A day of treatment at home!!

We had the nurse come and visit us at home today. Seth has taken well to the chemo again so far. He has just had some nausea, but the meds to combat that are working well. We are off to Campbelltown Hospital for the next two days for treatment which is a nice change from going to Westmead all the time. We have uploaded some photos to view including the buddah shot.

Big Day Today

A very long day for Seth today, he was hooked up to a drip for 6 hours as part of his chemo. He did really well and was very patient. We left home at 7:15am and arrived back home 11 hours later. He didn't complain once.
He has a very intensive 4 weeks of chemo ahead of him - 4 days of chemo a week for 4 weeks via the central line and a chemo tablet every day. Luckily, we can get some of his treatment at Campbelltown Hospital which will save us a lot of time and a lot of petrol.
A couple of Bulldogs came for a visit to the clinic promoting Camp Quality today. Seth was very quick to tell them he was a Dragons supporter and Brett had a nice time promoting the Dragons.
Seth is starting to lose those gorgeous chubby cheeks and that big fat tummy since being off the steroids. It is happening quite quickly and his appetite is finally decreasing with it as well. We have some great shots of him at his biggest to upload. He looks like a little buddah.
He is now having new chemotherapy drugs so we aren't sure how he will react with these. One of the drugs has a tendency to cause fevers, so we will be on the lookout for them as we have to get him to hospital within the hour. Another can cause bleeding from the bladder. Hopefully, we sail through these next four weeks without too much drama.
We are still waiting the results of the tissue typing to see whether any of us are bone marrow matches. We got a call about some information they were missing today, so I know they are working on it and we should hear the results by next week.

We begin the next stages of chemo.

I have spoken to our oncology nurse that takes care of all the oncology kids who are outpatients. She has contacted Seth's oncologist on our behalf and has found out some answers for me. Seth will begin his next stage of chemo on Monday. They would be making the same decision whether he was in remission or not in remission. The small amount of cells they did collect from the marrow, although still too small to give us a definite all clear, shows no signs of Leukaemia. Phew...
The nurse (Daphne) met me at Campbelltown Hospital today to introduce us to the Pac's team there. They are some wonderful nurses and I am just so relieved to be able to get some of the treatments there rather than have the big commute to Westmead all the time.
Campbelltown Hospital has liased with Westmead and have all of Seth's information now, so we are able to get blood counts, blood transfusions and some of the more minor chemo's at Campbelltown. If Seth get's a temperature, we are now able to take him to Campbelltown where they can begin treatment within the hour (which is important), rather than us getting him to Westmead which takes longer than an hour to get to. If he requires more treatment, they will then transport him to Westmead from there.
This is a huge relief and a big help as his next stage of chemo is a 4 day treatment. We begin Monday at Westmead for a 6 hour drip which Campbelltown aren't authorised to give him, Tuesday they send a nurse to our house, Wednesday and Thursday, I take him to Campbelltown for them to give the chemo. Then we start all over again the following Monday along with a Lumbar Puncture. This treatment goes for 4 weeks. Then we will be getting close to day 79 and we will be getting his prognosis.
Seth went to school for the first time today for 1 and a half hours. The nurses had been out to educate the teachers and his class and I got a call on Thursday advising me it was now time to send him back to school. We had tears in the morning as he was worried about how different he looked and about the kids in the playground being rough with him. So, we made a deal, I stayed in the car with him till the bell rang, then I walked him to his class once everyone was out of the playground. He came out of school loving it and wanted to go back tomorrow. I had to disappoint him with the news that it was Saturday tomorrow. It is a bit scary sending him out with all the germs that float around schools, but they reckon it is the right thing to do. I just hope it does him more good than harm. So, I will hold my breath again and hope he doesn't pick up anything harmful. We are to take it a day at a time and if he is feeling well, we send him for a couple of hours so he keeps contact with his class and keeps up with his school work.
We will keep you posted as to how we go with Monday's treatment. These particular chemo's have a tendency to induce a fever, so fingers crossed he comes through them okay.

No Remission Still.

I just don't know what this means. Good or bad??? Day 33 is so important to be in remission and yet it is now day 42 and they still can't give us remission. He still doesn't have enough cells to give a reading. I am so upset, confused and deflated. Just not knowing is killing me. I have been trying to find out what it all means, I am waiting for a call from a doctor of some sort to explain what this means. It is called Hypocellular. Again...just waiting for news of some sort. I know alot of people have been waiting to hear what the results are this time and I will post what this all means once I know myself. Be back soon with some answers I hope.

