Where did July go???
Rafael is still doing very well at home. Managing to eat things like Coco Pops for dinner and sausage rolls for breakfast!!
My Mum's shoulder break is much worse than it first appeared. She is scheduled to have surgery this Saturday. They will try to put a plate in, but if they can't, they'll need to replace her shoulder :-(((((
Rafael's new addiction is playing games on the computer. Thanks to ABC and BBC there are some great websites for him to use.
Ricardo Ken - I love the photo you used xxx
All quiet and happy here :-) It’s a good thing Rafael is on a high-fat diet – all he wants to eat are cheeseburgers and hotdogs!!!
We went to the hospital today to have his lines flushed and some blood taken. Did not hear back from the Drs.
Rafael has managed to have a sleep in both days J I think we need to move Gabriela back to her room as those 2 just chat and chat and play and play and don’t go to sleep until late! Then Gabriela is grumpy in the mornings…
xxx
Some bad news and some good news…
Can you believe this …? Mum fell over last night washing her floor and has broken her shoulder!!! She may need surgery this week.
We have often said how lucky we were to move to Sanctuary Lakes
The nurse called tonight to say that Rafa’s blood cell count is good and going up!!! J J J
His platelets are low and he “might” need a transfusion this week, but all is good.
Before we left the hospital this morning, he wanted a McDonald’s cheeseburger. They still had the breakfast menu on and I convinced him to try an egg McMuffin. He loved it. It took about 45 minutes for him to eat 90% J
At the moment, it looks like all is ok for Rafael to start his next round of chemo next Monday. We will see Dr Heath again this Friday.
Love to all and thank you again for you messages, calls, emergency hospital dashes etc xxx
Wow! Our first weekend at home since the middle of June J
All is well; Rafa is doing so well at home and having so much fun with Gabriela and us J
The nurse came yesterday to change the insulflon in his thigh (where Domingos gives his daily injections). He didn’t throw as big a tantrum as the day before!
I had to go into the hospital to pick up some more injections for him (1+ hour round trip!)
Our dear friend Sonia came yesterday morning to cut his hair as short as possible as it is falling out at an amazing rate. Soon, when it is almost gone, Domingos will cut his hair too J
We have had a great weekend, just being a family. Last night we bought take away pizza and listened to music and fun being silly and dancing around.
Today our friend Peta cooked a delicious lamb roast for our lunch. Unfortunately, all Rafa wanted was Pizza. But since he is on a “high fat” diet – that’s cool.
Love to you all, we are off to the hospital in the morning for more blood tests, who knows if we will make it home ;-)
xxx
A good day at home J
Mingo was able to start working from home thanks to his company (ASIC) and his bosses.
I was even able to duck out and go to the Dr myself and the supermarket J
Rafael was desperate to have Fruit Loops for breakfast, but of course, we didn’t have any (I did remember to buy them later). After eating 1 tiny pancake, he just wanted to lie on the sofa. He slept from about 11 – 2.
We had to wake him up as the nurse was coming to take blood. Oh dear, another fine tantrum was thrown!! Thankfully Mingo was here because he had to hold Rafa’s legs while I held his arms. The nurse had to give up on the first try and that meant he had to have another finger pricked. He was trying to bite me and scratch me and just screaming. In the end, I was crying because it is so hard to see how he reacts to theses “little” things and how much it upsets him.
Brave little guy J
Gabriela arrived just after 4 and he was so happy. They sat watching a movie and then they asked me for hot dogs. Rafael didn’t want sauce; he wanted Nutella (a chocolate spread)!! I could not imagine at all why he would ask for that, but so be it. When I asked him where he wanted me to put it, he said “no, that’s the chocolate for toast! I want the other one, in the fridge”. We worked out that he was actually talking about mayonnaise …. Makes sense now J He didn’t really eat much, just wanted to lick the sauce.
I forgot to tell you that yesterday I realised Rafael’s hair is starting to fall out L L L Now it is falling a lot and Auntie Sonia is coming to cut his hair short “like Daddy’s” today.
