Seriously, I never thought that a birthday would look and sound so good. I turned 41 this year and needless to say, 40 has been a doozie. I have much to be appreciative for.
I could walk around today. I drove myself, I ate at Chuck E Cheese (which used to be sheer torture with young children, but now I find I enjoy it more). I did not have a fever. I got to be with my family and my parents (!) So glad that they are here.
But I think one of my most profound gifts comes from my children. They are just so stinkin’ awesome. I cannot imagine what they think about during a daily basis, but when they let me into their brains, I am in awe of their complexities and feeling.
So we went to Chuck E Cheese. Not exactly someplace that you should or would find someone who is currently undergoing treatment for a life threatening illness. It is loud, germy, lots of people with lots of kids (that you cannot control), mediocre food. If you have not been there, truthfully you are not missing out on much. BUT kids of course love it. They must pump some sort of “crack” into the air. They have a lot of video games, you know the ones that give you tickets for prizes? They must be laced with Heroin or something, because kids will do anything for a ticket. This is not a place the “old” Demara relished. In fact, when we were invited to birthday parties there, it is almost a punishment for parents. But I knew the kids would enjoy it. AND after transplant, it will be a place I have to avoid like the plague. So my birthday meal was Chuck E Cheese.
My youngest got there and just started screaming, “I don’t want to be here! I don’t want to see the mouse! I don’t want to play games! I don’t want to eat. I want to sit in the car in the dark and wait to go home!!!!!!!!!!!” Ahhhh yes, the 4 year old. I now know I do NOT have to spend $300 on a birthday party there for her. Then I started talking to her. She was scared to death of the “man in the mouse.” You could just watch her head work. “It’s a human in there isn’t it Mommy? Well I want him to go back to his house.” Endearing. Definitely a memory I want to go hold onto. She never played one game, never left my side and I was so happy to be there with her.
My middle child was also very intuitive to the whole process. We were driving home and he said, “Why did we go there tonight Mommy?” (I think he may have picked up on in the past that CEC was not one of my more favorite places). He said, “there are so many people and germs and you have the HLH and you have chemo…. why did we go there? ” I was surprised at the question. I asked, “well did you have fun?” “yes, I had a good time.” “Well Camden, sometimes that’s what matters. Fun.” He then took off with that and ran with it. “So don’t worry about the what ifs?” He said. “No, try not to worry about the what if’s Camden.” “Because they will take care of themselves?” he asked. “Yep.” He seemed to relax more than he had in a few days. He has been very emotional lately and “clingy” for him. He is worried. I can see it. But he then went onto say that God can take care of the “what ifs.” And I knew that he was doing ok. It is very humbling to have an 8 year old worry about you. They have had to grow up so fast. I ask a lot of all my kids, and you know what they have stepped up to the plate.
Still working on a time frame for Boston. We are still traveling in December. The biggest problem is that I don’t know how long I will be staying. That is highly dependent on my disease state when I go. I feel am doing ok. I have not had a fever. I have had a lot of leg pain ( It reminds me to slow down). And I restarted chemo, which initially I thought would be bad, but ends up not so bad at all (so far). I love/hate steroids. I am learning that the transplant world, as I know it anyways, does not stop. They have no worry about me being there over a holiday or problems in the middle of the night. I have stopped emailing when I am up in my steroid insomnia because the darn nurse would email me back at 4 a.m.! I did not expect that. I am hoping that it supports what a great team that I have. Now that being said, they don’t stop, but they don’t expect that you may have some scheduling conflicts either. I have been honest that it is difficult if not impossible for me to stay continuously through the holidays. I personally could do it, but they require that I have a caregiver. And well my caregiver is indisposed with caring for children, packing a house and then taking care of me also. He is but one man, and he is amazing, but give me a break. So unless they plan on admitting me, I don’t plan on staying. Let’s hope the HLH is in agreement.