April 2012 In Pictures

Day +34: My Busy Little Man

I seem to have developed a human shadow.

Sean's latest thing was to follow me around, all day long, barely letting me have even a minute to myself at any time of the day. In the kitchen, in the laundry, even in the toilet. The only time I didn't have a hip-high shadow was when Sean was having his nap. And it was exhausting trying to keep from stepping on my shadow, all the time.

One of Sean's favourite things to do at the moment was to snake around my legs while I was standing at the kitchen, either washing up dirty dishes and Sean's medication syringes for the umpteenth time, or preparing a meal for Sean, or preparing dinner for Jonathan and me. It made doing anything in the kitchen very hard when I had a little boy snaking around my legs. Much like a cat would do the "figure 8" around its owner's ankles, I had an 80cm tall toddler doing the same thing, butting his head into my groin or my butt every time he ducked between my legs.

Day +33: A New Couch!

We are the proud owners of a new, big, fat, lazy, slothy, comfy couch. It is delicious and yummy and screams "home" to us. And I love it!

Before you jump all over us and say "What bad parents - taking your child out furniture shopping when he should be in isolation", let me agree with you on that point. Yes, we took a calculated risk, and we did everything we could to mitigate the risks. Sean wore a mask the whole time, we went to the stores late in the afternoon, on a Sunday afternoon no less, where there were very few other customers, and he stayed in the stroller the whole time. We were at the shops for a very short period of time - the driving to and from the shops took three times as long as the shopping did.

Jonathan and I decided it was time to get a new couch, based on the fact that our couch (read: "my couch") was starting to give. The frame was sagging pretty badly at one end, and it was far too long for our living room. We really needed a couch that was no bigger than a 2.5 seater, and we certainly didn't need a chaise running off the side of the couch. We both wanted a fabric couch - neither of us ever really wanted a leather couch, and I really wanted the new couch to be much deeper than our current couch.

Day +32: Catching Up with Old Friends

Troy came for lunch today, and I'd almost forgotten how tall he was!

Our first visitor since we came home was my long time friend Troy. Troy and I met in 1999, during O Week at Macquarie University, when I was standing in the Soccer Club information marquee and he came along to sign up. We became fast friends, and even went on tour with the representative teams to intervarsity games a couple of times.

After uni, Troy moved away after joining the Air Force, but we kept in touch by phone and email. We saw each other whenever he was back in Sydney and had time to catch up, and it was always fun having a meal with Troy. When Troy left the Air Force and moved overseas to work, we lost touch for a short time, but through the wonders of Facebook, we connected again.

Day +31: A Lovely Day At Home

We had a lovely day at home.

That was it. Just a day at home for Mummy and Baby. Hanging, chilling out, playing.

With Jonathan back at work, today was the first full day I have had with Sean at home. We had no plans, nowhere we needed to be, just a whole day of being with each other, and a big timetable of feeding and drugs administration to fulfil.

It was nice just to hang out with Sean. Sure, we had plenty of that in hospital, and since we got home, we have had plenty of hanging with each other time. But a whole day of it, when Sean was being so cute and clever, that was a first in a long time.

Day +30: Clinic Days Drive Me Crazy!

I am NOT a morning person. And nothing, absolutely nothing, will make me cheerful and happy and friendly if I have to be up at 6am to get to appointments, only to be jerked around.

Our second Clinic appointment was scheduled for 8am this morning. On Tuesday, when we had our first Clinic day, we were in and out of there in 2 hours. Thinking the same would happen today, I very hopefully found a 2-hour parking spot out the front of the hospital instead of parking in the hospital to save one of our parking passes.

By the time we parked the car, my body had already been forced to be up for nearly two and a half hours. Sean woke at 5.30am and needed a few cuddles, so instead of pushing Jonathan out of bed, I got up and went to Sean. We sat in the brown chair and cuddled for half an hour, until Jonathan's alarm sounded at 6am. We both had breakfast, packed the food / medications bag and the nappy bag, got dressed and headed out the door just before 7am.

