I don't even know where to begin tonight. I have so much on my mind right now that I feel like my head is spinning. I have been wanting to sit down and type for awhile now but every time I have a free moment to do so I am too tired, in fact I am barely with it now.
After Malina missed counts a few weeks ago we went back in on a Monday to try again, and she made it! It actually worked out well because my mom and sister were in town and could help with getting Jenna to and from school that week. I am always amazed at the blessings that show up in our lives everyday. It was really frustrating that Malina didn't make counts but it turned out to be a good thing. I originally thought that her and I would be in the clinic from 8 a.m. until 5 p.m. or later everyday for 5 days. That did not sound enjoyable to me in anyway. Well when we went in Monday we were told that she was getting way too much fluid for the chemo she was getting so what I thought was going to be 9+ hour days turned into 4-5 hour days! It was truly amazing!
Malina really did well all week. We even got out and walked around the clinic for a little bit. She loved going for walks. Her counts were low Thursday (June 12) and had to get some blood to help boost her. My mom and sister had left earlier that day so I had to make other arrangements for Jenna to be picked up from school since I would be longer than planned.
On Friday when we got to clinic Malina seemed to be having an off day. Of course it didn't help that we had already been there all week and we both were done. Well then her port wasn't wanting to work and that was just frustrating. She only had one side accessed and the nurse couldn't get a draw back on it. Not good! I was told that they would probably have to access the other side and work on the side that wasn't drawing. Dang! Malina HATES when her port is messed with. It really is an issue for her, I can't blame her! The nurse (Mary) decided that she was going to wiggle the needle around a bit in the port to try and get it to work. After a couple of tries and many tears by mom and Malina, it worked! So they didn't have to access the other side!! But it was still very traumatic for Malina and I hate seeing her sad. I wasn't very nice that day to some of the staff; I felt bad but dang it I am allowed grumpy, unsociable days when we are in clinic!
I am thankful for good nurses and good doctors. We really haven't had problems with any of ours. Now there was one that week who made me feel like crap. One of the NP's filling in for ours told me that they would not schedule Malina's scans around our favorite sedation nurses schedules. However, the head of our team Dr Neville was pretty mad when I told her that. Of course they were able to make things work for us, I would be understanding if they couldn't but it wasn't that NP's place to tell me no way and look at me like I was stupid. Some people!
Friday, June 27, 2014
Friday, June 6, 2014
Research Studies
Have you ever heard of Alex's Lemonade Stand? You should check it out! I have always heard of it and thought how great that it was to have something to simple giving to the research of childhood cancer. I never thought that it could directly impact my little world.
One of the research studies that Malina is involved with just received a large grant from Alex's Lemonade Stand to further the research!!!! The study is specific to Ewing's Sarcoma. They are trying to find if the tumors have markers in the blood. If so, are they shrinking with the tumor or growing. This will make it possible to have to do less scans on child and to know early on if the treatments are working effectively or not.
The doctor who is head of the study told me that there are approximately 200 new cases of Ewing's Sarcoma a year in the United States and 900 in Europe. There is a lot more research going on in Europe for this kind of cancer than here. He said that there are maybe a handful of studies specific to Ewing's Sarcoma in the United States. I am happy that Malina can be apart of this and hopefully, down the road, this will help other children.
The local Fox 4 news channel interviewed us and another family yesterday about the study. Here is a link to it.
http://fox4kc.com/2014/06/05/alexs-lemonade-stand-supports-kc-childhood-cancer-research/
One of the research studies that Malina is involved with just received a large grant from Alex's Lemonade Stand to further the research!!!! The study is specific to Ewing's Sarcoma. They are trying to find if the tumors have markers in the blood. If so, are they shrinking with the tumor or growing. This will make it possible to have to do less scans on child and to know early on if the treatments are working effectively or not.
