Joseph is still at home and did not have to be admitted to the hospital!

Last week I took Joseph in for his last infusion of “red devil” and they took a blood count. We were amazed that we had gone through the whole week and Joseph had not gotten a fever of become seriously ill. When we returned home the nurse called me with the result – Joseph’s neutrophils were 0.1, which means that he was very much at risk of serious infection. Over the next couple of days, Joseph became very pale as his red cell count would “bottom out” before he would begin the process of recovery. We suspect that his neutrophils hit zero the day after his infusion as he seemed to decline in so many other ways those next two days.

Then on the third day after the infusion a bit of color began to return to Joseph’s cheeks and he was being more active. These few days were the closest we have been to how ill Joseph was at the beginning.

All of the week following this last infusion, Joseph was on steroids which helped his bone marrow to recover more quickly, but also made him irritable and anxious. He needed more comfort at night and a few 3:00 am excursions to the kitchen to make scrambled eggs. However, we could tell we were being carried along on prayer. Joseph was still playing and eating and functioning quite well, even when his body was at its lowest.

Yesterday Kate went with me to take Joseph in for a blood count. We were able to see several families who are on a similar journey. Then it was time to see the doctor and get the result from Joseph’s blood count. When the doctor received the results he showed it to the nurse and she said “better get that checked – that seems far too high”. The result under consideration was Joseph’s neutrophil count – it came in at 1.0 which was again amazing for the treatment that he had just finished. Other results showed that he was not fully healthy but that he was recovering well.

Joseph now has a few days with no treatment at all to give his bone marrow a chance to recover before the second half of this block of treatment starts. He will go in Monday for another blood test and if his numbers are fully recovered he will start the next phase on Tuesday. If he is not fully recovered he would get another week off before starting the second half of this treatment block.

During these past two weeks we have received many indications that people were praying very specifically that Joseph would not have to go into the hospital with an infection during this block of treatment. Even though we were not in contact with many people directly we did have a great sense of protection and encouragement. Thank you for praying!

In Matthew chapter 25 Jesus is telling what it will be like at the day of Judgement when He  commends His own and invites them into heaven and when He condemns those who are not His to eternal punishment. Among the things that Jesus commends is when His people came to visit Him when He was sick. Now when Jesus says this, they all reply, “But Lord when did we ever see you sick and minister to you?” It is interesting to notice they have no desire to take credit for what they did not do. Then Jesus tells them the surprise ending, that every time they visited and helped someone who knew Jesus, they were visiting and helping Jesus Himself – because Jesus lives inside each of His people.

Jesus says that all those who had ministered to Him were welcome to enter His heaven – not because they were kind people and deserving of it, but because they were His. The people who belonged to Jesus did kind things because they had a family resemblance to Jesus. They knew Him and He knew them. Because they were part of Jesus’ family, heaven was their home, not because they were good people.

“When the Son of Man comes in his glory, and all the angels with him, then he will sit on his glorious throne.
Before him will be gathered all the nations, and he will separate people one from another as a shepherd separates the sheep from the goats.  And he will place the sheep on his right, but the goats on the left. Then the King will say to those on his right, Come, you who are blessed by my Father, inherit the kingdom prepared for you from the foundation of the world. For I was hungry and you gave me food, I was thirsty and you gave me drink, I was a stranger and you welcomed me, I was naked and you clothed me, I was sick and you visited me, I was in prison and you came to me. Then the righteous will answer him, saying, Lord, when did we see you hungry and feed you, or thirsty and give you drink? And when did we see you a stranger and welcome you, or naked and clothe you? And when did we see you sick or in prison and visit you?  And the King will answer them, Truly, I say to you, as you did it to one of the least of these my brothers, you did it to me. Matthew 25:31-40

Last Wednesday Joseph went in for a blood test before his infusion of Doxorubicin (or “red devil”). Joseph’s results were amazing – all his numbers were strong and I think his neutrophils were one of his best readings since he was diagnosed. So we were all encouraged going into this week of projected infection and hospitalization.

Joseph was given an anti-nausea medicine before his infusion was started and he spent a good bit of his time during the infusion snacking on pasta. I felt a bit apprehensive to have him snacking while receiving a medicine that has a reputation of making people sick. However, Joseph did well and we did not have any problems Wednesday night. Thursday morning we gave Joseph another dose of anti-nausea medicine and he had a steroid enhanced appetite. Unfortunately after a hearty breakfast Joseph was sick. It did not bother him and he was off playing within a few minutes. The rest of the day went well and he ate well at lunch and dinner.

