All posts by Ed

Happy New Year, Joseph is 4!

Highlight: Joseph enjoyed Christmas at home and celebrated turning 4 on 1st January.

Joseph admiring his birthday cake


Joseph doing some Christmas craft

Prayer request: Please pray for Joseph during his next lumbar puncture on Monday (11th January) when he will receive chemotherapy in his central nervous system. Please pray for grace for Joseph as he fasts, for safety during the procedure and that the treatment would be effective.


Two years of grace

Thank you for praying for Joseph during his lumbar puncture last Monday. The day went very well. This time Marie took Joseph and he enjoyed having some extra time with his Nanna.

We are also giving thanks once again for the Lord’s answered prayer in our time of great need two years ago when Joseph was diagnosed with leukemia and a life-threatening infection (Monday 21 October 2013). People around the world prayed and God answered.

Before they call I will answer;
    while they are yet speaking I will hear.

Isaiah 65:24

A Little Sister

Prayer request: Please pray for Joseph during his next lumbar puncture on Monday (12th October).

Highlight: Joseph has been enjoying his new little sister.

On 21st August we welcomed Selah Marie into our family. Joseph and his brothers were delighted to learn they had a little sister and wanted to visit her in the hospital immediately. We didn’t want to leave Joseph home while the others got to meet Selah, so we talked to one of the midwives about getting a mask for Joseph so he could safely enter the large maternity unit. She was very helpful and found a mask that would work. However, a little later she came back to us and said, “I’m just a bit concerned about Joseph coming in the main entrance and having to go through so many people, even with the mask. I can let your family in another door which is right next to your room and so Joseph won’t be exposed to anyone else.”

Joseph was beaming as he came in and saw Selah. It was such a special event to be able to experience as a family and we were so grateful to the midwife for making it possible.
Family visit to Selah.001

While Joseph spent the first six weeks of Ezra’s life in the hospital, not really aware of his new little brother, this time he has been able to really enjoy his newborn sibling. He loves holding Selah and making sure she has everything she needs.

Joseph holding Selah

Thank you for your continued prayers for Joseph. Just a few weeks before Selah was born he had a fever and we had him checked at the hematology unit. The blood test showed that his neutrophils were high enough for him to fight the infection himself and we thanked the Lord for again sparing us a stay in the hospital.

Prayer request: Joseph has his next lumbar puncture on Monday (12th October) to receive chemotherapy in his central nervous system. Please pray for grace for Joseph in his fasting, safety during the procedure and that the treatment would be effective.

Behold, the eye of the Lord is on those who fear him,
    on those who hope in his steadfast love…
Our soul waits for the Lord;
    he is our help and our shield.
For our heart is glad in him,
    because we trust in his holy name.
Let your steadfast love, O Lord, be upon us,
    even as we hope in you.

Psalm 33: 18

A liver, a lake and a riverdance

Thank you for praying for Joseph during his most recent lumbar puncture (on Monday 27 July). He coped very well with the fasting and the procedure.

After a very light breakfast, I took Joseph to the hospital for his routine blood check to make sure his counts were at the levels required to proceed with the lumbar puncture. Everything was within an acceptable range so after a short time I took Joseph back home to have time to play before his procedure.

Joseph was understandably irritable, feeling hungry and tired. This meant he required some extra attention from Kate and a lot of grace from his older brothers, but the time at home helped break up the day and before long it was time to go. This time Kate took Joseph in for his procedure, Kate’s first experience of doing so. Joseph was excited about this novel situation and chatted non-stop from when he got into the car to when he was taken into theatre.

The procedure went quickly and when Kate was called in to recovery, Joseph was sitting happily on one of the nurse’s knees, explaining to her why cats don’t need to wear sunglasses. Joseph wanted to stay and chat but was eventually persuaded to go home. As he does with me, when he got to the car park he wanted to ‘race’ Kate. He dragged a waddling (38 week pregnant) Kate to the car, much to his amusement. Kate drove home thanking God for His incredible grace to Joseph, once again.

The next day the clinic phoned with the results of Joseph’s most recent liver function test -these were very encouraging. Joseph’s bilirubin was now down to a level at which the doctors felt happy to increase his chemotherapy. Joseph is still on a low dose to allow his neutrophils to stabilize. However, we felt encouraged and very thankful that the Lord had allowed Joseph’s liver to recover from whatever was causing him to be jaundiced several weeks ago.

We are also very thankful for the period of good health that Joseph and all the boys have enjoyed over the past weeks (following several weeks of fevers, colds, coughs and tummy bugs). This meant that we were able once again to go and enjoy a short break at the NICFC retreat centre, Daisy Lodge. During this stay Joseph got to try his hand at canoeing, a first for all our boys.

