Jones Family

Jones Family
November 2009

Wednesday, September 2, 2009

September Already?

I had been in disbelief at how we arrived to the month of September. I feel like we missed summer completely. Was it even hot? And now this weekend says goodbye to summer. I'm hoping we'll be able to do something fun this weekend for Labor Day. We'll have to be creative and think of something.

After our roommate got to go home yesterday evening, we were surprised to not get another until noon today. I was thankful for a peaceful night's rest with only a couple of interruptions for "commercial breaks" for Brayden. We both slept so much better last night. Brayden unfortunately had an emesis episode this morning. He amazes me how he can give me plenty of warning. Not to dwell on the topic, but it's not one of those things that I know is coming that far in advance when it happens to me. Anyway, poor guy had his nurse laughing. He was apologetic but relieved at how much better he felt and that he'd rescued his pill. Since he really did perk up after and cleaned up again, he kept his meds and water down. I was hesitant, but he decided he wanted to go upstairs to the School. Thankfully, he did great! And they were able to get through a lot more work with him than Nini or I have been able to the last couple of days!

Nini's brilliance with pushing fluids continues! She had bought Brayden some of those Crystal Light green tea flavored water packets? It was about a month ago and Brayden LOVED it! He downed a ton of it and I told her right away we had to get more. Thankfully, I had some in my emergency bag in the car that we had to use. I'm glad it was there. Before noon today, he hadn't been drinking hardly anything. It's really important that he does so he's able to flush the toxins from the chemo out of his body much quicker. After trying and trying, I remembered the packets and 64 oz later in just 6 hours - we've gotta be flushing SOMETHING!! He loves the stuff! And if it helps him drink more water, then our work here is done. They just drew labs so we'll see if we get to go home tonight. It will be a late night but it will be worth it to wake up in our own beds tomorrow morning.

I had to share two quick stories: Brayden is certainly the little charmer with his Nurses. Surprised? A relief nurse came in a few hours ago in between shifts and told us she would be helping us for a bit. She said she was told his room was so much fun, she wouldn't want to leave! So sweet! Then when it was time for her to leave, she told us what a nice young man he was. We heard from someone else how they had observed how joyful Brayden was. WOW! I had just prayed about that a couple days ago! His joy is definitely sustained and I'm so glad the diagnosis hasn't taken that from him. Another thing to be thankful for...Brayden is an incredible young man and even though we're biased, we're seeing it through the eyes of others. I'm honored to be his mother and pray we can do all we can as a family and group of friends to support him and be there for him through all of this.

We miss Daddy. We know it's hard for him not being here with us. We miss him and feel bad he doesn't rest as well without us home with him. But it's a short time and he'll be plenty tired of us soon enough when we're back home. Thanks, Dad, for DVR'ing the Cowboy's game. Who cares that it's pre-season? It's the COWBOYS!! Thanks, Dad, for taking care of Hershey-Dog for us (have we ever told you her nickname is HD?).

In my lament of September arriving, I wanted to share something with you. We were so clueless before Childhood Cancer forever changed our lives. Our hearts will never be the same. I guess that isn't all bad that we are changed. After all, our eyes have been opened to all the many more types of childhood cancers and the daunting numbers of those diagnosed. I know we all hear about adult cancers. Another dad of a kiddo being treated here said recently he thinks maybe talking about this topic is too much for some people and instead of educating ourselves, we all run from it and don't want to talk about it. I'm amazed at how much is being done yet how much is still unknown. Another kiddo we've come to know was here today and it reminded me of his story. Just 4 short years ago, they didn't treat boys with A.L.L. the same way they treat them today. Unfortunately, this caused this young boy (now Brayden's age) to relapse with another type of cancer. So sad. After almost breathing a sigh of relief just pushing the 5-year Remission mark, it hits again...with a vengeance. It's just more than any child should have to endure. Seeing yet another little girl this week (with my mom here) nearly sent her into a tailspin. This sweet little girl we met 2 months ago. She was diagnosed just 5 days before Brayden. She has the more common type of ALL and isn't on the High-Risk protocol. Yet she looks so frail and fragile and her mom told me of their recent 4-week stay in the hospital, of feeding tubes since she couldn't maintain her weight, of difficulty walking and having to halt chemo treatments until her body was able to resume fighting the horrible Leukemia to prevent it from returning and taking over. It's too much. Please read how widespread Childhood Cancers really are...September is Childhood Cancer Awareness Month.

•Each school day, 46 children are diagnosed with cancer.
•One in 330 children will develop cancer by age 20.
•Each year in the U.S. over 12,600 children are diagnosed with cancer.
•Although the 5 year survival rate is steadily increasing, one quarter of children diagnosed with cancer will die 5 years from the time of diagnosis.
•Cancer remains the number one disease killer of America's children - more than Cystic Fibrosis, Muscular Dystrophy, Asthma and AIDS combined.
•80% of children have metastatic disease at time of diagnosis as compared to only 20% of adults.
•There are currently more than 270,000 childhood cancer survivors in the U.S.
•Late effects of childhood cancer treatment are common in survivors, and approximately one-third are moderate to severe.


1 comment:

  1. Thank you for educating us on September Childhood Cancer Awareness Month. I know it can be hard to feel the gratitude some days and others it is the only feeling you can swallow. You are doing such a great job portraying a loving and grateful mother. I am so proud of you! Brayden is so lucky to have you.