cardiac catheter (and the wiggles)

The bone scan is all clear :)

Ethan was pretty good over the weekend and was admitted monday morning for the cardiac catheter. He had the usual pre op tests (echo, ecg, chest xray, blood cross match and fbe) before going under at 2pm. A catheter usually takes around 2 hours but after 4 hours a nurse came out to say things were fine but progressing slowly. Half an hour later, Ethan's cardiac doctor came out and said it took a while because they had been trying to balloon a narrow part of his pulmonary artery. He told us Ethan's pulmonary artery has grown well but there are sections closer to the lungs which are narrow and will have to be looked at with either more catheter procedures or surgery. There is restricted blood flow at the conduit also. He says things are pretty positive and heading in the right direction, but they need to get the blood flow to the lungs right before they can close his VSD.

All the information gathered from the catheter will be taken to the cardiac surgeons on monday for discussion and they will let us know what they decide soon. It is likely that cardiac surgery will be required early in the new year.

Ethan recovered slowly from the lengthy procedure, as he was pumped with more fluid and had extra contrast in his system. The contrast slows kidney function which stopped him weeing. An in/out catheter was given to get things going again, so discharge was wednesday morning.



Never a big fan of the ECG



He loves a sleep during an echo



Rode the bike between appts at the RCH





Waiting around with Bob and Scoop



Spaced out after the midazalam pre-med

For the moment, our next appointment is on the 4th of January with Ethan's onc doctor.

We were lucky to be offered 4 sets of tickets to the Wiggles Christmas show at Rod Laver Arena on thursday. Thanks to Peter Mac for the superbox seats and the Australian Cancer Institute.

post port removal

Ethans temperatures persisted. He had a horrible day on Tuesday. He was febrile all day which made him pretty miserable. He had become fairly snotty and had started vomiting. We found out that the CT was all clear, there was no signs of cancer. This was great news but I found it hard to be excited as he was so unwell.

The suture line from the port removal looks really clean and good. The surgeon cut away the horrible skin and put it back together nicely. The sutures can be removed on Monday.

Ethan had a bone scan this morning. This is the last post chemo test, for now anyway. I haven't heard anything yet but we are expecting good news.

He is still having the odd temperature and is vomiting a bit but nothing we can't deal with at home. So this afternoon we were discharged. Hopefully he gets better before the cardiac catheter on Monday.

goodbye port

As usual nothing goes to plan, well almost nothing.

Ethan developed a temperature yesterday. The port site was looking worse, there was a hole in his chest and the port disc was trying to remove itself! We were admitted for antibiotics and a surgical review today.



The port site- with black disc visible!


The surgical team came and decided the port needed to be removed before it fell out. This was originally booked for Tuesday with his post chemo scans. The doctors didn't want him having two anaesthetics so were busy organising it to be done under the one anaesthetic today. This was the part that went to plan. He went to theatre and while he was still under GA was transferred to CT and then transferred back to recovery. He took a while to wake up, but was happy playing and walking around later today.


On Saturday went we enjoyed our first Challenge Christmas Party. It was huge, they had rides, lots of food, animals, Santa and more rides. The kids had a ball.



Adele and Ethan flying the plane



Erin had to go on the Ferris Wheel



Ready, Set, Go!



It's a long way down...



but I'll have a go!





Stay off the road with this one driving!

good progress

Ethan had his oncology review on Tuesday. Everything is going well. He has stopped vomiting and is tolerating the nasofeeds well. He is even starting to eat a little on his own. His blood counts have also picked up. The only negative is the port site. It has opened up more and you can see the disc.

He will be admitted on Monday afternoon. The post chemo tests and the removal of the port will take place on Tuesday. Fingers crossed.

The following Monday he will be admitted at the kids for the cardiac catheter. After this he shouldn't need any more hospital admissions until the new year.

cardiac review

Ethan was discharged yesterday as planned. He is still vomiting so we are staying in close contact with the dietitian. He is otherwise going pretty good.

His cardiac review was today. He had the usual ECG and echo. From this, it was decided a Cardiac Catheter is needed. This has been booked for the 13th December. He will need to stay overnight this time due to his current medical status.

