Many people told us that the blog was not working correctly with Facebook. A lot of work was done yesterday to fix that. It should now interact with Facebook just fine. However, all that work blocked me from making any updates yesterday so this entry will be double length.

Highlight: Joseph is expected to receive a  chemo treatment today. Each person reacts differently to it. It is so strong that I will have to wear protective apron and gloves to change his nappy (diaper).

Highlight: Yesterday a blood clot was found in Joseph’s leg where the line in his groin was removed, he will now receive 7 days of blood thinner treatment for that.

Highlight: Joseph was up on his feet and playing with a toy kitchen brought in by our church here is Belfast, he loved it and it was the first time he has stood up in almost two weeks.

Highlight: Visit from doctors yesterday was all smiles, many commented on how good he looked, and how well he was responding to treatment so far.

Highlight : I was told yesterday that Joseph is already mounting a tiny immune response, so it appears that his bone marrow is trying to regenerate already, but the treatment that starts today will destroy that new bone marrow on its way to purge the leukemia from his body. This will place him at a very high risk of infection for the next 4 to 6 weeks. We know that this deadly bacteria could still be lurking about in his system and it could reemerge  at any time.

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From the Highlights you can see that there is a lot going on. I will go in reverse chronological order as I would like to keep the prayer focus on Joseph’s chemo treatment today.

It is almost 6 am here and Joseph is asleep, and Marie reports that he was resting well. I don’t know the schedule today but at some point he would be due for a chemo treatment through his new semi-permanent line. This drug is designed to disrupt the DNA in fast growing cells with the idea that it will wreck havoc on the fast-growing leukemia cells. The bad thing is this will also effect other healthy fast growing cells in his body. Reactions can vary greatly. As a father it is very uncomfortable to see a very toxic substance introduced into my little boy’s body.

Last night Joseph was very chatty with his grandmother and ate berries and toast and had a grand time.

Yesterday evening Joseph was given a special injection with a drug delivery device that will stay in for 7 days and deliver blood thinner to combat the blood clot they found yesterday. This little device was used in order to spare him an injection each day for 7 days.

For dinner yesterday Joseph ate a very hearty portion of pasta Bolognese, a large portion of cooked carrots, 8 grapes and a cup of water. It was a long, slow dinner with Joseph pointing to each specific bite that he wanted and then wanting to share some of those with me. I think we both loved the interaction as much as he loved the food.

Before dinner Joseph had a very deep and restful nap.

Before his nap he had a mouth treatment for the oral thrush and to reduce other mouth pain. These treatments are in themselves very painful. I generally have Joseph on my knee while a nurse does the needed work. I do not like for Joseph to be in pain, but these mouth treatments leave his mouth pain-free for many hours. During that time he will eat and drink freely. Without the treatments he will be sitting there drooling with hunger but not putting anything in his mouth.

Joseph had an ultra-sound done of his leg to check for the possibility of a blood clot since he had that line in his leg over a week. They did find a small clot and will be treating it, so it does not become a risk to him.

Before the ultra-sound Joseph and I had a visit from a representative from a local cancer charity. She was talking to me about the things that they could offer our family in support during this difficult time. As the conversation progressed I told her about the highchair that we were using right then for Joseph’s lunch that had been given to us by the local church and the toy kitchen that he was playing at this morning. Then the meals, house cleaning, activities for our other children, clothes washed, errands (messages here in NI), emails, texts of support, and thousands of people praying.  I was then asked “Wow, what church do you go to?” I told her it was Stranmillis EPC here in Belfast, but that many churches were encouraging us including my home church in the US, Briarwood. She replied “That is wonderful that you are being supported so well,” and I explained “this is what the Bible talks about when it speaks of “The Body of Christ” here on earth.

Before lunch, one of the consultants (in the US we would call these “specialists” I think) and a research nurse came in to talk to me about Joseph’s treatment and the study they are doing that may reduce some side effects of treatment. We talked for over an hour about the treatments and the risks. The whole time Joseph sitting on my knee wide-eyed and listening intently. Toward the end of the conversation Joseph began to rub around his nose and tap me on the arm. He needed my help, he had some dried mucus in his nose (I won’t try to cover the UK and US terms for this). This was annoying him and he wanted me to help get rid of it. So I laid him across my knees and began working with a cotton bud (US Q-Tip) to get it out as we continued this very serious conversation.

Before the visit about the study, Joseph had a great time working in his new toy kitchen that was set up in the corner of his hospital room. I was sitting behind him in a chair in case he had any problems. At one point he did bend down and totter over, and I caught him. His legs were weak from weeks of inactivity. It was great to see him so engaged.