Quite a bit going on since my last blog entry. We are steadily working on getting our house in order. I love this house!! It's not huge, but is so roomy and full of personality. We could be happy here for a long time.
We had family over here for Thanksgiving. Our first time having company over other than to just say hello since we've moved in. It was nice - but a reminder that I still haven't figured out where everything should be for maximum efficiency just yet. I also think I'm missing a couple of kitchen boxes - because I couldn't find a few things. Britt made an amazing turkey (that I couldn't eat) and we had the other normal turkey day staples. After dinner a couple of Hannah's friends hung out and played a board game with us. It was tons of fun. I think Elijah really enjoyed himself.
Elijah will turn 10 years old in just a few days. It's so hard to believe. For more than 5 years we have been living day to day, not knowing for sure how long he would be with us, but praying that it would be until he is old an gray. Elijah turning 10 is a huge deal. We have been truly blessed.
Right after Elijah's birthday, Hannah will be 18!! How the heck did THAT sneak up on me? 18 is basically an adult - ugh. I'm old. I'm so proud of her. She will be graduating from high school in May and then it's off to college.
The next few weeks are going to feel like a whirlwind of activity. Birthdays, Holiday Parties, work, getting settled in the house and then Christmas. The day after Christmas we fly to Philadelphia for testing and to meet with Dr. Maris.
Elijah just finished his 18th round of this drug. He's been on the same medication for over a year. That's amazing. In the wee hours of the morning today, he had some pain. Woke up crying with pain in one of his legs. I can't adequately describe the feeling in the pit of my stomach when he has pain like this. It's terrifying. Even though we know that he ALWAYS has some sort of pain issues after he finishes a cycle of this drug, the thought of disease progression is always there. Thankfully pain meds got everything under control and today he is just fine.
Britt and I made a list of our wishes and goals for 2010. I don't think I attained a single one. I need to find my list and work on my list for 2011. The dynamics of my life, friendships, and priorities changed over the past year. My list for 2011 may be completely different than it was last year. I know first and foremost will be to make my health a priority.. spiritual, physical, marital, and mental health.
I am excited for Christmas, but this month is so busy. I really am ready for December to be over before it's even started.
So much...
It's wrong to be tired
I was able to see a neuroblastoma mom friend today at the hospital in Philadelphia. I haven't seen her since last January. Even though we've only met once in person, I feel as though we are friends. It's crazy how cancer does that. We talked a bit about "survivor guilt". As a parent of a cancer patient, we do experience it, crazy as it may sound. Seriously, who should ever feel guilty that their child is alive? No one. I don't so much think it's guilt over my child being alive as opposed to some of my friends whose children we have mourned. You know, sometimes I get really tired and irritated! That's what I feel guilty about. How can I complain about flying all day and being tired when I'm flying to someplace that's keeping my son with me? I know my friend who lost her daughter a few years ago would trade places with me in a heartbeat and gladly go through some long days just to be with her daughter again. How can I bitch about being tired? We come to the hospital every week for labs. I have to give Elijah shots for several days in a row each month. We fly to Philadelphia every 6 weeks. I miss tons of work. Woe.Is.Me. In this world of kids with cancer, there are three places you can be: Done with treatment and living a "normal" life (life is NEVER normal after a cancer diagnosis), still in treatment and in the fight, or you've lost your child and are learning to live again, as impossible as that sounds. Even though I whine from time to time and I complain about being tired, I am so thankful to still be in this fight. I will continue to do it forever, if that's what it takes. I am 100% positive that Britt will say the same thing. Our lives are not what we pictured - but it is ours and we embrace it. Normal is just different for us, that's all. REALLY different.