Day 14

Standiupicuddles are just the best! Each time Shaney stands up, I snake my way into his arms. His hugs are just so important to me, and I don't realise how much I miss them until I am back in arms again.

Last time he was in hospital, it was over three weeks before I got a real hug from him. It happened when he went down to have an MRI. I try to keep him company whenever his has to leave the ward to have tests etc. Sometimes they let me stay, sometimes they don't. So on this particular day, down in MRI, Shane had to transfer from one bed to another, but decided to stand for a minute to have a stretch. Well, I couldn't resist the opportunity to sneak into his personal space and sneak in a little cuddle. I cried. It was one of the happiest moments of my life. My hubby was alive and he was standing beside me holding me!

The MRI did answer a long debated question within our household. Yes, there is evidence of grey matter in Shane's brain. Here's a piccy to prove it:

I love his Homer Simpson eyeballs!

Today Shane has continued progressing. They have stopped his Lasics as his fluid balance has improved. His liver function is much better and his skin is much better.

WBCs: 2.3 (range 4.0-11.0), Neuts 1.36 (range 2.0-8.0). We are so close to no longer being neutropaenic!

xx

Day 13

Another day another surprise. 

Shane can change in a heart beat. 

Each day his skin has shown good improvement, but today, he looks... Normal! Its so nice to see you back honey! There are bits still peeling, and still some redness, but overall remarkably improved. He got some beautiful baby skin coming through on his face! People pay a lot of money to get the kind of peel Shane has had! 

There are a couple of things I forgot to mention yesterday. Shane no longer requires oxygen to maintain his oxygen saturation! He is also talking and swallowing without trouble now!

So today I have encouraged him to start eating more clear fluids (broths etc) to begin preparing his gut for solid foods. We have also discussed with the nurse about reducing his TPN to increase his hunger (and drive to eat) as well as changing his meds over to pills where possible. The more he can become self sufficient, the better his chances of coming home sooner!

WBCs: 2.0, Neuts: 1.07. Liver ultrasound all clear. Good improvements all round!  

A day in the life of Shane Prosser: 

0400: Observations (obs), bloods and meds.

0700: Nurse handover (introduction to today's nurses), Breakfast (if he's eating), more meds.

0800: Obs, Meds, Shane showers, mouthwash (cant use a toothbrush while platelets low), more sleep if possible. Drinks cart comes around. TV.

1000: Morning tea, TV, meds. Drs visit.

1200: Lunch, meds, Obs, Mouthwash, visitors, TV. 

1230: Post lunch drinks, TV, sleep.

1400: Afternoon tea, TV, sleep some more. 

1500: Nurse Handover, TV, snooze.

1600: Obs, meds, weight, line checks, TV, sleep.

1700: Dinner, mouthwash, more visitors, TV, sleep, 

1730: Drinks, TV, snooze some more. 

2000: TV, nagging from wife, obs, meds, sleep.

2300: Nurse Handover, sleep.  

2400: Obs.

So there really no rest for the Wicked!

xx  

Day 12

Today Doctors confirmed that Shane has GVHD. This they suspected anyway, but they performed a skin biopsy on Friday to confirm it wasn't anything else. The results came back today. 

In terms of treatment, we continue on the same path as before. IV steroids and steroid cream. The rash is definitely improving, especially on his face, but his skin has started to peel - like after a sunburn. His red spots are still present on his arms and legs, but overall they are showing improvement also. Amazingly the warts on his arm and hand have gone down considerably. This new immune system is working a treat! 

Shane has just come back from a Liver ultrasound. Just to check on the status of his liver as this needs to be monitored closely for GVHD also. His eyes are still yellow as the sun meaning his liver is still under strain. The medications and his TPN (nutrition) can easily do this to his liver, but it is important to be sure. Im trying to encourage Shane to start eating more food (clear fluids like broth and jelly) to reduce his reliance on his TPN. This should help his liver a great deal, but there is a process to return to eating to avoid abdominal distress. 

Shane's blood counts unexpectedly increased today! His WBCs are 1.2 and Neuts are 0.56. It looks like engraftment is happening. 

It has been two and a half weeks, and we're starting to feel the strain of it. Being away from home is sometimes really difficult and we find that we get a little short with each other. Neither of us mean to, its just that we don't really have our relaxing "down time" where we can just snuggle up on the lounge, or go for a walk outside. If you thought you got cabin fever over the wet weekend being stuck in a house, try being stuck in one tiny little hospital room (curled up uncomfortably between two uncomfortable chairs). Now there's a challenge for you!  

On the positive side, we are two and a half weeks down, and maybe another week and a half left to go. Also, my toothbrush holder is so much cleaner without Shane dirtying it all the time!

xx

Day 11

We are so sorry to hear about people affected by Oswald and the flooding and destruction left in its wake. We sincerely hope that you are still safe, and that damaged property can be fixed or easily replaced.