The catheter date interferes with the post chemo tests so we are unsure whether they will take place on the 14th.



Thanks Eleanor and good luck for next year



Bashing the drum



Ethan enjoyed the visit by "Sovereign"

still here

We are still in hospital. The plan is for discharge tomorrow; if he remains afebrile.

Our cardiac appointment is now this Thursday. This should help ease our minds about his current cardiac status and the plans from here on.

His post chemo tests have been booked mid December. They are trying to organise having the port taken out on the same day but are unsure whether it can be arranged. This would mean one anaesthetic rather than two.

more febrile neutropenia

Ethan developed a temperature on Wednesday night or should I say early Thursday morning! Ethan and I had a big night in emergency before being sent up to the ward. They haven't found the cause of his infection but he is snotty, he has a cough and the port is looking pretty crappy.

The night nurse accessed his port for blood tests but it didn't back flow. She said it flushed well and the morning nurses could try later. The morning nurse tried but wasn't successful either so the access was removed. After the needle was removed the port leaked a lot of fluid and some of the swelling went down, apparently the access wasn't in the port, lucky he wasn't having chemo through it! The suture line is also breaking down more.

A surgeon came to look at it but with his counts being low, I told him he wouldn't be touching him. The oncologist came later and also agreed with this.

The plan is to boost his counts, (He is having a daily hormone injection for this) Boost his weight, which is slowly progressing and to continue antibiotic therapy until the fevers stop.

We asked for day leave today to go to the Southern Cross Christmas party at the zoo, we were told we had too chances; buckleys and none! The girls and us went and had a good time. Thanks to the Bells who kept Ethan entertained!



The girls at the zoo



The princesses opening their Christmas present



Ethan playing with his Christmas present

weight issues

Ethan was reviewed yesterday. His counts are still low, and he has lost 800g in 3 days. The plan is to keep him out of hospital until review next Tuesday.

I met with Erin the dietitian and hopefully I can slowly upgrade his feeds over the next couple of days. He managed some paediasure yesterday and if he tolerates it today I can add some polyjoule until he gets back to his full feeds.

He is managing quite well at the moment so hopefully this can be achieved before he loses more weight.

post chemo weekend

Ethan finished post hydration last Thursday. This would usually mean discharge but he was starting to be short of breath and blue looking. A blood transfusion was ordered. Hopefully this would allow us to stay at home more than one night!

We were discharged on Friday. He was still vomiting a little but nothing we thought couldn't be managed at home. We decided to go to Yarragon for the weekend.

Ethan continued to vomit on Friday and Saturday. We were getting nowhere; Ethan would vomit the tube up, I would put it back down, Ethan would vomit the tube up. Ethan was taken to the Warragul hospital with dehydration. The doctor wanted to admit him and start IV fluids but I didn't think this was needed, so with a little persuasion I inserted the naso tube and started gastrolyte. The peadiasure feeds were stopped. We were discharged with the plan to go back if the vomiting persisted.

He managed to have enough gastrolyte to rehydrate. I am guessing he has lost a lot of weight this weekend. The peadiasure has polyjoule added; the most calories they can do via nasogastric feeding. With this running continuous he hasn't gained a lot of weight (11.1kg on discharge), so I can't imagine him holding his own without it. Hopefully he will tolerate it soon so that he can begin to bulk up.

We have managed to stay out of hospital since Saturday. He will be reviewed tomorrow and hopefully a plan as to the next steps will be decided.

end of chemo party

Ethan has managed quite well during his last cycle. He has had a few vomits but nothing major. The doctors have kept a close eye on him. During chemo he has to have high amounts of fluid to flush his kidney and bladder but not too much as it puts pressure on his heart; it's a fine line.

Today was his last dose of chemo (we hope!). We had a party on the ward to celebrate. There was party food, balloons, streamers, etc; the usual kid party stuff. During the morning Erin and Sonia (Challenge worker) made invitations and decorations. It was huge!

Ethan received a few pressies from the nurses and doctors, which he loves. It is all thomas stuff of course!





"Adele, that's gross!"



Eleanor & Annette - Ethan's muso friends



"Thanks Claire and Dzung"

cycle 8

Ethan had a blood transfusion last Friday. This made him more comfortable and allowed the oxygen to be weaned. We were seen by Sarah and Dr Jim agrees he should have cardiac intervention sooner rather than later.

