Positive News

It is two weeks to the day since Fintan's enucleation and he has amazed everyone with the way he has adapted to losing his sight and his ability to continue smiling!  He returned to school Tuesday of last week (30th April) and managed 3 days until 1.00pm and Friday until 2.00pm.  He went straight into learning braille and has exceeded all expectations in his first week; he is totally included in all normal lessons and is interacting well in class sessions - his teacher is delighted, as are myself and James, at how well these early days have gone.  It is exhausting for everyone, as we all have an awful lot to learn, but before long I am sure it will be second nature.

Following the glorious bank holiday weekend, which Fintan spent most of his time on the trampoline or playing in the garden, he managed a full day at school yesterday and we hope this will continue from now on.

We returned to the Royal London Hospital today for a follow-up meeting with Fintan's consultant who is very happy with how his eye socket is healing.  We also received the results of the tests carried out on his enucleated eye and are very pleased to report that the tumours had not spread beyond the eye globe and therefore no chemotherapy would be necessary - a great relief to us all.

Fintan has an appointment with Moorfields Eye Hospital Prosthetics Department on 20 May and will see his oncologist, Dr Kingston, at Great Ormond Street in a few weeks, but does not return to the Royal London Hospital for 4 months!  Fintan was initially pleased with this news and that he would no longer require "smelly sleeps" (anaesthesia) for eye checks, but the realisation that he would not see members of the retinoblastoma team that have become so familiar to him as often put a little pout on his face!

We were all very emotional leaving the hospital today and Fintan had lots of hugs for the nurses and Rb team; we are going to be a little lost without our constant trips to the hospital, but will be kept very busy adapting to Fintan's new way of life.

Busy at work

Nothing stops Fintan enjoying himself!

Fintan's new workstation - the novelty has worn off a little and the brailler is in danger of collecting dust!

Early Days

Fintan's enucleation surgery went ahead as planned last Wednesday (24th April) and was carried out successfully with no complications.  Having signed consent around midday, we did have a little 'wobble' and requested we meet with the Rb team once more; although we had spoken to them individually we hadn't seen them all together and it helped to clarify a few questions we had.

A change to the afternoon list meant Fintan was no longer the first procedure, but he was eventually called for theatre just before 3.00pm; this was when the reality of what was about to happen hit him and  he became quite distressed.  As always, only one parent was allowed to be with Fintan when he had his  anaesthetic administered, so there was the added stress of saying goodbye to daddy, however, it was the most calm he has been whilst having the gas and was asleep within seconds.  A problem with the first theatre case meant Fintan's surgery was delayed and we did not get the call that he was out of theatre and in recovery until after 5.00pm - it was a very long afternoon.


When Fintan was returned to the ward, despite having a large bandage  over his eye and around his head, it was reassuring to see he still looked like the old Fintan.  However, because of the length of time he had been under anaesthetic, he was very groggy and slept for  a couple more hours.  When he did come round he was very nauseous and struggled to keep any fluids down.   Only one parent could stay the night on the ward, so I reluctantly left him at 9.00pm and James had to deal with a disturbed night.

I returned to the hospital the following day at midday to find Fintan sitting up in bed, having lost the large head bandage, a little brighter, but still not himself.  He continued to suffer with nausea and was very tired, but over the afternoon we managed to persuade him to eat and drink a little and encouraged him to have a walk around his room.  By early evening, with the help of his Rb girlfriends' persuasive charms, we talked him into a trip to the hospital restaurant, which he coped with incredibly well!  It was decided that Fintan should stay another night at the hospital as his fluid intake was still low and everyone would be happier if he was a little more mobile and brighter before leaving.

When I arrived at the hospital the following morning, I met Fintan in the restaurant, minus his eye dressing, munching on a doughnut and much brighter and chattier; a very reassuring sight.  As soon as he had been checked over by the doctor, he could be discharged.  We finally left the ward at about 1.30pm with Fintan riding his Gruffalo Trunki down the hospital corridors and out to the car.  We arrived home shortly after the boys got back from school and they were very pleased to see him.

Fintan has settled straight back into home life; he is navigating the house really well (a couple of bumps) and even managed a trip out to John Lewis on Saturday afternoon.  He was completely unfazed by the busy store and very noisy restaurant - he never ceases to amaze me.  He has had plenty of visitors over the weekend and enjoyed being in charge of dishing out the custard creams (his favourite)!