Visiting Shane has bought has been a challenge in itself! Getting there and back again was interesting. Last night Butterfield street and Gympie road were flooded, and power was cut to the car park. If you have been in this car park, you can only imagine how dark it is during a power outage, and how freaky the wind sounds in it! I only freaked out a little when trying to find my car!

Getting to Jenga's house on the other side of the flooded creek was another story! If I had go drive any longer, I would have just about gone past my house!

   This is above the Butterfield st entrance today. Flood waters have receded considerably since last night, but might pick back up again tomorrow when the flood peaks at mid-day.

As for Shane, he had quite a nice day today. He still isn't getting much sleep and he is still requiring oxygen to maintain his oxygen saturation, but generally he is doing really well. He had his last dose of Methotrexate for this protocol. Tomorrow will be his Folinic Acid rescue, and that will complete the protocol for his transplant. Then we just wait and continue managing his GVHD.

His bloods have continued progressing - WBCs were 0.8, and neuts were 0.3. A decent jump up from yesterday. The graft is obviously doing the right things, but we still want to ensure it doesn't do any tissue damage. Today's methotrexate will probably reduce his counts again over the next few days.

Shane's skin has improved considerably in some areas and changed (for better or worse I'm unsure) in other areas. He started on some steroid creams to assist his IV steroids.

Another considerable change today is Shane's liver function. As soon as I saw him this morning, I knew his liver function was funky. The whites of his eyes were yellow and bloodshot, a sure sign of liver issues. The Doctors have now changed his immunosuppressant from Cyclosporin to another drug similar, but easier on the liver and kidney's.

Shane's liver has been very sensitive to treatment right from the beginning. After his ICU stint, his liver function tests were so high they took weeks for them to return to normal. In fact, it only really returned to normal ranges the week he was admitted for his transplant. Talk about cutting it fine!

It really is an amazing balancing act of side effects, medications and treatments!

xx

Day 10

Well today has certainly come with its own challenges!

Firstly this weather is just mayhem! We hope that everyone is safe and sound at home!

Secondly Shane has had a new development today. When he gets his "obs" (observations) done the nurses measure blood pressure, temperature, heart rate and oxygen saturation (of the blood). Around midday today Shane's oxygen saturation dropped down to around 85%. The normal range is 98-100% less than this is a concern.

Initially they thought that Shane was fluid overloaded as they measure fluids in and fluids out. With excessive fluids the lungs can fill up reducing their capacity to re-oxygenate the blood. To treat this he was given Lasix, which helps him remove the excess fluid - very quickly! The first time he was given lasix, he lost 4kgs in just a few hours and it all came from his ankles (cankles rather!).

Anyways, after getting rid of excess fluids, Shane is still struggling to maintain proper O2 saturation and needs to stay on oxygen to help him along. The Doctor now thinks its mostly likely the start of GVHD of the lungs. This is apparently common in the Hyper-acute cases. They are not taking action to treat it today, but will monitor it closely over then next few days.

Other surprising things today are:

Shane ate some jelly and drank some apple juice!
Shane is still, in his words, "wigging out" and talking to his imaginary friends.
Shane's neutrophil and WBC count made an appearance in his blood test. This will most likely change tomorrow as he has his last dose of methotrexate.

I thankfully made it to the hospital safely today and I am staying at a friends house tonight to avoid driving too much in this wild weather. The hospital is mostly insulated from the worst of the storm. We did experience a blackout, but the power kicked back in instantly. Also Butterfield street and the bottom level of the carpark have flooded. I came prepared with gumboots, rain coat, and spare clothes to change into!

Stay safe everyone!

xx

 

Day 9 - Australia Day!

Happy Australia Day!

What a difference a day makes! Shane is like another person today compared to yesterday!

Since starting on his steroids, Shane's temps have ceased. Incredible! His rash is no longer inflamed, but still very red. He is also talking, and swallowing!

I can't tell you how elated I was to be woken up this morning by a phone call from Shane. I've haven't spoken to him on the phone for over a week as he's barely been able to talk! It was such a nice, surprising start to my day!

Methylprednisolone is the steroid used to treat this condition. It is used to suppress the immune system to reduce the inflammatory response. It also promotes feelings of wellbeing as it provides Shane with some energy. It also keeps him awake all night!

Shane will be on this very high dose for two weeks, then they will slowly taper it down. The rash needs to be gone by then.

Today Shane asked the nurses to turn off one of his pain medications as it was starting to send him loopy! I have had a very entertaining day watching him talk to himself and hallucinating! The funny thing is, he's very aware of it. He dozes off quickly and wakes up just a quickly! His throat pain isn't as bad now so he doesn't need all three pain medications to be running any more. Unfortunately he's not enjoying this trip!

This is the first Australia Day in over 10 years that we've spent away from our traditional Hottest 100 celebration at the Charlton Hilton. Thanks so much for my visitor today with an extra special serve of my favourite potato bake! We hope you all had a great, albeit wet, day!

Aussie Aussie Aussie!

xx



   

Day 8

So, apparently it wasn't limbo. After five days of constant temperatures, antibiotics and investigations we now have another diagnosis: Hyper-acute Graft vs Host disease (GVHD). 

