Wow, what a day.

We have had an AMAZING Christmas Day

To start out we had the usual visit from the doctors, and they are really happy with Adam, AND gave us the great news that Adam has officially engrafted. FANTASTIC!  His neutraphils were 0.8 and we had news, yesterday, that his CMV levels are under control, so we are really over the moon. Although we still have a long way to go, we are very thankful to have this phase complete. Thanks to everyone for your prayers and thoughts to help this phase along.

This set the scene for the rest of the day. Then we skyped our other two boys, their aunty, uncle and cousins, to watch them open presents. It was fantastic to SEE them and be a “fly on the wall”.

 

 

 

Later in the morning the ward had a visit from the wonderful Wiggles. Each year (for 18 years) they have visited the hospital and as many kids as they can on Christmas day. We had a quick song, and Jeff fell asleep… really great!

At lunch we had a fantastic meal provided by “Patsy”. She is a legend here on the ward. We had all the usual fare for Christmas lunch and plenty of it. Thanks Patsy!!

This afternoon we had some down time and Adam was able to leave his room to visit the Balcony and the adolescents room here on the ward. It has a very comfortable couch which was irresistible for a quick snooze!

We hope you managed to have a great Christmas day too!

Day + 13 and a cute video!!!

Day thirteen was a little "ground hog" dayish!!!

The doctors came in the morning and said everything was good. There are concerns with the CMV levels and his legs, which they xrayed today. Nothing showed up abnormal in the xray, while this doesn't explain the pains, it means nothing major is wrong, so no concerns or extra medical intervention required.

Adam is still eating very well and is on very little pain relieve. This is amaizing in itself!!

He received  a parcel from Childhood Cancer association in South Australia that contained a couple of fantastic Christmas presents. They where wrapped in bubble wrap and we had a bit of fun with it - as you can see below in the video..

As Christmas gallops towards us we thank you for your continued Prayers and messages.

Day +12

It has been an exciting couple of days, as Adam's cord blood transplant has started to produce some white cells, including some much desired neutraphils. It is early days yet, but it certainly looks like things are happening.
We have also decided that, despite wanting to cancel Christmas, it is not going away so, as Darren mentioned, we have put up some Christmas decorations and lights and are generally getting our heads around looking forward to Christmas day. Looks like we will get our wish for neutraphils for Christmas so we better embrace the wonder and joy of this wonderful time of year and the amazing gift, of the baby Jesus.
We know Matthew and Alex will have a great Christmas day with family so we had better keep our heads up too. It shouldn't be too bad in here as there is a special Christmas lunch planned and special visitors to the ward and I am sure Father Christmas will be able to find Adam, even in here. Father Christmas has been around the ward a couple of times already making sure he knows who is here, so it shouldn't be a problem. I have also contacted him to ensure that he knows where Matthew and Alex's sacks will be!
In the last few days we have also almost finished decorating the room in crows colours, see the pictures below. Dad helped too, and even managed to keep his stomach in check, the things you do for your children!

We think it looks pretty good especially with the added pictures from our friends Karen and Daniel, thanks guys!!

There is a long way to go yet with Adam's treatment and we are now looking for any sign of Graft vs Host disease, which is expected and to some extent desired, just in a small manageable dose would be nice!!! Confused, well it is a bit confusing.

Thanks as always for your continued prayers and positive thoughts our way, they really help and we feel this care in a very real way.
Marian, Darren and Adam

Day +10

After a bit of a flat day yesterday, Adam has been a lot brighter today. What a blessing!


He had quite a bit of pain in his legs yesterday, from one of the drugs he is on and his body has been struggling with fluid retention and electrolyte loss. All apparently very normal for his type of treatment. All this management sounds simple but with replacement of platelets and red blood cells on top of all the other medicines requires more pumps/syringe drivers etc ......so we have graduated to an even bigger pump holder, apparently it is called the flight deck!!

