Ben's Transplant Journey - Week 2

Click here to read week 1 of Bens Journey

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Week 2

Day 8
06.02.2016

This morning when we woke up, Bens rash had gone completely. He was feeling good and seemed to have plenty of energy. This was day 3 of the chemo treatment. The nurses again started the treatment at 12 noon. They increased the flow of chemo through his line and it now went in over 4 hours.
This evening Ben developed a rash again, as his body is reacting to the treatment. This time it appeared on his body and his arms. He was still getting the antibiotics, so again the nurse just wanted to keep a close eye on it. They were not concerned.
Ben is still drinking ok but we can slowly see that he is eating less. Plenty of playing again today for Ben. We are trying to keep things as normal for him as we can. Nothing more to report for today!!

Why do I need a spoon Daddy??

Day 9
07.02.2016

Ben had an unsettled night last night. The nurse decided to give him IV fluids during the night. They noticed from the feeding chart, that we have been keeping, he hadn't drank as much yesterday as he had the previous few days. They just wanted to make sure he stayed well hydrated during treatment.
Bens oxygen saturation levels were dropping a bit while he was in a deep sleep. This was unusual as these levels have been fine up until now. The nurse put nasal prongs on him and gave him a trickle of oxygen to help with this. Thankfully his levels have come back to normal this morning. This is probably relating to the chemo treatment as it slowly kills of his cells. The red blood cells are the ones which carry the oxygen around his body. The nasal prongs have now been removed for today.
He really seems to be getting fussy with his meals now. He wasn't too interested in his breakfast this morning. We just have to keep offering the food to him even if he just takes small amounts. Its important to maintain his weight.
The play specialist, Laura, brought in some paints for Ben this afternoon. He loved painting, or should I say making a mess!! That kept him occupied for a couple of hours. We are allowed to stick the paintings on the walls in the room, to brighten the place up a bit!! We had some job cleaning up!!

Leonardo da Vinci

Day 10
08.02.2016

They stopped the antibiotics today as Ben seems to be coping well with the treatment now. He had no temperature in the last few days. That nasty rash seems to have gone away also.
The daily blood results came back from the lab this morning. The doctor came in to inform us that Bens Haemoglobin (Red blood cell count) was low. She has ordered blood for him and he will have a transfusion later this evening. The need for oxygen on Saturday night made sense to us now.

Ben has already had 3 blood transfusions in his short life so far. The first was when he was 6 weeks old. Back when first we found out that Ben required a blood transfusion, we were obviously quiet worried. We now know that it is a pretty straight forward procedure. Having been diagnosed with an immune deficiency, its now clear why he required these transfusions.
So this news today was not a shock to us because of his past and also due to the amount of blood Ben has already given each day since we arrived, for tests/levels. The doctor also reassured us that this was common for patients to need a transfusion during treatment. And said that this would not be his last transfusion while he was here.
The blood was infused over 3 hours just as Ben went down for the night.

Day 11
09.02.2016

The difference in the colour of Bens skin this morning is unbelievable. His skin is a healthy red colour. This is all down to him receiving the top up of red blood cells. He had a comfortable night again. He only wakes up at night when the nurse comes in to do their observations on him. Which is every 2/3 hours but he goes straight back to sleep when they are finished.
Bens bottom has become very red and sore today. Because he is still receiving the chemo, we have not been able to use any creams to prevent this soreness from happening. He is in a lot of discomfort, god love him. They have given him some pain relief for this, hopefully that will help!! We can start using creams again on Thursday, this day cant come quick enough, its dreadfull to see him like this.
Plenty of nappy changes and letting as much air as possible at it should help!
He had good fun playing with the bubbles today, he drowned the place!! It took his mind off his sore bottom for a while.
The pain relief has started to work and he isn't in as much discomfort as earlier. He's a tough little cookie!!

Splish Splash

Day 12
10.02.2016

Somebody, somewhere, is doing something really special today!!

Today we are both feeling extremely lucky and grateful!!
As we sit here in Newcastle caring for our little son. We cant help but think about the man or woman who, somewhere in the world, is giving up their precious time to donate a small amount of their stem cells.

We have been told that they are donating today so it will arrive here in time for the transplant on Friday. They are not told anything about where their cell donation is going or who its going to. Just as we don't know anything about the donor, other then he or she is a healthy match for Ben. In fact they both have a perfect tissue match. It is strange that he or she might never know what they have done for us and that we may never be able to thank them in person. Not that a thank you would even be enough. We will be ever in debt to this wonderful person.
Its an unbelievable feeling knowing what this persons donation is going to do for Ben and our little family.
The donor was found through the Anthony Nolan Register, which is a UK based charity that saves the lives of people with blood disorders, by matching remarkable people willing to donate their bone marrow (or stem cells) to patients in desperate need of a transplant. They also do vital research to make stem cell transplants as successful as possible.

Ben is having a pretty good day today. He is still smiling and charming all the nurses. The cleaner said she spends to much time in our room because she cant get enough of Ben. He does really brighten up when she comes into clean each morning. She's lovely!!
This is his last day of chemo. He has been doing rather well with the treatment so far. The nurses have said that the full effects of the chemo may take 3 or 4 days to really impact on Ben. We will deal with that when it comes!!

We have been able to skype our family back home each day. Its lovely for Ben to see his grandparents even if it is only through the ipad. He blows them kisses through the screen, very cute!! They are planning to come over in the coming weeks to visit. We can hardly wait to see them already and we have only been gone less then 2 weeks!!