Starting on Thursday we began to check Joseph’s temperature every 4 hours. We were a bit on edge as he was more emotional than normal (due to steroids) and was telling us about feeling “odd”. Over the next few days Joseph would be sick after a meal every couple of days but he was not having any other serious problems.

Tonight Joseph has just gone to bed in a special bed we built next to ours so that he will sleep better and so we can keep a close eye on him through the night. In the morning we will be 24 hours away from his next infusion and the end of the time during which Joseph was expected to get an infection and be hospitalized. We are amazed to see Joseph managing the side effects of the various drugs in his body so well and at the Lord’s grace being so evident this week.

During the week Joseph walked up to his grandmother with a Bible and said “Nanna, read”. So Marie would read a significant portion of Scripture while Joseph listened attentively. This seemed to give him comfort and it was a behavior he would repeat several times. Watching him do this reminded me of the two things that will last forever, The Word of God and the Souls of Men (and Women). Everything else is temporary.  As much as we would like Joseph to enjoy a full life that is leukemia free, our greatest desire is for Joseph to know Jesus and have everlasting life.  There is a day coming when all the graves will be opened and those who belong to Jesus will experience life the way it was designed to be, endless. Then nothing else will matter, except the Word of God and the Souls of Men (and Women) made perfect in Christ.

 “Truly, truly, I say to you, an hour is coming, and is now here, when the dead will hear the voice of the Son of God, and those who hear will live. For as the Father has life in himself, so he has granted the Son also to have life in himself. And he has given him authority to execute judgment, because he is the Son of Man. Do not marvel at this, for an hour is coming when all who are in the tombs will hear his voice and come out, those who have done good to the resurrection of life, and those who have done evil to the resurrection of judgment. John 5: 24 -29

Highlight: Joseph has been tolerating his treatment well, though it has been a challenge to him.

Prayer Request: We have been told to expect Joseph to get a fever and need to be hospitalised for a week on intravenous antibiotics as his body will be so run down from the current course of treatment. Please pray for the Lord’s protection of Joseph as he enters this time of testing.

Friday was the 5th day of Delayed Intensification. Joseph went in to receive an intra-muscular shot of Asparaginase. This drug takes advantage of a weakness in leukaemia cells. Unlike most healthy cells in the body, leukaemia cells are not able to produce asparagine, a substance needed by cells to process nutrients. Leukaemia cells get their asparagine by picking up left over asparagine produced by heathy cells. Asparaginase destroys the left over asparagine in the blood stream thus denying  leukaemia cells this critical substance. Without asparagine leukaemia cells “starve” and die.

This is generally a painful shot and we are grateful that the drug is now given in a time release version that provides an even dose over two full weeks. In the past, children needed to receive this shot in their thigh every other day for two weeks. The pain of the shot was amplified by the knowledge that another was coming a day later. When Joseph went in to receive his, he sat on my lap while the nurse pulled out a syringe with a rather long looking needle. She quickly made the injection as I explained to Joseph that this would sting. I covered his eyes so that he would not watch the injection and to everyone’s surprise he did not make a sound when the needle was inserted into his leg. Only when the injection was made did he let out a low protest and then it was all over. Then Joseph jumped off my knee and the nurses all said, “Wow, good boy Joseph!”

As we were picking up our things a nurse told me that we needed to wait for a hour before we could go home. It was explained that there is always a chance of an acute allergic reaction each time a child receives this shot. When our wait time was almost done, we met a nurse in the hallway who asked us what treatment we had that day. When we explained she told me, “Yes, very good that you stayed for the waiting time. Just two weeks ago a child had a severe reaction and went into shock, requiring emergency care and oxygen. Definitely not something you would want to deal with in the car on the way home.”

Over the weekend Joseph was experiencing the dual problem of feeling nauseous at times and being ravenously hungry because of the steroids. This can cause him to be very frustrated. However, with a wide variety of “nibbles” and the use of anti-nausea medicine he weathered the weekend.

Joseph is feeling the effects of the chemical warfare going on in his body. At some meals he is literally shaking with anticipation. Other times he is asking to be held and walked about as he feels “strange” and would like the comfort of someone holding him. However, after a bit of this he is off to play with his brothers again.

