Highlight: Joseph was tested today for his neutrophils and they were almost ten times higher than last week! Well in the normal range.

Highlight: Joseph had a good day with his fasting and treatment today.

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Today Joseph received chemotherapy again through a lumbar puncture. He is required to fast from 8:00 am till 2:00 pm when they do the procedure. This means a bit of an early morning so that he can be up and dressed and have a chance to eat his piece of toast (really the only thing allowed) by 8:00 am. Once again Joseph was much more interested in playing then eating, when normally he is very hungry in the morning. When it was time to go I told him we would be going to see his friends at the hospital and he immediately dropped his toys and waved to his brothers saying ” Byeee, Byeee”.

When I took Joseph to the outpatient pediatric hematology department and took off his cap, it was full of his red curly hair. He is now rapidly losing his hair, but because of its color and the fact that it is long and curly it is not looking nearly as thin as it really  is. There is red curly hair in all manner of nooks and crannies in our home. We are preparing ourselves for a bald Joseph one day in the next few weeks.

Joseph was one of the first in to get his blood sample taken, afterward he was very focused on playing. While we were waiting the consultant came to find Joseph and was smiling. She said “looks like his neutrophils came in” and that was when she showed me the result that was almost ten times his last test result.

After all the paper work we went for our walk with the baby buggy but this time Joseph woke up about an hour before his treatment was scheduled. So we went to the outpatient surgical waiting area where he started playing and became very engaged.

Again, Joseph decided to catch up on some sleep while in the recovery. When I was called in he was looking very happy and rested. While he was sitting on my knee sipping some diluted orange juice another boy nearby on his fathers knee was saying “oh daddy my back is sore”. It really hit me how much grace Joseph has received. There he was happily sitting on my knee chatting away like he had just returned from vacation rather than a procedure under general anesthesia.

When we got home dinner was ready, and Joseph was ready for dinner. The last couple of days he has been eating well, but tonight he was setting new records. Then an hour after dinner he received his new oral chemo drug. This was a rather daunting procedure as it is cytotoxic – that means it “kills cells” – and has bright yellow warning signs on the box. I am required to wear rubber gloves when I give this to him to protect me, and it came with written procedures on what to do if it gets on your skin, splashes in your eyes or is spilled. Kate is not allowed to touch this as she is breast feeding Ezra. All of this leaves you with the impression that it is something you would not give to your toddler, however so far he is tolerating it well. It will be important that he and this drug get along as he will be taking it daily for the next 3 years.

Kate and I were commenting to each other that the one overriding feeling we have in the midst of this time is that of being overwhelmed – not by the circumstances but by God’s grace and kindness. So many have prayed for him and us, our local church has been so supportive, our extended family so sacrificial of their time, medical staff have been so kind and Joseph so brave and resilient. We could never have imagined how much peace and comfort we would find middle of the storm of cancer.

Though I walk in the midst of trouble, thou wilt revive me; Thou wilt stretch forth thy hand against the wrath of mine enemies, And thy right hand will save me. Jehovah will perfect that which concerneth me: Thy lovingkindness, O Jehovah, endureth forever; Forsake not the works of thine own hands. Psalm 138:7-8

Highlight: Joseph did very well with his day of fasting and had no adverse reactions to his treatment.

Highlight: Joseph’s neutrophils (type of blood cell that fights infection) are still very low – so low that he cannot receive part of his treatment until they come up. He is also very susceptible to infection.

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Joseph did very well on Monday. He was very interested in playing on Monday morning and really was not interested in food. When we went to the hospital he was again happy to see all his doctor and nurse friends. After we completed all the morning tests and paperwork I took Joseph in the baby buggy for a long walk. He fell asleep almost immediately and did not wake up until just minutes before his time in the surgical theatre. He once again slept longer in recovery than expected but once awake was soon ready to go and wanted to walk out of recovery on his own.

So Monday was a great day for Joseph – especially with his need to fast all morning. Thank you for praying for him (and me).

Prayer Request: That Joseph’s neutrophils will recover by next week. He needs them for protection from infection and in order to move on to the next phase of treatment.