The last chemo cycle has started. It has been reduced to 3 days rather than the initial 5 days. He has had a few vomits and has lost weight but he is doing really well considering everything.

We managed day leave on Sunday. We had a family day with Thomas. Thomas the tank, the fat controller, and grumpy the green bus have a show at puffing billy. The day includes a ride on Thomas and grumpy, face painting, a petting zoo etc. Despite the horrible weather we all enjoyed ourselves. It was good to see the kids so excited.



In anticipation



Thomas on the turntable



Adele actually sharing food!

cardiac concerns

Ethan's vomiting settled and he was looking OK so we were discharged last Sunday with a review planned for Monday. On Sunday night he tolerated the feeds well but was having mild temperatures, and looking a little bluer. We were admitted Monday.

He has lost more weight, breathing faster especially with exercise, sleeping more, and looking bluer. Blood tests indicated his Hb was still a little low but a blood transfusion wasn't needed. He was commenced on antibiotics for the temperatures and a cardiac review was ordered.

Sarah (Cardiac doctor) who sees us out at Monash reviewed him and ordered an echo. The results of the echo were to be expected....his cardiac condition has progressed and needs attention.

The plan:
* a blood transfusion to help improve his exercise tolerance and hopefully make him more comfortable (Having this now).
* stay in for oxygen as required (currently on .75L)
* the LAST cycle of chemo next week
* she will talk to Dr Jim (cardiac doc at kids)hopefully tomorrow and then let us know of the outcome.

Cardiac intervention will be sooner rather than later. If he didn't have cancer a cardiac catheter would have been done in July/August so we are lucky we have got this far before intervention. It would have been a nightmare if chemo had to be stopped for cardiac reasons. We will be in hospital for a while! Readdress mail to: c/o 41North, Monash Medical Centre!

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!

new port

Ethan had a new port inserted yesterday. This went to plan with no complications. His third nipple is now positioned on the right! He handled the surgery well with the only problem being a little pain but nothing some pain killers couldn't control. He was reviewed this morning and chemo was commenced this afternoon. He put on half a kilo in weight due to all the fluid so some diuretics were given to help flush it out. They are trying to run his naso feeds with his IV fluid so that he will continue to put on weight. (The naso feeds usually get turned off while he is having chemo). Not sure how this will go considering he has already puffed up.

He had't had chemo for a while so his mood and energy levels have been through the roof. The girls and their mum didn't know what hit them over the last couple of days. Underneath his paleness and beanies is a very active boy!! Look out world when this is all over!!

The highlight of today was the opening of a children's playground at the hospital. It wasn't the playground that excited us but the fact that we were on tv. Ethan was on the channel 10 and 7 news. It was pretty weird seeing him on tele but bloody exciting! We also got to meet Andrew Gaze, which was pretty cool. He had a bit of a play with Ethan and we had our photo taken etc.

dodgy cvc line

The CVC line hadn't been in 24 hours before it occluded and had to be removed. The oncology team wanted a line that would last a couple of weeks, but because the anaesthetist inserted a CVC, which can cause a fair bit of scar tissue and possible problems with port insertions, I was pretty pissed off for a while! An IV was needed to continue the antibiotics. The ward doctor had a couple of goes before calling the greater skilled ICU doctor. She was successful on the first go. The antibiotics had to continue for one week. At this stage we weren't sure about chemo. We knew a peripheral IV wasn't appropriate for chemo but weren't sure what was going to happen. Were they going to try a PICC line again or wait for a new port, and if so, how does delaying chemo affect the overall treatment success?

We transferred back to Monash on Sunday night. We spoke with the oncology team Monday morning. The antibiotics needed to continue until Wednesday night and if Ethan remained afebrile we could go home for a couple of days before coming back into hospital for the insertion of a new port and some chemo. The highlight of the stay was getting the king size room, the one with a double bed and a fridge. There was plenty of room for Ethan to play with his trains and to swing a cat if he wanted!

