Results To Come

Back To Building
Back To Building

Thank you for praying for Joseph. The day went well. After getting his morning blood test we found that his neutrophils were 2.5 – which is the bottom end of “normal” for most people but great for Joseph under treatment. After his check up we went home where Joseph’s brothers had come up with a number of activities to keep him busy and not thinking about his fast. Time flew by and it was time to go in for the procedure. When it was all done he was up and ready for a snack and to go home and play (see photo above).

Now we wait for the result of the bone marrow test. We were told it would be several days before that result would be back. It is an interesting time – waiting for the results. If any abnormal cells are found we would be off on another trying journey. If the results are clear then we move on to the next phase of learning how to be “normal”. Once treatment stops on 27th of December it will be time for Joseph’s body to recover from 3 years of daily treatment. It will be a time for his bone marrow to grow back healthy and strong but a time of vulnerability as all that takes place.

So should we be worried about Joseph? What if his test shows abnormal cells? What if his immune system does not heal well? What if leukemia cells come back in the next couple of years?

We could worry, but that would just rob us of sleep and peace and wreck our health and do nothing for Joseph. We could put on our rose colored glasses and assume that nothing bad  can happen to Joseph because we follow Jesus. But then we would have to ignore that Jesus Himself told us to expect to suffer in this life. We could just see whatever happened with Joseph as his “fate” – that there really was nothing to be done either way, that all things are “just the odds”.

What we see is God says that He loves us and He tells us that we are in a good creation that is broken by sin. We ourselves are broken as well, though originally we were the highest expression of God’s creation – image bearers of the creator. Leukemia is a twisting of the beautiful design of  the hematopoietic, or blood-forming, system.  God has shown us that this world is not a “clock-work” he has set up to run on its own, but He says in the Bible that He is actively sustaining and maintaining everything. Jesus also showed us that He was very concerned about the personal health and well-being of people – the most important thing was spiritual well-being but Jesus spent a great deal of time healing people and intervening in the tragedies of life – sickness, chronic disease, disability and death. Jesus also told us that if we wanted to know what God the Father was like – just look at Jesus. So if Jesus spent so much time on intervening in the “normal” experience of this broken world then God the Father is just as interested in those things as well. So we can, with great openness come to Him for help. However, we also know that God does not always intervene in a way that we see or the way that we would like. Jesus himself was given a hard assignment in this world – one in which He himself suffered greatly. And Jesus gave hard assignments to many of his followers. But with those hard assignments come two great promises that never fail:

He will always be with us.

He will bring good out of everything if we love and follow him.

These past three years we have seen these two great promises fulfilled over and over so we don’t doubt that He will continue to fulfill them no matter what the future holds.

We have been blessed with a wonderful medical team who have served us and Joseph so well. Medically, Joseph’s prognosis is good and we rejoice in that. But in Jesus, Joseph is secure.

 

Blessed be the God and Father of our Lord Jesus Christ! According to his great mercy, he has caused us to be born again to a living hope through the resurrection of Jesus Christ from the dead, to an inheritance that is imperishable, undefiled, and unfading, kept in heaven for you, who by God’s power are being guarded through faith for a salvation ready to be revealed in the last time. In this you rejoice, though now for a little while, if necessary, you have been grieved by various trials, so that the tested genuineness of your faith—more precious than gold that perishes though it is tested by fire—may be found to result in praise and glory and honor at the revelation of Jesus Christ. Though you have not seen him, you love him. Though you do not now see him, you believe in him and rejoice with joy that is inexpressible and filled with glory, obtaining the outcome of your faith, the salvation of your souls.

1 Peter 3-9 ESV

 

 

Last Lumbar Puncture

Prayer Request : Joseph will have his last Lumbar Puncture with chemo for his central nervous system. He will also have a last bone marrow sample taken to confirm that his leukemia is in remission. It will be a day of fasting for Joseph so please pray for a good day for him, no complications from the procedure and a good report on his bone marrow sample.

This past week Joseph’s neutrophils came up a couple of more ticks from .8 to 1.0.  This was good news and meant that he can have his last lumbar puncture on Monday the 5th of December as planned.

It is a big day for Joseph and us as a family. Once he has the procedure he continues to take oral chemo on a daily basis until the 27th of December – when he will be taken off all chemo and his immune system will begin its recovery process.

Thank you for praying for Joseph.

Gratefully Home

Prayer Request: Joseph’s immune system is especially low – please pray for protection and recovery.

