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.

March 2012 In Pictures

Day +4: The End of March? Seriously?

The last day of March. Seriously? Where has the year gone?

This year has both dragged on and flown by for us. There's been barely any time between Sean's diagnosis to today; less than 2 months ago, we were given the life changing news that Sean had Severe Combined Immunodeficiency. And here we are, today, Day +4, being 4 days after lifesaving treatment to cure Sean of the disease.

My head spins every day with more and more information about the disease, the cure and all the measures our medical team is taking to help Sean recover from the transplant. And considering how much information we had already been given, it is amazing that I am still able to cram in all the additional bits and pieces of information that we are given each day.

Day +3: Hello, Morphine!

Sean got his first taste of morphine today. And he liked it.

At least it seemed to make him a bit less grizzly and a bit happier with everything that was going on around him.

After 2 days of being nauseated and some bouts of vomiting, the medical team decided to give Sean some morphine to help with the pain. It was only a very small amount trickling in the background, but it was just enough to take the edge off all the aches and pains Sean might have been suffering but was not able to vocalise to us.

The medical team also prescribed more anti-nausea medications to help combat the vomiting. Sean was feeling so nauseated that he wasn't even able to tolerate getting some of his oral medications. So the medical team decided that as much as possible, the oral medications would be switched to being administered intravenously, and where they must be taken orally and when Sean wasn't up to swallowing the medications any more, then those medications would be pushed down his nasogastric tube.

With Sean's interest in food showing signs of decline, and certainly with his intake of food on the slide, the medical team decided to increase the tube feed of PediaSure from 10 hours at 40mL per hour, to 16 hours at 40mL per hour. This meant Sean would be hooked up to the milk pump from 5pm to 8am every day. Great. One more line to worry about getting tangled with all the others.

Day +2: Nausea, Nausea, Go Away

Nausea, nausea, go away. Come again ... well, actually, please don't. Please go away. And stay away.

The nausea had kicked in for Sean, and our poor little man was finding it difficult to keep his food down. The medical team was expecting Sean to have stopped eating, or at least refusing food by now. Sean, on the other hand, was defying the norm. He was still happy to eat, and was taking almost the same amount of food as he had always eaten. The keeping the food inside his stomach was proving to be a bit harder than it sounded.

About 20 minutes after eating a good sized breakfast, the breakfast revisited the outside world again. Poor little man - one minute he was happily playing in the cot, the next he was covered in used breakfast. And it went everywhere. Jonathan tried to contain the mess as best as he could, but ended up spreading it all over the bed, and smearing some on his shirt. Sean was understandably upset, and it took a while to calm him down.

The upset stomach was quite energy sapping, and Sean fell asleep a lot earlier than expected, and stayed asleep for a bit longer than usual. I was out of the room for a few minutes to have a shower, and by the time I returned, Sean was lying down and fast asleep. Jonathan said Sean simply laid down and went to sleep by himself. What a traumatic start to the day.

Day +1: Learning Another New Word - "Hypertensive"

Aaahhh, sleep. How sweet you are. How I've missed you.

Both Sean and I got a great night's sleep last night, so when Sean woke at 5am feeling a bit unhappy, I didn't mind jumping out of bed to tend to him.

The overnight feeds have recommenced. and the milk in Sean's belly made him very grumpy first thing in the morning. Sean woke with a scream and needed quite a few cuddles to calm down. Thankfully, it only took 15 minutes to calm him down, and he returned to his cot and slept for another 90 minutes before waking again.

Last night, Jonathan mentioned that he had a few errands to run in the morning, one of which was to go to the Post Office to collect a parcel. As the Post Office did not open until 9am, he would be late getting to the hospital. After the momentous milestone that was yesterday, Jonathan deserved a little bit of a sleep in. As a result, Jonathan didn't arrive at the hospital until 10am. By that time, the medical team had been to visit and checked Sean from head to toe. Dr O'Brien was happy with Sean's progress, and only stayed for a short time before they all filed out again.

Heidi, the dietitian replacing Jennifer, stayed to have a chat with me about Sean's diet. With Sean's appetite expected to wane any day now, Heidi wanted to reassure me that if Sean was to start refusing food, or his body started rejecting food, this was all in line with the chemotherapy and transplant process. If Sean stopped eating, or he wasn't able to retain the food, there were measures that the medical team can take to ensure Sean was still getting the necessary nutrients to sustain his body weight during the recovery period.

Day 0: Sean, Meet Stem Cells; Stem Cells, Meet Sean!

30 mL. 10 minutes. And then it was done.

All those weeks of anticipation, research, sleepless nights, endless worrying all led to a moment today, this moment at 11.15am, when the cord blood was delivered to our room in a blue esky, waiting to be transplanted in our little man.

Our small room felt even smaller when everyone piled into the room and shut the door. Sean had woken from a nap half an hour earlier, and was happy to play in his cot while everyone fussed around him. There were 5 adults and a baby in the room in total, with another adult standing outside looking in. Laura, our clinical nurse consultant, had been feeling unwell for a few days leading up to the transplant and didn't want to run the risk of passing on any bugs to Sean, so she stayed outside the room and watched and listened through the intercom.

In the room with us were Kate, our lovely nurse for the day, Anne (the nurse consultant who coordinated the worldwide search for the compatible cord blood for Sean) and Carol, who was performing the actual transplant. Anne was there to guide Carol through the procedure, as this was a teaching hospital after all and Carol was being trained to do the cord blood transplant.