Tomorrow Joseph gets another infusion of “Red Devil” and is taken off steroids for seven days. We have been told to expect him to come down with a fever sometime this next 7 days and need to be hospitalised for antibiotic infusion for a week. Our bag is packed and sitting by the door.

The goal of this hard cycle of treatment is to ruthlessly eradicate any possible remaining leukaemia cells in Joseph’s body. It is hard on Joseph but failure to do this would mean the ultimate return of leukaemia in a “hardened” untreatable form.  This is exactly the same thing that Jesus has taught us about sin. He said that it was better to cut off a hand or pluck out an eye than to allow sin to control our bodies. Jesus was not talking about self mutilation but rather being ruthless with our sin and not allowing any of it to survive. Jesus draws a stark picture of either being ruthless with our sin or finding ourselves cast into hell due to that sin. Fortunately for us, Jesus died to not only pay for our sins but to give us the power to be ruthless with the sin that still remains with us in this life. Jesus broke the power of sin over us, but sin often then whimpers to us to not be so stern and harsh, only waiting for a chance to try and destroy us. Ruthless eradication is part of the path of life.

“You have heard that it was said, ‘You shall not commit adultery.’  But I say to you that everyone who looks at a woman with lustful intent has already committed adultery with her in his heart.  If your right eye causes you to sin, tear it out and throw it away. For it is better that you lose one of your members than that your whole body be thrown into hell.  And if your right hand causes you to sin, cut it off and throw it away. For it is better that you lose one of your members than that your whole body go into hell. Matthew 5: 27-30

On Wednesday, the third day of Delayed Intensification, Joseph received Doxorubicin – a drug with the nickname of “Red Devil”. The drug is received via infusion for an hour and the liquid is red in colour. It is known to cause heart damage in high doses, will cause Joseph’s remaining hair to fall out, can cause skin and hair pigment changes, will cause immune system suppression and has a reputaion for inducing nausea and vomiting. Derived from a soil bacteria, this drug is classed as an antibiotic with a very powerful action on dividing cells. Along with Doxorubicin, Joseph was given vincristine and also started a week of steroids to be given each morning and evening.

With a nickname like Red Devil, we were wondering what the day would be like for Joseph on this drug. I was just returned home from a trip, so Marie took Joseph in to the clinic for his treatment. When they arrived a nurse advised Marie that Joseph receive a preventive anti-nausea medicine before treatment began. Then the hour long infusion started and Marie tried not to look at her watch. As Joseph was linked to an an infusion stand he could not wonder about so Marie read him stories to keep him occupied. To her surprise, when she began to read about a fitness expert who was doing balancing and acrobatic exercises, Joseph began to stand on one foot and say, “juggling”. He then experimented with various balancing routines with the IV tube trailing, while holding on to the infusion stand with one hand.

Once Joseph arrived at home he was immediately busy with his brothers, running about and ready to eat. He had a great dinner and was off to bed where he had a deep and restful sleep.

We were, to say the least, amazed at how this day went.

Thank you for praying for Joseph.

On Friday Joseph has an intramuscular injection of Asparginase scheduled. So far he has recovered from these painful shots fairly quickly and has not had any negative reactions. Though we are told that each time he receives this he can have a reaction.

Joseph’s balancing act while he was receiving his treatment reminded me of the true “balanced life” in Christ. In this life, once we have asked Him to cleanse us from all our sins, we walk the path of Christ’s example. But Christ said His way was “narrow”. We can picture this like a balance beam, a narrow foot bridge, or a narrow path along a cliff edge.  In each case, to be safe, we keep our eyes on the path we are walking and center our body over the path. If one looks off to the side it is very easy to “follow your eyes” and end up off the path. It is also easy to put our trust in branches or other things that are along our path by leaning on them to steady ourselves. The problem comes when these things give way unexpectedly and we are thrown off balance and lose our footing on the path.

In our lives we can “look off the path” by desiring things that we would not do if Jesus were standing beside us. We can also “lean on” our jobs for security, our plans for our future happiness, or depend on our understanding of what is “good” for us and distrust God when we don’t get that.

The safe place is putting our full trust in Jesus. Or, we could say, leaning on Him with our full weight. He will not fail us, He will not give way – even when everything around us seems to give way.

Trust in the Lord with all thine heart; and lean not unto thine own understanding. In all thy ways acknowledge him, and he shall direct thy paths. Be not wise in thine own eyes: fear the Lord, and depart from evil.