Gabriela is great medicine for Rafael. She is so full of energy and wanting to play. They played a favourite game which is to turn the music up loud and dance around. Yes, our little guy was up dancing last night J
We have a nurse coming again today; hopefully it won’t be so bad. In the end, the blood they took yesterday has clotted and was no good for a full blood count. Therefore, I have to take Rafael to the hospital on Monday morning to have it done – that should be fun – NOT!!
Thanks again for the calls and messages of support, from all over the world. Have a good weekend
xxx
Rafael is still home and doing well J
It is hard in the mornings as we are all sleeping in the same room and we have to wake Gabriela up by 7:15 to get ready for school. Usually, between Domingos and Gabriela they manage to wake Rafa up with all their noise, so no sleep ins for the little guy L
We have managed to feed him overnight via the nasal tube and that is going well.
Yesterday morning he kept asking for the “cow cheese”, which are Kraft cheese sticks. Of course, we had every other type here, but not that one. Lucky Nanna lives close by was able to go to the shop, buy some and bring them here. When I told him Nanna had arrived with the cheese, a he gave a huge smile. He ate 2 straight away.
A nurse came to do a finger prick blood test and as usual, he carried on, but in the end it wasn’t too bad.
Rafael spent most of the day sitting up on the sofa watching movies; he is still not trying to walk much. His hip seems fine now; I think he just doesn’t have the energy and strength at the moment.
Rafael is so much happier at home (as you can imagine). Today he was talking a lot and asking for food and even sat at the table to do a painting of Pluto from Tia Silvia J
Poor Gabriela, he even asked for her dinner!! She was almost finished and there was only a little bit left. Thanks Gabriela for letting Rafa have the rest xxx
The Dr called later and they are sending another nurse out today to take more blood, this time for a full blood count. At the moment his white blood cell count in nearly zero. It needs to start going up before he can start his next round of chemo. We give him an injection each day called GCSF which will help the blood count go up, once it starts increasing. The Dr said that he might need to continue it after today (last dose due) and the blood test will tell us.
Otherwise his potassium and phosphate were good yesterday, but magnesium is still down. We will increase the dose from home.
We increased his feed rate last night to 40ml per hour, with the aim of getting it up to 60ml p/h.
Finally managed to get out of the hospital at 1:30 pm yesterday J J
Getting everything home and organised is another story … so much stuff!!
They are still worried about his electrolytes and a nurse is coming today to do a blood test at home.
At least with the tube in now, we can give him his magnesium orally.
He slept for about 3 hours when we got home, but woke up happy and asking for sausages. Do you think I had any?? Managed to convince him to go for sausage rolls instead. He ate 2 (party size) then asked for a hot dog sausage, but only took a few bites. He drank lots of water and a bit of cup cake.
We need to run his feeds for 12 hours overnight and we aimed for 8pm – 8 am last night. Connecting everything up is a bit confusing (first time). I’m sure we’ll get the hang of it.
Rafael so far, is not too fussed about the tube and hasn’t tried to pull it J
Just after we started the feed, we also gave him his medicines. Lesson learned – don’t give all one after the other – because if he vomits, it’s all gone. Poor darling lost all his dinner L
The problem now seems to be the potassium. It dissolves and becomes fizzy. As soon as it is in, Rafael vomits. We are meant to give it 4 times a day!!!
Mingo and I both managed to duck out for an hour to attend Gabriela’s parent/teacher night. Our little princess is doing very well at school and is friends with anyone and will play any game with whoever asks. She has a few areas to pick up in, but hey, she’s only 5!!!
After a little vomit this morning, Rafael has kept his porridge down and is much more talkative and relaxed. I’m about to get the phosphate out L L
Once again, thank you all for your messages etc
Rafael finally had the tube placed at 6pm :-)
He is staying in hospital tonight so that the nurses can start the feeds and also “since he’s there” they will top up his magnesium, potassium and phosphates!!!
Tomorrow he will be home, and depending on when he gets and infection – he is home!!!
