Wednesday 1 October 2008

Blog: October 2008


31st October 2008



Rafael is home :-)))


Stem Cell harvest went as planned on Wednesday. It was an interesting experience. Aphaeresis is the medical term for the procedure. When we arrived, the machine had already been primed with donor blood and all was set for Rafael to be connected. It was painless for Rafael – just VERY boring. He kept asking to go back upstairs. 2 male nurses were working with Rafael and he had a great time, playing and joking with them. It took about 3 ½ hours. Quite amazing technology to see. A bag of stem cells were collected, and sent to a lab for a count to see if they had enough.

Once back upstairs, Dr John Heath came to talk to me and dropped a bombshell – he is taking a sabbatical the next 4 ½ months :-(( He said he thought he had already told us that – NO, we would remember a conversation like that!

He is the only Doctor there that we have any real faith in :-( He will hand over to another consultant and we will still use the plans for Rafael he has instigated and now changed as well.

Due to Rafael’s GFR (kidney function), he cannot go straight into the next round of chemo as it will be way too toxic for him. Therefore, he will be given a dose of Carboplatin this week, then in a few weeks have a CT scan again, meet with the surgeon and have his surgery before the next round. Depending on what the surgeon can and can’t do will decide if Rafael needs radiation.

In the afternoon the nurse told me they did not get enough stem cells and the procedure would be repeated on Thursday L We had hoped to be able to get Rafael out of hospital for a few hours as ASIC (Dom’s work) had organised a luncheon. I really wanted to make it and thankfully, our darling friend Deize was free to sit with Rafael for a few hours.

By the time I got back, they were back in his room and having fun, stem cells all harvested. She did say that he threw one of his famous tantrums earlier :-)

The nurse came and asked that we fast Rafael for 2 hours as she was going to give him some Medazalon. Yeah!! That meant they were going to take the vas catheter out! They have enough stem cells :-))) Also, while he was waiting, the Dr’s had ordered his interim round of chemo, the Carboplatin. We were expecting it on Friday. It only ran for ½ hour with a flush afterwards. So much quicker than any of the other ones he’s had.

At this stage they told us and Rafael that he could go home at 9 pm :-) Rafael was SO excited, he kept telling every nurse that cam in that he was “going home” However, he was also impatient and kept asking and asking “when”, “how much longer”

The Medazalon kicked in nicely and Domingos arrived just in time to see a very happy, giggly, slightly “drunk” Rafinha :-))

With a lot of effort, screaming and holding down, the vas cath was removed. Pressure needed to be applied for 4 hours to make sure there was no bleeding and then we left :-))

Today was Halloween. It is not typically celebrated in Australia, but Rafael knew all about it and was very excited. He thought it would be the whole day and was too excited to go to bed last night. I had to explain to him that is would be at night time only :-))

Our friend Patrice organised a small event in her street, but once we arrived, Rafael could not get past her son’s Thomas train set! He didn’t want to collect lollies at all :-) Gabriela was dressed as a black cat and she had a really fun time :-)

It is a long weekend here due to Tuesday being the Melbourne Cup. Gabriela has no school on Monday and Mingo has an annual leave day :-) Yeah, 4 days of sleeping in and not going to the hospital :-)))

xxx
 

28th October 2008

We all had a great weekend (except Saturday – Rafael had to spend 5 ½ hours at the hospital having a blood transfusion!) We caught up with a few friends and even managed to go out as a family to a friend’s house for dinner :-)

Challenge gave us a family ticket to the Melbourne Aquarium and it was for 3 children. We knew that Rafa would love Nicholas to go, so we teed it up with Xande and Gabriela and Rafael had no idea he was coming, or where we were going! They were both very excited to see Nick :-) We caught a train to the city and then a tram to the aquarium. As soon as we got in, all Rafa wanted to see were the sharks :-) They had a really good time, running around and looking at everything.



Had to be back at the hospital 8am Monday for the vas catheter insertion. It took longer than expected (1 ½ hours), the Dr said they had some trouble getting it into position. Rafael woke up very well from the anaesthetic and ate an icy pole.

Afterwards we were transferred to the ward where he has to stay in bed, lying down and pretty much move as least as possible L He is in a bit of pain, but mostly uncomfortable as the catheter is in his groin (femoral artery)

Another saga of miscommunication at the hospital – Rafael’s trephine is not clear :-(( But with Dr John Heath being away, no one re-checked the results before the vas Cath was inserted!!! Domingos is raging mad at the hospital and has written a huge complaint about some of the things they have done. Now that it has formally been received by the hospital, they have to follow up on the issues and advise us of the outcomes.