By tying the canoes in pairs, our guide from the centre made sure there was no chance of getting soaked by the lake water (he couldn’t do anything about the rain!). This meant it would be safe for Joseph and the other immune suppressed children participating.

Ed, Nanna and boys going canoeing
Ed, Nanna and boys going canoeing at Castlewellan Lake

It was a very exciting experience for the boys and one which we would not have been able to enjoy together (Kate and Ezra watched from the shore) had it not been for the Lord’s special provision of Daisy Lodge and its wonderful team of staff.

Another amazing provision from the Lord has been that Joseph and his brothers have begun taking Irish dancing lessons. Joseph has been able to benefit from this experience thanks to a wonderful teacher who was willing to come and teach the boys at home. They have now had several lessons and enjoy burning off excess energy before bedtime with a lively Irish dancing session, as inspired by Riverdance. It especially delights our hearts to see Joseph, once so ill, joining in and developing his sense of movement and rhythm. Here is a short video of Joseph doing some “freestyle” dancing while his brothers pratice their “threes”.


Praise the Lord!
Praise God in his sanctuary;
praise him in his mighty heavens!
Praise him for his mighty deeds;
praise him according to his excellent greatness!
Praise him with trumpet sound;
praise him with lute and harp!
Praise him with tambourine and dance;
praise him with strings and pipe!
Praise him with sounding cymbals;
praise him with loud clashing cymbals!
Let everything that has breath praise the Lord!
Praise the Lord!

Psalm 150

An Ear and a Prayer

Prayer Request: Monday 27 July 2015 – Joseph has one of his lumbar punctures with a preventive chemo treatment of his spine. Please pray for him to handle the treatment well and for it to be effective.

photo 5

Since the last update many things have happened and we are happy to report that Joseph is doing well tonight but there have been a few ups and downs along the way.

The liver function test that was done the week after the last update showed improved liver function but his neutrophils bottomed out. So he was taken off all chemo for a week. That was on a Wednesday. On Friday afternoon – about the time the boys go down for a nap, Kate came in to my office at home and said, “Joseph has a fever.” That phrase causes an automatic action plan to go into force. I was on a call with my team and had to excuse myself. Then I called the hospital to tell them what was happening – that number is on my speed dial. They told me that we should bring Joseph right away, bring our suitcase and plan to stay. We keep a packed suitcase by the door for just such a situation but it needed to be refreshed with a couple of things. I got the car ready and got Joseph ready to put in the car. While Kate was refreshing the suitcase she was explaining to the other boys what was happening and encouraged them to pray for Joseph.

Just as Kate was bringing Joseph out to the car, Moses (Joseph’s five year old brother) came up and said, “Mummy please check Joseph’s temperature. I have been praying.” So Kate checked it with the ear thermometer. The first ear was no longer above the fever threshold. She checked the other ear and it was still above the fever threshold. To this Moses said, ” OH, I have to go and pray for that other ear!”

I got Joseph strapped into the car and took him to the hospital. Upon arrival they took a blood sample and his vital signs. The results of the neutrophils were a huge surprise: 4.1. This was the highest they had been in over a year. Just two days before, his neutrophils were 0.3. It was expected, with that very low result on Wednesday, that he would be at 0 with an infection running wild. When I looked at the nurse in disbelief at the number 4.1 she smiled and said, “his body it doing what it should do – it is fighting the infection”.

Then the next surprise. Joseph’s vital signs showed his temperature to be below the fever threshold. When the doctor examined Joseph she found an infection in that stubborn ear that Moses was praying for. Suddenly our whole situation changed. Joseph did have an infection but his body was fighting it and he did not have a fever. So the decision was made to provide us with an oral antibiotic and allow us to go home and monitor Joseph’s progress.

At this point it was time to close the clinic so we were invited to come and wait in the Hematology ward until our medicine came. As we walked down the corridor to the ward, one of the nurses asked me how I felt about coming back to the ward where Joseph had been initially diagnosed and treated. I told her that it was a strange feeling and I was not sure if I could really explain it, but I just had a great sense of peace and comfort. We had been so well cared for in the past and were being cared for so well now.

While waiting for the medicine, we met many nurses who had cared for Joseph a year and half ago. They were all thrilled to see him with a full head of hair and looking well. When the antibiotics arrived we were free to go home. On the way Joseph fell asleep in the car, making up for the nap he had missed. When we walked in, Joseph was ready to play and Moses was so excited to see Joseph home and without a fever. His prayers had been answered – even for that stubborn ear.

