bandana day

The odds are definitely against us - we are still in. Ethan became snotty and started vomiting today (including the tube). He is neutropenic (next to no white blood cells), anemic (low hemoglobin) and thrombocytopenic (low platelets). In other words, a blood or platelet transfusion could be a possibility and further antibiotics, at the first sign of a temperature.



Dr Claire and Ethan



Can't impress the nurses with a tube up your nose!



But these moves will!



A dose of reality

MMC Admission 31

I have decided Ethan doesn't like being at home as we were discharged on Tuesday and readmitted on Wednesday. Either that or he loves Claire and Dzung too much!

During the short stay at home Ethan managed to get the naso tube out and his port site started oozing. We went to the day unit for a review and were admitted from there. He has also lost more weight.

The plan is to have 48 hours of IV antibiotics and then a course of oral antibiotics at HOME! The odds are against us but we can hope.

changing of the guard

Ethan has remained happy and full of energy over the last couple of days. The antibiotics finished today, his blood counts were good considering he had chemo last week so day chemo was given. After this we were given the all clear to go home.

Every few months the doctors have to rotate. It appears that every time we get into a comfort zone, they rotate and we start over again. Today was particularly sad as we said goodbye to Claire and Dzung. These two doctors have been a good support to both Ethan and myself. The care provided by them has been amazing. We have been lucky to have them care for us and we are extremely grateful.



Ethan and Claire.



Ethan and Dzung

During the week we also said goodbye to 'nurse princess Katie' who has also been wonderful. Erin loved going to hospital to see nurse princess and misses her already.



Ethan with 'nurse princess Katie'

We have one cycle of chemo to go. After this Ethan will have all of the tests he had before chemo. This will give the answer to the big question I am sick of.....is the chemo working? After this the port will be taken out and we can start thinking of heart stuff.

Cheers Jo

Peter Mac star wall

Chemotherapy was reduced to three days and as usual he has lost his appetite. The naso tube is in and doing its job so it isn't that big of an issue. The fevers have stopped but he still has to stay to complete the antibiotic course.

Today's blood counts were OK so we were able to go on leave (between antibiotic doses). We went to a kids exhibition at Peter Mac celebrating children with cancer of the last 30 years. There was a 'star wall' exhibiting a star for every child who has had radiotherapy, face painting, balloon art, badges, show bags, toys, giveaways etc. The kids had a ball. Ethan, Adele and Luke all made channel nine news (Erin and Jo are too pretty for the news!).

the latest

Nothing much has changed today. He is still having fevers on and off but remaining happy and playful. He has been pretty demanding of the doctors to take him for walks and to play. Thank god they have nothing better to do!!
One of the blood tests grew a bug so antibiotics have been commenced and his chemo has been reduced to three days. Hopefully when his counts drop he won't! He was a little puffy so he had some diuretics other than my coffee! He has handled the chemo well otherwise.
The naso tube went back in today. He is eating a little, but not enough to maintain weight and he can't afford to get any skinnier.

TLC donation

Today started as usual. When the girls wake, we dress them and put them in the car. It's the one day we have breakfast together. The girls are pretty excited about this as they love spending the day at the hospital. After breakfast, the play therapist came by with some goodies from TLC. TLC donated two boxes of toys for Ethan. One box was full of 'The Wiggles' and some CD's and DVD's and the other full of train stuff. The kids had a ball opening it all. Ethan and I were pretty overwhelmed, but the girls dug in. Erin said it was just like christmas! The day started very well.

Ethan was reviewed and chemo was commenced. He didn't have fevers overnight and the docs were happy with all reports. By late afternoon Ethan's temp went up and he was rigoring. He was reviewed and more blood tests and a snot test were done. Apart from the temperatures and looking pretty pale, all other obs have been good. He has remained happy, active and he is still eating and drinking! This is very unusual but very pleasing.

Overall he has had a great day playing with his sisters and all of the new toys.

chemo part?

The week at home was pretty good. Ethan even started to eat and drink, so I took the naso tube out to see if his appetite would increase more. I was worried about him becoming dehydrated and losing weight but it was worth a go. The kids loved being home and were all pretty hyperactive.

We went back yesterday. The usual routine, have blood tests and then go up to the day unit for assessment and to start the chemo before being admitted on the ward. His blood counts indicated he wasn't dehydrated at all but he had lost weight. It was still good to see him with out the tube eating. His other blood counts were all OK so chemo was going ahead. They were getting ready to access the port to start pre hydration when all of a sudden Ethan felt hot. I took his temp, 38.9. I Couldn't believe it. He had been so good at home, his counts were good, how can he be sick before chemo? The port was accessed and more blood tests sent off.

We were reviewed and it was decided that he wasn't well enough for chemo, there was no need for antibiotics, and that they would review him tomorrow. A couple of hours later, he had another temp, this time even hotter, 40 degrees. Antibiotics were commenced.