His weight is still hovering. He was 10.8kg on discharge. It has been hard with him being acutely unwell and fasting for anesthetic. Hopefully we have been able to fatten him up before tomorrows anesthetic and chemo. He hasn't been eating much so I am not holding my breath.

septic shower

Yesterday I decided to take advantage of being home and take the kids to playgroup. They had a ball especially Ethan who hadn't seen a slide or that many activities for months. When we got home the carelink nurse was waiting. The antibiotic was given without any complications. Not long after the nurse left Ethan decided to pull out the nasogastric tube. I managed to get this back in with nurse Erin's help! After lunch Ethan appeared pretty tired which I thought was to be expected after the big morning. He was coughing a little more than normal while he was asleep which was concerning a friend, but thats just Ethan. Little did I know that the next time I was to check him he would have a heart rate of 190, respiratory rate of 65, temp of 40.5 and was pretty unresponsive. He was the flatest I had seen him for a long time. An ambulance was called and we were at Monash before we knew it. The oncology team knew we were on our way and met us there. It was thought that he had had a septic shower. Bacteria from the port was pushed through the port into the heart and lungs. They inserted an IV, took some blood, and commenced antibiotics and oxygen. We were then transferred to the kids.

The ICU doctors assessed him on admission and kept an eye on him overnight. Today he had an echo to rule out any heart involvement. A nervous wait but we were given the all clear. The doctors wanted the port out ASAP so he went to theatre at 1:30 today. The plan was to remove the port and insert a picc line. The anaesthetist explained that it wasn't as easy as it sounds and if he couldn't get it in they would put in a CVC (central venous catheter; an IV straight into the big vein in your neck). The latter was achieved. They tried for a PICC but couldn't thread it up his arm. The anaesthetist didn't want to prolong the anaesthetic, it is too risky with him being septic, so they opted for the quicker option and put in the cvc. Hopefully this will be efficient enough for the next round of chemo and any complications that may arise from it.

He recovered well and was back on the ward a couple of hours later. His temperatures have settled down with antibiotics. Not sure how long he will need these for or how long we will be at the kids or when the next chemo will be.

port infection

The blood in Ethan's wee lessened over the course of the week. His fluid levels remained high to flush the bladder, and by the end of the week we couldn't see any more blood. I don't think the surgical registrar was pleased with Ethan weeing on him, but it showed us everything was improving!

The IV antibiotics were continued via the peripheral line until Thursday. On Thursday, the doctors decided the port had to be accessed. The plan was to put antibiotics directly into the line to kill off more bugs. The port was accessed, bloods taken, and the antibiotic slowly injected over 30 mins. This went to plan, there was no septic shower and no need for the emergency drugs!

His oxygen levels remained borderline and with his nose being completely blocked I decided that oxygen via nasal prongs wouldn't be helping, so I took them off. The doctors agreed with this and his levels remained borderline without oxygen.

The only reason Ethan was still in hospital was for antibiotics. The doctors decided we could be discharged with carelink nurses. Carelink had other ideas though. They weren't taking new admissions for the weekend, they didn't have the funding, blah, blah, blah- but we have Claire, the oncology resident who stands her ground. We were discharged Friday evening with daily carelink nurses. The plan was to go back Tuesday for a few days of chemo (providing the port was responding to the antibiotics).

On Saturday, it was confirmed that the bloods taken from the port were still growing the infection. The plan was for more blood tests and a review on Tuesday.

We had our review today. It was confirmed the line is still infected. It will be removed on Friday. A semi permanent peripheral line will be inserted so chemo isn't delayed too much and then in a few weeks, another port will be inserted. An ultrasound was ordered to check the line. They weren't expecting to see anything, it was just routine, but as usual another hurdle! They found a clot. Not sure what this means and what impact it will have on the reinsertion of a port. I guess we will find out on Friday.

what else can go wrong

Ethan's last round of chemo was straight forward. Despite a bit of nausea and anorexia there were no major complications. The naso feeds were continuing so the feeding issues were under control. He was discharged on Sunday with the plan to be admitted Tuesday for day chemo. In the short time we were home he managed to vomit the tube out a couple of times. The main issue being weight loss.

He was admitted for day chemo as planned. He was given the thorough once over. He had lost a fair bit of weight so the nausea medication was increased.