Joseph and Brothers

 

For those who were praying – Joseph’s fever broke in the early hours of Saturday morning local time  sometime between midnight and 06:00 am. After days of fever we we were glad to see Joseph comfortable and chatty. However, the medical journey on this “camp out” was not done yet. Blood and urine tests indicated that there was a question about kidney function – was it showing us a sneaky infection in this kidneys that was hiding behind a viral infection? Or was this just stress on his body working its way out? After another day of observation and tests it was determined that kidney function was recovering and there was no indications of any hidden infections. So we were given the all clear to go home  Sunday afternoon- but with the news that Joseph’s neutrophils were 0.3 – meaning that he has very little immune capacity right now. One line of thought is that the virus that Joseph had put a lot of stress on him bone marrow and that has caused the suppression we are seeing – it may continue to go lower before it recovers so until those numbers tick back up he will be at an elevated risk of infection.

This is our longest stay in the hospital for the last 2.5 years. We are so grateful for Nanna – who came in every night to sleep over with Joseph. We are also grateful for the medical team who served us during our “came out” – they were so caring, supportive and skilled.

All of this shows us just how much grace we have received as there are many families who have had more frequent and longer “camp outs”.

If you were to look at Joseph this moment he would look healthy to you but what we can’t see are all the secret workings inside his body.

This reminds me of the situation that we see fairly often in the news where someone who seems “normal” suddenly does something horrible. To look at them on the outside you would never guess that they would harm someone else.  It is because we can not see the secret inner workings of the heart with the sin that dwells there that we end up shocked. And even more so we have a hard time looking into our own hearts to see what lives there as well.

We are grateful that Joseph is now free of infection. In our case of our heart though  there is no drug to fix our sin problem. What is needed is not a “fix” but to be recreated into new beings.

 

Therefore, if anyone is in Christ, he is a new creation The old has passed away; behold, the new has come. All this is from God, who through Christ reconciled us to himself and gave us the ministry of reconciliation; that is, in Christ God was reconcilingc the world to himself, not counting their trespasses against them, and entrusting to us the message of reconciliation. Therefore, we are ambassadors for Christ, God making his appeal through us. We implore you on behalf of Christ, be reconciled to God. For our sake he made him to be sin who knew no sin, so that in him we might become the righteousness of God. 2 Cor 5:17-21

Sneeze, Cough, Fever

Prayer Request: Joseph is in the Hospital with a fever. It is a bit stubborn so we would ask that you pray that his fever breaks. (it hit 40.1 C or 104 F tonight)

A couple of days ago Joseph developed a cough that was just like the one his brothers have had for the past two weeks and are now almost done with. The difference with Joseph, however, has been that he has now developed a fever to go with his cough, so we are in the hospital for monitoring and iv antibiotics. What has been a bit unusual is that this fever keeps coming back after a dose of Calpol (like children’s tylenol for those in the USA). Tests for bacterial infection have not  shown anything so far and now there are new tests being run to see if there are any particularly nasty viruses. So far his overall heath is good except for the fever.

This will be his second night in the hospital – we are so appreciative of the medical staff and doctors who really care about Joseph and are doing their best to make sure that there is nothing dangerous hiding behind his symptoms.

So we are waiting… Waiting for Joseph’s fever to break and waiting for test results to show if there is anything more to be treated. I would say that waiting is one thing that our technology does not help us with. No one likes to wait – we all enjoy using the Internet to get instant answers to our questions, to use online shopping to get what we want delivered next day. But when it comes to the important things in life, like finding our life mate, restoring health, resolving deep problems, learning more about God – these things all take time and waiting. There is nothing fun about waiting as it feels like a waste of time. But in waiting we begin to hear from God rather than the noise of our gadgets. God is not my vending machine. His thoughts are boundless, His love monumental – He delights in providing for us but He delights in genuine relationship most. Don’t waste your waiting.

 

Behold, the eye of the Lord is on those who fear him,
on those who hope in his steadfast love,
that he may deliver their soul from death
and keep them alive in famine.
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 – 22

A good day

Thank you so much for praying for Joseph today. Everything went very smoothly, from small details like car parking at the hospital to Joseph’s fasting and the procedure itself.

Joseph even had energy during his fast to work on his strong man routine of bending steel bars.

joseph-with-pipestrong-man

When we came home from the hospital I asked Joseph if his day had been as good as he had hoped it would be and he agreed that it had been a great day. So thank you once again for your prayers.

Lumbar Puncture

When Kate told Joseph this evening that he would be having a lumbar puncture tomorrow (Monday) his face immediately lit up. “Yay!” he cheered. “That means I get to have a day at the hospital! And that’s good!”

Thanks to your prayers, Joseph has been blessed with much grace during his lumbar puncture days.

Please pray that God would again give him grace for his fasting, he would be protected during the procedure and that the treatment would be effective in purging Joseph’s body of all leukemia cells.

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.

IMG_3327

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