Highlight: Yesterday homemade cream of chicken soup and today sweet and sour chicken were things that Joseph ate with relish.

Highlight: Joseph’s latest results from his blood analysis showed that most of his numbers went down, which is the wrong direction for going home.

Highlight: Kate and I are being trained in how to care for his needs at home. We just don’t know when that will be.

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Yesterday Joseph ate very little for breakfast, but at lunch home made cream of chicken soup was on offer and I tried it with Joseph. To my surprise he ate a bowl and a half. He was even saying “yummy”.

Today Joseph’s blood test results were back and he lost ground in almost all his numbers. We had been warned that the inter-muscular shot that he had on Monday can cause your bone marrow to become less active for a period of time. It looks like that may have been the case here. Before the shot he had about half the neutrophils he would need to be released to go home (which is still extremely low and leaves him at risk of infection.) Now he has about 1/3 the level of neutrophils that he would need to be released to go home on Friday.

Prayer Request : That Joseph will grow the blood cells that he needs for his health and for going home.

Kate and I are being trained in how to maintain Joseph’s semi-permanent line. On alternate days we will have to inject a fluid into his line to keep it in good working order. This procedure requires the utmost attention to keeping a sterile working environment when doing the line flush. Just touching your skin with the sterile gloves requires you to start your preparation all over again. Kate and I are being trained in how to do this procedure in a totally sterile way and have to be checked off by the training nurses before Joseph can come home. We are on track to be certified by Friday.

Today Joseph ate very little for breakfast and lunch but at dinner there was sweet and sour chicken on rice and he ate very well. Again it was something that he really seemed to enjoy.

While it was disappointing to see Joseph’s blood results going the wrong direction today, he was certainly in good form. He was laughing, singing, playing, chatting with the nurses, and giving one of the doctors a “high five”. So he is doing really well but his good health is fragile and we fully respect the caution of the doctors. We have been told that he could show the improvement needed on his next set of blood tests on Friday morning. Then again it could take weeks for him to develop the neutrophils needed.

We have not mentioned to our other children about Friday being a possible day for Joseph’s homecoming. They have been upset and really missIng Joseph. Yesterday one of them said he was “angry with the doctors for keeping Joseph so long”. Tonight we sat down with the boys and explained that the doctors and nurses really care about Joseph and are only keeping him to keep him safe. As soon as they feel it is safe they want him to come home.

It is at times like this that we recall one of the hardest disciplines in the Christian life, waiting on the Lord. In the Bible it speaks of “waiting on the Lord” hundreds of times. Over and over again God has shown that even though it looks like the “right time” for something to happen, He knows the perfect time for things. This is called the “fullness of time”. This means that God is doing a lot more than what we can see and is working on so many levels for so many goals that we just can’t grasp it. We can become impatient in this time of waiting – which to us seems like a waste of time – after all we would like our answer now, or be delivered from oppression, or have provision provided. But if we trust in Him, He promises that we will never regret it.

Therefore the Lord waits to be gracious to you,

and therefore He exalts himself to show mercy to you.

For the Lord is a God of justice;

blessed are all those who wait for Him.

Isaiah 30:18

Highlight: Results from Joseph’s blood test today show improvement in all areas but one.   He needs his neutrophil count to come up to provide more infection protection. (Neutrophils are a blood cell type that attacks infections.) The doctors tell us that he is on track to improve in this area. It just takes time.

Highlight: Joseph had his inter-muscular chemo shot today and did not have an adverse reaction.

Highlight: We are working hard to prepare our home and ourselves for Joseph’s homecoming. There will be many adjustments to be made as a family.

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Today Joseph continues to have a hard time finding food that appeals to him. We are working through a wide variety of options. The big winner of the day – tomato juice!

In talking to an adult friend who had to go through chemo for another type of cancer, they told us that while on chemo everything tasted rotten and smelled awful. Joseph does not have words to express this but he does point to his nose and ask me to clean it several times a day. I now suspect he is having this “everything smells awful” experience and is hoping that I can clean the bad smell out of his nose. It also helps us understand the frustration he expresses when a meal is brought in and he says that he is hungry but when he brings the food to his mouth he just shakes his head and pushes it away.  So far we keep finding little things that he can enjoy at various times in the day but  there is nothing that consistently works.

Prayer Request: That we will continue to find things that Joseph can eat and that we can find some things that he can actually enjoy.

We are finding that there will be some major adjustments for our home. Normally, we enjoy having people over for meals but we will now have to give that up for at least the next six months. I often travel with my work but that will need to change, at least during the term of Joseph’s treatment. Joseph will also not be able to attend church for at least six months, so one of us will have to stay home with him. Trips to shops with Joseph will be very restricted if not totally eliminated. Family Christmas time will not include Joseph and at least one parent. The number of children that can come play will also be greatly reduced and we will all have to learn to wash our hands very thoroughly multiple times a day. There are many other changes and restrictions but it is all about the main theme of reducing exposure to potential infection.

