Chapter Two: Diagnosis

(I'm pretty sure there are typos in here, don't judge!)

So.... Before we left the hospital from surgery that day, the surgeon told us that it was most definitely not a lymph node he removed since it was totally different than any lymph node he'd ever seen. So whatever it was, they'd find out and let us know! Also a good sign-since lymph node problems are not good. So more waiting inside....

We waited for almost two weeks before hearing back from anyone. They found a couple of things. One-the bacteria from the mass in her leg and her spleen were the same, so that means that whatever it is, is spreading. 

Two- it WAS a lymph node, and had just been completely destroyed by this bacteria that it was completely unrecognizable. Kind of crazy since this surgeon didn't even think it was a lymph node! 

Three-they positively ID'd the bacteria, but do not know why it's spreading because it is not typical of this kind of bacteria. 

The specialist I was speaking with had a lot of vague information, but kept saying things like 'disease', 'spreading slowly', 'attacking organs', 'it's speculation' etc. I really can honestly say, I don't remember anything about our 10 minute conversation besides these words. It was terrifying. We had made follow up appointments for the weeks after surgery but they were rescheduled while they tried to figure out what was going on and needed more time. 

In the days/weeks that have followed, we were contacted almost daily by different specialists to do other tests, to ask questions, to give answers/speculations. It was kind of scary actually. No one really seemed to know anything and no one could answer our questions affirmatively. 

We finally got a follow up appointment with the specialist. We went to the hospital and she told us what it was. Mycobacterium Avium Complex. It's normally found in people that have HIV and older people with weak immune systems. They have not seen it (hardly at all) in children. (google it-you'll see-there's hardly ANY information about kids with this. it's crazy). As a result the specialist ordered another CT scan, ultrasound and 25 more tests. They wanted to make sure it wasn't spreading anywhere else in her body since her spleen (as we found) has been pretty much destroyed. They immediately sent her to get the blood work done and they took SO MUCH. Kyle said she was so strong she was pulling the nurse over. She didn't want to do it. She really is a tough little thing. They found an infected node in her neck and a few other lumps in her chest but so far nothing in her lungs or heart. THAT'S GOOD. If she develops a hoarse cough-it could potentially mean it's moving to her lungs. 

With this information we got an appointment with an immunologist (the immune system specialist) to hopefully find out if there was something wrong with Indie's immune system. As of right now, they believe that she has a gene in her genetic makeup that is messed up (Kyle has done extensive research and can give you all the technical names if you want them, but..) essentially this means that her immune system is not recognizing this bacteria and that is why it is spreading. The discovery of this gene defect is still new, and is the subject of a lot of research right now. Everyone is exposed to this bacteria. It is most commonly found in dirt, soil, sand, unfiltered water etc. but most everyone is able to resist it and when they don't, they can get sick, but it doesn't spread. At this point (since we THINK it's in her genes) we will need to have our other children tested to see if they have the same problem. 

We still have to wait two more weeks until we find out how severe her immune system deficiency is and what to do about that. It can vary greatly from...watch her carefully to have a bone marrow transplant.  That is a HUGE amount of wiggle room that leaves a lot to your imagination. We just have to avoid thinking about it. 

The only option we were given as treatment for the bacteria is a series of intense antibiotics that she will have to take for 18 months. The side effects have been seen in adults mostly, and not many kids have had to take it of course, so it is an experiment for her. The common side effects include vision loss, nausea, fevers, lots of other things but overall a definite change in her quality of life. We are supposed to see an Ophthalmologist (eye specialist) before starting her on the medicine and then the nurse said he will see her each week through the entire duration of her treatment to make sure her eyes are not affected. We can add him to the list of specialists now working on her case. They want to take the enormous amount of blood (they took from her already), a few more times to send to research hospitals all over the place to see if they can find a proper cause and cure.

We have done A TON of research ourselves and have found some pretty undesirable statistics regarding mortality rates (thankfully this is mostly with HIV patients and not kids) and some that are more hopeful, in addition to other risks to this disease as well as future issues that we could face. FYI-since it is such a new thing, there are limited resources to suggest long term effects, it's only to show what people have gone through in the last couple years. To spare you from all the details that we very undesirably found ourselves, I will just say that it is becoming a reality quickly, that this isn't something to sit on and take lightly. I thought, Bacteria....ya, just kill it. Immune system....ya, just fix it. Well..............'it's all speculative'. The little love of my life is becoming another statistic and research paper. I'll just stop there. It's hard. 

So far she has been a miracle. She has recovered from every test and surgery with amazing UMPH. Her HOARD of specialists are all in shock that she is not reacting more negatively to this. She should be a mess apparently. So far her symptoms include sleeping more, she gets tuckered easily and is grumpy when she's tired (how can you be mad when she's grumpy....it's hard to differentiate between being mean and moody, as opposed to being in discomfort), she also wakes up in the night occasionally with abdominal pain (that's normal apparently-but hard to resolve. Just gotta get through it with tummy rubs and cuddles), she also has a hoarse cough (which as mentioned above, is not a good sign) but it could be something she's picked up? We have to be careful about exposure to other kids, soil, sand etc. (If you know where we live, you'll think that's impossible). She however has an amazing amount of energy for someone that has this illness. She also still has somewhat of an appetite which is a VERY good sign. Typically people with 'MAC' lose their appetite very early on in the diagnosis and start to lose weight. So far, in that respect, so good! We need her to keep growing! 

I feel a great desire to express how strongly I feel about Indie being the one to go through this. Anyone that knows her personally, knows what a strong little thing she is. Honestly, she is SO independent, so strong willed. I totally believe (as crazy as it may sound to anyone else), that she was blessed with this temperament in order to go through this trial and help other children that might go through this in the future. They need to complete research, and she is the fighter to do it. 

These are pictures of her with her brother post doctor visits. They can't bear to be apart from each other. These are things I don't ever want to forget. 

I love them both so much!