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.
Wednesday, June 23, 2004
Sunday, June 20, 2004
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.
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.
Tuesday, June 15, 2004
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!
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!
Thursday, June 10, 2004
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!
Give blood for Ethy - especially you O positive people!
Wednesday, June 09, 2004
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.
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.
Tuesday, June 08, 2004
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
Friday, June 04, 2004
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.
Chemo continued as normal, and the flushing should finish by tomorrow morning.
Thursday, June 03, 2004
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.
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.
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.
Tuesday, June 01, 2004
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.
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.
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