Placing the tube was not as stressful as expected. They gave him a drug first that doesn’t real “drug” him, but makes him forget what happened. He was a little “woozy” and the nurses managed to get the tube down without too much of a fight. Rafael was more curious to know what they were doing and why!!
Rafael came home on Sunday afternoon. The Dr agreed that he needs a nasal gastric tube, but it would have to be done on Monday. His magnesium was low and he needed a 4 hour wait while that was run through ... finally they arrived home about 3pm .
Rafael is so thin and lethargic; he can't keep any food down and is even refusing to take his medicines
They told us to be back at the hospital at 9:30 am Monday to see another Dr and then have the tube inserted. The traffic was a nightmare and I was running late. When we arrived, they took some blood and then we just waited and waited ... grr. Finally saw the Dr after 11 am and that was really a waste of time as he didn't have much to say about anything, the blood test results weren't back and he agreed about the tube.
We went back to day oncology to wait for the dietician and then the nurse to try to insert the tube (I was dreading that). The dietician came and explained the pump and how it all works and the tubes and the feeds and the litmus test ... and ... and ... there is so much to take in and learn. I had to go downstairs to pick up the formula and our kit to take home, then they'd do the tube and we'd be off.
Not so fast!! Rafael's blood test showed his magnesium and potassium levels were critical and that meant another 4 hours while it was run through. However, the Dr that morning had told me that his levels should be fine as he'd already had it on Sunday.
Rafael was asleep and the nurse came to connect his lines for the infusion. Oh my gosh – what a massive tantrum Rafael threw!!! We have learnt that he hates to be “surprised” or woken up for procedures, but this was a pain free connecting of tubes. He went crazy and tried to rip the lines out. 2 of us were trying to hold him down and he was kicking and hitting us. In the end, they had to wrap his hands in bandages to try to stop him. He was too smart though and managed to get one finger out and that enabled him to unwrap both hands!!!
He calmed down a little, but I just lost it. It is so hard to watch Rafael going through all this stuff and to see how “over it” he already is.
I called Dom and he had to come in from work and he talked to the nurse.
Rafael kept vomiting all day and the nurses could see that as soon as he had 1 little sip of anything, it came straight back up. They were concerned about putting the tube in before his nausea had been controlled. Therefore, they decided to do it today instead.
After a whole day at the hospital taking magnesium, potassium and anti nausea medicine through the drip, it seems to be that they've reached the desired effect. Towards the end of the afternoon, he was able to eat and drink and keep everything in. Consequently, he was happy, smiley and cheeky trying to punch Daddy in the face just for fun.
By that time, Natasha was already home having a break after a stressful day at the hospital. Then Daddy took Rafael home. On the way, Rafael asked whether he could eat hot dog for dinner. We were surprised to hear that, in fact, he meant it. We made him a hot dog and he ate it all. And once again, it stayed in. Both Natasha and I were (yes, the writer has changed at this point) happy just looking at him eating. That was the best feeling we had in days!!!
The only problem now is that Rafael has made up his mind: “I'm not taking medicines anymore”!! And, trust us, he means it. It will be a struggle to get him to take any medicine orally from now on. We'll have to disguise any medicine or spend hours trying to convince him to take them. It will be challenging times ahead.
After a hard day, he had a good night sleep at home, not waking up once. That was great!!! This morning he ate a bit of breakfast, but not enough. However, once again, the food stayed in. YEAHHH!!
We're taking him to hospital once again today. There is a good chance that he'll have to stay overnight because it is likely they'll put the nasal-gastro tube in. We'll let you what it will be like tomorrow, as I cannot imagine young Rafa taking that peacefully :)))
Take care you all.