Proverbs 3: 5-7

Highlight: Joseph’s neutrophil count was high enough to begin the delayed intensification block of treatment.

Highlight: Joseph coped very well with fasting and his lumbar puncture.

Prayer request: that Joseph may continue to have grace and protection during this intense phase of treatment.

Yesterday (Monday) was the first day of delayed intensification for Joseph. He had to fast for most of the day and have a lumbar puncture for chemo treatment of his spine. This procedure requires a consent form be signed by a parent and I was not able to go with Joseph to the hospital. So a friend came to look after the older boys and then Kate and Ezra met Marie and Joseph at the hospital. It was very nice for Kate to meet all of Joseph’s friends at the hospital, the medical staff who have been caring for him. However, for Joseph it was a very different time as Ezra the 4 month old was getting a lot of attention.

Joseph’s blood test was very good, with his neutrophil count just where the doctors would like it to be for the start of this treatment block. After Joseph’s review by the doctor, Marie bundled Joseph up for a long walk in the park. Soon after she started, Joseph fell asleep in the stroller and did not wake up until she brought him up to the waiting area for the lumbar puncture. Once awake he played with toys in the waiting room very contentedly until he was called in for his treatment. After treatment he woke up in the recovery area and was very happy to have some crackers and juice. It was then the only real problem of the day occurred, Joseph so liked the juice and crackers he did not want to leave the recovery area. However, he eventually was ready to go home. Upon arrival he jumped into playing with his brothers and, as you can see in the picture, a bit of baking as well.

Yesterday there were children who were struggling with their time of fasting and others who did not seem to be tolerating their treatment that well. We were reminded again that this type of day – one where Joseph sleeps through his time of fasting and then has a treatment without adverse side effects, is due to grace poured out on him by God. Thank you for praying.

On Wednesday Joseph will receive chemotherapy (vincristine) and begin 7 days of steroids. On Friday he will receive an IV drip of a chemo drug which he has not yet had, plus another chemo drug by intramuscular injection. Please continue to pray for grace and protection for Joseph throughout these weeks of intensive treatment.

The whole purpose of this time of intense treatment is to root out any remaining leukemia cells in Joseph’s body. Though Joseph is in remission now, experience has taught the doctors that if they stopped his treatment today his leukemia would return and would be all but untreatable. They have to keep putting pressure on those few leukemia cells still hiding in various parts of his body so that they cannot get a foothold again. At the same time they have to allow his body to develop robust and healthy bone marrow that will be able to resist any future attempt by leukemia to return.

This process of putting out the bad and putting on the good looks so much like what Jesus taught about sin – that it was not enough just to try to get rid of sin but it needs to be replaced by the Holy Spirit – that if we only clean up our lives on our own we are really just hollow and empty waiting to be filled by something. If we refuse to invite God in it will be filled again by something else and just like cancer it will be even worse than it was to start with.

“When the unclean spirit has gone out of a person, it passes through waterless places seeking rest, but finds none. Then it says, I will return to my house from which I came. And when it comes, it finds the house empty, swept, and put in order. Then it goes and brings with it seven other spirits more evil than itself, and they enter and dwell there, and the last state of that person is worse than the first…” Matthew 12:43 -45

Prayer Request: Please pray for Joseph’s safety and protection from side effects as he starts this new intense treatment block. 

Highlight: Joseph has been doing well and in the last two weeks has started running as well as evidencing a quickly expanding vocabulary.

About two weeks ago we noticed that Joseph was starting to walk around on his tip toes.  Then he started to follow after his older brothers who were running around the house. Then one day Joseph started to run behind them, all the while calling out “I’m Running!”
The next check up at the hospital I told his doctors that he had starting running and their response was “That is great! Many children lose the ability to walk during the early blocks of treatment.”

Once again we were shown just how much Joseph has been sustained by prayer.
Starting on Monday the 3rd of March, Joseph will be entering the most intense block of chemo during his entire 3 year treatment. He will receive 6 drugs, 3 of which he has not yet been exposed to before. We have been warned that it is very common for children to become so immune suppressed that they get an infection and have to be hospitalized.  Of course with every new drug there is a long list of potential side effects, so we are reminded  afresh of our dependence on the Lord for Joseph’s health and future.

