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

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.

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.

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.

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.

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.

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