Day 37

Hi everyone! I hope you're not missing us too much!

Things have been travelling well. Shane is continuing to improve every day. His appetite has dramatically improved this week! He's now able to eat the same amount as before, he just suffers from tummy discomfort when he does! Some foods are starting to taste better, but other foods still have no flavour. He is starting to enjoy his food though, and eating isn't so much of an issue any more. This is a big relief for us, as meal times have been difficult as Shane hasn't wanted to eat some of our normal meals, so we've basically had to start over again with our meal planning. But this has also been a good opportunity to try new things!

We had a review with the Doctor yesterday and all is continuing to improve in their opinion too! Today the steroids were reduced to 75mgs, and some of the Tacro (immunosuppression) also. Liver and kidney function are all perfect. Shane's Platelets are still very low, so there is high risks of bleeding with any cuts etc.

Shane's skin is looking much better. He has reduced the amount of steroid cream that he needs, but there have been some small patches of skin changes so he still needs to keep some of it up.

Shane has been suffering from a bit of fatigue the last few days. He was a bit ambitious on Wednesday and did 45min on his bike in the living room while watching a DVD. It was an amazing effort, but he's been pretty tired since then. Today we endeavoured to go for a ride, but we forgot how hilly our area really is! Shane did really well, but needed to walk up one of the last hills. Its so degrading for him as riding a bike has always just been so natural to him! But, at least its a start.

So I have been pondering further on Shane's new immune system, Leroy. In 12months time Shane will have to re-do all of his immunisations again. When you think about it, his immune system is less sophisticated than a newborn baby's. They at least have some protection from their mothers, and are generally kept safe from exposure to too many people. That's not so easy to do with Shane. He still needs to get out of the house and go to the shops etc. So we need to be even more careful as contagious diseases like chicken pox could be a big problem. This also applies to things like the common cold. 

Your immune system has a memory, each time you get sick or immunised, your immune system learns to recognise these diseases, so the next time you come into contact with it, you can recognise it early, and remove it quickly. Shane's new immune system most likely won't have any recognition of these diseases. 

Shane's uncle, who is on the bone marrow registry, has been asked to donate! We are thrilled to hear about this! Congratz Kent on having the opportunity to do such an amazing thing! 

xx

  

 

Day 33 & a 1/3

We are now one third of the way through the 100 Days!

Today Shane saw the Consultant, Dr Cam Curley, and all appears to be going well.

His blood counts are all fine, except his platelets which are really sensitive to some of his current medications. Shane's skin is going really well. He's been advised to reduce his steroid creams to see how the systemic steroids are working to manage GVHD. They are slowly working to reduce the need for steroids and immunosupression. Shane and Leapin Leeroy Loggins will just have to learn to live together!

The last few days Shane has been experiencing some unusual shaking, especially of his hands. It makes things difficult because he's already so weak so handling things like cups of tea is tricky! Apparently its from the Tacro (immunosuppression) and is a common side effect. This will improve as they start to reduce the Tacro.

The best news of today is the double negative result of his CMV test. This means he no longer has to be on the gancyclovir - the pump he's been connected to this last week. You can tell that Shane is just so relieved to be free of this baggage!

The scales have also been kind. Shane has put on about 1.5kgs! Food choices seem to be broadening, as we try different foods plus I think Shane's tastes are improving in general. He finished a meal on the weekend and said "That was good". He actually enjoyed the meal! Great!

Energy is also getting better every day. Shane hasn't done much exercise yet, but he's certainly kept busy since coming home. We are getting well underway with our plans of doing things around the house. The exercise will happen soon enough. Shane is really motivated to get moving!

xx

Day 30

Last night the lounge got me again! I just got settled into watching a movie, next thing I know its midnight and time for bed! In amongst all the snuggley comfort, I completely forgot about Blue Hugs! 

So my apologies for keeping you all waiting! 

Yesterday we had another review with the Doctor and all appears to be travelling well. Shane's blood counts are: RBCs - 109, WCCs - 5.5, Neuts - 4.2 and Platelets - 90. All within a very healthy range! Liver and kidney function are all looking good too. But the best news was that results from Tuesday's tests showed negative to the Cytomegalovirus. Two negative results means that shane can cease the treatment for it. This means no more pump connected 24/7! 