No Remission....YET.

We didn't get the news we were hoping for today. They can't give Seth the all clear yet as even though his blood counts are increasing, his bone marrow hasn't grown back enough for them to tell whether any leukamia is left to grow back. So... we have to be patient and wait another week to see whether the chemo has worked.

We were told that it wasn't an expected reaction, but it also happens now and then and although it isn't nice to have to wait, it also isn't devastating news. It just happens to some kids, they don't know why and each child reacts to leukaemia differently and to the chemo differently. Patience is a virtue!

We have the rest of the week off which is a blessing as Seth is turning 7 on Thursday and Brett's birthday is on Friday and we are just soooooooo tired. I can't remember being so tired ever. We will be going back on Monday for a blood count and Wednesday for another bone marrow aspiration. Hopefully we get the good news on Thursday next week that he is in remission and they will start him on the next phase of chemo.

They said that it is very, very important with T-cell patients that they are in remission before starting the next phase, so they are being very vigilant and making sure things are done by the book and are not rushed through. I feel like we are in very safe hands with our doctors.

The final needle and what a mess!!

Today, Seth had his final needle and the plan was that whilst he was under GA for his bone marrow and lumbar puncture they would give him the needle. All was going well and Seth was put to sleep no trouble (we had to record it on our phone for him to look at later so he could see how quickly he falls asleep - very cute). They wheeled him out after the procedure and tell us that they haven't given him the needle because the pharmacy didn't have it ready. We were so upset, because we had told him over and over that he wasn't going to have to feel the last needle. That was the only good thing to look forward to today. We tried to keep him asleep for as long as possible in the hope they would get the needle to us before he woke, but alas, no luck! He popped his bald little head up about 15-20 minutes after they wheeled him out and the first thing he said was "I've had enough of sleeping". We were not looking forward to telling him the news. He was so sad and our hearts where just breaking. So, we had to hang around for another hour until the needle came, then we had to hang around another 45 minutes to see if he gets a reaction. We have to be back at hospital tomorrow at 9:30am for a new set of chemotherapy drugs. Tomorrow's chemo will take 6 hours to transfuse and hopefully he doesn't end up having a bad reaction. We also get the BIG news as to whether he is in remission. Hopefully he is and we can continue as planned. We added the video of him going to sleep. Very cute.

Seths shaveathon

Today we had the shaveathon that Sethy had been so looking forward to and as you can see from the photos we had quite a bit of fun with it. We put everyone's names into a hat, came up with some different hairdo's and Seth got to pick a name and a hairdo for each victim. We had cuts like friar tuck, Mr T, mohawk, mullet to name a few up for grabs. We will upload the rest of the photos to facebook soon for those that are interested. We have had a lot of support from a lot of people, some people who have never even met us. We are very thankful for their support and also for Jay who came up with the idea and turned it into a fundraiser. We would like to thank everyone who shaved their heads and turned something that can be quite a daunting part of cancer into something that was happy and fun. There was an awful lot of laughter at our house today. It was lovely to meet up with Chris. E and his wife Tina and their gorgeous daughters after not seeing Chris for many years. They have rustled up support from Tina's family in New Zealand and Tina's dad was even shaving his head today. We are so blessed to have so many wonderful people willing to help any way that they can.
It hit me today that he really does have cancer, now that his head is shaved, he resembles the kids with cancer now. I suppose I can no longer deny it now he looks the part. It was much harder to believe when he looked normal and just seemed a bit tired.
Well, we have had a busy few days, with hospital on Friday, Annie's 60th on Saturday, Head Shave today and we are at the hospital from 7:30am tomorrow for bone marrow, lumbar puncture and chemo. It is day 33 of treatment and Seth is expected to be in remission at this stage. So, we will be holding our breath and hoping that all his test results come back as the doctors expect so we can continue with the planned treatment. The doctors have stressed that to them day 33 is a very important day for them in being able to predict Seths prognosis, so we want good news.
A couple people have mentioned that they have had trouble adding comments. That problem has now been rectified, so please feel free to add your comments.

Another day, another needle!

We went back to the hospital today for more chemotherapy both needle and through his central line. Thankfully today was the last day Seth has to go through the pain of the needle. We are back in the hospital bright and early (7:30am) on Monday for another bone marrow aspiration, lumbar puncture and chemo into the spinal fluid. They will also give him his final needle whilst he is under the anaesthetic so he doesn't have to go through the pain one more time. We are grateful for small mercies. He is weaning off his steroids and will be off them completely in a little over a week. Then his chubby tummy and cheeks will begin to deflate, his appetite is expected to go down to next to nothing and I will be begging him to eat. He will also be starting some new chemotherapy drugs after the Monday, so hopefully he handles them just as well as the 4 he has been on already.

