Rafael had another butterfly blood test today - but didn't need any transfusions - just ;-) Counts are still low, but acceptable ;-)
However, still too low to start chemo on monday ;-( We will recheck then xxx
Rafael made it to school most of this week!! The most he's been there this year :-)
On Rafael's Facebook page - Rafael's Warriors, a lady asked her family and friends in Canada to send postcards to cheer Rafa up.
I suggested to her that since it's getting close to his birthday, maybe they could be birthday cards too ;-)
Then another lady (Tierney) shared it on her Facebook page and somehow our local paper heard about it and ran the story today in the newspaper ;-)
Dr Michael is finally back from his holiday ;-)
We met with him today and I had to go through all of the past 3 weeks events with him ;-)
He, and we, agree that Rafael coped very well with the 1st cycle of TVD. Although the pain afterwards wasn't expected.
Michael is even happy with Rafael's count recovery :-)
However, he wants Rafael's platelets to rise to 50 before we can start the 2nd cycle. We are already into week 4 now and it looks like it won't start until next Monday at the earliest - week 5!!!
These cycles are meant to be 3 - 4 weeks apart. However, given the state of Rafael's bone marrow, it was expected that he'd take longer to recover.
There is an article in the Port Phillip newspaper today about a Gala Fundraiser that our dear friend Rosie is arranging on 28th March. I'll post the link separately xx
Dom took Rafa into RCH today for a blood test. Yep - platelet transfusion today :-(
Rafael went in his school uniform so that Dom could drop him back at school after the transfusion. They left home nice and early to avoid the traffic and day onc was running on time and they ran the platelets through very quickly.
However, we are still not sure why, when Dom arrived at school - Rafael refused to go in!!! Nothing Dom said could convince him to get out of the car. One of his teachers car out to the car and tried talking to him. But after an hour of tears and frustration, everyone decided it was best to just give up :-(
Another blood transfusion today :-( I did get a nice surprise when my friend Pete from Tassie popped in on his way to the airport to say "Hi" ;-)
After chatting to Kaz from Saffron on the Hill during the week and saying how Rafael has been doing it really tough the last couple of weeks - she decided to visit!!! With 5 pugs too :-) They all piled in the car and drove 2 1/2 across Victoria to surprise Rafael and Gabriela :-)
We snuck them around the back and seeing their surprised faces was priceless!! Granny Giggles, April Anne, bob, Leo and Lily stayed all afternoon and Dom made one of his special Brasilian cakes for Kaz as we know she loves them ;-)
While the nurse was here today we got her to do another finger prick blood test.
Just after lunch, the hospital called and told us to take Rafael to the E.R. straight away for a platelet transfusion as his count was <10 :-( It all went smoothly as they were expecting us. However rafael was in a room without a tv and not very happy about that ;-)
While the nurse was here today, she also took Rafael's blood and blood for the CD34.
Jayne called later to say that Rafael's white cell count was a little higher, but his Hb was down to 84 and platelets only 12!!!!!
Thankfully, as he's not bleeding or bruising, they've decided to hold off on a transfusion and he will be reviewed on Tuesday.
Until then, he will continue all the medicines and we hope his counts will rise :-)
Dr Andrew (who is a fellow) but was left in "charge" of Rafael by Dr Michael came in with our nurse co-ordinator Jayne.
We had a really long chat about Rafael's pain, his not eating, his counts, the next cycle etc. Finally I had the chance to ask "Can we go home now??"
They don't usually discharge children who have 0 neutrophil counts, but Rafael hasn't had a fever again all week (was caused by platelets, not an infection)!
So they agreed we could go home today :-)
Rafael will be attached to a bottle that has a self deflating ballon inside filled with antibiotics.
A nurse will come to our house every day to change it as it only lasts for 24 hours. He is also taking an anti fungal medication and continuing the GCSF shots until his counts recover.
Lots of stuff to bring home!!!
I arrived home this morning.
I waited until the afternoon to go in, so that I could go to Gabriela's assembly and see her inducted as a school leader :-)
We both went in after that, as she hasn't really seen Rafael for 2 weeks either :-(
Dom was glad of the chance to swap over with me and go home after his long stay here ;-)
Rafael was due to start a special blood test today called CD34 to see if he's still producing stem cells, in the hope that we can harvest some more. However, his counts need to be going up for it to be detected :-(
Dom sent me this photo - Rafa is much better today, talking, sipping water and trying to eat a little. He doesn't need a blood transfusion as his Hb went up!! :-) :-) :-)
It's been a very long and trying 2 weeks :-(
I have had to go away for work and won't be back until Monday :-(
Daddy and Rafael are having a really tough time at RCH on their own. Rafael is miserable, still in a lot of pain and still not eating :-(
There has been a HUGE breakdown in communication this week among the oncology doctors, they've said they will review Rafael, yet never come to see him! Domingos is beside himself with stress and anger and Rafael is suffering - a lot!!!
Last night everything boiled over and Dom had to physically go down to the oncology ward to try to find a Dr - they had all left for the day!!!
Very late last night, they moved Rafael back to the oncology floor and have started him on a Morphine infusion :-((((
When I spoke to Dom, he said that finally a Dr came and took the time to examine Rafael and make a "plan" for the next few days. Rafael will have another platelet transfusion today and a blood transfusion tomorrow.