Our next step is to improve Shane's conditioning. His muscles are so weak at the moment, and he is so unfit its not funny. Yesterday we found ourselves walking up a small incline and Shane was puffing considerably with the exertion. He has really sore legs today! When you think about it, not only was he lying in bed for a few weeks, but his cardiovascular system has really taken quite a hit. We are really starting right at the beginning. 

But that is great because we can start afresh. It means there are no more muscle imbalances! We have plans to walk each afternoon after work, and we now have a wind-trainer so Shane can do some cycling in the comfort of our own home. Of course I'll have him doing lots of core-stability exercises to ensure he doesn't suffer too many aches and pains in the long run! He'll also get back into the gym soon to start some resistance training. 

If you remember strength = resilience. 

Plus doing things that are good for you send what we call "live' signals to your body. If you show it you love it, it will love you back! 

We'll also start doing some brain exercises. With the all the treatment Shane has had to his central nervous system, it is really important that we look after that area too! 

This is Shane back behind the wheel for the first time! He drove all day and it was so nice to be driven around! He managed to nail two reverse parks, but stuffed up a normal park! Classic! 

I would like to take this moment to thank everyone for reading this blog. When I checked this morning, there had been over 11 000 views which has blown us away. I am completely amazed that so many people are interested in our storey! And for those of you who waited up late, just to catch the next instalment, thank you so much for your patience!  

I hope that Blue Hugs has generally made sense and given you an insight into bone marrow transplantation. I have now exhausted most topics and as life returns to a new normal, there won't be much exciting action to blog about. So I have decided to reduce the blog from daily to every few days or whenever there is something exciting happening. Keep your eyes on my facebook page for updates!

Peace 

xx 

Day 28 - Happy Valentines Day!

By the way, Shane is doing well. Amongst all the hype of diet and supplementation I completely forgot to mention how Shane is going! I also forgot to mention the most significant part of him being attached to a pump 24/7. The medication is designed to be administered every 12hrs. The nurse that connected it thought it was a good idea to start it at 1pm that day. This now means that it goes of at both 1pm, and 1AM! That nurse obviously never spent the night connected to a pump!

There is one topic that I have been avoiding, and it is about time I finally tackle it.

The Doctors.

This is a difficult topic for me as I have developed a love-hate relationship with Shane's Doctors. Not all the doctors, its more the consultants.

Over the years, we have gotten to know these consultants reasonably well. We're on a first name basis with these doctors and we know bits about their hobbies, habits and families. This doesn't make it any easier when they have bad news.

There have been many absolutely heart-breaking moments when with these doctors. They are the bearers of such awful news, and this is a very heavy responsibility for them to bear. First they have to inform you that you have cancer, then they run some more tests to tell you what type of cancer, then they decide what type of treatment you require, but the most harrowing parts are when hearing the percentage chance that you will survive or when they approach you in the company of a social worker. We tend to (as best we can) ignore the percentages, we focus more on the fact that there is a chance of survival, no matter how slim, there is a chance. If a doctor is in the presence of a social worker, then you know the prognosis is not good.

There is not a moment now, after all we have been through, that I don't suffer anxiety when they walk in the room. One Haematologist is so acutely aware of my moods, and "worries" that he's said anything to offend me. It has been difficult to explain that it wasn't offence, it was more shock. If he took a step outside himself and listened to the words he was saying, then applied them to the person he loves most in his life, then he would understand a little better.

Don't get me wrong though, many of these Doctors are great people, especially the ones directly responsible for Shane's treatment. They have been genuine and caring. When all is going well, they're happy to have a joke with us, or a bit of a yarn. When things aren't so well, they're a little more serious about things and distance themselves somewhat. It must be hard for them to develop a rapport with patients, when few of them actually survive. I make sure that to them, we're not just patients, we're humans, and worth fighting for.

The other amazing thing about the Doctors at the RBH is they work as a team. They discuss all of their cases, analyse all the information, and make a joint decision about a treatment plan. It is comforting to know that you're life isn't being handled on the whim of one person's perspective.

