a freaking clue what I was suposed to be feeling!), and most importantly two, stop worrying about passing the class and have fun! Remember fun?? - this class was supposed to be for fun!!! Yup -  I had forgotten all about fun!!

With my attitude re-adjusted, Sunday was much better, although I still struggled with the gears, knowing nothing about what I was doing, while others whizzed by me! On a plus note, I had no trouble with balance, counter-steering, emergancy stopping, and cornering - and I was having some fun, having decided that if i was wasn't ready for the test, so be it!!

At lunch Ian and I had a little pow-pow and said he thought I might as well try the test and see what I could do. Imagine both our surprise when I passed! Poor Ian, he checked his numbers twice just in case he was mistaken - secretly I think he was hoping he had made a mistake! I had to really re-assure him I would not hit the streets on my new Sportster, and would stick to parking lots for a while, until I could control the throttle and change gears without difficulty. He did not seem very re-assured!

Fast forward a week later. I have been out twice this week on Purl - the weather not co-operating one bit - and have really begun to catch on to this shifting thing. Not to mention, I have since discovered that no one in class told me to close the choke once the engine was warmed up! No wonder 1st gear was so choppy!

The 1200cc engine of Purl is much easier to hear when it is time to change gears, and although throttle control needs some more work (it is big time sensitive!), I have been zipping around the parking lots doing figure eights and changing up and back through 4th gear (I have 5 speeds but the parking lot is only so big) with much more ease under the expert and very, very patient tutelage of my coach and dear friend Peter - this being one of those thing husbands and wives should never attempt to teach each other unless you want instant divorce! Much like wall-papering, if you catch my drift!

And so I no longer eye Purl in trepidation, but rather speak to her gently every day as I walk by on my way to and from work - I am learning to be the boss of my bike and she is becoming my friend, and we will (eventually) be allowed to play in traffic together with the others!

Knit on......

ps. 7 weeks post stem cell tranplant and DD1 is doing fab - she has picked up a wee virus which has stolen some of her zip, but overall everyone is quite pleased with her progress.