Much has happened and where do I begin? HMMM?
Okay, so we spent Christmas Eve and Day at the hospital. It brought tears to my eyes at times. I was slightly depressed but it all changed. Jasmine had many visitors from people whom I've never met. People had dropped off gifts and books for the children who had to stay during the holiday. One group was from the American Cancer Society: The Madison Relay. They came in and asked if Jasmine would like a bear. I said she would and they presented the bear to her. She grabbed it questioningly. They asked if she could get a picture of Jasmine holding the bear with them. I okayed it and Jasmine hugged the woman. It instantly brought tears to my eyes. The other girl showed off her hat to Jasmine. It was a hat that was very animated and lite up. Jasmine was amazed and thrilled. I thanked them as they proceeded to leave. Jasmine threw a fit and started crying. I wish I didn't cry because maybe she wouldn't have. They felt bad about leaving too. The next was the nurse delivering a box full of all sorts of things. Coloring books, socks, a brand new stuffed animal of Tigger, and a puzzle. Of course Christmas morning came around and the night nurse told me that Santa usually flies in and delivers gifts. He did come and deliver a whole new set of toys all wrapped. I could not believe how much she got. I expected one gift of all the ones he was holding but not the load he dropped on her bed. I took a picture with my phone after I woke up from my aww shock. As he hurriedly posed, I snapped the shot, shut the phone and forgot to save. Either way, I'll never forget it and I know Jasmine was content throughout the day. We received some excellent news about going home a little bit later. David came and I told him the good news of being able to go home that afternoon. It turned out that we actually left in the evening but it was worth it.
It had started to snow but we had been through this number before. We just drove slow. When we got home we opened some of her presents, all except one. The dollhouse would have to be saved for the next day. There was way to much to try to put together for that evening.
Sunday came and I put the house together. It was a lot with very little directions to add to the situation. Poor David wasn't feeling well and he tried his best to keep clear of her. If he was home, Jasmine was going to want both our attention. He printed me out a large picture of it and I had to rely on my instinct. It was great. When we brought the house into her room, she was thrilled. David and her played while I took pictures. I was glad to have gotten it for her. It was a winner. This girl had more toys than we would have ever imagined for her Christmas.
This takes me to week 13. This past week was different because we got home a little earlier and they have started to drop some of her chemo drugs and lowered the amount from her regimen. This was kind of the real hump of her treatment. We still have the full 36 weeks which ends in June. I claimed to have been at the halfway mark much earlier. Apparently, my math is very off and it still is. However, this is a big deal even if I can't claim it still being the halfway mark in her treatment. This means technically, we would have one less day of chemo. Unfortunately, Jasmine had decided to put a wrench in it when most of the time its because of some hospital schedule issues. She decided to hold her urine and not put anything out during prehydration. I couldn't believe she did it again. Why couldn't she do this at home? She's so capable of being potty trained. It was absolutely ridiculous. We waited and waited....and waited..... Dear God, it took her til 10:30pm to let loose. Now we could start chemo. The day had passed but this means we would be leaving either very late the next day or the morning of the next.
The chemo went well but she was in a bad mood most of her stay. She was very irritable. I know she was frustrated with having to be there and go through this but you would think she would be used to it. She had officially lost all existing hair from her head, eyebrows and had few remaining lashes. Her skin had gone through the changes and her entire body knew it, so why the fuss? It was going to be a shorter stay that she unknowingly turned into a regular stay. I wish she could understand. She understood when it was time for us to leave and go to the art room. She was always up for a trip down the hall, to the playroom, art room, etc. The minute we got back to the doorway of her room she would breakdown. The nausea medicine did wonders as long as we could keep her from smelling or looking at food. The food cart would always be there when the art room was going to shutdown for lunch. The smell would engulf the whole floor. UGH! So gross. I will never understand why they put a cart of smelly food on a floor full of chemo patients not wanting to eat in general. If they did eat, it was minimal because they knew what it would set off sickness. Anyways, it was always a time that we had to go down the hall. We prayed every time we left the art room. First for no meltdowns when we scooted her out the door and the second for not getting sick. This time she voluntarily walked out on her own. That was a first. As they day progressed she got more upset with everything and my head was pounding. The pain was sort of unbearable at times. I felt like my vision was not so great either. Her meltdowns were not helping the matter.
