Chemo Today

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.

 

7 thoughts on “Chemo Today

  1. Hi Ed & Kate. While Joseph has still much to endure the news so far is very encouraging. We continue to call upon our Lord for you all. We also pray that you and the children are getting your portion of sleep. We leave all with our heavenly Father, with Him all things are possible.

  2. When you wrote “Before dinner Joseph had a very deep and restful nap” it stirred memories of the lovely words of Psalm 4:8 “I will both lay me down in peace and sleep: for thou Lord, only, makest me dwell in safety”. May Joseph know the Lord’s safety as he faces the varying treatments scheduled for him. Our love in Christ to you and all your family, C & M.

    1. Dear Ed and Kate,
      You and your family are continually in our prayers. Earlier this week my morning Bible reading was in 1 Samuel 16. Have since been praying for your little Joseph-David to be gloriously victorious over this cancer-Goliath. “You come to me with a sword, a spear and a javelin. But I come to you in the Name of the LORD of hosts, the God of the armies of Israel.” Praying today with so many others to this same great LORD of hosts, Who has gone to such extremes to make Himself our Father and us His children.
      We love you dearly!
      Katy

  3. I TRUST THIS LITTLE BOY WILL COME THROUGH ,, AS THE LORD ALONE BROUGHT ME SO ME HE DO SO AGAIN ..FOR HIS NAME SAKE…

  4. Praise God for His wonderful mercies. So happy to hear that he was up playing again. God is so good, we will continue to pray for Joseph. How is Kate & the other boys doing thru all of this.

  5. Dear Ed, Kate, and boys,

    We continue to pray for each of you and especially for little Joseph. We’re also praying for all who are surrounding your family and helping you with the day to day activities which must be done and for those who are administering Joseph’s treatments and such. May God continue to grant you peace and wisdom for the days ahead and as you continue to trust in Him. Give Kate and the boys a hug from the Lees…we love you all so much!

    Blessings,

    Sherry for the family

  6. Ed & Kate,
    Joseph and all of you are in our prayers and in the prayers of thousands at Briarwood. Our God is great and will care for you all.
    Charles Woodall

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