Highlight : The brothers were not able to be together today due to one who was running a fever and had a sore throat. It was very hard on the brothers at home as they had special toys to give to Joseph today and had planned other treats.

Highlight: Joseph has been very active at play.

Highlight: Joseph is being taken off of some medicines as his overall condition continues to improve.

_______

On Friday Joseph continued to challenge our creativity on what type of food might be interesting to him. Normally a good eater with a broad range of foods, his sudden lack of interest in many foods is clearly a result of the chemo therapy. One nurse told me that children on the drugs that he is on usually crave savory, spicy, and salty foods. So far this has proven to be true with Joseph.

Our meetings with the doctors were helpful and encouraging. They are pleased with his progress and level of general health. They have now removed another layer of medicines that were there to protect Joseph from infection in his mouth. They feel his mouth is in good condition and, while still vulnerable to infection, is not in need of 3 times a day preventive treatment.

Joseph’s blood test results indicate that his bone marrow is producing healthy blood cells of almost every type. They are far from being normal healthy levels but good progress is being made.

Later in the day there was additional discussion about the possibility of taking Joseph back home, maybe even as early as next weekend. He would still be taking seriously strong treatment but would be an outpatient most of the time. His life and ours will be much more restricted than in the past due to his risk of infection, but it would be very nice to all be at home together again.

We were told by a couple of nurses that Joseph would, at times, need the level of time and attention that an infant requires. He will also need extra protection from infection. So we are hastily rearranging our house in preparation for a possible homecoming. My home office will now take on the role of Joseph’s private room so that he can be near us at night and have the physical separation needed to provide an infection buffer.

In the middle of the work at home, one of the boys developed a fever and cough. A quick consultation with one of the doctors resulted in us cancelling the weekly get together for the brothers.  Joseph and everyone in our family will need to be healthy and free of infection and Joseph’s blood test results will need to show that he has developed at least a minimal level of immune response before he can come home.

On Monday Joseph will receive another of the inter-muscular chemo shots. Last time he did not have a reaction to the drug and got over the shot itself in about a minute. However, this drug is one that can cause reactions and it seems that even if you have tolerated it well in the past you have a fresh chance at a reaction each time you receive it.

Prayer Request: That Joseph will not have a reaction to the shot on Monday.

Prayer Request : That all of us will be healthy and that Joseph’s blood test will show he is able to come home soon. 

Some are asking if Joseph will lose his lovely red curly hair due to the chemo treatment. Already we are seeing some hair falling out. In talking to the doctors they say that he will lose all his hair for about the first 6 months of treatment. Then it will grow back. Sometimes the color and texture will change after treatment so we don’t know exactly what it will look like when it comes back. While hair is not a major life issue, Joseph’s red curly locks are a part of his identity. So please pray that the Lord will give Joseph grace for the time without hair and to accept and enjoy the hair he will grow back.

Highlight: Joseph did NOT suffer with his fasting today and did well in surgery. Thank you for praying.

___________

This morning Joseph was allowed some toast and Kiwi for breakfast with some water. After breakfast we walked the halls for a while, and then he tried to get a bit of rest in his bed. He was quite restless, just not really setting in. Then it was time for the doctors to visit. I was told that the surgery list was long and that it would likely be after 4:00 pm before Joseph could go. Then I tried to get Joseph interested in some play but he really just wanted to be on my shoulder. At 11:30 am I got permission to take Joseph off the ward in a baby carriage (lent to us by friends) for a long walk. So I bundled him up really nicely and we left just before lunch was served. I was told I should make sure and be back by 2 pm so that Joseph could receive his IV antibiotic. So we went on a long walk and Joseph was really enjoying being outside in the crisp air and sunshine. As I walked back Joseph fell asleep. Then while walking back up the hill to be back by 2:00 pm, my phone rang. It was the hospital calling to say they could take Joseph in surgery right now.

As I rolled into the ward they led me to the surgery and we waited just a few minutes before they called us in. Joseph was looking around at other boys and girls who were waiting and then asked to go to my shoulder. About that time we were called, and they gave him the anaesthesia while he was in my arms. Fifteen minutes later he was in recovery and I was holding him again. During that fifteen minutes, they did the bone marrow sample, the lumbar puncture and the x-rays his front teeth. The x-ray was because there has been a lingering concern that a knock on his mouth from a fall many weeks ago could have resulted in a point of infection. The x-rays were clear and he teeth are in great shape, however he is still teething and has four teeth coming in right now.