The last two days Shane has had some red patches on his skin. It started on his chest, the progressed onto his face, and by the time I left last night, it was down his arms. The nurses thought it might have been a reaction from one of his anti-biotics called Red-Man's syndrome. 

By the time I saw Shane today his rash covered him from head to toe, and his eyes and lips were swollen. It wasn't a pretty sight. He was a little itchy from it, but it didn't bother him much otherwise. 

The Doctors took one look at him today and knew instantly what it was. So they did a skin biopsy to confirm the diagnosis, and started him on steroids to reduce it. 

GVHD this early is unusual, but not unseen. In a way it is good because they aim to have some GVHD as this is also a sign of Graft vs Malignancy. It shows us an active immune system. Actually, it started where there were some small warts on Shane's arm (left overs from his earlier round of chemo), which may mean that the warts helped it happen. 

Hyper-acute means it has happened before they would expect the "acute" (up to three months) symptoms to occur. 

The other positive is that it occurred on his skin. There are many different ways GVHD can manifest itself. It can attack all different organs. The skin is the best organ for it to attack because it is obvious instantly, and can be treated early. Other organs such as liver, and bowels, are very risky as it is caught way too late. 

The Doctors also believe these chronic temperatures are a result of GVHD. So hopefully the treatment will also reduce these. Investigations into causes of Shane's temperatures have revealed nothing concrete, which is such a relief. 

I have attached some pics, but I will add a warning that some viewers may find this disturbing.

   My apologies for the late post! I had a night off from the hospital to see a movie with my Mum and Sister. It was so nice to do something normal since its been two weeks of being there every night. 

xx 

 

Day 7

Life is in limbo at the moment. There are some small changes, but not much. This is life in 5C, we just wait patiently, and celebrate small wins.

Shane is able to talk some more this afternoon. Its so nice to hear his voice! He's had raging temps all day again today. He was around 40 today and stayed there most of the day. But his afternoon dose of panadol has sorted him out and he's dropped back down again. He'll probably start to creep it up again just before I go home.

Temperatures are very unpleasant for Shane. Often he has rigors which is a shivering designed to warm the body up. He lies underneath three blankets and can't get warm. This is the body's defence mechanism designed to kill bugs. Many bugs die in hotter environments, and when your immune system is negligible, its the only form of self defence your body has left. The problem is its not very effective under these conditions.

So far, not many of the cultures have actually grown anything. There was potential a bug in two out of three of Shane's lumen in his hickman line (he has three tubes (lumen) attached to his line that allows for more fluids and medications to go through). They treat this by doing Ethanol Locks. So they stop the fluids going through, and push about 2mL of ethanol into the lumen. It then sits in there for 4hrs sterilising the lumen. They will repeat this process every day for 5 days. It is worthwhile protecting Shane's Hickman line as long as possible. This basically his lifeline. As he is no longer eating or drinking, he requires nutrition and fluids to go through this line not to mention life saving medications. Without this line, he could risk worse infection or bleeding by trying to insert other types of lines into veins etc.

White, blue and red are the colours for the three lumen. Each colour is designed for different purposes most of the time. For example, the red one is often the one bloods are taken from. 

With such low platelets Shane is at risk of bleeding. Platelets are your clotting cells designed to create a wall of tissue to prevent further bleeding from happening. Red blood cells are the cells responsible for carrying oxygen - essential for cell function and energy production. When these are low Shane gets red spots on his skin that looks a little like a rash. This is usually worse around his legs.

I think the next few days are going to be much of the same. Just playing the waiting game. If these temperatures persist, they will probably do some more investigations.

Might be a wet few days also!

Sweet dreams xx

Day 6

"Home is where the heart is"

I spend a lot of time at the hospital with Shane because home is wherever he is. My house feels empty without him. So all I do there are my basic essentials like washing, cleaning and sleeping. I am much more relaxed and at home when I am sitting beside Shane, even if he is sleeping. 

A big thanks to Grandma for the pics and letter. These really bought a smile to my face after a tough and anxious day. Little things like these, my favourite music and wonderful messages make me feel good also. It is important for me and Shane to surround ourselves with positivity and happiness!

"The Nanna's" are the colloquial term for Grandma Julie, and Nanna Pam who are Shane's carers on Wednesdays and Thursdays, so i can work. 

It is really important to have people here with Shane to act as advocates for him when he is unwell. Shane isn't always aware of what is happening, and as wonderful as the staff are here, sometimes we need to step in and make sure he is getting the right treatment at the right time. 

The Nanna's are wonderfully patient (yes, even Julie) with Shane as they seem to get him on his most crappy days. Don't take it personally ladies, it just seems to be how things pan out! Thanks for all you do for us!

Today was a crappy day. Shane's temperature stayed above 38.8 all day, until this afternoon. When Shane had his 6pm panadol he had a big sweat and it dropped down to 37.2! The best its been in a day or two. Its amazing how quickly things can change around here. Shane does need close and careful monitoring all the time. We have learned that things can change in a heart-beat, for good or bad. We can never be too relaxed around him.

