Status Quo

Dear All,

It’s been quite a while since we’ve posted a new blog entry. Part of the reason for that is that we have spent our energies more on the facebook page.  However, there are those of you who are not facebook friendly and so I thought we should post a follow up.

As you may know, there have been some complications with Maya. There are three issues which we are currently dealing with:

Brancholitis Obliteran is the result of all the chemo we have received. There is some thought that this disease was caused by Melphalan, which is one of the chemo used to kill off Maya’s bone marrow. We have had Melphalan before, but for whatever the reason, this time around – perhaps due to the high dose – it may have caused the lung damage. In order to treat this disease, we have been getting the high dose “pulse” steroids for three rounds. The good news is, the downward trend seem to have stopped and nominal amount of lung function has been restored. At this point, we no longer worry about losing her lungs. It is however unclear whether fibrosis has set it. If so, approx 50% lung function is what Maya will have to live with. The doctors at sick kids feel that an additional three rounds of high dose pulse therapy may be beneficial. Without doing a lung biopsy, we won’t know if we have significant fibrosis. In other words, we won’t know if the additional three rounds will be beneficial. In other words, the next three pulse doses will be diagnostic in whether there is fibrosis.

Now, all things in medicine is a double edged sword. While giving her the pulse therapy may be beneficial, it is not all together without risks. Specifically for Maya, we are also dealing with Osteoporosis. Many of Maya’s back bones have compression fractures, some caused by cancer itself and others likely due to all the therapy she has received. Maya may have had a very slight hairline fracture in her right ankle due to osteoporosis. So, Maya is also taking calcium suppliments. We will likely see a naturopath to see if we can provide additional bone support for her.

And additionally, we have also tested positive to a rare bacterial infection; Mycobaterium Avium. The bacteria is not that uncommon. However, being infected in the lungs is rare because typically the body fights off the potential infection. Of course, with compromised immune system, somehow, Maya picked it up. This means Maya will be on an antibacterial for about a year. The cons: we may lose color vision and we have also noticed a nominal additional hearing loss.

These three issues are “under control”. Hmmm…. not quite under control, but it is not out of control. What we feared the most was the possibility of losing Maya’s lungs. What would we do if that was to happen?

We have now two additional teams to deal with. The first is the chest team, who are following Maya’s lung functions carefully. We are also being followed by the Bone clinic at sick kids.

Maya continues to do well. She is the most well adjusted child that I know. She is happy and the worst of her complaints is that she does not like to miss school. Maya will not start school until January if all goes well. But she keeps busy. Firstly, she loves loves loves her puppy Tofu. Out of the blue, Maya wanted to play the violin. So, we have a violin teacher coming for lessons. We also have ear plugs for the family, at Maya’s insistence.

Other then that, things here at the Kim Family has been rather “normal”. We are enjoying our time with the family. It’s been refreshing to be caught up on the typical issues of a life in the city.

So thank you all for keeping an eye out on us. We appreciate your support and your kindness.

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