31st March 2010
Catch up time!!!
Rafael wasn’t 100% sure if he wanted to go to the Grand Prix as it was his 1st casual clothes day at school and he really didn’t like the idea of missing out on that!!
His classmates sang Happy Birthday to him on Wednesday instead J
Domingos and Rafael dropped Gabriela off at school and then caught a train and tram to Albert Park. They met the ladies from the Koala Foundation who coordinate the day with Crown Casino J I’m not sure of all the details, but they went to look at the V8 supercars, met some drivers, went to look at other types of racing cars, watched the V8’s race and the formula 3 cars J J A great day was had by both of them!!!
When they arrived home, Rafael’s presents were still being wrapped by Gabriela & myself L Oh well, no need for wrapping when it just get’s ripped off in seconds ;-) Rafael received LOT’s of Transformers and was VERY happy about that J J
Last Tuesday night we stayed in the city and gave the children a surprise – we took them to see CATS the musical. They didn’t know where we were going and were a bit “mmm?” when we finally told them ;-) They enjoyed the hotel, the pool was too cold for Rafa, so he only stayed in a little while L We also got to go to Daddy’s office and visit him, look at the view (30th floor), and type lot’s on his computer.
We had fantastic seats for the show, 6 rows from the front and on an inside isle, so when the cats came out into the audience, they usually stopped and made Gabriela give them a scratch ;-) One even untied her shoes!!
The children LOVED the show!! They didn’t know what to expect and they were enthralled by the music and the action. Like me, their favourite cat is Rum Tum Tugger J J
Since we’ve been home, we’ve had to listen to the cd over & over & over ...... J
We had to be at RCH at 9:30am on Wednesday for attempt 2 at doing the GFR (kidney function) test. Duncan our friend in nuclear medicine thought he’d be able to get a canula in first, then use a butterfly needle to give the injection. No luck, again L Duncan blew the 1st vein he tried L L Rafael was very brave again!! Duncan was a bit perplexed as to what to do?? They decided that the best option was to give the injection and then page an anaesthetist to insert the canula, as they are the experts. They put more cream all over Rafael’s arms and hands so that all bases were covered. We went upstairs to day oncology and left it up to them to decide how to proceed.
They ended up getting Jayne, who used to be in charge of day onc, to come and have a look. She decided that instead of using a canula, they could use a butterfly needle but Rafael would have to have the needle in twice, once for each blood extraction. It all worked very well, Rafael even commented to her that “it didn’t really hurt, I just yelled because I wanted to” J J
30th March 2010
Time is getting away from me again!! So much to update and no time today :-(
Rafael had a great time at the Grand Prix, but wanted to leave at 3pm as he was tired :-)
He received lot's of Transformers for his birthday and was very happy about that!!
Gabriela & Rafael started their soccer training on Saturday. It was SO great to see Rafa out on the field, running and having so much fun!
Yesterday we went to his new friend Tyler's house for a play and 2 other boys from his class went too - they ALL had a blast!!
We are heading into the city now for our "holiday". We are staying at a hotel in the city that has a pool and then tonight we are surprising G & R and taking them to see CATS :-)))
We have to be at the hospital at 9:30am tomorrow, so we decided to just stay in the city :-)
Will update more about the GP etc soon xxx
25th March 2010
HAPPY 6TH BIRTHDAY RAFINHA
I can't believe that 6 years ago today, I was at Auntie Julia's, wishing her a happy birthday and commenting to her about these little niggly pains I was having in my side J You weren't due for another 5 weeks and they didn't feel like contractions!
After a dash to the hospital to get you checked out and Mummy still having those little niggles, they decided to send us home. Thankfully they decided to do 1 last check before we left and that's when everything turned to chaos!!! You were ready to come, right then and there, except you had turned breach - footling breach - and the cord was presenting first. They had to stop me from pushing, call the theatre team back to the hospital and perform an emergency c - section!! You didn't cry or make any noise. Daddy and I were very scared L After a few minutes, you breathed and cried – the doctors said you were “stunned” J J I didn’t get to see you as you were rushed off to the special care ward. When I woke up I had a Polaroid photo of you by my side J J
I love you so much Rafael. It is not fair that you have been dealt the CANCER card L But you are brave, and strong, and LOVEABLE beyond words xxx
Last day of being a 5 year old for my baby L and my, how he has grown in the last year!! Yesterday we ran into Dr Peter at the hospital and instead of going to see him on Friday, he was able to squeeze us in J Rafael now weighs 14.7kgs and is 105 cms tall J J J Exactly 1 year ago he weighed 14.25 kgs and was 98.8 cms – so he’s grown a LOT!!! J
Rafael really enjoyed his party and he said the best part was the piñata J His party was dinosaur themed (again) and Tia Simone did a fantastic job with all of the decorations and balloons xxx
Thankfully it was only a 2 hour party – too many children for me to handle ;-) Mr Biscuit was the entertainer (again!) and he even had trouble keeping them all amused and interested. Luckily it was a nice sunny day and they were all able to stay outside.