While the range of things that will change will be a challenge to us as a family, we are expecting the Lord to show us new things as a family that we would never have learned otherwise. It was when the Apostle Paul was locked up in custody that so much of the New Testament was written and it was for Noah’s protection that the Lord “shut him in” the ark. We know there will be challenges but we hope to find much that is good in this coming “intense” family time over the coming months.

Internet access at the hospital was down again for me the last two days, so this is a catch up posting. 

Marie is Joseph’s grandmother, better known as Nanna at our house. She has always been a delight to our boys as she is just as likely be to found jumping on the trampoline with them as knitting a hat or scarf. Though she has a very full life and schedule she has always made time each week to spend time with the boys and always has some healthy treat to share with them. The photo on top is Marie sitting next to Joseph during a family weekend away a couple of months ago. The photo below it is Marie celebrating her birthday with Joseph in the isolation ward of the Children’s Hospital in Belfast a couple of weeks ago.

Because Kate just had Ezra and is breastfeeding it is not possible for her to spend long periods of time in the hospital with Joseph. Knowing that I would not be able to stay with Joseph 24/7 on my own, Marie cancelled all her work shifts for the month of November and has been doing the 12 hour shift at night caring for Joseph this past month. Before that when Joseph was so ill at home, she came and stayed with us for two weeks before Ezra was born to care for Joseph. Many times she was sitting up all night with him, so she has actually been on the long night shift with Joseph for at least a month and a half.

Of course Joseph loves his Nanna and is very comfortable being cared for by her during the night. But what Joseph does not realize is his Nanna is a trained nurse as well, so he has had the privilege of personal nursing care. I’m sure that it never entered her mind when she was training to be a nurse that she would be using her skills for her grandson with leukaemia.

What is best of all about Nanna though is her walk with Jesus. Joseph did not just have a personal nurse each night but a grandmother who was praying through the night watches.

Marie is an example of what many families miss out on in our rushed lives that often do not have room for grandparents and extended family. What a blessing to have a heritage of faith that can be passed on to grandchildren.

But the mercy of the LORD is from everlasting to everlasting upon them that fear him, and his righteousness unto children’s children; To such as keep his covenant, and to those that remember his commandments to do them.

Psalm 103:17-18

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 Highlight: Joseph has continued to grow in strength each day this week.

Highlight: Joseph has had a very sore mouth as the result of the chemo, but in the last two days has had significant healing and has been doing better.

Highlight: One of the side effects of the chemo is a loss of appetite. It is not really a lack of hunger but the taste of things change and nothing seems very palatable. Some friends gave us a sweet and sour pork dish and Marie tried it with Joseph. The results speak for themselves – clean plate!

Highlight:  The doctors told Kate and I today that they wanted us to come in next week for some training on how to care for Joseph’s semi-permanent line. This will be in preparation for Joseph coming back home for much of his treatment.

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Joseph had some raw places in his mouth early in the week that were due to the chemo treatment. This made it extra difficult for him to find food interesting. However, in the last couple of days, extra mouth treatment and trying a wide variety of food options has seen his mouth improve as well as his eating.

Blood test results are showing that some of Joseph’s bone marrow is working. He is growing certain types of blood cells and we are told that soon we should see additional healthy types being produced as well.

Joseph’s over all immune system is still very low. Now it is a balancing act with the chemo treatment that keeps the leukemia knocked down but also impacts the level of healthy bone marrow when treatment is at its peak. As Joseph’s body responds to treatment things should start to stabilize. In expectation that this will happen, Kate and I have been asked to come in to receive some training on how to care for Joseph’s semi-permanent line. At this stage we don’t know if he might be allowed to come home in one week or many weeks.

In a couple of weeks Joseph will be tested for the level of leukemia in his body. The lower the result the better. The results of this test will set the intensity of his treatment for the next six months.

Prayer Request: That leukemia will be completely purged from Joseph’s body. 

I did not have Internet access in the hospital over the weekend so this posting will cover 2 days.

Highlight: The brothers were able to have a get together again on Saturday morning for half an hour. Once again they made the most of the time.

Highlight: On Sunday Joseph was right on the border of having a “fever”. Then during the evening his temperature would rise just into the warning range and then drop back down.  This is being closely monitored by the medical staff.

Highlight: We were able to set up a “Facetime” between Joseph and Kate & Ezra (his new little brother) on Sunday night. Joseph saw Ezra for 2 days before being admitted to the hospital so we were not sure if he remembered Ezra or not. Joseph was full of smiles to see his little brother and mummy.

