shit happens

It took about an hour or so to find a suitable position and then a lot of hard work, but eventually Ethan found the pain relief he was after!



Things looked up after this, four nappies later, the boy was quite happy. We walked another lap of the ward, then we were transferred to the medical paed ward. The knowledge that the chemo drugs were about to be given but the uncertainty of how the little fella would react was unnerving. The chemo nurse was pretty matter of fact about it all and then it started. The port site (Ethan's third nipple) was re-accessed, hydration was given then the anti nausea drug. The 3 chemo drugs were given over 3 hours. Following this, 13 hours of hydration, including mesna to protect the bladder has to be given. This will run overnight. There is a balancing act required to flush clean the kidney and bladder but not to give too much fluid, and overload his heart.

Ethan actually slept through the chemo treatment and woke up for tea. He seemed to have handled it all quite well. These photo's were at tea time and shortly afterwards when he had a walk.

friday and the weekend

Sorry about the delay, haven't had much time to type...

Friday

started pretty well, Ethan was settled in the morning, the catheter and epidural came out. As the day went on, Ethan's temperature went up, urine output increased and he was becoming restless. The effects of the epidural were wearing off. Pain was setting in, so morphine was prescribed. This helped the pain but by evening, Ethan's stomach was severely bloated, it appeared he had a bowel obstruction. An enema and oral laxatives did nothing. His breathing was irregular and the morphine was increased. An xray and blood tests were ordered. The xray was finally done at 6am saturday morning. (Long night for Jo - she missed Katie Mactier at the World Champs)

Saturday

The xray and blood tests were clear. At around 9am, grumpy Jo made Ethan get out of bed and into the bath. With morphine on board, Ethan walked back from the bathroom and his stomach started deflating! Normal breakfast (weetbix) was consumed. The rest of the day was spent trying to get Ethan active to help clear his chest and also manage his pain - not an easy thing.

Sunday

Further pain management today. Ethan had a full breakfast (weetbix and apple puree). We tried to get him to do as many laps of the ward as possible. (to help clear his chest and also to indicate to the staff that he was good enough for day leave) This worked, after a dose of morphine, we went down to Jo's uncle and aunties to celebrate Erin's 4th birthday. It was good to spend time with the girls and get out of the hospital for a while. We had about a 4 hour window till the morphine wore off, before we had to get Ethan back to MMC for his fix. He had a temperature tonight but was still eating, drinking and moving about.

Tomorrow is the start of chemo, he will be in for a week (5 days), then home for the weekend. He is sized up for radiotherapy on wednesday. The oncologist consultant will have spoken to other contacts worldwide about one of the chemo drugs. It can affect the developing heart, so probably won't be used.

The easiest way to comment is to do an 'anonymous' comment, you don't need to enter in any other details that way.
Cheers, Luke

mmmm jelly

Ethan was active before we arrived this morning, he pulled the portacath line out and also had a crack at his epidural. He probably had a go at his catheter too. He finally was allowed some food, half a jelly cup, he wanted more but we didn't want him to vomit. He had a good wake period in the morning, before having a big sleep in the afternoon. He woke up reasonably happy after that and had a whole cup of jelly, while watching the wiggles. He has definitely turned the corner today.







The epidural and catheter are coming out tomorrow. They are still hoping for a weekend discharge.

We had the meeting with the Oncologist Consultant this evening. He says there is no evidence of spread. Starting monday, Ethan will begin chemotherapy and radiotherapy. Chemo will be for about 7 months and radiotherapy about 2 weeks. We are still absorbing the treatment plan and will give more details later. Too tired to add more tonight,

cheers Luke and Jo

slow progress

Ethan had a good night, but in the morning he started getting fidgety and uncomfortable. The Pain Team reviewed him again and decided his abdominal pain was still being covered by the epidural but he most likely has constipation. A sup was ordered. Cardiology, Surgery and Physio all reviewed him again. They all seemed reasonably happy with his progress. The Oncologist Consultant called in to say the results from the lab won't be known until tomorrow now. We have a meeting with him tomorrow night. During the afternoon, Ethan's temp kept slowly increasing, and was reasonably high for about 5 hours. Blood and urine tests were done during this time to look for infection. Yet another chest xray was ordered, looking for lung infection. We have been trying to move him around to help with recuperation and to lessen the likelihood of a chest infection. He seems pretty miserable, but perked up today when Erin came to visit. Thomas the Tank Engine videos are going down OK also. It seems like little progress has been made today and the removal of the epidural tomorrow unlikely.

pain management

An epidural was used during surgery to numb sensation and to provide pain relief post op. Often, morphine drips are used to numb pain but the anaethetist decided an epidural would be better. This wouldn't cloud Ethan neurologically but would block pain from the wound site down. The epidural needs to be monitored so that the block level doesn't travel up the spine and effect the lungs and heart, not an easy thing to test for in a 2 year old who cannot talk! This is partly why the epidural was turned down after his bradycardia episode last night. This morning, the Pain Management Team reviewed this level and said he was doing OK. During the course of the day, he became very stiff and was in obvious pain. Reviews by the Kidney Team, Cardiology Team and the Physio confirmed our thoughts. Pain Management was subsequently called for another review. They decided he was uncomfortable due to another cause and the epidural was actually reduced. As the day went on, Ethan became even less active, couldn't clear his throat and started groaning. We pushed for another review, he was in obvious pain. The PMT (including operation day anaethetist) decided this time he was in pain. A bolus was given and the rate increased. This had an immediate effect, Ethan clapped the anaethetist on the way out of the room. He was a lot more comfortable when we left.

Other concerns during the day were about fluid balance. This is hard to achieve due to having one kidney and an underlying cardiac problem. Too much fluid can stress the heart, but is needed to flush the kidney. A chest xray was ordered to check for infection and some blood was taken to pathology also.

