Today is the dreaded Clinic day. Don't know why I say that because we will have Tuesday Clinic's for the next 99 weeks. We are at least down to double digits now. We have been doing this for 40 weeks so far. Amazing...and now they (doctors and other parent's) tell us that it WILL start to get a bit easier. We have no more major chemo weeks. We have spinal taps every other month in Memphis. And her chemo regiment consists of methotrexate every 4 weeks and then a pulse of dexamethasone and vincristine. And of course nightly chemo. That is manageable. We still have to worry about fevers and infections, as her immune system isn't going to be stellar, but way better than what we have gone through.
So as you can see, I started this Tuesday and just didn't have time to finish it until now. Sometimes being home with Lucy 24/7 is more than a full time job. We have been doing school at least 3 days a week, and I must say I am impressed with her knowledge. At times, I was like "how do you know that?" LOL I think being the younger sibling is a big help. Jack and her play a lot and I hear him teaching her things. She is so ready to go to school. She keeps asking if she can go back to her sitters, Lisa's. I wish she could :( I know she is starving for some social interaction from anybody. She is growing up in a world of adults. And she loves clinic days because she gets to interact with other kids. Sad that she doesn't mind getting chemo because she gets socialization.
Lucy has had a pretty good week, wish I could say the same. Sometimes I go along and life is fine. I'm adjusting to the new normal, and then out of nowhere BAM! I get hit with reality and play back in my mind the past 8 months. I don't know what it is about a tragedy or when a family member gets sick, but it seems to strain relationships. And we aren't the only one experiencing this. We talk to other families in clinic or at the RMH and they too have experienced family dysfunction (more than normal of course) and its funny when you are in this situation as to who comes to help you or shows your support. It's not always the people you would expect. You would expect it to be your family, that is not the case, at least not in our situation, and surprisingly in a lot of cases as I have conversations with other families with a child with cancer. Now don't get me wrong we have a few family members who are religious about checking in and calling. But some don't at all. And very few have actually called and asked if they can come over and see Lucy. Same with some of my close friends, who I haven't talked to in months, BTW. It really bothers me. Is it that people can't handle it? They don't know what to say? Or is it that we are forgotten. I know that life goes on, and I am truly happy for that, but we are still living in this world and will be for 2 more years. And people may get sick of hearing about it, but tough. If you lived it every single day, what else would you talk about? What do most people talk about? they talk about what goes on in their life. Work, school, kids...our conversation happens to be cancer. And while its not comfortable or fun, its reality. And just shows you how deep we are in this for a very long time. I am disappointed with some of our friends and family. and amazed. and admittedly, my feelings are hurt. I guess its because as humans we are intrinsically worried about ourselves first. I think that is why I was having a hard time sleeping the past week. It all stemmed from Lucy's benefit at the Castle. That was a big deal. She was present, and was excited to see people, people she knew. And she got her own "day", which is really cool. And she had this awesome man fly all the way from California for her. And we didn't have half the friends and family show up that we expected. The majority were Team Lucy followers, who have become our extended support in all this. If it was about the cost, I said I would have given them free tickets just to come and see Lucy. It's not like she gets to be in public places that often. We are very picky about that and its based on her numbers. Don't misunderstand me, there was some family and friends there. Zach and I were amazed though at the lack of support from others. Sometimes we feel like its just him and I against the world now. and that can be a very confined space. I don't mean to whine, but it's something that really bothers me. And when I express this to other families, its the same with them. What is wrong with people? I know we are old news and all since this started a long time ago, but to us its everyday a new journey, and going to be for 2 years. And sometimes its scary, still. We had a close call last Friday. I was a bundle of nerves all day and crying, and had very few people to turn to. I just wonder where everybody is sometimes...that's all.
This morning I was checking in on some of our friends and their blogs and caringbridge pages. I haven't been able to do that for awhile. And after reading them this morning, I remember why. One little girl had leukemia, and passed away in June. It was horrible. And her mom wrote a blog post today about that day. She hasn't been able to do that until today. She kept talking about her daughter's last laugh, and not realizing that it was the last time she would laugh. And I couldn't imagine. And then another mom posted her video of her son going under for surgery like he does every three weeks, and that brought back a flood of memories from when Lucy had her first major surgery to get her port installed, and to pull bone marrow and a hip sample. That was day 3 into our journey and I can't believe how vivid it is in my memory. I still get a nervous stomach and almost cry. That is why I realized that I am not ready to read some of the other kids' journeys, not yet. I wonder how long it takes other families to do this? I wonder if I'm behind the curve.
Whew...that felt good. I have had all of that stored up and now that I got it off my chest, I feel much better. As I mentioned earlier, I have mostly good days, we all do around this house, but every once in a while, something whacks us out of the blue.......and I do want to thank those who do support us, you really do not know how much that means to us. We can't even express in words our gratitude. Thank you.
Thank you for writing this! I wish I had the nerve to say all that you have said to our friends/family. I hope yours read this and realize that they need to make some changes and that they are missing out on time with your family.
ReplyDeleteWe had a tragedy in our family a little over 3 yrs ago. We not only lost that family member (so to speak), we lost most of all our friends and 95% of our entire family.
My husbands 19 yr old son was attacked in the war and lost 1/2 of his brain, as well as almost 1/2 of his actual head. My husband flew to the hospital that the military brought him to and sat at his bed side for 3 weeks non stop. Long story short - his son is alive today, but he is not the same person he was before and never will be.
The husband that returned home to me is also not the same one that left and he too will never be the same again either.
From watching such a horror for 3 weeks and realizing the never ending loss of his sons life as it once was he had a mental/emotional break down. All of his family and all of our friends have walked away from us. They don't understand that while we are grateful his son is alive my husband is suffering in ways his own mind can not handle.
We are thankful for the few members from my side of the family that remain in our life.
But for the most part we walk this new path in our life totally alone.
I don't "get it". It seems people are scared that tragedies are contagious or something, so they stay away so that they don't "catch it".
Then again I hear of many other families who have a tragedy and their family & friends stick by their side and over never ending support.
So maybe we just always had a sucky family and group of "friends" and this tragedy showed us their real colors ;)