Rafael is not home anymore :-( He was home for 1 day, 2 nights
As scheduled we went into hospital at 8am for his blood transfusion. They didn’t start until 10am :-( It went well, Rafael's colour picked up almost instantly :-)
They did a blood test first and it showed that his potassium levels and kidney function were bad, and he has lost so much weight, he would need to stay. OK --- more “good”news”
However, Rafael and I stayed in day oncology until 6 pm . As he was an out patient, it was expected that I had food for him. Yet he needed to stay so that he could put on weight. Every time he tried to eat, he vomited. By that time, I “lost it” and went to complain to the nurse “where is his bed, where is food for him”. She said “Oh, there is food in the fridge if he wants?” Well HELLO, it would be nice if somebody TOLD us that!!
Close to 8pm we were taken to a room. Rafael was hungry, but whatever I gave him, he threw up. They weighed him again = 11.6 kg :-( He was put on a drip to supply nutrients
The night passed, until 01:30 when I was woken by a nurse saying we had to take Rafael’s clothes off so that he could be weighed. I was in a daze, so tired and not comprehending. I managed to get his pants off and finally woke up asking why??? “The Dr was just here, didn’t he talk to you?” “No, I was asleep” “What type of Dr?, Who is he?”
The nurse went to get him and he explained that they needed a base line of Rafael’s weight – fair enough! But I complained that they had weighed him at 9 pm so why did they need it so soon?
“Oh”, he replied, that was not recorded, ok then, we don’t need to weigh him again until morning” ….. thanks for another nights interrupted sleep!!!
I understood that they would be giving him anti nausea medicine via his line during the night. In the morning, I found that was not the case, they had just given a one-off dose the previous evening. They weighed him again (11.3kg) and took some more blood. That test came back showing that his electrolytes were still “off”, so the IV was re-adjusted.
Rafael really wanted vegemite on toast for breakfast. He managed to keep that, and some strawberry milk, down until he took his medicine, then it all came back up. Then he wanted more :-)
After that, he was placed on the medicine 6 hourly through his line and didn't eat another thing all day. By the time Domingos came into the hospital (4pm ), I was beside myself with trying to get Rafael to eat anything. The Dr said he needs to eat bananas for his potassium, but I couldn't get him to take one little bite. He complained that the medicine hurt his tummy.
He was due to have another blood test at 6pm and a Dr was to review it afterwards. We told the nurse not to give him the anti nausea medicine again until we see a Dr.
We have been moved back to ward 4 North, which is nice, as we already know most of the nurses and Rafael is used to them. He is just annoyed that they can't find a specific Dora DVD that he watched over and over when he was first in hospital.
I spoke to Domingos around 8:30pm and the Dr had not been and was going to hand over to someone else. He was really stressed because Rafael is not eating still, although he had managed to eat 2 pao de qeijo's Tia Rosana made :-)
They mentioned on Friday that they might need to put a tube down his nose to give him feeds. By now, we are just saying – DO IT!! What are they waiting for? Truly – don't get sick on a weekend because nothing happens at that hospital. They just pass things on and on until it's Monday!! I mentioned to Domingos that he should try to talk to the nurse in charge on the Oncology ward as they are the person we are meant to call if we are home and Rafael gets sick.
Therefore, we are already in hospital, but Domingos had to go up there to speak to someone to get some answers!!! She checked the blood tests and said that they had improved. She also agreed about the tube. She will put Rafael's name at the top of the list for the Dr in the morning. Maybe he can come home if they do it on Sunday??
The nurse called at 7am to say he was coming at 8 am . Lucky I was already up!
Rafael tried to drink some yoghurt, but couldn't keep it down.
Then he asked for weetbix and he ate about ½ with lots of honey :-) (He managed to keep that down for 1 hour!)
He even swallowed his antibiotics without complaint and stated that “it's his favourite”
The nurse came and Rafael was fine, didn't complain.
He just wants to lie on the sofa and watch TV, he still won't walk much, but he is very weak :-(
Rafael had a lovely surprise today ... a Fire Truck came to visit him...
He wanted to have pizza for lunch so we took him to our usual hang out – the Waterstone Cafe. Chris, the chef, called his friends form the Point Cook CFA and asked them if they were free to bring the truck down.
Rafael was still very lethargic, but did enjoy it a lot. He got a bit of a shock when they put the siren on!!