When we left and got home, I felt terrible and she was full of energy. I took some more tylenol and slept until I couldn't sleep anymore. I had the opportunity to go to work for a bit but opted to take care of myself. Either way my vision seemed to be a little shotty, so driving was not a good idea. I actually should have let David take over the driving but I'm stubborn. I wonder where Jasmine gets that from? :) Jasmines mood was still off but she was home and she knew that.
The next day, things were back to normal. I was getting ready for work feeling much better and she ate her normal stuff and took her nasty medicine well. I worked my half a day and did some quick grocery shopping to get us through the weekend and part of the week.
Today, Jasmine has been super full of energy as usual. She has also managed to get into a lot more. She playing differently and learning how to do things that she shouldn't do. She has learned how to: open the oven, take my pot holder, figured out most electronics in the house (computer, David's DS, cellphones, VHS, DVD, remotes) and lets not forget how to empty all the clothing drawers in the house. She's learning to mock and imitate...this one just really gets me. In fact it amazes me. It seems like the moments I've been waiting for have finally arrived. She wants to actively participate and for us to be included in her setups. She's growing and developing again. She's getting older and her understand for somethings has taken off. I took her out after we played with her new ice cream playdoh machine, to get some real ice cream. What a hoot?! I tell her we are going to get some ice cream with rainbow sprinkles on it and she's ecstatic. She's flailing her arms and hands with a big old grin her face. I'm happy that she is happy but know this a long way to go for just a cup of ice cream. 20 miles for a cup of ice cream that she can picture. I get her shoes on and she waits for me to put mine on. I got to get her coat and she knows we are going out. She does not fuss but help me instead to put her coat on. We head out and on the road, the whole time I'm talking about the ice cream and I look back to always see a smile. I get to the exit and I turn around to find a sleeping Jasmine. GREAT! Well, I park the car to an empty parking lot as I expected on a VERY cold evening. I get Jasmine out of her car seat and tell her we are going in to get the ice cream with sprinkles. She awakens and she notices the picture on the window of a ice cream cone. When we go in, a teenage boy and girl come to the counter with big smiles. I order a small cup and get a heaping lot of ice cream on a cone. He asks me what kind of sprinkles and I told him rainbow. Jasmine watched everything from the ice cream coming out to the sprinkles being added with such attention. Shes flails her arms and hands, grins with excitement. In my head the music plays, "I"m so excited and I just can't hide it, I'm about to lose control and I think I like it," (Pointer Sisters). This was a great idea. The music in my head pics up with "La,la la,la,la...la,la,la,la,...." a part of,"Loving You" by Minnie Ripperton. We go to sit down at a small table in the corner. I let her have the first bite. She had some and then I can see how quickly it starts to melt. I go to give her a second go at it and she starts crying. I can't even get her to sit in the chair without falling over. Crap! I'm stuck eating this more than what I wanted ice cream. As a matter of fact I didn't even want ice cream. Wasted gas, an overpriced ice cream, a screaming child and YES an additional butt. What more could a woman ask for? At least I got a couple of really good smiles. The things we do as parents.
Well to close this long update, I'll say that I'm grateful that she has taken this chemo as long as she has so well. I am thankful that her scans are coming back negative. I'm grateful to all those who have donated to Amanda's Marathon Run (Jasmine being her cause), supported us, helped us, and prayed for us. I know we are still heading down the road and its not over yet, but its the close of a year that we will never forget. Both for its positivity and negativity, we are hopeful coming into the next because of the love and support of others around us, near and far.
Next long treatment, we start the genetic testing. David and I will get our blood drawn, be counseled in a few weeks and in a month have a complete work up. From CT, MRI, and physical. We hope to help find answers to the reason why Jasmine has come to have this cancer as well as others.
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