The plan from here was to be home for a couple of weeks before the next round of chemo. Both girls had fevers and we knew Ethan would be next. On Wednesday he was still vomiting and was starting to look unwell. His bags were packed in case we had to do the midnight run but this didn't happen. He manage to have low grade temperatures at home until Friday before it was decided by the oncology team to take him back for a review. He was admitted with an upper respiratory infection and febrile neutropenia. His port was accessed and antibiotics commenced. His oxygen levels were 70% and oxygen was also started. On Saturday he started having diarrhea, the temperatures were getting worse, and his counts had dropped. A platelet and blood transfusion were given and his naso feeds changed to gastrolyte. His oxygen requirements were also getting higher. The nurses and doctors were keeping a close eye on him.

On Sunday morning his port site was looking a little redder. Nothing bad but enough to keep an eye on and add in another antibiotic. More blood tests were orderd. His platelets were even lower. By Sunday arvo he was looking pretty pale and lethargic. He was pretty uncomfortable when weeing and it was found he had a fair bit of blood in his wee. Another two units of platelets were ordered to try and stop the bleeding. He was pretty flat and had a fair bit going on; gastro, chest infection and he was weeing blood. What else could happen? Sunday night his port was very red and swollen. The port was disconnected and an IV was inserted (after several attempts an anaesthetist was called!). He was ordered more bloods and it was confirmed the whole port line was infected. They quickly arranged for a cardiac review to eliminate heart involvement. Luckily the heart and conduit show no signs of infection. The plan is to try and save the line rather than surgically remove it. If this can't be done they will need to replace it (two more anaesthetics). Even though they are trying to save it, they will a low threshold because of the risks of more cardiac surgery.

chemo part 4

Ethan was admitted on tuesday for his next round of chemo. After a good week at home he weighed in at an almighty 11.1Kg. He has remained happy during treatment this week and has even learnt some more signing, we just wish he could say it. His weight is still an issue because it went down to 10.6Kg. Nothing much else to report.

going good

The last few days have been wonderful. We have all enjoyed the taste of normality. (If you can call this normal!)

Ethan is still having naso gastric feeds. He is tolerating these better than before, so I have been able to bolus a few feeds and run it at higher rate overnight. This allows him to have a rest from pushing around the pump during the day. I'm not sure whether he forgets or is just protesting about the pump being in a bright pink dolls pram but sometimes he walks off with out it!! He managed this yesterday and the tube came out. This usually would require a trip to hospital to have it reinserted. It felt like we had just been discharged and we weren't going back!! So I crossed the line once again and became nurse mum! It is good to know that he tolerates this.

He still has a snotty nose and is quite mucusy. This has caused the odd little vomit but nothing major. Hopefully he can fight it off before chemo next week.

Home

On Monday the port needle was removed and oral antibiotics commenced. The consultant wanted the needle removed to limit the risk of further infection. The plan being that if he developed a temperature above 38 a peripheral line would need to be inserted and IV antibiotics commenced again, if he remained afebrile for 24 hours we could go home. The latter was achieved and we were discharged on oral antibiotics today. He had blood tests prior to discharge and his counts are coming up and all is looking well. The plan is to stay home for a week and go back next Tuesday for the 5 day cycle, fingers crossed!

I was able to speak with Ethan's consultant yesterday in depth about what happened on Friday. He agrees with the respiratory doctors, that it was all due to the RSV and asthma. He doesn't agree it was pulmonary edema or anything to do with his heart. This is a huge relief.

Jo

More infection

On Friday at Monash it was noticed that Ethan's port site was looking red. The port needle is meant to be changed weekly to help prevent infections. This was due last Tuesday! The port needle was changed and sent to pathology for testing.

Ethan wasn't as chirpy today. He had a 5 hour arvo sleep and still settled at normal time. He is still suffering with temperatures and his heart rate and respiratory rate are also up. This is a concern as the antibiotics should be working by now. He has also been commenced on a daily hormone injection to help boost his counts.

The doctors believe his port site is redder and is another cause of infection. The pathology report from Monash was followed up. The needle grew a skin bug, so they broadened his antibiotic cover. Hopefully this works and the port site heals. His port is vital for treatment. If the infection becomes worse, it may need to be taken out which would involve a general anaesthetic and delay treatment or even worse the infection could travel the same path thru his vein into his heart, leading to endocartitis and more heart surgery. A concern that most likely wouldn't be an issue if the needle was changed on time..

