Peritonitis (day 3)

Ethan had a long night. He didn't tolerate his feeds and was cramping a lot. This didn't effect radiotherapy and it continued as planned. After this we went to Monash for an abdo xray and bloods and to have more vincristine. He had the abdo xray straight away. He was then assessed by the oncologist who decided to admit him. (At this stage he had a temp of 38.7, respiratory rate of 60, heart rate of 170 and oxygen sats of 67%!) An abdo ultrasound, another xray, blood tests and a wee test were all ordered. The tests indicate that he has a lot of fluid around his abdomen, ascites. This fluid is most likely infected and caused by peritonitis (inflammation of the abdominal lining) therefore antibiotics have been commenced. If the fevers and abdo pain persist, they may need to drain it. The ileus is improving and his bowel is slowly starting to work. He is very constipated and they are hoping some laxatives can get things moving. The surgical team will review him again first thing tomorrow morning before we go to Peter Mac for more radiation. Hopefully we can avoid any operations.

paralytic ileus (day 2 radiotherapy)

Ethan's abdo pain is getting worse. Jo spoke to the doctors today- after tomorrow's radiotherapy, he will be admitted to MMC for blood tests and xrays. They are thinking that part of his colon may be paralysed due to the vincristine. He still isn't eating, drinking, standing or walking. Hopefully we get through the night OK.

day 1 radiotherapy

Ethan didn't have a good night last night. He had a small vomit early on, followed by episodes of abdo pain, and then he managed to get the nasogastric tube wrapped around his neck. He seemed to settle after this but Jo was worried about him strangling himself and didn't sleep that well.

Today radiotherapy commenced. The procedure takes about half an hour. Radiotherapy itself only takes a couple of minutes, but we have to add an anaesthetic. He has antinausea medication half an hour before to help prevent any vomiting post anaesthetic. Today he went to sleep in Jo's arms. He seems to know and understand this part of the procedure. Everything ran smoothly and he woke with no problem. (There were no concerns about his oxygen levels which is a nice feeling).

He still isn't eating or drinking and has started to look dehydrated. The abdo cramps are not getting any better but he is now tolerating the feeds at 60mls per hour. The abdo cramping is a side effect of the weekly chemo. Another side effect he has is numbness and tingling in his extremities. He refuses to stand and looks pretty crippled at times. Not an easy thing to deal with.

out again

Yesterday the doctors decided that Ethan could go home once he was tolerating food. The nurses started the paediasure feeds with the plan to increase them and then go home. At the end of the day he was only up to 20mls per hour (at home we were having 60mls). Things weren't looking too good for a discharge. This was annoying as the vomiting had settled. He hadn't vomitted for a couple of days, however he was getting alot of cramping and pain. He still wasn't eating or drinking either. The doctors decided that it was up to us. We could try going home with a back up plan of being readmitted or wait another night and review him in the morning. We opted on taking him home. A huge decision and I still haven't decided whether it was the right thing to do. He is still miserable and getting a lot of pain. Not too sure how this will impact on radiotherapy this week but I am not expecting a great week.

in again

The antinausea medication prescribed seemed to do little as the vomiting continued at home and during the wee hours of the morning he managed to vomit the naso gastric tube out...not pretty. After he showered and had more antinausea medication, he settled and slept until 8:30. At this stage he looked pretty pale and miserable, he had a low temp, and was still trying to spew. I called Monash and was told to give more zofran and to bring him in. (he had already had over the prescribed dosage) The trip seemed to take forever. I had time to organise the girls, (not that I was using the phone while driving), catch the next round of vomit and give a little road rage! We were seen in emergency straight away. His port was accessed and some fluid given. We then had to sit and wait for a bed upstairs. 6 1/2 hours later we were admitted to 41north. His fluid was increased to 150% maintenance. This picked him up a lot and he managed to scoff down a banana which looked better the first time than the second! He will continue on the antinausea medication and fluid for the next couple of days. Hopefully we get home before the start of the next cycle.

Jo

radiotherapy

Radiotherapy is evil stuff. The consultant told us today they do not like giving it to children. But due to the aggressive nature of Ethan's cancer, it is necessary. They need to radiate the kidney bed to decrease the chance of local relapse. The radiation can scatter to surrounding tissue; including the heart, kidney, bladder and testes, it also decreases muscle and bone growth and development; ribs and vertebrae. Radiotherapy in itself can cause other sarcoma's.