We continued on into the evening and enjoyed a bbq with a few good friends. 3 girls stayed over, and I fell asleep on the sofa before them ;-)
When Goce came on Sunday morning to pick up the girls, he cooked us all pancakes – what a legend!!! Just what we needed xxx
Yesterday’s hospital visit didn’t go as planned and I have to say – Rafael is SO BRAVE!!
We went to nuclear medicine 1st for the injection that is used for the kidney function test. Duncan was very gentle and placed a small butterfly needle in Rafael’s right hand. No probs, Rafael is always happy to see Duncan and have a chat J
Then we went up to day oncology for them to insert a canula for the 2 blood draws that Rafael needed at 11:10am and 12:40 pm. Theresa told me she would start at 10:50pm in case there were any problems. Rafael had Angel cream (numbing cream) inside both elbows in anticipation.
There were 4 nurses working and about 3 patients waiting, yet they still didn’t even start on Rafael until 11:30 am L The 1st canula blew the vein in Rafael’s arm. The 2nd attempt in the other arm didn’t work at all. They could not get any blood to draw back.
Theresa called another nurse to help her. Poor Rafael, they ended up trying a vein in his wrist, but he didn’t have any Angel cream there – it hurt him a lot. He cried and I was so sad to see him with tears streaming down his face L Well, that one didn’t work either, another blown vein L
They decided to put more Angel cream on, wait ½ hr and call a doctor to try this time.
No luck, she couldn’t get it either. So now we are up to 1 injection in the morning and 4 canula attempts!!! Rafael was finally OVER it, but he didn’t throw a tantrum or anything, just kept asking to go home.
They called the doctor from nuclear medicine. By this time it was already 12:40pm, when Rafael was due to have his 2nd blood draw and they hadn’t even done 1 L Thankfully Dr Tim decided to pull the plug as it had already been too long since the injection was given and they would not be able to get a true reading of his kidney function by that time.
Therefore, we have to go back next Wednesday for take 2 ;-)
We did need to have Rafael’s blood counts taken via finger prick anyway. Well, not much luck there either!! The 1st prick wouldn’t bleed enough so they had to do another one, and it wouldn’t stop bleeding – hehehe – what a day!!
I called the hospital later and all of Rafael’s blood counts were ok, 4 weeks post RN therapy J J
Tomorrow is Rafael’s 6th birthday J Domingos and Rafael are going to the Australian Formula 1 as guests of Crown Casino!!! And it’s only for Dad’s and Son’s – I’m SO jealous!!!
Funny thing is, Rafael actually wants to go to school because it’s casual clothes day – LOL. We told him that there’d be lot’s more of those, but only 1 GP on your 6th birthday J J I hope they have a fantastic time, and maybe get to meet one of the Brasilian drivers!!!
Rafael's birthday party yesterday was HUGE!!! More than 30 children running and screaming around our backyard - arghhhhhhh ;-))))))
He had a fantastic day and loved having ALL of his classmates here to celebrate too :-)
I am busy trying to get the house back into order and I have to work tomorrow!
We have kidney function test on Tues at the hospital and it will take most of the day.
I'll update with pics as soon as I have a free minute or two ;-))
18th March 2010
Rafael lost his 2nd tooth on the bottom today - at school and he really lost it!!! The tooth fairy was a bit miffed ;-)))
Our dear friends Stuart & Patrice move to Boston tomorrow. We will miss them SOOOOO much :-( They have been wonderful friends to us, and their love for Gabriela & Rafael is that of true family :-) xxx
16th March 2010 cntd..
I saw this on the CNCF website some time ago, but kept it to myself, today I feel it's very appropraite:
Most parents hope
their child grows
up to do great
Some just hope
their child grows
16th March 2010
When Rafael was diagnosed, I spent most nights awake and in fear. I searched constantly for "Neuroblastoma anything" online, in desperate need of finding others like Rafael.
I was also led to an email group on ACOR, just for Neuroblastoma families. It has been a source of so much information for me, friendships made and it led me to the many blogs and online journals of other NB children. I read each and every child’s story, right back to the beginning of their journey.
Initially we set up this multiply site so that we didn’t have to keep replying to emails or calling family overseas and repeating ourselves constantly.
Now it has become a part of our and your lives. I write, I laugh and I cry ... I imagine you do at times too?
I found a boy named Erik and through his mother's writing discovered a LOT about NB!!!
I also found other families that had beaten the beast J Their children were happy and healthy and living normal lives. I also found families whose child has relapsed and were fighting the beast as hard as they could.
