Jones Family

Jones Family
November 2009

Friday, June 12, 2009

Movie Week!

After a rough time of it last weekend, we were so glad Brayden was feeling better earlier this week. We were still taking it easy and sticking with the bland, carb, starchy stuff. Brayden asked for rice. White rice hasn't existed here for about 2 yrs, so I'm thinking is fiber rich brown rice going to HELP his stomach!?!? That was a funny conversation. White bread? No go either. But we made it through. He did so great. I kept encouraging him and we were planning for the good times. So, once he'd had his first good day of keeping everything down (water first, then bread, then meds...and so on) we wanted to surprise him. We pretended we were at the Drive-in (which he LOVES to go to) in our living room! He'd been reading Charlotte's Web with his class and it had been years since he'd seen the re-make with Dakota Fanning? So we got it all set up and had such a good time getting our minds off of everything! Sure, no popcorn or movie candy, but we had so much fun.

Tuesday afternoon we headed back to Little Rock. We had to be in clinic at 7:30 for another spinal sedation. Have I mentioned Brayden is going to need to go to therapy after this? Each week he asks urgently, "Do I get to have the dizzy medicine? Do I have another spinal?" Mom quickly keeps reminding him it's for medicinal purposes only and if our bodies aren't sick we shouldn't look forward to that medicine and won't need it anymore! It's actually cute that he doesn't have any anxiety about it. Me, on the other hand, am thinking of joining in with the dizzy medicine for these procedures, trips to the grocery store (which thanks to my sweet hubby I haven't had to do in a few weeks) and outings. We're thankful for a night in different surroundings (sometimes) but it's still stressful watching out for germs. Thanks again to the Clorox team for the donations! Anyway, we found out in clinic the next day that we had our favorite sedation nurse. She's awesome and has totally gone above and beyond to take care of Brayden for the 7 spinal sedations he's had. We love her and she thinks the world of Brayden. Last week we met a new sedation Dr. and he is so neat! He stayed and talked to us for 30 min after the procedure was over and Brayden was awake again. He was complimenting Brayden's resiliency. I love that word! It just really gave us a boost to hear him talk about our sweet boy and encouraged us that hopefully we're doing something right in all of this. We heard lots about discipline later from another Dr. Apparently we're doing good after having to correct him for confusing sarcasm with sassiness and pushing it too far with a nurse. We've definitely tried to hold the line with him. Early on, he definitely pushed it with Dad, just to see how far he could get. He realized quickly nothing in that department was changing, which is really hard sometimes. His Dr. told us, "It's my job to help him recover and get him to remission. After he's there, the monster you created for the last 3 years by not disciplining is who YOU have to live with!" So I guess we're doing okay there too.
Anyway, the spinal again went great. Each week they are removing spinal fluid and injecting chemo meds to fight the leukemia cells that were found in his brain the first week. This is part of this treatment regimen. Brayden, again giddy to get the dizzy medicine, inevitably has everyone laughing when we come back in. They've told us it's a kind of truth serum, so mom's tried asking a million questions when he's coming out of it. No dice...I say either he's already incredibly honest or the truth serum doesn't work!
Prior to the spinal, they always draw labs and that's what we're eager to here: how his counts are. Turns out he was REALLY anemic. His sedation Dr. that had only met him the week before said right away he looked pale. I felt bad...I guess I missed it. Seeing him everyday didn't stand out with the change they saw from 7 days ago. This was the day we were excited to hopefully leave clinic before noon. WRONG! 2 units of blood have to be given over 4 hrs PLUS prep meds PLUS post nausea meds for the right home. We were there for a LONG 11 hours that day. BUT - on the bright side, we didn't have to be admitted, he isn't neutropenic, and we didn't have to get blood here which would have required a 2-day hospital stay. They are still stunned he's rocking the faux-hawk with lots of hair still. We definitely lose a lot each day, but it's hanging in there! There's also stunned his ANC counts were above 1000! The typical person's is 10,000 and when Brayden falls below 1,000, it's isolation. Below 500 is strict isolation and neutropenic. So they encouraged us to get him out quick because he only had a few days before his counts dropped off. They've also reassured us many weeks we may not be able to get treatment due to his low counts, so we'll have to miss a week of chemo while he recovers. Another mom encouraged us to celebrate those breaks that you get!!
He was very sick that day in clinic between the sedation (methotrexate), 2 shots in the legs while in sedation (PEG or Asparaginase) and Vincristine iv push. Luckily no oral meds now that we're done with the 2-week chemo regimen for that. So home meds are really down to only 6 on some days, 10 on others. So they pumped him full of meds again. He ate a quick lunch and mom was begging him to drink some fluids. It still amazes me he could not feel well and still act so full of energy! His blood pressure, you can see in this picture, was very low. So we again said a prayer of thanks for the blessing of the blood that a blood donor had given to help Brayden.

