Well, Marshall is home sleeping as usual. He doesn't sleep at night and falls asleep round 3 or 4 am. He says it's seems to be very common with Chemo patients.
He doesn't look good. You can tell his counts are dropping. We are having Home Health come today to get his counts so he can see if he is able to go to the Preds game tonight. I sure hope he can go, but physically he doesn't look like it. I wouldn't be surprised if he needed a transfusion. I hope they come soon....it takes a couple of hours or more to get results, but the Clinic knows that these are a desparate need right now...They love Marshall. How could you not.....LOL
The school year is about to end, as Marshall's Cancer Treatment is coming to a close. I think we are all ready for this to be over in the physical sense. It will never be over.
The kids are playing their baseball games, I am working, Marshall is plugging along and all seems well.
I was supposed to go to a Information Coffe for Eve of Janus which Marshall in July will be the Jr. Honorary. It's a "coming out" formal for parents and their daughters. The money goes towards Vanderbilt Children's Cancer Research. I am pretty sure this is all right.....opps if not!
Marshall wants to help make more awareness to people of the need for Childhood cancer research. Did you know that 46 kids a day are diagnosed with Cancer? 2300 children and teenagers will die each year. 75% of childhood cancer is curable, but some are real sticklers and don't like to go away or not for long. At time of diagnosis, 20% of adults have showed the cancer has spread, but 80% of children by the same time have already had the cancer spread. It is the leading death in our children today. An average of 2 high schoolers a year have cancer. This is more personal....only 250 kids a year are diagnosed with Ewing's Sarcoma, and 1/3 have had it spread. Ewing's Sarcoma accounts for 3% of Childhood cancer, but it's the most come and malignant bone cancer.
With research we can help save these children's lives and give them a better chance at living a full life and have children of their own. The regiman that Marshall is on, was about 6 or more years ago a trial. Typically, a Chemo regiman is given every 3 weeks. That allows the body's marrow to rebuild itself back up and be ready for the next one. But with Ewing's Sarcoma it is such an aggressive Cancer that there was a trail to have Chemo given every 2 weeks and switch off with two different grouping of Chemo. I friend that I have met bc of Marshall....her son had a form of Ewing's Sarcoma and was in this trial. Bc of children like him, they were able to determine what worked better for these particular kids with this particular pain in the butt cancer. Survival rate has increased....
How can we ignore these facts based on our children? These children are our future and they are our little babies....no matter how big.....i don't a mother to stare into her son's see through skin. I don't want a mother to hate to flush her child everyday and have him hate the taste of the saline and heparin.
To see what the Chemo drugs does to these children. You can be all smiley and happy one day and feel like death the next. These kids are young but they will have an old body by the time they are done with the regiman. Then in order to heal our children as i have said before we have to kill them. we have to risk them to other cancers, and diseases for their future. so, we may save their present future but what about their future future...?
The Chemo drug "Doxy" that's what i call it, don't dare ask for the full name.....LOL is hard on your heart, so Marshall about three times had to get an EKG to make sure his heart was still strong enough to take it. and now, as all Ewing's Sarcoma and any other cancers that use Doxy...you max out. Marshall is done with it for life. BUT its the hardest and best Chemo to wipe this out. So, you see as we work towards the future and putting him in remission, the risk of it coming back is what kills them. You become limited on what we can fight this with.
Now, don't get me wrong.......I am not talking about Marshall dying on me or anything like that, but the risk, and the pressure on the body becomes so limited. It is a truth that must be looked at and dealt with.
I have spoken with other parents and their child may be in remission, but they hold their breath for 2 years. They turn blue when it comes to "scans" every three months to see if it's back. It's alot to deal with and i don't want these children to have to suffer like they do.
Yes, it's better now, and back in 1975 Marshall would have died from this. NOW he has the opportunity to survive this!!!!!! the survival rate is higher.....it still sucks for him but it's better than it was.
I don't want Cancer to be the leading death in our children. I want it to be the last cause. I don't want any cause, but Cancer is so hard. To watch a young child.......They are just beginning their lives and some have barely done that. To see infants be wheeled up in cribs and put in a room always brings tears to my eyes...i want to hold that child and love them and hug them.......i know it sounds silly, but the love i have for these children. Some kids don't have parents in their room. they have to work or have to balance the one parent family. Some live far away. Some come from hours away and it's not easy for us to just "go home" and get something. We have it so easy. Some kids are in there for 2 weeks at time or even a month. Could you imagine spending a month in the hospital and not really be able to go out? Marshall gets depressed with the 5 dayer....imagine the month?!!!!
We have got to come up with something better. I am tired of hearing the words "leukemia, sarcoma, ewing's sarcoma....etc....many ones i can't even pronounce)
I want it to be what it was before....rarely heard the word.
Also, we need to take care of these kids after! Insurance.....nope not gonna want them. What are they to do when they can't stay under their parents shield of insurance? what? pay for it on their own...along with the scans for a lifetime, and such. We have got to change this.
Maybe that is my role in life.....who knows......i am starring at a gorgeous salad that my co-worker brought in....so, my mind is now slipping and i am going to go for now......i be hungry!!!!
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