Sean and I arrived at Clinic at 7.45am, only to find the doors firmly closed! That will teach us to be early!

Day +29: ANZAC Day = First Full Day @ Home

They shall grow not old, as we that are left grow old:
Age shall not weary them, nor the years condemn.
At the going down of the sun and in the morning,
We will remember them.
Lest we forget.

Thank you, brave soldiers, for defending our country, for fighting the good fight, for your courage and valour.

Day +28: First Day of Our New Routine

Call me crazy, but I am counting all the new "firsts" we are experiencing post transplant.

For instance, today was the first time we visited the Clinic in Ward C2 North. We were told by Professor Marshall yesterday to attend Clinic at least twice a week, and the regularity would be dictated by how well Sean was recovering. This week, we had appointments for today and Thursday. The purpose of attending Clinic was to have Sean's blood drawn for various tests to ensure he was still on the right track as far as recovery was concerned. One of the important tests was to ensure Sean's Cyclosporin A levels were just right - this was the immunosuppressant medication - if it was too low, then Sean ran the risk of developing Graft-Versus-Host Disease, and if it was too high, then it would affect Sean's recovery.

Day +27: Bye Bye, Hospital!

At 2.30pm today, Sean was officially discharged from the hospital.

In total, we spent 34 days in hospital, 1 day shy of 5 weeks. We had anticipated a stay of somewhere between 8 to 10 weeks. 6 at best. To be out in under 5 weeks was beyond our wildest dreams.

Sean continues to recover well from the transplant. His body is slowly but surely growing all the things he needs to have a fully functioning immune system. We are still a long way from calling the transplant a complete success, but we are heading in the right direction. For the time being, Sean has to take a truckload of medication, to prevent certain diseases and to help his body continue to regenerate his immune system. For the time being, we have to be in isolation and be extra careful about the people who comes into contact with Sean, but at least, we are now doing all of this from home.

Day +26: A Wasted Day

What a complete waste of a day for us today.

After leaving the hospital for our overnight gate leave yesterday afternoon, we had to go back today to get some bloods taken for tests. We had to be at the hospital by 9am, so we dragged ourselves out of bed to make sure we arrived on time.

I was beyond exhausted last night, crashing out at around 10pm. It was so nice to be home. So nice to be in my bed. Under my sheets. Sleeping next to my husband.

For some of the night anyway.

Day +25: Gate Leave!

♥ ♥ ♥ WE'RE HOME!!! ♥ ♥ ♥

Day +24: I'm Not Ready! I'm Not Ready! I'm NOT Ready!!!

I'm not ready.
I'm not ready.
I'm not ready.
I'm not ready.
I'M NOT READY!!!
Can you hear me??? I'm not ready!!!
Why can't anyone hear me???
I'm not ready.
I'm not.
I really am not ready.

Day +23: Hitting All The Wrong Marks

At the risk of sounding like a TV doctor from, say, Grey's Anatomy, Sean was a mixed bag of medical jargon today.

Sean was hypotensive. Then he was hypertensive. Then he was tachycardic. His respiratory rate was up. And for a short time, he was also febrile. Nifedipine was our friend today.

We had planned to go home tonight for an overnight stay, and have dinner with my parents before going home, but those plans were put on a tentative hold when Sean's temperature in the morning was 37.6°C.

At rounds this morning, it was noted that Sean's platelets count was very low, and he would need a platelets transfusion today. Sean had had platelets transfusions before, and never had any problems. Not today. Today, Sean had a small reaction to the transfusion, at first returning an abnormally low blood pressure, and then becoming tachycardic, and later, his blood pressure went the other way and he became hypertensive.

Day +22: Our Big Day Out

Guess who had a day out today?
Go on, guess.
Any ideas?
Ready to give up?
OK, I'll give you a hint.
Three people had a day out today. Their names begin with J, G and S.
Yay! Congratulations! You guessed correctly! We ALL had a day out today.
Together.
At the same time.
Away from the hospital!

