Yeah, 2008 is almost over! What a year :-((
Rafael has had a great week at home. We went to the hospital on Monday morning for blood tests, a dressing change and Dr appointment. Everything took a long time, but nothing held us there :-)
Rafael is booked to start his next cycle of chemotherapy on Monday 5th January. It is sort of an extra round, before his “big one”. After that, when he is recovered, he will have the full gamut of tests done again: echocardiogram, kidney function, bone scan, CT scan, bone marrow aspirate and an MIBG scan. Not sure how many of these they can do on a single day, so it will mean lot’s of trips to the hospital for us and I am preparing myself already for the tantrums to follow :-)
Depending on the results, Rafael’s treatment will go one of two ways – either to MIBG radiation treatment or into stem cell transplant. We won’t know until the end of January. I am due back at work on 12th February and not sure where I’ll be?? I will probably have to take leave without pay once we get a clearer idea.
We had a lovely Brazilian bbq here on Sunday with a few friends, Rafael had a great time having other children’s company and we also had a great time, being able to relax and socialise :-)
Gabriela and Rafael received a nice surprise from us yesterday. Normally Rafael cannot go to a cinema due to his low blood counts etc. However, Domingos and I had 4 tickets (birthday gifts) to Gold Class that we had not used. We were thinking of going on our own to see whatever was on, but were not too excited about that idea. Then we decided to use the 4 tickets for all of us and went to see Madagascar
Tonight the fireworks are on, so we might go by train?? But it’s raining at the moment :-(
Rafael did not need the nasal tube put in on Monday. He is eating pretty well at the moment and the Dr agreed to let him go along for a bit longer. He was 12.9 kilos on Monday :-) Mind you, he still doesn’t eat much, but at least he is asking for food – fruit toast and potato chips are his latest cravings. He even ate a whole ice cream yesterday and Gabriela could not finish the same size :-)
HAPPY NEW YEAR to all and may 2009 bring only good news and all that we (and you) wish for.
Love and best wishes, Domingos, Tash, Gabriela e RAFAEL xxx
26th December 2008
MERRY CHRISTMAS
Rafael made it home in time for Christmas – yeah!! The hospital went to a lot of effort to get as many children out as they could, even if it was for just part of the day.
We had everything set to leave by 2 pm on Christmas Eve. The Dr came and said that she was still concerned about him having no neutrophils. Therefore, instead of having a nurse come to our house every day to give IV antibiotics, it was decided that he would just have oral ones and if for whatever reason he develops a fever, it would not be so “masked”.
The nurses pushed forward Rafael’s treatment and we were out of there just after 12 :-))
We had a most wonderful surprise on Christmas Eve. Our dearest friend Simone called the day before to say that she was making Christmas dinner for her brother and their family and she would make a bit extra for us to have as she knew I didn’t have time to prepare anything. Well – a bit extra??? Oh, meu Deus – she bought around so much food, you cannot imagine. Pork, turkey, ham, salads, rice, bacalhau, pudim, rabanada, farofa; all of the traditional Brasilian Christmas dishes. She even bought paper plates and a Christmas table cloth. How beautiful and kind and giving is that??? Simone, mil beijos (de novo) xxx
Of course, we promptly sat down and ate as much of the wonderful food as we could, it was divine :-)
I woke up early Christmas day (as usual) and noticed that Santa had been as he had eaten a cookie, drank some milk and the reindeers had eaten a carrot. He had also left LOT ’s of presents under our tree!
While Domingos was in the shower, Pipoca (our dog) came into our room. We were a bit puzzled as to how he got in? When I walked into the bedroom, I realised that Rafael had opened the door and gone downstairs. I ran and caught up with him at the bottom of the stairs just in time to hear his exclamations of joy and amazement – Santa has been! Look at all the presents! “Can I open mine now”?
We convinced him to let us wake up Lela first and to get their Christmas t-shirts on :-) The next hour was a blur of present unwrapping, more exclamations and demands for “open this”!
The rest of our Christmas day was very relaxing and totally stress free. Domingos got to have a big chat with all of his family on Skype, I didn’t have to cook anything as we still had so much food left from Simone and the children played all day with their toys :-)
Can you believe this? – Dr Peter Downie even called in the middle of Christmas day to see how Rafa was doing? Amazing!
