Well a week of emotions it has been. It has been hard to deal with Harry's results. Statistics are only that - a guideline of what to expect. But a guideline that cannot be totally ignored and one hard to push out of the mind and to remain positive!
Basically Harry's bone marrow is not clear. This statistically means if he can get it clear and move through the remaining stages of treatment that his chances of relapse are higher and therefore less likely to make it 5 years post treatment.
Harry is the first child in a while not to get his bone marrow clear in the initial phase of treatment. However, this fact is meaningless in a way, as we know of one little boy already who got his bone marrow clear in the initial stage of treatment, but has relapsed before all the stages of treatment are complete.
The scary thing is that once a child relapses with Neuroblastoma cancer only palliative treatment can be given. Yes, the cancer could be kept at bay for some time, but if that is ever the case with Harry, we know he will never grow up and be all the things he talks about being, although he is very definate that he does not want to be a doctor or nurse.
Harry has nearly completed his first round of chemo, which involves 7 days of chemo. 4 as an outpatient concluding with 2 1/2 days in hospital. Then he has 2 weeks at home, or so we hope without him spiking a temperature or his bloods dropping to levels where transfusions are needed. Then he starts the 7 days chemo again and another 2 weeks at home prior to all the retests. If his bone marrow is still not clear he can repeat this 6 week process again.
If his bone marrow is not clear then, well it will likely be palliative care only as the option.
So we are praying that this new chemo can have the necessary improvements needed in clearing Harry's cancer cells, to the point that he can move into the next stage of treatment.
Both Paul and I have been very tearful. It is hard to remain positive, although we need to. Thoughts of funeral planning do indeed cross your mind. Our hopes and dreams and adventures for our fabulous Harry, possible thwarted by this very aggressive cancer. We do not know.
We hope of course that Harry gets through this treatment, if he manages that, the battle is for it not to come back. It all seems such a rocky path at times, and yes we do stumble into the cracks at times and get overshadowed by the darkness and the sun can seem a long, long, long way away!
However, we have to value Harry as he is this week, which is very well. He was discharged home on Monday eve, to be back in tues am for a dentist appointment and chemo as an outpatient. He has remained at home until fri am, where we are back on ward 76 until Sunday.
I was with Harry on Monday and hospital wasn't so bad. At the weekend we gave Harry his playmobil Boat, which Paul's work had given him at Christmas, but we saved for a carrot during his big test week. It has been a big hit! He has had several long hour baths with it, until the water is cold and he is wrinkly. He had a bath with it last Monday. He then saw Dave the animation guy for over an hour. He used his boat and another one from the ward to create a crash scene whereby people go overboard and a baddy is shot! hmmmm I'm sure you are thinking! Yes not sure where he gets these scenarios from as Ben and holly does not have guns, just fairy wands!!
Anyhow, Harry has to take lots of frames of his boats as he moves them carefully. An hour play gives about 30 seconds of film, but worth it to see Harry concentrating so hard and enjoying the process as much as the end result. Candle lighters pay for the animation chap and is a great activity for Harry to engage with, particularly also as he is not gaining experiences through nursery at the moment.
Harry also loves exploring the corridors of the hospital and we have spent many a time doing this and last Monday afternoon was no exception. We met daddy and Callum on the corridor coming to visit us. We all went for a walk and Harry was keen to take Callum's hand and show him the way. Callum loved this as he was so excited to see Harry. We went to Harry's room, where normality was soon restored and the boys were fighting over the playmobil boats! We quickly remembered why visits with Callum can only be short ones! Though this visit ended with the consultant announcing Harry could go home as the bloods cultured following his spiked temperature grew nothing. How long would it take to pack Bob said, and we hastily git everything in the car to try and avoid rush hour traffic!
Harry has been well this week and has enjoyed playing with his toys and a couple of visits to granny and Grandads and a visit to see grandma on thurs afternoon, following his chemo. Daddy was in charge on thurs, so I took the opportunity to have a day out with Callum and net some friends at Harewoid House. Callum had a lovely time and enjoyed running after Isabelle! So it was lovely to have some quality time with Callum. We try not to let Callum feel left out and gave him his little speed boat also from Paul's work on Wednesday (minus all those tiny bits you get with playmobil). He loves this boat and went to bed with it. It actually kept him entertained until after 8 am thurs, not heard of these days and meant I actually had to go into his room to see what he was chattering about, rather than him bounding across the landing at silly 0'clock, letting everyone know that he is awake!
Playmobil and Lego - defi the toys for the coming years, not just cos the boys love them, but mum and dad live them too!
So we have come full circle since my last entry on Sunday and that is to be back in LGI, though on a shared bay on 76. Harry has had a fantastic time though driving this mini electric car and has mastered 3 point turns better than his mum! It's a Ferrari and Harry looks the part as a formula 1 racing driver. He has explored the car as his dad would, lifting up the seat and examining the charging area, looking at the wheels, admiring the dashboard lights etc, in total awe of it. So that today has made hospital easier.
We have seen some familiar faces, but there are some new ones too. One dad was being shown around the ward and looked shell shocked. His 2 year old is in. There is another little girl opposite us, diagnosed 3 days ago. You can tell the newly diagnosed children as they have all their hair! Harry still has wispy bits, he has his eyelashes and eyebrows, but these could be lost with this new chemo.
It must take a certain person to work on this ward, as children get newly diagnosed, some relapse and others make it through. On the whole survival rates for childhood cancer have increased dramatically in recent years. However, there is still a log to learn about his neuroblastoma forms and how to cure it. There is still an awful lot of research to be done, to get better outcomes.
We, Paul and I are going through the process of grieving for the life we had, whereby we went on trips out, had holidays etc. we have for the last 14 years made the most of cheaper breaks away between jan and march. It is doubtful this will happen this year. If we knew Harry woul be ok in 6 months you can put up with anything, it's the not knowing and also the treatment, Harry is on means that we can't go on jaunts away or trips here and there. Though fingers crossed he stays well and maybe a short day trip can be arranged.
Of course, trips out are prob more for me and Paul in some respects. As illustrated as to how much Harry likes exploring the corridors of the hospital and it's what you make of each day! I am certainly learning that it is not the money you spend, but the quality of the time spent together!
So we shall see how the next few weeks pan out. Everything crossed please and lots if prayers.