Day +21: 4 Weeks Ago...

4 weeks ago, we entered the doors of Ward C2 West, nervous and anxious about the journey ahead. As we settled into the room that housed Bed 17, a million thoughts rushed through our heads, trying to reconcile with the reams of information we had been given by our medical team.

4 weeks ago, we were facing an unknown number of weeks in hospital. We were staring down the barrel of chemotherapy for Sean that would prepare his little body for the cord blood transplant. I was an emotional wreck, crying all the time, because I couldn't stop crying. Jonathan was the glue holding us together, but he too felt scared and lost.

4 weeks ago, the nurses hooked Sean up to all the machines and pumps needed to deliver medicines and other vital fluids to Sean. Sean would spend these 4 weeks tethered to a single pole, and later to a giant heavy pole that housed 7 pumps. It seemed like we would never leave hospital.

Today, Professor Marshall all but threw us out.

Day +20: Food, Glorious Food!

Sean started eating again today. Yay!

The whiteboard recording Sean's food and formula intake had been blank for 15 days. We thought it would be a while longer before Sean would accept food again, but today, he surprised us and ate.

Sean ate apple purée for breakfast. Then he had some chicken and sweet corn purée for lunch. Then he had some beef and pumpkin and potato purée for dinner. From having no solids at all for 15 days, to having 3 meals - it was simply amazing.

Day +19: It's All Becoming A Bit Of A Blur

Oh what a night,
April 15 in 2-0-1-2,
what a horrid night for us two,
Jeepers creepers; what a night.

Oh what a night,
Please don't have another night the same!
My sanity is feeling very lame.
Jeepers creepers; what a night!*

Day +18: Restless In Randwick

Our worst day so far. And so different from yesterday too.

All day long, Sean needed someone to hold him. All day long, Sean cried if we put him down in the cot, even for a second. All day long, Sean was restless and irritable.

We weren't sure why Sean was acting the way he was. Maybe it was the switch of all medications from IV to oral (or down the NG tube). Maybe it was switching off the morphine. Maybe it was just one of those days. Any way you looked at it, Sean was unhappy. Very, very unhappy.

Day +17: Light & Hope on Black Friday

FREEDOM!!!

For the first time in 24 days, Sean enjoyed the freedom of being able to run around on the ground and climb on and off couches without being attached to multitudes of machines and pumps.

For one hour today, we saw our little boy explore every corner of the "teenagers' retreat room", which was set aside for our exclusive use. We saw Sean walk around and around and around, back and forth between Jonathan and me, with the biggest smile on his face. We saw our little man climb on and off the big leather couch in the room, and run from one end of the couch to the other. Back and forth, up and down, back and forth, and up and down again. All the while, Sean's little face was split by the biggest smile in the world.

Day +16: Vaseline, Vomiting & Very Loud Nurses

I don't think I'd like to see another day like today.

The day felt very, very messy. We started off with one nurse, Liezle, who didn't seem to know what she was doing. She then swapped with curly haired English Jo, who was being shadowed by a new staff member Danielle. A couple of things happened this morning after rounds, and trying to get Dr Trahair or any of his team to come and see us proved completely futile. Things that were suppose to happen at certain times today just didn't happen. The nurses took forever to answer any of our calls for a period of about 3 hours - all of them seemed frazzled and none of them seemed to want to be here. And we found out today that getting a tube of Vaseline delivered to our room was harder than squeezing blood out of a stone.

Day +15: Who Knew Lunch Could Be So Exciting?

A much better day today, filled with good food, great friends and plenty of excitement. Who knew an innocent trip out to lunch with friends could evoke so much excitement?!

Our gorgeous London-based friends Niall and Loey are currently on holidays in Sydney. They let us know a few weeks ago that they would be here and wanted to catch up with us. In light of Sean's transplant, they wanted to take us out somewhere in Randwick, and we arranged to have them meet us at the hospital to see Sean.

