Day 100!

DAY 100 IS FINALLY HERE!!

It may seem to have flown by for you, but for us it has been an arduous journey!

What I am most excited about today is that I finally have Shane, The Man, back again, and by golly gosh I have missed him! For the first time in a very long time, this week Shane has shown us elements of his normal self. His personality has returned along with his sense of humour and self esteem. You don't realise how much you miss something until it comes back to you.

As a very special 100days present for both of us, we went pyjama shopping yesterday. We are now sufficiently garbed for this coming winter! It has taken me ages to actually get Shane to the shops in order to do this. Our lives have been a revolving door of hospital, work, cleaning at home, repeat. Yes, I understand that there really isn't that much more to live when you break it down, but its nice to add in some elements of fun!

So, what does 100 days mean? Well, it doesn't change that much to us day to day. When we sat down with the Doctors to decide about doing the transplant, they gave us some statistics about Shane's life. There was a decent chance he wouldn't survive past 100 days. He has clearly overcome this hurdle, so this hopefully means now he has a better chance of long term survivorship.

Next week Shane will undergo a stack of tests that were done prior to the transplant, and will be repeated again in 6-12 months time to monitor Shane's overall health. This includes a visit with the Dentist and a Dermatologist. He will also get an ECG, a gated heart scan, a chest X-ray and a Bone Marrow Aspirate. This week we also find out how well the graft has taken and Shane will get his PICC line out of his arm. Hospital visits will also drop down to once per week.

This means freedom, baby, yeah! No PICC line = swimming / surfing! Shane still needs to get a lot more strength, but this should get the ball rolling so we can be in the surf asap!

We celebrated today with a trip to the markets this morning, and joined some of our very good friends for their birthdays this evening! We had such a wonderful night with such good mates who have been there for us thick and thin. Thank so much for your support guys!

So even though we have now reached the 100 Days milestone, there are many others we are yet to achieve. So this blog will continue to keep you informed of our progress!

Thank you everyone for sharing this journey with us!

xx

Day 95

Yes, Shane is wearing undies on his head. 

You can understand the hardship we have suffered when you see this picture. We've had to create new ways of having fun and, for me, pinning Shane down while he's too weak to resist is just so much fun! Its just one strategy I've developed to help him get stronger. 

Today I was able to get him out for a walk too. We did 1.25km at a good pace which included a set of stairs. All in 20mins. He'll be sore for a few days, but you know how the first one back is always the hardest. 

This is a far cry from the weekend. 

After my last blog post, things went down hill rapidly. 

Shane's headache increase in severity and intensity. His nausea and vomiting became unbearable and from the look of him, I thought his eyeballs were going to pop out of his head. The nurses ended up calling in the night doctor to sort out some more meds as morphine alone wasn't working much. 

In the end, all this suffering came down to the IV Tacro. They had upped the dose by 20%, and given both friday's and saturday's in relatively quick succession. Shane, who already suffers a neural tremor as a result of this medication, is clearly quite sensitive to the neurotoxic effects. 

Saturday night was horrible. 

Sunday however was a different storey. In the morning Shane was improving, had energy and was hungry. The Doctors decided to go back to the pill form of Tacro and reduce the dose a bit. This was well received. 

In the end, Shane only did one poo the whole weekend. 

So the original complaint became non-existent, the medication changes made him more sick, and they didn't end up doing the scopes as clearly, there was no evidence of GVHD over the weekend. So, all in all, a complete waste of time...

So glad I didn't need that weekend to relax and recover! 

Anyways, we're very grateful to be back at home again. Ah, all is right with the world again! 

xx      

Day 93

We had an almost perfect run! Until yesterday... When we found ourselves back in our old stomping ground at 5C.

The last few days Shane has had a bit of an upset tummy. It started on Wednesday and continued Thursday and Friday. When we got to the hospital on Friday for the usual check ups, I dobbed Shane in. He wasn't feeling 100% when we first got there, but he improved throughout the day. Dr Jackson saw Shane and said to monitor it over the weekend, and come back if things don't improve. We were relieved to be going home.

That relief was short lived. The Doctor returned after a consulting with Dr Curley - they were admitting him:(

Or "committing" him according to Shane. It always feels like such a punishment. As if we have done something wrong, or we weren't careful enough about hygiene or food preparation or cleanliness. Sometimes it feels like what I do to help him is never enough. My rational mind tells me that these things can't be helped, but sometimes rational thinking does not prevail in these circumstances.

Fortunately I suspected that Shane would stay so I had packed a few essential items for him.

There are three possible causes of these "runny bums":
1. A Virus (as it hasn't yet produced a temperature so they suspect its not bacterial)
2. Medications (as each has a very long list of side effects, all of which have diarrhoea on them)
3. GVHD of the gut.

Clearly the last one is the biggest concern. That is why they don't waste time waiting. They are monitoring Shane over the weekend, changing some meds to IV, and booking him into have some "scopes" done early next week. You can only imagine what that entails!

Naturally, Shane hasn't been to the toilet since yesterday morning. The nurses are jokingly calling him a fraud. Today however, things seem to be more troublesome at the other end. He hasn't been able to keep food down all day and he has a cracker headache:(

This last week the doctors have changed a few of his medications. Apparently this can knock people around and cause lots of fun side effects like headaches. Shane's blood pressure is quite sensitive to these meds so he's been on medication for that also. Last week they changed medications to improve his Tacro (immunosuppresant) levels. Don't forget the reduction of steroids can always lead to possible GVHD.

Today's picture was taken on Tuesday when we went for our evening walk. I try to get Shane out daily, but its more like weekly when it actually happens! Some days Shane has some energy and is capable of doing things. Things like - spending all night out with the "Boys" after the footy last friday night. Leaving his wife at home worrying like crazy. By the way Boys - not happy!

I promise to keep you updated a little more regularly!

xx






 

Day 83

I shall name him sprout and keep him forever! Wow this hair took a while to start, but now its unstoppable! I came home last Thursday, and discovered a beard had grown... Overnight! 

That dirty moustachio has been creeping up for a while now! 

I wonder what we'll discover next! 

Well, day 80 came by and snuck past without us even realising. All is staying steady at this stage. Bloods are all normal, no more signs of GVHD at this stage. Steroids are down to 15mg. The Tacro (immunosuppressant) however has been bumped up heaps the last few weeks. Apparently Shane's kidneys are working really well and flushing this medication out of his system really quickly. This is great news, however the worst side effect of the Tacro is "shaking". Shane has a tremor in his hands, arms and even legs. It makes drinking a cup of tea interesting! (and maybe slightly entertaining). 

Fatigue is still an issue, but the drop in steroids is now much less than before so now the comedown afterwards isn't as severe. Motivation is also really low at the moment which is common with severe fatigue. I've been working hard trying to get Shane out for some exercise and this has had mixed success. 

Boredom is also a bit of an issue. Daytime TV easily does your head in very quickly! So, if you are in the area, or if you have some free time, please drop by to say G'day! It would be great to socialise with the outside world, outside of Facebook! 

Just a little note to say that "Thanks" is not enough when it comes to our parents. We would be lost without you! 

Peace

xx