He was able to sit in the front seat and was allowed to beep the horn. I'll post some photos for sure. (Thanks guys) Also, they gave him a special CFA teddy bear that Rafael promptly named Adrian
He really tried to keep the pizza down, but no luck.
Back home, all he wanted was for Nanna to sit on the sofa with him and he wouldn't let her leave – too cute.
I just wrote a long post and lost it:-(
Rafael is home and I will update tomorrow xxx
Rafael nearly didn't make it home.
He was scheduled to have the second part of the miBG scan at 12. In the morning, the technician (Duncan) came to see us saying that he had been thinking about how Rafael had reacted that day and he couldn't get to sleep worrying that Rafael wouldn't be able to keep still for the required 45 minutes.
They decided that Rafael would need a general anaesthetic and that probably meant he wouldn't be able to go home at night. It was booked for 1:30 pm
Rafael was very calm in his bed, a bit tired and I talked to him a lot about the scan and how easy it was and that we could go home. He said he would do it.
We called Duncan 11:30 . Rafael was fine; he laid still for most of the scan, quietly watching a Thomas DVD. Therefore, no anaesthetic needed = GO HOME :-)
The rest of the afternoon was spent disconnecting tubes, flushing lines, meeting the staff from other areas and having the pharmacist explain all the different medicines we needed to bring home. Mummy had to use a mini shopping trolley to get all of our things to the car!
They injected a “thingy” under the skin in Rafael's thigh as he needs to have a special drug for the next 10 days. A nurse will come to our house each day to give it. This thing just means that he doesn't need a needle each time, the needle stays in his thigh and the nurse just connects the syringe each time.
Domingos left work a bit early to meet us so that we could all go home together. We were literally just about to leave when the Dr came in and said Rafael's red cell count had gone below the level required needing a blood transfusion. It will hold you up a bit, but you can still go home tonight.
We were stunned. We asked the nurse how long a “bit” is and she replied 4 hours !!!
It really upset us. We know to expect setbacks and unexpected changes, but psychologically, we weren't prepared to not go home, we had psyched ourselves all day for it.
The nurse asked the head nurse if anything could be done. Not long after, the head nurse came in and said “this is not on, you NEED to go home, and you have been here 4 weeks already”
She explained that if Rafael's low red blood count was life threatening, we could not leave. But as his was not, we could go home and come back on Friday morning to day oncology :-)))
They took some blood from Rafael to cross match it and the blood will be waiting for us at 8 am on Friday :-) Not sure how we will wake up that early ;-)
Gabriela and Nanna were waiting for us to arrive. Rafael is very lethargic and weak. They weighed him before we left and I got such a shock to see he is now 12.4 kg :-( He's lost 1.4 kg in 4 weeks. Poor little guy
Rafael still did not want to eat anything (day 4)
I convinced him to have a shallow bath and he seemed to enjoy that.
We moved Gabriela and Rafael's beds into our room and they both fell asleep side-by- side ... too cute.
xxx
Hello all,
Thank you so much for posting messages and sending us emails of support - Rafael loves to here about HIS site :-))
Today, he was much better and back in "fine form"
Domingos went back to work this morning and had to leave Rafael alone until I got there after dropping Gabriela at school.
When I got there, Rafael told me (with a sad face) "Daddy had to leave" :-(((
He had his miBG scan today (which is over 2 days). First they injected a radiation trace and we had to go back later for the "picture" (scan)
However, when the time came, he was asleep and I tried to pick him up without waking him - didn't work. So, he was crying and angry throughout the whole 5 minute scan, trying to hit me, hit the technician and really hitting the machine (probably a multi million dollar one) - go RAFA
He had his last dose of round 1 chemo today. He still hasn't eaten anything and is vomiting whatever in his tummy, but he was chatting away and even managed to go to the play room and do some art work :-))
The good news is that all is set for him to come home tomorrow - for how long?? That is the magic question? They assure us that he will get an infection soon and need to go back to hospital.
