Monday, March 28, 2011

Day + 108 - Home sweet home

It is so nice being home and we have just been enjoying quality family time, hence posting on the blog has fallen behind! Sorry, sorry, sorry!

What have we been up to?? Adam has been enjoying getting back into some normal activities, like his usual household jobs, such as emptying the recycling, setting the table and emptying the dishwasher. This has been great for smooth family dynamics and nice to see Adam coming out of 'patient' mode. We have been on a family bike ride every saturday, not a long way, but a good ride. Adam has managed these well and we have all enjoyed getting out and about together. It is easier for Adam to ride than to walk, as you can ride sitting down!!! School work is back on the agenda a bit more consistently, with work from the hospital school and soon some work from Adam's class this year. It all takes a bit of time to get organised and into a routine.

We have had a few visitors too, which has been fun. Adam is itching for more visitors, but we are a bit tentative, understandably, and want to spend quality time with those people who can visit. Slowly, slowly and lots of patience required.

We have enjoyed getting back to our usual 'homely' clinic at the hospital and catching up with all the fantastic staff and our wonderful specialist. Generally, things continue to go well with Adam's progress. The steroids are slowly bing decreased, so soon (in a couple of weeks) the immune suppressing drugs can be decreased also and we can move towards the 'non-isolation' phase. His liver, chest/lungs and skin are behaving. We are praying for this to continue, so the above transition runs smoothly. Decreasing the steroids will be helpful for the family food budget too!

It is nice to be home for so many reasons. The dog is enjoying having Adam home as well !!!

Thanks for your thoughts, prayers and well wishes, keep them coming. I will try and post more often!!!!
Love the McAllisters

Tuesday, March 15, 2011

Day + 95 and HOME !!

As some of you probably already know Adam and Marian came home last Tuesday the 8th of March. We did have some indication that this might happen, but were not sure for certain until the day before. We had flexible flights so could have changed them right up to a 1/2 hour before the flight. Thankfully this was not necessary as the team in Sydney decided that, as his liver enzymes were slowly heading in the right direction and his chest/lung complications could be monitored just as well at the W&Ch, we could be looked after successfully in Adelaide for the rest of Adam's post transplant treatment. Even though we are home Adam still needs to go to the clinic 3 times per week and is still in isolation (meaning he can not go to any inside public places without a face mask and we need to generally avoid crowded places, outside and in, and contact with anyone that is unwell). So we will not be throwing a party just yet, but have managed to see some well family members.

It is wonderful to be together again as a family and share more normally the family responsibilities. Darren did a fantastic job keeping on top of things for Matthew and Alexander, and although they were very pleased and excited to see Mum and Adam, they were also both very calm and collected about it. Adam is itching to get back to school and church and normal interaction with the outside world, but we are not quite there yet. Although we are fast approaching +100 days, we are still on steroids and not looking at decreasing the anti-rejection drugs just yet, so are expecting to be in isolation for a bit longer.

As always we are very appreciative of everyones thoughts and prayers, and even although we are home, the journey is not over yet, and we continue to need your support, and we will continue to update the blog!
Love Marian, Darren, Adam, Matthew and Alexander

Sunday, March 6, 2011

Day +86 and keeping positive

Just a quick update. We have had a busy and lovely weekend catching up with my cousins that live in Sydney and some other transplant recipients we have developed a friendship with. I have also been getting more familiar with Centennial park and Queens park, for exercise purposes!

Last week was quite a busy one too as we had to move out of our lovely appartment in Coogee beach on Thursday into The Centre (the accomodation that we stayed in the first weekend we came to Sydney). It is quite comfortable and serving us well for now. Adam had more tests through the week and his liver enzymes are finally starting to very slowly decrease and some decisions were made about his unsettled chest. It looks like we may be able to think about coming home soon, which would be great.

Darren and the boys had a busy week too and seem to still be coping famously at home. The continued support from family and our church family has helped a lot. We are so thankful for all the prayers and practical support from so many, thank you all.

Hope to have more good news soon.
Marian and Adam and the crew from home.

Sunday, February 27, 2011

Day +79 and alot brighter

Why am I brighter ??? Well I would like to say it is because we have a date to go home, but unfortunately no, but the next best thing. On Friday night Adam and I got a surprise visitor at our door ........

It was the best surprise ever, just what I needed to regain some strength to see through the rest of our time here in Sydney. This came on top of some good news on Friday from the specialists in the hospital re Adam's chest. It looks like he has just got some asthma in response to whatever viral infection he may have had a few weeks ago. So there is nothing more sinister going in his chest, which is great news.

