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