Careflight Visit, Change Meds!!

Today we got to go out for a little while but still in the hospital grounds and with our nurse from Variety Ward. We had a visit to Careflight to see the helicopter thanks to a lovely friend Sarge xo.

Brody was looking forward to it until it come to go, he said he wanted to stay in hospital for a while as he was tired. But i gave him a bit of a push and he really enjoyed it. He then didn't wont to go back to hospital.

John from Careflight showed Brody all the ins and outs of the helicopter. The best part i think he liked was all those buttons, as Brody loves pressing buttons. lol Thank you so much Careflight for the visit.

Brody last night had an explosion of the bowel, so they stopped the feeds. It was a huge job to clean up, but our lovely nurse clean it up for us.

I was talking to the nurse about how the doctor's were very negative the other day and made us all think the worse and how i didn't understand why they haven't changed his medications to see if that will get rid of the infection.As this is what they have done in the past. I couldn't understand why they didn't do this before they did the bone Marrow op as we have been here for a week. My lovely nurse spoke to the night doctor's and told them about stopping feeds and he is still having high temps, and maybe need a different medication.

The night doctor agreed, so they have now change meds, lets hope it fixes the problem.

The doctor's come in this morning and said they will give him 2 days on this new medication and if he is still having high temps they will do a CT scan next week to see whats happening in his chest. As that's been his problem other times. She told us the test next week she believes will be the same as the test before. Which was the cancer is still there at a level they don't like but will bring back the GVHD to try and kill it off.

The GVHD is starting to come back as the rash is spreading more all over his legs, feet, tummy, arms. Its only a fine little red dots at the moment. I also think the runny poo's are from the GVHD too.

After our visit to Careflight, Brody got a visit from his cousins Domenic and Ethan for the first time. He was so excited and so were the boys. Grandma and Grandpa brought them in for the visit. It has been a big day and we had a good nanny nap after it all.

Brody ate 2 slices of toast today but peak at 38.9 this afternoon, and is watching his movie thanks to Uncle Dave, Domenic and Ethan xox.

Tomorrow is a new day, and hopefully will bring good things, we are hoping they will let us go to Grandma's house for a little while.

Stressful day!!

Brody is still having high temps and is not eating, so they have put him on nose feeds again. He has been vomiting up his meds but today has held them down, well so far!

He had a good morning with his Nanna coming to visit and she gave him lots of great DVD's.

Two of the doctor's from the Transplant team come in and told us that yesterday's results, found that Brody has some sort of infection in his cells and the cancer hasn't taking over. What this means, i don't know!

After that the day just got really stressful as i was worried about other issues in my life and i could not get rid of the stress. I also was thinking about what the doctor's said and couldn't understand how they would be very worried and tell me all this stuff and then it to be just an infection. I went down to the clinic and asked to see the head doctor, that normally See's us.

She come up to the our room this afternoon, and told us that she was happy, that the cells have shown that they are grouping together to fight some sort of infection, they don't know what. But still have to wait for the real tests. She believes the results of the test will show the same as the last bone marrow, which that the cancer is still there but we can hopefully treat it with the GVHD and hopefully kill it that way, but its not taking over as yet.
But she is happy!!

Well now i am totally confused, and glad she is happy now, as i am still stressed and why did she tell us all that stuff before, why didn't she say its more likely an infection but could be the other but we will talk about that once the results are in. Why give me so much stress and worry? Its funny, as this whole year that's what has happen, as when we got put into hospital, they would not even mention the word cancer until they had the results. So now i have no idea what to expect from the doctors.

They also told us we can't leave the hospital because of his high temps, but we can have a gate pass this weekend in between his medications. Well Brody and i will love that, as its relax time and out for a good meal. Yeah!!!

Bone Marrow OP!

Brody had the bone Marrow OP today, every thing went well, he come back and had something to eat and his spirtis seemed to be more happier today.

We haven't got any results as yet, maybe tomorrow. The real test will take normally up to 10 days but the doctor is going to rush it through and should get them back within 5 to 6 days.

The doctor's believe it could be one of 3 things
1: Some sort of infection they cant find
2: The cancer has come back a little bit, this means getting Luke back down and giving more of his cells.
3: The cancer has come back to much for any more treatments, and we give us time to go and enjoy whats left of Brody's life.

So cross your fingers that in 5 to 6 days we will get good news. Thank you again to everyone for all your support. xoxoxo

9 Hour treatment!

Brody had temps of 38.8 early this morning, and is feeling more and more sick, as he is not eating at all. I think tomorrow we will have to put him back onto the feeds through the nose.

He is still having his 9 hour treatment for the poo bug, and again sleeping alot, as he fell alseep at 10.00 this morning after sleeping all night and then going back to sleep again at 5.00pm.