With the cord blood delivered and sitting in a green tray, the nurses busied themselves with the prep work to get everything ready. Carol drained the cord blood into a large syringe, and prepared another syringe to rinse out the pouch and get every last precious stem cell out for Sean. Then there was another syringe to flush everything through thoroughly. Kate distracted Sean and played with him while Carol got everything ready.

I took many photos before Anne took the camera off me and told me I must be present in the photos for this very important milestone. Anne continued to take photos throughout the procedure, before handing me the camera towards the end.

Under the very watchful eyes of Anne, Carol connected the syringe holding the cord blood, and at precisely 11.26am, Carol pushed down on the syringe and the cord blood flowed into Sean.

Day -1: Rest Day, but the Heart Missed the Memo!

Today was suppose to a Rest Day for Sean, but someone forgot to tell Sean's heart.

For no reason, Sean became tachycardic early in the afternoon, which sent the doctors and nurses into a bit of a flurry. Nothing major was scheduled to happen today, but during a routine set of obs, our nurse Tina noticed Sean's heart rate was a bit elevated, and she thought she saw Sean having some difficulty breathing as well. Tina took Sean's temperature, but that seemed normal, so she continued with the regular obs, waiting to see if Sean's condition would change over the course of the afternoon.

Outwardly, there was nothing markedly different about Sean. He was still active and playful and happy, and he looked and seemed completely fine. It was only when he was hooked up to the heart rate monitor that Tina noticed anything different / not quite right about Sean. To be on the safe side, Tina placed a call to the transplant team.

Day -2: Last Day of Chemo!

Last day of chemotherapy, and Sean is going from strength to strength!

We can hardly believe how well Sean has soldiered through the chemotherapy. I was fully prepared for him to be sick and clingy and miserable by now, but Sean continues to amaze us every day. Sean's strength and bravery and resilience knows no bounds, and even after 4 full days of chemo, he is still the happiest, cheekiest, funniest, full of life little boy that ever was.

We were definitely getting use to the shorn look, and every single person who saw him all agreed that Sean was cuter without the hair! Yesterday's hair cut was not 100% complete, so Jonathan took the clippers to Sean's head again today to even everything out. My little man's round little head was now all spiky and and shiny!

Day -3: Hair Today, Gone Tomorrow

Bye bye, hair! We'll see you again some day soon!

We made the monumental decision to shave Sean's hair off today. One of the side effects of chemotherapy is alopecia (hair loss), and even though we'd been warned about this, no one could really tell us exactly when it was likely to happen. It was mentioned that hair loss was likely to happen Sean would be at his sickest, and the hair would come out in clumps, and not all at once. Some of the nurses mentioned that it may be easier for us if we were to cut his hair now, so that when the hair did start to fall out, it will be less of a mess to deal with then.

It felt important that we chose to shave Sean's head as opposed to seeing the hair fall out at some stage. So many things seem out of our control at the moment, so having the choice to cut Sean's hair was imperative. We sent our lovely nurse Simone to get the clippers, and set up a temporary barber shop in Club C2W17.

Day -4: You Can't Stop The Music

We think we have a musical boy on our hands.

Sean had the pleasure of meeting a very lovely music therapist called Kym today, and was totally delighted with her singing and guitar playing abilities. We watched as Sean looked at the guitar with some reservation to begin with, but as Kym played "Twinkle Twinkle", Sean lit up and really responded. He started playing with the drum, and then picked up the drum stick and started beating it against the drum. There were bells and a tambourine as well, and Sean happily played along to the beat of the music.

Over the past 2 weeks, Sean had become much more interested in music. For ages, when Sean played with his toys that played music, he would bounce up and down and giggle. Before long, he started swaying to the music, like he was dancing. Then one day, 2 weeks ago, out of the blue, Sean walked up to me and started making "star burst" motions with his hands (opening and closing his hands). Exactly like the actions to "Twinkle Twinkle Little Star". I was bemused, and Sean kept making the "star burst" actions. So I started singing "Twinkle Twinkle", and sure enough, Sean beamed his gorgeous smile, twinkled with his hands, and swayed to my singing.

Day -5: Day of the Fluids

Our little man is turning into a water balloon!

With so much fluid is going into him (to keep him hydrated through the chemotherapy, as well as to keep the drugs flushing through Sean's system, on top of which Sean was receiving approximately 400mL of PediaSure overnight), Sean was becoming a little bit bloated. And what goes in must come out, and this morning, Sean found himself lying in a very big wet patch. Even with the constant nappy changes, nothing was able to hold the amount of fluids coming out of the little man.

When the medical team came around to see us, Professor Marshall decided that Sean was being overloaded with fluids, and for the time being, cut the overnight feeds from the schedule. Sean was eating and drinking well enough on his own, and the medical team was happy to cut the overnight feed for now. Professor Marshall noted that Sean's face was looking a bit puffy, and told us that it was normal for people going through chemotherapy to be bloated. However, it was important to not put too much fluids into Sean, as this may cause damage to his kidneys, hence cutting the overnight feeds for a few days.

Day -6: A Little Bit Febrile

fe·brile /ˈfebrīl/

Adjective:
1. Having or showing the symptoms of a fever.
2. Having or showing a great deal of nervous excitement or energy.

I think we were all a bit febrile today.