The prospect of infusing Joseph with several poisons is disturbing. It rubs against my natural instincts as a father. Yet, as we enter into this season I recall those first weeks of Joseph’s treatment when he was very distressed and very ill. Once day a nurse suggested that the problem was that his mouth was likely too sore for him to eat due to the infection he was struggling with. She said that he was certainly hungry but unable to eat due to the pain. I asked what we should do and she told me that we should swab the inside of his mouth with an antiseptic and a pain relief liquid. Both of these would be painful to apply to the raw and irritated tissue in his mouth. However, the result should be that he would be able to eat without pain for a few hours. My job was to hold Joseph while this procedure was carried out. It was indeed painful and he really cried out while this was being done. I was praying for him and telling him that while it stung it was going to be for his good. The nurse was right. Within 10 minutes of this treatment Joseph was asking for food. He was REALLY hungry. As he ate his levels of distress dropped and he fell asleep in my arms for a good nap. Then for the following week, before each meal, this became our routine – me holding Joseph while he cried and writhed as the nurse treated his mouth. Each time it resulted in him being able to eat well, but if you had looked in through the window all you would have seen was a father hurting his son.

The only way I could bring myself to do this to Joseph was the knowledge that this was for his good. Actually, if we had not done that he would have been much worse off. That caused me to think of how God the Father actually poured out pain and suffering on His Son when Jesus was crucified. All the while God the Father loved Jesus more than I could ever love Joseph. How could God the loving Father do this to His Son? Because it was for OUR good. Those painful treatments were healing Joseph’s mouth. But Jesus painful treatment was for the healing of our souls and spirits for eternity.

As we enter this new block of treatments for Joseph with so many unknowns, I can put my trust in a Heavenly Father who loves me and Joseph more than I can take in. He has the strength to allow us pain, but only when it will be for our good.

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?
Who shall bring any charge against God’s elect? It is God who justifies. Who is to condemn? Christ Jesus is the one who died—more than that, who was raised—who is at the right hand of God, who indeed is interceding for us. Who shall separate us from the love of Christ? Shall tribulation, or distress, or persecution, or famine, or nakedness, or danger, or sword?
As it is written, 
“For your sake we are being killed all the day long; 
we are regarded as sheep to be slaughtered.”
No, in all these things we are more than conquerors through him who loved us. For I am sure that neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers nor height nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord.

Romans 8:31-39

Highlight: Joseph’s 90 year old Great Grand Mother (Marie’s mother) died this week.

Highlight: Joseph’s neutrophils were still low so he continues on half dose oral chemo.

Prayer Request: Monday  03 Feb 2014, Joseph will have another lumbar puncture to receive chemotherapy of his spine. This will require fasting during the day before the procedure. Please pray for grace for his time of fasting, effectiveness of the procedure, and safety.

Joseph went in last week to have his blood checked and to receive his IV chemo called vincristine. Vincristine is derived from the periwinkle, so one could be fooled into thinking it must be a rather mild drug. However, when the nurse administers it she must wear gauntlets (long rubber gloves that come well up the arm), apron, and eye protective splash guards. All of this is because even a tiny amount of this clear liquid will almost instantly destroy any living cells it comes in contact with.  Once injected into Joseph’s IV line it quickly passes through the heart and is dispersed throughout the body. It fights Leukemia by making it impossible for cells that are dividing to have the internal structure needed for them to survive. It is certainly not something that you would think about injecting into your child and of course can have a number of serious side effects. So each time he receives this I am reminded again of his need of God’s grace.

Joseph continues to do well at home and has been very active with his brothers. It was ironic that on the day that I wrote about Joseph sleeping better, he woke up three times that night needing comfort. However, he is still resting better that he was a few weeks ago.

This week results from Joseph’s blood test showed that his neutrophils are still low and that places him at risk of infection. So again his daily oral chemo has been cut back to a half dose to allow his bone marrow to recover.

This past week Joseph’s great grand mother, ‘Granny’, died at age 90. She had successfully raised a large family, enjoyed excellent health and had a keen mind. However, her health had taken a significant decline about the time that Joseph was diagnosed with Leukemia. It seemed that her health continued to go down as Joseph’s health improved. We feel blessed that Joseph and his brothers had the opportunity to know their great grandmother and experience her love.

One thing that struck me about Granny’s death was the pain and sadness that we experienced. The pain was due to the rending of the bonds of relationship and love. Granny was woven into our lives and now she has been torn away and we feel pain.