Although not quite ready (or rather I wasn't ready to let go) to return to school this morning, he did pop in for a visit which he really enjoyed.  He has an area in the classroom, with a desk and drawers for his braille equipment and he spent 10 minutes investigating this whilst I chatted to the teachers.  The plan is for him to return to school tomorrow (Tuesday) and see how it goes; he will be fully supported by the school and his visual impairment team and I feel very confident that Fintan will continue to thrive in this environment.

We return to the Royal London Hospital on 8th May for a check up and, assuming all is okay and the socket is healing, we can start the process of having his artificial eyes moulded and painted.

Update

We have finally had confirmation today that Fintan will have his remaining eye enucleated.  The Retinoblastoma team in London have consulted with teams in Philadelphia, Birmingham, Sweden and Fintan's original consultant (who retired from the NHS a couple of years ago) and all have come back with the same opinion that the only safe option for Fintan is to remove the eye.

Surgery is planned for Wednesday 24th April.  Of course, we are all absolutely devastated that Fintan will be losing his sight, but his well being is more important and everyone involved in his care is in agreement that if his eye was to remain in place the risk of the cancer spreading was very high and as his tumours appear to be resilient to all treatments thrown at them his life would be in danger.

Fintan was back at school today, following a meeting with his teachers (and a trip to his local hospital with another infection in his existing artificial eye); they have already been very supportive and we feel confident that Fintan will cope in this familiar setting, with his friends and teachers he knows well.  The plan is to get him back to school as soon as possible after surgery; it is going to be hard, but Fintan is a very special boy and will get through this with a big smile on his face.

Fintan had a fantastic weekend in Disneyland Paris, followed by a trip on the London Eye on Tuesday and a trip to Thomas Land at Drayton Manor, Tamworth on Friday/Saturday.

Breakfast with Donald

Fintan's special treat
- 1/2 hour playtime with Goofy

 

Breakfast with Minnie Mouse

The London Eye 

Thomas Land - Drayton Manor Hotel

Terence's Driving School!

Devastating News

We were back at the Royal London Hospital for Fintan's post melphalan EUA yesterday and unfortunately the news was not good.  Although the area that was initially being treated by the intra-arterial chemotherapy had responded, there was now extensive new tumour activity spreading around the lens of the eye.  The location of these new tumours has a limited blood supply and makes treating it with chemotherapy drugs or any other form of treatment very difficult and, having had everything going thrown at this eye and it still relapsing, has left the consultants with no option but to enucleate (remove) the eye.

They will be consulting a Retinoblastoma team in Philadelphia for a second opinion, but we are assuming this will be just to confirm enucleation is the right course of action.  The tumour activity is very aggressive and the eye needs to be removed as soon as possible and Fintan is provisionally booked in for his enucleation next Wednesday (10 April).

                                                          Big Smiles for the Eye Test

Due to Fintan having suffered with diarrhoea since last Friday, but not seeming unwell in any other way, we had contacted the hospital on Tuesday in case they wanted to allocate him a side room; however, they wanted him assessed at our local hospital and informed us that he would not be allowed to undergo his EUA.  Wycombe Hospital were happy that he was not unwell, took a stool sample and allowed him home.  My gut instinct was that we could not wait another week for Fintan's EUA and we managed to make arrangements for him to be seen as planned, just arriving at the ward a lot later than normal, being escorted straight to an isolation cubicle and Fintan being treated as highly infectious!

Despite the devastating news, I am glad we insisted on being seen this week as another 7 days would have given the tumours more time to spread.  Once the eye has been removed, it will be examined in the laboratory and if there is any sign the cancer has spread beyond a certain point in the eye precautionary systemic chemotherapy may be necessary - he had this after the removal of his right eye.

Fintan has taken the news of losing his sight with amazing maturity; he seems to understand that he will no longer be able to see and has already started talking about a guide dog, white stick and learning to read braille.  No doubt, with his strength of character, he will deal with this testing time better than the rest of us put together.

We have managed to book a last minute treat to Disneyland Paris for Fintan and the boys - just hope the weather improves!

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!

Intra-arterial Chemotherapy

Fintan had his first dose of intra-arterial chemotherapy this week at Great Ormond Street Hospital.  The procedure wasn't without its problems, but the melphalan was successfully administered to his eye.

We went to GOSH on Tuesday for Fintan to have an electroretinogram (I may have the wrong name here) - electrodes were placed on various parts of Fintan's head and he was then exposed to flash/pattern stimulus and lights and the results recorded.  He was allowed to watch a DVD when there was no stimuli present, but as this wasn't often he soon got fed up and kept asking to go back to his Mickey Mouse DVD!  The test took about 45 minutes, but felt a lot longer!  Fintan then needed a blood test; not an easy task, but after a bit of screaming and a few tears the job was done and we headed home.

