Thoughts are all messed up today

Here’s an email I sent out earlier this afternoon. I am making this post private, just for me, as I’m still trying to adjust and comprehend what all this means. . .

As expected, the test results from mom’s medical exams came back today. There’s a whole lot of a good news/bad news situation.

Per her email, the good news is that she is not in the hospital; the CT scan shows that she does, in fact, have a brain; and that “get this – I’d lost 10 pounds! I sure don’t know where!” (every little thing is worth celebrating, right?).

The bad news is that the treatment didn’t work. It appears to have had no effect on the mass behind her left eye which is now 1 1/2″ across. She said that it looks like it completely fills up the orbit, but so far the doctor feels that it isn’t affecting her optic nerve and that somehow the nerve might be protected (good news?). We’re not quite sure how. She goes back to the ocular cavity specialist in two weeks so we’ll see what she has to say at that time.

Good news: white blood cell count (today) is better than it’s been in a long while, which means she has no infection and does not have MRSA. Or this could simply be . . .

. . . Bad news: With her white blood count so low she still cannot fight the infection that she has had for months. Not sure if it is cellulitis or not as the doctor has conflicting views on it. Bottom line is that the infected area is a big red ball between the nephrostomies, in the center of her back, the size of her fist, and extremely painful. She hasn’t gotten the cultures back which will tell exactly what kind of infection it is and the meds to take. Obviously, the meds she has been on for the last three months are not right as they have not worked. The doctor got her an appointment with the nephrologist next week to take a look at it (much faster than if she called herself), and hopefully he can have some sort of insight. She gets the results of her creatinine tests back tomorrow, hopefully, so she will find out then if a hospital stay is mandatory.

Good news: (?) About two weeks ago, in one of the random searches online for additional information, I found a website for a nonprofit group that focuses on Histiocytosis and Histiocytosis related diseases (mom has three of the eight listed diseases, all considered very rare by NORD–the National Organization for Rare Disorders). They are starting a registry for ECD, and have a private blog that serves as an online support group for those afflicted with any of the disorders. I shared this info with mom, so she could join, and mom found the name of a doctor at Johns Hopkins. She has applied there before and was denied because the disease was too rare, but now that this guy is on staff her doctor is going to try to get her in to see him. Reading the site, there are some people that have tried chemo just as she did four years ago but none of them have seen any improvement. Hopefully this guy at John Hopkins will be able to give her doc some suggestions. She will find out next week if she should continue the interferon treatments anyway, as it is the only thing that has shown any promise. Even though it hasn’t worked for her, it might slow the progression of the disease at least. The Anderson Clinic in Houston has reports that show it is the only known treatment for the disorder, rather than treating the symptoms, so if she is allowed to continue with it there might be some sort of positive feedback even if it doesn’t target the mass behind her eye. She did find that there are four more people that have it currently, bringing the total to eight living, including two more women–they thought that she was the only female.

At the risk of sounding selfish, I was kind of hit hard by all of this news this afternoon. I cannot even imagine how mom felt. We had prayed, wished, hoped, and dreamed that this was the answer we had been searching for over the last eight years and it feels like a big red X just got stamped over it all. Lord knows my mother has found immense strength that I never saw growing up, as she has done more and tolerated more in the last few years than anyone could ever imagine and still gets out of bed in the morning. Granted, lately it’s with massive doses of painkillers so that she can get out of bed, but hey–whatever it takes to get going. I don’t really know what to say to you guys, other than the support is most certainly felt, appreciated, and sometimes what keeps her/Tom/Drew/me going when dealing with this. We have prayed for a treatment, a cure, pain relief, strength, tolerance, understanding, grace, and patience–yet sometimes like today you get the feeling that you’re still not getting it quite right as you haven’t learned the lesson that God is intending for you to learn. So I guess I need to pray for more understanding.

Well, that’s the diatribe for today, thanks to all for the support. Janice, I bcc’d the names you had from bells/small group on this, so you don’t need to forward.


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