Happy Valentines Day!

xx





 

Day 27

For the first time in my Blogging career I have had a topic request!

Mat has asked me about Shane's nutritional and supplement requirements. Which is an enormous topic when it comes to treating cancer. There are many who believe that this "diet" and that "supplement" can "cure" cancer. Being a cancer survivor, there are so many products that are pushed towards treating cancer because traditional methods are "poisonous" and more lethal than the cancer itself.

I have news for you. If it was possible to treat Shane's cancer with a diet / supplement I would have been all over it. But the simple truth is without traditional methods of cancer treatment, Shane would not be watching TV beside me. Yes the process has been challenging, but it has been well worth it. I have a very healthy respect for the intelligence of the treatments available that can treat the enormous variety of cancer types.

In terms of the doctors recommendations - you would be surprised how little information they provide. They prescribed Shane essential nutritional supplements that can be monitored through blood tests and especially those that can be affected by medications. These supplements include centrum advanced, magnesium, potassium, folic acid (vitamin B9) and ascorbic acid (vitamin C). In terms of dietary advice, the words from the wise were: "Eat whatever".

I found this very interesting. We all know chemotherapy and radiation therapy can both affect your taste and nausea can make eating at all very challenging. From a treatment perspective it is crucial to maintain a healthy weight to ensure you're resilient enough to continue with the full dose of treatment. So Doctors and Dieticians both recommend a high protein, high calorie diet. This includes: "Whatever"!

From my perspective, I believe that a healthy, varied diet is the key. Fresh fruits and vegetables either lightly cooked, raw or juiced will give you loads of good vitamins. Juicing is great to pack a lot of punch in one foul swoop. But I don't believe that is all you need. Lean meat, chicken and fish are also important, as well as natural yogurt, milk and nuts. I make the effort to ensure Shane eats well and that he gets as much nutrition as possible in his diet. I try to avoid foods that are high in sugar, highly processed foods and foods high in preservatives. But the problem with all this is, Shane has a free will. He will eat what he wants when he wants, and there's no stopping him. He does endeavour to eat well, but when his tastes are affected, he'll eat anything with flavour, healthy or not!

There are a lot of diets that are highly recommended for cancer, but if you do your research, many of them are unsafe, and extreme. And no matter what evidence you show me, daily coffee enemas do not make sense! In my mind, there is no way that coffee inserted into a rectum will make its way through your intestines back into your liver to open the bile ducts.

There are some other certain foods recommended for cancer that can cause Cyanide poisoning. What possible benefit could these foods provide that over-rides the potential for Cyanide poisoning? Especially when being used on such a vulnerable population!

Shane's Doctors also recommend avoiding alternative medicines that hasn't been approved by them. This is to avoid medication interactions, which, when you look at Shane's long list of meds, you can understand.

As you can see, there is a lot of conflicting information. In the end, I believe that you eat in moderation,  eat a variety of plant based foods, and lean meats and dairy, and do your research!

xx              

Day 26

Shane is now connected to his pump. Today he had a PICC line put in, much more successfully than last time!

He will be connected to this pump until Friday, which we thought was the last day of this treatment, but today he discovered that this may not be the case.

If you remember the treatment is for the Cytomegalo virus, the treatment is will cease when blood tests show no active virus. That could be another three weeks away!


Life connected to the pump is a pain in the butt. This bag has to go everywhere, even to the bathroom in the middle of the night. It has to remain hung over one shoulder when moving, and is very difficult hold it and carry a back-pack at the same time. In saying that, this is a better option than staying in hospital!

Blood tests today show that his counts have all picked up. Neuts are a very healthy 4.73!

 This is Shane with his Tech-deck skate ramp! Its a hard life!

Just a short blog tonight, as Im sure you are still processing last nights post. Thanks for all of your comments. This blog is a big commitment for me to write each day so I really appreciate your feedback.

xx

Day 25

We are now one quarter of the way through! Only 75 more days to go! 

Today has been very mild. I went to work, and Shane stayed at home with Kerry and ran some errands. 