However, there is another reason that death and disease cause pain and sorrow. That is because it’s NOT supposed to be this way. While the naturalistic view of the world sees death as the driving force in the development and adaptation of life, our instincts tell us differently. While certainly normal, as death is universally common, it is not natural. We were made to live forever, and our inner most being knows this, which is why we loath and fear death so much. It is the great destructive fracture in creation, caused by the hammer blow of sin.

We often don’t think of our individual sins as being very significant but if we see each one as something able to break the universe or lead to the death of billions of people we see why sin is such a big deal to God. Sin is much more significant than nuclear weapons.

So why does God not just get rid of death? He could, but it would mean getting rid of all sin and that would require getting rid of all sinners – that would include you and me as well as every other person on the planet. It is because of God’s great love for us that He allows death and disease to continue, for it provides time for those who have not come to Jesus to receive full forgiveness of sin. So Granny died, Joseph has Leukemia and many others are suffering today so that others might have the opportunity for eternal life.

However, soon, Jesus will return and do away with sin, and death. He will remake creation. Then all who are His will live forever in this new world without sin, sorrow or death. It will be the most wonderful day, for those who have surrendered to Jesus.

Will you be among them?

I tell you this, brothers: flesh and blood cannot inherit the kingdom of God, nor does the perishable inherit the imperishable. Behold! I tell you a mystery. We shall not all sleep, but we shall all be changed, in a moment, in the twinkling of an eye, at the last trumpet. For the trumpet will sound, and the dead will be raised imperishable, and we shall be changed. For this perishable body must put on the imperishable, and this mortal body must put on immortality. When the perishable puts on the imperishable, and the mortal puts on immortality, then shall come to pass the saying that is written:

Death is swallowed up in victory.                                
O death, where is your victory?                                    
O death, where is your sting?

The sting of death is sin, and the power of sin is the law. But thanks be to God, who gives us the victory through our Lord Jesus Christ.

I Corinthians 15: 50 – 57

Since the last update on Joseph we have seen a wonderful answer to prayer. We asked that people pray that Joseph would be able to sleep through the night as he was up just about every night and needing a lot of interaction. Since that request was posted, Joseph has slept each night in his bed all night. About half of those nights he has not woken up at all in the night. On the others, he has woken briefly needing a bit of comfort and then gone back to sleep fairly quickly. Thank you for praying.

Joseph continues to eat well and be very active, so over all his general health has been good. His treatment for Leukemia continues and last Wednesday when his blood work was taken, his neutrophils were low. So they cut his dose of chemo in half for the week to give his bone marrow a chance to recover. Tomorrow morning Joseph will go in for more blood work to see how he is doing. He will receive an IV dose of chemo and start five days of oral steroids. He continues to receive an oral dose of a chemo each night before he goes to bed.

It is wonderful to see our balding toddler going about his day and making longer and longer sentences, wanting to touch everything and desiring to do anything and everything his older brothers are doing. Sometimes he gets upset when everyone is going to the pool or to church and he has to stay with daddy or nanna. But then that seems to be compensated for by his trips to the hospital with daddy to see his friends the doctors and nurses.

During the weeks that Joseph was not able to sleep well it reminded me of that fact that God never sleeps and never gets tired. The need to sleep is a very human characteristic, one that Jesus shared with us while on earth. You would have to be really tired to sleep through a storm that was sinking the boat that you were in, but Jesus did exactly that. Yet, today we live in a 24/7 culture and take our smart phones to bed with us to extend our ability to know and do even further. But in the end it does not make us smarter or more powerful, as our mind and body just cannot keep learning and doing at full strength all the time. It is part of the humility of being a created being that we have to recognize The Lord is the one who gives us the capacity to work and learn. We are to use it to the full but then realize any good that comes from it comes from His hand – even the ability to sleep.

Unless the LORD builds the house,
those who build it labor in vain.
Unless the LORD watches over the city,
the watchman stays awake in vain.
It is in vain that you rise up early
and go late to rest,
eating the bread of anxious toil;
for he gives to his beloved sleep. Psalm 127:1-2

Highlight: Joseph celebrated his second birthday on 1st January and continues to do well with his treatments.

Prayer request: that Joseph would be able to sleep through the night again.

On New Year’s Day Joseph turned two years old. He has become quite talkative now and he was so excited about the cake as it was being made on New Year’s Eve. He was going about saying “Party! Party! Party!” It was a bit hard for him to take in that all the fun would be “tomorrow” but he was able to exercise patience.