I didn't realise yesterday that they wait until the temperature is below 38 before giving blood products. Shane's platelets were at 19 (below 20 requires a platelet transfusion) this morning. It meant they had to wait all day before being able to give him a transfusion. 

   This is the platelets finally going through!

It is a good night xx

Day 5

If you look closely, you can almost see Shane's room in the top right hand side! 

The temperatures have been a hot topic today. It went up another degree from when it first spiked yesterday, so they had to re-culture everything. There are no results back so far, so thats good. 

Doctors have increased his pain medication further, and Shane is sleeping regularly (when the nurses aren't disturbing him every hour!). 

Thank you so much to all those inspired to give blood after yesterday's blog! You really are lifesavers! 

Did you know that Redcross now supplies blood to Queensland Health for approximately $300 per bag. Previously it was free, but Redcross couldn't manage the costs on donations alone. The $300 is how much it costs to employ staff, run the vans, promote blood donations, sterilise, analyse and separate the blood into different parts. Shane has used many different types of blood products and I have endeavoured to keep a count of them. Since October last year Shane has used 15 bags of Platelets, 6 bags of RBCs and 4 bags of blood plasma. These are the ones I know about, there may have been more during this time. This is over $3000 worth of blood products. 

The overall costs of caring for Shane are astronomical. In ICU, it costs $10 000 per day to stay. Shane's first five months of chemo (just the chemo alone) cost in excess of $300 000. This transplant will cost after three months more than $200 000. I have no idea of the costs of things like blood tests, x-rays, blood cultures, linen, food, medications, cleaners, and the list goes on. There are many faults in our public health system, but the fact they are prepared to spend this much money to provide essential treatment for my husband is something I am so grateful for!  

Also, if his Donor was from overseas, the cost of collecting the cells would be $50 000. Just for one person to fly to the country, and pick up the cells, and fly them back! And the government will still pay for it! Amazing!  

So, this is where your hard working tax money goes to! 

xx

Day 4

Day four has bought along some gloomy weather both outside and inside.

Today Shane spiked his first temperature. It started at 38.4 degrees, and then progressed to 39.2 degrees. This is a pretty major event as there is a protocol that needs to be followed when a fever begins. The nurses need to get "cultures" for everything. This means bloods are taken from both the Hickman line and peripheral blood, and samples are taken of everything else. These samples are sent away to pathology to be cultured to see what type of bug/s are present. He is then seen by a Doctor and started on some broad spectrum antibiotics. Pathology will take a few days to grow a culture (hopefully if its not a crazy quick growing bug!), so we wait and watch until we know more information.

Yesterday I sensed there was a temperature on its way. The first clue was his temperature was 37.1 degrees. We know from history that Shane lives at 37.8 degrees, and anytime he has gone above 37.0 degrees, he was only ever heading in one direction - upwards. The other clue was he had a really hot head last night, the rest of him was fine, just his head was burning hot - bizarre!

So his blood counts have completely bottomed out today. Just to confirm my suspicion of a temperature being on its way, Shane's platelet count dropped dramatically to only 28 (normal is 140-400). Tomorrow, Shane will require platelet transfusions as he will definitely be below 20. Platelets are very sensitive to infection and are usually a warning sign.

His neuts and WBCs have also dropped, so again, a fever is no surprise. RBCs are a little more hardy and are living at 106 (normal 115-180). Previously, if they got below 90, that would require blood transfusions, but now due to a severe shortage of blood the cut off point is below 80.

While Shane has a temperature, he will churn through his blood very quickly and will require transfusions almost every second day depending on how sick he is and how long it lasts for.

So if you have some spare time, please go and give blood!

"Make another heart throb"!

xx

Day 3

"To my Amazing Donor, 

My partner and I are so grateful for all of your effort, time and cells. I have been battling cancer for a while now, and what you have given us is hope for our future. A future where we may one day have our own family and live to a ripe old age. 

Thanks to you, this is all possible. I promise to cherish your cells and treat them well! 

Words can not explain how grateful we are. 

Thank you. 

Your recipient, partner and family."

How do you say thank you to a person like that? One who has given the gift of Life for someone completely anonymous! I have been thinking about what to write to the donor for days. It has to be completely anonymous - we can't say our names, ages and location (i.e. from QLD). This all makes it terribly difficult! I hope this card does it justice!

The Donor isn't the only person we owe many thanks to. There is a myriad of people we can't thank enough. Our friends and families are an endless source of support, advice, food and hugs. This experience would be so much more difficult without these people caring for us. The love on facebook has just been so touching, and a source of strength and happiness when times have been tough. Thank you. 

My role as the carer is a pretty tough gig. There are so many facets of caring for someone. I have to make sure he has all his meds, eats well for each meal of the day (including snacks), attends the right appointments on the right day, make him juices and smoothies (that he doesn't then drink), remember to tell the Doctors things that Shane forgets, and the list goes on. 