It was during this visit for treatment that I was able to review the next phase of treatment with the consultants (US specialists). So far Joseph has had a very good response to all his treatment and his long term prgonosis is good with regard to Leukaemia. However, we had a talk about the percentages and the things that can work out in ways we would not like. So even though Joseph is doing well there are some long term side effects that could become a problem and, though not a high risk, there is still the possibility that Joseph would have a reoccurrence of Leukaemia, even after all his treatment.

Now to put all of that in perspective, fifty years ago a diagnosis of Leukaemia was a terrible thing. There really was no effective treatment and children would die within a short time of being diagnosed. Then some treatments began to be developed but almost all children would get the Leukaemia again within a year of treatment. Slowly over the decades lessons were learned and treatments improved until now children diagnosed with the version of Leukaemia that Joseph has have a very good chance of not just surviving the disease but thriving in later life. So Joseph has good “odds” of a full long term recovery, but there is still a real risk of serious issues both from side effects and reoccurrence of the disease.

We feel so blessed that Joseph is facing Leukemia at this time in history. He has already benefitted from so much medical progress. Yet all medical treatment depends on the response of the disease to treatment and how well the patient can tolerate the treatment. Again, we feel so blessed to see Joseph carried along through his treatment by so many prayers. As wonderful as all of this has been, there is always that tinge of uncertainly about Joseph’s future.

What a contrast to the new life in Jesus. I don’t have to hope that it will all work out or that the “odds” are in my favor because of the things that I do.  I have the clear words of the Bible – that if I belong to Jesus I have eternal life – for certain – with no lingering fear or doubt. And that is the source of our peace and comfort for Joseph’s future.

And the witness is this, that God gave unto us eternal life, and this life is in his Son. He that hath the Son hath the life; he that hath not the Son of God hath not the life. These things have I written unto you, that ye may know that ye have eternal life, even unto you that believe on the name of the Son of God. 1 John 5:11-13

We apologize to all those who are following Joseph’s progress closely. It has taken us two days to update the blog. Between caring for Joseph and Ezra and educating the older boys as well as catching up on household and ministry needs, time just seems to run away from us. We so value your prayers and will endeavor to keep up a timely flow of information.

Highlight: Joseph was judged to be in good health Wednesday and was released to go home.

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On Wednesday morning Joseph woke early and was feeling nauseated. He was given some medicine to help with that but it left us concerned that he might not be well enough to go home. It turns out that IV antibiotics can have that impact at times and no one was overly concerned. After a light breakfast he was ready to play and was full of energy.

When the doctors came to see us later in  the morning Joseph was playing and happy. When they informed me that he seemed to be in good shape all around and that we were free to go home I was feeling happy too.

I called Kate and she and the two older boys came to pick up Joseph and I. As we were leaving the ward in the hospital many of the nurses came to Joseph to say “bye, bye” and Joseph was waving and saying “BYEEEE, BYEEEE”

Joseph was able to take a nap and have a good time playing with his brothers the rest of the day. He continues to have some issues with nausea but is not being slowed down by it.

On Monday we will have another outpatient visit where Joseph must fast and visit the surgical theater for a lumbar puncture and more chemotherapy.

As we walk this journey with Joseph, Kate and I continue to be overwhelmed by the Lord’s goodness to us: first, in preserving Joseph from the deadly infection; second, for Kate’s mum, Marie, who has sacrificed so much of her life for Joseph’s care; third, for the Body of Christ both local and international who have prayed for Joseph, and written encouraging notes and texts, given gifts, cooked meals, done laundry, watched children at the last minute and dozens of other deeds of love; also in the provision of the wonderful medical facility and medical team who are available for Joseph’s care.