But gee, if we can even get 1 night as a family together after 4 weeks, it will be wonderful.
Love to all
Tash, Domingos, Gabriela e RAFAEL
Once again, the chemo has really knocked Rafael :-((
He won't eat; he won't walk.... just wants to sleep. He has been vomiting, but as there is no food, not much is coming up.
Let's hope that these nasty chemicals are doing their job!!!
Thank you for the comments, gifts, food, good thought, assistance etc that we have been receiving - it is over whelming and much appreciated
Xxx
The effect of chemo has started to hit Rafael today. He was very lethargic. I managed to take him for a ride up and down the hall in a wheelchair.
By midday he was already having a nap. He slept for 2 hours.
Domingos called me and said he was asleep again at 7 pm . He ha eaten nothing since lunch yesterday :-(
Love to all and THANK YOU
Xxx
ps: I have posted some songs xxx
Young Rafa started chemo therapy yesterday. First day everything seems to have gone well. To him it all sounds the same: another drip coming through. At least he got his both arms free as the drip is coming through the Hickman's Line. I'm still not sure if he realised he got it there yet. I think he was so over the whole thing on his arms that anything else is irrelevant.
He's desperately to come home. We told him that soon he'll be coming home. IN fact, if everything goes well, he will be coming home on Wednesday for a few days this time. However, we needed to warn him as well that he'll have to go back to hospital several times during his treatment. He is so over hospital. I think that when he grows up he'll have something against hospital and doctors (nurses included) :)))
The one thing that can stop him from coming home this week is the infection on his blood. Yesterday they did another test but I haven't heard about the results yet. The infectious disease team has changed his antibiotics yet again. I'd expect that the chemo would kill everything in his blood, but I might be wrong. Anyway, orthopaedists have pretty much concluded their work regarding the septic arthritis. They're happy to change the antibiotics from IV to oral. However, the final decision will lie on the oncologists and infectious disease team.
Anyway, the journey has just started. On Monday, I (Dom) will be going back to work as we'll try to get adjusted to our new lives as quickly as we can. Natasha will probably try to get short trips which will take her from home for 1 night only at a time to start with.
Please keep the chain of positive thinking and prayers for our young Rafa.
Rafael really enjoyed his afternoon at home. It was so funny to hear him yelling at Gabriela - "Noooo LELA" :-))
His surgery went well yesterday. He was fasting in the morning and was so hungry, he kept asking me for food and a cookie. I tried diverting his attention, but he was fixated on having a cookie. In the end I had to trick him by saying I was going to look for the "food Dr" (everyone there is a "Dr" to Rafa) to see why she wasn't bringing his cookie.
He recovered well and they have already removed the IV line from his hand - Yeah!!!
He woke up very hungry and wanted to start eating Pao de Quiejo (cheese bread) straight away. He vomited twice and after that, was feeling fine and eating more Pao de Quiejo (thanks Tia's)
His chemotherapy will start today. This first round is a really harsh one, that will knock him about a lot, but it's designed to really "get in there" and start killing cancer cells (especially in his bone marrow)
The Dr has told us that even though he will be home for a few weeks before his next treatment, we can be sure that he will get an infection soon and need to go back to hospital again :-(
Xxx
Rafael came home for one afternoon after all. It was so good. He even started walking, which he refused to do at the hospital. I think the contact with his own home, his toys, his family all together and some friends made all the difference. He was smiling and playing with all his toys. His favourite one at the moment is his race car track. He loves it!!! At the end of the day, after all this playful exercising, he got really tired and need to sit down and relax. He watched a movie with Lela and Gabriel.
Unfortunately, it was a visit for a few hours only and he had to go back to hospital in the evening. We asked who he wanted to go with him back to hospital. The expected answer was "Daddy". However, he chose Mummy, just to throw a tantrum at the hospital when he realised Daddy was not there :)))
Anyway, if everything goes according to plan, he should have his Hickman’s line placed today (11th July). Not sure if we explained what it is, but it will work as a more permanent intra-venus line so he doesn't need to have all those IV sticking out of his arms. All treatment will go through that.