Therefore, he will still have the stem cell harvest on Wednesday. It takes about 4 -5 hours and they will know by the end of the afternoon if they have enough stem cells collected. If not, he will have more taken on Thursday. He does not have enough blood in his own body to prime the machine, so he will be having donor blood at the same time. If all goes well, then we should be home on Thursday.

However, Rafael is due to start his 5th round of chemo very soon. It needs to be amended due to his kidney function and hearing test. We are not sure what Dr John Heath is planning yet.

Rafael spent the day with Dom and when I talked to him on the phone, he was catty and funny and happy :-)) He wanted me to bring pizza from Auntie Lina’s café!! Thankfully Dom thought of a compromise and they ordered Dominoes pizza – and guess what? They deliver to the room :-))) Rafael ate 1 slice for lunch and 1 for dinner :-))

24th October 2008


Rafael had his kidney function test on Wednesday. It is a specialised test called GFR. It was not painful for Rafa, just took a few hours. They inject a radioactive dye into a vein and then do 2 blood tests at 90 minute intervals.

His Stem Cell harvest next week has been delayed 1 day and it will now occur on Wednesday. Due to him needing surgery on Monday morning to insert a vas catheter into his groin, he will unfortunately have to stay in hospital on Tuesday too :-((  May come home on Thursday or Friday. Depending on how many cells they are able to collect on Wednesday.

We saw another Dr today as our consultant is away. It seems that the GFR showed his kidneys are not functioning properly, but he did not explain to what extent. He did say that Rafael’s next round of chemo will need to be modified (which we expected)

His red blood count today was low and therefore he needs to go in to hospital first thing tomorrow to start a blood transfusion. Usually takes 4 hours L Fun way to spend a Saturday – not!

Yesterday we all had a great day as we did not have to go to the hospital :-)) Rafael has been really well and he even went with Dom to watch Gabriela play tennis :-)

Today he weighed 12.5 kilos and is 95.5 cm J The dietician is happy with his weight and he doesn’t need overnight feeds at the moment. We will keep the tube in though as he still needs lot’s of medicines. He is so amazing though, he has learnt to take a capsule that he needs daily! It is so cute to see him trying to wash it down with water, only to see it “pop” out of his cheek. He can manage to get it down in about 3 attempts :-)

Kept forgetting to write – on Wednesday night, Rafael’s last eyelash from his left eye fell out :-(( He just has 2 on his right eye left :-(
 
21st October 2008

Rafael had his 4th Bone Marrow Aspirate today, and finally, the anaesthetist found a good combination and he woke up VERY slowly (took more than 1 hour). He didn’t complain or cry and even ate a whole icy pole J He was more concerned as to why he had a cannula in his hand. (That is for the kidney function test tomorrow).

While he was under, they also changed his dressing and his nasogastric tube.

We had to get to the hospital by 9:00 am so that they could start a platelet transfusion before the aspirate. The traffic was a nightmare and it took us 1 hour to get there from Altona!! Just made it – whew!

Rafael slept all the way home in the car and for the rest of the afternoon on the sofa. He didn’t even flinch when the nurse came and changed his antibiotic :-)

When I arrived home with Gabriela at 4:30pm, he was awake and eating porridge – since he wasn’t allowed to eat in the morning, he still believed that he needed to eat his breakfast before any other type of food :-)))

His electrolytes are much better and a few medicines have been dropped. He is still on Gastrolyte overnight.
 
19th October 2008

Friday was our only real day at home! Gabriela had a cold, so she didn’t go to school.
We had a great day, not doing much, but just being together :-))

In the evening, a Dr called to say that Rafael’s Urea level had gone up considerably and it seems his kidneys are still leaking. In an attempt to avoid going back to hospital, she suggested we try to give Rafael Gastrolyte at 70ml per hour overnight, via his nasogastric tube and go back to the hospital in the morning for blood tests.