After Zofran, sedation meds, Benadryl, Tylenol, Oxycodone AND Phenergan, we were assured he would be OUT all the way home. Really? One thing we've noticed is these meds don't seem to affect him as much as they would me, who would be laying over drooling and totally out of it! He hung in there until it was time to finally go home. We had a VERY long drive hitting a huge front of storms that was extending all across Arkansas. We pulled under an over-pass in Clarksville to wait it out when the rain was so heavy we couldn't see the road. It sounds like it was pretty bad, so I'm glad we hung out there. Brayden was fine and wide awake and we started noticing how much color he was getting back in his little cheeks! We finally made it home around 10, never so happy to be back.
So I'm having this urgency to do what we can do while we can. We decided to surprise Brayden and take him to the movies last night! We used to go fairly often and this was his first outing to somewhere other than Little Rock and the hospital in 7 weeks! We did all the prep we needed to (thanks again to another mom for the great advice!) Luckily there were only 2 small families there not close to us. Nini & Papaw came along with us to see Night at the Museum: Battle of the Smithsonian! Brayden LOVES the National Treasure series and the Night at the Museum movie. We took snacks, Clorox wipes, masks, bottled water for him and a huge blanket to lay over his seat, and tons of Germ-X. It actually went very smoothly and we had a GREAT time escaping for 2 hours! Luckily I didn't need any anti-anxiety medicine too desperately for the outing. (I seriously don't have any but if you have a hook-up, just let me know.) You could tell by all the awesome giggles and smiles Brayden had a GREAT time! We were so happy to go and get to have this treat we may not get to have again for a while.

One more week of another spinal (Yeah, more dizzy medicine!) and it looks like we're done with that for a bit. We'll have to be admitted in 3 weeks and it looks like that's when he'll get his port put in. As well, we'll go back to the yucky meds that made him sick for another two weeks, but after that, we move to the next 2-month block of therapy. There are 6 blocks in Phase 2 and each block lasts 2 months, if there are no interruptions due to low counts or infection. So that's what we're up against. We're so thankful he's staying strong and doing so well! We're praying he stays strong in spirit and continues to be resilient. His attitude, even with the sickness, has been so great. Thanks again for the calls! Thanks also for the comments on the blog. We read them all and go back to old postings to make sure we didn't miss any. We are so thankful for all of you!!!


  1. We have been praying for you, Brayden and parents! God is faithful to see you through! We have wanted to send a little something. Is there a way for us to get your address? God bless you.
    The Beekmans (Malachi's family)

  2. I love the updates and am so glad things are going well enough that you got to go to the movies!!! How exciting!!!! Brayden - you look fabulous! I love the pictures too. I loved your in-home movie night too. I admire Brayden's strength!

  3. Hi guys! Love the movie night, what a great way to improvise at home with Charlotte's Web! Also, that is so AWESOME you got to get out and actually go to the movies. You're in our thoughts and prayers, always!!! Love, The Dziwanowski's

  4. I think about you and your family all the time!! Brayden has awesome strength and continues to amaze me with his wonderful attitude. Love the mohawk look! Portia

  5. Lisa - we didn't get a chance to meet, but you were kind of enough to come to the CROSSMARK office and present on an anaytics topic we had. I work with Susie Walter and she kept us in the loop on early on in your journey. My wife Carrie and I track Brayden's progress on the site and we keep him in our prayers daily. God Bless you all!

  6. I forgot to mention that the boys were so excited to see how Brayden was doing when I was reading this post. Dylan LOVES his hair! (a little too much)