Rafael loved a Thomas track he received and a hot wheels track. Gabriela loved her scooter and hasn’t stopped riding it around the house! We took them for a late afternoon ride on their scooters, but Rafael didn’t like it much, so I came home with him while Gabriela kept riding with Daddy and Nanna. Gabriela was very sweet, she received a Hannah Montana doll and promptly gave it to Rafael “because he loves her”. xxx
One of the conditions for Rafael to leave hospital was that he came back in on Friday for blood tests and for the Fellow to see him and physically check him. He already had lots of bruises, so I guessed he would need a platelet transfusion. The hospital was very quite as a lot is closed. The day was long, but passed quietly and peacefully with all of us (Dom, Lela, Rafa & I) having the whole of day oncology to ourselves while Rafael had a 2 hour platelet transfusion. His count was very low, just 10 :-( He also received a belated Christmas present (not that he cared!) – He has neutrophils!!!! 1.4 – yeah!!!
Domingos has the whole of next week off work and we are looking forward to relaxing as much as possible and doing as little as possible! We have been at this for 6 months solid now. It’s no wonder we both feel so tired!!!
23rd December 2008
continued
Gabriela had a lovely birthday and was made to feel special by everyone at the hospital. The best present wasn’t to be though, Rafael is still in hospital. All is set for him to come home tomorrow, the hospital has organised a nurse to come o our house every day to give IV antibiotics.
Actually, being in hospital at this time of the year doesn’t seem so bad, as there is so much happening, lot’s of gifts and festive treats. As well as personalities “popping” in.
We opened Gabriela’s gifts with her as soon as she arrived with Mingo; Rafael wanted to tear off all the paper. Soon after, Rafael’s 2 favourite Captain Starlight’s came to sing Happy Birthday and gave her a small gift. It was just go go go after that, ALL day!!
Rafael was disconnected from his tubes and pole and was free to run amuck all day :-)) And run he did, so much that he kept getting into trouble from the front desk - LOL
Millsy (Rob Mills) from Australian Idol came to the ward to sing songs and carols and afterwards, came to Rafael’s room to sing 2 songs. Rudolph the Red Nose Reindeer for Rafa and Happy Birthday to Lela. He was very good. I will post the videos and photos soon. He wanted to steal Rafael's t-shirt, he loved it! "Ladies Man" - Rafael sure is, he is gathering such a harem at the hospital, but still has his heart set on marrying Hannah Montana ...
Then Micka from Challenge came to give Gabriela and Rafa a present each and since it was Lela’s birthday, she got 2!
Well, Rafael’s was an air powered rocket launcher – what fun and hysterics were had with that! We decided that the room was far too small and went out into the corridor to launch it. So much fun was had, staff had to avoid the hall for fear of being hit (it’s quite soft) and other children came out to see what all the laughter was about. At some points, Rafael was literally on the ground in hysterics, especially if it had hit him. Lot ’s of fun.
Everyone agreed that Rafael is way too well to be in hospital :-( Still no neutrophils :-( I asked if they could take his batteries out to give me a rest!
In between all of that we also managed to make our gingerbread house :-)
Gabriela was to so tired that she even fell asleep in the car on the way home xxx
Keep forgetting to write this - at last weigh in Rafael was down to 12.4 kilos only!!! He is having a nasal gastric tube put back next Monday so we can try to fatten him up as much as possible before his high dose round of chemo which will be around the beginning of February.
23rd December 2008
What could be worse than spending your birthday in hospital??? Having to spend your birthday at a hospital because your brother is still there :-(
Our darling Gabriela, we hope today, your 6th birthday is fun and memorable for you.
You have been an amazing big sister to Rafael throughout this ordeal and a loving and extremely understanding daughter.
We all love you very much XXXXXXXXXXXXXXX HAPPY BIRTHDAY!!!!!
There are a few things planned today at the hospital that you should enjoy, the Captain Starlight's know it's your birthday and so does Micka. Rafael has made a surprise for you and we can all finally put together the gingerbread house for Christmas.
If we are lucky, we might even get to bring Rafael home on your birthday :-)))
19th December 2008
Rafael has been back in hospital with an infection since Wednesday :-( Better this week than next!
He is on IV antibiotics every 8 hours and has had a blood and platelet transfusion. They have found no reason for the infection as nothing “grew” in the lab. Therefore, he can come home soon. However, as he is 10 – 12 days post chemotherapy, he has no white blood cells and no neutrophils. The hospital has a policy that if you an inpatient at that time, you cannot go home until the neutrophils start to rise. He has a needle in his leg each day to help with that.
He has been ok, asking a few times when he can go home. But he understands now that he can only go home when the Dr says, so now after any Dr comes to his room, he asks “did they say I can go home?”
The Starlight Foundation had their Xmas party on Thursday. Domingos bought Gabriela in early so that she could enjoy the day in the starlight room. It was open all day and they had lots of activities and a band. Rafa and I could watch some of it on TV. They gave out present to all of the siblings as well as every patient in the hospital.
