We had to be at day surgery by 8am. Rafael was fasting, so we just got him out of bed and left. Made it just in time, traffic out our way is beyond a joke these days :-(((
We didn't tell Rafa much about the procedure, just that he'd have a needle and go to sleep xxx
It's been a year since Rafa had his last general anaesthetic so he can't really remember much about it. I can't remember the last bone marrow aspirates he had???
I was the lucky one chosen today to go into the surgery with Rafa while he was put to sleep using the gas mask - bubble gum flavour ;-)
The haematologist was Dr Catherine and she is really nice, she's done a few of Rafael's B.A.'s before. We were very happy to see her there. She was shocked when we told her it's been nearly 5 years since dx ;-)
The anaesthetist read Rafael's medical plan and followed it's advice, waking Rafael up very slowly.
When the nurse called us in to see Rafael, he was already awake, a bit groggy, but there was screaming or yelling ;-))))
We stayed there for a bit longer, Rafael ate some ice cream and was happy.
Dr Peter wrote on the form that if they find active NB cells, to freeze them so we can send them off for some genetic tests.
We see Peter again on the 8th May xxx
I have already been in touch with a doctor in Los Angeles who has just opened a new antibodies trial. It's early days yet, we have to get all of Rafael's medical history and send it to her for an opinion, then the hospital will give us a ball park costing :-((
We also contacted a doctor in Brasil, to find out if they have antibodies available there for relapse. Although Rafael wouldn't have health insurance there, at least we could stay with family. I should have gotten Dom to write to him in Portuguese as something must have gotten lost in translation!! He didn't even answer my ? about antibodies!!!
Read his reply below at your own risk!!! Please feel free to have a little giggle ;-) xxx
"Beforehand it should be stated that neuroblastoma is a very hard to manage neoplasm when at presentation the disease is already disseminated. Progression in spite of agressive therapy makes things even worse.
Monoclonal antibodies have been assayed in experimental trials and results warranting its role as therapeutic agents have been far from conclusion as yet.
If coming to Sao Paulo has been foreseen, I´d have no problems admiting your son and, after his reevaluation, discussing with you the best feasible trend to be taken on. If either you or your husband have a valid health insurance policy, its acceptance in our service could be attainable.
Unfortunatly, expectations concerning your boy´s refractory malignancy are meager, but in case you make up your mind bringing him to stay under our care the best will be chosen to mitigate his misery.
Do not hesitate to keep in touch"
25th April 2013
A perfect ANZAC Day spent at home, Dom and Rafael slept in the t.v. room on the floor so that they could wake up at 4:30 am to watch Real Madrid play - they lost :-(
At 10:30am they sat down together and watched Brasil V Chile via Rafael's laptop - priceless :-))
Gabriela and I happily made ANZAC cookies :-) xxx
24th April 2013
Finally we got in to see Peter, about 1 hour late ;-)
Poor Peter, he really looked unwell and in pain. He said he'd had some abdominal surgery and was probably back at work too soon. At least we were his last patient ;-)
Peter was, of course, very shocked by the last scan and how quickly Rafael's disease had spread :-(
He said " You know, I really thought we were in the clear, I was even going to move Rafael to 6 monthly visits" :-(((
We discussed various treatment options and Peter is going to call Rod to discuss doing another dose of Lutetium/Yttrium once Rafael's counts have recovered.
He suggested we start doing chemo again, using Topotecan. I showed him a study report I have about using Topo with MIBG 131 and he was very interested in that path. Rod had already mentioned it to us as an option.
Rafael's counts were up a bit today :-)
Peter asked for another urine catecholamine test and we were able to do that before we left today. Rafael is also booked in next week for bone marrow aspirates.
Peter told us what we already knew - there aren't any treatment options for Rafael in Australia and we need to start looking at overseas trials :-(
Our head is spinning, we knew this might happen one day, but raising that kind of money is so daunting :-(((
23rd April 2013
I arrived home this morning from LA. Dom had an uneventful 4 days ;-)
The hospital called to say that Dr Peter wouldn't be consulting tomorrow and asked if we wanted to see another doctor or wait another week??? I got so stressed and upset! That was the appointment that had already been changed and we really need to meet with Peter to discuss Rafael's relapse and treatment options!!
