Monday, July 26, 2004

febrile neutropenia

Jo and I may have pushed our luck on Saturday night. Ethan had had a good week at home and we were confident about going out on saturday night (to the 5oth anniversary ball for the Narre Warren football club) without any problems.  10 minutes after we left, we received a call from Jackie (nurse friend looking after Ethan), temperature was up. She had called the hospital already and they said to send him in. We said to monitor him closely for a bit longer first. Half an hour later, Ethan's temperature was even higher, so Jackie took him to Monash for us. About 2 hours later we received another call saying his oncologist wanted him at the childrens hospital. This was a precaution in case the infection was heart related (endocarditis). Time to leave. Kristen picked us up and drove us to Monash. Jo had downed a bottle of chardonnay before we left so she had the ride in the ambulance with Ethan, while I drove to the RCH. A long wait in emergency, before finally being taken upstairs to 6 east (oncology/haematology). Ethan was still hot and they started anti's, but he was tired and went straight to sleep. We eventually got home to Narre at about 4am.

Ethan's temperature continued throughout sunday and today (39-40). His blood counts were low, this was expected after his last full week of chemo. Blood is taken quite often now to see if the neutrophils (white blood cells) count starts to increase again.

Ethan had a cardiac review this morning and an echocardiogram this afternoon. No problems found. His temperature was coming down this evening and he had sparked up again. We took him back to Monash where he is having more antibiotics, continuous naso feeds and some oxygen. He settled down well.

Wednesday, July 21, 2004

day chemo

Ethan had chemo yesterday. He had to have blood tests first which were all OK so chemo went ahead as planned. He had the chemotherapy drug that affects the bowel and nerves. The oncology team are hoping that it won't have the same results as last time. So far so good.

The oncology team want to give the chemo that affects the heart again but are "nervous about it". They have decided he needs a cardiac review first and once he has been thoroughly checked they will give it. Ethan will be having a cardiac catheter 2nd August (at the kids).  If this goes to plan and they are happy with his cardiac status, he will be admitted for a week of chemotherapy (at Monash). He will most likely have all four chemotherapy drugs. 

The naso feeds are going well. The little man is now a whopping 10.4kg! He has had a couple of vomits but is otherwise tolerating the feeds and some oral intake as well. The main problem with the feeds is keeping the tube in. It came out Monday night and had to be put back in yesterday. If it comes out again before next Tuesday we will either need to go back to have it reinserted or Jo will have to cross the line from Mum to nurse. Hopefully it doesn't come out.

The plan from here is to enjoy the freedom. We have chemo next Tuesday. And then the following week is the catheter and chemo.

Monday, July 19, 2004


On Friday Ethan was good. He was due to have chemotherapy in the evening with discharge planned for Saturday morning. Nothing was going wrong with the little fella, things were as good as they could be. He was well and the girls were well. I was feeling positive and nothing could burst the bubble...until a phone call from Katie. Katie was looking after the girls. They were at Fountain Gate with ambulance paramedics, Adele had suffered a convulsion (most likey a febrile convulsion). The bubble burst!  After speaking with the paramedics, it was decided to transport her to Monash rather than Dandenong hospital. I would meet them in emergency. At this point I didn't know any details other than she was now breathing.  
Ethan's chemo was due to start. I knew Luke wasn't far but I didn't want it runninig with out someone sitting with him.  I also knew he would want to see Adele. I didn't know what to do.  A big thanks to Mon and Kerry for helping out.  Much appreciated.
In emergency a febrile convulsion was confirmed. Adele's heart rate, breathing rate and temp were high and an ear infection was diagnosed to be the cause. After some medication to bring the temperature down and some monitoring we were free to go home.  All was well.  Erin who had witnessed the three minute convulsion wasn't doing as well. She was very scared and didn't want Adele to die. 
On 41N, Ethan's chemo went to plan. He would be able to go in the morning.  I wasn't holding my breath, nothing goes to plan! On Saturday morning Ethan was fine. He had bad thrush and his nappy rash was bleeding but could go with creams and drugs. We had to wait for pharmacy  for the  cream and medications and at lunchtime we were discharged.
Erin was very happy. Her family was one. We went to Yarragon for the night and  Sunday arvo was spent at home. It was good to be home with out the pressure of Ethan being sick.  I can't remember the last time we were all home as a family.  The kids enjoyed themselves and it was good to have them laughing and playing together.  We have a day oncology appointment tomorrow. The oncologists will discuss Ethan's plan and decide whether he needs the other chemotherapy drug. Hopefully this goes to plan and we can spend the rest of the week at home.  


Thursday, July 15, 2004

on the up

Ethan has remained in good spirits and has tolerated the chemo very well. He is pretty happy and cheeky at the moment. He has learnt how to use the buzzer system and call for the nurse. He is very proud of himself when the nurse comes to answer the bell, the nurses aren't as happy though! He also has learnt how to take his own temp and he gets quite annoyed if he can't do it himself!