Dom and I had booked to go on the Colonial Tramcar restaurant months ago. Then Rafa got sick and we kept cancelling. Saturday was the last day that we could use the ticket. After much juggling and worrying about logistics, we decided to still go and asked a friend and my Mum to go to the hospital and sit with Rafael while we went out. In fact, we only just made the tram! The city traffic was crazy due to road works. The doors were already closed and Dom was running down the street! They let us on and it left about 30 seconds later – whew!!
So, for the first time in long time, Domingos and I sat for 2 hours, ate, talked and enjoyed the sunshine and sights outside :-))

When we arrived back at the hospital, Rafael was still having fun drawing and playing.
Sunday was the same, back to hospital early in the morning for more blood tests. Thankfully the levels are better. He now has 1 extra medicine to take :-(

He is still on Gastrolyte overnight, which means he was unable to have his feeds. However, by not being “filled up” overnight, he has been asking for and eating a bit throughout the day. His new “addiction” is scrambled eggs :-)
 
16th October 2008

Day 18 and we are HOME!!!! :-))

Once it was confirmed and Rafael realised it was “true”, he didn’t stop asking “when are we leaving”. He was so excited :-)

He had an audiology test first. The news was not unexpected, but it still upset us a lot L He already has moderate to severe hearing loss in the high frequency range and they want him fitted with hearing aids :-((

It’s so unfair. The drug – Cisplatin – that has caused this had better be doing its job of killing the neuroblastoma cells!! It’s so toxic, yet very important for his treatment.

We have come home with a pharmacy!! You should see all of the different medicines and electrolytes we have. It’s so confusing – Domingos even made up a spreadsheet so I can keep track of it all. As well, he has feeds again via the nasogastric tube overnight.

The biggest hurdle for getting home is that he still needs IV antibiotics for the next week. The hospital had an external pharmaceutical company make up bottles that last for 24 hours. We will have a nurse come everyday to change it. That said – the bottles are huge! The nurses wrapped it up in bandages and pinned the ends and then pinned that to Rafael’s clothes. Poor little guy, it is so heavy and awkward for him L But at least we are home J

Rafael was on TV tonight, when I saw the close up; I cried :-) He’s soooooo cute
 
15th October 2008

Day 17 and it looks like we are “homeward bound”!!!! At last :-)

All is set for Rafael to be released tomorrow, except if he gets a fever between now and then and/or his blood counts drop :-(

His creatinine is back to normal, but he still needs to be on antibiotics for the infection in his central line. Therefore, a nurse will come to our house every day and administer it via a special port they will place in his stomach tomorrow :-(

Although we will be home, we will be back at the hospital next Tuesday and Wednesday and Thursday :-( On Tuesday Rafael will have another Bone Marrow Aspirate. On Wednesday – a kidney function test and Thursday for an appointment with a Dr to find out some results!

All of these things are just day visits, but they can be long and drawn out :-(

Tonight, Domingos and I went “out” for a wonderful dinner with wonderful company!! It’s a very exclusive restaurant and only special people know about it and can be invited. They even threw in free baby sitting for Gabriela and Rafael :-))) Not sure who had more fun, us or them?  It was nice to relax a bit and talk to other parents going through similar things. Thanks Challenge xxx Thanks Micca xxx  (http://www.challenge.org.au/generic.asp?pageid=5&subpageid=49) read the last paragraph ;-) ;-)
 
13th October 2008

Sorry for not updating sooner, I know a lot of you get “worried” when you don’t hear from us!
Domingos and I are just sooooo tired :-(

Good news, Rafael seems to have “turned a corner” today :-)

We have had a rough week, but today he was drawing, playing with play dough and even walking to the toilet! He has been asking for and drinking a lot of water and milk.

He needed a blood transfusion today. His creatinine level is still 0.6, but that should come down some more, his neutrophils are still 0, but should pick up any day.

The problem now is that he has an infection inside his central line and he needs 7 – 10 days of antibiotics for that! The renal Dr’s started to decrease the fluids today :-) 20% each day.

More good news – he finally put on weight today – a whole 500 grams!!!! :-)) He is now 12.2

Thank you to all of our lovely visits over the weekend; it really helps relieve the “boredom” a lot. Sorry Rafael was so grumpy most of the time! Xxx

We have no idea (or expectation)  as to when we might be home, but probably the end of the week ???

Thanks to everyone for everything xxx
 
9th October 2008

Rafael’s creatinine level is slowly coming down, it’s finally back to single digits – 0.9

He will have to stay in hospital over the weekend :-(( He is so sad and unhappy there. Dom and I feel so bad and helpless.

He lost weight again, down to 11.6, but managed to go up to 11.8 today and that was after vomiting and diarrhoea!! Our poor darling, he has been so sick this week and we just feel for him so much.

