6th January - surgery is confirmed :-( Prof Heloury has written and now asked us to come at 5pm on 5th Jan. I think that's better for Rafael as he can have a good night sleep, and not wake up early for the long drive there, especially since he'll be fasting :-(
I am still trying to find a motel close by that we can stay at! Wednesday will be a very long and stressful day for us :-( Just the thought of what they are going to do to little Rafa's bodies scares me so much :-( But the aim, to get rid of this beast inside of him, has to outweigh my fears - surely???
As for visitors, let's say for now, not... until at least Thursday 7th. We are hoping to transfer back to RCH as soon as possible, and that will ease the travelling and enable more visitors!!
Get Well cards are welcome :-)
We'll try to get Skype set up too
xxx
26th December 2009
Santa left lots of small presents as well as some big ones. They didn’t know where to start!! Within 45 minutes, the lounge room (and house) was strewn with discarded wrapping paper J There were many shouts of delight and glee, as well as asking to open everything NOW!!
The rest of the day was spent relaxing and enjoying the company of our very small family. Domingos & Ivan were able to talk to their families on Skype (one of the best inventions – EVER!!)
After a late lunch, I even managed to have a cat nap J
Hope you all had a great Christmas too!!
Today was a lazy day, except I spent 3 hours doing ironing – urgh!!
Stuart & Patrice called and invited us to go for a bike ride with the children. Rafael did really well. His bike is tiny, so he had to pedal really fast, all of the time, to keep up J We stopped at a playground and they played for ages. On the ride back, Rafael fell over on the gravel path and hurt his knees and elbow L Poor darling, he was so brave – kept pedalling all the way home with bleeding knees L Gabriela was so tired and couldn’t wait to get home and finish the ride L
For the 2nd night in a row, I tried to watch a movie and fell asleep on the sofa J J I’m just not a night owl ;-)
24th December 2009
Very busy day for us!! Left home at 8am , expecting to still be fighting traffic, but had a smooth 30 min. run into the hospital J
Went to day oncology first to see if they could do Rafa's last dose of antibiotic and his dressing change. No probs. - they did it for us J
Meeting with Peter was fine, not much to talk about after all our email exchanges!! Rafael weighed 15.65 kg L and is now 103.2 cm tall J
Peter Mac called while we were there and asked us to come in a bit earlier so they could put a cannula in. I told them I was at RCH and would ask day onc. if they could do it? Yep, no probs J Had to wait a while for the Angel cream to work at numbing Rafael's arm. Tia Carla did a great job and got it in 1st go J Rafael got a bit anxious as he likes to watch these procedures and the needle is very scary L
So by 12 we were off to find a park in the city and meet Daddy. We went up to his office and then out for lunch.
This took us up to the time of our appointment at Peter Mac. All went smoothly; we found a park out the front and went in 1/2 hr early and didn't have to wait too long. After they administered the gallium for the scan, we had to wait 1/2 hr for it to go through his body and Lela had to keep away from him as he was radioactive!
Mingo went in with Rafael for the scan. It didn't seem to take too long, I was dozing in a chair ;-)
Prof Hicks was already there and was able to look at the scans as soon as we finished J
So, no changes since September. There is something (?) on his R leg L Therefore the plan is plan A - surgery is the next step - very scary L After that, Rafael will go to Peter Mac to have Indium radionuclide therapy. They won't be using the Lutate - therefore Rafael won't need his central line J J J Yippee.
So we plan for Rafael to keep it in for the surgery and before he is discharged they will remove it J J J 18 months later - can you believe that?? If he ever needs one in the future, he will have a port instead. With that, he can go swimming, shower etc and it’s much neater and easier to look after.
Prof Heloury's secretary called me to say she had booked surgery for 6th Jan. I asked her to repeat it, yep, 6th Jan. But then she said it's a Tuesday - which is the 5th?? She had a very strong accent and I didn't understand her too well. Anyway, easy enough to confirm that.
All I know is that we have to be there at 7am . Ronald McDonald house said we can't stay there as we don't live more than 100km's away - yeah, do they count how long it takes to drive there???? Yves said he expects a recovery of ~ 10 days. Not sure how long Rafa will be in hospital. We have asked that Rafael be transferred back to RCH after the surgery and he is well enough to travel.
