Back home

Thank you for praying for Joseph.

Joseph received several IV antibiotics and was allowed to return home on Monday evening. He has an oral antibiotic to take at home and is off chemotherapy until the infection is cleared.

He has been feeling well enough to play outside and was not too excited about taking a nap today. However he has not been sleeping well at night due to a cough. Please pray that whatever is causing the cough would clear.

We have a call with the hospital doctor on Friday to decide whether Joseph is well enough to resume his daily chemotherapy.

campout in the hematology ward

Prayer Request: Please pray for Joseph’s fever to clear and for him to be able to return home in full health.

Joseph developed a fever this afternoon so we are at the hospital for antibiotics and observation. He has been very chatty and interested in all the processes and procedures.

Then Joseph was asked if he would like some toast and he very happy to be offered strawberry jam with it. When he got his toast he was munching away talking about how good it was. I asked him if it was because of he jam and he nodded his head while chewing.

Then I asked him – Joseph would you normally get jam with our toast at home?  To this he replied “No Daddy I would not get jam BUT they OFFERED it to me so I had to take the jam”

 

Thank you for your prayers

 

 

7.3

Praise: For all who prayed for Joseph this past week – thank you. We just returned from the clinic and Joseph’s  neutrophils were 7.3 – which is the highest number he has had in 3 years.

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When we went to the clinic today to have Joseph’s blood tested we were talking to the senior lab scientist who reviewed Joseph’s result from last week. I told him that when I was told Joseph’s neutrophils were “zero” I kept waiting to here the “point something” after that. He replied, “Yes, I looked at it myself and it really was ZERO, but we are looking for better things today.”

A short time later a smiling nurse came to us with the results. Neutrophils of 7.3 and we are now back on oral chemo. For Joseph this was just another week of learning and play – but for us it was a day by day evidence of God’s grace to our family as Joseph did not grow ill. Twice during the week he told us he had a sore throat as he was going to bed – we were waiting to see if he developed a fever overnight but by the next morning he was feeling fine.

Last night as I tucked Joseph in bed he had a smile on his face and asked ” Daddy when will the last day come?” I replied “You mean the last day of your treatment? and Joseph said “No, when will be the day that Jesus comes back?” This was asked without the fear or agitation that people normally have about such a question – Joseph had a peaceful expression and was smiling – this was a question of ‘when will this wonderful thing happen’. Just the type of thing that every father with a 4 year old theologian is asked.

I told him, ” Well, Joseph, God has not told us when it will happen  – just that it will happen and to be ready for His return”. Joseph replied, “Why won’t God tell us?” I said, “It’s so we will not get all focused on that one day and get on with what He has given us to do while we are here.”  “But why?”Joseph asked. To which I said, “Suppose I told you boys we were going on holiday in 3 weeks. All that you would be able to think about would be holiday – rather than all the other things you need to do these next 3 weeks. Right now you know that we will go on holiday at some point but not which day, so you can go on with the things you have to do now.” Then I asked, “Does that make sense?” and to this Joseph smiled and said, “Yes, daddy…That will be a good day.” And then snuggled into his bed and dropped off to sleep.

No one knows about that day or hour, not even the angels in heaven, nor the Son, but only the Father. As it was in the days of Noah, so will it be at the coming of the Son of Man. For in the days before the flood, people were eating and drinking, marrying and giving in marriage, up to the day Noah entered the ark. And they were oblivious, until the flood came and swept them all away. So will be the coming of the Son of Man. Two men will be in the field: one will be taken and the other left. Two women will be grinding at the mill: one will be taken and the other left.

Therefore keep watch, because you do not know the day on which your Lord will come. But understand this: If the owner of the house had known in which watch of the night the thief was coming, he would have kept watch and would not have let his house be broken into. For this reason, you also must be ready, because the Son of Man will come at an hour when you do not expect Him.