The pre and post hydration has caused some puffiness but otherwise there has been no major side effects. The antinausea medication has been working and he has only had one vomit. He has been eating and drinking and they have even managed to increase the naso feeds to 30mls/hour. He has also started speech pathology this week. We will be given some exercises to do at home and they will see him every hospitalisation.

Monday, July 12, 2004

cycle 2

Friday night we decided to head to Yarragon for some R and R. Ethan seemed to be tolerating the naso feeds well but he still wasn't eating or drinking. He became pretty miserable and lethargic, and on Saturday he managed to vomit the naso tube out. We therefore spent Saturday arvo in the Warragul hospital. They put the tube back in and were tossing up whether to admit us. With a bit of persuasion we went back to Yarragon. We recommenced the feeds at 1omls/hour with the plan to increase them to 20mls. This didn't go to plan as two hours later the tube came out. We ummed and arred over what to do. We knew he would need to be admitted for some fluid, so should we go to Warragul or back to Monash? We decided to put him to bed and decide in the morning!! On Sunday he was taken back to Monash where he was admitted and IV fluids commenced. He remained pretty lethargic Sunday evening and Monday morning. The IV fluid was increased early Monday and by the time chemo started Monday arvo his blood tests were almost back to normal! Only two chemotherapy drugs were given today. The third was withheld due to his abdo/bowel problems. They are monitoring him pretty closely as one of the chemo drugs is pretty harsh on the kidney and bladder. They have to flush the kidney with a lot of fluid which puts stress on his heart, they also need to check his wee for blood, as well as regular blood tests. Overall he tolerated the chemo very well and is in good spirits. Hopefully he remains like this for the rest of the cycle which should finish Saturday arvo.

Friday, July 09, 2004

radiotherapy finished

The radiotherapy part of Ethan's treatment has now been completed. All went to plan this week with him receiving the last couple of doses on Tuesday and Wednesday. This was a huge relief and meant the doctors could now focus on the stomach/bowel problem. On Wednesday afternoon they increased his naso feeds to 30ml/hour. He was tolerating this as well as eating. His mood had also picked up, he was very happy and full of cheekiness. We were told he could go home either tonight or tomorrow morning. We chose to go in the morning in case things didn't go to plan like previously. That evening Ethan started getting abdo pain again. The feeds were stopped and another xray was ordered. The xray was different to previous ones and indicated that he had a full bowel obstruction. They gave him some pain relief and a surgical review was arranged for the morning.

The surgeons reviewed him Thursday morning and were confused! The xray indicated a bowel obstruction but Ethan presented with no pain and with a nice soft belly. They decided there was no need to take it further. The plan was to start the feeds at 10ml/hour and increase to 20mls/hour. They didn't want to increase them beyond 20mls so that his stomach and bowel could have a bit of a rest. If he tolerated this, we could go home tomorrow.

All went well. We are home for the weekend before chemo on Monday. While we are there they will try and increase the feeds to maintenance level (30ml/hour). If this can't be achieved we are faced with more issues but all is looking good at the moment.

Monday, July 05, 2004

still blocked

Saturday evening Ethan started having episodes of abdo pain. We waited to see if it would resolve but overnight the pain became more intense and more frequent, so early Sunday morning we went back to Monash. Ethan had to have more blood tests and abdo xrays etc. The ileus is still playing up and causing a great deal of constipation. The doctors are trying to move things along with oral laxatives (they can't give any rectal meds due to his blood counts). Hopefully he can get things moving. We are not sure what will happen if he can't. Radiotherapy went to plan today and hopefully will continue tomorrow and Wednesday. They will have to stop it if his tummy swells up again. At the moment they are keeping him fasted so the chances of this occuring are low. We will meet with the consultant tomorrow who will advise about chemo but at this stage it will not go ahead.

Saturday, July 03, 2004


All went to plan...we are finally home. He will have radiotherapy on Monday, Tuesday and Wednesday aswell as day chemo Tuesday afternoon. The following week he will be admitted for the weekly lot of chemo. This will be the long awaited start to the second cycle. 7 months of treatment has already extended to 8. Hopefully he has better luck from now on.

Friday, July 02, 2004

Going well

Ethan has been really good today. He was up walking and he even managed a music session in the play room. Aunt Mon took care of him this morning as Adele and Erin are both unwell at present. We are trying to keep them at a distance. He has had about five poos and is obviously feeling a lot better for it. All antibiotics have been ceased. They are not concerned that the ascites is infected. The surgical doctors also reviewed him and they don't need to drain the fluid. He also had a blood transfusion yesterday, so he is looking pinker and his oxygen levels have picked up. The naso feeds have started and so far so good. If all goes to plan we are looking at discharge tomorrow. (So we need a lot of Goodluck keeping the girls at a distance!!)

Day 4 cancelled

Radiotherapy was cancelled yesterday and today. He'll recommence this on Monday. They want to give his abdomen a rest, for a little while anyway! The naso gastric feeds have also been discontinued. They will most likely be slowly commenced later today. The abdo cramping has eased up now that his bowel is working better. Nothing a big poo and some antibiotics couldn't fix! The surgical team will also review him again in regards to draining the fluid, but at this stage it is most unlikely.