31st May
It was a very long day for Rafael yesterday :-(
His haemoglobin had dropped a lot since Wednesday - down to 62!!!
His blood was already cross matched and waiting for him to arrive, but he needed to have 2 bags and that took about 6 hours :-(
At least he spent the time doing some school work ;-)
His platelets held on at 32, but probably won't last until Wednesday, so now he needs to go back on Tuesday for a transfusion.
Since his stem cell return, he's been having GCSF needles in his leg every day. This helps stimulate white cell production. He had the last one (35 in total) on Thursday night. Dr Michael said that we would expect to see a drop in his neutrophils until his own body can produce more.
Sadly, the count yesterday showed they had dropped a lot :-( He is now back in the "danger, danger zone" at 0.51
We probably won't send him to school on Monday and wait until his blood test on Tuesday to see if they are going up again. He really enjoyed his 2 mornings at school and will be so disappointed if he can't keep going :-(
It breaks my heart and it's SO unfair!!!!!!
29th May
Rafael's doctor said that he could start school again!! Although his neutrophil count still hasn't hit the magic 1.0 yet, he agreed with us that Rafa needs to get out of the house :-)
He started back yesterday and will go for just the mornings until he's feeling stronger.
He is already booked for a blood transfusion on Saturday as his haemoglobin has dropped a lot this week.
That top up of "red cordial" will give him more energy for school next week.
He had such a good day yesterday, but it wore him out - he came home and slept for 2 1/2 hours
23rd May
Perfect day - in and out in less than 1 hour!!!
N O transfusions needed!!!! First time in ages ;-)
And ...... Neutrophils have almost doubled in just 3 days!!!
We are beyond excited and happy
Hb 103, Platelets 34, WCC 1.6 and Neutrophils 0.9
21st May
In the "Hare V Tortoise" race - Rafael is catching up!!! He now has a whopping 0.55 neutrophils!!!
He is now out of the Danger Danger zone and into the Danger zone!
Seriously though, after 6 months with no white cells at all, he's been very lucky to avoid any really serious infections!
Our Warrior is strong and very slowly, day by day, winning this part of his battle :-)
19th May
Rafael has had a very good week :-)
Last week he made it to school for 1 period each morning. He didn't have a chance to chat & play with his friends as they had testing and that meant no talking ;-)
On Wednesday I took him to RCH for his transfusions. I'm not sure where the mix up occurred, but even though his Hb was at transfusion level, blood wasn't ordered, so he just had platelets ;-)
That meant that Saturday was an extra long day for us, but at least I was expecting it and ready. Day Oncology was very quiet and Rafael asked for one of the rooms with a bed.
The blood test showed that he now has 0.9 white cells and a whopping 0.43 neutrophils!!!! Slow and steady :-)
If this pace keeps going, he might even be able to return to school next term!!
He misses his friends so much :-((((( He tries to use FaceTime to catch up with them, but it's not very often he sees anyone. Thankfully one of his good friends came over on Sunday and they had a great time
16th May
Long day today, both platelet and blood transfusions.
13th May
Rafael made it to school for 1 period today and yesterday :-) Yeah!!
10th May
I received an early Mother's Day present yesterday 😀
It wasn't a card, or a hand made gift......
It was Rafael's Full Blood Count result!!!!
From Tuesday -> Saturday his neutrophil count doubled!! He now has a "whopping" 0.22
That is still way below a good level, but after months & months of 0, we are over the moon
We thought he'd need a blood transfusion as well as platelets, but his Hb actually went up a little to 98
9th May
A quick platelet transfusion
6th May
No fevers for 48 hours so Rafael was discharged :-)
5th May
Raf has 0.19 neutrophils!!!!!
It's been over 5 months since he's had any ;-)
It might mean that his stem cells are starting to graft. We'll know more with each blood test. Everything crossed!!
4th May
Beaded Journey is up to date
Rafa keeps spiking a temperature :-(
That means that the 48 hour timer for discharge keeps resetting
He had a good sleep this afternoon.
2nd May
Rafael had his standard platelet transfusion today.
All went well, no problems ...... until we got home!!!
His temp slowly crept up and up
39.8C seemed to be the average - that means an automatic visit to ED.
Dom and Rafa have been there for a few hours already. They've just been moved from a resus room to a cubicle and guess what?? They get to spend the night there again as there are no beds in the hospital!!!
This is a child who has ZERO neutrophils, who CANNOT fight infection and where do they leave him??? ED where any child can walk in with any infection!!! The worst place for a cancer patient :-((