Who then is the faithful and wise servant, whom the master has put in charge of his household, to give the others their food at the proper time? Blessed is that servant whose master returns and finds him doing his job.      Matthew 24:36-46

 

zero

Prayer Request: That Joseph’s Neutrophil count will return to normal and he will be protected from infection in the mean time.

Joseph had a check up yesterday, the picture of health and ready to go home and play as soon as his check up was done. However, when we met with the doctor she told us that Jospeh’s neutrophils were zero.  I kept waiting for the zero point something but there was no “point something”. So I asked “Do you mean – zero – as in nothing at all?” and she said “Yes, we have checked it twice – however we don’t see any indication that leukemia has returned just that his neutrophils are absent.” Of course having a zero count on your neutrophils means that Joseph is at extreme risk of infection since his immune system is not functional. In response to this low neutrophil count Joseph has been removed from all chemotherapy for a week. It is hoped that his immune system will recover during that time and he will return to normal treatment.

After the appointment we went home and Joseph was very active playing with his brothers and had a good meal. There is no external indication that there is anything amiss.

It is easy to feel like Joseph is surrounded with the threat of infection, with zero neutrophils the natural bacteria in his body can cause serious infections. However, we are not alone in this situation – the Lord is here and He is acting and He responds to the prayers of His people. I am reminded of the time in Scripture when Elisa the prophet  of God was to be captured and killed by troops of the king of Syria. An army was sent to capture one man. In the morning the servant of Elisa saw that they were surrounded by a hostile army and told Elisa but Elisa was not concerned in the least. Had Elisa lot his senses? Could he not understand the hopeless situation he was in?  Then Elisa prayed that God would allow his servant to see the full situation – what was happening in the spiritual realm and not just the physical realm. Then God opened the eyes of the servant and what he saw amazed him – there was a huge army of FIRE – fiery warriors, horses and chariots that far out numbered the physical army that had come to harm them. Now he could see that it was this Syrian army that was in danger of destruction , not he and Elisa.

And so it is with Joseph – with the God who created the entire universe protecting and sustaining, Joseph can continue in play in peace despite being surrounded with germs and the risk of infection.

Now when the attendant of the man of God had risen early and gone out, behold, an army with horses and chariots was circling the city. And his servant said to him, “Alas, my master! What shall we do?” So he answered, “Do not fear, for those who are with us are more than those who are with them.” Then Elisha prayed and said, “O LORD, I pray, open his eyes that he may see.” And the LORD opened the servant’s eyes and he saw; and behold, the mountain was full of horses and chariots of fire all around Elisha. 2 Kings 6:15-17 KJV

LP & DIY

Thank you for praying for Joseph once again during his Lumbar Puncture (LP) on Monday 20th June.

The day went very well and Joseph even managed to fit in some DIY between his check-up and the procedure. Here he is assembling a stool from IKEA with a rather stubborn screw. But as you can see, neither the screw nor his fast seemed to slow him down too much.

 

Fixing 2

Fixing

Joseph’s blood test on Monday morning showed that his neutrophils are low so his chemotherapy dosage has been reduced for now to allow his immune system to recover.

We continue to be amazed at how the Lord has protected him from infection despite his often being so vulnerable. Thank you for praying!

3 to go

Prayer Request: Joseph will have a lumbar puncture with intrathecal chemotherapy on Monday 20th of June.  This is the standard treatment that he receives and he has done well each time but we would still request prayer for a safe and effective procedure and grace for a day of fasting.

 

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Team of “firemen” – Joseph on the far right

In the picture above Joseph is playing “fireman” with his brothers. They were inspired by a trip to the fire service and here are fully kitted out for cutting open a car wreck and spraying it down with foam.  This is the type of play that many boys and girls have at home. However this morning Joseph and younger brother Ezra were home playing  a different game. I walked in the living room to hear “Ok, we are at the hospital now and you have too few blood cells…” This was Joseph as the consultant examining his patient (Ezra) and using multiple interventions to deal with the problem of too few blood cells. There was transfusion, injection and then various types of surgery employed. Happily the interventions were successful and the patient fully recovered – to then become the consultant with Joseph as the patient.