He is already struggling with the treatment and the thought of more surgery is heart breaking.

pulmonary edema

The temperatures appeared to be getting worse. The respiratory doctors reviewed Ethan and decided a bronchoscopy was needed. An hour later I was told it wasn't needed. I didn't like the thought of a general anaesthetic with him so unwell so this was a huge relief. They had reviewed the tests once more and confirmed RSV, pneumonia and asthma. They changed his antibiotics and started hourly ventolin nebulisers. A side effect of ventolin is hyperactivity. The high heart rate and respiratory rate were here to stay for a while!

I decided to give him a shower and freshen him up. In the shower I notice he was bluer than normal. (The oxygen was already running at 2l/min via the prongs). He then developed goose bumps and looked as if he was going to have rigor. I quickly got him out of the shower to notice the bluer tinge he had was now a grey/purple all over. The buzzer was rang, the monitors put on and oxygen at 10l/min via a mask was commenced. His sats were in the 50's. His heart rate was powering along at 175bpm and respiratory rate and effort were extreme. The respiratory team came back. He was very wheezy and they ordered continuous ventolin for an hour. They also said he was too sick for the ward and an ICU review was needed. The ventolin was commenced and by the time the ICU doctors came, he was as high as a kite. The hyperactivity was now being seen in his behavior. He was still working extremely hard with every breath but he was oblivious. He was wiggling on the bed and playing kicking games with the ICU consultant.

The ICU consultant believed he had pulmonary edema (fluid in the lungs). He ordered some lasix to help him wee any excess fluid. He believed his oxygen levels were low due to shunting of blood through his VSD, which limits the blood flow to the lungs. He was too interactive and happy for ICU at Monash but they needed him were they could monitor him more closely. We were transferred, code 2 to the kids.

We went via the emergency department and were then admitted to the 5th floor. I decided not to stay overnight but told them to call if needed. I got home late and didn't sleep much before getting up at dawns crack to get back there. (It would have been better to stay). I didn't know what to expect when I got there. I prepared myself and went in. There was a nurse in the room (not a good sign) , she was trying to put his oxygen back on (a good sign!) He was sating at 88 without any oxygen! I don't know what happened in the few hours I wasn't there but a huge weight lifted of my shoulders. He even decided to try some food.

Not sure of the plan from here. He needs to continue with the antibiotics and they have slowly started his naso feeds. Hopefully we get transferred back or even better discharged early next week.

Mon, It must be hard watching the Olympics knowing you and Luke would have been there. We are extremely grateful for the decision not to go and we are even more appreciative of your support and care for us over the last few months. We are lucky to have you. Thank you.

Jo

deterioration

Over the week, Ethan has progressively worsened. The RSV was still causing coughing, followed by vomiting. His weight issue also became a bigger problem with him now at 9.7Kg. On tuesday afternoons, the oncology doctors, social workers, pharmacy, dietician, physio, nurses and day chemo staff all meet and discuss the plan. They decided to start a top up feed plan that goes straight into his veins (TPN). This has to be metabolised by the liver which creates more side effects issues, but he needs to be beefed up so there isn't much choice.

He had been dehydrated, so fluids were commenced, and his next weigh in was 10.4Kg. Unfortunately this was all retained fluid. He was starting to look flat again, so antibiotics were commenced. They were hoping to stop any bugs brewing, but the next day the fevers began. This made him even more flat and miserable as he had increased heart rate and respiration and low sats. The oncologist got the respiratory doctors to look at him to see if it was still just RSV. They believe it is RSV, right lower lobe pneumonia and asthma. They started an asthma plan and are going to review him today. If he is still getting temps they are considering a bronchoscopy to test for a rare bug that chemo kids are more likely to get.

rsv

Chemo finished last thursday as planned. Ethan picked up the RSV virus during the week, the coughing is causing vomiting so he hasn't been able to come home yet. He did have some short stints out on the weekend but was back on the ward by dinner. He has lost some more weight, hence his resemblance to Gollum.