We had a lovely weekend with Darren. We finished another, much easier, puzzle and visited Watson's Bay, again (we love it!) and even managed to go out for dinner at a nice restaurant with an outdoor dining area at Coogee (Adam's highlight for the weekend).

Adam's liver enzymes remain a concern, but maybe with the chest resolved we are a bit closer to being able to come home???
Thanks for your continued prayers they really help.
Marian and Co.

Thursday, February 24, 2011

Day +76 and dreaming of home.

Well, making the most of it is wearing a bit thin!!! I think we have seen enough now and would like to come home!!! However, apparently Adam's liver and chest want to be here a bit longer and he unfortunately has no control over them!

We have had some nice days since the last blog though ,as one of my good friends came to stay with us last weekend, which helped to fill our days and gave us the opportunity to revisit some favourite spots along the coast. She also helped us finish the 1000 piece puzzle we started the other week (see below). It was also great for me to have some one to 'girl chat' with and clothes shop with !!! Just as well there are not too many clothes shops on Coogee Bay road.

However, days at the clinic have been rather long as we are now waiting on liver enzyme tests each day we go in, as these are not right. They are not seriously high, but we are praying for them to go back to normal. Adam has also got a persistent cough that has been causing us all a bit of grief. He is not feeling unwell, but the cough is not going away. This has resulted in an over night stay in emergency, and some other investigative tests, some of which we are yet to have. These are the things keeping us here.

Adam in clinic isolation room being a bit silly !

On the home front Darren is doing a fantastic job keeping Matthew and Alexander organised and they seem to be managing ok, but are also counting down the days to our return (although we are not sure when that will actually be!)
So please keep praying for some resolving of these issues as they are beginning to worry me!
Love Marian and Adam and the home crew

Tuesday, February 15, 2011

Day +67 and chugging along

Things are going ok here in Sydney and at home in Adelaide. Darren is doing a marvelous job managing home life and Alexander and Matthews routine. He is also getting lots of wonderful support from our family and church family, which is helping things run smoothly. Matthew is doing a smashing job of getting up and going off in the morning and seems to be doing ok at school so far. Alexander is loving being back at school, although he is getting very tired, as expected at the beginning of the year.
Adam and I are ok and are still not sure how much longer we will be here, so are making the most of it, finding some new places to visit. We have been to Watson's Bay twice in the past week and drove around Rose Bay and Double Bay also. Watson's Bay is gorgeous.

Our exciting news is that on Friday the OT department at the hospital loaned us a wheelchair for Adam. This is great, because although Adam can walk around ok he can't walk far, so now we can walk around together and Adam can see more and have the energy to appreciate it. We have been on walks most days, around Coogee to the bits you can only walk to and around Watson's Bay. We have more adventures on the agenda too.
My brother also arrived to attend some meetings for work on Sunday night and we have enjoyed his company the last few nights, he is leaving tomorrow afternoon. Adam seems to be a bit better the last few days as his temperature has gone completely back to normal and appetite has picked up again, maybe the extra fresh air is doing him good.

Thanks for your continued prayers and support, keep it coming, it definately helps to keep our spirits up.

Love Marian and Adam the crew at home.

Tuesday, February 8, 2011

All ok just busy - day + 60

Sorry for not posting for a while, but the last week or so has been very busy. Quite a few things have happened, but thankfully nothing too dramatic or unexpected. We spent the beginning of last week making the most of the our last few days together, (except Matt of course) having breakfast at a cafe in Bondi and time at the beach in the hot weather. The only hiccup was that Adam developed a mild cough and temperature, which peeked on Thursday night and he was admitted for antibiotics. Thankfully, there were no bugs found in his system, and his temperature came down quickly, so he was discharged midday Sunday. He actually felt ok the whole time and kept saying he was fine. He is doing ok just still extremely tired and physically exhausted, which is all to be expected.

Darren and Alexander flew back to Adelaide on Friday afternoon and I picked up my wonderful sister-in-law Carolyn, at the same time, who spent a few days with us. Once Adam was out of hospital again, and the weather cooled down, we did some drives and a bit of walking to check out the beautiful local scenery.

So it's just Adam and I now until they have done everything they can for us and then we might be able to come home. No idea when that might be at the moment, so we will continue to make the most of things here, trying to keep a far away track on all the business of the rest of the family at home. Thankfully Matthew is going ok at high school so far and Alex was very excited to get back to school yesterday (and so was Dad, he was driving us crazy!!!).
So please keep praying and sending all those positive thoughts so we can all hang in there.

