Day +6

There hasn't been much change since my last update - Ryan's pain in his mouth and throat is no worse and still controlled by a continuous low dose of iv morphine, his temperature is hovering between 37.5 and 38.0, his counts are rock bottom but he is doing ok.  He is drinking but not eating as his throat hurts when he is eating and his tummy is very upset from all the anti-biotics. He has been a bit more tearful the past couple days and is very bored of the hospital routine of disinfecting strip wash and moisturise, bloods, new lines, laser therapy, blood products, constant iv medication, blood pressures, electrodes, SAT's monitoring.  We really can't blame him, it is monotonous but for us that is a good thing - we don't want any drama, we are happy with plodding along in this critical period while we wait for his new stem cells to graft.  Still it isn't easy to explain that to a 6 year old who can't comprehend how pleased we are that he is coping so very well.

Having said that last night his pulse was high and his blood pressure was low while he was sleeping and so a doctor was called to check him over.  His blood pressure was taken every 15 minutes from 8pm until 1am when things seemed to settle down and then the monitoring reduced to 2 hourly.  Luckily Ryan was totally oblivious to all of this and had a reasonable sleep.

The doctor looked over his blood results today and said they were perfect but there are no new cells as at this morning, it is still early days but that doesnt stop us wishing for them to appear....

Day +4

As predicted by the doctor Ryan spiked a temperature in the night and has been started on new anti-biotics.

This morning he says he's ok and is quite cheerful. The low dose morphine is controlling the pain in his throat. He hasnt wanted to eat but is drinking.

You will notice that Ryan always seems to be wearing the same thing in the photo's. Well I brought lots of different t-shirts and comfy joggers to wear in the day and PJ's for night time but there is a constant draught from the air conditioning system that keeps the room pressured and so Ryan wants to wear his long sleeve PJ's all day too. He has a set of 3 that are very similar and are his favourite things to wear and so he wears them all the time :-) This photo took 10 attempts as in the 9 others his eyes were still looking at minecraft!

Day +3

Ryan had another reasonable night but woke at 5.30 and couldnt get back to sleep. He is still having fluids all night which are very necessary and although less than they were are still causing a disturbed night.

He has said his throat is sore this morning when eating breakfast and so he will probably start on a continuous infusion of low dose morphine later today as the pain will get progressively worse until the new stem cells graft. In himself he is still happy to see his teacher and play x-box but is noticeably tireder these past few days.

A couple days ago we started a laser therapy which is being trialled and is hoped to reduce the effects of mucusitis. It involves a laser being shone onto the effected area, cheek or neck, while Ryan is sitting in a chair watching power rangers. It is supposed to stimulate the blood circulation in these areas and slow the mucusitis. It has been used for 2 years in a hospital in Stuttgart with some promising results but not for long here. As there are no side effects and its painless Ryan agreed to give it a try. It's ten minutes each area twice a day, although so far we have only managed it once as Ryan's mornings are quite busy with the washing routine, breakfast, physio and his teacher but we are trying to rearrange it so we can do it twice.

Unfortunately I felt like I had a cold coming yesterday afternoon and during the evening was sure I had something so left hospital early. Although I feel ok and 'it's just a cold' and i'm not coughing or sneezing I am going to stay away today to ensure i dont pass anything on to anyone, especially Ryan. I hate being away from him but would hate it more if he caught a cold from me. Im hoping a day of doing nothing and a good nights sleep will sort me out and I'll be fine tomorrow!

Day +1

Ryan had no reaction to the stem cells and continues to feel well. Despite the fact his mouth is starting to look sore he says he has no pain. He has been started on TPN (IV nutrition) today which is standard procedure at this point in treatment. He is still managing to eat small portions of food and is up and about. I think I am asking too often if he is ok because he says's ' Mum i'm fine!' and gives me a look to say stop fussing!

Day Zero

Ryan has just received 18 million of my stem cells! I felt really emotional but Ryan was more interested in watching Power Rangers Jungle Fury!

Today he is tired but still eating and spent lots of time making lego.

Day -1

At 8am I arrived at the stem cell clinic (with my sister for moral support) along with 3 other couples. I had to give myself my morning injection at 6am and was given another injection on arrival. By 9am I was connected to the machine and the harvest was underway - I managed to keep my cool and looked the other way when the needles were going in. Jackie said the needles were big and Yes they did smart quite a bit and I could feel them the whole 6 hours but maybe the process wasn't quite as bad as I was expecting!

Ryan had a reasonable night and is still doing well, he perked up after a blood transfusion and does not yet have mucusitus so is still drinking and eating small amounts of food although the chemo has effected his appetite.

And to finish the day on a positive note the doctors have just confirmed that they collected enough stem cells in the one day and so I dont need to go back tomorrow. Apparently there are currently 23 million stem cells and 2 million is the minimum requirement. The doctor explained that between 30-50% are lost during the preparation process so the actual number being given to Ryan is not yet known but he will have them all.

Day -2

Ryan woke at 5.30pm yesterday after 5 hours sleep and wanted breakfast again! This time it stayed down and so he had seconds. He had a reasonable nights sleep and today had the second dose of melphalan. I hope and pray this will be the last dose of chemotherapy he ever has to have.

Although he did feel sick this morning Ryan hasnt actually been sick and has eaten small amount of breakfast and lunch and his mouth is still ok. We are very surprised he is so much better today and really really pleased. So he is back on-line on the x-box!

Today is the end of conditioning and tomorrow he has a drug called cell cept which is designed to reduce the risk of Ryan rejecting the stem cells.

First thing tomorrow morning I have to go to a different clinic where my stem cells will be harvested. My sister is coming over for a few days to help out and Ryan is looking forward to her coming. Hopefully I will get to see Ryan later in the day and by the end of tomorrow I should know whether I have to repeat the procedure a second day.