When Shane is unwell, he is completely self focused. He doesn't think about me, or even talk to me much (understandably). His sense of humour dissipates and my attempts at humour are brushed off. This only happens when Shane is really unwell, or in a lot of pain. But it means that during the most difficult times, my key pillar of support is not available to me. He doesn't hug me back when I hug him, and he's not there at home waiting for me to unload after a rough day. He forgets to say "drive safe" when I leave late at night. These little signs of affection and intimacy don't exist during these tough times.

But I know, before anyone else, when Shane is getting better. How?

He starts noticing my boobs. 

I can't tell you how elated I am when we start having small little moments of intimacy! The highs and lows of this process are extreme, but the highs really do take the cake! 

Today is a bit of a low. Shane is in a lot of pain and just feeling unwell in general. So I'll keep day-dreaming of the day he sees my boobs again. 

Good night xx

Day 2

Today's blog is going to be very simple, because today has been very simple.

Shane's oesophagitis has progressively gotten worse and today he started on TPN. TPN is a nutrition supplement that is given IV. This is to keep giving him essential nutrients that he is unable to eat. Shane is still eating some foods, but it hurts a lot now. They have also started him on Patient Controlled Analgaesia (PCA) which means he can press a button every five minutes to administer Fentanyl (a pain killer). This helps to keep him eating, drinking and swallowing. Shane also needs to do regular (more than four) mouth washes every day to keep everything clean to avoid infection.

Aside from the discomfort, there haven't been many other changes. His blood counts have progressively dropped, as expected, but they haven't yet completely bottomed out. He has a sexy husky voice, and he is a little low on energy (but a snuggle in his blankey seems to be working a treat!).

I guess my attitude in the blog may come as a surprise to you. It is a very heavy situation, but when you live with it everyday, it is hard to keep up that intensity. Don't get me wrong, we understand very clearly the risks involved in all this, and these risks stay in the forefront of each of our minds. But when we're living day to day, life around here is pretty boring.

We spend a lot of time on our arses watching TV and just talking shit. Thats why we can be creative about things like the names of the poles. Fun stuff makes you forget how serious the situation is, and it protects you from seeing, hearing and thinking about what else is going on around you.

Most of the time the families and friends of the people in 5C are really nice and ready for a chat, but occasionally you will see and hear things that you wish to forget. I will never forget the moment a young man passed away and one of his family members walked out of his room just as I was walking past. You could see the tears welling in his eyes as we made eye contact. You could see the pain clearly written all over his face, the incomprehension.

There are many moments like that around this ward. You really do have to protect yourself from it all, as we have our own battle to fight. There are great benefits of meeting others going through the same rough time as yourself, however there can be a very severe downside to it.

My sole focus though is on Shane, and what I need to do to keep him well physically, mentally and emotionally. Everything I do each day is with Shane in mind. It is focusing on the practical things that gets you by each and every day. You learn to not plan for the future and to live more in the moment (or in the television:).

xx

Day +1

This is our home away from home. We have everything we need plus some (except perhaps a comfy lounge for me!). Shane spends nearly all of his time in bed so there's plenty of room for the rest of us (no more than two at a time of course:). He also has his own min-bar fridge, cupboard and bathroom.
We are on the western side of the ward where we can watch the sun set over the nearby mountains. The room is individually climate controlled, but it doesn't get very cool unfortunately. This is the most comfortable you could get in the public health system.

The nurses in this ward are second to none. They are predominately young and there is a nice balance between males and females. They always have time to have a chat, or to explain something to you. They respond positively to nearly every strange request, and they treat you like a "mate". They all act very casually most of the time, but when the going gets tough, they don't miss a beat. The nurses looking after Shane the night he went into ICU were amazing. They knew exactly what needed to be done, and ensured the after hours Doctor knew too.

I can not fault any of the nursing staff here. They all do their jobs properly even when they're not supported by government policy, or when their pays have been stuffed for ages. They still give 100%.

Its not only the nursing staff who are amazing. The support staff are incredible too. When spending so much time in this place, you learn that kindness is the best currency. The food services people sometimes sneak in an extra chocolate bar, or the TV person will make sure your TV works well, and sometimes accidentally puts on Foxtel. The cleaners are always grateful for a little chat and a laugh. All of these people can really make your day by putting a smile on your face when you are feeling down. These people make the whole experience less heavy.

 Charlotte.

Today has been boring, but don't get me wrong. I like boring. It is good! Shane has been a little low in energy today, and his throat is hurting more now. He tried to eat some potato gems soaked in gravy, but couldn't swallow them without lots of pain (so guess who had to eat them).

The only treatments for today were some more cyclosporin and the start of methotrexate. Methotrexate is a chemotherapy drug. Shane was on it for his first round of chemo, as well as his maintenance chemo (so on it for a long time overall). The methotrexate is used in this instance to keep both Shane's original immune system and his new immune system from having a war. The dose is not so strong, but strong enough to contribute further to the "mucousitis" that is effecting Shane's throat. Mucousitis is a sloughing away of the soft lining of the gastro-intestinal system - which starts in the mouth, and finishes at the other end.