If you had told me six months ago that my 1 year old would be diagnosed with cancer and would be placed on chemotherapy I would have had nothing but a vision of pain and suffering. While there are indeed hard times in this journey, and likely will be many more, I would not have anticipated all the help, comfort, grace and genuine times of joy. That is because it is easy for me to project and anticipate how bad things might be and totally miss how good and present God is. Of course God knows very well what I am like (and apparently many others) as He says “DO NOT FEAR” over 100 times in the Bible. These commands of “Do Not Fear” are in really frightening situations: being surrounded by hostile armies, being in the middle of the desert with no food or water, in a time of famine with no food, hunted by military and political leaders and many other deadly serious situations. So it would be very rational to be afraid in these situations, yet God was commanding people to not be afraid. That is because their fear did not take Him into account. Everyday I can think about all that could go wrong and die a thousand agonizing deaths and none of it actually come to pass. Or I can look to the loving creator whose very breath gives life and whose words birth stars.

And Jehovah, He it is that doth go before thee; He will be with thee, He will not fail thee, neither forsake thee: fear not, neither be dismayed. Deuteronomy 31:8

Highlight: Joseph is doing well, but is still in the hospital.

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On Sunday night I posted about Joseph having a fever and us coming in for what looked to be less than 24 hours. It is now Tuesday evening and we are still here but hope to go home soon. What has caused the delay is the complexity of medical care for someone with leukemia. Children with low blood counts can catch a very wide range of bacterial and fungal infections, some of which are almost unknown in healthy people. To make this even more challenging, many of the normal responses to infection don’t appear the same in a child receiving chemotherapy.

So when Joseph was admitted, a whole range of tests were done to identify what was happening that would cause a fever. One of the things discovered was a drop in Joseph’s blood cell levels. It was not a huge drop but it showed that something was inhibiting the bone marrow. Joseph is also scheduled for the next phase of treatment that requires him to have a higher blood cell level than he has right now. So that adds to the complexity of his medical needs.

Monday was not an easy day for Joseph. He did not get to sleep until about 1 am on Monday morning due to the processing and tests that needed to happen on Sunday night. Then he needed to be up at 7:30 am for his early breakfast of toast as he would be fasting the rest of the day for his time in surgical theater that afternoon. Normally, I would take Joseph in the baby buggy for a long walk from 11 am till time to go to the surgery but this day it did not work out as he needed to be on the ward for IV antibiotics. So Joseph was really tired and hungry and thirsty. He spotted a cup of water in the room and pointed to it and started crying when I would not give it to him. I then tried to walk the halls with him but that did not help. He just kept pointing back to the room and crying. He became really distressed and even the nurses were getting concerned as several said “That is just not like Joseph”. Thankfully the list for surgery was not long on this Monday and we were able to go in at 2:30 pm.

As in the past I took Joseph in and set him on my knee while they start up the anaesthesia. Joseph goes to sleep in my arms and several people help me place him safely on the surgical table. I give him a kiss on the forehead and tell him I love him as I go out to wait while the lumbar puncture is done and the chemo is administered. My wait was longer than usual, very likely due to his tiredness. As one of the nurses said, “Now, he had a good wee sleep”. So when I went to recovery I had a new little boy who was sipping some water and sitting on a nurse’s knee with a smile on his face.

Though hungry, Joseph was still very picky about food. But when Marie came in to take over for the evening she had a load of healthy goodies with her and he ate well on Monday night.

On Tuesday he had a good breakfast and was literally running about in circles playing. Then in the afternoon he got a good nap in the buggy and ate really well at dinner. He was having a bit of yogurt when Marie came in to take over for the evening.

Now Joseph has been on IV antibiotics for about 48 hours and has also not had any elevated temperatures. So on Wednesday morning they will run a blood cell count test. If those results show improvement and he is otherwise healthy, we will be released to go home.

This whole episode has been a real learning experience for us as a family. We had been told to have a bag packed and ready should we need to go to the hospital quickly. We followed the advice but have been finding several things that would have been handy to have in the bag. We also are learning what it is like to be ready for sudden change. We can’t put our family life on hold so we are busy with many activities but all the while we know that we could need change our plans at any moment. It is much like waiting for Jesus’ return. We need to be about our business but also aware that at any moment all that we were so busy doing will be set aside for the great day of the Lord.