Adam was hungry again today, and ate quite a bit, which was really nice to see.
We thought you may also like to see the rest of the care team on 24/7 duty in Adams room ;Softy (the bear - a veteran carer) very good for raising sore legs; Pup (the big dog, a new edition) is very soft and comforting when you are feeling down, he has proven to be a really good head rest too;  Rascal (little dog) when only a small friend will do. Along with our special quilt to remind us of how much our church family loves us and his soft star blanket to cuddle up to (because it is washable - thank goodness) to remind him of home.




Adam also got a special early Chritmas gift today and was very excited about it, excited enough to get out of bed. Thanks Auntie Carolyn, Uncle Paul, Christopher and Stephanie.

Hoping for another good day tomorrow.

A quick pan of the room. We put up some lights for Christmas etc.

Day +8, getting a bit closer

Things are going ok. Temperature seems to be settling today, and other than the electrolytes in Adam's blood being low, he has been ok. Each day there is something that needs some management and the nurses are stressing about how they will get everything down his two lumen CVC line. He has not grown any new bugs so that is a good sign.
This photo is for the nurses on Brookman - check out all the lines and syringe drivers, we call the top bags jelly fish !!

Adam has been in better spirits today after a bit of a flat day yesterday. We were all a bit flat yesterday and the day was a bit miserable, weather wise. Today he sat out of bed and argued with dad about how the meccano set should go together. We will post a photo when (if) it is finished!!

Adam has been eating little bits and has done quite well food wise today. He is hungry, (as he is now on some steroids) and knows what he wants to eat, but when he gets it ofcourse it doesn't taste any good. He really wants new taste buds for Christmas. That's a bit ambitious, but if he got neutraphils (a certain type of white cells) for Christmas hopefully the taste buds will not be too far behind????

Darren and I are ok, we are still getting out to do some exercise each day and trying out the local take out restaurants. I do not think I have seen so many Thai and Japanese restaurants in my life, they are everywhere!!! Adam even ordered take out tonight!!

We are all missing Matthew and Alex but enjoying skyping them regularly. What a great invention.

Thanks for your continued love, positive thoughts and prayers, they all help. Thanks to everyone who has posted comments, if you can work out how to do that !!!
Love us

Slowly slowly....day +6

Well everyday seems to bring something! But todays little drama has turned out to be a bit of a bonus. Lets see if you can guess. What is missing from the picture below, compared to yesterday's photo ????

Did you guess??? Adam accidently pulled his naso-gastric tube out in his sleep last night. He was quite upset about it this morning. We do not know quite how he did it, because it was taped to his face and he hates tape coming off!!! But he managed to pull it all off and completely out his nose without waking up! Maybe we should do all his dressing changes while he is asleep!

Anyway his misery turned into joy when the dietitian and doctors said he did not need a new nasogastric tube. He has been quite bright for the rest of the day and managed to eat a little bit too. They were not managing to get a lot down the tube anyway and have started nutrition straight into his central line instead (TPN). They will keep the tube out unless he really struggles getting enough TPN and isn't eating anything at all.

His temperature has been a bit variable today, was up a bit this am and good through the day, but is way up again tonight. We are not sure what that is all about, could be another bug (hope not) or may be a reaction to the various medicines he is on. We will see what the doctors say in the morning and how his temp goes overnight.

Thanks again for all your love and prayers.

Day Plus 5

Day five has seen his temperature drop slightly.

He has also started to brighten up a little which has been nice to see.

He had a top up of platelets today and red cells yesterday.

The feed down his tube is dripping through slowly following last night’s dramas. He was getting 10 mls an hour last night but was chucking it up every couple of hours. They put it down to 5mls an hour which has helped, but unfortunately he suffered from diarrhoea through the night. He had multiple bed changes and was very tired (as was Marian) this morning.

Through today he still has diarrhoea but has been better able to deal with it.

He still has four pumps and lines plugged into his 2 line CVC (see photo). The management of all his medications is quite amazing, the nurses are very efficient.

Adam this morning catching up on zzz’s

His four pumps