Sunday, January 30, 2011

Day + 51 _ Just like a chocolate milkshake....

It has been sometime since we updated this blog. Thankfully all for the right reasons.

We have been busy being a family in Sydney doing zoo visits and getting to the beach in between visits to the hospital and other exercising activities.
This week was Australia Day and besides the huge crowds, noise and a 20th wedding anniversary we have had a good un-eventful time with Adam. We have had to spend some extra time at the hospital this week due to the short week and waiting for medications to be made by pharmacy. His blood results continue to be good and on track.
We did receive some disappointing news early in the week regarding some testing done before we came to Sydney. We had already learned, just before starting the transplant process in Sydney, that these tests done during the pretreatment process needed to be repeated as they had not been strictly accurate. We could not wait for the tests to be done at the time as they take some weeks. As we have discovered this week these tests came back positive where as they were negative before and positive is not actually the result you want! Thats science for you! What this means ultimately we do not know, but it does mean we need all the prayers to continue for the current balancing of the graft vs host reaction to do its job eliminating all the remaining leukaemia so that cure is still a possibility.
All this has no immediate effect on Adam's treatment except the doctors are trying even more to optimise the graft vs host reaction. So Adam has continued to be quite well and bright and slowly on the mend physically.
We did send Matthew home today to start school on Tuesday and are making plans for Darren and Alexander to return home soon.
Thanks for your continued prayers they are really vital to Adam's recovery and to us as a family.

Friday, January 21, 2011

Day +42 and been to the zoo!!! (that rhymes if u didn't notice!)

Well, thankfully (and we are very thankful!), things are going along in a very stable manner.
Adam visited the clinic again today for his IV treatment to protect against CMV infection. CMV stands for Cyto-Megalo-Virus, which is an extremely common virus that most of us are infected with, but that our bodies then ensure (mostly) never bothers us again, even though it doesn't actually leave our body (like chicken pox and herpes never leave either). CMV is normally not an issue, unless you have your immune system eradicated and are given a new immune system that is too immature to cope with the virus, especially if it decides to come out and have a party..... as is the case for Adam (hopefully without the party bit!). So to keep this party at bay Adam has 3 IV treatments per week and one IV immunoglobulin treatment per week.
They did not need to check any other blood components today as these were all looking good on Wednesday and his graft vs host rash looked stable.
So that's the technical bit dealt with..... what else have we been up to?
Well yesterday we had a lovely day. A nice sleep in to start with, followed by a relatively short but enjoyable trip to the zoo and then a slow walk around Manly and dinner in a very outside, relatively unpopulated, dining area.
The zoo was great and it was lovely to see the new elephants. We saw the baby, unfortunately not really close up, but we got a great show from the two other young elephants as they were having great fun together. Reminded me of the puppies at the dog park actually!
Today, after clinic, later in the afternoon, Adam announced that he wanted to go to the beach. So we covered him from tip to toe with clothes,hat and sunscreen (even though it was late in afternoon, need to be careful) and managed to find a quiet spot at the end of the beach. Quite an achievement at Coogee beach in January (as you can see below)!

He had a lovely time, watching the surf and directing the sandcastle building (you can imagine can't you?). We finished off with an icecream on the way home, from the lovely lady on the corner who now knows us all by name!!!
Love the McAllisters who appreciate your continued prayers for stability.

Wednesday, January 19, 2011

Day +40....SUBWAY's happy

Yesterday Adam ate SUBWAY for the first time in 8 weeks! A reasonably long time by Adam's standards. I am sure the rest of us would cope, but that isn't the point. The best bit is, it tasted as good as expected, really good considering the blast the taste buds have had, they have obviously recovered well.

We had another outpatient visit today, with everything checking out ok. His blood counts were not quite as high as Monday, but still fine. So all stable for the time being.
We ventured into Centennial Park yesterday for a while and this afternoon down to Brighton LeSands and around to the south side of Botany Bay to check it out. It reminded us of Goolwa. Might go back another day to investigate the National Park.
Adam seems to be getting slightly brighter each day, or maybe it is just the SUBWAY!
Thanks as always for your continued love and prayers.

Monday, January 17, 2011

Day +38, only one day until SUBWAY!