As were the days of Noah, so will be the coming of the Son of Man.
For as in those days before the flood they were eating and drinking, marrying and giving in marriage, until the day when Noah entered the ark,
and they were unaware until the flood came and swept them all away, so will be the coming of the Son of Man.
Then two men will be in the field; one will be taken and one left. Two women will be grinding at the mill; one will be taken and one left.
Therefore, stay awake, for you do not know on what day your Lord is coming.
But know this, that if the master of the house had known in what part of the night the thief was coming, he would have stayed awake and would not have let his house be broken into.
Therefore you also must be ready, for the Son of Man is coming at an hour you do not expect.

Matthew 24:37-44

Highlight: Joseph was running a fever tonight and we have been asked to come into the hospital for the night. They are running tests and have started an antibiotic for him.

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Today Joseph and I stayed home while the rest of the family went to church, since Joseph cannot be around any groups of people. All morning he was busy playing and talking to me and asking me to identify various objects so he could learn their names. When it was time to have lunch with the whole family he was a bit off his food but nibbled on a variety of things. Then there was afternoon nap; he slept well for about 90 min. Dinner was more nibbling and then it was our bedtime routine. I was thinking about giving him some pain killer for the four teeth that are coming in right now but decided to check his temperature  – he was almost to the warning level. A half hour later he had reached the warning level so we called the hematology ward and they asked us to come in for the night.

Upon arrival they ran a series of tests and set up an IV antibiotic. Joseph is now sleeping while I write this up. So far there are no major concerns, but just cautious vigilance. Joseph was already scheduled for a lumbar puncture tomorrow, so if the tests prove to be clear and his temperature goes down we would likely go home tomorrow afternoon.

Joseph was annoyed to be hooked up to an IV stand again, but other than that he has done really well. He has enjoyed meeting his nurse and doctor friends again.

So, are we discouraged at being back in the hospital again so soon? No, we knew that Joseph was at risk of infection so we are grateful to have such a good facility not far from our home and staffed with helpful and caring people. We would love to be home tonight but we would rather know that Joseph was safe.

As I was trying to help Joseph settle in I read Psalm 91 to him, something that Kate has done with the boys a great deal. That psalm ends with some wonderfully encouraging words:

he shall call upon me, and I will answer him; I will be with him in trouble: I will deliver him, and honor him. With long life will I satisfy him, And show him my salvation. Psalm 91:15-16

Highlight: The results of Joseph’s MRD test indicate that he is in the “low risk” group. That is the group of Leukemia patients who have the best chance to have a long term cure from Leukemia.

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It was a busy day and around lunch time Kate’s mother, Marie, came to see the boys and sent us off to have lunch together. We packed up Ezra and went to Ikea where we had lunch and looked at storage ideas. (Just the kind of date that married people love.) Just as we were siting down to lunch a call from the hospital came in. The MRD results were back early and Joseph was found to be in the “low risk” group. That means they did not detect 1 leukemia cell in a group of 50,000 bone marrow cells.  As we heard the news tears welled up in our eyes and we thanked the Lord for such good news as we laughed and smiled. We are not sure what the people near us thought had happened to us but we had the sensation of both a weight rolling off us and joy welling up in our hearts for Joseph.

He still has a long three years of treatment in front of him. The three years of treatment is because they know that there are still leukemia cells in his body. They just cannot be seen with the current tests. Even at the level of less than 1 leukemia cell in 50,000 healthy cells (a removal rate of some 99.998%), because there are roughly 37,200,000,000,000 cells in the human body, there could be almost 750,000,000 leukemia cells still in Joseph’s body. So they will continue to work at killing all the leukemia cells possible. But he has the best chance possible of a long term cure and of fewer long term side effects.

This good news transformed our Ikea lunch into a celebration, because Joseph’s long term prospects are good, even if he has short term challenges and difficultly ahead of him. In many ways this good news was like the Good News of eternal life in Jesus. There was nothing that I could do to make things work out. I could not make Joseph’s leukemia respond to treatment nor could I make Joseph’s body tolerate treatment, just as I cannot do anything to make myself right with God.