But Jesus said, Suffer little children, and forbid them not, to come unto me: for of such is the kingdom of heaven. Matthew 19:14 KJV

Moses’ prayers for Joseph reminded me of when Jesus was approached by a group of children. The disciples try to keep them away from Jesus but he tells them to let the little children come to him. Here Jesus is not talking about heaven only being for children, but for those who really love and trust Him the way any child would. Jesus is saying the same thing in regard to you today – He is telling everyone to not hinder their approach. You don’t have to be pure – He will handle that. You don’t have to know theology – you just have to know Jesus and Heaven will gladly receive you.

On The Edge

Joseph Feeding a Giraffe
Joseph Feeding a Giraffe

For the past three weeks Joseph’s neutrophil results have been stuck on the edge of the treatment threshold. His chemo treatment was reduced to allow him an opportunity to recover but he has continued to remain right at the edge. Now this can be caused by many things – one of which is fighting off a low level infection of some type.

However, Joseph remained active and to all appearances healthy and vibrant – that is until Monday when we began to notice that the white of his eyes appeared to be a bit yellow or jaundice. Kate and I were not really sure if was just our imaginations or if his colour was off. So late Monday night we called to the pediatric haematology ward at the hospital. They always tell us to call – day or night  – if we ever have any concerns so we called and they worked with us to determine he was not at immediate risk and could sleep at home and come in for a check up in the morning.

When I took him in, his blood results showed that his neutrophil count was still on the edge and when they did a liver function test those results too were right on the edge of the treatment envelope. It was clear that his liver was not functioning at 100% but not serious enough to take any action at this stage. So he is scheduled for another liver function test next week and a possible ultrasound scan of his liver.

For those who have so often prayed to Joseph, we would request that you ask Jesus to restore Joseph’s liver function to 100% and his neutrophils back up to the normal range.

Of course as parents anything that could impact Joseph is a concern for us. But when we got up on Tuesday to take Joseph in for a check up we were struck again at what a miracle each day of life is for all of us. 

Last Friday the NICFC (Northern Ireland Cancer Fund for Children) organised a special evening at the zoo. This was only for children and their families who are being treated for cancer or a life limiting condition.  We were not sure if we would be able to go, but at the last minute we gathered the children in the car and off we went. Joseph never gets in the car with the whole family so he said “I get to go?” , “I get to go with everyone?” Then the questions started flowing – “where are we going?” to which we replied – “you will see very soon, it is not far away.” Then as we arrived at the zoo and began to drive into the driveway, Joseph said, “THE ZOO! I AM GOING TO THE ZOO!” and he began to giggle with pure joy.  But none of us realised what NICFC had in store for us. It was not just a special time to come safely to the zoo, but there was a helicopter, fire engines, motorcycles, classic cars, food, games, clowns, jugglers and treats upon treats. Then we found that the children were invited to feed the giraffes. So Joseph got to hand feed a giraffe. Then we found a brand new children’s play park in the zoo and the boys loved it. Joseph was just running from one climbing frame to another faster and faster, smiling and laughing. Then when it was time to go home, as we passed through the exit gate men were there to give the boys each a gift packet. When we got in the car they found  sweets and a wonderful stuffed toy as their good bye for the evening. As we drove home the boys were thanking God for such a lovely time.

All of this was such a picture of the overflowing love and generosity of God. We almost missed the wonderful night at the zoo – shall we miss the incomparable delights of eternal life?

What then shall we say to these things? If God is for us, who can be against us? He who did not spare his own Son but gave him up for us all, how will he not also with him graciously give us all things? Romans 8:31-32

The question is not whether God loves and cares for us – it is are we willing to receive what He is offering? Not just forgiveness from sin but adoption. Not just freedom from the power of sin but the freedom to do what is right and delight in it. Not just squeak into the gates of heaven but to have the gates thrown open and received as a child in whom He delights.


A Hair Cut

Thank you for praying for Joseph during his most recent lumbar puncture (27th April). Joseph did well with his fasting and recovered quickly from the procedure.

After he had his initial blood test that morning, Joseph asked for something new – could he could go home to play with his brothers?

A quick phonecall later and Kate and the boys were hurrying to finish up their snack and hide all the food before Joseph arrived back home. Joseph then spent several hours building with duplo and having stories read to him.