The immediate plan for Shane's treatment now is to continue with methotrexate on Days 3, 6 and 11. Twenty-four hours after the methotrexate is given, Shane will be given a Folinic acid "rescue" to flush out the methotrexate preventing toxicity.

We will expect that Shane's blood counts will "bottom out" (at least neuts and WBCs) in the next few days. His neuts are sitting on 0.8 at the moment (normal ranges 2.0-8.0). It will take approximately 14 days for his stem cells to engraft in his bone marrow and to start doing their thing. It will be a long wait!  

Happy Friday xx

Day 0 - Transplant Day

Today was the day. The day the Stem Cells were given to Shane. As expected, it was a pretty big anti-climax. The cells arrived in a small bag, looking a little like milky tomato soup. They were administered through Shane's Hickman line in about 30-40mins. Shane slept through most of it due to his "premeds" knocking him out!

We are so grateful for the Donor of these. To donate stem cells (aka bone marrow) it is a process that takes a few days. Firstly they have to undergo further blood tests to check for blood typing and cytomegalovirus (CMV) status (a virus that can be re-activated during the transplant process). They are also tested for any major allergies. They also need to remain healthy during this time.

Then a few days prior to donating, the Donor must inject themselves with a drug called GCS-f. GCS-f stimulates the production of stem cells, and brings them out of the bone marrow. These injections can often cause some joint and bone pain (a bit like growing pains).

On the day they donate, they are hooked up to a machine that filters the stem cells out of the blood, and returns the blood back into their body. They can often be hooked up like this for up to eight hours. This process is called Apheresis. This process happened only yesterday!

The Donor has to remain anonymous but we know that he's an Australian male and 49 years old. Apparently he was very happy to help out! He was not paid for his cells, or his time off work, or his efforts. Travel costs would have been covered if necessary. So this was all done out of the goodness of his heart! What an amazing person!

Shane prior to his long snooze...

Getting connected at his smart sites.

Cells going through.

This is a Haematopoietic growth chart. You can see the Stem Cells (immature cells) at the top, and how many different blood cells that they can become. The cells in Shane that have gone awry are the B-Lymphocytes.

Shane is relatively well otherwise. His throat is still sore, and he still requires soft foods, but he has maintained some of his appetite. He had more energy than yesterday, so that is always a plus!

We had a lovely snuggle at 8pm this evening. "Think Positive for Shane" has been just so amazing. There really isn't much everyone can do to help out, but giving us that warm fuzzy feeling is much better than anything physical. Thank you to all who participated, and to everyone who have left comments for us on Facebook. It really makes such a big difference in our lives.

Thanks again to our anonymous Donor. You are a wonderful person!

xx

Make your wish count!

In September 2010 my husband, Shane, was diagnosed with Leukaemia only two weeks before our wedding. It was heartbreaking when the doctor sat down with us to explain that Shane needed to begin treatment immediately and would be unable to attend our wedding. He went through five months of chemotherapy which were a roller coaster ride of physical, emotional and financial strain. At the end of chemotherapy there were two long term treatment options. Stem cell transplant or two years of maintenance chemotherapy. 

Stem cell transplant is the best chance of a cure for leukaemia and other blood disorders. This requires a donor with a matching tissue type. Unfortunately for Shane, his brother was not a match, and there were also no matches on either the Australian or International Bone Marrow Registry. Shane has a very strong ethnic background, uniquely blended with an English background, making it difficult to find perfect match. 

Two years later, after celebrating our first wedding anniversary, Shane relapsed. Again treatment began straight away, but this time with dire consequences. Long term chemotherapy leaves the body more susceptible to severe infections which landed Shane in intensive care. Two turbulent weeks we waited for him to regain consciousness. It was the most challenging experience of my life. Shane miraculously  managed to survive it, but it started to became obvious that long term survival would be impossible without a stem cell transplant. 

Two months on from our ICU experience, Shane is back in hospital undergoing a transplant. There are still no perfect matches so we are risking an "unmatched " transplant. Unmatched transplants can be complicated by greater Graft vs Host disease when compared to matched transplants. 

The Bone marrow registry desperately needs more young donors, especially males and ethnic diversities. Blood cancer affects loads of young people, and coordinators try to match people in a similar stage of life. 

In some countries people are automatically registered for organ and tissue donation from birth. They have the choice to opt out if they wish. These countries provide the greatest donations to the rest of the world. It would be amazing for Australia to adopt a similar mentality to tissue and organ donation. Imagine the lives that could be saved! 

Today Shane had his Stem Cell Transplant. We have been on a difficult journey already, but we still have a long way to go.

Thank you so much to Shane's donor for giving the gift of Life.

Day -1

One more sleep.

I can't believe how fast time has gone since we were first told Shane needed a transplant. At that time, it seemed an impossibility. How on earth will Shane be strong enough to survive another round of treatment?! We had only six weeks from Shane's discharge to readmission for transplant. The gravity of our situation dawned on us immediately. Shane had almost nothing left after suffering severe septic shock and spending two weeks in intensive care. He came out of there just skin and bone, and unable to walk or stand on his own. I have learned in my industry: Strength = Resilience.