We'd arranged with our ward granny Jenny to come and look after Sean while we were out to lunch, and sure enough, Jenny arrived in our room at 11am, ready and willing to help. Sean was growing tired by this point, and with Niall and Loey on the ground floor waiting to be met, Jonathan tucked Sean in to bed, snug as a bug in a rug, and Sean drifted off to sleep.

Day +14: Momma's Feeling Fragile

Today marks 3 weeks since we were first admitted to hospital.
3 long weeks.
21 very long days.
Away from home.
Away from our bed.

The time away from home and all the comforts that come with home was getting to me, and today, I felt fragile.
Any little thing upset me.
Everything little thing upset me.

Day +13: No News Is Good News

Easter Monday in hospital = significantly reduced activity, for everyone involved.

We had our first real consult with Dr Trahair this morning. Since giving us the "big talk" and then the revised talk, we had seen Dr Trahair twice from our admission to now, and both visits were brief and fleeting.

Dr Trahair came to see us with a reduced team of people, as today was a public holiday and the main team was still on leave. Dr Trahair was pleased with Sean's test results, and noted that the neutrophils and white cell count were both on the rise, which was great news. The team was quietly confident that the transplant would be deemed a success. The word "quietly" was well emphasised - there was still such a long way to go, so while the team was pleased with the progress so far, it was still very much a game of "wait and see".

Day +12: Happy Easter!

Happy Easter to you!

Even though we're in hospital, the Easter Bunny still found us. And boy, did the Easter Bunny find us!

We have been inundated with chocolate, in all shapes and sizes. There are the regular egg shaped ones, in small, medium and large. There are solid eggs, hollow eggs, eggs filled with chocolate goodies, and Cadbury Creme Eggs. And then there are the bunnies. Small, medium and large bunnies. Not just any bunnies. There's an itty bitty bunny. And a large Cadbury bunny. But best of all, there's a Lindt Chocolate Bunny, and a very special Ferrero Rocher Bunny. How are we going to get through all this chocolate???*

Day +11: Gloria's Big Day Out

My big day out of the hospital today, and I loved it.

Since being admitted, I had ventured outside the hospital half a dozen times. It wasn't that I didn't want to leave Sean's bedside - it was just that I was too comfortable / tired / lazy to go out more often. I do try and head out every second day, if not every day, and today ended up being a day when I spent a few hours outside of the hospital.

The Henrys came to visit us today. Kirsty and I had planned the visit, to work around both Sean and Lachlan's nap time. Both boys are now sleeping around the midday mark, and both were much more playful in the mornings than in the afternoons, so we planned a morning visit. We arranged for Kirsty to call us when they got to the Admissions Desk, and I would go and collect them and bring them up to the ward.

Lachlan is cuter every time we see him. What a gorgeous little man! It was great to see such a fun little man, and lovely to see Kirsty and David as well. We missed David's surprise 40th birthday party on 30 March because at Day +3, I didn't want to leave Sean's side. And Kirsty completely understood why I couldn't attend. It was nice to still be invited, even if we could only be there in spirit!

Day +10: Double Figures

We're one-tenth of the way to the magic number.

When I wrote on the white board this morning, I hadn't expected the number "10" would have such a huge impact on me. It'd been 10 days since the cord blood transplant, and I was a bit disbelieving at how quickly the last 10 days have flown.

10 days since the most precious 30mL of cord blood containing little miracle stem cells were injected into our little boy's body. 10 days since those little stem cells had been running freely inside Sean's body and trying to find all the right places to engraft and grow. 10 days of Sean gradually becoming sicker, and losing his appetite, and getting more drugs.

The magic number is 100. 100 days post transplant. 10 days down, 90 to go.

Day +9: The Downward Slide To "Sick"

The "sick" part of this whole transplant programme was finally rearing its ugly head.

