Tuesday, December 28, 2010

Eighteen Days post transplant

Another few days that went to plan.
We had the normal morning visit from the doctors. They said Adam was doing well and there was no need to change anything right now. He still has an enlarged liver which they are watching and we continue to keep an eye on his blood pressure.  But other wise pretty boring, as we said going to plan!!!!

Adam is still eating really well, so they have stopped the TPN and he needs to drink more to ensure he doesn't dehydrate. He left his room again today to spend some time in the adolescent room, watching a movie and playing the PS3.

We have been spending some time planning what Matthew and Alexander should bring when they come over on day +19. Beach stuff is top of the list and we are thankful that our wonderful family are happily organising this back home, thanks Carolyn.

Our house now has a long term sitter who is getting settled and tackling the fish pond, which was a bit of a mess but thankfully had no dead fish, a good sign...

Saturday, December 25, 2010

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!

Thursday, December 23, 2010

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.

Wednesday, December 22, 2010

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

Monday, December 20, 2010

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.

Saturday, December 18, 2010

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

Thursday, December 16, 2010

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.

Wednesday, December 15, 2010

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

Monday, December 13, 2010

Yukky Day.

Adam didn’t have a good day today
He had his tube done today. They inserted a nasal gastric tube to help feed nutrients to him as he is not eating as well as his body needs
He doesn’t seem like it is going to do much anymore today. He slept for most of the day and is upset at the process so it is better he rests.
The Phenergan didn’t work as we planned it to. He remembered most bits of it but didn’t remember his dressing change.

We have also just had a spike in temperature – 38.8.
He is getting antibiotics straight away and paracetamol to help maintain the temp down.
This isn’t capping of the day well!!

Sunday, December 12, 2010

Early Days

Adam is going along really well.
He has been bright and giving cheek.
His counts are plummeting as required and there are signs of mucositis which is expected with very little white cells.
He is eating well also, but it is getting \difficult to find things he fancies.
We would expect the doctors to place a tube down to his stomach to help with nutrition over the next few days. This is part of the plan so not a big concern for us, however Adam is not looking forward to this and continues to eat like a trooper.
Marian and I are doing well and are excising each day to help keep our sanity.
Adam and I started building a meccano set today – a drag car. It will take us a couple of days.   Adam plans to drive it back home!!!

Friday, December 10, 2010

Transplant Day.....

After conditioning over the last eight days, we finally arrived at day zero. December 10th, 2010.
Darren arrived in time to see the process which was really great.
With four nurses to ensure the procedure was done to the book, Adam received his life saving donation.

Adam did really well with the transplant and has had an afternoon sleep which is really nice. He has worked so hard mentally over the last few days and it was great to see him relax a little.

We now wait for the cord blood stem cells to en graph, which could be weeks away. So lots of waiting and praying that he stays "bug free".

Thursday, December 9, 2010

TBI and preconditioning finished

Wow, Adam has come to the end of his pre-conditioning treatment! Yippee!
Three days of Total Body Irradiation was an experience. Adam did really well, he was a champion, letting the radiotherapy team do their job "packing him up" (see photo's) ready to treat and then staying still for the 45 minutes of radiation. He managed all 6 treatments very well and only had challenging side effects on the evening of the first day.
It is great to have this phase of the treatment over and I think Adam has been a bit excited today. He has been feeling ok and giving all the staff plenty of cheek. He also managed to send the emergency alarm off in his room by shooting it with his nerf gun! He says he was aiming for the nurse call button, just below it then.....oops. I dashed across the room to turn it off as a cast of nurses decended. His nurse just said "Don't do that again Adam!" Probably not the first time it has gone off by accident..... or the last. I then drew a target on the window and white board, away from the call button!!

 The radiation machine, they sort of aim it at you!!

Legs all packed in so that he was a solid mass and TV set up to watch, he even managed a little sleep this morning, amazing the power of prayer...... Thank you everyone!

Tomorrow is transplant day, very exciting and Dad will arrive too. Adam and I are looking forward to all of this. More photos!

Thanks again for your continued love and prayers.............Adam and Marian

Monday, December 6, 2010

Chemotherapy continues

Well things have improved since Saturday night and have had a pretty settled couple of days. Big day tomorrow with Total body irradiation for the first time. Adam is feeling ok about this now, just got to lie still for a while. He has picked out a special DVD to watch to help, so hopefully this will work well.
Today we have started to get ready to decorate the room, we are putting up a new colour each week. This week will be yellow, next week red, the following week navy blue. No prizes for how we choose those colours. Got to get it all going before dad arrives and sabotages the colour scheme!!!!
We will put the yellow stuff up with help from the play coordinator here who is very tall, I couldn't quite do it. We want the yellow on the top of the wall so dad can't pull it down!!
We are also hoping that we might see Giggle tomorrow. If you do not know who giggle is we will take a picture and post it next time.
Thanks for all your continued thoughts and prayers.
This is Coogee Beach ... still enjoying managing to get to the beach each day to soak up the view.

Saturday, December 4, 2010

Chemo has started!!!!

