Yesterday Em had her second Remicade infusion. It went "better" than the last time, in that the first nurse only blew 2 veins and another nurse was able to place the IV on the 3rd try. Once the IV was in, the infusion went quickly, and I think we only spent 2.5 hours there total - a huge improvement over the 7 hours we spent last time!!
She woke up this morning with a headache and said her tummy hurt but she still wanted to go to school, so I let her. We'll see how long she ends up staying. I suspect they will be calling me within a few hours to come pick her up.
One thing I have learned about myself is that the process of her having this chemo, in an oncology lab, with very sick kids all around, is that this is really, really hard. As a mom, your job is to put on a brave face and be the pillar of strength for your child; they look to you for that strength. But twice now, after I am all alone and the kids are in bed, I have found myself sobbing. I'm trying to understand exactly why. There is the obvious reason of hating this disease in my own child and wishing it would just go away. I am angry at every drip of this nasty drug that goes into my child, suppressing her immune system, making her completely incapable of fighting off a simple cold. I hate the effects (which thankfully, we haven't seen yet) that are possible with this drug, knowing that we could very well be the statistic that ends back in the oncology lab receiving chemo, but for a completely different reason: cancer. I am angry that Remicade may end up being Ally's fate too when the disease decides it wants to be known in her body.
I didn't intend for this to get so sappy, my apologies! I do, however, feel that it is important to be transparent during this process so you can see how desperate I am to find a cure. This is not the way a 5 year old should have to live.
There are currently seven $1M research grants going in Denver, being sponsored by the CCFA to find a cure. THIS is where your money goes. I want you to know, from the bottom of my heart, that YOU are making a difference when you donate to this organization.
Thank you to everyone who has supported us so far. You can't possibly know how much this means to us!
We NEED to find a cure! And soon! When Heather was around 10 yrs old, I thought she had eaten something that just didn't agree with her. This happened often-way too often. Then the leg aches along with "I just don't feel good, Mom". One Dr visit after another. One blood test after another. Losing weight, along with just not thriving. As her Mother, this broke my heart. I called her Dr and told him, "there really is something wrong with my daughter! We HAVE to find out what it is now!". Testing began at Shriners Children's Hospital, ASAP! Crohn's was finally found in her intestine. We had never heard of it, nor understood it. When one finally has a diagnosis, it's amazing how quickly one goes into survival mode!
ReplyDeleteSister's For a Cause is doing just that! Taking action with newfound energy to get the word out to friends, family, businesses, community, social media. They are on a mission! Every cent you donate goes to CCFA! Let's find a cure! Thank you!
This ugly disease has hit our family 3 times. Both of my granddaughters and my daughter. No donation is too little. Your dollar may be the one that makes a difference in a child's life. There is no cure! But we are on a mission to find one! Soon! Spread the word to your friends and they will tell their friends, and then the march is on to find the one thing that starts this ugly disease within our body. If no one in your family, or none of your friends has this disease, this is greatness! But if you do have family, or maybe you are the one, that has this disease, then you know how important this mission is to find a cure! Donate whatever amount you can spare...it's all goodness to end this disease forever. Thank you very much!
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