No Doctors, no stress, just the simple life! Very nice. 

Then this afternoon I received a phone call from a friend who has just started this journey as a carer. Today they had some news that was hard to hear. She asked for my advice about how to mentally handle these situations. I have been pondering this all afternoon and thought I would put in writing for everyone. 

Now just remember, these are my private thoughts that run through my head, and these are some strategies that help me cope with the situation. They may seem ridiculous to you, but they work a treat for me. Most of these things I haven't shared with anyone, so, I hope you appreciate this insight! 

1. I find mindful practice really helps. It focus's your mind on the present moment and stops you from worrying about what may come. Its easier to focus on being practical and what you need to do to get yourself / loved ones through the day. 

2. Whenever I have thoughts about Shane passing away, I turn it into something comical which is very difficult to do. For example: I bring a picture up in my mind of us in old age, nagging at each other with grandpa Shane saying to me "Quit planning my funeral woman!".  

3. Breathe. No matter how scared you are. 

4. Do / listen / watch things that make you happy. 

5. Be grateful for each moment you have together, and for the work others do to help you.

6. This one is the hardest to get your head around, but probably the one most needed in these situations. Learn to accept that all animals die, and we humans are no exception. Some earlier than others admittedly. Be at peace with the possibility of a loved one passing. This takes the extreme fear out of the situation. Whatever happens, happens and we have no control over that, how we live is the only thing we can control. 

xx

Day 24 Special Guest Blogger

Hi Everyone,

Im having a night off Blogging! So I thought I would bring in a special guest to cover for me. You may have been anticipating this moment or this may come as a nice surprise - Mr Shane Prosser himself is my guest blogger. Enjoy!

Kelly

I'd like to start by saying a big thank you to everyone who has given their support and well wishes, and also those who enjoy reading this blog. The biggest thank you has to go to my lovely wife who tells me everyday that I'm amazing!

Tonight I would like to talk about how I'm feeling both physically and mentally since leaving hospital. We'll start with mentally.

Its amazing! You have no idea how fantastic it feels to not be locked in a room all the time. Just to feel the breeze and changes in temperature does so much for the soul. As far as emotions are concerned, Im not sure whether its just being out, or whether it has to do with some of the drugs I am on, but I cry for no reason. Even today, we dropped by to see Kell's brother in his new house and he gave me a hug, and I started to cry. Even writing this right now Im tearing up and its really odd. Its not that Im sad, and its not that Im happy, its just everything comes to the surface. So if I see you and start crying, don't think you're special:)

Another huge part of the emotions is definitely being able to spend time with my wife, uninterrupted by doctors, nurses and the contact precautions (gowns and gloves) which had to be adhered to in hospital. And God its nice not to have blue hugs (sad, goodbye hugs)!

I think tomorrow might be a little tough emotionally as I have spent the last three days with the woman of my dreams, and tomorrow, she has to go back to work. But at least tomorrow I'll have my other woman with me, Mumsy!

Physically, Im finding it a little tough at the moment. I'm down to 77kgs and a size 32 pants with a belt. Before my replapse I was about 93kgs of pure beef-cake and a solid 34. Now my legs look like my wrists, and my arms look like they did when I was 17. I have hardly any hair on my body whatsoever! But at least I still have eyebrows and eyelashes, both of which disappeared last time. Because of the GVHD, my skin is peeling off my shoulders, chest and back, but Kell says that all my skin is very smooth and feels like a baby, so I suppose thats a good thing?

I'm struggling with eating as most foods have no taste, even very strong ones don't taste strong at all. It makes it very hard to eat when something doesn't taste nice. I even bought a packet of chicken twisties, but could not taste a thing. Yet, I can still smell, which makes things even more frustrating! Unfortunately, the things that do have some taste are not very good for me. Soft drink tastes good (I think its the bubbles), strawberry milk and some soups. Although, today at Michael's I had some pork ribs which apparently were very strong in flavour, and I could taste them just a little. Its nice to eat some meat!