Shane however, showed such a fierce determination to regain his strength. His first day out of ICU he told the nurses he wanted a shower and to go for a walk. They discouraged it as it was unheard of! No one fresh out of ICU walks or showers, least of all do both in one day. But Shane did.

In a little over a week, Shane discharged himself from hospital. The Doctors were anxious about letting him go as he was still such a falls risk. But Shane was unstoppable.

Since that day, Shane has tirelessly worked on improving his strength, lung function and stamina. He has eaten like a horse, and was force fed a bunch of smoothies and juices, as well as swallowing a ton of medications each day. Prior to starting treatment, we had a weekend away. Over this weekend, we spent a lot of time body surfing at Mooloolaba (cause the surf wasn't suitable for either of our fitness levels). Shane was strong enough to play in the water for hours, and thoroughly enjoyed being smashed by the dumpy waves.

I can not believe the difference six weeks has made. Shane by no means regained his full strength, but he managed to return to his normal self, all the while continuing to manage ongoing issues with his liver. He was able to survive a whole day out of the house without requiring time on the lounge. He even managed a brief return to the gym. Amazing.

I am so proud of you Honey! Have I told you today that you are amazing?!

Today was the last of the TBI. Shane spent most of today asleep as he is feeling quite a bit of fatigue from his treatment. Fatigue from cancer treatment is so severe its not even imaginable by someone who hasn't experienced it. It is also very emotional. It is difficult to maintain a good healthy attitude, when suffering such an unpleasant side effect.

Shane has also started a soft food diet due to oesophagitis (inflammation in the oesophagus).

The milestone of today was starting the "Cyclosporin" - the all important immunosuppresant.  This medication will control the T-cells in the immune system that are responsible for recognising and attacking foreign bodies. These cells are the main ones responsible for GVHD.

Shane was also give a dose of Immunoglobulin which is blood by-product designed to boost the immune system - but not the T-cells. Its strange to see him be given both an immunisuppresant and an immune booster in the one day!

Tomorrow is the big day. Day 0 - Transplant Day.

Wish us luck xx

Day -2

Microwave Man is at it again. These pics are of him being set up for his Radiation therapy. The Nurses have to replicate his exact position every time he gets zapped. There is a fair bit of preparation for these procedures including measuring, making moulds and tattoos. All up it can take up to an hour and a half to do a session, and most of that can be spent in preparation. 

Do you like Blue Hugs' sexy makeover? Thanks so much to Lozzy for looking after the visual aesthetics of this blog! It should be easier to leave comments too. 

I bet your dying to find out what is going on inside Shane's bone marrow while all this treatment is happening. Each day, Shane has a blood test (sometimes two!) early in the morning so they are analysed prior to the Drs arriving each day. From these blood tests we get a whole bunch of information about how Shane is coping with everything. The main ones we watch are red blood cells (RBCs), white blood cells (WBCs), neutrophils (neuts) and platelets. We also watch things like liver and kidney function to monitor how the vital organs are coping. 

With chemo and radiation, the aim is to almost eradicate the bone marrow (where your blood cells are produced). This results in a reduction in virtually all blood cell types. This causes a condition called Neutropaenia. Neutropaenia literally means "without neutrophils". The neuts are WBCs essential to immunity so Shane is monitored closely in their absence as he is at a great risk of infection during this time. Infections can vary from minor temperatures from an unknown source or they can cause a condition called septic shock. More on that later. This is the period of time that Shane will require regular blood products to keep him going. Unfortunately they can only give him RBCs and platelets, and not WBCs or Neuts. We just have to wait patiently for those!

Stem Cells are baby blood cells who don't know what they want to be when they grow up. As stem cells mature, they differentiate into RBCs or WBCs etc. So, when the donor stem cells are transplanted into Shane, hopefully they will find their way into his suppressed bone marrow and start differentiating and reproducing. This process is called engraftment.

Shane is starting to experience a sore throat and is having difficulty swallowing certain foods. This is one of the most unpleasant of all side effects for bone marrow transplant (BMT) patients and often leads to being put onto intravenous (IV) nutrition. Fingers crossed it doesn't get too bad! 

Peace xx

 

Day -3

Cuddles are the currency of life! In situations like this, you really do learn to appreciate the small things. A hug is so powerful. It gives strength and comfort all in one go. It can be used in happiness and sadness, in boredom and excitement. Blue Hugs are those bittersweet hugs that you never want to let end.

I give Shane a Blue Hug every night before I go home.

It is such an emotional moment as we are usually settling into bed beside each other at this time. It takes all of my strength the tear myself away from him as the voice of reason prevails and tells me its late and I need to go home.