I learnt the term N.E.D. (no evidence of disease) What did that mean?? Sadly, NB doesn’t have the term remission applied L Doctors can say that from scans and tests, they can’t SEE any disease!! Does it go away? Ever? ....
Neuroblastoma is too evil to suffer alone. While connecting with families like us, I fell in love with each and every warrior and bare the pain of each one laying down their swords L
Erik’s passing really shook me, somehow, I thought he could “do it”, if anyone could beat this beast it would be Erik L Then shortly after I learnt the shocking news of Izobel’s rapid relapse and passing. Since then we have lost Westin, Santi, Sophie, Layla Grace, Lesly, Charlie, Sydney and Sam L L L It just breaks my heart!!!
All I/we have, is the knowing that these children are finally pain free and running and jumping and playing as children should J
I don’t fear for Rafael, all I have to hold onto is HOPE!! There are a small percentage of children that DO beat this disease and stay NED forever J Rafael HAS to be in this percentage, no ifs or buts J J
14th March 2010
I tried to update yesterday, but lost the post L
It has been an extremely sad time, in the Neuroblastoma World lately. Within a few short hours, we lost 4 brave warriors this past week…Sam, Charlie, Leslie and Sydney, have all earned their angel wings.
To all of their very wonderful families, I send you great hugs and feel the loss of your warriors immensely L L L xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
12th March 2010
We had a crazily busy week - sorry for no updates ;) Only 2 days off between trips this week has been hard!
Werribee hospital called me at 8am on Wednesday to say that the FBE blood had clotted. Therefore, I had to take Rafael back again for another finger prick blood test L
Wednesday was also Ivan's birthday and the children really wanted to get home and see him and hug him and play with him and give him his new Socceroos t-shirt!!! I made nachos for dinner and we had mud cake for dessert.
Thursday we were all sad as Ivan left to go home (Brasil). The children adore having their big cousin staying J J
I left for LA again on Thursday, my last trip away for 4 weeks - yeah!!!
Domingos worked from home and attempted to get Rafael's blood test results from either of the hospitals - no luck.
Finally, in the afternoon, Rod Hicks sent a brief email to Mingo :-
Hb 115, WCC 4.8, platelets 164
Therefore, all fine.
Therefore, all fine.
So that's good news. 2 weeks post radionuclide therapy and his blood counts are holding J
Gabriela and Rafael had to go to before and after school care again today :-( but they love it - they want to go every day now!!
I went to Party City last week and bought everything we need for Rafael's dinosaur birthday party next Saturday. Not sure how many people are coming, but he invited his whole class!! Arrghhhhh ;)
Can you believe, it will be exactly the same as last year??? Yep, dinosaurs and Mr Biscuit J Too cute!!
9th March 2010
Gabriela & Rafael were very well behaved for Auntie Stacey - they were even in bed by 9pm - not sure what time they slept??? J
Stacey took Gabriela to a birthday party at the movies, they watched Alice in Wonderland.
We were not sure if it would be too scary for Rafael, so he stayed with Uncle Goce and played with the twins J
Thanks so much guys for helping us out xxx
In the afternoon, Mingo took Gabriela & Rafael for their 1st swimming lesson in ages!!!! Steve was very pleased with Rafael's ability. He thought that Rafael would have forgotten so much J J Ah - the little fish is back ;-)
They ended up staying for 1 1/2 hours as the children were having so much fun in the pool. While they were in there, a really bad storm passed over Melbourne, hail like snow and loads of rain - and they didn't even realise!!
I arrived home on Monday. It was a public holiday, so we invited a few people over to help celebrate Ivan's birthday. I didn't get any sleep, and then we partied until 9 pm - I literally just fell into bed and was asleep instantly!!
Gabriela & Rafael had a great day with their friends over to play too J
After school today, I took Rafael to Werribee hospital for his blood test. It was great as it's very close to home and they have their own lab there. I should hear the results in a day or 2 from 1 of the doctors J
6th March 2010
Gabriela & Rafael have both gone for a sleep over at Auntie Stacey's J J Hope they behave!!!
Ethan's Mum wrote some very thought provoking things in her blog today http://www.caringbridge.org/visit/ethansmith/journal
I just wanted to copy some of them here for you to read, as they really hit me as being very appropriate:
"And Ethan is NOT dying of cancer...he is LIVING with cancer. 5 years ago...we didn't know...we'd have today. But God Bless him, we do."
"Some see a hopeless end, while others see an endless hope..... - Author Unknown."
5th March 2010
I am in LA and have some time to try and update Rafael’s blog J
We exchanged a few emails with Dr Peter and Prof Hicks this week.
I have copied them below. Basically, when Rod said that the skull spot had been there since the beginning – he should have said since the 1st Gallium PET scan showed it up in Sept 09!!