Tomorrow Joseph is scheduled for a lumbar puncture with intrathecal chemotherapy. That is a fancy way to say that Joseph will have some chemotherapy injected into his spinal fluid. Joseph has had more than a dozen of these procedures and has three more to go before the end of his treatment. Each procedure carries a certain amount of risk of infection, seizure and drug reaction. However, so far Joseph has not had any negative outcomes from this treatment and we thank you for praying for him.

The purpose of this procedure is to make the central nervous system (brain and spinal column) toxic for leukemia cells. The reason this is done is that when the first successful treatments for childhood leukemia were developed, often the leukemia would return and many times in the central nervous system. It was determined that a few leukemia cells had “hidden” in the central nervous system – which was protected from the full body treatment by the blood brain barrier that normally protects the central nervous system from infection. To get rid of leukemia cells hidden in the central nervous system radiation was used. That was very effective at killing the leukemia cells but left long-term cognitive impairment. It was then determined that chemotherapy injected into the spinal fluid could keep leukemia cells from hiding in the central nervous system and it did not result in long term cognitive loss.

This need to search out and remove every trace of leukemia reminds me very much of the way the Bible talks about sin. Jesus said one of the most astounding things with regard to sin “It is better for you to enter life crippled or lame than with two hands or two feet to be thrown into the eternal fire.” Here Jesus is NOT advocating self-mutilation but says that even in the most extreme case of our own hands and feet causing sin in our lives we would be better off without them than live with sin. This is very similar to the situation that some children faced in early leukemia treatment that used radiation treatment of the central nervous system  – it was better for them to face losing cognitive function – maybe never being able to read – than to have leukemia return, for that meant death. Most of the time we don’t like to hear about sin because it makes us feel like we are being attacked and made to feel guilty. After all who would sign up for a medical test for a fatal disease for which there was no treatment? But in the case of sin there is good news. Jesus did not come to just tell us to avoid sin but to actually remove sin. Now, sin does not have to be feared for it can be confessed and forgiven – no matter how big nor how “small”, every bit of sin can taken away and replaced with pure righteousness.

 

But if we walk in the light, as he is in the light, we have fellowship with one another, and the blood of Jesus his Son cleanses us from all sin.  If we say we have no sin, we deceive ourselves, and the truth is not in us.  If we confess our sins, he is faithful and just to forgive us our sins and to cleanse us from all unrighteousness.

1John 1:7-9 ESV

 

 

Nice Toys

After an overnight in the Royal Children’s Hematology Unit, Joseph is back home playing with his brothers. Soon after we arrived at the hospital Joseph’s temperature began to decline. We were admitted and Joseph slept in a bed across the hall from where he was admitted 2.5 years ago. No IV was required and Joseph slept well – even through his “obs” or observations taken every four hours. In the morning I looked at his chart and saw that his temperature had dropped overnight to 36.0 C.

In the morning Joseph was feeling well and ready to eat and play. We went out to the common area on the Hematology ward where there are toys and a nurse brought Joseph some breakfast. He was delighted. He looked around and said ” Daddy, they have some nice toys here!” and he proceeded to play and eat some breakfast.

After a bit his consultant came up smiling, enjoying his play and his chat. She did a physical exam of Joseph and went over his test results. He was healthy and able to go home. The overnight was a precaution to make sure that the fever was not from a run away infection.

This was the first time in 2.5 years that we had been on the Children’s Hematology Ward overnight. The ward has been totally rebuilt and updated. Again I was aware of how blessed we are to have such a top notch facility so close to our home. It was also a time to see a few of the doctors and nurses who served us so well over two years ago. They were happy to see Joseph doing well and growing. While we certainly remember the excellent care we received it was clear that, in the midst of all the people that they serve, we were remembered as well. The nurse who brought Joseph his breakfast asked me if I would like a cup of tea and then said with a smile – “just milk with that – isn’t that right?” She was recalling the many cups of tea that she and others provided two years ago.

