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.

Day -7: And So It Begins

And so it begins.

Sean and I left our home this morning for the last time in a while, and headed to the Sydney Children's Hospital to start the arduous road to what we hope will be a cure for the Severe Combined Immunodeficiency.

We still had so much to do this morning when we woke up - we still had to finish packing, and I had wanted to alter the length of 2 pairs of pants I was hoping to take to the hospital to wear. Jonathan had set up the sewing machine for me last night, but we ended up spending the night watching TV and enjoying each other's company. After feeding Sean his breakfast this morning, I got on to altering the pants. It took us 20 minutes to find all the bits and pieces for the sewing machine that were still in the linen press, but once I got going, it only took 15 minutes to get the job done.

The last of our big list of things were packed and we ended up with a large suitcase, a smaller suitcase, a bag full of Sean's toys and a bag full of food, not to mention some last minute items that were thrown into Jonathan's backpack that he was going to take to and from the hospital. There was also the foam overlay for the uncomfortable sofa bed and my pillow to add to the pile of stuff we were taking with us. The boot of our car was full by the time Jonathan finished loading everything in.

New Chemotherapy = More Information + Date Change

Yes, today IS Monday, and we are still at home.

There has been a slight change of plans. We are going into hospital TOMORROW.

It all came about last Friday, when I received a phone call in the morning from Laura, asking if we could go back to the hospital for another chat with Dr Trahair about Sean's chemotherapy. We teed up an appointment at 4pm, so as to allow Jonathan to work until 3.30pm and leave the office for the afternoon to join us for the meeting. Last Friday was also Jonathan's last day of work for the next 4 weeks - he had arranged for time off with his managers so he could be at the hospital with us during the most difficult time.

The "Big Talk", AKA The Talk We Had To Have

I feel numb.

And scared.

But mainly numb.

It's been 30 hours since the doctors gave us the "big talk", and we are still trying to process the flood of information that was poured into our laps yesterday afternoon.

Late last Friday afternoon, after Sean was discharged from hospital (after the doctors inserted the central line), Dr Gray called us to change the "big talk" from this afternoon to yesterday afternoon. We were also informed in this conversation that the lead physician was not going to be Dr Tracey O'Brien, but Sean's case will now be managed by Dr Toby Trahair.

Tubes & Lines & A Whole Lot of Tears

We had a déjà vu moment today, when we were handed a bundle of screaming nude baby wrapped in soft bunny rugs. Only today, the screaming baby brought tears of sadness and heartbreak, and not tears of joy and exhilaration.

You see, the last time someone handed me a bundle of screaming nude baby wrapped in soft bunny rugs was the day Sean was born. Sean was born via an emergency C section, so Jonathan was able to see Sean and take all the photos before the doctors bundled Sean up and brought him to me for cuddles. No words could describe how happy and excited and over the moon I felt when I held my perfect little man in my arms that day.

Today, I felt sad and scared and heartbroken.

Transplant News & Nasty Surprises

Today is the last day our beautiful boy will be free of tubes and lines for quite some time.

Tomorrow, we will hand over our gorgeous little man to the doctors, who will insert a central line and a nasogastric tube in the lead up to the transplant. Sean will sport these fetching accessories for the next few months; potentially until Christmas time.

Up until last Friday (2 March), we weren't aware that the central line and the NG tube would stay in Sean post-transplant. Up until the Sunday before last (26 February), we didn't have any real idea what would happen with Sean as far as the transplant and the conditioning therapy were concerned. And up until last week, the dates for our hospital admission and the transplant were moving every time we spoke to someone from the Sydney Children's Hospital. Jonathan and I were getting more and more anxious about the whole thing, and every time we spoke to Dr Gray, we were told that "the big talk" with Dr O'Brien would happen around about 13 March, with a view to us being admitted straight after the talk.