Joseph with duplo

Then it was back to the hospital for his procedure, from which he recovered very quickly. He spent the evening outside with his brothers, running happily in the rain with his umbrella.

photo 2

Joseph had his weekly/fortnightly check up at the hosptial on Wednesday (yesterday) and the blood test showed that his neutrophils had dropped to below the minimum therapeutic level, making him very susceptible to infection. However, we thank God that despite one of his brothers having an ear infection (resulting in a perforated ear drum), Joseph has stayed healthy and well. His chemo dosage has been reduced for a week to allow his immunity to increase.

A hair cut


Kate is getting ready to have her hair cut!

She plans to donate at least 7 inches of her hair to Little Princess Trust, a charity which provides wigs for children in the UK and Ireland who have lost their hair due to cancer treatment. For anyone interested in sponsoring this event, Kate has set up a means of donating online through Just Giving.

Any money which is donated will go to the Northern Ireland Children’s Cancer Unit Fund (NICCUF), the official charity of the Children’s Haematology and Oncology Unit in Belfast where Joseph has received his treatment since being diagnosed on 21 October 2013.

The God of all Comfort

Prayer Request: On Monday 27th April Joseph will have a lumbar puncture to allow a protective chemo treatment of his central nervous system. Joseph has to fast for most of the day and then have the procedure.  As we have said before we are convinced that he does very well on these days due to your prayers. Thank you for praying for Joseph.


After our last update Joseph had his lumbar puncture. It was a long day of fasting for him. Several times he said “Daddy, I’m hungry,” and I replied, “Well son, I am hungry too but we can have something nice in a bit.” Fortunately it never got beyond that exchange. Then in the last hour of waiting he climbed into my lap and fell asleep. Joseph awoke long enough to see all the medical staff just before he went under anesthesia.  This day there was an increase in the dose of chemo as Joseph has grown. I was reminded that though uncommon there was a risk of seizure. However, after Joseph woke up from the procedure he was alert and reminding me of my promise of food. A kind nurse provided a small portion of ice cream and Joseph was thrilled! Once the ice cream was done he was ready to go home and play with his brothers.

So we went home, and he immediately started running about with his brothers as Kate and I just stood there and marvelled. We could see a bit of the yellow/orange antiseptic (iodine), that covered about half his back, showing from time to time as he ran. You would never guess he had just  had a lumbar puncture.


Now that Spring is here, Joseph really likes to be outside. He enjoys bouncing on the trampoline and we are so pleased to see the level of body control he is acquiring as he does this.


In addition to bouncing and playing with his brothers Joseph also likes to do a bit of painting outside on nice days. I believe that Joseph was working on a mountain landscape this day, though you can’t see it from this angle.

Since our last update Joseph has been twice exposed to chicken pox and once to scarlet fever despite all the efforts we make to protect him from potential infections. However, none of these exposures developed into anything and we again thank the Lord for how He has protected and strengthened Joseph.

We often feel humbled by the tremendous level of grace we have received from the Lord. Then today we were listening to a message from the Bible that explained the super abundance of His kindness. God is a kind father who comforts us not only for our good but also for the good of others. Just as Joseph, when he was hungry and tired from a day of fasting could fall asleep in my arms trusting that things would be ok and receiving comfort from me even when his circumstances had not yet changed – so too are we to come to our heavenly Father and receive His comfort in our afflictions and sufferings. And His comfort is not just for us, but for the encouragement and comfort of others.

If you are suffering today, come to the Father and ask for His help. He is the Father of mercies and  the God of all comfort. 

3 Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, 4 who comforts us in all our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God. 5 For as we share abundantly in Christ’s sufferings, so through Christ we share abundantly in comfort too. 6 If we are afflicted, it is for your comfort and salvation; and if we are comforted, it is for your comfort, which you experience when you patiently endure the same sufferings that we suffer. 7 Our hope for you is unshaken, for we know that as you share in our sufferings, you will also share in our comfort.

8 For we do not want you to be unaware, brothers, of the affliction we experienced in Asia. For we were so utterly burdened beyond our strength that we despaired of life itself. 9 Indeed, we felt that we had received the sentence of death. But that was to make us rely not on ourselves but on God who raises the dead. 10 He delivered us from such a deadly peril, and he will deliver us. On him we have set our hope that he will deliver us again. 11 You also must help us by prayer, so that many will give thanks on our behalf for the blessing granted us through the prayers of many.

2 Cor. 1:3-11


Joseph is 3!

Prayer Request: On Monday 9th February Joseph will have a lumbar puncture to allow a protective chemo treatment of his central nervous system. Joseph has to fast for most of the day and then have the procedure. This has been done many times and each time Joseph has done really well. But we are convinced that he does so well because so many of you pray for him on these days.