Dr Peter hasn't replied to our emails and we have no idea what he's thinking :-(((((
I couldn't get much sleep that day as my mind was too worried :-(
When I got home from school pick up, Dr Peter had sent an email, it explains a lot ;-)
"Dear Dom and Tash,
As you may (or may not) have heard, I've been in hospital and it's my first day back today. We have an appointment tomorrow - I'll be in at RCH so will see you I think around 12.00 noon.
Regards,
Peter"
"Hi Peter
I didn't know you'd been in hospital :-( Hope you are feeling better?
Jenny Moody called me today to cancel our appt tomorrow.
We don't know what's going on??
Kind regards
Tash"
I didn't know you'd been in hospital :-( Hope you are feeling better?
Jenny Moody called me today to cancel our appt tomorrow.
We don't know what's going on??
Kind regards
Tash"
"Yes, because I'm still recovering my clinics have been cancelled - however, I'm going to come in and see you with Rafael so keep the appointment for midday as planned.
Peter"
19th April 2013
Rafael's school principal left Camp after lunch with Rafael and drove him up to Melbourne so that he could have another blood test to check platelets. We met at Werribee Hospital as it's closer to home. I thought Rafa would be angry that he didn't get to go on the bus with his friend's, but he was just tired. It seems they didn't get much sleep - surprise!!!
Jayne checked the results later in the day, and Rafael is safe for now ;-) Hb 90, WCC 2.8, Neuts 1.5 and Plts 38.
17th April 2013
Rafael made it to Camp!!!!!!!! :-)) He had to be at school before 8am and when I went to wake him up, he jumped straight out of bed :-)))
16th April 2013
Long day at RCH at RCH today :-( Hb was down to 76, so a transfusion was needed. By the time they did the cross match and started, it was after 1pm :-(
Platelets were down again, 43, but still above transfusion level.
Neutrophils were way down, 0.90 :-((
I spoke to Jayne and she said it probably wouldn't be a good idea for Rafael to go to Camp with his risk of infection :-(
Later in the day, Prof Hicks called me and we had a really good chat about options for Rafael. Of course, nothing is decided, but it was great to hear all of his opinions. When I told him about Camp, he said "You know I'm all about quality of life, and Camp is special for Raf so he must go"!!! So, decision was made for us ;-)
Rafael was full of energy when we got home, his top up of "red cordial" had kicked in ;-)
His school principal and teacher have been amazing. They really wanted Rafael to go to Camp if possible and they've been in constant contact to try to find out everything that Rafael might need. They even said that Dom or I could go along too. They also contacted the local ambulance an put Rafael's name on a special emergency list!!! How thorough :-)))
Of course, I had to run around and try to get everything ready for Camp !!!!
12th April 2013
Rafael's counts have all dropped, but he didn't have any transfusions :-) Have to go back on Tuesday to check again. Rafael might still make it to camp!
Hb = 84, Platelets = 56, Neut = 1.67
5th April 2013
More bad news today - Dr Peter finally replied to my email about Rafael's blood counts.
A few weeks ago when we went to RCH, we got Rafael to do a urine catecholamine test. This is a very simple test that detects NB. If you don't have NB, it will always be at a normal level.
Well, Rafael's level is raised for the first time since he was diagnosed :-( We have been doing these tests twice a year since dx and they have always come back in the normal range. I don't know what the level is, Peter didn't say.
He wants to repeat it in a few weeks to compare, since Rafael has had the treatment in between.
We have an appointment to see him on 24th April, which is too far away for me!!
Anyway, we will repeat Rafael's blood test on the 12th. We are going to do it at RCH because they can get the results in 1 hour. Through the GP, it took over 24 hours!
I've spoken to Jayne, our nurse coordinator and she has booked Rafael in for transfusions on Saturday if needed.