Seth got a really exciting package yesterday from the St George Dragons after Annie (Cheryl) wrote away to the football team explaining his sickness. He was surprised with a beanie, a t-shirt, stationery set and a card. He can't believe how many people care about him and want to help. We have a photo uploaded of him wearing his t-shirt and beanie.

Seth drew a thank you note for the ladies at Annie's work who put together a raffle to raise money for him. So we have uploaded a photo of that as a thankyou for everyone who has supported him and us.

We took Seth to see Karate Kid at the movies yesterday as a special treat because his sisters were away at a birthday party. He loved it. It was a great movie for both adults and kids. It was nice to do something fun for him and take his mind off his sickness for a while. It is good for the soul to do something normal. I no longer take normal life for granted. Life can change so quickly and then all you crave is "normal" again.

You will also see some photos of the clown doctors who came into Seths room a couple times during his hospital stay. They are a whole lot of fun for both parent and child. We brightened Seths room up with a whole lot of balloons, thanks to Shane and Dan (Seths uncle and aunty). It was a real highlite for Seth to muck around twisting all sorts of weird and wonderful shapes.

Another visit to the hospital today but this time with the whole family. We all had to give blood so they can test us for compatability in the event that Seth may need a bone marrow transplant down the track. What a drama with Taylah and Sienna the poor things, as you can see by the photos they were not real happy about it but they understand that it may eventually help their brother. They were given Angel Cream on their arms, which numbs the skin so they can't feel the needle. However, they both had an allergic reaction to the cream so we had to wipe it off after about 15 minutes. Sienna's skin went red but Taylah had a bigger reaction, with raised welts and tiny blisters. Luckily the numbing had worked enough to get them through with only a little pinching feeling. Although the drama queens were out in force today and Taylah had to lay down so she didn't faint and Sienna screamed when she saw the needle. It was a big deal for Sienna and she hasn't stopped talking about it or showing off her wiggles bandaide to anyone who will look and listen.

We had expected to be in for a big day as Seth was quite pale and a little tired and we were expecting his red blood cells to be right down which would have meant a blood transfusion but he was right on the borderline and the doctors suggested we wait till Friday and see how his counts are then. That was a relief as Sienna was sick of being at the hospital by the time she had done her thing and when Sienna is bored, mischief is on it's way!

Seth's hair is thinning out and getting a bit patchy, so the head shave organised by Jay on Sunday comes at a good time. Watch this space for photos of the bald boyz on Sunday. Should be fun. Seth is really looking forward to it which is a really positive thing.

I have uploaded a photo of the quilts that were donated to the kids.

We had a good day today, we were expecting to have to stay for a long visit as we were told he would probably need a transfusion, but his counts weren't low enough. We only had to have the jab (which he absolutely hates, but deals with so bravely) and the tow chemo treatments through his central line. We were out of there late lunch time after getting there at 9am - that is a quick day.

They had Seth booked in for a lumbar punctur and bone marrow aspiration on his birthday (15th July) and for the first time during all of this he dug his heels in. He just refused to be in hospital on his birthday (don't blame him), so they changed it to the 12th for him which was great news.

Seth is getting the chubbiest, most gorgeous cheeks and such a round little tummy. It is funny to see our normally skinny little kid grow and grow and grow. He has such a huge appetite at times and craves the funniest things. The tops three foods at the moment are: twiggy sticks - he just can't get enough of them, talks about them all the time, would have them for breakfast if I let him. Doritos (must be in the red packet) and chicken tacos - he ate about 5 of them, we ran out of them and he was still after more to eat. One morning he ate 3 poached eggs on toast! I don't know how he doesn't throw it all up.

He is starting to have difficulty taking his pills, so we are now crushing them and mixing them up in chocolate yogo. I thought I would try something different and put them in some yoghurt, but that just made him throw up. So, we are sticking with the yogo. I don't know what I will do when he gets sick of having that 3 times a day!

We had a real highlight last week when Seth and the girls recieved a beautiful quilt each. A wonderful charity sews these fantastic quilts and each child in oncology gets to choose one for themselves and one for each of their siblings. The kids love them, they line up on the couch with their own quilts over them and watch tv all nice and snug, and have them on their bed every night. Such wonderful charities are involved at the hospital. I will write more about the other charities at a later date and will post photos of their quilts as well.

Over and out.