Jones Family

Jones Family
November 2009

Monday, June 21, 2010

Little Rock Update - Maintenance Round 3

A day of many milestones - 14 months since diagnosis. 3rd round of Maintenance. 1st big chemo roadblock.

We're all a little battered and beaten after a VERY busy weekend. My sweet sister had her wedding reception and there was a flurry of activity since Friday night. Brayden said it was 'official' now that he has a new Uncle! Yesterday was a lovely Father's Day brunch with new family that was truly wonderful. After not much sleep all weekend - and still catching up from the hospital stay - we were up at 4 to leave out for Little Rock today. It marks the start of Brayden's 3rd round of 12-week Maintenance chemo cycle. He has 9 more remaining before official 'end of treatment.' Today was a big question mark in our minds with all the craziness of Brayden's counts in the last month, the blood transfusion, the ER trip & hospital admission and lower counts. It is rarer to have to have a blood transfusion during maintenance and we were reassured by this by our awesome Oncologist, but then questioned about it by a nurse. So we tried to disguise our concern...I'm getting ahead of myself. I'm just full with questions and remarks and comments and reassurances yet more questions and concerns. Back to the trip...thankfully, it went smoothly. The start of a cycle of treatment (1 every 12 weeks) is tough because it kicks off with an LP or lumbar puncture with intrathecal chemo (Methotrexate). This is to check for Leukemia cells to remain clear of his spinal fluid to treat the Level 2 presence of cells at the time of diagnosis. This spinal chemo has been on-going as well as Radiation to combat and treat the Leukemia presence in his brain. In enduring this treatment, it begins with a sedation which means no food or drink after midnight. It's never an easy trip for Brayden, but luckily he slept this morning and it wasn't so bad. His sedation began shortly after 11 and he did well. Prior to his sedation, Brayden had his port accessed and blood drawn to do lab work. This was the first time Brayden didn't make counts in order to have chemo. He needed to have ANC's above 750 (500 is Neutropenic). Today he was 660. I've said it before and I'll say it again - his Dr. can tell us the building is on fire and not incite panic in us. He's truly amazing. He was reminding us how typical this is for treatment and how Brayden is the only kiddo on this treatment protocol that's made it this far without being interrupted with lower counts. What this means is he didn't receive his iv Methotrexate and only received his other iv chemo, Vincristine. This one doesn't affect his counts. His nightly chemo, 6MP, will also be skipped this week. This will allow his bone marrow a chance to recover. He started steroids tonight so that will really give him a boost. He told us next Monday when he receives labs and chemo locally will really be telling that week and the one after on how Brayden is doing. He's thinking Brayden is still fighting off a bug of some sort. The lower counts, the ER visit and hospital admission, his elevated liver enzymes, the need for a blood transfusion. Hopefully the steroids will help kick that too. His Dr. was concerned if we didn't hold chemo, it would further diminish his system and result in another possible hospital stay from neutropenic-induced fever. So we know this is a common occurrence and were warned about it. I guess like the fever, this is another first in his treatment and is catching us off-guard. It's scary to be afraid of the poison in your child at first and then you come to realize it's what will save your child's life. You come to rely on it and it's scary when it isn't able to be given. Your fears creep in of what-if with the Leukemia not being battled for a week with aggressive chemo. He reassured us of another child on the same protocol as Brayden who hasn't been able to have chemo for 6 months. I looked at Bryan later and realized again how well Brayden has done and endured this treatment. We have to look to the experts and trust them and put our faith in the One that holds Brayden. Again - trust. Sound familiar? His liver enzymes continue to be elevated. If that continues, his chemo will have to be adjusted down. Not something we want to happen...his hemoglobin, even after the transfusion, was a few points lower than what we expected. We're certainly praying his system bounces back, he strengthens this week without the chemo, and he's able to kick whatever his system may be fighting. We're praying his liver strengthens and all the trauma the Methotrexate and 6MP chemo is putting through him to kick the Leukemia doesn't weaken his liver to that degree.

We've had an awful night with the Pharmacy. I'm thinking after 14 months now, wouldn't they be expecting the same monthly prescriptions? I've learned in the last few weeks I have to stay informed and be Brayden's advocate. The wrong dosage and directions were given on a prescription and another was incorrect. Scary. 6 phone calls finally got the prescription even filled. All the while, we were rushing to get his meds done in time for him to have them with dinner. My days of working at a Pharmacy doesn't lend me to be lenient at all. I guess I've been there, done that, so what's the big deal? I know mistakes can happen. It just reaffirmed we can't let our guard down when working to be a parent and protecting our sweet boy.

Thankfully Brayden didn't 'emesis' today, as he put it. He enjoyed sharing with all the nurses how he got his first haircut last week since all his hair grew back in. We had to cut off all his cute curls and his chemo highlights, as his Dr. told us. He was adorable but getting SO shaggy so we made the appt before the big wedding reception and pictures. It certainly makes him look much older! We found out today Brayden has grown more since his last visit. He's pumped to not have to take his nightly chemo med for a week. The little things, right? He enjoyed catching up with some of his favorite nurses on how he's been doing since returning to school and now being out for the summer. He had a good day.

Brayden says to tell everyone he says hi. We enjoyed a nice walk on this 1st day of summer with Hershey after the sun had gone down just enough to bring some heat relief. He's a bit sore from the procedure today but the walk was good. I know we'll all sleep well tonight. Thank you all again for your love, prayers, and support!

1 comment:

  1. The words, I love you, are never deep enough or adequate enough to express my love for you guys! I don't know how you do all you do, truly. Just know that I love you BEYOND words! ~ Nini