Thankfully things are still going ok. Adam had another outpatient visit that went quite efficiently today. He only needed one of his preventative treatments, IV, because his blood counts, particularly platelets and haemoglobin were all looking nice today. His platelets had increased since last Wednesday, which is fantastic, and hopefully indicates that he may now be making his own platelets. We will have to wait a bit to see whether the red cells continue to hold on their own. His white cell count and neutraphil count had also increased, which was cool too.
Adam has also been a bit brighter for the last couple of days and although he is still very lethargic he is a little less 'flat' ....... if that makes sense. Thankfully his temperature has remained stable, and his blood results today indicate that his drinking is still serving him well, as his renal function indicators are ok.

But what Adam is most excited about is that our oncology consultant has said he can stop the 'clean diet' a day early, at day +39 instead of +40. This means that he can have SUBWAY, which for Adam is very exciting. He has been hanging out big time. The 'clean diet' is a low bacteria diet, similar to the Low Listeria diet pregnant women should follow. There are a few of Adams favourite foods on the list, obviously SUBWAY (which needed to be avoided due to the precooked chicken and salad bar aspect), but also Camembert, pate and sushi. We may wait a few more days for the others, but we will not get away with not having SUBWAY for lunch tomorrow!!!
On the weekend we did some serious sleeping in and Darren, Marian, Matthew and Alexander (at various times and not all together) made good use of the warm weather and headed to the beach and local bath to swim, baby surf and snorkel. We also managed to get out Saturday night for some pizza in the park. Adam even took a little walk to the beach front late this afternoon as the weather had cooled significantly and the crowds with it. The waves were certainly pretty impressive today and we did not spend much time in them, too big and nasty, not fun.

We are taking each day in our stride. We have said it before but we do really appreciate your prayers and ongoing love. Thank you.

Marian, Darren, Matthew, Adam and Alexander

Friday, January 14, 2011

Day + 35 and still ok

Another couple of days down and things staying stable.
Adam had another outpatient visit today, which was a bit quicker as he only needed one thing IV. They didn't take total blood cell counts today, as they were all pretty good the other day. This is the first time in a while that we have no counts to put on our chart. However, we are not complaining as there is no point measuring something if it is not needed.
They did measure his kidney function, which was improved, so he is doing a good job with his fluid intake. He is pretty tired and weiry today, but he will have days where he is more washed out. Getting a little more sleep over the weekend will help. I guess this is one of the most notable differences with his wellbeing, this time, compared to past treatments, is that he is so fatigued. He can only walk very short distances and even sitting up on a normal chair for very long is hard work. This is persisting and fairly unchanged over the last few weeks. I am sure it is normal, if you are a transplant patient, and will not go on forever, but is quite a change for him.
Yesterday we did manage to get out and about down to look at Le Perouse on the north side of Botany Bay. It was very nice to have a look around and there were relatively few people around and quite cloudy, with intermittent rain, so quite a good spot to take a boy still in isolation and needing to avoid the sun!
Matthew, Alexander and I investigated some more of the local baths this afternoon, which was interesting. They definately like modifying the sea landscape on the Sydney coast to maximise swimming potential as the beaches spread is fairly limited.
We are looking forward to two days of freedom over the weekend, as we do not need to visit the hospital until Adams outpatient appointment on Monday. We are praying for a stable weekend and no temperatures!!!!

Wednesday, January 12, 2011

Day +33 and still an outpatient

Adam had his first outpatient visit today, which went quite well. His blood cells are all doing the right thing and he didn't need any blood products today and probably wont until next week. Our Sydney consultant lowered his steriod dose a little on Monday and accordingly he has a bit more skin redness associated with the graft vs host (gvh) today. As this is what we want to happen, it is ok. As mentioned previously, it is all a bit of a balancing act, managing the gvh to try and ensure any last leukamia cells are eliminated, but not getting too much which could be damaging to his body. The good thing so far, with the gvh, is that it doesn't really bother him at all, which is nice for a change.

Adam is needing to continue to maintain a good fluid intake to look after his kidney's, which suffer a bit with the cyclosporin (immune suppression medication). He is doing really well with this, getting in about 1.7 L per day. Pretty good when you are not running around and generating a thirst. Finding new things to drink when you don't have a sweet tooth is a bit of a challenge though!

We had a nice 'free day' yesterday, all managing a sleep in, even Alex. Adam, Darren and Alex hung out at 'home' having a pj day. Matthew and mum went for a walk north along the sea/cliff face walkway, from Coogee to Bronte, had some sustenance and walked back. Our only mistake was not putting on any sunscreen, very naughty, we were mostly covered with clothes and hats, but our necks and faces suffered. The overcast day and threat of rain gave mum a false sense of security....... wont do that again in a hurry.
This afternoon we checked out the beach again, taking it in turns (someone staying with Adam) to brave the waves and investigated the natural baths on the north side of Coogee Beach, lots of fun but cold!
Thanks for your continued thoughts and prayers they are very felt and appreciated.

