Lizzie's Journey

The waiting game is over,,,,, or so we thought

I never know what to expect with Boo. If anything, I’ve learned to expect the unexpected, but sometimes you’re still blind-sided. It just happens, and today was no exception. We were anticipating excellent test results from Lizzie’s most recent blood work. She’s been infection free for a while, and the initial testing was optimistic. Both of her doctors seemed pretty confident that the results would be good, and we had immunology just about crossed off of our list when… we got the curve ball.

Lizzie’s immunoglobulin numbers look good, which is great. Her T cells and B cells are both making cells and responding to some infections, but apparently her T cells are not functioning as well as we had hoped. Once again Lizzie is odd man out. Her T cells are not making any response to Candida, which is highly unusual without the presence of certain conditions (which she doesn’t have). This would explain the thrush and yeast infections, but we still aren’t sure why it would be happening outside of those conditions. Chalk it up to another 2% that Lizzie is a proud member of! Lol! So our first step is to have some more testing done next week to see if we can find some more definitive answers. The last test was done with cells in a petri dish, so this time, they will test her skin directly, and she will receive a “patch” that she has to wear for 3 days. This will test how the cells in her body actually respond to the candida. She will also have yet another blood panel to retest her latest results. After that we will move on to the vaccination titers which I am still not happy about, but I am now at least comfortable doing because I know that they are necessary.

So how do I feel about it all? Not really sure yet. On one hand, I’m excited to have a wonderful doctor that listens, explains it all and is willing to look for answers. I can’t say enough about how important that is. I’ve always felt like all of Lizzie’s issues are connected, and I think this is one more step in connecting them all. I truly feel like one day we will find the answer. On the other hand, I’m so frustrated. I’m really tired of taking my baby to be a pin cushion. I’m tired of doctors not having answers. I’ve talked to dozens of doctors, done literally hundreds of hours of research, and I know less now than I did when she was 6 weeks old. I’m tired of my baby being “special”. I’d give anything for her to be boring, dull even….

And then I’m reminded of how blessed I am. I have 2 amazing children, both of whom are happy and very healthy considering. No matter how frustrated I am, that’s a pretty big wake up call. It’s like a dear friend of mine said tonight “You’re entitled to the pity party every now and then, you even deserve it. Just don’t ever let it cloud your blessings”. What encouraging words. I do get tired of being the rock, I won’t lie about that. Sometimes it helps just to say “this sucks”. Cause guess what? It does. It’s not fun to see your little one go through so much. But then you pick yourself up, say a big fat thank you that it’s not worse, and move on. If it ends up being a true immune deficiency, Lizzie will be put on another medication to control it. Not our favorite option, but yeah we’re pretty thankful to have the option. Modern medicine is both amazing and frustrating. My goal? To find a balance between the two. Yeah, God’s definitely determined to teach me patience.

Labels: immunity testing, immunology, patienced, t cells, Update