Tuesday, April 9, 2013

Chemotherapy Week #4

I am very proud to say that we have made it through the last month! I won't lie though, while I do my best to put on a brave face, sometimes it is all I can to to keep it together. The only real choice available is to carry on with life no matter how painful or unfair it may seem. We must go to work, Brayden must go to his multiple appointments, and we have to try to make the best out of this journey. When we began this journey in January, I wondered how we would ever make it. We have learned a lot since then about what is really important, and through the amazing support of our family, our friends, perfect strangers, our coworkers, and an amazing oncology clinic, we are in fact surviving. The chemo has been hard, but I anticipated it to be worse so I think that helped too. I really underestimated how resilient kids can be :)
Today we headed over to the clinic for Brayden's labs and chemo. The clinic was great as usual, and they had us in and out in no time! Brayden did good for access without Elizabeth, but he did miss her. I think she is a welcome distraction, but it looked like some other kids needed her more than Brayden this morning, and he is happy to share. His initial labs even looked good! His hemoglobin was holding steady and his white count was trending up indicating that his ANC should have been good. His platelets are also trending up as well! They sent us on our way and said they would call with his ANC.
We then headed up the the ENT clinic. After an exam where it took Bret and I both to hold Brayden down, it was determined that there is no longer has fluid in his ears. WHAT? The ENT was kind enough to clean the wax out of his ears and then sent us back for another hearing test. As usual, Brayden didn't want to participate, and only responded to a few sounds. Based on the sounds he responded to, they are reporting he probably has mild hearing loss. After doing another test where they see if the ear drum will move with sound waves, it was determined he still has "negative pressure in the 300's" in both of his ears. Normal pressure is around 0. They explained negative pressure being like the pressure you have in your ear during an airplane ride, and then sent us back to ENT. It has been decided that a true baseline hearing test can not be obtained with these pressures, so Brayden will be sedated on Thursday for a hearing test called an ABR. This test will finally tell us for sure if he has hearing loss. If he does in fact have hearing loss then we will know which ear it is in and how substantial it is. I am so relieved to finally be getting these answers! I wish he didn't have to be sedated again, but we need these results.
After leaving ENT we headed home to get Brayden some lunch and a nap. When he got up we headed to Walmart for some groceries. That's where we were when our nurse practitioner called to tell us that Brayden's ANC was only 490, down from 710 last week. We checked out and left ASAP.
Neutropenic baby + Walmart = Not good!
So now we are back to the world of neutropenia, where Brayden can't go to church, go out to eat, or really go anywhere safely. A temp of  >101.5 will win us a direct hospital admission and let's be honest, that just doesn't sound fun for anyone.....
Before dinner Brayden and I spent some time playing with granma, and Bret took this video.....
These are the memories I love making with Brayden and they are easy to make. There is nothing I would rather do than play with Brayden, making him laugh like this. I know that someday these videos and memories will be all we have, so I am doing my very best to document as much as I can about Brayden and this journey.
Brayden's facebook has surpassed 250 likes! Thanks to everyone who liked and/or shared "Standing with Brayden"! Thanks in advance for keeping those shares and likes coming!

1 comment:

  1. Julie & Bret:

    There is nothing stronger than a parents love. Ya'll are showing amazing strength in the face of adversity. Made another donation to the UGMA account I've established for Brayden and bought 15 shares of a stock called TWO which pays a nice dividend, over 12%. He is in my thoughts everyday that I draw breath.