Jones Family

Jones Family
November 2009

Tuesday, November 24, 2009

2 days to go...change of plans

What a day! We are all still catching our breath after an exhausting day. Brayden had a nice sleep-in until 10:30! We kept checking on him to be sure he was okay and there was no fever or anything going on. We were so happy to see Dad make it in safely last night FINALLY after a late start. Dad and Mom were up early - Mom was working...Dad was working on catching up on the paper! Seriously, Brayden still was feeling good this morning and woke up and had a great, late breakfast. I'm in such amazement what a stark contrast this round has been from the last time he had it. I so hope he can get by without going through that again. We're so close! Just 2 days to go with the yucky Ara-C.

Around noon it was time to head to Children's to the Oncology Clinic. Whoa...we knew it was bad when we walked in and there wasn't any chairs. We've never seen it so busy. After an hour and a half, we realized there was no way we were going to get chemo in time. We had to go to the Radiation center for Brayden's first appointment to get things set up and us acclimated with the facility and the process. A nurse came out and advised us to go ahead and then come back. Yikes. We left ACH and headed over. Brayden was in rare form - practicing his golf swing in the waiting room for Dad while I recapped his hospital stays, his diagnosis, his medical history, his prescriptions. I don't think it's set in for me as much as having to check that cancer box for the first time. Oh, that was hard. It's like that box is reserved for other people, not our Brayden. How can it be that after 7 months now this week, that still hasn't set in? I was so thankful for Brayden's humor and bright smile to distract me from the emotional impact of that paperwork.

We went back and got to speak to the Radiation Oncologist and his Nurse about the process. Within 30 minutes, our worlds were tossed upside down again. We were alarmed to hear his Radiation would be more than we thought all along and glad we questioned him. Thankfully, Brayden's Oncologist confirmed what we had been told - 8 fragments. The bad news? His Radiation Oncologist announced he'd start treatment in 4 weeks. I asked him - "4 weeks? No later?" His look said it all. He didn't get it. I said a little clearer, "Isn't that the week of Christmas?" His reply sunk me - "Oh. Is it?" WHAT?!!?! I know he's busy and this is our first meeting, but this time of year, I thought everyone knew the holidays were coming and the Christmas countdown. So that was the verdict. He'll have Radiation over Christmas - the 4 days the week of (including Christmas Eve) and the 4 days after (including New Year's Eve). We all looked like we had been kicked in the stomach. I begged...could we not wait 2 more weeks? Nope. The timing was critical. And, above all, we'll have to come back to Little Rock again for an appt to make the mold of his head gear that we thought they'd do today. Yuck. Poor Brayden's questions came a mile a minute the second the door shut. We were trying to keep him calm. None of us wanted to hear this. First Halloween then Thanksgiving and Christmas was just too much. Sure we'll be at home, Christmas Day, but we just didn't want to have him go through this at Christmas. The silver lining we were encouraging him to see? 2010 truly will be a new start for him - all the yucky, rough, hardest part of the treatment will be behind him and all maintenance in front of him. It wasn't enough to shake any of us out that stark realization. We're still trying to remain positive and slowly let this sink in and move forward.

We were all more than a little deflated and on edge. Plus it was 3 1/2 hrs past lunch. We rushed back to the Oncology Clinic and finally got to leave 3 hours later. I felt awful for the nurses. They work so hard and this had been one awful day for them too. We did a little something nice to cheer one of them up that has done just that for Brayden in the past. We hadn't gotten to see her in a long time because she's usually off on Monday's when we're there. Her tears and hug after a long, hard day cut into me. I forget how much they see. Right now Brayden's Oncologist is on the floor and ICU and will be working Thanksgiving Day and is dealing with so much himself. Another sweet little girl from our area whose future is so uncertain and hangs in the balance. It was a good reality check that even though this has been a bad day, we aren't alone and still have so much to be thankful for. Although my heart still breaks for them. We were lucky tonight. We didn't have far to drive this time. We were able to grab some food in the cafeteria and at least Brayden was still eating. We made the most of it by watching National Treasure after finally getting a treatment bed to start Brayden's chemo.

We're here snuggling down for the night. This is the first time Brayden's port has stayed access and he's a little weirded out by it. I am too. Especially after reading another mom's story how her son's was bleeding everywhere in the middle of the night. Hello. It's not likely I'll sleep well tonight without thinking about that and getting up a million times to check. We're so close and hoping he can still continue to get through it well without fever, without his counts plummeting, without impact to his system. Thank you all for the comments! Brayden had some smiles and laughs tonight reading them with me. Here's hoping tomorrow is a better day, and Brayden continues to stay strong!

11 comments:

  1. I am so sorry to hear of the radiation schedule. I am just so so sorry. I agree, start the new year with a fresh start - all bad treatments behind you.

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  2. Lisa, Brian and Brayden, I pray God continues to give your family the strength and courage to get through this time. It's got to be so hard, but with the Lord on your side, you will come through the other side, better, stronger and forever changed. Thank you for sharing your highs and lows, your fears and faith. I pray for many more holidays for your family that will more than make up for missing this year. Blessings, Theresa H - MOM Northfield

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  3. We'll be continuing to pray for you guys. It is kind of sucky timing but hopefully like you said 2010 will be a year without all the hard parts!

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  4. Heeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeelp!

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  5. This comment has been removed by the author.

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  6. Hmmm ... don't know what I did to remove my entry!
    Sorry this week was long (especially Tuesday) but I must selfishly admit that I enjoyed seeing you every day in clinic!

    Hope you have a Happy Thanksgiving!

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  7. Happy Thanksgiving to all of you from the The Hill Family of Northwest Arkansas. Juli is looking forward to seeing you in class again. We continue to pray for you all.

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  8. Happy Thanksgiving! We love you guys & miss you more than mere words on here could express! Just know that you're in our heart & on our minds 24/7 & that we can't wait to be celebrating all the holidays & all the other days in-between with you again soon!

    All our love today & every day,

    Papa "D" & Nini Nett & Hershey too!

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  9. Looooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooove and miiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiss you.I hooooooooooooooooooooooooooooooooooooooooooooooope you are having a great Christmas seson.

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  10. gooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooop.ha ha

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  11. Dear Brayden I am Isabelle's Grandmother. I am so sorry that you are not well and a will pray everyday that you get better. The Lord will always be at your side helping you.

    Helen Johnston

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