Ben's Transplant Journey - Week 1

From The Beginning

Firstly I will try to give you a brief summary of how we have reached this point!

Our little son Ben was diagnosed with a severe immune deficiency in May 2015.

This was first noticed when he was admitted to Crumlin Childrens Hospital with what turned out to be a common flu virus. After a long few days Ben was not getting any better, he was actually getting worse. The reason for this was that Ben unfortunately could not fight off this virus due to his weak immune system. He ended up in intensive care for 2 weeks. The virus developed into a really bad infection of pneumonia which resulted in Ben having to be ventilated. Thankfully he got through this, with the help of the wonderful staff in Crumlin. He was in hospital for a total of 9 weeks.

After some follow up appointments with Dr. Ronan Leahy, who is a Consultant in paediatric immunology and infectious diseases in Our Lady's Hospital Crumlin, he decided to arrange an appointment for Ben to see his colleague in Newcastle, Professor Andrew Cant.

During that appointment, which took place in Crumlin, we were first told that Ben may need a Bone Marrow Transplant. This particular transplant was only performed in the UK. (Great Ormond Street, London or The Great North Children's Hospital RVI, Newcastle).

Professor Cant wanted to review Ben with his team in Newcastle, before making his final decision for him. He arranged an appointment for us to travel over in December 2015. Ben spent a week as an out patient in the dedicated transplant unit of  The Great North Childrens Hospital. He had daily appointments with all of Prof. Cant's team. We were shown around the ward, which really was fantastic.

At the end of the week the team all met together to discuss Ben. They came back to us with their recommendation for what they felt was best for our son. This was as we expected, a Haemopoietic Stem Cell Transplant which is basically a Bone Marrow Transplant. They also told us they had a donor on the register who was a perfect match for Ben.

Ultimately it was up to us to decide what we wanted for Ben. Up to this point Ben is attending Crumlin every 3 weeks to receive an infusion of Immunoglobulins (They help fight against viruses and infections). It just gives Bens weakened immune system a boost. Long term, this infusion could be carried out by us at home, after we got the appropriate training. This would then change from every 3 weeks to every week.

Having had time to think about it all, weighing everything up, and looking at what may be in store for Ben in the future, we felt it was best to agree with the experts and we decided to go ahead with the transplant. Getting this transplant will give him a new and stronger immune system. We hope it will give Ben a better quality of life, free from nasty infections which for him could potentially be very serious.

So after a very short two months since we were first here in December, the three of us are now back in the transplant unit, of this fantastic hospital. Feeling positive and ready for a tough road ahead.

We have decided to write a weekly blog to document Bens brave journey through the various stages of his Bone Marrow Transplant. We also want to share our experiences throughout these few months. Hopefully someday we can show this blog to Ben for him to read and we'll all look back on this journey we made together. We also want to keep our family and friends up to date on how Bens treatment is going!

Ben enjoying the swing, a week before we left for Newcastle

Week 1

Day 1
30.01.2016

We got a taxi from Newcastle airport to the hospital, which was only 10 minutes. We arrived to Ward 3, Stem Cell Transplant Unit, at 11.30am. Ben was brought to his new room where he would be spending the next couple of months. Our first impression was that the room is quiet spacious.
From this point on he is in Red isolation. This meant that he could not leave his room. The air in the room is controlled, so its filtering in clean air every few seconds. It is to lower the risk of Ben catching any infections or bugs while he is most venerable.
We have to scrub our hands for 3 minutes every time we enter the room. The nurse showed us how to do this correctly.
We can not kiss Ben at all from now on, as this could easily pass infections to him at this time. This at first seemed really hard as Ben loves his kisses and cuddles!!
The nurse went through everything with us and answered any questions that we had. There was a lot to take in all at once.
The room was full of clean toys for Ben to play with. Each toy has to be cleaned, using disinfectant wipes, when it comes in contact with the floor. In fact anything that comes in contact with the floor or has come in from outside Bens room has to be cleaned.
There is a pull out bed in the room for one parent to sleep over with Ben. We also have our own toilet and shower room. We have Sky TV with all the channels which is great for the cartoons for Ben.
Nothing was needed by the doctors on day 1. It gave us a chance to settle in. Mam is staying with Ben for his first night. Dad is staying in the hospital accommodation, this is shared with another family who is also on ward 3.

Red Protective Isolation Guidelines

Day 2
31.01.2016

Ben had a surprisingly good first night in his new surroundings. He woke up smiling as always. Today was again just a settling in day. Nothing had been planned for Ben till Monday. The nurses just took a few observations of his temperature etc. throughout the day.
We are still getting used to all the hand washing and sterilising.
Ben is delighted with his new toys and even more delighted with all the coming and goings of the staff to our room. He loves the attention!!
The nurse showed us how to bath Ben while he is going through his treatment. This involved using special creams and moisturisers. We have to bath him twice daily. Ben loves the bath so this shouldn't be a problem. We also have to shower every morning!
Bens clothes are washed daily on a 60 degree wash. And his bed clothes are changed at least once a day. We have plenty to keep us busy!
Ben had been feeding well before we came. We were warned that he could go off his food during treatment, so we are keen to keep him interested in his food. The menu is great here, and some of Bens favourite foods are on the menu (Chips!!) Dad is staying with Ben tonight, we have decided to alternate the nights we stay in the room with Ben. Just to give each other a little break and a full nights sleep.

Ben playing with his new toys

Day 3
01.02.2016

Once again Ben had a great night sleep. He is settling in really well. Today he is due to get a central line.