We returned to GOSH on Wednesday morning for an early 7.00 am start.  Due to the cancellation of the first procedure of the morning, Fintan went down to theatre earlier than expected at about 10.00 am and was back in recovery by midday.  However, before he could return to the ward he had to stay in recovery for another hour or so because the incision in his groin (where the catheter to administer the drugs was inserted) continued to bleed and pressure had to be applied to the site. Fintan had the occasional moan, but was very tolerant of all the fussing around him.  Back up on the ward he had to remain semi-reclined in bed for 4 hours, but was able to watch TV and have something to drink and eat.

Taking it easy










Before treatment we had been made aware of all the possible problems that could occur, but post-procedure everything appeared fine; no swelling around the eye, no droopy eyelid and no immediate vision deterioration.  However, once they got a urine sample from him it became more clear why they had been chasing him for a wee all afternoon!  His urine showed a high glucose level so blood sugar levels needed to be checked; the result was high and it was then explained that the steroids given in theatre and the follow up steroid medicine can affect blood sugar levels and would need monitoring for several hours. Fortunately, we had come prepared for an overnight stay!

By midnight Fintan's blood sugar levels had reduced and remained low, so after a very long Thursday morning, and a brief visit from Elmo, we were allowed home after lunch.  Fintan has to have a daily blood sugar level test until Monday and as long as it remains stable he will then just continue with steroid eye drops until his EUA at the Royal London in 4 weeks time.

Killing a bit of time with the iPad

                                       Surprise visit from Elmo!

Mixed News

Fintan was back at the Royal London Hospital yesterday (23 Jan) for his EUA to see if the new tumour had responded to cryotherapy treatment.  The consultants had not been very optimistic that the cryotherapy would work, but I think to everyone's surprise the tumour has now started to respond.  However, another area in the eye, previously treated with a radioactive plaque and which the consultants have been monitoring for some time, appears to have relapsed and is slowly spreading towards the new tumour.  Further treatment is required on the new tumour, despite it starting to respond to cryotherapy, and also the relapsed area.

A radioactive plaque is not now considered the best option because of the size of the area to be treated and the damage to other parts of the eye it would cause.  After much discussion, weighing up the pros and cons of various treatments (plaque, intra-arterial chemotherapy and 3rd line systemic chemotherapy), we have opted for Fintan to have some intra-arterial chemotherapy (melphalan).

He had this treatment in his right eye about 3 years ago and we initially felt it had not been very successful, but the consultants have been been over his notes very thoroughly and explained that the problems he had post melphalan were caused by other factors.  Also, at the time Fintan had this treatment previously he was only the third NHS patient to have this procedure and it has now been fine tuned and a little more practised!

Chemotherapy drugs will be administered directly to the back of the eye via a catheter inserted in the groin and fed up to the ophthalmic artery; this should just be a day case but he may need to stay in overnight.  It doesn't cause the traditional chemotherapy side effects of nausea, hair loss or attack the immune system, but his vision may deteriorate temporarily, haemorrhaging in the eye may occur or a droopy eyelid (or all three!) but these symptoms usually clear over the following few months.

Fintan will have an EUA 4 weeks later and it will be decided then whether a second dose is required.  If this doesn't do the trick, we hopefully still have the options of a radioactive plaque or traditional chemotherapy; both have risks, but we have to try everything we can to retain some vision for Fintan.

A pancake makes it all better (well a little bit)!

Update

We returned to the Royal London Hospital on Wednesday (2nd) for Fintan's EUA and follow-up cryotherapy.  Unfortunately, the news was not so good; the tumour in his left eye does not appear to be responding to the first dose of cryotherapy, but a second dose was applied and Fintan is back in 3 weeks to see what is happening.  If the tumour is still not responding alternative treatment will be necessary; this has already been discussed with the retinoblastoma team and it is more than likely that Fintan will require a radioactive plaque.

Although Fintan has had this type of treatment before, it will be a lot tougher for him this time; the plaque is inserted in his left eye and is patched up for several days and, with no vision in his right eye, he will be in darkness and not allowed to leave his room for the duration.

Despite this worrying news, Fintan is still full of energy and keeping us all entertained!

Trust you all had a good Christmas and wishing you a Happy New Year!