(Finally finished!)
It has been over 10 days since our last entry and quite a few things have happened chez the Hope-Masons. After our second visit to GOS on the Tuesday we had a follow-up appointment with Kate Farrer (NNU) and Suzanne Crowley (Paediatric Doctor specialist in Respiratory Problems – I’m sure I will change this description once I’ve checked it with Dr Crowley herself!). 
As Massimo is so special we were seen last, so that they could catch up with his file and spend time with us, so although our appointment was 9.30 we didn’t get seen till much later. Whilst waiting for our appointment we met Massimo’s Social Worker, a lovely lady by the name of Stella who assured us that she would do her utmost to get us the higher rate of Disability Living Allowance and to make sure that we got a blue badge (what was an orange badge and previously known as a disabled badge). During our appointment Dr Farrer and Dr Crowley saw that Massimo’s breathing wasn’t as brilliant as it should be and although some of his difficult was possibly due to the recent chemo, they decided to try him on ventolin nebuliser to see if this would help but in fact it made little or no difference. His breathing and saturation levels did improve by the weekend, so I think that he was struggling with the chemo. Anyway, we all had a lovely catchup. After our appointment Helen came down to see us and together we decided to redo his Hickman Line dressing so by the time I left SGH it was 1.45 pm!
We spent the afternoon recuperating round at Kate’s with Maz and Maddy and the evening was uneventful. The following day Ann came to spend the day with Massimo and I. I don’t think she could quite believe how much he has grown since the last time she saw him in March! Massimo was due back at SGH for a flexible bronchoscopy. All went without a hitch and Ann treated us to lunch at the Urban Coffee Shop on Tooting Broadway. After lunch we came back to the house to collect Jasper and Horace, Lucy and Charlie (Ann’s Cavalier Spaniels) and we went for a fantastic walk in Richmond Park where Massimo perfected the art of loud raspberries!
Friday morning Stella came to see us and then at lunch time Ann and I went to Bucci’s together. Ann lives in the New Forest and is only up in London when she is visiting her daughter so we take advantage whenever she is here! In the afternoon I was due to meet Lisa at Harrods to learn how to bustle her wedding dress: Lisa is getting married in September and I am one of her bridesmaids, actually I think matron of honour is the correct term. For the record I must say that she looked stunning and her dress is absolutely beautiful.
On Friday evening my Mum and Dad called to say that Mum was coming over on Wednesday. As J’s sister Amanda and her family were due to come on the Monday the timing didn’t seem to be the best! Saturday we spent as a family at home doing nothing much. Sunday we all went down to J’s Dad’s in Hampshire for a family lunch. Twelve of us (including Massimo) had a lovely day and plenty of fresh air, even though Jasper and Horace insisted on fighting with Dylan (Springer Spaniel).
On Monday Amanda, Thierry, Dan (7) and Emilie (4) arrived for a five day visit and Sandra (J’s aunt) joined us for lunch. After a pleasant barbecue and a little bit of shopping the day was rounded off with dinner with Tatie Lucy and her significant other, Marco. Tuesday dawned bright and the plan was to go to the Natural History Museum as soon as Massimo’s trachy change had been completed. Of course, the best laid plans of mice and men often go awry.
Our appointment with Mr Daya was for 10.10 and Amanda accompanied Massimo and I. We were at SGH by 9.45 am (a minor miracle) and after a very short wait we were ushered into a room for the flexible bronchoscopy and a trachy change. Unfortunately Massimo’s cough made it difficult for him to breathe whilst the camera was down his tracheostomy tube and he got quite distressed. Mr Daya wanted to remove the trachy and have a look down without the tube in place. We cut one of the ties and were waiting for Massimo to get his breath back when he started coughing again and actually coughed out his trachy tube. Once the tube was remove (this bit was very scary!) there seemed to be blood everywhere. Thank goodness for Mr Daya’s steady hand as he inserted the new tube. Massimo was really quite distressed and Mr Daya wanted him to be reviewed by Dr Crowley before we went home. Both Dr Crowley and Dr Heath examined Massimo back on Pinckney Ward and both said that although he wasn’t 100% he was definitely well enough to go home, however Mr Daya had been concerned about the amount of blood that there had been and that Massimo might start to bleed again, so it was decided that we would wait for Massimo’s blood results to come back and if the platelet level was good we would go home. At this stage we called home and told Justin and Thierry to take the kids to the Natural History Museum and have fun!
Finally at 4 pm the result was available on the computer and it stated “sample clotted no results available”. Grrrrrrr!! They took blood again but this time we went home and agreed that if the results were bad we would come back. We didn’t hear from them at all, so we assume all is well. We got home all of half an hour before the rest of the gang and as soon as Judith, the respite nurse turned up at 5 pm we all went off to the pub and then to a curry house where we met Uncle John and Cousin Polly and her fiancé Douglas. A fine evening was had by all and thank you Uncle John for your generosity!
Wednesday my Mum arrived at 5.30 am at Gatwick airport, whilst she rested back at the house, Amanda and her kids and I went shopping whilst J and Thierry baby sat Massimo. In the afternoon I took Mum to the GP as she was very breathless following her flight over. By 5 pm Mum and I were back at SGH but at the A&E department this time. Mum was admitted firstly to Richmond Ward and then immediately transferred to McEntee Ward when the doctors thought she might have TB and be infectious. The upside of this is that she has a room to herself with an ensuite shower! Mum is still in SGH and will be for the foreseeable future as they try to figure out what is wrong with her.
On Thursday, as the photos show, all of us went off to the London Eye and then a boat trip down to Greenwich and back. An absolutely brilliant day that Massimo enjoyed thoroughly and refused to sleep all day as he wanted to see everything!
On Friday Amanda, Thierry, Dan and Emilie left to go to stay with J’s Mum and Massimo, J and I spent the afternoon in SGH. Massimo’s coughing had been quite bad and his breathing sounded a little wheezy. With the bank holiday weekend looming I did not feel it worth worrying all weekend so thought it best to have him checked over. Unfortunately nothing can be done about the cough and although his wheeze isn’t brilliant, his saturation levels are OK, so although they wanted to admit us for “observation” we came home after a chest x-ray revealed no huge problems.
For the weekend Vittorio (my brother) and his girlfriend Leanne have joined us. It feels a little like Picadilly Circus here but we hope to relax a little over the weekend. Congratulations on making it to the end of this very, very long entry!