Partially because of the not eating, mostly because of the no moving, I'm finding it very difficult at the moment with energy, and also the fact that my steroid dose got dropped on friday. Each time I drop the steroids, I get a bit of a come down, so at least they didn't drop them all the way to zero straight away. The doctors have said that they will reduce the steroid dose most weeks until Im off them completely. Today I had to go to the grocery store, and the only way I could make it around for the few items we needed, was I had to push the trolley so I had something to lean on. When we got home I unpacked the groceries, and collapsed on the couch for a while. Thats a bit of an example of how my energy is at the moment.

I've started making plans of things to keep me occupied, that I can do at home, without spending too much money, as its going to be a while before I can work again. Im going to let you all know what they are so you can keep an eye on me and make sure I follow through with them.
1. I have a really cool, old, low-rider push bike that I am about to restore and modify a little (see picture below).
2. I have two book shelves / display units to be sanded and restored.
3. Another cabinet that our birdies sit on that also needs some attention.
4. A shed to clear out.


That is about all I have plans for at the moment other than putting on some weight and getting some muscle back, and in turn having a lot more energy. I think this is where I'll leave it tonight. I just want to finish with another big thank you to everyone.

Peace out!

Day 23

What a wonderful day today has been! It was just so amazing to spend the night cuddled next to my hubby. The weather God was good to us this morning by gracing us with some beautiful rain while we were sleeping in and afterwards, Shane cooked me pancakes! What a man! 

We did wake up at 6am and at that time, Shane decided to get his "chat" on. When he's on steroids, there are many moments when he can't sleep, and he just endlessly talks about stuff. There is no holding him back right now. There is so much to live for! He has so many wonderful ideas and is so keen to put them into action. By 6.30am he had our day planned and I was asleep again.

By the time we were up at 9am, it was a very different story. 

Yesterday they reduced Shane's steroid, Prednisolone, by 50mg - a whopping great big dose. He's now still on 120mg a day, but such a change really takes it out of Shane. He becomes so fatigued even the thought of getting off the lounge to go to the bathroom seems impossible. He really needs to be supported during these days as he's just too tired to really care for himself. He has learned to preserve energy while doing things like showering by sitting down, but its still exhausting. 

So our plans went out the window. I was expecting this result today, so I was happy to just play it all by ear. Tomorrow I am sure will be much the same. I can't tell you how disappointed Shane gets on these days:( 

Getting home last night was interesting. After the stress of the afternoon, we both felt a bit out of sorts, but so relieved with the outcome. Then last night I had the fun job of sorting out Shane's medications! This is one of the most challenging parts of returning home. There is a huge list of medications that need to be taken at certain times, with or without food. For some meds we have to set alarms for to ensure they are taken at the right time. 

But of course this isn't the first time Shane has been discharged from hospital, and each time they give us all the meds he needs. Some are the same as previous discharges, others a very different. So last night I had the fun job of sorting out all of the new and older meds to ensure he's on the right doses for now, but finishing up the older meds before opening new packets. I almost need a medical degree (or should be given one for recognition of prior learning!) to sort out this lot! 

Medications are one of our biggest expenses. They cost us a small fortune. Last year fortunately we reached the safety net limit which means we got a pension rate for medications, but as we're in the new year, we start all over again. Fortunately for us, Queensland Health subsidise some medications, so we don't pay as much as they are worth. This is such a relief as I have no idea how we would pay for it all otherwise. Here is a copy of the list of Medications Shane took home with him. I am surprised he can fit food in as well as all these pills!

So now we just settle into our routine and gradually build up Shane's fitness and body weight. He is able to eat more food as we're finding some things don't taste so bad. So far we have found that pumpkin, broccoli, fanta and strawberry milk are ok. I just have to make sure that he doesn't get sick of them being on regular rotation!

xx

Day 22 - home sweet home, maybe

So, I really wasn't lying when I said this certainly a roller coaster ride!

Today was sailing smoothly. The doctors said Shane was all good to go. We had organised discharge meds to be done the day before (as these often take ages), Shaney was all packed and ready to go. He just needed his PICC line put in, and he needed to be connected to a CAD pump to administer the gancyclovir (CMV treatment) twice a day until Tuesday when he returns to the RBH for a check up.