Lots of love us

Monday, January 10, 2011

Day + 31 and Discharged, Freedom....sort of!

After being allowed afternoon and night leave for the last few days we were discharged properly today. Very exciting, we are all looking forward to a sleep in tomorrow and not having to be anywhere.
There is still a long way to go yet and we will need to go to the hospital as outpatients on Mondays, Wednesdays and Friday's, until +100 days, but will enjoy sleeping under the same roof and not juggling hospital living with home living (not sure if that makes sense, some people will know what we mean!).
Adam is obviously doing well or we would not be getting out, and his blood cells are slowly getting into gear. However, the high fluid intake is still a challenge (to keep his kidneys happy), as well as the doctors balancing the graft vs host disease to try and get rid of any left over leukaemia cells. He is doing very well with his eating and thankfully his temperature is ok. This is the constant variable hanging over our heads. So prayers for his temp to stay normal to keep us out of hospital would be appreciated.
We also moved into our new temporary home here in Coogee beach yesterday. It is very nice and has enough space for all of us. It is a bit noisy, as we are very close to the beach front (& Coogee night life!), but this will have its advantages too! Plenty of places for Darren and I to go partying late at night........ if we had the inclination or the energy!!!!

Tuesday, January 4, 2011

Wow, day +26

Well things are certainly a bit busier with the kids here but good at the same time.

Adam continued to get some day leave on the 1st and 2nd of January. However, soon after he came back into hospital on sunday night (2nd) his temperature went up to 38.1. Around here, that means there could be an infection and blood cultures are taken straight away (ie they take blood straight from both lumens of his CVC line and send them to the lab to test if there are any bugs in his system) and iv anitbiotics organised, and you will be in hospital, full time, for at least the next 48 hours!!! Bye, bye day leave. Hence, sunday night we were a bit concerned and worried about what this meant, but at the same time Adam said he felt fine, so we let time tell us what was happening.
We need not have worried. Adam's temp stayed a bit high overnight, but he felt ok. When the doctors checked him out in the morning he had a more significant skin rash, indicating a graft vs host reaction. Relatively mild, but enough (also considering the temp) to treat it. As we actually want to have some graft vs host to get some graft vs leukaemia, this is all ok. Better that it happen now than having to come back into hospital once discharged.
Today there are still no positive blood cultures (ie no infection), so again, gearing up to look at more day or night leave and discharge some time soonish.
Thanks for everyones continued thoughts and prayers. We hope you are enjoying the holiday season. Yesterday a few of us managed to get into Sydney for a look around, so we are also trying to make the most of these unusual circumstances. We walked across the Harbour Bridge, the cheap way, around The Rocks, Circular Quay (some of us resisted Gelatisimo!), the Opera House and through some of the botanic gardens to look at the bats. Finished with a look at the sales and back to Randwick hospital for dinner on the balcony, felt funny actually!
Blessings to you and yours!

Saturday, January 1, 2011

New Year Happy!!

Well it's been a few days since our last update, for two main reasons!!

Our two other boys have flown in to join us..
Alex and Matthew flew in on the 29th and are now living here with us . We are really pleased that our niece has joined us as well. This allows us to be with Adam when we need to with the knowledge that they are in good hands.
We have spent alot of time with them in hospital and out.
Yesterday (last year!) we moved to the first of the two off site accomodation places we will use. The first one has a pool so the boys have been enjoying this.
Adam was allowed out of hospital on 'gate leave' last night, so we where able to bring him to the house for a BBQ as a family and then went down near to Coogee beach to watch the 9.30pm fire works. They were FANTASTIC. We found a spot a long way from the crowd (luckily) and then brought Adam back to the hospital around 2300.

Adam continues to amaze the doctors and nurses here. He is eating like a trooper and is more active than expected, although his legs are telling him about it today. We are not sure when we will be able to come out of hospital properly, as there are still a few things that need monitoring and iv support. He needs to drink a lot of fluids to keep his kidneys on track, so needs prayer support with this.

Having his brothers here has lifted his spirits (and ours), although it was hard for him to watch them swimming yesterday, when he can't... He is dying to be able to get wet properly again.

Thanks for your continued support, things slowly progressing here, still praying for no major hiccups!!!