Sean needed a lot more comforting today than yesterday, and was sleeping a lot more today as well. While Sean was still happy to play with us and with all his toys, it was clear that he was feeling the aches and pains a bit more today than yesterday. He needed more comforting, and spent a large part of the day cuddling up to us. If we put him down when he wasn't ready to finish the cuddle, Sean would scream and cry.

The doctors were still impressed with how Sean was looking and acting, but they were giving us that "knowing" look as Sean continued to slip down this slippery dip towards the "sick" part of the recovery process. We kept receiving reassurances that it was perfectly normal for Sean to get sicker before he got better, and his body needed to start producing white cells before he would show signs of improvement. In the meantime, we could expect more days ahead where Sean will just want to be held all day long.

Day +8: Easter Bunny + Bondi Lifeguards = Lots of Chocolates!

Lights. Camera. Action!

Today turned out to be one of the busiest days we'd had to date. Even as I'm writing this, I'm amazed at how we fit everything in to the last 16 hours.

Easter was upon us, and judging by the flurry of activity on the ward today, it was going to be hectic. There were doctors a plenty, specialists and consultants and other medical personnel, and they were all trying to see their patients and get on with more work. Our team came in and told us how great Sean was doing, and that he was tracking along just as they had predicted and expected. They kept telling us this same story every day, and every day, we were thankful and happy to hear it.

Day +7: The Good Drugs Are Coming!

We knew it would happen, sooner or later. In Sean's case, it was happening a little bit later than expected.

The aches and pains were starting to rear their ugly little heads, and Sean was feeling more and more uncomfortable as the days passed. Sean wasn't completely happy when he woke this morning, and as the day wore on, he became more and more grizzly.

Every time he got upset, it took us around 10 minutes to calm him down again. Any sooner, and he whipped himself up into a frenzy again. Holding him and patting his back and bottom were the only things that soothed his frazzled nerves.

The usually outgoing and sociable little boy that the nurses knew and loved decided not to come out and play today. Emma, our day nurse, was teaching a new staff member Danielle today, and had obviously told Danielle what a lovely little boy Sean was, because when Danielle walked in the room, I could see on her face that she was looking forward to meeting a fun little boy.

Someone just forgot to tell Sean that we want a fun little boy today. Instead, he gave us grouchy and grumpy.

Day +6: The Difference Between Red & White

Today's post is brought to you by the colours red and white.

For most of us, we are immediately able to tell which colour is which. This is red, and this is white.

Unfortunately, even something as simple as telling the difference between red and white can be missed by some, especially when the person is tired and preoccupied.

During Sean's lines change late yesterday afternoon, Simone our day nurse somehow managed to connect the lines meant for Sean's white lumen to the red lumen, and vice versa. For those who have no idea what lumens are, these are the two lines that fork out of the main insertion in Sean's chest, as shown in the picture on this entry. One lumen has a white connector on the end, and the other has a red one. As I understand it, the main purpose of the white lumen is to deliver medications to Sean, including all the chemotherapy drugs and all the medicines to help manage the pain and assist Sean in his recovery. The purpose of the red lumen is for the doctors and nurses to draw blood for various tests, and when required, to deliver blood transfusions.

Day +5: Thankful, Humbled & Speechless

I cry a lot these days. Today was no exception.

Usually, they are tears of sadness. Gone are the days of tears of disbelief, bewilderment, and confusion. The tears that fall are mainly tears of shattered dreams, anger, frustration, and sorrow. Sometimes, they are tears of fatigue. But today, there were tears of gratitude too.

I had a meltdown around mid morning, resulting in tears of frustration spilling over the most frivolous and trivial thing. I use an app on my iPhone called Instagram to edit photos and upload them to Facebook and Twitter to share with family and friends. Since Facebook decided that, come what may, everyone's profile pages would be switched from one layout to a new one called Timeline, I wanted to make sure that my new profile page appeared exactly how I wanted. It took me ages to get all the settings just so after the last layout change, and it was taking me ages to do the same to this new layout.