Christmas Eve was spent at Patrice and Stuart's house J J J The children had a fantastic time, and when Santa paid a personal visit - they went crazy!!! Rafael got a large Bakkugan and was so ecstatic - he couldn't believe it J J J
Ah, Christmas, having young children really makes a difference to the whole day - it's the best J J
Dom's cousin Ivan finally made it to our house about 10:30 pm . By that time I was shattered, having been up since 4:30 am :-( Just had time to leave cookies and milk for Santa and a carrot for the reindeer. Gabriela and Rafael literally fell into bed J
Merry Christmas to everyone. Thank you for your continued support of our family, and reading and watching as we battle this beast of a disease. Thank you for your messages, your cards and your friendship.
Love to you all xxx
Happy 7th Birthday Gabriela xxxoooxxxoooxxxxoo
We all love you so much J
Sorry you had to wait until your sleepy head brother woke at 11:15am to unwrap your presents ;-)
22nd December 2009
Rafael came home on Sunday morning J Dom called me at 10:10am and by 10:50 am I was picking them up from the front of the hospital J
Yesterday we got the nurse to disconnect the saline drip from Rafael's lines for 6 hours so that we could go downstairs to the Starlight Room. Captain Red was there (1 of Rafa's favourites) We ended up spending most of the time beating Mingo at Wii bowling ;-))))
All Rafa wanted to do when we got home was go to Tadgh and Ryan's house for a play. We just found out that they are moving to Boston
The nurse was due to come at 8 am on Monday but got here at 9. I had trouble waking Rafael up J The antibiotics have to be diluted with water and then given through each of his central lines (2). The whole thing took about ½ and hour. After that I had to rush Gabriela and Rafael to have breakfast as we had to be at Peter Mac at 11am .
Prof Hicks was running on time and we walked straight in. He spent a 1 hour with us explaining how the new treatment works and the options for Rafa. I must say, Prof Hicks is amazing! They have used this treatment in an adult cancer that is similar the NB, but never in children. It is only being developed here in Melbourne
There are about 4 – 5 children here in Melbourne
The down side is that we have to go back on 24th Dec for 1 more Gallium PET scan.
Prof Hicks confirmed that having surgery as the next step will help the radiation get to where it needs to go.
So we went home with a “'plan” J J
I emailed Drs. Peter and Yves on today and Yves confirmed that surgery is booked for 7th Jan. Then a few hours later, Peter wrote back saying that we need to wait until Thursday to see the results of the scan!! His reasoning is very clear and makes a lot of sense - it's just that in the last week we have been going up & down, 'round & 'round!!!
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Dear Tash and Dom,
We need to wait now, then, for the Gallium PET scan results and see if there's been any change since starting the vaccine therapy. If it looks the same or better, then surgery is the next step to get to minimal residual disease, followed by further indium based treatment as Rod has outlined. If it looks worse, then I would suggest going ahead with the indium radiation according to Rod's recent presentation as there have been some promising responses - as I'm sure he discussed with you. If this is what happens, then another review with imaging/restaging like we have just done should be re-done in around 2 months (or after the indium) with the view to surgery +/- chemotherapy again then. It may not be necessary - we need to see.
This then takes us back to plan A and/or plan B; plan C originally was to use the stem cells with the chemotherapy only if we have to - and I would prefer to keep them up our sleeve. Using HD chemo and stem cells was only floated as being used as an adjunct with the indium after I'd had the discussion with Rod 2 weeks ago.
Regards, Peter
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So now we wait until Christmas Eve to have a more definite plan. The good thing is that we are seeing Dr Peter in the morning and that Prof Hicks will read the scan that day and give us the results straight away J
Rafael is back in hospital L L
On Thursday, a nurse came to our house to change the dressing over his central line as well as flush the lines (he has this done every week). While she was here, his temperature was 37.7C. When Mingo arrived home, it was 38.3C. We called the hospital and they asked us to check it again in 1 hour and then call them back.
Mingo went off to play his last soccer game for the year. As soon as he left, Rafa's temp. went up to 39.5!!!! I went straight upstairs to start packing his bags. It's been so long between emergency hospital runs that we don't even have a bag ready to go anymore!
