Aria, Elizabeth and I left Singapore for the Netherlands on the 12^th of August. We had a big scare the day before when we went in for a routine round of Vincristine and Pentamidine at KKH which led to Aria developing a fever and putting the trip at a risk of postponement.

We got the go ahead to fly at 04:00 PM on the 12^th and had to be at the airport four hours later. The entire incident was stressful but having to make alternate arrangements would have been worse.

Aria handled the fourteen hour trip well sleeping through much of it, then playing/watching her shows and eating for the rest of journey over to Amsterdam.

We packed for coldish weather that is still expected in September but arrived in the midst of a what is locally considered a severe heatwave. The weather resulted in a little more shopping than we expected, making sure everyone (especially Aria) has appropriate clothes.

We had a few days before Aria’s first surgery and we wanted to pack them in with experiences she would enjoy before the impending procedures.

We managed to visit a couple of cafes, one at an old windmill that also houses farm animals, a second that has a sprawling lawn on the banks of a very scenic canal. We also visited the centre of Utrecht to take a look at some of the monuments, sights and also to do some shopping for groceries.

Between the 15^th and 19^th routine tests and scans were performed as part of the planning procedures, we also got a chance to meet the doctors and technicians from all the disciplines involved. Malaicha, my sister flew in from Dubai on the 17th to offer us additional support.

The AMORE treatment was set to start on the 22^nd, we took a short bus ride to Amersfoort on the 20^th to visit their famous zoo. Aria loved all her little outing in the week we had been in Utrecht.

On the 21^st afternoon Aria was admitted to the ward at Princess Máxima. Her surgery was performed at 08:00 AM on the 22^nd, it was tough to see her with her catheters in place and knowing that her eye was now gone. Aria would on occasion point to her left and say “eyes” which was heart wrenching but she was by and large unfazed, playing and eating while restricted to her bed. During the first surgery a feeding tube was inserted via Aria’s nose just in case she refused to eat, this didn’t last long however. Aria woke me up late in the night and yelled “no nose” and pulled it out, the nurses didn’t mind too much as long she was open to eating normally and the tube was not put back in.

MRI and CT scans were done on the 23^rd to make sure the mould and catheters were all secure in the desired location in preparation for the Brachytherapy.

On the 24^th she was moved to UMC a larger adjoining hospital for the Brachytherapy to commence. The Brachytherapy was very intense, 5 minute sessions every 2 hours for 3 days straight. Aria had to receive pain medication and other sedatives, she also needed to be strapped to the bed to make sure her movement was restricted during the 5 minute sessions. This was painful to watch and hard for Aria to endure, both Liz and I were allowed to stay in the room the entire time except when the pulses ran for 5 minutes. Her initial sedation was not enough to keep her calm and the dosages needed to be changed for days 2 and 3 to make sure it was more tolerable. On the 25^th she did a quick CT to ensure all the catheters were in the right place. These three days were the longest and most stressful of the entire trip. Aria was running a pretty high fever for much of this time, which the doctors attributed to being a common post-surgery event.

The last Brachytherapy pulses were finished in the early hours of the 27^th and we moved back to Princess Máxima the same day. The catheters were snipped to be shorter but would stay for two more nights, before a second and longer surgery for the removal of the mould and the facial reconstruction took place on the 30^th.

Aria was glad to finally be free of the catheters and a few hours after surgery she was open to eating and playing in her room. From here till the 11^th of September, we remained in the ward while the wounds healed (the orbital region was filled with muscle from her temple and a skin graft taken from her left thigh was used to cover up the region).

At this stage I must take the time to give special mention to the doctors and supporting staff at all three hospitals (Princess Máxima, Wilhelmina Kinderziekenhuis (WKZ) where her surgeries were done, the University Medical Center where her Brachytherapy took place) and also the staff and volunteers at the Ronald McDonald Huis where we stayed.

The facilities were world class to say the least. Princess Máxima was so well thought out and run, the hospital is extremely child friendly and minute details go such a long way to making the experience far less stressful.

Every doctor involved met us prior to the start of the procedures to explain their role and to see if we have any questions.

Each room consists of two separate areas for the patient and the caregivers, two bathrooms.

Child Life Specialists engage children to make them feel safer and understand what they are going through, they also help parents and family cope with what is to come and are there in person during procedures to assist the parents and the medical staff. They also guided us on what toys to buy from the local stores that in their experience children of her age found engaging. In addition they guided us on what kind of clothing to buy for her to accommodate the procedures with the catheters and the central chest line being challenging obstacles.

The kitchen and other service staff were very accommodating, always pleasant and very timely and proactive in every aspect of their job scopes.

The hospital is so well equipped with facilities to keep children entertained. Aria’s room overlooked a field with a few dozen horses right outside. I recollect there being 3 large outdoor play areas, 2 indoor areas, a fully equipped music therapy room, a children’s gym and an event space where special screenings/live concerts/other entertainment was made available on a few days of the week. The music room and gym have trained staff to help children learn a new skill or help with therapy. There is also a lab for older children where staff explain what they are going through with their specific condition.

The Ronald McDonald Huis Utrecht is a well equipped facility with friendly staff and dedicated volunteers who are present all day to look after the 23 families staying (although it never seemed crowded) there at the time. Every family has their own room and bathroom, with common kitchen housing six cooking stations and a laundry area with multiple washers/dryers. There is an outdoor play area and indoor toys/entertainment for the kids. The facility is about five minutes away from any of the three hospitals and this made our stay very comfortable.

As parents I do not think we could have asked for much more, our expectations were exceeded in almost every area at the hospital.

With all the procedures done and the go ahead to fly we left Utrecht for Amsterdam via car at around 06:30 AM on the 12^th of September. The letters from our doctor made getting through Schiphol quite simple for us. Other passengers however took six hours or so to get from the entrance to boarding the aircraft. We were on the runway for about four hours past departure time before finally taking off. The trip back thus ended up being around 18 hours on the plane, with Aria understandably quite cranky. We arrived on the 13^th in Singapore and were quite glad to make it home without any further issues.

Aria, Liz and I would like to thank a few parties in particular.

• The donors and family/friends who contributed to Aria’s treatment financially and also with their thoughts and prayers.
• Malaicha who left her family for a month and whose help was invaluable taking care of many things for us, she would also often gently nudge the staff to get Aria what she needs.
• All the staff at the three hospitals mentioned earlier and in KKH Singapore.
• The team at Ray of Hope.

We are very grateful to each and everyone involved.

There will also be a need for one or two more plastic surgeries in the future to fill in the orbit further. There’s also a silicone prosthesis to consider, but this is secondary to making sure her recovery goes on well.

We had six days off at home, Aria was back at KKH for chemotherapy on the 19^th of September. The doctors from both sides will discuss how much further chemotherapy is required. While there is no clear protocol for such a relapse, we are inclined to go with the longer treatment plan the Netherlands suggests.

I do not think we will ever be completely free of the worry of another relapse after what we experienced earlier this year. The doctors are quietly hopeful and we are glad that they feel Aria’s AMORE went off well. Scans will need to be done at regular intervals and we now carry on with chemotherapy and hope for the best.