You will see in the photo that Joseph received a hand knit ‘Paddington bear’ hat from his grandmother for his birthday. His hair is now very thin on top so the hat will help keep his head warm and remind us of his hair colour.

For the first few days of January, Joseph was taken off his oral chemo to give his body a chance to recover and build up his immune response. He was on 5 days of oral steroids and we are grateful that he has done well. His appetite was larger than normal but he did not have any major emotional melt downs (something that can happen very easily while on steroid treatment). Joseph continues to have a disrupted sleep cycle, usually waking up at least once during the night, needing comfort and some attention to his physical needs.

On Friday the 3rd of January I took Joseph in for blood tests and his immune response was the best since he was first ill. The doctors were pleased with the results and placed him back on his oral chemo.

On Saturday the 4th a couple of Joseph’s great-aunts who live in Canada came to see him. He had a great time visiting and playing. However, he fell over several times in the morning including one time where he hit his head on a coffee table. He was not seriously injured and soon recovered and was just as active as ever.

On Monday the 6th, Joseph went in for another blood test and for chemo treatment in his spine. Joseph was very unsettled the night before and was up much of the night. This made me particularly grateful when his grandmother, Marie, came by the clinic to become familiar with the routine of these outpatient visits. Though he had little sleep and was fasting that morning, Joseph did very well. Once awake from his general anaesthesia, he was ready to walk out! When we left the recovery room and started down the hall he shook off my hand saying ” Me, Me Walk”. And with a slight stagger in his step, he walked on his own all the way across the hospital and out to the car. We continue to be so aware of God’s grace to Joseph, especially on these days. The fact that he has tolerated these procedures so well and is walking (though a bit unsteady) is really just amazing.

Last night Joseph was walking about barefoot in the house and stumbled and caught the end of his toenail on his big toe on the floor. The nail was trimmed but the way he caught it tore the nail back and bent it in half. It then fell back into place and bled a bit. We called the hematology ward to ask for advice and we are now monitoring to see if he picks up a fever. However, once again we were surprised at his resilience. Joseph limped about a bit with his sore toe for about an hour and then carried on as normal.

Tonight is the 9th of January. Joseph is in bed and had a good day – learning activities with Kate and lots of play with his brothers, including time in a large cardboard box that was just the right size for him to sit up inside and have a snack.

Right now our biggest prayer request for Joseph is that he will be able to sleep through the night again. Most nights he wakes up between midnight and 4 am then wants to have dedicated attention or even breakfast. Sometimes he will go back to sleep but other times he seems to be very restless.

There was one other big event on New Year’s Day besides Joseph’s 2nd birthday and that was the 7th anniversary of my marriage proposal to Kate. Seven years ago she said yes, of course having no idea what was to come. But that is one of the wonderful things about marriage – the commitment, a vow to God, that transcends all situations.

I remember being nervous before the proposal. Kate was a wonderful person and I would be very blessed indeed if she would marry me but really, why should she?

Did you ever respect someone or love someone and wonder if they could respect or love you? What if you were not an ideal person – cranky, untidy, maybe even clumsy? What if you were really not very good – you had lied often, cheated, stolen? Could they respect and love you? Or worse, what if you had serious crimes in your life? Could you even tell this person about them? Surely they would never respect you and certainly could not love you.

Well that is one of the things that is so amazing about Jesus. He tells us that He knows us better than we know ourselves, and He is absolutely perfect and pure. Yet, He is willing to enter an eternal relationship with us, giving unlimited love and respect.

Father, I desire that they also, whom you have given me, may be with me where I am, to see my glory that you have given me because you loved me before the foundation of the world. O righteous Father, even though the world does not know you, I know you, and these know that you have sent me. I made known to them your name, and I will continue to make it known, that the love with which you have loved me may be in them, and I in them. John 17 : 24-26

Highlight: Joseph’s neutrophils are low again and he is at risk of infection.

Highlight: Joseph is doing well at home, though he is experiencing some side effects from his treatment.

Highlight: Joseph has been chosen for a treatment protocol for the last 2.5 years of his treatment that could result in fewer long term side effects.

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These past two weeks have been good ones for Joseph, including a wonderful Christmas here at home. Joseph has had a good appetite this past week and enjoyed his Christmas dinner and treats. In the picture Joseph is helping prepare the brussels sprouts for Christmas dinner. One of the “side effects” of all that Joseph has been through the past couple of months is a sense of gratitude among us at just being together and at home for Christmas. We have had a much less “packed” Christmas season and have had more time with each other, even if that means it is in care giving.