The weekend went by so fast and today I found myself back at work again. Meanwhile, Shane had a busy day working on his tan. They call it radiation, but its really just sitting in a solarium soaking up some rays. All he has to do is sit there in good squishy comfort for 40min and watch Shrek. Radiation is basically high powered X- rays that can be targeted to certain areas and vary in intensity. Today Shane started the total body radiation (TBI), but last week he had eight days of Craniospinal radiation as a "boost" (so the Drs say). This is due to the fact that Shane relapsed within his Central Nervous System (CNS). This will hopefully ensure that the Leukaemic cells are well and truly gone. According to the radiation Drs, this type of leukaemia is quite sensitive to radiation therapy. However, without stem cell transplantation, all research suggests that patients eventually relapse systemically. Which is bad news.

Other than Shane's glowing tan, side effects are not too bad today. We'll see what tomorrow brings (hopefully a bunch more hugs... Pink ones!).

Happy Monday xx

Day -4

You may have noticed that the days are counting backwards. This is because transplant day is Day 0. Then we count forwards from there until Day 100. Day 100 is the key milestone to reach post transplant. It marks the rough cross over where a patient can experience "acute" graft versus host disease (GVHD) and "chronic" GVHD. It also means that the stem cells have taken residence in the bone marrow and are providing some immunity to infection, and hopefully the leukaemia.

Today is the second day of chemo for Shane and some side effects are starting to become apparent. The nurses always have a really nice and polite way of talking about these side effects. For example they might say "abdominal discomfort" where as our family are a little more crude and call it "runny bums"! Either way, it's not an overly pleasant experience, but we know from the past that there are worse things than mild runny bums!

Shane's pole has been affectionately named "Charlotte" courtesy of our good friend Lotta. Thanks!
Tomorrow Shane starts Total Body Radiation (TBI) and will have this for three days. The majority of chemo has finished for now. There will be some small amounts of chemo later, but for a different purpose.
Good night xx

Day -5

No matter how much time you have prior to an event like this, you can never be fully prepared for it! I have spent the better part of today tying up loose ends, only to find a whole bunch more. We were fortunate enough to have a bit of a holiday over the festive season. But how do you weigh up the need to get things organised with the need to have some time out having fun? The answer is, leave it to your wife to sort it out for you and go have a good time!

Today was the start of chemotherapy. Shane typically handles chemotherapy quite well, but sometimes there are a few surprises. So we'll just wait and see. We will expect his hair to fall out in approximately 14 days unless his radiation gives it a little assistance. Surprisingly, he currently has a good beard and a really dirty sanchez moustache! Classic look.

Shane is now hooked up to a pole with attached fluid bags for at least three days at a time. Depending on the different type of pole, they are affectionately named after supermodels. One has been named 'Miranda' and another 'Monique' - the names are derived from the physical properties these poles display (busty vs booty). Today's pole is a new one for Shane, and appears to have better off-road properties. Which is great as the pole provides a huge barrier to getting out of bed and going for walks.

The fluids attached to this pole are administered via a tube running through Shane's chest called a 'Hickman' line. This line runs through his chest (a spot I call his third nipple), up over his collarbone, and in through the vein in his neck and down towards his heart. This line makes it very easy to provide fluids, chemo and access blood without treating shane like a pin cushion. It sounds awful, but it really does work much better in the grand scheme of things.

Today has otherwise been a very boring day. Which I am very grateful for!

Day -6

Today we find ourselves back in the RBH Heamotology ward. It has been a long and ardous journey to get to this point, and it is most certainly not near the end. My Hubby, Shane, was diagnosed with acute lymphoblastic leukaemia on the first of September 2010, just two weeks prior to our wedding day. It was a devastating blow hearing the news of his diagnosis, but it answered so many questions about why he couldn't fight his cough, and why he was sleeping all the time, and why he was so white! 

Shane started chemotherapy treatment immediately and we postponed our wedding day. His treatment was a roller coaster of highs and lows and we learned many things about ourselves. I for one am amazed about what the human body is capable of surviving and how the right attitude can make the world of difference to your experiences. I also learned about cleaning and cooking as suddenly hygiene and dietary control were a part of our new normal. 

Two years has gone by now and we pulled through our ordeal with the great help of our friends and families. We did eventually marry one year after our original date and it was a wonderful day! We spent the next year recouping our finances as such a diagnosis has a huge impact on this area of your life. Shane was fortunate enough to have income protection so we still had some income, but when faced with such a complex medical problem, the costs of pharmaceuticals and alternative therapies finances dwindle quickly. We were also quite relaxed about spending with the attitude "whatever Shaney wants, Shaney gets". I mean, how could you say no to those big brown eyes?!

Unfortunately, in October 2012, shane was diagnosed with a CNS relapse. This meant starting more chemotherapy (both intravenous and through lumbar puncture), radiation and a stem cell transplant. 
This leads us to today - Day -6 admission into the ward for a stem cell transplant. A stem cell transplant (or bone marrow transplant) comes from a donor and involves suppressing the bone marrow and implanting stem cells to produce new bone marrow. The rationale for this is a new immune system is more likely to recognise leukaemia cells and destroy them. It is the best chance of a cure from modern medicine. 
Here is where this blog begins. It's going to be a turbulent ride, but one worthwhile reading.