Thursday 30 April 2015

Blog: April 2015

28th April

Gabriela & I arrived home late tonight and Rafael was so happy to see us both. Lela even picked him up and gave him a big hug :-) 




24th April

Dom took Rafael to Dr Reid’s nurse and she checked hi s BP - all was fine :- )

23rd April 

Not a better day at all ;-( 

Rafael needed a blood transfusion and it took hours to start. They spent the day still in the ER - no tv, no door, not even a shower. No food either, just what you can buy upstairs or from a vending machine.

Finally they were transferred back up to Day Oncology, which was very loud and busy. Just before they were due to leave at 4pm, Rafael’s BP went up again. They gave him a drug to bring it down and then they’d repeat the BP test.

Dom said Rafa is complaining of pain in his back, I hope it’s just from not moving around much the last 2 days!

They finally made it home at 7pm, after Dom had some “words” with the nurse about Rafa’s BP. They asked Dom to take Rafael back tomorrow just to check his BP. Dom refused to go back, just for a 1 minute test. e told them he’d take Rafael to our GP instead :-) 

22nd April

Domingos and Rafael are at RCH and the stem cells have already been rein fused.




It was a very long day for them. 2 hours of pre hydration, 1 hour for the stem cells and 4 hours post hydration.

They gave Rafael Panadol, Fenergan and some other drug and he's been sleeping all afternoon. He didn't wake at all during the "important" bit.

The day got worse after I spoke to Domingos this morning

Around 4pm Rafael's BP started going up and his pee started turning red. The red colour is expected after a stem cell infusion, but unfortunately, you cannot leave until it returns to normal. 

The high BP was unexpected.

They ended up calling a Dr and they gave him some drug to make him pee more as he was retaining to much fluid.

Poor Rafa and Dom spent the whole day in Day Onc (outpatient). It closes at 7pm, so they had to find somewhere fast to put him for the night.

Guess what??? No beds available in the whole hospital and he's not allowed to go home.

Solution, send them to ER for the night!!! As you can imagine, Dom was not impressed! Rafael has no white cells to fight infection at all, yet they send him to an open room in the ER, where every second kid has an infection! They couldn't even fit him into one of the "good cubicles" in ER! No, he's stuck in a little box with no tv and just a curtain :-( 

I spoke to Rafa earlier and he sounds so down and sad :-( 

His friends all went back to school yesterday and he's just doing the same crap over and over.

They finally did a blood test late tonight and he needs a platelet transfusion (as expected). That will probably happen overnight.

On the “upside” because they are already there, the transfusion will be done overnight and the Fellow can review Rafa in the morning and then they can go home, which means they don’t have to go back on Thursday as planned :-) 

My poor boys are doing it tough today. I miss them :-( 

21st April

Rafael had a platelet transfusion on Saturday and it held up on Monday and he didn't need another one as planned

His counts were actually very good (except White Cells!!)

Now the "tricky" part starts

He is due for another transfusion on Wednesday, but because he is having his stem cell return, they can't transfuse until the next day! We hope that he can hold out

This week is "difficult" for me as a Mum, because most of the time, it's me that takes him to all of these appointments, scans, transfusions, tests etc.

This week, Dom is holding down the fort


16th April

After more than 1 year of planning and not knowing if we’d actually be able to go, today Gabriela & I left for Istanbul, on our way to Gallipoli for the 100 year anniversary service.

It's been a hard 2 weeks for Rafael

He started taking 13-cis-retinoic acid (Accutane) because he is not having any other treatment at all, and we are all very scared of the NB taking off again!! 

For NB, it has been found to help the cells to differentiate. Children usually have this drug at the end of their treatment. He has 3 pills twice a day for 14 days, then a 14 days break.

Accutane is usually given to people who have very bad acne.

For Rafael, the affects were immediate! His whole face turned red and then started peeling, his lips dried and cracked, and then the peeling moved to the rest of his body

Last Saturday when he was having his platelet transfusion, the nurses were very concerned. They've seen this drug used for many years, but said Rafael's face and his pain were too much!!

I immediately sent a text to Dr M and he agreed to stop for the weekend and then continue at 1/2 dose for the rest of the 14 days.

The redness went away straight away, but his body continues to peel.

I bought him a good moisturiser and some paw paw lip balm - they are helping a lot.

We met with Dr M on Tuesday to discuss the never ending plan of what to do next!!! Still nothing has been decided. Rafael's case needs to be presented to the Clinical Ethics committee for review. What we want is for them to consider doing a bone marrow transplant using either Dom’s or my marrow. This is called a Haplo Identical transplant. 

They are being very cautious about the next step, as it's not something they give to NB children. More red tape!!! However, RCH have recently started doing this with leukaemia patients, so they have the ability to do it. 

Not only will this help Rafael’s marrow recover, but also have an immunotherapy effect and start attacking any NB cells.

Yesterday, right at the end of Rafael's platelet transfusion, he had another reaction.

