A Bump in the Road

This post brings good news along with some less than average news. Edward has been home for almost 2 weeks and for the most part of this time he has been happy, healthy and so very content to be at home playing with his brother, sister and all of his toys and bikes which has been beautiful to see.

I’m not ashamed to admit that it is an incredible extra amount of work caring for Ed at home but it sure is well worth it. Our first night at home was a little like bringing a newnborn baby home- crazy, chaotic, disorganised but very exciting and a whole lot of fun. All 3 of them even slept like newborns with someone waking every few hours calling out for room service of some type. At around 5:00am having put Tom back to sleep, dealt with the vomit in Ed’s room, poor little Isabel was told to take a number when she called out asking for a light to be left on.

The next day I didn’t really know what had hit me. There was also a short adjustment period where we needed to settle back into the 5 of us all living under the same roof again and finding our rhythm again as a full family- something that Isabel was so very happy about. I’m pleased to report now that things have settled on that front and it’s great being all together and spending precious times.

Up until Friday Little Ed had been powering on all 4 cylinders, full of energy, ideas, strength and so happy to play in his room. His language and communication skills continuing to build and flourish. He’s been a little weaker and tired over the weekend and not as content and I’m not sure if this is related to Friday’s news or is just coincidental. It’s also hard to know if it’s linked to his ALL or his NPC although his Oncololgy Doctor today assured us that this muscle weakness and tremors are more likely due to the Chemo drugs rather than a progression of his NPC.

On Friday we received the test results from his Lumbar Puncture which were not as good as they had hoped. Whilst not many, they did manage to find some Leukemia cells under the microscope which means he is not able to progress onto the next round of Chemo.

There are a few different theories as to why this has happened and one is due to the fact that there was a delay in the starting the 2nd round of chemo and therefore there may also be a delay in the elimination of these cells. In terms of the treatment protocol he was previously classified as a Standard Risk Patient but as a result of the latest test results he has now been classified as a High Risk Patient. This means a more intensive treatment program with longer stays in hospital and higher risks of becoming extremely unwell like he did in that first round of Chemo.

If there is a bed Ed will go back into hospital tomorrow evening and stay for at least 6 days receiving intensive treatment. These 6 day stays are generally extended to about 2 weeks on average due to illness and toxicity associated with the drugs. He will have 3 rounds like this every 4 weeks so that takes us up until the end of August. There may also be delays in starting the next lot if he becomes too unwell thus deferring the whole plan.
At this stage it doesn’t look like he’ll require a Bone Marrow Transplant but if he doesn’t respond as well as hoped at the end of this 3 month period they will make a decision then as to whether this will occur.
Basically the latest test results mean a more intensive treatment plan for a longer period of time with higher risks and side effects than the previous plan. In the previous study Ed’s latest test results would not have classified him as High Risk and thus he would have not received such intensive treatment. So whilst it’s not great news it is somehow reassuring to know that they really are doing all that they can to help minimise the risk of relapse down the track based on previous research.
So far now Edward will be dismissed from Isabel’s after school care program and re-enrolling back at Club WestMed.


6 thoughts on “A Bump in the Road

  1. Ok, happy to sign up for Club Westmead again, I am quite good at it I think…so I can do really any day with a bit of notice, so let me know what you need…and happy to do a cook up, no mince…Debxx

  2. Sorry to hear about the results, but knowing what a soldier this little man is, and the wonderful supportive family he has, I am very confident he will get through this next stage. Must be so hard for you all being home for a change as a full family as you said and then having to go backwards again in hospital… People who haven’t spent a lot of time in hospital with their kids can only imagine what toll it takes on you as a parent, not to mention juggling with the other little cherubs in your life. As for his muscle weakness, that is a high chance that could be the npc side of things too, I find Timmy struggles to hold his head up for a long period of time, and have had many reports of others with the neck muscle weakness, so perhaps don’t rule out the npc side of things as well. With two illness hitting the little man it’s impossible to know really which symptom is related to what I would think. Thinking of you often Ali and always hoping the Eddy deals with each day in his soldier manner and maintains that infectious smile he wears not only on his mouth but those eyes that I fell in love with on the day I had the pleasure of meeting you both. Please don’t hesitate to remember that our Foundation is here for you also to help in anyway we can to ride the wave with you. I was thinking perhaps with your roster etc, do you have a nanny etc that we can finance for some hours of visits whilst in the hospital to give you a break, or even some home care for the rest of you guys… Please think about it and we can arrange something for you. Love to you all Mandy and the boys xxxxxooooo

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