Rafael was most pleased that his girlfriend (read – tall, blonde, young Captain Starlight) was able to bring his gift to his room :-) He kept asking all day “when are the Starlight’s going to bring me a present?” Cheeky boy!
16th December 2008
Yes, yes …. I know – “About time!” I’m not working for now and Domingos is working full time and I just can’t find time to update as often as I’d like :-( Sometimes it’s all a bit “too hard” Sorry to everyone who relies on this blog for news. Please do feel free to call us if you want to x
Rafael was released from hospital last Thursday as planned. However, as usual, everything didn’t go “to plan”!! He threw one of his famous tantrums beforehand and it took a long time before everything was ready to go. I am getting a bit “numb” to it all – does that sound fair? I just had to walk out of the procedure room as he just loses it with me and there is only so much biting, hitting, scratching and hair pulling I can take! As usual, he calms down ok and all is “normal” again.
We all had a great Saturday :-) Thanks to Challenge (once again), I went to the Yarra Valley
We had another Christmas party that night with one of Gabriela’s school friends’ families. Thankfully Sunday was free so that we could “relax” a bit.
Today we had 2 appointments for hearing, 1 at the hospital with an ENT Dr
I am planning to write 2 other blogs when I have time, 1 is for links to some of our dearest friends sites and the other is for people and friends who are helping us get through this VERY difficult time. Please know that you are all appreciated and your help is invaluable to us xxx
Due to Rafael having such a long gap between treatments, his hair, eyebrows and eyelashes are frowning back. OMG – he is even more heartbreakingly gorgeous!!!! If that was possible??
Gabriela’s party was a great success J Simone did an absolutely magnificent job with the decorations, cake table and little tables for all the children. Mil beijos Simone xxx We had 25 children plus parents and all had fun. Thank you also to Fairy Penelope for her hard work in keeping them all enthused :-) I have already put some pictures up, as well as the 2 Xmas parties and Rafael riding in the police car at Cops & Kids.
I let the children sleep in a bit before heading off to the hospital for Rafael’s chemotherapy. As he would only be a day patient, I didn’t pack much, but thankfully, did throw a few extras in the car. When we arrived, there was a lot of confusion (surprise!) as the pharmacy was not able to produce chemotherapy that day as a machine had broken and from what the nurses knew, Rafael was having a different chemotherapy and would now be an inpatient!!! What???
We met Sonya, our nurse coordinator who briefly told us that Peter Downie was supposed to call us in the morning to let us know what was going on and that she had arranged an appointment for us to see him.
Before that, we had a meeting with the head of oncology, Prof Ashley, to discuss our complaints of the handling of Rafael when he went into renal failure. Blah, blah, blah. It’s all bureaucratic and I felt he was just patronising us :-(
Peter was waiting for us with more disconcerting news – the GFR (kidney function) results from last week showed that Rafael’s kidneys are functioning even less and therefore he cannot have any more platinum based chemotherapy. That meant that his drugs for this round have changed and as they can affect his bladder, he needs to be an inpatient so that they can keep flushing fluids through his body. OK, fair enough, but hey! we don’t have any clothes for us and little for him :-((
Peter also said that the MIGB scan from last week showed that lot’s of the tumour is not “lit up” (possibly dead) and therefore the use of MIBG therapy might not be an option, as it needs to find active disease to work.
Rafael and Gabriela spent the day in day oncology having a blast :-)) Domingos was going home after work to pack some things and then head in later. We waited and waited all afternoon for them to start his chemo as the pharmacy was able to out source the required drugs. Eventually a nurse told me that his electrolyte test that morning showed that his kidneys were “not right” and they were concerned that he hadn’t been peeing enough after they had started to run a flush through his lines.
Day oncology finally “kicked us out” about 5pm as our room was ready and they wanted to close shop :-(( The children had so much fun there, drawing, playing games etc. Eventually, at 6 pm , Rachel, the fellow came to tell us that they only wanted to run fluids overnight, to flush Rafael’s kidneys, before starting the chemotherapy. She would check his blood tests again in the morning and then consult with Peter as to whether they might need to lower the dose as his kidneys are too fragile.
Domingos arrived at 8:30 and by the time Gabriela and I got home it was after 9 pm – whew, what a marathon day! He stayed in with Rafael and worked from the hospital. Apparently Rafael didn’t wake up until 11:15 am :-)) Gabriela didn’t get up much earlier either :-) The after effects of a big weekend!
Rachel told Domingos that the overnight flush had worked well and that his creatinine and urea had come down substantially, although not to normal levels yet. But, because it was a very good response, they'll go ahead with the normal levels of chemo today and tomorrow.