I could certainly invent my own “treatments” for Joseph but in the end they would kill him. I could also work really hard at trying to make myself righteous before God and at the end of my life find that I had failed. No, it is not enough to just receive the news from the hospital I still have to take Joseph in for treatment. And if I accept the Good News about Jesus I need to come to Him and be made new without trying to add my bit to it.

Just like a little cancer can kill, so too even a little sin kills us as well. Only the supernatural work of Jesus can really cleanse me until I am blameless before God. There is no sin too big nor too small for Jesus to cleanse and forgive if I will come to Him and ask Him.

Yet, I must ask Him. Jesus said that He did not come to save those who were convinced they were good enough (just like a doctor can’t treat someone who does not believe they are ill), but He came to save those who knew that they needed to be rescued. He also promised to never turn away anyone who would ask Him to rescue them from sin and He will do so with joy that far exceeds what we have felt for Joseph.

Just so, I tell you, there is joy before the angels of God over one sinner who repents. Luke 15:10

We took Joseph to see the consultant today and they decided to give him an immunoglobulin shot to provide him with 4 weeks of significant resistance to chickenpox. We are still not sure what Moses has. It could be early pox from a minor case of chickenpox or a dozen other things.

The shot was inter-muscular and the volume of medicine was such that two shots were required. The nurses came in and told me they would do a shot in each leg at the same time to reduce the amount of anxiety. So I stood holding Joseph with his legs wrapped around me. The nurses came up and counted “1,2,3…” and both injections went in at the same time. Joseph recovered in about 30 seconds. The doctors and nurses were impressed with his resilience. He was back to smiling and waving within a couple of minutes.

Upon returning home Joseph was back to playing full strength. While it is clear that Joseph is impacted by the chemo, he continues to have much grace and is very active and is in that stage where he is learning many words.

Joseph will go in on Monday for a lumbar puncture under general anesthesia where he will receive another chemo treatment of his spinal fluid. This is designed to prevent leukemia cells from developing there in the future. Joseph is also due a chemo drug he has not had before, yet it will be one that he will receive often over the next three years. Our prayer is that Joseph will have he same grace under this drug that he has had under the others.

Highlight: Joseph’s brother, Moses, has just been diagnosed as possibly having chickenpox. This is a very serious situation as Joseph has been home all weekend and will have been exposed, if Moses does indeed have chickenpox. For children with leukemia or immune disorders chickenpox is very dangerous.

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Today Joseph received outpatient chemo to complete his 5 weeks of induction treatment. He did not have a serious reaction to the chemo, though it did have an impact on his appetite.

On the way home from treatment Joseph was singing in the car. But as soon as we entered the house he began to scream and point to his head. I still have no idea what caused this but when he did this it made his brothers think he had been hurt at the hospital. This brought on an emotional backlash that showed us just how deeply concerned Joseph’s brothers are about his condition. Joseph for his part then saw a biscuit (US – cookie) on the kitchen counter and pointed to it. Once he was handed that, he was smiling and playing the rest of the afternoon.

After dinner the boys were being bathed and Kate saw a few red spots on Moses’ leg. Having been warned about the dangers of chickenpox for Joseph, I called the hospital and they told me to get Moses evaluated immediately. So at 9:00pm we were off to after hours medical services. By 10:00pm a doctor had examined Moses and determined that he COULD have chicken pox. We won’t know for sure for several days. We informed the haematology unit at the children’s  hospital and they called us back with instructions.

Since Joseph had been checked this morning when he was receiving his chemo, and had been healthy, the haematology doctor felt that it was unnecessary to rush back to hospital this evening. Instead, we should try to get a good night’s sleep and take Joseph in tomorrow afternoon for an injection which would help give him some protection from chickenpox.

Prayer Request : That Joseph does not get chickenpox

Highlight: Joseph handled his fasting time, the lumbar puncture and bone marrow sampling very well.

Highlight: The very important bone marrow sample was taken on Monday for his MRD (minimal residual disease) test that will tell us if the leukemia is gone from his body.