Last week Joseph was settling well at night but this week he has been very unsettled. We are not sure what has caused it (could be a side effect of chemo) but he is is often up several times during the night, more so than Ezra the new baby. Fortunately there are no serious problems, just being unsettled and needing support and comfort. However, this can take hours each night.

Another side effect from the chemo that Joseph has experienced is more stumbling and falling. The drugs weaken the muscles and fine balance so at times he can be trundling happily along playing and just tumble over. While he is picking up a few bruises on his knees, he is not being slowed down a bit. Each time he just picks himself up and keeps going. We have been told that some children go off their feet completely during this frist six months of treatment. We are grateful to hear that after these first months of more intense treatment Joseph should regain full strength and balance.

On Friday I took Joseph in for another round of outpatient treatment and his blood work indicated that his neutrophils had dropped by more than 50% in the past week and he is now back down to the level where he is at great risk of infection. The drop is a side effect of his oral chemo he takes each night. This week he will taken off that drug to allow his body to recover a bit.

This week, Joseph will have 5 days of oral steroid treatment. Joseph will receive a dose in the morning and the evening at home. Steroids have many possible side effects and two that Joseph will have is a great increase in appetite and a much lower threshold for frustration and irritation.

It may start to sound like we are dealing with lots of side effects from Joseph’s treatment, but we are very well aware that we are dealing with very strong drugs working on a deadly illness which a generation ago killed everyone who was diagnosed with it. So in that context, the side effects seem quite reasonable.

However, there are some side effects that can build up over the three years of treatment that can have life long impact on Joseph’s well-being. Now that the UK has a treatment process that is generally very successful against leukemia, studies are being done to see if the treatment can be altered to reduce long-term side effects. Some of these are learning difficulties, bone growth problems, heart, lung, liver, kidney, reproductive and skin issues that can arise due to treatment. Because of research done in the past ten years, the doctors have been able to determine that Joseph has a form of Leukemia that should be treatable with less intense treatment than the standard protocol. He has been offered and we have accepted a trial treatment that could greatly reduce his long-term side effects. The part of his treatment effected by this trial starts this summer and will continue until the end of his three years of treatment.

Until this summer, Joseph will be receiving the standard treatment protocol and that will be very challenging at times. But again, we feel blessed that Joseph has the opportunity to receive such good quality care and doubly blessed to have so many who have expressed a desire to pray for him. We feel that prayer has been absolutely at the core of his good progress and his protection from so many possible infections.

As I was watching our children enjoying their Christmas gifts, the Jesus’ birthday cake, and having their grandparents over for Christmas dinner, I was reminded of another side effect that the Bible warns us about in Deuteronomy 6:10-12. It is an odd side effect of God’s blessings – that of a cold, self-sufficient heart that forgets about God. It is a very strange thing that one of the most dangerous things God can do for us is to bless us, as it gives us an opportunity to focus on the blessing or the good thing, rather than the One who gave us the good thing.

It was wonderful to have my beautiful wife beside me, my four boys at my feet, Joseph doing well, and all sitting by a warm fire. What a lovely Christmas – but all of that is just a “good thing”. Christmas is really all about Jesus, who came into this shattered world as a baby, to live for us and die in our place. He came because He is our ONLY hope of rescue from sin, death and eternal punishment. Immortal God, became a man, lived among us and loved us enough to pay all that we owned, even when we ignored, mocked or even desired to kill Him.

Without Christmas we would have nothing but a short painful life full of sorrow and distress followed by endless hopelessness and regret. How could such an amazing gift be overshadowed by our toys, food and Christmas lights?

His gift of life and rescue from sin is there for you, as close as a whisper inside your heart. Ask Him, He promised, and He will give it to you freely, forever.

Jesus said to them, I am the bread of life; whoever comes to me shall not hunger, and whoever believes in me shall never thirst. But I said to you that you have seen me and yet do not believe. All that the Father gives me will come to Me, and whoever comes to Me I will never cast out. For I have come down from heaven, not to do my own will but the will of Him who sent Me. And this is the will of Him who sent Me, that I should lose nothing of all that He has given Me, but raise it up on the last day. For this is the will of my Father, that everyone who looks on the Son and believes in Him should have eternal life, and I will raise him up on the last day.  John 6: 35- 40