Day 13
11.02.2016

One more day till transplant!!
Ben doesn't have much energy today. He is pretty down in himself. This is understandable after all his little body has gone through in the last week. Thankfully today is just a rest day for him. Not a whole lot will be happening. Bloods have been checked this morning and all looks ok. Everything is in place for the transplant tomorrow morning.
Over the last few days Ben has started to pull himself up to a standing position using the sides of his cot. This was fantastic for us to see. The determination in his face!! He is delighted with himself, loves all the praise!! He wants a round of applause every time he does this, he claps for himself too!! He's so funny!!
I think he is showing us that he is going to walk out of this place when the time comes!!

Look at me!!!

Day 14 - Transplant Day
12.02.2016

Today is the Day!!

As I always say; "Nothing is ever straight forward" and this morning certainly proved that statement correct!!

Up until now everything has gone pretty much to plan. No surprises, everything was on schedule. With Bens transplant due to start this morning at 11am, the nurse came in to take his daily blood sample at 7am. This was to be taken from his central line as normal. However, today the nurse could not draw blood from the line. It had somehow got blocked!! She said this does happen from time to time and they have a liquid solution that should help to unblock it.
She started to infuse this solution slowly through the line and said she would check it in 2 hours time again. Unfortunately this wasn't successful. It was blocked and could not be used.
Disaster!!!

The doctors were called. They decided to try and get a cannula into one of Bens veins, in his foot. As I previously said, this is a really difficult task to carry out on Ben. His veins are just so hard to access. We knew this from previous experiences, and explained this to the doctor.
He understood, but said that they would have to try. If this was successful, the plan was to give the transplant through this cannula.

They managed to get a cannula in, but it was in an awkward place. Right where his ankle rotates. We weren't confident about this. Sure enough when Ben moved his foot, the cannula was moving. Only 30 minutes later when the nurse tried to flush this new cannula, it was blocked, it had come out of the vein. Probably due to Ben moving his foot but him being a baby this obviously could not be helped. It was now 11.30am.

The only option was to get Ben on the list for theatre again. He would need another central line inserted. With it being Friday we knew if he didn't get to theatre this afternoon he would probably have to wait till Monday. This posed all sorts of risks for Ben, as he now had literally no immune system at all because of the chemo treatment he just had. It had killed all of the few white cells that he had. He required a lot of medication throughout the day and night. He really needed this line!!
We were anxious to say the least. We could also see that the doctors were concerned.

Ben had been fasting since 7am because of the possibility of surgery. He was unsettled because of this, but he couldn't have any fluids, just incase he was called. It was a long few hours for us!! Thankfully the doctor came in at 1pm and told us that Ben is on the list for surgery this afternoon. He reckoned he would be called at approximately 3pm. We were so relieved.
Sure enough the call did come at 3pm and we went through the same process again as we did on day 3. The plan was to remove the original blocked line from the right hand side of his chest and insert a new line into a new large vein on the left hand side of his chest. Again we found ourselves waiting and praying that all would go well in surgery.
Ben was brought down to the recovery ward about 90mins after. All went well again thank god. He was sore and tender around his chest area and was prescribed morphine to help with this.

We got back to our room at 5.30pm. Even though we have been stuck in this room for the past two weeks, It was actually nice to be back, because we know Ben is safest in this environment. Due to the fact his, small/weakened, immune system that he once had was now completely wiped out. He was now at his most vulnerable and the risk of infection has therefore increased.
The nurse then took blood samples from the new line and sent them to the lab for tests.
She then sent for Bens new donated cells to be brought onto the ward!!

At 6.30pm on Friday the 12th of February 2016 is the moment when our precious little boys life begins again.

The doctor kindly asked us would we like to start the pump to begin the infusion of Bens new cells. The care assistant was in the room taking pictures, capturing that special moment. They really made it a wonderful experience for us as parents. It truly is a significant milestone in Bens life.

Ben slept through it all, mainly because of the pain relief he was on after surgery. The transplant of the new cells went in over 2 hours. It seems like such a simple thing after all he has been through. I would compare it to a blood transfusion.
Its a strange feeling for us, because the build up to this point has been so tough for Ben undergoing the chemo and all that went with it. This seemed to be, for want of a better word, an anti-climax! But simple is good for us right now, believe me!!

There was a small amount of fluid in a blood bag. This contains the vital stem cells that Ben required. 58ml of fluid to be precise. Seems like a tiny amount and it looked like a tiny amount! But this small amount of cells was going to transform Bens life. Its amazing really!!
They were able to extract the exact amount of cells that Ben requires from the donors donation. They told us that they have some more of the donated cells stored, incase Ben requires some more at a later stage, which is rare. It is absolutely incredible what they can do!!

Along with the bag of donated cells was a envelope addressed to the patient, which in this case is Ben. We opened it to find a beautiful card, a "second" birthday card, from the Anthony Nolan Charity. It was a lovely surprise, and a nice touch.
Inside it read; "Today is a bit like being given a second birthday, and everyone at Anthony Nolan is so pleased to be part of it. We are with you all the way - on the days worth celebrating and everything in between." Inspiring words!! The card actually sums up perfectly what this transplant will do for Ben. Even though he is still so young, it will give him a new start. A new beginning!!

Card we received from the Anthony Nolan Organisation

Wow, what a day it turned out to be!! It really was a rollercoaster of emotions. Thankfully, in the end, everything worked itself out ok. We just have to wait now for Bens body to accept the transplant of the new cells. This could take anywhere between 10 to 15 days. Just one day at a time for us now.

Ben continues to jump over all the hurdles that are put in front of him during his brave journey.

What a little fighter Ben is

Read Week 3 Here

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