Rafael is meant to go to Grade 3 Camp next week, Wednesday - Friday. If his WCC stays low, I don't know that he can go :-( I'm keeping very quiet about it, just in case he's too sick ;-(((
Gabriela & Rafael both had their friends over for a play today. Dom has had the last week off and we've been "spring cleaning" Our garage is SO tidy!!! Today was the pantry day - urgh!! So worth it afterwards though ;-)
We headed into the city about 5 pm so that we could get a car park and eat dinner before the M.V. game. We found a nice cheap eat - Subway ;-) However, blew our budget next door at a Spanish chocolateria !! We drank pure hot chocolates and shared a plate of churros - yummmm!!!
Our seats at Etihad Stadium were awesome!! Gold A reserve - front row on the second level, in the middle of the field :-)
By the time the game started at 7:30pm, Rafael was already feeling tired. At half time the score was 0 - 1 :-((( I thought Rafa might cry if MV didn't score ;-) At 90 minutes MV scored and we all jumped out of our seats!!!
Rafael was then complaining that he had to stay longer to watch extra time ;-) Glad we convinced him as MV won 2 - 1 :-)))) We even saw Perry there and thanked her again for the great seats xxx
3rd April 2013
I called the GP today to see if the results were back. They checked and it wouldn't be until after 4pm. I went alone as Rafael didn't need to be there.
As expected, all counts have dropped. HB is 91, platelets at 72 and white cell count down to 1.4!! That really surprised me!! His neutrophils are way down at 0.7 which means he is neutropenic and is at risk of getting an infection :-(
I called Dr Tim and he was happy with the HB and Pl counts, although he expects them to drop even more :-(
Rafael was invited to a tour of AAMI Park this morning and then watch Melbourne Victory train :-) He complained a lot about having to go out!! When we arrived we met Perry from corporate and she gave Lela and Rafa a M.V. goodie bag - t-shirts, signed ball, wrist bands, drink bottle and stickers!!! It was SO kind of them :-)))
We then went on a tour of AAMI, got to go up to the field, check out the gym and even the locker room ;-)
We walked across to where the boys train. We didn't get to meet the Brasilian player, he was training on a different field, recovering from injury.
After training, we managed to get a lot of the team to sign the t-shirts they were given earlier :-) We missed out on getting Archie's :-((
Before we left, Perry met us again and gave us her own 4 tickets to Friday nights final!! She said she wouldn't be using them anyway as she'd be working - how sweet!!!!
2nd April 2013
I took Rafa to his GP today to get his 2 week blood test done. Unfortunately, the 1st nurse couldn't get any blood out, so she called another nurse to come in and try :-(( Poor Rafa!!!
To cheer him up we all went to the movies to watch The Croods. We took along 2 of their friends who live near the theatre. Christopher towers over Rafael, it's hard to believe they are only a few weeks apart in age ;-)
Peter"
19th April 2013
Rafael's school principal left Camp after lunch with Rafael and drove him up to Melbourne so that he could have another blood test to check platelets. We met at Werribee Hospital as it's closer to home. I thought Rafa would be angry that he didn't get to go on the bus with his friend's, but he was just tired. It seems they didn't get much sleep - surprise!!!
Jayne checked the results later in the day, and Rafael is safe for now ;-) Hb 90, WCC 2.8, Neuts 1.5 and Plts 38.
17th April 2013
Rafael made it to Camp!!!!!!!! :-)) He had to be at school before 8am and when I went to wake him up, he jumped straight out of bed :-)))
16th April 2013
Long day at RCH at RCH today :-( Hb was down to 76, so a transfusion was needed. By the time they did the cross match and started, it was after 1pm :-(
Platelets were down again, 43, but still above transfusion level.
Neutrophils were way down, 0.90 :-((
I spoke to Jayne and she said it probably wouldn't be a good idea for Rafael to go to Camp with his risk of infection :-(
Later in the day, Prof Hicks called me and we had a really good chat about options for Rafael. Of course, nothing is decided, but it was great to hear all of his opinions. When I told him about Camp, he said "You know I'm all about quality of life, and Camp is special for Raf so he must go"!!! So, decision was made for us ;-)
Rafael was full of energy when we got home, his top up of "red cordial" had kicked in ;-)
His school principal and teacher have been amazing. They really wanted Rafael to go to Camp if possible and they've been in constant contact to try to find out everything that Rafael might need. They even said that Dom or I could go along too. They also contacted the local ambulance an put Rafael's name on a special emergency list!!! How thorough :-)))
Of course, I had to run around and try to get everything ready for Camp !!!!