Rafael went downhill a bit in the afternoon :-( His temperature went up and he as very tired. He didn’t have dinner (2 minute noodles) until after 8:30 pm :-(
6th December 2008
We’ve had a very busy week, not much time to update here.
We had to be at the hospital early on Monday so that Rafael could have a cannula inserted in a vein on his hand, before they could start the different tests. It was ok; we had applied “Angel cream” at home before leaving. It took a while for the technician to get it in, then it didn’t work and they had to swap to his other hand. His veins are not that good anymore :-( As much as he complained, he was very good, just hated having his hand held so tight.
We spent the morning in day oncology, which he really enjoys. Lisa (the receptionist) is his favourite person in the hospital. She is wonderful with the children J Rafael always gets to help her do some work and she usually prints him some pictures to colour in. Rafael spent some time in the play room as well. His psychologist spent lots of time with him as well, doing drawings, paintings and talking. Apparently, he talks a lot to her about food! On that note, he is still maintaining his weight, is addicted to 2 minute noodles at the moment and doesn’t eat much else.
He had a bone scan in the afternoon and was very good, kept still as can be and laid there watching a Thomas movie :-)
On Tuesday he went to kindy again :-) He had so much fun, when Gabriela and I went to pick him up we couldn’t get him to come home. In the end, after many tears and much struggling – we left him there! Nicky’s dad, Xande, bought him home about 6 pm and he was happy as can be.
Domingos had the pleasure of taking Rafael in on Wednesday for the start of his MIBG scan. He needed an injection in the morning, and then a few hours later he would have a short scan. Again, Rafael was able to play all day in day oncology.
Thursday was Gabriela’s last day of school for the year, so we all drove her to school to say goodbye to her teacher and Rafael wanted to make sure that she knew he also barracks for the Western Bulldogs :-))) Julie was happy to hear that as she has already brain washed Gabriela this year!
The scan went well, took about 45 minutes for a full body scan, a bit longer than the Thomas movie – the same one he has watched each day this week :-) After that, it was just go home – right? Well, easier said than done!! I have no idea what actually happened, I think either Rafael wanted me to carry him or not carry him?? Anyway, as we were leaving the front door of the hospital to walk to our car which was directly across the street, he started an almighty tantrum. He didn’t want to leave, was crying, if I picked him up he screamed and hit me. I left him for a while as he was hiding around a corner. When I thought he was calmer, I tried to get him to cross the road. However, Flemington Rd has 4 sets of pedestrian lights to cross as well as 2 trams tracks – what a nightmare to navigate with a screaming, biting, scratching, hitting 4 year old! Arrrghhhh! I thought if I just persist and get across the road quickly as possible, we could deal with it on the other side. But he was fighting against me so much that I had to put him down. People were offering help – yeah, what can you do? People were staring. Cars even had to stop because I couldn’t make the lights in time :-( Ai carumba!
Eventually we made it and Rafael ran off down the road in the opposite direction. He found a little wall to sit on and I could see him. I gave him a good 20 minutes, for both of us to calm down, before going over for a chat. He was calmer and I was able to get him to walk to the car and that was it, drama over!
That night he had the pleasure of Auntie Sonia and Uncle Jeff looking after him while we all went into the city to the Town Hall for Gabriela’s speech night. It was a very nice evening, not as “boring” as we had expected. We thought Gabriela would fall asleep as it didn’t finish much before 10 pm , but she was still awake and chatting all the way home. She now has nearly 2 months break, and come to the hospital at times to keep us company, or go to the Starlight Room.
Friday was spent trying to get everything ready for Gabriela’s birthday party on Sunday. Our dear friend Simone has set up the house with a princess theme and it looks fantastic :-)
Today we went to the Challenge annual Christmas party for children with cancer. We all had such a fun day, it was awesome. There were heaps of rides, Harley Davidson rides, petting zoo, plenty of food and too much fairy floss!! The children’s favourite parts were the Ferris wheel and the dodgems cars, both of these we had to do twice. After such a long day, the only person to fall asleep in the car on the way home was Mummy, and I was driving! I had to pull over and swap with Mingo as I could feel my eyes getting heavy.
All is set for the party tomorrow, Nick is coming early and Rafael has already chosen their seats!
I’ll put pics of the weekend up as soon as I have time (maybe the middle of next year?) Rafael starts his next round of chemotherapy on Monday.
xxx
Happy New Year to you all (Domingos, Tash, Gabriela e RAFAEL)!!!
ReplyDeleteI am excited to see you all in October during Master Games. Looking foward to give a big hug in Rafael and Gabriela. Thinking of you all the time. God Bless you All. Take Care. Love always. Ken and Valeria