Jones Family

Jones Family
November 2009

Tuesday, July 21, 2009

The Latest

Brayden is still hanging in there. His energy level fluctuates from day to day. We've definitely seen his appetite diminish and he's having more trouble sleeping. With his platelets low last week (okay, almost to nothing) his poor legs are all bruised up again. We learned this is common when platelets are low. We're trying to ensure what he does eat is healthy. I was stunned to have to cut his hair. Even though it's still thinning out, it's definitely grown since we cut the faux-hawk. Isn't that crazy? We didn't even think he would have hair at this point to cut. Somehow I managed to do well on the trim with scissors and his faux-hawk is still in tact!

He's having fun with turning our dining room into his play room. We had moved all the decorations off the table because of our game day marathon the last two weekends. Well, he's taken all his blankets (which I keep re-washing) and made a little tent for himself under the table by draping them over the top and down the sides. It's so cute and he's having a ton of fun under there. I drew the line at him eating and sleeping under there. On a rainy day, I wish I could stay under there and play!!

We went back to clinic locally to get chemo on Monday and an update on his counts. He's still hovering above the Neutropenic line which means he still doesn't have a SAFE number of white cells to fight off normal germs that you and I come in contact with every day. This is the reason for isolation and our extra cautiousness on visitors and limiting our time out individually. When Bryan comes in from work, he's having to leave his shoes in the garage and go straight to the shower and washing clothes so Brayden doesn't come in contact with germs he might have brought in with him from work.

The other things we look for in his blood work each time is his platelets and hemoglobin to ensure he's not in the danger zone of needing a transfusion like last week. We were glad these numbers had come up more from last Thursday's update since the transfusion took place a week ago now.

We'll find out by Friday if his counts are high enough to proceed to the next block of treatment. Another unknown in terms of impact to him and his reaction. It will be after this 2-month block of treatment that he will have radiation. We don't know whether to wish for higher counts so he can go to the movies again and get out/have visitors more, or wish for lower counts so he can have another break from treatment.
I'm working on thank-you cards. We've been so appreciative of the support that has been extended to Brayden. I tried to say thank-you on here to everyone but we want to ensure that there isn't anyone that thinks us any less grateful because of the lack of a personalized note. Thank you to Uncle Sammy & Denise & the United Methodist Church in Richardson, TX, for the incredible prayer blanket. Thank you to Amelia for more Hangman pads - YEAH!! Thanks to Miss Wendy & Logan for the AWESOME turtle book and we can't wait to go online and adopt the turtle. Thanks to Miss Juli for never failing to send Brayden an email each week to help keep his mind on other things.

Please pray for Brayden. School supply lists are out, back to school commercials are on, his friends that are calling him are talking about school, and he has to wait. He can't go NEAR a store yet due to isolation. He wants to do his own school supply shopping, as he always has, so he'll have to wait. I've got some silly things in mind to help get him through, but I know it will still be hard on him during this time and not getting to participate in the Back to School events. As of now, he still will have to wait until January to return to school. We're still planning on working with him at home so he doesn't get behind in starting the 4th grade and I'm thankful he won't have to be behind and so thankful for a wonderful school that he's been a part of since Kindergarten.

7 comments:

  1. Just wanted to say how glad that I am that Bray is doing so much better this week than last. Alsi Braydin you smell like beef and cheddar. Pa Pa

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  2. Mrs. WelshenbaughJuly 22, 2009 at 5:26 PM

    Hey there Handsome Boy!
    We may not be in touch as often as we should, but we sure are keeping you in our prayers! We love you, Brayden, and we are glad to hear you are "hanging in there"! Our kids always loved making a tent or hiding place under our dining room table, too! Very cool!
    Keep looking to the Lord - He has great plans for you!
    Our love and prayers,
    Mrs. Welshenbaugh

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  3. Lisa,
    Thanks so much for keeping us informed through the blog. I read it often and continue to pray for strength for Bryan and you. I know Back to School will be a hard time and yet I know our God will be faithful to help Brayden over another hurdle.

    Brayden,
    I so admire your strength, courage, and faith that is getting you through this difficult journey of your life. Always remember God's faithfulness.
    The tent looks cool. I used to enjoy making them for my kids. It makes a great hide-a-way. We're counting the days when you can be back with us at ACA. Your mom will do a great job of keeping you caught up. You'll be back before you know it.
    Love and prayers,
    Mrs. McCall
    P.S. Since you're quite the chef with pizza, maybe when you return to school, you can send some my way. LOL

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  4. I was glad to see an update! Maybe I could go to the store and take photos of the BTS set and Brayden can do his shopping like a catalog. Too bad we don't have spy gear, you could wear an ear piece with a hidden video camera and Brayden can instruct you on what to pick up, inspect and purchase....where is 007 when you need him...or even dateline!?

    Can we do blog requests???? Brayden should write "A day in the life..." or I was just reading Diary of a Worm with Dylan last night and thought how cute if Brayden wrote his own story.

    With all this isolation, I can't wait to help you plan his big coming out party when all the treatments are done.

    I hope today is a good day...love you guys!

    Linda

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  5. Yeah, what a great idea, Linda! Count me in on the planning & fun of Brayden's coming out party, when that day arrives! Sounds like a lot of fun!

    In the meantime, get well soon so Nini Nett can come play with you in your tent, k? I love you & miss you oodles!

    - Nini Nett

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  6. HAY BRAYDEN I MAKE TENTS ALL THE TIME I MADE A TENT IN MY CLOSET JUST YESTERDAY ITS REALLY COOL I WISH YOU COULD SEE IT.JOHNTURNED YEAR OLD JULY 29.HES CRAWLING REALLY FAST KNOW YOUCAN SEE HIS BLOG AT jaybirdnwa.blogspot.com talk to you later got to go do chores my dad went to do some thing and my mom is at work

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  7. Hey Brayden, this is miss Hannah the crazy football lover like you :) I thought of you today because I was listening to the radio and they were talking about Arkansas and their football team. Are you excited about this season?? I think you are going to have to wear your hogs shirt and sit by the tv and cheer really loud when they start playing!! I will be cheering too! I miss you at rescess a bunch, and i am sure you miss it too. I am praying for you and your family as often as i think of you-which is quite a lot. I am glad that you were able to talk to your class today on the phone, i know they really enjoyed hearing your voice!!

    well i need to go and do some studying. (wish i had a big tent like yours ;)
    Hannah Welshenbaugh

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