Rafael had a clinic appt. today and we checked his blood counts beforehand. As expected, he needed a platelet transfusion but I was surprised that he needed blood too. Was a very long day for us :-(
As expected from yesterdays results, Rafa needed a platelet transfusion today. While we were there, this massive bruise popped up!! Apparently it was from Rafa trying to turn off the tv with the remote and it dropped on his head!!
The nurse came to our house to give the PEG injection and also took some blood to check counts.
We picked up Gabriela today and she’s had a truly wonderful 2 days at SOTH!! I love hearing her chatter away about all the dogs and how Coco slapped her while she was asleep
Rafael had many cuddles today, but now he wants to adopt them all!!
We spent the day at Saffron on the Hill. Lela & Rafa gave the pugs their Easter gifts ;-)
Gabriela stayed at SOTH and I'll drive up on Tuesday to pick her up. She's very excited about sleeping over for 2 nights with all those dogs.
Here is a link to the video of our day :-)
Very busy at RCH today - it was the Good Friday Appeal and the biggest day of fundraising for RCH, lots of special visitors, treats, eggs and smiles :-)
It was crazy today, people in and out of the room all day. No "quiet time" on the ward at all ;-) Most people would ask first if they could come in and visit. After a while Rafa got fussy -"who are you? - Carlton - um no thanks" etc ;-)
Gabriela and I joined the Point Cook CFA this morning to door knock and collect money. Unfortunately the weather turned and we were stuck in a downpour! Thankfully we were at a house that had a carport and the lady let us shelter under it ;-)
Rafael really enjoyed visits from Jai, Melbourne Victory and Molly Meldrum. Well, it was actually Mummy that loved chatting to Molly, but Rafa loved the big cuddly rabbit teddy that Molly gave him :-)
Finally, after 6pm, Rafael was discharged and we could leave!!!!
13,148 !!!!!!!! Finally every card that is in our house has been counted I hope it slows down a LOT now :-) Thank you to everyone who sent a card (or 50!) xxx
Dom stayed at the hospital with Rafael today and I was able to get through the last of the cards :-)
7 days of chemo has been changed to 10! Longest cycle ever .............
Rafael was admitted today for the last 2 days of this cycle. Dr Michael has decided to add Temozolamide to replace the doxorubicin. It's oral chemo and he'll take it for 7 days. He hates it so much!! :-((((
It was a very long day for us, these things always seem to take forever to start and finish!!
I was really tired so I climbed into bed with Rafa ;-) Think I managed a 5 minute power nap ;-)
Topotecan again ;-)
Topotecan with Lela to keep us company ;-)
Dom took Rafa in this morning for his Topotecan round. It was a little delayed and they were hoping not to miss the surprise that had been arrayed for Rafael ;-)
Rafael was sent a poster from the RAAF Roulettes for his birthday.
Started Topotecan today, as outpatient, it's very quick, about 45 mins all up.
Had an absolutely awful day at RCH today ;-(
Very long story, but chemo did not start as Rafael need an echocardiogram first to test if his heart could cope with any more Doxorubicin chemo.
This next cycle would have put him over the max limit allowable and the echo today showed that his heart was already at the "fractional shortening" rate of 29%. This means that he is at risk of heart failure in the future
Nothing ever seems to go smoothly for our Warrior - loss of hearing, renal failure, and now borderline heart function!! :-((((
Instead of having the 3 chemo's TVD this cycle, he will only have T & V. This will be reviewed on Tuesday, as his Dr may be able to add Cyclaphosphamide instead - still to be decided.
So he will start T (Topotecan) tomorrow and now we won't be discharged until Good Friday.
Had lengthy phone conversation with Dr tonight and lots more to discuss on Tuesday xxx
Our long awaited scan at Peter Mac today
All went well, no problems.
We met with Prof Hicks afterwards. Rafael was wearing the t-shirt that Rod had sent him from Spain :-)
He showed us the scan, which still has a lot of disease, but much less intensity than the last ones.
As Rod hasn’t seen the mIBG scan from RCH, he cannot compare them.
