Highlight: Joseph’s line was successfully removed and he has been preserved from infection despite having almost no immunity several times.
Prayer Request: That the balance between Joseph’s bone marrow and the chemotherapy would stabilize; for continued protection from infection; and for protection during Joseph’s next lumbar puncture on 18 August.
Thank you for praying for Joseph on Monday 9 June. He had a successful lumbar puncture and protective treatment of his spine and central nervous system. The doctors were also able to remove his semi-permanent line. When I went in to meet Joseph after he woke up from the anesthesia I found him chatting with the nurse and drinking a bit of juice. Joseph looked down and found that “Mr. Wiggly” was missing from his arm and a new big bandage was in his place. I explained that “Mr. Wiggly” was all done and that Joseph did not need him any longer. I was not sure how Joseph would respond to this sudden change. However he was ready to go home and tell his brothers about “Mr. Wiggly” being gone.
Once Joseph’s wound healed from “Mr. Wiggly” being removed we decided to move Joseph back into the room with his brothers. This was a big change from being in an impromptu extension to mummy and daddy’s bed. We were not sure how Joseph would adapt to being with “The Big Boys”. Yet, within a couple of nights Joseph was sleeping through the night. He was one of the Big Boys again and everyone was happier.
All along we continued to go in to the hospital every week or fortnightly for Joseph’s check up. A few weeks ago the results from Joseph’s blood test showed that his blood was moving back to a normal healthy range. This was a sign that his bone marrow was starting to recover and it is a signal to the doctors to increase the dosage of his oral chemo drugs. After a week on the new dosage level, Joseph’s neutrophils crashed to 0.3. Anything below 0.5 means that he is at extreme risk of infection. Joseph was given a “chemo holiday” where he is taken off all his drugs to allow his body to recover. At home we double checked the packed bag we always keep by the door should be need to take Joseph to the hospital for an infection.
However, the Lord sustained Joseph again and he did not develop an infection. During that week the weather was lovely and Joseph and his brothers were very active outside. Joseph even helped me with a small woodworking project.
The next week we went back to the hospital to have his check up and his blood levels were back in “therapeutic range”. If a normal heathy person had these same numbers they would be considered VERY ill. However, for Joseph this is just the place they would like to keep his blood levels and the chemo drugs were started again. The reason for this constant treatment is that the doctors know that even though no leukemia can be detected in Joseph’s body now, there are very likely a few rogue leukemia cells roaming about his body. The chemotherapy is designed to kill those cells and prevent them from multiplying. If the pressure can be maintained on the leukemia cells then eventually every last one of the rogue cells will die off and his bone marrow will be able to grow back without any leukemia. That is the reason that Joseph has more than two years of additional treatment ahead of him.
After a week on the lower level of chemo we went back in to the hospital for another check up and Joseph’s neutrophils had crashed again – this time to the level of 0.1. Joseph was put back on a “Chemo holiday” and as I walked out of the hospital with him I wondered if we would be back that day or the next as the result of an infection.
Yet, again the Lord sustained and preserved Joseph and he did not get ill. All that week Joseph was happy to play outside and we enjoyed seeing his hair starting to grow back in. It is coming back in RED! And though still quite short, we think there is a bit of curl as well.
This past week Joseph has been put back on his lower dose of oral chemo again and his latest blood test shows him to be safely in the therapeutic range. It will be another full week before we take Joseph in for another check up and we pray that his neutrophils do not crash again.
We asked the doctor if all of this fluctuation was normal and she told us it is very common for children to respond this way to treatment, especially this soon after intense chemo – the healthy bone marrow is still quite “fragile” and seeking to become well established.
What is not normal is how Joseph has been able to repeatedly have in essence no immune system and NOT get an infection. Once neutrophils are 0.5 or less it is very common for the normal bacteria that live in our bodies to run wild and cause an infection.
The Lord has been sustaining Joseph and we thank each one who continues to pray for him.
Joseph has been sustained so often that this exceptional situation almost starts to feel normal and that reminded me of the people of Israel in the desert after they were released from 450 years of slavery.
For 40 years something like one million people traveled about in the wilderness with no source of food or water. So, roughly, we can estimate that God was supplying 500,000 kilos (or about 1 million pounds) of food and 3,000,000 liters (about 750,000 gallons) of drinking water each day. That does not count water for washing, or food and water for flocks of sheep or other animals. Today it is common for people to dismiss this miracle that went on for 40 years as a type of mythology. But is it?
The Bible tells us that God feeds the birds of the air, and because of that we should not worry about where our food will come from. No one knows how many birds there are in the world but one estimate is about 300,000,000,000 – 300 Billion. These birds would eat roughly 7,500,000,000 kilos (roughly 15,000,000,000 pounds) of food each day, which is more than all the people in the world eat each day. Yet this food is not planted, tended, harvested or stored.
What God does is of such a grand scale and is so pervasive that it becomes easy to forget how extraordinary it is. Instead of standing in awe of what God does on a daily basis we tend to see it as ordinary.
If we will but look, we will see the hand of a loving God who is caring for us in a multitude of ways every day.
For this reason I say to you, do not be worried about your life, as to what you will eat or what you will drink; nor for your body, as to what you will put on. Is not life more than food, and the body more than clothing? Look at the birds of the air, that they do not sow, nor reap nor gather into barns, and yet your heavenly Father feeds them. Are you not worth much more than they? Matthew 6: 25-26