It's been a week since her chemo has ended and it feels lighter already in some ways. We are finally able to exhale from our regular trips to DC. David has yet to take Jasmine to her last two images before we can official be seen on a three month basis. Unfortunately we will also have to follow with neurology as well. At Jasmine's last and final chemo regimen, she had a seizure. We were in the room when it happened and caught by surprise. She had just finished with the last drug when about 20 min after she froze and was staring into the distance. Her eyes were fixated and her mouth was making some sort of involuntary movement. Her legs and arms were positioned in the fetal position. They was a slight tremor throughout her body and her hand was firmly gripping a toy that I could not pry. I kept calling her name and she didn't respond. We called for help and opened the door to have someone assist us immediately. I saw drool come from the side of her mouth and her lip turn gray. I panicked and let out a "oh my God, Jasmine". Feeling helpless, I just stepped aside as people started coming into the room. I relaxed slightly when the nurse stated she was still breathing. It seemed like forever, but it was probably no more than a solid 2 min. This was something I hope to never experience again. After talking about this with neurology and oncology, I'm feeling that this might be more of an isolated incident. Either way, now we are faced with carrying a seizure version of an epi pen.
Jasmine's starting to really excel. She is a lot more verbal (no true words, but definitely trying to say something). She has shown us that she really does understand and grasps much of what we have been trying to teach her. We are now the ones that are learning. We just sit back and let her show us what she can do. Of course, there is the occasion stern correction for bad behavior. She is challenging us in new ways. It only means that she is developing and growing. Her personality and abilities are really starting to come out. Her new interest in drums, her absolute love of water, and her interest in mechanics, are just a few. I love how she is starting to help me with cooking. She's got such a great memory. She remembers where the cookies in a store if we've only been there once. She remembers what we need to make grilled cheese or pancakes. She's waving hi and bye, and even signed (once) thank you. We have lots to be thankful for.
As far as her health, we can not truly state she is in remission just yet. We have yet one more scan to do and have her port removed. It was unfortunate that we were unable to make the appointment made for Jasmine to do this but are hands were tied. It was on a Monday first thing in the morning. David didn't get off from work til 5:30am Monday and I had to go to work as well. The kicker is that we have one definite car. The other car has not been working for a couple of weeks now. It doesn't have long even with its most recent fix. Let's just say its a point A to B kind of car. Its not something that should do highway time. David just had a very long day at work and would be late to the appointment anyways. I had to get to work no question. It was all wrong.
Like most of what we have gone through this past year, we know when it rains it pours. Not only do we have a 50/50 car we just use for short A to B trips, we had a HVAC system on the fritz. It was 17 yrs old and now going to go bad. My sister was nice enough to assist us in facilitating a much needed repair during that hot week we were gone. It was brutal on the dogs. 96 degree days outside who knows what it was inside with no AC. We knew our time was running out and needed to make a choice. HVAC or car. We knew there were specials and rebates at this time, so we got the new HVAC. You can get AC window unit but you can't get a heater to keep the pipes from bursting or keep you warm in the winter. This house has had more emergency improvements during her treatment than it had received before. October it was the well water pump, April it was the plumbing/ septic backup, and now the HVAC. I will not dare say what I think will be next. I'm actually trying to think up a sensible plan for it. Semper paratus. Seems to be the way I think and glad I was once apart of a service that exemplified it. I guess I should get ready for the soon to be mental breakdowns me and David are near the verge on. Its like that whole fight or flight thing. The fight part seems to be over and now things are starting to surface. Things I can't even begin to explain or we can't even seem to sort through with any clarity. Mixed emotions, views, life outlooks, our future..... Our life is a mess but we can only do one day at a time. I no longer have respect for the standards I once held. I still try to pay my bills on time but don't sweat some of them. So what if their a couple of days late, I'm going to have a smoothie for lunch. I'm going to suck that smoothie down and enjoy it. My sanity needs to remain intact. I will not overload my mind with heaping loads of stress, or petty nonsense. I'm no help to any one if I can't keep that together. The smoothie is my moment of freedom and complete relaxation. Its the only me time I will have all day. It's my get away from our daily grind.
Me and David talked about lots of things yesterday. What it all came down to was that we were jealous of everyone's normal. Everything from date nights, weekend getaways, me time, lounging with friends for an evening, things we never really awarded ourselves as frequently as some. Why? Because our daughter has required more of us than most parents have had to deal with, family is not a hop or skip away, and sometimes we couldn't afford to. Not to mention, our work schedules that allow us to be sole care providers to our daughter. Yes it cuts on childcare costs, but at what expense. We rarely see each other for more than a couple of hours. Family time? When? When we tried to point the finger, we couldn't narrow it down to anything or anyone. We were wasting our time looking for an answer. It was then that I realize it was no one's fault. We were dealing with this because this was life. It has its down sides and it has its ups. Right now we were dealing with a down slope. It could have been a trench if it were not for the big help we received. Everyone will have their own trials to deal with at any given time. When things look up for us, I'm sure the opportunity to help someone in need will arise. We can only do what we know is right and pay it forward. We were given this struggle for a reason, its our own personal strength building path.
David laughs. In what was just a moment of tears minutes ago, I have turned into fuel for a blog. Funny. I used to think that blogging was helping people better understand what it was like for a parent to go through this with their child. I wanted to write about how strong Jasmine has been and what a warrior she is. Now I see it as a cheap means of therapy for me. I should rename this blog "OUR FIGHT".
