Revisiting the Beginning – an Emotional Journey to Four Years ago

I’ve been avoiding doing this. The early days when Serenity was diagnosed were hard – some of the hardest days of my life. Diving into them and the emotions there isn’t something I’m super thrilled to do.

But, it’s important. It’s important because this is all about letting those outside ‘the circle’ know the details, the things you have to do and what you have to go through to make it through having a Cancer Kid.

It’s important because most of the world does not know about the Herculean effort made by non-profit organizations and their vast armies of volunteers to ease the burden that is thrust upon families who have an unwanted disease forced on them.

It’s important because it fully reminds me of what we went through and how incredibly …. RAW it was.

In those first 24 hours, we started out the morning taking Serenity for what we considered an annoying routine doctor visit. By the end of the day, I found myself in the hospital facing and trying to deal with the reality that my baby could be dead in the next 24 hours. Unbeknownst to me at the time, things would get worse moving forward, a lot worse, before they ever started getting better. And that’s why I don’t really want to go back to the beginning. Continue reading “Revisiting the Beginning – an Emotional Journey to Four Years ago”

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.