They'll keep him on the morphine IV for 24hrs and then try to ween it down.
If he doesn't start eating soon, they will most likely have to put a NG tube down Rafael's nose/throat to give him nutrition :-( It's something that Rafael really DOESN'T want, but he's even refusing to take oral meds now too :-((
Looks like no chance of going home any time soon :-((
"From Domingos - A very welcome visit of the whole Gallo family this arvo. Thanks Michele Gallo and Jessica. And they brought along this weekend's pizza treat!!! Believe it or not, Rafa slept through most of their time here!!! :))))"
Another bad day :-(((
A few photo's that were sent to him made him smile, but the rest of the day was sadness and tears
We tried really had to get him to try to eat something - anything!! He can't move his jaw and is just miserable :-(
His throat and ears are causing him so much pain, he cannot swallow or talk :-( He just lays there holding his fingers in his ears
He last ate on Tuesday lunch time. Since then we've been trying to give him sips of water to no avail :-(
His IV fluid has been upped to 60ml per hour to stop dehydration. They've added potassium to it, but no other nutrients.
Rafael has been in so much pain since Tuesday and is really miserable :-((
There have been a few "Drs" (and I use the term loosely!) come through, examine him and walk away!!
Finally today one of the Consultants was doing rounds and actually stopped to take the time to access Rafael. :-)
Sometimes Vincristine may cause jaw pain or difficulty in swallowing. This is because of the effect of vincristine on the cranial nerve, which runs down the side of the face. These effects are temporary and usually wear off gradually once treatment is finished."
He's taking Oxycodone and Panadol around the clock now, so hopefully the pain will ease over the next day or two :-(
No happiness today - just tears and misery :-((((
Rafael did lift a bit when his Daddy arrived to swap over :-))
Quotes of the day -
"I hate my life"
"Why did I have to have that chemo?'
"Why did I have to get cancer?"
"Why won't my cancer go away"
Lot's of tears - between all of us. There is no comforting him at the moment - he's miserable :-(( He hasn't eaten since yesterday.
Now he's holding his fingers in his ears all the time because they hurt too. We are getting frustrated at the onc team, because one of the junior Dr's comes around, has a quick look and says they'll be back later with a consultant, but they never come!! Rafael is in so much pain!!! He's on Oxycodone every 4 hours and Panadol as well.
He's very stressed today because he knows that he's going to have a tiny needle in his leg every day (which doesn't hurt) - but the stuff going in, GCSF, hurts like hell!!! He's already crying in anticipation of the injection :-((( It's very important as it helps his white blood cells to recover.
1st day back at school. My plan was for Rafael to stay 1/2 a day and then I'd take him in to RCH for blood tests and Dr appt.
It was effort just to get him there, he's already weak and tired :-(
This year he has transferred to the main campus and he's in the same class as his 2 best friends :-)
Once we were there, he wanted to go home :-( I convinced him to stay for the first 2 periods so that he could get to know the new children in his class. 2nd period was assembly and I popped in to the back and waited until it was finished and managed to get a quick pic of Lela and Rafa together :-)
I brought him home as we didn't need to be at RCH until 1pm, but he was very flat, so I took him in earlier, hoping the blood test would be done quicker and therefore get results quicker ;-)
Nope, as often happens at Day Oncology, we had to wait and wait :-( Would have been quicker to take him downstairs to pathology and get them to do it :-(
Rafael's temperature was borderline at 37.8C. he needed a dose of antibiotics, and platelet and blood transfusions.
Of course (as happens) as soon as the platelets started he spiked a 39C temp :-( Automatic inpatient stay.
His throat is so sore and he can't eat or drink. the Doxo is known to cause mucositis and I suspect it's kicking in :-(
As expected, Rafa's counts had dropped a lot :-(
He hasn't eaten or drunk (much) since yesterday morning and has already lost 1 kilo :(((
He did ask me to get him a hotdog for lunch and he ate half!!!
There was no room on the oncology ward so we are on the cardiac floor.
Had a big meeting at the school today to discuss Rafael's medical plan and the best way for him to be looked after when he's at school :-)
Rafael also managed to make it make it the his teams first soccer practice of the season!!!! He was very tired and Dom was there to make sure he didn't push himself too much (or get hurt!) Everyone was very happy to see him there :-)
Today is 2nd Day of the 2nd month - Neuroblastoma Awareness Day in Australia :-) We wore frangipanis in our hair to raise awareness :-)
My friend popped in to visit and bought some yummy food along too :-)
Gabriela was late back from Camp and Rafael was calling me as he wanted to go home N O W!!!!
All happy to be home and under one roof again :-)
After 5 nights in hospital, Rafael is really over the food ;-)
I put a "call out" on Facebook and our friend in QLD arrange for a pizza to be delivered and added in a couple of beers for Dom too :-)))
Gabriela went to a sports camp for 2 days. It works out well because it's just next to the hospital and I was able to drop her off early this morning and visit Rafael and tomorrow I will pick her up just as Rafael is due to be discharged ;-)
Rafael is not having any nausea with these drugs. However, they are keeping him on 6 holy meds as well as steroids.