Shane was due to have his PICC line done at 1pm in medical imaging and true to Hospital Time, he went down just before 2pm. An hour and a half later he returns with his new PICC exclaiming that they were working on him that whole time. The medical imaging team had a tough time getting the tube the 32cm required as it kept getting hooked at 16cm. They got it there in the end.

So finally we grabbed our gear and headed down to level 4 Outpatients to have the pump connected. The medication was all good to go, the nurses were all dressed in their cytotoxic gear and the pump was connected to the bag of fluids. Before hooking up any medication to any line, nurses always bleed approx 10mLs to avoid a "toxic shower" (very bad) of infections possibly living in the line. This is standard practice across the board when working with permanent lines. Then once they bleed the line, they flush it with saline solution to clear it out, then hook up the medication.

So, today when the nurse flushed the line, Shane's bandage filled up with bloody fluid (and squirted out some)! The nurse couldn't believe it! She walked away for a minute, then came back and said "I don't believe that really happened, I have to try again". The same thing happened.

There was a hole in Shane's line near to the entry site! It meant that they were unable to hook Shane up to the gancyclovir to go home. It could cause all sorts of serious problems - including toxic burns on Shane's skin.

This is when Shane tells us that the people who did the bandages stuffed it up, THEN USED A SCAPEL to get it off the line! Now, my New Years resolution is to not complain, but this moment really challenged this resolution! The nick was 1cm long! You should have seen the team of angry people who made their way in soon afterwards! Then there was discussions about what to do next. One of the nurses phoned the doctor, who said "He'll just have to stay" - the nurse looked at Shane and said "good luck keeping him here!"

After much deliberation they took the PICC out (shortest time in history), gave him a stat dose of the gancyclovir through his cannula, and arranged oral medications for the weekend (how simple is that?). 

PHEW!

That was a close call.

We are now Home Sweet Home!

Days 20-21

One more sleep...

Hopefully!

This week has been really nice. Shane has been able to have a pass out each day. It has made life much easier to come home after work, eat dinner, then heartbreakingly take him back to hospital each night. It has also been a great gauge of how Shane is coping being self sufficient, and so far so good.

Since starting his gancyclovir, we have seen a wonderful improvement. His energy is improving, he's able to keep food down (thanks to his anti-nausea medications), he is eating and drinking more, and starting to become more active. The last two nights he has dried the dishes for me. Yesterday afternoon we went for a walk along the waterfront. We walked 800m in about 16min with a rest break halfway. Shane was really puffing by the end of it.

Now that Shane is no longer on IV fluids, we are starting to get an idea of his real conditioning. He has has lost approx 6kgs and he's struggling to keep his pants up! Each time he's unwell, I buy him new pants to fit him but he grows out of them pretty quickly! Then we have to find these small pants again! I have refused to buy more this time - "just eat more honey!" or find old pants that fit! He has also lost a lot of muscle tone and is looking very skinny around the face, but we have seen him worse off.

Tomorrow he has his PICC line put into his arm, and he's dose of steroids will be tapered down. Can you believe he's been on this dose of steroids for two weeks already. The plan is to gradually reduce his steroids each week until he's no longer on them, then gradually reduce his immunosuppresant over the next nine months or so. Eventually he will no longer require them depending on GVHD symptoms. Ultimately we don't want the immune system suppressed forever as this will reduce its ability to detect cancer cells. Speaking of which, these are the Leukaemic cells:

Its so hard to stay angry at such pretty purple things...

Mmmm, one more sleep xx

Day 19

Shane has been much better today. Since starting his Gancyclovir last night he has been much better. I even got a smile from him today! It was so nice to see! Each day I remind him how amazing he is. Most days he has no trouble agreeing with me, but yesterday, he didn't believe a word I said. The change in his mood is so much better. Its just amazing to see these changes and how fast they happen! 

Today Shane had his Hickman line taken out, and a temporary cannula put in his arm instead. The CMV treatment will last for 5 days which means his discharge day will be on Friday. He should be on top of the world by then! He will have a PICC line (more permanent then the cannula) put in his upper arm on friday prior to coming home. 