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As you can see from the photos the boys had a great time on Saturday morning.  This time the situation was more familiar and Joseph was stronger so they just jumped right into play. Many delicacies were created that morning in the kitchen together but the smiles and giggles were the best part of the day for everyone.

Joseph is just starting to speak so it has been fun to walk the halls of the hospital ward and hear him practice a few words. He is also pointing to things and asking for their name A LOT. So I can be heard muttering as we walk down the hall together ” door, blood pressure cuff, IV pump, medical supplies,…” It will be quite an interesting vocabulary for a 2 year old to have.

Saturday we found a lovely park just outside the one of the gates to the hospital grounds. So now a visit to the park while out in the buggy is part of the daily routine, unless it is raining.

On Sunday Joseph’s temperature was bordering the warning range then jumped into and out of the warning range a couple of times. So far there does not appear to be great concern medically and he is doing well. So we are waiting to see if this is some fluctuation or the first signs of an infection.

Prayer Request: That Joseph does not develop an infection.

It is hard to believe that we are entering our fourth week in the hospital. Now I am starting to learn a bit more about leukaemia. It seems, in some cases, it can all start with just ONE bad cell that does not respond properly to the body’s control mechanisms. This cell then creates just one more exactly like itself and then those two do that again and again and again. Soon the bone marrow is so full of these harmful cells there is no room for the normal bone marrow cells that supply our blood and core of our immune system. It struck me how this is a picture of what sin is like. Most of us can’t see the harm in “little sins”, yet it was Adam and Eve’s choice to disobey God in what to eat and not to eat that broke the universe. Such a little thing, yet within one generation one of their sons would murder his brother.  Just like tiny leukaemia cells, that on their own seem harmless, so “little” sins soon choke out and destroy just like “big” sins like murder.  Thankfully, Jesus came to pay for all our sins, “little” and “big” as both are deadly.

Jesus paid it all. All to Him I owe.

Sin had left a crimson stain;

He washed it white as snow.

Highlight: A trace of blood was found in Joseph’s urine a second time and samples have been sent to a lab for further study. However, the doctors have said that there are no other signs of infection and have actually reduced the amount of antibiotics Joseph is taking.

Highlight: The ultrasound of the blood clot is scheduled for 3 weeks from now. There was miscommunication about the whole process and that has been cleared up. Joseph will continue to receive blood thinners for the next 3 weeks.

Highlight: Joseph had his second major chemo today and again there was no adverse reaction.  Thank you for praying.

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Joseph started his day early with Marie this morning, about 4:00 am, when he woke up very hungry.  A bowl of oatmeal (UK porridge) was the answer, and then he went back to sleep and had his second breakfast at 9:00 am.

After breakfast came the morning rounds from the doctors and the welcome news that they were not too concerned about the urine results, given all the other indicators, and were actually going to reduce the amount of antibiotics that Joseph is receiving.  This change will mean that Joseph does not need to be hooked up to the IV for an hour several times a day for an infusion of antibiotics.

After the visit with the doctors, it was time to walk the halls. Joseph cannot show up on the ward without being greeted by everyone. His red curls seem to always bring a smile.

After our walk it was lunch time and then time for a walk outside with Joseph in the buggy. After returning from our little outing, it was time for his medicines. Joseph was very relaxed. He just lay in the bed and hummed and chatted to the nurses while they gave him his chemo and other meds.

Then it was time for a short nap and afterward dinner arrived.  Joseph enjoyed his dinner and is having a post meal snack as I type this.

Thank you for praying for Joseph.

Highlight: Kate was able to spend some time with Joseph today and it was wonderful to see them together. Special thanks to all the friends who helped care for our other children while she was here with Joseph.

Highlight: Just minutes ago a nurse came in and told me that a trace of blood was found in Joseph’s urine. This can be nothing, just a one off blip, or it can be the first indication of an infection. More tests will be conducted tonight and tomorrow. Please pray that this is NOT an infection.

Highlight: Joseph will go tomorrow for an ultrasound of his thigh to see what the status of the blood clot there is. If it has dissipated they will remove the blood thinners from Joseph’s mix of medicines. 

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Yesterday and this morning were calm days for rest and recovery of Joseph’s wee body. He continues to be more interactive and this morning he was singing a wee tune during breakfast.

After breakfast Kate was able to come in for some time with Joseph. This requires quite a bit of coordination as one family watches the older boys and someone else comes and keeps the baby while Kate visits. It was wonderful to see our two red heads together again. Kate played blocks with Joseph and they had the kind of chat that only mothers and little boys can have. Joseph was smiling and even laughing, something that has been very rare this past month.