After we returned to the ward one of the nurses popped in and said “would Joseph like something to eat?” and that got a very big nod. Soon he was munching down on toast and a banana and humming in between bites.

Thank you all for praying.

Prayer Request : The bone marrow sample is one of the first diagnostic tests done to see what progress is being made against the leukaemia. If they find that 75% of the leukaemia cells are now gone from his bone marrow, that would place him in a least intense treatment class.

Highlight: Joseph received his inter-muscular shot today and he did not have any adverse reaction to the drug. He got over the stick in about 30 seconds and was ready to walk the halls with me for a couple of laps. Thank you for praying.

_______________

Joseph started the day with a good breakfast of toast, a whole kiwi, a banana and a cup of milk. Then came morning oral medicines – his steroid and a drug that is to protect his gut from the steroid. Then he had mouth care. Right now his mouth is still rather sore as the infection seems to have been around his mouth. After all the antibiotics he got oral thrush. This is very sore as well. So we have to scrub his mouth with a small sponge containing antiseptic on a paper stick. After that we scrub his mouth with another set of sponges on paper sticks that are soaked in something that numbs the sore places in his mouth. This treatment is very painful. Then after all those he gets an oral medicine  to combat the thrush in his mouth. Joseph has to have this procedure done about 3 times a day. Each time it is very unpleasant.

After Joseph had his oral medications it was time to walk the halls. I carry him and he looks about. Then, every so often, I let him down and encourage him to walk a bit. I have already done many miles on the hallways here and suspect that I will do many more before we go home.

After the walking, Joseph had a great lunch and then a time with a play therapist. While the play therapist was working with Joseph I grabbed a quick lunch. Then it was time for a nap. Unfortunately Joseph needed a scheduled IV antibiotic before his nap was done. He woke up while the nurses were connecting the IV to his semi-permanent line, something that is not painful, but it REALLY annoyed him. For the next hour Joseph was very upset and jostling about. One of the side effects of the steroids he is taking is an amplified grumpiness and Joseph was getting a full dose. After much praying, singing and assurance he was able to calm down and was good as gold the rest of the day.

Later Joseph had another great dinner meal and a snack later. Once Marie came in, he was ready for a few fresh strawberries that he saw in her bag. When I left he was happy on Marie’s knee.

Prayer Request : Joseph will have three procedures done under general anaesthesia tomorrow: a lumbar puncture to prevent leukaemia from developing in his spinal fluid; a bone marrow sample will be taken to monitor how well the leukaemia cells are responding to treatment; and lastly, a dentist will inspect his mouth and see if there is anything else we can do to reduce the pain he experiences there. Any general anaesthesia has risks so please pray for safety in surgery. Also please pray that he will have a really good report from the bone marrow sample.

Prayer Request : As you may have picked up, Joseph has a big appetite right now. This is augmented by the steroids. Tomorrow he must fast from 8 am until he goes to surgery, and right now that is looking like late afternoon. This will be a very long and hard day for a little boy who cannot understand why he can’t have food and water when he feels so hungry. Please pray for the Lord’s grace for Joseph in his fasting tomorrow.

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.

—–

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.

Highlight: Joseph come through the surgery safely and has his new semi-permanent line installed.

—-

There were problems getting the semi-permanent line in to Joseph as he is a small boy with small veins. Because of the difficulty he was in surgery an hour longer than expected. That was a very long hour for me as the previous two surgery’s were shorter than expected.

There was also a new sample of his bone marrow taken to see how the leukemia cells are responding to the steroids so far. This sample will be sent off for very detailed genetic analysis to help fine tune the treatment.

The dental staff came in and looked at his mouth and did not see any major problems.

The line that was in his groin has now been removed and we hope to see him up on his feet soon.

Right now Joseph is still feeling a bit groggy and tired and is propped up in  bed with some food in front of him. He is napping and then having a look around and then napping again.

Thank you for praying for our wee man