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.

Clinic Visit and back in hospital

Today Brody and i went set of to clinic this morning at 7.00am, as he needs to have his 9hr treatment for his poo bug, expect i could give him the before medication and the after medication so we wouldn't have to stay the whole 9 hours.

But we did as Brody's temp started to go up again and it hit 38.0 this afternoon, so they are keeping us in again, for more medications and to watch his temps. Grrr...

Brody was upset, as all he wanted to do was go home again to Grandma's. A least we got to have 4 days home, which was lovely having our own bed, home cooking and just walking around the house and doing what we wanted to do.

Every day is still so routine as Brody eats breakfast, i take about an hour to prepare his medications and then give them to him in his nose tube. Also top him up with some water.
The evenings are the same as he has dinner, then i prepare the same medications and give him his bath and then hook him up for bed to the pump to keep up the water as he needs to have a litre a day of fluids. Some days its so hard to get him to drink 500ml.
So most of our days are filled with doing stuff, its been a long hard year and i am hoping the future will get better,

Monday, clinic Visit!

Today Brody had his usual sharpie and bloods to check levels. They showed that he needed potassium, so now we have another medication to add to the list.

The doctor is happy with him, as he is getting back to his cheeky self, he pulled things of the wall and turned the power of to the room and made the doctor's computer shut down. This tme he is more clamer doing it, when before he jumped from one thing to the next, he was so fast, it was hard to even talk to the doctors.

I asked the doctor if the cancer level dosen't go down enough, after they try and bring the good GVLD, she told me they have a few things they can try, which is one bringing Luke back down to get some of his active T-cells to out into Brody and let the GVHD take over. But they are hoping that it will not get that far.

She also told me the reason why Brody is sleeping so much is from the radiation, as around this point is when they can sleep up to 16hours a day. So this is a normal thing. Otherwise Brody is getting back to nromal very slowly.

Next visit on Wednesday, which is our long day, not looking forward to it!

Back Home and Clinic Visit!

Yesterday the doctor's come in and Brody was sound asleep, they told us that the kidney ultra-sound was normal and we could go home. I wasn't ready for that! Yeah!! I let Brody sleep while i packed every thing up and then i woke him up and he was soooo excited.

Today we had to be a clinic by 9.00am, so it was rush, rush this morning. Brody got a sharpie and they took bloods out of his cords to check all the levels.
We then saw the doctor and she told us that the cancer cells are still not at a level were they would like, so they will reduce some of his medications to give Luke's cells the chance to take over and destroy the cells. This can cause his GVHD to come back, if it comes back mild they wont treat it but if it comes back worse they will treat it again.
This is not the end and the doctor's still have confidence in what they are doing, to get it to the right level. They told me they will tell us if it is bad as they too would want Brody to enjoy his life, so we are not there yet. So dont give up hope or say sorry. Brody has always and will be at very high risk for the cancer to come back, therefore this is why we will be in and out for another year.

Brody otherwise ok, he walks very slow and is always tried, but enjoys playing with his DS and watching his movies. Also getting Grandma to cook, cook, cook.
Thanks again to everyone, will write another entry on Monday after our day at clinic again. Hope every one has a great Father's Day!!!! Happy Fathers Day to all xoxoxo

Tired Day!

We are still in hospital, nothing happened much yesterday, we did find out his nose test was clear, his blood test was clear. So have no idea whats happening.

His temps have not gone up again, but his blood pressure has. If it goes to high they will give him something to control it. After his 9 hr treatment for that poo bug, as it has to be clear for one month before they will stop it, Brody will be having a kidney ultra sound, just to make sure his kidneys are not causing the high blood pressure.

The Doctor's are still waiting for one more test to come back to see if Brody has Cytomegalovirus (CMV), which is an infection that develops in different organs. Infections are common during the 12 months immediately following a transplant. Infections can be new ones or they could have been in Brody's body before. Well we just have to wait and see.

Brody sleeps all night and half a day, which is not like him at all, he isn't doing much but watching tv and playing his DS. Hopefully he will get better soon so we can get back home and sleep in our own beds and have a good home cooked meal.