Ethan will have 6 doses of radiation. This will cause nausea, lethargy and diarrhea, so he has been prescribed an anti nausea drug zofran.

Following the radiotherapy sizing/simulation/molding (which he had an anesthetic for) we went to MMC Clayton to have his naso tube put back in. Either Ethan or Adele pulled it out last night in a fight over the train set. While there, we met with the oncologist who said he wants to give the adriamycin chemo drug. He was trying to avoid using this as it can damage the heart, not something Ethan needs more of. "does this suit now" "I suppose so". Adriamycin and vincristine were given this afternoon. Adriamycin is red, so we need to look out for pink urine and tears. It causes nausea, which was confirmed with a vomit in the car park, plus more on the way home, with Jo trying to contain the cytotoxic spew in a shopping bag. Quote from Erin "I'm lucky that Ethan is sick, I get to sit in the front". Adele screamed the whole way home. Not a great finish to the day.

home for a bit

The cardiology team reviewed the echo's and decided it is not endocarditis. A huge relief, no open heart op. (yet!) It became apparent he was fighting one huge flu bug! A daily hormone injection which increases the amount of white cells at a rapid rate was commenced. His cardiologist spoke to us about having all treatment at the kids. This was so he can keep an eye on things. Sounds good for Ethan but for the rest of the family....not good. 7+ months of Ronald Mac house, isn't appealing. The oncology ward at the kids is also not the best place for Erin and Adele. On Friday Ethan was no longer neutropaenic, all IV antibiotics were ceased. All quacks were happy for us to go (infectious diseases, cardiology, and oncology). What do you mean he can go home, he still has oxygen and feeds going! At this stage he was on 2L of oxygen and desating at times. He was also on 3/4 maintenance with the naso feeds. He had commenced eating packets of chips and biscuits, not the best diet! Due to him being stable, a transfer back to Monash for the weaning of oxygen and feeds was arranged. The transfer took place Friday evening. He continued to improve over the weekend with his oxygen being removed Sunday morning. We were seen by his oncologist who decided we could go home, one problem the feeds! The feed situation hadn't improved at all. The oncologist decided he could go home with the naso pump. The dietitian was called and an education session arranged on how to manage this at home. Maybe now is a good time to tell them....no worries Jo's a nurse! We were discharged.

Home at last. We have an appointment on Tuesday in the day chemo centre and then off to Peter Mac for radiotherapy simulation on Wednesday. Not sure of the plan after this but we are due for a weeks chemo and a week of radiotherapy. So only a short stay.

long weekend....

Five day summary

On Friday Ethan's fever became worse. He was constantly hot and lethargic and medication was doing little to bring the temperatures down. So on Saturday another echo (heart ultrasound) was performed and endocarditis in the conduit was the likely cause. We were told that as the conduit is made of gortex it would need to be replaced (the same operation he had last October). A transfer to RCH, cardiac ward was arranged. The ambulance arrived and then left with out us. Ethan needed to be in an isolation room due to being diagnosed with paraflu 1, there were none available. They tested again for the flu bug hoping it had gone so he could go on the ward..it had gone but paraflu 3 was grown! Saturday night he became very hot, he started vomiting, his respiratory rate and heart rate went through the roof and his oxygen levels dropped. His oxygen took longer than usual to come back up. He also had low blood pressure and weak pulses. He was reviewed by the ICU registrar and an ICU bed was needed. Ethan didn't like the sound of this and while they were getting things ready he decided to slow down his breathing (down to 55!) and pick up his BP. Later that night Ethan had had enough of being hot and dropped his temperature to 34. It took 3 hours to pick up. This was followed straight away with a fever of 39. We managed to avoid ICU but were quickly transferred to 7west at RCH Sunday morning.

On Sunday at RCH he was fully cardiac monitored and more tests were carried out. Ethan at this stage remained pretty lethargic and hot. From Sunday until now he has improved slowly. His temperatures are not lasting as long and he has started to eat. The cardiology team have reviewed his past echos and have compared them to the recent ones, and at this stage feel he may not have endocarditis and thus the conduit may not need to be changed. They are still in the process of reviewing today's echo so this may change.

Over the weekend Ethan started losing his hair in clumps so a haircut was also ordered!

more fever

Summary for the day- Miserable in the morning due to fevers, so blood tests and an xray were ordered. The haemoglobin was low so a blood transfusion was given. The fever seemed to stop by the evening and he did some walking. He has put on weight now and is over 10Kg again, thanks to the naso-gastric tube (he's still not eating much on his own). He still has 3 antibiotics going.

