Tuesday, March 31, 2015

Immune Deficiency Foundation Conference

A few weeks ago I applied for a partial scholarship for the Immune Deficiency Foundation's National Conference in New Orleans. Today I found out that we were awarded the scholarship! It will cover the hotel stay. When I applied I didn't really think about it, I just wanted to make sure that if we wanted to go that we had applied. It would be an amazing opportunity to meet other families, meet doctors, and learn more about Fiona. I'm a little anxious about traveling, and about how to pay for the travel and registration. I'm really hoping we can make it happen. I think we could all use a break after our winter isolation.

In a little over a week we go to Cincinnati. I'm looking forward to hearing what Fiona's doctor is thinking about. Waiting has given me a little too much time to think about it. When Fiona was first diagnosed we went from thinking she just had a typical virus, then hypogammaglobulinemia, and then an unknown immune deficiency. Every step has been a little worse news. I hope that isn't the case this time.

Some of us have had a cold/allergy/sinus infection, but Fiona hasn't had more than a runny nose. I'm so thankful for her treatments. Her last two treatments went really well. She didn't cry when I stuck her, and she was so brave.

This week is spring break, and the weather is nice, so Christian and the kids went to the park last night. Fiona was really excited to swing. She stopped two boys at the park to tell them about her curls, which is what she calls her ponytails. She loves to talk about her hair, it's adorable. She's also a blossoming singer/songwriter. This week's theme is Old MacDonald. Yesterday she was singing "with a poop poop here, and a poop poop there", and today she sang about hating her older sister, because Katherine wouldn't let her take a bath. She's exploring art, and likes to talk about her masterpieces.

Friday, March 20, 2015


Fiona is sick again, fortunately it's so mild we haven't checked to see what it is. We drew her labs just before she had symptoms, so they show what her body does as soon as it encounters a virus. The good news is that her CD3 (regulator t-cells) and CD8 (killer t-cells) responded really well. Her CD4 (helper t-cells) went up slightly, but are still really low. The problem is that helper t-cells tell killer t-cells where to fight. I'm still waiting for more labs to come back.

Fiona has started announcing to anyone listening that she is sick. Sometimes her brain is hot, sometimes it's cold. She likes to have her temperature checked. She needs lots of bandaids for her bruises and scratches. Today she told me that she needs to play "in the warm sunshine" as she ran out the front door with no coat or shoes. It's 43 degrees and mostly cloudy, so she was disappointed.

Friday, March 13, 2015


Yesterday I found our that Fiona's doctor is thinking about a different diagnosis than we have discussed previously. I won't find out what it is until April 8th. That's a long time to wait. As a mom who likes to learn as much as she can, this is going to be an exercise in patience. They are sending me a kit for the lab to draw blood for us to send in to get tested. It takes two weeks for some of the test results to come back. We're also waiting for the results of her genetic tests to come back. I'm not good at waiting.

Thursday, March 12, 2015


Fiona had her pentamidine infusion last week. It was okay. She had to be stuck 5 times to get her IV started, and 4 of her sticks they used an ultrasound to see the vein. Having to be stuck that many times is pretty traumatic for her. This will be a monthly infusion.

I'm starting to think she may need a port. For anyone who doesn't know, a port is a small medical device that would be implanted under her skin. It connects to a vein with a catheter. Her veins have never been great, but we've avoided a port because she's only getting blood drawn. Getting a port would allow them easy access to a vein when they need it. The downside to a port is that it can get infected. With her immune system that would be bad. She's also growing, so her port would have to be replaced a few times as she grows.

Her last labs came back and they look okay. They aren't normal, but they're pretty normal for her. We're waiting to hear what our doctor in Cincinnati thinks about her numbers, and about a port.

She's still healthy, which is nice because she had a pretty long stretch of infections starting last spring. We're starting to think about taking her back to church in April. She escaped the house for a few minutes yesterday and loved it. She was climbing over a snowbank, throwing snow balls, and taking our neighbor's invisible dog fence lawn flags for a "road rally" (thanks to the Mickey's Road Rally cartoon). These are the days that the mommy guilt really kicks in. I'm always trying to weigh the risks. I hate that she doesn't get to have normal kid experiences.

Lately I've been reading about Idiopathic CD4 Lymphocytopenia (ICL). That's just a long way of saying that they don't know why she doesn't have enough CD4 t-cells. CD4 cells are also called helper t-cells, and they are the t-cells that most people know about because of HIV and AIDS. Fiona has a significant helper t-cell deficiency, but she doesn't have HIV or AIDS. Her immune deficiency is called a primary immune deficiency because it's genetic, not acquired, like HIV or AIDS. Because her other t-cell lines are low, I'm not sure that ICL fits her well.