Jones Family

Jones Family
November 2009

Monday, December 7, 2009

Checking it twice

So much has happened so fast. Here's a quick update - okay, as quick & brief as I'm able to do while being my detailed self:
Friday when we went to get Brayden's blood work and counts checked, we found out his ANC's were at zero. He was severely Neutropenic, no immune fighting ability at all. It's so scary when this happens. A fever is usually so common, followed by a rush of antibiotics and 3 days in the hospital. But we didn't have much time to let that sink in. His platelets had bottomed out to 40 (at 20 they usually transfuse) and his hemoglobin was at 7.4. If it's below 8, usually a transfusion is done. In the past, Brayden hasn't needed blood or shown as many symptoms and I immediately became concerned. How would I know if something went wrong? We waited in the secure isolation room at the Clinic for what to do next. The nurse could see the panic in my eyes. 4 hours later, we had orders from AR Children's Hospital to admit him to our local hospital and have 2 units of blood transfused. Ugh...being at the hospital with Bray being Neutropenic is the last thing I'd want to do for fear of him getting something else while there and his system was so susceptible. Brayden was NOT happy. Even though we talked about this possibility, he wasn't thrilled at all when he thought he was done with overnight hospital stays.

We drove straight to the hospital to get things going until Dad could join us after work and bring some things from home for our night stay. I was a wreck and insisted he wear 2 masks. Thankfully we got him to a room pretty quick. The nurses probably thought I was crazy. I grabbed the first container of industrial strength alcohol wipes in the hallway and got busy. These things you can't even touch with your bare hands! The bed rails, the light switches, the door knobs, you name got wiped down. I had Brayden laying in his bed like a mummy with his DS not moving until I tried to feel a little better about this foreign room and hospital. I tried to swallow down the panic when the tech walked in the room without gloves or mask to take Brayden's vitals. But I did what we were taught in the early days after diagnosis at ACH and asked politely. And so we waited. 4 hours later, Brayden and I had visited with dad, got a little more settled in, knocked out some schoolwork, and finally his first unit of blood showed up. There were some concerns at first when orders were first written because of some extra steps that have to be done before he can receive a transfusion. Needless to say, we were praying extra prayers to prevent so many of the side effects that can develop and I was SO happy to see the bag finish 4 hours later and his stats still looking good while they prepped the second bag. About 6 the next morning, his nurse was removing the second empty bag and told me we were free to go, or were welcome to stay. We were breathing a huge sigh of relief! Brayden was stirring and I told him the news. Sleep? Uh - NO! He was up and getting his shoes!

After the cold drive home, I couldn't stop smiling. Brayden was definitely juiced up. He didn't stop talking once all the way home! Within a few more hours, his pale skin and gray lips were bright & rosy again! It's amazing how much more energy he had and again reminds me if he remembers what it was like to really feel good. We were trying to recover while still catching up on sleep and the crazy week prior. The night away made me realize we were so tight on time before Christmas and we needed to get some things done! After re-cleaning our house again since Brayden was Neutropenic, we enjoyed some time at home before today's visit back to the local clinic.

I had warned Brayden if his platelets were low, we might have to repeat Friday's trip for a different infusion. Meanwhile, this morning we heard some incredible news. His Oncologist really wanted Brayden to get finished with Radiation before Christmas. Thanks to some prodding from his awesome Nurse, the dates were pushed back. Only we thought we had one more weekend. NOPE! We leave in a few hours for Little Rock! AAAHHH!!! However, if Brayden was still Neutropenic and needed platelets, things might again change. I don't know if anyone knows how it's minute by minute sometimes. Again, I have to relinquish control and have that uncomfortable feeling of not being able to plan everything out. After calls with ACH, Carti for Radiation, my work, Bryan, my mom (since sometimes she's the last to know!), Brayden's teacher...we left for Clinic. After Brayden's normal sarcastic humor with the nurses, he received his last round of aggressive chemo before he starts Maintenance chemo for 2 1/2 yrs! YEAH!! While we were celebrating, the nurse at the local clinic comes in and asks if it's really Brayden in that bed or his twin. I saw the yellow paper in her hand and knew she was holding Brayden's lab results from his blood work. WHOA! His platelets JUMPED to over 300! He had ANC's! Not a ton but enough to keep going and help him not be Neutropenic! And, of course, after 2 units of blood, his hemoglobin was looking good! Everyone was so stunned, they did another blood draw and checked his labs twice...just to be sure! It was confirmed...they were accurate. I started making phone calls to confirm with everyone again, we would in fact be leaving for Radiation.

Brayden was student of the week this week and I was so sad to realize he wouldn't get to finish. We won't be home again until the night of the 18th. Dad will stay back and work and I'm so thankful for Marriott reward points donated from gracious co-workers at my awesome company so we have a place to stay. So we'll get this knocked out and be home to enjoy a week before Christmas.

PS - someone stopped by tonight who was also checking things twice! I wish I had gotten a picture of Brayden's reaction when Dad opened the front door to show who was standing there! It was very last-minute...Dad arranging with a sweet friend now that his counts had rebounded knowing he can't get out. He brought such a nice gift by and was telling Brayden how brave and strong he has been and to keep on fighting! Brayden didn't stop smiling for a while.

These are the things we are certainly praying for...after hearing from Brayden's Oncologist some children can get 'violently ill' and have other reactions to Radiation, we're praying Brayden has minimal impact from this final aggressive round to eliminate all the Leukemia cells found in his brain at the time of his diagnosis. There are too many side effects of Radiation to list here. We certainly pray Brayden be protected from the cognitive impact, from the risk of secondary cancers. We pray the CT-scan and head piece fitting go well. We pray Brayden be emotionally at peace with this uncertain and scary treatment. For protection for us traveling, Dad here at home, and us in Little Rock alone.

Until next time...Brayden says he'll soon be tan like mom after his radiation is done!

1 comment:

  1. I hope you have a good day today. We are thinking of you.

    We are just so sad for Hannah's family. Thanks for introducing her to us.