As we were leaving we saw a staff member with a packet of tissues at hand. They were off to the side with their back to us. Was there a personal crisis? Was there a patient who was not going to get better? It was a silent picture of the deep humanity of these skilled professionals that serve so well.

This picture reminded me that it is humanity that sets Jesus apart from all other gods. Jesus, unlike any other god, does not just have sympathy for us, but He has empathy for us. He lived and died as a human being. He knows from first hand experience pain, sorrow, being misunderstood, being hated, fatigue, thirst, losing friends to death, being betrayed. He experienced all those things by choice, as part of His great love for us. He chose to bond His deity with humanity in a way that we can not comprehend. And now the God Man who walked on this earth sits on the throne of heaven in a resurrection body that is like the one He has promised to give to all who are His on the last day. There is no barrier of separation between us – He knows all the worst about us and paid for it all. He has not overcome sin, hell and death to gather a race of slaves – rather He calls us ‘friends’ and ‘brothers’. Yet, because He is the God Man he is not crushed by the sorrows and sins of this world – nor does He have to distance himself – He is willing live inside your world and experience all the pain and joys full strength and open the family of heaven to you. Would it not be a pity to miss the most wonderful relationship anyone could have due to fear, pride or unbelief?

 

No longer do I call you servants, for the servant does not know what his master is doing; but I have called you friends, for all that I have heard from my Father I have made known to you. John 15:15

 

 

39.2

Tonight we are in the Royal Children’s Hemotology Unit. Just before bed time Joseph told Kate that he felt cold. So Kate took his temperature and found it to be 39.2 C. The guidelines for Joseph, due to his suppressed immune system are that if his temperature reaches 38.0 C he is to go to the hospital for evaluation. When Kate said 39.2, I looked up and said “what did you say?” and she confirmed that reading. Immediately I had my phone on the speed dial for the Hematology unit. They talked with me and confirmed that we should come down and plan to stay the night. Though we keep a bag packed for such needs we have not used it and many of the clothes in it were too small for Joseph. So there was a bit of hurried repacking to be done.

At the hospital they performed a check and took blood for tests. Joseph was very patient and helpful. I asked him if he remembered being on the ward and he said he did not. As were were walking to the room for him on the ward Joseph looked up and said “Daddy, they take really good care of us here.” And In my rushed state of mind it stuck me that Joseph was sensing the peace of God. Which reminds me of this verse:

 

casting all your anxieties on him, because he cares for you. I Peter5:7

Reminded how wonderful health is…

Prayer Request : Monday April 4th – Joseph has a scheduled chemo treatment of his spine and central nervous system. He will have a day of fasting and we would request prayer for him to have a safe and effective treatment as well as grace for his time of fasting.

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Joseph with his Easter nest

A few days ago Joseph’s two older bothers both were sick during the night at the same time. It would be 3:30 am before they were able to go to sleep. The whole time that this was going on Joseph was blissfully sleeping. The next day both boys were doing much better and we were wondering if Joseph would get whatever it was. A couple of days went by and everyone seemed to be healthy. It appeared that once again Joseph had remained well when all those around him were sick. But then last night not long after dinner Joseph came up to me and said in his cheerful voice, “Daddy, I’m going to be sick tonight.” Right.. he looked fine and he sounded fine and we checked his temperature and that was fine. Kate and I talked it over and wondered if this to get some of the extra attention his older brothers had gotten a few days before. We continued on with our routine and I was reading to the boys from the Bible while they were settling down in their beds – when suddenly Joseph cried out, “Daddy, I don’t feel well” and I jumped up while he ran to the bathroom. Sure enough he was sick.  Any time something like this happens with Joseph you have to check for fever and it could be a rush to the hospital. But there was no fever, so I put him in bed with me and watched him in the night to make sure he was ok – taking his temperature every few hours. By this morning he was doing well – and seemed to make a full recovery. About mid-morning he was sitting on the sofa and fell fast asleep. He just curled up like a kitten and slept until lunch. He ate his lunch and dinner well and is now fast asleep with his brothers.  We will get up early in the morning to go to the clinic for a blood test and if all is well then he will fast the day and in the afternoon have his chemo treatment of his spine and central nervous system.