At least he has found a new addiction – OJ :-) He has been drinking lots. He was desperate to get out of hospital to go to Lina’s café for some of her fresh oj, but I guess he has resigned himself to drinking the hospital stuff.

He is still not eating, but the feeds via his nasal tube are increasing.

Due to his neutrophils being 0, the hospital has a policy of not allowing the child to go home. Previously we have been at home when this happens and then we just had to wait and see if he developed a fever and had to go back. Whereas now, he just has to stay. It is better for him and his body – but SO hard for him and us. He doesn’t even talk about going home now :-(

Kari, the play therapist has been trying to spend some time with him, getting him to talk about his feelings etc. For the first 2 days he just told her to go away or pretended he was asleep. But today she managed to have a chat with him. We don’t know what they discussed, but he did tell her that he is “sad” L L Boo hoo – just breaks my heart. 2 weeks ago he was running around, happy, playing, just being a normal 4 year old.

Rafael’s great great Auntie will be in Melbourne from Adelaide this weekend with her daughters (Rafael’s cousins). It will be so lovely to see them again :-)

The nephrologists plan to start reducing the fluids slowly over the next few days and of course, careful monitoring.

Thank you for the offers of visits. We all would love to see people. It is so isolating and lonely there at times and I think Rafael is “bored” with Mummy and Daddy. New faces might cheer him up :-)
 
8th October 2008

We were finally able to speak to the Renal physician (a nephrologist – learn new things every day) this morning and he confirmed that Rafael is in Acute Renal failure. To what degree, they don’t know. They do believe that it is just temporary and will correct itself. So for now, it just means LOTS of IV fluids being flushed through.

Rafael is SLOWLY getting better.  His creatinine level is coming down each blood test and his electrolytes are stabilising. He has lost 1.9 kilos since last Monday :-(

He is very depressed, weak, sad, angry etc … he just lays in his bed and watches TV or sleeps :-(((

They took the catheter out yesterday due to the risk of infection and the fact that it was leaking all over the bed and not giving a correct reading anyway :-)))

He is finally receiving feeds through his nasal tube. Unfortunately, he is still vomiting when they give him medicine. This is partly psychological and partly due to nausea :-(

We had a 1 hour meeting with our consultant, Dr Heath this afternoon. We talked about too many things to write now. As for Rafael’s kidneys, it’s wait and see. He will have a kidney function test in a few weeks and that will determine how his next round of chemo pans out.

It will not affect his Bone Marrow aspirate and harvest as planned for the next few weeks.
 
6th October 2008

Day 8 and counting :(

Being a Monday and a "normal" day at the hospital, a whole team of Doctors arrived in Rafael's room at 9 am. One was a renal specialist.

During the night, his creatinine level slowly started to come down, 0.001 at a time. It was decided that he needed a catheter inserted to get an accurate measure of his urine output. Also, he needed to have a nasal tube put back in as he needs to take a few different oral medications.

He had a platelet transfusion in the afternoon, then they gave him a drug called Medazalon, which made him a little drowsy, but what it does is make the mind forget what has happened.

Poor little guy, can you imagine this? - Having a nurse insert a tube down your nose and the next minute having a Dr insert a tube in your pee pee ??? He handled it surprisingly well, got more upset by the nasal tube. Due to his low platelets. it seems that he burst some vessels in his eyes as they were very blood shot all night.

He complained that the catheter hurt and was quite happy to just lay there holding on to his pee pee all night :(

He is still not eating and has lost 1.5 kilos this week :( He did enjoy 2 whole icy poles today :)

5th October 2008

A quick update, it's late and I'm tired :(

Rafael is not well at all :( The creatinine level in his blood is going too high which means his kidneys are not functioning. The culprit drug for this is the cisplatin he had for 4 days this week. It's all a bit of a "wait and see" game at the moment. As you may remember - nothing happens at that hospital during weekends!! They are giving him high rates of IV fluids for now and doing blood tests every 8 hours (ish) as well as weighing him 3 times a day. he has not eaten since last Tuesday :(

Did you know that you can pee (xi xi) too much???

3 more days minimum in hospital, if all goes well.

3rd October 2008

Not a great couple of days L Rafael is still in hospital and he is very sad about that :-((
Chemo wise, he did pretty well. He hasn’t eaten anything since Tuesday and kept vomiting until today.