The purpose of a central line is to deliver fluids and drugs easily to him over a long period of time. Blood can also be taken from this line to analyse his levels. The line is inserted through the skin into a large vein that then feeds into a larger vein sitting above the heart.

This is going to make life far easier for Ben and for the doctors. It is so hard to get blood from Bens veins and its not a nice experience for anyone when they have to do this. He is scheduled for this procedure at 2pm.

We were called for surgery at 1.30pm. Dad went in with Ben when he was getting the general anaesthetic. We then waited in the parents room. They told us it usually takes an hour to an hour and a half. This unfortunately wasn't our first time experiencing this with Ben but it doesn't get any easier each time. One hour feels like five hours. 

The surgeon came to see us after the procedure. He was happy that all went well. Ben was moved to the recovery room and we were then allowed down to see him.

He was quiet sore and tender for the rest of the evening, the nurse gave him pain relief for this and he settled down for the night.

We are so glad this part is over and it was successful.

Central line

Day 4

02.02.2016

Ben is back to himself today. He doesn't seem to mind the line coming from his chest area. He is interested in the connectors of the line, we have to watch that he doesn't pull them. He had bloods taken from the line today. This was a piece of cake compared to normal. These bloods will now be taken every morning to monitor Bens cells. They also check for any viruses that may be in the blood. They can then treat any such viruses if there is concern.

Bens main doctor came in to check on him that morning. He is not fond of the doctors to be honest!! He is happy with everything up to this point.

We gave him his daily bath and  he had plenty of play time. A play specialist comes in to play with Ben for an hour each day. She is great with him! This gives Mam and Dad a chance to get a coffee together. Ben is still eating well. He loved the little pot of ice-cream that the health carer gave him this evening!

Hello!!

Day 5

03.02.2016

Today again was just a day of monitoring Ben. His nappies now have to be weighed every time we change him. This is just to monitor the amount of output compared to his intake. We also have to note each piece of food he eats and every ml of fluid he drinks. A dietitian can then look at his intake and make sure he is eating and drinking well.

All food has to be individually sealed to prevent bacteria entering food when opened. For example Ben can not have Ready Brek (his favourite) because it can not be sourced in a small one portion packet. He is eating one, individually sealed, Weetabix instead. 

Fruit is another issue. Only fruit that can be pealed, Ben can have. So no strawberries, raspberries, etc. Bananas and apples are ok. This is called clean eating. This is to help reduce the risk of picking up bugs through food. Again this is all new to us!!

The health carers are really helpful when it comes to meal times. They do their very best to get what Ben likes and they are available to make anything for Ben 24 hours a day. All food is cooked fresh when ordered. Ben is already trying lots of new foods!!
We gave Ben his daily Bath and we now have to weigh him each day to monitor his weight. We do this before his bath.

Foods to avoid

Day 6

04.02.2016

Today Ben is scheduled to start his Chemotherapy treatment.

Personally when I hear the word Chemotherapy, I think cancer!! I also think elderly people. Ben is only 15 months so this was not going to be easy for any of us. It is obviously not a nice treatment to go through no matter what your age.

The doctors explained that Ben may experience some side effects from this treatment. Mucositis is a common occurrence from Chemotherapy. It causes sores in the mouth and throat. This is impossible to prevent but it can be controlled and medication is available should Ben require it. Nausea and Vomiting may occur also. Hair loss is another common side effect from chemo. Ben has very little hair anyway so this wont be a huge issue for us!

Researching all this information is tough to read and it wont be easy for us to see our little baby going through this. As another Dad on the ward said to me today, "If we knew everything that our kids would go through over these next few months, then we would never start this process in the first place". This is so true!! We know this treatment is for the best for our son, and we just have to be there for him throughout it.

The nurse started the infusion of chemo at 12 noon today. This again went through his central line over a 6 hour period. She said it usually takes the kids 4 to 5 days to feel the real effects of the chemo.

Around 5pm we could see that Ben was very lethargic and just wasn't himself. Obviously his little body was going through some changes already. He was still trying to play with his toys but eventually he gave in and fell asleep in Mammys arms.

The infusion went in slowly over the 6 hours and the nurse checked Bens temperature, heart rate and blood pressure every half hour. Kids usually have a spike in temperature while getting treatment but was all fine today.

Ben feeling tired after his chemo

Day 7

05.02.2016

Ben had a great night last night. He was back to his happy self this morning. This was great for us to see!! The days are always easier when you see that smile of his. The nurse gave him his second dose of chemo at 12 noon again.

This afternoon Ben had a high temperature, this was expected and the doctors had antibiotics ready to give him when this occurred. The antibiotics worked quiet quickly and his temperature calmed down.

This evening we noticed that Ben was getting a rash around his head. This got really noticeable  around 6pm. It was just on Bens head and didn't appear on the rest of his body. Again we were warned that this was a common reaction to the chemo over the first few days. The nurse just wanted to keep a close eye on it. She said the antibiotics that he started today for the high temp would also work against this rash. It was not irritating Ben and he didn't seem to be bothered by it, which was good.

Everything else was going ok today and Ben was well in himself which is the main thing.

Rash at its worst

That is week 1 over. Everything is going according to schedule so far. It has been a really quick week for us, probably because so much has been happening each day. The ward staff are so helpful, they cant do enough for us!

Ben has settled in really well. The nurses love him, he is charming them all!! We are both getting a good night sleep every night which is great. Next week is another full week of chemo for Ben. With the Transplant scheduled for Friday the 12th.

Blog for week 2 to follow!!

Ben is an inspiration to us






Read Week 2 Here