As this new treatment is only done twice a day, and just about all other treatments are now finished, he was able to enjoy another day at home! I don't think I could ever get too many cuddles! We were well prepared for dinner tonight, complete with an entree of anti-nausea medication! It worked beautifully! 

Bloods are continuing to improve as well as blood sugar levels - no insulin required today! 

Last night I blogged about cytotoxic precautions. When someone is on chemotherapy they are considered "cytotoxic". This means they are toxic to others if they come into contact with body fluids. So special precautions are needed such as personal protective wear when cleaning up spills etc. The nurses take it very seriously as they are exposed to it regularly, and need to minimise any splashing of cytotoxic spills. Exposure to such chemicals can cause cancer itself! Patients are considered cytotoxic until after seven days since their last treatment. This affects me as I am exposed to moments like last night's spew, and even excessive sweat. Shane's clothes also need to be specially washed separately. This is the first time they have used an anti-viral medication, that is cytotoxic!

This is Shaney snuggled up under our special blankey on a mattress on the floor. So comfy!!! Hopefully we'll have another few more day passes this week before discharge! 

Good night xx

Day 18

Well today Shaney finally got to come home for the day! It was a moment he had been impatiently waiting for with a hope to have a cuddle on the lounge. The only problem was, I had to work:(

So I managed to organise with the nurses last night to have his Tacro (previously cyclosporin or immunosuppresant) put through early in the morning (it usually goes through over 8-10hrs) so it would be completed by lunchtime. Kerry, Shane's mum, was there by lunch ready to bring him home for the day.

By the time I got home, Shane was bored! He had already enjoyed a bath and the lounge, and that only left some cuddling on his list.

Cuddling on the lounge was sooooooooooo nice. I miss his hugs so much as well as the ability to touch him with my bare hands (if you remember I always have to wear gloves when in his room). If you're not in the habit of practicing gratitude, the ability unconditionally hug your loved ones is something that shouldn't be taken for granted.

After a quick cuddle, I dished him up some dinner, only to have him vomit it back up again, as well as just about everything that he had eaten today. Do you remember how I said that I was no longer a sympathy spewer? Well, today really challenged that constitution. I was only half way through my meal and it took all my strength to finish it!

It was so nice be be home in the afternoon watching my birdies getting settled for the night, and feeling the breeze flow through the house. You are so insulated from the outside world while in hospital, you forget what outside life feels like.

After another snuggle, it was time to head back to hospital. I can't tell you how hard it is to get up and go, and how tempting it is to go anywhere else but hospital. We stayed our course.

Upon arrival back at the hospital, the nurses had some more bad news for us. A blood test today revealed the reactivation of the cytomegalovirus (CMV). CMV is a virus that 80% of Australian's have had, and both Shane and his donor were positive for CMV. This was one of the reasons this donor in particular was chosen. CMV can lay dormant in the body, and its only a situation like this that can cause it to reactivate. Symptoms of this virus include fatigue and cold and flu like symptoms. This explains why Shane has been so strange the last few days. He's been so fatigued and emotional, and this could all be related to CMV. This also means he now starts a new medication (another one) called Gancyclovir. This medication is also cytotoxic and needs to be treated with special care, as evidenced below:

  The first few days of treating CMV requires IV treatment. The nurses said that Shane could go home with a CAD pump (to administer the treatment overnight at home), but the issue his the Doctors want Shane to have his Hickman line out prior to his leaving hospital. This is due to the bugs found over the last few weeks. They were planning on putting in a PICC line (in his arm) a few days after discharge to give the body time to remove the bugs, before putting in a new line. 

So, today the Doctors were discussing discharge for tomorrow, however, I don't think that will be likely. Not only that, but I wore a low neck shirt this afternoon and Shaney didn't even notice. He's so not ready to come home yet! 

xx

Day 17

Today has been a much better day! Shane has been feeling much better overall even if he is still a little emotional. I think it has been a better day because food is starting regain some of its taste!

A magical pumpkins soup worked a treat today thank you to Lindsay and Kent!

