Waiting for some Improvement

We are now almost 2 weeks post chemo and our little soldier marches on, more down in the trenches than up the hill. It’s been a pretty tough 10 days for him with high levels of pain, increased oxygen requirements and general tiredness, lethargy, nausea, increased work of breathing and high heart rates triggering the odd Rapid Response on occasion.

It was always going to be a tough week as his blood counts dropped and it’s really just a matter of time of waiting for them come to back up. He’s pretty much had daily blood transfusions either full blood or just platelets which have assisted in his blood numbers to increase but his general sense of well being has not really followed yet.

At the end of last week the Pain Team switched his pain relief from morphine to hydra morphine which apparently is 7 times stronger than regular. This saw an amazing improvement over last weekend and we all wanted to be on what he was- a very welcome relief to see him brighter and a happier. But once his threshold kicked in and his body metabolised a little better he travelled with much more difficulty as the week went on.

We finished late on Friday afternoon with a CT and MRI of his abdomen as its fairly large and an ultrasound the previous day indicated there had been some changes in his liver and spleen from his previous ultrasound. We are waiting on the official report on Monday as to what is actually going on with his liver and spleen as they are both organs that are affected by NPC. As always with Ed it’s difficult to know whether it’s his ALL, NPC, a reaction to the Chemo, all of the above or just a combination. Furthermore he’s always having so many tests, scans and procedures which quite often show changes that its difficult to assess whether they are significant or not. Hopefully we’ll have some more answers on Monday as to what the Doctors think are going on there.

In the midst of all this we have had some positive news which is that we are a step further away from requiring a Bone Marrow Transplant at this current point in his treatment. The results from his Lumber Puncture after the 2nd round of Chemo indicated that he had responded well to the Chemo and his body was doing well at keeping the Leukemia Cells away.
We have to wait for his body to recover from this round which may be another week or two away before they are able to re-test and hopefully continue to receive further positive results.

If the news good and they are unable to find any leukemia cells under the microscopes then we will continue for another 5-7 months of weekly or bi-weekly Chemo, in principle as an outpatient at the hospital with admissions as required when they are unwell. As always it’s difficult to know how the ever surprising Ed will respond to this type of Chemo which in theory not as intense as the past 3 months.
One of the Clinical nurse practitioners likened it in general terms to the first 2 months of Chemo. I did have to politely remind her that those few months of Chemo were possibly the worst period ever in his very short, though eventful 3 years.
Here’s hoping the rest of the year are nothing like the start.

Below are a few pics taken last weekend on his initial hydramorphine high. Looking forward to hopefully seeing some of those gorgeous smiles this week!!!




3 thoughts on “Waiting for some Improvement

  1. Thanks, Ali, for your post. Always tough to read, but then you are living everything and we are just caring from afar and all we can do is just hope, wish, and pray for Edward and you all. There is so much in front of you. Edward is always surprising and such a brave little man. We are with you and hope the rest of the year is an improvement on the past. Our love and constant thoughts.

  2. Hi Ali, thanks for the update. It’s been quite a roller coaster. I hope the results are okay today and there are more highs than lows this week. Love to you all, Trevor & Carmen

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