Rod had a meeting with Dr Michael 2 days ago to discuss Rafael and his future treatment options. Although Rod would really like to try some more PRRT, he does agree with Michael that this current plan seems to be working (slowly) and all avenues need to be explored.
Met with Dr Michael today to review the “plan”.
Travelling to Brasil for the World Cup is getting closer and closer and Michael is helping us to ensure it happens! However, over the last few months, the intensity of Rafael’s treatment has been scaled up, and we’ll need to scale it down for 5 – 8 weeks.
The “plan” keeps evolving ;-)
Rafael will start his 3rd cycle of TVD this Friday. Before that, he needs another echocardiogram to test his heart, as he's almost at the limit of the amount of doxorubicin he can tolerate. However, there is a very expensive drug ($50,000) that he can have to protect his heart
Rafael will finally have another Gallium PET scan at Peter Mac tomorrow as the MIBG result was "inconclusive"!!
Long story, but the Dr who wrote the report said that there is major progression and the scan shows multiple sites of disease, much worse than the last scan :-(
However, we don't (us and Dr Michael) believe them!! The last MIBG scan at RCH was years ago - what are they comparing it too?? And clinically - Rafael is in such a better state than he was 1 year ago. Therefore, after much pushing on our side, we get to got to Peter Mac tomorrow and do a very specialized PET scan, the type Rafael has been having for years! That will give us a true indication of the extent of disease left :-)
Plus we get to talk to Prof afterwards - and we know he'll give it to us straight!
On the up side, the bone marrow aspirates from last week showed great results!! His bone marrow is now clear (almost) of disease and is classed as disease free!!!!!! Amazing :-) The trephine (boney part) still has disease, as expected :-(
The short-term plan is for this cycle of TVD on Friday -> Thursday, 4 - 5 weeks to recover and then 1 cycle of Irinotecan/Temozolomide (which Rafael has coped with very well), to allow his body to recover enough to travel to Brasil on 10th June!!!! Rafael is a Brasilian citizen, so if he needs transfusions etc whilst there, he is covered
As soon as we return, 15th July - his treatment will be ramped up to high dose levels He will be out of action for the rest of the year. The "plan" is for high dose MIBG therapy in Sydney, followed by a stem cell transplant, recover, and then knock him down again with high dose chemo (Busolfan/Melphalan) followed by another stem cell transplant!!!
The hardest year of all in this ongoing battle But our Warrior has all of you and us behind him and we, his parents (project managers) are leaving no stone unturned!!!
After all of that, the hope is that he will finally qualify for immunotherapy, which has proven to increase survival rates by 20% !!!!
We had to be at RCH by 8am for Rafael to have a platelet transfusion before he could go to Day Surgery for Bone Marrow/Trephine aspirates.
Unfortunately, they did not apply the usual pressure bandage afterwards and one side kept bleeding a lot and we were not allowed to leave until after lunchtime, once it stopped :-(
A huge shout out to Tierney for helping me count hundreds and hundreds of cards tonight, as well as my Mum and Rosie who helped on the weekend. Also the local P.C. Mum's who helped make a dent last week
Although we are still a few boxes away from the end - we can see the finish line :-) And the total so far will blow you away!!!
Never, in Tierney's wildest dreams did she imagine she'd create this
Huge thank you to Wyndham Learning for being our mailbox xxx
Drum roll ..............................
counted so far -
The Wynham Weekly sent a photographer around to capture the enormity of the response to Rafael’s request for cards J Love these pics ;-)
Not happy, had typed a lengthy blog update using Blogger on my iPad, saved it as a draft and now it's gone :-( Rafael is doing very well, he's starting another cycle of chemo tomorrow. xxx
I've received many emails from people asking me to update this blog :-)
Sorry - it's been a crazy, busy few weeks!!!
I am away fro work for a few days and hope to get on top of this asap :-)
Just to let you know - Rafael made it to Camp and had a fantastic birthday with his school friends :-)
We are still opening and counting cards, as at last Friday we passed 11,000!!!
You can see why I've been busy ;-)
Thank you for your birthday messages, cards and letters