Such a mundane thing as having an upset tummy can tempt us to have many concerns for Joseph. But Joseph’s health is not an intrusion into real life – rather it is real life intruding into our existence, helping us to see the amazing gifts that God blesses us with every moment. It reminds me of what Jesus told His disciples:

“Therefore I tell you, do not be anxious about your life, what you will eat, nor about your body, what you will put on.  For life is more than food, and the body more than clothing.  Consider the ravens: they neither sow nor reap, they have neither storehouse nor barn, and yet God feeds them. Of how much more value are you than the birds!  And which of you by being anxious can add a single hour to his span of life? If then you are not able to do as small a thing as that, why are you anxious about the rest? Consider the lilies, how they grow: they neither toil nor spin, yet I tell you, even Solomon in all his glory was not arrayed like one of these.  But if God so clothes the grass, which is alive in the field today, and tomorrow is thrown into the oven, how much more will he clothe you, O you of little faith!  And do not seek what you are to eat and what you are to drink, nor be worried.  For all the nations of the world seek after these things, and your Father knows that you need them. Instead, seek His kingdom, and these things will be added to you. Luke 12: 22- 31 (ESV)

300 Days and Counting

I took Joseph in for a check-up Wednesday past and there was a survey being conducted about “end of treatment” services. That raised the question, so I asked Joseph’s consultant – “When will Joseph complete his treatment?” She replied – “humm, lets see, I think there is a schedule here… Yes, the 27th of December 2016.” So as of today that comes to 300 days.

I was suddenly filled with other questions – “What will happen then?”, “What risks will Joseph face?” and several others. To the first question the answer was that Joseph will move from a check-up every week or two to once a month for about a year. Then that frequency would stretch to every 6 weeks, until 2 years have passed. Then, if all is well, regular checkups come to a conclusion. Then Joseph will move into a new life of being a little boy without Leukaemia who is  growing and learning. For us as parents, we learn to trust the Lord in new ways once treatment ends – that remission will be deeply rooted and sustained while being aware of side effects of treatment that could arise.

Joseph and Selah
Joseph Loves Selah

Do your prayers still matter? Yes, they do! Every day of life is a gift. In Joseph’s case we have become more intensely aware of how precious the gift of life is. And we have become more attuned to how sustaining prayer is for Joseph and our family. One small example is just how healthy Joseph has been – many times not developing fevers when all his brothers had one. How does a little boy with a compromised immune system avoid illness and again and again?

Prayer.

One of my favourite verses about prayer comes from the book of James.

The effectual fervent prayer of a righteous man availeth much. James 5:16b (KJV)

However, that is only the second half of the verse. If we look at the whole section a more interesting idea comes out – like how do I have powerful prayers? By being super holy? By never making a mistake?

No, by humbly confessing when I have wronged others and asking for them to forgive me. Also by forgiving those who have wronged me. With this attitude I can have Elijah-like power in my prayer because I have all the rubbish cleared out and the path open for God to work in my life. Then wonderful things can happen – like  hopeless marriages being restored, or the hardest of hearts being softened, or little boys being healed from Leukaemia.

Confess your trespasses to one another, and pray for one another, that you may be healed. The effective, fervent prayer of a righteous man avails much.  Elijah was a man with a nature like ours, and he prayed earnestly that it would not rain; and it did not rain on the land for three years and six months.  And he prayed again, and the heaven gave rain, and the earth produced its fruit. James 5:16-18 (NKJV)