Lliam’s Chronicles

You will notice, again, that I took my sweet time to update this site to reflect the last blood tests that was taken in April 2010. The first reason is we have just been incredibly busy. The second reason, to be honest, is that the game has changed a little bit for us. Before we were told about Lliam’s PNH clone, we believed we were on the home stretch adding the last few updates on our way to a full recovery from Aplastic Anemia. Now we know we are in for a longer battle, during the course of which (at least for now) there is not much else to do but wait and see. We are, of course, still hopeful for a full recovery without the need for additional treatments. Lliam continues to do very well and you won’t believe he is sick if you if you saw him, for which we are very grateful. Many others are not so lucky, and we’ll get back to that shortly.

Just to get the results of the last blood tests in April 2010 out of the way then. The results of the standard blood tests we’ve been monitoring since we started this journey came back just great. His hemoglobin count was 130, White Blood Cell count 4.6, Neutrophils 2.7 and Platelets 136! All of the other indicators including HbF and MCV are normal or moving in the right direction. This is a far cry from where we started. It is really just the platelets that are not in the normal range yet, but we are getting close. All of these blood cells, aside from the fact that they are more fragile than normal cells, are doing the work they should, so Lliam is full of energy and well enough to continue participating in all the sports activities he wants.
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The human body is a strange and wonderfully complex thing. It is an intricately balanced organism and even the slightest change in the make-up of something as small as a stem cell can result in major complications and big changes in how the body reacts to itself and the environment it finds itself in. While this is sometimes frightening, it is also comforting. There are so many processes and systems we do not fully understand yet and so much we can still learn, that there is always hope.

You are probably guessing by now that we are facing a new challenge. But then, that is part and parcel of the Aplastic Anemia journey. It keeps you humble. Just to explain our absence and lack of posts for the past six months or so – Lliam has been doing great. His blood counts were slowly increasing, and aside from a few other issues we will get into later, we believed we were on our way to being rid of concerns with regards to Aplastic Anemia.
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You know you’re nearing the end of a battle when you are running out of things to say, so I will keep this update very brief.

The results of Lliam’s blood tests yesterday confirmed that Lliam is in the final recovery phase, and that it is very likely that he will make a full recovery without the need for further treatment. Most children prescribed the same treatment regime for Aplastic Anemia only really respond well after two sets; so we are extremely fortunate that Lliam is doing so so well following one.

Lliam’s hemoglobin count is up 4 points to 124, which is firmly in the normal range. The white blood cell count came back at 4.2 and neutrophils at 1.6. Again, both are regarded to be in the normal range and nothing to worry about. Lliam’s platelets dropped slightly from 91 to 90, so effectively remained stable. Whilst his platelets are still below the lower normal range of 150 for his age we are not concerned. We know that platelets are the last to recover and that it may take some time to do so. As expected the MCV and the hemoglobin F (Hb F) counts are still showing downward trends. At the time of diagnosis Lliam’s Hb F was 4.2%. This reduced to 1.9% in March 2009 and we expect it to be even lower when the results of the latest test becomes available in about a week’s time. An Hb F score of less than 1% is regarded as normal.
Click on the thumbnail to see the latest Blood Work Graph (14 Jul ’09). Read the rest of this entry »

Lliam had his quarterly blood test again yesterday. We are more than happy with the results…again! His hemoglobin count is 121, which is low but within the normal range! His white blood cell count is 4.6 and neutrophils 1.8. These counts are also regarded as more or less within normal range. The platelets (always last to recover) are showing a wonderful upwards trend. It increased from 72 in December to 91 yesterday! The MCV count is going down nicely, as it should. Juliana said Lliam can now participate in any sport he wants – even gymnastics.

Click on the thumbnail to see the latest Blood Work Graph (17 Mar ’09). Read the rest of this entry »

I cannot believe it has been more than a year since Lliam was diagnosed with Aplastic Anemia. It’s been a long year, but all in all a good year. As you may know we have been “promoted” to seeing the specialists only once every three months at this stage, and today was D-day again. Lliam actually said that he was nervous on his way to the hospital…he regards his blood count results almost as a report card. Today, he had a good one! His hemoglobin is up to 115, platelets 72 and neutrophil count 1.3. In short, we have broken through the plateau and in the doctor’s words “Everything is moving in the right direction.” We are still a long way off full recovery – his white and red blood counts have just reached the very bottom ranges of normal and his platelets are not quite halfway, but at least we are getting there even though it is a slow process.

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