Author: Adria

September update

A few weeks ago Serenity started behaving really oddly. She would scream for hours every day about various things, often because she was hungry and didn’t know what she wanted to eat. She had trouble hearing us, and would often throw things and hit people. It seemed like nothing we did would serve to calm her and it was very frustrating after many days of it.

At one point I spent some time researching the symptoms of a brain tumor, because her behavior was so unusual. We wondered if it was a delayed effect of the chemo, but that didn’t make sense since she has been off chemo since the end of July. Finally it occurred to us that she might have an ear infection and so Phil took her in. She does have a double ear infection, poor girl.

Since we have had her on the antibiotics things have calmed down a lot. She is more like her normal sweet self. She complains of leg pain sometimes – almost always the same leg – which makes me worry about AVN. The clinic has yet to do a follow up EKG which I am anxious for as well. But overall, things are good and we are enjoying the days with our sweet children.

Disappointed

I’ve been feeling frustrated about things I cannot control. Sweet Brinley had a lemonade stand several weeks ago that raised over $6,000 for childhood cancer research. This was so amazing and touching to me. The next morning I woke up and saw all over the news that our current governor had received $700,000 in campaign contributions that same day. I know the two are totally unrelated, but it bothered me A LOT that there is such a huge discrepancy between where we as a society spend our money and where we SHOULD be spending it.

Yesterday I went to sign up for the National Bone Marrow Registry. A local boy I do not know had decided to host this for his Eagle Scout project, and someone had left a flyer on my door. The test was simple: 4 cotton swabs were used inside my cheek to collect cells. The family of this boy was willing to cover the cost of the test ($100). When I arrived at the location I was the only donor in the building. I wanted to run outside and yell at the world, “WHY isn’t everyone in here donating?”

I understand it is a commitment that maybe not everyone is willing to make. By signing up, I was agreeing to donate circulating blood cells or bone marrow for anyone who is a match, until I turn 61. But these donations save lives! They save the lives of people who will DIE without a match. They save the lives of little innocent children with leukemia. (Serenity did not need a bone marrow transplant, but many children do. If she were to relapse someday she very well might.) The donation is USUALLY done via blood nowadays, not even bone marrow. I was just shocked and saddened that this event did not get a better response. Maybe people really don’t care.

2 days before Serenity’s diagnosis

I stumbled across an email I wrote to Phil’s cousin. It’s dated two days before we got Serenity’s diagnosis.

Every week or two Serenity gets a raging fever. 104 w/o medication but it usually comes down with Motrin. Last time I took her in – I rarely do that – she had a bad double ear infection. I wouldn’t normally do the antibiotics so readily but she also had an upper respiratory infection and where her teeth were waiting to be pulled was all abcessed. So we did the abx and she felt great and then we both got yeast and it was awful. She’s been through a lot lately. Her hand was slammed in the door a couple of weeks ago, it’s still blue and black and a bit puffy. She can move her fingers but I think she’ll lose the nail, it looks so bad. She’s got a hacking cough and (clear) runny nose. All of this I think is ok but suddenly the familiar fever, and it’s been nagging at me that she bruises SO easily. I mean Phil holds her legs to change her diaper and she looks like she has been abused. Horrible, deep dark bruises all over her body, ever time she falls down. And I wonder whether something is wrong with her.

We have a great ped, but no insurance and right now no money so I am not taking her in. She actually seems a little better today than yesterday. Yesterday she alternated sleeping and screaming at the top of her lungs all day and evening, even with the Motrin.

Any ideas?

It was weird to read, because I don’t remember her being that sick. I do remember thinking she was sicker than my other kids had been.

I am so grateful for modern medicine and the miracles that have made it possible for Serenity to be alive and well today.