Melphalan - Dose 2

Fintan returned to GOSH on Wednesday (6 March) for his second intra-arterial chemotherapy treatment.  Due to a shortage of beds, Fintan was not on his normal ward and a bed was found for him on Fox Ward which looks after bone marrow transplant patients, all of whom are kept in isolation, so despite all rooms being occupied it was a very quiet ward with a lovely team of nurses.

Waiting for the call from theatre

Fintan went down to theatre at about 10.30am and returned to the ward about 1.00pm.  The melphalan was administered successfully although he did have a slight 'reaction' whilst under anaesthetic, but it was not unexpected and his condition was stabilised very quickly.  His groin incision didn't cause any problems this time and he was able to sleep off his anaesthetic undisturbed for an hour or so.

Once he came round, as always, he was ready to eat!  We were a little more careful to avoid juice and anything too sweet because of the blood sugar level problems Fintan had last visit, but he was happy enough with pitta bread and water whilst he watched a little TV and played on his ipad.  His eye was also looking good, with no swelling or droopy eyelid.


James and Oliver (who the ward kindly let visit despite a general rule of no siblings)  had to leave mid-afternoon to get home for the older boys, with the hope that Fintan and myself would follow a couple of hours later!  However, his urine was showing traces of glucose and a subsequent blood test showed a high blood sugar level - caused by the large dose of steroids given during anaesthesia; we would be staying the night again!

Fintan took the news in his stride and promptly asked if we could go to the canteen for some dinner, but then the doctor came to see him and by the time we got down to the canteen at 7.45pm it had closed - I think Fintan was more upset about this than having to stay the night!  Dinner was a bowl of Rice Krispies for Fintan and a bar of chocolate from the vending machine for me!

Blood sugar levels had dropped significantly by morning and despite being a little sick and an upset tummy (probably from being starved and all the medicines) he was allowed home mid-morning.

Captain Buckleboots!

As soon as we got home, Fintan was asking to go to school as it was World Book Day and he wanted to dress up, so after lunch he was duly delivered to his classroom dressed as Captain Buckleboots!

Fintan woke up early on the Friday morning in distress because his eye was hurting and he was struggling to open it - the swelling that he so far had managed to avoid was well and truly in evidence.  A couple of hours later his eye was opening enough to enable him to see and he went off to school looking like he had gone a couple of rounds in the boxing ring.  I called into school late morning to check all was well and found him roaring around the playground, pink with exertion and full of beans - the steroids he is on seem to make him a little lively!!

I am monitoring Fintan's blood sugar levels for a few days and he is due a full blood test next week, then he returns to the Royal London Hospital on 3 April for an EUA to see how well the tumour has responded.  If necessary he will receive a third dose of melphalan, but we are hoping this will not be required.

EUA

Fintan was back at the Royal London Hospital on Wednesday (27 February) for his post melphalan examination.  We had a little excitement to start the day; I received a phone call just as we were boarding the train at High Wycombe to see if we could make it to the hospital by 11.00 am as the Queen was visiting a new ward and Fintan was invited to be in attendance!  Alas, it was not to be,  despite Fintan's impressive running skills between stations, we did not make in it time.  Fintan didn't seem too disappointed and had been more interested in seeing her 'horse and carriage' that he tells me she rides in everywhere (we didn't see that either)!!

Fintan went down to theatre late afternoon for his EUA; the relapsed tumour does appear to have responded to the melphalan, not quite as much as the consultants would have hoped but it hasn't grown any more.  They are very happy with his vision which shows no signs of deterioration (in fact his vision test showed improvement) and he has not had any of the possible side effects associated with the treatment.

The next course of action is another dose of intra-arterial chemotherapy, but with a larger dose of melphalan; the consultants felt that, as he is older than most patients and with more body weight, he could tolerate a larger dose which would benefit the eye.  They do not feel that the cancer is in any danger of spreading outside the eye, but his eye is still at risk.  Following his treatment next week, he will have another EUA 4 weeks later and by then the Retinoblastoma Service will have access to and received training on a new ultrasound machine which will provide far more in depth pictures of the eye and tumours. Hopefully, this new equipment will give us a better idea of what is happening with Fintan.

Fintan had a rather rough afternoon, complaining of nausea before he went down to theatre -  he was a little sick just before his anaesthetic, but they were happy to go ahead.  After a short sleep post anaesthetic Fintan was soon requesting fluids and food, but then sat with a sick bowl under his chin for about 45 minutes.  We finally persuaded him to get up and move about with the hope that he would either feel better or be sick - it worked and he promptly had a large vomit and when asked if he felt better said "yes, but my pants are up my bum" to the amusement of those left on the ward!!  Then when it was suggested he sit back on the bed for a while and let his tummy settle he said "but I'm still hungry!"  Once he had selected his biscuits from the ward kitchen for his journey home, we were able to set off.

Fintan always amazes me with his ability to bounce back, despite a long tiring day, having been starved since breakfast, uncomfortable eye drops, an anaesthetic, long journeys in and out of London and late return home he was still smiling when he eventually got to bed.  Then at the end of the next day at school he performed in his class assembly - as part of a 30 pupil steam train - the child with the biggest smile on his face; I have to admit it brought a lump to my throat.

Post steam train performance!