His eyes puffed up and started watering, his lips got swollen and then his nose started running. He was fine, gave us all a scare, but we had to hang around a lot longer for him to receive more medicines.

Meanwhile, Dr M came by to tell us that the stem cell team have approved Rafael to receive his stem cells back next Wednesday!!! These are his original stem cells that were frozen back in 2008.

The short term plan is that Rafael has stopped cis RNA for this cycle - yeah!!! 
He will have automatic platelet transfusions on Saturday, Monday and Wednesday and on Wednesday his stem cells will be reinfused. 

If he remains well that afternoon, he can come home, but has to go back to RCH on Thurs & Fri for review with a Fellow as well as another platelet transfusion on Saturday!! 

He may also need blood transfusions in that time.

Let all hope that those stem cells, which haven't been damaged by years of treatment, can find a spot to burrow into his very damaged bone marrow an they can graft!!!!

15th April

Rafael needed an obvious platelet transfusion today.

His face is covered in little red dots, which are are petechiae - broken capillaries

Rafa can only just smile through his cracked lips




10th April

Thank you to David from Challenge for remembering Rafael’s love of football. 

Today the E.P.L. Cup was visiting Challenge House and Rafael was invited along. 

This is the first time the Cup has ever left England and no one is allowed to touch it. The 2 minders both wore white gloves. 

However, they did allow Rafael to touch it and get close and have his photo taken. He also met and ex Manchester City player who was here with the Cup.

A very special morning




8th April

We had to wait 3 hours for platelets to come from the Red Cross as no one booked Rafael in today, even though he has a permanent booking!!!

Rafael can't smile because his lips are cracked and split and bleeding





On the "up side" that gave the nurses time to start his blood transfusion as his level was really low! So much lower than usual

Just before they finished and started to run the platelets, the nurse told us that there would be another bag of blood afterwards! Argh - L O N G day

Towards the end of of the platelet transfusion, Rafael started complaining of pain on the inside of his knees and asked me to massage them. Within about 20 minutes, the pain had gone to his achilles area and he was in agony! In fact, he was crying and screaming in pain

It was awful and I didn't know what to do to help!! I spent the next 40 minutes massaging his ankles and rubbing his back as he cried and cried

The nurses paged a doctor to give him a pain killer. Rafael begged for a heat pack - guess what? They don't have any!!!!!! They checked with the Ward - nope! and even day Surgery - nope!

The Dr prescribed Oxycodone and after 20 minutes, Rafael was inconsolable and still in agony!

One of the nurses could see how much Rafa was suffering and she improvised a heat pack as well as getting another dose of Oxycodone for Rafa!! The "heat pack" was a wash cloth, soaked in boiling water, sealed inside a plastic bag, with another washcloth on the outside. Guess what??? It worked straight away!! Within minutes of me holding the heat to his ankles, he calmed down and was able to rest and started to feel much better


By the time Dom arrived, he was back to his smiley, talkative self

His eyes got really puffy, due to the high intake of fluids today! 450 ml of blood + 150 ml platelets. Once again - thank you to all of the donors out there.


Finally after 8 1/2 hours we were out of there!!!!


 5th April

The Easter Bunny couldn't carry all of the chocolates to RCH, so Rafa had to wait until he was discharged before he could start the choc feast ;-) Consequently - Lela has to wait too

The Easter Bunny did find his way to the ward to sneak in a chocolate bunny while he was asleep. Rafa kept telling me it must have been the nurse, it must have been!




Thankfully it wasn’t too long a wait, Rafael was discharged just after lunch :-) 

3rd April

Today is the Good Friday Appeal. It’s probably one of the best days to be inpatient, if you ever have to be stuck at RCH. 

There are lots of celebrities and tv interviews and dogs and sports people roaming the hospital.

Well, not today on Sugar Glider ward, no special visitors except for Humphrey B Bear. Rafael did get to meet ~ 5 visiting dogs though and he got lots of cuddles ;-) 

Rafael needed a chest X Ray and it was SO eerie - totally deserted on the LG floor

He did manage to find a super huge teddy to cuddle

Whilst he was "free" we popped outside to meet the Customs & Border Patrol puppies - so cute! 

We also stopped by quickly to say 'Hi" to Nick McCallum from 3AW

The hospital itself was crazy, people everywhere, but the ward was very quiet and you wouldn't have known much was happening outside.

I was lucky enough to try one of George Calombaris' famous souvlaki - yummo!!! They were flat out selling them all afternoon, the queue was L O N G







2nd April

A trip to the front of the queue at ED



Not how we'd hoped to spend Easter

Rafael had a 39C fever yesterday. We held off bringing him in until this morning, "hoping" the fever would disappear :-( It was still 38.6C this morning, so that meant I really did have to bring him to ED - he cried a lot


We are still in ED as there aren't any beds available at all!! It's going to be a long & uncomfortable few days if one doesn't come up