Well the chemotherapy and other medicines have started and Adam was coping really well, until this afternoon! Has been a bit rough since about 3 o'clock, but he is sleeping now, due also to the medicines !!! We have settled in ok to the hospital and all the nurses, doctors and other staff are nice. It is very interesting all the differences between hospital at home and here, nothing to be concerned about either way just lots of differences!
Randwick is certainly a nice place to be and I have enjoyed going for a walk each day and walking to the beach, again not like home but nice to see the sea!! That's pretty much the same !!
Also yesterday we had an answer to prayer in the way of some accomodation from around Christmas to the 9th of January, when we move into the already booked apartment at Coogee Beach. This fantastic, as it would have been a bit crowded in the unit at Rony Mac. Below is photo of Adam in his new hospital bed and the others were last weekend in Sydney!

This one is at Wagamama's ........... yum!!!!

Hopefully Adam will feel a bit better in the morning. God Bless.

Thursday, December 2, 2010

Adams on the Oncology ward

Adam says hi everybody. Have been having lots of fun, I guess, playing lots of wii and having fun on that. Did some homework as well, didn’t really enjoy that bit! Yukky stuff starts tomorrow, probably won’t feel so good then. Hope that everyone in my class is ok and been missing me!
Mum says I should be a bit more humble !

Tuesday, November 30, 2010

Sydney - Adam has arrived

Well we have finally made it to Sydney. We had a great weekend enjoying the delights of Sydney like tourists with family. Family have now returned to Adelaide and Adam is preparing to start the transplant process on Thursday the 2nd of December. We have been delayed a day for technical reasons, but thats ok. It would be nice if the weather was a bit better today, but never mind.
We will keep you all posted once we are on the hospital ward, all settled in Adam's room.
Thanks for all your thoughts and prayers we feel surrounded by love and care.

Wednesday, November 10, 2010

Adam's Story

Adam’s struggle with cancer has been going on for 9 years now. The most recent battle began on the 3rd of August 2010 when his bone marrow biopsy came back positive again for Acute Lymphoblastic Leukaemia. He started chemotherapy on the 5th of August with an aggressive regime similar to his last relapse regime in 2006. Adam was doing quite well and we were home on the 8th of August and had a day of chemo on the 12th of August.
On Saturday the 14th, Adam woke late morning with uncontrolled vomiting and we had him at the Women’s & Children’s receiving treatment by 1pm. Everything seemed under control and Marian went home while Darren stayed with Adam over night. However, in the very early hours of Sunday morning Adam was transferred to Paediatric ICU and all Adam’s consultants were on deck as his vital signs were all critically out of control. Adam had a serious bowel infection that had taken the opportunity, while his immunity was severely compromised, to take hold of his gut. Thankfully it was decided that the infection did not warrant surgery and we waited out and prayed for his symptoms to settle and for the antibiotics to do their work.
On Sunday morning test results revealed the bacteria causing the infection was a seriously deadly bug and Adam may get worse before he got better, if he got better. His Haematologist/Oncologist consultant decided the best course of action would be white blood cell donations from volunteer donors. Marian prepared immediately to give his first donation on Monday and the word went out far and wide for donors with AB+ blood type to come forward to help. Adam received Marian’s white blood cells at 12.30 am on Tuesday morning and another white blood cell transfusion everyday for the next 10 days from wonderful volunteers.
We were overwhelmed with the generosity of many AB positive donors and had all the help we needed. The haematology team at the Royal Adelaide Hospital were wonderful and very generous with their help and support with this process. We can’t thank the people that ultimately donated their white blood cells enough. As Marian can testify, it is a lengthy process to donate white blood cells as it is more complicated compared to giving a normal blood donation. The generosity of donors with their time and support from work places, in some instances, was extremely appreciated. We were also very comforted and uplifted by the many people who offered to be donors and the support of family and close friends in supporting this process and the prayers of many others at this critical time.
It was because of these white cell donations and the prayers and support of so many that we believe Adam is still here today. Now recovered from this infection, which did take an operation in the end to remove the affected bowel, Adam is ready to face the ongoing treatment to try and eliminate his leukaemia once and for all. A more recent bone marrow biopsy also revealed there is no trace of leukaemia in his bone marrow which ultimately means his leukaemia is still very responsive to treatment. With a milder regime of chemotherapy treatment restarting tomorrow he should be ready to go to Sydney, probably in late November, for more preparatory chemotherapy and radiotherapy before a bone marrow transplant.
Adam needs a bone marrow transplant to try to successfully cure his leukaemia. His past two chemotherapy treatments, although successful in eliminating his leukaemia for periods of time (2 ½ years off treatment after the first treatment and 22 months after the second treatment), have obviously not got rid of the disease for good. Unfortunately, none of his family members are an appropriate match for this transplant and so he and his family with him need to travel to the specialist transplant unit at the Children’s Hospital in Randwick, Sydney. This will be an upheaval for us as a family, but we feel very comforted that the support of the Hudson Maher Foundation will reduce the financial stress that this time would have also caused. The Hudson Maher Foundation will support us with costs for accommodation and groceries while we are in Sydney. We are very grateful for this support and the support through our communities at Adam’s school, Darren’s work and other local community services in donating to the foundation for our family.
All this support, caring and prayers has made an incredibly difficult time bearable and reduced further burdens on us as a family. We will be forever grateful for the generosity of so many to Adam and us as a family and to the Maher family for setting up the foundation to directly support families like ours in this distressing situation.