Day 4

Brody's temps have gone down for now, but he still has all the other problems mention in yesterdays post. He is not his happy self as he just lays there watching movies all day.

The nurse take blood from him to check levels but he also has to have either a finger prick or needle to get blood out of his arm. He has always hated needles so this can be very difficult for both of us as i still have to hold him down to get the nurse to do it.

Any type of activity (eg. A shower or sponge bath) tries him out. Brody is not eating or drinking or swallowing his tablets any more, but he is on fluids and feeds. He has 7 different machines that are for 7 different things that go into his body. He also has his normal meds crushed and put into his nose tube at morning and night and then other meds that they add to his cords. It never stops.

We have been here for 4 weeks now and i am getting very tried, as with all these machines buzzing, nurses in and out every one to two hours, and the little bed i have to sleep on. I do not get much sleep, as soon as i fall something happens and i am awake again.

I just try to get through each day, by forcing my self to get up, and start the routine. So i don't think about to much as i would just get to confused. The first thing on my mind is Brody and by the looks of things if all goes good it will be another couple of years before we could be back to normal. BUt Brody and my family mean the world to me and i will always do whats best for them.

Day 3- post Transplant

Luke went back to Queensland today, we will miss him so much. He is still in alittle bit of pain but he will get better soon enough. Grandma has brought a supply of the iron tablets so he has enough for a couple of months. Hopefully he will remeber to take them.

Brody has finally been knocked down!!! he has pain and high temps. Doctors have told me the high temps can last for the next 2 weeks. They have him on regularly morphine and anti biotics. The morphine is keeping him comfortable, but he just lays on his bed, holding my hand and watching movies. The doctors have also told me that it will get worse before we are done.

The pain i am feeling watching him like this and having to make him get up and have a shower or get a needle or finger prick is killing me. But one thing i have learnt from my son is love will get as through and nothing is going to knock me down to comfort and help my little man get better.

Brody has had some moments where he has put on a brave face, (like in this photo). The shirt Brody is wearing is a OFF DUTY LIFE SAVER singlet, as he was going to start nippers this year at Forster/Tuncurry Beaches. He loved swimming at the beach and used to swim right out to the shark nets with floaty on. He had no fear and would always try and run back into the water when we were getting ready to go home. So he is OFF DUTY for now, until he is well enough to join up.

Day2- post Transplant

We had a normal morning and after mid day Brody was not himself, he was very tired, frustrated, crying easy and just feeling down.

He has started to get Mucositis, which is a painful ulceration of the mouth, throat and gut and can also cause cramping, abdominal pain and diarrhoea. Brody has the diarrhoea with a very sore and red bottom. His temps are in the low 37, his head is still red and saw to touch. He has one blister on each ear.

The pain doctors have hooked up heavy pain killers if needed for the weekend but at the moment he is having some panadol. The transplant doctors are slowing down his feeds and giving him all the vitamins in the drip to give his gut a little break and help it heal.

After the panadol he was feeling better and watched some movies in bed just having a rest, as bye now he was awake again and couldn't sleep.

Day 1- Post Transplant

Brody had a little bit more chemo today, which is called Methotrexate. When they use it as a transplant medication it helps restrict the ability of donor T-cells to attack the recipient's organs and tissues (Graft vs Host Disease). See Graft vs Host Disease on an old post about the transplant.

The effects from this chemo can be- nausea, vomiting and loss of appetite, diarrhoea, mouth and throat sores, skin rash, blurred vision, fatigue, liver damage

Brody still has alot of energy, he just amazes me and one of our lovely nurses said today that she now believes that nothing knocks Brody down!!!!
He has a couple of issues but are pretty normal from all his treatments. He has started having really runny diarrhoea, a sore red bottom, nausea and some little blisters again on his ears. His face is still red and he has now got a shiny bald head. The fluids have fixed the blood that was in his urine. But so far so good.

We had a normal day doing paintings, drawings, school work and watching movies. Brody also loved to play with the nurses torch and shining it in their faces. But they don't mind to much as they all know us and we know them, We have lots of fun joking around or just having a chat. The Variety Ward has been wonderful to us and thank them so much for all there help.

The doctors are still waiting for Brody to come down with fevers, pain and mouth sores, and they asked the pain team to come and see me tomorrow to work out a pain chart so that if something happens on the weekend steps are already in place.