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Grace.

A simple word that we hear often but what does it mean? God’s grace is receiving good from God that we do not deserve. Actually, it is more than that. It is receiving good from God when we ill-deserve it. That is to say that we are not neutral. Rather, as we fight against God to be in charge of our lives, we bring destruction into our lives and the lives of others and add to the brokenness of the world. So we really deserve God’s judgement rather than kindness. Yet, because God is kind and loving, He pours out on us good things all the time, even on those who reject Him. Every day is full of good things from God but most of the time we never notice. On Monday the day was so filled with God’s kindness for Joseph I was amazed and grateful afresh.

After a great weekend at home with his family, it was time on Monday for Joseph to go back to the hospital for the day for treatment of his spinal fluid with chemo and for a bone marrow sample to be taken. It meant getting up earlier than the rest of the family and getting Joseph his breakfast of toast and dilute juice. After that he would be on a total fast until the afternoon. I was concerned that when his brothers came in wanting a more filling breakfast Joseph would be asking for the same. However, when the other boys came down all they wanted was toast and were so busy playing that they ate very little.

Then it was time to get Joseph in the car and take him to the hospital. I wondered if he would dread going back there and if he would have any strong negative reaction. Again my concerns were brushed aside by God’s grace. When it was time to get in the car Joseph started to say “Goodbye! Goodbye!” and was waving to his brothers. It was like we were going on a special outing.

At the hospital it was as if he were returning to see friends and have a good time. Every interaction, whether it was having blood taken or having a screening review to make sure he was healthy for surgical theater, was all positive. Every nurse and doctor was a friendly face and he was chatting and smiling the whole time.

After the formalities we had a few hours to wait before Joseph would be called to the surgery. So I took him in the buggy for a walk. Within a few minutes he was asleep and stayed asleep right up until it was time to go the waiting room.

Once we were in the waiting room Joseph was playing with toys until called to theater.  I went with him and held him in my arms until the anaesthetic took effect. While in the surgical theater a dentist looked at Joseph’s mouth in detail to see how he was recovering from the infection that had been there. The dentist came out with a huge smile – she had not seen him up close in weeks. She told me, ” There has been some loss of tissue from the infection but what is there now is healthy. This should not have any impact on his adult gums and teeth.” Then she added, “It is really amazing how well he has recovered from the infection”.

Her comments are added to those of other medical folks who have commented that it is amazing that he was not disfigured and that his eye was not impacted. The infection had spread widely in his face and the loss of tissue in this mouth just shows how much damage could have been done to the rest of his face, if not for God’s grace. Then 30 minutes later I was called to the recovery room. Only this time when I arrived he was already sitting on the knees of a nurse having a chat. Within a few minutes we were cleared to go home and we went to the car. Joseph was singing and enjoying a snack. When we got home he had some soup while his brothers finished their naps. Once everyone was awake it was play time again!

So from Joseph’s perspective, it was a day of seeing friendly doctors and nurses, playing with toys, spending time with daddy and then capping it all off by playing with his brothers. No fear, no reactions to treatment, no residual pain from treatment, no stress about fasting.

It was an amazing day.

Such days do not just “happen”. It was a gift from the Lord to Joseph and us. A gift that the Lord freely gave and one that was the answer to many prayers for Joseph. Thank you for praying for Joseph.

Now Joseph has another chemo treatment on Wednesday morning.  So far he has not had any negative reactions to these treatments but we do not take that for granted. Once that treatment is done, Joseph will have completed his “induction” block of treatment. Then we will wait another week to hear the results of the MRD test.

Right now Joseph is still VERY much at risk of infection. In the last few days we have seen families back at the hospital ward where Joseph has been due to their children picking up an infection and needing immediate treatment.

Prayer Request: That Joseph will continue to be infection free.

Joseph is Home!

The last three days were full of activity and uncertainty. Results of Joseph’s blood tests were going in the wrong direction for two days for him to be released to go home. There were also many preparations still to be made at home and we needed to be certified on safely maintaining Joseph’s line.

