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.

Back in Hospital again!!!

Well i knew it was going to happen on Friday, as Brody's temp was 37.5 and if its that or over i knew he will be in for something as he never gets that high, only when he is unwell. A least we got the weekend off. So we are now set back up in the isolation room again.

Brody and i come in to clinic this morning, knowing that we would be staying as his temp went up before we got there. So he had a nose test, sharpie and they took bloods from his lines. The doctor's didn't say much as we have to wait for results. But don't think its much as his temps not that high and they have started the medications early. They did joke that they think Transplant is the new cure for Autism. LOL. Well he is alot slower but i can still see the Autism in him.

This is what has happen for the past 11months and we still happen for some time, so i am getting used to mine and Brody life been run by his illness. Its what you have to do as a parent for your child, so i am know super hero, i am just a mum that loves her son very much. xoxo

First Day back at home!!!

Nearly thought that we were going to go back into hospital as Brody's temp went up to 37.9. When it gets to 38.0 we have to go back. It come back down to 37.4, so i am hoping it stays that way.

Brody was very quite and did the normal things we did in hospital such as painting, DS and watching movies. AS he still doesn't have much of a life. He is not aloud to do anything for another 6 months, so he is stuck at home. We still have to follow the hospital rules.

I have less time to write things every day as i have to help out around the house, so please don't worry if i have missed a day or two. Thanks again to everyone for your support.
A huge Thank you to Aunty Pam, David and Uncle Alex. xoxoxo

Day 38- Post Transplant! HOME!!!!

Wow, we started the day with our lovely nurses from night shift and day shift coming in and getting us out of bed to have a farewell and photo. Thank you so much to all the nurses as we have felt like a part of your family and will never forget what you all have done for us. We love you all. xoxo

Then Brody had his last sharpie for now, and he did such a good job as he didn't even cry. So proud!! The doctor's come in and wished us luck as some patients end up coming back straight away or days or week later. They also stay in longer then what we have stayed, so hopefully all will go well. Cross your fingers!!!

After collecting all the medications, supplies, machines we finally got to go home, we arrived home at 2.30pm. Bill turned out a little bit later, as he was so surprised, he hasn't seen Brody for the whole 10 weeks.

The photos are of all the great memories and all the supplies we need. Hope you enjoyed them. Brody and i also support Daffodil Day, for all how had cancer and have cancer. We are thinking of you all. xoxox Think it was a great day to leave the hospital, it might be a good sign.

Thanks everyone for your support and comments, it means alot to us as you have got us through this and kept our hope high. THank you!!! xoxoox