Lliam’s Chronicles

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).

In February Lliam was involved in a bicycle accident. I’ll see if I can post some more photos on this site; he was a sight for sore eyes! He ended up with a swollen eye and lip, plenty of superficial face wounds, and a broken scaphoid bone in his hand. We now have enough experience of the Australian Medical System to tell you it works extremely well. Most of the injuries (except for the broken bone of course) healed within a week, giving us a good indication of Lliam’s health.

Unfortunately, as result of the broken scaphoid bone, Lliam’s arm and hand was put in a cast that will only come off in early April. He was (and still is) very annoyed with this, as it meant he could not participate in the soccer try-outs this year, he had to relinquish his spot in the school cricket team for this season, cancel his guitar lessons and tennis matches, and he missed his Year 6 school camp. He is still continuing with his tennis lessons though, cast and all! Hopefully this forced time out will teach him the hard way to be more careful with his bike!

The broken scaphoid bone could not be confirmed by doing the normal X-rays, and had to be confirmed by doing a bone scan. Bone fractures are identified by injecting a radio-active dye into a vein, from where the dye is then absorbed over a period of an hour and a half into the bones. Bone fractures, or areas where the bone is very active, can be seen clearly using this process.  I was so fascinated with the process that I did not insist on calling Juliana before they injected the dye. Only later did I realize it was radio-active dye, and anything radio-active may affect the bone marrow. I felt sick with worry, until we spoke to Juliana later. It appears bone scans are quite safe to do on recovering aplastic anemia patients, and the dye only remains active for a short period. So, if you had the bone scan done, don’t worry about it as much as I did. Speak to your doctor just in case, as not all cases are the same, but I kept on worrying about this until we got the results of the blood tests yesterday.

Juliana (his hematologist) introduced Lliam to a visiting doctor as a recovering Aplastic Anemia patient, which was so good to hear. The visiting doctor was surprised that Lliam was doing so well following only one set of treatments. One of our big concerns when Lliam was initially diagnosed with Aplastic Anemia was whether we were referred to the best hospital available for such a serious and rare disease. It is very difficult to decide who to trust when your child’s life depends on it. Our research indicated that the hospital we were referred to had a good reputation, and a strong hematology department. It is also a teaching hospital affiliated with a university (the University of Sydney in this case), an attribute which counts strongly in its favor when dealing with rare diseases such as Aplastic Anemia. For any of you living close to Sydney, Australia, we are extremely happy with the care and treatment Lliam received from the Westmead Children’s hospital and the hematology team there.

We were informed yesterday that Lliam’s recovery is now so far progressed that he will probably make a full recovery without the need for further treatment, and that it is highly unlikely for the recovery process to be reversed at this late stage. This means that he should be okay even if he catches one of the viruses we previously had to avoid like the plague; for example the flu, chicken pox, slap cheeks and whooping cough. In other words, we are almost there! A week ago we also celebrated the major milestone of one year of transfusion independent living.

The other good news? We now only have to see Juliana every four months for a check-up, instead of every three. It took a long time to get to this stage of recovery, and I know some of our readers are only starting this journey now. Yesterday was 488 days since Lliam was diagnosed with a severe to very severe (to quote one of the doctors) case of Aplastic Anemia. We share our experiences and feelings in the hope that it may benefit other families facing similar challenges.

Thanks to all of you for your ongoing support and prayers out there. We really appreciate it, and have much to be grateful for.