More news tomorrow or later today.
Rafael didn't have the Central Line put in on Monday as planned; he will have it done on Friday instead.
He has moved to the oncology ward and we are in Room S8 for now. It is private and has a door :)
The last 2 days have been all about more tests - baseline tests.
Some of the chemotherapy drugs have side effects, so the Dr's get a base line now of Rafael's hearing, heart beat/rhythm, and his kidney function.
He is still on IV antibiotics, as the infection level in his blood has not gone down since his last hip surgery and in fact, has doubled. His CRP is now 150!!
In himself, he is good. We definitely have a little fighter here :) This morning he threw another tantrum and I cannot believe how strong he is, it is almost hard for me to hold him down..... and when those arms start swinging - watch out.
He may be going home on Thursday for a few hours, in between his antibiotic runs. We hope so, what fun just to have him home for a few hours :) :) :)
xxx
A huge box arrived yesterday afternoon for Rafael - and I mean HUGE!!
A couple from TLC For Kids arrived and asked Rafael if he liked dinosaurs? Yes, T - Rex he replied.
The man opened the box and pulled one out. Rafa was happy and we said thank you.
However, the man started pulling out more dinosaurs, and more!! Then transformers and more transformers! Then Lightning McQueen cars and racing track and batteries.
We were stunned; we didn't know what to say. Thank you doesn't seem enough...
Of course, Rafa wanted to open everything straight away, but there is just too much stuff!!!
xxx
A roller coaster day
Rafael was meant to go to surgery at 8:3 to have a Hickman's Line installed in his chest.
It was postponed, and then cancelled and we didn't know why?? We truly (individually) started to think the worst - that they were giving up!!
It took some time for Oncology to come back to us, but the reason it was cancelled was that they might need to do more biopsy or more tests and they would prefer Rafael to have 1 anaesthetic ..... geez.... too much stress.....
We weren't alone as we fourselves to not hearing good news, over the weekend they have been giving us a bit of information here and a bit here ...
So, it is Neuroblastoma and it is stage 4..... crap, crap (and every word in every language that we shouldn't type on a child's blog)
Rafael will have VERY aggressive treatment for the next 9 months, including chemotherapy, radiation, surgery and bone marrow transplant.
He has moved to the oncology ward now. If he can stop the morphine drip in the next few days and start taking pain killers orally ( and antibiotics) , he may be able to come home for inally met with the Catholic Chaplain. We had been waiting since Friday to meet him, to only find out today that he is a she; it's a Sister, not a Father :-)
We met with the Dr at 2 pm (finally) to hear the "crap" news.... we had already resigned a couple of days before he has surgery on Friday to install the line.
He will start chemotherapy on Saturday. The plan at the moment is that he will spend 3 - 4 days in hospital to receive chemo and then be home for 3 - 4 weeks.
We are now in a private room with a door, so hopefully we can all get some rest and quiet whilst in hospital.
xxx
Yesterday and today Rafael has been comfortable. They have been keeping up the morphine and other pain relief.
His stomach is very sore where they did the biopsy. I cannot believe how big the cut is, nearly his whole tummy :( They said they needed it that big as they had to go very deep, nearly to his spine.
Tomorrow he will have more surgery, this time to put a Hickman's Line into his chest, which is a line that chemotherapy and any other medications can be connected to directly and it is more permanent ~ 6 weeks. That should free up his hands from having the horrible cannulas.
Domingos finally got to spend a night at home with Gabriela and I stayed at the hospital. Despite Rafael's protests, we need to be a bit firm with him, as it's not going to be a short term arrangement.
Thank you for your replies and messages
Know that they mean a lot to us.
xxx
Things here are just so difficult and hard to comprehend.
Mingo really wanted to try to come home tonight to be with Gabriela, but Rafa just wants his beloved Daddy, and of course, we cannot deny him.
Today, Rafael went to surgery at 9 am and we were expecting to be called to recovery by 10:30 am ... they did not call us in until 11:30 am . We were freaking out. Mingo was just pacing up and down the corridor.