Joseph is 3
Joseph is 3!

On 1st January Joseph turned 3! Here is a photo of him with the birthday cake he and his brothers made (or at least decorated). It was a wonderful time to rejoice in Joseph growing and to thank God for His great kindness to our family.

It was on 1st January  that I proposed marriage to Kate. Then 6 years later she gave birth to Joseph on that same day. At his birth Joseph was born with a double knot in his cord, something that is seen about once in ten thousand births. Now we are celebrating Joseph having come through the deep waters of the initial infection and the intense chemo of his early treatment. So the first of January is a day packed with so much to be thankful for as a family.


Enjoying the snow

Just a few days ago we had a bit of snow at the house and Joseph was able to enjoy it with his brothers. He helped to build a snowman and had a wonderful time clearing the snow from the steps.



The blurry object in Joseph’s hand is a planet,  just in case you could not tell. On this day Joseph and his brothers were learning about the solar system. So they each created scale sized planets from modeling clay and built the solar system on our dinning table.

As we start a new year and see Joseph doing so well, it is amazingly easy to forget just how much the Lord has done for Joseph and for us as a family. We get busy and though Joseph gets oral chemo each night he has been spared from most serious side effects. Yet it is in the day of peace that we really should take the time to remember that we are here and Joseph is here because God heard the cry of His people and did mighty things for us.

God knows we easily forget the goodness He pours on us so He tells us to intentionally remember His goodness and tell of the great deeds of the Lord to our children.  We are to do this so that we can live each day rooted in the knowledge that no matter what comes in this broken world our lives are not the sum of a bunch of random events but overseen by a God who loves us.

Only take care, and keep your soul diligently, lest you forget the things that your eyes have seen, and lest they depart from your heart all the days of your life. Make them known to your children and your children’s children. Deut. 4:9

Special Christmas Treat

For the past few years our family has gone to the Snowman Concert here in Belfast during the Christmas holiday season.

Waterfront Hall – Belfast

The Ulster Orchestra performs the music from the Snowman, an animated children’s special, in the Waterfront Hall in the heart of Belfast. Families from all over Northern Ireland fill the hall for two special performances.


Save the Ulster Orchestra

This year we planned for Kate to take the two oldest boys and I would stay home with Joseph and Ezra. But it just seemed sad for Joseph not to be able to get out for such a fun time with his brothers. However, with his immune system suppressed, a big gathering like the Snowman Concert would be the last place we could take Joseph.

However, I wrote to the Waterfront Hall and asked if there was any kind of private viewing area where we might be able to bring a child with a suppressed immune system to see the concert. To my surprise, they responded that they were able to make an accommodation for us and we could come as a family.

When I met Hama O’Reilly (the Waterfront Hall Duty Officer) at the ticket office, I was not sure how all of this was going to work. But quickly I could see that she had really thought through what our needs would be. We were taken in a side entrance between the performances when the building was mostly empty, and then ushered into the staff only area which was completely void of people. We were then led down a corridor to an unmarked door. Once inside we saw this sign:

The door to our private viewing room

Behind this door was a private room that had 3 glass walls and looked directly over the Orchestra. We had an amazing view and were totally sealed off from the crowd.

What the Waterfront Hall had done was convert a technical sound room into a private viewing box for our family so that Joseph could participate in the concert.

Joseph enjoying the concert
Joseph sharing the concert experience with his brothers

At the end of the concert there is always a round of Christmas songs and then giant “snowball” balloons are dropped into the crowd and bounced around the concert hall.

Our Christmas tree and giant “snowball”

Well, the Waterfront Hall staff did not miss a detail. They had installed a Christmas tree just for our family and provided a giant “snowball” balloon as well!

Joseph having a wonderful time with his “snowball”

After the concert hall had cleared, Hama and her team escorted us out the side door between events to our car parked nearby. The whole event was a wonderful piece of logistics that kept Joseph safe and allowed him to experience the concert with his brothers.

What an amazing experience to have Joseph with us for the first time in a year and half at a public event. Hama O’Reilly and her team at the Waterfront Hall showed us such warmth and thoughtfulness.  A real reflection of the love and care the Lord exercises in each of our lives.


Make a joyful noise to the Lord, all the earth!
Serve the Lord with gladness!
Come into his presence with singing!
Know that the Lord, he is God!
It is he who made us, and we are his;
we are his people, and the sheep of his pasture.
Enter his gates with thanksgiving,
and his courts with praise!
Give thanks to him; bless his name!
For the Lord is good;
his steadfast love endures forever,
and his faithfulness to all generations.

Psalm 100