My Mum came over to pick up Gabriela. We arrived just after 9pm , pretty good run in. Rafael was feeling very cold and shivering L We went straight though in the ER and they hooked him up on a saline drip and took some blood for cultures as well as normal tests.
Rafael was so tired, but all he wanted was to finish watching Transformers. It finally finished at 11:45pm and he was asleep within seconds L Just after 1 am , we were sent up to a ward (4).
I was SO tired, I arrived home from Singapore
In the morning, Rafael's temp. was 38.3, but went down during the day. Mingo & Lela came in the afternoon and that cheered him up a lot. We went up to day oncology to say Hi and ran into Olivia and her Mum, Fiona. We stayed there have a long chat about treatments and Peter Mac. They also have an appointment with Prof Hicks on Monday J
After the doctors did their rounds, Gabriela and I headed for home, via Costco J If Rafael's temp stays down, he may be able to come home soon.
Mingo called late last night to tell me that Rafael had a 40C temp. L L
This morning they both woke up early and had a shower. Rafael's temp has been down all night, but I doubt that the Dr will let him leave until tomorrow. Their rule is 24 – 48 hours without a fever.
Plus, the blood culture did grow. Rafael has an infection inside his central line. They have changed his antibiotics and he will need it I.V for the next 7 days!! They have already arranged for a nurse to come to our house each day to give it.
We have been exchanging MANY emails this week with Dr Peter and Prof Hicks. I don't have time to write now as we are heading into the hospital.
Rafael has a tentative surgery date of 7th or 8th Jan. We have a meeting with Prof Hicks on Monday at 11am and Dr Peter on Thurs.
Bye for now
xxx
OK, that’s weird, I had updated during the week, but now I see my post has disappeared :-(
Rafael did well with his GFR test last Tuesday. We arrived right on time at 10 am for his injection. The cannula held up nicely overnight :-( It was taped down a LOT, so I can see why it didn’t move :-)
Rafael’s favourite nuclear medicine technician, Uncle Duncan, gave the dose and all gave Rafa a cute Xmas hat with lights on it :-)
After that we headed up to day oncology to have the blood tests done: 11:20 am and 1:50 pm.
Rafael was very happy once Jordan arrived and they sat in a chair together playing Nintendo DS all day :-) :-) too cute!!
Wednesday was a free day for us!!!! I was so tired I could have slept all day :-( But alas, my 5 am wake ups still continue :-(
We had to be at the hospital by 11am on Thursday, but Rafael knew that Jordan would be there as well, so all morning he bugged me to take him TO the hospital :-) We got there very early, about 10am, did the finger prick blood test and headed upstairs. We were a bit too early for Jordan ;-)
However, Charlize and her Mum were there too :-) We have been emailing and talking on the phone, but it was so lovely to actually put faces to their names!! Charlize is 4 and she has been battling NB for 2 years :-(
We also caught up with Ruby and her Mum this week, so lovely to see them too :-))))
Dom came and met us for our 12pm appointment with Dr Peter. Rafael gave him a Xmas card and Dr Peter thought Gabriela’s missing teeth were very funny indeed :-))))))
We were very scared to go into this meeting, scared of what the tests results would show. Dr Peter was very happy with the results. Me? – I’m so-so :-( Basically; ALL of the tests results were the same as September. What does this mean? It means that there has been no disease progression :-) :-) but, that Rafael has stable disease, yet no reduction :-( The left trephine still shows neuroblastoma cells. The blood test they did for Rafael's vaccine therapy showed that his immune system is working well, but they have no way of truly testing if it is working. Urine test was the same as last time. Rafael's main tumour now measures 2.9cm by 1.1cm :-)
The good news was that his kidneys are still continuing their struggle to return to normal!! His GFR is now 85 :-) :-) woohoo!!!
Dr Peter started talking to us about what options we have available now. He surprised us: Prof Hicks had been to the RCH to give the oncologists a presentation on the radionuclide therapy they are trialling at Peter Mac. It is only being used at another hospital overseas and Peter Mac. The results they are having with the treatment in a similar type of cancer blew Dr Peter (and the rest) away!!! In his own words “I was very sceptical of this new therapy at first..”