The doctor who is head of the study told me that there are approximately 200 new cases of Ewing's Sarcoma a year in the United States and 900 in Europe. There is a lot more research going on in Europe for this kind of cancer than here. He said that there are maybe a handful of studies specific to Ewing's Sarcoma in the United States. I am happy that Malina can be apart of this and hopefully, down the road, this will help other children.
The local Fox 4 news channel interviewed us and another family yesterday about the study. Here is a link to it.
http://fox4kc.com/2014/06/05/alexs-lemonade-stand-supports-kc-childhood-cancer-research/
One Step Back
Malina was supposed to start 5 long days of out patient chemo yesterday, but that didn't happen. Her starting yesterday was all dependent on her blood counts. This is the first time that she has not made counts. Her platelets were just a little lower than they need to be. The doctors decided to let us have the weekend and come back in Monday to try again. If she makes her counts on Monday then she will start chemo and finish it on Friday. It will still be out patient but they will be long days.
It is a little frustrating to not make counts because then her whole schedule s thrown off. She has 3 more small chemo treatments before she starts getting her scans again and they all had to be moved a week. I know there is a reason for the change and that is ok. It is just hard when we have everything else set to her schedule and when it changes, it changes everything else.
One nice thing about her not making counts is that we will all get to be home this weekend together!
It is a little frustrating to not make counts because then her whole schedule s thrown off. She has 3 more small chemo treatments before she starts getting her scans again and they all had to be moved a week. I know there is a reason for the change and that is ok. It is just hard when we have everything else set to her schedule and when it changes, it changes everything else.
One nice thing about her not making counts is that we will all get to be home this weekend together!
They say it will get easier
I keep getting told that parts of this will get easier. I'm not so sure that will happen.
I hate that every time we get to the clinic Malina starts to have anxiety over being there. She gets fussy and crabby and clingy and shy. I hate having to be the bad guy and take her all the time. I'm supposed to be mom and protect her from all the scary and hurtful things in the world. I know I could not have prevented her cancer, but she is terrified of going in all the time. She is terrified of stickers, always has been and she gets a huge sticker put on every time we go in. That is about the worst thing for her. Malina SCREAMS every time the nurses are accessing her port and de-accessing her. When I say SCREAM I mean it. She is loud, red, sweaty and just hysterical. I HATE IT! It absolutely breaks my heart every time we have to do this. And I know it is mostly because she just doesn't like to have people in her space and touching her.
As sad and as hard as this is, I know that Malina is getting the help and treatment that she is in need of. She has had amazing doctors and nurses through out this process so far. Our whole family has been treated wonderfully by all those involved in her care. I know that she will be ok and I know that she is getting the care that she needs. In a way I am glad that she is so young so hopefully she won't remember all of these traumatic experiences.
I also know that this experience will make our family stronger. I know that I have a strong girl who never ceases to amaze me!
I hate that every time we get to the clinic Malina starts to have anxiety over being there. She gets fussy and crabby and clingy and shy. I hate having to be the bad guy and take her all the time. I'm supposed to be mom and protect her from all the scary and hurtful things in the world. I know I could not have prevented her cancer, but she is terrified of going in all the time. She is terrified of stickers, always has been and she gets a huge sticker put on every time we go in. That is about the worst thing for her. Malina SCREAMS every time the nurses are accessing her port and de-accessing her. When I say SCREAM I mean it. She is loud, red, sweaty and just hysterical. I HATE IT! It absolutely breaks my heart every time we have to do this. And I know it is mostly because she just doesn't like to have people in her space and touching her.
As sad and as hard as this is, I know that Malina is getting the help and treatment that she is in need of. She has had amazing doctors and nurses through out this process so far. Our whole family has been treated wonderfully by all those involved in her care. I know that she will be ok and I know that she is getting the care that she needs. In a way I am glad that she is so young so hopefully she won't remember all of these traumatic experiences.
I also know that this experience will make our family stronger. I know that I have a strong girl who never ceases to amaze me!
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