Give blood for Ethy - especially you O positive people!

endocarditis?

Radiotherapy was postponed again. Ethan is still up and down with temperatures. When he is feeling OK we get him up for walks around the ward, although this is not easy lugging an oxygen tank and pushing an IV pole with him. Otherwise, he is in bed sleeping or watching videos. Sometimes a music therapy person will visit and play tunes. By the time they are finished, Ethan has realized they are not going to cause him pain. Ethan has been very pleased with a couple of Thomas the Tank Engines and a Henry the Octopus toy received as gifts.

His weight loss is becoming an issue so a naso-gastric tube was put in and now he receives a constant supply of nutrient rich milk straight to his stomach. This certainly had Ethan dark with everyone after the tube went in.

Today, more temperatures and a question over the last chest xray, led to the doctors ordering an echocardiogram (heart ultrasound). They wanted to see if the portacath tube had been inserted too far and was in the heart rather than sitting just before. A foreign object in the heart can cause endocarditis. The echo was inconclusive and the cardiologist will be checking previous echo's to see if there has been any changes.

The doctors have prescribed another antibiotic as cover, in case it is endocarditis. Nothing is straight forward for Ethan.

flu

Ethan is still in hospital. The pattern for the weekend and monday was much the same...high temperatures, high respiration and low oxygen saturation periods, then good for a while, all the result of an unknown virus. Yesterday they found it was a type of flu virus. He had his chemo yesterday. One of his white blood cell markers is too low now, so they have started him on antibiotics as a precaution. I doubt they will be able to have him sent to Peter Mac for his radiotherapy sizing tomorrow

sleepy friday

Ethan slept most of the morning. His temperature, heart rate and respiration had come down from last night, although he was still having some trouble without oxygen, so they left it on. He is still pretty snotty. He played with his Thomas train for a while before flaking it again. Pretty lethargic day for the little boy. The music therapist and dietician payed a visit also.

Chemo continued as normal, and the flushing should finish by tomorrow morning.

what is chemo?

Jo's summary of the day- 'High temperatures, high heart rate, high breathing rate, low oxygen saturation, miserable, slept most of the day, didn't want anyone near him'. He has some sort of infection happening but lab tests have come up negative so far.

Chemo was started a bit earlier today so that tomorrow's can start earlier so that hopefully he can come out for the weekend. Although his current infection might stuff that plan.

Someone asked me today, what is chemotherapy? From my non medical background, here is my interpretation. There are about 50 or so chemotherapy drugs. They are used in various combinations to treat different types of cancer. Cancer cells divide faster than most other cells in the body. The drugs are designed to kill the fast dividing cells. This means other fast dividing cells in the body are also affected like hair and bone marrow and the gastrointestinal tract. Hence hair can fall out and the red and white blood cells and platelets are depleted. This means a greater chance of picking up infection. And for Ethan, this will mean extra time in hospital with antibiotics, as he doesn't have the greatest ability to fight infection at the best of times. There are other side effects of chemotherapy (ethan receives an anti-nausea drug prior to treatment) which we hopefully won't find out about.

no peter mac

Ethan didn't like the sound of going to Peter Mac, so when the doctors found he had a temperature in the morning, it was postponed until next wednesday. A chest xray and blood tests were ordered. The results of these couldn't have been too bad as chemo started again after lunch.

He had quite a few visitors during the day. His heart condition seems to be well known at the hospital as quite a few student doctors seem to want to listen to his heart. We allow this as he is quite comfortable with a stethoscope. The dietician came to check his eating. We normally add polyjoule to his food at home, but since his time in hospital he hasn't had any supplements and has lost about a kilo in weight. We were provided with an additional menu, polyjoule and a toddler version of S26 formula which can be used to make milk drinks.

The rest of the week will be chemo treatment and hopefully he can come home at some stage on saturday.

sibling reunion

The IV fluid was continued until 12:30 to keep flushing his kidney and bladder. After this the IV line was disconnected from the port and he was free to roam the ward. Erin and Adele joined him today.





Tomorrow (wed) Ethan will be transferred to Peter Mac where he will be sized up for radiotherapy. Yet another General Anesthetic has to be given so a mould can be created for accurate treatment. He will start a 6 dose radiotherapy course the week after next, when he will be on the upswing from the effects of this weeks chemotherapy. After sizing, Ethan will be transferred back to MMC to continue chemo.