Tuesday, February 10, 2009

FROM BAD TO WORSE

I know it has been awhile since I blogged, but truth be told, my heart just hasn’t been in it lately. The past several weeks have been trying ones for me and my family. With everything going on in our lives, my motivation has been seriously lacking.

In early January, Maggie was diagnosed with juvenile epilepsy. In mid-December, Chris and I became aware of these “spells” she was having in which she would be in the middle of having a conversation or doing something, and all of a sudden, she would freeze and just stare off into space for about 10 -15 seconds. When it was over, Maggie wouldn’t even know she had done it. In fact, most of the time it was so subtle, that we chalked it up to her just having a “spacey kid” moment. However, after the spells started to become more frequent, something clicked with me and I realized she was having petit mal seizures - - except most doctors today call them “absence” seizures - - pronounced with the end of the word rhyming with “sconce” because everything sounds better when you say it with a French accent.

To make a long story short, after an EEG confirmed the absence seizures, Maggie met with a neurologist who put her on anti-seizure medication. The episodes have lessened but are not gone entirely. She is also having some difficulty with the medicine because it makes her sick to her stomach, as well as makes her sleepy. We are meeting with a different neurologist tomorrow, so hopefully things will improve more in the next few weeks.

The good news is that these type of seizures only occur in children. In all likelihood, she will outgrow them as she gets older. However, there is a possibility that they could develop into more serious, severe seizures as she gets older (which are now called “tonic clonic” instead of “grand mal” because apparently somebody decided that rhyming words make epilepsy much, much cooler.)

I thought that the year started off on a bad note, and that things would get better from here. However, just as we felt we were starting to get a handle on all this, our family experienced another major shock a few weeks back. My Aunt Linda, my mom’s sister, was diagnosed with brain cancer. She had been having some health issues over the past several months for which she had not been able to find any answers - - then a seizure that left her left side paralyzed sent her to the hospital in an ambulance, and a CT scan revealed the problem.

After an operation to remove the tumor, the doctor seemed pretty optimistic about the whole thing, and our family breathed a sigh of relief --- even with her left side still paralyzed, she had made it through the surgery, and the doctors seemed pretty positive that strong radiation and chemo pills would take care of the rest. We rejoiced, thinking that physical therapy could assist with the paralysis, and feeling so grateful that the cancer was at least treatable. However, a few days later, the more detailed pathology came back, and it showed Glioblastoma - - a very rapidly progressive and lethal form of brain cancer, already in the last stage. We could hardly believe it when we were told that in all likelihood, she would have 6 – 12 months to live. The elation we had felt just days earlier suddenly turned to grief and disbelief.

One of the other factors that makes Aunt Linda’s situation even sadder is that my cousin Teresa (her daughter) is pregnant and due in two months with their first grandchild. Teresa is one of those pregnant women who just GLOW - - she has been so happy and excited about this baby girl she is carrying. What should be the happiest time in her life has now become one of the saddest because she is racked with grief about the thought of losing her mom.

I could go on, but I think you get the idea. There are funny things that the kids do or say, or something comical that will catch my attention, and I think, “I should write about that….” but I just can’t bring myself to do it. I will return to blogging soon. Right now, writing about the day to day is just too hard with such a heavy heart.

4 comments:

Tonya said...

My heart just hurts for all of you. Each day is a gift and I know your family is strong and will find the courage to deal with this.

lartdejournalier said...

I'm so sorry you're having to deal with all of this, dear friend. :cry: :hugs:

Julianne said...

Geez. So sorry Becky. I had no idea about Maggie's seizures. Keep us posted on the doctor/med changes.

SO sorry about your Aunt as well.

Ms. Hill said...

I'm praying for you all, Becky!