Low on Potassium and bone Marrow Results

Last night was a hard night as we did not get any sleep, Brody's potassium level was very, very low. Which means if he hasn't got enough it can effect the heart or if he is giving to much it can effect the heart.

Therefore Brody, has to have a heart machine put on him and if anything happens he will go to ICU. but at this stage nothing has gone wrong and he is still doing ok.

He is not eating or drinking, but he is still on the TPN. They have turned off the nose feeds as it was going straight through him. He had 7 dirty nappies last night. this also causes the low potassium level and because he is not eating.

Today he has been very tired and feels sick as he has asked for the sick bag heaps of times, but has not used it yet. His rash is all over in very little fine red dots, and is light red in the morning and afternoon is a brighter red. It makes him itchy but not much.

The doctor's have told us the bone marrow result was the same from before, so his cancer is still at a level they don't like and need to let the GVHD take over.

He will be having a PET scan next week, to see the problems in his gut, as its looking like the GVHD is affecting the gut. they can give something for it, that will help the gut and not stop the work it has to do else where.

If the GVHD gets any worse they will put him back on steroids for a few days and then take him off, its like trail and error. Hopefully it will help get the cancer level down as this will reduce his chance of it coming back, but we will still have that worry that it could come back.

Today marks the a year since Brody was diagnosed and we had to rush him off to hospital. I cant believe that we made it through, but as we are still in hospital and still doing things to stop the treatment, i just don't know how long we will be doing this for.

Thank you to all my friends and family, for their support, gifts, comments, thoughts and love as we wouldn't have got through this year with out your help.
A huge thank you to my mum and dad, for all there support, as they have been through so much them selves and still give love to Brody and me. I am glad i made a decision to stay in Sydney as mum and dad will also need my help, they have a slow battle on their hands and will need all the help they can get too. I love them so much!!! xoxoxo

Results!!

We found out the results today from the CT scan, which the doctor's have told us that nothing has shown up as an infection, Brody has a little bit of fluid in his tummy but shouldn't be anything. They are planning to do a P.E.T scan early next week, but if he is better, we will cancel it. The pet scan will show us is his gut has the GVHD and how bad. As i believe they think everything now is from the GVHD.

As Graft vs Host Disease effects the skin, gut and liver. Brody has rash all over his body now, but still not as bad as Transplant, the rash is more finer. He has gut issues, with runny poo and not eating. Its a catch 22 as we want the GVHD to kill of the cancer cells in Brody's body but we don't want it to bad, or have many side effects. They have said we can put him on steroids for a couple of days to clam it a bit then take him of them again. Its going to be trail and error.

Brody's temps have stopped, which is a good thing as i thought they were never going to, after 2 weeks of high temps. But we cant go home yet as he is not eating.

They are going to start the TPN, which is feeds through the central lines into his blood, as the nose feeds are going straight through him and he isn't getting enough. So this will make us in here for a few more days.

Cheered up by Capatin Starlight

We have nearly been here for 2 weeks this visit, and still no reason for the high temps. The doctors have booked a CT Scan in for tomorrow and if that does not show up anything he will have a P.E.T scan sometime during this week too.

They started Brody back on feeds last night but only a little bit at a time, he seem to cope with this, which is good, as his little tummy is starting to look skin and bone. He did eat a little bit of pop corn today, just a kids size handful. Yeah!!

Captain Starlight come in today and cheered Brody up by making a great balloon tiger. Thanks Captain Starlight. xoxo

Big Day!

Today Brody and i got another gate pass out to Grandma's, he was so excited to go as he jumped out of bed and got his shoes ready to be put on. Just like the Brody i knew, but then once we got there he didn't eat Grandma's home cook meal, which isn't like Brody and had a sleep and watched some TV. He is not the same Brody, he hasn't eaten in days and isn't as active as he once was.

The doctors started him back on nose feeds but at a lower level and he had magnesium infusion tonight. He has gone to sleep early, we will just have to take each day as it comes and see what happens next week. Lets hope they can find out what is causing this infection.

Thank you to a lovely lady Rebecca from Yasminah's Gift of hope, http//www.ygoh.org.au for dropping of some great DVD's and new books for the Variety Ward. Everyone in Variety Ward are very grateful. Thank you xoxo

The Variety ward is getting lots of donations thanks to all the wonderful people and my friend MIchelle for all her hard work. It really a great feeling seeing the children and parents choosing DVD's and helping themselves to snacks. The lovely nurses up here all THank me, but they are like family now and we love them.

VAREITY NURSES YOU ROCK!!!

I am very tired and need a big sleep too, some days just get so busy with computer work, doing things for Brody, running around for the ward and Talking to friends and family on the phone.

I would really love to do things for the parents up here too, have to think of some ideas.

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