Luke is doing better, as he went of to the shops today with his walking stick. Grandpa is getting ready to fly out to Melbourne tomorrow for Aunty Alison's funeral. We send all our love and our prayers and thoughts are with you all in Melbourne. xoxox

I would like to thank all my wonderful lovely friends for all there support, help, thoughts and kind words as with out this Brody and i wouldn't have got this far. Your all special people, thank you. xoxoxox

Day 0, Transplant Day

The morning was as usually, i ran across the hospital to wish Luke good luck and give him a kiss and cuddle. I was running back to Brody holding my tears back, when in the background they had music playing about rainbows, that just cracked me up as i knew it was Sonya telling me she was here. As Sonya told her boys that if they see or hear a rainbow that it was her, telling them she loves them.

Back at Brody and his room had to be clean and I had to give him a shower before the transplant. We got word that Luke had finished and the cells were ready.

Transplant team come and hooked up Luke's bone Marrow to the drip stand and to Brody's cords. For the first hour a Nurse stayed with us, as she needed to take 15minute observations. Then she did half hourly and then every 2 hours. Brody had no problems and no reactions. The whole process took 4 hours to run through Brody.

Luke stayed in recovery for a while until the doctors cleared him and was able to go home with Grandma and Grandpa. The Transplant Doctors said Luke could visit Brody and see his bone marrow going into Brody. It was a nice moment. I was so proud of them both. Luke is very, very saw and can hardly walk, but he is just like his brother and keeps moving on. Great job Lukey xoxox

Brody is now having a platelet transfusion as his counts are very low, his temp is going up but only at 37.8. He is very red all over, which they say is normal and he has lost all his hair now.

He also had some blood in his urine, but they are giving him fluids to help fix that, also normal, unless it gets worse then he may have kidney problems.

Brody tonight gets angry quickly and i think his tired and in some sort of pain but he says he is not, so i cant do much, he is just lying around watching movies.

The transplant team told us that Luke's marrow had alot of cells, more than they thought they would get, so this is a good thing to have for Brody's body to accept it. But it still does not change that he has had more chemo and radiation then normal, which can cause more effects and it doesn't change that the cancer still could come back within the 6 months.

We wont see any results until 2 weeks time, then we will see some cell recovery, but it will be luke's cells in Brody's not Brody's cells. Brody's cells will take longer to recover, due to he had nothing.

Therefore today was great but the worse is yet to come, its going to be a long hard battle and we are just hoping for the best.

Thank you everyone for all your thoughts and prayers. xoxox

Rest Day before Transplant tomorrow!!

Brody was a little bit sick last night, he still isn't eating anything and is excited that its only one shower now.
He knows that Luke is going to get a needle and Luke will be brave, he also knows that LUke is giving his bloods to him.

We are not feeling anything as tomorrow is just like any other day, except its Brody's Birthday. Its the next few weeks i am really worried about.

But we would like to say THank you to everyone for their help, support and comments. Its nice to know there is people who care. Thanks again xoxox

Last Day of chemo's.

Brody is still having his 5 showers a day but finishes tonight. He is starting to feel the effects of all his treatments, as he lays around all day, isn't eating much, loosing more and more hair. His head is still quiet red and its sore for him when we have to wash it. He got a headache today but is still begin brave.

The chemo he had yesterday was called Cyclophosphamide.
Effects are - nausea, vomiting, metallic taste in mouth, bladder irritation, fluid retention and confusion, skin colour can darken.
Toady's chemo is called Cyclosporin.
Effects- nausea, vomiting, diarrhoea, burning feeling in the hands and feet, risk of infection, damage to kidney and liver function, tremor, weight gain, headaches, and the list goes on.

Tomorrow they check his levels and make sure he can still go through with Wednesday, but at this stage they are happy with him. They told me buy the end of this week or next week he will be getting worse. So transplant i think will go well, its the effects afterwards that i am really worried about.

LUke had his appointment today and he is fit and ready to go for Wednesday.

My thoughts and prayers are with all my family and Melbourne family as my Pop's Twin Sister Aunty Alison past away this morning at the age of 92. She is a remarkable women and will be sadly missed. We love you Aunty Alison xoxoxox