12th April 2013
Rafael's counts have all dropped, but he didn't have any transfusions :-) Have to go back on Tuesday to check again. Rafael might still make it to camp!
Hb = 84, Platelets = 56, Neut = 1.67
5th April 2013
More bad news today - Dr Peter finally replied to my email about Rafael's blood counts.
A few weeks ago when we went to RCH, we got Rafael to do a urine catecholamine test. This is a very simple test that detects NB. If you don't have NB, it will always be at a normal level.
Well, Rafael's level is raised for the first time since he was diagnosed :-( We have been doing these tests twice a year since dx and they have always come back in the normal range. I don't know what the level is, Peter didn't say.
He wants to repeat it in a few weeks to compare, since Rafael has had the treatment in between.
We have an appointment to see him on 24th April, which is too far away for me!!
Anyway, we will repeat Rafael's blood test on the 12th. We are going to do it at RCH because they can get the results in 1 hour. Through the GP, it took over 24 hours!
I've spoken to Jayne, our nurse coordinator and she has booked Rafael in for transfusions on Saturday if needed.
Rafael is meant to go to Grade 3 Camp next week, Wednesday - Friday. If his WCC stays low, I don't know that he can go :-( I'm keeping very quiet about it, just in case he's too sick ;-(((
Gabriela & Rafael both had their friends over for a play today. Dom has had the last week off and we've been "spring cleaning" Our garage is SO tidy!!! Today was the pantry day - urgh!! So worth it afterwards though ;-)
We headed into the city about 5 pm so that we could get a car park and eat dinner before the M.V. game. We found a nice cheap eat - Subway ;-) However, blew our budget next door at a Spanish chocolateria !! We drank pure hot chocolates and shared a plate of churros - yummmm!!!
Our seats at Etihad Stadium were awesome!! Gold A reserve - front row on the second level, in the middle of the field :-)
By the time the game started at 7:30pm, Rafael was already feeling tired. At half time the score was 0 - 1 :-((( I thought Rafa might cry if MV didn't score ;-) At 90 minutes MV scored and we all jumped out of our seats!!!
Rafael was then complaining that he had to stay longer to watch extra time ;-) Glad we convinced him as MV won 2 - 1 :-)))) We even saw Perry there and thanked her again for the great seats xxx
3rd April 2013
I called the GP today to see if the results were back. They checked and it wouldn't be until after 4pm. I went alone as Rafael didn't need to be there.
As expected, all counts have dropped. HB is 91, platelets at 72 and white cell count down to 1.4!! That really surprised me!! His neutrophils are way down at 0.7 which means he is neutropenic and is at risk of getting an infection :-(
I called Dr Tim and he was happy with the HB and Pl counts, although he expects them to drop even more :-(
Rafael was invited to a tour of AAMI Park this morning and then watch Melbourne Victory train :-) He complained a lot about having to go out!! When we arrived we met Perry from corporate and she gave Lela and Rafa a M.V. goodie bag - t-shirts, signed ball, wrist bands, drink bottle and stickers!!! It was SO kind of them :-)))
We then went on a tour of AAMI, got to go up to the field, check out the gym and even the locker room ;-)
We walked across to where the boys train. We didn't get to meet the Brasilian player, he was training on a different field, recovering from injury.
After training, we managed to get a lot of the team to sign the t-shirts they were given earlier :-) We missed out on getting Archie's :-((
Before we left, Perry met us again and gave us her own 4 tickets to Friday nights final!! She said she wouldn't be using them anyway as she'd be working - how sweet!!!!
2nd April 2013
I took Rafa to his GP today to get his 2 week blood test done. Unfortunately, the 1st nurse couldn't get any blood out, so she called another nurse to come in and try :-(( Poor Rafa!!!
To cheer him up we all went to the movies to watch The Croods. We took along 2 of their friends who live near the theatre. Christopher towers over Rafael, it's hard to believe they are only a few weeks apart in age ;-)
