Wednesday, May 8, 2013

Week #8

In my mind I cannot believe that this is week #8 of treatment. I cannot believe that just 10 weeks ago my worst nightmare was confirmed and we joined this family of pediatric oncology. In a very short 10 weeks we have learned so much about life. In some ways, time is moving very slowly, but in other ways I feel as if I am desperately wanting time to stop so that I can share everyday with Brayden. I know in my mind that wouldn't be fair to him or to myself, but some days I simply don't care!
The last week pasted MOSTLY uneventful. On Friday he had been fussy all evening and went to bed early. At around nine he woke up and was completely inconsolable. I gave him some oxycodone thinking he must have been hurting and then we rocked for 30 minutes. When I got him up to put him back to bed I thought he felt warm. I checked his temp and he was 102, so we called the on call and she instructed us to go directly to the emergency room at Children's. Thankfully be the time we arrived to Children's his fever had dropped. The put us in a room right away and to be safe they took urine and blood cultures to rule out infection, checked his labs, and also got a chest xray. All of his labs were trending up and preliminarily all of his tests looked okay, so they gave him a dose of IV antibiotic and sent us home. We spent a total 4 hours in the emergency room that night and got home around 3AM. As you can see, Brayden and granma took a long nap in the ER......
Thursday we took it easy and Brayden slept until almost noon! I appreciated the quiet time but I was anxious for him to get up. Granma was planning on keeping Brayden Saturday night, but she called and mentioned she wasn't feeling good so we stayed home. She was very disappointed to miss out on "her night". Brayden basically stayed home from Saturday to Monday and he scooted all around the house. I have noticed that he is even happier than before since he is gaining some independence. It is so nice to see him getting into things, and being able to do what he wants. I thought this day might never come :) 
On Monday we went and got some groceries and got Brayden a haircut! I didn't know this but apparently most barber shops are closed on Mondays. (Thank you Bret) After doing some googling I found a place that was open on Mondays in Blue Springs, so we headed over. Mike was the name of the guy who cut Brayden's hair and he did an amazing job! Come to find out, he had recently lost his dad to a brain tumor. What a small world we live in......
Yesterday we went and got Brayden's chemo. His counts continue to trend up, but his ANC is still low causing us to remain in the world of "neutropenia". One interesting fact we did learn is that Brayden can go to somewhat crowded places as long as it is outside even while he is neutropenic! We also learned that he will be significantly more sensitive to the sun given some of his drugs. Knowing that, we will be headed to the zoo on Sunday (with plently of sunscreen) for mothers day with my family. I am anxious to get out and do something fun with Brayden while he is feeling good.
After chemo we went to and got some flowers and vegetables for the garden. Bret and I spent the afternoon planting, and Brayden spent the afternoon on his blanket watching from under the tree. He so enjoys being outside.
Then last night we went to granmas for dinner. Brayden ate well and then got a brownie for dessert, after granpa insisted, and he LOVED it.
Today Brayden's therapists are coming to see him. I am anxious for him to show them how far he has come in the last few weeks. We had to cancel our last appointment since we were inpatient, so hopefully he will be in a good mood and show them some fun stuff!  
Monday will be Brayden's first scheduled MRI since beginning treatment. To say that I am extremely nervous might be the understatement of the year.........
The Standing with Brayden facebook surpassed 400 likes this morning! It amazes me how many people are following along on this journey. Thanks in advance continuing to read and for sharing Brayden's story.

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