On Thursday it just did not seem possible that Joseph would be able to come home this weekend. His blood test results had gone down again. But later that morning one of the nurses asked me, “Were you able to get all the classes you needed to take care of Joseph’s line?” I told her that it did not look like things were going to come together for him to come home this weekend. She then said,” Well, I have certainly seen stranger things happen.”

That was when I realized my focus had shifted from what the Lord was doing to the limitations of what I thought was possible. Faith. That is what was needed.

Could I believe that the Lord could still bring Joseph home this week? Certainly He could if He chose to do so, but what would that require of us? We needed to be ready for the Lord’s action. So I called Kate and asked if she could come down for another lesson on Joseph’s line. She called friends at church and in a hour it was all arranged: two sets of people helping at short notice to watch the older boys and to help keep Ezra at the hospital so Kate could feed him when needed. Kate arrived and got trained.

Then we needed to get a number of things sorted out at our home and Kate’s father and brother David came down to do those things. I needed to get one more training in on Friday morning for Joseph’s line and the nurses created an impromptu class for me.

So by late Friday morning we had done or had in progress everything we needed to do to care for Joseph if he could come home. Now it was in the Lord’s hands.

When the doctors made the rounds on Friday they told me, “Joseph’s  blood test results are still low but they improved slightly. We have been discussing his situation and think that some of the other medicine that he is on is slowing down the response of his bone marrow. So we will remove that and send him home. He is so healthy it would really be better for him to be at home. If anything happens you can just bring him back.”

We were going home! And it had come about in the fullness of time, just when the Lord was ready. What a pity if we had not done our part in faith – we would still be at the hospital as we would not have been able to receive Joseph.

Once all the paperwork was done at the hospital Marie came to pick up Joseph and me. When we arrived home the boys were so excited. The first thing we did inside the house was introduce Joseph to Ezra. Joseph reached out to Ezra and began to pat his tummy. Both Elijah and Moses exclaimed “Joseph is a big brother. He is being kind to his little brother – Good boy Joseph!” Then Moses cried out “JOSEPH IS HOME!”

The first photo is Elijah and Moses giving Joseph some wee cars as a coming home gift. The next photo is the brothers walking off together to play and the last is Marie later sitting with all three boys on the sofa – enjoying the fruit of her labors – 35 days of  12 hour shifts caring for Joseph in the hospital.

Last night Joseph ate very well. It was really our first family meal since Ezra was born. It was, by the way, a donated meal from friends at church – one of more than 30 we have eaten this past 5 weeks.  After dinner the boys played and we all had a great night of sleep.

While it is wonderful to have Joseph home, he is still VERY much at risk of infection. We are monitoring Joseph’s temperature twice a day and it has been great. Then on Monday he will be fasting again for a visit to the surgical theater as an outpatient. He will have a chemo treatment in his spine and then a bone marrow sample will be taken for the very important MRD, Minimal Residual Disease, test. They will using this very advanced test to look at the genetic markers on Joseph’s leukemia cells. The test can detect 1 cell of leukemia in 50,000 bone marrow cells. If no leukemia is found in that test he will be officially classified as in remission and they will start the long series of treatments to keep him there over the next 3 years. If any leukemia cells are detected by the test then he would receive 14 weeks of more intense treatment to try to get him to remission. We would request prayer for Joseph’s MRD – that it will be accurate and our request is that he will be found to be in remission. 

We have seen a couple of examples of how much prayer has done for Joseph during his treatment. In talking to another parent about the lumbar puncture treatments that Joseph has now had several times, they told me it left their child very sore for over a day each time. In Joseph’s case, once he recovered from the anaesthesia he seemed to do very well. Then when we were getting Joseph’s supplies for home, we were given anti-nausia medicine. When I was given that I asked when we would give that to him and they replied that many children get sick after a dose of chemo. I said that Joseph had not really had that problem and they looked at his chart and said, “You’re right. He has been doing really well.” Just those two small things showed us again just how much grace is upon Joseph due to your prayers.