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!!!