Hopefully he will stop having temperatures and chemo can be commenced soon.

looking good

On arrival at the ward yesterday we were informed Ethan was very hyperactive. He wanted to walk so the doctors took him, he wanted to play so the doctors played with him. Luckily they weren't too busy and could do this. He had a pretty good morning and was looking a bit tired after lunch. In the afternoon we put him to bed and decided to have some lunch and time out. We came back to be told he didn't sleep. He had been hyperactive and was scooting around the ward. This was a shock and hard to beleive until he came running around the corner with no attachments! He looked really good and had some colour in cheeks. It was the best I had seen him for a long time.

While we were gone, they ceased all antibiotics and took the port access out. They did the port dressing, gave his last injection and took the needle thing out of his leg. They had also ordered his discharge medications. We were going home.

He was looking good and I was positive things would be good at home. We were pretty excited. Ethan walked to the car and once he was in the car seat he started coughing and dry retching. We hadn't even left the place. We still took him home hoping it was a once off. He was good for the rest of the evening but I was still hestitant to run the naso feeds overnight incase he was sick.

He had a reasonable night. He woke a few times but was easy to settle. I hooked up the naso feeds this morning and will bolus them during the day. He is pretty good at the moment so hopefully we can stay out until next Tuesday.

rack up another admission

Ethan remained happy and active at home but he had a vomiting issue. In the 48hours we were home the naso tube had to be reinserted a handful of times and I was concerned he was getting dehydrated so on Friday I took him back. On arrival at Monash he also threw in a temp. He had some blood tests and was admitted for antibiotics and feeding issues.

He has had a blood transfusion due to a low hb. This helped him look a little better but not a huge improvement like in the past. He has had borderline temperatures but nothing too hot and he has had only a couple of vomits.

The girls and I had a sleep over at the hospital last night. This was pretty exciting for the kids but very tiring for me. It was good to have three excited kids together without the pressure of how Ethan will cope. It is a shame it had to happen at hospital and not at home though. Thanks to all the nurses who allowed this to happen and the PSAs who provided meals.

I am unsure of the plan from here. We will chat with the oncology team tomorrow and go from there.



Ethan's nurse friend



tough nut Ethan



Kids enjoying their hospital sleepover with Ethan

home

Everything went to plan today. They inserted an IV, did the blood tests and gave the chemo. We were then given the all clear to go home.

His counts are still low but could be worse. I will continue to give him the daily hormone injection and hopefully he will avoid any fevers. The port site is also looking better and should heal before the next round of chemo. It needs a daily dressing but nothing complex.

We should be home until review next Tuesday and then home for the rest of the week. Fingers crossed.

daily dressing

Ethan was much the same today. Active and happy one minute, fast asleep the next. He has lost weight over the last couple of days and is now 10.5kg. The nasogastric feeds were increased to 45ml per hour to help maintain it.

The runny nose isn't any worse. The daily hormone injection he is having to help boost some of his counts must be working! The wound is even starting to look better. The daily dressing has made a huge difference and it is simple enough for me to do at home.

The short term plan is to insert an IV tomorrow and take some blood. He will then have day chemo and we will go home. We should be home for a while but I am not holding my breath.

We are going to have a meeting about reducing the length of chemo. There is concern about his cardiac status at the moment. His oxygen levels are running low most of the time, he has began sleeping a lot and he is sweating like crazy. All signs of cardiac stuff but this could also be chemo related. The little man is to complex to understand. The meeting may not happen for a few weeks as the next couple of chemo cycles are not cardiac toxic.

infection

The chemotherapy continued until Friday afternoon. The nasogastric feeds were kept running as well. There were concerns about the high amount of fluid he was recieving but with some diuretics he handled the amount well. As a result his weight increased to a whopping 11.8kg. But as usual, to every up there is a down....the new port site was showing signs of infection. He was commenced on antibiotics and we were all keeping a close eye on it. By the end of the week it was looking worse and he was starting to have low grade temperatures. He was also pretty snotty. A snot test was taken and more antibiotics were commenced. This created a dilemna, how do we go home on antibiotics? It was decided to remove his access and start oral antibiotics. We were discharged on Sunday afternoon with a review Monday at the day oncology unit.

Sunday night at home was horrible. Ethan had a couple of vomits and diarrhoe. He has also started to sweat heaps. So only a few bed changes!

At the review we found out that Ethan had grown a little bug in his snot. Nothinig major but his blood counts are due to drop and the unknown is around the corner. So it could become something big. The port site was also looking worse. It had opened a little more and requires daily dressings for a while. It was decided to admit him rather than travelling back and forth.

He is still happy and active but at the end of these short bursts he crashes into a heavy sleep. This also happens when he is protesting about blood tests or procedures. Yesterday when they were reviewing him, he tried to protest but fell asleep for a few hours instead. During his sleep we managed to pull his dressing off and have a good look at what was happening without him stirring. His blood counts haven't even dropped yet!