Eggs Three Ways
Readmission #2: Jarrah's Dad with his 'funny duck mask'.
Easter Eggs
In the week leading up to Easter, there was a point at which Nicole and I were discussing how we might organise an Easter egg hunt for Jarrah within the confines of my hospital room. I had been readmitted to the ward on the weekend prior to Easter and since my temperature was still occasionally creeping above 38°C during the early part of that week, there were still real doubts as to whether I’d be home for the weekend.
This time of the year holds many happy memories for our family. For the past six years in the row (including Jarrah for the last 3 years) we’ve spent our Easter camping beside the beautiful Wakool or Murray Rivers, fishing and swimming in the warm freshwater, preparing Easter egg hunts among the old red gums, followed by a cold beer or two next to the campfire overlooking another brilliant autumn sunset. Because of the transplant, we knew this year would have to be a compromise and the Easter Bunny would need to be redirected to our home in Melbourne. But the concept of having a family Easter within the transplant ward was something we hadn’t really planned on and the thought of Jarrah searching for her eggs next to oxygen taps and blood pressure monitors did sadden us to some degree. But I only needed to take a walk around the rest of the ward and observe the other patients who were clearly no chance of making it home for Easter, or in many cases, may never make it home at all. My heart is still beating strong and I kept reminding myself of the simple gift of being alive and (semi-) healthy for my family this Easter is an achievement, even if the surrounds might appear imperfect.
Bringing in the heavies on Good Friday: My dad and dad-in-law carry my luggage to the car as I exit the hospital for the second (and hopefully final) time.
Yet I’m very happy to report that my temperature behaved itself in the latter half of the week and I was free to go home on Good Friday! We could now happily plan an Easter for Jarrah in our own home! We maintained our tradition of painting hard boiled eggs on the Saturday night, and then Nicole and I watched with pride as our little girl race out of her room in her dressing gown, screaming with excitement after finding Easter Bunny’s footprints on the carpet and floorboards, and then racing around with a big grin on her face to collect chocolate eggs in her small wire basket.
It’s brilliant to be home. The river can wait another year.
Easter Bunny!!!
Poached Eggs
My temperature continued to remain stable in the week following Easter and for the first time since early March, I had spent more than a continuous week at home. Admittedly, my previous two readmissions to the ward had shaken my confidence in remaining at home long-term, and both Nicole and I spent the first couple of days ruminating in the back of our minds that it would only a matter of time before I would be readmitted to the ward for a third time. However, as each day passed and as each of my temperature readings came back within the normal range, our confidence steadily grew. Soon enough, it almost felt normal for me to be at home again!
Still, true normality at home will not return until my immunity has been fully reestablished. My blood cell counts remain well below a normal range and I’m still receiving large quantities of immunosuppressants to help suppress graft-versus-host disease. Accordingly, I always need to mindful of my increased risk of infection while at home and take the necessary precautions to minimise these risks. For example, crowds and sick people need to be avoided to the best of my ability, I need to keep my distance from building and construction sites while I’m outdoors (due to risk of resuspended pathogens in the air), and I need to adopt the same dietary restrictions as someone who is pregnant (e.g. no soft cheeses, deli meats, raw or undercooked meats, packaged salads, etc). Respecting my body while it’s in recovery is also important - resting when I feel tired and limiting my exercise to a 10-15 minute walk each day.
Of course, the safest approach to preventing infection (i.e. locking myself inside and wrapping myself in cotton wool) would be the same approach that limits my daily freedoms the most. Still, maintaining a healthy level of paranoia is also an important safeguard during a particularly vulnerable period of my life. Therefore, my newest challenge while at home has been to find an agreeable balance between protecting myself and my recovery, while still maintaining a degree of contact with the outside world. It can be a tricky balance to find, particularly without the benefit of hindsight.
As I sat down for another home (i.e. Nicole)-cooked meal with my family on a Saturday night, more than a week after being released from hospital, confidence in my own health and my ability to remain at home had reached a peak. My mind was at ease and I could relax without inhibition and really enjoy this time with my family. Buoyed by this new level of self-assurance, it was only natural that I would wish to somewhat loosen the boundaries of protectionism. “How about we go into town for breakfast tomorrow morning?” I asked Nicole, already knowing what her answer would be.
And so the next morning, my two girls and me took another step towards normality and visited one of our favourite local cafés. Precautions were still taken – I was on a sharp lookout for people who were sniffling, coughing or had any other sign of general ill health, just in case I would need to keep my distance. And alas, my ‘pregnancy diet’ would have to mean that my poached eggs would have to be overcooked with no runny yolk. Heartbreaking, I know. However, this simple, greasy meal of bacon, hash browns and poached eggs with my family on a crowded Sunday morning felt very symbolic of my evolving recovery. Breakfast on a sunny Sunday had never felt so liberating.
Uncle Eggs
I’d like to take a quick opportunity in this post to thank our good friends Ben (a.k.a. Jarrah’s Uncle Eggs – nickname inspired by the wonderful dish, Eggs Benedict) and Beth (Jarrah’s Aunty Beff). Beff and Eggs gave birth to their first child late last year and have spent the last six months facing the challenging task of adapting to life with a newborn. Yet somehow these wonderful, selfless people have still been able to give so much of their time, love and support our family. We can’t thank you two enough!
Beth and Eggs are also a fantastically creative couple and as part of a wedding gift to Nicole and I, Uncle Eggs offered to create us an original oil painting of Jarrah in his own distinctive ‘Funbeard Studios’ style. The finished product arrived home while I was in hospital and I was blown away when Nicole first showed me the photo. It is a true privilege to have been given such a rare and personal gift, a gift that will be on display well beyond the time when Jarrah has grown into an adult and moved out of home. You’re an amazing talent Ben – thank you greatly!
You can see more of Ben’s brilliant work at http://funbeard.blogspot.com.au and https://web.facebook.com/funbeardstudios/?_rdc=1&_rdr
Quick Health Update
Today represents day 50 post-transplant and I have now spent a full two weeks at home without any significant complications. My blood counts continue to climb steadily and my liver, kidney, lung, GI tract all appear to be functioning normally. A small amount of graft-versus-host disease (GVHD) has developed on the skin of my belly and arms, but it is mild and is currently being controlled with low dose steroids. It is an encouraging sign to have a mild form of GVHD, since it can be evidence that the donor cells are doing their job and also clearing the remaining cancer cells. Essentially, I’ve been very lucky with my recovery to date and everything is going as well as it can at this point in time. Yet the threat of infection and more severe forms of GVHD are still very real during this early period post-transplant, so we can’t get ahead of ourselves just yet.