Anyway, their emails are quite technical, but you can read that they are not overly concerned; there has been no progression, disease is stable and clinically, Rafael is presenting very well.
I don’t want you to get “lost” or too bogged down in the technical details, but you’ll get the gist of what the doctors are saying ;-)
Urine catecholamine’s are used as a very clear indicator of NB and Rafael is tested every 3 months. NB tumours secrete a substance that is detected in elevated levels via a simple urine test.
Octreotide scan is the same as the Gallium PET scan – it looks for NB cells that have receptors to enable treatment with radionuclide therapy.
I must say “I LOVE Rafael’s doctor’s”!!! They are so patient, understanding and compassionate. They always take the time to reply to my many questions J J
Dear Tash and Dom,
I've managed to look at the octreotide scans but not the CT that correlates - I'm expecting to have that uploaded later today, but I have to go to MMC. However, I have also managed to look at the last set of Peter Mac scans from last year - which you may remember I wasn't able to see - to compare with what we have now. There is a lesion at the base of Rafael's skull, which looks to me to be in a region called the petrous/ temporal bone. I hadn't been told that this was positive before - it has been negative on MIBG and PET but may have been more difficult to see especially with PET activity in the brain. I asked our radiologist to look back at the octreotide scan from last year and compare, and there is a lesion in the same region but to me now looks more obvious. I can't interpret this though as I'm not an expert in these sort of scans. AN MRI or CT of the base of the skull might help with this, but it's possible that there is no difference from last year. With all the other areas, I'm not sure there's anything new. The area that's described behind the bowel needs to have a direct comparison but there has been uptake in that same region, although that was before the surgery.
The whole idea behind this Indium therapy is to kill off these residual sites - as you know it's a more concentrated form of radiation and uptake into these areas will hopefully do the sort of cell damage that we're looking for. We also need to take stock and remember that the last urinary catecholamine excretion was normal, and it would be very unusual to have rapid tumour growth (after surgery) that's not producing catechols. Rafael has had some residual disease but it seems to have remained quiescent for quite a long time - and while it's unpredictable, each time I've seen him lately he has not had the sort of clinical concerns that would indicate impending relapse. This is hard to quantify - but I guess comes with experience.
So my summary is that he should have MRI or CT of base of the skull to look more closely at the bones, and we need to monitor these sites following on now from the therapy - and he needs ongoing clinical review to assess how he is overall.
As I explained to Dom and Tash, it is not unusual for abnormalities that are either subtle or not apparent on diagnostic MIBG or In-111 octreotide scans to be much more obvious on a post-therapy scan because we are administering much more radioactivity and waiting much longer until scanning.
This increases clearance from normal tissues, enhancing the contrast between normal tissues and tumour deposits. The area around the petrous temporal bone is very hard to evaluate on MIBG scans because of uptake in the salivary glands and oropharynx and on Octreoscan due to physiological pituitary activity but there has clearly been subtle asymmetry in this region on previous studies. The abdominal soft tissue activity also isn't new, it was there on the previous Ga-68 octreotate PET/CT but, as I explained, is located in a position that would be very difficult to access surgically. Most of the previous soft tissue uptake has been successfully resected by Yves.
As you say, we wouldn't have been treating Raf if we hadn't thought there was still disease present but the nature of that disease is almost certainly neither high-grade nor large volume. I understand the anxiety that Dom and Tash express, but I hope that they realise that I would certainly communicate any concerns that I might have had regarding progression of disease. I have none.
Hi Peter , Dom and Tash
I’ve reviewed my report of the Ga-68 octreotate scan from December. The right petrous temporal bone abnormality was certainly mentioned at that time and is clearly not new. I may not have specifically mentioned all sites of disease but rather generically communicated that we were confident on the basis of this scan that there is residual bone disease with sufficient somatostatin receptor expression to warrant radionuclide therapy. I don’t know that it is particularly useful to enumerate every single site of disease when discussing a systemic disease but understand that Dom and Tash would be concerned if they got the impression that there was disease progression. As I said in the earlier email, I don’t believe that we have any reasons for concern in this regard.
Sorry for not updating sooner!!!
Have spent a few days emailing Dr's and we had a very busy weekend!!
I worked on Monday and I am off to LA again tomorrow L
All is good with Rafael :-)) He has had NO side effects from the new treatment J J Let's see what his blood counts do in the next 4 weeks!
My Mum has gone "walkabout" again, so we are truly on our own now L Gabriela and Rafael LOVED their 1st day of before and after school care J J Rafael added another girl to his Harem!!!
I will try to update again from LA when I have some free time. Lot's to explain, but basically, those scans last Friday didn't show anything new to some doctors and there is no fear of progression J J J