It is a huge challenge for Kate to have so little time with Joseph and of course Joseph misses mummy. We continue hope that if things go well Joseph could be back home with us in a few weeks, though treatment would continue for years.

After Kate had to leave it was lunch time and Joseph had another big lunch. Then we got him bundled up and went out for a walk with the buggy. He had a good time and really enjoys his time outside the hospital room. Upon our return it was time for his IV infusion of antibiotics. While that line was hooked up he took a nap. After the nap it was dinner time and Joseph had a great time with dinner. At one point he was chatting to himself  saying ” humm, humm, mummy, mummy, humm, humm, mummy, mummy” smiling  the whole time.  Kate had not been able to visit as long as she would have liked but the wee man  was still glowing from the time together.

It was just after dinner that the nurse came in and told me that a test of Joseph’s urine had a trace of blood. This could be nothing if it does not show up again but if it does show up again it could be the sign of an infection.

Prayer Request: please pray that Joseph does not develop an infection.

Prayer Highlight: Today we received two very encouraging medical reports.  There are many details and context to these so I will give details below.

1) 98% Reduction in Leukemia cells in Josephs bone marrow

2) The genetic makeup of Josephs leukemia is not resistant to standard treatment

We feel that Lord has been answering prayer in mighty ways. So far Joseph has not only been preserved but has responded VERY well to treatment. Thank you for continuing to lift him up to the Lord.

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Joseph had a bone marrow test done the day before and we were asking for prayer that the results would be good. What they were looking for was how much of the leukemia had been eliminated from Joseph’s bone marrow. They have a threshold of 75% reduction that experience says if there is not at least that much reduction at a early stage of treatment then the leukemia is resistant to treatment and they would invoke a more aggressive treatment protocol. In Joseph’s case they did this test a bit early as they needed to do the lumbar puncture and decided that they would take this sample as well. If he did not meet the 75% reduction threshold they would repeat the test next week when it would be “on time” but if he already had 75% reduction early it would spare him another trip to surgery next week.

The consultant came to see me and said Joseph had a 98% reduction in leukemia cells in his bone marrow. Recall that when Joseph was admitted his bone marrow as 97% leukemia cells. Now under the microscope there were very few leukemia cells left in the bone marrow and she was very pleased with that progress. However, let me say this does not mean that the leukemia is gone or cured yet. It is a rather complex picture that I will expand on below.

The other piece of good news was initial results of the genetics testing done on Joseph’s leukemia. There are many variants of leukemia, some are more easily treated and others are more resistant to treatment. In Joseph’s case his leukemia  is NOT one of the resistant types. Again this is good news as it keeps him in a category of  treatment with fewer long term side effects.

So now what? Up to this point from a medical perspective all the news has been positive. Joseph has been preserved from the deadly infection, he has not had any immediate reactions to the treatment drugs and all his tests have indicated that the leukemia is responding to treatment. Now there is one more hurtle that will have a very big impact on Joseph’s treatment. This test is called the MRD or Minimal Residual Disease. When Joseph was admitted to the hospital they took a sample of his bone marrow and sent it off to a UK lab to search for unique genetic markers of Joseph’s leukemia cells. If they are successful in finding those they will use a VERY sensitive test in a few weeks to look at his blood and bone marrow for ANY detectible presence of leukemia. This test has a threshold at 1 in 100,000 or so (waiting to hear the exact level). They know that they should not be able to see any leukemia cells in the microscope but there will always be some leukemia there. As leukemia is a disease of the blood and the blood goes everywhere in the body leukemia cells go everywhere in the body. Experience has shown that children who have more leukemia detected than the MRD threshold will generally have a reoccurrence of leukemia if they are not given a much more aggressive treatment. This treatment has more long term side effects and there can be many more complications. I am told that about 50% of children test above the threshold. No one knows why children who are responding to treatment otherwise would have this higher level of “residual disease” but they do know that if it is present this is the time to tackle it.

The goal of all this treatment is to achieve “remission” or a type of retreat of the disease. In the case of leukemia 5 years with no disease is a “cure”. In general if a child stays in remission for more then 10 years it does not come back. To achieve lasting remission the treatment strategy is get the level of leukemia as low as possible and allow healthy bone marrow to develop. Then to keep putting pressure on the remaining very low level of leukemia and not giving it a chance to gain foothold again. In boys they maintain a level of treatment for 3 years, most of that as an outpatient who lives at home with his family. During that entire time there is always a risk of infection and side effects. Then after treatment there are long term side effects of treatment to deal with. As complex as this sounds, it is a great simplification of  things the doctors are keeping track of.

Prayer Request: That the leukemia cells will be eliminated below the MRD threshold. This test will be done in about 2 to 3 weeks.