When he is awake he is happy enough and plays, paints, watches TV and DS.

The doctor's have moved the bone Marrow for tomorrow, to see whats going on. Dont know what time as its like lotto, you have to wait till your number is called up. So hopefully it will bring good news, wont know results till the next day or a few days.

Temp was alot higher today!!

The morning started with a temp of 38.7 and Brody did not feel like eating anything. I then had to give him all his medications and add some fluid into him as well. He then was sick all over the bed, so i call the nurse and we changed his bed, gave him a quick wash and changed his clothes.

Doctor's all come in and check him and told me that late next week will be his bone Marrow test. If the temps are gone for 48 hours we can go home and then come back for the test next week, so we are hoping they will go for the weekend, so we can go home for a while. His temp is still sitting at 38.0 now. So 48 hours from tonight.

Now that he is off the steroids he is not eating as much, and has started to have his day sleeps again. He is still his happy self and never complains about anything. He is truly amazing! His GVHD rash has come back a little bit, mostly on his tummy, under his arms and around his hips, but its not too bad and not like he had in transplant. So lets hope its doing its job and killing all the cancer cells.

After his long sleep, he woke feeling better, and ate some food, while watching Tv and playing DS. But he went to sleep around 6.30pm, which is really early for Brody after having 4 hour sleep during the day.

Tomorrow he has the 9hour treatment again for the poo bug, as he needs to be clear of it for a month before they will stop it. It seems like forever!

I am really worried about the outcome of the test next week, as i have know from the start that he had a very aggressive cancer, but i hide my emotions and feelings as i want Brody to enjoy his time, not worrying about mummy and why is she upset. What i find is amazing after we have spent a year together 24/7 and knowing other parents that have lost their child, is that everyone thinks that's a sad thing but you have to move on. Yes i agree but wait for a moment and think about that parent, who hasn't done anything for a whole year except looking after their sick child. Its along time. It will take a longer time to heal and get over not having that child with them. How can they go back to work after a couple of months or get over something like this so soon????? Its not that simple. My feelings go out to all my friends that have lost their child. Thinking of you all xoxoxox

Still in Hospital!

Brody is still having high temps, but they are in the low 38.0's. The doctor's still don't know why, as there is no sign of infection. His blood test come back negative. He has nothing else wrong and seems to be his self, well like he has been for the last couple of weeks.

The doctor's told us today that they will do another Bone Marrow test soon, to see whats happening. He wasn't due for another until the end of October. But they said it could be the cancer coming back, as sometimes high temps can be caused by the cancer coming back. But they are not sure at this stage, until they see the results from the bone Marrow test. So we are playing the waiting game again.

The doctor's stopped the steroids today and cut down his other drug that's stops the GVHD, so hopefully the GVHD can come back and destroy the cancer cells. Which might mean Brody will get his red rash back. He is showing some signs of the red rash but its not as bad as he had it before.

We can only hope and pray and wait to see whats happening. But if i hear the cancer is back and they cant do anymore, Brody, Bill and i are on the first plane out of here to Take Brody to Movie World, Sea World and Dream World. As this is what he has wished for since we had to cancel our trip last year for my Birthday. Thank you so much to Sarge, for organising this wonderful trip for Brody. I am going to make sure he enjoys every minute.

But if they come back and say they can do things, our trip will be put off for a while and we will fight this and make Brody's fight easier and happy for him.
MY boys are my life, and i love them both so much. xoxoxo

Hospital

Brody and i are still in hospital, its looking like we will be here till Monday, we hope!
Brody's temps are still in the low 38. 0's, so that means we have to wait a extra 48hours of no temp before we can go home.

Brody is otherwise doing ok. We are all set for the weekend as Grandpa brought his TV/DVD in, his school work, painting, playdough and we have new DVD's to watch, thanks to all the people who have donated DVD's to Variety Ward for all the children to watch.
Brody and i have also donated some DVD's as he is growing out of some and likes to watch the more older movies and because he has so many. He says to me give that one to the other children. He is soooo.. cute and caring.

After a year of staying in hospital, its getting harder, as the days seem longer and the lack of sleep makes you sooooo... tired. We both have stopped looking forward to things as our plans always change or we don't stay out long enough.
My days in hospital are to be with Brody and to help others that are and will be in our position, My wonderful friend Michelle, as organised things for the hospital, we have done the DVD drive and there is still so much that people can do. Next we are organising bar fridges and painting the ward. Its going to help children and families so much.

But most of all, Families are strain with financial problems, when they go through this experience, so if you know someone going through it, please help them by giving food vouchers, petrol vouchers, gift vouchers, payments for their bills or even organise at special event for them to raise money. AS my special friends Nicole and Sarah did for us. It helps so much, ease the stress of families. Thanks.