The problem is that Prof Hicks has been away overseas so much lately, that trying to get in to see him is difficult. Dr Peter called him while we were there, but couldn’t reach him. He left a message for Rod to call back on Friday.
So the plan now is for Rafael not to have the surgery, to consult with Peter Mac again, maybe have the final 2 doses of vaccine and if not needed, remove Rafael’s central line next week :-) :-)
Gee, this surgery has been off and on the table so many times!!!
Gabriela’s last day of school was on Thursday and then we had to rush into the city to get to the town hall for her speech night. In typical Melbourne fashion, it started pouring just after we got out of the car :-( Gabriela and Rafael thought the rain was a lot of fun!! The night dragged on and Rafael was extremely bored, but he did well and we didn’t even need to do a toilet run ;-) They both fell asleep in the car on the way home :-)
Unfortunately for Rafael, he has missed the last 2 weeks of kindy due to all of his appointments as well as his graduation party as it was on Thursday night too :-( :-(
We held Gabriela’s birthday party on Friday afternoon with her friends from school :-) We booked 2 tables at the Waterstone café for them to have afternoon tea. Oh my gosh, how loud and crazy can 20 seven year old be??? :-) :-) :-) Gabriela had a ball and really enjoyed herself. Happy nearly birthday my princess xxx
Afterwards a few people came back for a bbq :-) :-) Yum, yum!! Poor Lela, she was bitten alive by mosquitoes :-( :-( Her face and arms are covered in bites and some have swollen up a lot :-( :-(
At the end of the night, I checked my email as Dr Peter had promised to write to us after he talked to Prof Hicks. Well, he surprised us again!! Both surgery and stem cell rescue are now back on the table!!! Can someone please stop this roller coaster as we really want to get off!!!
From their discussion, it seems that Rod believes that getting Rafael to Minimal Residual Disease status (surgery) will give the radiation a better chance of attacking any small pockets left. They can also use chemotherapy to knock down the immune system and then give Rafael's stem cells back. We had talked with them about this option before, but I think RCH was a bit sceptical about using these treatments.
Here is Peter's email – it's medical jargon, but hey! - welcome to my world ;-)
“Dear Tash and Dom,
I've had a discussion today with Rod Hicks and the upshot is that there is some evidence for potential further localised radiation - the caveat is to think about getting absolute minimal residual disease - meaning going ahead with a debulking surgical operation, followed up with the octreotate/indium and stem cell supported chemotherapy as a single therapy. As we discussed yesterday, I still have the use of the stem cells in the back of my mind, but hadn't thought that we could use both this and local radiation therapy at the same time. The problem is that we don't have any collected data about whether this is the right treatment but it makes sense that if we are aiming at targeting isolated pockets of residual NBL cells, even if they're not actually "active" the best time to get them would be when they're at a minimum.
Rod is in Melbourne for next week, and I think it would be useful to get an appointment with him to go through the use of indium again (+/- LuTate which to me sounds the more promising). I'll speak with Yves and let him know - I wasn't able to get hold of him today but will either get him over the weekend or first thing Monday morning. My feeling is that the plan should be another octreotate/gallium, followed by potential debulking, followed by localised radiation coupled with SC-supported chemotherapy; all of this is contingent on what the initial scan shows. Let me know once you've organised an appointment with Rod.
Thanks again for the pictures of your beautiful children yesterday - and hoping that your party went well today.
Regards,
Peter
Once again, our plans have changed and we can't make any other plans until we get an appointment with Prof Hicks. Hopefully Prof Heloury can give us a date for Rafael's surgery soon! I'm meant to go to Singapore on Tuesday, but not sure now :-(
7th December 2009No time to update as properly as I'd like :-( It's been "go, go, go" here lately
Last Thursday Rafa had his appt. with Dr Peter and then his 4th vaccine. We didn't have many ?'s for Dr Peter as we'd just seen him on Tues.
When the nurse was giving the vaccine, Rafael pulled his leg away (had to go in his groin!!) and a tear drop size came out. The researcher and developer, Dr Caruso, said that was ok as this dose had lot's and lot's of cells.