The Dr's think it is neuroblastoma :-((( What a horrible sounding word. It really shocked us. We thought that maybe lymphoma wasn't so bad, but this?
Results coming in (waiting)
Urine test - shows signs of neuroblastoma
Biopsy - up until Monday
Bone Marrow - shows signs of neuroblastoma
Lumbar puncture - clear
The biopsy will give the clearest result of all
It is not early stage and probably aggressive treatment will be needed.
Rafael had his CT scan this morning. It showed some tumours in his glands (I think)
Today and tomorrow, he is having many tests.
The Dr said he could have Lymphoma, Neuroblastoma or Leukaemia, so they are doing EVERYTHING to gain a correct diagnosis.
In the morning he will have a surgery to perform a biopsy on his stomach, a bone morrow from his hip, a lumbar puncture and a full blood test.
Today they took a urine sample to test for the Neuroblastoma.
By tomorrow night / weekend, we should have a better idea of what they are dealing with and how to treat it.
He may start chemotherapy as early as the weekend.
We have been seen by a social worker already and they are there for us whenever we need.
Many kisses / Mil beijos
Tasha
Thank you so much for your emails and calls of love and encouragement.
Rafael will have a barrage of tests over the next 48 hours.
I am sorry to break it to you like this, but I cannot be on the phone to each and everyone.
His MRI turned up an unexpected surprise - he has lymphoma cancer.
This afternoon was crazy, I am shattered, and we needed to tell our families first.
The Dr's words “whilst it's unexpected, it's not catastrophic"
As we all became experts on Septic Arthritis through the internet, I'm sure we will on lymphoma too
Please don't call us for a few days, we are so busy at the hospital and absolutely shattered by evening. Domingos is still staying at the hospital. They have moved us to a quieter room, but soon we will move to the oncology ward.
Once again, thank you for all your love and support
Tasha, Domingos, Gabriela e RAFAEL
xxxxxxx
What a saga!!!
The good news is that clinically, Rafael is vastly improved today.
His head Dr personally went down to the MRI department to get him an appointment. They managed to squeeze him in at 3 pm .
He was fasting all day and by that time, very hungry. We waited an hour until they came and said there were no anaesthetists available and we have to do it tomorrow instead..... grrrr
Today Rafa had no fevers at all, he was generally happy and having fun.... until Daddy left. Oh my gosh - I have never seen him throw such a tantrum. I think he is just "over" it all. For 1/2 he just screamed and screamed for his Daddy and saying he wanted to go home. He was kicking his legs about (and not feeling any pain), he tried to bite me, he threw the remote control at me and then decided to rip his IV line out. As I type this, I can now grin, but at the time he was hysterical and so loud.
In the end, the only way I could calm him down was to tell him that I was going to get Daddy (who was at home already trying to sleep)
I went back about 15 minutes later and he was happy and never even mentioned Daddy again - just his need for food.
They have taken blood tonight, so we will know soon if his infection is going down.
I think I said yesterday he has strep? but actually, he has staph (which causes septic arthritis in 80% of cases)
He is on antibiotics for that as well as anti inflammatory. Something must be working as Domingos said he even woke up happy.
He was also able to show his Dr's this afternoon how much he could move his legs and he was in no pain :-)
He will now have the MRI at 1:30 pm tomorrow (another morning of fasting) Poor little guy, he was already tiny, and now he has lost nearly 1 kg in hospital :-((
Does anyone know how to work that out as a percentage of body weight??? He was 13.8 and now he is 13.0
Thanks again, looks like we are on the homeward stretch now. Things are being done and Rafa is improving.
The photos with Rafa in his orange pj's were taken in the Starlight Room on Sunday; he had so much fun there. It is a room for the children to play games, draw, dance, watch movies etc... He even managed to play air hockey :-))
In case you are wondering about the pizza - it is from our friend's cafe and it is Nutella - she put the marshmallows on top as a treat for Rafa
xxx
