Joseph has now completed his treatment for leukemia and we have been reflecting on the journey we’ve been on over the past three and a half years.
Whether you are just joining us or have been with us on this journey from when Joseph was diagnosed with leukemia and a life-threatening infection in October 2013, we want to thank you for your love, support, encouragement and prayers.
We would love to have you join us as we express our gratitude to everyone who has supported us during Joseph’s treatment. Children are welcome.
Saturday 4th March, 2017
(doors open from 6.00pm: feel free to explore the trains)
We have received the good news that the results from Joseph’s bone marrow test were “all clear”.
When we called the hospital to check on the results a nurse answered and checked with the consultant. After she told us the news I said, “Sorry to have interrupted your work,’ and she replied, “Oh, it’s no problem – it is always a pleasure to deliver good news”.
Just finished Jesus’ Birthday Cake
This of course is the best Christmas gift possible for our family. Unfortunately, Joseph’s immune system is too weak to allow him to attend Church on Christmas or New Years Day (which happens to be his birthday).
Joseph will receive his last dose of oral chemotherapy on the 27th of December. Then he turns 5 years old on the 1st of January 2017. He will continue to take an antibiotic four times a week for 3 more months to provide protection as his immune system begins to recover.
Though Joseph can still easily get an infection, that does not at all diminish the Good News of a successful end of chemo treatment. It fits perfectly in a season for Good News – over 2000 years ago angels announced the birth of Jesus to shepherds. Some of the least important people in a most remote and obscure region get the most astounding announcement in history. So what did these uneducated, unwashed and unacceptable people do? They went to see what all the fuss was about and they met Jesus. Let us do the same.
And in the same region there were shepherds out in the field, keeping watch over their flock by night. And an angel of the Lord appeared to them, and the glory of the Lord shone around them, and they were filled with great fear. And the angel said to them, “Fear not, for behold, I bring you good news of great joy that will be for all the people. For unto you is born this day in the city of David a Savior, who is Christ the Lord. And this will be a sign for you: you will find a baby wrapped in swaddling cloths and lying in a manger.” And suddenly there was with the angel a multitude of the heavenly host praising God and saying,
“Glory to God in the highest,
and on earth peace among those with whom he is pleased!”
When the angels went away from them into heaven, the shepherds said to one another, “Let us go over to Bethlehem and see this thing that has happened, which the Lord has made known to us. And they went with haste and found Mary and Joseph, and the baby lying in a manger. And when they saw it, they made known the saying that had been told them concerning this child. And all who heard it wondered at what the shepherds told them.” Luke 2 : 8 – 18
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.
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.
Prayer Request: Joseph’s immune system is especially low – please pray for protection and recovery.
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
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
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.
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.
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”