We haven't received the results from the lab yet regarding the exact nature of the tumor, should know tomorrow.

Nephrectomy

Well, today went as good as could be hoped for. The surgeon seemed quite pleased with himself when we first saw him post op, always a good sign. He said the kidney removal was pretty straight forward and there was no visible signs of spread. Some lymph samples were taken for testing. The portacath was inserted and bone marrow was also taken for testing. His recovery so far has consisted mainly of sleeping. His good kidney is passing urine fine although he has had a temperature this evening. At around 5pm his heart rate dropped to somewhere in the 70's a couple of times but spontaneously came up again. The medical Fellow said it could be due to the anesthetic, but they decided to turn down the epidural block a bit to make sure that wasn't the cause.

Not wanting to be left out of the action, Adele started coughing in a weird way today. A visit to the GP has diagnosed Croup! Hopefully the cortisone prescribed will fix it up and she doesn't have to join her brother at MMC.

the night before

It's 11pm sunday night, Ethan is munching on some crackers, his last snack before the big day. The little night owl doesn't want to go to sleep yet. He appears to be mostly over his viral bug so I can't see the anaethetists delaying surgery any more.

Tomorrow, Ethan will be having his kidney removed, he will have bone marrow taken and a portacath inserted.

dancing ethan

The boy had the last part of his bone scan this morning. He ate all his breakfast and was dancing to the wiggles and Hi5 afterwards. Enough to say he can go home, which he did at lunchtime. Jo spoke to the surgeon and oncologist about a possible link to the genetic problem Ethan has (22q11 deletion). They will be looking into this.

The bone and brain scans are to look for secondary tumors. We do not know the results yet but the surgeon said he would have heard something by now if there was a problem



During yesterdays bone scan Ethan was held still by a big velcro belt. Hi5 helped to distract him, although the TV was a bit hard to see from his position

Clear Cell Sarcoma

Another long day at the hospital, this time he is having an overnight stay. Surgery for tomorrow (thursday) has now been postponed. The running nose he has had for the last week has developed into some sort of viral infection. He didn't eat much today, temperature has been up and down, heart rate was also up, he had the runs and got a rash. The doctors therefore decided to put it off until monday.

During the day he still had a bone scan and CT brain scan, and they also threw in a chest xray for good measure (due to him being sick today). The last part of the bone scan will be completed tomorrow morning and I suppose someone will tell us the results when they get around to it.

The official name of the tumor is Clear Cell Sarcoma of Infancy. It would be better to have a Wilms Tumor but Ethan doesn't do things by halves. Best not to look it up on google. We will hear more about the treatment (chemo) after surgery.

final biopsy results

Jo called the surgeon today to get the last word on the biopsy. The biopsy had been sent to the Childrens hospital and Sydney for cross examination. We were told that the tumor is rarer than initially thought. 10 cases in the last 40 years. He will still need the kidney removed and would now also require chemotherapy. Further tests also need to be performed tomorrow, to rule out any involvement other than the kidney. (CT, bone scans and bone marrow testing).

last 3 weeks

Ethan has been going through a bit lately. Here's a summary...

Mon 3/5/04 - We visited Monash Medical Centre to have follow up scans on Ethan's kidneys. (He was diagnosed with kidney reflux at about 9 months of age while an inpatient at Royal Childrens Hospital). These scans (ultrasound, DTPA and DMSA) were to check to see if there was any scarring caused by the reflux. During the ultrasound a lump was found in the left kidney. Ethan's peadiatrician quickly organised further tests.

Wed 5/5/04 Ethan had a CT scan under General Anaesthetic. This was to determine the nature of the lump. That afternoon, post CT scan, the childrens oncologist told us that the lump was very likely a tumor (probably a wilms tumor) and would have to be removed (probably the whole kidney) and he would need 10 weeks of chemotherapy. Pretty bad news.

Fri 7/5/04 Admission at Monash today was to have pre operation blood and urine tests. Bloody long day in hospital waiting for a doctor to tell us more about what was going to happen. The surgical registrar (who had looked at the CT results) told us that he thought it was unlikely to be a tumor. He said it didn't appear to be vascular. Jo and I were feeling pretty good about things at this stage but pissed off we had been told he probably had a tumor.

Thu 13/5/04 We were asked to come in for admission again. On arrival no one knew why we were there. Ethan had been fasting in case a procedure was done. By lunch we were told Ethan can now eat and we were to have a meeting with the surgeon at 2pm. At the informal meeting on the ward, we met Ethan's surgeon who told us it was some type of vascular tumor! Talk about differing opinions, but we certainly believed what we were hearing. The surgeon then filled us in on a plan to do a biopsy on the lump so that they knew exactly what it was and how to treat it.

Fri 14/5/04 Today we came in for Ethan to have a CT guided biopsy. Ethan had another GA and with the help of the CT a needle was inserted through his lower back to take a sample of the lump. The biopsy was needed to confirm the exact nature of the tumor so the right decision regarding surgery and treatment could be made. We had to wait until monday to find out what the lump truly was.

Mon 17/5/04 After thinking during the day "hopefully they can just take the lump, not the kidney" we visited the surgeon's rooms in Malvern. There we were told the lump was not a wilms tumor, but a rarer type, seen in melbourne once every few years. A wilms tumor would be preferable to this one as the prognosis is better. The Surgeon also confirmed that he couldn't take just the lump, but had to remove the whole kidney. This is to reduce the chance of cancer cells being left behind. He mentioned that Ethan may not have to have chemo as taking the kidney in one go could avoid the need. The final results of the biopsy would be known the next day.

first thought

it starts here