We were hoping today for a day pass out of here, but the request was unfortunately rejected. Which is fair enough after yesterday being such a crappy day. However, preparations are being made for discharge soon. One of the amazing nurses just spent the last 40mins educating us about what to be aware of when leaving hospital. The list is pretty full on, but much of it we have done before. What makes it more complex this time is GVHD and things to be looking for. GVHD can have deadly consequences so its really important to act quickly when needed.  

Shane is now off his TPN (nutrition) and is steadily consuming his meds in tablet form instead of IV. In  the last few days Shane has experienced what is called steriod-induced diabetes. When you combine both high dose steroids and TPN it a recipe for diabetes. We have seen his blood sugar readings above 20 (normal rage 6-10). Short acting insulin was started last week, but today they started long acting insulin in addition. Now the TPN has been ceased, his blood sugar levels should start to improve, but it is likely he will need to continue the insulin when he returns home.  

We thoroughly enjoyed a game of Yatzee with Kyle, Lissy and Jenga. There is nothing like Yatzee to get the endorphins going and to have a good laugh! And yes, the Yatzee Queen was back in fine form!

Tomorrow will hopefully see Shane come home for the afternoon. He has a date with the Lounge!

xx

Day 16

Today has not been much fun to say the least. Shaney has been feeling really lethargic today and with fatigue like this, he becomes very emotional. He has held it together for so long it has been amazing, but today has really tested his spirits.

The doctors have turned down his TPN (nutrition) from 90 on Thursday, to 60 yesterday and now to 40 today. So he's now on less than half, but the problem is eating. Due to the radiation Shane's tastes buds have changed, and foods he would ordinarily enjoy, now taste awful. Many foods are simply unbearable, and the rest, are only marginally bearable. I can't imagine a life where food tastes bad!

To add insult to injury, Shane's tummy is unable to hold down much food, or its processing it too quickly. A condition called refeeding syndrome. He has now been put on a lactose free diet, and a sample has been sent for investigations to ensure its not GVHD of the gut or another bug.

In the mean time we wait and perservere.

His blood counts today are: WBCs - 3.1, Neuts 2.54.

All else is continuing to improve.

Last night Shane named his new immune system - "Leaping Leroy Loggins". Aptly named after a famous basketballer. I tell Shane that both he and Leroy need to behave themselves!

Leroy is doing a wonderful job!  

xx

Day 15

Welcome to the roller coaster ride that is cancer. It is ride involving very extreme highs, followed by very extreme lows. Today is certainly no exception.

You may have noticed in the pictures from last night's blog that I was wearing gloves and a gown. This is because Shane is on contact precautions due to a bug he had last year which was resistant to one type of antibiotics. It means he is on contact precautions for six months to ensure the bug is completely gone.

Today Shane was diagnosed with vancomycin resistant enterococcus (VRE) which is a contagious bug that is resistant to vancomycin - a first line antibiotic used to treat infections. This means that Shane will be on contact precautions for-e-ver. Shane has now become the social outcast of the Haemotology world which is similar to being a smoker in the fresh air revolution. This means that he is not allowed in communal areas on the ward (including tea room), visitors will always have to wear gowns and gloves, he will always have a room to himself (which is not necessarily a bad thing), and he will have to go to a special VRE section of the Day unit. Apparently there has been an outbreak of this bug around the ward.

When in the outside world, this bug doesn't mean anything. It doesn't affect Shane unless it makes its way into his blood and he will need other antibiotics when being treated for infections. However, when you spend so much time in hospital, little luxuries such as the tea room provides a nice break from the monotony of the room and bed. Its nice to sit as a family to enjoy dinner, or to have a snuggle on the lounge and watch TV afterwards. There are visitor restriction on this ward, so only two people can be in Shane's room at any one time. What do we do when Simon, Kerry and I are all here to visit? The truth is, we just quietly break the rules (Shhh!).

In the same day Shane is no longer neutropaenic, he is endeavouring to eat more, his liver and lung functions are fine, skin is even better than yesterday, he's been for a couple of walks, and he's starting to have his meds given as tablets. The doctors have also started discussing their plans to SEND HIM HOME!!!

YEW! xx