On Saturday we went to the Challenge Xmas party. The children had a blast!! They spent the longest time on 2 rides, the giant slide and a chair thing that goes around and around. I think they must have climbed the giant slide stairs about 100 times between them!!
We met Olivia there as well as Jordan. Rafa even got to have a slide ride with Jordan and his cousin :)
They went on dodgem cars, the ferris wheel, in Cobra cars and a Cadillac. They ate fairy floss, ice creams, donuts ... no wonder Lela felt sick!!
We had another 2 parties to go to afterwards but only made it to 1- we were all so tired, we could not even stay awake to watch the fireworks from our balcony!! Gabriela lost another front tooth tonight, but literally LOST it - it's gone!!!
Sunday was spent at Dom's work Xmas party. It was at the Scienceworks museum. We knew it would be hard to get them to leave - and it was!!!
Today we all had to be up very early as Rafael needed to be at the hospital by 8am. We dropped Gabriela off at Stacey's on the way (thanks gorg) and arrived right on time. Except the hospital had other ideas!! Rafael was fasting and very tired, he just laid on the sofa between Dom & I, almost sleeping and saying he was hungry :-( He did not go in for his bone marrow aspirate until 9:40am :-(( That took about 15 minutes and the Dr said it all went well. They called us into recovery early. Today rafael took about 45 minutes to wake up properly and he woke up perfectly!!! No delirium, no tantrums!! :-))))
He was very tired and slept most of the way home. Then all he wanted was his Daddy to sit next to him. He looked very pale and tired and vomited a little :-(( It took him until about 4pm to really come back to normal :-)
Whew - and that's just the last 5 days in brief!! Rafael had a cannula put in his hand today for his injection
tomorrow at 10am. Afterwards, they take blood at 1 1/2 and 3 hours and check it to obtain his kidney function. We are trying to get as much water into him now as possible! Hard when it's bedtime ;-))
ps: Did I mention that we are all VERY tired ;-)))) xxx
1st December 2009
We trekked off to Monash Medical Centre this morning for a joint meeting with Dr Peter and Prof Heloury (Yves). Rafael was very excited when we told him that we were going to the hospital to plat golf :-)) He asked if he was having a needle? When we said no, just meeting the doctors, he said “talking, talking, talking” :-)))))
The meeting was very delayed and that gave Rafael lot's of time to play 4 holes of mini golf outside the Children's Cancer centre. Then he played cricket with Daddy – now THAT was a sight!! The 2 of them have never played before, ever!!!
The meeting went well. The had a copy of Rafa's CT scan and put it up on a big projector screen. The tumour is the same as last time but it looks like there might be a very ting gap (size of a piece of paper) between the aorta and tumour now. If that is true, then Yves might be able to remove the whole tumour without having to scrape along the aorta. He said that it is about 3 or 4 cm in size. They won't know for sure until they go in. There are about 3 small calcifications behind the aorta and between the vena carva. They look they might be too dangerous to remove.
Dr Peter agrees that the risks of trying to remove the tumour are worth it. He also said that if we asked any other surgeon in Melbourne, they would probably still say “no”. However, he has a lot of faith in Yves experience and knowledge.
Yves said that he couldn't see too many risks or complications. The main cause for concern is Rafael's left renal artery, as the tumour passes very close to it too, and they don't want to put Rafael's kidneys under any more stress.
We ummed and ahhed about the “best” time to perform the surgery and explained that we prefer earlier than later so that Rafa can be fully recovered before he starts school. Yves has requested another GFR (kidney function) test and Dr Peter wants to see the bone marrow aspirate results.
We are booked in on Monday for the BMA, but may get a slot on Thursday if there's a cancellation.
Therefore, the time frame Yves was proposing was late Dec. / early Jan. They will have all of the test results by the end of next week and we'll wait to hear.
Yves didn't seem too keen to do the surgery at RCH as it would mean he has to travel to visit Rafael, but we will push for it as the drive to Monash is so long!!!
Rafael and Gabriela were very excited in the morning to realise that it was 1st Dec – Xmas tree putting up day! Well – do you think Rafael let us hear the end of it all day??? Nope, he must have asked about 100 times if we were going to put the tree up when we got home! Of course, we did and it only took about 1 ½ hours!!!!
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