Something “weird” has gone on at the hospital this week. A “comedy” of errors? A lack of communication? Who knows??? Dr Heath cancelled Rafael’s stew cell harvest last Friday afternoon, but it did not filter down to the people involved. On Monday morning, day surgery called us at home (8 am) to find out where we were? Then when we got to day oncology for our admission, they didn’t know we were coming either! On Wednesday night, Rafael vomited and Domingos had to change him and all of the bed linen while 2 nurses stood there and watched!!!

Rafael had a nasal swab on Tuesday because he still has a clear, runny nose. The results didn’t come back until Thursday – Influenza B. The resident Dr came to see me all serious to say what they had found and how they would treat it. I said “oh, he STILL has it?” Matt (the Dr) was like “what do you mean?” I had to tell him that Rafael was admitted about 4 weeks ago with it. He didn’t even know, had not checked any history etc!! So there we are, on the Oncology floor, being in a twin share room all week with another boy and suddenly they treat us like “lepers”!! We had to make sure the door was shut at all times and Rafael could not go out of his room. It kind of was funny :-)

 Also, on Thursday, they should have done blood tests, but no one ordered them – therefore – not done! We spoke to Matt yesterday and told him that if Rafael needed a blood transfusion or magnesium today, then to please not “surprise” us at the last minute and to stay on top of things. He said “oh, I’m pretty sure he won’t need a transfusion, but I’ll order a full blood count for the morning”

Considering that Rafael had spent the day in bed, with the blinds closed, sleeping on and off, and that they hadn’t taken any blood that morning, I was a little surprised at his comment.

Later, one of the very experienced nurses was in the room talking about other stuff. She came back to our room with a blood slip Matt had just signed. She told Matt that Rafael looks very pale and probably needs a blood transfusion! They took the bloods late in the evening and yes; Rafael did need a transfusion, which he had during the night.

He was due to be discharged around 1pm today. Then Domingos called me this morning to say it would be 11:30 instead. I don’t know how 24 hours of fluid flush can shrink by 1 ½ hours?? Dom confirmed it with her and got everything ready to go.

Then Matt waltzes in (at 11:15 am) and says that the blood test from last night showed Rafael’s kidneys were not functioning properly. That result had “sat” on a computer ALL night and no one even looked!! If they had done bloods yesterday as they should have, they’d also have known. He said that they would need to do another blood test to confirm Rafael’s kidney function and he might have to stay over the weekend to have extra fluid flushed through his system!!

As you can imagine, Dom lost it. Those of you who know him personally know that it takes a LOT for him to get fired up. Thankfully he does not swear J In the end he had our consultant, Dr Heath paged and he came to talk to Dom and see Rafael. Dr Heath did say that this is a temporary condition and should not cause any permanent damage. He sent Rafael for an ultrasound this afternoon to check his kidneys as well. The result showed no problems :-)

Rafael has just had more blood taken and will do again in the morning.

He is such a brave and strong little boy. I don’t know how I would cope with half the things he has gone through??

I spoke to him tonight and he said “Mummy, I’m sorry I didn’t come home today” :-((( He sounded so sad. It’s just NOT fair!

xxx 

1st October 2008

Can you believe it's October already?? 

Rafael started his 4th round of chemotherapy on Monday. He did not get a room until 3pm, but was very happy playing in Day Oncology with all of the toys. He got upset when we got to the room; I think it was the realisation that he was back in hospital to stay. He cried, I cried :-(

He was sick a couple of times, but then the anti-nausea medication seemed to kick in and he hasn’t been sick again until today.

Yesterday Gabriela attended an Oncology Siblings day at the hospital which was run by the social work department. We are not sure how much she understood, but she did enjoy the tour of the hospital and said that having her blood pressure taken “hurt”

Afterwards, she came to play with Rafael. They were both in fine form, yelling and playing and having way too much fun. So much fun that they bumped a table and a glass of water spilt over my laptop!!! Now it doesn’t work  :-((

I didn’t go to the hospital today; instead I tried to just have “fun” with Gabriela. We even went to the pool this morning which we have not done since Rafael first got sick. She played for 1 hour and I sat in the spa the whole time, just relaxing. This afternoon we went to see a funny movie “Beverly Hills Chihuahua”. It made us laugh :-)

Mingo said that Rafael has gone downhill a bit today. He hasn’t eaten anything and didn’t even want to go to the playroom this morning. He had a nap in the afternoon. I am taking Gabriela in tomorrow, so hopefully she can cheer him up a bit.

This round is a very harsh one, the same as his first (when he was so sick and lost so much weight). At least this time his weight is ok to start with. He was 13.7 kilos on Monday :-)