Well Harry managed a whole 3 weeks not having to enter LGI. Truly, Truly amazing! Who'd of thought over a year ago I would have been doing cartwheels if physically capable at 3 weeks without a visit to hospital! But it's been fabulously, deliciously wonderful!
I am also very proud of myself, for not fretting about Harry's blood counts, for going with the flow and the fact that I didn't get his bloods checked just in case they had dropped! Harry wasn't accessed until last Friday as planned, when the community nurse came to our house to take Harry's bloods for pre antibody treatment. The results indicated that his Haemoglobin had risen all by itself and his platelets have just maintained at a low 37, but above transfusion levels. This is brilliant, as these results mean finally Harry's stem cells are working, following his stem cell rescue in June last year!
Since Harry has not had to enter the doors of LGI, he has been able to goto school lots! Last week he went 10.30 till 3.15 every day. I was going to push to get him in at 9, but following a discussion with his teacher, we decided there is no rush. I've been allowed to take unpaid leave until the end of April, so there is time yet to get Harry in school all day. He is coming on leaps and bounds since Christmas. Harry is moving onto harder reading books, with 4 letter words to blend together. His energy levels are amazing. He enjoyed playing in the recent snow, sledging down a small slope opposite my parents house, generally having buckets of fun!
A 5 year old and a 3 year old ignite such contagious excitement at the sniff of snow that I must admit it takes me right back to those treasured childhood memories of my own!
So here we are in LGI, the final leg of the hospital treatment: Antibodies number 5. 5 days of 8 hour infusions of antibodies followed by hydration to ensure his liver remains functioning ok! So all being well home on Saturday. Harry is isolated again due to having a cough and cold. This means better nights sleep as its quiet in our own room, but for Harry he misses playing with other children and becomes more demanding for attention. I have again had people come during the Day to give me a break, as otherwise Harry doesn't like me leaving him for more than 5 minutes! Paul is on nights at work, but has booked annual leave for the end of the week, to take over from me for the night.
Harry has been well so far on this treatment, side effects seem minimal and the background morphine is enough at present to manage any pain the antibodies may produce. This stay so far has been a predominantly lego fest! Harry had brought in some lego he got for Christmas and has literally spent hours making and remaking trucks, snow ploughs, a mobile cafe etc! Granny and grandad brought in some vintage lego today from my childhood to add to the building wave here, no recession on ward 31 bed 14, Harry has planned and drawn with the help of Playworker Claire a town, that includes a hospital, park and a police station!
So our final major planned stay in hospital! Harry has 2 weeks of retonoic tablets to take starting Monday and finishing 17 th feb, but that's a walk in the park! Then that is IT! Then retest time probably sometime in March! So there is the potential for Harry to go over a month without having needles inserted into him to test his bloods! Our security blanket of LGI will remain there, but we now need to enter the big wide world again and LIVE!
I say that in particular, enhancing the fact in capitals, because yesterday another boy lost his battle against Neuroblastoma. Alex Sharp RIP! I have never met Alex, but his dad knew my friend's mum and so we were put in touch. Alex finished his treatment on Christmas Day 2011, just shortly after Harry commenced treatment. We were linked as Alex's dad writes a blogg and I could gain from another families' experience of coping with this disease. However, Alex relapsed in March 2012 and took his final breath yesterday at Helen's House hospice. Alex has had an amazing year with his family, going away on holiday, seeing the Olympics, visiting lego land, air museums, walking, scooting, going to school and having fun with friends. This has been between many hospital visits, including more invasive treatment to ease his pain from his growing tumours and administration of morphine at home. However, Alex's family have shown the world how to live when faced with adversity! To create fond memories that can be looked back on in years to come, which I believe is the way forward!
So we will be making the most of time together, really just enjoying doing the normal fun things we have missed out on over the last 15 months, such as going to the park etc we have center parcs to look forward to in May and I am sure we will be planning lots of other adventures too!
I will update you on the fun I hope we can have!