Jones Family

Jones Family
November 2009

Sunday, August 9, 2009

Second verse...same as the first

After another week in isolation and poor Brayden going stir-crazy, we went Friday to re-check his blood and see if his count levels were high enough to continue treatment. We were hoping they were above 1000 (for his ANC level) so that we could get to the movies one more time. He's been wanting to see G-Force. (PS - he can't be outside much and needs to wear a mask when he does, so the Drive-In isn't an option right now, but one we keep checking on all summer long). Anyway, we found out his counts have dropped again to 240. Remember below 500 is Neutropenic. So we took another deep breath, put the mask back on, and headed home.

I try to be upbeat and positive on here. I don't want these updates to be a downer, but I also don't want to lead everyone into thinking we are super-positive and not feeling the negative effects of this diagnosis. We all are, including Brayden. I probably hide mine more but I don't want you to think it isn't tough for us. In fact, that's an under-statement. I try to be positive for Brayden, but also I want him to see me express emotion so he feels comfortable in doing so as well. That's a delicate balance because I'm almost afraid of what it would look like for me to REALLY express everything I'm feeling. He's gotten upset many times and week before last was probably the hardest for me as a mom in seeing him express these ranges of anger and sadness that I'd never seen in him before. It's not fair is definitely a normal emotion and one that he finally said. I was glad because he's taken this all in stride and has been so strong. But I want him to know he doesn't have to be superman through all of it. As a mom though, in those moments, is when I'm breathing prayers for God to help me to get through it while holding him and trying to reassure him without saying the wrong words. Those are the times when I literally feel my heart ripping. It's those moments when I want to protect my sweet boy from all the bad stuff and carry it myself for him. Isn't that what we're supposed to do? At least until they're older, wiser, stronger, and have more life experience behind them to face it? It's in those moments I reflect back at where the time has gone and pray we've prepared him enough to endure this 3-year marathon of treatment and impact on his body, mind, and spirit.

There are many days I feel like I can't get through it all and don't know how I will. I press on because I know Brayden is and I have to keep cleaning, preparing everything the best I can for him in this little bubble we're in for him in nurturing him until his body is strong enough to rebound those counts...only to go face the next treatment to blast them down again. It's an ugly cycle. I try not to get lost in the long-term or I don't think we could face it. It's literally still day by day and many times hour by hour. Or in those moments when he feels bad, isn't hungry and I keep watching him closely and checking for fever, it's minute by minute.

I again made sure with his awesome nurse that this is okay to be back where we're at. She's reassured me this is still okay. The good news is his platelets have shot back up and stayed up the last two weeks. His red blood cell levels are good and not in the range of needing another transfusion. There is an indicator in his blood work that last week wasn't high which told us his counts weren't on the way back up. I'm guessing they were pretty low throughout this past week and dropped and what we saw this Friday was them finally rebounding. That indicator on this week's tests was higher and shows that his counts are finally on the way back up. But it's a waiting game until then. Brayden is so eager to keep on and get it all over with, each week's delay is pretty frustrating for him, especially since he's restricted to the house.

I'm doing all I can to keep things fun at home and have special treats. Since he hasn't been able to have his favorite Sonic Happy Hour for many weeks, I'm making homemade cherry limeades for him some days. Bryan and I are wishing we can invent something to check his ANC levels daily. You know, like patients with diabetes are able to check their levels? I can see how blood work can be obsessive in determining your lives...what you do that day, where you can go, and what's safe to do. They can drop so quickly, as we learned 2 weeks ago when we thought we were starting treatment, so I feel the need when they're high going forward to do all we can THAT DAY because we won't know how long they'll stay high.

We've remained focused on being thankful. Brayden's nurse was reassuring me this was a long-term effect of the nasty, ugly chemo med we've referred to before, and that it stays in his system for a while. Her gentle reminder that she's surprised he hasn't been hospitalized for fever or neutropenia through all of this reminded me what a real danger that is and to again not focus on the time his counts have been low and he's been in isolation, but be thankful he's made it this far without those other impacts to his body.

Brayden heard me typing and asked if I could tell everyone that he says "thank you for all of you who are following my bloggie." Thank you again for everyone who is praying for him. We still never take that for granted and are so thankful. We're praying now that his counts are on the rise, they can get safely high enough to have some room before we start the next round of treatment. We're praying his picc line stays free from infection, since mom is doing dressing changes from home. And to think I used to be nervous about flushing it! We're praying God continues to protect his little sweet spirit from harm of the effects of this ugly diagnosis. We're praying his body stays strong and free from infection and the chemo continues to to work well with minimal impacts to him.

For now, I'm loving hearing his giggles in the other room while he's watching Tom & Jerry and enjoying being a kid. I'll close and run to spend time with him and enjoy the day...


  1. Hang in there guys you can do it! Sure wish you could come to ACH on Monday but it's not meant to be. I just had the reality of coming home and knowing that I can't live by the ocean (bummer). Thinking of you and praying for patience (for all 3 of you).


  2. Tell Brayden he is still in our prayers and we think about him often!!

    Safe Haven blog

  3. Thank you for the updates. Say HI to Brayden from us. We are keeping him in our prayers. We love you all... God is with you... always! Jeff & Esther

  4. Say hello to Brayden for us, we're praying for patience, for his counts to come back, for less isolation, and for peace for all 3 of you. Ken is supposed to set up the webcam today. I'll email you and we can set up a chat for the kids.

    With much love,

  5. Nini just wanted to say that I love you & am thinking about you today, Bray! Hugs & kisses!

    - Nini Nett

  6. What a creative mom you are for thinking up Sonic drinks to have at home! I just read the sidebar about the sea turtle, Mr. Incredible. WOW! That is so cool! What a blessing technology is to keep you all connected, in many, many ways! ((((((Big Hugs to you all!)))))) Amelia, Eric and Andrew

  7. Brayden, Lisa, & Bryan,

    We are praying for you guys regularly. We feel sad with you about the set back in treatment and can't imagine how difficult it is to be in isolation. Thanks for being honest so we can pray for the needs you have!! Lisa--you are a great mom, and I know that God will continue to provide you creativity and wisdom.

    Sending you our love and prayers--the Ottaviano family

  8. Continuing to keep you all in my prayers. I have a sonic suggestion that is one of my favorites. Root Beer Float (I hope he likes root beer) It's so refreshing and something a little different plus you get Ice Cream!!!
    Stay strong!

  9. Hey, sweetie. I love you with all of my heart and miss you more than words could ever describe. I can't wait to see you and for school to be over so that I can visit you more often. Until then, call me whenever you want to talk about anything - okay? Love you, Goofy.

    Aunt Heather

  10. Hey, Brayden, just want you to know that we teachers at ACA haven't and won't forget you; we pray for you often, individually and as a group. We love you and want God's best for you! We'll keep on trusting Jesus for those counts to be where they belong.

    Mrs. Caster